Global-Report-Living-Colour-dr2-2

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Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY 103 including second order deinstitutionalization (See Table 10 below). Another challenge is the separation from determining what a person wants and needs from the provision of those services and supports. In far too many places, eligibility and design of services and supports are made by the same entity providing them. This is clearly a conflict of interest. In other places people who have an intellectual disabilities risk losing their place to live if they don’t “behave”. This is entirely at the discretion of those in charge and with no recourse. In yet other places, people with intellectual disabilities remain segregated in large workshops or day programmes which are dependent upon the income from contracts for services with businesses or income from government for that person; thus the person who might want to do other things with their life is denied the choice and control to do so. For services and supports to be truly person centric, money from governments must be in tune with the wants and needs of the person. The CRPD is about the rights of persons with disability, not the rights of organizations providing services and supports. There is a big difference. In countries without institutions, efforts should be made to help policymakers, advocates and national and local governments determine and implement the path to fulfillment of the promises of Article 19 without resorting to building institutions. The temptation of creating large places for people with intellectual disabilities to live is great and on the surface a ready solution to supporting people. However we know from countless studies, exposés, the experience of policymakers and experts and conversations with people who were previously institutionalized that regardless of the amount of money spent, that institutions by their very existence, separate and segregate people with intellectual disabilities from their community, and from their family. In addition, once an institution is built or remodeled it takes decades, not years to build community capacity and to get people out and eliminate the institution as an option.
104 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY In countries with large residential institutions the implication of Article 19 is that community capacity for all needs must be developed, and that people currently in institutions need to be supported to move to communitybased settings, with those settings being consistent with what others in their society can access. Institutions, as long as they exist, consume important resources that could be better utilized in community based supports and are on their face, a violation of the intent of Article 19. A challenge for those countries where institutions have been closed, as well as for countries developing systems of services and support for people with an intellectual disabilities, is developing alternatives. We have been calling this development “Second Order Deinstitutionalization.” Many of the services and supports developed over the past decades have been smaller images of what took place in the institutions. Family based organizations can be a driving force to help systems of services and supports improve to meet the needs of families and of people with an intellectual disabilities. Table 6: Supports to Individuals in High Income Countries: Issues and Future Direction Issue Waiting Lists Eligibility for disability supports tied to income Access to inclusive services Government cut backs and austerity measures Institutions Future Direction Timely access to needed services and supports Eligibility tied to objectively assessed need Inclusion as the “default” option and gradual elimination of segregated options People with disabilities receiving guarantees of support Regular housing in the community and support for families
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