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 29 often are invisible, but they are very necessary for the inclusion to be real. A survey response from India said, “One of the positive features of Indian society is that Persons with disabilities generally live with their families in majority of cases. However there are times when natural parents are no more and when no support available by the extended family, they face a severe problem. This problem is very acute among nuclear families and in urban areas.” At the same time many of the concerns of parents are very real. For example, there is the potential for their sons and daughters to be exploited and abused, and sometimes the wishes of the person who has a disability may be unrealistic because of financial or other constraints; therefore parents may justifiably want to ensure that there are safeguards to protect their sons and daughters. The obligation on families to be responsible for their family member who has an intellectual disabilities needs to be carefully balanced against the right of the individual to make his or her own decisions. ISRAEL ¨My family lives on a Kibbutz ("Beit Alfa"). Three years ago I moved to Kibbutz Hefziba where I live with my friends who have down syndrome. I wanted to live here in this neighbourhood. I chose to live with my friends. I am independent in my choices in life. I sleep alone in the room where I have my own shower. I am independent at work. I work in the" Izrael" Kibbutz at the dining room. I love living here in the Hefziba Kibbutz¨ – Irit Regev However, there are challenges that persons with intellectual disabilities face with their families. The most common is overprotection. A focus group in Nicaragua reported that overprotection by families limits the participation and free expression of people with intellectual disabilities and also leads to their feelings of insecurity. A group of self-advocates in Europe explained it this way, “We need your support but we are the ones to makes the choice!” Self-advocates in Hong Kong had a message for their families: “We need your support. We need your respect. We need your understanding. We need you to have confidence in us. We need you to learn to change with us. We need you to welcome us to be part of the family.
30 Inclusive Communities = Stronger Communities GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY We need our brothers and sisters to work together to support our dreams and aspirations. We hope we can learn from each other.” Another issue is that families sometimes fail to recognize the rights of a person with an intellectual disabilities as separate from the rights of his or her family. This may result in parents’ decisions to sterilize their daughters to eliminate any chance of pregnancy or to ease care for personal hygiene. In extreme cases this has led to surgery and hormone treatments to prevent children from growing and maturing physically to make care by parents easier. Further, the right of children to grow up as part of a family is often ignored because of disability-specific systems. In countries with institutions, families are given the option to place their child in a residential facility instead of pursuing options for alternate family care such as fostering and adoption.
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