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 69 for people with intellectual disabilities and their families vary greatly around the world and are largely dependent upon location. The services and supports that are readily available in urban areas are vastly different than those in rural areas, if they are available at all. In some countries services and supports are available for some or most people, though rarely did we hear families and selfadvocates speak in glowing terms about the formal services and supports that are available to them. In Israel, a father of two sons with intellectual disabilities said “We fight for inclusion for our sons. Why should it be so hard? Why is the burden always on the parents?” This was a common theme in high income countries. In low income countries the population at large receives only limited access to school (for families who can pay for fees and uniforms) and some public health services. In these countries access to disability related supports and services is almost nonexistant. In large parts of the world specialized services (when they exist) – those tailored to the needs of people with intellectual disabilities and their families – have primarily been created through the hard work of families of people with an intellectual disabilities, sometimes with financial support from government but oftentimes with no such support at all. We found no comprehensive and reliable source for data on what services and supports are available in each country, though there is one invaluable resource available. In 2007 the World Health Organization Published and Atlas on intellectual disabilities the introduction states, “At present, information on resources and services for persons with intellectual disabilities is scarce, fragmented, and relates mainly to high-income countries. To find data about availability of services, their nature, and access to them for a given country is hard, and such data does not exist at a global level. Large differences are seen between high-income countries and countries with low or middle
70 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY incomes with regard to the availability and the type of information about national services and resources. Considerable information exists for some high-income countries; detailed reports have been published, based on extensive information systems. By contrast, documentation is much more scarce and inaccurate in countries of low or middle income. Most of the time, such documentation is based on specific experiences of a given group of individuals, a type of diagnosis, or a territory. However, at all income levels, to find an overall figure that will describe the situation at the national level is difficult.” 2 The World <strong>Report</strong> on Disability published in 2011 by the World Health Organization and the World Bank describes barriers to assistance and support for the population of people with disabilities and highlights some particular issues for people with intellectual disabilities. “Most assistance and support comes from family members or social networks. State supply of formal services is generally underdeveloped, not-for-profit organizations have limited coverage, and private markets rarely offer enough affordable support to meet the needs of people with disabilities.” 3 While these resources present policy and legislative level information, there is little information about services and supports for people with intellectual disabilities and families. The information that is available speaks to what is “on the books”, not the availability, quality or appropriateness of services and supports. The stories and experience of parents and people with intellectual disabilities which are presented here are an important and powerful source of knowledge and so crucial to improving their lives in the years to come. Our survey respondents were clear that the services and supports that are available are segregated and institutional in nature:
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