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主頁 / 相冊 / Chicago, Spring 1992 51
- ADAPT (727)
Reades Chicago May 29, 1992 Neighborhood News Insert Text Box: Prisoners of bureaucracy: state keeps the disabled in nursing homes at twice the price of home care. The reason? Budget cuts! Photo by LLoyd De Grane: A man, seen through the spokes of a manual wheelchair wheel, sits in a sporty manual wheelchair wearing no shoes. Looking at the floor thinking, he rests his chin on his fist. He is in a cinder block room with a crucifiction on one wall behind him, and a Virgin Mary statue in the corner on his other side. Caption reads: Louis Summers article: By Ben Joravsky 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 stare 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. lt 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 oust is about $600 a month," says Melisa 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 bom and raised in southern lllinois, 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 l didn't see the train coming," says Summers, who was born deaf. “l‘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. “l 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. "l 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. l can work. l‘m not happy in the nursing home. lt'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 oflicials 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. ln 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. “ln 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 lllinois building. We had about 30 people up there until they shut the power off for the elevator. lt was incredible to see the non-disabled people saying ‘Turn on these elevators-—l have to get somewhere. Why are you punishing us?’ We said, ‘Now you know how we feel.‘ They said, ‘lt’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." - ADAPT (743)
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737. Photo with Bob Kafka - ADAPT (731)
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The Guardian, May 27,1992 Photo by Tom Olin: A disabled man dressed all in white (Tim Craven) lies on his back to crawl under a police barricade. Beside him a woman (Barbara Bounds) in a wheelchair leans toward him as if to support and protect him. She is facing the barricade and has a sign taped to the back of her chair that says "People Before Profits." Two police men lean over the barricade toward Tim and another sticks his arm in between them. Behind them are even more officers. On the near side of the barricade yet another officer stands, bending almost all the way forward toward Tim on the ground. Caption reads: Protesters in Chicago got our of their wheelchairs and lay down in front of the barricades, forcing employees to walk over them. Disabled militants bring hope to health reform By Mary Johnson Chicago-Hundreds of members and supporters of ADAPT (American Disabled for Attendant Programs Today) took to the streets here May 10-13 to continue their fight for in-home attendant services and to move the national health-Cate debate into the rights arena. The group is aiming to force the American Medical Association—whose headquarters are here—and the American Health Care Association, the nursing home lobby, to replace “home care" with "attendant services“ which consumers control “in the location and manner of our choice,“ says ADAPT. ADAPT, which under the name American Disabled for Accessible Public Transportation won the national fight for wheelchair lifts on buses, intend their street protests as the “flashpoint," says founder Wade Blank, for national health care reform. There is nothing medical about assistance to bathe, eat or dress, these activists charge. Target: Louis Sullivan Learning that Health and Human Services Secretary Louis Sullivan would be speaking at University of Chicago commencements on May 10, the 250-strong ADAPT contingent cancelled a Mother‘s Day march and stormed into the university‘s pavilion, planning to disrupt Sullivan's speech. Police and Secret Service agents promptly ejected them, but the group spent the afternoon handing leaflets to graduates‘ families. Sullivan has been a perennial ADAPT target for his refusal to meet with them to discuss Medicaid policy on nursing homes. The next day, ADAPT surrounded the HHS regional offices in downtown Chicago, managing to get up to 15th-floor offices before being blocked by police. Others in the group cordoned off exits, forcing building employees to climb over them, and at one point succeeded in getting department officials into the street to listen to the group‘s demands. Ten protesters were cited and released. On May 12, ADAPT moved to AMA headquarters, blocking adjacent streets and crawling up to bang on office windows. Police barricaded the doors, but protesters got our of their wheelchairs and piled themselves at barricades, forcing AMA employees to step over them when their offices shut down early. Police moved to arrest four people they believed to be in command. The four included Mike Auberger of Denver and Arthur Campbell of Louisville, Ky., who were released later in the day. Garnering media attention Though ADAPT planned to press state targets only on May 13, the state barricaded its downtown State of Illinois Building on the two days before. Guards locked wheelchair access doors and forced wheelchair users to submit to police escort on elevators. On May 12, Chicago ADAPT member Paulette Patterson sued the state over discriminatory denial of access. Though District judge Milton Shadur failed to grant a requested temporary restraining order, Patterson’s attorney, Matthew Cohen, said he had “no doubt the suit had an effect.” On May 13, ADAPT took over the building while city police squabbled with state police over jurisdiction and mostly kept their hands off protesters. Longtime Chicago activists noted ADAPT‘s success in garnering media attention. Chicago Lawyers Guild member Ora Schub said ADAPT‘s protests got more coverage than Gulf war demonstrations in the city — even when antiwar protesters shut down Lake Shore Drive. There seems little question ADAPT has begun to have an impact beyond disability rights. As one of the only groups to take the health reform issue into the streets, ADAPT, says Blank, sees its role “as focusing the debate on a bigger political issue” within health-care reform: services as a legal right. “What the disability rights movement can do is humanize society,” he says. Tennessee ADAPT recently forced the hospital power structure there to accept a state financing fee that will fully fund Medicaid (see sidebar). Lawyer Gordon Bonnyman, who was involved in the Tennessee campaign, remembers a “poverty advocate friend" sending him a clipping about an ADAPT protest in Orlando, Fla., in 1990, when the group first took on the American Health Care Association over the attendant services issue. He and his friend “were despairing about health reform," he said, “asking ourselves when the people who were really affected were going to begin to influence the discussion. "l said, ‘l just don‘t see that ever happening until people are willing to stage some direct actions,‘ " Bonnyman recalls. “Then she sent me that clipping from ADAPT's Orlando action and she said, ‘Here are the folks who could do that.'" “My response at that time was, ‘That’s nice, but how many people is that?‘ I now think: ‘Enough.' ADAPT really does have the ability to have an impact nationally on health care issues-far beyond their own issue of personal attendant services." The group plans similar actions in San Francisco this fall. Second, sidebar, article inserted on this page: Saving Medicaid in Tenn Six people in wheelchairs moved swiftly a cross across the drive-way of the Tennessee Health Care Association in Nashville on March 31. Chaining themselves together, the small band waited for members of the Tennessee Hospital Association to come out of their meeting. It was a classic ADAPT action. This time ADAPT was leading a coalition of health care reformers that would force the state‘s powerful hospital lobby to drop its opposition to a state licensing fee intended to prevent a $1.1 billion loss in federal Medicaid funds. Tennessee pioneered the concept of leveraging matching federal Medicaid funds by levying a state financing fee against hospitals that took Medicaid patients. With its 70-30 match, the state took the $300 million collected from participating hospitals to obtain another $700 million in federal matching funds. With that tactic, Tennessee was fully funding its Medicaid program and feeling no financial crisis. By 1991 it was in use in 37 states, with many reporting similar success. The federal government, alarmed at having to pay out increased Medicaid funds to stares that used this method, devised a plan to derail it. A little-publicized 1991 law made such licensing fees illegal unless levied against all hospitals equally. It counted on opposition from hospitals that took no Medicaid patients (and therefore had no reason to agree to the fees) to fight state passage of licensing fee bills. That opposition was swift in coming in Tennessee. The state is home to Hospital Corporation of America and HealthTrust, two of the nation's largest hospital chains, and numerous other hospitals. The Tennessee Hospital Association, of which Hospital Corporation of America is a powerful member, opposed the fee. A state bill to extend the fee to all hospitals was virtually dead, said Tony Garr, head of the Tennessee Health Care Campaign, until ADAPT of Tennessee, led by organizer Diane Coleman, got involved. “The only way we could bring attention to the issue was to hit the streets,” said Garr. “ADAPT played a very important role" in helping other groups in the Tennessee Health Care Campaign “move to direct action,” said Gordon Bonnyman, a lawyer who has worked with Medicaid issues in Tennessee. Beginning in January, Coleman and Tennessee ADAPT members staged weekly actions, targeting the large hospitals as villains who were destroying the state’s Medicaid program. The first week a group of nearly 200 people, headed by ADAPT, marched to the Hospital Association's offices. The next week the group staged a protest in front of Baptist Hospital, which opposed the fee. The group hung a sign asking “Are you Christian?" on the hospital administrator's portrait. The group‘s fifth action targeted Thomas Frist, who heads Hospital Corporation of America. “We had a small casket, with dollar bills draped over it, and a sign that read, “Thomas Frist, how many must die for your $1.235 million in annual cash compensation?” said Coleman. The protests had the desired effect. Frist, reportedly upset by the negative publicity, capitulated the day the group surged on Health Care Association headquarters with the cross and withdrew his corp0ration’s opposition to the fee—reportedly urging legislators to vote swiftly to pass the law to avoid more unfavorable publicity. “There have been Medicaid cuts for the last 15 years in this country, and they have gone mostly unreported," said Bonnyman. “ADAPT galvanized people. Without them, the whole thing would have gone down the toilet." M.J. - ADAPT (699)
A group of ADAPT protesters stand and chant in front of an almost life sized portrait of IL Governor Edgar with flags on eithere side of it. All are Chicago ADAPT members. From left to right they are a woman (Julie___) in a Chicago ADAPT "ADAPT or Perish" tshirt, a woman standing, a man in a wheelchair (Rene Luna) holding a poster that reads "nursing home industry owns Edgar." All three have power fists raised in the air. On Rene's right side is a man (Fred Stark) in an ADAPT tshirt with the no steps logo but Free Our People written across the bottom; it was our transition shirt when we were transitioning from American Disabled for Accessible Public Transit to American Disabled for Attendant Programs Today. - ADAPT (725)
Photo by Tom Olin?: A large group of ADAPT protesters on the lower level of the State of Illinois Center are facing the camera and chanting. A woman with a bull horn (Paulette Patterson) is leading the chant; sitting on the back of her chair is her daughter. The group from left to right: First row: small woman in red, Mark McTimmes, and Paulette. 2nd Row: Two unknown ADAPTers, Allen Leegant (standing), Barbara Bounds, on Paulette's other side Tim Sullivan. Behind Mark and Baraba is Arthur Cambell in blue sweatshirt beside Gene Rodgers. Behind Sullivan is Judy Ziegler, standing and Frank Lozano sitting on floor. Behind all of them are several more rows of chanters and then some kind of display board. - ADAPT (708)
Chicago Defender, Thursday May 14, 1992 ADAPT shuts down Illinois center ADAPT protests budget cuts by Dobie Holland Hundreds of wheelchair-bound demonstrators shut down the State of Illinois Center after they converged on the building Wednesday to protest the impending budget cuts in the Home care program for the disabled. The shut down occurred after members of the Americans Disabled for Attendant Programs Today (ADAPT) were denied access to the governor’s 16th floor offices. The group retaliated with a blockade of escalators and elevators. Although ADAPT members faced barricades outside the center, once they had stormed inside, security police operating the elevators refused to allow most of the wheelchair-bound protesters upstairs. Mike Ervin, one of the Chicago coordinators for ADAPT, said they had no choice but to block the paths of pedestrians in the building by setting up wheelchair blockades of escalators and elevators in the center. They demanded a meeting with the governor. Gov. Jim Edgar was in Springfield but it was not clear by the Chicago Defender's press deadline if he would meet with the group. Gary Mack, a spokesman for the governor, said the State of Illinois has one the most “liberal programs" in the country for the disabled and cuts are being made “across the board” in the wake of a severe budget deficit. Mack said the program will lose $3 million — “a small amount" — a reduction from $68 million to $65 million. Mack added the governor was not responsible for denying the protesters access to the elevators. "They (security) have been trying to keep this place operating," Mack said. “But as l understand it, we are letting some people up here (on the 16th floor). One oi those people allowed up in the elevators to sit in the governor’s 16th floor lobby was Paulette Patterson. Patterson, who was not a member of the protest group, said she was denied access to the elevators on Tuesday when she came to the building to eat breakfast. Patterson, 35, of Chicago, said she has filed a discrimination suit against the state because she was not allowed free passage through the building “simply because I was in a wheelchair. “l was not with this group before,” she said. “But I am a member now." Illinois Attorney General Roland Burris, commenting on the conflict between security personnel and protesters, said during a Tuesday press conference: “My job is not to judge anybody but to make sure no one's rights have been violated."