In 2016, Keystone Human Services and The Hans Foundation will develop the Keystone Institute India: An Educational Institute on Disability, Community, and Innovation. The Institute will be focused on social change around disability issues, with the goal that it becomes a powerful source of ideas and action towards the full participation and engagement of Indian people with disability into everyday life. The Institute will maintain an administrative office in New Delhi, but will focus its work nationally.
This collaborative Commitment to Action will strengthen and support families and people with disability to be in leadership roles in the development of an inclusive society, and will identify talented Indian change agents to build and engage a national leadership base capable of moving India and Indian citizens towards a future of promise. This includes access to a home, a sense of belonging, freely-given relationships with others, community presence, fairly compensated work, and a good education for all Indian citizens, including those with disability. This work will be conducted across numerous disability sectors to advance exploration of new and different options of community-based support. It will also thoughtfully include issues unique to girls and women with disability in order to ameliorate the severe inequities they face.
The Institute will have four major strategies in moving towards future of promise. First it will build the capacity of the family movement via training, fostering national and international linkages, and developing networking platforms across the country. More than 400 family members will be directly engaged in efforts to connect strong regional and state family groups, pair those with international family groups, conduct consultations and planning activities, and develop cohesive efforts which build towards inclusion.
The Institute will also fuel the inclusion of people with intellectual and psychosocial disabilities into the national disability conversation, in concordance with the UN Convention on the Rights of Persons with Disability (CRPD), through foundational training events and consultation. This will include leadership identification and mentoring with targeted engagement events that reach more than 1,200 persons directly, with one-third representing people with lived experience, one-third family members of a person with disability, and one-third professionals.
Third, the Institute will direct resources away from charity-based models of service and towards equity-based models which build towards real social change. This will include the identification and cultivation of organizations that should be strengthened and promoted, as well as the cultivation of government support for and funding and maintenance of inclusive, community-based programs.
And finally, the Institute will conduct education and program design consultation that support the creation and testing of new, non-institutional, culturally-relevant models of service which rely on natural supports and community-embedded practice, and which encompass the strengthening of vocation, home, recreation, family life, and spirituality. These will include shared living models, deinstitutionalization projects, supported living models, wage employment and entrepreneurial endeavors, and partnership with universities for evaluation and research evidence.
Provide consultation and support for government (The National Trust) to move towards a framework of effective, relevant, and affordable services which are consistent with a just and equitable society and best practice in disability support.
--November 2016-October 2018: Meet with government and THF leadership, develop and recommend policy, advise and consult, share international practice, support community based service models. Utilize policy experts from U.S. and elsewhere to craft forward-thinking government policy recommendations in-line with international best practice. Submit "snapshot" report sharing results and recommendations from engagement events in April 2018. Submit Deinstitutionalization Roadmap report in October 2018.
Advance positive, forward thinking about disability and equality across India, seek partners, identify leaders, promising practices, and organizations, and encourage progressive practice.
--November 2016-April 2018: Hold 45 small and mid-size engagement events across India to generate interest, cultivate partnerships, and source and spread good ideas of inclusion, belonging, self-determination, and family empowerment to multiple population areas across India.
--May-November 2018: Publish the results of these sessions in a compelling snapshot report of the situation and needs of people with disabilities, their families, and advocates across India.
--November 2016-October 2018: Offer at least 10 large training events focusing on core ideas to build capacity, engage national attention, and find, build, and strengthen Indian leaders in their teaching about and implementing change.
-- November 2016-April 2017: Develop partners in disability online forum.
--November 2016-October 2017: Communicate the work of the disability sector in India through engaging social media and web content, and by connecting partners, stakeholders, and emerging leaders in creative ways.
Develop a roadmap towards deinstitutionalization and prevention of institutionalization for people with developmental and mental health disabilities.
-- November 2016-April 2017: Meet and connect with numerous deinstitutionalization and watchdog groups during the course of travel in India.
-- November 2016-April 2017: Investigate the realities of institutionalization for Indian citizens with mental health disabilities and developmental disabilities.
--October 2017-October 2018: Assess the conditions and the extent of institutionalization in India, and draft a report summarizing findings and recommendations with a focus on strategies to move forward to be shared with government partners.
As highlighted in The Hans Foundations overview report on Residential Care for the Disabled in Delhi, according to the 2011 National Census there are more than 27 million people living with a disability in India. Recognizing that many people with disability are often not formally identified, it is likely that this is a significant underestimate.
Throughout India, and the world, people with disability experience a quality of life which is much below that of typical citizens. For many, these experiences include being kept apart from their community, whether by discrimination alone, or by complete separation from family and community into segregated care facilities and institutions. There are few community-based supports which enable people to stay in their communities, and only limited opportunities exist where people with disability have true equal access to society. The experience nearly always means a life which is powerfully controlled by others, with few opportunities for people to grow, develop their gifts, and participate fully in every aspect of society. The result is often a life marked by isolation, rejection, stigmatization, and even brutality and danger.
Options for care and support for people with intellectual and developmental disability within India appear to be reliant exclusively on family caregivers with little to no support, or in highly segregated, congregated settings in either case, deeply separated from everyday life. As Keystone has learned through its initial study visits and planning activities, there are few community-based services dedicated to people with intellectual disability. Reports on the larger institutions, nationally (Human Rights Watch, 2014) and locally (Asha Kiran, 2012), paint a grim and deadly picture of institutional life for adults with mental illness and psychosocial disability in India. Alternatives for people with developmental and intellectual disability seem to be rare, especially community-integrated residential options, and particularly for adults. What is present appears to be mostly institutional options, both large and small, and services that offer charity models of care, with little focus on a developmental approach.