Long-term concerns for parents of disabled children

States grapple with how to care for growing numbers of adults with disabilities who can no longer live at home.

Like any mother, Mary Seabaugh worries a bit when her son goes out bowling, to the movies, or out to dinner with friends. Other mothers can at least rest assured that such concerns will diminish when their sons and daughters mature and move out of the house.

But Mrs. Seabaugh's son, Charles, may never leave home. At least, that's her hope. He's 40 and is diagnosed with Down's syndrome. Her abiding concern is what will happen to him when she and her husband pass on. "I worry about it a lot," says Seabaugh. "But we don't know what else to do. There aren't a lot of options, and Charles doesn't want to leave the house."

The Seabaughs' concerns are shared by thousands of parents in similar circumstances. The large baby-boom generation includes a correspondingly high number of the mentally retarded and developmentally disabled (MR/DD). For decades, nearly 80 percent of such individuals have been cared for at home. But as the leading edge of these baby boomers hit 55, many of their parents are reaching a point where they're no longer able to care for them.

Social scientists and others say state agencies are unprepared for the rising numbers of MR/DD individuals entering the system. "We hear a lot about the coming impact on society of the aging baby-boom generation," says David Braddock, head of the Department of Disability and Human Development at the University of Illinois-Chicago. "The aging of family caregivers who have relatives with developmental disabilities living with them is one of these critically important dimensions of the aging of our society."

Of 1.9 million developmentally disabled individuals living with family caregivers, nearly 500,000 are 60 or older and are expected, within a few years, to need new living arrangements. The best option for many of these individuals may be small residential facilities, but these facilities are ill-prepared to accommodate such a large influx.

Already, the system is showing signs of strain. Waiting lists have developed in many states and total 70,000 to 80,000 cases nationwide. Long lists and delayed placements have led to class-action lawsuits against several states. four such cases have been settled out of court and a fifth is in negotiations.

The settlements have "dramatically increased" available services in the affected states, says Charlie Lakin, director of the Research and Training Center on Community Living at the University of Minnesota. But he is not optimistic lawsuits are a broad solution.

Even when options exist for aging parents of MR/DD children, the former are not always quick to take advantage of them. Parents who have often defined their lives by a caregiving relationship are understandably reluctant to have their children leave home.

Sandy Kownacki of Arnold, Mo., a single mom in her mid-50s, is already concerned about the long-term care of her daughter Amy, who has been diagnosed with autism.

Ms. Kownacki is familiar with a small group home where two developmentally disabled young women live who are about the same age as Amy. Kownacki has placed her daughter in the home while she traveled "just to get her used to it - to another place where she could be comfortable."

Kownacki is not ready to part with her daughter. Yet for the group home to remain financially viable, it needs a third full-time resident. The slot could be filled by another if Kownacki does not take advantage of it.

For aging parents who have made the choice to actively seek an alternative home for their disabled children, it's still not straightforward. For example, Betty Martin and her husband, both in their 70s, have had their son Curtis on what Mrs. Martin calls an "informal" waiting list for more than five years to place Curtis in an apartment with a state-supported caregiver. But the demand is so great, only "emergency" cases are being placed.

Thus, from the Martins' perspective, they may have to pass on before the state will place Curtis. But when that happens, it will be on an emergency basis, and he could go anywhere from a group home to an institution, depending on what is immediately available.

Some aging parents of MR/DD children believe that, after caring for their offspring for 40 or 50 years at their own expense, rather than having institutionalized them, they have built up a sort of equity that their respective state governments should now draw on to fund alternative care. But they're generally finding bureaucracies have short memories.

The Seabaughs have written into their will that Charles remain in their house after they die. Although the house is paid for, they don't have the funds to endow a caregiver. They hope the state will pick up the expense but have no official confirmation of that.

"I have no idea what will happen," says Mrs. Martin. "We've made our position clear to [state officials]. But really, we're going on blind faith.

(c) Copyright 2001. The Christian Science Monitor

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