The brain tumor had sapped much of Cynthia Churchill's physical strength. But not her spirit.
When Jack Delzell first met Churchill, she was in a nursing home, confined to a wheelchair and dependent on a personal aide to get out of bed. She was difficult to understand and had to communicate through a special book. But her first words to Delzell were as plain as day: "Get me the (blank) out of here."
"She couldn't talk, but she got that out very clearly," recalled Delzell, coordinator of the Community Reintegration Program run by Persons Assuming Control of Their Environment, an independent living center in Urbana.
Churchill, then 54, had been a local teacher, poet, artist and world traveler. With PACE's help, she was able to live in a supported apartment for about a month before returning to the nursing home, where she died. That brief freedom, surrounded by the things she loved, helped her make peace with her death, said longtime friend Elaine Jacobson.
"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.
He has charged the department with developing a long-term plan to support older people in the community. A preliminary report is due in December or January.
"Clearly there will be some things that we'll be able to do immediately," he said. "There are some things that may take three years or so to do."
One big challenge is ensuring there are enough support services and housing available for those who want to move out of nursing homes and other institutions.
Generally, Johnson said, seniors' homes and assets are sold or dispersed by family members when they move into nursing homes. If they have no income, housing or money to pay utilities, moving out may not be possible, he said.
Family support is also crucial. About 90 percent of the care for seniors who do move out is provided by family members, Johnson said.
Many seniors and individuals with severe disabilities or medical needs would require aides or personal assistants to help them with household chores, grocery shopping, cooking or even basic tasks like bathing and getting out of bed. Some community agencies, particularly in smaller towns, worry that they don't have enough home health-care workers to handle an influx of new clients, Black said.
It would be difficult to simply redeploy employees now working at state or county institutions, because their patients would be scattered across the state, Black said. Besides, many of those employees are union members with solid wages and benefits – which is not always true of home health-care workers, he said. Community-based agencies are constantly being asked to do more with less, and some of their employees haven't had a raise in five years, he said.
The roughly 5,000 union workers at state-run centers for the developmentally disabled earn about $13.50 an hour, according to Anne Irving, director of public policy for the American Federation of State, County and Municipal Employees Council 31 in Illinois. Their counterparts at private community and residential agencies, also represented by AFSCME, earn $8.50 an hour, on average, but usually have no pension benefits and more limited health insurance. Home health-care workers, paid through a program run by the Department of Human Services, make even less, Irving said.
There's also the issue of follow-up care. Someone has to track patients to ensure they get the services they need, medical and otherwise, Black said.
Black recalled the movement three decades ago to close down state mental institutions and move those patients back home, for many of the same reasons cited in this debate – patients would do better in their own homes or communities where they could be close to families and friends.
But many communities didn't have the support network to provide the needed counseling, support and financial help, he said. That led to problems with homelessness and a backlash in some cases, he said.
Champaign-Urbana is "light years ahead of other communities" in this regard, Black said, but other communities are much less prepared.
"Let's not rush into this unless we know how many people we're talking about, how the transitions will work, where the bulk of the transitions will be made, and do we have community resources to deal with that," Black said.
As always, money is a key issue. Under the proposed act, if a person moved from an institution to a smaller group home or apartment, the money the state would have spent on institutionalized care would follow the individual.
Black said state "bean counters" worry about how to track the money for a person who changes living arrangements several times – say, from a nursing home to a group home to a day-training program to an apartment with home-health aides.
Nursing homes set staffing levels based on filled beds, group homes have to pay salaries and utility costs, and training programs have transportation expenses. With lags in state reimbursement, the money trail could get complicated, he said. And all the agencies involved want guarantees they will be paid in a timely manner.
"How quickly can we get the money to follow the individual?" Black asked. "All you have to do is look at our track record of funding Medicaid expenses and you say, 'Oh Lord,'" he said.
The problem nursing homes cite with the Community First Act is that it requires every dollar spent on institutional care to follow the individual, even if he or she doesn't require as many services as the nursing home provides. They'd like to see that concept further defined.
"It would have taken money from other providers to fund the program," said Pat Comstock, spokeswoman for the Illinois Health Care Association.
"What we would like to do is get all the parties involved in this around the table and find a way to talk it out so the resident benefits and providers don't get hurt," she said.
Unions make similar arguments. The real issue, AFSCME's Irving said, is that there's not enough money for community-based services overall. Particularly, she'd like to see the state invest in better wages and benefits for community health-care workers, creating "stable, living-wage jobs" to reduce turnover. The biggest issue for families is finding dependable care, she said.
"We think the system needs more money – not just a redistribution of current funding," Irving said. "Inevitably you're taking money away from someone else."
Ideology and politics
Irving has a problem with advocates who want to do away with anything larger than eight-bed group homes, when some individuals may not have the means or desire to live elsewhere.
"It sort of gets down to ideology in my mind," she said. "Folks who say we're for choice, except not the choices we say you shouldn't have. You shouldn't have the choice of a state facility. That's the wrong approach. It seems to me the approach should be what do people need."
Those who see it as a civil rights issue see no reason to keep state-run institutions open. Seven other states, including Minnesota, have eliminated them altogether.
"The only reason anyone can contend that there's a need for institutions is that the alternative in the community is not conceived or designed in an adequate way," said K. Charlie Lakin of the University of Minnesota's Research and Training Center on Community Living. "There is absolutely no one who cannot be well-cared for in the community."
It's a matter of leadership, Lakin said. To use inadequate community support systems as an excuse to keep people "segregated and out of society is pretty much the best example of blaming the victim that I can think of," he said.
Irving counters, "If their message was, 'We want to build up the community system so it's so good we don't need state facilities anymore,' fine. Then we can have discussions about whether it makes economic sense," she said. "But to say we're going to start closing all the state institutions, and let's hope that money ends up in the community ... it doesn't work that way in Illinois. Money has a history of disappearing. It puts people at risk.
"Do we have concerns about what would happen to our members if all the state centers closed? Of course we do. We're a union," Irving said. "But I think this is a policy discussion, and I think the policy doesn't make sense: we're going to close all the state facilities and hope for the best."
The politics can't be ignored, Black said. When the state's Lincoln Development Center was slated for closure, unions and parents of some residents objected and legislators from that area complained that it would devastate the community. So the state reconstituted a portion of the center into four large group homes, over the objections of disability advocates pushing for more community-based care.
Providing a choice
Ford said proponents of the Community First Act aren't trying to put nursing homes out of business, or force people to move who don't want to.
"That's the last thing we want to do," Ford said, but added, "Needing some kind of long-term care doesn't mean you will always need to be in some kind of facility. What we're trying to get to with the Community First Act is that people have that choice: You don't need to live in a nursing home if you don't want to and your treatment professionals say you don't need to.
"I don't see it closing down nursing homes. It might downsize some nursing homes. My feeling is, that's going to happen anyway."
The baby boom generation is reaching retirement age and will use its clout to change the way seniors live out their not-so-golden years, she said. More and more seniors are demanding the right to "age in place," she said.
Comstock said her association doesn't oppose the idea of moving people into less-restrictive settings where appropriate. It favors a continuum of services, from institutions to home-and community-based care.
Nursing home representatives are also taking part in the Department on Aging's long-term planning effort, Johnson noted.
"There's no doubt that there are probably some individuals in nursing homes who don't need to be there. But there aren't tons of them," Comstock said. "Our residents require more complex care and are sicker and sicker because we're bridging a gap that hospitals and other providers aren't providing.
"Nursing homes are not all horrible places," she added.
Black said those who support the Community First Act should start "serious discussions" with state officials about how it could work – what the model would be, how much it will cost, how much the individual will pay, what taxpayers will bear and who will be accountable for the services provided.
Ford said officials at DHS are open to the idea and are brainstorming with her group. They're researching what the state could put in place initially, to start it down this road, and how other states have handled the transition. But she's not sure how long change might take.
"What it runs into every time is the whole money issue," she said.
The incentive to do something is strong. In just about every state, she said, one of the biggest drains on the Medicaid budget is institutional care.
"I'm convinced that in the end we can work out a solution," Ford said. "It's being done all over the country."
But she added, "I don't think we're going to make everybody happy."