Bridging the Gap: Towards Inclusion in Education

Bridging the Gap Towards Inclusion in Education

By Krisstina Rao and Mary Ellen Matsui

Copyright @Atma 2017 Design Satvika Khera Photos Atma volunteers and associates Editors Franzina Coutinho, Radhika Misquitta, Rohit Menezes, Sonali Saini, Sushama Nagarkar This report is licensed under the Attribution- NonCommercial-ShareAlike 4.0 International License.

For concerns or queries, write to us at media@atma.org.in

Atma is registered under the Bombay Public Trust Act No. E-246141950 Guru Vidya, Office No: 501-505, Hill Road, Bandra (West), Mumbai-400050

Acknowledgements This report has been made possible, thanks to the number of organisations and their people who have extended support towards enhancing disability education in the city and as a sector in the country.

Firstly, for supporting Atma’s work in the sector and sharing their experience, we would like to thank the partners that have been central to our understanding of the challenges in disability education.

Aatman Academy Anandi Special School C Sharp School Chehak Trust (Sahyog) CHILD Reach Drishti Online Forum For Autism Gateway School of Mumbai Gharkul Jai Vakeel Foundation Little Hearts Maharashtra Dyslexia Association Mann Mimaansa Mona Remedial Educational Centre Muskan Foundation

Reach School Sai Connections Sai Sweekar Child Development Centre Sarthak Educational Trust Sankalp Charitable Trust Shishu Kalyan Kendra Sol’s ARC Sunshine School Suryoday Trust Umang Ummeed Child Development Center Urmi Foundation Vardayini Apang Seva Sanstha Yash Charitable Trust Youth 4 Jobs

For their thought-partnering and constant feedback, heartfelt thanks to our advisors and editors: Dr. Franzina Coutinho (Inspirium Holistic Care, PD Hinduja Hospital), Radhika Misquitta (Gateway School of Mumbai), Shamin Mehrotra (Ummeed), Sonali Saini (Sol’s ARC), Sushama Nagarkar (Yash Charitable Trust, Anjali Morris Foundation), Rohit Menezes (Bridgespan Group), Tapan Das (Youth 4 Jobs) and Vibha Krishnamurthy (Ummeed).

Finally and importantly, this report is the culmination of a splendid team effort. A big thank you to the Atma team of staff and volunteers for the unrelenting support.

From the Executive Director's Desk Dear Reader: Atma has been on the journey of working in the disability education space over the last five years. We have learnt a lot in this process but we are still distressed by the lack of attention in the mainstream education conversation about the relevance of special education. Children with disabilities are not a niche, but represent a significant student body; their education is an urgent and important part of the dialogue on quality education in India. This report is an attempt towards highlighting the importance of their education, to the wider community of practitioners and investors of education in India.

Atma began this journey of working on education for children with disabilities through our earlier partners, Sol’s ARC, Muskan, Mimaansa and Umang. With them, we learnt about the importance and the neglected nature of education of children with disabilities.

We saw the high potential of organisations working in the disability education space to scale their solutions and change the lives of their students. Since then, Atma has built a disability-focused Accelerator cohort and Gati, a consortium on disability education.

There are amazing practitioners and dedicated leaders in the disability education space, but sadly there is too little funding and support for their work. The stigma of disabilities, and a dearth of opportunities to prove the capability of students with disabilities sadly spills over into funding decisions- and students with disabilities are deemed a poor investment.

I have had the pleasure of meeting some of these intrepid students through Atma’s work and I can guarantee to you, that they are worth every investment. In the face of so many challenges, they emerge exceedingly capable of navigating modern life and attaining great things. One such student is Rohit, a 17-year old student with Autism Spectrum Disorder, in Pune. His parents have struggled to find a vocational program that would enrol him in Pune, and be able to support his capabilities. Rohit now travels eight hours every day on a bus to Mumbai and back, just to attend a catering course.

Rohit’s situation is indicative of the key challenges in India’s effort to educate all children. Like him, children with disabilities face a number of barriers that prevent them from accessing a quality education.

I want to take a moment to thank all of our partners and all of the members of Gati for adding to our learning, for opening their organisations to us, and making this report possible. Another big thank you and congratulations to my team who worked very hard in putting this report together, and thanks to all who helped us on the journey to writing this report.

I hope this report reflects to our readers, our excitement to be presenting this work, and the potential of these students to the world.

Mary Ellen Matsui Executive Director, Atma

CONTENTS

06 09

EXECUTIVE SUMMARY INTRODUCTION Bharati's story

10

SITUATION

12

SCENARIO TODAY

23

RECOMMENDATION

27 28

CONCLUSION

Problems of access, quality

Early Childhood 12 Primary 15 Secondary and Higher 18 Non-formal and Lifelong learning 20 Complication 22

Improving Access 23 Capacity training of teachers 24 Strategic support towards access and quality 25

ADDITIONAL References Appendix About Atma

List of Abbreviations CWD

Children With Disabilities

PWD

Persons With Disabilities

RTE

Right To Education

RPWD SSA

Rights of Persons with Disabilities (Act) Sarva Shiksha Abhiyan

MHRD

Ministry of Human Resource Development

MSJE

Ministry of Social Justice and Empowerment

CBR

Community-Based Rehabilitation

NGO

Non-Governmental Organisation

WHO

World Health Organisation

UNESCO GDP SE B.Ed. Dip.

United Nations Educational, Scientific and Cultural Organisation Gross Domestic Product Special Education Bachelor's in Education DiplomaÂ

LD

Learning Disability

MR

Mental Retardation

NIOS

National Institute of Open Schooling

CSR

Corporate Social Responsibility

DISE

District Information System for Enrollment

GMR

Global Monitoring Report

6

EXECUTIVE SUMMARY This report aims to present for philanthropists, challenges in disability education, given the recent push towards inclusive education as adopted through state practice. In doing so, Atma explores operations across 21 organisations operating as special schools, vocational centres, therapy or rehabilitation centres across the city- to survey why inclusion is still ideological and aspirational across these setups.

Inclusion although now codified in law through Right to Education, finds little use in supporting children with disabilities.

Even though students might gain access to mainstream classrooms (as reported in an increased enrollment rate for CWD), they are not taught the way they can learn. As a result, segregated setups remain the Hobson’s choice for parents looking for appropriate support for their children.

Even with a more popular dialogue on access to quality education for all children, we find several children marginalised. Many of them continue to be excluded due to their disabilities (as reported in findings of students remaining out of school). According to global statistics, 15% of the world’s population has a disability; this accounts for more than half a billion children worldwide and about 70 million children in India. With state mechanisms still struggling to accurately identify these disabilities, how do we ensure access to quality educational resources? The discourse on disability education is still largely removed from mainstream education. In the Atma sample of organisations surveyed, we find skills required by special educators to support children with disabilities to be very different from those required by mainstream educators. In spite of a proven skill requirement, few schools under the ambit of the SSA mandate recruitment of a special educator, or train its teachers to work effectively with CWD. Parents then are forced to settle for affordable, yet low-quality educational institutions.

The report presents a dual-focus for solutions intended to mitigate challenges in this space.

Firstly, solutions should focus on helping CWD gain access.

Across the Atma sample of organisations, only 60% of mature organisations (operating for more than 10 years) served more

than 50 beneficiaries. This lack of potential for scaling leaves students with disabilities excluded from education altogether.

The situation is exacerbated for children from low-income families whose lack of access to nutrition, health care and sanitation creates lifelong barriers to their education, employment, and public services, thus keeping them in poverty.

Research by Plan International highlights disabilities being a major deterrent for students to access school facilities. Across their sample of 1.4 million sponsored children in 30 countries, they found children with disabilities to be 10 times more likely to be out of school.

Secondly, resources towards educational access need to be monitored for quality. Teachers as principal implementers of inclusive practice are at the centre of this recommendation. A survey conducted by 560 government school teachers in Ahmedabad showed an alarming need for investment in teacher training. Seventy percent of teachers surveyed had neither received training in special education nor had any prior experience in supporting CWD. Overall, one-off teacher training programmes are found to be less useful than overall professional development that equips teachers with appropriate support to help them overcome real challenges.

Thus, support for a low-cost inclusive model of education can start with investment in quality solutions that give students with disabilities access to education. The next consideration to make is the potential of these solutions to scale. Promoting a sectorwide buy-in towards a solution would involve community awareness and sensitisation. Moving towards an inclusive school not only involves curriculum revision towards inclusive pedagogy and material but also equipping teachers to implement this in the classroom. Evidenced-practice of classroom strategies and behaviour management should find its way to mainstream classrooms that also serve low-income students. Finally, a coordinated response across the triad of stakeholders: students, their parents, and support services (educators, clinicians) ensures that inclusion is adopted both as a process and as an outcome of equitable education.

7

METHODOLOGY In order to compile this report Atma initially drew on our experiences from the Accelerator and Gati. Using this experience to form our initial framework we then worked with did both a literature review and a survey of organisations from the Accelerator and Gati programme.

Totally we reviewed 22 papers, articles and essays on the topics of education in India with disabilities, and disability in India.

We then performed a survey across 21 of our parents and member organisations. The survey was designed by the Atma Gati and Impact teams. We asked a total of 26 organisations to participate in the survey, and 21 organisations eventually did participate.

The questions in the survey pertained mostly to their organisation profile, the services they offered, children they work with and the challenges their students face. Where we felt there were information holes, or we felt there needed to be further qualitative data we asked members and partners for additional quotes on certain topics.

Post writing report we had a wide range of stakeholders give feedback on the tone, as well as the content.

There is a plan and a purpose, a value to every life, no matter what its location, age, gender or disability.

Sharron Angle

9

INTRODUCTION Bharati is 12 years old now. Two years ago, her mother sent her to the community ‘special’ school, realising that the facilities at the government school in her neighbourhood did not suit her child’s needs. At her new school, Bharati is markedly happier and fits in with her peers. After years of being in a school where teachers and peers considered her as a liability and a lazy, slow learner who had not picked up the skills and learnings to behave her age, she is glad to find a space where services are accommodated to her pace and her needs.

Four years ago, Bharati was also diagnosed with Autism Spectrum Disorder which affects the triad of social interaction, communication and development. Depending on the severity, it affects learning and the development of cognitive and emotional skills to varying degrees.

Bharati’s new school had been set up nearly a decade ago by a special educator and is still one of the few in suburban Mumbai.

Today, it has a team of 4 special educators working with 35 students with different intellectual disabilities and developmental delays. The neighbourhood in which this school is located has nearly 300 identified cases of learning disabilities and developmental disorders (thanks to the school’s early intervention programme). The school, however, has neither the financial or manpower resources to provide for the unserved 250+ children with special needs. Scaling up her organisation would require strategic skill and resources that the leader does not have access to, as a special educator who is also a parent of a child with special needs.

This illustrates a common profile of a segregated school that Atma has worked with through its capacity-building programmes.

(1) Rehabilitation Council of India (2000) (2) Mukhopadhyay and Mani (2002)

The number of special schools has grown phenomenally since the early 1900s; as estimated by the Rehabilitation Council of India, they have more than doubled, touching 2500 in the year 1 2000 . Their highest concentration is found in urban areas, with 2 Mumbai having the highest number of schools .

Despite its recent popularity in education and mainstream media, inclusion is still far from achieved. More popular are segregated schools offering supportive service to children with disabilities in environments that are isolated from mainstream classrooms. Organisations working with students with disabilities are under-resourced in talent, strategy and funds.

For parents from low-income families, however, these underresourced (and more often- segregated) schools remain the only choice for their child’s education. The result: students with disabilities end up being excluded from the mainstream discourse on equitable, quality education.

The voluntary sector has historically been at the forefront of providing CWD with both educational and vocational services and even in present times, continue to be central to these service provisions. In this report, Atma reaches out to 21 organisations aggregating services for ~6500 CWD and PWD across Mumbai. These include special schools, vocational centres, and therapy centres. A majority of these organisations cater to CWD from low-income backgrounds, where we find inclusion practised only minimally.

SITUATION

11

Disability in India, as in the world over, is regarded as the problem of a few. In 2010, the WHO reported more than 15% of the world’s population as having a disability- that’s more than a 3 billion people across the world. In the same year, India’s census reported a measly 2.21% of the total population having a 4 disability. While this gross underreporting has not gone noticed, the repercussions on the quality of life for children with disabilities specifically, have not been addressed.

In 2005-06, budgetary allocation towards disability was only 0.00009% of India’s GDP. This includes applications for schemes across key ministries such as health, education, labour, rural development, youth affairs and sports .

10

Quality education, which is only recently come to being regulated for CWD, is still unreachable for most of these children. While the Education for All initiative has claimed to bring 98% of all children enrolled in schools, they do not 5 manage to stay there. UNESCO’s Global Monitoring Report (GMR), based on surveys from four countries notes that children at higher risk of disability are far more likely to be 6 denied a chance to go to school. Further, school completion rates are lower among CWD as compared to other marginalised 7 groups. Based on a dataset of 1.4 million sponsored children from 30 different countries, CWD were found to be 10 times more likely to not attend school than children without 8 disabilities.

This problem is exacerbated for children from low-income families. Children from low-income backgrounds are at a higher risk of acquiring a disability because of lack of access to good nutrition, health care, sanitation, as well as safe living and working conditions. The effect is lifelong with barriers to the education, employment, and public services, keeping them in poverty. Dr. Amartya Sen highlights the poverty-disability link in his keynote address at a World Bank conference saying," PWD spend far more on expenses associated with their disability, given a purchasing power that equals their non-disabled counterparts” As with mainstream education, government regulation has been focusing on resource allocation and physical infrastructure solutions rather than the provision of quality.

A 2007 World Bank report marks that while India has one of the most progressive disability policy frameworks in the developing world, with acts such as the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 11 1995, implementation is still poor. Domestic research on perspectives towards disability education highlights the tone of policy interventions in this space.

Where young PWD valued education towards enhancing their own social skills, opportunities, and cultural capital, their significant others only accorded value to education that directly 12 leads to employment. Need for support in disability education can be summarised then, as: access towards resources quality of accessible resources Overall, the situation in the sector is in dire need of support.

Investment in special education (or segregated schooling) has been competing with inclusive education. In spite of progressive policy changes and systemic reforms in the last two decades, however, India has leaps to make in ensuring accessible education for CWD. Tackling the mindset shift that inclusion entails requires more than just administrative changes towards physical accessibility of school infrastructure. Segregated schools receive immense support especially from low-income families, and as the report, further highlights, has, even more, a potential for scale.

Lack of information about the disability sector in India, along with severe underreporting on its disability population estimates has contributed to poor government support. The SSA is reported to have spent £2.3 million of an overall budget of £78 9 million in supporting CWD services.

(3) WHO (2010) (4) Census (2011) (5) Firstpost (2016)

(6) UNESCO (2014) (7) UNESCO (2010) (8) Plan International (2013)

(9) Singal (2016) (11) World Bank (2007) (12) Singal (2011)

SCENARIO TODAY EARLY CHILDHOOD

CBR guideline: This term refers to education from birth until the start of formal primary education. It focuses on child survival, development and learning, including health, nutrition and hygiene. This period is often further divided into the following age ranges: birth to three years, and three years to six, seven or eight years when formal schooling starts.

13

DISE enrolment for CWD (%) as a proportion of total enrolment (2015- 16)

ACCESS

100%

Intervention for early detection and management of a child’s disability has relied on outreach through medical surveillance. Developmental paediatricians and other early medical practitioners act as primary care professionals in the 15 first five years of a child’s life, along with parents.

16

5%

0%

1.16 in Elementary

Planning a quality education for CWD starts well before their first day of school. For vulnerable children, access to critical resources during early childhood can offer the firm foundation they need for subsequent health outcomes, socialisation, school performance, future earnings and overcoming social disadvantages. Lack of early detection and intervention can make these children more vulnerable to exacerbating environmental stimuli like poverty, stigma and discrimination, poor caregiver interaction, abuse and neglect, and limited access to programmes 13 and services.

Developmental surveillance and screening during preventive health care visits in the early years can allow the paediatrician to offer guidance in supporting the child’s development during early childhood. However, the stigma attached to disabilities 17 keep families away from clinicians. A resounding observation among parents of CWD who have already been enrolled in formal schooling shows lack of awareness among parents of the nature of their child’s disability prior to enrolment in the school.

In the Atma sample, only 43% leaders agreed that parents come with prior knowledge of their child’s disability, prior to 18 enrolment (see below). This reduces to 40% for low-income organisations surveyed.

These factors can lead to increased risk of long-term disability, and/or development of additional disabilities that significantly affect their survival and growth.

Children with disabilities are shown to be vulnerable to additional problems that further delay development. Besides having other disabilities co-occur with their diagnosed disabilities, they are found to be “doubly-vulnerable” in being increasingly exposed to stressors related to poverty and other environmental risk factors.

14

(13) World Bank (2015) (14) Guralnick, M.J. (1998) (15) Pediatrics (2001)

The lack of clarity around assessing intellectual disabilities creates further hurdles in access. Sonali Saini, the founder of Sol’s ARC, explains, “The health department is not coordinating with the education department. The issues concerning giving guidelines for government hospitals (towards assessment for disability certificate) exist because of this lack of coordination.”

(16) An important technique used by paediatricians. The components of developmental surveillance include eliciting and attending to parental concerns, obtaining a relevant developmental history, making accurate and informative observations of children, and sharing opinions and concerns with other relevant professionals.

(17) UNICEF (2013) (18) Atma analysis

14

The disability certificate, acting as ‘proof of disability’ and codified through the RPWD Act in 1995 remains the official yardstick to determine the type and extent of a person’s disability and the concessions they are entitled to. However, two decades since implementation, there still exist immense hurdles in the process of assessing a disability and acquiring this certificate, limiting the certificate’s ability to empower its beneficiaries. Sonali adds, “In blindness and deafness, you can establish 40% disability because there is a decibel level to establish deafness. With a learning disability, you can only know the kind of LD: dyslexia or dyscalculia. But (no test) will tell you a percentage of disability.

So, unfortunately, it’s vaguely defined and up to the assessor to say 'okay, this (disability) is 40 or 50%, and can hence avail of benefits'.”

Across the Atma sample, the average time to acquire a disability certificate was reported to be more than a month, more so for severe disabilities. As a result, only 52% of organisations surveyed make it mandatory for students to obtain a disability 19 certificate, prior to enrollment in school.

QUALITY

However, concerns around the quality of this intervention with regards to therapist training, discipline in therapy programme and partnership sought from parents, remain to be addressed. On average, organisations aged 10 years or less, went through an average of seven therapists for each year of operation (see below). This is due to high market demand for therapists, leading to the contractual nature of their employment. Although costing the organisation anywhere between Rs. 300-700 for 45 minutes of therapy, majority of the students ended up receiving 1-2 sessions per week. While the frequency of the therapy administered is reasonable, quality clinical intervention also considers other characteristics of the therapy environment to be crucial.

Dr. Franzina Coutinho, Consultant OT at PD Hinduja Hospital outlines, “Characteristics of a good treatment environment include decreased visual stimulus, adherence to safety norms the prevent hazards, ability to put away large equipment easily, and constant supervision during therapeutic sessions. While making sure that this is done in a safe and child-friendly environment, good therapy should also be supported by a sound home programme (administered by parents) to help achieve better outcomes for the child.”

Number of therapists employed since inception

For children with diagnosed developmental disabilities, regular occupational and speech therapy sessions were found to be a popular form of therapeutic intervention (accounting for 33 of the 20 85 therapists in organisations surveyed) (see Appendix 1).

Years of operation (19) Atma analysis (20) Atma analysis

SCENARIO TODAY PRIMARY

CBRÂ guideline: This is the first stage of schooling, intended to be free and compulsory for all children. It is the focus of the Education for All initiative proposed by UNESCO, and the target of most educational funding. Children with disabilities, like other children, need to be included in local primary schools so that they learn and play alongside their peers.

16

100%

DISE enrolment for CWD (%) as a proportion of total enrolment (2015- 16)

5%

0%

1.18 in Primary

Beginning at age 6, most children with disabilities enrolling in school formats that include mainstream, inclusive or segregated schools. Children who lacked early intervention support now find themselves at the crucial juncture of having to simultaneously address their developmental, as well as academic needs. For those included in education from early childhood too, information about specific interventions and classroom best practice for primary students with disabilities is slow to come. Under SSA, over 32 lakh CWD are reported to 21 have been identified until March 2013. Including students with disabilities in mainstream education received a major boost through the MHRD’s SSA programme. But its claims on increasing access to quality education for CWD lack support, with disabilities still being a major cause of students remaining 22 out-of-school. Inclusion is still ideological in the Indian context.

ACCESS Parental role in identifying and managing their child’s disability remains more crucial than ever, yet few parents find support in prevalent information channels to diagnose and manage their 23 child’s disability. Across the Atma sample, parents were found to be omnipresent during their child’s assessment and intervention support in school. Leaders of these schools, however, did not regard this as positive support.

(21) Press Information Bureau, GOI (2013) (22) Survey by Das et al. (2013) as cited in Singal (2016) (23) Mangharam et al. (2017)

Of the leaders across schools surveyed, only 6 of 14 agreed that parents of their students devoted sufficient time to their child’s development. This observation is also found to be income24 inelastic. There evidently exists a gap in what is deemed as quality support by parents, and leaders of the schools enrolling their children.

There are further institutional limitations to what a student with disabilities can achieve. Limited data and lack of evidence supporting learning achievements and outcomes for students with disabilities fail to draw support for CWD education.

Examinations and tests do not make adequately useful accommodations for learners with disabilities, putting them at a disadvantage. This fuels already low expectations for these students and reinforces the idea that students with disabilities do not belong in a culture of achievement.

The RTE mandates inclusion of all students, yet most mainstream schools are found to exclude children with disabilities on account of: Student’s inability integrate and therefore disrupt learning of other non-disabled students Inability of the school to provide adequate support Complaints from other parents – especially influential in 25 private schools Manisha, Executive Director of Chehak Trust (Sahyog), an organisation that runs a community-rehabilitation center in suburban Mumbai reports, “In our community, we looked at three schools- two BMC and one private (government-aided) school where SSA is being implemented. If we try to mainstream our children to these schools, they are not enrolled. The schools say that it is not possible for them to enrol these children because the degree of disability is severe and it is very difficult for the teachers to handle them.”

Difficulty in integrating CWD with mainstream schools could also be due to an administrative overlap. In India, while the Dept. of Education based in the MHRD takes up the education of all children, the MSJE is tasked with the education of CWD, especially those who are educated in special schools. CWD who get admitted into the mainstream school are supported by the MHRD, through schemes such as the revised Inclusive Education for Disabled Children. 26 (24) Atma analysis (25) Atma analysis (26) Singal (2008)

17

Additionally, due to RTE, no student can be held back. While this is international best practice, it used to act as a signal to parents that a student required greater intervention. As a result, many students who have ‘invisible’ disability like slow learners or learning disabilities are passed over until they fail in IXth Std., not being able to cope with the accumulated 27 learning lags.

Farida Asrani, Principal at CHILD Reach, finds evidence in her school’s enrolment. CHILD Reach supports students with learning difficulties with appropriate classroom interventions.

“At the time when RTE had just come in, and schools had to follow the government policy of keeping on struggling learners. Our school did not receive new enrolment. But years later, when the same child reached std. 9 and could not cope, they joined us. Now I feel that parents are even more. They feel there’s no point in letting the child continue till 8th std. (in the mainstream school) because they’re just sitting in the classroom but not learning anything ”.

While students who stay in mainstream school until IXth can 'access' their school, they do not have access to the education being provided there. They are not being taught the way they can learn, and therefore education remains inaccessible.

QUALITY Inclusion requires mainstream schools to be equipped with resource centres for accessible and affordable teachinglearning materials that facilitate learning for CWD. In reality, few schools offer these resources and are further limited by lack of awareness of their utility.

(27) TOI (2014) (28) Planning Commission (2002) (29) Atma analysis

Shadow teaching (educational assistant providing individualised guidance to students with learning differences in the classroom) has been useful in helping include students with moderate and severe disabilities. The use of this measure in contemporary classrooms today emerged as a tactic in 28 mainstream schools. In India, the shadow teacher is mandated to be a trained special educator and the lack of available special education professionals has been used to 29 excuse enrolment in mainstream schools.

The trend of high staff turnover in segregated setups 30 continues. The consequence of high staff turnover: the shortlived rapport between the special educator and the student 31 hampers student's learning in the long-term.

46% 21%

33%

* Certificates overlap with Dip/ B.Ed. at times.

Qualifications of special educators from the Atma sample

Among the 133 special educators comprised in the Atma sample of organisations, 63 had a B.Ed in special education 32 and 44 had a Diploma in SE or a related field. A minority 29 received training to work with specific disabilities such as certifications in LD, MR, multiple disabilities. While the quality of these trainings have been popularly questioned, schools have begun relying on in-service training to equip their teachers with skills to work with their students.

(30) Atma analysis (31) Atma analysis (32) Atma analysis

SCENARIO TODAY SECONDARY AND HIGHER

CBRÂ guideline: This is formal education beyond the 'compulsory' level. For young people with disabilities, further education can be a gateway to a productive and fulfilled life, yet they are often excluded.

19

100%

DISE enrolment for CWD (%) as a proportion of total enrolment (2015- 16)

5%

0%

0.56 in Secondary

The more disadvantaged a person is, the more they need access to quality educational resources beyond the basic level to be included in society. This is because they need to demonstrate more skill, knowledge and qualifications to attain the same level 33 of survival, employment and inclusion. Institutional barriers to access in quality education at the secondary level are evidently many.

Of the CWD that enrol in primary school, more drop out rather than continue in secondary school.

DISE enrolment data shows that CWD enrolment (as a % of total 34 enrolment) drops in half between primary and secondary school.

ACCESS While the General Enrolment Rates (GER) for both primary and secondary school saw a relative improvement since 2007, the country still sees 47 million youth dropping out of 35 secondary school in 2016. Disability remains a leading cause for this trend in drop-outs. Of persons with disabilities who are educated, we see that only 59% complete Class 10, as 36 compared to 67% of the general population.

Started in 1979, the National Institute of Open Schooling (NIOS) has provided immense relief to students with disabilities by providing necessary modifications and accommodations to mainstream curriculum through its Open Basic Education (OBE) course. Through this, the MHRD (again, not MSJE) has made education immensely accessible by compressing relevant curricula into 3 levels of formal 37 education. For students whose disabilities are identified at a later stage, the situation is tricky. Shifting from a mainstream education board to NIOS, ensuring standardized levels of achievement across parallel boards at each level remains a challenge.

QUALITY Among segregated schools too, the poor performance of secondary grades remains a matter of concern. Leaders within the Atma sample reported high confidence in their staff to address their students’ academic needs. Yet, within the surveyed schools that provided training for primary levels of the NIOS board (levels A,B), 56% reported having any students in training for the secondary levels (level C). Many of these organisations have been around for more than 10 years.

We find more evidence for the stark challenges that PWD face even after gaining access to education. Research by Singal highlights the story of a young woman, Anandi, who was interviewed regarding her training for employment. “Madam, here there is nothing. There is nothing worth learning. There is nobody who can teach anything. I asked them to teach me how to do my signature but these people [her brothers] say, 38 ‘how can you people learn?’...”

(33) WHO (2010) (34) DISE (2015-16) (35) NIOS (2012)

(36) Hindustan Times (2017) (37) NIOS (2012) (38) Singal et al. (2011)

SCENARIO TODAY NON-FORMAL AND LIFELONG LEARNING CBR guideline: For some learners, non-formal education can be more flexible and effective than the formal education system, which may be too rigid and seen as failing to provide quality education for all. But non-formal education should be complementary, not seen as a substitute for an inclusive formal system. Sometimes non-formal education is inappropriately offered as a 'second best' option for children with disabilities, denying them their legal right to formal education. Life-long learning refers to the knowledge and skills needed for employment, adult literacy, and all types of learning that promotes personal development and participation in society.

21

Non-formal and lifelong learning, though meant to serve separate functions for a student with disabilities appear to be an extension of services provided by segregated setups. In this space, there exists a sharp divide between vocational training for jobreadiness and skill training connected to placement. In spite of the value given to employment-directed education among significant others of PWD, we find a large proportion of surveyed organisations with vocational programs that do not always 39 translate into mainstream employment opportunities.

ACCESS With poor prospects of integration into mainstream employment and the hampered ability to align with career paths in mainstream education, youth with disabilities resort to sheltered workshops attached to schools. Even though sheltered workshops represent the high dependence of its ‘employees’ on the school and its resources, very often they are the only safe and sensitised environment for adults with disabilities to fall back on.

18+

43% of surveyed schools continue to provide for youth above 18 within their sheltered workshops.

Sensitisation in the sector for training for skills or employment is still a hurdle to access for resources. Research from rural and semi-urban parts of India report that family networks, immediate and extended, were the strongest factor which PWD, irrespective 40 of the types of impairments, relied on to get paid employment.

Youth4jobs is an organisation that skills PWD across India, while also supporting their placement in mainstream employment sectors. Tapan Das, Co-founder and Vice President highlights the sensitisation gap among employers, among the other factors

(39) Singal (2016) (40) Singal (2016)

that are hurdles to the placement of PWD in the job market.

“There is still a dearth of supportive employers and work environments for PWD. The reason- employers don’t think (PWD) can be employed. There are no opportunities for PWD, so we need to in fact, create these opportunities. Although we try to follow a participative approach of doing this, by first exposing potential employers to sectors and industries that have bought into the idea of employing PWD and then helping them identify suitable job roles within their company, this is not enough. While you might convince the 10% of the management, but supervisors in charge would still regard this employment as 'token employment' for which the company is then expected to forsake their productivity.”

QUALITY With a number of skills and jobs being inaccessible for PWD due to the nature of their disabilities, lifelong learning as an outcome falls on the quality of training being provided. Within the Atma sample, we found poor guidelines to direct vocational training management. Most vocational setups operated in sheltered workshop formats that relied on festive sales to their close social circles for their skill training to be gainfully used. Stipends for those employed in this workshop were then an additional burden that schools took up, limiting the number of candidates above age 18 that they could employ.

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COMPLICATION Education for children with disabilities has been systematically codified through the adoption of the Education for All initiative.

We find that although the proponents for inclusion are many, there are few affordable and scalable models to support. Further, the vast proportion of students who are served by segregated setups are excluded in this perspective towards development in education.

It is well acknowledged that disabilities remain a crucial factor in keeping students out of school. India has a near-universal enrollment in primary education, students who join schools do 41 not manage to stay there. The utility of formal schooling has been popularly questioned for both- students with disabilities and their non-disabled counterparts. However, creating opportunity in formal schooling for the more vulnerable lot of students with disabilities from low-income backgrounds is imperative going forward. Schooling for children with disabilities might be normalised today with the changing socio-political climate in the 42 country, but classrooms for students with disabilities and those for students without disabilities still look very different. Parents too, have internalised this: in families where only one sibling has a disability, parents have different aspirations for the siblings.43 While the situation remains challenging for children with disabilities to access educational opportunities, it is further complicated by the following features of the disability education in the country, which is still largely defined by segregated setups: - Bureaucratic legislation prevents access to support: Legislation has come a long way in empowering students with disabilities, giving them better access to education and other supportive services. However, the stigma of disability that keeps students away from seeking support is still compounded by the laws that hurdle identification. Evidence from the Atma sample has shown that it can take anywhere from a few weeks to a few months to obtain a disability certificate, further delaying access to state-sponsored support like examination, travel and tax concessions. What is meant as a tool to empower PWD then, turns into a hassle.

(41) ASER 2016 (42) Singal (2016) (43) De et al. (2011)

- Parents as service providers: Little research highlights the extent of parental involvement, and how their contributions shape disability education in developing education systems like India. Many schools and outreach programs for CWD were found to be set up by parents of children with disabilities in their communities.44 Research finds this to be true among more affluent socioeconomic communities as well.45 - Focus on individual rather than scalable models: Few schools surveyed are found to shift instruction from individual students to a group of students in classrooms.

Individual education plans, that are meant to advise teachers on supportive services required by the student are found to be the ultimate resource for curriculum assessment, instruction and other classroom or environmental support. Mainstream education models, on the other hand, display a more methodical approach common to a classroom rather than a completely individualised plan for each student.

- As compared to mainstream education, disability education is largely defined by a young industry of practice. While the sector has witnessed the establishment of service agencies (special schools, therapy centres, vocational and employment cells), its impact is severely limited by resource shortages in the form of qualified teachers, low-cost teaching-learning materials, and societal and parental stigma.

- Dependence on primary sources of funding: Funding remains a key driver in ensuring quality input in the space.

Due to the lack of awareness about this sector and lack of strategy in fundraising, a minority of organisations listed secondary sources like CSR, Philanthropic sources or government grants as their income sources. In the Atma sample, 67% list secondary sources as funding sources, while significantly more: 95% report primary sources like service income, individual donors and fundraising events as a funding source.

(44) Atma analysis (45) Alur and Bach (2012)

RECOMMENDATION

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a. Funding needs to go into improving access Early identification of disabilities can improve overall outcomes of the child. Addressing developmental delays early on can mean 46 47 the difference between mild and moderate disability to severe. Unfortunately, these services are not readily available. In the Atma 48 sample, only 56% of organisations from cohort provide services towards early identification and diagnosis of disabilities. a.1 Wider Awareness and Community Awareness The stigma surrounding disability remains the primary barrier for access to resources. In disability education, we find a relative few mainstream practitioners engaging on specific learning needs for CWD. 85% of the Atma sample reported engagement with the community through awareness 49 drives, camps and other programmes. A majority of these only reach out to the cohort of parents in families whose children they school. The Mumbai Marathon remains a flagship community awareness drive in this regard, but the outcomes are unknown and must pave way from larger outreach exercises.

How to get this done: WHO recommends a framework for Community 50 Based Rehabilitation model. This model involves the community in enabling the child to be successful.

Where you can invest: Programmes that equip community outreach workers to identify disabilities in young children in their communities and enrol the children in early intervention programmes. NGO Chehak Trust initiated the Sahyog project in partnership with Ummeed Child Development Center. Through this programme a team of 15 Community Health Workers and 3 Supervisors is involved in monitoring development of children between 0 to 3 yrs. Using the internationally validated 'Guide for Monitoring Child Development' (GMCD) tool helped to identify delays and disabilities in this age group.

a.2. Move towards inclusive school is essential Given a pick between segregated and mainstream or inclusive setups for their child’s schooling, parents across different income strata pick segregated setups for their emotional support towards their children, and acute regard for their needs. Although the ideal scenario is still inclusion in the51mainstream, this transition should not ignore the adaptations a mainstream school has to undertake to make this a reality.

By building the demand and capacity of mainstream schools to be inclusive we will increase the number of options available for education to children with disabilities and their families.

(46) Gularnick (1998) (47) Mukhopadhyay and Mani (2002) (48) Atma analysis

How to get this done: Schools need philanthropic support to become inclusive environments. Schools that are inclusive should be able to provide for each student individually, rather than treating all their students to the same instruction collectively.

Where you can invest: Differentiated assessments and learning models like Sol’s ARC’s curriculum uses school capacity-building to help teachers provide a differentiated curriculum that is tailored to CWD and students with learning lags. Practical user-friendly assessment tools and adaptive curriculum make inclusion more approachable for teachers.

Occupational therapists (who are major service providers in special schools) should be allowed to contribute more prominently through teacher training in behaviour modification and sensory integration in mainstream inclusive schools. Inclusion marks a shift in culture, not only classroom.

Ummeed’s School Outreach Program helps various school stakeholders understand and accommodate for each other’s strengths, learning and social needs. Collectively, this helps schools revise their school culture to be more inclusive.

(49) Atma analysis (50) IDDC (2012) (51) Singal (2016)

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b. Funding needs to go into capacity-training of teachers Teachers are crucial in the movement towards inclusion because of their main role they play in promoting, participation and reducing underachievement, particularly with struggling learners. In fact, research has shown that teachers even when supporting inclusion as an ideology, find that they lack training in implementing inclusion.

52 “The focus needs to be on evidence-based practices and how to collect data in a systematic way. We (with Morris Foundation) were instrumental (...) in conducting some training for the SSA for the teachers. Now, that was the limit of training imparted to them. This was done at a very basic and ended there. We had suggested that they (the teachers) carry on training them but it never went anywhere. So there’s no follow-through with (the training) and you need to keep doing this on a regular basis, without which (inclusion) will never work.”- Sushama Nagarkar, Managing Trustee of Yash Charitable Trust

b1. Support more people to enter the field of special education Whether in mainstream or in segregated schools there is a dearth of special educators. In order to provide for all the students in either setting more people need to be entering the system, and choosing special education as a focus area.

How to get this done: For anyone looking to become a special educator, there are several options. Diploma and degree courses in special education are offered by several universities in Mumbai and private centres. Though several colleges offer these programmes the number of seats is limited and the interest, knowledge of this specific stream of teaching is relatively low.

Where to invest: In formal institutions to increase the number of seats available. In Mumbai, SNDT University offers a B.Ed degree in special education, with 25 seats available. Other universities offering special education include: SIES, Tata Institute of Social Sciences (TISS), Amity University and Mumbai University. In private institutions to increase interest in their offering. Many private special education institutions offer certificate or diploma courses in special education. These private institutions, however, struggle to maintain enrolments. NGOs or Private organisations offering training in special education include Dilkush and New Horizons. b2. Support special educators with training that is based in evidenced best practice Special education teaching practice is always evolving, and special educators especially those working in resource constrained environments need help to maintain their skills and practices. Additionally, teachers need to be better equipped to deliver basic literacy and numeracy skills, that will prepare children for employment thus allowing them to avoid poverty. Research evidence from Pakistan and India suggests that teachers do not seem prepared for such a task.”

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How to get this done: Teacher training with a strong component of in-service training should be adopted to ensure content which is being taught is being tailored to the specific teaching situation of each teacher. There is now an urgent need to involve teachers in constructive dialogue to support the development of training programmes that are truly beneficial in equipping them with the needed pedagogical skills. Each school differs in its facilities and available resources, therefore context to training and reinforcement in the classroom is essential. Additionally, due to the individualised nature of special education delivery students are not often held to external standards of evaluation. The lack of assessments results in the inability to hold CWD to an externally recognised standard, and therefore keep them in a separate and segregated category.

Where you can invest: There are several recognised private training providers. These include: Maharashtra Dyslexia Association (MDA) offers specialised certificate training on Dyslexia therapy, that is affiliated with the Multisensory Language Training Institute of New Mexico Gateway School’s School Outreach Program partners with local schools to provide deep support in their management and teaching staff on how to create a more inclusive environment.

(52) Singal (2016)

(53) Singal (2016)

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c. Strategic support towards access and quality In India, there is a political understanding of the need for access and inclusion of CWD. There are, however, many barriers (as discussed above) to being able to provide quality and access to students. We must make sure that we do not deprioritise some in favour of others. The mainstream education conversation in India reflected in findings of Singhal reiterate that ‘efforts to address 54 55 the ‘‘global learning crisis’’ must include children with disabilities at the levels both of assessment and interventions.”

In order to achieve this there needs to be a greater focus on: scalable solutions, and coordination between service providers.

c.1 More scalable solutions Direct service delivery to students with disabilities requires individualised attention to students. The result is high-intensity service provisions that are unable to scale. Small NGO or private operators face innumerable challenges, like: raising capital, staying cash flow positive, retaining staff, updating team skills, and maintaining an appropriate space.

Opening more small private clinics/schools are not going to be able to serve the needs of these children. 48 % of the surveyed organisations serve a limited number (50 or less) of beneficiaries. Of these (10 orgs), 40% 56 have been in operation for more than 10 years.

How to get this done: There needs to be a concerted effort by disability space and the wider education sector to develop new models. Philanthropic funds need to be supported by government partnerships for scale. This goes towards: Pilot development and implementation Clear goals and benchmarked outcomes Outcome assessment of Indian implementation of globally recognized practices Where you can invest: Unfortunately very few examples of scalable models exist in the disability education space, and there are few players who are interacting with the government interventions. Investment in model pilot and development will be essential to see the education of education for CWD advance.

Youth 4 Jobs is a skilling and employment-focused programme focused on individuals with physical disabilities. With operations across India, they have 57 trained over 11,000 youth and have a placement rate of 65%. They are now piloting the placement of young people with intellectual disabilities with some Atma Partners.

c.2 Coordinated response to challenges In the life of a child with disabilities there are many different stakeholders. Both those who have direct interactions like medical professionals, teachers, and parents, and those that make up the community around the child like: school administrators, neighbours, and policy makers. Because these stakeholders and service providers form such different functions in the child’s life, there needs to be a greater coordination between these players, and also there is the need for a common understanding for how to interact and provide services to the child.

(54) UNESCO 2014, as cited in Singal (2016) (55) Singal (2011)

Where you can invest: Atma’s consortium on disability education, Gati is an effort to bring together a variety of stakeholders who have a values and vision alignment to create a framework that will enable greater inclusion of CWD in education. Atma is seeking cooperation from schools and communities looking to make their environments more inclusive of all children.

(56) Atma analysis (57) Youth4jobs website

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CONCLUSION It is estimated that there are over 70 million children with disabilities in India today. These children by both domestic and international standards are required to receive an education. We are however still a long way off creating a scalable solution for educating students with disabilities. The promise of doing so through inclusive education is also not close to becoming a reality.

The purpose of this report is to highlight this as an essential component of improving education in India and inform funders about where they can focus attention.

This report situates the perspective of segregated or special schooling, in the larger dialogue of inclusive education in the country. While the move towards inclusion itself finds little valid criticism, the top-down policy implementation approach towards development in education has brought a number of challenges to attention. Towards mitigating this, we suggest broadening the scope of this inclusion movement by making segregated and special schools (that provide for a large number of students with disabilities today than mainstream schools do) part of the dialogue for change. In pursuing this, the report highlights capacity and funding gaps in disability education that deserve immediate attention from practitioners, policy-makers and potential investors. Addressing these challenges requires a coordinated effort from practitioners in the space so that change is carried out sustainably and is geared towards a better quality of life for children with disabilities. The challenge of providing education to CWD is both an issue of ensuring access as well as increasing the quality of what is on offer.

Atma is excited to be bringing together practitioners on the issues of education for CWD, to test and create Indian solutions for providing a more inclusive and higher quality education for CWD.

REFERENCES

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Alur, & Bach. (2012). The journey for inclusive education in the Indian subcontinent. Routledge.

Annual Status of Education Report (ASER) 2016(Publication). (2017, January 18). Retrieved http://img.asercentre.org/docs/Publications/ASER%20Reports/ASER%202016/aser_2016.pdf CBR Guidelines as a Tool for Community Based Inclusive Development(Publication). (2012). IDDC. Census of India. (2012). Disabled populations . Retrieved from http://censusindia.gov.in/Census_And_You/disabled_population.aspx Choudhari, A. (2014, July 23). RTE pushing up failure rate in class IX. Retrieved from https://timesofindia.indiatimes.com/city/nagpur/RTEpushing-up-failure-rate-in-class-IX/articleshow/38885503.cms Developmental Surveillance and Screening of Infants and Young Children [Abstract]. (2001, july 1). Pediatrics,108(1). doi:https://doi.org/10.1542/peds.108.1.192 GOI, Special Service and Features. (2013, October 25). Education to Physically Challenged Persons[Press release]. Retrieved from http://www.pib.nic.in/newsite/mbErel.aspx?relid=100251 Guralnick, M. J. (1998). Effectiveness of Early Intervention for Vulnerable Children: A Developmental Perspective. Early Intervention,8-50. doi:10.1002/9780470755778.ch1 Mangharam, A., Rathod, S., & Coutinho, F. (2017). Parent Narratives: Perspectives on receiving therapy for Autism Spectrum Disorder in the Indian context. In International Developmental Pediatrics Association Congress 2017. Mumbai, Maharashtra: Ummeed Child Development Centre. (To be published) Mukhopadhyay, & Mani. (2002). Education of children with special needs India education report. A profile of basic education ,96-108.

National Institute of Open Schooling: Precise Information. (n.d.). Retrieved from http://www.nios.ac.in/about-us/at-a-glance.aspx Plan International. (2013). Include us! A study of disability among Plan International’s sponsored children.

Planning Commision. (2002). A handbook for parents of children with disabilities.

Rehabilitation Council of India. (2000). Status of disability in India.

Sarbones A. (2015, June 15). Towards a Disability Inclusive Education. Oslo Summit on Education for Development.

India, Ministry of Human Resource Development, Department of School Education and Literacy. (2016). School Education in India, U-DISE 2015-16(p. 44). New Delhi, Delhi: NUEPA. Singal, N. (2008). Working towards inclusion: Reflections from the classroom. Teaching and Teacher Education,24(6), 1516-1529. doi:10.1016/j.tate.2008.01.008 Singal, N., Jeffery, R., Jain, A., & Sood, N. (2011). The enabling role of education in the lives of young people with disabilities in India: achieved and desired outcomes. International Journal of Inclusive Education,15(10), 1205-1218. doi:10.1080/13603116.2011.555076 Singal, N., Jeffery, R., Jain, A., & Sood, N. (2011). The enabling role of education in the lives of young people with disabilities in India: achieved and desired outcomes. International Journal of Inclusive Education,15(10), 1205-1218. doi:10.1080/13603116.2011.555076 Singal, N. (2016). Schooling children with disabilities: Parental perceptions and experiences. International Journal of Educational Development,50, 33-40. doi:10.1016/j.ijedudev.2016.05.010 Success Stories. (n.d.). Retrieved from http://www.youth4jobs.org/ The State of the World's Children(Publication). (2013, May). Retrieved https://www.unicef.org/publications/files/SWCR2013_ENG_Lo_res_24_Apr_2013.pdf UNESCO. (2010). Reaching the marginalized. EFA Global Monitoring Report 2010.

UNESCO. (2014). Teaching and learning: Achieving quality for all. EFA Global Monitoring Report 2014.

UNESCO: 47 million youth in India drop out of school by 10th standard. (2016, August 17). FirstPost.

Why 45% of India’s disabled are still illiterate and thousands dropping out of schools. (2016, June 28). Hindustan Times. Retrieved from http://www.hindustantimes.com/editorials/why-thousands-of-disabled-children-are-dropping-out-of-our-schools/storyrI2XARDLwafCSUAYV4MQ7O.html Wirz, S., Edwards, K., Flower, J., & Yousafzai, A. (2005). Field testing of the ACCESS materials: a portfolio of materials to assist health workers to identify children with disabilities and offer simple advice to mothers. International Journal of Rehabilitation Research,28(4), 293-302. doi:10.1097/00004356-200512000-00001 World Bank. (2007). People with Disabilities in India: From commitments to outcomes. Retrieved from http://web.worldbank.org/archive/website01291/WEB/IMAGES/DISABILI.PDF

APPENDIX

Appendix 1: Composition of therapists across 20 organisations of the Atma sample

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ABOUT ATMA Atma is an Accelerator for Education NGOs and Social Enterprises in Mumbai and Pune.

Faced with a lack of resources and expertise, high-potential education organisations are often unable to maximise their impact. We help NGOs become bigger, better and stronger by helping them solve their daily operational challenges and plan for their future growth  through our flagship 3-year Atma Accelerator Programme. Founded in 2007, Atma has worked with 50 educational NGOs and reached out to 69,000 beneficiaries from the underprivileged communities in the Mumbai, Thane region and Pune.

Vision Quality Education for All Children Mission Building capacity of education NGOs to achieve organisational sustainability and scalability thereby enabling delivery of quality education