Long Article on Deinstitutionalization Legislation in Illinois
is here. An excerpt, but the whole thing is worth reading:
"She said she knew she was going to die. She just needed one last chance to be on her own and independent," Delzell recalled.
He has heard the same thing, in so many words, numerous times over the five years he's worked with the Community Reintegration Program, which has helped more than 1,000 people age 59 and younger move out of nursing homes statewide.
That sentiment is at the heart of a movement to end institutionalization of seniors and those with disabilities, publicized last month by a four-day statewide tour by the Campaign for Real Choice in Illinois. The advocacy group sponsored the "freedom ride" to push passage of the Community First Act, which would compel the state to spend money on support services allowing the disabled to live in their communities, rather than institutions or large group homes.
The bill won broad support in theory but eventually was sidelined by questions about how it would be implemented – and the financial impact on the state, its employees, nursing homes and the disabled themselves.
"I don't think anybody is opposed to deinstitutionalizing people with disabilities, and court cases have indicated that's what you should move toward," said state Rep. Bill Black, R-Danville. "We are a heavily institutionalized state. We have over 80,000 disabled people in public and private institutions and nursing homes. I don't think anybody's proud of that.
"But the devil in this business is always in the details. When we started to have hearings and get down to how it will be implemented, we had more questions than answers."
Ann Ford, executive director of the Illinois Network of Centers for Independent Living, said the bill will probably be reintroduced in January. She's working with officials from the Department of Human Services and the Department on Aging to iron out some of the problems.
"I don't have answers yet," Ford said. "What we're doing right now is kind of going back to the drawing board and looking what we can do."
The issue is an emotional one, pitting parents against parents in some cases. The most outspoken advocates liken state institutions to "prisons" that promote segregation of those with disabilities. They cite figures showing Illinois lags behind most other states in moving individuals out of institutional care.
State officials say they've made efforts to move toward more community-based care, for both seniors and the disabled. The Department of Human Services supports programs allowing people to live "in the least restrictive setting, consistent with their needs," said spokesman Tom Green.
Charles Johnson, director of the Illinois - Department on Aging, said the state already spends about $250 million a year on its Community Care program to help seniors stay in their homes. The money is used for home services and adult day-care services. The program has grown steadily over the last two decades, now serving more than 41,000 people.
"We're committed to the concept," Johnson said. "Clearly there are more and more people who are in need of these services."
The trick is to find a way to increase support for seniors in the community while continuing to care for those who need higher-level care in institutions, he said.