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 27 enjoyment of the rights of persons with disabilities”. Given the situation of most individuals who have an intellectual disabilities and of their families, this is a daunting challenge. If communities are not welcoming, if services and supports are not available, parents often find that contributing to the exercise of the most basic human rights for their family member with a disability – such as going to school or playing in a public park – is a major challenge. A recurring theme from focus groups was “What will happen to my child after I am gone?” The country survey from Myanmar (Burma) wrote, “Families feel that a person with an intellectual disabilities is also one of their family members. However, they have been feeling that sometime it is a burden. They don't [know] where they will take them when they die.” However, the stories we heard also demonstrated that the more individuals were included in their communities the less was the burden on families. SPAIN ¨My family did not want me to live in a home away from them, but we decided to try independent living. If all went well perfect, but if not, then nothing would happen, ,I could come back to their home. I know that always I have my family with me. The problem comes when you have no one and you are helpless¨ In every country, our members confirmed that family (however defined) was the foundation to an inclusive life in community. There was full agreement that for children the family structure was critical. Simply stated our members believe that children need a family in which to grow, learn, thrive and be nurtured. Where life within the nuclear or extended family is not possible, then another family is the preferred option – rather than options such as orphanages, group homes or institutions. The role of family with respect to adults with intellectual disabilities is a little more complex. Our consultations and supporting data confirm that the majority of adults with intellectual disabilities live with family. What is less clear is the extent to which this life within family is within the cultural norms of the particular society, whether living with family is a choice made by the individual and/or their family, or if living with family is simply the result of there being no other more appropriate options.
28 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY The parents were concerned about how the self-advocates would care for themselves and avoid harassment from the community. – Lesotho The other complicating factor in commenting on the role of family is that invariably, both families and individuals, reported that inadequate supports were being provided to families to assist in their role as primary caregivers to their sons and daughters. There are many situations where continued living at home is the preferred and typical choice, but this is possible only when adequate supports are provided. In many countries it is the general expectation that adult children will leave the family home upon reaching adulthood. This is not possible for people with disabilities if other options do not exist. In such situations, even in the presence of adequate home supports, choice is being denied. Families throughout the world told us that they do not deny their responsibilities for their family members, whether as a child or adult. They told us clearly that they do not wish to shift this responsibility to society or government. What they want – what they need – is support in fulfilling that responsibility. They need support that will provide for the health and well being of their family member and also their family. The lack of a welcoming community or of supports and services does not limit the responsibility for families to “contribute towards the full and equal enjoyment of the rights of persons with disabilities”. The growth of the selfadvocacy movement of persons who have an intellectual disabilities has demonstrated that many people who have an intellectual disabilities are very skilled at expressing their wishes and being much more independent than their families had ever believed. The focus groups of families and of people who have an intellectual disabilities showed the two sides of the coin of the right to autonomy and the need for support. When people are included in their communities and when supports are provided in very natural ways those supports
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