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Oral Presentation - 2.5.3

Shaping the Future for Persons with Intellectual Disabilities in India Pramila BALASUNDARAM (SAMADHAN)

The paper shares the initiative taken by an NGO , SAMADHAN in New Delhi in the field of research in intellectual disability. SAMADHAN , was established in 1981 with dual focus on children with Intellectual Disability and their mothers impacted by poverty . Three crucial issues dictated direction: • Disability • Women's empowerment, and • Poverty SAMADHAN began its services by responding to needs of children with intellectual disability, their parents and specifically their mothers. These children were doubly handicapped by their disability and by the deprivations caused by their poverty. we realized that the lack of research data was a serious impediment to establishing relevant information based services. In the 1980’s there was no clear documentation on even the numbers affected by intellectual disability, individuals and families, in the country. The National Census and National Sample Survey of the population differed in their approach and consequently so did the results. Some knowledge from research studies existed in academic circles, Government bodies and NGOs but it was fragmented and inaccessible for policy change, improvement of practice and the training of professionals and care givers. There was a serious shortage of quality research documentation or data on research undertaken in the country and even less dissemination. This situation had serious repercussions on the provision of services for persons with intellectual disability in our country and on NGO’s like SAMADHAN which were striving to provide need based support systems.. We needed to address some serious, basic issues relevant to us as an NGO and not as a research body . For instance: • What are the most important needs of people with ID and their families in India? • Terminologies, assessment protocols, policies and practices all needed attention to fit the Indian context. • How are NGOs currently meeting the needs? • How can good practice be documented and disseminated? • What are the obstacles to Government policy implementation? • How can NGOs and Government work together in partnership to provide the proper protection of rights, care and education and development of potential? • How can we increase the support to individuals and organizations wanting to undertake research • What are the opportunities that exist or should be provided to take this initiative further?

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Hence the formation of APKID in March 2010 , which is a joint effort of SAMADHAN, and IASSID (International Association for the Scientific Study of Intellectual Disability) located in Australia . At the second Asia Pacific Regional Congress and with efforts of the Downs Syndrome Association of Singapore , SAMADHAN was identified as a possible partner of IASSID in India to further its objectives.

IASSID IASSID (the International Association for the Scientific Study of Intellectual Disability) in Australia, was founded in 1964 .It is an interdisciplinary scientific non-profit association of individual scientists who

work within Special

Interest Research Groups within (SIRGs) rather than via national or regional chapters. IASSID has organized 13 world congresses and a number of regional conferences in Europe with the first Asia Pacific Regional Congress in Taiwan in 2005 and the second in Singapore in 2009 .. IASSID’s main focus would be developing research in India. As the following data reveals, almost 50% of research in mental retardation in India upto 2005 was medically based.

Research in mental retardation in India Presented at the APKID workshop by Dr Narayanan based on paper by Reddy SHK, Narayan, J 2007 .NIMH. Period studied: 1950 – 2005 (divided in 5 year interval) Total studies :

1180

Aspects covered General Medical Psychological Psychosocial Spl. Educational Historical Prevention and early intervention Rehabilitation

No. Of Studies 99 492 212 94 131 34 44 74

Challenges At the very outset it was realized that in India, we were dealing with a Heterogeneous population & a combination of disabilities. Research was also a relatively new area with

limited work done in the past. Most of the studies done

are survey research so limited expertise is available in the field & technical and financial supports are yet to develop. Social science and biological research has become more globalised with an increased focus on research in developing countries.Global catastrophes like infectious diseases, forced migrations, civil war etc

attract considerable research

attention. Research in the context of disabilities involves some of the world’s least powerful and most vulnerable populations

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BUT Research studies were needed to bring about policy changes, Improve treatment, practice and train professionals ,To identify core areas for future research, carry out research studies, document existing scientific data, develop channels for easy accessibility of research studies using ICT ,Promote knowledge on ID via workshops, seminars and conferences and develop partnerships with experts in the field and national and international professionals,

Global Concern The Third World Quarterly. Volume 32 (8) 2011 puts it this way ;“ It is generally agreed that disability in the global South is of central concern to the emerging worlds but has largely been under-represented in global development debates, discourses and negotiations. Disability studies were constructed as a field of knowledge without reference to the theorists, or the social experience, of the global South. There has been a one-way transfer of ideas and knowledge from the North to the South in this field. ” It was to address these concerns that SAMADHAN formed APKID – the Association for the promotion of Knowledge in Intellectual Disability.

• APKID • Association for the promotion of Knowledge in Intellectual Disability SAMADHAN had already done some exploratory work and identified the crucial need for a research based focus group in India. The main issues identified were that numbers of those affected are important for Government to plan proper services and allocate appropriate budgets and that Knowledge is needed to improve the quality of life, dignity and inclusion of people with disabilities . Some knowledge from studies existed in academic circles, Government bodies and NGOs but it is fragmented and inaccessible for policy change, improvement of practice and the training of professionals and care givers. SAMADHAN had already done some exploratory work and identified the crucial need for a research based focus group in India. It was recognized that Research methods may require adaptation to overcome barriers in language ,approaches to data collection adjusted to ensure that local beliefs and practices are considered and respected and additional steps are required during data analysis to ensure that interpretation and meaning have not been altered during translation

Collaborative activity with IASSID It was expected that a collaborative activity with IASSID would • serve as a platform for building research capacity in India as well as in other S. Asian countries • support existing expertise within the region, • foster on-going development of current good practices; • provide a conduit to enable good practices currently in the region to be disseminated • provide mechanisms to bring international expertise • support the development of new research and evidence-based practices

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The first APKID meeting was held on the 13th of March 2010, 25 pan-India participants & representatives from Singapore were present at Samadhan, New Delhi and IASSID Australia representatives participated via skype .The areas of research identified by the participants is as given graphically below

1st APKID Meeting – March 13, 2010

2nd APKID Meeting – April 28, 2011 The second meeting was held at the India International Centre (IIC) on April 28th 2011. Themes explored were :• Develop an online resource hub of current data, with links to research studies, journals and organisations • To develop initially a national network on research and other allied services • To undertake a situation analysis on ID with respect to research, data and documentation. • To identify gaps in priority areas for further research and documentation. • To move into other areas of disability knowledge at a later date in order to become progressively inclusive. • Carry out research studies focussed on ID with wide collaboration and mentoring from within the network or internationally. • Facilitate knowledge sharing within and beyond the network with conferences, seminars and other joint events.

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IASSID Academy Workshop. Mapping Future Research in Disabilities An IASSID Academy workshop was held in New Delhi, India from 29 through 31 March 2011 on Supporting Research Initiatives in Intellectual Disabilities.” by APKID . It was facilitated by Dr Libby Cohen, Associate Professor James Cooke University, Singapore. The key outcomes were: •

A recognition of IASSID as a contributor to future research activities in India

•

Draft list of priority topics for workshops and future research in

• •

The official registration of APKID under the Societies Registration Act of Delhi . A core group & a steering committee that can guide future NAPKID activities

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Formation of a Review Committee once the organization has been formally registered.

Research Framework The Research Framework presented by Dr Libby Cohen .James Cook University .Singapore shows the smooth flow of an ideal research initiative. Identification, synthesis of existing work, design, implementation and finally the results which should lead to positive intervention

A key concern that surfaced during both meetings and the workshop was whether and how South Asian countries could work together to increase research and knowledge dissemination on Intellectual Disability in the region. The answer to the first question was “yes” , primarily because of several challenges that countries in this region have in common

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Common Regional Challenges • Fatalistic religious outlook leading to apathy • Negative perspective on disability and mothers • Stigma and exclusion of disabled persons and their families • Steeped in superstition – e.g. evil eye causes disability • Segregation of educational systems • Prevalence of class distinction – e.g. clans, castes

Historical Perspective of Disability – South Asia & India • Commonalities of culture, traditions and beliefs between South Asian countries and India • Influence of Buddhism and Hinduism in India spread to other South Asian countries • Muslim, Mughal invasions and British colonization.

How can we in South Asia contribute to each others’ research work? The Way Ahead, The South Asia Network • Extend support to South Asian countries and their status of ID • Document work done in these countries • Recognize that benefits are not only for persons with ID but all other stakeholders. • Research is not only the domain of the professionals and scholars • Possible collaborations .IASSID is one such opportunity. ARC of AFID is another with tremendous potential.

Points to consider • Teachers and practitioners need to share their experiences with empirical data with the professional community • Qualitative research needs focus to establish facts in socio cultural issues, with every individual with disabilities respected, and his/her rights ensured • Transparency in conduct of research with informed consent of the participants ensured. • Results to be documented systematically and shared in professional forum/journals • Single case research methods to be carried to establish effectiveness of teaching strategies • Funding for research to be enhanced and accessibility made easier

References. Dr Krishna Vadiparti . .Consultant Social Scientist Dr Anil Cherian Director .Community Health and Development .Emmanuel Hospital Association Dr, Jayanthi .Narayanan . Free Lance and Former Associate Director.National Institute for the Mentally Handicapped. Prof. Libby Lohan. Associate Dean. James Cooke University .Singapore.

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