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Self-Determination at Work

U.S. News & World Report

Cathy and Carleen
Twins Cathy and Carleen, reunited at Carleen's home in Vermont

April 16, 2001 -- Being disabled in America can mean living on other people's terms and by other people's rules. That's because the money it takes to care for the disabled is largely government money, and the government makes the decisions about how that money can be spent.

All Things Considered takes a look at a new effort to make financial assistance work better for developmentally disabled.

listen Listen as U.S. News & World Report senior writer Joseph Shapiro reports on one family's story.

Cathy & Carleen's Story:

Cathy and Carleen were the first of three sets of twins born to a milkman and his wife in the small New Hampshire town of Keene in the late 1950s.

Cathy was born severely disabled with cerebral palsy, a seizure disorder and mental retardation. Like many parents of severely disabled children at the time, Alonzo and Lorraine Neff found they couldn't give Cathy the care she needed.

Carleen and Cathy
Carleen and Cathy at age six months

Carleen Ashley is now married and has children of her own, but still shares the same brown eyes, curly brown hair and easy smile as her sister. And she is still haunted by that spring day in 1965 her sister was taken away to Laconia state school for children with mental retardation. "I remember it like it was yesterday," says Carleen. "I just remember it being awful -- and so hard, it's like, almost like somebody died."

The school was the first in a series of unacceptable homes for Cathy. Carleen talks about the stench in the wards, the moaning, the hollering and the residents banging their heads on the floor. Laconia was eventually closed and Cathy was moved through a series of group homes.

Those family-like settings were designed to be an improvement over the large institutions, and in many cases they were. But for Cathy, living in a group home exposed her to poorly trained staff, and sometimes even cruelty.

Cathy and Chuck Ashley
Chuck Ashley, Carleen's husband, and Cathy out on a snowmobile ride

Carleen constantly fought for better care for her sister. What she really wanted was for Cathy to live with her. But Carleen could not afford to give up her job as a nurse to give Cathy the 24-hour care she needed.

An experimental program called "self-determination" made that possible. Tom Nerney, a long-time advocate for the mentally disabled, developed a trial program. The program sought to take money spent by the state on a mentally disabled person's care and allow that person to make all the decisions about that money should be used for their care.

Cathy and her parents, Alonzo and Lorraine
Cathy with her parents, Lorraine and Alonzo Neff

The family decided that Cathy would use the money to pay Carleen to care her for. Six years ago, the sisters were finally reunited. Carleen quit her job as a nurse, and Cathy moved to Vermont to live with Carleen and her family. The transition hasn't been easy, but those involved in her case say Cathy is a different person -- happy and healthier. She's involved in daily family life and special events -- family meals, birthdays, cookouts -- even snowmobile rides.

Tom Nerney says the program has been a success for its participants. One study found it improved each disabled person's quality of life -- and saved the state money. Yet the amount of responsibility the self-determination model requires may be its biggest hurdle. Not every disabled person has a friend or family member who can help them make it work. And social service bureaucrats are reluctant to give up control of the state's money.

Still, some 40 states have experimented with the model, and a few states are applying the idea to elderly treatment. What may just happen, says Nerney, is a revolution in how the U.S. cares for people.

Joseph Shapiro is a senior writer for U.S. News & World Report and author of No Pity: People with Disabilities Forging a New Civil Rights Movement (Times Books, 1994).

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