"One-size-fits-all" programs don't always serve their purpose.
Take Polly Spare, mother of two children with severe mental retardation. When she tried to enroll her daughter, Sandra, into a preschool, she found none of them could meet Sandra's needs."There were no services for handicapped children," she said. But instead of giving up, she created her own preschool.
Thirty-nine years later, Spare, a resident of Doylestown, Pa., is the president of Voice of the Retarded, which is a national, non-profit organization that advocates services for people with mental retardation according to individual and group needs.
She will speak today at the annual conference of the Mental Retardation Association of Utah, held from 10 a.m. to 1:30 p.m. at the Developmental Center in Amer-i-can Fork.
"These are national issues that will affect the future services for people with mental retardation," she said.
"A lot of people believe that we don't need facilities for the severely handicapped," she said. "They instead believe that (people with disabilities) should be in the community." The integration concept works well in theory, she said, "but it is not a reality."
"This is a complicated issue," said R. Dean Robinson, president of the Mental Retardation Association of Utah. "We need to put a handle on it and get it under control."
Spare proposes continued Medicaid funding for long-term care for the disabled, and residential living alternatives, including institutional care, which best suit individual needs. But not without criticism.
"People don't want the large centers," she said. "They feel that (all) people can function in the community. They say that institutions are horrible, and it's true, some are. But now that they have been upgraded, many would be better off placed in an institution."
Spare's son, Christopher, 39, is deaf, blind, and uses a wheelchair. He is also severely mentally retarded. When she placed Christopher in a public facility, she learned that he was being abused. She then tried a group home, where he became ill and showed signs of unexplained neurological disorders.
"Christopher had a lot of regression as a result - he was malnourished. They were making $250 a day plus, and couldn't even feed him."
Nevertheless, Spare has faith in institutions. "Some people (such as Christopher) simply cannot be independent in the community," she said.
A larger, more complete facility, along with community involvement with volunteers from the medical profession and residents, could have remedied the situation, she said.
"We need a full array of services for those who need it," Robinson said, from dental care to medical care and attendant services. Institutions are the most cost effective way to provide such services, he added.
There is only one facility in Utah, in American Fork, and increased state or federal funds are not currently available to build another. Although the situation is looking up under the Clinton administration, "it's been a tough battle for us," Spare said. "We're fighting the people with the money. That makes it difficult."
However, alternatives to federal funding do exist. "Maybe we can get private funding," Robinson said. "You can dream a little bit, couldn't you?" Robinson also has two sons, ages 37 and 40, who are severly mentally retarded.