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 37 and be included in their community. Self-advocates expressed that while they are consulted on decisions about where they want to live, the final decision is usually made by the family or a legal representative. In Slovenia we heard: “Yes, person is consulted, but parent/guardian makes the decision.” And, in Belgium a self-advocate remarked “... since there are long wait lists and no place available there is no real choice.” Throughout the region a consistent challenge identified is the impact of austerity economic measures on the provision of supports needed to have a life in the community. In the Americas, we found significant intraregional differences. The realities for people with intellectual disabilities and their families in many countries in Latin America were more similar to those in Africa, Asia and the Middle East than to North America. However, similarities across all countries in the region include that families provide the majority – if not all – of the care and support for their family member with a disability across their lifespan; and, that people with disabilities are most likely to live in poverty. The extent to which individuals and families are supported varies greatly throughout the region. In North America and some countries in Latin America, supports and services – including disability-related supports, income supports, and health care – are more readily available. In other countries there is nothing available for individuals or for families. Similar variations are also noticeable in the area of education. It is important to note that while the countries currently providing supports and services are comparatively doing better than other countries in the region, we know that the supports and services being provided often fall short of meeting the actual needs of individuals and families and need to be enhanced and improved.
38 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY Despite years of successful deinstitutionalization efforts in North America, institutions remain far too common throughout the region. For this study, our regional coordinator in Africa visited 11 countries to conduct focus groups and meetings and supported the collection of 14 country surveys from African countries. Meetings were conducted in local languages and the regional coordinator was able to provide an analysis of the discussions. As a result, our knowledge about the region – one where little to no state support is available to individuals or families and large scale institutions are relatively uncommon – was vastly enriched and the African perspectives on living and being included in the community are better reflected in the report. While the lack of institutions and provision of supports enabled a focus on more natural community-based supports, it also reflects a stark reality that there are no public resources being used to support people with intellectual disabilities and families. As reflected throughout this report, it is largely families – many living in absolute poverty – who are providing all of the support and care for people with intellectual disabilities. In addition, if a child with an intellectual disabilities cannot go to school, then the mother cannot work outside the home resulting in a double disadvantage. Commenting on the efforts of families the coordinator said, “Many are stumbling in the dark trying to find the right path unassisted; the vast majority are trying to offer their child a decent life, sometimes at enormous personal cost – both emotional and financial.” Beyond meeting the day to day needs of their family member with a disability, families in Africa struggle with societal prejudices and myths that disability was a punishment from God.
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