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 135 continue to make more services available to children if the child lives outside the family home (institutions, foster homes, long term care facilities). Despite the rights of the child to a family, public policy continues to force families to give up their children to the state in order to access basic supports. For adults with intellectual disabilities, existing disability and/or income supports are either not available or insufficient to support people to become independent. There is a clear need for investment in the provision of disability related services and supports to children and adults with intellectual disabilities. In high income countries, these services and supports need to be separated from eligibility for income supports and they must be flexible and portable. In low income countries, few government-funded supports exist and some inconsistent and limited supports are delivered by International NGOs (INGOs). Governments must develop a clear overarching policy consistent with the CRPD and in particular the right to live and be included in the community which guides development spending and to which INGOs must be accountable. ‰ The major source of support and care which people with intellectual disabilities receive is from their families yet families receive little or no support from communities or governments. The preamble to the CRPD and Article 23 clearly recognizes that families require supports to assist their family member with a disability to realize their rights. Nowhere is this more important than in the realization of the right to live and be included in the community. Families are the main vehicle through which this right may be achieved. Families are the first and often main advocates for inclusion in education, access to services, employment and housing. Yet public policy in most jurisdictions has
136 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY not been developed in “family friendly” ways; they receive little or no information or emotional support in caring for their family member; they do not receive compensation for lost income due to caregiving responsibilities; they have little access to services which provide short breaks in their caregiving responsibilities and as they age and become unable to provide care and support, they have no access to supports to plan for the future of their family member. Many of these supports can be developed in both low and high income countries at the community level through investments in community based organizations and existing mainstream services and programmes. Where some good examples in public policy have been developed to support the role of families, concerns have been raised about reinforcing the dependence of adults with intellectual disabilities on their families. It must be absolutely clear that supports to families are not to be used as a substitute for supports to the individual but rather without both, inclusion in the community cannot be achieved. ‰ Even when people with intellectual disabilities live in the community they are often isolated and excluded from the community. In high income countries where service infrastructures have been developed they continue to be professionally driven, modelled after institutional care; segregated and isolating. Governments must introduce a reorganization of the service delivery system which requires a paradigm shift by all actors (disability and other service providers, public policy actors, families, employers, educators etc.) towards a system which is directed by the needs and aspirations of people with disabilities. This shift will mean changes in a service industry which has been entrenched in a way of working for many years, but as with the processes of deinstitutionalization and inclusive education have taught us, progress requires
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