Families of persons with disabilities should be equipped with the resources to provide adequate care and avoid institutionalization, several experts said at a panel discussion today at the United Nations.
“Governments need to assist families with persons with disabilities, making them able to support their disabled members,” said Alexei Tulbure, Moldova’s Permanent Representative to the UN, who will chair the next session of the Commission on Social Development in 2008.
“We must do everything in our power to protect the rights of persons with disabilities, using families to achieve this goal,” he said.
Most Eastern European countries with economies in transition had significant problems in supporting families with persons with disabilities, Mr. Tulbure said. Moldova had some 12,000 children – many of them with disabilities – in institutions because their parents could not afford to take care of them or had left for other countries in search of work.
Historically, the first approach to disability had been medical – seeking to “fix” disability and “make it go away,” said Sue Swenson, Executive Director of the Arc of the United States, the nation’s tenth largest non profit organization. This had not worked, and the rehabilitation approach had been tried, in an effort to accommodate person with disabilities to what society expected from them. This involved providing those support and services that allowed persons with disabilities to produce and otherwise fit in society.
The third approach had been to investigate what persons with disabilities wanted for their lives, and to provide that – “the rights approach,” she said. “My son, who has a learning disability, loves opera. We have a duty to support him in his right to be part of a community and enjoy the very best of human creation.”
But there was a forth dimension, Ms. Swenson said. Disability had a social impact, and there was a need to ensure “that all families that include persons with disabilities can enjoy the support they need.” Her organization was against institutionalization and for providing support to families, so that they could have loving connections with their members with disabilities.
“Often children with disabilities feel a sense of control instead of a sense of support from their families,” she said. Instead, families should be given adequate support, including public support, so that they could be independently able to take care of their disabled members.
Women with disabilities have a right to have a family and children, said MiJoo Kim, Director of the Seoul-based Women with Disabilities Arts and Culture Network. “I am married, with two wonderful children,” she said, adding that her organization was trying to foster change by advocating for mothers with disabilities and offering them an art and culture education programme.
Article 23 of the recently adopted UN Convention on the Rights of Persons with Disabilities recognized the right to marry and found a family, she said. “Many people still think that mothers with a disability will have disabled children. There are many prejudices against women with disabilities, which prevent many of them from having children,” she said.
Governments had a role in providing social services, she said, because “if there is no assistance from the public sector the burden is transferred to the family.”
Megan Kirshbaum, Founder and Executive Director of the California-based National Resource Center for Parents with Disabilities “Through the Looking Glass,” said the Center was providing parenting skills, education and support for parents with disabilities in 41 countries.
Some 15 per cent of families with children in the United States had one or both parents with a disability, she said. The average out-of-home placement of children of parents with an intellectual disability in the United States was 40 to 60 per cent, she said; with the intervention of “Through the Looking Glass” it was as low as 2 to 7 per cent.
There was a natural process of adaptation between parents with disabilities and their babies, and the “ingenuity of parents and adaptability of children over time” solved many problems. Adaptive techniques and equipment could greatly help both parents and children.
While the expertise of her organization had resulted in new legislation in Idaho, Kansas and California, “there is still the need for a lot of legislation to deal with all this,” Ms. Kirshbaum said. “We need to work across disabilities to achieve public interventions,” she said, adding, “It is important not to overprotect and isolate families with disabilities, but rather to provide them with the right skills for parenting.”
The panel discussion was organized by the United Nations and the New York NGO Committee on the Family to mark International Day of Families, whose theme this year is “Families and Persons with Disabilities.”