Community Lives Program Design Document

Community Lives in UTTARAKHAND

Contribution, community, and dignified lives for women with developmental disabilities

Community Lives Project, Uttarakhand

Executive Summary

It is becoming apparent under Indian law that the full integration of people with disabilities into everyday life is desirable and necessary. This includes integration in the area of education, livelihood, employment, recreation, access to community, and, of course, living situations. The full legal and human rights of people with disabilities cannot be exercised without access to everyday Indian life.

For people with intellectual disabilities who cannot, for any number of reasons, live with their biological families, there are few options, and institutionalization into congregated, segregated shelter homes has been one of those few options. Now it is time to lead the way by demonstrating that people with developmental disabilities can live fully integrated lives in the community, and will contribute meaningfully to the life of the community. Uttarakhand is poised to break ground by showing that there are feasible alternatives to segregated, institutional models of custodial care.

We propose to establish two Community Homes under Community Lives initiative, in which eight women with developmental disabilities will live – four in each home. Each home will be well-supervised with trained support staff, will receive medical and clinical support as needed, and will participate in all aspects of community life.

History

In India, and throughout the world, people with disability have experienced rejection, segregation, and poor treatment at the hands of society. One expression of this rejection has been to institutionalize people with developmental disabilities into separate institutions where they lose connection to typical life, have much less opportunity for growth and development, and become isolated and de-individualized. Despite the best efforts to try to improve the conditions in such places, poor treatment is common, abusive practices tend to thrive, and most people who live there yearn for a typical life. Within India, the strongest focus has been to find solutions for aging families who have cared for their adult children with disability at home, and are looking for long-term options for when they are no more. Few are paying attention to the needs and well-being

Purpose of this Document

of people with developmental disability languishing in institutions, with few family ties and no one advocating for them. Across the world, the legacy of institutions is one of hardship, deprivation, and efforts to improve them has largely been a failure. In India, the number of institutionalized people with developmental disabilities is unknown and unreported, but we do know that facilities such as Nari Niketan are present across all states, and this project serves as a progressive exploration of government and private organizations working together to create Indian alternatives that offer better options for families and people with disability.

The purpose of this document is to outline overall procedures for the program, give guidance for operations, and describe the basic framework for service. It is to be considered the property of Keystone Human Services International and is available for the use of the 5 partners and associated staff and consultants of the Community Homes project, and is not to be further copied or distributed without express permission of Keystone Human Services International.

A Committed Collaboration

“Community Lives’ represents a collaboration between the Government of Uttarakhand (Department of Women and Child Development) and The Hans Foundation. Under this initiative of Community Lives, above partners have agreed to establish too Community Homes in Dehradun. They have launch and fund a program to support eight women to move from the Nari Niketan facility for women with developmental disabilities to two integrated community residences in the year 2019. In this agreement, it was specified that an Implementation Partner and a Technical Assistance Partner would be identified. Herbertpur Christian Hospital Society has been identified as the implementation partner, which will operate and manage the services, and Keystone Human Services International Liaison Office (informally called Keystone Institute India, or KII) will serve as the technical assistance partner, providing support training, program design, guidance, and assessment. Each of these partners has agreed to work together collaboratively and seamlessly to provide high quality, responsive services to the women so they have experience the same good things of life in Uttarakhand which are available to valued citizens.

CONTENTS

Section 1: Our Shared Values And Philosophy Of Support

Section 2: Definition: Community Homes

Section 3: Broad Objectives

Section 4: Partner Roles And Responsibilities

Section 5: Physical Setting And Location

Section 6: Selection Of People Served

A. Assessment

B. Selection And Matching

C. Transition

A. Personal Transition

B. Legal Transition

C. Documentation And Eligibility For Funds And Programs

Section 7: Developmental Programming

Section 8: Overall Outcomes Of Model: Data Collection

Section 9: Staffing And Support

A. Staffing Table Of Organization

B. Selection

C. Training

D. Day-To-Day Management And Supervision

E. Programmatic Support

F. Clinical Supports

G. Staff Profile Of Community Support Workers

Section 10: Accountability, Safeguarding, And Adverse Events

Section 11: Family Relationships

Section 12: Household Routines

Section 13: Budget And Finance

Section 14: Decision-Making And Autonomy

Section 15: Continuum Of Support

Section 16: Medical Support

Section 17: Immediate Action Procedures

Section 18: Annexure

Shared Values and Philosophy of Support

Our Vision

Our vision is to create a society in which people with disability have rich, full, and meaningful lives, which include home, friends, work, valued presence, and full participation in their communities.

Our Values

We believe in the sanctity (preciousness, sacredness) of all human life.

This belief guides us to approach our work with a deep recognition that each and every human life has value, that true equality among all people must be what our efforts are working towards. Everything we do within our partnership must work towards recognizing and honoring each human being, including those with disabilities. Within this belief lies our shared understanding that vulnerable people must be seen as unique individuals, that disability must be understood from a social perspective rather than a medical one, and that safeguarding the welfare of vulnerable people will include fostering both people and organizations becoming strong and more independent, freed from dependence and marginalization. To accomplish this, we will always promote and model individualized, person-centered processes that keep the welfare of people and society at the heart of our work.

We believe that all people should have access to the universal “Good Things of Life”.

The good things of life include such universal human needs as home, friends, family, community membership, financial stability, being respected by others, and experiencing normative freedom and autonomy within the society. We recognize that it is having valued social roles which bring this well-being to all people within all societies, and all that we do will contribute to people with disabilities having valued and authentic roles within Indian society and their local communities. Implicit in this belief is the recognition that segregation and congregation of marginalized people inevitably leads to poor treatment, and we will assure that our shared efforts are always moving towards inclusion in normative, everyday life, and away from segregation and separation by disability. In particular, we believe in the natural authority of families, as they know their family member and deeply identify with them in ways that professionals and care-givers rarely can.

We believe that all our

efforts should contribute towards an improved quality of life for all people, and that the welfare of human society as a whole depends upon the well-being of each member.

A society learns to embrace and celebrate its own natural diversity only when it engages in everyday life side-by-side with people who may be considered different. Tolerance, respect and dignity afforded to people with disability will be facilitated by assisting such people to live in typical ways, and experience many of the natural pathways of Indian life. All that we do and say should portray a positive

interpretation of people with disability, through our language, behaviour, media, and action.

We believe we have an obligation to keep our promises.

To work towards the freedom and equality of others, we must, first and foremost, keep our promises to vulnerable people and those who care about them. Trust must be earned. Partnerships with all facets of government, people with disability, family groups will be marked by honesty, responsiveness and will work towards developing services that are both relevant to people’s needs and effective at meeting those needs. Only in this way will wariness turn to trust and shared commitment.

We believe that all people have enormous lifelong potential to grow, learn and achieve and bring these positive expectations to all our shared work.

Those high and optimistic expectations apply to us as a partnership, to people with disabilities, to families, and to organizations. They will be reflected in the education we provide, in the way we advocate, and in the services we promote. We have an obligation to apply these high developmental expectations to the most vulnerable populations, including people from rural areas, people living in deep poverty, and people experiencing the most deeply devalued impairments and disabilities. We recognize that many people with disability will require some support across the lifespan, and such support must be flexible, responsive, and adaptable over time.

Statement of Program Philosophy

It is the intent of Community Lives to assure that all people receiving services are treated with dignity and respect and in a manner that is consistent with our vision and the principles of Social Role Valorization (SRV). We believe that we have an obligation to develop and mentor strong and powerful leaders to carry the work of creating a just and inclusive society. Finding, developing, equipping, and connecting emerging leadership will bring our foundational work into the future. We will seek those who authentically desire change, those who identify deeply with vulnerable people, and those passionate about working for change. Humility, deep commitment, and the will to translate ideas into action are characteristics we will seek, nurture, and build in everything we do.

Definitions

The following definitions are offered for clarification:

Principles of Social Role Valorization (SRV): Social Role Valorization is a theory based in the social sciences which describes how groups of people in a society who are seen as different and valued negatively are treated by that society. It predicts the likely social outcome for such devalued groups and suggests ways in which such

groups and individuals may be protected and/or defended from further harm, the benefits of assisting such people to move into valued social roles, and the concrete steps to help people be successful.

Dignity: Worthy of respect and honor.

Respect: Esteem or positive regard for a person.

Autonomy: The independence and freedom of a person to self-govern.

Rights: That which is due to anyone by just claim, legal guarantees, moral and ethical principles.

Choice: An act of selection. Choice implies the opportunity to select a preference from two or more alternatives. Implicit in choice is the idea that there is sufficient information to make an informed choice in order to decide between one thing and another.

Informed Choice: Having sufficient information to make a judgment about a selection or decision. Implicit here is the idea that people when given adequate information and education can make effective decisions.

Translating Values into Action

Operations will reflect the mission of the program and SRV including but not limited to the following:

• Human resource processes

• Public relations information

• Services and supports

• Quality outcome measurement

• Educational programs for staff and other stakeholders

Operations will support the following core activities within each of the two homes:

The establishment promotion, and support of valued social roles for people served

The development and teaching of competencies and skills

Social and physical inclusion

Conscious use of image enhancement on behalf of all people associated with Community Homes and the physical location of all services, and service activities

Individualization, self-determination, and person-centered supports

The principle of home, friends, family, work, community presence, and full inclusion

Respect for personal human service

Servant leadership

Choice and control

Use of the culturally valued analogue

Partnership with families

Efficiency, relevance, and potency in service delivery

The importance of opportunity for reflection

Enhancing the physical and mental health, safety, well-being, and security of the women served, and safeguarding for vulnerability.

Terminology and its use

A language of acceptance will be used in reference to all people associated with this program and in all communications regarding the work of the program, including language to and about the people we serve.

Language has historically been used as a powerful force allowing segregation, separation, and devaluation of others. Confronting language forces a struggle with basic values and attitudes. Language is a public window on our deepest feeling about those attitudes.

We request that, for example, referring to the people served as children, patients, or inmates be avoided, while normative, respectful terms be used that convey adult standing and citizenship. For example, the women living in the home could be referred to using their names, using titles of honor dependent on their age, or referring to them collectively as the “women we serve”.

All stakeholders are expected to use language which is understandable, familiar, culturally valued and which conveys a positive message about the person. Organizational leaders will model this expectation for all stakeholders.

Definition of “Community Home”

Community Homes for adults are home settings procured and administered by a service provider in which one (1) to five (5) adult with developmental disabilities live together.

• Communities Homes are monitored, and professionally-staffed 24 hours a day, 7 days a week, 365 days per year.

• Services provided in Community Homes support people within their communities and in the natural setting of a home. Trained, caring employees provide personal assistance, teaching, companionship, and therapeutic services. Services are provided to assist individuals in acquiring, retaining, and improving self-help, socialization, and adaptive skills. Supplementary community and home-based supports are provided as determined by individual need.

• All Community Homes must be fully integrated and dispersed in the community, and indistinguishable from the other homes in the neighbourhood. These are typical community dwellings, including apartments, duplexes, houses, etc. Community Homes look and feel like a “real” home, and are not clustered together with other services, human service programs, or other Community Homes.

• Within both of these residences, each resident will have an individualized support plan, with developmentally appropriate goals and objectives.

• The homes will be appropriately staffed for both safety and supervision, and will provide ongoing teaching training in household skills, recreation, self-care, finances, self-advocacy, education, and personal interest development.

• Fully qualified specialists in vocation, speech, occupational, behavioural support, counselling and physiotherapy will be available and provided as needed.

Broad Objectives

Objective #1

To provide safe housing, care, and support to previously institutionalized women in a typical home, helping them to experience good lives.

Objective #2

To demonstrate the high developmental growth that is possible in non-institutional, high quality community settings, and the ability of people with developmental disabilities to grow, thrive, and contribute to their communities.

Objective #3

To demonstrate that such community-based residential services can be provided by private/public partnerships, with ongoing government support, both financial and in concept, to assure sustainability over time.

Partner Roles and Responsibilities

Department of Women Empowerment and Child Development, Government of Uttarakhand (Government Partner)

The Government of Uttarakhand will support the project through their leadership and their commitment to transforming the landscape for people with disabilities in Uttarakhand. They will facilitate the critical cooperation between institutional staff, Department officials, and the private organizations which are in league together. They will make resources available through government schemes, allotments, and permissions, and are committed to taking over full funding for this project over time. This critical function makes this project unique, as few states in India have taken on a responsibility to provide care and support to people with developmental disabilities in community settings, widely recognized as best practices both in India and internationally.

Herbertpur Christian Hospital Society (Implementing Partner)

The implementing partner will take the lead in implementing the entire plan in close coordination with THF and its technical partner and other Parties to this MOU. The implementing partner will be 100% funded by THF for all start-up costs, and for further operations. The operating name for the project will be “Community Lives”, which is consistent with the purpose and mission of the program and does not convey a medical image. The official name of the project will be “Community Homes” in ine with the MoU which has been signed by Government of Uttarakhand with the Hans Foundation.

The Hans Foundation (Funding Partner)

The Hans Foundation agrees will provide full funding for the start-up costs, and additionally, the ongoing running costs of two community homes under a separate agreement with an implementation partner. Any major assets purchased for these community homes, including real estate, remain the property of The Hans Foundation. The Hans Foundation along with technical partner will monitor and evaluate the progress of the programme on periodical basis. THF along with its technical partner will train, staff, and conduct monitoring and evaluation studies.

Keystone Human Services International LO, operating as Keystone Institute India (Technical Partner)

KHSI will design and lead the assessment process, develop and approve the policies in collaboration with Herbertpur Christian Hospital Society, approve procedures and operations for the community homes, design and conduct values-based training programs for all staff, and conduct monitoring and outcomes measurements. The Technical Partner will lead and support the developmental programming. The technical partner in consultation with THF, will develop a “Project Document” detailing all macro/ micro level guidelines, roles and responsibilities, policies, procedures, operational aspects & monitoring plans and will further supervise the planning processes for each individual using a team approach. The above said ‘Project Document” would be the guiding document for all collaborating Parties in running the programme. The Hans Foundation along with technical partner will monitor and evaluate the progress of the programme on periodical basis.

Oversight

Herbertpur Christian Hospital Society (HCHS) will be responsible for the management and implementation of the community homes, and oversight will be provided by a Joint Steering Committee (JSC), to be constituted by the parties as per the MoU between Govt. of UK and THF. The JSC will analyse the initial two years of operations and outcomes data to determine the appropriate ongoing running costs and level of funding of the program moving forward. The level of funding will need to be sufficient to appropriately support the women in these new community homes at a high enough level to maintain quality staffing and services, as determined by the Joint Steering Committee, and helping the women reach the goals set in their support plans, while at the same time be at a level that motivates ongoing, unwavering support from Government and enhances the likelihood of model replication. The Joint Steering Committee will develop and agree jointly what the start-up costs and the ongoing running costs of these services should be for optimum sustainability. This level of

funding will be assessed by the Joint Steering Committee to assure appropriate level of support for the pilot phase, and the continuation phase of this new service model.

The team composition of steering committee will include:

a) Two representatives -Dept. of Women Empowerment & Child Development, GoUK

b) Two representatives - CEO and Executive Director, THF

c) One officer nominated by the Director General Health, Uttarakhand as their Nodal Officer for Women Welfare.

d) One Officer nominated by the Director General, Police as their Nodal Officer for Women Welfare.

e) Other Representatives – Implementing partner (HCHS) and Technical Support partner, (KHSI) and other Dept. officials will be invited.

Before the completion of 5 years of operations, the Joint Steering Committee will decide about the continuity of the services by the implementing partner. It is the intention of all parties that community placement is permanent for each of the women, and services should be provided to ensure this. Every effort will be made to assist each person to achieve developmental success, including increasing independence, and decreasing formal support over time as possible. The parties agree that the re-institutionalization of any women served by this program is highly undesirable, unacceptable, and inconsistent with international and national commitments under the United Nations Convention of the Rights of Persons with Disability (UNCRPD) and the Rights of Persons with Disabilities Act (India - 2016), and must be avoided.

Physical Setting and Location of Community Homes

The service setting will include two 3 BHK flats or free-standing homes located around Dehradun and the surrounding area with the following features:

• Close access to market and public recreational facilities such as parks, sporting facilities, theatres, public transportation, and other public venues for shopping, skill development, and community participation.

• Of typical/valued community standard in quality and type, blending in well with surrounding neighbourhood.

• Owned or leased via rental as available and preferred, with lease held by the implementation partner. Initially, the homes will be taken on rent.

• The home will be located in a safe neighbourhood, with adequate security and reasonably appointed.

• Each person served will share a bedroom with one or two residents, with maximum choices provided and flexibility in arrangements.

• One bedroom/bath will be reserved for support/care staff who will live-in with the residents.

• An adequate outside area will be provided, in the form of a terrace or yard, where the residents can engage in gardening or other outside activity.

• The homes will be located far enough apart to avoid community saturation, and close enough for mutual support and staff sharing.

The homes will be rental homes, but consideration will be given to purchasing such homes in the future.

Selection of People Served

Assessment

Collaborating Parties will conduct a team–based assessment of each woman over the age of 18 at Nari Niketan who has an intellectual or developmental disability (mental retardation, autism, cerebral palsy, or multiple disabilities) as determined by the records held at Nari Niketan, combined with interviews with the clinical team and with family members of the residents. Team composition will include Nari Niketan staff, HSHS staff, THF staff, and other specialists if needed, of all partners.

KHSI will provide leadership to the assessment teams. The initial screening assessment, to be developed by KHSI, will be designed to:

• Identify whether family reunification is possible, based in part on interviews with family members of each resident.

• Identify strengths, interests, capacities, personal needs, and support needs.

• Identify safeguards and level of service which would be required in a community setting.

• Identify whether she would be willing to move into the community, and if she is a good match for the proposed program and potential housemates/roommates.

An initial screening instrument will be used to narrow the list of potential candidates, to be followed by a more fulsome effort to get to know each potential candidate for the home using a personal profiling process. Once a potential group of people is identified, final decisions will be precluded by eligibility discussion, a significant communication with each person selected as to their willingness, and a final look at the family situation to determine engagement and potential possibility for such.

Selection and Matching

Collaborating Parties will determine the women who will move to the community home based on specific criteria focused on the following themes:

1. Developmental disability is present -Does she have a primary diagnosis of developmental disability?

2. Age - Is she over the age of 18?

3. Preference and willingness of the individual- Does she want to move?

4. Ability to identify appropriate and desired housemates- Does she have friends or likely people she may like to live with?

5. Low likelihood of family reunification

6. Length of time institutionalized at Nari Niketan (Longer stay residents are a priority)

7. Appropriateness of supports available in community home - Can her needs be met with the support we have in the community home?

8. Family agreement, if family is known, engaged or involved

If and when space opens within the community home after its initial opening, the women living there will have input into the decision to welcome a new housemate into the household, in line with normative autonomy. The interested candidate will have the opportunity to visit the home, share a meal, and spend an overnight in the home, before the final decision is made.

Transition

Program Transition: A support team comprised of the focus person, her family if desired and possible, staff from the residential team, program specialist, direct support staff, shelter home staff, medical specialist, and community representative will form the initial transition team which will lead the transition planning process. Once selected and agreement has been reached, transition activities will begin immediately. This will include a 2 month process of inter-program visits at the shelter, visits to intended site of community homes, familiarization and trustbuilding activities with the community home staff, information sharing and collaboration with the shelter home and clinical staff. It is anticipated the cooperative and positive relationships between all partners will result in an excellent and smooth transition, with all safeguards in place. Free information sharing and joint planning is built into the transition design.

An individualized transition plan will be developed by the support team for each woman, and will include the following 7 areas of tailored support:

• Health and Well-Being

• Home skills

• Community Participation

• Relationships

• Personal Adjustment

• Work and Livelihood

• Spirituality

Based on assessment and individualized plans, the women will be assisted with transition to the community home, and ongoing support will be provided in the form of 24-hour support, teaching and care assistance, personal care, healthy home-style meals, security and safety, developmental activity, vocational assessment and job support. Specialized support needs for each woman will be identified and arranged for during this period.

Transition will include visiting the new home, including an overnight visit, as well as the women helping to plan and set-up the home itself as appropriate and possible, making decisions about décor and set-up.

Legal Transition: Once identified, the women who will move into each home will be assisted to gain all the clearances and legal assistance to make it possible. The government will retain guardianship of each person. For nearly all, this will mean that the government will

1. Ensure each person has appropriate and adequate identification and documents, including Voter ID, Aadhaar enrolment and card, and other necessary documents.

2. Ensure each person is enrolled and accepted into all government schemes and programs for which they are eligible.

3. The designated representative will accompany each person to the magistrate to take permission for the move.

4. Provide a letter to grant each person permission to move, to provide to local police and others as required.

Individualized Program Planning

Once in the community, an annual Individualized Development Plan (IDP) will be designed with and for each person served. The IDP will guide the developmental activities for each person will be guided by the Program Specialist in collaboration with the person served and the team.

The IDP will be person-centered, and will be developed within 3 months of transition. IDP development will use a team approach and including the desires and interest of the person served. Training and supervision of the person-centered planning processes will be provided by KHSI. This plan will guide objectives and developmental goals in areas of health and wellness, home skills, community engagement, spirituality, relationships, personal adjustment, and vocation/work.

Each IDP will be reviewed and progress will be monitored on a six month basis or more frequently as needed, via both a written report as well as a gathered meeting including all team members to discuss accomplishments, identify roadblocks, and adapt the plan as needed.

Each person served will have access to developing a personalized livelihood or meaningful day activity suited to the individual interests and talents of each. Vocational profiling, job development, training and coaching will be provided under the supervision of KHSI so each resident has the opportunity to have work activities and a meaningful day, which may take a variety of forms. Participation in existing day programs, development of small business enterprises owned and developed by the women (with adequate assistance), volunteerism, mentored work, or supported employment are all potential ways this may be developed. Each person needs the opportunity to be fully and meaningfully engaged during the day, preferably outside the home.

Outcomes and Study of Model

In order for this first effort to be properly tracked and serve as a model, data and outcomes will be tracked pre- and post- placement. Systematic training, observation, quality monitoring, and outcomes tracking will be conducted by all engaged parties, with a focus on ensuring the safety and security of each resident, the growth of each person, and the measurable outcomes. The basic research question will be “Are the women better off in the community?”, and will involve scales on

1. Behaviour and personal adjustment

2. Perceived quality of life/satisfaction (individual interview)

3. Skills of daily living

4. Person Centered Planning

5. Integrative activities

6. Choice-making and autonomy

7. Productivity, independence, and meaningful day/work

8. Close relationships

9. Family and Satisfaction and support level

The above surveys will occur pre-placement, 6 months post-placement, and one year following placement, providing real documentation of the changes in the lives of each persons. This will becomes essential data to have as community based programs become viable alternatives to institutionalization in Uttarakhand and across India.

Staffing and Support

The basic staffing structure and positions will be as follows, with the actual number of positions to be determined by the needs of the women living in each home.

Joint Steering Committee, GoUK The Hans Foundation and KHSI: GENERAL OVERSIGHT Program

Selection

Each home will be staffed 24 hours per day by a team of Support Staff (SS) who will provide the core daily care and developmental activities. These workers will be selected and trained carefully, based on their:

• Ability to relate to the women served

• Willingness and demonstrated ability to provide coaching, support, training, guidance, and respectful and dignified supervision to the women living in the home in all aspects of daily life

• Excellent references and background clearances

• Staffing levels will be tailored to the individual needs of the women, but basic staffing levels will include one DSW during overnight hours, and a minimum of one DSW staff on duty during all other hours, with additional staff as necessary.

Training

A minimum two week training period will be provided to each SS, which will cover the following areas:

• Organizational Philosophy and Values

• Relational skills – with people with disabilities as well as the neighbouring community

• Program Implementation

• Abuse and Neglect

• Household management

• Community inclusion and integration

• Safeguarding and support

• Promoting valued social roles

• Developing positive community relationships

• Teaching skills

• Documentation Procedures

• Medication monitoring and supervision

• Effective and respectful behavioural support

• Immediate action and first aide

Management and supervision

Both homes will be supervised by the Project Coordinator (PC) who will be well qualified

with both a management and disability background, responsible for the operations, staff scheduling, day-to-day well-being of the women, and will spend significant time with the women served in a support role in addition to staff supervision and program management. The person in this position will also design and implement vocational and meaningful day activity for each woman in the home. Some administrative responsibilities will be delegated by the PC to a designated Home Services Coordinator (HSC) within the home, who, in addition to primarily providing live-in/24 X 7 direct support to the women, will also be allotted time to manage day-to-day administrative work.

Programmatic Support

Both homes will share a Program Specialist (PS), who will facilitate the developmental planning process for all of the women in both homes. This professional will have a background in psychology, education, or social work, and will be responsible for the completion of annual assessments, SRV use and advisement, inclusive practice advisement, the annual person-centered planning process, quarterly progress reviews, individualized goal plans, and individual program design. The Program Specialist will facilitate the use of all associated specialists in the “Specialized Services Pool” to be used for individual people as needed and identified in the Assessment and Annual Development Planning process.

Clinical supports

A range of supports and services will be provided as per the individual needs of each woman identified through her assessment. Such services will be provided on a contractual basis as required, and will include medical care, counselling, behavioural support, speech, occupational, and physiotherapy, educational tutoring and nursing care.

Staff Profile of Direct Support Workers (SS and HCC):

Responsible and trustworthy

Desire and ability to relate well to people with disabilities

An empowering yet protective mindset

Good social skills – friendly and outgoing

Excellent judgement

An effective role model in many areas

Connected and well-regarded in the local community

Willingness and ability to both participate in and teach all household responsibilities related to home

Willingness and ability to coach, accompany, and support people in a variety of community settings

Willingness and ability to encourage independence and self-sufficiency

Excellent role model

Well-organized

Interest and desire to learn more about the field of disability

Good communication and problem solving skills

Literate, able to follow written instructions, and to complete daily written documentation

Because of the specific vulnerability of the women served, female staff will be onsite and provide primary support to the women. Care will be taken to have excellent male role models and connections in place as well. Position descriptions available in ANNEX.

Accountability and Safeguarding

Each community home will be subject to monitoring and standards of all appropriate regulatory bodies. Levels of safeguards include the following:

1. Policies and operating procedures of ‘community homes’, developed by the implementing organization and self-monitored by organizational management

2. A collaborative assessment will be conducted by a selected team of trained program leaders, with the first assessment within 6 months of program start, and annually thereafter.

3. 24 hour on-call support will be available to the staff in the community homes, to provide backup support, assistance, guidance, or crisis management.

4. Appropriate security will be provided in each of the homes, first in the form of normative security located in access areas to colonies or apartment complexes. Being sensitive to the privacy of each woman served, CCTV will be considered for entrances and exits from flats or homes as is normative.

5. Excellent relationships will be developed with the local police and medical staff, to assure proper response and supportive assistance if necessary in the case of emergency

6. Each woman served will be supported in the development of self-advocacy skills –learning to express opinions safely, understanding appropriate and inappropriate treatment by others, self-protection, empowerment to speak out whenever they are not treated respectfully, and how and who grievances may be reported to. This will be the responsibility of the Program Specialist.

7. Adverse events: All adverse events and incidents will be reported immediately to

management via the 24 hour management support system, once immediate action is taken to assure the well-being of each person. Within 24 hours, notifications via an Adverse Event Report will be made to all appropriate parties including Guardian, The Department of Women Empowerment and Child Development, KHSI, HCHS, and THF. A detailed policy will be in place to assure this process is in place.

Adverse events are defined as: (1) illness or injury of a person served (2) hospitalization, (3)allegation of verbal, physical or psychological abuse (4) if a person served is missing or without supervision (if such supervision is required by assessment) (5) involvement of police, fire, or ambulance services, facility malfunction in major system (flood, fire), and (6) other adverse events as identified, notifications will be made to all appropriate parties including guardian, Department of Women Empowerment, KHSI, HCHS Hospital Management, and The Hans Foundation. A detailed policy will be in place to assure this process is in place.

Rights of People Served

Each person served in the community homes will be fully entitled to the following rights, except where those rights are limited by guardians or official substitute decision-makers. The Bill of Rights will be reviewed prior to moving into the home and annually thereafter.

Each person served is guaranteed the following rights:

• the right to treatment in the least restrictive setting available

• the right to full participation in the development of treatment/habilitation plans

• the right to handle personal affairs including: marrying, obtaining a divorce, writing a Will, the control of personal money and possessions, holding public office and appearing as a witness or defendant before a court of law (unless declared incompetent by a court of law)

• the right to be assisted in the assertion of civil rights, see a lawyer or advocate at any time, and be represented

• the right to receive and send unopened letters

• the right to have ready access to telephones

• the right to the freedom of thought, conscience and religion

• the right to establish political affiliations of choice, and to vote in public elections

• the right to unrestricted private communication the right to make complaints and to have unresolved concerns heard and resolved promptly

• the right to not be subjected to any harsh or unusual treatment

• the right to not engage in labor that is forced or productive labor for which there is not legal compensation

• the right to be free of the forced wearing of distinguishing marks, clothing, uniforms, or labeling that subjects a person to prejudicial treatment

• the right to not be discriminated against in the areas of treatment, employment, finance or housing because of race, creed, skin color, caste national origin, sex, age, mental or physical disability or sexual preference

A grievance procedure (ANNEX) is outlined for use when a person using services or their family member/guardian believes that she is being denied the rights outlined and available to her, is not receiving adequate services, or is being treated unfairly. This grievance procedure is to be reviewed prior to moving in to the program and yearly thereafter.

Upon request, an individual shall have a staff-advocate appointed whose sole responsibility is to assist the individual in the use of the grievance procedure. The individual shall receive a written response verifying the results of the inquiry for all grievances.

Family Relationships

When appropriate and possible, community home staff will make every effort to establish or re-establish positive relationships, with an eye to family reunification. If the person served is receptive, families will be invited and welcomed to annual planning meetings, household celebration, parties, and gatherings. Transportation can be provided for these. For some women served, relationships with extended family is another possibility, and efforts will be extended in this area as well. Individualized goals towards the strengthening of each person’s family ties will be included in the annual plan for each person, and will be guided by the wishes of each person served, the history of the relationship with family, and the safety and well-being of the individual woman.

Household Routines and Housekeeping

Program staff and the women living in each home will share all responsibilities and aspects of the household, including cooking, cleaning, shopping and marketing, laundry, care of the home, budgeting for common expenses, and maintenance of the home, assuring a dignified, safe, and healthy practices in each area. Each of these areas will be considered potential goal areas for increasing independence and autonomy, with the staff taking an increasingly less prominent role as the women gain independence. Program staff will take especial care to assure that positive and supportive relationships are forged with all neighbours, and will instruct and support the women living in the home to engage in positive and helping roles as neighbours. Each woman will be supported to individualize the home, add personal touches to their individual areas, and collaborate with housemates on care and décor of common areas. Regular engagement in community activities and individual engagement by the women in valued roles in the community is encourages, and staff will be expected to accompany, teach, support, and engage in such activities with the people served. The home will be kept in excellent repair, including regular internal and external maintenance, with high quality fixtures and fittings replaced and repaired as required due to wear and tear. The décor of the home will reflect the high value of the women living there, and any signs that this is a ‘program’ rather than a home will be minimized in every way.

Adequate supplies will be kept within the home to prepare and serve excellent, wholesome, high quality food tailored to the needs, requirements, and preferences of the women living in the home. Staff are expected to share meals family style with the women, modelling mealtime behaviour, encouraging conversation and a relaxed environment.

SECTION 13 Household Budget

As a part of the developmental curriculum, each woman will be supported to manage her personal funds as appropriate, and she will be given the opportunity to do so per her individualized plan. Each person served will be supported to gain access to any pension or monthly allotment of finances or aide she is due and access all government support programs. A normative portion of these funds will be contributed to the household budget, and the remainder will be available for her monthly recreational and activity funds via a service agreement. All personal funds will be carefully safeguarded and accounted for by program staff, and will be used as per the choice of the individual person. Guidance and support may be provided by program staff as noted in the individual support plan to increase money management skills.

Household budgeting with pooled funds will be available to the residents as appropriate to serve as an opportunity for developmental learning in the area of budgeting and household finance. Staff will assure these are funds are fully protected, accounted for, and documented properly.

Decision-Making and Autonomy

Each person served will be allowed the maximum amount of decision-making as appropriate to her age, legal status, and developmental understanding. Efforts to increase each person’s role in decision-making in everyday choices and larger life choices will be on-going. When there is a substitute decision-maker appointed under the law, that guardian will be invited to participate fully in planning and program design, and will be encouraged to maximize developmental opportunities to permit the individual person served to make choices as is appropriate and reasonable, and always to keep the well-being of the individual at the center of the decision-making process.

Continuum of Support

In order to safeguard precious resources, as well as provide for a potential trajectory of forward life outcomes, person-centered planning will include a continuous effort to increase independence, decrease reliance on formal, paid support, and increase natural supports. Opportunities to encourage movement to more independent settings will be considered, as well as decreasing the amount of paid staff support within the homes. Conversion to a supported living or family living model will always to be considered, resulting in less costs, or in room made for more women to leave the shelter home. For some women, this may be ‘home for life’, for others, this may lead to other preferred living options. In either situation, this program will strive to support growth change, and transformation for each person, whatever their situation and desires for the future.

Medical Support

One of the most important, and perhaps demanding responsibilities faced by the community home is the coordination of medical treatment to ensure the best medical care is available to people served.

Because many people with developmental disability are not able to communicate by conventional means, it is important that employees know the individual’s personality and how they usually express themselves. Unusual behaviour may be the only way that person can communicate to the community support staff that they are not feeling well.

Consistent observation and communication between employees will help ensure the health and well- being of each person served.

In an effort to provide on going and routine medical care to individuals, the program is required to provide pre-admission physical examinations, annual physical examinations, as well as annual dental, vision, and audiological evaluations. The latter three evaluations may occur more or less frequently as recommended by the attending physician. If Psychotropic medications are prescribed, medication reviews with an experienced physician or psychiatrist is required every three months or as recommended. Under no circumstances can the medication reviews exceed six months for psychotropic medications.

Immediate Action Procedures

In the event of any emergency or potentially dangerous situations,

1. Staff will take immediate action to preserve the safety and well-being of the individual

2. Staff will notify the appropriate authorities (fire, police, ambulance, emergency) if necessary

3. Staff will notify and inform management of the home using the management support system

4. All adverse events and incidents will be reported immediately to management via the 24 hour management support system, once immediate action is taken to assure the well-being of each person. Within 24 hours, notifications via an Adverse Event Report will be made to all appropriate parties including Guardian, The Department of Women Empowerment and Child Development, KHSI, HCHS, and THF. A detailed policy will be in place to assure this process is in place.

Adverse events are defined as: (1) illness or injury of a person served (2) hospitalization, (3)allegation of verbal, physical or psychological abuse (4) if a person served is missing or without supervision (if such supervision is required by assessment) (5) involvement of police, fire, or ambulance services, facility malfunction in major system (flood, fire), and (6) other adverse events as identified, notifications will be made to all appropriate parties including guardian, Department of Women Empowerment, KHSI, HCHS management, and The Hans Foundation. A detailed policy will be in place to assure this process is in place.

5. Public or private statements to the media may only be made by designated senior leaders with prior permission from Government of Uttarakhand, The Department of Women Empowerment and Child Development.

6. All staff will receive pre-service training in first aid procedures and managing medical emergencies.

7. Fire Safety Guidelines:

Evacuation Plan

A written fire evacuation plan will be developed and maintained for all service settings, indicating the frequency of fire drills, the planned evacuation routes, designated meeting place, and emergency shelter locations.

Equipment

Smoke detectors and fire extinguishers are required for each home, using recommended standards for the number of each. Fire extinguishers will be inspected annually by a certified professional, and the batteries will be changes on the smoke detectors twice yearly.

Training

Employees are required to participate in and role model fire safety practices for fire prevention and evacuation. Both employees and people living in the home will participate in fire safety training upon hire/moving in, and annually thereafter. Education will consist of general fire safety, fire drill responsibilities, smoking safety, smoke detectors and fire alarms, emergency services notification, fire safety pan, and documentation requirements.

Fire Drills

Fire drills will occur unannounced on a monthly basis, and at least one fire drill will occur during sleeping hours. All fire drills will be documented and reviewed by the Program Supervisor. Any difficulty with evacuating the home by the people living there will be addressed promptly through teaching plans and adaptations.

Fire Department

Program staff will establish and maintain a collaborative relationship with the local fire department.

Annexures

Policies and SOPs to be included in Annex (developed by Herbertpur Christian Hospital Services)

Position descriptions, Community Living Initial Screening Instrument, Personal Profile Process

Grievance Procedure, Adverse Event Reporting, Adult Protection Policy and Sexual Harrassment Policy