Final Report of the Research Study on Children with Disabilities Living in Uganda

Research Study on Children with Disabilities Living in Uganda Situational Analysis on the Rights of Children with Disabilities in Uganda Submitted to UNICEF Uganda

By: Nadège Riche, Lead Researcher Email: richenadege@gmail.com; Telephone: +256 (0) 790 452 133 James Anyimuzala, Researcher Email: Jamesani09@gmail.com; Telephone: +256 (0) 793 632 288

30 May 2014

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Table of content ABBREVIATIONS AND ACRONYMS .................................................................... 9 EXECUTIVE SUMMARY..................................................................................... 12 1.

2.

3.

4.

STUDY BACKGROUND ...........................................................................................12 PURPOSE OF THE STUDY ........................................................................................12 METHODOLOGY...................................................................................................12 FINDINGS ...........................................................................................................12 4.1.

4.2.

4.3.

5.

6.

Statistics Relating to Children with Disabilities Living in Uganda ........................13 Laws and Policies Relating to Children with Disabilities Living in Uganda...........13 Programmes and Active Stakeholders Working in the Disability Field in Uganda 14

CHALLENGES TO THE IMPLEMENTATION OF THE RIGHTS OF CHILDREN WITH DISABILITIES .....15 KEY RECOMMENDATIONS FOR UNICEF UGANDA .......................................................16

PART 1: INTRODUCTION .................................................................................. 18 1.

2.

CONTEXT ...........................................................................................................18 OBJECTIVE ..........................................................................................................18

PART 2: METHODOLOGY ................................................................................. 20 1.

2.

SCOPE OF THE RESEARCH STUDY: TARGET GROUP AND GEOGRAPHICAL COVERAGE ............20 RESEARCH METHODS ............................................................................................20 2.1.

2.2.

2.3.

2.4.

2.5.

3.

Data Collection on Children with Disabilities Living in Uganda ...........................20 Analysis of the Ugandan Institutional and Regulatory Frameworks ...................21 Mapping of Programmatic Initiatives ................................................................22 Key Informant Interviews...................................................................................22 Field Research ...................................................................................................23

STUDY LIMITATIONS .............................................................................................24

PART 3: SUMMARY AND ANALYSIS OF STATISTICS RELATING TO CHILDREN WITH DISABILITIES IN UGANDA ....................................................................... 25 1.

MAIN SOURCES OF INFORMATION ...........................................................................25 1.1.

1.2.

1.3.

2.

CHILD DISABILITY PREVALENCE IN UGANDA ...............................................................30 2.1.

2.2.

2.3.

3.

International Sources of Information .................................................................25 National Sources of Information ........................................................................27 The Issue of Measuring –Child- Disability Prevalence .........................................29 Disability Prevalence Worldwide........................................................................30 Disability Prevalence in Uganda ........................................................................31 Child Disability Prevalence in Uganda ................................................................33

DISABILITY AND EDUCATION ...................................................................................36 3.1. Worldwide Statistics ..........................................................................................37 3.2. Ugandan Statistics ............................................................................................37 3.2.1.

Enrolment Rates of Children with Disabilitiess in Pre-Primary, Primary and Secondary School ......................................................................................................37 3.2.2.

Drop-Out Estimations ................................................................................41 2

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 3.2.3.

3.2.4.

3.2.5.

3.2.6.

3.2.7.

Disaggregation by Impairments .................................................................41 Geographical Coverage ..............................................................................43 School Attendance and Household Wealth Status .....................................45 Conclusions on Education and Disability ....................................................46 School Environment...................................................................................47

4. DISABILITY AND VARIOUS FIELDS RELATING TO THE EVERYDAY LIFE OF CHILDREN WITH DISABILITIES ...............................................................................................................47 4.1.

4.2.

4.3.

4.4.

4.5.

4.6.

Causes of Disability ............................................................................................47 Disability and Birth Registration ........................................................................47 Enjoyment of Human Rights ..............................................................................48 Disability and Poverty ........................................................................................49 Disability and Humanitarian Crisis .....................................................................49 Disability and (re)habilitation ............................................................................49

PART 4: PRESENTATION AND ANALYSIS OF THE INSTITUTIONAL AND REGULATORY FRAMEWORKS .......................................................................... 51 1. THE INSTITUTIONAL FRAMEWORK: THE ROLE OF NATIONAL AND LOCAL GOVERNMENT INSTITUTIONS .............................................................................................................51 1.1. National Government Institutions......................................................................51 1.1.1.

The Ministry of Gender, Labour and Social Development ..........................51 1.1.1.1. The Community-Based Rehabilitation Programme .................................52 1.1.1.2. The Mine Victim Assistance Programme ................................................53 1.1.1.3. The Special Grants for PwDs ..................................................................53 1.1.1.4. The Social Protection Programme ..........................................................54 1.1.1.5. Other programmes ................................................................................54 1.1.2.

The Ministry of Health ...............................................................................54 1.1.3.

The Ministry of Education and Sports ........................................................55 1.1.4.

The Ministry of Finance, Planning and Economic Development .................55 1.1.5.

The Uganda Human Rights Commission .....................................................55 1.1.6.

The Equal Opportunities Commission ........................................................56 1.1.7.

The National Council for Disability .............................................................56 1.1.8.

The National Council for Children ..............................................................56 1.2. The Parliament of Uganda.................................................................................57 1.3. The Local Government Institutions ....................................................................57

2. THE REGULATORY FRAMEWORK RELATING TO CHILDREN WITH DISABILITIES LIVING IN UGANDA ...................................................................................................................59 2.1. International Conventions and Instruments .......................................................59 2.1.1.

The United-Nations Convention on the Rights of the Child ........................59 2.1.2.

The United-Nations Convention on the Rights of Persons with Disabilities 60 2.1.3.

Other International Instruments ................................................................61 2.2. The Ugandan Regulatory Framework Relating to Children with Disabilities .......61 2.2.1.

The Regulatory Framework Relating to Health ...........................................61 2.2.2.

The Regulatory Framework Relating to - Inclusive- Education ....................62 2.2.3.

The Regulatory Framework Relating to Protection of Children ..................63 2.3. Overview of National and Local Government Institutions Leading the Implementation and Monitoring of Each Legislation and Policy Targeting Children with Disabilities Living in Uganda .........................................................................................63 3

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

PART 5: MAPPING OF PROGRAMMES AND ACTIVE STAKEHOLDERS WORKING IN THE DISABILITY FIELD IN UGANDA .............................................................. 65 1.

UNITED-NATIONS AGENCIES ..................................................................................65 1.1.

1.2.

1.3.

2.

The Office of the High Commissioner for Human Rights .....................................65 The United Nations Population Fund .................................................................66 The World Health Organisation .........................................................................67

DONOR ORGANISATIONS .......................................................................................67 2.1. National Development Agencies ........................................................................67 2.1.1.

The Danish International Development Agency .........................................67 2.1.2.

The Norwegian Agency for Development Cooperation ..............................68 2.1.3.

The United-States Agency for International Development .........................69 2.2. Foundations ......................................................................................................70

3. CIVIL SOCIETY ORGANISATIONS OF PERSONS WITH DISABILITIES RUNNING PROGRAMMES TARGETING CHILDREN WITH DISABILITIES LIVING IN UGANDA ...............................................72 4. NON-GOVERNMENTAL ORGANISATIONS RUNNING PROGRAMMES TARGETING CHILDREN WITH DISABILITIES LIVING IN UGANDA .....................................................................................74 4.1.

4.2.

4.3.

4.4.

4.5.

4.6.

4.7.

4.8.

5.

Able Child Africa ................................................................................................74 The African Child Policy Forum ..........................................................................74 Humane Africa ..................................................................................................74 L’Arche ..............................................................................................................75 Plan ...................................................................................................................75 Save the Children ...............................................................................................76 War Child ..........................................................................................................78 World Vision ......................................................................................................78

CONCLUSIONS ON THE MAPPING OF PROGRAMMES ....................................................78

PART 6: THE DISABILITY SITUATIONAL ANALYSIS............................................ 80 1. THE SITUATION OF THE RIGHTS OF CHILDREN WITH DISABILITIES LIVING IN UGANDA AS REFLECTED BY THE STATISTICS, LAWS AND POLICIES ............................................................80 1.1. Available Statistical Information Relating to Children with Disabilities Living in Uganda .........................................................................................................................80 1.2. The Rights of Children with Disabilities According to the Ugandan Legal and Policy Framework..........................................................................................................81 1.2.1.

Definition of a Child with a Disability .........................................................82 1.2.2.

Non-Discrimination and Equal Opportunities .............................................83 1.2.3.

Rights to Life, Health Services and (Re)Habilitation ....................................83 1.2.4.

Right to -Inclusive- Education ....................................................................84 1.2.5.

Right to Recreational Activities, Leisure and Sport .....................................86 1.2.6.

Protection from Exploitation, Violence and Abuse .....................................86 1.3. Main Conclusions about the Situation of the Rights of Children with Disabilities Living in Uganda as Reflected by the Statistics, Laws and Policies .................................87

2. IDENTIFICATION OF BARRIERS AND BOTTLENECKS PREVENTING THE FULL REALISATION OF THE RIGHTS OF CHILDREN WITH DISABILITIESS IN UGANDA.........................................................88 2.1.

2.2.

Social Norms of Disability Leading to Discrimination .........................................88 A Serious Gap in Implementation of the Ugandan Regulatory Framework .........90

4

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 2.3. An Institutional Framework Weakened by Lack of Coordination and Limited Knowledge and Capacities of Key Stakeholders .............................................................93 2.4. A Fragmented Programmatic Approach Resulting in Gaps in the Responses Provided by the Duty Bearers ........................................................................................96 2.4.1.

A Fragmented Programmatic Approach .....................................................96 2.4.2.

Gaps in the Current Programmatic Responses ...........................................97 2.4.2.1. Challenges Faces by Children with Disabilities in Accessing Health and (Re)Habilitation Services .......................................................................................97 2.4.2.2. Challenges Faced by Children with Disabilities in Accessing Education ...98 2.5. Main Conclusions about the Barriers and Bottlenecks Preventing the Full Realisation of the Rights of Children with Disabilities in Uganda .................................100

PART 7: RECOMMENDATIONS TO UNICEF UGANDA ..................................... 101 1. ONGOING ASSESSMENT OF THE SITUATION OF CHILDREN WITH DISABILITIES LIVING IN UGANDA .................................................................................................................101 1.1. Actively Consult and Listen to Children with Disabilities on Issues Concerning Them 101 1.2. Support the Collection of Statistical Information Relating to Children with Disabilities Living in Uganda .......................................................................................102 1.2.1.

Improve Statistical Information Relating to Children with Disabilities Living in Uganda................................................................................................................102 1.2.1.1. Adopt Available Global Guidelines Relating to Disability Measurement 103 1.2.1.2. Fill the Gap: Disaggregate and Break Down Statistical Information Relating to Children with Disabilities Living in Uganda .........................................103 1.2.2.

Financially and Technically Support the Uganda Bureau of Statistics to Produce Comprehensive Statistics relating to Children with Disabilities Living in Uganda 104

2.

ESTABLISH STRONG AND SUSTAINABLE REGULATORY AND INSTITUTIONAL FRAMEWORKS ..106 2.1. Review and Enforce the Ugandan Regulatory Framework Relating to Children with Disabilities...........................................................................................................106 2.2. Structure the Institutional Framework and Reinforcing the Knowledge and Capacities of Key Stakeholders ....................................................................................109 2.2.1.

Call for the Coordination and Alignment of the Efforts of the Local and National Government Institutions ...........................................................................109 2.2.2.

Create a Ugandan Partnership on Children with Disabilities ....................110 2.2.3.

Building the Knowledge and Capacity of Key Stakeholders Working with Children with Disabilities in Uganda ........................................................................111

3. DESIGN AND IMPLEMENT PROGRAMMES TARGETING CHILDREN WITH DISABILITIES LIVING IN UGANDA .................................................................................................................112 3.1. Mainstream the Perspective of Children with Disabilities in all Programmes Conducted and Sponsored by UNICEF Uganda ............................................................113 3.2. Identify Key Focus Areas for Action: Disability Prevention, Health and (Re)Habilitation, Education, Social Norms Change and Awareness-Raising .................114 3.2.1.

Disability Prevention Programmes ...........................................................115 3.2.2.

Access to health services and (re)habilitation ..........................................116 3.2.3.

Access to Education .................................................................................117 5

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 3.2.4.

Social Norms Change and Raising Awareness Campaigns .........................120 3.3. Conclusion about the section on programmes .................................................121 3.4. Actively Consult and Involve the Civil Society Organisations of PwDs Operating in Uganda (CRPD Article 33.3) and the Organisations of the Child Movement .................123

4.

5.

MAIN CONCLUSIONS ABOUT THE RECOMMENDATIONS ..............................................125 THE TEN KEY RECOMMENDATIONS IN A NUTSHELL ....................................................125

PART 8: THE BOTTLENECKS ANALYSIS TABLE TO THE REALISATION OF THE RIGHTS OF CHILDREN WITH DISABILITIES LIVING IN UGANDA ..................... 127 BIBLIOGRAPHY ............................................................................................... 143 ANNEX 1: LIST OF PROGRAMMES AND PROJECTS TARGETING CWDS LIVING IN UGANDA ........................................................................................................ 150 1. PROGRAMMES IN THE EDUCATION SECTOR ..............................................................150 2. PROGRAMMES IN THE HEALTH AND (RE)HABILITATION SECTOR ....................................170 3. PROGRAMMES IN THE SPORT SECTOR .....................................................................195 4. PROGRAMMES TARGETING GIRLS WITH DISABILITIES LIVING IN UGANDA .......................200 5. PROGRAMMES EMPOWERING CWDS AND PROMOTING THEIR HUMAN RIGHTS ...............202 6. MULTI-DIMENSIONAL PROGRAMMES TARGETING CHILDREN WITH DISABILITIESS LIVING IN UGANDA .................................................................................................................205 7. PROGRAMMES MAINSTREAMING THE PERSPECTIVE OF CWDS LIVING IN UGANDA ...........214 8. PROGRAMMES BUILDING THE CAPACITY OF UGANDAN CIVIL SOCIETY ORGANISATIONS OF PERSONS WITH DISABILITIES ........................................................................................219

ANNEX 2: TECHNICAL DATA SHEET FOR EACH LAW AND POLICY RELATING TO CWDS LIVING IN UGANDA ............................................................................. 222 1. THE CONSTITUTION OF THE REPUBLIC OF UGANDA, 1995 ..........................................222 2. THE LOCAL GOVERNMENT ACT, 1997, AMENDED IN 2001, 2005, 2006 AND 2013 ......225 3. THE NATIONAL DEVELOPMENT PLAN 2010/11 – 2014/15 .......................................231 4. THE PERSONS WITH DISABILITIES (PWDS) ACT, 2006 ...............................................239 5. THE NATIONAL POLICY ON DISABILITY IN UGANDA, 2006...........................................246 6. THE NATIONAL COUNCIL FOR DISABILITY ACT, 2003 .................................................249 7. THE EQUAL OPPORTUNITIES COMMISSION ACT, 2007 ..............................................256 8. THE CHILDREN ACT, 1996 ...................................................................................260 9. THE NATIONAL COUNCIL FOR CHILDREN ACT, 1996 ..................................................263 10.

THE CHILD LABOUR POLICY, 2006 .....................................................................267 11.

THE NATIONAL ORPHANS AND OTHER VULNERABLE CHILDREN POLICY, 2004 .............269 12.

THE EDUCATION (PRE-PRIMARY, PRIMARY AND POST-PRIMARY) ACT, 2008 ..............274 13.

THE UGANDA NATIONAL INSTITUTE OF SPECIAL EDUCATION ACT, 1995 AMENDED BY THE UNIVERSITY AND OTHER TERTIARY INSTITUTIONS ACT, 2001 AMENDED IN 2003 AND 2006 ....283 14.

THE DRAFT NON FORMAL EDUCATION POLICY FOR EDUCATIONALLY DISADVANTAGED CHILDREN, 2012 ......................................................................................................286 15.

THE DRAFT POLICY ON SPECIAL NEEDS AND INCLUSIVE EDUCATION, 2011 .................291 16.

THE SECOND NATIONAL HEALTH POLICY, 2010 ....................................................296 6

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

List of figures Figure 1: CwDs in Uganda per Types of Impairments, in Percentage (%) (Uganda, 2011) ......36 Figure 2: CwDs in pre-primary, primary and secondary school per year, in number (Uganda, 2009, 2010 and 2011) ...........................................................................................................38 Figure 3: CwDs in pre-primary school per gender, in number (Uganda, 2009, 2010 and 2011) .............................................................................................................................................39 Figure 4: CwDs in primary school per gender, in number (Uganda, 2009, 2010 and 2011) ....40 Figure 5: CwDs in secondary school per gender, in number (Uganda, 2009, 2010 and 2011) 40 Figure 6: CwDS in pre-primary school per impairments, in percentage (Uganda, 2009, 2010 and 2011) .............................................................................................................................42 Figure 7: CwDs in primary school per impairments, in percentage (Uganda, 2009 and 2010)42 Figure 8: CwDs in secondary school per impairments, in percentage (Uganda, 2010) ...........43 Figure 9: CwDs in pre-primary school per district, in percentage (Uganda, 2009, 2010 and 2011) ....................................................................................................................................44 Figure 10: CwDs in primary school per district, in percentage (Uganda, 2009, 2010 and 2011) .............................................................................................................................................44 Figure 11: CwDs in secondary school per district, in percentage (Uganda, 2009, 2010 and 2011) ....................................................................................................................................45 Figure 12: Birth Registration of CwDs, in percentage (%) (Uganda, 2011) .............................48 Figure 13: Health Care Service Providers Used by CwDs, in number (Uganda, 2011) .............50

List of tables Table 1: Measuring Disability Prevalence ..............................................................................12 Table 2: Spotlight - Gulu Primary School ...............................................................................13 Table 3: Key Findings ............................................................................................................14 Table 4: Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities ............................................................................................................................15 Table 5: Ten Key Recommendations for UNICEF Uganda ......................................................17 Table 6: Population of PwDs per age and impairments, in number (Uganda, 2002) ..............32 Table 7: CwDs per Gender and per the Thirsty-Two “New” Districts, in number (Uganda, 2012) ....................................................................................................................................35 Table 8: Overall school enrolment of CwDs per school level and per year, in number (Uganda, 2009, 2010 and 2011) ...........................................................................................................39 Table 9: Education Indicators per Disability Status of Head of Household and Wealth, in Percentage (%) (Uganda, 2002) ............................................................................................46 Table 10: Overview of the National and Local Government Institutions Leading the Implementation and Monitoring of Each Legislation and Policy Targeting CwDs Living in Uganda .................................................................................................................................64 Table 11: the Bottlenecks Analysis Table ............................................................................127 Table 12: Presentation of Programmes in the Education Sector..........................................150

7

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Table 13: Presentation of Programmes in the Health and (re)habilitation Sector ................170 Table 14: Presentation of Programmes in the Sport Sector .................................................195 Table 15: Presentation of Programmes Targeting Girls with Disabilities Living in Uganda ...200 Table 16: Presentation of Programmes Empowering CwDs and Promoting their Human Rights ...........................................................................................................................................202 Table 17: Presentation of Multi-Dimensional Programmes Targeting CwDs Living in Uganda ...........................................................................................................................................205 Table 18: Presentation of Programmes Mainstreaming the Perspective of CwDs Living in Uganda ...............................................................................................................................214 Table 19: Presentation of Programmes Building the Capacity of Ugandan Civil Society Organisations of Persons with Disabilities...........................................................................219

8

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Abbreviations and Acronyms ABEK

Alternative Basic Education for Karamoja

ACPF AJWS

African Child Policy Forum American Jewish Worldwide Services

ANPPCAN

African Network for the Prevention and Protection Against Child Abuse and Neglect

ALC AVSI

Advocacy Learning Centre Association of Volunteers in International Service

CBR

Community-Based Rehabilitation

CIDA CP

Canadian International Development Agency Cerebral palsy

CoRSU CRC

Children’s Surgical Rehabilitation Hospital (Formerly called Comprehensive Rehabilitation Services in Uganda) Convention on the Rights of the Child

CRPD

Convention on the Rights of Persons with Disabilities

CSO

Civil Society Organisation

CCT

Coordinating Centre Tutor

CwDs

Children with disabilities

DANIDA DES

Danish International Development Agency Directorate of Education Standard

DFID

Department for International Development of the United-Kingdom

Disability SitAn

Situational Analysis on the Rights of Children with Disabilities in Uganda

DPO

Civil Society Organisation of Persons with Disabilities

DPOD

Disabled People Organisation Denmark (Formerly called the Danish Umbrella Organisations of Disabled People (DSI) and within Denmark, DPOD is known as DH that stands for Danske Handicaporagnisationer)

DSOD EARS

Disabled Sport Organisations of Denmark Education Assessment and Resource Services

ECD

Early Childhood Development

ECDC EFA

Early Childhood Development Centres Education For All Movement

EOC

Equal Opportunities Commission

ESC FDDB

Education Service Commission Association of Danish Deaf-Blind People

FENU GDPU

Federation of Education Non-Gouvernmental Organisations in Uganda Gulu Disabled People Union

9

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda GPcwd

Global Partnership on children with disabilities

GUWODU

Gulu Women with Disabilities Union

ICF

International Classification of Functioning, Disability and Health

IDAY

International Day of African childhood and its Youth

IDIWA IE

Integrated Disabled Women Activities Inclusive education

IEC

Information, Education and Communication

IF

International Federation for Spina Bifida and Hydrocephalus

IGA

Income Generating Activity

iNGO IT

International Non-Governmental Organisation Information Technology

JOAC

Jersey Overseas Aid Commission

KII LC

Key Informant Interviews Local Councillor

KCH

Katalemwa Leonard Cheshire Home for Rehabilitation Services

KTU LEV

Ka Tutandike Uganda National Association for People with Learning Disabilities in Denmark

MHU MIS

Mental Health Uganda Management Information System

MoGLSD

Ministry of Gender, Labour and Social Development

MoES MoFPED

Ministry of Education and Sports Ministry of Finance, Planning and Economic Development

MoH

Ministry of Health

MP NAD

Member of Parliament National Association of the Deaf

NCC

National Council for Children

NCD

National Council for Disability

NDP

National Development Plan

NHP II NGO

Second National Health Policy Non-Governmental Organisation

NORAD

Norwegian Agency for Development Cooperation

NSDS

Report of the National Service Delivery Survey

NUDIPU

National Union of Disabled Persons of Uganda

NUWODU OVC

National Union of Women with Disabilities of Uganda Orphans and vulnerable children

PSG

Parent Support Group

PwDs SL

Persons with disabilities Sign language

10

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda SNE

Special Needs Education

SN&IE

Special Needs and Inclusive Education

UBOS

Uganda Bureau of Statistics

UCSD

University of California San Diego

UDHS UHRC

Uganda Demographic and Health Surveys Ugandan Human Rights Commission

UJCC

Uganda Joint Christian Council

UN

United Nations

UNATTU

Uganda National Teachers Trade Union

UNESCO UNFPA

United Nations Educational, Scientific and Cultural Organization United Nations Population Fund

UNHS

Ugandan National Household Surveys

UNICEF UNISE

United Nations Children’s Fund Uganda National Institute of Special Education

UNMHCP

Uganda National Minimum Health Care Package

UPACLED

Uganda Parents of Children with Learning Disabilities (now called the Uganda Parents of Persons with Intellectual Disabilities (UPPID))

UPFC

Uganda Parliamentary Forum for Children

UPPID USAID

Uganda Parents of Persons with Intellectual Disabilities (formerly called Uganda Parents of Children with Learning Disabilities (UPACLED)) United States Agency for International Development

USDC

Uganda Society for Disabled Children

UWOPA WFP

Uganda Women’s Parliamentary Association World Food Programme

WHO

World Health Organisation

W3c

World Wide Web Consortium

11

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Executive Summary 1. Study Background This brief summarizes the results of the Research Study on Children with Disabilities Living in Uganda, prepared by Nadège Riche and James Aniyamuzaala Rwampigi. The study was commissioned by the United Nations Children’s Fund (UNICEF) in Uganda and was conducted between November 2013 and April 2014

2. Purpose of the Study UNICEF is committed to ensuring special protection for the most disadvantaged children, including children with disabilities (CwDs), upholding their human rights in line with the UN Convention on the Rights of the Child (CRC) and Convention on the Rights of Persons with Disabilities (CRPD) and ensuring their unconditional access to all services. In this context, UNICEF Uganda has identified the need to increase the general knowledge and awareness about the state of CwDs’ human rights in Uganda. UNICEF Uganda therefore decided to conduct a research study to assess the situation of CwDs living in Uganda. The study aim is to analyse and consolidate available information rather than to create new knowledge. This will ultimately feed into UNICEF’s Uganda and Government of Uganda’s programmatic response to the issues faced by CwDs from 2015 onwards.

3. Methodology For the purpose of this study, the target group is composed of persons below eighteen living in Uganda who have physical, sensory, intellectual or psychosocial disabilities resulting from interactions with environmental and attitudinal barriers. A mix of quantitative and qualitative research methods were used to analyse the situation. The desk research, consisting of the gathering of statistics, analysis of the role of Government Institutions, laws and policies as well as the mapping of programmes, provided a theoretical understanding of the situation. Key informant interviews and on-site visits facilitated the collection of factual information.

4. Findings CwDs are one of the most marginalized and disadvantaged groups in society. Understanding their current situation by assessing the extent to which their rights are realised in Uganda, reviewing available statistical information, analysing the regulatory and institutional frameworks and mapping programmes was of paramount importance. It revealed a gap in addressing or meeting the needs of CwDs by duty-bearers and key stakeholders.

Table 1: Measuring Disability Prevalence Measuring Disability Prevalence Measuring the disability prevalence is problematic for a number of reasons: i) there are 12

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda various definitions of disability, with an ongoing shift from a medical to a social and rightsbased model of disability, ii) differing individual and cultural perceptions of what impairments and disabilities imply, and iii) design of inadequate data collection tools (wording and number of questions relating to disability varies in different survey and questionnaires).

4.1.

Statistics Relating to Children with Disabilities Living in Uganda Data relating to CwDs is scarce and to some extent unreliable. Significant gaps in information are the lack of disaggregation of statistics by gender and types of disabilities and the inexistence of national and accurate data in other areas than education. Based on estimations, the child disability prevalence is about 13% 1, i.e. approximately 2.5 million children live with some form of disability in Uganda. The disability prevalence varies across the country: the Northern region appears to have the highest rate while the Eastern and Central regions have the lowest rates.

The statistical information available in Uganda indicates extremely low enrolment and completion of primary and secondary schools by CwDs. In fact, only about 9% of CwDs at school going age attend primary school, compared with a National average of 92%2, and only 6% of them continue studying in secondary schools (National average: 25%).

Table 2: Spotlight - Gulu Primary School Spotlight: Gulu Primary School Gulu Primary School is a mainstream school with a unit for blind and visually impaired children. Pupils with disabilities and children without disabilities attend the class together.

The CwDs are active participants in all courses and non-disabled children are encouraged to assist their disabled peers when necessary. Pupils with disabilities also have specific courses tailored for them, for example how to read and take notes in Braille (a tactile writing system used for the blind and visually impaired).

4.2.

Laws and Policies Relating to Children with Disabilities Living in Uganda The analysis of the regulatory framework shows that Uganda has broadly domesticated the rights of CwDs enshrined in both the CRC and CRPD. Some provisions have been included in the 1995 Constitution and in most of the laws and policies established to promote and protect the rights of persons with disabilities (PwDs) or of children.

However, the laws and policies are not fully

A thirteen year old visually impaired boy attending Gulu Primary School: He started school in 2007 when he was six and he likes it because he can now take care of himself. He finds it easy to get along with his classmates and his best friend is a sighted pupil. His favourite subject is mathematics because it is easy to learn. He wants to become a teacher or a lawyer.

1

Uganda Bureau of Statistics (UBOS), Ugandan Population and Housing Census, Fountain Publishers, Uganda, 2005.

2

Source: MoES: Uganda Education Statistical Abstract 2009, 2010 and 2011.

13

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda implemented because of limited budget resource allocation and there is limited attention paid to the specific needs and rights of children with disabilities. Additionally, when CwDs’ rights are acknowledged, some of the provisions to realise them are not aligned to the CRC and CRPD requirements. For example, recent or about to be adopted Ugandan laws and policies identify inclusive education as a possible way forward (CRPD Article 24), but government policies continue to actively promote special needs education and the establishment of special schools. To conclude, the rights of CwDs are recognised by the Ugandan regulatory framework, but the measures to realise them are partly contradictory with international conventions, if specified at all.

4.3.

Programmes and Active Stakeholders Working in the Disability Field in Uganda Various stakeholders are active in the disability field in Uganda. Several UN agencies, such as the A seven year old blind girl attending Gulu Primary School: She started school in 2011 Office of the High Commissioner for Human when she was five and a half years old. She Rights, the United Nations Population Fund, and likes it because she has new teachers and the World Health Organization, have developed got a certificate. She gets along well with programmes targeting persons and children with her classmates. Her favourite subject is disabilities.

Approximately ten donor science. Her biggest dream is to have a big home. organisations, such as national development agencies and foundations, fund disability programmes. International and Ugandan NGOs also run several programmes targeting CwDs living in Uganda. There is a strong Disability Movement in Uganda and the national DPOs, such as the National Union of Disabled Persons of Uganda (NUDIPU) and the National Union of Women with Disabilities of Uganda (NUWODU), are relatively well structured and representative of all categories of PwDs. They have also had significant advocacy successes over the years, such as the allocation of five seats in the Parliament of Uganda to represent PwDs from the five regions of the country. However, there is only one Ugandan organisation for CwDs, the Uganda Society for Disabled Children (USDC).

Table 3: Key Findings Key Findings Statistics, Laws and Policies Relating to CwDs Living in Uganda: - The child disability prevalence is approximately 13%, or about 2.5 million children live with some form of disability in Uganda.

- About 9% of boys and girls of school going age with disabilities attend primary school and only 6% of them continue studying in secondary school.

- Uganda ratified the Convention on the Rights of the Child (CRC) in 1990.

- Uganda ratified the Convention on the Rights of persons with Disabilities (CRPD) in 2008.

Challenges to the Implementation of the Rights of CwDs; - Discriminatory attitudes and behaviours towards CwDs. - A serious gap in implementation of the Ugandan regulatory framework.

- An institutional framework weakened by lack of coordination between Government Institutions, non-governmental organisations and Civil Society Organisations of

14

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Persons with Disabilities (DPOs).

A fragmented programmatic approach resulting in gaps in the responses provided by the duty-bearers

5. Challenges to the Implementation of the Rights of Children with Disabilities A number of barriers to the realisation of the CwDs’ rights were identified in the course of the study. Although the Ugandan regulatory framework mostly domesticates the CRPD and CRC, there is a need to clarify the measures to be taken and the responsibility of the Government Institutions to realise the rights of CwDs. The protection mechanism for CwDs is also weak and existing laws and policies are not enforced to their full potential. Finally, lack of coordination between national and local Government Institutions and gaps in knowledge, understanding and capacities of the organisations of the Disability and Child Movement have partly lead to a fragmentation of the programmatic approach answering the needs of CwDs. The current programmatic responses established by the Government Institutions and key organisations of the Disability and Child Movement are limited in scale and scope. They only address the immediate and obvious needs of CwDs, with only the easy-to-reach children benefitting from these projects. The structural barriers are therefore not addressed, although this is the only way forward to make a profound and sustainable change over time in the life of CwDs. The full realisation of the rights of CwDs will not be realised, unless collective and individual efforts are driven forward by all stakeholders with a leading organisation committed to this goal.

Furthermore, throughout the course of the research study, one of the clearest findings was the ongoing presence of stigmatizing attitudes which lead to rejection, neglect, denial of access to basic services, abuse and marginalization of persons and children with disabilities.

This pattern of behaviours based on misconceptions and stigmatisation is associated with disability and dependent on what communities traditionally think of persons and children with disabilities. In conclusion, it can be reasonably extrapolated that negative social norms relating to disability are widely spread in the Ugandan society which leads to their discrimination. Changing these perceptions requires the collective and individual efforts of all stakeholders to promote and protect the rights of CwDs. Table 4: Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities The CRC and the CRPD challenge charitable approaches that regard CwDs as passive recipients of care and protection. Instead, the Conventions demand recognition of each child as a full member of her or his family, community and society. This entails a focus not on traditional notions of ‘rescuing’ the child, but on investment in removing the physical, cultural, economic, communication, mobility and attitudinal barriers that impede the realization of the child’s rights – including the right to active involvement in the making of 15

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda decisions that affect children’s daily lives.

UNICEF: State of the World’s Children 2013 – Children with Disabilities

6. Key Recommendations for UNICEF Uganda The review of statistical information, the analysis of the institutional and regulatory frameworks and the mapping of programmes have led to a stronger understanding of the situation of CwDs living in Uganda and to the identification of gaps in information and unfulfilled needs of CwDs. Based on the findings of this research study, several recommendations have been produced with the aim to provide UNICEF Uganda with potential initiatives that can be conducted in the framework of their strategic programming from 2015 onwards.

The situation of CwDs is evolving over time. Assessing their needs and the realisation of their rights should be an on-going process rather than a one off exercise. This requires the consultation of CwDs and conducting of survey and assessment exercises. Both would allow UNICEF Uganda and its partner organisations to design evidence-based initiatives.

The full realisation of the human rights of CwDs enshrined in the CRC and CRPD cannot be achieved without the establishment of strong and sustainable regulatory and institutional frameworks. Laws and policies must domesticate the provisions laid down in both Conventions to guide their realisation in practice. The local and national Government institutions must be granted with powers and capacities to fulfil their role in leading the implementation of the rights of CwDs, while key NGOs and DPOs of the Child and Disability movement should be empowered to continue advocating for them.

Finally, in the course of the study, it has been evidenced that the current programmatic approach is fragmented and lacks sustainability over time. To remedy this situation, UNICEF Uganda should mainstream the perspective of CwDs in all its programmes, support the government to holistically address needs of CWDs and build the capacity of the organisations working with CwDs. Focus areas of future programmes should address the living conditions and welfare of CwDs by ensuring full access to services, including health services, (re)habilitation and education, changing social norms and raising awareness of the communities to no longer accept and condone stigmatisation and discrimination on the ground of disability. A focus should be placed on designing and running disability preventive interventions, targeting children living in Uganda. Empowering CwDs should be at the core of the design and implementation of all programmes and the role of parents, as primary caretaker of a CwD, should be duly acknowledged. All programmes should be designed, implemented and monitored in close collaboration with all stakeholders working with CwDs. A stronger programmatic approach is needed to tackle the barriers to the realisation of the human rights of CwDs in Uganda and to ensure that CWDs no longer remain invisible.

To conclude, despite all that has been stated in the report and the briefing, CwDs are first and foremost children. They have the same needs as all children and while they in theory have the same rights as others, CwDs living in Uganda are still waiting for the realization of their basic rights.

16

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Table 5: Ten Key Recommendations for UNICEF Uganda         



Ten Key Recommendations for UNICEF Uganda Actively consult and listen to CwDs on issues concerning them on an ongoing basis Improve statistical information related to CwDs with the Uganda Bureau of Statistics Review and enforce the Ugandan legal and policy framework Advocate for increased budget allocations to responsible Government Institutions, earmarked for CwDs in related programmes Coordinate efforts among local and national Government Institutions Create a national partnership on CwDs led by UNICEF Uganda and the Ministry of Gender, Labour and Social Development (MoGLSD) Build the knowledge on the needs and rights of CwDs and strengthen the capacities of key stakeholders and duty-bearers Mainstream the perspective of CwDs in all UNICEF Uganda programmes and surveys Design and implement programmes relating to disability prevention, health and (re)habilitation, education, social norms change and awareness-raising to ensure that CWDs are visible and have full access to services Partner with organizations of the Child and Disability Movement

17

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 1: Introduction This Situational Analysis on the Rights of Children with Disabilities (CwDs) in Uganda, hereafter referred to as the Disability SitAn, concludes the research study on CwDs living in Uganda carried out on behalf of the United Nations Children’s Fund (UNICEF) in Uganda.

1. Context UNICEF is the United Nations (UN) agency responsible for addressing the long-term needs of children and upholding their human rights in line with the UN Convention on the Rights of the Child (CRC). Its mandate covers all children worldwide with a focus on marginalised groups and this includes fighting against discrimination on the basis of disability (CRC Article 2). Integrating the perspective of CwDs is part of UNICEF’s core work and this has gained increasing momentum over the past couple of years, in an international context that has become more aware of and supportive of disability rights.

In addition to the human rights based approach to children contained in the CRC, a relatively new international legal framework, the UN Convention on the Rights of Persons with Disabilities (CRPD), was adopted in 2006. The CRPD provides the universal standard for the human rights of all persons with disabilities (PwDs) worldwide. The CRPD also includes specific obligations to ensure that the rights of CwDs (Article 7) are protected and reaffirms the full enjoyment of their human rights and fundamental freedoms on an equal basis with other children. In response to the CRPD, UNICEF has engaged in various activities and is coordinating the activities of the Global Partnership on children with disabilities (GPcwd), a global network promoting the human rights of disabled children. In 2013 UNICEF devoted its annual State of the World’s Children flagship report to disability and this exercise to gather information about and analyse the situation of CwDs highlighted the lack of accurate data about these “invisible children”.

The policy context in Uganda is forward looking and rights based. In addition to signing and ratifying both UN Conventions (the CRC has been part of the Ugandan legislative and policy framework since 1990 and Uganda ratified the CRPD and its Optional Protocol without any reservation in 2008), the human rights of PwDs are recognised in the Constitution of Uganda, 1995, and the government has enacted progressive disability legislation (for example, the PwDs Act 2006). Another development has been the election of a Ugandan representative to the CRPD Committee, which in itself represents a positive commitment to address the situation of PwDs in the country. In its working relationship with national institutions and partners, UNICEF Uganda has also received very positive feedback from decision-makers and duty bearers - Members of the Parliament of Uganda and the Ministry of Gender, Labour and Social Development (MoGLSD), as lead Ministry, have demonstrated a deep interest in the topic.

2. Objective In this favourable international and national context, UNICEF Uganda has identified a lack of knowledge and awareness about the status of CwDs’ human rights in Uganda as the first and

18

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda immediate challenge and has therefore decided to carry out a research study to explore the situation of CwDs living in Uganda.

The purpose of this research is to gather all existing information about CwDs living in Uganda. The study aim is not to create new knowledge but rather to analyse and make sense of the fragmented information already available. This research coincides with UNICEF Uganda’s strategy evaluation and the findings will be used by the UNICEF office to start planning a programmatic response to the issues faced by CwDs from 2015 onwards.

As an initial outcome, a review of the statistical information and data relating to CwDs has provided firstly an estimation of the disability and child disability prevalence in Uganda, which is then compared with international rates, and secondly of access to education – the enrolment of CwDs in pre-primary, primary and secondary schools. With the exception of these two major areas of statistical information, there is very little other data available. So there is a significant gap in data and research relating to the everyday life of CwDs. This concerns, among others, the causes of disability, the birth registration status of CwDs, the enjoyment of their human rights, the links between disability and poverty, the effects of humanitarian crisis on CwDs and their access to health and (re)habilitation services.

The second outcome of this research study consists of an analysis of the Ugandan institutional and regulatory frameworks as well as a mapping of programmes. CRPD Article 4 (1) requires State Parties to take into consideration and implement the rights of PwDs, enshrined in this Convention, by all means at their disposal. This includes the adoption, amendment and review of legislation (Article 4 (1) (a) and (1) (b)) as well as “the protection and promotion of the human rights of PwDs in all policies and programmes” (Article 4 (1) (c)). An analysis of the institutional and regulatory frameworks is therefore an essential aspect of this research. In this way it is possible to identify and assess how the laws and policies support and protect the human rights of CwDs living in Uganda and the types of initiative that the national and local Government Institutions have taken to address their rights and needs. In addition, a review of various programmes, interventions and projects implemented by various key stakeholders operating in this field has been undertaken. These stakeholders include donors, international Non-Governmental Organisations (iNGOs), Ugandan NGOs, Ugandan and foreign Civil Society Organisations of Persons with Disabilities (DPOs). This mapping exercise provides an overview of what has been done in the past, what is currently ongoing, what has been achieved and what has been less successful.

The literature review and analysis reveal the gaps in knowledge and institutional responses targeting CwDs. This is reflected in this Disability SitAn that analyses the extent to which the human rights of CwDs are being met and explains the barriers and bottlenecks that are preventing their full realisation in Uganda. Finally a number of areas are identified where there is the potential for future intervention and a set of recommendations for future implementation by UNICEF Uganda.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 2: Methodology This research study on CwDs living in Uganda commissioned by UNICEF Uganda was conducted between November 2013 and April 2014. The scope of the research covers all CwDs aged zero to eighteen living in Uganda.

1. Scope of the Research Study: Target Group and Geographical Coverage CRC Article 1 defines as a child “any human being below the age of eighteen years”, which is also the age of majority in Uganda. In the CRPD Preamble, disability is considered as an “evolving concept […] that results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (CRPD (e)). For the purpose of this research, the target group will therefore be composed of persons below eighteen who have physical, sensory, intellectual or psychosocial disabilities.

The research study covers the territory of the Republic of Uganda and as stated above, any child with a disability living in Uganda will be covered by this study. Most of the key informant interviews took place in Kampala where the majority of stakeholders are based. A field visit to Gulu was also organised.

2. Research Methods The CRPD and CRC, which define the human rights that any child living with a disability is entitled to enjoy and exercise worldwide, are the foundations of this research study and Disability SitAn. Both documents constitute the theoretical framework against which the situation of CwDs living in Uganda is assessed.

A mix of quantitative and qualitative research methods were used for the empirical analysis of the situation. Quantitative research allowed the gathering of statistical knowledge and an initial evaluation of the phenomenon, while qualitative research provided an in-depth assessment of the situation and how stakeholders perceive it.

Desk research and field interviews were used with the aim to triangulate the data. The desk research, consisting of the gathering of statistics, analysis of the role of Government Institutions, laws and policies as well as the mapping of programmes, provided a theoretical understanding of the situation. Later key informant interviews facilitated the collection of factual information from the field. This two-pronged approach provided a comprehensive picture of the situation of CwDs living in Uganda. The analysis revealed gaps in both the information available and in the institutional responses structured to target them.

2.1.

Data Collection on Children with Disabilities Living in Uganda During the first stage of the study, statistics existing at both global and national level were collected. The majority of international disability statistics are produced by the UN agencies 20

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda and consists of the following: the World Health Organisation (WHO)/World Bank World Report on Disability 2011, the WHO World Health Survey of 2002-04, the WHO Global Burden of Disease Report 2004, the UNICEF State of the World’s Children 2013 – CwDs and the Education For All (EFA) Global Monitoring Report 2010 - Reaching the Marginalised.

Nationally, sources of statistical information are mainly provided by the Uganda Bureau of Statistics (UBOS) and contained in the Uganda Population and Housing Census / Analytical Report on Gender and Special Interest Groups 2002, the Uganda Demographic and Health Surveys (UDHS) 2006 and 2011 as well as the Ugandan National Household Surveys (UNHS) 2005/06 and 2009/10. The Ministry of Education and Sports (MoES) also releases a Uganda Education Statistical Abstract every year. The African Child Policy Forum (ACPF) has produced a unique set of data relating to CwDs with its Report Children with Disabilities in Uganda: The Hidden Reality.

2.2.

Analysis of the Ugandan Institutional and Regulatory Frameworks Legislative and policy documents were analysed as a way to identify how they protect the human rights of CwDs and how they define the responsibility of the local and national Government Institutions in relation to CwDs. Although the influence of international law was taken into consideration, the main focus was on Ugandan legislation and policies since they have a direct effect on the situation of CwDs living in Uganda. The Constitution of the Republic of Uganda, 19953, was carefully reviewed because it sets out the fundamental rights and precedents according to which the State of Uganda is organised. The National Development Plan (NDP) 2005/06 – 2009/10, 20104, sets the overall policy framework for Uganda. The Local Government Act, 19975, the National Council for Disability (NCD) Act, 20036, the National Council for Children (NCC) Act, 19967, the Equal Opportunities Commission (EOC) Act, 2007 8, and the Uganda National Institute of Special Education (UNISE) Act, 1995,9 amended by the University and Other Tertiary Institutions Act, 2001 10, were examined to assess the role, powers and structure of local Government Institutions and of each Government Ministry and Agency. Those pieces of legislation whose scope cover disability matters (i.e. the PwDs Act11 and National Policy on Disability in Uganda from 200612) and child issues (i.e the Children Act, 199613, the Child Labour Policy, 2006 14, and the

3

Government of Uganda, Constitution of the Republic of Uganda, 1995.

4

Government of Uganda, National Development Plan 2005/06 – 2009/10, 2010.

5

Government of Uganda, Local Government Act, 1997.

6

Government of Uganda, National Council for Disability Act, 2003.

7

Government of Uganda, National Council for Children Act, 1996.

Government of Uganda, Equal Opportunities Commission Act, 2007.

8 9

Government of Uganda, Uganda National Institute of Special Education Act, 1995.

Government of Uganda, University and Other Tertiary Institutions Act, 2001.

11 Government of Uganda, Persons with Disabilities Act, 2006.

10

12 13 14

Government of Uganda, National Policy on Disability in Uganda, 2006.

Government of Uganda, Children Act, 1996.

Government of Uganda, Child Labour Policy, 2006.

21

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda National Orphans and Other Vulnerable Children Policy, 2004 15) were then considered.

Finally the laws and policies relating to education, such as the Education Act, 200816, the Draft Non Formal Education Policy for Educationally Disadvantaged Children, 2012 17, and the Draft Policy on Special Needs and Inclusive Education (SN&IE), 201118, and to health - the Second National Health Policy (NHP II), 2010 19,- were analysed.

2.3.

Mapping of Programmatic Initiatives

A mapping of programmes, interventions and projects implemented by various key stakeholders operating in the disability and child field in Uganda was undertaken. They are organisations such as international agencies, foreign development agencies, foundations, iNGOS, Ugandan NGOs, Ugandan and foreign DPOs. A literature review provided the primary source of information and the Key Information Interviews (KII) were an opportunity to gather additional information about the impact of on-going programmes. Due to the fragmentation of information and lack of specific and relevant documentation relating to these interventions targeting CwDs, an online survey was set up and opened for contributions from mid-December 2013 to the end of January 2014.

This was sent to approximately one hundred organisations and about thirty responses were collected.

2.4.

Key Informant Interviews

Field interviews were conducted to compare how the theoretical situation corresponds to the reality encountered by CwDs living in Uganda. This was also an opportunity to gather additional information about the implementation of laws and policies, and the impact of ongoing programmes run by iNGOs and similar organisations. Semi-structured interviews were held, as the purpose is to collect a consistent set of complementary information and personal experience on data and statistics, law and policies as well as programmes and actions from a variety of stakeholders. They took the form of one-to-one interviews.

Fifteen interviews were conducted with various key stakeholders: - Ugandan Government Institutions and Agencies: the MoGLSD / Directorate of Social Protection / Department of Elderly and Disability 20; the MoES / SN&IE Department21;

15

Government of Uganda, National Orphans and Other Vulnerable Children Policy, 2004.

16

Ministry of Education and Sports (MoES), Education (Pre-Primary, Primary and Post-Primary) Act, 2008.

Ministry of Education and Sports (MoES), Draft Non Formal Education Policy for Educationally Disadvantaged Children, 2012.

18 Ministry of Education and Sports (MoES), Draft Policy on Special Needs and IE, 2011.

17

19

Ministry of Health (MoH), Second National Health Policy, 2010.

Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

20

21

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

22

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

-

-

-

the Ministry of Health (MoH) / Disability Rehabilitation and Prevention Department22; UBOS23; NCD24; and a member of the Parliament of Uganda25.

Foreign Development Aid Agencies: the Norwegian Agency for Development Cooperation (NORAD)26; and the United-States Agency for International Development (USAID)27. iNGOs: Plan28 and Save the Children29.

Ugandan NGOs for CwDs: the Uganda Society for Disabled Children (USDC) 30.

Ugandan DPOs: the National Union of Disabled Persons of Uganda (NUDIPU) 31; the National Union of Women with Disabilities of Uganda (NUWODU) 32 and the Uganda Parents of Persons with Intellectual Disabilities (UPPID).33 A not-for-profit hospital and (re)habilitation centre: the Children’s Surgical Rehabilitation Hospital (CoRSU)34.

2.5.

Field Research

Gulu was identified as the most interesting and appropriate District for this study for several reasons. There is evidence that a higher proportion of people and children with disabilities live in the Northern part of the country, as a consequence of twenty years of civil war.

Additionally it also corresponds to UNICEF Uganda’s geographical area of intervention and the majority of donors target the North of Uganda.

Four representatives from local Government Institutions (Gulu District / Department of Community Development35 and Gulu District Council for Disability 36) and from DPOs (Gulu

22 23

Bongole, Rose, Ministry of Health (MoH), Interviewed by Nadège Riche, 2014.

Helen Nviiri, Pamela Kakande, Uganda Bureau of Statistics (UBOS), interviewed by Nadège Riche, 2013.

24

Adong, Caroline, National Council for Disability (NCD), Interviewed by Nadège Riche, 2013.

Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

25

26

Engh, Ida-Eline, Agencies: the Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

27

Muwanga, Catherine, United-States Agency for International Development (USAID), Interviewed by Nadège Riche, 2014.

28 29

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

Bakundana, Flavia, Heijnen-Maathuis, Els, Save the Children, Interviewed by Nadège Riche, 2013.

30

Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

32 Asamo, Helen Grace, National Union of Women with Disability in Uganda (NUWODU), Interviewed by Nadège Riche, 2014.

33 Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

31

34 35 36

Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

Okwera, Albert, Gulu District Council for Disability, Interviewed by Nadège Riche, 2013.

23

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Disabled Persons Union (GDPU)37 and Gulu Women with Disabilities Union (GUWODU))38 were interviewed.

Gulu Primary School which is a mainstream school with a unit for blind and visually impaired children was also visited. Pupils with disabilities and children without disabilities attend classes together where they study all courses such as English or History and non-disabled children are encouraged to assist their disabled peers as and when necessary. Pupils with disabilities also take specific courses to learn how to read and take notes in Braille. The visit to the School began with two consecutive discussions with the Head Teacher and the Head of the Unit for Blind Children about the successes of having blind and partially sighted children completing primary school and the challenges faced by the school to keep these children in school and learning. Four pupils with visual disabilities were interviewed to hear the testimonies of CwDs themselves, talking about their life. For this purpose, a specific CwDs-friendly interview process was designed: an ice breaker was introduced to mix and mingle before the individual interviews with the four pupils actually took place.

3. Study Limitations Although at the design stage of this study, the expectation had been to review a certain number of laws and policies, no copies of the Draft Mental Health Policy or Guidelines for Provision of Assistive Devices could be found. The main challenge in conducting the institutional and reglatory analysis was the unavailability of legal documents. It was therefore assumed that, if none of the key stakeholders has a copy of these, then they are not referred to for implementation. This might explain to a limited extent the serious gap in implementation that has been identified.

The fragmentation of information and the lack of relevant documentation made it problematic to collect accurate data about ongoing or successful programmes. For that reason, several complementary methods, desk research and KII, were initially planned but further into the research cycle it became necessary to set-up an online survey to provide additional information. This was successful as none of the programmes presented by the people responding were identified during the literature review phase.

The major limitation of this study however lies in the lack of any large-scale and representative consultation of CwDs living in Uganda. Only four pupils with disabilities were interviewed, all living in the same region and having the same disability. The younger CwDs did not speak much English, resulting in their teacher, who was present during all the interviews, acting as a translator when needed. The interviewer at times wondered if she answered on behalf of the children or if she was only translating. To conclude, this study did not explore and identify what CwDs themselves see as the most pressing needs and issues in their lives.

37

Ojok, Simon, Gulu Disabled People Union (GDPU), Interviewed by Nadège Riche, 2013.

38

Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

24

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 3: Summary and Analysis of Statistics Relating to Children with Disabilities in Uganda CRPD Article 31 requires State Parties to “collect appropriate information, including statistical and research data� relating to PwDs. The collection and dissemination of disaggregated information and data relating to PwDs are clearly important. It enables an assessment of the overall situation - i.e the needs of the population of PwDs, the barriers they face in accessing their rights and the demand for services and their provision by the public administration and the private sector. This information also provides the basis for policy formulation, implementation and evaluation. For this reason the first step of this research study has been to carefully review and analyse the available statistical information and data.

This report does not aim to create new data sets, but rather to present the statistical information available at both the worldwide and Ugandan levels. Relevant sources of information used include studies and reports issued by the UN and international bodies such as UNICEF, the UN Educational, Scientific and Cultural Organisation (UNESCO), the WHO and the World Bank. National sources of information were also reviewed, and in particular the statistics produced by UBOS and the results of the surveys conducted by the Uganda MoGLSD and MoES. The main issues associated with the collection of disability statistics are considered. The presentation of the relevant statistics begins with an analysis of the disability and child disability prevalence in Uganda, which are compared with international rates. This is followed by a focus on access to education - enrolment in pre-primary, primary and secondary schools of CwDs. With the exception of these two major areas of statistical information, there is very little other data available. Finally, other significant figures relating to the everyday life of CwDs (i.e. the causes of disability, the birth registration status of CwDs living in Uganda, the enjoyment of human rights, the links between disability and poverty, the effects of humanitarian crisis on CwDs and the access to health and (re)habilitation services) are presented.

Based on the statistical information relating to the situation of CwDs living in Uganda reviewed in this Report, an analysis of the shortcomings and gaps in information and the need for additional data is presented.

1. Main Sources of Information The statistical information relating to persons and children with disabilities presented and analysed in this Report come from international and national sources.

1.1.

International Sources of Information

The majority of international disability statistics are produced by the UN agencies such as UNESCO, UNICEF and WHO and by the World Bank.

The UN Disability Statistics Database (DISTAT) refers to available national statistics but is not up-to-date. For example, it refers to the 1991 Uganda Population and Housing Census,

25

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda although a census was conducted in 2002 and national surveys carried out in 2006, 2010 and 2011. Consequently statistics from DISTAT were disregarded for this Report.

The WHO/World Bank World Report on Disability 2011 is the most important international reference source for disability issues: “it assembles the best available scientific information on disability to improve the lives of people with disabilities and facilitate the implementation of the CRPD”39. Statistics presented in this WHO/World Bank Report are based on multiple sources - country report estimations of the disability prevalence in their population, the WHO World Health Survey of 2002-04 and the WHO Global Burden of Disease Report 2004.

Of all these sources, only the WHO Global Burden of Disease Report 2004 aggregates statistics relating to CwDs of zero to fourteen years of age. Data presented in the WHO/World Bank World Report on Disability 2011 covers the disability prevalence worldwide and a wide range of topics (e.g. education). Reliance on this statistical source is unavoidable as there have been no other global aggregation of surveys since the publication of this Report and it therefore provides the main basis for this review and analysis of statistics. It is, however, important to consider the limitations of this work. The figures date back to 2004 and the situation has changed and evolved during the last decade. Children aged fifteen years and above fall in the category of adults (aged between fifteen and fifty nine years). Therefore the data relating to CwDs presented in the WHO Global Burden of Disease Report 2004 does not include all CwDs. The WHO and the World Bank also recognise the limitations of this Report and “the prevalence estimates […] should be taken not as definitive but as reflecting current knowledge and available data.”40 The UNICEF State of the World’s Children 2013 – CwDs also contains statistics relating to the child disability prevalence worldwide. In this study UNICEF has not conducted any new surveys to collect data relating to CwDs but has used existing figures. These sources for the State of the World Children 2013 - CwDs are similar to those used in the WHO/World Bank World Report on Disability 2011, and therefore have similar limitations as presented above.

UNESCO leads the EFA Movement which is a global commitment to provide quality basic education for all children, youth and adults. At the World Education Forum in 2000 in Dakar, 164 governments identified six main goals to be achieved by 2015 and various stakeholders (development agencies, Non-Governmental Organisations (NGOs), Civil Society Organisations (CSOs) and private organisations) have joined the collective commitment enshrined in the Dakar Framework for Action since then. In order to accelerate education for all in Africa, the EFA Movement launched the “Big Push”, an initiative aiming to support selected and advanced African countries to reach these six goals by 2015. A first round comprising eight countries started in March 2013 and then a second round of eleven countries, including Uganda, was initiated in October 2013. Uganda has therefore committed itself to accelerate its efforts towards education for all, including CwDs, in the coming years.

The EFA Movement also produces an annual publication presenting the results in relation to a specific issue. The EFA Global Monitoring Report 2010 - Reaching the Marginalised is considered to be the most recognised international source of information in terms of access

39

World Health Organisation (WHO), World Bank, Summary World Report on Disability, Geneva: WHO/World Bank, 2011, p. 7.

40 World Health Organisation (WHO), World Bank, World Report on Disability 2011, Geneva: WHO/World Bank, 2011, p. 28.

26

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda to education for CwDs. Data presented in this EFA Report is both reliable and comparable because most of the statistics were collected using the UNESCO Institute for Statistics (UIS) standard questionnaires. Data was collected for the school year ending in 2008 and processed for presentation in May 2010 by the UNESCO UIS41.

1.2.

National Sources of Information

The censuses and surveys used to collect national statistics of persons and children with disabilities living in Uganda are carried out by national public institutions.

UBOS, the public body in charge of statistics in Uganda, has conducted one census and several surveys capturing the disability prevalence among the Ugandan population.

The latest such national census was conducted by UBOS in 2002. Another census was initially planned for the financial year 2011/12 but has now been rescheduled for 2013/14 due to a lack of funding. The Uganda Population and Housing Census / Analytical Report on Gender and Special Interest Groups 2002 presents data relating to women, young people, older people, children and PwDs. Information about CwDs is based on children aged between five and seventeen years as UBOS considers that it is difficult to assess the disability of a child below the age of five. This information from the Census of 2002 is now therefore twelve years old and not representative of the whole population of CwDs. However, the information collected is the only source to date for which the same definitions of disability and survey questions have been applied nationwide. It is for this reason that this data has been used in the Intermediary Report – Summary and Analysis of Statistics.

The UDHS 2006 and 2011 are part of a global framework, the Demographic and Health Survey Project. Both surveys follow those conducted in 1988/89, 1995 and 2000/01. Only the UDHS 2006 and 2011 have a nationwide scope and have therefore been used in the framework of the Intermediary Report – Summary and Analysis of Statistics. Both surveys aim to collect data on demography and health and one of the specific objectives is to gather information relating to disability. The surveys have been conducted on a representative sample of about 10 000 households living in Uganda. The set of six questions relating to disability was designed using the guidelines of the UN Washington Group on Disability Statistics (Refer to Section C). The questions reflect a partial shift away from an “impairment” to a “limitation in functioning” approach. As with the national census of 2002, CwDs are counted from five years upwards and consequently both surveys again underestimate the number of CwDs living in Uganda.

The UNHS 2005/06 and 2009/10 intend to “collect high quality and timely data on demographic, social and economic characteristics”42. Both surveys are composed of six modules: the Socio-Economic Module looks at household characteristics and individual characteristics of household members, including disability. The survey questionnaires of the UNHS 2005/06 and UNHS 2009/10 include a section on “disability and malaria” to assess the difficulties faced by people in performing certain types of daily life tasks (e.g. seeing).

41

United Nations Educational, Scientific and Cultural Organisation (UNESCO), Education for All (EFA) Global Monitoring 2010 - Report Reaching the Marginalized, 2010, p. 296.

42 Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys (UNHS) 2009/10, Socio-Economic Module, Abridged Report, November 2010, p. 1.

27

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Although the questions relating to disability are based on functional difficulties, the title of the module, which links disability with the malaria disease, reflects a medical approach to disability. Despite this shortcoming, the statistical data relating to CwDs collected in the UNHS 2005/06 and 2011 are presented in the Intermediary Report – Summary and Analysis of Statistics. Another UNHS is planned for the financial year 2012/13 but no questions relating to disability are to be included in this survey43.

The census and these surveys are the best national sources of information available to estimate the –child- disability prevalence among the Ugandan population. However, the methodologies used differ across these studies. UBOS has moved from an “impairment” to a “difficulties in functioning” approach to disability. So in the Census 2002, disability is considered as “a condition which denies a person a normal economic and social life, which has lasted or is expected to last 6 months or more”, while, in the UNHS 2009/10, “disability is defined as permanent and substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participations.” The set of about six questions used in the UNHS and UDHS focuses on the person’s difficulties in performing certain tasks, rather than his/her impairment(s) or condition(s). For example questions ask: “Do you have difficulties in seeing / hearing / walking or climbing stairs / remembering or concentrating / self-care / communicating?”

Compared to the UNHS 2009/10 and UDHS 20006 and 2001, the UNHS 2005/06 has a larger set of questions: the person is asked if s/he has mobility problems, psychosocial or emotional difficulties or difficulties in taking part in social activities or learning 44. The use of various methodologies and definitions across these studies suggests that the variation in the -child- disability prevalence rate between the census and these different surveys is most probably due to an improvement in data collection, rather than a steep increase in the number of persons and children with disabilities living in Uganda45.

In addition to the UBOS census and surveys, the MoES publishes the Uganda Education Statistical Abstract every year. This publication presents the number of children, pupils and students enrolled in pre-primary, primary, secondary, post-primary, non-formal and tertiary institutions in Uganda. Since 2007, a set of questions target four categories of CwDs: physical, visual, hearing and intellectual impairments as well as people with multiple “handicap”.46 Only the Uganda Education Statistical Abstract 2009, 2010 and 2011 will be considered for this Study, as no copies of the 2007 and 2008 Abstracts could be found. Data is based on voluntary responses to the Annual School Census form from both public and private schools in Uganda. The response rate, including pre-primary, primary, secondary and post-secondary schools, was 71.4% in 2009 but is not available for 2010 and 2011. The

43

Helen Nviiri, Pamela Kakande, Uganda Bureau of Statistics (UBOS), interviewed by Nadège Riche, 2013.

Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys 2005/06 - Report on the SocioEconomic Module, 2006, p. 174.

44

45

Northern Uganda experienced war for twenty years. The Western and Northern regions have seen an increase in the number of refugees due to conflicts in the neighbouring countries. This suggests that the number of persons and children with disabilities living in Uganda should have indeed increased in the past decade. However, no evidence could be found in the course of this Study to confirm or invalidate this statement.

46

Christopher Wimon Okecho, Ministry of Education and Sports (MoES), interviewed by Nadège Riche, 2013.

28

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda MoES, however, points out that there are strong limitations regarding the response rates from schools, and in particular for privately-operated institutions. Statistical information about attendance and completion of primary and secondary school by children and CwDs will be presented since they are the only available figures for Uganda. However, it must be emphasised that the figures are only a partial reflection of the actual situation.

In 2012, the MoGLSD carried out a mapping exercise of the OVC47, as part of the SunriseOVC project of USAID/Uganda, which includes CwDs, living in the thirty-two “new” districts 48 which have now been created. Various problems affected the data collection - certain areas were too remote to be reached, there was a lack of computers and technical facilities to enter the data and there were an insufficient number of collectors to interview people. The MoGLSD Consolidated Report on the OVC Mapping Exercise 2012, however, gives an indication of the number of CwDs living in these districts and it is therefore presented in this Intermediary Report – Summary and Analysis of Statistics.

Finally, in 2011, ACPF conducted a study about the situation of CwDs living in Uganda. The outcomes are presented in the Report called Children with Disabilities in Uganda: The Hidden Reality. This ACPF Study engaged with 540 CwDs and aims to be a representative study of CwDs living in Uganda. Children had various impairments covering the disability spectrum and were aged from nine to seventeen years. They live either with their family or in “unconventional settings (on the streets, in boarding schools or in (re)habilitation centres/institutions)”49 and came from all of the five regions of Uganda. Data collection tools included six focus group discussions, in-depth interviews with key-informants, a day in the life of six CwDs and a literature review. The Study has generated unique quantitative information and is therefore fully considered in this Intermediary Report – Summary and Analysis of Statistics.

1.3.

The Issue of Measuring –Child- Disability Prevalence50

Measuring the disability prevalence world- or country-wide is problematic for a number of reasons. So, for example, there are the various definitions of disability with an ongoing shift from a medical to a social and rights-based model of disability. Differing individual and cultural perceptions of what functional limitations and disabilities imply lead to over- or under-estimation of –child- disability prevalence. The design of data collection tools, the

47

Ministry of Gender, Labour and Social Development (MoGLSD), Consolidated Report on Orphans and Vulnerable Children Mapping Exercise 2012, 2012.

48 These thirty two “new” districts are : Agago, Alebtong, Amudat, Buikwe, Bukomansimbi, Buhweju, Bulambuli, Butambala, Buvuma, Buyende, Gomba, Kalungu, Kibuuku, Kiryandongo, Kole, Kween, Kyankwanzi, Kyegegwa, Lamwo, Luuka, Lwengo, Mitooma, Namayingo, Napak, Ngora, Ntoroko, Nwoya, Otuke, Rubirizi, Serere, Sheema and Zombo.

49 African Child Policy Forum (ACPF), Children with Disabilities in Uganda: The Hidden Reality, Addis Ababa: The African Child Policy Forum, 2011, p. 17.

50

Further information relating to the problems around disability statistics is available in the Chapter 6 Measuring Child Disability of the United Nations Children’s Fund (UNICEF), The State of the World’s Children 2013 - Children with Disabilities, 2013, pp. 63-71.

29

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda wording and number of questions relating to disability included in the different survey questionnaires also affect the quantity and quality of the collected information. The stigma relating to disability also negatively affects the value and resources that are allocated to disability statistics.

“Measuring child disability presents a unique set of challenges. Because children develop and learn to perform basic tasks at different speeds, it can be difficult to assess function and distinguish significant limitations from variations in normal development. The varying nature and severity of disabilities, together with the need to apply age-specific definitions and measures, further complicate data collection efforts. In addition, the poor quality of data on child disability stems, in some cases, from a limited understanding of what disability is in children and, in other cases, from stigma or insufficient investment in improving measurement.”51 To respond to these many challenges, The UN has set up the Washington Group on Disability and Statistics. The Group does not actually produce any data on the disability prevalence in the global population but has as its main objective “the promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys. The aim is to provide basic necessary information on disability which is comparable throughout the world.” The Washington Group on Disability and Statistics uses the WHO International Classification of Functioning, Disability and Health (ICF) to develop its question sets. In 2008, the Group decided to develop “an extended set of questions on environmental factors as they relate to the measurement of [child and youth] disability”52 and established a specific Sub-Working Group for that purpose. In 2011, UNICEF formally joined the Sub-Working Group. It seems that the final question set relating to CwDs was approved in October 2013, although at the time of writing this Report no public information had been made available.

In addition there are a number of issues that are specific to the collection of statistics relating to –child- disability prevalence in Uganda. Some data sources have been quoted in various reports and studies but no original copies can be located. Inadequate financial and human resources restrict the capacities of public institutions to appropriately conduct surveys. CwDs living in Uganda are in many cases “invisible” hidden by their families or communities and therefore excluded from censuses and surveys.

2. Child Disability Prevalence in Uganda 2.1.

Disability Prevalence Worldwide

51

United Nations Children’s Fund (UNICEF), The State of the World’s Children 2013 - Children with Disabilities, 2013, p. 65.

52 United Nations Disability Statistics Database (DISTAT), Washington Group, http://unstats.un.org/unsd/methods/citygroup/washington.htm, 2013, (accessed on 26 November 2013).

30

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The WHO/World Bank World Report on Disability 2011 is the most reliable source of information relating to disability prevalence. It estimates that 15% of the population or over one billion people live with some form of disability worldwide53. Among them, between 110 and 190 million “have very significant difficulties in functioning - the equivalent of disability inferred for conditions such as quadriplegia, severe depression, or blindness”54. Women are more likely to acquire disability in their life course than men for reasons such as “poorer working conditions, poorer access to quality health care, gender-based violence and birth child”55.

In the State of the World 2013 – CwDs, UNICEF concludes that “the estimated number of CwDs between zero and eighteen years ranges from 93 to 150 million depending on the source”56. The WHO Global Burden of Disease Report 2004 estimates that about 5% of the children aged zero to fourteen, or 95 million children, have a moderate or severe disability.57 “ ‘severe’ disability is the equivalent of having blindness, Down syndrome, quadriplegia, severe depression, or active psychosis [while] moderate and severe” [is] the equivalent of having angina, arthritis, low vision or alcohol dependence. Additionally, the WHO/World Bank World Report on Disability 2011 reports that, in low- and middle-income countries, the child disability prevalence varies from 0.4 to 12.7% depending on the study and assessment tool58. The UN Population Information Network estimates that 90% of children with mental disabilities die before the age of 5.

In addition, it is generally considered that disability is more common in low- and middleincome countries and in Africa than in other countries 59. “Out of the 100 million CwDs under five years of age worldwide, 80% live in developing countries” 60 and most of them are in Sub-Saharan Africa61. This also suggests that, due to the young populations in developing countries, disability prevalence will increase in the coming years.

2.2.

Disability Prevalence in Uganda

The disability prevalence among the Ugandan population varies across sources and time.

53

World Health Organisation (WHO), World Bank, World Report on Disability 2011, Geneva: WHO/World Bank, 2011, p. 28.

54

World Health Organisation (WHO), World Bank, World Report on Disability 2011, Geneva: WHO/World Bank, 2011, p. 44.

55

World Health Organisation (WHO), World Bank, World Report on Disability 2011, Geneva: WHO/World Bank, 2011, p. 28.

56

United Nations Children’s Fund (UNICEF), Children and Young People with Disabilities Fact Sheet, May 2013, p. 10.

57 World Health Organization (WHO), Global Burden of Disease Report, 2004, p. 34.

58

World Health Organisation (WHO), World Bank, World Report on Disability 2011, Geneva: WHO/World Bank, 2011, p. 10 59 World Health Organization (WHO), Global Burden of Disease Report, 2004, p. 34.

60

United Nations Children’s Fund (UNICEF), Children and Young People with Disabilities Fact Sheet, May 2013, p. 17.

61 United Nations Educational, Scientific and Cultural Organisation (UNESCO), Education for All (EFA) Global Monitoring 2010 - Report Reaching the Marginalized, 2010, p. 181-182.

31

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda In 2002, the disability rate was estimated at 3.5%. The Census 2002 counted 343,700 women with disabilities or, in other words, 44.1% of the total population of PwDs are women. The Northern Region had the highest disability prevalence (4.8%) while the Western region had the lowest disability rate (2.9 %). Eastern and Central regions had respectively rates of 3.6% and 3.1%.62 Prevalence increased with age and 13% of PwDs has multiple disabilities 63.

Table 6: Population of PwDs per age and impairments, in number (Uganda, 2002) Disability Type

Age 0-17

Age 18-30

Age 31+

Total

Percentage (%)

Physical

79,884

66,862

207,584

354,330

41.9

Deaf dumb [Hearing]

62,958

16,539

48,196

127,693

15.1

Vision [Visual]

36,554

22,484

129,712

188,750

22.3

Speech

18,682

6,736

7,205

32,623

3.9

Mental Retardation [Intellectual]

12,862

7,971

9,205

30,038

3.6

Mental illness

10,421

8,142

12,073

30,636

3.6

Epileptic

11,762

4,891

4,671

21,324

2.5

Rheumatism

3,966

2,709

12,254

18,929

2.2

Non stated [Others]

13,715

7,999

18,804

40,518

4.8

Total

250,804

144,333

449,704

844,841

100.0

Percentage (%)

29.7

17.1

53.2

100.0

-

Source: Ugandan Bureau of Statistics (UBOS), Ugandan Population and Housing Census, Fountain Publishers, Uganda, 2005.

In 2006, the disability prevalence varies from 7% of the population or 3.2 million PwDs living in Uganda according to the UNHS 2005/06 to “20% for persons age five years and above” quoting the UDHS 2006. This variance in the disability rate is largely due to differences in the methodologies used and wording of the survey questions.

The UNHS 2005/06 presents a breakdown of PwDs per type of impairments: Physicallyimpaired people account for the highest proportion of impairment in Uganda (34%). They are followed by visually-impaired (22%) and hearing-impaired people (15%). Other types of

62

Uganda Bureau of Statistics (UBOS), Uganda Population and Housing Census - Analytical Report Gender and Special Interest Groups 2002, 2003, p.96, 97.

63 Uganda Bureau of Statistics (UBOS), Uganda Population and Housing Census - Analytical Report Gender and Special Interest Groups 2002, 2003, p.56.

32

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda impairments considered are people with mental health conditions, persons who are speechimpaired and people who have learning difficulties. The place of residence (urban versus rural) also varies between persons with and without disabilities: 12% of PwDs live in cities whereas this increases to 16% for persons without disabilities. 64 With the UNHS 2009/10 and UDHS 2011, the disability rate similarly varies between 16% and 19% respectively of the population aged above five years. The UNHS 2010/11 also acknowledges that the disability prevalence increases with age.

The variations in disability prevalence across the different studies demonstrate the lack of reliability of statistics in Uganda - so for example the percentage of PwDs has risen by more than ten point over ten years. This is most probably attributable to the shift from an “impairment” approach to a “limitations in functioning” approach and to the improvements in data collection, rather than any actual increase in the number of PwDs living in Uganda.

This trend is also visible internationally reflecting the same issues in collecting accurate data relating to disability.

Comparing the various disability rates of the UBOS census and studies with the international statistics of the WHO and the World Bank, it can be estimated that about 15% of the Ugandan population are PwDs. About five million people live with some form of disabilities in Uganda. This comprises all types of impairments. The disability prevalence varies across the country: the Northern region has the highest rate while the Eastern and Central regions have the lowest rates65. There are also larger numbers of people with physical and sensory impairments (about 70% of the population of PwDs according to UNHS 2005/06). The main gap relating to the disability prevalence information in Uganda is a breakdown by gender - there is a lack of recent data on the number of women with disabilities across the country.

2.3.

Child Disability Prevalence in Uganda

Similarly, the disability prevalence among the child population varies across different sources and time.

The Census 2002 reported that 205,272 children or 2% of the children aged five-seventeen years lived with disabilities - of these, 115,000 are boys (66% of CwDs) and 95,000 are girls (44% of CwDs)66. All together 250,804 CwDs aged between zero to seventeen were counted representing 29.7% of the overall population of children. The number of CwDs disaggregated by the different classifications of impairment has also been extracted by UBOS. They counted 79,884 children with physical disabilities, 62,958 with hearing disabilities, 36,554

64

Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys 2005/06 - Report on the SocioEconomic Module, 2006, p. 130-135.

65 These variations between Northern Uganda and the rest of the country might be explained by the war, which took place in Northern Uganda, and many people acquired disabilities. However, no evidence has been found to confirm or invalidate this statement.

66 Uganda Bureau of Statistics (UBOS), Uganda Population and Housing Census - Analytical Report Gender and Special Interest Groups 2002, 2003, p. 20-22.

33

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda with visual disabilities, 18,682 with speech disabilities, 12,862 with intellectual disabilities, 10,421 with mental health conditions, 11,762 as being epileptic and 3,966 as having rheumatism. A further 13,715 have another form of disability (Table 1)67.

The UNHS 2006 indicates that the child disability prevalence had increased. Again this is mostly due to improvements in data collection. The overall child disability rate aged five to nineteen years is slightly below 10% or 594,703 CwDs, while it falls to less than 5% for children aged five to nine years. Slightly more boys than girls have a disability68. The disability prevalence again varies across the regions: the highest rate can be found in the Northern region, followed by the Eastern and Western regions. The Central region and Kampala have the lowest child disability prevalence 69. Finally, the UNHS 2006 reveals that the age structure differs between the population with and without disabilities: “among all PwDs, children constitute 31%, while for persons without disabilities, children constituted 60% of the population” 70.

The UNHS 2009/10 finds that around 10% of the children aged between five and nineteen live with some form of disability 71.

The child disability prevalence slightly increases with the findings of the UDHS 2011: 12% of children between age five to nine are CwDs while the disability rate for people aged between five and twenty nine is of 13%. 53% of the population of PwDs is aged between six and nineteen years of age 72.

In addition there are various estimations of the numbers of CwDs living in Uganda. UBOS considers that there are 1.7 million CwDs living in Uganda 73, while the NUDIPU estimates that they are between 3 and 3.8 million74. USDC estimates the number of CwDs living in Uganda to be 1.22 million75.

Additionally the Consolidated Report on the OVC Mapping Exercise 2012, conducted by the MoGLSD and supported by UNICEF Uganda, gives an up-to-date picture of the number of CwDs in the thirty-two “new” districts covered by the Study. These figures are not so helpful in isolation. They are, however, considered in this Intermediary Report - Summary and Analysis of Statistics for a reason: further information about CwDs is available but not fully

67

Ugandan Bureau of Statistics (UBOS), Ugandan Population and Housing Census, Fountain Publishers, Uganda, 2005.

68 Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys (UNHS) 2005/06 - Report on the Socio-Economic Module, 2006, p. 130-131.

69

Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys (UNHS) 2005/06 - Report on the Socio-Economic Module, 2006, p. 155.

70

Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys (UNHS) 2005/06 - Report on the Socio-Economic Module, 2006, p. 132.

71 Uganda Bureau of Statistics (UBOS), Ugandan National Household Survey (UNHS) 2009/10, 2011, p. 136.

72 Uganda Bureau of Statistics (UBOS), Uganda Demographic and Health Surveys (UDHS) 2011 Full Report, 2012, p27.

73 74 75

Helen Nviiri, Pamela Kakande, Uganda Bureau of Statistics (UBOS), interviewed by Nadège Riche, 2013.

Ronald Luyima, National Union of Disabled Persons in Uganda (NUDIPU), interviewed by Nadège Riche, 2013.

Ugandan Society for Disabled Children (USDC), Annual Review April 2011 – March 2012, 2012.

34

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda exploited. Analysing the primary data collected in the framework of this OVC Mapping Exercise 2012 may provide with a better understanding of the situation of CwDs living in these 32 “new” Districts. It would for example be useful to have the percentage of CwDs in the district child population rather than numbers.

Table 7: CwDs per Gender and per the Thirsty-Two “New” Districts, in number (Uganda, 2012) District

Female

Male

Total

Agago

833

1,115

1,948

Alebtong

1,389

1,823

3,212

Amudat

288

371

659

Buikwe

665

887

1,552

Bukomansimbi

410

434

844

Buhweju

374

563

937

Bulambuli

660

880

1,540

Butamabala

353

459

812

Buvuma

207

264

471

Buyende

1,028

1,456

2,484

Gomba

282

349

631

Kalungu

564

458

1,022

Kibuuku

1,417

1,904

3,321

Kiryandongo

537

889

1,426

Kole

437

571

1,008

Kween

282

404

686

Kyankwanzi

168

231

399

Kyegegwa

439

620

1,059

Lamwo

611

799

1,410

Luuka

686

873

1,559

Lwengo

1,080

1,399

2,479

Mitooma

609

911

1,520

Namayingo

240

361

601

Napak

758

872

1,630

Ngora

218

290

508

Ntoroko

263

338

601

Nwoya

655

760

1,415

Otuke

199

292

491

Rubirizi

410

556

966

Serere

847

1,326

2,173

Sheema

285

425

710

35

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Zombo

851

1 186

2 037

Total

18 045

24 066

42 111

Source: MoGLSD, Consolidated Report on the OVC Mapping Exercise 2012, 2012 The ACPF Children with Disabilities in Uganda – An Hidden Reality Study provides a breakdown by types of disabilities: Figure 1: CwDs in Uganda per Types of Impairments, in Percentage (%) (Uganda, 2011) Multiple excluding albinism; 6,30% Intellectual; 21,90% Physical; 25% Hearing; 23,10% Visual; 23,50%

Source: African Child Policy Forum (ACPF), Children with Disabilities in Uganda: The Hidden Reality, Addis Ababa: The African Child Policy Forum, 2011, p.22.

As with the disability prevalence among the Ugandan population, the child disability rate varies over time and is dependent on different sources. This is again largely due to the use of different methodologies and improvements in data collection.

Comparing the various disability rates of the UBOS census and studies and the estimations of other stakeholders, the number of CwDs living in Ugandan is estimated between 1.22 to 3.8 million, with between 7 to 13% of children having a disability. Balancing the available data and taking into account what is known in the international context, it can be estimated that the disability prevalence among CwDs is about 12%, i.e. about 2.5 million children live with some form of disability in Uganda. The child disability prevalence varies across the country: the Northern region has the highest rate while the Eastern and Central regions have the lowest rates.

3. Disability and Education The statistical information available worldwide and in Uganda indicate an extremely low enrolment and completion of primary and secondary schools by CwDs. As with the data relating to child disability prevalence, the figures and estimations vary according to the different sources of information, definition of disability used and the assessment tools used.

36

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

3.1.

Worldwide Statistics

UNESCO states that 98% of CwDs in low- and middle-income countries are not enrolled in school76 and that 99% of girls with disabilities are illiterate 77. On the contrary, the WHO and World Bank estimate that the primary school completion for PwDs in low income countries is 45.6% for boys and 32.9% for girls, compared to 55.6% and 42% respectively for male and female without disabilities. Similarly, the mean years of education are of 5.63 years for boys with disabilities and 4.17 for girls with disabilities, compared to 6.43 and 578 respectively for male and female.

The WHO and World Bank also report that the school enrolment rates vary across the impairment spectrum: “children with physical impairments generally fare better than those with intellectual and sensory impairments.”79 These large variations cannot be explained in the framework of this Intermediary Report – Summary and Analysis of Statistics. It can however be concluded that CwDs are significantly less likely to attend and complete primary (and secondary) school compared to their peers without disabilities.

3.2.

Ugandan Statistics

Similar estimations and conclusion apply to Uganda.

3.2.1.

Enrolment Rates of Children with Disabilitiess in Pre-Primary, Primary and Secondary School Statistical information relating to the enrolment in pre-primary, primary and secondary schools is available for pupils and students with disabilities.

The Census 2002 counted that 19% of CwDs aged seven to sixteen have never been to school (compared to 10% of children without disabilities on average) and 39% of those aged seventeen to twenty-two had completed fewer than four years of education (compared to 26% of those without disabilities on average). 80 UBOS included questions relating to school enrolment and completion by PwDs in the UNHS 2005/06. It reports that 80% of PwDs attended primary school (81% of people without disabilities). 65% of the PwDs aged thirteen years and above and out of school had not completed primary level (compared to 53% of the people without disabilities). 13% of PwDs

76

United Nations Educational, Scientific and Cultural Organisation (UNESCO), Policy Brief on Early Childhood, Inclusion of Children with Disabilities: The Early Childhood Imperative, N° 46, April-June 2009.

77 United Nations Educational, Scientific and Cultural Organisation (UNESCO), From Exclusion to Equality: Realizing the rights of persons with disabilities – Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and its Optional Protocol, United Nations, Geneva, 2007.

78 World Health Organisation (WHO), World Bank, World Report on Disability, Geneva: WHO/World Bank, 2011, p. 207.

79

World Health Organisation (WHO), World Bank, Summary World Report on Disability, Geneva: WHO/World Bank, 2011, p. 8.

80 United Nations Educational, Scientific and Cultural Organisation (UNESCO), Education For All Global Monitoring 2010 Report Reaching the marginalized, 2010, p.184.

37

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda explained that they had no problem to attend school. However, 41% said they were limited all the time and in particular this is true for 60% of the visually-impaired people. Persons who have difficulties in self-care were less likely to attend school. 66.6% of persons with mental health conditions aged from six to twenty-four had their school attendance either fully or partially affected by their disability.81 Similar rates have been found as part of the UNHS 2009/10.

In addition to the UBOS census and surveys, the MoES included questions relating to disability in its annual survey counting the number of pupils and students enrolled in preprimary, primary and secondary schools since 2007. Despite the strong limitations of these Annual Surveys, this is the best source of available data relating to school enrolment of CwDs living in Uganda and it is therefore presented here.

In 2008, the registered number of CwDs in primary and secondary school was of respectively 183,537 and 11,415 CwDs.82 According to the surveys conducted by the MoES, the number of CwDs in pre-primary, primary and secondary school is low: - In 2009, 4,620, 204,352 and 13,418 CwDs were enrolled respectively in pre-primary, primary and secondary school (Figure 2 and Table 3).

- In 2010, 12,465, 205,018 and 12,993 CwDs were enrolled respectively in pre-primary, primary and secondary school (Figure 2 and Table 3).

- In 2011, 4,347, 197,200 and 3,075 CwDs were enrolled respectively in pre-primary, primary and secondary school (Figure 2 and Table 3).

This statistical information suggests that about 9% of the 2.5 million CwDs living in Uganda were enrolled in either pre-primary, primary or secondary schools over the 2009-11 period.

This is a strikingly different from the figures produced by the UNHS 2005/06 and must be due to the use of different methodologies.

The 2010 enrolment rate in pre-primary school is presented in the Figure 2 and Table 3.

However these figures cannot be compared to those of 2009 and 2011 as, in 2010, in addition to the CwDs in nursery, community and home based centres, enrolment in day care centres was also considered, which was not been the case in 2009 and 2011. This explains the higher enrolment rate in pre-primary schools in 2010.

Figure 2: CwDs in pre-primary, primary and secondary school per year, in number (Uganda, 2009, 2010 and 2011)

81

Uganda Bureau of Statistics (UBOS), Ugandan National Household Surveys 2005/06 - Report on the SocioEconomic Module, 2006, p. 130-35.

82 Government of Uganda, United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), Uganda’s Initial Status Report 2010, 2011, p. 35.

38

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

CwDs in pre-primary, primary and secondary school per year, in number 250 000 200 000 150 000 Female

100 000

Male

50 000 -

Total 2009

2010

2011

Female

105 601

109 009

110 304

Male

116 789

121 992

100 318

Total

222 390

231 001

210 622

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Table 8: Overall school enrolment of CwDs per school level and per year, in number (Uganda, 2009, 2010 and 2011) PrePrimary

Primary

Secondary

Total

Total of Percentage (%) children enrolled in preprimary, primary and secondary

2009

4,620

204,352

13,418

222,390

9,649,236

2.3

2010

12,465

205,018

12,993

230,476

10,006,324

2.3

2011

4,347

197,200

9,075

210,622

3,387,003

2.2

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

It is also significant to note that overall, the gender parity gap was closed at 50% for both boys and girls with disabilities. The enrolment rate for male and female CwDs is similar over time (2009, 2010 and 2011) and over education levels (pre-primary, primary or secondary schools). This means that there is an equivalent number of boys and girls with disabilities attending school.

Figure 3: CwDs in pre-primary school per gender, in number (Uganda, 2009, 2010 and 2011)

39

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

CwDs in pre-primary school per gender, in number 14 000 12 000 10 000 8 000 6 000

Female

4 000

Male

2 000

Total

-

2009

2010

2011

Female

2 308

5 784

1 865

Male

2 312

7 206

2 482

Total

4 620

12 990

4 347

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Figure 4: CwDs in primary school per gender, in number (Uganda, 2009, 2010 and 2011)

CwDs in primary school per gender, in number 250 000 200 000 150 000

Female

100 000

Male

50 000 -

Total 2009

2010

2011

Female

96 368

96 772

103 971

Male

107 984

108 246

93 229

Total

204 352

205 018

197 200

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Figure 5: CwDs in secondary school per gender, in number (Uganda, 2009, 2010 and 2011)

40

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

CwDs in secondary school per gender, in number 16 000 14 000 12 000 10 000 8 000 6 000 4 000 2 000 -

Female Male

2009

2010

2011

Female

6 925

6 453

4 468

Male

6 493

6 540

4 607

Total

13 418

12 993

9 075

Total

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

3.2.2.

Drop-Out Estimations

During the period 2009-2011, about 201,190 pupils with disabilities were in primary school and about 11,829 went on to secondary school on average. This suggests that about 94% of CwDs drop out of school between the primary and secondary levels. Approximately 6% complete primary school and continue studying in secondary school. This dropout rate of CwDs is much higher than the 25 to 50% average one. In other words, only 6% of CwDs complete primary school, whereas 50 to 75% of children without disabilities pass the primary school level.

This partly corroborates USDC estimations. USDC reports that between 5 to 10% of CwDs complete primary school level. Out of the 5 to 10% of CwDs completing primary school, only 25% access secondary school. This is due to, among other reasons, poor teaching or the inaccessibility of buildings and toilets 83.

USDC estimates that one third of all children out of school in Uganda are CwDs. They constitute the largest minority group dropping out and not completing primary school, although it is estimated that 60% of all CwDs could attend school with no special adaptations and 85% could benefit from education with minor adaptations 84.

The MoES has no data on the drop-out rate or on the numbers of CwDs out of school 85.

3.2.3.

Disaggregation by Impairments

Between 2009-2011, the largest percentage of CwDs in pre-primary school had hearing disabilities followed by children with mental health conditions, children with visual

83 84 85

Dolorence Naswa Were, Uganda Society for Disabled Children (USDC), interviewed by Nadège Riche, 2013.

Uganda Society for Disabled Children (USDC), USDC Advocacy Strategy 2013-16, 2012, p.2.

Christopher Wimon Okecho, Ministry of Education and Health (MoES), Interviewed by Nadège Riche, 2013.

41

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda disabilities, children with physical disabilities and then children with autism. The lowest percentage was children with multiple disabilities (Figures 6).

In 2009 and 2010, the highest percentage of the pupils with disabilities in primary school had hearing disabilities. Other CwDs include pupils with visual disabilities, pupils with mental health conditions, pupils with physical disabilities, pupils with autism and then pupils with multiple disabilities (Figure 7).

In 2010, the highest percentage of students with disabilities in secondary school had visual disabilities, followed by students with physical disabilities, students with hearing disabilities, students with mental health conditions, students who have multiple disabilities and then students who have autism (Figure 8).

Overall, children with sensory disabilities (e.g. visually- and hearing-impaired children) have the highest chance to access schools and complete primary level, whereas children with mental and cognitive disabilities (e.g. autism) and children with multiple disabilities are less likely to attend school.

Figure 6: CwDS in pre-primary school per impairments, in percentage (Uganda, 2009, 2010 and 2011)

CwDs in pre-primary school per impairments, in percentage 30% 25% 20% 15% 10% 5% 0%

2009 Multiple Mental "handica Physical p"

2010

Autism

Hearing

Visual

2009

8%

26%

22%

10%

19%

15%

2010

16%

27%

28%

4%

14%

12%

2011

4%

27%

27%

5%

15%

22%

2011

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Figure 7: CwDs in primary school per impairments, in percentage (Uganda, 2009 and 2010)

42

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

CwDs in primary school per impairments, in percentage 35,00% 30,00% 25,00% 20,00% 15,00% 10,00% 5,00% 0,00%

2009 2010 Multiple "handic Physical ap"

Autism

Hearing

Mental

Visual

2009

4,10%

29,30%

21,90%

2,60%

16,40%

25,80%

2010

4,10%

28,80%

23,70%

2,70%

16,30%

24,30%

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009 and 2010.

Figure 8: CwDs in secondary school per impairments, in percentage (Uganda, 2010)

CwDs in secondary school per impairments, in percentage 60,0% 50,0% 40,0% 30,0% 20,0%

2010

10,0% 0,0%

2010

Autism

Hearing

2,1%

16,4%

Multiple Mental "handica Physical p"

Visual

11,6%

48,3%

0,9%

20,7%

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2010.

3.2.4.

Geographical Coverage

A regional analysis indicates that the highest proportion of CwDs in pre-primary school over the period 2009-11 are from the Northern region (24%), followed by the East (21%), Central (20%), West (19%), South-West (12%) and North-East (5%) regions (Figure 10).

43

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Pupils in primary school from 2009 to 2011 primarily come from the East region (27%), followed by the North (27%), Central (18%), West (13%), South-West (9%) and North-East (1%) (Figure 11).

Over the same period, the highest proportion of students with disabilities in secondary schools is from the Central region (37%) while the lowest proportion is from the North-East (1%). In-between, it decreasingly ranges from 27% in the East, 16% in the North, 10% in the South-West and 5% in the West regions (Figure 12).

These figures do not take into account or assess the widespread evidence that there are more CwDs in the Northern regions of Uganda. Whereas higher rates are seen in the Northern region, the lowest rate is in the North-East region that has also been affected by the war. It can also be argued that the variations in percentages of CwDs attending schools across the regions are due to the irregular geographic coverage of special schools or schools with an annex for CwDs. CwDs in schools often come from other distant Districts 86.

Figure 9: CwDs in pre-primary school per district, in percentage (Uganda, 2009, 2010 and 2011)

CwDs in pre-primary school per district, in percentage 45% 40% 35% 30% 25% 20% 15% 10% 5% 0%

2009 2010 2011 Central

East

North East

North

South West

West

2009

12%

13%

1%

40%

21%

13%

2010

24%

25%

6%

11%

9%

26%

2011

24%

26%

7%

20%

6%

17%

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Figure 10: CwDs in primary school per district, in percentage (Uganda, 2009, 2010 and 2011)

86

Welsey Apio, Alfred Ojok, Jimmy Opiyo and Salomon Opiyo, four CwDs attending Gulu Primary School, interviewed by Nadège Riche, 2013.

44

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

CwDs in primary school per district, in percentage 120% 100% 80% 60% 40%

2009

20%

2010

0% Central

East

North East

North

South West

West

Nation al

2009

17%

30%

1%

28%

12%

11%

100%

2010

19%

31%

1%

27%

8%

15%

100%

2011

18%

33%

1%

27%

7%

14%

100%

2011

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

Figure 11: CwDs in secondary school per district, in percentage (Uganda, 2009, 2010 and 2011)

CwDs in secondary school per district, in percentage 45% 40% 35% 30% 25% 20% 15% 10% 5% 0%

2009 2010 2011 Central

East

North East

North

South West

West

2009

40%

25%

1%

16%

7%

12%

2010

38%

26%

1%

14%

11%

10%

2011

32%

30%

2%

17%

13%

6%

Source: Ministry of Education and Sports (MoES), Uganda Education Statistical Abstract 2009, 2010 and 2011.

3.2.5.

School Attendance and Household Wealth Status

UNESCO has researched the impact that levels of wealth or household poverty have on school attendance of CwDs. From the figures presented in Table 4 below, it is clear that 45

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda CwDs living in Uganda have a lower enrolment rate compared to the average of children: 19% of CwDs aged seven to sixteen years have never been to school, compared to 10% of children on average. The rate even increases to 28% of CwDs who have never been to school and who live in the 20% poorest households. Unsurprisingly, the poorer a household is, the less chance there is of CwDs to attend school.

Table 9: Education Indicators per Disability Status of Head of Household and Wealth, in Percentage (%) (Uganda, 2002) 7- to 16year-olds who have never been to school

7- to 16year-olds who have never been to school

7- to 16year-olds who have never been to school

17- to 22year-olds with fewer than 4 years of education

Average

Disabled

Disabled* from poorest 20%

Average

28

6

3

21

17- to 22year-olds with fewer than 4 years of education

17- to 22year-olds with fewer than 4 years of education

Disabled

Disabled* from poorest 20%

30

44

* ‘Disabled’ refers to self-reported disability status of the household head.

Source: United-Nations Educational, Scientific and Cultural Organisation (UNESCO), Education for All (EFA) Global Monitoring 2010 - Report Reaching the Marginalized, 2010, p. 184.

3.2.6.

Conclusions on Education and Disability

To conclude, there are problems with the reliability of the statistical information about CwDs in pre-primary, primary and secondary schools and therefore it is only possible to partly assess the situation of CwDs in education. Very few CwDs complete a primary level of education and even fewer attend and complete secondary school. Boys and girls with disabilities have similar enrolment rates across all educational level. With regards to CwDs, Uganda is therefore far from attaining the Millennium Development Goal number two which aims to achieve primary education for all.

In addition the data mostly refers to children with visual or hearing impairments 87. Children with intellectual disabilities, multiple disabilities or psychosocial disabilities are less likely to attend school.

UNICEF identified that, in Africa, only 5% of CwDs attend Inclusive Education (IE) schools and 10% go to Special Needs Education (SNE) Schools (i.e. special schools or a school with an annex for CwDs)88. In Uganda, no data has been made available to show whether the identified children are being educated in special schools, annexes and units or within mainstream schools. However, clearly the percentage of CwDs enrolled in school remains low compared to the estimated numbers of PwDs in the population as a whole.

87

Ronald Luyima, National Union of Disabled Persons in Uganda (NUDIPU), interviewed by Nadège Riche, 2013.

88

United Nations Children’s Fund (UNICEF), Fast Facts - Day of the African Child: Uganda, 2012, p. 1.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

3.2.7.

School Environment

The inaccessible school environment (i.e. access to classrooms and latrines) plays a significant role in the drop-out of CwDs89. UNESCO reports that 50% of the schools “in developing countries do not provide healthy learning environments with water and sanitation facilities that are accessible for CwDs”90.

4. Disability and Various Fields relating to the Everyday Life of Children with Disabilities Aside from the child disability prevalence and access to primary and secondary education, sources of statistical information relating to CwDs worldwide and in Uganda are scarce. This section presents an overview of the situation in other fields relating to the everyday life of CwDs by presenting the available data.

4.1.

Causes of Disability

The ACPF is the only organisation that has studied the causes and onsets of disability in Africa and Uganda. “The major causes of disability in Africa are communicable diseases, war, accidents, and inadequate prenatal and neonatal health care services”. Among children in Africa, the leading cause of disability is illness acquired before the age of five years, accounting for one third to half of the cases. The majority of these disabilities are preventable.”91 In Uganda, the major onset of disability among children is illness as evidenced in the UBOS Census 2002 and ACPF Report 2011. The second cause of disability is congenital or acquired around birth. The remaining reasons, which are given, are accidents and curse from God (or similar). This suggests that people have acquired a better awareness of disability and its causes and that only a minority of people today attribute disability to a curse or a malediction. Although this is true that few Ugandan people still believe that a curse or God is the cause of disability, this is not considered as the main reason of disability any more.

4.2.

Disability and Birth Registration

Although the understanding of the causes of disability has improved, CwDs are still referred to as “invisible” children. They are often kept at home, hidden from society by their families and most of them are not registered at birth or death. The ACPF Study Children with Disabilities in Uganda – the Hidden Reality 2011, however, estimates that the situation appears to be improving. Almost half of the 540 CwDs (44%), who were involved in the

89

Dolorence Naswa Were, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

90

United Nations Educational, Scientific and Cultural Organisation (UNESCO), Education for All (EFA) Global Monitoring 2010 - Report Reaching the Marginalized, 2010.

91 African Child Policy Forum (ACPF), Children with Disabilities in Africa: Challenges and opportunities, Addis Ababa: The African Child Policy forum, 2011, p. XXXV.

47

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Study, are registered. Another 33% are not registered while 14% have an unknown status and 9% did not answer the question (Figure 13).

Figure 12: Birth Registration of CwDs, in percentage (%) (Uganda, 2011) Not answered; 9%

Unknown status; 14% Registered; 44% Not registered; 33%

Source: African Child Policy Forum (ACPF), CwDs in Uganda: The Hidden Reality, Addis Ababa: The African Child Policy Forum, 2011, p. 24.

4.3.

Enjoyment of Human Rights

Globally, the CRC Committee estimated in 2007 that CwDs are “five times more likely to be victims of abuse”. This includes mental and physical violence and sexual abuse 92.

In Uganda, USDC and the NCC issued a report assessing the abuse, protection and promotion of rights of CwDs in Uganda in 2011 corroborating the CRC Committee estimations. The Study is based on fact findings in the four districts of Iganga, Jinja, Kampala and Masaka.

USDC considers that 90% of CwDs do not access or enjoy their rights to survival, development, protection and participation. Although most parents and local decisionmakers are aware of the needs and challenges faced by CwDs, socio-cultural beliefs and attitudes prevent the realisation of the human rights of CwDs. It means that “many communities perceive impairment or disability as something beyond their comprehension.

Unless disability is as a result of accident, knowledge seems to be overshadowed by mystery once sickness reaches the level of impairment and is considered as bad omen and curse.” 93 Disability remains difficult to be understood and accepted by the families and communities

92

Convention on the Rights of Child (CRC) Committee, General Comments No. 9 - The Rights of Children with Disabilities (CRC/C/GC/9), 27 February 2007, p. 12-13.

93 Network on Disabled Children, Uganda Society for Disabled Children (USDC), National Council for Children, The State of Abuse, Protection and Promotion of the Rights of Children with Disabilities in Uganda, 2011, p. 14.

48

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda and this is the primary reason why CwDs cannot access care, protection, health or education.

94

4.4.

Disability and Poverty

People living in low- and middle-income countries are significantly more likely to have or incur a disability within their lifetime. This is relatively well evidenced in Uganda, although the available data is ten years old. In 2003, a Study reported that about 80% of PwDs live in conditions of long-term poverty. “If this figure is taken as an indicator of poverty level among PwDs then, according to the current population estimate, there are about one million poor PwDs. In other words, out of every ten Ugandans living in abject poverty one is a person [with disabilities].”95 In 2004, NUDIPU conducted a Survey on the situation of PwDs in Northern Uganda96 and established a high correlation between poverty and disability - 72% of PwDs live in a chronic state of poverty in the Northern region of Uganda. However, this survey took a qualitative approach and did not produce any reliable quantitative data and focused on the Northern Region only 97.

4.5.

Disability and Humanitarian Crisis

Statistical information relating to CwDs facing humanitarian emergencies and crisis are extremely rare. No data is available for Uganda. The Atlas Alliance and CBM consider that, “for every child killed in conflict, three are injured and permanently [have acquired disabilities]”.98

4.6.

Disability and (re)habilitation

Access to health and (re)habilitation is the first practical step to enable CwDs to move around, go to school and participate in social life 99. USDC considers that only 10% of CwDs living in Uganda actually benefit from (re)habilitation services100. Based on their representative sample, ACPF presents a slightly better picture of the situation. Most carers of CwDs reported that they have access to health care services and around 20% of CwDs have access to (re)habilitation services. The vast majority of these services are provided by the Government followed by NGOs. One third of CwDs report that they would like to use health services but cannot for various reasons: the services are too expensive or too far from

94

Network on Disabled Children, Uganda Society for Disabled Children (USDC), National Council for Children, The State of Abuse, Protection and Promotion of the Rights of Children with Disabilities in Uganda, 2011.

95 Development Research and Training (DRT), Study on Chronic Poverty, 2003.

96 National Union of Disabled Persons of Uganda (NUDIPU), Northern Uganda Survey 2004, 2004.

97

Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm - Evaluation of Norwegian support to promote the rights of persons with disabilities - Uganda country report, February 2012, p. 9.

98

Atlas Alliance, CBM, Factsheet: Disability in Conflicts and Emergencies, 2011.

Caroline Adong, National Council for Disability, interviewed by Nadège Riche, 2013.

100 Network on Disabled Children, Uganda Society for Disabled Children (USDC), The State of Abuse, Protection and Promotion of the Rights of Children with Disabilities in Uganda, 2011.

99

49

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda home or parents, families or carers do not see the value of bringing the CwDs to a health care or (re)habilitation centre.

Figure 13: Health Care Service Providers Used by CwDs, in number (Uganda, 2011) 120

100 80 60

Government

40

NGOs

20

Private

0

Individuals Others

Source: African Child Policy Forum (ACPF), CwDs in Uganda: The Hidden Reality, Addis Ababa: The African Child Policy Forum, 2011, p. 49.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 4: Presentation and Analysis of the Institutional and Regulatory Frameworks CRPD Article 4 (1) requires State Parties to take into consideration and implement the rights of PwDs, enshrined in this Convention, by all means at their disposal. This includes the adoption, amendment and review of legislation (Article 4 (1) (a) and (1) (b)) as well as “the protection and promotion of the human rights of PwDs in all policies and programmes” (Article 4 (1) (c)).

An analysis of the institutional and regulatory frameworks is therefore an essential exercise. In this way, it is possible to identify and assess how the laws and policies support and protect the human rights of CwDs living in Uganda and the types of initiative that the national and local Government Institutions have taken to address their rights and needs. The role, powers and structure of the Ugandan Government Ministries and Bodies, whose initiatives directly impact on the realisation of the rights of CwDs, are discussed. The decentralisation of government in Uganda through the role of Districts and its impact in relation to CwDs is also considered and the example of the Gulu District is provided. While the influence of international laws is explained, the main focus is on Ugandan legislation and policies as they have a direct effect on the living situation of CwDs in Uganda. Each piece of legislation and the policies relating to disability, children, education and health and directly targeting CwDs are presented and analysed in depth (Annexe 2).

1. The Institutional Framework: the Role of National and Local Government Institutions This section outlines the role, powers and mandate of various government ministries, national councils and commissions as well as local government institutions in promoting and protecting the rights of CwDs living in Uganda. The ministries, councils and commissions include the MoGLSD, MoES, MoH, the Ministry of Finance, Planning and Economic Development (MoFPED), the NCD, the National Coucil for Children (NCC), the Uganda Human Rights Commission (UHRC), the EOC and the Local Government Institutions at district, sub-county, parish and village level.

1.1.

National Government Institutions

1.1.1.

The Ministry of Gender, Labour and Social Development The MoGLSD aims to provide better standard of living, equity and social cohesion and specifically targets the most disadvantaged parts of the Ugandan population. It is the lead Ministry for disability issues. The Ministry is responsible for the protection and promotion of the human rights and for improving the welfare of “vulnerable” populations through the initiation and implementation of legislation, policies and programmes relating to their

51

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda empowerment and their social, economic and cultural development. The Ministry also supervises the work of all stakeholders working in the social development and human rights sector. The Ministry has a Department of Children and Youth Affairs which is responsible for children and youth empowerment programmes as well as a Department of Elderly and Disability Affairs responsible for older people and PwDs development programmes.

The Disability and Elderly Department of the MoGLSD runs several programmes which indirectly cover and impact on CwDs.

1.1.1.1. The Community-Based Rehabilitation Programme101 WHO defines Community-Based Rehabilitation (CBR) as follows: “CBR focuses on enhancing the quality of life for PwDs and their families, meeting basic needs and ensuring inclusion and participation. CBR was initiated in the mid-1980s but has evolved to become a multisectoral strategy that empowers PwDs to access and benefit from education, employment, health and social services. CBR is implemented through the combined efforts of PwDs [themselves], their families, organisations and communities, relevant government and nongovernment health, education, vocational, social and other services.” 102 CBR is the main programme targeting PwDs in Uganda and was introduced in 1992 with the support of the Norwegian Association of Disabled (NAD). The first phase of the implementation of the CBR programme in Uganda consisted of a successful pilot project in the three Districts of Iganga, Mukono and Tororo. This was rapidly expanded to the seven other Districts of Busenyi, Kabale, Kamuli, Mbale, Mbarara, Mtungama and Mutero. The programme had a comprehensive approach and the activities covered the various areas of the everyday life of PwDs. This consisted of awareness raising events to challenge the negative attitudes of the communities towards PwDs, nutrition and health assessment, provision of counselling services and of assistive devices, design of projects to access education and vocational trainings as well as livelihood activities.

In 2000, the MoGLSD established the national CBR Steering Committee to monitor and evaluate the implementation of the CBR programme countrywide. Two major concerns were identified. Despite the running of the programme over eight years, a lack of participation of PwDs was identified in all Districts and the Tororo District concentrated all types of problems encountered in the running of the CRB programme in Uganda.

In 2008/09, NAD withdrew and the CBR programme is now funded by the MoFPED and run by the MoGLSD in the twenty-four Districts of Arua, Budaka, Buhweju, Buikwe, Butaleja, Busia, Hoima, Kaliro, Kanungu, Kasese, Kayunga, Kyegegwa, Masaka, Mitooma, Nakasongola, Paliisa, Rubiziri, Sheema, Tororo and Wakiso. However, the MoGLSD lacks technical and financial support to expand the CBR programme outside of the twenty-four Districts where it is currently operational.

101

Katende Phoebe, Chapter 12: The Process of Community-Based Rehabilitation and its Unfolding Evolution in Uganda, In Katende Phoebe, Hon. Ndezi Alex, Batesaki Barbara, Mwesigye James, Dr. Nganwa Alice, A Handbook on Disability experiences and approaches in Uganda, 2010. This article presents a detailed history of the CBR programmes implemented in Uganda.

102 World Health Organisation (WHO), Community-Based Rehabilitation (CBR), http://www.who.int/disabilities/cbr/en/, (Accessed on 3 February 2014).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda A core element of the CBR programme is to address the needs and rights of CwDs. The specific activities targeting CwDs consist of identifying CwDs and assessing their needs with appropriate referral to health services, including nutrition and counselling, and (re)habilitation, education and vocational training and raising awareness of parents, guardians and caretakers to challenge their misconceptions about disability. 103 In this respect, the MoGLSD and USDC work in partnership and run several activities together. These are implemented in eight Districts: Adjumani, Apac, Arua, Hoima, Lira, Luwero, Masaka and Masindi. In Apac, Luwero and Masindi, parents of CwDs have formed groups registered under the MoGLSD and run the centres. These Parent Support Groups (PSGs) support the set-up of (re)habilitation centres for CwDs in the Referral Hospitals in these eight Districts with support of the Ministry. These centres consist of a physiotherapy unit, an orthopaedic workshop and a hostel to stay before/after the surgery.

In parallel, USDC has an office in the Districts of Adjumani, Arua, Hoima, Lira and Masaka.

They supervise and lobby the District and/or MoGLSD to establish partnerships whereby the government gives a plot for free while USDC builds a (re)habilitation centre, with donors’ support, which then belongs to the government. Both government and USDC pay staff. The centres also serve as workshops to build assistive technologies, for which the government has provided material (e.g. metal, leather) for free. USDC also organises many outreach clinics and the sensitisation of parents and children can be better achieved when it is delivered closer to where families live.1

1.1.1.2. The Mine Victim Assistance Programme104 In place since 2009/10, this programme targets land mine survivors, many of whom are children who have acquired a disability. The MoGLSD and MoH assess their situation and support both medical and psychosocial treatment and (re)habilitation as well as livelihoods.

Both Ministries also partner with other organisations: UNDP has provided assistive technologies and mobility devices in several districts, and Plan supports Tororo local government in the care of CwDs under this Programme. Additionally, because Gulu Referral Hospital is unable to take care of the numerous people needing medical treatment, people are also sent to the orthopaedic workshops in Bulouba and Kumi Hospitals.

1.1.1.3. The Special Grants for PwDs105 This countrywide and decentralised programme aims to support Income Generating Activities for PwDs. At present, non-disabled parents of CwDs cannot benefit from it but the MoGLSD has put a proposal forward to address this with the support of the District Local Governments (which allocate the Grants).

103

Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

104

Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

105 Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

1.1.1.4. The Social Protection Programme106 This has two components. The Senior Citizens Grants is a pilot project in fourteen Districts and benefits Ugandans who are sixty years and over. Because many CwDs stay with their grandparents, they indirectly benefit from this Grant. The Vulnerable Family Grants target those with low labour capacity and a high dependency on others because they cannot work.

Again some of these families include CwDs.

1.1.1.5. Other programmes107 The MoGLSD working through its Social Development Strategic Planning group promotes the adoption of a Social Protection Framework covering vulnerable populations which will impact on CwDs living in Uganda.

1.1.2.

The Ministry of Health

The MoH is in charge of policy formulation and implementation in the health sector and the coordination of the provision of health services in Uganda. The MoH has three Departments that that are able to conduct activities targeting CwDs: - The Disability and Rehabilitation Department: This consists of a Head of Unit, three Senior Officers, some “volunteers” and support staff such as a secretary.

- The Mental Health Department.

- The Child Health Department.

The Disability and Rehabilitation Unit has six programmes which target PwDs of all ages: - The Assistive Devices Programme: the MoH provides PwDs and CwDs with wheelchairs, the most expensive assistive device. One hundred are given out each year by the Leonard Cheshire Centres. The MoH also gives adapted wheelchairs to Cerebral Palsy (CP) children.

- The Visually-Impaired and Blindness Programme - The Hearing and Deafness Programme - The Physically-Impaired Programme - The Injury Prevention and Control Programme - The Older People Programme The MoH works through the Hospitals. By law, each Regional Hospital should have a physiotherapy department with three physiotherapists and an occupational therapy department with one occupational therapist. Each District Hospital should have one practicing physiotherapist. Six orthopaedic workshops are based in the regional centres of

106

Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

107 Kaggya Nabulime, Beatrice, Ministry of Gender, Labour and Social Development (MoGLSD), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Arua, Gulu, Fort Portal, Mbale, Mbarara and Mulago. Mulago is considered to be the national centre and people are referred there from all over Uganda. These workshops built assistive devices locally and distribute them to PwDs and CwDs.108

1.1.3.

The Ministry of Education and Sports

The MoES is responsible for education and sports policy formulation and implementation.

The Ministry also coordinates and supervises the provision of education and sports services at all levels. The SN&IE Department is in charge of promoting education for CwDs. The MoES has no specific and ongoing projects targeting CwDs, although the Universal Primary and Secondary Education Programmes benefit CwDs. Similarly, the School Facilities Grant (FSG), which is offered by the Uganda National Education Support Centre through its Poverty Action Fund Program, aim to improve primary school infrastructural facilities. Individual schools may apply for funding and the Grant must be used for constructing classrooms, latrines or teacher housing and for purchasing desks and is distributed through the local government. Under the NDP 2010/10 - 2014/15, it is specified that the FSG should be used to “expand and improve classrooms, teachers’ houses, pit latrines and other related facilities in order to improve hygiene, safety and security of children at school.”109 The FSG has therefore been used to provide accessibility of educational buildings and latrines to CwDs. It has, however, been discovered that in some schools, teachers lock the accessible latrines and keep them for their own use because they are nicely designed110.

The Ministry of Finance, Planning and Economic Development

1.1.4.

The MoFPED is responsible for releasing and budgeting finances to support the implementation of policies and programmes aimed at promoting equal opportunities for vulnerable populations including CwDs. The Ministry works in close collaboration with the line Ministries, national councils and commissions. The Ministry does not have a specific department relating to PwDs or CwDs.

1.1.5.

The Uganda Human Rights Commission

The UHRC is one of the constitutional bodies established to promote and protect human rights, including the rights of persons and children with disabilities. The UHCR monitors the implementation of Chapter Four of the Constitution of Uganda (Bill of Rights) and reports on the state of human rights to the Government and Parliament of Uganda. The UHRC also educates the public about their human rights. The UHCR has a Department for vulnerable

108

Bongole, Rose, Ministry of Health (MoH), Interviewed by Nadège Riche, 2014.

Government of Uganda, National Development Plan 2010/11 – 2014/15, 2010, p. 20.

110 Asamo, Helen Grace, National Union of Women with Disability in Uganda (NUWODU), Interviewed by Nadège Riche, 2014.

109

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda populations that processes all issues related to human rights violations of vulnerable populations including persons and children with disabilities.

1.1.6.

The Equal Opportunities Commission

The EOC is the constitutional body established by the EOC Act, 2007, to strengthen opportunities for all, including CwDs. The Commission ensures that there is equal access to opportunities for all through investigation, documentation, legal action and reporting to the Parliament of Uganda. There is a representative for PwDs who is also assumed to be the voice of CwDs. While the EOC focuses on the promotion of equal opportunities for all, the UHRC promotes and protects the human rights of all persons. Both Commissions have powers equivalent to powers of a Court in so far as this enables the Commissions to investigate or inquire into, on their own initiative or on a complaint, any grounds which seems to amount to or constitute discrimination, marginalisation or to otherwise undermine equal opportunities and human rights. However, the judgments of both Commissions do not have legal force as the judgment of a Court would have.

1.1.7.

The National Council for Disability

The NCD is a semi-autonomous government body established by the NCD Act, 2003, to monitor and audit all government and non-government legislation, policies and programmes at all levels. The Council aims to ensure that they include the perspective of PwDs and comply with the CRPD and 1995 Constitution of Uganda in relation to the protection and promotion of the rights of PwDs. The NCD is decentralised with District and Sub-county Councils for Disability which monitor programmes at their respective levels. The NCD also promotes the inclusion of PwDs and reports to the Parliament of Uganda on the situation of PwDs including CwDs annually. Finally, the NCD carries out research and documentation on issues relating to all categories of PwDs.

1.1.8.

The National Council for Children

The NCC is a semi-autonomous government body established by the NCC Act, 1996, to communicate the needs and challenges affecting children in Uganda to Government. “Its mandate is to provide a structure and mechanism which will ensure proper coordination, monitoring and evaluation of all policies and programmes relating to the Survival, Development, Protection and Participation of the Child and for other connected matters.” 111 Since 2012, the NCC has initiated work with CwDs and their representative organisations: - In 2011, the NCC and USDC have issued a report assessing the abuse, protection and promotion of rights of CwDs in Uganda. 112 - On the occasion of the International Day of the African Child 2012 dedicated to CwDs, the NCC gathered approximately 100 CwDs in a national conference that

111

National Council for Children (NCC), A brief about National Council for Children Advocacy Role, 2014, p. 1.

Network on Disabled Children, Uganda Society for Disabled Children (USDC), National Council for Children, The State of Abuse, Protection and Promotion of the Rights of Children with Disabilities in Uganda, 2011.

112

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

-

-

-

ultimately produced the CwDs Petition on the Accessibility to Rights that was presented to the Parliament of Uganda.

The NCC chairs a National Disability Forum that meets four times a year. The Forum gathers all government and non-government stakeholders working with CwDs living in Uganda and aims to define strategic planning and coordination of activities in view of protecting CwDs. The NCC organises regular radio and TV talk show with the purpose of raising awareness about children issues. Several of these talk shows focused on the rights of CwDs. The NCC mainstreams the perspective of CwDs in several types of its activities: the specific rights of CwDs have been discussed during the Partners’ Fora that are organised on a regular basis (i.e. the Stop Child Labour National Partners Forum, the Children and HIV/AIDS National Forum, the Early Childhood National Forum) and CwDs have been visited during field trips assessing the situation of children in Uganda113.

1.2.

The Parliament of Uganda

“The Parliament of Uganda derives its mandate and functions from the 1995 Constitution, the laws of Uganda and its own Rules of Procedure. The Constitution contains articles which provide for the establishment, composition and functions of the Parliament of Uganda and empowers Parliament "to make laws on any matter for the peace, order, development and good governance of Uganda", and "to protect the Constitution and promote democratic governance in Uganda".”114 Uganda has been the first country in the world to have reserved seats for elected disability representatives to the Parliament 115 and now has five Members of Parliament (MPs) representative of PwDs. In relation to children, the Parliament of Uganda has set up the Uganda Parliamentary Forum for Children (UPFC). This Forum advocates for child rights by including a children’s perspective in legislation and by budgeting for children. It monitors the implementation of government programmes. The perspective of CwDs is also mainstreamed in all activities of the Forum and one MP, Honorary Baba Diri, acts as the Champion or the watchdog advocating for the rights of CwDs’116.

1.3.

The Local Government Institutions

113

National Council for Children (NCC), A brief about National Council for Children Advocacy Role, 2014.

Parliament of Uganda, http://www.parliament.go.ug/new/index.php/about-parliament, 2014, (Accessed on 20 April 2014).

114

115

Jacobsen, Charlotte B., Giving all Children a Chance - A study of personhood, childhood and educational integration for children with mental disability in Uganda, 2010.

116 Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The role and powers of local government institutions in relation to their responsibilities for CwDs are mainly defined by the Local Government Act, 1997, the Children Act, 1996, and the Education Act, 2008.

The Districts play a very important role in ensuring that all children, including CwDs, access the appropriate education, health and other services that they are entitled to receive. The District Local Government headed by the Local Councillor (LC) 5 allocates resources and appoints the Secretary for Children Affairs to support the realisation of the rights of all children. The Community Development Officers implement all government programmes targeting children and other vulnerable populations. The Secretaries for Health and Education ensure that child related issues are integrated in education and health district programmes. The District Disability Councils monitor and audit District development programmes to ensure that they include persons and children with disabilities.

The LC 1 and LC 2 ensure that the community development programmes in their areas target all children including CwDs. The Secretary for Children Affairs and Secretary for Disability Affairs at village and parish level ensure that the issues of these vulnerable populations are addressed and integrated in community development programmes.

The Gulu District has been analysed to provide a detailed example of how the issues relating to CwDs are handled at local level.

Unlike other Ugandan districts that only have a CDO, Gulu District has two positions: a CDO and a DRO. There is no specific position for CwDs. 117 The role of Gulu District Council for Disability is to advocate for PwDs’ rights and to monitor their implementation in the District. The Council is composed of nine people: three of them are disabled, while the remainder are civil servants. The District Rehabilitation Officer (DRO) acts as Secretary for the Council. The Chairperson of the Council is nominated by GDPU and validated by Gulu District. The Council has very restricted means: no office, no facilitation and no budget to support it. The Council meets three times a year. 118 Since 2009/10, Gulu District has a special grant for PwDs of twenty six million Uganda Shillings per financial year. A maximum of two million Uganda Shillings is given to groups or organisations of at least ten PwDs to start up income generation activities (e.g. pig and goat roaring, farming activities and revolving loans schemes). At present, any group of PwDs can benefit from it. Gulu District does not consider either the leadership or the entrepreneurial skills within the group as a criterion for the allocation of these grants. There is an overwhelming demand.119 Overall, Gulu District has several activities targeting CwDs: - Gulu District is in charge of education and there are several schools with units supporting CwDs: the Laroo School for the Deaf, the Gulu Prison School for children with mental disabilities (called this because the prison is nearby) and the Gulu Primary School for blind and visually impaired children.

117 118 119

Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

Okwera, Albert, District Disability Council of Gulu, Interviewed by Nadège Riche, 2013.

Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Gulu District provides some CwDs with wheelchairs thanks to the support of the Association of Volunteers in International Service (AVSI). According to the law, Districts are responsible for providing assistive technologies and mobility devices (e.g. white canes, hearing devices) but are not delivering these to PwDs, probably due to lack of funding. In the area of health, Gulu District only identifies CwDs who need (re)habilitation and refers them to Gulu Referral Hospital. This public hospital has an orthopaedic workshop.

- Gulu District allocates the PwDs Grants through the office of the Chief Administrative Officer (CAO).

Immediately after the war, the Campaign to end Paediatric HIV/AIDs (CEPA) and several churches have been active in Gulu District donating wheelchairs, but they have phased out or stopped their activities targeting persons and children with disabilities. 120

2. The Regulatory Framework Relating to Children with Disabilities Living in Uganda The legal and policy provisions targeting CwDs living in Uganda comprise the international Conventions ratified by Uganda, i.e. the CRPD and the CRC, and the national legislation and policies.

2.1.

International Conventions and Instruments

2.1.1.

The United-Nations Convention on the Rights of the Child Uganda signed and ratified the CRC in 1990.

“The CRC acknowledges the rights of [children, including] CwDs and the primary role of parents and the family in the care and protection of children, as well as the obligation of the State to help them carry out these duties. The CRC consists of forty-one articles which promote and protect the rights of CwDs. These rights are grouped together under the following themes: - Survival rights (Articles 23, 24, 25 and 39) include the CwDs’ right to life and the needs that are most basic to existence, such as treatment, nutrition, shelter, an adequate living standard and access to medical services.

- Development rights (Articles 28 and 29) include the right to education, health, play, leisure, cultural activities, access to information, and freedom of thought, conscience and religion.

- Protection rights (Articles 2, 19, 22, 32 and 34) ensure that children are safeguarded against all forms of abuse, neglect and exploitation, including special care for refugee children; safeguards for children in the criminal justice system; protection for children in employment; protection and (re)habilitation for children who have suffered exploitation or abuse of any kind.

120

Okwera, Albert, District Disability Council of Gulu, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Participation rights encompass CwDs’ freedom to express opinions, to have a say in matters affecting their own lives, to join associations and to assemble peacefully. As their capacities develop, children should have increasing opportunity to participate in the activities of society, in preparation for adulthood.

The CRC includes four articles that are given special emphasis. These are also known as “general principles”. [These principles are the foundation upon which the Convention is based and consist of the following]: - All the rights guaranteed by the CRC must be available to all children without discrimination based on any grounds (Article 2).

- The best interests of the child must be a primary consideration in all actions concerning children (Article 3).

- Every child has the right to life, survival and development (Article 6).

- The child’s view must be considered and taken into account in all matters affecting him or her (Article 12).” 121

2.1.2.

The United-Nations Convention on the Rights of Persons with Disabilities In 2008, Uganda signed and ratified the CRPD and its Optional Protocol without any reservation.

“The CRPD addresses the specific measures needed to protect the rights of PwDs including CwDs. It does this in three ways: - In some instances, for example the best interests of the child, the CRPD simply reaffirms an existing right and emphasises that it must be respected for CwDs on an equal basis with all other children.

- With regard to some rights, such as protection from violence, access to education, access to justice, access to health, and collection of data and statistics, it outlines in more detail than the CRC what needs to be done by governments.

- Finally, there are some additional provisions covered by the CRPD, for example, respect for integrity, living independently, sport, personal mobility, and habilitation and (re)habilitation. These provisions do not constitute new human rights. Rather they introduce specific obligations on Governments to remove the barriers that currently impede the realisation of the rights of CwDs. The implementation of the CRPD is a co-operative process for the States of the world. Article 32 of the CRPD emphasises that international co-operation is vital if the provisions of the Convention are to be realised for all PwDs. When States ratify the Convention, they are not only committing to implementation in their own country, but also, where appropriate, to provision of support and cooperation with other States. In particular, it proposes that governments introduce measures which include international co-operation, including international development programmes, which are inclusive of and accessible to PwDs. It is important that CwDs are also explicitly acknowledged in these programmes. [This include]: - Facilitating and supporting capacity building through the exchange and sharing of information, experiences, training programmes and best practices is encouraged,

121

Children Rights Alliance Ireland, www.childrensrights.ie, (Accessed on 14 February 2014).

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Facilitating co-operation in research and access to scientific and technical knowledge and - Providing technical and economic assistance, including by facilitating access to and sharing of accessible assistive technologies and through the transfer of technologies.

However, the commitment to international co-operation does not undermine the responsibility of individual States to fulfil their obligations within their own country.” 122

2.1.3.

Other International Instruments

In addition to the ratification of the CRPD and CRC, Uganda is a signatory to various international instruments that aim to promote education for all, with emphasis on learners with special needs. These include among others the Jomtien Agreement of 1990 according to which world leaders pledged to provide all children with an appropriate education regardless of their individual differences. The 1994 Salamanca Agreement was further impetus to the provision of special needs education. In 2000, the Millennium Development Goals and the World Education Forum in Dakar, Senegal, set the goal of achieving universal primary completion and Education for All by 2015 by including within the educational mainstream all traditionally excluded and marginalised groups.

2.2.

The Ugandan Regulatory Framework Relating to Children with Disabilities The Ugandan legal and policy framework defines a child with a disability as a person below eighteen years “with a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environment barriers resulting in limited participation” (PwDs Act / Part 1, Section 1). In the educational context, learners with disabilities are persons with: “i) Intellectual Impairments, ii) Specific Learning Difficulties, iii) Hearing Impairment, iv) Visual Impairment, v) Physical Impairments, vi) Health Impairments, vii) Speech and Language Disorders, viii) Social, Emotional and Behavioural Difficulties /Disorders, and those who are; Gifted and Talented, ix) Left handedness and x) Multiple disability (a combination of two or more impairments)” (Draft Policy in SN&IE / Section 3 (4)).

Non-discrimination on the ground of disability is emphasised in Article 21 of the Constitution of Uganda, while the fight against stigmatisation and the discrimination of persons and children with disabilities is reiterated in the National OVC Policy (Section 4(3)). Furthermore, the Ugandan framework promotes affirmative action and equal opportunities for PwDs, which includes CwDs, to address the imbalances and inequalities they face in life (Constitution / Article 32).

2.2.1.

The Regulatory Framework Relating to Health

This section analyses how the existing Ugandan laws and policies promote and protect the right to life, access to health services and the (re)habilitation of CwDs. In the health and

122

Save the Children, Promoting the Rights of Children with Disabilities, 2008.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda (re)habilitation fields, they consist of the Constitution of Uganda of 1995, the NDP of 2010, the PwDs Act of 2006, the National Policy on Disability of 2006, the Children Act of 1996, the National OVC Policy of 2004 and the NHP II of 2010.

These laws and policies promote and protect the rights of CwDs as follows: Article 22 (2) of the Constitution of Uganda recognises the right to life to any person and this provision also applies to unborn CwDs. Some policies assess the current situation and barriers faced by PwDs, including CwDs, in accessing (re)habilitation and health services. The NDP identifies the lack of orthopaedic workshops and of affordable assistive devices as two of the main problems and calls upon Government and stakeholders to address these challenges (Section on the social sector and education subsector). Unfriendly and inaccessible health infrastructures, negative attitudes of hospital and health centre staff towards PwDs and CwDs are also identified as some of the challenges faced by persons and children with disabilities (National Policy on Disability / Section 1 (4) (8) and NHP II / Section 2 (8) (2)).

To address these barriers, the right to equal access to health services by PwDs is reiterated (PwDs Act / Section 7, National OVC Policy / Section 5 and NHP II / Section 6 (1)). The measures, which need to be taken to deliver these services to PwDs, including CwDs, are described in several laws and policies. The Children Act provides for assessment and (re)habilitation of CwDs (Section 9). The PwDs Act identifies several provisions: provision of accessible medical information, integration of sign language (SL) training in the health professional curriculum and specific training in the needs of PwDs, provision of specific sexual and reproductive health services to women and girls with disabilities to keep them alive (Section 7). However, the realisation of these services has so far not been realised due to inadequate resource allocation.

2.2.2.

The Regulatory Framework Relating to - InclusiveEducation This section analyses how the existing Ugandan legal and policy framework promotes and protects the right to education of CwDs. This consist of the Constitution of Uganda of 1995, the NDP of 2010, the Education (Pre-Primary, Primary and Post-Primary) Act of 2008, the UNISE Act of 1995 amended by the University and Other Tertiary Institutions Act of 2001, the draft SN&IE Policy, the draft Non-Formal Educational Policy for Educationally Disadvantaged Children, the PwDs Act of 2006, the National Policy on Disability of 2006, the Children Act of 1996 and the National OVC Policy of 2004.

These laws and policies promote and protect the rights of CwDs as follows.

The 1995 Constitution of Uganda provides for the constitutional right to education for all (Article 30) and the equalisation of opportunities for all disadvantaged groups, including CwDs (Article 32). The PwDs Act, 2006, specifically outlines the legal provision of access to education for persons and children with disabilities (Sections 5 and 6) and calls for not less than 10% of the education budget to be allocated to the education needs of CwDs. This provision is reaffirmed in the draft SN&IE Policy (Section 2 (11)). This right to education is directly or indirectly reiterated in several laws and policies (Education Act / Schedule 1, part I and II, section 4 (2) and (3); National Policy on Disability / Section 1 (4) and National OVC Policy / Section 5)). The provisions for SNE and IE are described in the draft SN&IE Policy and

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda draft Non-Formal Education Policy for Educationally Disadvantaged Children (Section 1 (1), (2) and (3)).

Specific barriers and challenges, which restrict access to education for CwDs, are identified and measures to overcome them outlined. The first barrier to be identified is the inaccessibility of education buildings, including latrines, toilets and classrooms, for CwDs (NDP / Section on the social sector and education subsector; PwDs Act / Sections 12 and 20; and Draft SN&IE Policy / Section 2 (4)).

The second challenge consists of the lack of alternative formats of the educational curriculum and of accessible scholastic material (Draft Non-Formal Education Policy for Educationally Disadvantaged Children / Section 2 (2); NDP / Section on the social sector and education subsector; Draft SN&IE Policy / Sections 2 (4) and 5 (7)). It is the responsibility of the Faculty of Special Needs and Rehabilitation of the Kyambogo University to address these specific needs of pupils and student with disabilities as well as to provide assistive devices and train teachers in SN&IE (UNISE Act / Section 5 (d)).

The final challenge identified in these laws and policies is the lack of SN&IE trained teachers.

It is therefore planned to include a SN&IE training module in the teacher training curriculum and specific SN&IE training for teachers to enable them to teach all children including CwDs in mainstream schools (PwDs Act / Section 5; draft SN&IE Policy / Section 2 (3); NDP / section on social sector and education subsector; and UNISE Act / Section 4 and 5 (a) and (g)).

2.2.3.

The Regulatory Framework Relating to Protection of Children This section analyses how the Children Act, the National OVC Policy and the Child Labour Policy form the child protection legal framework defining the rights of all children, including CwDs, and protecting them from all violence and abuse.

These laws and policies aim to create an environment where CwDs can live safely and fulfil their maximum potential.

The Children Act is the main legislation that instrumentalises Article 34 of the 1995 Constitution of Uganda which calls for the enactment of legal provisions promoting and protecting the rights of all children. The overall aim of the Children Act is to lay out the measures that must be put in place to ensure the welfare of all children, including CwDs. Both the National OVC Policy and the Child Labour Policy specifically targets CwDs, among other categories of vulnerable children, to protect them from abuse and violence (Section 5) and to eliminate CwDs’ labour in communities (Section 10).

2.3.

Overview of National and Local Government Institutions Leading the Implementation and Monitoring of Each Legislation and Policy Targeting Children with Disabilities Living in Uganda Although all national and/or local Government Institutions are responsible for the application of legislation and policies, some Ministries or District Institutions are leading their implementation and monitoring. The below table 1 shows this in detail.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Table 10: Overview of the National and Local Government Institutions Leading the Implementation and Monitoring of Each Legislation and Policy Targeting CwDs Living in Uganda MoGLS D

Constitution of Uganda

X

Local Government Act

X

MoES

X

MoH

X

NDP

MoFPE D

X

EOC

NCD

NCC

X

X

X

X

X

X

X

X

X

X

District District s Council for Disabili ty

X

PwDs Act

X

National Policy on Disability

X

X

X

X

X

NCD Act

X

X

X

X

X

EOC Act

X

Children Act

X

X

X

NCC Act

X

X

X

X

X

X

X

X

X

Child Policy

Labour

National Policy

OVC

X

X

UNISE ACT

X

X

X

X

X

X

Draft NonFormal Education Policy

X

X

X

Draft Policy

X

X

X

NHP II

X

X

Education Act

SN&IE

X

X

X

X

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X

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 5: Mapping of Programmes and Active Stakeholders Working in the Disability Field in Uganda Various stakeholders are active in the disability field in Uganda. Several UN Agencies have developed programmes targeting persons and children with disabilities. Approximately ten donor organisations such as national development agencies and foundations fund programmes. The Ugandan Disability Movement is one of the most vibrant in Sub-Sahran Africa and mainly supported by counterpart DPOs from Denmark and Norway. International and Ugandan NGOs also run several programmes targeting CwDs living in Uganda.

In addition to this section, a comprehensive overview of programmes operating in the fields of education, health and (re)habilitation and sport and of projects targeting girls with disabilities, empowering CwDs and promoting their human rights, mainstreaming the perspective of CwDs and building the capacity of Ugandan DPOs are presented in Annex 1.

This mapping exercise provides an overview of what has been done in the past, what is currently ongoing, what has been achieved and what has been less successful.

1. United-Nations Agencies Identifying activities led by other UN Agencies represents the basis for potential coordination within the UN bodies present in Uganda. This will ultimately benefit CwDs, who are the adults with disabilities of tomorrow. At present, three UN Agencies run programmes targeting persons and children with disabilities in Uganda.

1.1.

The Office of the High Commissioner for Human Rights

The OHCHR is the UN Agency responsible for the protection and promotion of all human rights, including disability rights. In Uganda, the OHCHR focuses on the domestication of the CRPD and supports the reporting process of the Government of Uganda to various UN Committees (e.g. Human Rights Committee or CRPD Committee). In practice, the OHCHR office in Uganda is involved in several activities relating to disability rights.

Initially, the OHCHR organised awareness-raising and advocacy events for the ratification of the CRPD by Uganda what was successfully achieved in September 2008. Since then, the OHCHR has shifted its engagement and trained representatives of Ugandan DPOs and of national authorities mandated with promoting the rights of PwDs. This aimed to ensure that national decision-makers and stakeholders are granted the necessary knowledge and understanding of the disability rights enshrined in the Convention. Similar trainings are planned for 2014/15 at regional level.

The OHCHR has also delivered technical assistance to Uganda to support the state obligations and the domestication of the Convention. In 2009, the Office has screened the

65

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Ugandan legal framework relevant to PwDs in comparison to the CRPD obligations 123. Then, the OHCHR has assisted the Government of Uganda in drafting its Initial Report to the CRPD Committee. This has been delivered in December 2012 124. In addition, the OHCHR supports the establishment and review of legislation and policies in line with the CRPD provisions.

Recently, it has engaged with the MoH and submitted a human rights commentary to the proposed Mental Health Bill. The OHCHR has also closely followed the discussions between Government Ministries on the review of the PwDs Act from 2006 and strongly advocates for an inclusive approach to education (rather than a special needs education one).

Furthermore, the OHCHR has created a framework to monitor Uganda’s implementation of the recommendations arising from the international human rights mechanisms (i.e. Treaty body mechanisms and the universal periodic review). Based on a thematic clustering, this tool highlights the recommendations and provides with base-line targets. The OHCHR in Uganda does not aim to cross-cut the mandate of other UN Agencies and considers that UNICEF Uganda should take responsibility of the several recommendations relating to CwDs. Finally, the OHCHR currently designs a programme on transitional justice and has decided to mainstream the perspective of PwDs. Together with the MoH, the needs of persons with various disabilities have been taken into account. This included the establishment of four surgery centres, the provision of assistance for people with mental and psychosocial disabilities and the need for a better understanding of disability as a consequence of conflicts in the region.

1.2.

The United Nations Population Fund

The United Nations Population Fund (UNFPA) mission is “to address population and development issues with an emphasis on sexual and reproductive health and gender equality”125. In Uganda, the UNFPA office has mainstreamed disability in their activities and recently produced two studies: - Conducted in 2012, the first study aims to assess how maternal health services are delivered to women with disabilities across the country 126. It specifically addresses services accessibility at sexual and reproductive health and HIV/AIDS services delivery points in the three districts of Moroto, Mubende and Oyam. The study found out that PwDs do not feel discriminated and that the attitudes of staff are seen as positive, except for pregnant woman with disabilities. This is most probably due to the lack of accessibility of health material. The main problems, which were identified, are the

123

Office of the High Commissioner for Human Rights (OHCHR), Working Paper – A Review of the Ugandan Legal Framework Relevant to Persons with Disabilities - Comparative Analysis to the Convention on the Rights of Persons with Disabilities, August 2008.

124 Government of Uganda, United Nations Convention on the Rights of Persons with Disabilities, Uganda’s Initial Status Report 2010, 2010.

125 United Nations Population Fund (UNFPA), http://www.unfpa.org, 2014, (Accessed on 4 April 2014).

126

United Nations Population Fund (UNFPA), Aids Information Centres Uganda (AIC), National Union of Disabled People in Uganda (NUDIPU), Services accessibility for people with disabilities at sexual and reproductive health and HIV/AIDS services delivery points, Report of a Study in three Districts of Uganda (Mubende, Oyam and Moroto), 2010.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

-

remote geographical situation of these service delivery points and the lack of accessibility of the buildings.

In 2013, UNFPA supported the MoGLSD to conduct a legal audit of the existing policies, laws and programs in regard to sexual and reproductive health of PwDs 127.

The report highlights that the legislation is broadly in line with the provisions of the CRPD and other UN Treaties, but their implementation remains a challenge. On the basis of these outcomes, it is recommended to adopt a multi-sectoral approach and invest in the implementation of policies.

1.3.

The World Health Organisation

The WHO is “the directing and coordinating authority for health within the UN system.”128 In Uganda, WHO has no specific programme or project to prevent disability among children.

However, WHO supported the adoption of the Decade of Action on Road Safety Action Plan that is built on five pillars, namely: (a) road safety management, (b) safer roads and safer mobility, (c) safer vehicles, (d) safer road users and (e) post-crash response. Road safety cuts across sectors including, among others, education, works, urban planning, health and police.

All these sectors were involved in the adoption of this action plan and each one of these contain activities in its jurisdiction to reduce crash related-deaths and acquisition of impairments. This also indirectly benefits children.

2. Donor Organisations 2.1.

National Development Agencies

Three national Development Agencies have specific programmes funding initiatives relating to PwDs and CwDs living in Uganda. The three of them have been supporting PwDs for over ten years. Their focus is on capacity building of Uganda DPOs (Danish International Development Agency (DANIDA) and USAID), education of children and persons with disabilities (DANIDA) and CBR (NORAD).

2.1.1.

The Danish International Development Agency

DANIDA addresses the needs and promotes the rights of persons and children with disabilities in Uganda. For example, in 1992, DANIDA funded the creation and running of the Education Assessment and Resource Services (EARS). This led to the establishment of the Special Needs / IE Department within the MoES and of UNISE, now Faculty of Kyambogo University. This DANIDA programme has now phased out.

DANIDA also funds many programmes targeting persons and children with disabilities through the Disabled People Organisation of Denmark (DPOD) and its disability specific

127

United Nations Population Fund (UNFPA), Ministry of Gender, Labour and Social Development (MoGLSD), An Audit Report on the Key Existing Policies, Laws, Plans, Programs and Guidelines on Sexual Reproductive Health, HIV/AIDs and Gender Based Violence, on their compliance to the rights of Persons with Disabilities, 2013.

128

World Health Organisation (WHO), http://www.who.int/about/en/, 2014, (Accessed on 4 April 2014).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda member organisations. DPOD, which is the national organisation of PwDs in Denmark, directly funds NUDIPU and NUWODU. LEV, the Danish organisation representing parents of children with intellectual disabilities, supports the activities of UPPID. These DANIDA grants allocated via the Danish DPOs target both the building of organisational and advocacy capacities of Uganda DPOs and specific projects relating to various areas (e.g. education, gender, HIV/AIDs - Refer to Section 7).

2.1.2.

The Norwegian Cooperation

Agency

for

Development

In the past decade, NORAD has taken a human rights approach and mainstreamed the perspective of PwDs in all its programmes. Published in 2012, two reports have assessed how the Norwegian aid promoted the disability rights between 2000 and 2010129. “Between 2000 and 2010 the total funding targeting PwDs was 240 million US dollars. In addition to the targeted support, the report identifies a few general programs in which disability aspects have been mainstreamed. These projects had a total budget of 1,6 billion Norwegian kroner of which only a small part (less than 1%) went to facilitating the inclusion of PwDs.” 130 Around 2% of the development and humanitarian aid received by Uganda from Norway directly targets PwDs131. The majority of this support goes to the funding of CBR activities132 and the main effects of the Norwegian aid are therefore visible in the (re)habilitation and health sector133.

NORAD continues its efforts in this direction. It has recently designed a new human rights Policy, which includes disability rights. In 2013, the Norwegian Ministry of Foreign Affairs developed the document “Norway’s international efforts to promote the rights of PwDs”.

With this, NORAD aims to strengthen its human rights based mainstreaming approach in the allocation of grants. NORAD implementing partner organisations also have the obligations to take the perspective of persons and children with disabilities on board. Practical guidelines for the Norwegian Foreign Service about a human rights-based approach to development, which includes disabled people as one of several vulnerable groups in international development, are in the making but not yet published.

129

Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm - Evaluation of Norwegian support to promote the rights of persons with disabilities, 2012; and Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm - Evaluation of Norwegian support to promote the rights of persons with disabilities Uganda country study – Summary, 2012.

130 Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm - Evaluation of Norwegian support to promote the rights of persons with disabilities, 2012, p. iii.

131 Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm; Evaluation of Norwegian support to promote the rights of persons with disabilities; Uganda country study – Summary, February 2012, p. 4.

132 Basil Kandyomunda, Baseline Report of the Research and Documentation Project: Existing Documentation related to CBR Programmes in Uganda.

133

Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm; Evaluation of Norwegian support to promote the rights of persons with disabilities; Uganda country study – Summary, February 2012, p. 4.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda In practice, NORAD has taken a two-fold approach: (a) mainstreaming and inclusion of the perspective of persons and children with disabilities, for example in the education and health sectors, and (b) targeted projects for the specific needs of PwDs and CwDs based on the explicit demand of DPOs, for example CBR activities. Both approaches are important and complement each other.

NORAD has several departments and sections directly involved with disability issues: - The Section for Rights and Gender Equality of the Department for Economic Development, Gender and Governance is the focal point for disability matters.

- The Section for Education of the Department for Global Health, Education and Research acts as technical advisor to the Norwegian Ministry of Foreign Affairs and Embassies. Bilateral and multilateral funds are channelled through the Norwegian Ministry of Foreign Affairs: for example, the education sector support programme is supposed to mainstream disability and provide for the educational needs of pupils and students with disabilities, alongside the needs of any other children.

- The Section for Development Initiatives of the Civil Society Department channels funds to CSOs, including DPOs.134 Currently, NORAD has cooperation or project agreements with several CSOs, DPOs and NGOs implementing programmes targeting CwDs in Uganda. In 2013, the Adina Foundation received approximately 117,000 US dollars (USD) from NORAD, the Atlas Alliance 1 million USD, Lions Aid Norway 61,000 USD, Plan Norway approximately 1,4 million USD, Right to Play 567,000 USD, Save the Children Norway approximately 4 million USD and the Strømme Foundation approximately 696,000 USD.

2.1.3.

The United-States Development

Agency

for

International

In 1997, USAID adopted a Disability Policy Paper aiming to mainstream the perspective of PwDs in its aid programmes and to support disability specific projects to fight discrimination on the grounds of disability. In 2002, USAID established the Omega initiative which “provides funding and technical support through subgrants for a broad range of advocacy, awareness raising, and (re)habilitation services for civilians with disabilities that resulted from war” in Sub-Saharan Africa. In December 2013, USAID intensified its efforts and opened a Disability Grant Programme. Supported by the Centre of Excellence on Democracy, Human Rights and Governance, this programme aims to support the active involvement of PwDs in the USAID aid programmes relating to, among others, education or gender equality. It also provides for the capacity building of DPOs. Finally, USAID is a member of the GPcwd.

In 2005, Uganda was chosen as a focus country to further implement the USAID Disability Policy and specific funding of one million US dollars was made available under the Omega

134

Engh, Ida-Eline, Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda initiative135. In 2008, USAID/Uganda identified disability as a cross-cutting issue but has no specific disability plan136. USAID/Uganda has provided capacity-building support to Uganda DPOs such as NUDIPU and USDC. Finally, USAID/Uganda currently funds three major programmes relating to OVC and they also include CwDs: the SCORE project, the SUNRISE project and the Inter-Religious Council of Uganda (IRCU) project (Refer to Annex 1 for detailed information). Another relevant project targeting persons and children with disabilities is the CSOs Fund, which USDC benefited from. USAID/Uganda plans to continue implementing programmes targeting OVC: two major programmes are currently being designed. As long as there will be OVC projects, CwDs will be covered.

2.2.

Foundations

British, Dutch, Italian, Liechtenstein, Norwegian and US-based foundations support small scale projects mainly run in partnership with Ugandan DPOs. Those initiatives relating to CwDs focus on access to health, (re)habilitation, education and sport.

Motivation UK “is an international development charity supporting people with mobility disabilities. Motivation UK design high-quality and low cost wheelchair for PwDs living in developing countries and run four programmes relating to survival, mobility, empowerment and inclusion”137. In Uganda, Motivation UK has supported many orthopaedic and plastic surgical outreaches 138. The organisation currently funds the SIDU project on access to sport by children and young PwDs led by GDPU. The Jersey Overseas Aid Commission (JOAC) aims to reduce poverty in the poorest countries in Latin America and Africa by making a sustained contribution. The JOAC’s grants fund projects in the area of health and care, WASH, education, humanitarian crisis and food security139. In Uganda, JOAC co-funds the Bringing Health Services Closer to CwDs project led

by USDC. The Liliane Foundation aims to “open the world for CwDs in in developing countries by giving them access to healthcare, education, employment and legal systems”140. Based in the Netherlands the Liliane Foundation works through partnership with local organisations and has a coordination team in Uganda. Liliane Foundation funds USDC activities relating to education, health and (re)habilitation.

“The Terre Des Hommes International Federation is a network of ten national organisations working for the rights of children and to promote equitable development without racial,

135

United-States Agency for International Development (USAID), Fifth Report on the Implementation of USAID Disability Policy, 2008, p. 18.

136 United-States Agency for International Development (USAID), Fifth Report on the Implementation of USAID Disability Policy, 2008, p. 21.

137

Motivation, http://www.motivation.org.uk/, 2013, (Accessed 13 December 2013).

Ssebadukka, Fred, Were, Dolorence, Dr. Baingana Nganwa, Alice, Chapter 10: Health care services for People with Disabilities (PWDs) in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010.

139 Jersey Overseas Aid Commission (JOAC), http://www.jerseyoverseasaid.org.je/Home/, 2013, (Accessed 20 November 2013).

138

140

Liliane Foundation, http://www.lilianefonds.org/, 2013, (Accessed 11 November 2013).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda religious, political, cultural or gender-based discrimination”141. The Terre des Hommes Netherlands funds programmes in Uganda and it supports several USDC projects: the Health, Education and Training for CwDs and the Protecting and Promoting the Rights of Disabled Children in Uganda Project. It additionally funds an UPPID project to support the enrolment of children with intellectual disabilities in school.

The AVSI Foundation is an international NGO and its mission is “to support human development in developing countries with special attention to education and the promotion of the dignity of every human person, according to Catholic social teaching” 142. In the past ten years, AVSI has been involved in many programmes aiming to improve the living conditions of persons and children with disabilities. The organisation has supported many orthopaedic and plastic surgical outreaches. 143 It continues to be involved in CBR activities and runs a project aiming to improve quality of life of CwDs in Uganda in partnership with USDC. Medicor Foundation funds “projects in the field of education, health and social care in order to improve the wellbeing and empowerment of vulnerable and disadvantaged people in countries in Africa, Latin America, the Caribbean and Eastern Europe.” In Uganda, Medicor Foundation co-funds the Bringing Health Services Closer to CwDs project led by USDC. Based in Norway, the Strømme Foundation aims to “a world without poverty and runs longterm development work with local partner organisation in the South in the education and micro-finance field”144. In 2013, the Strømme Foundation received 4,173,000 Norwegian Crones (or approximately 696,000 US dollars) from NORAD145. The Foundation currently runs the Community-Based Education Intervention and Economic Empowerment Programme across the country which aims to strengthening basic, formal and informal education. One of the activities in partnership with UNICEF is to study the causes of school dropout rates of children, including CwDs. The American Jewish World Service (AJWS) is a “Jewish human rights and development organisation working to realise human rights and end poverty in the developing world by providing financial support to local grassroots and global human rights organization [worldwide]”146. The organisation focuses on three areas of work: (a) Advancing the health and human rights of women, girls and LGBT people, (b) Promoting recovery from conflict and oppression and (c) Defending access to food, land and livelihoods. In Uganda, AJWS run a Northern Uganda CwDs Program and funds projects run by NUWODU, GUWODU and USDC. Bread for the World is “a collective Christian voice urging US decision makers to end hunger at home and abroad. By changing policies, programs and conditions that allow hunger and

141

Terre des Hommes Netherlands, www.terredeshommesnl.org, 2013, (Accessed 3 December 2013).

Association of Volunteers in International Service (AVSI), http://www.avsi.org/who-we-are/, 2013, (Accessed 12 December 2013).

142

143

Ssebadukka, Fred, Were, Dolorence, Dr. Baingana Nganwa, Alice, Chapter 10: Health care services for People with Disabilities (PWDs) in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010.

144

Strømme Foundation, http://strommestiftelsen.no/english, 2013, (Accessed 13 December 2013).

Engh, Ida-Eline, Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

145

146

American Jewish World Service (AJWS), http://ajws.org/, 2013, (Accessed 20 November 2013).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda poverty to persist, [Bread for the World] provides help and opportunity” for all.147 Bread for the World supports USDC activities in promoting the rights of CwDs and access to health and rehabilitation services in Hoima District.

3. Civil Society Organisations of Persons with Disabilities Running Programmes Targeting Children with Disabilities Living in Uganda Uganda has a strong Disability Movement and the national DPOs such as NUDIPU and NUWODU are relatively well structured and representative of all categories of PwDs. They have also had significant advocacy successes over the years, such as the allocation of five seats in Parliament of Uganda to represent PwDs from the five regions of the country.

However, there are very few Ugandan organisations of or for CwDs. Established in 1985, USDC is the only national and cross-disability organisation voicing the needs and rights of CwDs. The main objectives of the organisation consist of “raising public awareness about disability, empowering parents through PSGs, lobbying for disability inclusive policies, programmes and legislation at local and national government levels, empowering CwDs and sensitizing primary students through Child Rights Clubs and facilitating individual CwDs to access services for rehabilitation.” 148 At present, USDC operates in only fourteen Districts (Arua, Adjumani, Buliisa, Hoima, Iganga, Jinja, Kampala, Luwero, Masaka, Masindi, Moyo, Nebbi, Soroti and Yumbe) and reaches out to around 7,000 CwDs every year.

Two other small organisations representing and targeting CwDs have also been identified: - Established in the 2000s, Save the Children with Disabilities is a small Ugandan organisation active in the Western region. They currently run a project in Ntungamo using Ugandan private sources. The organisation aims to identify and assist CwDs in their everyday life, sensitise the families, communities, care givers and decision makers149.

- “Ka Tutandike Uganda (KTU) is a community-based organisation, founded in 2006, whose mandate is to empower vulnerable communities in Uganda. We are primarily child focused, employing a multi-sectoral approach to unlock the potential that exists within poor communities.” KTU leads the Uganda National Coalition for the Deaf (UNCD): this is a national coalition of NGOs working on deafness which started in August 2011. The UNCD organised a National Symposium on Education of the Deaf Child on 17th August 2011. One of the outcomes consisted of recommendations to the drafting of the SN&IE Policy. In addition, KTU carried out workshops about reproductive health awareness and life skills acquisition for children in three schools

147

Bread for the World, http://www.bread.org, 2013, (Accessed 12 December 2013).

148

Uganda Society for Disabled Children (USDC), USDC Strategic Plan 2013-2019, 2012.

149

Save the Children with Disabilities, http://www.ugandangodirectory.org/index.php?option=com_mtree&task=viewlink&link_id=68&Itemid=2, 2013, (Access on 17 November 2013).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda for the deaf and trainings in SL for professionals and service providers in Masaka District.150.

Last but not least, the role of parents of a CwD is pivotal because they are the primary persons who will take care of and educate the child. The only organisation involving parents of CwDs is UPPID. Formerly called Uganda Parents of Children with Learning Disabilities (UPACLED), it was founded in 1995 and registered as an NGO in 1998 so that parents could come together to find ways and means to support their CwDs. Since the beginning, UPPID has been supported by LEV. UPPID exists in thirty nine Districts with a District Executive Committee and countrywide with three regional offices based in Mbale, Fort Portal and Kampala. The headquarters are in Entebbe. UPPID aims to mobilise, sensitise and empower parents of CwDs. UPPID representatives go to Districts to identify and speak with parents of CwDs. Their first objective is to support parents to “accept they have a child like that and help them to bring their child outside for the community to see”. UPPID also organises meetings with knowledgeable people such as physiotherapists and education specialists in order to build the awareness and capacity of parents to take care of their child. 151 As part of the LEV funded Jombola project, self-help groups of parents have been formed in the Districts.

Most Ugandan DPOs are financially and technically supported by foreign DPOs. The Danish and Norwegian DPOs have been active in Uganda for several decades. In most cases, these foreign DPOs support their Ugandan counterparts. DPOD, the national umbrella organisation of Denmark, has been working in Uganda since the 1980s and it supports the national umbrella organisations of Uganda, NUDIPU and NUWODU. The Danish disability specific organisations support their disability counterparts – so for example LEV supports UPPID, the Danish Mental Health Association (SIND) supports Mental Health Uganda (MHU) and the Association of Danish Deaf-Blind People (FDDB) supports NADBU. However sometimes DPOs from the same country form an association and specialise in disability and development. So, for example, the Atlas Alliance consisting of Norwegian organisations of PwDs, parents and patients is involved in international development work.

It receives funding from NORAD to conduct its programmes in Uganda, although its focus is on young PwDs and not on CwDs. The Atlas Alliance received approximately 6 million Norwegian Crones (approximately 1 million US dollars) in 2013. They work with local partners and have a mix of mainstreaming and disability-specific projects. They have four programmes: - Grant to the Uganda National Association of the Blind (UNAB) to support its organisational development (518,000 Norwegian Crones or approximately 86,000 US dollars).

- Grant to finance the regional offices of UNAB (756,000 Norwegian Crones or approximately 126,000 US dollars) - Economic empowerment, National Union of the Disabled People of Uganda (NUDIPU): develop a model for saving and credit self-help groups of disabled in order

150

Ka Tutandike (KTU), www.katutandike.org, 2013, (Accessed 15 November 2013).

Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

151

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

-

to include PwDs in Microfinance. It is handed in partnership with the government to increase inclusion of farmers with disabilities (3,634,000 Norwegian Crones or approximately 606,000 US dollars).

Education in conflict areas, Education for blind and partially sighted children and youth in Northern Uganda (1,120,000 Norwegian Crones or approximately 187,000 US dollars)152.

4. Non-Governmental Organisations Running Programmes Targeting Children with Disabilities Living in Uganda Many child-specific iNGOs are active in Uganda but few of them have specific programmes targeting CwDs. However, with the CRPD adoption and ratification worldwide, these iNGOs have started to get involved with this specific target group.

4.1.

Able Child Africa

AbleChildAfrica is another iNGO running programmes targeting CwDs living in Uganda.

AbleChildAfrica was “initially founded in 1984 as USDC to support children injured by the Ugandan Civil War in the 1970s and 1980s. In 2007, USDC in the UK became AbleChildAfrica and began supporting work with CwDs in other countries such as Kenya and Tanzania.

AbleChildAfrica works towards a world in which all CwDs are fully included as equal members of society and are able to achieve their full potential” 153. AbleChildAfrica continues to support USDC activities.

4.2.

The African Child Policy Forum

“ACPF is an independent, not-for-profit, pan-African institution of policy research and dialogue on the African child.”154 ACPF has assessed the situation of CwDs living in Uganda.

With the support of Save the Children Sweden, ACPF undertook a multi-country study to evaluate the situation of CwDs in East Africa in 2011. The ACPF Report CwDs in Uganda – A Hidden Reality is one of the most comprehensive studies on the topic.

4.3.

Humane Africa

“Humane Africa works with local implementing partners in Southern and Eastern Africa to protect children from harmful practices such as mutilation and the removal of body parts and abuse and discrimination of CwDs. Using a social norms process, communities’ design and implement responses designed to bring the entire community to collectively abandon

152

Engh, Ida-Eline, Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

153 AbleChildAfrica, http://ablechildafrica.org/, 2013, (Accessed 11 November 2013).

154 African Child Policy Forum (ACPF), http://www.africanchildforum.org/site/index.php/who-we-are.html, (Accessed 12 November 2013).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda these harmful practices.”155 Humane Africa has very recently produced a study briefly assessing the situation of CwDs in Uganda taking a behavioural approach.

4.4.

L’Arche

The L'Arche community in Uganda is based in Kampala. It supports nineteen persons with learning disabilities and a further twenty PwDs are welcomed in the day provision service.

Most of these young children and adults are orphaned or abandoned because of the stigma attached to learning disabilities. The L’Arche pprogramme are dedicated to institutional (re)habilitation for CwDs.156

4.5.

Plan

Plan mainstreams disability in its child protection programmes - one of the components of its ‘Strengthening National Protection System’ programme concerns CwDs. Its purpose is to ensure that laws and policies are put into practice. This programme is running in five Districts (Kamuli, Tororo, Luwero, Lira and Alebtong) from 2011 until 2015. It is funded by NORAD. Plan has a Memorandum of Understanding (MoU) with the MoGLSD for the implementation of the programme. This component has four main principles underlying its activities: delivering (re)habilitation to CwDs, inclusion in access to social services (e.g. education, health and transport), integration in family life and empowerment of children. It is composed of two core activities targeting CwDs: - The CBR aspect focuses on medical (re)habilitation: Plan refers CwDs to CoRSU and pays for all costs of the surgery. Around 100 children have been operated on so far and the budget is thirty million Uganda Shillings.

- Plan promotes disability as a social issue and targets parents of CwDs via the 100 parents’ support group existing in Uganda. Through awareness raising programmes, parents of CwDs realise that their children are not sick or cursed. They are also trained to make their own AT as this is more affordable.

Additionally, Plan has a MoU with the NCD. However, the NGO considers that the NCD is weak and needs support to develop its strategic planning capacity157.

Finally, through Plan Norway, NORAD funds two projects mainstreaming CwDs in Uganda. In 2013, NORAD allocated 8,7 million Norwegian Crones (or approximately 1,4 million US dollars) to Plan. These programmes are the following ones: - Strengthen child protection mechanisms in Uganda: The overall development goal of the programme is to strengthen the national child protection system in Uganda to effectively respond to and prevent violence against children, particularly marginalised children including CwDs and girls (Approximately 5,780,000 Norwegian Crones or approximately 964,000 US dollars).

155

Humane Africa, http://www.humaneafrica.org/, (Accessed 5 February 2014).

L’Arche, http://www.ugandangodirectory.org/index.php?option=com_mtree&task=viewlink&link_id=126, (Accessed 13 November 2013).

156

157

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Inclusive participation of children and youth in Lira and Kamuli: The overall development goal of the project is “to create inclusive opportunities for children and youth voices to be heard and influence decision-making and actions in local and national development” (2,920,000 Norwegian Crones or approximately 487,000 US dollars)158.

4.6.

Save the Children

Save the Children in Uganda has not developed any systematic mainstreaming of the perspective of CwDs or designed projects specifically targeting them. During the design and implementation of education-related projects, issues relating to CwDs have however been raised by some stakeholders and Save the Children then tends to start taking into account their perspective in its activities.

Through Save the Children Norway, NORAD funds five programmes in Uganda for an amount of 24 million Norwegian Crones (approximately 4 million US dollars) in 2013. All programmes are supposed to mainstream the perspective of CwDs: this implies that the activities are designed for all children but that there are no additional and specific activities targeting CwDs. However, NORAD is unsure at to which degree CwDs are included in all the Save the Children programmes. These programmes are the following ones: - Education, Uganda District Education Office: Save the Children, in cooperation with partners, aims to improve the quality of education, increase access to schooling for hard to reach out of school children, increase access to quality Early Childhood Development Education programmes, increase access to quality non-formal, postprimary vocational training, as well as increase government financing to the Education Sector (18,401,000 Norwegian Crones in 2013 or approximately 3 million US dollars).

- HIV/AIDS Uganda, Mitigate the impact of HIV and AIDS on children and their families: it aims to improve access to quality HIV and AIDS prevention, care and treatment services, including mother to child transmission of HIV, for children and their families (542,000 Norwegian Crones or approximately 90,000 US dollars).

- Child protection: Save the Children in Uganda works with over eighteen partners on a broad range of child protection work. The strategic objectives aim at strengthening community based child protection systems to prevent and respond to abuse, exploitation and violence against children and advocacy for increased government capacity to prevent and respond to child protection issues (1,854,000 Norwegian Crones or approximately 309,000 US dollars).

- Uganda Child Rights NGO Network (UCRNN). The project aims to strengthen systems and mechanisms at national and local levels for monitoring and reporting on the CRC, enhance the capacity of the Government of Uganda towards accountability for the rights of the child and strengthen the knowledge and capacity of children, caregivers, community members, civil society to respect and promote child rights. (2,852,000 Norwegian Crones or approximately 476,000 US dollars).

158

Engh, Ida-Eline, Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Emergency Preparedness and response: Children have their immediate needs covered, have access to education, and are protected and supported to return to a normalised living environment (457,000 Norwegian Crones or approximately 76,000 US dollars)159.

In addition, following the African Day of the Child dedicated to CwDs in 2012, Save the Children in Uganda held an internal and organisational self-assessment in relation to disability. This consisted of a disability related session during a staff meeting. Several men and women with disabilities were invited to discuss with Save the Children staff how the organisation takes into account, or does not, the perspective of CwDs. Topics covered the inaccessibility of the Save the Children offices and the need to consult with CwDs in the strategic planning processes of the organisation. An action plan was developed to change the internal processes of the organisation, although no outcomes are as yet visible.

Save the Children also undertook a rapid mapping exercise in the Karamoja region in 2012 to assess the needs of children and CwDs. This exercise notably demonstrated that CwDs require assistive devices to be able to attend school. For example, in one case study, a CwD studied for three consecutive years at P7 level because he was unable to take the final examination of primary school in Braille. Inspectors were interviewed and they considered that the attitude of teachers and head masters was a decisive factor for CwDs to attend school. Inspectors also reported that they lack training in Special Needs and IE. However, there are strong concerns about the results of this mapping. The mapping primarily considered children and only incidentally CwDs. The methodology was not precisely described and it seems that the approach taken to count CwDs was medically-oriented, focusing on the impairments of children.

Globally, Save the Children has developed a monitoring and evaluation tool that all offices must use to evaluate the quality of the learning environment (QLE) to design and assess the implementation of a project. This tool is based on four guiding principles: (a) a safe and protective environment, (b) an emotionally stable environment, (c) learning based on children needs and (d) partnership between schools and communities. None of these principles take either inclusiveness and/or accessibility into consideration. Despite this limitation, the tool was applied in Uganda and has uncovered relevant issues for CwDs. For example, during the design of a project relating to access to literature in Gulu, it has been assessed that there was a need for support material for CwDs. Finally, Save the Children in Uganda runs projects relating to non-formal education. This is important because many children cannot go to school for a number of reasons. For example, there may be no primary school nearby home or there is a risk of violence on the way to/back from school. Save the Children focuses on the first three levels of education (P1 to P3) and hands over to Government from P4 level onwards. Neither an IE approach has been taken nor has any specific activity targeting CwDs going to school been implemented or included as part of this Save the Children project. However, some feedback has been received during the implementation. Teachers do not feel trained to include and teach CwDs. The attitudes of parents, communities, teachers and head masters play a vital role in including CwDs in school.

159

Engh, Ida-Eline, Norwegian Agency for Development Cooperation (NORAD), Interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda On the basis of this incidental feedback, Save the Children has recently started to take into consideration the perspective of CwDs. The organisation partnered with USDC to present the situation of pupils and students with disabilities in one of the weekly poll out sessions about education run by Save the Children. USDC and Save the Children are also discussing the signature of a MoU between both organisations. This strategic partnership would include a review of the Save the Children strategic planning within a disability framework, the organisation of a disability capacity building and awareness raising programme for the staff at national and field offices by USDC and the establishment of a partnership with local communities with whom both Save the Children and USDC work. 160

4.7.

War Child

War Child Holland “empowers children and young people in conflict areas by providing psychosocial support, stimulating education and protecting children from violence”161. In Uganda, War Child Holland has run the Sports for Social Inclusion project in 2010 and, recently decided to mainstream the perspective of deaf children into its psychosocial programmes.

4.8.

World Vision

World Vision is a “Christian humanitarian organisation dedicated to working with children, families, and their communities worldwide to reach their full potential by tackling the root causes of poverty and injustice.” The organisation is present in thirty-eight Districts and operates fifty-three Area Development Programmes across Uganda. World Vision mainstreams disability in all its programmes and leads small-scale disability specific projects targeting CwDs - supporting access for CwDs in Gulu to water and sanitation (WASH) and classrooms 162 and distributing wheelchairs to CwDs in Kabale.

5. Conclusions on the Mapping of Programmes In the course of this Study, forty-six ongoing or completed programmes have been identified. Two-thirds of them address access to education, health and (re)habilitation services for CwDs, while the remaining third focus on areas such as sport, the needs of girls with disabilities or the empowerment and promotion of the rights of CwDs. Very few organisations mainstream the perspective of CwDs in their programmes and even fewer projects address the building of the capacity of Ugandan organisation representing CwDs or parents of CwDs. Although some of the programmes are run across Uganda, most of them have very limited areas of coverage – for example one or two Districts. Many of them operate in the most deprived areas of Uganda in the Northern and Eastern regions.

160 161 162

Bakundana, Flavia, Heijnen-Maathuis, Els, Save the Children, Interviewed by Nadège Riche, 2013.

War Child Holland, http://www.warchildholland.org/, 2014, (Accessed 5 February 2014).

Ojok, Simon, Gulu Disabled People Union (GDPU), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The programmes deliver tangible outcomes that impact on the lives of some CwDs living in Uganda. So, for example, some CwDs will benefit from an outreach surgical operation and have improved mobility or an NGO will build accessible classrooms and toilets and improve access to school. These activities can definitely change the life course of a CwD. However, most of these projects are small-scale and lack long term sustainability over time. By their very nature these programmes do not address the need for a structural change that would make a profound impact on the lives of CwDs in Uganda.

These programmes are funded by two types of donor organisations. The Danish, Norwegian and American development agencies have engaged with the disability movement in Uganda for the past ten to twenty years and about ten foundations and NGOs based in the UK, the Netherlands, Italy, Liechtenstein, Norway and the US have carried out or are still conducting smaller-scaled activities targeting CwDs living in Uganda.

The Ugandan Disability Movement is vibrant and DPOs are relatively well structured and representative of all categories of PwDs with some visible successes of their advocacy work.

For example, NUDIPU successfully advocated for five Members of Parliament who now represent PwDs. However, CwDs living in Uganda are not properly represented: NUDIPU and NUWODU implement projects partly covering their specific needs and rights, but mostly focus on young persons and adults with disabilities. USDC is the only organisation advocating for the needs of CwDs, but is an organisation of adults speaking on the behalf of the CwDs. UPPID supports parents of CwDs but their aim is to mobilise parents of children with intellectual disabilities. There is clearly a gap in the representation of CwDs in the Uganda Disability Movement.

Finally, some iNGOs whose focus is on children rights, such as Plan, Save the Children and War Child, have mainstreamed to some extent the needs and rights of CwDs in their own programmes or implemented specific projects relating to CwDs. The impact of the mainstreaming approach is however difficult to assess at this stage and this appears to be a rather recent trend to include the perspective of CwDs.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Part 6: The Disability Situational Analysis 1. The Situation of the Rights of Children with Disabilities Living in Uganda as Reflected by the Statistics, Laws and Policies This section explores the current situation for the realisation of the rights of CwDs in Uganda. The assessment draws upon a review of available statistical information highlighting their inherent limitations. The analysis of the laws and policies reveals the extent to which Uganda has domesticated the CRC and CRPD provisions.

1.1.

Available Statistical Information Relating to Children with Disabilities Living in Uganda Statistical information relating to CwDs living in Uganda is in general unreliable and therefore gives an incomplete picture of the actual reality. Most statistics are unreliable for numerous reasons. So, for example, there are the various definitions of disability used with an ongoing move away from a medical to a social and rights-based model of disability.

Differing individual and cultural perceptions of what functional limitations and disabilities imply lead to over- or under-estimation of child disability prevalence. The design of data collection tools and the wording and number of questions relating to disability included in the different survey questionnaires also affect the quantity and quality of the collected information. The stigmatisation of disability also negatively affects the value placed upon and resources that are allocated to disability statistics. Because of this, surveys exclude a significant number of persons and children with disabilities. This is, however, a global concern and not only true of Uganda.

Based on the available data, child disability prevalence is about 13% or 2.5 million children living with some form of disability in Uganda. The available data indicates no gender discrepancy: there is an equivalent number of boys and girls with disabilities in Uganda. The enrolment rate of CwDs in pre-primary, primary and secondary school is very low: about 9% of CwDs attend school and only 6% of this complete primary school and continue studying in secondary school. Boys and girls with disabilities seem to have similar enrolment rate at all educational levels. The overall numbers of CwDs and enrolment rates are in line with the worldwide and Sub-Saharan trends elaborated by the various UN agencies.

Aside from the child disability prevalence and access to primary and secondary education, sources of statistical information relating to other areas of the everyday life of CwDs in Uganda are scarce.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda In Uganda, the major onset of disability among children is by illness 163. The second cause of disability is congenital or acquired around birth. The remaining reasons, which are given, are accidents and curse from God (or similar) 164.

Although the understanding of the causes of disability has improved, CwDs are still referred to as “invisible” children. They are often kept at home, hidden from society by their families and most of them are not registered at birth or death. However this situation appears to be improving and in the ACPF study almost half of the 540 CwDs seem to have been registered165.

Access to health and (re)habilitation is the first practical step in enabling CwDs to move around, go to school and participate in social life. USDC considers that only 10% of CwDs living in Uganda actually benefit from (re)habilitation services 166. Most carers of CwDs reported that they have access to health care services and around 20% of CwDs have access to (re)habilitation services. The vast majority of these services are provided by the Government followed by NGOs167.

Conclusively, this statistical information must be handled with caution due to their partial unreliability. There are also significant gaps in statistics relating to CwDs living in Uganda: data is either not gathered at all (e.g. CwDs and humanitarian actions) or sometimes collected but not analysed adequately leading to gaps in information (e.g. disaggregation by gender or types of disability). This lack of relevant and appropriate information significantly affects the planning and delivery of programmes, the development of strong policy formulation and the delivery of vital services targeting CwDs living in Uganda.

1.2.

The Rights of Children with Disabilities According to the Ugandan Legal and Policy Framework This section presents an analysis of how the Ugandan regulatory framework has domesticated the CRC and CRPD provisions by selected areas of rights of CwDs. Overall the laws and policies establishing the rights of PwDs and the rights of children pay limited attention to the specific needs and rights of CwDs. Besides, the Ugandan regulatory framework is also unclear with regard to the responsibility of duty bearers that must guarantee the recognised rights of CwDs. There are no legal or policy provisions designating the role of the duty bearers in the realisation of the rights of CwDs in Uganda. For instance, Section 9 on CwDs of the Children Act is imprecise and “it places the obligation of early assessment, appropriate treatment, (re)habilitation and equal opportunities upon both parents of CwDs and the state without clarifying who is actually

163

Uganda Bureau of Statistics (UBOS), Uganda Population and Housing Census / Analytical Report on Gender and Special Interest Groups 2002, 2002 164 Africa Child Policy Forum (ACPF), Children with Disabilities in Uganda: A Hidden Reality, 2011.

165

Africa Child Policy Forum (ACPF), Children with Disabilities in Uganda: A Hidden Reality, 2011.

Network on Disabled Children, Uganda Society for Disabled Children (USDC), The State of Abuse, Protection and Promotion of Rights of Children with Disabilities in Uganda, 2011.

166

167

Africa Child Policy Forum (ACPF), Children with Disabilities in Uganda: A Hidden Reality, 2011.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda responsible.”168 This hinders accountability of the duty bearers and ultimately hampers the drafting and implementation of measures that will support the realisation of the rights of CwDs in Uganda.

1.2.1.

Definition of a Child with a Disability

The Ugandan legal and policy framework defines a child with a disability as a person below eighteen years “with a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environment barriers resulting in limited participation” (PwDs Act, Part 1, Section 1). In the educational context, learners with disabilities are persons with: “i) Intellectual Impairments, ii) Specific Learning Difficulties, iii) Hearing Impairment, iv) Visual Impairment, v) Physical Impairments, vi) Health Impairments, vii) Speech and Language Disorders, viii) Social, Emotional and Behavioural Difficulties /Disorders, and those who are; Gifted and Talented, ix) Left handedness and x) Multiple disability (a combination of two or more impairments)” (Draft Policy in SN&IE, Section 3 (4)).

A comparison between the definitions of disability as contained in the CRPD (Preamble, (e)) and in the PwDs Act shows that the latter is not in accordance with Article 1 and does not fully reflect the definition as used in the CRPD. The Ugandan legislation defines disability in terms of a limitation in function and puts the emphasis on the person with a disability.

Although the role of environmental barriers is recognised, disability remains primarily defined by the impairments of the person or of the child. There is no recognition of the role of attitudinal barriers and there is no measure or definition of what constitutes a substantial functional limitation. Uganda is therefore yet to fully adopt a rights-based social model of disability.

In addition, there is a lack of any clear and consistent definition of disability in the Ugandan regulatory framework- the definitions of disability vary between the laws and policies establishing the rights of PwDs and the rights of children respectively, or those relating to education. This can lead to the exclusion of some categories of persons and children with disabilities from benefiting from equal opportunities measures or accessing services, especially the albinos, little people or persons with psychosocial or intellectual disabilities.

For example, the CRPD would recognise albinism as a disability due to the concept of attitudinal barriers, thus granting recognition of impairments outside of the medical diagnosis. The Ugandan regulatory framework would allow protective measures and possibilities for inclusion (Constitution, Article 31; PwDs Act, Sections 6 and 25 on the prohibition of discrimination in respectively accessing education and goods, facilities and services). However, the challenge which poses the greatest barrier to persons with albinism gaining recognition and support is exactly the issue of definition and this ambiguity has not been addressed within the Ugandan framework 169.

168

National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010, p. 37.

169

Office of the United Nations High Commissioner for Human Rights, Persons with Albinism Report, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda This clear and consistent definition of disability should be social and rights based in line with the CRPD. This could also include a measure and definition of functional limitations by, for instance, referring to the WHO ICF.

1.2.2.

Non-Discrimination and Equal Opportunities

Provisions on anti-discrimination and promotion of equal opportunities lack clarity and consistency among the Ugandan regulatory framework. Non-discrimination on the ground of disability is defined in Article 21 of the Constitution of Uganda. This is translated into a legal provision as a general objective in the PwDs Act, whereas the Children Act fails to provide a clear provision on anti-discrimination to protect CwDs. Similarly, the Constitution of Uganda recognises equal opportunities for PwDs, which includes CwDs, to address the imbalances and inequalities they face in life (Article 32).

Although the PwDs Act promotes affirmative action for PwDs (Section 33), the National Disability Policy does not state how to realise this right thus making it difficult to implement in practice.

Additionally, “the Children Act does not expressly recognise that CwDs enjoy all the rights guaranteed by this particular law"170. The Act highlights the different rights of children that should be promoted and realised to aim at children’s welfare. These rights include right to education, immunisation, adequate diet, clothing, shelter and medical care. It also calls for protection of children against violence and abuse by those who take care of them. However, the Act does not contain any “express recognition that the [above-mentioned] rights guaranteed by the Act apply to all children regardless of their status” 171. In other words, CwDs are not explicitly recognized as right holders of these rights as any other children would. Section 9 is indeed the only specific article that deals with CwDs in this legislation and it only refers to assessment, treatment, (re)habilitation and education of CwDs. It cannot be considered as a general non-discrimination clause.

1.2.3.

Rights to Life, Health Services and (Re)Habilitation

This section analyses how the existing Ugandan laws and policies promote and protect the right to life, access to health services and (re)habilitation of CwDs. The regulatory framework relating to the rights to life, health services and (re)habilitation consist of the Constitution of Uganda of 1995, the NDP of 2010, the PwDs Act of 2006, the National Policy on Disability of 2006, the Children Act of 1996, the National OVC Policy of 2004 and the NHP II of 2010.

These laws and policies promote and protect the rights of CwDs as follows: Article 22 (2) of the Constitution of Uganda recognises the right to life to any person and this provision also applies to unborn CwDs. However, the issue of right to life of unborn CwDs and the termination of pregnancy on medical grounds have not been addressed further in any Ugandan laws or policies.

170

National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010, p. 37.

171

Office of the High Commissioner for Human Rights (OHCHR), Working Paper – A Review of the Ugandan Legal Framework Relevant to Persons with Disabilities - Comparative Analysis to the Convention on the Rights of Persons with Disabilities, August 2008, p. 7.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Some policies assess the current situation and barriers faced by PwDs in accessing (re)habilitation and health services, although there is no specific mention of CwDs’ needs, especially of those of girls with disabilities. The NDP identifies the lack of orthopaedic workshops and of affordable assistive devices as two of the main problems and calls upon Government and stakeholders to address these challenges (Section on the social sector and education subsector). Unfriendly and inaccessible health infrastructures, negative attitudes of hospital and health centre staff towards PwDs are also identified as some of the challenges (National Policy on Disability, Section 1 (4) (8); and NHP II, Section 2 (8) (2)).

To address these barriers, the right to equal access to health services by PwDs and CwDs is reiterated (PwDs Act, Section 7; National OVC Policy, Section 5; and NHP II, Section 6 (1)).

The measures, which need to be taken to deliver these services to persons and children with disabilities, are described in several laws and policies. The Children Act provides for assessment and (re)habilitation of CwDs (Section 9). The PwDs Act identifies several measures: provision of accessible medical information, integration of SL training in the health professional curriculum and specific training in the needs of PwDs, and the provision of specific sexual and reproductive health services to women and girls with disabilities to keep them alive (Section 7). However, the realisation of these services has so far not been realised due to inadequate resource allocation.

Furthermore, the legal framework in Uganda does not recognize habilitation as provided under the CRPD. The focus is to help PwDs to regain functional ability. This is not in line with the spirit of Article 26 which focuses on habilitation and rehabilitation. Although CBR is elaborated under the PwDs Act, the law assigns the ministry responsible for disability affairs, the MoGLSD, the duty to set up, equip and maintain vocational training institutions for PwDs. This is in contradiction to Article 24 of the CRPD which stipulates an inclusive education system at all levels, lifelong learning and reasonable accommodation of the individual’s requirements.

1.2.4.

Right to -Inclusive- Education

This section analyses how the existing Ugandan legal and policy framework promotes and protects the right to education of CwDs. The regulatory framework relating to the right to education consist of the Constitution of Uganda of 1995, the NDP of 2010, the Education (Pre-Primary, Primary and Post-Primary) Act of 2008, the UNISE Act of 1995 amended by the University and Other Tertiary Institutions Act of 2001, the draft SN&IE Policy, the draft NonFormal Educational Policy for Educationally Disadvantaged Children, the PwDs Act of 2006, the National Policy on Disability of 2006, the Children Act of 1996 and the National OVC Policy of 2004. These laws and policies promote and protect the rights of CwDs as follows: The 1995 Constitution of Uganda provides for the constitutional right to education for all (Article 30) and the equalisation of opportunities for all disadvantaged groups, including CwDs (Article 32). The PwDs Act, 2006, specifically outlines the legal provision of access to education for persons and children with disabilities (Sections 5 and 6) and calls for not less than 10% of the education budget to be allocated to the education needs of CwDs. This right to education is directly or indirectly reiterated in several laws and policies (Education Act, Schedule 1, part I and II, section 4 (2) and (3); National Policy on Disability, Section 1 (4); and National OVC Policy, Section 5)). The provisions for SNE and IE are described in the draft SN&IE Policy and draft Non-Formal Education Policy for Educationally Disadvantaged Children (Section 1 (1), (2) and (3)).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Specific barriers and challenges, which restrict access to education for CwDs, are identified and measures to overcome them outlined. The first barrier to be identified is the inaccessibility of education buildings, including latrines, toilets and classrooms, for CwDs (NDP, Section on the social sector and education subsector; PwDs Act, Sections 12 and 20; and Draft SN&IE Policy, Section 2 (4)).

The second challenge consists of the lack of alternative formats of the educational curriculum and of accessible scholastic material (Draft Non-Formal Education Policy for Educationally Disadvantaged Children, Section 2 (2); NDP, Section on the social sector and education subsector; Draft SN&IE Policy, Sections 2 (4) and 5 (7)). It is the responsibility of the Faculty of Special Needs and Rehabilitation of the Kyambogo University to address these specific needs of pupils and student with disabilities as well as to provide assistive devices and train teachers in SN&IE (UNISE Act, Section 5 (d)).

The final challenge identified in these laws and policies is the lack of SN&IE trained teachers.

It is therefore planned to include a SN&IE training module in the teacher training curriculum and specific SN&IE training for teachers to enable them to teach all children including CwDs in mainstream schools (PwDs Act, Section 5; draft SN&IE Policy, Section 2 (3); NDP, Section on social sector and education subsector; and UNISE Act, Section 4 and 5 (a) and (g)).

Although IE is encouraged, at the same time the establishment of special schools and units is included where IE is not possible. The greatest omission within the PwDs Act is the failure to provide clear provisions on reasonable accommodation for the individual requirements of CwDs as required under CRPD Article 24 (2) (c). This stands in contradiction to the Convention and the promotion of an IE policy.

In addition, it is worth highlighting that the current laws and policies tend to bring confusion between IE and SNE. “Although the government is committed to the principle of IE as evidenced by the ratification of the [CRPD] and the adoption of a Universal Primary Education Policy in 1996, it has authorised the construction of twenty-four special schools.

The educational legal framework is confusing and ambiguous as it mentions both IE and SNE. For example, under Section 5 of the PwDs Act, IE is encouraged although at the same time the establishment of special schools and units is included where IE is not possible.” 172 So, what Uganda has in effect, is what can be called a twin track approach to IE and SNE. The Government of Uganda recognised it: “while embracing the need to provide for IE at all levels, [Uganda] still promotes the twin track approach by providing for both special schools and IE, in promotion of the right of PwDs to education where special schools might still be required for learners with confounding disability.”173 Given that the mainstream educational system is currently inefficient, and taking a pragmatic approach, several Ugandan DPOs continue to advocate for the building of special schools. This is because it is believed that, in the current system, CwDs will receive a far better education, and stand a far greater likelihood of securing long-term employment if they receive education in special schools. “A survey in Uganda found that disability groups and parents favoured this approach partly out of concern about overcrowding and poor

172

National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010.

173 Government of Uganda, United Nations Convention on the Rights of Persons with Disabilities Uganda’s Initial Status Report 2010, 2010.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda resourcing in standard schools.”174 This has resulted in a confusing legal and policy framework to realise IE for CwDs, despite the clear call for IE in CRPD Article 24.

1.2.5.

Right to Recreational Activities, Leisure and Sport

This section analyses how the existing Ugandan legal and policy framework promotes and protects the right to cultural and recreational activities, leisure and sport for CwDs. It consists of the PwDs Act, 2006, and of the Children Act, 1996. Overall the legal provisions and supply of recreational activities to CwDs are under developed in Uganda 175.

In both Acts, the article relating to the rights to leisure, play and participation in cultural and artistic activities is limited to the recognition of these rights to the targeted population. The Children Act does not provide any guidance on how these rights should be implemented.

The PwDs Act is slightly more elaborated: it refers to the enactment of “appropriate measures to participate in mainstream sporting activities” and […] of the need for adequate support (meaning “instructions, training and resources”) (Section 30). However, there are no specific clauses identifying CwDs’ as holding the right to play. They are indirectly covered by the PwDs and Children Acts respectively targeting PwDs and children.

In practice, the MoES through the National Council of Sports organises annual sports competitions for children with visual impairments in primary schools. However the Ministry has never considered promoting sport for other disability groups 176. This is also separate games for PwDs thereby reinforcing segregation and limiting inclusion in the broader world of sports.

1.2.6.

Protection from Exploitation, Violence and Abuse

This section analyses how the Children Act, 1996, the National OVC Policy, 2004, and the Child Labour Policy, 2006, form the child protection legal framework defining the rights of CwDs to be protected from all forms of exploitation, violence and abuse. These laws and policies aim to create an environment where CwDs can live safely and fulfil their maximum potential.

The Children Act is the main legislation that instrumentalises Article 34 of the 1995 Constitution of Uganda which calls for the enactment of legal provisions promoting and protecting the rights of all children. The overall aim of the Children Act is to lay out the measures that must be put in place to ensure the welfare of all children, including CwDs. Both the National OVC Policy and the Child Labour Policy mention CwDs as one of their target groups, among other categories of vulnerable children. There is however no specific article highlighting the situation of CwDs and the measures that should be taken. The overall purpose of both policies is to protect them from abuse and violence (National OVC Policy, Section 5) and to eliminate CwDs’ labour in communities (Child Labour Policy, Section 10).

174

Department for International Development of the United-Kingdom (DFID), Disability Scooping Study, Final Report, February 2009.

175

Uganda Child Rights NGO Network (UCRNN), NGO Complementary Report to the Government of Uganda First Period Report on the Convention on the Rights of Children, 2000, p. 46.

176 Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The main omission of this limited CwDs protection mechanism is the lack of identification of the responsibility of duty bearers to report breaches of these rights. Caregivers of CwDs, who are the primary resource person of the child, should be granted with the responsibility to report any breaches, especially sexual abuses on girls with disabilities such as defilement and rapes 177.

In that respect, there seem to be several parallel processes going on in the Parliament of Uganda in relation to sexual offenses but to date no legislation has been adopted. “In 2000, the Government of Uganda introduced the ‘Sexual Offences (Miscellaneous Amendments) Bill’. The Bill sought to amend the provisions of various enactments on sexual offenses, procedural and evidential requirements during the trial of sexual offenses and for other related matters. In 2012, the Uganda Women’s Parliamentary Association (UWOPA) begun a similar process in the form of the ‘Sexual Offenses Bill’, the Bill has several objectives including – consolidating laws relating to sexual offenses, combating sexual violence, providing for punishment of perpetrators of sexual offenses, providing for procedural and evidential requirements during trial of sexual offenses and other related matters. This Bill also aims to protect PwDs, including CwDs, from being sexually harassed or abused and raped. MPs are now considering the certificate of financial implications before taking it any further. As a parallel initiative UWOPA was also in supporting amendment of the Evidence Act to address some evidential constraints for sexual offenses related cases.” 178

1.3.

Main Conclusions about the Situation of the Rights of Children with Disabilities Living in Uganda as Reflected by the Statistics, Laws and Policies The assessment of the state of CwDs’ rights in Uganda based on a review of the available statistical information and an analysis of the regulatory framework reveals an incomplete understanding of their situation.

Data relating to CwDs are scarce and to some extent unreliable. Based on estimations, the child disability prevalence is about 13% or 2.5 million children living with some form of disability in Uganda. The enrolment rate of CwDs in pre-primary, primary and secondary school is very low: about 9% of CwDs attend school and only 6% of these complete primary school and continue studying in secondary school. Boys and girls with disabilities seem to have a similar enrolment rate over all educational levels. Significant gaps in information are evident in the lack of disaggregation of statistics by gender and types of disability and the non-existence of national and accurate data in other areas of the life of CwDs other than education.

The analysis of the regulatory framework shows that Uganda has broadly domesticated the rights of CwDs enshrined in both the CRC and CRPD. The provisions are recognised in the Constitution of 1995 and in most of the laws and policies establishing the rights of PwDs and children. No specific legislation has been adopted on the rights of CwDs and they are rather

177

National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010, p. 18.

178 National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda mainstreamed in other legislation, which is in line with the approach taken by the Conventions. Although CwDs’ rights are acknowledged, some of the provisions to realise them are not in line with the CRC and CRPD requirements. The most striking example is the right to IE stated by CRPD Article 24. Recent or about to be adopted Ugandan laws and policies identify IE as a possible way forward but continue to actively promote SNE and the establishment of special schools. Another major challenge is the lack of any clear measures as to how to realise these stated rights. To conclude, the rights of CwDs are well recognised by the Uganda regulatory framework but the measures to realise them are contrary to the international conventions, if specified at all. The unclear provisions relating to the responsibility of duty bearers (Children Act, Section 9) also hamper the implementation of measures that would support the realisation of CwDs’ rights in Uganda.

2. Identification of Barriers and Bottlenecks Preventing the Full Realisation of the Rights of Children with Disabilitiess in Uganda This section analyses the many barriers that impede CwDs from accessing their rights and the bottlenecks that hinder those organisations responsible for promoting and protecting them.

2.1.

Social Norms of Disability Leading to Discrimination

Throughout the course of the research study, one of the clearest findings was the ongoing presence of stigmatising attitudes to reject, neglect, abuse and marginalises persons and children with disabilities. Traditionally behaviours towards CwDs have been negative and “parents continue to see the birth of a CwD as a great misfortune”179. For example, it was reported that a father of a child with Cerebral Palsy explained to people that “his wife produced a CwD”, meaning his wife was deemed responsible for the birth of a CwD. These stigmatising and negative attitudes targeting CwDs can be the cause of very difficult situations. For example, CwDs are sometimes hidden away or if a mother gives birth to a CwD, the father may run away. CwDs are very often marginalised in their families and communities.180 This situation has been recently researched and illustrated by several organisations.

HumaneAfrica recently published a report confirming that “CwDs are subjected to violence, abandonment, neglect, and in some cases, death. They are often hidden away from public view inside their houses, which excludes them completely from society. […] Interviews with children, families, schools and institutions confirmed that CwDs in Uganda often are excluded and experience discrimination.” 181 NUDIPU also demonstrated how girls (and women) with disabilities experience multiple discrimination based on their gender and

179

AbleChildAfrica, http://ablechildafrica.org/resource/, 2013, (Accessed on 15 November 2013).

Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

181 HumaneAfrica, Attitudes and Behaviours towards Children with Disabilities in Uganda, Review of literature and field research conducted in October 2013, 2014.

180

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda disability: “parents of CwDs still have a belief that they have demons with them and give them much protection that they cannot contract marriages. Further that these parents believe their children of marriageable age cannot be mothers in their new homes and would be mistreated by their husbands”182. On another note, the ACPF describes a more balanced situation in its report on the situation of CwDs in Uganda. CwDs still face bad treatments and negative attitudes in their household or communities. For example, a minority is always excluded from family or religious events because of their impairments. However, “changes in societal attitudes towards CwDs [have also been noticed and] are gradually improving and becoming more supportive: a very large majority of CwDs reported that they get emotional support from their families and help in conducting everyday tasks that they have difficulties in performing.”183 Although the stigmatising attitudes to reject, neglect, abuse and marginalisation of persons and children with disabilities in Uganda shall not be underestimated, more positive attitudes have been noticed and may be considered as a prelude to social changes.

As part of this research, it has also been established that parents or guardians lack the basic skills to take care, educate and support their CwDs: “Parents of CwDs do not know what to do with them”184 First, they have low parenting skills relating to the needs and rights of CwDs. They do not have the knowledge to identify at an early stage whether their child has a disability, or not.

This would however be crucial because the earlier an impairment is assessed, the better one will be taken care of and get answers to one’s needs. Parents have also little information of support mechanisms and availability of assistive devices and technologies, although these would greatly assist them in taking care of their children. As a result of these low parenting skills, CwDs “are under cared for and considered last at home.”185 For example, “many CwDs lack proper nutrition because they eat last” 186. Similarly, “parents deny education to their CwDs because they did not see the purpose, thinking that such children cannot be able to perform in life anyway.”187 Additionally, parents and guardians give value to the beliefs and attitudes of their community. It appears that their behaviours are largely influenced by what relatives, neighbours and/or teachers, among others, think of persons and children with disabilities.

“Even if the parents love and care for their CwD, the biggest challenge for them can be the negative attitudes and stigmatisation of their children by the community. Communities are sorry about the situation but do not actively encourage CwDs to do things themselves.” 188 Some parents of CwDs do not even want to be seen with their child.

182

National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010, p. 24.

183

Africa Child Policy Forum (ACPF), Children with Disabilities in Uganda: A Hidden Reality, 2011, p. 37.

Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

185 Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

184

186

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

Uganda Bureau of Statistics (UBOS), Report of the National Service Delivery Survey (NSDS), 2008.

188 Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

187

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda To conclude, this research has unveiled a pattern of behaviours based on misconceptions and stigmatisation that are associated with disability. These attitudes are dependent on what communities traditionally think of persons and children with disabilities. Facing this, parents and guardians of CwDs also seem to prefer conform to what their communities expect them to act like. However, such a statement would further research to be fully evidenced-based. Likewise, these negative attitudes and behaviours towards CwDs, and PwDs in general, are not only practised by communities and families, but also by Government Institutions, international bodies, NGOs and DPOS themselves. This is, however, a global concern and it is not only true of Uganda.

Conclusively, it can be resonnably extrapolated that social norms189 relating to disability are widely disseminated in the Ugandan society. This situation leads to discrimination towards persons and children with disabilities. Changing them would therefore require the collective and individual efforts of all stakeholders to promote and protect the rights of CwDs. The “huge shift in all of our attitudes [implies] a total rethink of our approach to ability and inclusion. Addressing the attitudes of parents and everyone else in communities will be of critical importance if the rights of children and young PwDs are to be realised.”190

2.2.

A Serious Gap in Implementation of the Ugandan Regulatory Framework The policy gaps analysis reveals that the Ugandan regulatory framework broadly domesticates the CRPD and CRC. Through constitutional, legal and policy provisions, it challenges discrimination based on the grounds of disability, promotes affirmative action and equal opportunities and contains provisions to deliver access to education, (re)habilitation, health services, leisure and sport to CwDs. Overall, the rights of CwDs are well recognised by the Uganda regulatory framework (although some of these measures to realise them are contrary to international conventions, if specified at all 191).

But, it remains the case that the country faces substantial challenges in implementing effective and efficient disability policies and services. In short, there is a significant implementation gap192 and in reality these laws and policies are honoured in the breach.

This appears to be a long-standing and systemic issue raised in the course of various sessions of the UN monitoring mechanisms relating to human rights. In 2005, State Parties to the CRC reviewed the situation of children rights in Uganda and recommended that, “to prevent and prohibit all forms of discrimination against CwDs and ensure that they have equal opportunities to participate fully in all spheres of life, [Uganda] implements the domestic

189

Mackie, Gerry, and Moneti, Francesca (ed.), Working Paper: What are Social Norms? How are they Measured?, United Nations Children’s Fund (UNICEF) – University of California San Diego (UCSD) Center on Global Justice Project Cooperation Agreement, 2012.

190 191 192

AbleChildAfrica, http://ablechildafrica.org/resource/, 2013, (Accessed on 15 November 2013).

Refer to Part 6 / Section 1(2) of this Report for a detailed analysis of the Ugandan regulatory framework.

The vast majority interviewees have underlined the gap in implementation of laws and policies in Uganda.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda laws […] including disability aspects in all relevant policy-making and national planning”193.

Similarly, in 2011, Uganda went through its Universal Periodic Review. Comparable recommendations were given by the State Parties: Hungary encouraged Uganda to “implement the steps envisaged in the promotion of rights of PwDs, with a special emphasis on equal opportunities for CwDs” and Spain incited Uganda to adopt “measures to guarantee the rights of PwDs, in particular, to fight against all forms of discrimination faced by women with disabilities, and regarding the lack of equal opportunities for minors with disabilities, with a particular attention to albino children.”194 In the framework of this research study, several reasons explaining this implementation gap were identified.

One of the immediate explanations lies in “the fact that, [in Uganda,] the processes of policy formulation and implementation are totally divorced from each other.”195 Most of the laws and policies set ambitious goals which are difficult to put in place afterwards: for example, it is required to make ALL public buildings accessible to PwDs without taking into account the concept of progressive realisation196. This lack of proper enforcement is also due to the lack of clear regulations, by-laws and ordinances. Some legislation requires the passing of interpretation guidelines because they are technical in nature, accessibility of the physical environment illustrating well this idea again. 197 This situation is reinforced by the lack of know-how of legislation implementers and of their significance for PwDs. So for example, despite the fact that the PwDs Act was adopted in 2006, to date there are no regulations passed for its implementation. Provisions, such as the ones on CwDs in the Children Act or OVC policy, seem to stay on paper. Furthermore, Uganda has not established an effective monitoring and complaints mechanisms that would enforce and protect the rights of CwDs. This is explained in details in the next section relating to the institutional framework.

Another striking explanation of this implementation gap is the lack of financial resources and budget allocation to implement provisions targeting CwDs. The vast majority of laws and policies relating to persons and children with disabilities are adopted in Parliament without a certificate of financing. Without proper funding, no laws or policies can be implemented 198.

This is further compounded by limited budget allocations to local Government Institutions in charge of the promotion and protection of the rights of CwDs199. The allocation of financial resources is made at the national level and, since this is not properly made, local governments are left without the resources for the implementation of these laws and

193

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 9.

194 United Nations (UN) General Assembly, Human Rights Council, Report of the Working Group on Universal Periodic Review Uganda, 2011, p. 16.

195 Department for International Development of the United-Kingdom (DFID), Disability Scooping Study, Final Report, February 2009, p. 7.

196 Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

197 198 199

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

Okwera, Albert, Gulu District Council for Disability, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda policies 200. So for example, the PwDs Act, 2006, requires that 10% of all educational expenditures are allocated to the needs of persons and children with disabilities (Part II, Section 5). In practice, this has never happened. This leads to a situation where the MoES through its Special Needs department distributes Braille papers, Perkins braillers and brailled text books to special units, these materials remains however insufficient to meet the needs of all schools in the country. This lack of financial resources is true of the child sector in general. In 2005, State Parties to the CRC already “urged [Uganda] to prioritize and increase budgetary allocations for children at both national and local levels, and in particular to pay attention to the protection of the rights of children belonging to vulnerable groups, including CwDs”201.

Finally, a direct result of these limited budgets is the lack of trained staff working with CwDs in local and national Government Institutions, hospitals and schools. These people ultimately put in pratice the content of these laws and policies. Districts, sub-counties, parishes and villages have administrative positions in charge of the welfare, education and access to health services and (re)habilitation for CwDs. But, due to shortage of financial resources, no one is appointed. In this regard, the situation of the Gulu District is quite representative. As any other districts, Gulu has a sector in charge of SNE but no officer has been employed.

Many programmes are designed without consulting PwDs or their representative organisations because it is considered too expensive, which is one of the reasons for their failure. The Gulu Disability Council has no facilities and no budget. The structure is also not established at sub-county level due to lack of funding 202. In the health and (re)habilitation sector, the lack of staff is also obvious. There is only one physiotherapist per District Hospital and they must support PwDs, CwDs and older people for the whole District. They have heavy workloads and cannot see those people in need of health and (re)habilitation services. This is even more critical as some CwDs need only one intervention (e.g. a child with club feet), while others require an on-going assessment of their needs (e.g. a child with CP) and this does not happen because of the reasons mentioned above. Many physiotherapists and occupational therapists also prefer to practice privately and in towns where there is more business203. Similarly, the education sector lacks SN&IE trained “mainstream” teachers and teachers assisting CwDs in specific class (e.g. learning Braille note taking). Due to the overall limited number of teachers, head masters also tend to post SN&IE teachers in “mainstream class”, whose skills are thus underused 204.

To conclude, Uganda faces a significant gap in the implementation of the existing laws and policies relating to CwDs. This is due to several reasons such as the lack of supporting implementing acts as well as of limited financial and human resources. Another major barrier to the enforcement of legislation is the lack of coordination between key stakeholders and duty bearers.

200

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 4.

201

202 203 204

Adong, Caroline, National Council for Disability (NCD), Interviewed by Nadège Riche, 2013.

Bongole, Rose, Ministry of Health (MoH), Interviewed by Nadège Riche, 2014.

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

2.3.

An Institutional Framework Weakened by Lack of Coordination and Limited Knowledge and Capacities of Key Stakeholders The institutional analysis indicates two main bottlenecks hindering the full realisation of the rights of CwDs in Uganda: a lack of coordination among key stakeholders and duty bearers as well as a gap in knowledge and capacities of those to engage with CwDs. The institutional framework to promote and protect the rights of CwDs has been established through various laws205. At ministry level, the MoGLSD has been appointed as the lead Ministry for disability affairs, while all other Ministries, especially the MoES and MoH, are responsible for matters relating to CwDs within their respective mandates. It implies that the MoGLSD has “the mandate to promote and protect the rights of PwDs and to provide technical assistance to other sectors in disability mainstreaming” 206. However, the MoGLSD has not been granted powers to influence other Ministries running interventions targeting CwDs. This results into uncoordinated work between Government Ministries and, in this respect, the activities relating to data collection are a good example. The MoGLSD, MoES and MoH implement policies and programmes directly affecting the lives of CwDs. They can collect administrative data in terms of the number of CwDs served by public services such as CBR Programmes, educational and vocational services and health services. This data could be used to estimate the numbers and needs of CwDs served by the public administration of the country. While both the MoGLSD and MoES already have Management Information Systems (MIS) in place, the MoH has not reported using any MIS207.

In the framework of the CBR programme, the MoGLSD uses the Uganda CBR MIS (CBR MIS).

However, this system suffers from two main limitations: it is based on data gathered at the local government level (data that mostly is not available) and it is only operated in the Districts covered by the CBR programmes. This would suggest that the MoGLSD has not been able to produce any figures using the CBR MIS at this stage. In addition, the MoGLSD with support from Handicap International designed and tested the Data Collection Tool on Disability in 2012/13. Section F covers the education of CwDs and has questions about the types of schools CwDs attend (i.e. inclusive/mainstream, special school or integrated unit) and about the reasons for not going to school (i.e. distance, inaccessibility of classrooms or latrines, lack of school fees, bullying, bad attitudes by teachers, lack of appropriate scholastic material, negative attitudes by parents). Due to a lack of funding, the MoGLSD has not been able to use this tool on a larger scale and produce data for Uganda.

205

For an in-depth presentation of the institutional framework, refer to the United Nations Children’s Fund (UNICEF) Uganda, Research Study on Children with Disabilities Living in Uganda, Intermediary Report Summary and Analysis of Policies and Mapping of Programmes, 2014.

206 Ministry of Gender, Labour and Social Development, Terms of references for the National Steering Committee on Disability, 2013.

207

Rose Bongole, Ministry of Health (MoH), interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The MoES produces the Uganda Education Statistical Abstract every year, and since 2007, questions about pupils and students with disabilities have been incorporated. The Ministry has also been proactive in improving the production of statistics relating to CwDs attending school. A new questionnaire about students with special learning needs by class and gender has been designed and tested in Hoima, Masindi, Iganga and Kamuli. Types of impairment are detailed and cover “mental impairment, visual impairment with low vision and blindness, hearing impairment with profound and hard of hearing, deaf blind, autism, multiple handicaps”. “Multiple handicaps” refers to person with several disabilities except for deaf blind people who have their own category in this survey. This new approach has not been adopted as yet within the MoES208.

Local Government Institutions are also tasked with the collection of statistical information relating to PwDs and CwDs at District, Sub-County, Parish or Village level 209. It however seems that Local Government Institutions do not produce such statistics or they are not available to the public.

Therefore it is evident that there is a significant fragmentation of approach and duplication of efforts to collect and produce estimations of CwDs served by the various public administration bodies.

Similary, Uganda has not established a clear and effective monitoring and complaints mechanisms that would enforce and protect the rights of CwDs. Four government bodies, reporting to the MoGLSD, can potentially address the challenges arising from the enforcement of the human rights and the promotion of equal opportunities of CwDs. These are the NCC, NCD, the UHRC and the EOC. Significantly, the NCC, NCD, EOC and UHRC have very similar roles and powers in relation to the promotion and protection of the CwDs’ rights as per their establishing Acts. In practice, it appears that, whilst the NCC and NCD have mainly an advisory and monitoring role in matters relating to children and PwDs respectively, the EOC and UHRC are legally empowered to investigate and report breaches of the rights of persons and children with disabilities 210. The NCD and NCC are also responsible for the laws and policies in their respective areas of expertise, but neither has been able to put in place an effective system211. None of these four bodies seem to have authority over the others with regard to CwDs’ matters and only the NCC has engaged with CwDs by quarterly chairing a restricted National Disability Forum.

Finally, in the course of this research study, only one national coordination mechanism has been identified: it is the National Steering Committee on Disability. It was established in 2004/05 under the impulsion of the Norwegian National Association of the Deaf (NAD) that had a partnership agreement with the Government of Uganda. It initially ensured coordination of the activities of the CBR programmes implemented at district level. Today, the purpose of the Committee is to “discuss and harmonize sectoral plans and budgets for

208

Christopher Wimon Okecho, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

209

Government of Uganda, Local Government Act, 2001.

United Nations Children’s Fund (UNICEF), Research Study on Children with Disabilities Living in Uganda – Validation Workshop, 2014.

210

211

Human Rights Watch, Discrimination and Violence against Women with Disabilities in Northern Uganda

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda effective implementation of programs to empower PwDs”212 and meet quarterly for this purpose. Chaired by the Minister of State for Elderly and Disability Affairs, it is composed of various stakeholders: Government Ministries (i.e. MoGLSD, MoES, MoH), Kyambogo University, UN Population Funds (UNFPA), DPOs (e.g. NUDIPU and NUWODU) and NGOs of the Disability Movement (i.e. Action on disability and development, Handicap international, Sight Savers and Sense International).

However, the objectives pursued by the Committee and its composition are not adequate to challenge the situation of CwDs in Uganda. The Committee has a general mandate and none of its specific objectives, as defined by the Terms of References, focus on the needs and rights of CwDs. At the time or writing this Report, the Committee has therefore never engaged with matters of interest to CwDs. Besides, the only organisation member of the Committee that is working with CwDs is USDC but it is a member of the Steering Committee, and not of the Technical Committee which acts as a Working Group. The National Committee on Disability has therefore not been granted the capacity to engage with CwDs yet.

Conclusively, there is an evident weak coordination between Government Institutions and Bodies as far as matters relating to CwDs are concerned. The only network gathering various government and non-government stakeholders, the National Steering Committee on Disability, manage general disability matters but has not engaged with issues concerning CwDs. This situation ultimately contributes to the fragmentation of initiatives and the design of a number of small-scale programmes lacking any long term vision and sustainability (as described in the following section on a fragmented programmatic approach).

In addition to this, another bottleneck hinders the full realisation of the rights of CwDs in Uganda. A number of key stakeholders from the Disability and Child Rights Movement have limited knowledge and capacities to engage with the protection and promotion of the CwDs’ rights213. These organisations have an understanding of either children rights or of disability rights, but few of them have succeeded in synthesising and mainstreaming both approaches.

In other words, CwDs are at the cross-road between child issues and disability matters and both Movements tend to overlook their rights. This lack of understanding of the needs and knowledge of the rights of CwDs within most organisations slows down and prevents the full realisation of their equal opportunities and welfare in life 214. To date, only Plan has engaged in a nationwide consultation of children and young PwDs and actively mainstreamed their perspective in its core activities215. NUDIPU and NUWODU, the national umbrella

212

Ministry of Gender, Labour and Social Development, Terms of references for the National Steering Committee on Disability, 2013.

213 Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013. And, Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

214 Uganda Society for Disabled Children (USDC), USDC Advocacy Strategy 2013-19, p. 4-5.

215

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda organisations representing persons and women with disabilities, also acknowledge that their main focus is on young persons and adults with disabilities 216.

2.4.

A Fragmented Programmatic Approach Resulting in Gaps in the Responses Provided by the Duty Bearers 2.4.1.

A Fragmented Programmatic Approach

This section presents an analysis of the programmatic responses designed to address the challenges faced by CwDs for which fragmentation can be observed. This is true from initiatives taken by both governmental and non-governmental key stakeholders and duty bearers.

Due to the set of reasons described in the previous sections (i.e. lack of financial and human resources, weak coordination mechanisms between Government Ministries and Bodies as well as limited knowledge and capacities of these organisations), the government approach tends to be fragmented. This means that, despite the scarce means at their disposal, the three Government Ministries mainly working with CwDs, namely the MoGLSD, the MoES and the MoH, initiate and conduct similar activities. A striking illustration of this situation is the current running of parallel initiatives aiming to collect statistical information relating to CwDs. The MoGLSD uses the Uganda CBR MIS and the Data Collection Tool on Disability, whilst the MoES produces the Uganda Education Statistical Abstract every year. These three tools contain questions relating to CwDs but none of them are exactly the same or even similar. This results in the collection of data which are not comparable and which cannot be cross-checked, although this would be valuable given the lack of statistics relating to CwDs living in Uganda. It is therefore evident that there is a significant fragmentation of approach and duplication of efforts between the various public administration bodies.

The fragmentation of the programmatic responses targeting CwDs given by non-government stakeholders is also apparent. In the course of this Study, forty-six ongoing or completed programmes have been identified. Two-thirds of them address access to education, health and (re)habilitation services for CwDs, while the remaining one third focus on areas such as sport, the needs of girls with disabilities or the empowerment and promotion of the rights of CwDs. Very few organisations mainstream the perspective of CwDs in their programmes.

Indeed, many iNGOs working with children have now integrated some aspects linked to the needs and rights of CwDs but “often childhood disability [remains] a marginal concern” 217.

Furthermore, these programmes deliver tangible outcomes that impact on the lives of some CwDs living in Uganda. So, for example, some CwDs will benefit from an outreach surgical operation and have improved mobility or an NGO will build accessible classrooms and toilets and improve access to school. These activities can definitely change the life course of a CwD.

216

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

217

AbleChildAfrica, http://ablechildafrica.org/resource, 2014, (Accessed 2 April 2014).

96

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda However, most of these projects are small-scale and lack long term sustainability over time.

By their very nature these programmes do not address the need for the structural changes that would make a profound impact on the lives of CwDs in Uganda.

Furthermore, very few NGOs have demonstrated successful programmes addressing the needs of CwDs in Uganda. The only organisation specifically advocating for the rights of CwDs, as enshrined in both the CRPD and CRC, is USDC, but this is rather an organisation of adults speaking on the behalf of the CwDs. This situation is also reflected in the Ugandan Disability Movement. Uganda DPOs are relatively well structured and representative of all categories of PwDs with some visible successes of their advocacy work. However, CwDs living in Uganda are not properly represented - both NUDIPU and NUWODU implement projects partly covering their specific needs and rights, but mostly focus on young persons and adults with disabilities. UPPID supports parents of CwDs but their aim is to mobilise parents of children with intellectual disabilities. There is no specific organisation or committee in a mainstream DPO representing CwDs. It can therefore be concluded that there is clearly a gap in the representation of CwDs in the Uganda Disability Movement. This results in limited programmes targeting CwDs that are initiated or run by Ugandan DPOs.

2.4.2.

Gaps in the Current Programmatic Responses

This fragmented programmatic approach means that the basic needs of CwDs are not given appropriate answers by the key stakheolders and duty bearers. This is particularly striking in the health and (re)habilitation sector as well as in terms of access to education by CwDs.

2.4.2.1. Challenges Faces by Children with Disabilities in Accessing Health and (Re)Habilitation Services The CBR programmes implemented in Uganda for the past twenty years have been proven useful. However, today they are available in only twenty-four out of one hundred twelve Districts. This implies that there are not enough CBR Centres throughout Uganda and that they are overloaded and unable to properly provide information and (re)habilitation services to persons and children with disabilities. Additionally, parents and guardians do not or cannot bring their CwDs to (re)habilitation centres for various reasons. Because communities live very far from hospitals and health centres, people cannot reach them and thus benefit from their services. Public transportation is too expensive for them to go to the District or Regional Hospitals. Some of them also do not know where to bring their child to get assistance. Therefore, CwDs are not taken care of and parents or guardians do not bring them to health or (re)habilitation centres 218.

This whole situation was already described in 2002 by UCRNN: “Accessibility, including distance to health [and (re-habilitation] centres, though improved, still poses a challenge to some areas and to CwDs. Though service delivery is vested in the local authorities, this has failed to address the huge demand that increased with the eradication of cost sharing. USDC operates some medical units to provide specialised (re)habilitation services for CwDs but

218

Bongole, Rose, Ministry of Health (MoH), Interviewed by Nadège Riche, 2014.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda have very limited coverage nation-wide. Local governments plead they lack resources to run health programmes, purchase relevant equipment and adequately furnish their facilities.

Support from the MoH is only in technical terms, supervision and guidelines for planning processes.”219

2.4.2.2. Challenges Faced by Children with Disabilities in Accessing Education CwDs living in Uganda face serious challenges to access educational services.

The immediate barrier hampering CwDs to go and attend school is the lack of inclusive schools adapted to welcome both children with and without disabilities. “The school education system lacks facilities for [CwDs] in most districts in Uganda” 220. This is true of all educational levels with the greater difficulties being the pre-primary one. In Gulu, only babies and children with physical impairments can join the Early Childhood Development Centres (ECDC), but not other CwDs, and this only became possible after intense advocacy efforts from GUWODU, the local DPO 221. Few UPE and USE schools have facilities with a “SNE unit” intended for pupils and students with disabilities so only richer families can affor sending their CwD in privately-owned primary and secondary schools 222.

Accessibility of the school environment, meaning classrooms, library, playgrounds and toilets, is a major issue. CwDs drop out of schools because they cannot even enter the buildings 223. CwDs also need a “board class” with a facilitative atmosphere, which often does not exist. This is a specific classroom for pupils and students with disabilities in an inclusive school. For instance, it would contain specific equipment (e.g. Embosser) or a library with books for children with visual impairments 224. This is also applies to the digital environment: the Government pushes for exams to be done via computers but this is not made accessible to CwDs, so they are left out225.

Besides, instructional materials and equipment for these children are still insufficient. This refers to any types of assistive devices (e.g. Braille embossers and papers, Braille readers) which, although they are expensive, are needed by CwDs to study from primary one to secondary four level. Computers are also necessary for pupils with disabilities from primary

219

Uganda Child Rights NGO Network (UCRNN), Alternative Report to the Government of Uganda’s First Periodic Report, 2002, p. 38.

220 Uganda Child Rights NGO Network (UCRNN), Alternative Report to the Government of Uganda’s First Periodic Report, 2002, p. 20.

221

Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

222

Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014; Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013; Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013; Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

223

224

Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

225 Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda three onwards to take notes faster than using Braille readers and note takers but they are not available either226. At present, the SNE department of Kyambogo University only provides schools with Braille equipment, hearing aids and other assistive devices but this is not sufficient and does not solve these above-mentioned problems. Much more needs to be done. CwDs also lack assistive and supporting services: for instance, deaf and hard of hearing children cannot attend class without a SL interpreter or a signing teacher. This is rarely provided for and most of them are secluded in “Deaf Schools”.

Furthermore, commuting to school is complicated for CwDs. For example, the distance between school and home is an issue for children with physical disabilities. Blind and partially-sighted children need to be guided and accompanied back and forth but parents, siblings or families do not have the time to do it. Boarding facilities can be an alternative to commuting but facilities (i.e. buildings for CwDs, beds, mattresses, food) are missing 227 and such a measure would not necessarily take the welfare of the child as the primary consideration.

Another major problem is the lack of trained SNE teachers. There are too few SNE teachers overall. Many of them are posted to “mainstream” classes and cannot give attention to pupils and students with disabilities. Headmasters report that SNE teachers are underutilised228. The number of CwDs enrolling is increasing so even more SNE teachers should be recruited and posted in schools 229. The lack of training for teachers is also obvious: the teacher curriculum does not include a module on SN&IE and teachers get specialised only if they are interested in SN&IE230.

The final barrier that was identified in the course of this research is the attitudes of parents and families. Parents do not give priority for CwDs to go and attend school 231 and they get easily discouraged because the child is ranked last every year232. It even happens that CwDs are not been picked from schools when the academic terms is over233. Similarly, the negative attitudes of teachers and administrative people affect the enrolment of CwDs in school. They are not cooperation enough in promoting an inclusive eductaional environment 234.

All these serious barriers hamper CwDs to go and attend schools. They result in the very low enrolment rate of CwDs from pre-primary to sencondary level in Uganda.

226

Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

227 Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

228

Baba Diri (Hon.), Margaret, Women Member of Parliament (MP) for Koboko District, Interviewed by Nadège Riche, 2014.

229

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

230 Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

231 Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

232 233 234

Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

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2.5.

Main Conclusions about the Barriers and Bottlenecks Preventing the Full Realisation of the Rights of Children with Disabilities in Uganda In the course of this research study, many barriers and bottlenecks preventing the full realisation of the rights of CwDs were identified. Large misconceptions and stigmas are still associated with disability and this leads to attitudes and behaviours of neglect, abuse and marginalisation of CwDs by communities and families. Although the Ugandan regulatory framework broadly domesticates the CRPD and CRC, there is a need to clarify and strengthen the measures to operationalise the law and the responsibility of the Government Institutions to ensure the enforcement of the rights of CwDs. The protection of CwDs is also weak and existing laws and policies are not fully enforced. Finally, a lack of coordination between different national Government Institutions and gaps in knowledge, understanding and capacities of the organisations of the Disability and Child Rights Movement have partly resulted in a fragmentation of the programmatic approach to the needs of CwDs. The current programmatic responses established by the key organisations of the Disability and Child Rights Movement are limited and lack ambition. They only answer the immediate and obvious needs of CwDs, while only the easy-to-reach children benefit from these projects. The structural barriers are therefore not addressed, although this is the only way forward to make a profound and sustainable change over time in the lives of CwDs. The full realisation of the rights of CwDs will not be achieved, unless collective and individual efforts are driven forward by a leading organisation committed to this goal.

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Part 7: Recommendations to UNICEF Uganda This section provides recommendations to UNICEF Uganda. The review of statistical information, the analysis of the institutional and regulatory frameworks and the mapping of programmes present an understanding of the situation of CwDs living in Uganda and identifies the barriers and bottlenecks preventing the full realisation of their rights. Based on the findings of the Disability SitAn, the following recommendations seek to provide UNICEF Uganda with a set of activities that can be conducted within the framework of their strategic programming from 2015 onwards. This would also reflect the obligations of the CRPD which calls for disability mainstreaming in cooperation development work (Article 32) by providing technical assistance to Uganda.

1. Ongoing Assessment of the Situation of Children with Disabilities Living in Uganda The situation of CwDs is evolving over time. Assessing their needs and the realisation of their rights should be an ongoing process rather than a one off exercise. This would apply equally to consultation exercises with CwDs to hear their views on what they think are their most pressing needs and to the implementation of survey and assessment exercises. Both would allow UNICEF Uganda and its partner organisations to design and plan evidenced based initiatives. In practice, an ongoing process to gather information about the situation of CwDs would enable UNICEF Uganda and key stakeholders to streamline the implementation of programmes as issues arise.

1.1.

Actively Consult and Listen to Children with Disabilities on Issues Concerning Them Two consultations of CwDs have taken place to date. The ACPF consulted about 600 CwDs to produce its Report CwDs in Uganda: the Hidden Reality 235. Plan is about to issue the findings of its consultative workshops of CwDs236, although their methodologies to involve CwDs could not be assessed at the time of writing this Report. It can therefore be concluded that no major representative and countrywide consultation of CwDs has taken place in Uganda yet. This constitutes a major gap in information relating to what CwDs consider as their most pressing needs and it is needs to be addressed.

UNICEF Uganda is therefore advised to assess the Plan consultation, as soon as it is released.

On this basis, the UN Agency should decide whether other consultations of CwDs living in Uganda are needed before planning and implementing any programmes. UNICEF Uganda should also consider establishing an ongoing process of consultation and participation involving CwDs rather than one off consultations. Otherwise the results of these

235

Africa Child Policy Forum (ACPF), Children with Disabilities in Uganda: A Hidden Reality, 2011.

236

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda consultations might be forgotten amidst the running of the programme(s). The consultative platform of CwDs created at the beginning of a process could be involved throughout the implementation phase. This would enable and support the monitoring and evaluation of the outcomes in line with the needs expressed by CwDs and the streamlining of the programmes. The organisations of the Child Movement would be ideal partners for UNICEF Uganda to run such consultations and set up an ongoing process or framework listening to hear the views of CwDs about their situation.

 Recommendation n°1: Actively consult and listen to CwDs on issues concerning them on an ongoing basis

1.2.

Support the Collection of Statistical Information Relating to Children with Disabilities Living in Uganda There are significant gaps in the statistical information relating to CwDs living in Uganda and UNICEF Uganda must therefore take action to improve the collection and availability of data that will inform and support the development programming.

This would also assist Uganda in putting into practice the recommendations, which it received during its second periodic review on the implementation of the CRC: “the Committee recommends that the State party [i.e. Uganda] take all necessary measures: (b) To collect adequate disaggregated statistical data on CwDs and use such data in developing policies and programmes to promote their equal opportunities in society, paying particular attention to children living in the most remote areas of the country” 237.

This collection and interpretation of appropriate information, including statistical and research data about CwDs, should be done on a regular basis through the existing channels and frameworks. The execution of specific and one off surveys could be used as a complementary tool, rather than as the main process to collect statistical information relating to CwDs. Setting up a framework to collect data on a regular basis would also release the pressure to find funding and run one off expensive surveys across Uganda whose results become rapidly outdated.

1.2.1.

Improve Statistical Information Relating to Children with Disabilities Living in Uganda Measuring the child disability prevalence is a complex task. Definition of disability, approach by “difficulties in functioning”, sets of questions relating to PwDs and CwDs as well as design of data collection tools have been elaborated and tested in the global UN Working Group on Disability and Statistics. The Ugandan Government Institutions and agencies have already engaged in data collection and developed statistics relating to persons and children with disabilities. The DPOs operating in Uganda have expertise and can assist in gathering data

237

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 9.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda relating to disability. Therefore, there is no need to design new methods to collect statistics relating to CwDs living in Uganda. The data collection systems already in place should rather be used and reinforced.

1.2.1.1. Adopt Available Global Guidelines Relating to Disability Measurement UNICEF and its partner institutions in Uganda should use the globally available methodologies and tools relating to disability measurement. This would then allow comparison between Ugandan statistics and those for the rest of the world. The following recommendations could contribute to improving the availability and quality of statistics on CwDs living in Uganda: - Follow the WHO ICF: “The ICF is neither a measurement tool nor a survey instrument but it is an internationally agreed classification for health and disability, which can act as a standard worldwide. In parallel to global trends, Ugandan stakeholders should base their definition of and approach to disability on the ICF. This would ensure a broad coverage of all impairments and conditions of PwDs (because it is mainly limited to sensory and physical impairments in statistics available for Uganda). This would also include other indicators measuring disability such as activity limitations and participation restrictions, related health conditions and environmental factors”238; hence reflecting the social model of disability promoted by the CRPD. - Use the sets of questions relating to CwDs aged two to five and five to eighteen designed by the UN Washington Group on Disability and Statistics: Measuring the child disability prevalence adds another layer of difficulties. With the active participation of UNICEF, the UN Washington Group on Disability and Statistics has recently developed and tested a set of questions for CwDs aged two to five. The sets of questions for CwDs from the age of five and adults with disabilities have also been agreed upon. UNICEF Uganda should use and promote these survey instruments while engaging with Ugandan partners.

1.2.1.2. Fill the Gap: Disaggregate and Break Down Statistical Information Relating to Children with Disabilities Living in Uganda The available statistics concerning CwDs are scarce and provide an incomplete picture of their living conditions in Uganda. Data is either not gathered at all or sometimes collected but not analysed adequately leading to gaps in information239.

- Use a clear age band from zero to eighteen years in statistics relating to CwDs: The child disability prevalence in Uganda is difficult to assess for several reasons. One of them is the use of different age bands: children and young people are often aggregated together (e.g. from zero to fourteen and then from fifteen to twenty-four

238

World Health Organisation (WHO), World Bank, World Report on Disability, Geneva: WHO/World Bank, 2011, p. 44-46.

239

Helen Nviiri, Pamela Kakande, Uganda Bureau of Statistics (UBOS), interviewed by Nadège Riche, 2013.

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years), although the CRC and the Children Act define a child as a human being below eighteen years. UNICEF Uganda should promote a clear age band: children from zero to eighteen years should constitute a distinct group in censuses and surveys, while any human being aged above should be considered as a young person or an adult.

Streamline the understanding of the profile of CwDs living in Uganda by disaggregating the data according to various indicators: The available statistics about CwDs living in Uganda focus on child disability prevalence and school enrolment rates. There is a need for more information to understand who the CwDs in Uganda actually are. Data disaggregated by various indicators should be collected: So for example the data could differentiate gender, different age bands between zero and eighteen years of age, geographical distribution across the Regions and Districts, place of residence (rural versus urban), impairments and conditions, family situations (e.g. orphans, street children) and CwDs with HIV/AIDS. Fill the gaps in statistical information in fields associated with the everyday lives of CwDs: In addition to better defining and understanding the profile of CwDs, further research is also required into their living conditions. Aside from the school enrolment rate, data is missing from a wide range of fields: birth and death registration, number of CwDs living in institutions, access to health care and (re)habilitation services, experience of gender-based violence, abuse and exploitation based upon disability discrimination, humanitarian action and civilian casualty rates, education and vocational trainings, among others.

1.2.2.

Financially and Technically Support the Uganda Bureau of Statistics to Produce Comprehensive Statistics relating to Children with Disabilities Living in Uganda UBOS is the leading body creating statistics in Uganda. It has introduced modules on disability in most of its censuses and surveys and produced data relating to persons and children with disabilities. UBOS is a member organisation of the UN Washington Group on Disability and Statistics and follows their guidelines to design survey questionnaires. The questions relating to disability have moved to a “limitations in functioning� approach over the past decade. UBOS demonstrated a strong commitment and a relatively good understanding on how to assess and collect information about the situation of PwDs. Despite this favourable trend in the past ten years, there appears to be a backward shift, most probably due to lack of external funding. The National Census, which will be conducted in 2014, has included a module with four questions relating to the difficulties a person aged two and above has in (a) walking/moving, (b) seeing, (c) hearing and (d) communicating. The data produced by the Census 2014 will not be comparable to ones presented by the Census 2002, the UDHS 2006 and 2011 or the UNHS 2005/06 and 2009/10, because the questions on persons having mental/intellectual impairments or problems in self-care are not part of this module to be used in 2014. Consequently information about only part of the population of PwDs will be captured. In addition, UBOS has deleted the module or questions relating to disability in the UNHS 2012/13 which suggests that it will be difficult for UBOS to produce accurate data on CwDs in the coming years.

On this basis, UBOS would require human and financial resources support from UNICEF Uganda to produce more comprehensive methodology and improved statistics about CwDs

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda living in Uganda. Both organisations should partner and adopt a twin-track approach to the production of reliable and accurate statistics relating to CwDs living in Uganda starting from the age of two: i.e. work with UBOS to ensure that the information generated about CwDs by the census and surveys is as comprehensive as possible while also working with them to design and conduct a specific survey about CwDs from birth to eighteen. Another key aspect of the conduction of these surveys and censuses are the capacities of enumerators to understand and identify the various types of disability of people. UNICEF and the MOGLSD should therefore assess and most probably train the capacities of UBOS enumerators in disability.

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Disaggregate and break down data relating to CwDs in the framework of the Census 2014: The Census 2014 will gather a certain amount of information that should be fully extracted and analysed. According to the type of data gathered during the collection phase, the widest range of indicators should be defined together with UBOS to better assess the profile of CwDs. Figures should also be analysed in relation to the fields of the everyday lives of CwDs. Advocate that UBOS reintroduce a module and a large set of questions relating to CwDs from the age of two in the next UNHS and UDHS: This would allow an ongoing assessment of the situation and needs of CwDs using a sample representative of the Ugandan population. Since UNICEF Uganda partly funds these surveys (e.g.

UDHS 2006), its advocacy in favour of a disability module would be very influential.

Organise a survey specific to CwDs living in Uganda: The tools to assess the child disability prevalence and the needs of CwDs from the age of two have been developed and tested by the UN Washington Group on Disability and Statistics. The first stage of such a survey would therefore be a pilot project to customise the existing international set of questions to the Ugandan context. This would validate the extent to which the questions are understood by people and their appropriateness. The second step would then consist of the survey itself. It would ideally be a national survey, should there be sufficient financial resources. A survey targeting a sample representative of the population would also be an option to give an insight into the situation. UBOS would be ready to cooperate with UNICEF Uganda, as this has been done previously to produce statistics on violence against children living in Uganda. However, UBOS would require financial resources from donors to conduct such a survey as well as technical support from experts to design the survey and questions targeting CwDs living in Uganda. In parallel, UNICEF Uganda should monitor the development of methodologies assessing the disability prevalence in the population of CwDs aged zero to two and include it in all future surveys. An alternative way forward could consist in creating a disability-specific MIS taking example of the successful results achieved under the Sunrise- Orphans and vulnerable children (OVC) project conducted by USAID. Assess the outcomes by holding a Workshop or a Forum: High level representatives from key stakeholders and advocates from the Disability Movement should be invited. Direct representation of CwDs should also be foreseen and prioritised.

Participants should discuss and evaluate the latest figures relating to CwDs living in Uganda and the implications in terms of disability issues, statistics and challenges with regard to policy formulation and programmatic responses. The Workshop or Forum should also promote a human rights based approach to disability.

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 Recommendation 2: Improve statistical information relating to CwDs in partnership with UBOS

2. Establish Strong and Sustainable Institutional Frameworks

Regulatory

and

The full realisation of the human rights of CwDs enshrined in the CRC and CRPD cannot be achieved without the establishment of strong and sustainable regulatory and institutional frameworks. Laws and policies must domesticate the provisions laid down in both Conventions to guide their realisation in practice. The local and national Government Institutions must be granted with powers and capacities to fulfil their role in leading the implementation of the rights of CwDs, while key NGOs and DPOs of the Child and Disability Rights Movements should be empowered to continue advocating for them.

2.1.

Review and Enforce the Ugandan Regulatory Framework Relating to Children with Disabilities Uganda has developed a comprehensive legal and policy framework that seeks to realise the rights of persons and children with disabilities. The Government has enacted legislation and policies specifically designed to address the rights of PwDs in general and particular kinds of impairments specifically. In most laws, there are provisions that aim to promote and protect some of the rights of CwDs. One of the fundamental obligations contained in both the CRC and CRPD is that national laws should guarantee the enjoyment of the rights outlined in the Conventions. The CRPD may be incorporated through constitutional, legislative and regulatory measures (CRPD Article 4). Except in the rare case that the laws in a country already conform fully to the requirements of the Convention, a State Party will normally have to amend existing laws or introduce new laws in order to put the Convention into practice. In Uganda’s case there is need to either amend existing laws, policies and programmes or introduce a comprehensive law on disability incorporating the heightened protection provided by the CRPD. Ideally, there should be a comprehensive and unequivocal legal statement of the rights of persons and children with disabilities and detailed legislation to make those guarantees real in practice. It is critically important that the recognition and protection of the rights of persons and children with disabilities be enshrined in the supreme law of the country, that is, in the national constitution or in basic laws. This will ensure the highest possible legal protection and recognition.

A number of areas in the Ugandan regulatory framework require amendment to bring it in line with the CRPD and CRC. For example, although the current PwDs Act is progressive in certain areas, there are a number of instances where it fails to reach the high standards set out in the CRPD, for example in the article relating to –inclusive- education. It is therefore recommended that UNICEF Uganda seeks to work in partnership with the Disability and Child Rights Movement in Uganda to advocate as far as possible for changes not just in the statutory laws, but in the Constitution, from which all other laws derive their validity. The

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda opportunity presented for the domestication of the CRPD should be used to review and amend both legislation and policies in order to fully respect the values, principles and rights enshrined in both Conventions and to effectively prioritise the perspective of CwDs. Since CwDs are among the most vulnerable communities both socially and economically, it is critical that the rights of CwDs should be prioritised in all laws, policies, programmes and mechanisms promoting and protecting the rights of children and/or persons with disabilities.

For this purpose, a rights based social model of disability shall be adopted. The immediate priority should be to review and amend the PwDs Act and Children Act, because these provisions outline the legal framework that defines the rights of CwDs. Since an amended PwDs Act is currently standing for approval by Cabinet, UNICEF Uganda has a window of opportunity to call for the immediate integration of specific articles relating to CwDs. Another focus could be on the policies of the education sector. Also pending an approval by Cabinet, the draft SN&IE Policy should be amended and promote IE exclusively, in line with CRPD Article 24. Similary, the Education Act should be amended to intergrate the 10% education budget allocation to address the needs of persons and children with disabilities of the PwDs Act and all other above accessibility related issues. The implementation of the draft SN&IE draft Policy should be linked to the implementation of the Education Act, of the Business, Technical and Vocational Education and Training (BTVET) Act, 2008, and the NonFormal Education Policy for Educational Disadvantaged Children. CwDs shoud also benefit from a disability mainstreaming in the Uganda ECD Policy, what is missing at this point in time. Accessibility of the physical and digital environments is another major concern for CwDs: for example, the lack of accessible classrooms and toilets is the number one reason why CwDs do not go and attend school. The DPOs in Uganda have successfully advocated in favour of access provisions in several legislations but this is not enough. It is recommended that UNICEF Uganda partners with the Ugandan Disability Movement and seeks to strengthen the laws and policies taking into account the specific needs of CwDs (and not those of adults with disabilities only). Finally, the Child Labour and OVC policies would benefit from UNICEF Uganda’s close attention. Although CwDs are identified as one of the vulnerable categories of children in both policies, they tend to be considered last and there is no specific articles covering addressing their situation 240. Conclusively, Uganda is fairly well engaged with the domestication of the CRPD and CRC provisions. A continuous review and amendment of laws, policies and programmes is however still required and it is recommended that UNICEF Uganda supports this effort taking CwDs’ welfare as the primary consideration241.

But, even though Uganda has developed a comprehensive regulatory framework that seeks to realise the rights of CwDs, the main problem lies in their implementation. UNICEF Uganda should therefore focus on the full enforcement of all existing provisions targeting CwDs. Some of these measures do not require any review and should be implemented right away in cooperation with the responsible local or national Government Institutions.

One of the main barriers hampering the proper enforcement of the provisions relating to CwDs is the lack of implementing acts. Some legislation requires the passing of

240

Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

241

Annex 2 presents detailed analysis and suggestion of amendment for each laws and policies.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda interpretation guidelines because they are technical in nature, accessibility of the physical environment being an example.242 UNICEF Uganda should therefore advocate for the drafting and adoption of two types of instruments. Clear statutory instruments, such as rules and regulations, will assist the operationalization of the rights of CwDs. For example, the PwDs Act was adopted in 2006 and to date there are no regulations passed for its implementation. This will be a straight-forward action. Another approach is the promotion of the use of bye-laws and ordinances. Organisations and institutions responsible for the promotion and protection of CwDs’ rights would define administrative provisions that they must then enforce. This could be a rapid and effective way forward compared to amending statutory laws. It is therefore suggested that UNICEF Uganda promotes the adoption and use of regulations and bye-laws to ensure the implementation of existing provisions targeting CwDs. The insufficient financial and human resources allocated to programmes targeting CwDs and to responsible local and national Government Institutions is another reason explaining the lack of a proper enforcement. Without appropriate funding, no activities can take place and deliver changes. A challenging but immediate action line is to advocate for increased budget allocations to responsible Government Institutions and earmarking for CwDs in existing programmes. For example, the Faculty of Special Needs Education and Rehabilitation of Kyambogo University is in charge of providing assistive services and distributing appropriate scholastic materials for children with different types of disabilities but is not able to cope with the demand. Financial support will make a difference and directly support CwDs in attending school. Besides, a direct result of these limited budgets is the lack of trained staff working with CwDs in local and national Government Institutions, hospitals and schools.

Increased budgets will de facto encourage institutions to hire more staff working with CwDs but this will not be sufficient. Additional incentive mechanisms to encourage therapists and SN&IE teachers to remain in their position should also be established. To conclude, UNICEF Uganda should engage with these concerns of limited financial and human resources to realise the rights of CwDs without delay.

 Recommenation n°3: Review and enforce the Ugandan legal and policy frameworks

 Recommendation n°4: Increase budget allocations to responsible Government Institutions and earmarking for CwDs in related programmes

242

Okecho, Christopher Wimon, Ministry of Education and Sports (MoES), Interviewed by Nadège Riche, 2013.

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2.2.

Structure the Institutional Framework and Reinforcing the Knowledge and Capacities of Key Stakeholders 2.2.1.

Call for the Coordination and Alignment of the Efforts of the Local and National Government Institutions Although the institutional framework promoting and protecting the rights of CwDs has been established through the passing of various Acts, it needs to be seriously strengthened. It has been evidenced that there is a significant fragmentation of approach and duplication of efforts to both collect and produce information about CwDs, as well as design and implement programmes lacking long term sustainability.

The lead Ministry for disability affairs, the MoGLSD, has not been granted powers to influence other Ministries running interventions targeting CwDs, such as the MoES and MoH. Equally, the NCC, NCD, EOC and UHRC share similar responsibilities in the monitoring and complaints mechanisms, without any one of these national bodies having taken a lead coordination role at this point in time. Finally, the decentralisation of government in Uganda has resulted in the central government having little effective control on how national legislation is enacted at the local level. This is further compromised by weak accountability and the need for good governance structures.

UNICEF should therefore advocate for the provision of better coordination mechanisms for the MoGLSD, the lead Ministry for disability affairs, and the alignment of the efforts of various national Government Ministries and Bodies in relation to CwDs. This would help alleviate the scarce financial and human resources of the different public administrations.

The creation and operation of a coordinating body to oversee and advice on the rights of CwDs is highly required. Such a mechanism should be linked to other Government Ministries (e.g. MoES, MoH and MoFPED) and bodies such as the NCC, NCD, EOC and UHRC. By adopting a coordinated approach under the lead of the MoGLSD, it will be possible to pool resources and capacity to work together to carry out, for example, joint research on the status of CwDs, investigations of breaches of the human rights of CwDs, and the documentation and publication of good practices promoting and protecting the rights of CwDs. Such a coordinating mechanism will strengthen the protection of the rights of CwDs in Uganda. A practical answer to this issue could be the establishment of a new Task Force on CwDs under the National Steering Committee on Disability, led by the MoGLSD with an active technical support from UNICEF Uganda.

Matching harmonisation of efforts at national level, coordination mechanisms among local Government Institutions should also be thought of and established. This would have two levels. First, local partnerships gathering LCs for PwDs and all district officials working with CwDs should be set up. This will ensure the sharing of knowledge between every person in charge, the definition of clear and common guidance and the mainstreaming of CwDs’ perspective in all local level committees, councils and programmes. Secondly, District elected and administrative people working with CwDs would benefit from a national network gathering their peers. They will be able to, for example, share successes and best 109

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda practices on how to implement laws and policies. Ideally, physical meetings should be facilitated but the use of digital means (e.g. mailing list) could also be a feasible alternative.

 Recommendation n°5: Coordinate efforts among local and national Government Institutions

2.2.2.

Create a Ugandan Partnership on Children with Disabilities In addition to weak coordination between local and national Government Institutions, the limited sharing of knowledge and harmonisation of activities between governmental and non-governmental stakeholders has led to a fragmentation of initiatives and the design of a number of small-scale programmes lacking long term sustainability.

On this basis, UNICEF Uganda should establish a Uganda Partnership on CwDs following the guidelines developed by the GPcwd to establish national partnership on CwDs 243. Led by UNICEF Uganda and the MoGLSD, this partnership would act as a network including all relevant organisations working with CwDs in Uganda. This should include the various local and national Government Institutions, international and Ugandan NGOs and DPOs, especially those specific for CwDs, donor organisations and, if applicable, the private sector.

The partnership should act as a platform for discussion and sharing of good practices, advocacy and collective action. This would ensure that the rights of CwDs are prioritised by both the Disability and Child Rights Movement. This would also form a representative forum advising on how to mainstream the perspective of CwDs in other national fora. Funding opportunities from the GPcwd could be used to develop programmes under such a national partnership.

This Uganda Partnership on CwDs could follow the models existing at international level, the GPcwd, or NPcwd that have been formed in Rwanda and Kenya. Drawing from these two experiences in the East African region, several lessons can be learnt. Both NPcwd started with a specific goal before expanding into a more structured network: Kenya initially met to brainstorm on the meaning of IE in the country while the Rwanda NPcwd was created with the aim of preparing the National Children’s Summit. Both groups created thematic working groups (e.g. education) and tasks forces (e.g. policy, watchdog network, research) to streamline the work. This ultimately led into the issues of CwDs to be more visible nationwide: the Kenyan NPcwd was invited to join the validation committee of the national education support programme and, in Rwanda, a child with a hearing impairment was elected as President of the Forum sending a strong message to the general public. Recalling the feedback of UNICEF Rwanda, two important aspects must be thought of right from the beginning: “firstly, it is important to collaborate and harmonize efforts to achieve results at the highest level over the short term; secondly, it is extremely important to use existing

243

Global Partnership on Children with Disabilities (GPcwd), Guidance for Establishing a National Partnership on Children with Disabilities (NPcwd), 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda advocacy platforms, existing resources, and existing organizations to achieve success in promoting the rights of CwDs.”244 Furthermore, UNICEF Uganda can also learn from the successful experience of the Uganda National Youth Working Group (NYWG). “[Set up] in 2011 by the MoGLSD, UNFPA, the National Youth Council, War Child UK and Restless Development, it was established as an informal platform for shared learning on youth issues to help address the challenge of poor coordination in the youth sector. It has grown from five to over 140 individual members representing approximately eighty different organisations. [The NYWG meets six times a year and the sub-groups gather between the larger NYWG meetings]. The NYWG is increasingly being approached by partners interested to draw on the expertise of the members [and, early 2014, UNICEF Uganda has invited] the NYWG Chair to participate in [its] annual retreat to support development of their new research and evaluation strategy.” 245 Two main success factors explain such a development. The NYWG was initiated by a core group of organisations that were strongly committed and are still members. The NYWG has also allowed freedom to the network to decide what topics should be discussed; this has created appropriation of the activities by the joining member organisations.

To conclude, UNICEF Uganda has solid experiences to learn lessons from and guidelines to follow in order to establish a strong and successful Uganda NPcwd. This would ultimately provide a coordinated platform for all organisations working with CwDs in Uganda.

 Recommendation n°6: Create a National Partnership on CwDs lead by UNICEF Uganda and the MoGLSD

2.2.3.

Building the Knowledge and Capacity of Key Stakeholders Working with Children with Disabilities in Uganda A lack of understanding of the needs of CwDs among most stakeholders working with them has been reported during the course of this study246. They also lack know-how of the CwDs’ rights enshrined in the CRPD and CRC and of their obligations arising from the national laws and policies. This situation partly explains the lack of proper implementation and enforcement of the provisions relating to CwDs. It overall slows down and prevents the full realisation of equal opportunities for CwDs and their general welfare in life. The reinforcement of the understanding of the needs and knowledge of the rights of CwDs as well as the strengthening of the capacities of all stakeholders should therefore be addressed.

244

Global Partnership on Children with Disabilities (GPcwd), Report of the Second Forum, 2013, p. 15 and 16.

National Youth Working Group (NYWG), National Youth Working Group – Overview, 2014, p. 1.

246 Adong, Caroline, National Council for Disability, Interviewed by Nadège Riche, 2013.; and Asamo, Helen Grace, National Union of Women with Disability in Uganda (NUWODU), Interviewed by Nadège Riche, 2014.

245

111

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda UNICEF Uganda should firstly aim to reinforce the knowledge of the rights of CwDs. In this regard, relevant material (e.g. CRPD, CRC, laws, policies, research and reports) should be gathered in an online repository where everyone could access and download the information needed. The dissemination of simplified and easy-to-read versions of this documentation to key stakeholders should also take place. In addition, a series of awareness raising and capacity building trainings should include a wide range of directly involved actors such as national and local decision makers, DPOs, child rights organisations and primary duty bearers of CwDs (e.g. parents, guardians or caretakers). Support should go through local and national Government Institutions to be sustainable over time. At local level, there is a strong need to build the capacities of Disability Councils and LCs, so they can raise awareness in their community247. Local DPOs should also be reinforced because they have a role to play too: they must support policy design and monitor their implementation at district level.

More widely, health and educational staff should access high-quality training to cater properly for the needs of CwDs. In the programmes, which UNICEF Uganda will design and implement, modules training health workers or current and future teachers should be incorporated. Once more, this should be developed hand-in-hand with local and national Government Institutions and DPOs. This would allow appropriation by the Ugandan health and education sectors and tackle this systemic issue. This echoes the recommendations put forward by the CRC Committee in 2005: Uganda should “take all necessary measures […] to ensure that professionals working with and for CwDs, such as medical, paramedical and related personnel, teachers and social workers, are adequately trained.” 248 UNICEF Uganda should therefore strengthen the knowledge and capacities of key stakeholders working with CwDs through raising awareness and capacity building events.

The UN Agency should also support the training of the staff in the health and education sectors. This would ultimately challenge the discriminatory social norms linked to disability in Uganda.

 Recommendation n°7: Build the knowledge on the needs and rights of CwDs and strengthen the capacities of key stakeholders and duty bearers

3. Design and Implement Programmes Targeting Children with Disabilities Living In Uganda Earlier on it has been demonstrated that the programmatic approach is fragmented and lacks long term sustainability. To remedy this situation, UNICEF Uganda is advised to

247

Adong, Caroline, National Council for Disability (NCD), Interviewed by Nadège Riche, 2013.

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 9.

248

112

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda mainstream disability in the design and implementation of programmes in selected key areas in partnership with organisations of the Child and Disability Movement. This will also provide an answer to the gap in implementation of the laws and policies.

3.1.

Mainstream the Perspective of Children with Disabilities in all Programmes Conducted and Sponsored by UNICEF Uganda UNICEF is the leading UN Agency promoting and advancing the rights of children, including CwDs, worldwide. In Uganda, UNICEF has conducted and/or funded a number of studies and programmes but are lacking clear disability mainstreaming. In the field of statistics, UNICEF has run MICS and other types of surveys and mapping exercises relating to children.

However, this has not “been rolled out [in relation to CwDs] and UNICEF Uganda did not have disability aggregated data on CwDs either in the development programs or in the humanitarian situation in Northern Uganda.” 249 Similarly UNICEF Uganda has rolled out good programmes relating to birth registration and immunisation but they do not collect information about the conditions of the child – i.e. whether s/he is disabled. It is therefore difficult to assess if CwDs benefit from these programmes at all. Even in WASH programmes it is not possible to know to what extent the water pumps are made accessible for women with disabilities to use250.

It is therefore recommended that UNICEF Uganda mainstreams disability in all its programmes. In other words, all programmes should have a disability component. It would not be a rights based approach to have disability specific programmes. UNICEF Uganda should also include disability mainstreaming as a criteria for all sponsored projects.

For that purpose, UNICEF Uganda should put in place a structure to facilitate efficient disability mainstreaming. This can only be achieved if an “internal watch dog” position is created. It could be a desk officer in charge of CwDs in Ugandan headquarters. The responsibility of this person would be to follow up and monitor disability mainstreaming.

UNICEF Uganda should therefore recruit someone with a sound disability background and expertise in charge of CwDs251. Additionally, the organisation should also develop its capacity to work with CwDs. There is a need to raise awareness among the top decision-makers so that they can guide and lead the organisation in disability matters, while advisors and officers should benefit from in-depth trainings about the rights and needs of CwDs to design and implement disability mainstreaming into the next strategic programming of UNICEF Uganda252.

249

Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm - Evaluation of Norwegian support to promote the rights of persons with disabilities Uganda Country Report, February 2012, p. 21.

250 Bakundana, Flavia, Heijnen-Maathuis, Els, Save the Children, Interviewed by Nadège Riche, 2013.

251

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

252 In that respect, NUWODU also pointed out that they could organise and run their “Disability Equality Training” for UNICEF Uganda staff and decision makers. This training is aimed at raising awareness about the

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda To conclude, UNICEF Uganda should include and prioritise the perspective of CwDs in all studies, surveys and programmes that the agency carries out or funds in order to ensure the progressive realisation of the rights of CwDs living in Uganda.

 Recommendation n°8: Mainstream the perspective of CwDs in all UNICEF Uganda programmes and surveys

3.2.

Identify Key Focus Areas for Action: Disability Prevention, Health and (Re)Habilitation, Education, Social Norms Change and Awareness-Raising There would be many potential areas for interventions to improve the lives of CwDs in Uganda. However, based on the literature review and interviews, a select number of main focus areas appeared pivotal to maximise structural change. It should also be recognised that due to the limited resources available not all areas can be addressed at the same time and there is a need to prioritise.

The Government of Uganda has put in place positive and pro-disability laws and policies, but experience of CBR suggests that PwDs in rural communities continue to be marginalised. This marginalisation starts in the family and continues throughout the school system, with the highest drop-out rates for children in universal primary education being those for CwDs. District and community leaders do not necessarily think about disability in their planning and disability continues to be a hidden problem in most communities. There is a lack of appropriate education services and training and few attempts are made to integrate PwDs into the community. There is limited information on health issues to help families and communities to understand and overcome the challenges they face related to disability.

There are also limited specialised health and (re)habilitation services available to cater for the different needs of persons and children with disabilities.

The Government of Uganda has enacted appropriate policies seeking to empower PwDs. However, there are still major gaps in knowledge, attitude and practices towards persons and children with disabilities, particularly at household level. People are not sensitised about the problems of disability, due to poor delivery of information. Referral for CwDs is inadequate and most services are concentrated around Kampala. PwDs are among the most disadvantaged in Uganda, with women and girls particularly disadvantaged. There is little empathy and support for PwDs to access their rights and create popular demand for appropriate services.

This situation of CwDs had already been captured in 2005 by the CRC Committee.

“Notwithstanding [Uganda’s] continuous efforts to support CwDs through targeted State

needs and rights of PwDs and women with disabilities as well as giving advice and recommendations as to how to mainstream disability in programmes. NUWODU has already run the programme for DFID and the Ministry of Gender, Labour and Social Development.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda welfare measures, including direct and indirect assistance, the Committee is concerned about the persisting de facto discrimination. It notes with concern that equal opportunities for CwDs are jeopardized, e.g. by their limited access to public buildings, government services and public transportation, and that social stigma, fears and misconceptions surrounding disabilities remain strong in society leading to the marginalization and alienation of these children. It is further concerned that children are doubly disadvantaged if they live in rural and remote areas.”253 For these reasons, a stronger programmatic approach is needed to tackle the needs of CwDs living in Uganda and UNICEF Uganda has a central role to play in the promotion and protection of the rights of CwDs. UNICEF Uganda should engage in programmes relating to disability prevention. Other focuses of UNICEF Uganda activities should cover the living conditions and welfare of CwDs by ensuring access to health services, (re)habilitation and education254 as well as social norms change and raising awareness of the communities to fight against stigmatisation and discrimination of persons and children with disabilities. This is however not sufficient as a lot of the issues are linked to planning capacities of national Government Institutions, local districts and community leaders.

Such an approach will also support the implementation of the recommendations put forward by the CRC Committee during Uganda’s second periodic CRC review of 2005.

Uganda should “take all necessary measures: (c) to provide CwDs access to adequate social and health services, to quality education and to the physical environment, information and communication; (d) to raise awareness about CwDs, including their rights, special needs and potential, in order to change prevailing negative attitudes, misbeliefs and prejudices against CwDs by initiating and supporting public information campaigns.” 255

3.2.1.

Disability Prevention Programmes

“The major causes of disability in Africa are communicable diseases, war, accidents, and inadequate prenatal and neonatal health care services”. Among children in Africa, the leading cause of disability is illness acquired before the age of five years, accounting for one third to half of the cases. The majority of these disabilities are preventable.”256 Based on this statement, UNICEF Uganda should design and run disability preventive measures targeting children living in Uganda.

Massive sensitisation on disability prevention should be the first step because the number of CwDs seems to be increasing. In particular, focuses on maternal health, immunisation and gender based violence would help to prevent disability. Many diseases and impairments are

253

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 8.

254 These focus areas are considered the most important ones by all interviewees.

255

Committee on the Rights of the Child, Consideration of Reports Submitted by State Parties under Article 44 of the Convention, Concluding observations of the Committee on the Rights of the Child: Uganda, 2005, p. 9.

256 African Child Policy Forum (ACPF), Children with Disabilities in Africa: Challenges and opportunities, Addis Ababa: The African Child Policy forum, 2011, p. XXXV.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda also the result of poverty. This may be, for example, due to lack of immunisation, poor nutrition and lack of access to health treatments. The second step should be to assess CwDs as early as possible and provide for care and (re)habilitation: indeed, some children paralysed due to polio can move and walk again after surgery by an orthopaedic surgeon257.

Launching such disability preventive programmes seems feasible in a short term since UNICEF Uganda has long standing and successful programmes relating to immunisation, malaria, malnutrition, maternal and new-born health258. This would only require mainstreaming the perspective of CwDs in these currently running programmes. UNICEF Uganda could even rely on existing documentation, partners and networks. For example, CoRSU has documentation available relating to (re)habilitation and health services for CwDs that could be distributed within the framework of UNICEF programmes. These free booklets, for example, cover primary care or nutrition. Some are also translated into local languages259.

3.2.2.

Access to health services and (re)habilitation

Access to health services and (re)habilitation is a right for CwDs under CRPD Articles 25 and 26 as well as under CRC Articles 24, 25 and 39. This is also considered as the primary needs of CwD to be addressed: once a child has been identified, assessed and provided with care and (re)habilitation, s/he can move around, mix with people his/her age and go to school 260.

Since most of these health and (re)habilitation services are delivered by Government Institutions and programmes, UNICEF Uganda should partner with the competent Ministries, meaning the MoGLSD and the MoH, and aim to reinforce their capacities in delivering those services to CwDs. In this respect, UNICEF Uganda should reinforce the geographic coverage and emphasise the perspective of CwDs in these ongoing programmes run by both the MoGLSD and MoH. They should cover early assessment and (re)habilitation of CwDs as well as on-going access to health services in all regions of Uganda, and not only in the Kampala region. CBR centres could also be established at District level. In practice, various types of activities should be launched. The primary concern should be on accessibility for persons and children with disabilities. This covers physical access to health centres and the provision of accessible health and (re)habilitation equipment (e.g. hospital beds). A second aspect is related to the training of health workers on how to provide health services and (re)habilitation to different categories of CwDs. Relaying the NUDIPU recommendations in its CRPD parallel report261, “Government should strengthen the recruitment, training and deployment of staff in the areas of psychiatry, physiotherapy, occupational therapy, speech and language therapy and

257 258

Adong, Caroline, National Council for Disability (NCD), Interviewed by Nadège Riche, 2013.

Government of Uganda, United Nations Children’s Fund (UNICEF), Country Programme 2010-2014, 2009.

259

Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

Adong, Caroline, National Council for Disability, Interviewed by Nadège Riche, 2013.

261 National Union of Disabled Persons in Uganda (NUDIPU), Shadow report to the United Nations Committee of Experts on the Implementation of the Convention on the Rights of Persons with Disabilities (CRPD), 2010.

260

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda “Ears, Noses and Throats” specialists from health centre III to national referral hospitals.

Disability related issues should be mainstreamed in the training curriculum of all health workers to create awareness.” Finally, emphasis should be made on the provisions of assistive and mobility devices such as hearing aids, white cane, glasses, wheel chairs and others. This is crucial: “once this is done, the CwD is empowered and feels more comfortable to move around.” 262 UNICEF Uganda should support the MoH in producing and distributing such devices. This could be done by supporting the establishment and ongoing work of the orthopaedic workshops in producing locally-designed devices and/or assist the Government Institutions to subsidise medical appliances.

Additionally, most families with a CwD struggle to travel to health centres and hospitals because they cannot afford the transportation and/or overnight cost 263. UNICEF Uganda should engage together with the relevant Ministries to establish sustainable programme(s) delivering outreach health and (re)habilitation services to persons and children with disabilities living in rural and remote areas. This could for example be organised in the framework of existing programmes (e.g. CBR programme). Ideally it would be about child health protection measures and lead by health workers targeting CwDs in their communities.

Those (re)habilitation activities should be based within the communities because the process is too centralised nowadays264. UNICEF Uganda could also engage with CoRSU. This hospital is the only one providing free surgery and (re)habilitation services to CwDs (except for transport and accommodation fees). It is also the only one providing certain orthopaedic and plastic reconstructive surgery in Uganda265. Although CoRSU is successfully delivering its mission, this hospital should not grow aside from services delivered by Government-led health centres and hospitals. UNICEF Uganda should therefore support the current establishment of a public private partnership between CoRSU and the MoH and ensure that both systems efficiently deliver high quality services to CwDs without duplication of efforts.

In engaging with health and (re)habilitation activities, UNICEF Uganda should aim to bring back the geographic coverage and quality of services that used to be delivered by the CBR programmes (when it was funded by NAD). A success factor would however lie within the gathering of social, health, (re)habilitation and education workers together 266.

3.2.3.

Access to Education

Another focus area that UNICEF Uganda should engage with is access to education for CwDs. This right is enshrined in both CRPD Article 24 and CRC Articles 28 and 29. This basic right has also been constitutionalised and legalised in the Ugandan regulatory system. Education

262

Okwera, Albert, Gulu District Council for Disability, Interviewed by Nadège Riche, 2013.

263

Adong, Caroline, National Council for Disability, Interviewed by Nadège Riche, 2013; And Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

264

Bongole, Rose, Ministry of Health (MoH), Interviewed by Nadège Riche, 2014.

Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

266 United Nations Children’s Fund (UNICEF), Research Study on Children with Disabilities Living in Uganda – Validation Workshop, 2014.

265

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda should be a priority because acquiring knowledge is crucial to start anything else in life. The first and foremost battle, which UNICEF Uganda should get involved into, should be on IE and not on SNE because SNE promotes exclusion whereas IE promotes inclusion and is in line with the CRPD provisions. In this respect, the Convention is very clear: “it requires governments to ensure that PwDs have access to ‘an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live’ (CRPD Article 24 (2) (b)). […] It is therefore critical that moves towards integration [and inclusion] are part of a broader strategy encompassing encompassing teacher training, school financing and other measures.”267 In this respect, UNICEF Uganda should again partner with the competent Ministries, meaning the MoGLSD and MoES, and the Faculty of Special Needs and Rehabilitation of the Kyambogo University to create new initiatives or reinforce their programmes and structural capacities to deliver IE to pupils and students with disabilities. UNICEF Uganda should support the Government that must affirm its commitment to IE and develop an inclusive eductaional policy with clear resources ring-fenced to implement the policy. There is a need to establish political leadership and government responsibility for IE in order to provide and deliver services in a well-coordinated, cross cutting and adequately resourced implementation system at all levels through clear guidance and policy.

In pratice, UNICEF Uganda should first support the creation of a seamless and inclusive educational environment welcoming both children with and without disabilities. This should encompass early childhood, formal and non-formal education from pre-primary to secondary level. To date, very few CwDs have joind a ECDC or a kindergarten. Most of them start class directly at primary level. It is thus adviced to establish inclusive facilities where children with and without disabilities can mix and learn together from a very young age onwards. Non-formal and vocational education would also benefit CwDs who mostly drop out after primary school due to a lack of secondary schools providing IE. It would also enable teenagers with disabilities to acquire skills and a means of survival, which would directly tackle poverty issues.268 This also makes sense keeping in mind that “Uganda has the highest youth unemployment in Africa according to the latest figures.”269 Such livelihood activities could consist of one-to-one training of individuals based on their interest. It could also take the form of vocational training in a group 270. These activities could be of various kinds: bee keeping, carpentry, telecommunications, information technology (IT), etc.

The establishment of such inclusive settings requires financial and technical support from UNICEF Uganda. The ECDC, primary and secondary schools or vocational centers, which offer IE for CwDs, should receive a budget in adequation with their goals. There should be an

267

United Nations Educational, Scientific and Cultural Organisation (UNESCO), Education For Al (EFA) Global Monitoring Report - Reaching the Marginalized, 2010, p.201-203.

268

Jawoko, Perry, Gulu District, Interviewed by Nadège Riche, 2013.

Mwesigwa, ‘A. Uganda's unemployed graduates held back by skills gap’, The Guardian, 16 January 2014, http://guides.is.uwa.edu.au/content.php?pid=385139&sid=3156563 (Accessed 22 January 2014).

269

270

Ojok, Simon, Gulu Disabled People Union (GDPU), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda increase in the UPE or USE payments for all inclusive schools. Direct funding for specific items or proportionate to the numbers of CwDs in class could be another option. In addition to specific assistance to IE facilities, all schools should be encouraged to offer an environment suitable to both children with and without disabilities. In that respect, the MoES should provide clear guidelines on how they are supposed to support pupils and students with disabilities. A hard copy of such a guide could be sent to all schools and districts officials. It should be drafted in consultation with children to know what their perspective is. This project could have a module where children with and without disabilities discuss about IE271.

Besides, CwDs should be empowered to go and attend class in suitable conditions. The current school curriculum is not sensitive to the educational needs of CwDs and opportunities for these children are consequently limited and restricted. Consequently, the school curriculum should be revised to take into account the educational needs of all children. There is also an urgent need to implement a policy to provide reasonable accommodation for CwDs in learning institutions. This should include full physical and digital access, the promotion of disability culture among pupils, studends, teachers and administrative staff, individual education plans for all pupils and students, accessible educational and scholastic materials, the availability of assistive devices and support in classrooms and the teaching of SL. The use of innovation, accessible mainstream technologies and assistive devices, which might be required to suit the specific needs of some CwDs, is of particular importance to make a difference in IE settings: “a study of people with limited mobility in Uganda found that assistive technologies for mobility created greater possibilities for community participation, especially in education and employment.”272 In that respect, gobal organisations (such as the DAISY Consortium273 and the World Wide Web Consortium 274) have developed standards to produce an accessible web, accessible mainstream information and communication technologies as well as assistive devices suitable for persons with printed disabilities. This should also be used in the Ugandan context to deliver to CwDs their right to access information, communication (CRPD Articles 9 and 21) and thus education at large (CRPD Article 24).

Finally, strengthening training in IE for current and future teachers is needed to complement these structural changes in the education system. This requires several action lines.

Obligatory IE modules should be integrated in the teacher curricula. Sponsorships of a significant amount to complete the degree at the Faculty of Special Needs and Rehabilitation of the Kyambogo University should be put in place since this will encourage teachers to specialise in IE. Additionally, regular ongoing and locally based teacher training in IE should primarily target teachers who graduated already.

271

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

272

World Health Organization (WHO), World Bank, World Report on Disability. Geneva: WHO/World Bank, 2011, p. 101.

273 DAISY Consortium, http://www.daisy.org/, 2014 (Accessed on 29 May 2014).

274

World Wide Web Consortium (W3c), http://www.w3.org/, 2014 (Accessed on 29 May 2014).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Significant investment is therefore required to develop the understanding and skills of teachers to work in new ways and support continuous development in classroom practices.

Teacher training must reflect this if teachers are to have the attitudes and confidence to teach CwDs. Innovative projects have already taken place and can be inspirational. “Some NGOs and governments, including those of Uganda and the United Republic of Tanzania, have supported ‘itinerant teaching’ approaches, which enable specialised teachers in central primary schools to reach a larger group of pupils in satellite schools, and support and train teachers.275 But developing practice involves more than good undergraduate and postgraduate education. It also includes teachers and their schools in learning from their everyday experience about individual children and sharing this learning within the profession. Experience of IE is a more powerful basis for teacher development than training courses. Teachers often think they need ‘special skills’ to teach CwDs. However, it is generally admitted that, in the majority of cases good, clear, accessible and participatory teaching skills that teachers need to deliver quality education to all children, are effective in including CwDs in learning. “In Uganda, teachers’ attitudes improved simply by having regular contact with CwDs.”276 Learning innovative child-centered strategies will enable teachers to teach a diverse range of abilities and promote active student learning to meet individual student. CwDs need teachers with inclusive attitudes. Teachers are arguably the most valuable human resources available to promote inclusive practices. If they do not believe in inclusion, they can become a major barrier to progress. CwDs also need teachers who are positive role models. As such, teachers with disabilities can be key players in combating discrimination and promoting positive identity in CwDs and breaking down prejudices of CwDs. More than this, they can provide a positive example for parents of cwDs, which can mean the difference between parents sending their child to school or keeping them at home because they see no benefit in an education.

To conclude, the education sector in Uganda has not yet shifted to an IE approach and many challenges remain ahead to deliver access to education to CwDs. UNICEF Uganda is also recommended to engage with unknow topics. For instance, it has been reported that the high level of abuse of CwDs seems to be one of the main reasons for not sending CwDs to school, especially girls with disabilities. This appears a major issue but it has not been researched yet. Protection of boys and girls with disabilities at school should also be part of UNICEF Uganda programmes.

3.2.4.

Social Norms Change and Raising Awareness Campaigns The full realisation of the rights of CwDs requires tackling the stigma and behaviours attached to disability. Discrimination and maginalisation of CwDs are a fundamental problem. Since families and communities lack information relating to disability, raising

275

Lynch, P. and McCall, S., The itinerant teacher’s role in the educational inclusion of children with low vision in local schools in Africa, The Educator, vol. 20, no. 1, 2007, pp. 49-53.

276

Afako R. (ed.), Implementation of inclusive education policies in Uganda - Collaborative research between the Centre of International Child Health and the Uganda National Institute of Special Education, Paris: United Nations Educational, Scientific and Cultural Organization (UNESCO), 2002.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda awareness of the population about the needs and rights of persons and children with disabilities can constitute a first leverage. With the assistance of UNICEF Uganda, the central government could launch a national awareness campaign tackling negative attitudes and stereotypes. This could be run in partnership between local and national Government Institutions, DPOs and NGOs of the Child and Disability Movement and the private sector.

However, given that there are negative social norms relating to disability in Uganda, raising awareness will not be sufficient. Since the attitudes of families and communities are dependent on what others think of persons and children with disabilities and what other think parents or guardians of CwDs should do, the awareness of people is not the core problem. Challenging the social norms will require a community empowerment approach.

Similar initiatives took place already: for example, Raising Voices has implemented projets that aim to challenge the social norms related to children in Uganda 277. Learning from these experiences, UNICEF Uganda should support the development of community-based outreach work. Once more, this should be organised in cooperation with the relevant local and national Government Institutions and organisations of the Child and Disability Movement.

Conclusively, the social norms associated with disability will only be challenged and changed if a combination of means is put in place. Traditional raising awareness campaigns will level up the knowledge of information of communities while community-based outreach work will address the empirical and normative expectations associated with the behaviours of people towards persons and children with disabilities.

3.3.

Conclusion about the section on programmes

To conclude, the challenges discussed throughout this Report call for a strong programmatic response from UNICEF Uganda. The purpose of this section was to provide an overview of the major problems faced by CwDs, identify the focus areas where initiatives are required and describe possible programmatic solutions. However, this research study did not aim to design off-the-shelves –pilot- projects and programmes. UNICEF Uganda should therefore conduct further research and exploratory work to assess the feasibility of programmes targeting CwDs in the various fields relating to disability prevention, health, (re)habilitation, education and disability awareness raising.

Nonetheless, a certain number of success factores have been identified to design and run programmes delivering structural changes for CwDs. Any programmes designed and implemented by UNICEF Uganda should primary aim to empower CwDs. The importance of role models is crucial: UNICEF Uganda should identify successful CwDs who can inspire other CwDs 278. Additionally, the main focus for children

277

Mackie, Gerry, and Moneti, Francesca (ed.), Working Paper: What are Social Norms? How are they Measured?, United Nations Children’s Fund (UNICEF) – University of California San Diego (UCSD) Center on Global Justice Project Cooperation Agreement, 2012.

278 Kafeero, Olive, Chapter 9: A brief Analysis on Children with Disabilities, in A Handbook on Disability experiences and approaches in Uganda, 2010.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda with intellectual and psychosocial disabilities should be on building their capacity to be selfadvocates. Self-advocacy by persons and children with disabilities, especially by people with cognitive and psycho-social disabilities, is indeed the ultimate recognition that every one is able to speak on one’s behalf and make decisions over one’s life. This would also play a vital role in the promotion of disability rights since non-disabled people would be able to recognise the full empowerment of their peers with disabilities. In that respect, learning from and reinforcing the existing project currently run by UPPID is of major relevance 279.

Another interesting aspect could be to work with CwDs and children without disabilities, since part of the problems lies in the negative percepetions and behaviours of communities and other children at school. A successful example is the model of the Child Rights Groups or Clubs. They are community based network supporting children with and without disabilities, their parents or guardians and communities in understanding their human rights as children and advocating for them.

The role of parents of CwDs should not be overlooked either, since they are the primary persons caring for a child with a disability when s/he is young and stays at home. PSGs, meaning groups of parents of CwDs, should be formed so parents and guardians can discuss their problems and be sensitised about the needs of their CwDs. They can also be advised to send their children to hospitals or schools. Once sensitisation and training has been carried out, there should be regular follow up and monitoring to ensure the general welfare of the child. Creating groups of parents of CwDs can easily be achieved by talking to local leaders in villages and by building on those already created by UPPID and USDC. In this respect, it must however be reminded that parents and organisations of parents might tend to stigmatise their own CwD. One of the main problems is the parents’ perception of their grow-up CwD as perpetual “children” and their inability to acknowledge adulthood. There is a contradiction here that needs addressing – i.e. the need to separate the needs of parents from those of their children and the importance of independent self advocacy.

Finally, it is worth underlining that CwDs are a very heterogeneous group. Children have a wide variety of impairments and needs that must be catered for accordingly. Children with severe disabilities will require a more adapated environement while children with mild disabilities will only need ad-hoc support to perform everyday activities. In other words, disability can not be tackled as a single entity but the specific needs of the various categories of impairments should be distinctively addressed. In its efforts and work, UNICEF Uganda should find a balanced approach and target all groups. Indeed, the needs of children with physical and sensory disabilities are easily thought of, while children with intellectual and psycho-social disabilities tend to remain “invisible”.

 Recommendation n°9: Design and run programmes relating to disability prevention, health and (re)habilitation, education, social norms changes and awareness-raising

279

Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

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3.4.

Actively Consult and Involve the Civil Society Organisations of PwDs Operating in Uganda (CRPD Article 33.3) and the Organisations of the Child Movement It is also important to emphasise that all surveys and programmes should be designed, implemented and monitored in close collaboration with all stakeholders working with CwDs. This ranges from local District Unions of persons and of women with disabilities to the national DPOs. Child-rights based NGOs can also be strong allies to UNICEF Uganda.

The Disability Movement is reasonably well structured in Uganda. Because of their relative representativeness of the population of PwDs, DPOs have the most extensive expertise and knowledge of how persons and children with disabilities live in Uganda. Their capacity to reach out to CwDs should be recognised, supported and valued. However, it must be acknowledged that there are no organisations actively involving CwDs in their planning and decision making and the Ugandan DPOs speak on behalf of CwDs rather than enabling them to directly voice their concerns and wishes for their future.

UNICEF Uganda should work with the relevant Ugandan DPOs representing boys and girls with disabilities (e.g. NUDIPU, NUWODU and UPPID). NUDIPU is the national umbrellaorganisation representing all PwDs in Uganda, while NUWODU focuses on the specific needs and rights of women and girls with disabilities. Both organisations aim to represent all categories of PwDs and have a national coverage through the District Unions of PwDs. Their core asset lies in their advocacy abilities to voice the rights of PwDs and mainstream them into the Ugandan regulatory framework. It must, however, be highlighted that both organisations have not to any extent taken on board the perspective of CwDs and their focus is more on the young population of PwDs280.

Such cooperation could be fruitful in collecting statistical information relating to CwDs, among others. NUDIPU currently sets up a database and data collection tool to collect information about PwDs living in Uganda based on information that will come from NUDIPU member organisations. Data should be disaggregated by age, types of impairment, gender and location and the first results should be available in June 2014281. This data must be handled with care because of concerns regarding reliability, consistency and robustness and it will not be possible to use this data for comparison with national statistics produced by UBOS. It might, however, provide rough estimations of the numbers of PwDs and CwDs living in Uganda.

Finally, it is important to consider and include the role of parents of CwDs. Many CwDs are under cared for and under educated because parents do not see value in them and it is the parents who are usually the primary care givers 282 and the first key players in the life of a

280

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

281 Ronald Luyima, National Union of Disabled Persons in Uganda (NUDIPU), interviewed by Nadège Riche, 2013.

282

Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda CwD. UNICEF Uganda should therefore engage with organisations representing parents of CwDs. Currently there is only one such organisation in Uganda, UPPID. UPPID could partner with UNICEF Uganda - the UN body could use the networks of PSGs created by UPPID, while the NGO would be strengthened by being financial and organisational supported by UNICEF Uganda. This would also be in line with the role of self-advocacy as highlighted in the previous section.

For these reasons, UNICEF Uganda should actively involve DPOs, such as UPPID, in all its activities targeting CwDs. This would apply to advocacy work establishing a CwDs friendly regulatory framework in Uganda and to the design and implementation of programmes.

Several types of partnership could be set up between UNICEF Uganda and DPOs. First of all, any relevant organisations for/of CwDs should be included in the national partnership for CwDs that UNICEF Uganda and the MoGLSD are recommended to establish. These organisations could also join the Consortium of organisations applying for grants and funding opportunities together with UNICEF Uganda. The active participation of DPOs is a core requirement under CRPD Article 33.3 and UNICEF Uganda should be a model organisation in its implementation.

In addition to partnering with DPOs, the child rights organisations can be strong partners and allies to UNICEF Uganda. The Child Movement has started engaging with the needs and rights of CwDs and to a limited extent mainstreamed the disability perspective into their core activities. Their expertise of the situation of children in Uganda and networks of national and local partners are complementary to those of the disability movement. UNICEF Uganda could partner with the lead organisations that have established track records in child rights in the Ugandan context (e.g. African Network for the Prevention and Protection against Child Abuse and Neglect (ANPPCAN)) or with the iNGOs that have a track record of working with CwDs living in Uganda (e.g. Plan, Save the Children and War Child). In particular, UNICEF Uganda should seek support from these organisations to proactively engage with and consult CwDs living in Uganda on an ongoing basis.

It must be highlighted that USDC is currently the only organisation voicing the concerns of all categories of CwDs in Uganda. It is however an organisation of adults speaking on the behalf of CwDs. Nonetheless, having been active in Uganda for the past twenty years, the organisation has acquired an in-depth knowledge and expertise on the situation of CwDs and has built a network across the country of organisations and partners working to improve the living conditions of CwDs. For example, USDC has recognised the role of parents and supported the creation and running of PSGs that UNICEF Uganda could use as relay for its own programmes. For this reason, it is critical that USDC partner with UNICEF Uganda to design and implement programmes targeting CwDs in Uganda.

To conclude, UNICEF Uganda should actively consult and involve CwDs using organisations from both the Disability and the Child Movement. Their expertise and networks in respectively disability and child matters should be valued. By partnering with organisations such as ANPPCAN, Plan, Save the Children, USDC, UPPID and/or War Child, among others, UNICEF Uganda could both draw upon new and original ideas and inspiration from the DPOs and NGOs as well as ensure that all laws, policies and programmes are consistent with the needs and rights of CwDs that it is the DPOs’ and NGOs’ role to advocate for.

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 Recommendation n°10: Partner with organisations of the Child and Disability Movement

4. Main Conclusions about the Recommendations In the course of this research, it has been found that the current programmatic approach tends to be fragmented and lack long term sustainability. To remedy this situation, UNICEF Uganda should mainstream the perspective of CwDs in all its programmes and build the capacity of the organisation to work with CwDs. Focus areas of future programmes should cover the living conditions and welfare of CwDs by preventing disability, by ensuring access to health services, (re)habilitation and education and by raising awareness of the communities to fight against stigmatisation and discrimination on the ground of disability.

Empowering CwDs should be at the core of the design and implementation of any programmes and the role of parents, as primary caretaker of a CwD, should be duly acknowledged. All programmes should be designed, implemented and monitored in close collaboration with all stakeholders working with CwDs. This ranges from local District Unions of PwDs and of women with disabilities to the national NGOs of CwDs DPOs (e.g. UPPID and USDC). Child-rights based NGOs, such as ANPPCAN and Plan, can also be strong allies to UNICEF Uganda.

To conclude, a stronger programmatic approach is needed to overcome the barriers to the realisation of the human rights of CwDs in Uganda. UNICEF Uganda must take actions without any further delays and play the central role devolved to a UN Agency to ensure their promotion and protection.

Despite all what has been said in this report, CwDs are first and foremost children. They have “the same needs as all children. They have the same rights as others - among these, the right to life and to the opportunities that flow from good health care, nutrition and education, [as well as] the right to express their views and participate in making decisions.”283 This still awaits realisation for all CwDs living in Uganda.

5. The Ten Key Recommendations in a Nutshell  Recommendation n°1: Actively consult and listen to CwDs on issues concerning them on an ongoing basis  Recommendation n°2: Improve statistical information relating to CwDs in partnership with UBOS  Recommenation n°3: Review and enforce the Ugandan legal and policy frameworks  Recommendation n°4: Increase budget allocations to responsible Government Institutions and earmarking for CwDs in related programmes  Recommendation n°5: Coordinate efforts among local and national Government Institutions

283

European Disability Forum (EDF), http://www.edffeph.org/Page_Generale.asp?DocID=13855&thebloc=32553, 2013, (Accessed on 14 November 2013).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda  Recommendation n°6: Create a National Partnership on CwDs lead by UNICEF Uganda and the MoGLSD  Recommendation n°7: Build the knowledge on the needs and rights of CwDs and strengthen the capacities of key stakeholders and duty bearers  Recommendation n°8: Mainstream the perspective of CwDs in all UNICEF Uganda programmes and surveys  Recommendation n°9: Design and run programmes relating to disability prevention, health and (re)habilitation, education, social norms changes and awareness-raising  Recommendation n°10: Partner with organisations of the Child and Disability Movement

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Part 8: The Bottlenecks Analysis Table to the Realisation of the Rights of Children with Disabilities Living in Uganda In the design, implementation and assessment of all interventions, the active participation and involvement of CwDs should be promoted by all stakeholders.

Table 11: the Bottlenecks Analysis Table

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

ENABLING ENVIRONMENT Discriminatory social towards disability

norms Large misconceptions associated High to disability

Run community awareness-raising campaigns Establish and support PSGs Reinforce the capacities of stakeholders relating to the understanding of the needs and knowledge of the rights of CwDs

Challenging

Improve statistical information: Disaggregation and breakdown of data by: age groups, gender, geographical distribution across the Regions and

Traditional behaviours of discrimination, neglect, abuse and marginalisation of CwDs by communities (e.g. parents, caregivers, families, teachers, Head masters)

Enabling Environment

Enabling Environment

Challenging

Lack of reliable and accurate statistical information to plan policies and programmes targeting CwDs

No exact figure of the –child- High disability prevalence Limited and unreliable data relating to education levels of CwDs No or very poor statistical information or estimations 128

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

outside the education field

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Districts, place of residence (rural vs urban), impairments and conditions, family situations and CwDs with HIV/AIDS Work with Government Institutions (e.g. UBOS, MoGLSD, MoES) to include data collection standards, e.g. data collection tools created by the UN Washington Group

Enabling Environment

Fair domestication of the rights Lack of clear and unambiguous Low of CwDs enshrined in the CRC provisions targeting CwDs and CRPD throughout the regulatory framework, especially in the Children Act and PwDs Act Confusing and sometimes contradictory legal framework 129

Achievable

Advocate for the review of legislation in line with CRPD and CRC provisions Start with the PwDs Act and the Children Act because they outline the legal framework that

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

relating to IE No provisions relating to access to sport and recreational activities Lack of clear provisions regarding the identification and responsibility of duty bearers to guarantee CwDs’ rights

Enabling Environment

Weak coordination mechanism No clear oversight role of the Medium between national Government lead Ministry on disability affairs, Ministries and Bodies the MoGLSD, over other responsible Ministries Overlap between role and powers of Government Bodies (i.e. NCC, NCD, EOC and UHRC) Limited focus on CwDs by the existing structures such as by the NCC or the OVC committees

130

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

defines the rights of CwDs Disseminate relevant laws and policies (e.g. CRC, CRPD, Children Act, PwDs Act) Create an online repository where the Conventions, laws and policies can be downloaded Achievable

Establish a new Task Force on CwDs in the National Steering Committee on Disability, led by the MoGLSD

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Enabling Environment

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Weak coordination mechanism between Government Institutions and other organisations

Low-scale National Disability Medium Forum initiated by the NCC in 2011/12 No overall network among Government institutions and organisations working in the Disability and/or Child Movement

Achievable

Establish a national partnership on CwDs lead together by the MoGLSD and UNICEF Uganda

Lack of proper implementation and enforcement of the provisions relating to CwDs due to insufficient financial resources allocated to programmes

Government Institutions and High Agencies (i.e. MoGLSD, MoES, NCC and NCD) do not have sufficient funds allocated to carry out programmes targeting

Difficult

Advocate for increased budget allocations to responsible Government Institutions and earmarking for CwDs in

SUPPLY

Supply

131

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Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

targeting CwDs and to CwDs responsible local and national Lack of enforcement of available Government Institutions and foreseen expenditures (e.g.

10% of the education budget to be allocated to the education needs of CwDs) Limited earmarking solely for CwDs

132

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

existing programmes Support the establishment of incentive mechanisms targeting SN&IE teachers by partnering with DPOs Advocate for increased budget allocations to Government Institutions (e.g. Faculty of Special Needs Education and Rehabilitation of Kyambogo University) that are responsible for the provisions of assistive services and for the distribution of appropriate scholastic materials for children with different types of disabilities

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Insufficient level of staffing for work with CwDs in all fields (e.g. education, health, CBR) and limited capacities of stakeholders

Supply

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Lack of SNE teachers and support High persons for learners with disabilities Heavy workloads of physiotherapists in District Hospitals leads to discontinuity of provision of health and (re)habilitation services to CwDs No incentives for staff working with CwDs (e.g. SNE teachers, physiotherapists or occupational therapists) National and local Government Institutions have limited human resources: departments delivering services to persons and children with disabilities are under staffed and overloaded by work (e.g. only one physiotherapist per District Hospital, lack of SNE teachers in mainstream schools)

133

Difficult

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Advocate for increased budget allocations to responsible Government Institutions for CWDs Advocate for increased human resources in national and local Government Institutions for CWDs Reinforce the capacities of stakeholders relating to the understanding of the needs and knowledge of the rights of CwDs Disseminate relevant resource material relating to CwDs (e.g. CRC, CRPD, Children Act, PwDs Act)

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Limited awareness of the needs and rights of CwDs among the stakeholders of the Disability or Child Movement

Supply

Lack of proper implementation and enforcement of the provisions relating to CwDs due to lack of clear regulations, enforcement of laws and policies and a lack of by-laws and ordinances Limited accessible environment

The Constitution of Uganda, laws Medium and policies contain provisions defining the rights of CwDs Few regulations or guidelines issued to guide Government Institutions in implementing these laws and policies

physical Limited access to public buildings High including school buildings, classrooms, latrines, sport areas, health centres, hospitals

Supply

134

Achievable

Advocate for the drafting and adoption of regulations enforcing legal and policy provisions Advocate for the use of by-laws and ordinances

Difficult

If relevant, review legislation by mainstreaming the perspective of persons and children with disabilities in relevant legislation (e.g. UNAPD Accessible and IE for CwDs in Uganda project)

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Enforce legislation in place and mainstream accessibility in construction Limited accessible Lack of support services e.g. High communication and information limited provision of SL environment interpreters in schools or hospitals

Supply

No alternative format of the curriculum adapted to pupils and students with disabilities Lack of specific scholastic materials for CwDs (e.g. Braille embosser, mathematical equipment) Lack of assistive devices and technology

135

Difficult

Review and enforce legislation by mainstreaming the accessibility of persons and children with disabilities in relevant legislation Create and revise school curriculum: mainstream disability, adapt if deemed necessary Advocate for increased budget allocations to Government Institutions (e.g. Faculty of Special Needs Education and Rehabilitation of

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Kyambogo University)) responsible for the provisions of assistive services and for the distribution of appropriate scholastic materials for children with different types of disabilities Advocate for the use of assistive devices and technology, especially in an IE settings

Supply

Medium Lack of adequate trainings for Teachers not trained in IE staff working with CwDs Lack of trained physio and occupational therapists in Uganda because high quality trainings are only available from Mulago and Mengo Hospitals

136

Challenging

Design and implement programmes targeting caretakers and staff working with CwDs: Strengthen training in IE for current and future teachers, as well as for health workers

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

DEMAND

Demand

Families lack financial resources Transport cost is too expensive High to take care of CwDs for families to bring CwDs to District or Regional hospitals, health and/or (re)habilitation centres School fees in mainstream schools with a SNE unit are too high for parents of a CwD

137

Difficult

Design and implement programmes targeting CwDs and especially: (a) Identify and assess CwDs living in Uganda (b) Expand the existing social protection programmes lead by the MoGLSD (e.g. programmes providing Income Generating Activities (IGAs) to

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

parents or guardians of CwDs) (c) Capture and share best practices Partner with the MoH and CoRSU to establish programmes delivering outreach health and (re)habilitation services Establish organisations or strengthen the capacities of existing structures advocating for increasing access to outreach services targeting CwDs (e.g. DPOs, PSGs, Child Rights Protection Committees)

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Bottlenecks

Demand

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Low parenting skills relating to Gaps in knowledge of parents on High the rights and needs of CwDs early identification of the disability of their child Lack of information on the needs of CwDs Because of social norms, parents of a CwD do not want to be seen with their child Lack of knowledge of possibilities of support mechanisms and of available assistive devices and technology

Difficult

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Run community awareness-raising campaigns Establish and support PSGs Reinforce the capacities of stakeholders (e.g. parents, families, communities, caretakers, staff of CSOs and NGOs) relating to the understanding of the needs and knowledge of the rights of CwDs Strengthen parents and CWDs to become selfadvocates

QUALITY

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Bottlenecks

Quality

Quality

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Limited geographic coverage of Limited availability of CBR High (re)habilitation services targeting programmes because the CwDs existing projects are centralised in the region of Kampala Lack of direct and specific interventions for children with severe disabilities Limited access to sexual reproductive health services for girls with disabilities Too few outreach programmes relating to health and/or (re)habilitation

Challenging

Low quality of health and CBR Limited capacities of services High services targeting CwDs identifying and assessing the needs of CwDs

Challenging

Shortage in the provision of 140

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Reinforce the geographic coverage and emphasize the perspective of CwDs in the CBR programme of the MoGLSD and the delivery of health services by health centres, District and Referral Hospitals under the supervision of the MoH Establish CBR centres at District level Organise outreach programmes lead by health workers on child health protection measures targeting CwDs in their communities Design and run preventive measures targeting CwDs Support the MoH in producing and distributing

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

assistive, (re)habilitation mobility devices

Inadequate opportunities Quality

and

educational Lack of kindergarten and Early High Childhood Centres welcoming CwDs Lack of study opportunities (e.g. secondary schools or non-formal and vocational centres) after primary school 141

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

assistive and mobility devices: - Support the establishment and ongoing work of the orthopaedic workshops in producing locallydesigned devices - Support the Government Institutions to subsidise medical appliances Challenging

Advocate for the adoption and improvement of the IE policy Mainstream the perspective of CwDs in the Uganda Early Childhood Development

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Bottlenecks

Situation

Impact Ease of of addressing removal bottlenecks (High, (Achievable, Medium, Challenging, Low) Difficult)

Lack of facilities (e.g. class rooms, libraries) for SNE units in mainstream schools under UPE or USE programmes

142

Bottleneck Priority (High, Medium , Low)

Key activities / interventions

Policy Create and revise school curriculum: mainstream disability, adapt if deemed necessary Strengthen training in IE for current and future teachers Increase the number of SN&IE teachers and put in place attractive measures to retain them in their position Establish inclusive Early Childhood Community Development Centres

Bibliography AbleChildAfrica, http://ablechildafrica.org/, 2013, (Accessed 11 November 2013).

Adong, C., National Council for Disability (NCD), Interviewed by Nadège Riche, 2013.

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Annex 1: List of Programmes and Projects Targeting CwDs Living in Uganda The programmes targeting CwDs living in Uganda mainly focus on access to education (Section 1), health and (re)habilitation (Section 2) and sport (Section 3) for CwDs. Some projects are specific to girls and –young- women with disabilities (Section 4) and others address the empowerment and promotion of the rights of CwDs (Section 5). The remaining programmes are multi-dimensional (Section6), mainstream the perspective of CwDs (Section 7) and build the capacity of DPOs (Section 8).

1. Programmes in the Education Sector Table 12: Presentation of Programmes in the Education Sector

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

2011 – Accessible and UNAPD 2015 IE for CwDs in With Parliament Uganda of Uganda, MoGLSD, MoES, Ministry of Works and Transport, District Local Government, Schools administrators, Parents and community, DPOs, Media, PwDs, Service providers, human

The main barrier that prevents CwDs from benefiting from education is the inaccessibility of school facilities and failure of stakeholders to appreciate and implement IE approach in education.

The mainstream schools are not accessible enough to the physically impaired children and children with other disabilities. There is neither SL interpreters in schools nor braille materials to enhance learning of hearing and visually impaired children. The school furniture cannot meet the needs of learners of short

UNAPD took a lead to successfully advocate for inclusion of Accessibility Standards in Building Control Bill which was passed in May 2013 by Parliament of Uganda. The Bill is waiting to be accepted by President to be an Act & it is highly hoped that accessibility standards will be included on the Building Control Act regulations & implementation guidelines in order to further ease the enforcement of these standards among all stakeholders in the construction industry.

Bugiri Kapchorwa Masaka Sembabule

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) rights and advocacy organisations

Key Activities

Outcomes

statures, there is general lack of accessible facilities such as toilets/latrines, ramps, and teachers do not have the skills to handle pupils with special needs.

Therefore this project aims to improved provision of education services which are disability sensitive and meeting the requirement of IE approach.

In order to realize the above, the project advocates for improvements in the procurement of accessible school furniture especially for the learners of short stature, improving accessibility situation in the school settings, availing of elementary education materials such as brailed scholastic materials, braille machines and slates, and training of selected teachers in SL interpretation to improve on their teaching skills.

The following activities are implemented:

UNAPD has successfully engaged officials in the construction unit in the MoES who shared their current construction guidelines so that UNAPD can review & give recommendations for accessibility in the guidelines. The reviewed guidelines will influence construction of accessible schools

The MoES have started incorporating the accessibility standards in their work especially schools inspection. This follows a series of engagements about the review of schools inspectors’ checklist to have accessibility indicators.

In 2011, the Chief Administrative Officer instructed the District Engineer that all physical infrastructures to be constructed must be accessible by PwDs. This is a sign of commitment to create a barrier free environment in the Districts.

Advocacy, networking and lobby Following training of staff of water & 151

Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

meetings Training and awareness raising Training of parents of CwDs’ Support Groups Trust fund/mini grants relating to entrepreneurship/skills development Accessibility auditing and field visits

sanitation programs in accessibility issues, Masaka Local Government headed by the Chief Administrative Officer constructed accessible water borne toilet at the District headquarters to be a model for agencies, contractors, investors & planners on accessibility in schools.

The toilet is complete awaiting commissioning.

20 schools/facilities for schools constructed in the two project districts under the 2012-2013 as well the 2013-2014 financial years have basic accessible provisions for CwDs. Together with other stakeholders, UNAPD has successfully lobbied for the SN&IE Policy which has been completed by the MoES committee and is waiting to be presented to Cabinet.

Training of Parents of CwDs’ Support Groups in Kapchorwa and Masaka Districts.

Many CwDs went back to school.

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Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s) 4 to 10 Global Action May Week “Equal 2014 Right, Equal Opportunity: Education and Disability”

FENU With Action Aid, AYDU, Build Africa, Education Local Expertise Centre Uganda, International Day of African childhood and its Youth (IDAY), Inter Aid Uganda, NUDIPU, Plan, Raising Voices, Share an Opportunity Uganda, Uganda Joint Christian Council (UJCC) UNAB, UNAPD, Uganda National Teachers Trade Union (UNATTU), UNICEF, USDC, World Vision

Key Activities

“The 4th - 10th May is Global Action Week, where across the world, stakeholders campaign to improve education.

[In 2014], the theme is ‘Equal Right, Equal Opportunity: Education and Disability’, and across Uganda we will be using the week to campaign for equal access and quality education for all children with disabilities.

The Forum for Education NGOs in Uganda (FENU) is helping to coordinate action during the week.

Activites included the following ones: Launch of Global Action Week Learners workshops Working with parents Teachers views Organisation self assessments Radio talk-shows MPs visit schools Newspaper features

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Outcomes

Area(s) of Coverage

Ugandawide

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

Promoting accessibility Improved pit latrines Essay competition Debate and petition Engaging Districts National dialogue on special needs education Meeting with Makerere Univer-sity Championship running Rally in Najjembe Community dialogue Rally in Hoima”284 2011 – ‘Let’s get 2014 board’ project285

on NUDIPU

Operation Days Work (ODW) is an initiative by the Norwegian organisation

The project focuses on IE. Twenty primary, secondary, tertiary and vocational schools participate. Some universities are also partner to the project.

Children and young PwDs aged

Several outcomes have already been Kasese and delivered: Rubirizi Over 700 CwDs and young PwDs districts have enrolled in schools. Even more have been identified and are now coming and socialising together.

284

Forum for Education Non-Governemental Organisations in Uganda (FENU), Global Action Week: 4th-10th May 2014 Programme, 2014, p. 2-3.

285

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

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Period Project Name Lead and Donor(s) partner organisation(s) of young PwDs. They organise these ODW and transfer the money to disadvantage d children and young people via NUDIPU.

Key Activities

Outcomes

thirteen to twenty-five are targeted.

NUDIPU has several activities: Youth empowerment activities through peer support to assess and discuss the relevance of IE. Community leader sensitisation about their role and responsibility to ensure that CwDs and young PwDs go to school.

In Kasese district, there was no secondary school for CwDs before, meaning that despite Universal Secondary Education (USE) 2007 CwDs were barred from attendance.

Since 2011, a government secondary school has enrolled students with disabilities: in 2012, 22 students succeeded in their exams. The school mostly admits deaf, blind and physically-impaired children and young people.

Other schools are now also enrolling because they have seen this is possible.

Two associations of young PwDs have been created in the Districts, so they can voice their cause themselves.

Assessment of school environments: organise accessibility audits, explore barriers at schools and propose solutions.

At the national level, NUDIPU lead the National Coalition Committee to advocate for IE. It includes the MoES, UCRNN, FENU and UNAPD.

2012 – Accelerating the World 2013 right to Uganda education fo CwDs

Vision World Vision “World Vision Uganda through Autralia Aboke ADP trained twenty-eight teachers from fourteen primary schools on disability inclusion, constructed a 120 bed capacity dormitory for CwDs in FY 2010, 155

Area(s) of Coverage

“CwDs school enrolment that was Aboke subtwenty-four pupils in 2007 rose to county in sixty-five in 2010 and is currently at Kole District 105 with thirty CwDs in boarding sections.

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Ongoing Five years

Sign Health Uganda Health and Educational Programme

Sign Health International Uganda donors With Specia Schools for Deaf Children

Key Activities

Outcomes

provided beds and desks, eight wheel chairs, fifteen try-cycles and fifteen pairs of clutches for Wigua primary school currently the only unit school in the whole of Kole District provining special needs education that has been able to attract CwDs not only in Kole but also from the neighoring 286 districts.”

[…]

The support provided by World Vision Uganda has helped other stakeholders to regain confidence in the education system for CwDs. […]

The District Education Officer has even posted four teachers for specoal needs education to the school. Initially [there used to] have inclusive leanring for all children but now [there are] classes for SL and other children attend. This has enahcnced communication with deaf children.”287

The programme targets deaf children. It runs the following activities; Preschool education for deaf children Training parents in deafness &

The following outcomes have been Ugandareported: wide National and District PSGs have been formed 250 Children below the age of five are able to read and write

Area(s) of Coverage

286

World Vision Uganda, Complete Child In Commemoration of the International Day of the Girld Child and the Day of the African Child, October 2012 – October 2013, p. 20.

287

World Vision Uganda, Complete Child In Commemoration of the International Day of the Girld Child and the Day of the African Child, October 2012 – October 2013, p. 20.

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

communication Over 200 parents are able to Training teachers in Early Chillhood communicate with their deaf children Development (ECD) Teaching methodologies for deaf 150 health workers are able to communicate with deaf children children.

Over 120 children acquired various vocational skills Children also broke the Guinness World Record on the largest number of people signing and singing at the same time in 2012/2013.

Ongoing Fiveyears

Communitybased education intervention and economic empowerment

Strømme Foundation With ADP, CREAM, COVOID, CRO, SEPSPEL, M2S, CBS PEWOSA, SOCADIDO, CPF, DRUSCILLA

NORAD Kakamissiona iane Eriks Development Partner

The programme targets women, young persons and CwDs. It aims to empower the communities, improve the learning outcomes for children, improve the livelihoods and household incomes and dignify the lives of the target groups.

It is implemented through activities relating to funding of partners and of programmes, capacity building of civil society and advocacy.

All children are meant to access 157

The Strømme Foundation is undertaking a joint study on the causes of school drop outs in partnership with UNICEF. This study will seek the active participation of CwDs.

Northern, eastern, western and central Uganda

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

quality education and economic empowerment.

A favourable environment is created by improving infrastructure, by ensuring that teachers are qualified, by providing text books and desks The parents and/or guardians of all children, including CwDs, are also targeted. They are encouraged to manage micro finance projects to start IGAs, which in turn support children with and without disabilities in school.

Ongoing Threeyear project

288

Child-to-Child IE USDC Project288

DFID via Able Child Africa and Child Trust UK

It aims to increase the enrolment of CwDs in nine primary schools utilizing a child-to-child approach.

The approach taken by USDC is innovative: CwDs and non-disabled children are paired with each other and schools are encouraged to find solutions from within the system at

Naswa Were, Dolorence, Uganda Society for Disabled Children (USDC), Interviewed by Nadège Riche, 2013.

158

In nine schools of the three following Districts: Adjumani Lira Nebbi

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

District level.

The in-class activities are complemented by activities outside the classroom: the purpose is to identify and bring more CwDs in schools. The “School Families” events see one teacher heading a meeting and providing a one-to-one tailor-made solution for each CwD. In the nine schools, parents of CwDs form a group to share their experiences and advocate for the right to education of their CwDs. 2013

Water Aid

DFID

Water Aids has an Equity and The barriers faced by PwDs and Amuria Inclusion Framework which aims to CwDs when trying to access water District provide access to safe water and and sanitation services is removed. sanitation to the poorest and most marginalised groups of people. This includes PwDs. In Uganda, Water Aids supports the building of accessible WASH facilities and toilets in school and at home for persons and CwDs. For

example,

159

Water

Aids

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

constructed accessible latrines in the Wera Primary School and an accessible toilet for a wheelchair user in Bobol village in Amuria District.289 2010 – Self-advocacy in UPPID 2013 education290 With USDC

LEV via DPOD

This pilot project aims to build the capacity of children with intellectual disabilities aged sixteen to thirty two to speak for themselves. From 2010 to 2013, UPPID has organised three gatherings of children with intellectual disabilities in its three regional offices. For a couple of days, children learn from and enjoy basic activities: sport is a good means for people to see children with intellectual disabilities active; music, dancing and drum activities enable children with intellectual disabilities to send messages out to

The impact is quite good because Fort Portal people have now seen the talents of Kampala “these” children. The ultimate Mbale change should consist in parents and communities recognising that their children with intellectual disabilities can do things by their own.

289

Water Aids, http://www.wateraid.org/uk/news/news/mp%20and%20paralympian%20visit%20wateraids%20work%20in%20uganda, 2013 (Accessed on 5 February 2014).

290

Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

the community; handcraft activities demonstrate their talents and enable them to earn incomes.

2011 – UPPID 2013 Education Project291

UPPID

Terres des The project pays for the school fees Hommes and scholastic material of pupils Netherlands with intellectual disabilities.

Accessibility of schools and latrines has been improved with the construction of ramps for example.

Kyambogo University trains teachers in SNE. Some physiotherapists of hospitals in the region have also been trained.

Iganga Jinja

2007 – Unity Project 2011

USAID/ Uganda With MoES

USAID/ Uganda

Ugandawide

291

“USAID supported the SNE and IE Printed copies of the adapted sector in areas including: curricula were distributed to The development of the draft Policy classrooms. in SN&IE; Over 900 teachers received training in in specialized skills of Dyslexia, The adaptation of curricula to SNE; Sign language, Braille reading and The development of training manuals and actual training of writing, Deaf blindness, Specialized

Byamugisha, Isidor, Uganda Parents of Persons with Intellectual Disabilities (UPPID), Interviewed by Nadège Riche, 2013.

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Established a Centre of Excellence in SN&IE in Oyam

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

teachers; Guidance & Counselling.

The development and adaptation of materials for training teachers on HIV/AIDS mitigation for learners with special needs; The development of a Centre of Excellence in SN&IE (at Loro CPTC Oyam district). This Functional Assessment Model is expected to; guide early identification of children’s functional needs for appropriate pedagogical instruction, placements and/or referrals, be a basis for planning for appropriate support services according to individual needs e.g. provision of assistive devices as well as instructional materials, inform teachers on the need for necessary modifications in curriculum and learning

162

Area(s) of Coverage District

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

environment, Be a basis for carrying out research in SN&IE as well as community engagement and advocacy.”292 2004 – Strengthening Norwegian 2007 Child Protection Refugee Council (NRC) Mechanisms through Emergency Education Support to the Northern Districts of Kitgum and Pader

NORAD The project has received 36,000,000 Norwegian Crones (NOK).

“In the context of humanitarian and emergencies particularly relating to Northern Uganda, the NRC has engaged with local authorities to support and promote education of CwDs in their target districts. In Pader, for example, NRC has developed several programs focusing on improving access to quality education and supporting SNE. The main focus of the project involves supporting CwDs through training teachers.

Altogether twenty-seven primary schools in the district are being trained on SL and Braille reading and writing for SNE 293 teachers.”

292

As a result many CwDs have now been enrolled in the schools in Kitgum and Pader and access learning.

Northern Uganda: Kitgum The actual results consist of 181 teachers who were provided with Pader one week training on SL and support to construction needs of NUCBACD. A limited understanding of community about issues faced by vulnerable children, many of whom have been abandoned at NUCBACD, has been identified.”295 Sustainability of projects and programmes over time is major issue that would need to be carefully

Government of Uganda, Ministry of Education and Sports (MoES), Draft Policy in Special Needs and Education Policy, December 2011, p. 11-12.

293

Norwegian Agency for Development Cooperation (NORAD), Mainstreaming disability in the new development paradigm; Evaluation of Norwegian support to promote the rights of persons with disabilities; Uganda country study – Summary, February 2012, p. 18, 19.

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

The programme has also supported assessed for any future initiatives296.

IE and SNE by providing construction support to the Northern Uganda Community Based Action for CwDs (NUCBACD) with construction of dormitories and training teachers on SL. Continued existence of NUCBACD is hanging in the balance given that the school is privately owned and is dependent on donors. NUCBACD is an example of a project which was not originally planned for, but which the NRC embarked upon due to savings as a result of favourable currency rates. NUCBACD has, through the support of NRC, become a boarding school for more than 130 children with a diverse range of possibilities. NUCBACD has received both in‐kind and financial support

295

Norwegian Agency for Development Cooperation (NORAD), Norwegian Refugee Council Review & Appraisal, “Strengthening Child Protection Mechanisms through Emergency Education Support to Northern Districts of Kitgum and Pader”, “Education for Protection and Recovery”, 2008, p.24.

296

Norwegian Agency for Development Cooperation (NORAD), Norwegian Refugee Council Review & Appraisal, “Strengthening Child Protection Mechanisms through Emergency Education Support to Northern Districts of Kitgum and Pader”, “Education for Protection and Recovery”, 2008, p. 35.

164

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

from a wide range of donors and has also been on the list of recipients for emergency food distribution.

Currently NUCBACD is facing serious problems with sustaining the support to the children. The UN World Food Programme (WFP) has phased out its food distribution and a number of other donors are also pulling out. The project does not fall under MoES’ areas of responsibility.

At the time of the review, NUCBACD’s future operation was not at all clear and there was an imminent risk that the children who had placed under the its care, would have to be sent back home to their villages.”294 DANIDA DANIDA 1991 – Education 2003 Assessment and With Government Resource of Uganda

The EARS programme was “a Both programmes EARS/SNE & Ugandawide national decentralized programme UNISE phased out in 2003. on SNE. […] Through DANIDA, the The EARS programme continued

294

Norwegian Agency for Development Cooperation (NORAD), Norwegian Refugee Council Review & Appraisal, “Strengthening Child Protection Mechanisms through Emergency Education Support to Northern Districts of Kitgum and Pader”, “Education for Protection and Recovery”, 2008, p.25.

165

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) Services (EARS)

Key Activities

Outcomes

Government of Denmark channelled the technical and financial support that facilitated the establishment of SN&IE services in Uganda. Funding received from DANIDA facilitated developments in the then original 45 districts. Such support included: Renovation and construction works to establish staff accommodation and offices at the districts; These were referred to as “Educational Assessment & Resource Centres”.

The offices were fully equipped with furniture (for both adults and children), assessment materials and audio logical equipment e.g. screening audiometers.

Procurement of equipment: In addition to audiometers used for screening of hearing loss, other equipment was for classroom work e.g. Perkins braillers. These were distributed to schools and Units supporting learners who are blind.

Transport: All the forty five districts received each a pick–up truck

with government support until 2005.

However unlike Kenya where this scheme continues with government funding, this service is no longer operational in Uganda and CwDs are denied an educational assessment service.

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Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

distinctively labelled EARS/SNE Program. This was meant to ease mobility for outreach programmes by the Assessment and Resource teachers (by then called Assistant Inspectors of Schools in charge of EARS/SNE at the districts.

Training: Workshops/Seminars were conducted including professional upgrading of SNE officers at the headquarters through degree courses abroad.

Institutional Linkages were carried out (locally, regionally and internationally).

It is critical to note that EARS/SNE programme had a sister training programme called UNISE which offered SNE courses ranging from Certificate to Degree level. Through restructuring, UNISE got merged to Kyambogo University as a Faculty of Special needs and Rehabilitation.�297

297

Government of Uganda, Ministry of Education and Sports (MoES), Draft Policy in Special Needs and Education Policy, December 2011, p. 10-11.

167

Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

1998 – 2004 (and it seems it still is an active progra mme)

ABEK is a community-based project pushing for IE: Support children who were not able to access formal primary education due to the semi-nomadic lifestyle of their parents and communities at large School instruction in local language Adapted curriculum with topics relevant to the community’s livelihood, containing instruction on such topics as livestock and crop production CwDs “who are not always not an education priority in their families” 298 were part of the target groups of the project and their needs were mainstreamed in the ABEK

ABEK is considered as a success story: “1, 890 deaf children enrolled in the West part of the Karamoja region. This is an over-achievement of what was a very conservative target. However there is no measure for the performance of these children or of the degree to which they are genuinely included in the school.”299 The recommendations for next steps include: - Target more CwDs - Improve the physical learning environments of ABEK – success- centres with a focus on accessibility for CwDs : take into account needs of

Karamoja region: Kotido Moroto

Alternative Basic Education for Karamoja (ABEK)

Save the Children Norway / Redd Barna With Ministry of Local Government, Districts of Kotido and Moroto (1998) and of Nakapiripirit in 2004

298

Nakapiripiri t

Development Education Consultancy, Final report of the Review of the Alternative Basic Education for Karamoja (ABEK) implemented by Save the Children in Ugandan and REDD BARNA, August 2006, P.13 299

MacDonald, Neil, Gondwana Development Associates, Save the Children in Uganda Mid-term evaluation of strategic plan 2006-2009, July 2008, 5.16.

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

implementation.

For example, physical accessibility of the ABEK centre was thought of.

Area(s) of Coverage

CwDs in classroom and latrines 300 The ABEK Program “currently operates 229 centres in six districts inhabited by the Karamoja people.

The program targets children aged between six and eighteen although younger children are frequently brought along to the centre and adults regularly sit in the classes.

These communities live largely from grazing animals. The animals are frequently moved to find grazing pastures and water. Often, they have to choose either schooling or work over extended periods of time.

This semi-nomadic lifestyle means that the formal systems of government are not as easily accessed.”301

300

Development Education Consultancy, Final report of the Review of the Alternative Basic Education for Karamoja (ABEK) implemented by Save the Children in Uganda and Save the Children Norway/Redd Barna, August 2006, p. 93, 102 and 104.

301

Ministry of Education and Sports (MoES), Non Formal Education Policy for Educationally Disadvantaged People, 2012, p. 5.

169

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) Quality Education Improvement Plan (QEIP)

War Child Holland

Key Activities

Outcomes

Schools are supported to make a QEIP following the method suggested: Assess the current situation and compare it to the ideal situation to provide high quality education to children Identify the gaps

Although this was not foreseen, Lira most schools joining the QEIP programme have identified that they have a gap in teaching to CwDs

Area(s) of Coverage

3 Special Schools in Lira have joined the QEIP programme.

2. Programmes in the Health and (re)habilitation Sector Table 13: Presentation of Programmes in the Health and (re)habilitation Sector

Period Project Name Lead and Donor(s) partner organisation(s) Ongoing Started in 2007

CoRSU CoRSU (Children’s Surgical Rehabilitation Hospital, formerly called Comprehensive

CBM (Germany, Italy, Canada, Switzerland and United Kingdom)

Key Activities

Outcomes

CoRSU was established in 2007 for an initial cost of six million US dollars and has continued to develop and expand ever since. For example, a hostel has been built to enable patients/clients to stay longer after surgery. CoRSU is a not-for-profit

CoRSU can demonstrate several achievements:

170

Many CwDs have received surgery and (re)habilitation services that have changed their lives (e.g. case studies available in CoRSU newsletter and Annual Report)

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) Rehabilitation Services in Uganda)302

302

Smile Train Motivation Uganda

Key Activities

organisation, registered as a nongovernmental organisation in Uganda.

CoRSU provides free surgery and (re)habilitation services for CwDs. Adults with disabilities must pay for the cost of the surgery only (i.e. cost-recovery surgery). Partner organisations or patients/clients are supposed to provide for the other hospital fees. For example, a night in the hospital costs 12 000 Uganda shillings and a night in the hostel (for non-patients) costs 9 000 Uganda shillings.

CoRSU runs several services targeting PwDs, prioritising CwDs:

Outcomes

CoRSU has trained four surgeons (out of six) who practice in Uganda and six physiotherapists partnering with the Mbarara University. CoRSU hosts many visiting surgeons.

In 2013, CORSU handled 3,766 surgical procedures (82% of them concerned children), 2,501 surgery cases, 17,556 night stay (82% of them concerned children), 9,620 night stay Hostel (88% of them concerned children), 1,610 therapy patients (68% of them concerned children), 4,460 therapy sessions (67% of them concerned children), 1,884 nutrition night (93% of them concerned children). CoRSU also CoRSU primarily provides produced 698 crutches (73% of them Orthopaedic and Plastic were for children) and 767 plaster Reconstructive Surgery. The most casts (87% of them were for children). common conditions handled at CoRSU are Club Foot, Bowlegs and Knock Knees, Post Injection

Simpson, Malcolm, Children’s Surgical Rehabilitation Hospital (CoRSU), Interviewed by Nadège Riche, 2013.

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Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Paralysis, Osteomyelitis/Bone Infection and Cleft Lip and Cleft Palate.

The Therapy Services carry out preand post-operative physiotherapy. It also conducts a Cerebral Palsy and Neurological conditions clinic once a week. The unit supports the production and provision of appliances and works closely together with the Orthopaedic Workshop to ensure that clients receive the appropriate devices.

The Orthopaedic Workshop produces prostheses and orthoses at an affordable cost.

The Information, Education and Communication (IEC) training of patients and attendants provides some basic training about nutrition and hygiene as well as disability issues and rights. The programme also raises awareness about the conditions that can be treated at CoRSU, which has in turn yielded a multiplier effect in terms of 172

Outcomes

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

disseminating information about the services at CoRSU. The CBR Department facilitates the (re)habilitation of CwDs in their communities. Its activities include identification, referral and follow up of these children to CoRSU and other facilities for surgery and (re)habilitation.

Outreach Services: CoRSU has identified that there is a gap in access to health and (re)habilitation services between the two Referral Hospitals of Jinja and Mbale. It has therefore decided to deploy outreach services in these areas to address the needs of these communities.

Phoenix Surgical Centre, the private wing at CoRSU, was created in 2012 and it is expected that this service will eventually balance the CoRSU budget.

CoRSU also partners with Government Institutions: CoRSU signed a MoU with the 173

Outcomes

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

Positive results have been seen and assessed: CwDs have gained in selfesteem, some individuals are able to continue their education, new CP children have been identified and CP children are now better identified and recognised. The project tackles a

Ugandawide Gulu Alebtong Kamuli Lira

MoGLSD to enable them to use the existing facilities and staff in Referral and District Hospitals provided that they fund them accordingly.

CoRSU is seeking to formalise its working relationship with the MoES though a Public Private Partnership.

Currently no organisation can refer CwDs and PwDs to CoRSU because CoRSU is not a public hospital. For example by using the framework of such a partnership, CoRSU could train surgeons and therapists who practice in Referral and District Hospitals.

2013 2015 (Based on the success ful

303

Survival Inclusion Disabled Children Uganda (SIDU)303

and COMBRA of With GDPU in

DFID through the Motivation Charitable Trust based in the UK (75%) with

SIDU targets CP children.

A new national project called SIDU has taken over the efforts undertaken under the Hambisela Project, as the needs of CP children all over Uganda are similar.

Ojok, Simon, Gulu Disabled People Union (GDPU), Interviewed by Nadège Riche, 2013.

174

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Hambis ela pilot project)

a requiremen t of 25% cofunding

SIDU aims to reduce child mortality based on the Millennium Development Goals.

SIDU has a budget of forty million Ugandan shillings per year to finance the GDPU activities.

forgotten community (i.e. CP Luwero children) within the disability Tororo community. It also demonstrates that parents have a key role to play in ensuring the survival of their children.

NORAD 700,000 Norwegian Crones or approximat ely 117,000 US dollars in 2013

The Adina Foundation runs a (re)habilitation centre of former abducted children and CwDs in Northern Uganda (Lira).

2013 – Eye health care Lions Norway ongoin programme g

NORAD 367,000 Norwegian Crones or approximat ely 61,000 US dollars in 2013

Lions Norway supports eye health care in Uganda, Eye care infrastructure building, competence building and information dissemination about treatment for eye deceases.

2010 –

NORAD via The programme targets blind and An increase in students in school and Northern

2013 - Adina Ongoin Foundation g rehabilitation centre

IE

Adina Foundation

Operation Norwegian

175

Area(s) of Coverage

Lira

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

2014 (With possibl e continu ation after 2014)

the Atlas Alliance Operation Days Work

partially sighted children and young person, as well as parents, teachers and authorities.

The programme runs activities with regard to IE, education for all and children’s rights in the society. It organises capacity building, training and awareness raising of the target groups and runs advocacy.

conversely a decrease in the drop- and far out rate has been noticed. The eastern communities are aware of the Uganda possibilities and rights of the children and visually impaired children themselves know about their rights. A SNE Policy is to be approved by Government.

DANIDA via DPOD via Spasitika Association Denmark (238,000,00 0 Ugandan shillings)

“NUDIPU addresses the nutritional needs of children with cerebral palsy through outreach visits and nutritional workshops. NUDIPU does not stop at the individual level, as it seeks to expand its impact on the nutritional needs of children with cerebral palsy by utilizing the media to educate the public about nutritional needs, the concept of cerebral palsy, and advocacy and lobbying efforts at both the government and NGO level. NUDIPU remains aware of the challenges facing families with children with cerebral palsy in Uganda, as one of

Below are some of outcomes and best practices arising from the current project: Identification and Mobilization. So far the CP project as reached 245 members that is registered in NUDIPU CP database. This has through the continuous outreach visits to the homes of people with CP Human rights workshop. In this workshop, 20 participants attended that is 8 male and 12 female. 15% of the participants understood and asked questions on the CRPD human rights of PwDs. Some of the youth

Days Work and emergency education funds in Northern Uganda

2012 – Cerebral 2014 Project After a success ful oneyear project held over 20112012.

Association of the Blind and Partially Sighted (NABP) With UNAB

Palsy NUDIPU

176

Area(s) of Coverage

Focus in Kampala, Mukono, Wakiso and Buikwe Districts during the 2012-14 period.

Focus on Kampala and neighbourin g Districts during the 2011-12

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

its goals is to support low-income parents and caretakers on meeting the nutritional needs of children with cerebral palsy. Furthermore, NUDIPU, through its CP project, conducts trainings in care, treatment and social support with an emphasis on good nutrition and physiotherapy of their family members with CP in the city of Kampala, surrounding districts, and villages across Uganda in accessible spaces.�304

with CP participated in role play that period helped them understand more of their rights.

Sensitization workshop of teachers.

This workshop had 15 participants, 5 male and 10 female. In the workshop, teachers appreciated the work of the Youth leaders with CP for organizing the workshop and them making them understand and differentiate cerebral palsy from other disabilities. The teachers called for a bigger workshop where all teachers in Buikwe district should be mobilized to attend so that they can learn about the disability of cerebral palsy and how to help pupils/students with CP in class.

Nutritional workshop. This workshop had 14 participants, 5 male and 9 female. Participants were sensitized

304

Area(s) of Coverage

Global Partnership on CwDs (GPcwd), Nutrition Task Force, A Survey Report on Nutrition Programme Initiatives for Children with Disabilities in Low- and MiddleResourced Countries: A Task Force on Nutrition and Children with Disabilities Project of the Global Partnership on Children with Disabilities (GPCWD; 2012-13) 2012-2013, 2013, p. 8.

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

the best ways of feeding children with CP and why poor feeding can lead to malnutrition and other secondary disabilities to a people with CP. After the workshop, the youth with CP project team did followed up visits to some homes of the participants who were in the workshop and found out that 4 of 14 participants have changed the diet of their children to have at least 3 meals a day containing milk, fruits, vegetables, Passion juice and others HIV/AIDs workshop for youth/children with CP. The workshop had 34 participants, 18 male and 16 female. Youth/children with CP, caretakers and parents were sensitized the importance of HIV testing and disadvantage of not testing for HIV. After testing 4 participants were found positive and linked them to health centres for further assistance and medications.

Physiotherapy workshop. In this workshop, 15 participants attended

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Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

11female and 4 male. This was aimed at sensitizing the parents of children with CP to use the available local materials to be able to offer some physiotherapy services to their children with CP. 2 parents made a corner seat for their children and also do exercise to their children although they are not effective.

Entrepreneurship workshop. 25 participants attended this workshop, 18 male and 7 female it was aimed imparting knowledge and skills to Youth with CP so that they can be able to start their own businesses and become independent without depending on their parents or guardians. 2 Youth with CP started small retail businesses like maize selling and weaving mat to generate some little income for their wellbeing.

Stakeholders’ workshop.

The workshop had 26 participants, 10 female and 16 male. 21 stakeholders from different organizations /

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Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

institutions turned up for the workshop and accepted to work together with the CP project to raise awareness about CP and uplift the plight of people with cerebral palsy.

During the workshop one stakeholder promised to build a rental house for one of the youth with CP. Income generating workshop for parents. Since most of the parents/ caretakers live in absolute poverty, this workshop was carried out to sensitize parents of children with cerebral palsy to start their own income generating activity so that they can generate some income and be able to take care of their child’s needs. The parent raised the issue that they don’t have starting capital and that is the most challenge that limits them to start their businesses at home.

Parents’ workshops. Twenty-six participants were in the workshop, eleven male and fifteen female. The

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Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

workshop aimed at sensitizing the parents of children with CP the concept of cerebral palsy in Buikwe district, 40% of the participants understand the concept of cerebral palsy and the interventions that can be done in the early stage of life of the child with CP. This was witnessed through the questions and reactions from parents during the workshop.

Brochures and Charts. These were designed to disseminate information about the project cerebral palsy and best intervention of cerebral palsy that is physiotherapy. These have been distributed to schools, stakeholders, different organizations and during NUDIPU and national events. Individuals who receive the brochures or charts and have interest in cerebral palsy have been linking back to NUDIPU to get more information about cerebral palsy Media. The project has used the Media more especially Television,

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Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

radio and at less extent newspapers.

The purpose has always been to sensitize the public about cerebral palsy, how useful people with cerebral palsy are and help them understand that cerebral palsy is not witchcraft but a disability that results from brain damage. Many individual with or without children with cerebral palsy have been calling back appreciating our effort to sensitize the public and others coming to NUDIPU to find out how their children with CP can be helped.

BOD committee. The project has helped youth with CP form a committee that initiates decisions.

Through the effort of the committee, the project has acquired a certificate of registration from the NGO Board; the project focuses at helping people with CP have their own National Association of cerebral palsy which they can use to have a unified voice.

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Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

2009 – CBR 2014

The project aims to screen persons and CwDs and provides corrective surgery, physiotherapy and hearing aids.

CBR and corrective surgery has been Iganga the most effective components of the programme. It supported CwDs who now start moving with or without assistive devices. Mobility leads to independent living and participation in all aspects of social life, what is exactly what every person needs.

Ongoing

Integrated GOAL Disabled Women Uganda Activities (IDIWA)

Improving AVSI and AVSI quality of life of Foundation CwDs in Uganda With Gulu Regional Orthopaedic Workshop, Our Useful Rehabilitation Services Mbarara, CURE Hospital Mbale, Katalema Cheshire Home Kampala, Mukisa Foundation Kampala and CoRSU

Trust Fund for Victims, Lilian Foundation, Internation al Federation for Spina bifida and Hydrocepha lus (IF),

The project targets children with It annually supports 200 CwDs. physical disabilities.

This is a holistic programme: it provides for referral, treatment and medical (re)habilitation of CwDs, trains teachers and health workers, promotes IE and supports PSGs.

USAID/ Uganda Private donors

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Area(s) of Coverage

Acholi Kampala Mbarara Mbale

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) Ongoing Fouryear project

IE Campaign

Ongoing Threeyear project

Ka Tutandike Ka Kutandike Deaf Child Uganda Project Uganda World wide Stiching Feides. fundraise locally through Ka Tutandike Uganda social enterprise programme

305

USDC

AJWS

Key Activities

Outcomes

“The objectives are to improve education service provider’s attitudes and practices about CwDs education, increase the coordination of local level service provider’s structures of education in Uganda and to increase CwDs’ enrolment and retention in school.”305 The programme basically targets women venders in urban markets and their children aged zero to five years. It also specifically works with children and young PwDs through existing institutions or groups to enhance livelihoods through social enterprise programmes.

It ultimately aims to increase access to services for ECD for children aged zero to five years and to build the capacity of vulnerable women &

Uganda Society for Disabled Children (USDC), Annual Review April 2012-May 2013, 2013.

184

Area(s) of Coverage Nine districts in Uganda:

An increased numbers of children accessing quality services through inclusive ECD mainstream programme and a decrease in cases of abuse of children have been assessed in the programme areas.

Kamapla Masaka Planned to expand to five other Districts

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

youth.

2012 – Bringing Health USDC 2013 Services Closer to CwDs

Jersey Overseas Aid Commission Medicor Foundation

It aims to provide essential health care support for CwDs through strengthening the local health systems and sensitising families through parent education and income generating seed grants: Hold four PSG meetings Hold five CBR meetings in each District with the participation from key District Departments of health, education, community services and with representation from the political wing Conduct seven outreach clinics (surgical camps) in Arua, Nebbi and Yumbe and thirty-eight CwDs were assessed and screened.

The orthopedic surgical outreach camps in Aura, Nebbi and Yumbe aimed to strengthen the (re)habilitation health services for children with physical disabilities and thirty-six patients were

185

West Nile region of Uganda: Arua Adjumani Nebbi Moyo Yumbe

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

operated. 306 2012 – The Civil Society USDC 2013 Fund project

306

Civil Society Fund Running until 2013 and financed by DANIDA, the Civil Society Fund is a special funding mechanism for Danish CSOs, which supports projects and partnership s with local CSOs in

USDC carried out activities in Soroti District: Twenty-five CwDs were operated during the surgical camp.

The PSGs visited eighty families having a CwD. Forty-seven CwDs received assistive devices.

150 insecticide treated mosquito nets and 150 water purification tables were given to families.

450 CwDs received scholastic materials for two terms in primary school.

Twenty-four CwDs currently in apprenticeship were given start-up toolkits, what included twelve sewing machines, seven carpentry tools, one building and contract laying toolkit and one toolkit for

Uganda Society for Disabled Children (USDC), Annual Review April 2012-May 2013, 2013.

186

Soroti District

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) developing countries.

The fund grants up to 670,000 euros and distributes a total of 10 million euros each year.

2012 2013

307

USDC

Key Activities

Outcomes

Area(s) of Coverage

motor mechanics to support vocational education.

About 450 CwDs benefited from guidance and counselling.

230 households received groundnuts, maize seeds and cassava cuttings to produce their own food and support their CwDs. Twelve Child Rights Clubs were handed oranges in twelve primary schools.”307

Bread for With the support of the Hoima the World Network of Child Rights Clubs (HONECRIC), “USDC organised twenty-one Child Rights Clubs to sensitize communities and District decision makers about the rights of children and CwDs and reduce stigma against CwDs in their everyday life.

Uganda Society for Disabled Children (USDC), Annual Review April 2012 - May 2013, 2013.

187

This has reinforced the role and Hoima capacities of the USDC office in District Hoima District. USDC and Hoima District Local Government signed a MoU in February 2013 and USDC was appointed to the local committee of Orphans and Vulnerable Children’s strategic plan to improve coordination and referral

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

USDC also successfully partnered mechanisms relating to CwDs in the with the Hoima Regional Referral District.” 309 Hospital: the hospital staff has supported outreach clinics, home visits, surgical camps and production of assistive devices for CwDs.”308 Hambisela Hambisela is a Xhosa word which means “make progress”, and is used in the context of progressing towards a goal.

20102011

South Africa The mission of Hambisela is to improve the level and intensity of therapeutically-correct ongoing care received by individuals who have CP in the broad community, to enable them to realize their maximum life potential.

In pursuit of its mission, Hambisela transfers basic therapeuticallycorrect skills to parents and primary caregivers, and also trains suitable individuals from rural communities as Hambisela Facilitators, to transfer these basic skills to parents and

308

Uganda Society of Disabled Children (USDC), Annual Review April 2012 - March 2013, 2013.

309

Uganda Society of Disabled Children (USDC), Annual Review April 2012 - March 2013, 2013.

188

Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

caregivers in their communities.

The primary objective of the project is to improve the exposure of individuals affected by CP to the key treatment necessary to maximise their potential for development.

This is achieved by enabling families and caregivers to provide a basic level of beneficial therapeuticallycorrect ongoing care.

2004 – CBR 2009 programme310

AVSI

IF Since Programme 1998 relating to Early RHF and on- Intervention,

310

AVSI activities consisted of AVSI still has projects in Gulu District Amuru identifying PwDs and CwDs, but does not target PwDs anymore.

Gulu assessing their needs and sending Nwoya them for (re)habilitation if appropriate.

AVSI also trained people in how to make AT and mobility devices.

NORAD via The programme aims to improve In its long-term presence in Uganda East, care for children with Spina bifida (and East and Southern Africa), IF Central and (Norwegian Atlas Southern

Okwera, Albert, District Disability Council of Gulu, Interviewed by Nadège Riche, 2013.

189

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

going

by:

has identified key success factors: Africa - Beginning at the end of the Kenya chain: self-help groups Uganda - Less but better is also cost effective: creative use of medical and local materials - Interdisciplinary approach or - Spina Bifida & Hydrocephalus Interdisciplinary Program (SHIP) IF works with persons with spina bifida and hydrocephalus: some of the first generation adults with spina bifida work as paid staff members in the IF projects. They are role models for children and create hope for parents and youth.

Treatment and Rehabilitation of Children with Spina Bifida and/or Hydrocephalus in the East, Central and Southern Africa

Association for Spina bifida and Hydrocephalus) RBU (Swedish Association for Disabled Children and Youths)

Alliance MyRight (Sweden) Child-Help (Belgium)

-

Strengthening support groups for parents and users by professionalization of organisational structure and improving knowledge level - Improving the sustainability of access to (and knowledge of) medical care and lifelong care for persons with Spina Bifida and Hydrocephalus - Promoting the independence of children and youth and improving their access to education (inclusion) - Promoting preventive measures and access hereto in relation to occurrence of Spina Bifida and Hydrocephalus, advancement of disability, social acceptance, among others.

In practice, this implies the following types of activities:

190

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

-

-

-

-

Support to partner organisations, in particular support to youth and PSPs. Training of workers in care (from the patient to neurosurgeons) Training tools on continence management of the bladder and bowel and wound care Medical supplies Fight against the negative perception on these disabilities

“All IF’s activities are implemented through government and private health and (re)habilitation facilities in collaboration with the district local government, private non-profit health care providers (e.g., missionary hospitals and health

191

Outcomes

Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

centers), and local NGO’s and community-based organisations.”311 Ugandan Sustainable Clubfoot Care Project

A collaborative partnership between the Ugandan MoES, CBM International, and Ugandan and Canadian universities

Canadian International Development Agency (CIDA)

“In Uganda the incidence of clubfoot is 1.2 per 1000 live births. The condition is usually not diagnosed, or if diagnosed it is neglected because conventional invasive surgery treatment is not possible with the resources available.

[The] purpose of [the project] is to make sustainable, universal, effective, and safe treatment of clubfoot in Uganda using the Ponseti method. It built on the existing health care and education sectors and has incorporated research to inform the project’s activities and evaluate outcomes.

The Ponseti clubfoot treatment involving manipulation, casting, Achilles tenotomy, and fitting of foot

311

““The project has resulted in many positive achievements in two years including: The Ugandan MoES has approved the Ponseti method as the preferred treatment for clubfoot in all its hospitals.

36% of the country’s public hospitals have built the capacity to do the Ponseti procedure and are using the method.

798 health-care professionals received training to identify and treat clubfoot.

Teaching modules on clubfoot and the Ponseti method are being used in two medical and three paramedical schools.

Mertens, Pierre, Bannink, Femke Bannink, ‘Interdisciplinary care for children with spina bifida in East and Southern Africa’, Journal of Medicine and of the Person, 2012, p. 4.

192

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

braces has proven to result in a high rate of painless, functional feet (Ponseti, 1996). The benefits of this approach for developing countries are low cost, high effectiveness, and the possibility to train service providers other than medical doctors to perform the treatment.”

1152 students in various health disciplines received training in the Ponseti method.

872 children with clubfoot received treatment, an estimated 31% of infants born with clubfoot during the sample period – very high, given that only 41% of all births occur in a health care centre.

Public awareness campaigns were implemented – including radio messages and distribution of posters and pamphlets to village health teams – to inform the general public that clubfoot is correctable.

The project shows that clubfoot detection and treatment can quickly be incorporated into settings with few resources. The approach requires: Screening infants at birth for foot deformity to detect the impairment.

Building the capacity of health-care professionals across the continuum of care, from community midwives screening for deformity, to NGO

193

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

technicians making braces, and orthopaedic officers performing tenotomies.

Decentralizing clubfoot care services, including screening in the community, for example through community based (re)habilitation workers, and treatment in local clinics, to address treatment adherence barriers.

Incorporating Ponseti method training into the education curricula of medical, nursing, paramedical, and infant health-care students.

Establishing mechanisms to address treatment adherence barriers including travel distance and costs.�312

312

World Health Organization (WHO), World Bank, World Report on Disability. Geneva: WHO/World Bank, 2011, p. 99.

194

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

3. Programmes in the Sport Sector Table 14: Presentation of Programmes in the Sport Sector

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

GDPU 2011 – Inclusive 2014 Community With Kids League through Disability Sport (IDS) project 313

The purpose of the project is not only about playing sport but also about gaining self-esteem and meeting disabled peers to accept one’s own disability. After each game, GDPU organises life skills workshops. For example, a child who used to go around in a wheelchair now uses crutches because he found out that it is healthier for him.

This programme has delivered very positive results: It is popular and more and more CwDs want to attend.

It has shown the communities that CwDs can participate in sport as part of good health and human development.

Comic Relief through the Motivation Charitable Trust

The activities consist of the following: During the weekends of the academic term, adapted sport sessions are organised for CwDs less than eighteen years.

GDPU partners with six schools that have an annex for CwDs and about 150 pupils and students with

313

Ojok, Simon, Gulu Disabled People Union (GDPU), Interviewed by Nadège Riche, 2013.

195

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

disabilities gather every Saturday on the GDPU sports field (right in front of GDPU offices in Gulu city). A complementary bus is organised to transport around sixteen pupils per school while sixteen other individuals commute from home.

2007 – Development 2014 through sport

314

DFID International Inspiration (It is the London 2012 Olympic and Paralympic Games international sport legacy programme.)

“The programme operates at three different levels of intervention: Policy-makers such as governments and sports bodies Practitioners and delivery infrastructure such as schools, sports clubs and coaches Participants such as children and young people.”314

Several outcomes have been Ugandaidentified: wide “15,687 students and pupils have participated in joint projects between Uganda and UK schools.

1,791 young sports leaders and teachers have been trained to mentor young people in 2012.

Sixty-three coaches have been trained in internationally-recognised methodology called TOPS. Twelve of these coaches have qualified to become master trainers Two of the master trainers have

International Inspiration, http://www.britishcouncil.ug/our-work/international-inspiration, 2014 (Accessed 5 February 2014).

196

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

been selected to train as international coaches.

Two special needs schools, Wakiso School for the Deaf and St. Francis School for the Blind, have participated in the programme.

One of the students, Ketty Agaso, from St. Francis School for the Blind, represented Uganda as a Young Leader at the UK School Games organised by Sainsbury’s. She was a volunteer at the event and she received an award for being the most determined young leader.” 315 Once year

National Sports Uganda Blind Sport Association (UBSA) Championship for CwDs316 Uganda Paralympic Committee

Both organisations partner and have sport programmes for children and young PwDs. Once a year, the Committee organises the National Sports Championship for CwDs. Around 200

315

International Inspiration, http://www.britishcouncil.ug/our-work/international-inspiration, 2014 (Accessed 5 February 2014).

316

Luyima, Ronald, National Union of Disabled Persons in Uganda (NUDIPU), Interviewed by Nadège Riche, 2013.

197

Ugandawide 2013: in Kayunga 2012: in Soroti

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

blind and partially sighted children participate.

Ongoing One year

Right To Play Right To Play Kampala Project With UNAB

2010

Sports for Social War Child Holland Internation Inclusion317 (WCH) al Olympic Committee With PLAYABLE (IOC)

317

NORAD via Right To Play does not have specific Right To programmes for CwDs. The CwDs Play engaged in Right To play activities are those who study together with children without disabilities.

The project has tested blind children enrolled in the Mukono Salaama School.

Help children and young PwDs realise that they have a right to play and engage in recreational activities: Identify the needed equipment and renovate existing ones (e.g. the basketball court of GDPU) Raise awareness of the communities about the rights of children and young persons to play sport

War Child Holland, Uganda Annual Report 2010, 2011, p. 14-15.

198

Mukono

In both Districts, children and young Gulu PwDs now participate in sport Lira tournament, leagues and events On the 2010 International Day of PwDs, children and young PwDs presented their quest for recognition and inclusion in sport activities.

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

Train four special needs teachers from Gulu in adapting sports for children and young PwDs Held six special themed matches in Gulu highlighting HIV/AIDS, gender conflicts, school attendance and completion and resolving conflicts Support Lira District Disability Department towards the 2010 National Games and Sports competition for blind children and young persons Eightee nmonth project

Empowering Ugandan Children Through Sports

USDC

DANIDA via DPOD via Disabled Sports Organisatio n of Denmark (DSOD)

The aim is to address the limitations faced by CWDs in accessing sports at school and in their communities. The project will include training workshops for twenty-five coaches and patrons for child rights clubs, weekly sports sessions and a sports competition for both districts.

199

Jinja Luwero

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

4. Programmes Targeting Girls with Disabilities Living in Uganda Table 15: Presentation of Programmes Targeting Girls with Disabilities Living in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

2014 – Sex by Choice – NUWODU and its DANIDA via The project aims to a society where 2016 DPOD Not by Chance! District Union the dignity and the sexual and Sexual and reproductive health of women and (After a Reproductive girls with disability are fully first respected. success Health & Rights for Girls and ful Women and girls with disabilities are Women with project trained on how to have good sex 318 Disability from and how to know their sexual 2009 to desires, how to protect themselves 2013) from rapists and how to avoid sexually transmitted diseases (STD).

NUWODU also partnered with Straight Talk Uganda, Reproductive Health Uganda and the Family Protection Unit to involve boys and girls with disabilities.

2013 – Advocacy

GUWODU

ADD

Outcomes

Area(s) of Coverage

Some positive outcomes have been noted: two weddings of women with intellectual disabilities were celebrated in Kamoli and Mpingi.

Both families and husband and wife to be were happy and willing for the marriage. The number of -forcedweddings of CwD and transmission of STD has decreased.

For the period 2014 – 2016, it is in Buyende, Gomba and Nebbi District.

From 2009 to 2013, it was held in Kamoli and Mpingi Districts.

via GUWODU carried out advocacy This project was successful because

318

Asamo, Helen Grace, National Union of Women with Disability in Uganda (NUWODU), Interviewed by Nadège Riche, 2014. And Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

200

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

2010

NUWODU

campaigns on gender based violence and disability targeted at the judiciary and police offices in Gulu.

It is a litigation and mitigation project.

the case of girls and women with disabilities have now been prosecuted, which was not the case before. For example, in May 2013, a pastor, who raped a girl with a disability and passed on HIV to her, was sentenced to jail for 14 years. It however remains better for the girl or the woman that has been abused to seek support from GUWODU, as otherwise her case might not be heard or taken care of properly.

Africa Mentoring Institute (AMI)

The baseline survey was conducted among Women and Girls with Disabilities of all categories, aged fourteen to sixty years and living in the North and Eastern Ugandan Districts of Koboko, Pader and Kotido. The Study reached out to 240 women and girls with disabilities

“The survey shows that women and girls with severe disabilities like mental health, psychosocial and intellectual disabilities are widely vulnerable to gender based violence due to their inability to resist sexual violence, communicate and report their perprators.”320

campaigns on gender based violence and disability319

2010 - Gender Based NUWODU 2011 Violence Among Women and Girls with Disabilities in Northern Uganda, Koboko, Kotido

319

Area(s) of Coverage

Northern Uganda: Koboko, Kotido and Pader Districts

Luwar, Teddy, Gulu Women with Disabilities Union (GUWODU), Interviewed by Nadège Riche, 2013.

320

National Union of Women with Disabilities Uganda (NUWODU), Gender Based Violence Among Women and Girls with Disabilities in Northern Uganda, Koboko, Kotido and Pader Districts, 2011, p. 1.

201

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) and Districts

Pader

Key Activities

Outcomes

Area(s) of Coverage

and 120 men with disabilities. Four special focus groups were carried out.

5. Programmes Empowering CwDs and Promoting their Human Rights Table 16: Presentation of Programmes Empowering CwDs and Promoting their Human Rights

Period Project Name Lead and Donor(s) partner organisation(s) 2011 – Health, 2015 Education Training CwDs

USDC and for

Governmen t of the Netherlands via Terre des Hommes Netherlands

Key Activities

It aims to improve the health and education of CWDs through media campaigns and increase the capacity of duty bearers to protect CwDs from abuse.

Activities in the field of health, education, socio-economic development and child protection were held: Workshops for leaders and school management representatives about child protection policies, rights of CwDs and SNE.

202

Outcomes

Area(s) of Coverage Kampala Iganga Jinja Masaka

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

UNAD received many contact to receive comprehensive information.

Increased knowledge on SL has been noticed. Several successful small businesses have been established.

Awareness on deaf issues has been raised in the four Districts.

Kampala Mpigi Mukono Wakiso

Radio talk shows The targeted schools are encouraged to set up Child Rights Clubs in, for example, the Good Samaritan School, Kakunyu School, the Aunt Louise School / Misanvu special needs unit, the Bwanda St. Mark VII School for the deaf.

2010 - Empowering The 2014 Young Deaf Foundation Ugandans With UNAD

20122013

Protecting and USDC promoting the rights of disabled children in Uganda project

Signo Operation The Project targets deaf girls and Days Work boys aged thirteen - twenty five – Norway years.

The project aims to empower young deaf Ugandans to fight for their human rights enshrined in the CRPD. The projects provides SL trainings, educational and vocational training.

It supports employment and start-up of small business.

Terre des The project objective is to increase Hommes knowledge about the childhood of Netherlands CwDs and about existing protection services for CwDs. It is implemented through the following activities: 203

Kampala, Masaka, Jinja and Iganga Districts

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

Production of long lasting banners Printing and distributing easy to read materials on SNE and IE policy.

Media campaign on UBC Radio and Radio Mama about rights of CwDs Talk show and speaking disability day about the right of CwDs 2012

Advocacy Learning Centre (ALC) Monitor

“The ALC in collaboration with Monitor publications newspaper in commemoration of the Day of the African Child pubslished an article in one of the Ugandan’s leading dailies, the Daily Monitor, by running a strip in the newspaper calling on children to write in articles on the Day of the African Child theme “The rights of CwDs: The duty to protect, respect, promote and fulfill.”321

321

World Vision Uganda, Child Protection and Advocacy Annual Magazine, Issue 1, 2012, p. 20.

322

World Vision Uganda, Child Protection and Advocacy Annual Magazine, Issue 1, 2012, p. 20.

204

“Godfrey Ssewaya, a primary four Ugandapupil at Nkozi Primary School and wide visually impaired and totally blind child emerger the winner.

The award ceremony received wide media coverage by featuring in the Monitor publications and aired on Uganda Broadcasting Cooperation channel, Uganda’s biggest television network.”322

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

6. Multi-Dimensional Programmes Targeting Children with Disabilitiess Living in Uganda Table 17: Presentation of Multi-Dimensional Programmes Targeting CwDs Living in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

2011 – SCORE project 2016

This is the main OVC service delivery The SCORE project used to have Uganda project funded by USAID/Uganda: educational support meaning providing school fees, scholastic It targets around 100,000 OVC. Very material and uniforms. It has few of them are CwDs. The activities consist of family and however been found out that this is not sustainable and USAID/Uganda economic strengthening, identification and referral of OVC to moved away from this approach. existing health and nutrition Now household who cannot afford programmes, provision of educational expenses for their children are given educational psychosocial support. support for a year only but they get The SCORE project has some specific trainings to find a job or start activities targeting CwDs. Identified income generating activities.

CwDs are referred to CoRSU. AVSI also works with communities to find out, build and distribute assistive devices (e.g. wheelchairs). It also sensitises family and communities about disability rights and the needs of CwDs.

20122013

AVSI

The Disability World Vision assessment of International

USAID/ Uganda

Outcomes

Area(s) of Coverage

“The disability assessment was The disability assessment evidenced Aboke area specifically carried out to address the following: in Kobe

205

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) Aboke Area Development Programme

Key Activities

Outcomes

the needs of children with disabilities in the child protection advocacy programme.

The assessment purpose was, to establish the existing barriers and opportunities faced by persons with disabilities and generate recommendations that improve access to health, education and other services in the ADPs of Aboke, in the districts of Kole to improve the programme design and 323 approach.�

Communities have negative District attitudes towards CwDs. Only 50% of CwDs had access to health facilities.

Assitive aides were inadequate given the number of CwDs and their impairments.

Child labour was more evident among CwDs. Most leaders and beneficiaries were not aware of the lawsand policies targeting CwDs. Relatives and grand-parents are the key person in a child protection mechanism established for CwDs. Only 50% of CwDs participated in decision-making. This percentage os lower than for their non-disabled peers.

The assessment came up with a number of recommendations to tackle

323

World Vision International (WVI), The Disability assessment of Aboke Area Development Programme, April 2013, p. .10

206

Area(s) of Coverage

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

these challenges.

Ongoing

Leonard Cheshire Disability Uganda

Leonard Cheshire Leonard Disability Cheshire Disability in

“There are seven Cheshire Services in Uganda, providing varying levels of residential and rehabilitative services, access to education and vocational training.

Education – The St. Francis School for the Blind is the only school of its kind in Uganda. This Cheshire service caters for 128 visually impaired and 163 blind children, and provides them with a formal education from preschool to advanced secondary level. The children are encouraged to participate in extracurricular activities such as music, crafts, drama and gardening, and some recently participated in the Leonard Cheshire International sponsored ‘Young Voices on the UN Convention’ project.

Economic empowerment – Vocational skills are taught at many of the Cheshire Services in Uganda including at the St. Francis 207

Ugandawide

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Rehabilitation Centre Butiru where both disabled and non-disabled young people are offered work related training. At the Providence Cheshire Home Nkokonjeru, vocational training in a range of skills to the service users.

Health and (re)habilitation – Two of the health and (re)habilitation service providers in Uganda are the Katalemwa Cheshire Home and the Buluba Cheshire Home. The Katalemwa Cheshire Home offers short-term medical (re)habilitation for over 300 physically disabled children who are offered pre- and post-surgery care and referrals to orthopaedic surgeons and hospitals.

The home also has a well-equipped workshop for the manufacture and maintenance of orthopaedic appliances. The Buluba Cheshire Home caters for 33 adults with leprosy who have been rejected by their families. The residents receive medical and social care, and are

208

Outcomes

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

provided with occupational therapy.

They are also involved in a banana plantation project that not only provides the Service with some income but also serves as therapy and recreation. Support is also provided to families who have reintegrated their disabled relatives back into the community.

Community based support – Amongst the Cheshire Services in Uganda that offer community based support are the St. Francis Rehabilitation Centre Butiru, the St. Francis Rehabilitation Cheshire Home and the Katalemwa Cheshire home. All provide a range of other services for individuals with disabilities. The Katalemwa runs Community based services and also provides follow-up services through home-based care and training parents and families on disability management, nutrition and farming.

They also provide AIDS awareness for parents and help formation of

209

Outcomes

Area(s) of Coverage

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

Outcomes

Area(s) of Coverage

parent support groups.”324 Ongoing 2000

Katalemwa Leonard Cheshire Leonard Cheshire Home Disability Cheshire Disability for Rehabilitation Services (KCH)

“KCH was initially set up to provide a family home environment to people who were incurable, sick and physically disabled. Over the years the home has expanded and the emphasis changed from long-term residential care for adults to shortterm (re)habilitation for children with physical disabilities.

In 2000, the National Council of Cheshire Homes was formed to coordinate activities of all the Cheshire Homes in Uganda.

Katalemwa therefore ceased to have responsibility for the other homes and started increasing (re)habilitation services both at the centre and in the communities through collaborations and

324

“Major achievements and Kampala milestones, as well as current areas of work; KCH was honoured and recognised for having made significant efforts to improve the lives of children in Uganda. We were awarded Two Tumaini Awards for being exemplary in providing comprehensive health services and livelihood programmes to CwDs and their families.

KCH was a prize winner of the Larissa 2010 award for Outstanding Service in Protecting, Caring and Providing for CwDs in Africa.

KCH has supported 64,696 CwDs through innovative community based approaches that involved conducting community outreached

Leonard Cheshire Disability, http://www.ugandangodirectory.org/index.php?option=com_mtree&task=viewlink&link_id=192&Itemid=2, 2013, Accessed 13 November 2013.

210

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

partnerships.

KCH focuses on providing medical and social (re)habilitation to CwDs and their families, provision of mobility aids. KCH seeks to promote children’s right to quality education and offer livelihood programmes to enable CwDs and their families to live independent lives. Skills training/ development and empowerment of families through psycho–social and nutritional support are important element of the programme.

While the organization works towards the (re)habilitation of all CwDs in the country, in all settings, emphasis is laid on children from vulnerable and needy families and communities.

Both females and males are given equal opportunity and consideration. KCH also provides appliances to older people.

Outcomes

and home based care.

Successfully mainstreamed HIV/AIDS services in disability work to combat the exclusion of CwDs and their families from accessing HIV/AIDS services.

Promoted participation of CWDs and their families, local district health professionals and counsellors in (re)habilitation and provided an opportunity for communities to understand, own and sustain (re)habilitation of CwDs. KCH is the leading appliance production workshop in the region with well-established appliance production, training and monitoring functions.

KCH also enhanced the capacity of 135 (re)habilitation centres and hospitals through training of staff and provision of therapeutic equipment to support (re)habilitation of CwDs in their We believe in community based approaches, the participation of localities. parents and local communities and KCH continued to impart practical

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in partnership with other organisations in the (re)habilitation process. KCH therefore works in partnership with a range of stakeholders namely (re)habilitation centres, hospitals, local NGOs and CBOs and other line agencies within the (re)habilitation sector.”325

hand skills focused on empowering parents to generate household income and promoted food production aimed at food security and better nutrition to improve the living conditions of CwDs and their families.

Formation and support of parent learning committees in the Central, Eastern and Western regions. The parents groups empower fellow parents to conduct community sensitization, lobbying, advocacy and capacity building in their specific areas.

Promoted IE and formed an Early Learning Centre to support the education of children with learning challenges to prepare them for mainstream schooling.”326

Area(s) of Coverage

325

Leonard Cheshire Disability, http://www.ugandangodirectory.org/index.php?option=com_mtree&task=viewlink&link_id=192&Itemid=2, 2013, Accessed 13 November 2013.

326

Leonard Cheshire Disability, http://www.ugandangodirectory.org/index.php?option=com_mtree&task=viewlink&link_id=192&Itemid=2, 2013, Accessed 13 November 2013.

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Period Project Name Lead and Donor(s) partner organisation(s)

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2013

The programme targets children and young PwDs as well as parents of CwDs. It runs activities relating to advocacy, education, gender, family support, psychosocial support, networking for effective services delivery especially medical services and human rights awareness.

This programme hold several activities: The development of a draft Position Paper for advocacy intervention on Education for CwDs. The provision of legal aid support to families of children discriminated on the basis of their disability or of the disability of their parents.

The conduction of SL training to teachers to provide effective education services to Deaf children.

AJWS AJWS Northern Uganda Children With War Child and with Disabilities GDPU Program

AJWS also runs an adaptive sports program for children and young PwDs in collaboration with War Child Holland and GDPU

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Outcomes

Area(s) of Coverage

Gulu District

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7. Programmes Mainstreaming the Perspective of CwDs Living in Uganda Table 18: Presentation of Programmes Mainstreaming the Perspective of CwDs Living in Uganda

Period Project Name Lead and Donor(s) partner organisation(s) 2011 – Strengthening 2015 National Protection System Programme327

327

PLAN

NORAD

Key Activities

Plan mainstreams disability in its child protection programmes: one of the components of its ‘Strengthening National Protection System’ programme concerns CwDs. Its purpose is to put laws and policies into practice.

Plan has a MoU with the MoGLSD for the implementation of the programme. This component has four main principles underlying its activities: delivering (re)habilitation to CwDs, inclusion in access to social

Senyonjo, Jessica, Adupa, Patrick, PLAN, Interviewed by Nadège Riche, 2013.

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services (e.g. education, health and transport), integration in family life and empowerment of children. It is composed of two core activities targeting CwDs: The CBR aspect focuses on medical (re)habilitation: Plan refers CwDs to Corsu and pays for all costs of the surgery. Around 100 children have been operated on so far and the budget is of 30 million Uganda Shillings.

Plan promotes disability as a social issue and targets parents of CwDs via the 100 parents’ support group existing in Uganda. Through awareness raising, parents of CwDs realise that their children are not sick or cursed. They are also trained to make their own AT because as this is more affordable.

2011 - SUNRISE project 2015

MoGLSD Districts

USAID/ Uganda

There are several types of activities: USAID/Uganda builds the capacities of the staff of the MoGLSD and Districts to support them 215

Uganda

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Period Project Name Lead and Donor(s) partner organisation(s)

Key Activities

accomplishing their mission. For instance, there are not enough – trained- Probation Officers in Districts. USAID/Uganda advocates for the recruitment of more Probation Officers, trains them and facilitates their work to follow up on defilement cases. For example, USAID/Uganda pays some expenses linked to their activities (e.g. reimbursement of transport costs).

USAID/Uganda also facilitated counting and mapping exercises of OVC. CwDs are not specifically tracked over other categories of OVC in the course of such activity.

USAID/Uganda sub-contracted UNICEF Uganda to establish and coordinate the work of a National OVC Steering Committee. It was initially thought of inviting Permanent Secretaries of Ministries but they did not attend these meetings due to busy schedule.

Directors were then invited. The Committee is supposed to meet

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twice a year, but has met three or four time in the past three years.

This activity is now finished.

2014

Including and Mainstreaming Deaf Children in War Child Holland Programmes

Kantalis War Child War Child Holland Holland With Deaf Link, Kantalis Sign Health Uganda and UNAD

2009 – The Inter- Religious 2014 Religious organisations Council of Uganda Uganda (IRCU) project

USAID/ in Uganda

Design an action plan to ensure that the War Child Holland psychosocial programme includes of deaf children: Held a three-day workshop in Kampala to brainstorm Refer deaf children identified in the child protection referral system run in Northern Uganda by War Child Holland to UNAD Unions Fundraise to produce a study researching the impacts of war and conflicts on deaf children

Uganda

IRCU is a multi-religious platform with representatives from all religions and aims to coordinate activities relating to OVC, including CwDs.

Uganda

For example, IRCU has been in contact with a School for the Deaf 217

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where nuns help deaf children and other CwDs. They provide home, food and vocational training. It is all over quite difficult because the School lacks funding but there are a few positive outcomes. For example, a girl with a physical disability was trained in sewing and she now trains persons with and without disabilities in sewing as well.

2013

Youth and child NORAD Right participation 3,4 million PLay Norwegian Crones (or approximately 567,000 US dollars) in 2013

to Right to Play includes PwDs and implements one programme about youth and child participation. The project aims to contribute to decision-makers acting in the best interest of girls, including girls with disabilities, by including them in the debate on key social issues of importance to girls, and acting to dismantle the barriers that prevent them from achieving their full potential.

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8. Programmes Building the Capacity of Ugandan Civil Society Organisations of Persons with Disabilities Table 19: Presentation of Programmes Building the Capacity of Ugandan Civil Society Organisations of Persons with Disabilities

Period Project Name Lead and Donor(s) partner organisation(s) 2010 - Jombola project 2013

UPPID

2008 – Civil Society USDC, 2012 Organisations other (CSOs) Fund CSOs

Key Activities

DANIDA via The project aimed to enable persons Lev with intellectual disabilities and their families to participate in an inclusive society. It mobilise parents and form self-help groups of eight to twentyfive people in thirty-nine districts.

These groups meet once a month to discuss a wide range of topics: how to feed children with severe disabilities, how they can generate incomes, how to advocate for the rights. among USAID/ Ugandan Uganda

The CSOs Fund worked through subgrantees and USDC, among other Ugandan CSOs, benefited from this Fund.

The purpose was to empower CSOs to: -

Offer services in relation to HIV-AIDS, prevention, health 219

Outcomes

Area(s) of Coverage

Parents and communities now realise that children with intellectual disabilities exist and they should be assisted as any other children. They have been accorded dignity like any other people. UPPID has also mobilized many parents and has been recognised as an important partner by NUDIPU.

This programme was not very Uganda successful because only few organisations can now deliver these services and run for any types of grants. One possible explanation is the high competition for little available funding in Uganda.

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

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-

2002 - Omega initiative 2008

The implementing USAID/ partner is Pact Inc. Uganda With NUDIPU and USDC in Uganda

Outcomes

Area(s) of Coverage

and care.

Build their organisational and development capacities to reach a level where they could compete to any donor funding opportunities.

“In Sub-Saharan Africa, the Omega Initiative, with implementing partner Pact Inc., provides funding and technical support through subgrants for a broad range of advocacy, awareness raising, and (re)habilitation services for civilians with disabilities that resulted from war in that region. […] The key elements of the Omega Initiative revolve around the mandate (a) to award, manage, and support subgrants to local and international organizations, including disabled persons organizations; (b) to support its broader program goals; and (c) to provide technical assistance to award recipients and other organizations. Omega has subgrants 220

In 2008, “Omega established a one- Northern person office in northern Uganda Uganda and worked with a local peer Lira District support committee to provide more than sixty small grants to local disabled persons organizations. […]

Since June 2005, the Omega Initiative has piloted a small-grants and technical assistance program within two districts in northern Uganda. The program has provided more than fifty grants—primarily to local disability organizations— totalling more than US$1 million. A peer monitoring mechanism has been established in each district to support and monitor projects for at least one year after the funding

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

Period Project Name Lead and Donor(s) partner organisation(s)

328 329

Key Activities

Outcomes

in Kenya, Sudan, and Uganda.”328

period has ended.”329 The Omega initiative has funded projects lead by NUDIPU and USDC.

United-States Agency for International Development (USAID), Fifth Report on the Implementation of USAID Disability Policy, 2008, p. 18.

United-States Agency for International Development (USAID), Fifth Report on the Implementation of USAID Disability Policy, 2008, p. 18.

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Annex 2: Technical Data Sheet for Each Law and Policy Relating to CwDs Living in Uganda 1. The Constitution of the Republic of Uganda, 1995 Ugandan national and local government institutions in charge

National Government Institutions in charge: Ministry of Justice and Constitutional Affairs Constitutional Court Parliament of the Republic of Uganda Police All Citizens and Government Agencies Local Government Institutions in charge of implementation: The Local Governments are required under the Local Governments Act to monitor and supervise implementation of policies and programmes including the operationalisation of the Constitution of Uganda indirectly (Part III (17) and Part IV (47)).

Content of the Relevant articles and sections: legislation and/or The Constitution of Uganda, 1995, recognizes the rights of PwDs and provides the basis for the enactment of laws and policy development of policies that address their concerns. The following are constitutional provisions which make direct reference

to the protection and promotion of PwDs in Uganda including CwDs: Under the National Objective XVI ‘Recognition of the dignity of PwDs’, the State shall recognize the rights of PwDs to respect and human dignity.

The National Objective XXIV ‘General social and economic objectives’ provides that the State shall promote the development of Sign Language for the Deaf.

Article 35 provides for the rights of PwDs to respect and human dignity. It also imposes a duty on the State to make laws appropriate for the protection of PwDs. There are constitutional provisions that indirectly provide for the rights of PwDs. Some of these include:

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda -

Article 20 provides for the fundamental rights of all individuals and groups to be respected and protected by the State.

Article 21 provides for equality and prohibits discrimination against all persons including PwDs. Article 22 provides for the right to live to all persons.

Article 24 protects all persons and groups from torture or cruel, inhuman or degrading treatment and punishment.

Article 26 provides for the right to property for all persons.

Article 28 provides for the right for fair hearing for all persons in the formal justice system including the disabled persons.

Article 30 provides for the right to education for all.

Article 31 provides for the right to family and found family for all persons.

Article 32 the State shall take affirmative action in favour of marginalized groups including PwDs and shall make laws including laws to establish and EOC for the full fulfilment of this clause.

Under Article 34(2) on children, a child is entitled to basic education which shall be the responsibility of the State and the parents of the child.

Under Article 35 on government, measures to protect and promote rights of PwDs including CwDs should be put in place.

Article 36 provides for the rights of minorities to participate in the judicial making process.

Article 38 provides for the civic rights for all persons.

Article 51(1) says that there shall be a commission called the Uganda Human Rights Commission.

Article 78 provides for the composition of Parliament to include such representatives including representatives of PwDs.

Explanations: The 1995 Constitution of Uganda promotes and protects the Rights of CwDs indirectly as follow; The National objective XVI ‘Recognition of the dignity of PwDs’ recognises the rights of PwDs including CwDs. This is also reflected by Article 35 which calls up on the duty bearer or government to put measures to protect and promote the rights of PwDs including CwDs. Analysis

Achievements: The 1995 Constitution of Uganda has established a good environment for protection and promotion of the rights of children and PwDs. It domesticates both the CRC and the CRPD. 223

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda To operationalise Article 35 of the 1995 Constitution, a number of laws are in place which include; the PwDs Act, 2006 promotes and protects the Rights of PwDs including CwDs to education, health, political representation, among others. The NCD Act, 2004 establishes the NCD which monitors and audits government programmes to ensure that all services and programmes reach out PwDs including CwDs. The Parliament Statute, 1996 provides for five representatives of PwDs in Parliament. The Local Governments Act, 1997 provides for male and female representatives of PwDs at LC 3 and LC 5 and Secretary for PwDs affairs in village and parish Executive Committees. The representatives of PwDs at all levels also represent the voices of CwDs indirectly.

The Constitution of Uganda recognises SL and calls for its development under National objective XXIV ‘General social and economic objectives’. The establishment of Uganda National institute of SNE under the UNISE Act, 1994 has enabled Government to train SL interpreters, teachers and the development of Uganda sign language Dictionary. Sign language teachers and interpreters have supported the education of the Deaf children in Uganda.

The Constitution of Uganda prohibits discrimination on the basis of Disability. This implies that CwDs shall not be denied access to education, health and other services on the basis of disabilities.

All Ugandans including CwDs have a right to life and live as stated by Article 22 of the 1995 Constitution of Uganda. Article 24 protects Ugandans including CwDs from acts of torture, cruel and inhuman or degrading treatment and punishment.

The Government of Uganda established the Education Act, 2008 in line with Article 30 of the 1995 Constitution of Uganda, Article 24 of the CRPD and Articles 27 and 28 of the CRC. It promotes and protects the right to education of all Ugandans including CwDs. All people including CwDs have a right to property what has been enforced by the Succession Act, 2011, and Land Act, 1997.

All persons have a right for fair hearing for all in the formal justice system including the persons and CwDs this is provided by article 28 of the 1995 Constitution of Uganda.

Article 32 of the 1995 Constitution of Uganda has resulted into establishment of the EOC. The Commission acts to equalise the opportunities of PwDs including CwDs to remove the imbalance. Article 51 establishes the UHRC which investigates matters of violation of the Rights of all people including CwDs. The UUHC has a vulnerable persons unit which handles cases of vulnerable people including CwDs. Challenges: The Constitution of Uganda has not yet been translated into easy to read format and not even in a child friendly format especially for CwDs. Recommendations

UNICEF Uganda should popularise CwDs friendly Articles in the Constitution of Uganda to ensure that their needs are 224

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda prioritised in all programmes. This can be done by developing child friendly Information, communication and educational (IEC) materials in partnership with DPOs. UNICEF Uganda should also support the publication of the child friendly and easy-to-read version of the 1995 Constitution of Uganda to make it accessible to CwDs. This should be drafted and designed in cooperation with the MOGLSD and DPOs.

2. The Local Government Act, 1997, Amended in 2001, 2005, 2006 and 2013

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Ugandan national and local government institutions in charge

National Government Institutions in charge: Ministry of Local Governments MoGLSD NCC NCD Local Government Institutions in charge of implementation: District councils, city councils or municipal councils (LC 5) Sub-county councils, city division councils or municipal division councils (LC 3) Parish councils (LC 2) Village councils (LC 1)

Content of the Relevant articles and sections: legislation and/or policy Local Government Act, 1997 Part III - Local Government setup 10. Composition of district councils.

District councils shall consist of— 1. the district chairperson, elected under Part X of this Act; 2. one councillor directly elected to represent an electoral area of a district; 3. two councillors, one of whom shall be a female youth, representing the youths in the district; 4. two councillors with disabilities, one of whom shall be a female, representing PwDs; 16. District executive committee.

1. There shall be an executive committee for each district council which shall perform the executive functions of the council.

2. A district executive committee shall consist of— the chairperson; 226

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda the vice chairperson; Such number of secretaries, not exceeding five, as the council may determine.

3. At least one of the offices of the secretaries referred to in subsection (2)(c) shall be held by a female.

4. The chairperson shall assign one of the secretaries to be responsible for health and children welfare.

17. Functions of a district executive committee.

The district executive committee shall— Initiate and formulate policy for approval of the council; oversee the implementation of the Government and the council’s policies and monitor and coordinate activities of nongovernmental organisations in a district; monitor the implementation of council programmes and take remedial action where necessary; recommend to the council persons to be appointed members of the district service commission, local government public accounts committee, district tender board, district land board or any other boards, commissions or committees that may be created; receive and solve problems or disputes forwarded to it from lower local government councils; 23. Lower local government councils.

(1) A subcounty council shall consist of— 1. a chairperson, elected under Part X of this Act; 2. one councillor representing each parish or part of a parish in the sub-county; 3. two youth councillors representing the youth in the subcounty, one of whom shall be a female youth; 4. two councillors with disabilities, one of whom shall be a female, representing PwDs in the sub-county; and 5. women councillors forming one-third of the council.

(2) A city division council shall consist of— 1. a chairperson, elected under Part X of this Act; 2. one councillor representing each parish or part of a parish in the division; 3. two councillors with disabilities, one of whom shall be a female, representing PwDs in the city division; 4. two youth councillors representing the youth in a city division, one of whom shall be a female youth; and 227

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 5. women councillors forming one-third of the council.

(3) A municipal council shall consist of— (a) a chairperson, elected under Part X of this Act and carrying the title of mayor; 2. one councillor representing each parish or part of a parish in the municipality; 3. two councillors with disabilities representing PwDs in the municipality; 4. two youth councillors representing the youth in the municipality, one of whom shall be a female youth; and 5. women councillors forming one-third of the council.

(4) A municipal division council shall consist of— 1. a chairperson, elected under Part X of this Act; 2. one councillor directly elected to represent each parish or part of a parish in the municipal division; 3. two councillors with disabilities representing PwDs in the municipal division; 4. two youth councillors representing the youth in the municipal division, one of whom shall be a female youth; and 5. women councillors forming one-third of the council.

(5) A town council shall consist of— 1. a chairperson, elected under Part X of this Act; 2. one councillor directly elected to represent each ward or part of a ward in the town; 3. two councillors with disabilities representing PwDs in the town; Part V—Administrative units.

47. County chairperson; parish and village executive committee.

(2) There shall be an executive committee at each parish and village administrative unit consisting of the following— 1. a chairperson; 2. a vice chairperson who shall also be secretary for children welfare; 3. a general secretary; 4. a secretary for information, education and mobilisation;

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 5. a secretary for security; 6. a secretary for finance; […] (g) a secretary for production and environmental protection; (h) the chairperson of the youth council at the parish or village level, who shall be the secretary for youths; (i) the chairperson of the women councils at the parish or village level who shall be the secretary for women and also the public health coordinator; and (j) the chairperson of the organization for PwDs at the parish or village level who shall be secretary for PwDs affairs.

Schedules Second Schedule. Functions and services of the Government and local governments.

Part II - Functions and services for which district councils are responsible, subject to article 176(2) of the Constitution and sections 96 and 97 of the Act include but are not limited to— Functions and services for which district councils are responsible include— 7. Aiding and supporting the establishment and maintenance of schools, hospitals, libraries, art galleries, museums, tourist centres, homes for the aged, destitute or infirm or for the orphans, and providing bursaries to assist in the education of children of persons residing in the district, making donations to charitable and philanthropic, welfare, youth, PwDs, women and sports organisations.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Explanations: The Councillors and Secretaries for PwDs Affairs voice out the issues for PwDs, including CwDs, at all levels of local governments.

PwDs are represented by one female and one male Councillors in Local Councils 3 (LC 3) and 5 (LC 5) which are elected position. The gender approach is considered in the representation of PwDs at LC 3 and LC 5 in terms of two representatives of PwDs of which one must be female.

The District Executive Committee is composed of one Secretary for health and children welfare who is selected by the Chairperson of the district among the elected councillors of the district. He or she ensures that programmes reach out to children including CwDs. The parish and village Executive Committees have a Vice-Chairperson who is also the Secretary for children welfare. These ensure that the issues of children are given high priority. The Chairpersons of LC 1 and LC 2 appoint the Secretary for PwDs affairs from the Chairperson of local disabled peoples’ organisation or association at that level. The Secretaries for PwDs Affairs at this level represent PwDs in decision making. It can be noticed that local DPOs have a very strong power and hence responsibility. These ensure that the government and non-government programmes such as health, education, sports and others reach out to CwDs through monitoring and planning for their respective administrative units. CwDs benefit indirectly from the general education, health and sports services provided at the parish and village levels.

The District Councils (LC 5) perform a number of activities to ensure that CwDs benefit directly and indirectly from the services provided. The activities performed by the District Councils include the following; Initiate and formulate policy, oversee the implementation of the Government and the Council’s policies and programmes. The District Councils also monitor and coordinate activities of NGOs in a district; aid and support the establishment and maintenance of schools, hospitals, sports facilitates among other. Some districts have provided bursaries to assist in the education of children of persons residing in the district; this also benefits CwDs. The two councillors representing PwDs support the District Councils in carrying out monitoring and have a watch dog role to ensure that these services reach out to CwDs. The male and female representatives of PwDs at sub-county level (LC 3) present the issues of PwDs in decision making and developing development plan at that level. They are also responsible for monitoring policy and programme implementation at that level to ensure that they take care of the needs of PwDs including CwDs. Analysis

Achievements: Challenges: 230

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Limited funding limits fulfilment of the mandates of the district or local governments at all levels to provide education, health and other services to PwDs including CwDs. Low local revenues, which constitute about 5% of local government budgets, pose a challenge of operation and maintenance of investments. There is little discretional funding available to local governments, most of the funds are conditional grants and on sector basis 330.

Recommendations Support capacity building on budget advocacy as well as on monitoring and evaluation among the councillors representing PwDs at LC 3 and LC 5 to monitor and audit local government programmes to strengthen inclusion of CwDs’ issues in the district development plans and improve service delivery to CwDs. Indeed, representatives of PwDs at LC 3 and LC 5 have limited capacity to monitor and audit government and nongovernmental programmes because of limited skills and low levels of education. This has sustained limited access to health, education and other services to PwDs including CwDs. This will also strengthen local government institutions that exist to equalise the opportunities for PwDs including CwDs. When adequate budget allocation are made and with strong monitoring of implemented government and non– governmental programmes is in place then improved service delivery for CwDs will be realised progressively.

3. The National Development Plan 2010/11 – 2014/15 Ugandan national and local government institutions in charge

National Government Institutions in charge: National Planning Authority MoFPED Local Government Institutions in charge of implementation: District Department of finance and planning

Content of the Relevant articles and sections: legislation and/or Chapter 2 - Situation Analysis policy

2.1 Macro-economic Performance

330

Bitarabeho, The Experience of Uganda – Local Government’s Role as a Partner in the Decentralization Process to Strengthen Local Development, Bitarabeho, Kampala, 2008.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 2.1.4 Social Sectors 66. [‌] The social vulnerabilities are generally associated with demographic characteristics such as age, disability, unemployment, ethnic minorities and other characteristics such as poverty and disasters. The UNHS 2005/06 report reveals that more than 2.1 million vulnerable children, representing 13.7 per cent of young people below 18 years were under the care of older persons, putting a lot of stress and further impoverishing them. About 1.9 million people (7 per cent of the population), live with disabilities and about 7.1 per cent of older persons have access to pension, of whom 60 per cent are male.

Chapter 3 - The Strategic Direction 3.3. Principles of the Plan 3.3.5 Balanced Development 127. The other dimension of equity is promotion of gender and human rights. The NDP follows various international conventions and resolutions that promote equal opportunities and enjoyment of human rights for both men and women. Gender, disability and human rights mainstreaming are a core part of the planning process.

Chapter 7: Social Sectors 7.3. Education and Sports 7.3.2 Constraints to Performance of Education and Sports Sector iv) Social and cultural practices, attitudes and perceptions which affect the performance of the sector. Although the cost factor appears to be the most important for boys, girls drop out of school due to teenage pregnancy, sexual harassment and early marriages while for boys indifference to education is a key factor. In addition, a significant number of girls help with household chores. There is limited access to education for marginalized groups including CwDs and those in post conflict areas.

7.3.3 Objectives, Strategies and Interventions Primary Education Primary Education 557. Objective 1 - Increase access and equity of primary education for girls and boys.

Strategy 1: Reduce costs of education to families.

Intervention Description i) Continue with the implementation of compulsory UPE by providing capitation grants to cover school costs.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda ii) Adopt and implement a differentiated allocation formula for capitation grants to schools that takes into consideration the differences among schools and the communities they serve so as to realize an improved allocation of the capitation grants. In addition, a budget line will be allocated within the UPE capitation system for specialized equipment, facilities and materials for CwDs. Strategy 2: Support programs targeted at disadvantaged children and the youth.

Intervention Description i) Collaborate with NGOs to implement special projects for disadvantaged and marginalized groups and integrate NGO staff into the district establishments and provide corresponding wage bills. ii) Recruit and train more Special Needs Education (SNE) teachers to build capacity for provision of Special Needs Education and IE in the Local Governments. iii) Provide hardship allowances to teachers in hard to reach, hard to stay and conflict areas to increase their level of motivation and retention.

Strategy 4: Expand and improve primary school infrastructural facilities.

Intervention Description iii) Make School Facility Grant (SFG) flexible enough to accommodate the diverse infrastructural needs of schools in conflict areas and especially those with special needs requirements.

Secondary Education 560. Objective 1 - Increase access and equity in secondary education.

Strategy 1: Reduce costs of secondary education to families.

Intervention Description i) Continue with implementation of the Universal Secondary Education (USE) program.

Strategy 2: Expand, equip, and improve secondary school facilities.

Intervention Description i) Continue with construction of “seed secondary schools” in sub counties where there are none and in districts where the need is great. All schools will be constructed on the principle of inclusiveness to ensure that they have accessible physical infrastructure to take care of concerns for students with disabilities.

Strategy 3: Improve equity in the participation of girls, students with disability and needy students.

233

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Intervention Description i) Implement targeted bursary schemes for girls, students with disabilities and needy students. iii) Enforce the policy of IE to reduce the costs of educating children with special needs in separate institutions and enable them to easily associate with other normal children. This will also enhance their life skills. iv) Construct and equip regional secondary schools for children with severe disabilities to enable them gain access to formal education.

561. Objective 2 - Improve quality of secondary education.

Strategy 1: Strengthen the teaching force.

Intervention Description i) Improve the teacher training (pre-service and in-service) to enhance the competency of secondary school teachers to teach effectively; through training and continuous professional development. It is expected that guidelines for in-service or pre-service training will be used to motivate more teachers to enrol for special needs education. ii) Establish TDMS for secondary education as a delivery mechanism for institutionalized teacher development and professional support for teachers, head teachers and education managers. iii) Develop a new secondary teacher training curriculum that is focused on improvement of instructional skills for teachers in an IE system. vii) Recruit and train additional Special Needs teachers and guidance counsellors.

562. Objective 3 - Improve effectiveness and efficiency of secondary education.

Strategy 1: Accord high priority to workforce competencies and further Education.

Intervention Description i) Review secondary education curriculum to prioritize competencies with a broader application in the areas of effective communication, understanding of abstract concepts, numerical skills solving semi structured problems by formulating and testing hypotheses; and ICT. ii) Construct laboratories for science and ICT as well as libraries to create a firm basis for acquisition of productive and employable knowledge and skills. The infrastructure will be made accessible to PwDs (PwDss) and specific computer packages for students with visual impairment procured and installed in the laboratories.

Strategy 2: Make more efficient use of teachers/instructors’ and learners’ time, and other resources.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda iv) Redeploy teachers from schools where there is a surplus to those where there are deficiencies. Schools with few or no special needs teachers and female teachers will be given priority in improving staffing levels.

Business, Technical, Vocational Education and Training (BTVET) 563. Objective 1 - Increase access and equity of BTVET. Strategy 2: Improve equity in the participation of girls and needy students.

Intervention Description i) Target grants to BTVET institutions in more needy areas. ii) Institute a bursary scheme for eligible girls and needy students. iii) Take affirmative action for girls, needy students and students with special needs in the war-ravaged areas. iv) Enforce IE policy in the BTVET sub sector to reduce the costs of educating children with special needs.

Special Needs Education (SNE) 574. Objective 1 - Enhance equitable access to education and sports at all levels.

Strategy 1: Policy development and review.

Intervention Description i) Appraise the current policy framework in order to recommend necessary solutions to challenges. This is expected to institute relevant and operational policy framework. ii) Formulate and operationalise new policies as well as plans and guidelines.

Strategy 2: Carry out advocacy and awareness creation.

Intervention Description i) Develop an advocacy strategy for SNE. ii) Sensitise stakeholders to enhance stakeholder participation. iii) Produce and distribute copies of approved policies.

Strategy 3: Build capacity for SNE. Intervention Description i) Review the various curricula to integrate SNE issues.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda ii) Enhance training of SNE teachers, head teacher and the community (Pre-service and in-service).

7.5. Health and Nutrition sector: 7.5.2 Constraints to the Performance of the Health and Nutrition Sector (ii) Inadequate capacity to deliver the Uganda National Minimum Health Care Package (e) Injuries, Disabilities and Rehabilitative Health Understaffing, Inadequate support to orthopaedic workshops, low priority accorded to disability at all levels and challenges of coordination of many different stakeholders with varying interests.

7.8.3 Objectives, Strategies and Interventions 666. Objective 3 - Expand social protection measures to reduce vulnerability and enhance the productivity of the human resource.

Strategy 1: Diversify and provide comprehensive social protection measures for the different categories of the population.

Intervention Description Strengthen the capacity of stakeholders in human rights promotion, protection and reporting. ii) Strengthen the Equal Opportunities Commission (EOC) to ensure affirmative action is implemented by the various sectors to enable vulnerable groups effectively participate in the development process. iii) Empower marginalised and vulnerable groups to effectively participate in development initiatives. iv) Strengthen technical capacity in disability mainstreaming and policy analysis to facilitate the integration of disability needs in policy, development programmes and projects as well as in infrastructure designs.

668. Objective 5 - Ensure respect and promotion of human rights and dignity.

Strategy 1: Strengthen the systems for promotion of human rights and prevention of human rights abuses.

Intervention Description Strengthen the capacity of stakeholders in human rights promotion, protection and reporting.

Strengthen the Equal Opportunities Commission (EOC) to ensure affirmative action is implemented by the various sectors to enable vulnerable groups effectively participate in the development process.

Empower marginalised and vulnerable groups to effectively participate in development initiatives.

Strengthen technical capacity in disability mainstreaming and policy analysis to facilitate the integration of disability needs in policy, development programmes and projects as well as in infrastructure designs.

Chapter 8:Enabling Sectors

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 8.2. Justice Law and Order sector (JLOS).

8.2.2 Constraints to the Performance of the Justice, Law and Other Sectors (JLOS) (vi) Long physical distance to service institutions and technical barriers related to gender, disability and poverty.

8.11.3 Objectives, Strategies and Interventions 800. Objective 5 - Ensure that all national plans, sectoral & LG Plans are sensitive to the plight of special interest groups.

Strategy 3: Strengthen capacity for mainstreaming cross cutting issues into National, Sectoral and LG Plans.

Intervention Description i) Strengthen capacity for Gender, disability, HIV/AIDS and Human rights mainstreaming in MDAs, LGs and civil society plans and budgets. ii) Integrate Gender, disability, human rights and HIV/AIDS in the annual sectoral and LG plans and budgets.

Explanations: The NDP is a follow up to the Poverty Eradication Action Plan (PEAP) 2004/05-2007/08 and NUDIPU successfully contributed to its elaboration331.

The NDP covers the fiscal period 2010/11 to 2014/15 and stipulates the country medium-term strategic direction, development priorities and implementation strategies. In line with the National Vision Framework, six five-year NDPs will be implemented of which this is the first. The theme of this NDP is “Growth, Employment and Socio-Economic Transformation for Prosperity.” The thrust is to accelerate socio-economic transformation to achieve the National Vision of a transformed Ugandan society from a peasant to a modern and prosperous country within 30 years. 332 “The NDP is organized around four sector clusters: primary growth sectors, complementary sectors, social sectors and enabling sectors. Primary growth sectors constitute sectors and sub-sectors that directly produce goods and services. Complementary sectors comprise sectors and subsectors that provide institutional and infrastructural support to primary growth and other sectors. Social sectors comprise those sectors and sub-sectors that provide services required to maintain a healthy and quality population, and human resources for effective engagement in rewarding economic activities.” 333

331

Katende Phoebe, Hon. Ndezi Alex, Batesaki Barbara, Mwesigye James, Dr. Nganwa Alice, A Handbook on Disability experiences and approaches in Uganda, 2010.

332

Government of Uganda, National Development Plan 2005/06-2009/10, p. 1.

333

Government of Uganda, National Development Plan 2005/06-2009/10, p. 6.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Answers to the needs of CwDs are visible under the education subsector of the social sector. Limited access to education for marginalised groups including CwDs is one of the challenges of the education sector that has been identified. Several aspects relating to primary, secondary and BTVET education for CwDs are addressed in the NDP. Accessibility in the education environment is emphasized. The NDP requires all schools to be constructed on the principle of inclusiveness to ensure that they have accessible physical infrastructure for pupils and students with disabilities. Budget vote and the School Facility Grant (SFG) should be allocated to support accessibility of buildings and materials for pupils and students with disabilities to enable them access primarily, secondary and business vocational and technical education in Uganda. In addition, a budget line is supposed to be allocated within the UPE capitation system for specialized equipment, facilities and materials for CwDs (Paragraph 557). For students with severe disabilities, government is required to construct and equip regional secondary schools for children with severe disabilities to enable them gain access to formal education (Paragraphs 560 and 563).

Besides, the NDP promotes enhancing equitable access to education by training SNE teachers in primary, secondary and BTVET education level (Paragraphs 557 and 574).

To increase access and equity to secondary school education and BTVET, the NDP calls for instituting bursary schemes for students with disabilities, especially girls with disabilities and “students with special needs in the war-ravaged areas”.

The NDP also plans the drafting of an IE policy in the BTVET and secondary school education sub sector to reduce the costs of educating children with special needs.

The NDP has also evidenced the need to set up a policy framework that promotes and enables access to IE. Advocacy strategy and capacity building activities should be developed to support awareness raising among stakeholders about IE (Paragraph 574).

In the health sector, the NDP highlights the understaffing and inadequate support given to orthopaedic workshops. Overall, disability is not given priority. This affects access to health and (re)habilitation services for CwDs (Paragraph 612).

The NDP highlights the need to protect and promote the rights of special interests groups through strengthening the capacity of stakeholders and institutions in human rights promotion, protection and reporting. Empowering vulnerable population to participate in decision making is also underlined. Despite the focus on special interest groups as mentioned above, the NDP does not refer and prioritise the needs of CwDs in all above interventions (667 and 668).

The NDP refers to and include the principles set in various international conventions including the CRPD that promote equal opportunities and enjoyment of human rights for both men and women with disabilities. Gender, disability and human rights mainstreaming are a core part of the planning process (127).

Analysis

Achievements: The NDP follows various international conventions and resolutions that promote equal opportunities and enjoyment of human 238

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda rights for both men and women with disabilities. Gender, disability and human rights mainstreaming are a core part of the planning process. The NDP highlights promotion and protection of the Rights of special interest groups (641, 666, 668 and 800).

The NDP calls for the drafting of a policy on IE to enable CwDs access education at all levels (paragraph 557). A draft is now at Cabinet.

It is too early to see the impact of the NDP since it is now three years. It is only the education subsector of the social sector that addresses the issues of CwDs. It is difficult also to find the CwDs development related indicators and targets. This means issues of CwDs are not prioritised in the NDP. Challenges: Recommendations

UNICEF Uganda should support the active consultations of organisations representing CwDs, parents of CwDs and PwDs in the development of the next NDP. This is the only way forward to include programmes responding to the needs of persons and CwDs living in Uganda. The review has started and recommendations and views can be received by the National Planning Authority until September 2014. The next NDP should mainstream disability and prioritise the needs of CwDs in all interventions related to in particular access to education and health and (re)habilitation services.

4. The Persons with Disabilities (PwDs) Act, 2006 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoGLSD Ministry of Justice Uganda police NCD Local Government Institutions in charge of implementation: Department of Community Development of District District Councils for Disability

Content of the Relevant articles and sections: legislation and/or Part 1 — Preliminary

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda policy

2. Interpretation "Disability" means a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environment barriers resulting in limited participation; "Minister" means Minister responsible for Disability Affairs; "PwDs" means PwDs. 3. Objects of the Act The objects of the Act are— (a) to promote dignity and equal opportunities to PwDs; (b) to develop and promote the participation of PwDs in all aspects of life as equal citizens of Uganda; (c) to encourage the people and all sectors of government and Community recognize, respect and accept difference and Disability as part of humanity and human diversity; (d) to eliminate all forms of discrimination of PwDs on ground of their disabilities; (e) to encourage all sectors of government and community to Promote and include disability issues into all economic, Political and social development policies and programmes; (f) to promote positive attitude and image of PwDs as capable and contributing members of society, sharing the same rights and freedoms as other members of society.

Part II - Right to quality education and health 5. Education Government shall, promote the educational development of PwDs through— (a) Encouragement of IE; (b) The formulation and design of educational policies and Programs that promote the special needs and requirements of PwDs; (c) The formulation of policies that give CwDs access to relevant education at all levels paying particular attention to the requirements of the girl child and children in rural areas; (d)

the establishment of special schools and units, where IE is not possible, with curricula designed for different

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda disability conditions; (e) the inclusion of a module on teaching children with special needs in the curricula of teacher training courses; (f) the provision of adequate training for special teachers and in service training for current teachers in mainstream schools to cater for the educational development of PwDs; (g) the provision of learning instructional materials and assistive devises suitable for learners with special needs; (h) the enforcement of recruitment and retention of special education teachers in all schools and institutions; (i) structural and other adaptations of all educational institutions to the needs of PwDs and promotion of specialized institutions that facilitate research and development of their education; (j) the commitment of not less than 10% of all educational expenditure to the educational needs of PwDs at all levels; (k) the provision of assistive services during examinations including giving extra time suitable for students with special disability needs.

6. Prohibition of discrimination from educational services (1) A person shall not discriminate a person with disability to deny him or her educational services on the ground of his or her disability.

(2) A person shall discriminate a person under sub section (1)— (a) if he or she refuses or fails to accept an application for admission in an educational institute by a qualified person because of that person's disability. (b) if the terms or conditions of admission to his or her educational institution excludes PwDs; (c) by denying or limiting access to any benefit or service provided by the educational institution to a student with a disability; (d) by expelling a student because of his or her disability; (e) by subjecting a student with disability to any other unfair treatment, relating to his or her disability.

(3) The provisions of this section shall not apply to a person denied admission to an educational institution established primarily for students who have a particular disability where that person does not have that particular disability.

7. Health (1) PwDs shall enjoy the same rights with other members of the public in all health institutions including general

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda medical care.

(2) The purchase, importation, transfer or gift of health materials or equipment relating to disabilities shall be exempted from tax, duties, surcharges or levies.

(3) The Government shall ensure that— (a) sign language is introduced into the curriculum for medical personnel; (b) interpreters are included in hospital organizational structure; (c) labels on drugs are pre-brailed.

8. Special health services The Government shall promote special health services required by PwDs including— (a) providing access to reproductive health services which are relevant to women with disabilities; (b) enforcing user friendly hospital materials, for use by PwDs visiting hospitals: (c) encouraging population based public health programmes relevant to PwDs. 10. Measures of rehabilitation The Government shall— (a) Adopt measures of rehabilitation to help persons with disability regain functional ability to enhance participation In social and economic life; (b) Promote the research, exploration and application of new rehabilitation technology so as to provide more effective rehabilitation service for PwDs; (c) Establish medical rehabilitation departments or sections in hospitals, special institutions of rehabilitation and carry out clinical practice and training, scientific research, personnel training and work of technical guidance in the field of rehabilitation; (d) Provide various forms of technical training for personnel Encaged in rehabilitation work. Popularize knowledge of rehabilitation among PwDs, their family members, relevant staff and volunteers and teach them methods of rehabilitation; (e) Ensure that. Medical institutions and other relevant Educational institutes offer curricula and specialties on rehabilitation.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Part IV – Accessibility 19. Access to premises It shall be the responsibility of all organs in a public or private institution to provide— (a) Suitable exits for PwDs; (b) Universal standards or designs of public toilets.

20. Duty to provide access to buildings Any person, who constructs, a building to which the public is invited, shall ensure that PwDs have access through Provision of— (a) Accessible and easy-to-find building entrances, connected by accessible pathways to accessible indoor or outdoor parking areas, local public transit stops and accessible elevators; (b) Safe and accessible urinal, bathrooms for the diverse disabilities; (c) Safe and well-dimensioned staircases for the comfort of persons with mobility problems; (d) Ramps wherever stairs obstruct the free passage of pedestrians, mainly wheel chair users and people with mobility problems; (e) Adequate railing around hazardous areas, stairs, ramps, accessible roofs, mezzanines, galleries, balconies and raised platforms; (f) Well-dimensioned elevators,('in the case of multi-storied buildings) that PwDs can use conveniently.

(2) An accessible elevator should(i) serve all floors normally reached by the public; (ii) Have embossed numerals on the floor selector buttons to be easily identifiable by touch; (iii) Signal arrival at each floor to alert sightless and hearing impaired passengers simultaneously (3) Where it is difficult or unfeasible to install a ramp or an elevator to an existing building, the owner of the building shall provide platform lifts to provide accessibility.

Explanations: The PwDs Act operationalises article 35 of the 1995 Constitution of Uganda which calls Parliament to enact laws that promote and protect the Rights of PwDs. The Act aims at equalising the opportunities for PwDs by removing the barriers

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda that limit their participation in all aspects of life. The Act fights discrimination based on all forms of disabilities thus addressing the negative attitude towards PwDs and promotes the inclusion of their needs and rights into both government and non-government programmes (3. Objects of the Act).

The PwDs Act defines disability as “a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participation”. Taken from a social and human rights based perspective, the current definition of disability used in the PwDs Act is not in accordance with CRPD Article 1 and does not fully reflect this definition. This legislation puts the emphasis on the person with a disability rather than the social and environmental barriers which may hinder their full and effective participation in everyday life. Furthermore there is no measure or definition of what constitutes a substantial functional limitation (2. Definition).

The Act primarily encourages IE for CwDs but also give the opportunity to set up Annexes or Units for special needs children, whenever IE cannot be provided (5. Education). The Act clearly prohibits denial of the right to education for CwDs (6. Prohibition of discrimination from educational services) and discrimination of CwDs from educational institutions. This is in line with Article 21 of 1995 Constitution of Uganda.

The PwDs Act integrates teaching of CwDs in the teacher training curriculum and the development of a specific curriculum to learn on how to teach to CwDs. This aims ensuring that every trained teacher is capable of addressing the educational needs of learners with disabilities at all levels thus promoting IE for all (5(e) and (f)). This echoes the CRPD Article 24(4) that requires all schools to be inclusive of all categories of CwDs without any teaching barriers.

The PwDs Act requires that PwDs have equal access to health services without any barriers. It requires translation of health and medical information into Braille including drugs or medicine directives. It requires introduction of SL into the curriculum for medical personnel to enable communication with deaf persons through Sign language. CRPD Article 25 calls for removal of all barriers including communication and accessibility barriers that limit access to health services by PwDs including CwDs (7 (1), 3(a),(b),(c)).

Additionally, the PwDs Act requires for provision of special health services such as sexual and reproductive health services to women and girls with disabilities whose health needs are unique compared to other PwDs (8(a)). This echoes the CRPD Article 25 that recognises their unique health needs and calls for attention to provision of health services to women and girls with disabilities.

The PwDs Act requires that PwDs have access to any building available to the public: ramps, lifts, accessible bathrooms, toilets and other physical facilitation must be provided ((19) and (20)). The Act also promotes the use of universal designs when building public and private buildings. Although this is not explicitly mentioned by the Act, this of course applies to

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda school buildings and toilets.

Conclusively, the PwDs Act specifically refers to CwDs in the provisions on education and indeed the needs and rights of CwDs are covered by any provisions under the whole Act as there are among PwDs. However an article highlighting the specific needs and rights of CwDs is missing.

Analysis

Achievements: Challenges: The section 5 of the PwDs Act, 2006, states that Government shall promote the educational development of PwDs. Still, very few CwDs go to school and huge problems remain, including, among others, appropriate instructional materials like Braille material and books in Braille, audio equipment, and qualified teachers. In 1995, the first teachers were trained in in SNE, whereas now they need broader competences within all types of disabilities and specific needs of children in order for all to be included334.

Recommendations

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The PwDs Act is currently being amended to align it with the CRPD and make it implementable. The PwDs Act should be the most comprehensive piece of legislation covering a wide range of social, political and economic rights of PwDs and CwDs. It should be a summary of the domestic version of the convention on disability.

UNICEF Uganda should support efforts to have CwDs issues and rights integrated and prioritised in the amendment of the Act. Such amendments could relate to the following issues. Social protection grants should be introduced to support CwDs’ welfare. Free access to primary education and health services and making them accessible to all children should also be prioritised. Establishment of sports facilities for CwDs is another issue that should be considered.

Furthermore, UNICEF Uganda should invest in awareness raising about the CwDs’ rights using the CRPD and the CRC as advocacy tools. UNICEF Uganda should also invest in education of CwDs by establishing role model schools in different regions of Uganda promoting IE for the most disadvantaged CwDs.

Nillson, Shia, Annika, Disability Rights in Uganda, NIDS/MSC, 2011.

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5. The National Policy on Disability in Uganda, 2006 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoGLSD NCD All Government Ministries, Departments and Agencies are responsible for the implementation of disability provisions within their respective mandate Local Government Institutions in charge of implementation: Local Government Institutions District Department of Community Development

Content of the Relevant articles and sections: legislation and/or 1. Introduction policy

1.2. Disability in Uganda Disability is defined as permanent and substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participations 1.4 Situation Analysis 1.4.4. Education and skills Under UPE policy, government provides free education to all children in primary schools. There are 150,559 CwDs under this programme, of whom 82,537 are males and 68,022 are females. Approximately 4,500 PwDs have been trained in Vocational skills in the Vocational Rehabilitation Institutions since 1967. The Special Needs Education (SNE), under Ministry of Education and Sports addresses issues of children with learning difficulties. The programmes under Kyambogo University play a key role in training teachers and other professionals in special needs education and rehabilitation. Furthermore, Government put in place a rehabilitation and resettlement scheme that includes vocational rehabilitation services, sheltered workshops that focus on employable skills training and orthopaedic workshops for provision of assistive devices to PwDs. 1.4.8 Health The 2002, Uganda Population and Housing Census results revealed that 35.3% of PwDs had loss or limited use of limbs,

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 23.3% spinal injuries and 15.1% hearing difficulties. Persons 60 years and above are 1,101,039 of which 18% have chronic diseases associated with old age and disability. Government has put in place the Uganda National Minimum Health Care Package (UNMHC) to ensure that the people of Uganda receive essential services. In addition, Government has put in place primary health care package, regional referral hospitals, built new and upgraded existing health centres and trained medical staff. Despite the above scenario, high cost of health services and assistive devices, negative attitudes of some health staff, unfriendly infrastructure and equipment designs, and long distances to the health facilities are still challenges.

The major concerns of PwDs therefore, remain their inability to access basic health services and assistive devices to enable them lead independent and productive lives.

4. Policy Priorities The priority areas of focus are accessibility, participation, capacity building, awareness raising, prevention and management of disabilities, care and support, socio-economic security, research, communication (sign language, tactile and Braille literacy) and budgeting.

5. Institutional framework 5.1 Ministry of Gender, Labour and Social Development (MGLSD) 5.2 Other Government Ministries, Agencies and Departments 5.3 Local authorities 5.4 The private sector 5.5 Disabled Persons organisations 5.6 Other Civil Society Organisations 5.7 The Community 5.8 Parents and other caregivers 5.9 Persons with Disabilities 5.10 National Council for Disability Explanations: The National Policy on Disability in Uganda defines disability as “a permanent and substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participations.� Taken from a social and human rights based perspective, the current definition of disability used in the

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda PwDs Act is not in accordance with CRPD Article 1 and does not fully reflect this definition. This legislation puts the emphasis on the person with a disability rather than the social and environmental barriers which may hinder their full and effective participation in everyday life. Furthermore there is no measure or definition of what constitutes a substantial functional limitation (1.2).

This Policy aims to ensure that the needs of PwDs are addressed by “[guiding and informing] the planning process, resource allocation, implementation, monitoring and evaluation [of Government and non-government programmes and] activities to consider PwDs concerns at all levels”335. This Policy is structured around the state of play of the situation (1.4. Situation Analysis), the definition of a vision and mission of a Uganda society in which PwDS would be fully included is also (3) and the identification of prioritised areas of work (4. Policy Priorities). Specific strategies are described to achieve this goal: disability budgeting, advocacy and lobbying, raising awareness and capacity-building of stakeholders, participation of PwDs in policy processes, research and the set-up of a database relating to PwDs living in Uganda.

While this Policy provides a framework for responding to the needs of PwDs, it does not highlight the needs of CwDs nor does it refer CwDs as one of the most vulnerable and marginalised category of PwDs to poverty, education, health challenges, HIV/AIDs and conflicts. CwDs are only mentioned in the education sector as one of the categories benefiting from the UPE. This Policy reminds what has been done so far in favour of the education of CwDs (1.1.4 of the policy. However this Policy does not provide a clear direction and guidance on how to achieve IE for all different categories of CwDs. This Policy does not either highlight access to information, communication and technologies which helps CwDs to access different services.

Analysis

Achievements: This National Policy on Disability in Uganda operationalises the PwDs Act, 2006.

Challenges: The MoGLSD cannot fully implement this Policy due to inadequate budget allocation 336.

Recommendations

Once the PwDs Act has been reviewed, UNICEF Uganda should support the MoGLSD to review the National Policy on Disability in Uganda to align it with the CRPD and also ensure that the policy prioritizes the needs and rights of all categories of CwDs. An updated National Policy on Disability should be adopted only with an adequate certificate of

335

Government of Uganda, National Policy on Disability in Uganda, 2006.

336

African Child policy Forum (ACPF), Children with Disabilities in Uganda: The Hidden Reality, 2011.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda financial implications. Otherwise, the provisions will remain meaningless.

6. The National Council for Disability Act, 2003 Ugandan national and local government institutions in charge

National Government Institutions in charge: The NCD is the semi-autonomous government agency which is part of MoGLSD MoH MoES MoFPED Ministry of Local Governments Ministry responsible for public service Ministry of Justice and Constitutional Affairs Ministry responsible for works, housing and communication Local Government Institutions in charge of implementation: Lower Council for Disability: -

The District Councils for Disability monitor and audit government and non-government programmes at district to ensure that they include PwDs. - The Sub-County Council for Disability monitor and audit government and non-government programmes at sub-county level to ensure that they include PwDs. Content of the Relevant articles and sections: legislation and/or Disability means substantial functional limitation of daily life activities of an individual caused by physical, sensory or mental policy impairment and environmental barriers.

Part II - Establishment, Functions and Composition of the Council 5. Objectives of the Council The objectives of the Council are— a) to promote the implementation and the equalisation of opportunities for PwDs;.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda b) to monitor and evaluate the impact of policies and programmes designed for equality and full participation of persons with disabilities c) to advocate for and promote effective service delivery and collaboration between service providers and persons with disability ; d) to advocate for the enactment of laws and the reviewing of existing laws with a view to complying with the equalisation of opportunities as stipulated in the United Nations Standard Rules on the Equalisation of Opportunities for PwDs, the Constitution and other laws and international legal instruments.

6. Functions of the Council 1) The functions of the Council are a) to act as a body at a national level through which the needs, problems, concerns, potentials and abilities of PwDs can be communicated to Government and its agencies for action ); b) to monitor and evaluate the extent to which Government, NGOs and the private sector include and meet the needs of PwDs in their planning and service delivery; c) to act as a co-ordinating body between Government departments, other service providers and PwDs; d) to solicit for and acquire funds and other resources from Government and donors for use in the performance of the Council’s functions; e) to advocate for the promotion of and encourage activities undertaken by institutions, organisations and individuals for the promotion and development of programmes and projects designed to improve the lives and situation of PwDs; f) to carry out or commission surveys and investigations in matters or incidents relating— i. to violation of rights of persons with disabilies, ii. non-compliance with programmes, policies or laws relating to disabilities; and take appropriate action in relation thereto or refer the matter to the relevant authority; g) to hold annual general meetings of representative from lower councils for PwDs for the purposes of reviewing the Council’s performance and also plan for the subsequent year; h) to consider and recommend ways and means of controlling the unnecessary increase of disability in Uganda; i) to assist the Electoral Commission to ensure the conducting of free and fair elections of representatives of PwDs to Parliament and Local Government Councils; j) to identify and give guidelines to organisations working for PwDs; and k) to perform any other functions relating to the above as the Minister may determine.

(2) For the purpose of carrying out its function under paragraph (f) of subsection (1) the Council shall have powers to call 250

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda witnesses and demand the production of documents that it may require.

7. Composition of the Council (1) The Council shall be composed of the following members to be appointed by the Minister— a. one representative of the following Ministries in charge of issues relating to disabilities as Ex-officio members— i.

Ministry responsible for local governments; ii.

Ministry responsible for finance, planning and economic development; iii.

Ministry responsible for health; iv.

Ministry responsible for education and sports; v. Ministry responsible for gender, labour and social development; vi.

Ministry responsible for public service; vii.

Ministry responsible for justice and constitutional affairs; viii.

Ministry responsible for works, housing and communication; b. two PwDs, male and female from each region nominated by the National Organisations of PwDs and approved by the Minister; c. one parent of a child with disabilities appointed by the Minister in consultation with the national organisations of PwDs; d. one professional and experienced person in the field of disability, appointed by the Minister in consultation with national organisations of PwDs; e. one representative of the youths with disabilities appointed by the Minister in consultation with the National Organisations of PwDs; f. (f)one representative of the Federation of Uganda Employers appointed by the Minister in consultation with the Federation; g. (g)one representative of Non-Governmental Organisations working with PwDs appointed by the Minister in consultation with the National Organisations of PwDs; h. (h)one Member of Parliament representing PwDs elected by the Members of Parliament representing PwDs. (3) The Council may co-opt not more than three persons at a time who are knowledgeable in disability issues and committed to the disability movement as and when it deems necessary.

(4) At least one third of the members of the Council shall be female.

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Part IV – Lower Councils for Disability 18. District Council for Disability 1) The Chairperson of a District or City Local Government Council shall appoint members of the District or City Council for Disability to serve for a period of three years.

2) (2) The District or City Council for Disability shall consist of— a) the District Rehabilitation Officer as an ex-officio member; b) the District finance Officer as an ex-official members; c) the District Education Officer as an ex-officio member; d) the Director of Health Services as an ex-officio member; e) the two district councillors for disability as ex-officio members; f) two other PwDs appointed in consultation with the organisation of PwDs in the district or city and one of whom shall be a woman; g) one representative of the parents ofCwDs appointed in consultation with the organizations of PwDs in the district or city; h) one representative of Non-Governmental Organisations working with PwDs in the district or city; i) the Chairperson of the District Committee responsible for disability affairs or Social Services at the Local Council as an ex-officio member; j) one representative of youth with disabilities, on the District or city youth council; k) one person of proven integrity with knowledge in disability who is involved in the promotion and advancement of the disability matters appointed in consultation with organisations of PwDs in the district or city.

3) The District or City Council for Disability shall elect the Chairperson and the Vice Chairperson from Members of the Council who are PwDs taking into consideration gender balance.

19. Functions of District Council for Disability The functions of the District Council for Disability are— a) to coordinate and monitor the implementation of policies and programmes for PwDs in the District; b) to promote and advocate for the integration of services for person with disabilities in the District Plans of Action; c) to advocate for the implementation of national policies on disability in the District or City;

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda d) to submit reports on the situation of PwDs in the District or City Local Government Council and to the NCD twice a year, e) to inquire into any matter that violates the rights of PwDs and non-compliance with laws, regulations, policies or programs relating to disability and recommend appropriate action to the relevant body at the District or City level, if appropriate or to the National Council; and f) to perform any other function that may enhance the wellbeing of PwDs in the District or city.

20. District or City Secretariat and staff 1) A District or City Council for Disabilities shall have a Secretariat which shall plan, coordinate and generally assist the Council in carrying out the functions and day-to-day operations of the Councils.

2) The Secretariat shall be headed by an Executive Secretary who shall be appointed by the District Chief Administrative Officer on the recommendation of the District Service Commission.

3) The Secretariat shall have such other officers and employees as may be determined by the Council and approved by the District or City Chairperson who shall be appointed by the Chief Administrative Officer on the recommendation of the District Service Commission.

21. Sub-County Council for Disability 1) The Chairperson of a Municipal, City Division, Municipal Division, Town or Sub-county local Council shall appoint members to the Municipal, City Division, Municipal Division, Town or Sub-county Council for Disability as the case may be, who shall serve for a period of three years.

2) The Municipal, City Division, Municipal Division, Town or Sub-county Council for Disability shall consist of— a) the Community Development Officer responsible for disability, who shall be the Secretary; b) two Councillors for disability at that level, who shall be ex-officio c) one person of proven integrity and commitment to the disability matters; d) one parent of a child with disability; e) Inspector of Schools as an ex-officio member; f) an officer in charge of health services at that level as an ex-officio member; g) a representative of non-governmental organisations if any, appointed in consultation with organisations of PwDs at that level; h) two other PwDs appointed in consultation with organisations of PwDs at that level and one of whom shall be a woman.

3) The Municipal, City Division, Municipal Division, Town or Sub-county Council shall elect their Chairperson and Vice253

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Chairperson from members who are PwDs taking in to consideration gender balance.

22. Functions of Sub-County Council for Disability 1) The functions of a Municipal, City Division, Municipal Division, Town or Sub-county Council for Disability are— a) to coordinate and monitor the implementation of policies and programmes for PwDs in the Sub-county; b) to promote and advocate for the integration of services for PwDs in the Sub-county Plan of Action; c) to advocate for the implementation of District and national policies on disability; d) to submit reports on the situation of PwDs in the Sub-county to the District Council for Disability twice a year; e) to perform any other function that will enhance the wellbeing of PwDs in the Sub-county; f) inquire into any matter that violates the rights of PwDs and non-compliance with laws, regulations, polices or programs relating to disability and recommend appropriate action to the District or City Council for Disability for relevant action; and g) to submit in a year; reports to the District or City Council for Disability every after six months.

2) The members of the Municipal, City Division, Municipal Division, Town and Sub-county Council for Disability shall elect from among the members of the Council having disabilities a Chairperson and a vice Chairperson taking into consideration gender balance.

Explanations: Article 35 of the 1995 Constitution of Uganda requires Parliament to enact appropriate laws that protect the Rights of PwDs. NCD Act is one the laws enacted to promote and protect the Rights of PwDs through monitoring and auditing governmental and non-governmental programmes to ensure that the needs of PwDs including CwDs are addressed by all programmes. The NCD also voices out the needs of PwDs to Government.

The NCD has representatives from the various government ministries as ex-officials to ensure that there is effective mainstreaming of PwDs. They come from various sectors: Health, Education and Sports; Housing; works and communication; finance, planning and economic development; Gender, Labour and Social development and local government. It also takes into consideration of the gender balance where representatives of the four regions that is East, West, Central and North have male and female representatives who are PwDs. CwDs are represented by a parent of one of the CwDs who is responsible for voicing out the issues affecting CwDs to the Council. Organisations working with PwDs are represented on the NCD to ensure that issues affecting different categories of PwDs and service providers are brought to the attention of the Government through the NCD .However the NCD has not done yet status of the rights of CwDs in Uganda or carried out a training protection of the Rights of CwDs. 254

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The NCD has monitoring and reporting powers to assess the level of inclusion of all categories of PwDs including CwDs in provision of all services and in government and non-governmental programmes and then report to relevant government agencies and Parliament for action to be taken to address the gaps and equalize the opportunities for PwDs. NCD does not directly focus on CwDs but indirectly it provides them with a platform to communicate challenges and their needs to Government. The NCD Act does not prioritise reporting on issues affecting CwDs yet there the most vulnerable to social, economic, cultural and political imbalances or challenges. CwDs’ Rights protection mechanism should be prioritised in the law and activities of the NCD. The District and sub county, municipal and town councils for disability are composed of a representative of parents of CwDs who is responsible to voice out issues affecting CwDs in the respective areas to the respective councils for disability and then reported to the local government and NCD for action.

The District, sub-county, municipal and town councils for Disability assess the level of inclusion and mainstreaming of PwDs including children in the provision of services provided by both government and non-government agencies. District Councils for Disability at this level identify the gaps or imbalances and then report them to Government to be addressed. However these councils are not trained on protection of the rights of CwDs and on reporting violation of rights in their respective communities.

Analysis

Achievements: The NCD is recognised by government and other agencies as a voice of PwDs to Government .Every year it is required to report to Parliament on the status of the rights of PwDs. This enables government to know challenges facing PwDs and plan accordingly. Government established the Disability assistance grant in 2009 and mandated NCD to monitor the implementation with other stakeholders like MoGLSD. NCD is the government focal point on the reporting of the implementation of the Convention on Rights of PwDs .NCD submitted the Uganda initial report on the status of implementation of the convention on Rights of PwDs. Quoting Mbulamwana, it can also be added that “despite its limited funding, the NCD has scored a number of achievements as follows: It has established Council district braches in most districts of the country.

- Started monitoring how PwDs are benefiting from government services and other wider community activities.

- It has also started supporting PwDs in the fight for their rights. For instance, they supported PwDs to put a case against the taxi operators who had unfairly made him pay for his wheel chair.

- Some district disability councils have tabled for by laws on the education rights of PwDs like Kamuli district where a 255

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda bye law on all secondary schools to contribute to the education of blind children has been tabled.

Although the council is a young organ, it may go a long way in promoting the rights of PwDs as it has legal powers in fighting for disability rights.” 337 Challenges: The NCD is underfunded, which limits the scope of its activities. It also limits its mandate of monitoring how PwDs are benefiting from mainstream services. So many gaps in the service provision to PwDs are still existent to a large extent. The organs are ill funded to the extent that many programmes are not monitored; hence no data to advocate for positive change.

Therefore the leaders lack the capacity and know-how to address the disability issues in government planning processes.”338 According to DFID 2009 Disability Scope Report, the NCD received 96 million Uganda shillings which is too little to enable it fulfil its mandate.

Recommendations

UNICEF Uganda should support the NCD, NCC and EOC to work together to promote equal opportunities for CwDs through joint research on the status of CwDs, investigations of cases of CwDs, documentation and publication of good practices of protecting the Rights of CwDs. This is in line with the mandate of UNICEF of protecting and promoting rights of CwDs as required by CRPD Article 7 and CRC Article 23. It also strengthens the Child Rights protection mechanism.

The NCD governing body and staff should be empowered with Child Rights protection monitoring and reporting skills. This will ensure prioritisation of CwDs’ Rights in monitoring and reporting of the NCD to Government. This can be done through training .The child with disability protection monitoring tool should be developed and be used to report on good practices and violation of the rights of CwDs.

7. The Equal Opportunities Commission Act, 2007 Ugandan national National Government Institutions in charge: and local MoGLSD government

EOC

337

Mbulamwana, J., Chapter 3: Disability Movement in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 46.

338

Mbulamwana, J., Chapter 3: Disability Movement in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 43.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda institutions charge

in Local Government Institutions in charge of implementation:

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Content of the Relevant articles and sections: legislation and/or An Act to make provision in relation to the Equal Opportunities Commission pursuant to articles 32(3) and 32(4) and other policy relevant provisions of the Constitution; to provide for the composition and functions of the Commission; to give effect to

the State’s constitutional mandate to eliminate discrimination and inequalities against any individual or group of persons on the ground of sex, age, race, colour, ethnic origin, tribe, birth, creed or religion, health status, social or economic standing, political opinion or disability, and take affirmative action in favour of groups marginalised on the basis of gender, age, disability or any other reason created by history, tradition or custom for the purpose of redressing imbalances which exist against them; and to provide for other related matters.

Part II – Establishment and Membership of Commission 5. Composition of Commission The Commission shall consist of five members who shall include a Chairperson, Vice-Chairperson, at least one person with a disability, a youth and two women.

Part III – Functions and Powers of Commission 14. Functions of Commission (1) The functions of the Commission are to monitor, evaluate and ensure that policies, laws, plans, programs, activities, practices, traditions, cultures, usages and customs of— (a) organs of state at all levels; (b) statutory bodies and agencies; (c) public bodies and authorities; (d) private businesses and enterprises; (e) non governmental organizations, and (f) social and cultural communities, are compliant with equal opportunities and affirmative action in favour of groups marginalized on the basis of sex, race, 257

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda colour, ethnic origin, tribe, creed, religion, social or economic standing, political opinion, disability, gender, age or any other reason created by history, tradition or custom.

(2) Without prejudice to the generality of subsection (1) the Commission may— (a) investigate or inquire into, on its own initiative or on a complaint made by any person or group of persons, any act, circumstance, conduct, omission, programme, activity or practice which seems to amount to or constitute discrimination, marginalization or to otherwise undermine equal opportunities; (b) examine any law, proposed law, policy, culture, tradition, usage, custom or plan which is likely to have effect of nullifying or impairing equal opportunities to persons in employment or enjoyment of human rights. (c) develop, conduct and manage information and educational programs to facilitate and promote public awareness, understanding and acceptance of equal opportunities and treatment in employment, occupation, education and all social services; (d) undertake research and organize, coordinate and promote workshops, seminars, conferences and public discussions on equal opportunities and treatment in employment, education, social services or social and cultural construct of roles and responsibilities in society; (e) consider such recommendations, suggestions and requests concerning the promotion of equal opportunities as it may receive from any source; (f) prepare and publish, guidelines for implementation of equal opportunities and the avoidance of acts, practices, usage, customs, tradition or cultures that undermine equal opportunities; (g) monitor the compliance, in Uganda, with the provisions of international and regional conventions, treaties and other instruments to which Uganda is a party, that relate to or are relevant to the functions and objects of the Commission; (h) perform such other functions that are incidental or conducive to the above functions.

(3) The Commission may rectify, settle or remedy any act, omission, circumstance, practice, tradition, culture, usage or custom that is found to constitute discrimination, marginalization or which otherwise undermines equal opportunities through mediation, conciliation, negotiation, settlement or other dispute resolution mechanism.

(4) Subject to subsection (3) the Commission may hear and determine complaints by any person against any action, practice, usage, plan, policy programme, tradition, culture or custom followed by any organ, body, business organization, institution or person which amounts to discrimination, marginalization or undermines equal opportunities.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Part V – Miscellaneous Provisions 23. Lodging Complaints (1) A person may lodge a complaint relating to discrimination, marginalization or any act which undermines or impairs equal opportunities with the Commission.

(2) A complaint made under subsection (1) shall be in writing and signed by the complainant or complainants.

(3) The Commission shall consider or hear the complaint within six months after receipt of the complaint.

Explanations: The EOC is composed of five members including a representative of PwDs, youth and women. These form some of the vulnerable groups that do not have equal opportunity to enjoy the social, economic, cultural and political rights. There are many vulnerable groups such as indigenous people and children that are not represented in the Commission. The EOC works with PwDs which is evidenced by their representation on the Commission but it does not represent CwDs directly.

There is a need to address this gap.

The EOC exists to address the imbalance faced by marginalised and vulnerable groups such as PwDs, women, youth, indigenous people and others using different means. The Commission promotes equalisation of opportunities for marginalised groups through research, publication and raising awareness (i.e. organising campaigns, trainings and public events) about good acts that promote equal opportunities for all. The Commission also has a political role: the EOC provides advices to public bodies and monitor the creation and implementation of the legal and policy framework of human rights. The Commission has also powers equivalent to powers of a Court in so far this enables it to investigate or inquire into, on its own initiative or on a complaint , any grounds which seems to amount to or constitute discrimination, marginalization or to otherwise undermine equal opportunities. However judgments of the commission do not have legal force as the judgment of a Court would have.

The EOC promotes equal opportunities to education, employment and other services for all including CwDs. It monitors government and non-government programmes through assessment, research, investigation and publication of information to ensure that they comply with international treaties such as the CRPD and CRC. CRPD Article 7 and CRC Article 23 share the same intention with the EOC which is equalising the opportunities of marginalised groups, including CwDs. Analysis

Achievements: The EOC Act operationalises Article 32 (Affirmative action) of the 1995 Constitution of Uganda which calls the State to take affirmative action in favour of groups marginalised on the basis of gender, age, disability or any other reason created by history, tradition or custom, for the purpose of redressing imbalances which exist against them. Article 32 of the 259

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Constitution of Uganda further calls Parliament that shall make relevant laws, including laws for the establishment of an EOC, for the purpose of giving full effect to affirmation action of all marginalized groups. The outcome of implementation of the clause 2 of Article 32 is The EOC being a constitution body established and operating since 2007.

Challenges: The EOC was established to equalize opportunities for all vulnerable groups in 2007 has not carried any activities in relation to disability and nothing on CwDs. Recommendations

UNICEF Uganda should support the establishment of a partnership among the NCD, NCC and EOC to work together on promoting equal opportunities for CwDs through joint research on the status of CwDs, investigations of cases of CwDs’ inequalities, documentation and publication of good practices protecting CwDs’ Rights. The role and work of the EOC complements the monitoring and reporting work of the NCD and NCC. Both NCD and NCC can refer cases of violation of the Rights of CwDs and others to the EOC for investigation and action. The partnership will strengthen the CwDs’ Rights protection mechanism.

8. The Children Act, 1996 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoLSD Ministry of Local Government NCC Local Government Institutions in charge of implementation: District Secretary of Children’s Affairs District Executive Committee Secretary for Health and Welfare of Children Vice chairperson who shall be secretary for children welfare at each parish and village administrative unit

Content of the Relevant articles and sections: legislation and/or Part II – Rights of the Child policy

2. Definition of child

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda A child is a person below the age of eighteen years.

9. Children with disabilities The parents of children with disabilities and the State shall take appropriate steps to see that those children are— (a) assessed as early as possible as to the extent and nature of their disabilities; (b) offered appropriate treatment; and (c) afforded facilities for their rehabilitation and equal opportunities to education.

Part III – Support for Children by Local Authorities Section 10. Local councils to safeguard children and promote reconciliation between parents and children.

(1) It is the general duty of every local government council from the village to the district level— (a) to safeguard and promote the welfare of children within its area; and (b) to designate one of its members to be the person responsible for the welfare of children; and this person shall be referred to as the secretary for children’s affairs.

(5) A local government council shall keep a register of disabled children within its area of jurisdiction and give assistance to them whenever possible in order to enable those children to grow up with dignity among other children and to develop their potential and self-reliance.

Explanations: The Children Act is one the laws that operationalises Article 34 of the 1995 Constitution of Uganda which calls for enactment of laws that promote and protect the rights of children.

The Act highlights the different rights of children that should be promoted and realised to aim at children’s welfare. These rights include right to education, immunisation, adequate diet, clothing, shelter and medical care. It calls for protection of children against violence and abuse by those who take care of them. The Children Act specifically provides for assessment, treatment, rehabilitation and education of CwDs (9). However the Act does not provide for the type of education that CwDs are entitled to nor does it state how to realise the right to health and protection against violence and abuse, among other topics of importance for CwDs. The Children Act makes the protection of children legally enforceable. It foresees the establishment of a Secretary of Children’s Affairs within the Local Council Structure, as well as children and family courts at district level to ensure that the

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda welfare of children in the judicial system is promoted and protected. It highlights the responsibilities of different stakeholders including parents, community leaders, governments, care givers and courts of law in promoting and protecting the rights of children. The responsibilities range from giving support and care to children, reporting cases of violation to authorities and delivering justice to those who violate the rights of children. These provisions apply to all children, including CwDs, although the specific needs of CwDs are not pointed out.

The Children Act complements the Local Government Act provisions. The Local Government Act makes District Councils responsible for the welfare of children. For this, it foresees an Executive Committee for each District, where a selected Secretary cares for the health and welfare of children. District Councils have to ensure services that children should benefit from. These include services for education, health, maternity and child welfare, probation and welfare services as well social rehabilitation. It also obliges the Districts to ensure services for street children and orphans. The Local Government Act further foresees the establishment of an Executive Committee at each parish and village administrative unit, including a vice chairperson who shall be secretary for children welfare.

The Children Act also requires Districts to register all CwDs living on their constituency and gives them the necessary assistance that enables to live a dignified and self-reliant life just like any other. The register helps District in establishing the number of CwDs in their areas and thus design appropriate support through planning, implementation and monitoring of policies and programmes (10 (5)).

Considering that CwDs are more vulnerable and have various specific needs, the Children Act does not point out the need for extra attention for support and protection of CwDs. Therefore, the Act to some extant complies with the CRC by promoting and protecting the rights of children. However, it does not adequately comply with the CRPD because it does not prioritise the rights of CwDs as far as measures to promote and protect the rights of children are concerned.

Analysis

Achievements: Challenges: The family and children court have not been established as required by the law. There is also limited funding to support effective implementation of the law.

Recommendations

CwDs are among the most vulnerable categories of children to social and economic challenges. The needs and rights of CwDs should be prioritised in all laws, policies and mechanisms promoting and protecting the rights of children, as required by CRPD Article 7. UNICEF Uganda should therefore support efforts to review the Children Act and include the disability perspectives into all the sections of the Act. 262

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda In addition, UNICEF Uganda should support awareness arising of the CRPD child friendly articles among stakeholders such as community development workers, police, court workers and parliamentarians. This strengthens the important role of stakeholders to promote and protect the rights of CwDs.

9. The National Council for Children Act, 1996 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoGLSD Ministry of Justice and constitutional affairs NCC Local Government Institutions in charge of implementation: District Department of community Development

Content of the Relevant articles and sections: legislation and/or Part II – Establishment, Objects, Functions and Powers of the Council policy

3. Objects of the council.

The objects of the council are— a. To act as a body through which the needs and problems of children can be communicated to the Government and other decision-making institutions and agencies in Uganda. b. to coordinate and provide direction to all persons involved in child-based activities in Uganda in order to— (i) minimise duplication of effort and wastage of resources; and (ii) Maximize multisectoral and integrated approaches to meeting the needs of children and solving their problems, c. to promote the adoption and utilisation of the programme of action by the Government, non-governmental organisations and external support agencies through participation in their planning and resource allocation exercises; d. to support the development of district plans of action and the creation of district monitoring systems; e. to monitor the achievement of the goals set in the programme of action and the activities planned and undertaken by the Government, nongovernmental organisations and other agencies to achieve those goals;.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda f. to maintain a database on the situation of children and activities relating to children in Uganda; g. To support the continuing analysis of the changing needs of children and promote discussion of emerging priorities.

4. Functions of the council (1) For the attainment of its objects under section 3, the council shall have the following functions— a. to advise and promote policy and programmes regarding the Survival, development and protection of children in Uganda; b. to ensure proper planning and coordination of all child-based programmes within the broad guidelines of the programme of action; c. to regularly review and identify obstacles to the implementation of the programme of action and to advise on feasible solutions to overcome them; d. to monitor and evaluate programmes and activities of the programme of action; e. to mobilise and evaluate programmes and activities of the programme of action; f. to advise on programmes and budgets for the implementation of the programme of action; g. to act as a clearinghouse for information and data on the situation of children and activities designed to benefit children in Uganda; h. to disseminate research and development findings on the needs and problems of children through seminars, workshops, publications and other means of communication; i. to work in close cooperation with and to coordinate the activities of all persons, institutions, sectors and organisations, involved in child-based activities; j. To do all other things incidental or conducive to the efficient carrying out of the provisions of this Act as the Minister may direct and, by statutory instrument, prescribe.

(2) The council shall, to the greatest possible extent consistent with the performance of its functions, consult and cooperate with Ministries, departments, branches and agencies of the Government having duties related to, or having aims or objectives related to, those of the council.

Part III – Composition and Tenure of Office of Members of the Council 6. Composition of the council.

1. The council shall consist of twenty-one members appointed by the Minister for a period of three years as follows— a) a senior officer not below the rank of undersecretary from each of the following Ministries—

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda i. the Ministry responsible for finance and economic planning; ii. the Ministry responsible for health; iii. the Ministry responsible for education and sports; iv. the Ministry responsible for natural resources; v. the Ministry responsible for women in development,culture and youth; vi. the Ministry responsible for local government; vii. the Ministry responsible for justice; viii. the Ministry responsible for internal affairs; ix. the Ministry responsible for labour and social affairs; x. the Ministry responsible for information and broadcasting; b) four representatives of indigenous non-governmental organizations which are involved in children’s matters and which are registered under the Non-Governmental Organisations Act,each representing a geographical region; c) one representative from the Joint Christian Council; d) one representative from the Muslim Supreme Council; and e) Five persons of proven integrity and knowledgeable in children’s welfare, three of whom shall be women.

2. The Minister may revoke the appointment of a member on the recommendation of the council or for conduct incompatible with the objects of the council.

Explanations: The NCC Act operationalises Article 34 of the 1995 Constitution of Uganda which calls upon the State to enact laws that promote the rights of children. The CRC was ratified in 1990 and it requires Government to put in place Child Rights monitoring institutions to ensure that the programmes and services in Uganda comply with the CRC. The NCC was established by government as a child rights monitoring agency to ensure compliance of all programmes and activities with the CRC. The NCC Act was adopted in 1996. The CRPD was adopted in 2006 and entered into force in 2008 therefore the NCC does not adequately comply with the CRPD and there is a need to amend it to comply with the CRPD. The NCC is composed of twenty one members appointed by the MoGLSD for a period of three years. NCC Members represent different government ministries, non-governmental child based and religious organisations (III (6) (1) (a)).

However the Act does not provide for a representative of CwDs or a representative of CwDs like a parent. This implies that the issues of CwDs are not adequately voiced out and existing interventions too do not adequately address their needs and rights. Indeed, they are invisible in issues affecting children dealt by the NCC. 265

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The NCC Act provides for appointment of five members who have expertise in children’s rights and welfare of whom three are women. The MoGLSD should consider nominating a representative of CwDs on the board.

The mandate of the NCC enables it to monitor and assess the level of inclusion of children’s needs and rights in government programmes, identifies gaps and good practices and then communicates them to Government and public institutions for action. The NCC also acts as a coordinating body and focal point for children-related issues as well as gives direction on programmes and activities to be performed at national and district level to avoid duplication by stakeholders.

Furthermore, the NCC is in charge of research and documentation on the situation of children in Uganda and act as a clearing house for information and data on CwDs. It manages registers and database of CwDs at all levels, uses it to influence policies, programmes and activities in favour children. Finally, Section 3(g) requires the NCC to support the continuing analysis of the changing needs of children and promote discussion of emerging priorities. The needs of CwDs could therefore be considered as one of the emerging priorities that the NCC should tackle.

Analysis

Achievements: The NCC is recognised as a government agency that acts as a voice of children to government and public institutions. It reports to Parliament every year on the status of all children in Uganda. Section 27(b) Part VII requires the MoGLSD to submit to Parliament the annual report of the council submitted to him or her under section 26 part VII. Before the children’s issues did not have a platform to be voiced to government and other relevant stakeholders.

Challenges: The NCC does not adequately monitor and follow up inclusion of CwDs in policies, development plans, programmes and activities because the Act does neither provide for representative of CwDs nor parents of PwDs. It does not have specific reference to CwDs yet there are among the most vulnerable. The Act does not further give mandate NCC to cover issues of ALL children in including CwDs who are the most disadvantaged group in society.

Recommendations

One of the five board members-experts of the NCC should be a representative of CwDs to ensure that their issues are prioritised in all NCC programmes and activities thus entering CwDs’ participation in the institution.

The NCC should be supported to carry out continuous analysis of the changing needs of CwDs and promote discussion of the emerging issues. Before CwDs were not prioritised in policies, programmes and activities of all stakeholders. The entry into force of the CRPD has resulted into prioritization .This will enable the NCC to communicate updated challenges affecting CwDs to government and public institutions for intervention.

UNICEF Uganda should support establishment of a partnership among the NCC, NCC and EOC to work together on promoting equal opportunities for CwDs through joint research on status of CwDs, investigations of cases of CwDs 266

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda inequalities documentation and publication of good practices of protecting the Rights of CwDs. The role and work of the EOC complements the monitoring and reporting work of the NCD NCC. Both NCD and NCC can refer cases of violation of the Rights of CwDs and others to the EOC for investigation and action. The partnership will strengthen the CwDs Rights protection mechanism.

10.

The Child Labour Policy, 2006

Ugandan national and local government institutions in charge

National Government Institutions in charge: MoGLSD NCC Local Government Institutions in charge of implementation: District community development officer Sub country development officer

Content of the Relevant articles and sections: legislation and/or 1.0 Introduction policy

1.1. Definitions 1.1.1. Child A child is a person aged below 18 1.1.9. Vulnerable Group Categories of people who lack security and/or are susceptible to risk and/or are exploited, e.g. communities which are prone to regular drought and crop loss, elderly with no means of support, men, women and children in armed conflict areas, children Working in hazardous working conditions etc.

10.0 Target The following children (boys and girls) are the principal targets of this policy: - Children working in domestic work.

- Children trapped in commercial sexual exploitation.

- Children in dangerous activities in the informal sector and in the streets.

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Children engaged in commercial agriculture, in particular plantations.

Children involved in other hazardous and illicit activities.

Orphaned children and working children affected by HIV/AIDS. Children affected by armed conflict.

School dropouts at risk of child labour.

Child parents, especially child mothers.

- Children who are vulnerable to child labour due to their disabilities.

Explanations: The National Child Labour Policy provides a framework for the prevention, protection and elimination of all forms of child labour. It explains the socio economic context of child labour (Section 2), its nature, extend and magnitude (Section 3) as well as its causes, consequences and effects (Section 4). It further outlines governmental response to the problem of child labour, and the institutional framework within the national child labour policy operates (Section 5).

This Policy targets different categories of children and specifically includes “children who are vulnerable to child labour due to disabilities”. The policy does specifically recognise CwDs as one of the most vulnerable categories to child labour (Section 1 (1) (9)). Although CwDs are among the target group, the Policy does not provide mechanism on how to eliminate child labour among the CwDs who are more vulnerable than any other categories.

This Policy refers to the existing international and national legal and policy framework (Section 5). For example, the CRC is mentioned. The CRPD is not referred to in this Policy because both the Child Labour Policy and the CRPD were adopted in 2006. Thus there is a need to review it to ensure that it fully complies with the CRPD. Analysis

Achievements: Challenges: -

Recommendations

UNICEF Uganda should support the efforts aimed at reviewing the Child Labour Policy to ensure that it adequately domesticates or complies with the CRPD. The Department of children and youth and the Department of labour of the MoGLSD have the mandate to review the policy and can be supported to engage different categories of children, CwDs in particular.

UNICEF Uganda should support the MoGLSD to carry out awareness arising among different stakeholders such as police, MoGLSD officers, District Community Development Officers and others about the CRPD child friendly articles. This will 268

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda strengthen the child rights protection mechanism, which are in place in Uganda in view of responding to the needs of and promoting the rights of CwDs.

11.

The National Orphans and Other Vulnerable Children Policy, 2004

Ugandan national and local government institutions in charge

National Government Institutions in charge: MoGLSD MoES Local Government Institutions in charge of implementation: District Department of Community Development

Content of the Relevant articles and sections: legislation and/or 1. Introduction policy

1.1. Background 1.1.3 Education Education as a means of fighting poverty and reducing vulnerability is one of the top priorities for children. The Government has given due attention to basic education, resulting in substantial increase in primary school enrolment, particularly for the poorest quintile and the girl-child.

Unfortunately, there has been a decline in primary school retention in the past few years due to high dropout rates.

Furthermore regional, rural and urban disparities still exist in school enrolment with a higher proportion of children enrolled in urban areas and the relatively more prosperous central region. The main barriers to access and full participation of children in education include, costs of scholastic and basic requirements, cost of post-primary schooling, disability, ill health, early marriages, teenage pregnancy, sexual harassment, heavy burden of household chores, distance to school, insecurity and poor nutrition or no meals both in schools and at home. In spite of the Universal Primary Education (UPE) Programme 3 percent of primary school age children were not in school3. In addition, many more children who were in school were not consistently attending classes. Consequently, the transition rate from primary to under-primary and tertiary levels has been low and very few children are now likely to complete primary and continue to higher levels of education.

1.3. Existing Laws, Policies and Institutional Framework

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 1.3.3 National Development Framework The overarching national development framework in the long-term is the Uganda Vision 2025 and the Poverty Eradication Action Plan (PEAP). […]

Furthermore, there are a number of complementary policies and programmes that impact on the welfare of children.

These include […] the Policy on the Elderly and the Policy on the Disability.

2. Guiding Principles The Guiding Principles underlying the Policy are: 2.1 Building on the Human Rights-Based Approach to Programming 2.2 Making the Family and Community the First Line of Response 2.3 Focusing on the Most Vulnerable Children and Communities The focus will be on the most vulnerable children who are without families and may not be orphans, with the intention of re-integrating them back into the family. Secondly, attention will be on the most needy households of adults and children that may or may not contain an orphan, with the intention of mitigating the impact of vulnerability in Uganda’s current context of HIV/AIDS, poverty, gender, etc.

2.4 Reducing Vulnerability A special focus will be on the alleviation of poverty of vulnerable children and households, maintaining children in school over the long term, providing for their health, particularly HIV/AIDS prevention, care and support activities. Priority will also be given to providing preventive health care and psychosocial support to orphans, other vulnerable children and their caregivers.

2.5 Facilitating Community Participation and Empowerment This will involve sustained promotion of community initiatives and taking into account the capabilities of the community with a view to strengthening them.

2.6 Promoting Gender Equity This will entail taking into account and examining the relationship between men and women, boys and girls. These relationships will be examined during planning, programming, monitoring and evaluation, with special focus on the most vulnerable children and communities to ensure that neither gender is being marginalized nor disadvantaged.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 2.7 Treating Recipients with Respect.

Families and communities will be encouraged to treat orphans and other vulnerable children with respect. They are not to be treated as helpless victims but as actors in their own right. They will be entitled to express their own views and be actively involved in matters that concern them.

2.8 Reducing Discrimination and Stigmatisation Stigmatization and discrimination, which act as a barrier to the vulnerable child and the family to accessing support will be minimized.

2.9 Ensuring the Social Inclusion of Marginalized Groups 2.10 Ensuring the Participation of Vulnerable Children and Families 2.11 Strengthening Partnerships This will involve strengthening partnerships and networks between existing households and communities with government, private sector, development partners and CSOs, for sustainable service delivery at all levels.

2.12 Delivering Integrated and Holistic Services All interventions designed for orphans and other vulnerable children by all actors at all levels will include the relevant components of the basic services to orphans and other vulnerable children.

2.13 Supporting Services Delivery through Decentralization The decentralized structures at the district and lower levels will be strengthened to ensure quality and sustainable delivery of services to orphans and other vulnerable children.

2.14 Designing Age-Sensitive Programmes Interventions designed will take into account the different ages of the target groups being served.

5. Policy Priorities Government will focus on services that are cost-effective and have the greatest impact on reducing vulnerability and improving the welfare of orphans and other vulnerable children to promote equity. Interventions that build capacity and improve quality and effectiveness will be supported and implemented in an integrated manner. The priority areas of focus are care and support, child protection, education, health, food security and nutrition, psychosocial support, socio-economic security, conflict resolution and peace-building. These interventions constitute the Essential Services Package for orphans and other vulnerable children.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 6. Target Groups The categories of children to be targeted include: - Orphans and orphans households - Children affected by armed conflict.

- Children abused or neglected.

- Children in conflict with the law.

- Children affected by HIV/AIDS or other diseases.

- Children in need of alternative family care.

- Children affected by disability.

- Children in ‘hard-to-reach’ area - Children living under the worst forms of labour - Children living on the streets.

7. Institutional Framework Implementation of the Policy will be multi-sectoral.

7.1 Ministry of Gender, Labour and Social Development 7.2 Other Government Ministries, Agencies and Departments 7.3 Local Authorities 7.4 The Private Sector 7.5 Civil Society Organisations 7.6 The Community 7.7 The Children 9. Concepts and Definitions Disability: Substantial functional limitation of daily life activities of an individual caused by physical, sensory or mental impairment and environmental barriers. […]

Stigmatisation : This is wide spread behaviour of societal attitude that renders a person or a group of people feel worthless or helpless as a result of an ailment disability or inferior social status.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Explanations: This Policy provides a framework for the realisation of the rights of orphans and vulnerable children and points out the responsibilities of different stakeholders towards the promotion and protection of these rights.

CwDs are listed as one of the vulnerable groups of children who are targeted by this Policy (6). However the term “children affected by disability” is not a human rights-based language. The appropriate wording, CwDs, should be used instead.

This Policy defines disability as a “substantial functional limitation of daily life activities of an individual caused by physical, sensory or mental impairment and environmental barriers” (Section 9). This definition is not in line with the CRPD which adopts a social model of disability and considers that disability is “the results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (Preamble, (e)). The CRPD also points out that disability is an evolving concept.

This Policy primarily targets orphans who are considered as the most vulnerable group (Section 2 (3)). It does not prioritised CwDs who are the most vulnerable to social economic challenges and, as a result, CwDs are overlooked by this Policy. It does not detail how different categories of CwDs are vulnerable to child labour nor does it give appropriate intervention to address vulnerability of CwDs to child labour.

This Policy supports elimination of discrimination and stigmatisation of the marginalised and vulnerable children that include CwDs. The policy mentions disability as one of the grounds for stigmatisation and eliminates discrimination through direct support to vulnerable groups, mobilisation and advocacy, collaboration as well as monitoring and evaluation (Section 4 (3)).

This Policy obviously does not refer to the CRPD, which was adopted after this Policy. As part of the national legal and policy framework, it makes reference to the Policy on Disability (Section 1 (3) (3)). However, this is not clear because the PwDs Act and the National Policy On Disability in Uganda were both adopted in 2006, yet the National OVC Policy is of 2004.

This Policy prioritises the provisions for “care and support, child protection, education, health, food security and nutrition, psychosocial support, socio-economic security” of all targeted children (Section 5). However the different categories of vulnerable and marginalised children, which include CwDs, targeted by the Policy have different needs that are not specified. CwDs are a diverse vulnerable category of children with different needs and this should be highlighted to support the development of appropriate interventions for each category of vulnerable group, including CwDs. This Policy highlights the responsibilities of different stakeholders ranging from national and local Government Institutions, the private sector, the CSOs, the communities, including parents and guardians, and children themselves in promoting the 273

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda rights of and in improving the welfare of vulnerable children, including CwDs. The involvement of all stakeholders builds a collective responsibility to eliminate child labour at all levels. The participation of CwDs is key to realise their right to speak on their behalf in view of eliminating child labour.

Analysis

Achievements: Challenges: -

Recommendations

UNICEF Uganda should support the review of the National Orphans and Other Vulnerable Children Policy in order to integrate the appropriate human rights-based language (CwDs instead of “children affected by disability”) and to specify the different needs of the various categories of vulnerable children, especially the CwDs’ ones.

UNICEF Uganda should support the establishment of a National Partnership for CwDs to bring together various stakeholders working in the field of children affairs and of disability affairs. This would support the prioritization of the issues affecting CwDs in the design, implementation and monitoring of both government and non-governmental programmes. To do that, UNICEF Uganda should support the NCD to develop a CwDs-participation checklist to support their inclusion through auditing government and non –government programmes to find out the extent to which they include CwDs. Finally, UNICEF Uganda should support awareness raising of the rights and needs of CwDs among both the children based stakeholders and the DPOs.

12.

The Education (Pre-Primary, Primary and Post-Primary) Act, 2008

Ugandan national and local government institutions in charge

National Government Institutions in charge: MoES / Directorate of Education Standards Local Government Institutions in charge of implementation: District Department of Education District or Municipal Councils’ Standing Committee responsible for education District Education Officer and municipal, division, town and sub-county Council

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Content of the Relevant articles and sections: legislation and/or First Schedule - Currency points policy

Part I – Preliminary 1. Objectives of Act. The objectives of the Act are— (a) to give full effect to education policy of Government and functions and services by Government; (b) to give full effect to the decentralization of education services; (c) to give full effect to the Universal Primary Education Policy of Government; (d) to give full effect to the Universal Post Primary Education and Training Policy of Government; (e) to promote partnership with the various stakeholders in providing education services; (f) to promote quality control of education and training; (g) to promote physical education and sports in schools.

Part II – Roles and powers of the Minister 3. Roles and Powers of the Minister.

1) The Minister responsible for Education and Sports, shall ensure that national policies and objectives as enshrined in the Constitution are implemented and observed at all levels of Education.

2) Without prejudice to the general duties of the Minister under Subsection (1)— a) the Minister shall, from time to time, initiate policies and reforms of education as the need arises; and b) The Minister shall, from time to time, issue statutory instruments regarding Universal Primary Education, Universal Post Primary Education and Training, school meals, school charges, school uniforms, management and governance of education institutions in accordance with this Act. 3) Subject to the provisions of this Act, the Minister shall appoint relevant implementing agencies for effective implementation of the Act. 4) For the avoidance of doubt, it shall be the responsibility of the Minister to ensure that decentralized education services are in harmony with or conform to the national policy on education.

Part III – Provision of Education and Training

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 4. Policy on the provision of education and training.

1) Provision of education and training to the child shall be a joint responsibility of the State, the parent or guardian and other stakeholders 2) Basic education shall be provided and enjoyed as a right by all persons.

3) Financing of education shall be through fees, grants, donations, training levies, education tax, and any other means as deemed appropriate by Government.

4) Religious studies shall form part of the curriculum in primary and post primary schools.

5. Responsibilities of stakeholders in education and training.

1) Government through its relevant agencies shall be responsible for— a) the provision of learning and instructional materials structural development and teachers welfare; b) setting policy for all matters concerning education and training; c) setting and maintaining the national goals and broad aims of education; d) providing and controlling the national curriculum; e) evaluating academic standards through continuous assessment and national examinations; f) registering and licensing of teachers; g) recruiting, deployment and promotion of both teaching and non teaching staff; h) determining the language and medium of instruction; i) encouraging the development for a national language; j) ensuring equitable distribution of education institutions; k) regulating, establishing, and registering of Educational institutions; l) management, monitoring, supervising and disciplining of staff and students; m) ensuring supervision of performance in both public and schools; and n) development of management policies for all Government and Government aided schools and private schools.

2) The responsibilities of the parents and guardians shall include— a) registering their children of school going age at school; b) providing parental guidance and psychosocial welfare to their children; c) providing food, clothing, shelter, medical care and transport; d) promoting moral, spiritual and cultural growth of the children; e) participating in the promotion of discipline of their children; f) participating in community support to the school; and 276

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda g) Participating in the development and review of the curriculum.

3) The responsibility of the foundation body shall, in accordance with the set policy, include— a) participating in ensuring proper management of schools of their foundation; b) ensuring the promotion of religious, cultural and moral values and attitudes in schools of their foundation; c) participating in policy formulation; d) participating in education advocacy; e) mobilization of resources for education purposes; f) participating in implementation, monitoring and evaluation of education and services; and g) participating in the designing, development, and implementation,monitoring and reviewing of the curriculum.

4) The responsibility of Government in private education institutions shall be to ensure that private education institutions conform to the rules and regulations governing the provision of education services in Uganda.

5) The responsibility of Government in the provision of non formal education shall be— a) to identify areas or communities where non-formal education programmes are required; b) to establish non-formal education centres; c) to set guidelines and provide materials for non-formal education programmes; and d) to pay the teachers or instructors in non formal education programmes.

Part IV – Structure of Education 10. Levels of education.

(1) There shall be four levels of education as follows— a) pre-primary education; b) primary education; c) post primary education and training; and d) tertiary and university education. […]

(3) The following shall apply to primary education— a) primary education shall be universal and compulsory for pupils aged 6 (six) years and above which shall last seven years; b) all children of school going age shall enter and complete the primary education cycle of seven years; and

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda c) Government shall ensure that a child who drops out of school before completing primary education cycle attains basic education through alternative approaches to providing that education.

Part VI – Control and Management of Schools 26. District Councils’ Standing Committee responsible for education.

Subject to any written law, District or Municipal Councils’ Standing Committees for Education shall be responsible for the over sight role of all educational services decentralized to a district, municipal, town council, division and sub county.

28. Board of Governors and School Management Committees.

(1) There shall be constituted by the Minister or district education officer, by notice published in the Gazette, a board of governors or a school management committee for any education institution declared by the Minister or district education officer, as the case may be, to be an institution governed by such board of governors or school management committee and may appoint to it such number of members as provided for by this Act. Second Schedule: The Education (Management Committee) Regulations Part VII — Functions of a head teacher and collection of fees 15. Head teacher (2) It shall be the duty of the head teacher to— (k) make the school pupil friendly and especially to the girl-child and pupils with disabilities.

Explanations: The Education (Pre-Primary, Primary and Post-Primary) Act operationalises Article 30 of the 1995 Constitution of Uganda. It gives full effect to the Education Policy, Universal Primary Education (UPE) and Universal Secondary Education (USE) and to the decentralisation of education services (Section 1). However, the Act makes only one reference to CwDs and it does not mention IE (or even SNE) that would benefit CwDs. It is the responsibility of the Headmaster to create a childly friendly environment especially for CwDs (Schedule 2, Section 15 (k)). However there is very little reference to the specific needs and rights of CwDs in comparison to what would be required according to the CRDP Article 24.

The Act requires the Minister to “issue statutory instruments” to implement the Education Act (Section 3). However it

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda remains silent on the Minister to issue statutory instruments on IE which would benefit CwDs. The Act also requires Government to provide free primary education to all children including CwDs (Schedule 1, Part 1, (c) and Part II, Section 4 (2) and (3)).

The Education Act then requires Government to ensure that a child, who drops out of school before completing the primary education cycle, attains basic education through alternative approaches (Schedule 1, Part IV, Section 10 (3)(c)).

However, the Act does not define possible alternative approaches for CwDs who drop out of schools and who have specific needs.

The Education Act provides for the establishment and appointment of the Board of Governors and school management committee (Schedule 1, Part VI, section 28). However the Act does not provide for representatives of CwDs, who have special needs to be addressed adequately, in the appointed Board of Governors and school management committees.

The Districts are required by the Education to establish District Council’s Standing Committee for education to support the development and implementation of the District education development plan in consultation with the District Education Officer (Schedule 1, Part VI, Section 26 and Section 27 (1) and (2)). It also aims to ensure effective implementation of national policies and adherence to performance standards on the part of local governments (Local Government Act, Sections 96, 97 and 98).

Finally, the Act does not refer to the provision of the PwDs Act that requires that not less than 10% of education expenditure to cater for the education needs of PwDs including CwDs at all levels (PwDs Act, Part II, Section 5 Education (j)). Overall the Education Act does not adequately comply with CRPD Article 24 which calls for promotion and implementation of IE. Analysis

Achievements: The legal framework for pre-primary, primary and secondary education is in place.

Challenges: A certain number of challenges in including CwDs in school and promoting IE have been identified by the various stakeholders.

“In Uganda’s programme of Universal Primary Education (UPE), three children with hearing impairment were introduced in a class of fifty children without a SL teacher. After a year they dropped out of school yet the school administration thought they had practiced IE. This is a clear example where professionals are aware of the needs of CwDs but are not aware of what to do for them in an inclusive setting.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda […]

Coupled with the above is lack of enough resources and the very expensive requirements for promoting social inclusion.

This is depicted by the fact that the cost of including a blind child in class is higher than that of an able bodied child. The exercise book for a normal child costs 200 shillings while Braille paper for the blind child costs 10,000 shillings on top of the Braille kit which costs 200,000 shillings yet it is a must have for this child. This remains a challenge to the parents who are supposed to provide Braille paper to the children when they come to school under the universal primary education policy.

Government has however started to provide Braille paper but at a very limited level. The training of teachers either in SL or Braille skills is also an expensive venture. The government therefore should specifically come up with comprehensive budgets that address the needs of PwDs in education and other development processes.” 339 “It is also unfortunate to note that today most programmes are still measuring results based on output as opposed to outcome. Most of the monitoring reports in Uganda are about how many CwDs have been enrolled in universal primary education (UPE) or how many PwDs have acquired appliances and so on rather than how much have they benefited from the use. Emphasis on the quality of education they are receiving or whether they are appropriately using the appliances does not usually feature.” 340 “Similarly, lack of human rights based planning approach has led to a number of children to drop out of school because of the poor quality of education. When one officer was monitoring the education programme for blind children, one of the blind children was not found at school and when followed at home he said that it was useless to attend school because he was never given chance to participate in any class activity. He did not write like the rest of the children and he was not included in school activities. Unfortunately the parents also felt that the child should remain at home instead of finding out why he was not taught at school. This clearly shows that general development planning in Uganda is not based on the human rights based principles. With all the good intentions, the good policies of UPE are not effectively serving PwDs due

339

Katende Phoebe, Mirembe Jackson, Mwesigye James, Chapter 1: Social Inclusion or Exclusion, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 11.

340

Katende Phoebe, Mirembe Jackson, Mwesigye James, Chapter 1: Social Inclusion or Exclusion, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 13.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda to faulty planning.

However, irrespective of the above miscalculation at least a step has been made in Uganda: children, who would never have attended school, have been integrated in the school system. Nevertheless, from the writers’ analysis, there’s still limited active participation of CwDs in school activities.”341 “A substantial amount of funds have also been invested through the MoES to programmes focusing on PwDs. However, the results do not seem to be entirely positive. For instance, there is inadequate provision of Braille papers and other learning materials to children with visual impairment to assist them learn effectively. Similarly there are no SL teachers in the inclusive setting, leading to high levels of school drop outs amongst CwDs.”342 “Uganda has made a remarkable improvement in sanitary facilities in schools and households due to increased health education; however, these facilities are not yet adapted to the needs of disabled people. For instance, the public toilets and bathrooms are inaccessible to PwDs and further expose them to infection. Furthermore, due to poor and inaccessible health facilities in schools, disabled children drop out of schools.” 343 “Universal Primary Education (UPE) reform is a policy which has, by its objectives enhanced IE as an approach/methodology towards education for all. Uganda is one of the first countries in Africa to embrace UPE. […]

Uganda has a whole division of special education under the department of special education and counselling/ guidance at the MoES headed by a commissioner. With the support of the Danish government, this structure was decentralised to the then 56 districts of which 48 had construction work of offices and staff accommodation done. All the 56 had support for transport, petty cash for day to day activities, other running costs and materials for assessment of different categories of disabilities. Denmark was channelling this technical and financial support to Uganda government through a project called EARS. Teacher training was done through a sister programme called UNISE, which has currently been merged to Kyambogo University (KYU). After the phasing out of UNISE and EARS programmes, capacity building for teachers of special education has continued in KYU through both the conventional and long distance programmes at certificate and degree level.

341

Katende, P., Mirembe J., Mwesigye, J., Chapter 1: Social Inclusion or Exclusion, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 14.

342

Ndeezi, A., Chapter 4: Promoting political participation of persons with disabilities in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 58.

343

Ssebadukka, F., Were, D., Dr. Baingana Nganwa, A., Chapter 10: Health care services for People with Disabilities (PWDs) in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 129.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Another structure supporting the education of PwDs today is a network of Coordinating Centre Tutors (CCTs). CCTs are teacher trainers by profession. They are concerned with providing continuous professional development to teachers and support supervision. They work with in-service teachers. The pre-service teachers are receiving SNE training in Primary Teachers’ Colleges (PTCs) and these are well spread in the country. In addition, training avenues-a department at the ministry has frequently organised short trainings (one week) to appraise teachers on specific aspects like making and using instructional materials for the deaf, blindness, SL among others.

The sub-sector has also realised some resources as an achievement from both government and contribution of NGOs /DPOs. With NGOs and DPOs, it goes beyond budgetary increases to include awareness; lobbying and advocacy promotion for the education of PwDs. NUDIPU is the lead umbrella organisation carrying that out. NUDIPU has for example lobbied for and realised funding for advocacy on HIV/AIDS targeting CwDs in schools. Other activities will also be conducted by the education sector using the same funding.”344 “For example, of the four children per family that were to benefit from UPE, at least two had to be female, if the family had female children. Furthermore, the policy accorded priority to CwDs over children without disabilities. In practical terms, this entailed mobilizing CwDs to go to school and expanding school facilities for CwDs. There is evidence that UPE has contributed to increased equity in education.”345 Recommendations

An “Individuals with Disabilities Education” Act should be put in place to enable CwDs and PwDs to access education. Such an Act would call for obligation to realise the right to –inclusive- education for PwDs, including CwDs. It will create a legal framework for IE since the current Education Act, adopted in 2008, does not adequately address the educational needs of CwDs in line with the CRPD and CRC provisions.

The Education Act should be reviewed to ensure that the 10% education budget allocation to PwDs addresses the education needs of learners with disabilities. Inclusion of this provision will result into increased funding and support of the (special needs and) IE sub-sector.

344

Akope F., Ndaziboneye, B., Chapter 11: Developments in education for Persons with Disabilities in Uganda, in A Handbook on Disability experiences and approaches in Uganda, 2010, p. 125.

345

Ugandan Society for Disabled Children (USDC), Advocacy Strategy 2012, p. 3.

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13.

The Uganda National Institute of Special Education Act, 1995 amended by the University and Other Tertiary Institutions Act, 2001 amended in 2003 and 2006 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoES UNISE changed into the Faculty of Special Needs Education and Rehabilitation of Kyambogo University in 2003.

Local Government Institutions in charge of implementation: District Department of Education/District Education Officer

Content of the Relevant articles and sections: legislation and/or University and Other Tertiary Institutions Act policy

Existing Institutions 13.1.

(7) This Act may be cited as the Universities and Other Tertiary Institutions (Amendment) Act, 2003.

The Institute of Teacher Education, Kyambogo, the Uganda National Institute of Special Education and the Uganda Polytechnic, Kyambogo shall be merged into one University to be known as the Kyambogo University which shall be established by the Minister by statutory instrument under section 22 of the principal Act. Uganda National Institute of Special Education Act Part II – Establishment, Functions and Composition of the Institute and Council 4.Objects of the institute.

The objects for which the institute is established are— - to establish a training centre for teachers and other personnel to work in the field of special education and rehabilitation and to cater for all kinds of PwDs and special learning needs; - to have a resource centre for the production and dissemination of information on PwDs and special learning needs; - to undertake research in disabilities and other related fields for the better understanding and development of PwDs and special learning needs; - to initiate outreach programmes to promote greater awareness among teachers, parents, leaders and the general 283

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda

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public about PwDs and special learning needs; and to promote partnership and collaboration among agencies involved in disabilities, as well as help in bringing about enhancement of organisations of PwDs.

5. Functions of the institute.

(1) The functions of the institute are— a) to train teachers and other personnel working in the field of special needs education and rehabilitation to cater for all kinds of PwDs and learning needs; b) to conduct research with an emphasis on special needs education and rehabilitation; c) to produce, document and disseminate information on disabilities to persons involved in special education and rehabilitation and the public as a whole; d) to design, construct and develop educational materials and aids and to repair and maintain such equipment; e) to gather and collect information on educational materials and aids for PwDs and learning difficulties from other countries; f) to prepare brochures, journals, hand-outs, pamphlets and magazines for persons working in special education and rehabilitation and for PwDs and special learning needs; g) to conduct in-service courses for personnel working in areas of special needs education and rehabilitation; h) to run an orientation and mobility centre for training and demonstration purposes; i) to run a demonstration pre-school for the training and stimulation of CwDs and special learning needs and to offer educational assessment for those children; j) to conduct distance education in special education and rehabilitation; (k) to conduct examinations and award certificates and where necessary to revoke such awards; (l) to initiate and run appropriate and affordable outreach or extension services; (m) to do any other thing geared at the enhancement and development of special education and rehabilitation; and (n) to do any other thing which is incidental to or connected with the functions in this section.

Explanations: UNISE was transformed into the Faculty of Special Needs and Rehabilitation of Kyambogo University by the (Amendment) University and Other Tertiary Institutions Act, 2003. However, the role, powers and composition of the former UNISE and 284

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda now Faculty of Special Needs and Rehabilitation of Kyambogo University remain identical.

The UNISE Act does not directly focus on CwDs but create an institute that primarily focuses on building the human resource in form of special needs teachers, community social workers and other professionals to support the education of CwDs at all levels. The Faculty is also in charge of creating the conditions for the realisation of education of children with special learning needs.

The Faculty of Special Needs and Rehabilitation of Kyambogo University has various functions. Primarily, the Faculty trains SNE teachers who will teach CwDs and special need children at all education level (UNISE Act, Section 4 and Section 5(a) and (g)). The Faculty offers Degrees and Diplomas to interested Ugandans through training them as special needs teachers, community rehabilitation officers, social workers and development workers, among others (UNISE Act, Section 5 (k)). The Faculty must also provide long distance courses (UNISE Act, Section 5 (j)) and outreach services (UNISE Act, Section 4 and Section 5 (l)). The Faculty also runs a demonstration pre-school for the training and stimulation of CwDs and offer educational assessment of these children (UNISE Act, Section 5(i)). The pre-school has been established and supports education of CwDs. It must however be noted that the Act limits the training of teachers and other personnel who are in the field of SNE. It does not cover the training of teachers in mainstream schools to be able to teach to all children, including CwDs. This limits the provision of quality education to CwDs as they are not able to benefit from services provided in mainstream schools, which would thus become inclusive schools.

In addition, the UNISE Act requires the Faculty of Special Needs and Rehabilitation of Kyambogo University to develop educational materials, which is made accessible or provided in alternative format, to assist in the education of persons and CwDs (UNISE Act, Section 5 (d)).

Besides, the Faculty is required to carry out research in the field of SNE with the aim of improving access to education for PwDs and CwDs (UNISE Act, Section 4 and Section 5 (b)).

Finally, the Faculty is responsible to gather available information and disseminate it (UNISE Act, Section 4 and Section 5 (c), (e) and (f)) as well as raise awareness of school administrative staff (UNISE Act, Section 4) in relation to SNE. The composition of the governing council of the Faculty did not provide for a representative of pupils or students with disabilities but provided for three representatives of PwDs nominated by NUDIPU (UNISE Act, Section 7 (k)). The Guild President represents the students in the decision-making processes of the institution (UNISE Act, Section 7 (l)).

Conclusively, the UNISE Act, as amended by the University and Other Tertiary Institutions Act 2003, does not promote IE. It promotes SNE by training special needs teachers and professionals who teach to persons and CwDs (UNISE Act, Sections 4 and 5). It thus does not adequately comply with CRPD Article 24 which calls for the promotion and implementation of IE, over 285

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda special needs and segregated education.

Analysis

Achievements: The Faculty of Special Needs Education and Rehabilitation is in place to primarily train teachers in SNE. Thousands of teachers have been trained to teach to CwDs since its establishment.

Challenges: -

Recommendations

UNICEF Uganda should promote the training of all teachers in an inclusive manner. This would require the integration of a module relating to IE into the primary, secondary and university teacher training curricula. This will ultimately promote IE for all, including CwDs, in line with the CRPD Article 24. To do so, UNICEF Uganda should promote the inclusion of provisions relating to the training of –mainstream- teachers in IE in their curricula, whenever the Education (Pre-Primary, Primary or Post-Primary) Act and/or the University and Other Tertiary Institutions Act will be reviewed.

It should be noted that SNE benefits children with severe disabilities.

14.

The Draft Non Formal Education Policy for Educationally Disadvantaged Children, 2012 Ugandan national and local government institutions in charge

National Government Institutions in charge: MoES / Division for Non-Formal Education and Department of Special Needs Education (SNE) Faculty of Special Needs Education and Rehabilitation of Kyambogo University Office of the Prime Minister Ministry of Water and Environment Ministry of Local Government MoGLSD Ministry of Justice and constitutional affairs Ministry of Public Service MoFPED MoH 286

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Ministry of Agriculture, Animal Industry and Fisheries National Curriculum Development Centre Directorate of Education Standards (DES) Uganda National Examination Board (UNEB) Education Service Commission (ESC) Local Government Institutions in charge of implementation: District Department of Education (Non-Formal Education Programmes at specific district levels) Content of the Relevant articles and sections: legislation and/or Glossary policy

Educationally disadvantaged children: These are children of school going age who are experiencing social, cultural, regional, political, economic and environmental barriers to learning, and are directly or indirectly excluded from or denied the chance to optimally participate in the learning activities which take place in a formal or non-formal setting.

1.0 Background For purposes of this policy, educationally disadvantaged children are all such children “who are experiencing barriers to learning, and are directly or indirectly excluded from or denied the chance to optimally participate in the learning activities which take place in a formal arrangement but can benefit from the non-formal setting once opportunity is availed�. The children are educationally disadvantaged by the social, cultural, regional, political and economic environments in which they live. The age limit discussed starts from 6 years to 18 years.

Among the educationally disadvantaged children are the following: (k) Children with one or multiple disabilities including those who have difficulties in seeing, hearing, moving or overall difficulties in learning, or specific difficulties in language, whose parents do not perceive the value of taking them to school.

1.1 Statement of Intent of the Policy a) The policy will ensure equitable access to quality basic education for all children, in response to the barriers experienced by the children because of varied attitudes, gender disparity, socio-economic, cultural, and geographical barriers, conflict, various forms of abuse, orphanage, the need to work, ill health, drop out and push out. b) The policy will address the linkage between Non-formal and Formal education by establishing learning outcomes/ equivalences within the two systems and harmonising their curriculum to ensure that it complements formal education

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda provision.

1.3 Rationale of the Non Formal Education Policy Government in its commitment to provide basic education to all, agreed “to make basic education available to all citizens of Uganda irrespective of their age, sex, religion, disability, or region to which they belong” 346. i) To achieve this basic human right, Government has introduced Universal Primary Education (UPE), Universal Secondary Education (USE) , with emphasis on affirmative action in favour of the educationally marginalized children on the basis of gender, age, disability or other circumstances created by tradition, customs, imbalances, which exist in society, which has been successful. But it must be realised that one programme alone cannot address the needs of all children. This policy is however aimed at expanding access to relevant and quality education for all Ugandan children who cannot receive education in a formal setting. ii) This policy will be key in enabling the Ministry of Education and Sports meet both Millennium Development Goals (2 & 3) and EFA Goals by the year 2015. In view of this, therefore, there is need to: a) Address the inclusion of children out of school, who are often excluded because of the rigidity of the formal school system, by providing viable complementary education programmes; b) Strengthen and harmonise existing and future partnerships in on-going strategies for providing education to educationally disadvantaged children in Uganda but not creating parallel systems. The policy will provide practical means of putting in place a viable framework for the development and implementation of a genuine and sustainable partnership; c) Provide an opportunity for the review and harmonisation of existing policies with particular emphasis to addressing the rights of educationally disadvantaged children which include; girls, ethnic minorities, children with disabilities left at home and those in especially difficult and geographically isolated circumstances; and 1.5 Benefits of the Policy It is envisaged that the benefits of this policy will be: a) A rise in enrolment from its current level with the inclusion of more children from disadvantaged groups, including those with disabilities, girls, those affected by HIV/AIDS and orphans.

346

Government of Uganda, White Paper on Education, 1992.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 2.0 Situational Analysis 2.2.2 Instructional and Scholastic Materials i) There are children who cannot afford to provide any scholastic materials due to the nature of the circumstances that they have found themselves e.g child headed families, children in war affected areas, children of the nomads and children with disabilities who have been left at home.

2.4 Barriers to accessing education The policy is intended to address such concerns/barriers to children attending school. (j) Disability Most learning centres have varied categories of learners ranging from the under age, school age and on average. CwDs will find themselves in that category and should be provided in the non formal settings like the others.

3.0 Policy Vision, Objectives and Strategies 3.2 Policy Mission The mission of the policy is to: Support, guide, coordinate, regulate and promote delivery of quality and relevant Non Formal Education services to educationally disadvantaged children.

3.3 Policy Objectives The policy objectives of Non Formal Education programmes for educationally disadvantaged children’s policy are to: a) Initiate, strengthen and streamline all Non Formal Education programmes and services targeting educationally disadvantaged children; b) Articulate the definition of educationally disadvantaged children, highlighting their concerns, needs and aspirations for appropriate interventions, including their own involvement and participation in social, educational, economic, cultural and political aspects; c) Promote educational empowerment of the educationally disadvantaged children; d) Build capacity and provide relevant training among stakeholders working to provide basic education for the educationally disadvantaged children; e) Mobilise resources for basic education programmes and projects for educationally disadvantaged children; f) Increase the involvement in decision-making, leadership and community participation for improving their socio-economic status; 289

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda g) Provide psycho-social support and other services to educationally disadvantaged children in their particular circumstances.

Explanations: The overall aim of Draft Non formal Education Policy for Educationally Disadvantaged Children is to equalise the provision of relevant and quality education to vulnerable and marginalised categories of children especially those who cannot benefit from the formal education system. The 1995 Constitution of Uganda requires Government to provide education services to all citizens (Article 30) and to take affirmative action in favour of marginalised and vulnerable categories of children, including CwDs, in that respect. This Draft Policy requires Government to support and coordinate the provision of nonformal education services to vulnerable children including CwDs (Section 1(1), (2) and (3)).

This Draft Policy targets vulnerable and marginalised categories of children who have been excluded to benefit directly or indirectly from the formal education because of the social, economic, political and cultural barriers but can benefit from the non-formal education. This includes all CwDs (Section 1 (k)).

This draft Policy recognises that non-formal education should be provided to CwDs in general, because they are stated as one of the disadvantaged groups to benefit from the non-formal education programme. However the situation analysis of the draft Policy relating to CwDs is incomplete: it does not show how many CwDs were enrolled or how teachers can provide training to CwDs. It does not outline the specific barriers limiting access to education for the diverse categories of CwDs nor does it provide appropriate intervention to address them (Section 2 (4) (j)). Without a proper assessment of the situation, the draft Policy cannot describe the necessary measures to be taken and implemented to tackle the issues relating to CwDs. The draft Policy calls for harmonisation of the existing policies to ensure that CwDs are enrolled in non-formal education institutions and benefit from the non-formal education with provision of the necessary materials. The policy also requires Department of the SN&IE to lead the MoES to implement the policy with support from other ministries and stakeholders (Section 4).

The draft Policy contains some references to CwDs. It states that “CwDs cannot pay for instructional and scholastic materials (Section 2 (2) (2))”. The draft Policy also recognises that the vocational education curriculum is not adapted to CwDs (Section 2 (4) (3)). However, the draft Policy does not foresee measures in relation to the construction of accessible school infrastructure, the provisions of scholastic and instructional materials and the adaptation of curriculum, what is required to enables CwDs to access -non-formal- education.

To conclude, although the draft Policy refers to CwDs as an educationally disadvantaged group, it does not outline the 290

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda specific needs of all categories of CwDs. Analysis

Achievements: This Policy is still a draft policy and it is therefore too early to measure any positive or negative impact.

Challenges: This Policy is still a draft policy and it is therefore too early to measure any positive or negative impact.

Recommendations

15.

UNICEF Uganda should work in partnership with the MoES to ensure that, during the implementation of the Policy, the needs of CwDs are addressed and those appropriate interventions are put in place to enable CwDs to access education.

Training of SNE/IE non-formal education teachers and provision of accessible scholastic materials are some of the areas where UNICEF Uganda can invest to support non-formal education of CwDs. Supporting the inclusion of CwDs in the existing non-formal education programmes is also crucial: the building of accessible classrooms and facilities as well as the provision of materials for CwDs contribute to making a big change in the opportunities of CwDs to attend school.

The Draft Non Formal Education Policy for Educationally Disadvantaged Children should prioritise CwDs by, first, detailing and outlining the non-formal educational needs of CwDs and, second, taking appropriate interventions to enable them access non-formal education skills at all levels.

Assessment of –the various needs of- CwDs, adapted curriculum, accessible training centres, disability user friendly instructional and scholastic material and affirmative action in favour of their enrolment in mainstream schools are some of the elements that should be integrated in this draft Policy. It should also be linked to the draft Policy in SN&IE to help in defining the needs and interventions required to implement the rights of CwDs to access –inclusive- education (CRPD Article 24).

The Draft Policy on Special Needs and Inclusive Education, 2011

Ugandan national and local government institutions in charge

National Government Institutions in charge: MoES / Department of Special Needs and Inclusive Education MoFPED Ministry of Public Service Ministry of Local Government MoGLSD 291

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Ministry of Internal affairs Ministry of Works and Transport Ministry of Information and Communication Technology Parliament of Uganda National Curriculum Development Centre (NCDC) Uganda National Examinations Board (UNEB), Uganda Business Technical Examinations Board (UBTEB) Uganda Allied Health Examinations Board (UAHEB) Uganda National and Midwifery Examinations Board Directorate of Industrial Training Universities Local Government Institutions in charge of implementation: District Department for Education Content of the Relevant articles and sections: legislation and/or 1.0 Background policy

1.1 Statement of intent for the Policy The Special Needs & IE Policy will seek to mitigate factors that form barriers to children’s participation in learning and development arising from both; the individual learners (e.g. disabilities), factors influenced by environment and teachers modes/methods of delivery.

3.0 Policy Vision, Mission and Objective 3.1 Vision Learners with special educational needs accessing quality education services equitably.

3.2 Mission To co-ordinate and support the provision of special needs and IE services to meet the educational needs and rights of learners with special needs.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 3.3 General objective To deliver SN&IE services in a coordinated and adequately resourced manner.

Specific objectives i) Increased enrolment, participation and completion of schooling by persons with special learning needs. ii) Strengthen and systematize existing initiatives/programs on SN&IE. ii) Enhance participation of stakeholders in the management and implementation of SN&IE programs in Uganda. iv) Promote sporting programs for learners with special learning needs.

3.4 Policy Target Group The Policy targets learners with special learning needs (barriers to learning and development) who shall include learners with; i) Intellectual Impairments, ii) Specific Learning Difficulties, iii) Hearing Impairment, iv) Visual Impairment, v) Physical Impairments, vi) Health Impairments, vii) Speech and Language Disorders, viii) Social, Emotional and Behavioural Difficulties /Disorders, and those who are; Gifted and Talented, ix) Left handedness. x) Multiple disability (a combination of two or more impairments).

Explanations: Article 30 of the 1995 Constitution of Uganda promotes the right to education for all. To address the imbalance in access to education by CwDs, the Constitution of Uganda provides for equalisation of opportunities and protection and promotion of the rights of PwDs including CwDs under Articles 32 and 35 respectively. The draft SN&IE Policy aims to ensure that CwDs have equal access to education to the same extent as children without disabilities. This is also required by the 1995 Constitution of Uganda, CRPD Article 24 and CRC Articles 23, 28 and 29.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda This draft Policy in SN&IE focuses on the provision of educational services to all CwDs using different approaches such as SNE, IE and integrated approach depending on the needs of children. The Policy promotes special education for pupils and students with severe and profound disabilities: specialised education services are provided in a special and separated school (or class) (Sections 1 (3), (4) and (5), 3 (2) and (3) and 7 (2)). Integrated education provides co-existence between CwDs and their peers without disabilities. Children with and without disabilities learn in the same class for some lessons (e.g. Mathematics) part of the day and CwDs attend other lessons the rest of day (e.g. Braille reading and note taking) in separate classrooms, called Units/Annexes, in schools (Section 7 (2) (1), (2) and (3)). IE means that children with and without disabilities attend the same class all day long.

The SN&IE Policy targets learners with special learning needs, who have “barriers to learning and development”, and these include learners “with intellectual disabilities, specific learning disabilities (e.g. people with autism or Down Syndrome), hearing disabilities, visual disabilities, physical disabilities, health illnesses, speech and language disorders (e.g. dyslexia), social, emotional and behavioural disorders (e.g. people with depression or bipolar disorder), those who are left handed and who have multiple disabilities (i.e. a combination of two or more impairments) (Section 3 (4)). The SN&IE Policy covers a wide range of CwDs. However, left handed people, who are surprisingly mentioned under the target group, are not considered PwDs according to the CRPD. The draft Policy in SN&IE provides a policy and implementation framework to address the barriers limiting access to education for CwDs. In the assessment of the current situation, the MoES evidences that schools lack ramps to access classrooms, accessible toilets and other school facilities, SL interpreters, Braille papers and SNE teachers, among other barriers, to support the education of CwDs (Section 2).

IE embraces modifications in curricula, teaching methods and teaching/learning resources. The draft SN&IE Policy provides for training of teachers in SNE/IE, SL specialist, therapist and other professionals who are considered as a resource in provision of SNE and IE (Section 5 (6)). It highlights the training gap to realise the minimum number of SNE teachers, who are needed, to meet the minimum standard ratio (Section 2(3)). The training of SNE/IE secondary school teachers has not been realised yet (Section 2(3)).

The draft SN&IE Policy further recognises the lack of accessible curriculum to all learners with disabilities and emphasizes adapted curriculum that would enables the design and use of disability friendly materials and access to education by CwDs (Section 5.7).However the draft SN&IE Policy does not highlight how the adapted curriculum for all educational level would be produced. It also recognises that the curriculum for education training institutions is not adapted to children and learners with disabilities either (Section 2 (4) (3)).

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda The draft SN&IE Policy recognises access to building and information as a key element in educating CwDs (Section 2 (4)).

However it is noted that many schools are not physically accessible as they lack ramps for example. Most of them do not follow the infrastructure accessibility standard tool approved in 2009. Additionally, IE require to embrace modifications in adjusting the learning environment and medium of communication to meet the individual learning needs of CwDs. Lack of SL interpretation and brailed information also hinders access to information and communication for deaf, blind and deaf blind children respectively (Section 2 (4)). The draft SN&IE Policy does not recognise easy to read format as a means of access to information for children with intellectual disabilities such as children with autism or the use of tactile language which enables deaf blind children to access information and communication either. It focuses more on the accessibility needs of children with physical and sensory disabilities (Section 2 (4) (2)).

Finally, the draft SN&IE Policy recognises the inconsistencies in the law and their implementation, especially regarding the funding of education of CwDs (Section 2 (11)). The PwDs Act requires 10% of the education budget to be allocated to address the educational needs of learners with disabilities. Limited funding has been affected to the provisions of education services to pupils and students with disabilities.

Finally, the draft SN&IE Policy was adopted by the top management of the MoES and is waiting for Cabinet approval. This is not yet in place and changes can still take place.

Analysis

Achievements: This Policy is still a draft policy and it is therefore too early to measure any positive or negative impact.

Challenges: This Policy is still a draft policy and it is therefore too early to measure any positive or negative impact.

Recommendations

First and foremost, UNICEF Uganda should advocate for the Government of Uganda to affirm its commitment to IE and develop an IEal policy with clear resources ring-fenced to implement the policy. There is a need to establish political leadership and government responsibility for IE in order to provide and deliver services in a well-coordinated, cross cutting and adequately resourced implementation system at all levels through clear guidance and policy.

The draft SN&IE Policy, when adopted, will only outline the implementation framework to address the educational needs of learners with disabilities. It is a non-binding instrument and does not have legal implications. Considering the fact that the Education Act does not address the diversity of the needs of learners with disabilities and recalling Article 35 of the 1995 Constitution of Uganda, which requires Parliament to enact laws that promote and protect the rights of PwDs, there is a need to enact an “Individuals with Disabilities Education Act” to equalise education opportunities for learners with disabilities. This would also allow the realisation of the allocation of the 10% of the education budget to address the 295

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda educational needs of learners with disabilities as stated in PwDs Act. Such a new piece of legislation should be supported and promoted by UNICEF Uganda.

UNICEF Uganda should also support the advocacy efforts aimed to ensure that the Cabinet adopts this draft Policy as early as possible in order to enable its implementation.

Finally, the SN and IE Department of the MoES has limited technical and financial capacity to support the realisation of the right to education of CwDs. The Department should be upgraded to an inclusive and SNE Directorate to support effective coordination and implementation of the provisions of high-quality educational services to pupils and students with disabilities. A Directorate will acquire more human and financial resources than a department. An “Individuals with Disabilities Education Act”, which was suggested above, could provide for the establishment of such an inclusive and special needs Directorate to target all levels of education, from pre-primary to tertiary and vocational education of children and young PwDs. UNICEF Uganda should support such an effort.

16.

The Second National Health Policy, 2010

Ugandan national and local government institutions in charge

National Government Institutions in charge: MoH / Disability and Rehabilitation Department and Mental Health Department Local Government Institutions in charge of implementation: District Department of Health

Content of the Relevant articles and sections: legislation and/or 2 The Situational Analysis policy

2.2 Social determinants of health There is limited physical accessibility of health facilities especially for PwDs. 2.8 Health Resources 2.8.2 Medicines and Health Supplies Inadequate financial and human resources, capital investment and management issues have resulted in the public sector being unable to fulfil its mandate of providing medicines to meet the requirements of universal access to health care. Only 30% of the essential medicines and health supplies (EMHS) required for the basic package are provided for in the

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda framework for medium expenditure. This has increased dependency on the private sector. […]

Weaknesses in supply chain management such as poor quantification, delays in procurement, inappropriate and late deliveries, late orders from facilities and poor record keeping contribute to shortage and wastage of medicines in the public sector. Shortage of raw materials for assistive devices makes them unaffordable to PwDs. 3.0 The Development context 3.1 The International context The NDP reflects and spells out the international initiatives to which Uganda is a signatory and these include the Millennium Development Goals (MDGs), the International Conference on Nutrition, the Convention on the Rights of the Child, the UN Convention on the Rights of PwDs, the International Conference on Population and Development, the New Partnership for Africa’s Development (NEPAD), the Paris Declaration on Harmonisation and Alignment, the International Health Partnerships and related initiatives (IHP+) and the Abuja Declaration among many initiatives. Uganda renewed her commitment to Primary Health Care (PHC) at the 2008 Ouagadougou Conference.

4. Vision, Mission, Goal and Guiding Principles 4.1 Vision A healthy and productive population that contributes to socio-economic growth and national development.

4.2 Mission To provide the highest possible level of health services to all people in Uganda through delivery of promotive, preventive, curative, palliative and rehabilitative health services at all levels.

4.3 Goal To attain a good standard of health for all people in Uganda in order to promote healthy and productive lives.

4.4 Social values This policy puts the client and community at the forefront and adopts a client-centred approach with consideration of both the supply and demand side of healthcare. The following social values, as detailed in the Constitution of Uganda and Uganda’s Patients’ Charter, will guide the implementation of this policy.

4.4.1 The right to highest attainable level of health: The Constitution guarantees rights of all people in Uganda to access basic health services.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda 4.4.2 Solidarity: Government will give due consideration to pursuit of national solidarity in its attempt to achieve healthrelated MDGs with special focus on social health protection for vulnerable groups.

4.4.3 Equity: Government shall ensure equal access to the same health services for individuals with the same health conditions.

4.5.4 Gender-sensitive and responsive health care: A gender-sensitive and responsive national health delivery system shall be achieved and strengthened through mainstreaming gender in planning and implementation of all health programs.

4.5.5 Pro-poor and sustainability: This policy shall provide a framework to support sustainable development. The Government of Uganda shall also explore alternative, equitable and sustainable options for health financing and health service organisation targeting vulnerable groups.

5 Priority areas for the national health policy More than 75% of the overall burden of disease is preventable (First National Health Policy 1999). The focus for the NHP II shall be on health promotion, disease prevention and early diagnosis and treatment of disease with emphasis on vulnerable populations.

6.0 Policy Objectives and Strategies 6.1 Organisation and management of the national health system 6.1.2 Policy strategies 1 In order to achieve this policy objective, Government shall: (d) Design, pilot and implement appropriate service delivery models for hard-to-reach areas and disadvantaged population groups.

6.2 The minimum health care package The minimum health care package in Uganda shall consist of the most cost-effective priority healthcare interventions and services addressing the high disease burden that are acceptable and affordable within the total resource envelope of the sector. The package shall consist of the following clusters. (a) Health promotion, environmental health, disease prevention and community health initiatives, including epidemic and

disaster preparedness and response (b) Maternal and Child Health; (c) Prevention, management and control of communicable diseases

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda (d) Prevention, management and control of non-communicable diseases.

The composition of the package shall be re-visited periodically depending on changes in disease burden, availability of new interventions to address these conditions, changes in the cost-effectiveness of interventions and the total resource envelope available for service delivery and shall be based on available evidence. Greater attention shall be paid to ensure equitable access to the package including affirmative action for under-served areas, vulnerable populations and continuum of care.

6.2.1 Policy objective To ensure universal access to quality Uganda National Minimum Health Care Package (UNMHCP) consisting of promotive, preventive, curative and rehabilitative and palliative services for all prioritised diseases and conditions, to all people in Uganda, with emphasis on vulnerable populations.

Explanations: The NHP II, Promoting People’s Health to Enhance Socio-economic Development, 2010, is a follow up of the First NHP (NHP I) that last from 1999 to 2009.

The mission, vision and goals of the NHP II all aim to improve the health and welfare of all citizens, which of course include CwDs. Government must “ensure equal access to the same health services for individuals with the same health conditions” (Section 4 (4) (3)). The Policy calls for mainstreaming gender in planning and implementation of all health programs (Section 4 (5) (4). It also highlights the specific needs of vulnerable population: Government must “explore alternative, equitable and sustainable options for health financing and health service organisation targeting vulnerable groups” (Subsection 4 (5) (5)).

The NHP II focuses on “the health promotion, disease prevention and early diagnosis and treatment of disease with emphasis on vulnerable populations” (Section 5). There is no definition of what the MoH means by vulnerable population in this Policy. Although CwDs are not specifically mentioned, it can reasonably be assumed that the NHP II covers them under the general population, disadvantaged and vulnerable groups stated in the Policy.

While assessing the current situation of the health sector in Uganda, the MoH has identified two barriers hampering persons and CwDs to benefit from health services. The Policy recognises inaccessibility of health centres and hospitals (Section 2 (2)) and the limited finance and human resources limit the provision of assistive technologies (Section 2 (8) (2)).

Additionally, the Policy makes reference to the CRPD as part of the international legal framework (Section 3 (1)).

Several measures foreseen in the NHP II are directly relevant to PwDs and hence CwDs.

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Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda Government must “design, pilot and implement appropriate service delivery models for hard-to-reach areas and disadvantaged population groups” (Section 6 (1) (2) (d)). This should enable CwDs who are among the hard to reach group to access health services.

The NHP II also makes references to the UNMHCP. This consists of “the most cost-effective priority healthcare interventions and services addressing the high disease burden that are acceptable and affordable within the total resource envelope of the sector” (Section 6 (2)). The provision of the minimum health care package provides for “equitable access to the package including affirmative action for vulnerable populations and continuum of care” (Section 6 (2)). Access to rehabilitation services, which would benefit PwDs and CwDs directly, is also one of the mission of the MHP II (Section 4 (2)) as well one of the specific objective of the UNMHCP (Section 6 (2) (1)).

Conclusively, despite the few references to the CRPD and the needs of PwDs, the NHP II is not adequately in line with CRPD article 25, CRC Articles 24 and 25 that require the recognition of the health rights of CwDs and all children respectively.

Analysis

Achievements: Challenges: The NHP II does not effectively support the progressive realisation of the CRC and CRPD because it does not outline the different categories of CwDs and their health needs. It should be noted that the vulnerable population is diverse with different health needs and challenges. In this respect, the NHP II should outline the health needs and approaches such as limited access to information and communication messages, inaccessible health centres, among others.

“In a study of the challenges faced by PwDs in accessing health services conducted by Dr. B. Nganwa et al 1998 (unpublished), it was found out that “health units are not accessible to the physically disabled because the maternity beds are high and latrines inaccessible. For persons with visual impairment, the deaf and intellectually impaired persons, health information was neither accessible nor was it easy to communicate with health workers as they were not well versed with SL. Compounding these challenges was the negative attitude of health workers towards PwDs.” Furthermore, where health care services were accessible, the negative attitudes of the family members reduced access to them and worsened the situation to the inaccessible ones.”

Recommendations

UNICEF Uganda should work with the MoH by supporting the establishment of accessible building and health centres, the training of health workers on how to provide health services to different categories of PwDs, the provision of accessible hospital beds and assistive devices such as hearing aid, white cane, glasses, wheel chairs and others.

UNICEF Uganda should also support the mainstreaming of the perspective of CwDs in all health related programmes and 300

Research Study on Children with Disabilities Living in Uganda – Situational Analysis on the Rights of Children with Disabilities in Uganda activities to ensure that the programmes address their needs through a partnership with the Disability and Rehabilitation Department of the MoH to support rehabilitation and access to health services. In particular, the NHP II should be reviewed to be line it with the CRPD and the CRC especially outlining the health needs of persons and CwDs. The approaches to address the health challenges faced by PwDs and CwDs should be clearly described and detailed measures to tackle the current problems of PwDs and CwDs in accessing health services should be provided.

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