When Keith Richan started looking at options for his mentally retarded and physically handicapped son 30 years ago, he kept getting the same advice: Put him in the Utah State Training School.
Instead, Richan and his wife decided to care for their son themselves at home.Ann Gonzales' handicapped twin daughters take up all of her time. Although one goes to school, the other can't because fluid accumulates in her lungs. Gonzales and her husband provide around-the-clock, total care at home.
"We love them dearly," she said, "and don't regret caring for them ourselves. But I'd like some help with the feeding and lifting. I'd like to get away once in a while - even for a short time. If there was support out there, we'd use it."
After years of providing constant care, at great financial savings to the state, these parents have discovered that their children are not eligible for pre-vocational training or supportive work programs because they have never been institutionalized. (With even one day in an intermediate care facility, the services are required by federal regulations.) And other programs for which they might be eligible are underfunded and therefore unavailable.
Several parents testified before the Joint Health and Social Services Appropriations Committee during consideration of the budget for the Division of Services to the Handicapped. They asked why parents who save the state money and services by providing as much as possible themselves receive the least help when they need it. They also asked lawmakers not to "force us to institutionalize our children to get state funds."
"Programs for the handicapped, like programs for the mentally ill, are simply underfunded," said fiscal analyst J. Winslow. "I don't suggest my recommendations will meet the need, and there's no money for growth. We talk about a large number of handicapped people needing services. Conservatively, they make up 3 percent of the population, and we probably serve a quarter of those."
The state does provide a number of services including in-home health aides and attendants to help keep the handicapped in the community, rather than in institutions, said Theron Olsen, division director. "But the system addresses a prioritization of needs, and we don't even come close to having the resources to meet most of them."
Last year lawmakers allocated $300,000 to family-support programs, and the governor's and fiscal analysts' budgets both suggest it be funded again, but Olsen said that even with ever-tighten ing eligibility, there are probably 12,000 people who could use the help - and some need it desperately.
The Association for Retarded Citizens asked lawmakers to grant equal access to community services to those who are disabled, regardless of whether they have been cared for at home or in an institution. They also asked for an end to the practice of "eliminating services to people who reside with their families, rather than people who reside in state supported residential services when program cuts are necessary."
Such intent language, said ARC President Kris Faw-son, would end discrimination against people with disabilities who live with their families and would guarantee an equal opportunity to access DSH services.
"We do need the services for those in the community and for those in institutions," said Carola Zitzmann, mother of a handicapped 24-year-old and co-chairman of the Legislation Coalition for the Handicapped. "This is not a competition. But we mustn't help one at another's expense. I hate to see them keep moving the money from one place to another, robbing Peter to pay Paul. Both groups need help, and you can't keep taking from one service without hurting the other."
Concerns were also raised about what will happen to disabled adults when their elderly, care-giving parents die or can no longer care for them and about the long waiting lists for programs that are available.
"Families are falling apart," said Marilyn Call, director of the coalition and mother of an autistic 12-year-old. For seven years, her daughter was on a waiting list to enter a group home. "For two years, we were prisoners in our own home because of her behavior problems. It isn't that we didn't want to keep her home. We couldn't any longer.
"I talked to a woman who said she had thought about killing herself and her (handicapped) daughter so the rest of the family could have a chance."