For 10 years, Kathy Patterson was on a waiting list.
Her parents, now in their 60s, have taken care of her by themselves and at home for 29 years. Her severe mental retardation makes it impossible for her to live alone and her aging parents worried about where she'd go if something happened to them.So Fred and Roe Patterson contacted the state of New Jersey in 1987 about getting their daughter into a residential home for people with disabilities.
It took a decade for it to happen.
The Pattersons' story is repeated again and again throughout the nation as parents who in the 1950s and '60s decided to keep their disabled children at home are now getting too old to care for them.
It's a crisis, Liz Moore says.
Moore and about 1,200 other people are gathered in Salt Lake City to try and solve that and other problems facing the 7.2 million Americans with mental retardation.
The Arc, an organization dedicated to the needs of those with mental retardation, is holding its 48th annual convention at the Salt Palace.
The three-day conference, which runs through Sunday, will address advocacy, education, early childhood services, prevention and other issues facing people with mental disabilities and their families.
But the organization is especially concerned about the epidemic of waiting lists for the disabled sons and daughters of aging parents. Moore, an assistant director of The Arc, estimates 220,000 Americans with mental retardation are on waiting lists for residential, vocational and other services.
The irony is that these are people whose parents have cared for them at home and at their own cost, not requiring state expense or intervention. Moore said some aging parents have been told it would be faster to get state services they now need for their children if they simply died, because then states would be forced to step in.
To try and solve that problem, The Arc will focus its efforts in 1998 on reducing waiting lists and changing public policy in states throughout the nation. The organization, which has 140,000 members in all 50 states, will also try and educate younger families about planning for the future of their disabled children.
The Arc is the largest volunteer organization devoted to those with mental retardation in the country. Also during the conference The Arc will present the Marriott Corporation with their annual Circle of Inclusion Award for its efforts of inclusion for mentally disabled customers and employees. Previous winners include Target department stores, Johnson & Johnson, Sears, Gerber Products and Woolworth Corp.