Making a life in the community.

• Author: Wright, Barbara
• Position: State governments transfer disabled citizens to community-based care

States are closing their big impersonal institutions and helping older people with developmental disabilities find better living arrangements.

Norma cared for Ray, her retarded son, for 57 years. She always had trouble making ends meet - first as a single mother and then as a retiree from the public school system on a fixed income. She spent many sleepless nights fretting about who was going to care for Ray when she was gone. A few weeks after her 78th birthday, she felt pains in her chest and called the hospital. An ambulance carried her away, sirens wailing and lights blaring, to the complete bewilderment of Ray. She died on the way to the hospital. The county Department of Mental Retardation did not know of Ray's existence until a nurse from the hospital called for an emergency placement. Ray was sent to a nursing home, where he will stay until a more appropriate place can be found.

Ray is one of a growing number of people with a developmental disability such as mental retardation, cerebral palsy or autism, whose family can no longer provide care because of age, infirmity or death. Ray suffers from the double jeopardy of being old and mentally retarded. He and his peers have been called "the invisible population" because they live at home and quite often become known to the service system only during a crisis.

The 1990 census suggests that there are at least 210,000 adults age 55 or older with a developmental disability. With the aging of the "baby boom" generation - those born after World War II and into the mid-'60s - that number could reach nearly 400,000 by 2035 when the senior boom is expected to peak. Illinois estimated that in the next 10 years, as many as 3,000 adults with developmental disabilities now living with their aging parents may need community residential services.

States are faced with a public policy dilemma: how to organize and pay for long-term care for older people with developmental disabilities.

"People hear the word long-term care, and they think nursing homes and institutions," says Bruce Blaney, senior researcher at the Human Services Research Institute in Cambridge. "Long-term care should mean family and individual supports."

Traditionally, placement for older people with developmental disabilities has been in nursing homes or institutions. Today, spurred on by a strong advocacy movement, lawsuits and federal regulations, states have been moving people out of nursing homes and institutions and into the...