It took Louis Summers, who is deaf and physically disabled, more than three years to prepare himself to live independently. But it took only a single directive issued by the state one day last February to keep him dependent in a nursing home.
The nursing home is in south-suburban Harvey, where nurses and aides are available round the clock. Summers had been set to move to a less costly Chicago facility that emphasizes independent living for the disabled when the state cut the funding for its home-services program and froze the number of people eligible to have personal assistants. That meant there would be no money to pay for the assistant he would have needed to help dress and bathe him, the cost of which he couldn’t pay himself. So he’s still in the nursing home. “I feel trapped,” he says. “I want to get out and become more independent. I want to get job training. I want to get a job. But the state is keeping me in a nursing home where I am fully dependent on the staff.”
State officials blame the home-services cuts on the rising deficit. Yet it will cost the state far more to keep Summers in a nursing home than it would to provide him with independent health care. “For health and financial reasons it’s bad to foster dependence,” says Karen Gerbig, a public educator for Access Living, a Chicago-based not-for-profit advocacy group for the disabled. “In the name of saving money the state is actually spending more money. It doesn’t make sense any way you look at it.”
The irony is not lost on state officials, who acknowledge that roughly 4,000 disabled residents have lost the right to a personal assistant since the freeze went into effect in February. By midsummer that number could rise to 5,000. “It costs about $1,200 a month for the state to pay for someone to be institutionalized; the average home cost is about $600 a month,” says Melissa Skilbeck, a spokeswoman for the state Department of Rehabilitation Services, which oversees the home-services program. “We are proud of our home-services program. We hope there’s a way to fund it so we can reopen intake.”
Summers, however, doesn’t want to wait. He was born and raised in southern Illinois, and he’s been in and out of hospitals and nursing homes since 1989, when he was hit by a train. “I was walking along the tracks, and I didn’t see the train coming,” says Summers, who was born deaf. “I’ve been in a wheelchair ever since the accident.”
He stayed briefly in a hospital, after which doctors transferred him to the Rehabilitation Institute of Chicago. “Louis has a dual disability, so he’s more vulnerable to being shuffled around the system,” says Tom Benziger, an organizer with Access Living who first met Summers about two years ago. “I lost track of him for a while. He was in and out of hospitals. Then I discovered that he was in a nursing home in Harvey.”
Benziger and therapists at RIC encouraged Summers to think about living independently. Along with other organizations for the disabled, Access Living members have fought to force public-transportation agencies to fit buses with electronic lifts so that people in wheelchairs would not be dependent on special shuttle services. They have also pressed for laws that require access ramps in restaurants, theaters, and other public places. “Disabled people are often marginalized,” says Gerbig. “But disabled people are capable of living independent lives if public facilities are made more accessible.”
One major issue for the disabled is changing federal and state rules so that more money is provided for personal assistants. “I don’t need around-the-clock care,” says Summers. “I don’t need to be in a hospital room all night. I can get training. I can still use my hands. I can work. I’m not happy in the nursing home. It’s lonely there. Most of the people are older. It’s not the right place for me. I’d be much better off somewhere else where I could be more independent.”
With help from Benziger, Summers was able to secure a spot in the Silent Co-op apartments on the city’s northwest side. Then the state announced the freeze on personal assistants. “I needed a personal assistant to work at least a few hours a day to get into the co-op,” says Summers. “But the state said that since I was already in a nursing home I couldn’t get a personal assistant. That means I could never get out of the nursing home. It was a catch-22.”
Most agencies that provide personal assistants charge about $14 an hour–as Stephanie Renner discovered when her son Patrick was disabled last year after he was shot. “Right now my mother, myself, and Patrick’s girlfriend are taking care of him, but it’s very hard,” she says. “We don’t have the money to pay $14 an hour. If I got some assistance, I could pay someone $5 an hour. But the state won’t help us at all. All Patrick needs is someone for a couple hours in the morning. Someone to help him get out of bed, get dressed, take a shower, and help him with his bowel program.”
In addition to its freeze the state also now requires all those who want it to continue paying for a personal assistant to demonstrate every year that they’re severely disabled. “I have cerebral palsy, and yet I have to be tested each year to see if I qualify for a personal assistant,” says Gwendalyn Jackson, a south-side resident who uses a wheelchair. “I have to prove yearly that I am disabled. That’s ludicrous.”
Many activists believe the freeze and the changed eligibility requirements are first steps toward eliminating all funding for personal assistants. “They want to make people more dependent on nursing homes or their families,” says Gerbig. “That’s only going to cause more strain on the families.”
State officials say they want to keep some funding for personal assistants. They say the changes have less to do with health policy than with the fact that the state owes about $748 million in overdue bills–the reason Governor Edgar called for across-the-board cuts or freezes in government services. “The home-services budget was $69 million for this year,” says Skilbeck. “Next year it will be about $65 million–that’s a 6 percent cut. The governor’s directive was to do everything we could to preserve people who were receiving care. That means we have to close intake, while maintaining the program for those who already have personal assistants.”
State officials say that the federal government must share some of the blame for the cutbacks. “The federal dollars that support these programs are provided as reimbursements,” says Skilbeck. “We can’t be reimbursed on a dollar until we spend a dollar. Well, if we don’t have the money up front, it’s hard to pay for the services. And with the state owing so much money, we don’t have a lot of money up front.”
It would be irresponsible for the state to continue full home-care programs if it doesn’t have the money to pay personal assistants on time, Skilbeck says. “You’re dealing with an individual who may not get by without a paycheck. A nursing home or an institution has more cash in reserve.”
Advocates for the disabled don’t buy this argument. They contend that state and federal policies are shaped by the powerful nursing-home lobby. “It’s easier for the bureaucracies to stay the same than to change,” says Gerbig. “We need a whole new way of looking at these things.”
So far activists have had little impact on the powerful Republicans in Washington and Springfield who shape health-care policy. For months they have asked Louis Sullivan, secretary of the federal Department of Health and Human Services, to set aside a larger portion of medicaid funds for home care. But Sullivan has spurned their requests. He argues that such decisions should be made by individual states.
In early May ADAPT took the issue to the streets, protesting a speech Sullivan made before the University of Illinois here. Sullivan ignored the protest and refused to meet with the group, which seems to be a policy with him.
ADAPT members staged another protest at the State of Illinois building, but Governor Edgar also refused to meet with them. “In the past the governor has promised to meet with us, but he never does,” says Gerbig. “So last week we took over the 16th floor of the State of Illinois building. We had about 30 people up there until they shut the power off for the elevator. It was incredible to see the nondisabled people saying “Turn on these elevators–I have to get somewhere. Why are you punishing us?’ We said, ‘Now you know how we feel.’ They said, ‘It’s not my fault.’ We said, ‘Please understand. This is what we go through all the time.'”
Summers did not intend to take part in those demonstrations. But he was downtown on other business and got swept up in the protests. “The transportation system that brought Louis downtown failed to pick him up,” says Gerbig. “He was in a bind. And he wound up staying overnight at a hotel and meeting a lot of the protesters. He’s been politicized by this. His life will never be the same.”
At the very least Summers hopes the actions will change the home-services policy so he’ll be able to leave the nursing home. “I want to move ahead with my life. I don’t want to be stuck in Harvey.”
Art accompanying story in printed newspaper (not available in this archive): photo/Lloyd DeGrane.