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Startseite / Alben / Schlagworte nursing homes
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ADAPT (744)
The Disability Rag July/August, 1992 [This article continues on ADAPT 738, 733,728, 724, 748, 743 and finally 737; however the entire text is included here for easier reading. ] Photo by Tom Olin: A policeman holds a wooden barricade while another tries to pull a protester who is lying on the ground by his pants legs backward and out from under the barricade. The protester is holding onto something above his head. On one side a third policeman seems to be coming over and on the other side a man (Frank Lozano) and his guide dog (Frazier) are coming over. Title: On the barricades With ADAPT by Mary Johnson photos by Tom Olin “I am tired of rules and regulations. And them telling me what you have to do. None of them has worked for me as good as being at home. In nursing homes, they put you on sleeping pills to keep you from getting aggravated with what will occur. “You can’t pay —— you don’t have any money to pay an attendant at night, when you’re on SSI. All of these things they’re constantly cutting. I haven’t been in a nursing home for 15 years — and I don’t plan to go.” It's Saturday night in Chicago. Nearly 300 ADAPT members have gathered in a meeting room in Chicago’s Bismarck hotel, getting ready for the group’s May 1992 assault on the Windy City. People are telling their stories. Many are there because there was a nursing home in their past — or they don’t want one in their future. The next day the group will swoop down on the University of Chicago's commencement exercises. U.S. Department of Health and Human Services Secretary Louis Sullivan is speaking, and some in the group can't believe their late-breaking good fortune at getting another shot at hassling the Secretary who has steadfastly refused to meet with them to discuss redirecting Medicaid funds to in-home attendant services. A planned Mother's Day March to a graveyard — to symbolize how this nation kills its mothers in nursing homes — is cancelled. “I was never for that dead stuff anyway," ADAPT organizer Mike Auberger says. The week's events are debated. Somebody wants to know why they see police taking photos of them whenever there's an ADAPT action. There's an attorney available for people who get arrested, the group is told; they‘re given his name, as well as ADAPT organizers to contact if they get arrested. “I’m telling you — and it’s the most important thing I'm gonna say." Auberger warns the group. “have your medications with you if you're going to get arrested. Have ‘em labelled. No pill boxes; bottles. Make sure it has your name on it — nobody else's. Make sure there’s no illegal substances on you; no weapons. ‘Cos this is going to follow us down the road.” As it turned out, Chicago was mild compared to Orlando's confrontations last fall, in which nearly all ADAPT activists were thrown in jail — some in solitary confinement — for the week. In Chicago, only 10 people would be cited and fined in Monday’s confrontation at the HHS regional offices in downtown Chicago, and only 4 police-tagged “leaders” arrested the next day at American Medical Association headquarters; all were released at day’s end. Perhaps the national outrage in the wake of the Rodney King beating acquittal in Los Angeles a few weeks before had made Chicago police, considered to be some of the most brutal, cautious. The University of Chicago graduation turns out to be a beautiful Chicago spring day. Police and Secret Service are allowing ADAPT members into the auditorium without any hassle. Later, though, Jim Parker is asked to leave. He protests loudly as police haul him out a side door: “Why am l the only one being asked to leave?” About that time Tim Carver of Tennessee simply rolls off into the men's room, unnoticed, to wait out the sweep. Several ADAPT members unfurl a large FREE OUR PEOPLE banner over the wall below their seats, off in the “handicapped section" where the Secret Service have relegated them. Big burly Secret Service men with their walkie-talkies run over quickly and reach down to pull it up. Bob Kafka and Allen Haines are as determined that they won’t succeed. A kind of arm wrestling match ensues with Kafka and Haines holding firmly to the banner to keep it hanging over the wall where it forms a backdrop to the stage area where Sullivan will be speaking. The Secret Service have the advantage of leverage; they’re taller. One especially burly guy finally wrests the pole with its banner away from them and with a contemptuous jerk, flings it high into the bleachers behind them. “Clear ‘em out," mutters an all-business police captain. Four cops to a chair seems to be the agreed-on method of removal. Paulette Patterson of Chicago is removed this way. Over on the side, Anita Cameron and Jim Parker, back in and out of his wheelchair, and Frank Lozano, minus dog Frazier, are scooting down the steps on a side tier, trying to make it down to where Sullivan will speak, but they're caught and removed, too. “Get as close to the doors as possible,” says Bob Kafka to the other activists who have now been ejected from the back of the building. With police blocking doors. clots of ADAPT move to every entrance. Well, almost every one. Jean Stewart and Eleanor Smith use Stewart's crutches to pound on the metal doors, trying to create a disturbance inside, as the graduation ceremonies begin. Inside, though, the noise is barely audible. Nancy Moulton of Atlanta is sitting quietly on the ground, leaning on a door, with her guide dog Nan beside her. “Get up,” say a blue shirted Chicago cop. Moulton doesn‘t move. Nan rests her head on Moulton’s leg and rolls her eyes up at the cop towering over them. Now there are 4 Chicago cops and one guy who must be from the Secret Service hanging over Moulton and her dog. “If you don't move, we’ll have to grab you. and the dog will attack,” the cop persists. Still Moulton sits. “If you’re concerned about the dog, move!” the cop barks. Moulton gets up, worried that the cops will hurt Nan. While some block doors, others pass out leaflets to latecomers. The chants of “hey hey, ho. ho, nursing homes have got to go!" change to “We want Sullivan!" The police have barricaded the exit with blue sawhorses that read “police line." A pickup truck from the University's facilities management is unloading yellow university police barricades. A lady inside the back of the auditorium, hearing the faint chanting coming from outside, mutters, “they're not making friends." She‘s with the university. The University of Chicago is so large that commencement is held in two shifts; a morning one and an afternoon one. Sullivan has finished speaking and the crowd is emerging from the pavilion. They walk down the long fence of police barricades, while ADAPT chants and hands them leaflets: “Wanted: Sullivan. For crimes against disabled people." Inset picture: Beefy policeman with his cap down over his nose leaning forward. Caption: “If you care about your dog, move!” Article continues: It's lunch. ADAPT always feeds its activists. Today it‘s Burger King. Attendants and other walkies pass out cokes and burgers. Nan, Moulton’s dog, gets some much welcomed ice cubes from the big bag under the tree, put into the little folding plastic water bowl Moulton carries with her. A new crowd is coming to the arena. They, too, get leaflets and chants. Tim Craven has been ejected when police found him inside, but not before he and the other two who had hidden themselves in the press box get off a few good chants in Sullivan’s direction. A reporter for Habilitation, a disability magazine out of Seattle, has marched up to Sullivan, she reports, and asked him the questions ADAPT has so long wanted to ask him. To every single question, she says, he has responded, “It's a very nice day." Most of the students don‘t want to talk to a reporter. They have no comment. Some think that it‘s wrong of ADAPT to spoil their special day. Others think the group has a right to make itself heard — just not here, not now. One woman who has read the flyers says that "they don‘t want to be prisoners in nursing homes." A man, who hasn‘t read one, says he doesn’t know what they're protesting about but he thinks they have a right to do it. His daughter is graduating today —— with a degree in special education. Each ADAPT contingent blocking an entrance has its contingent of cops. The two `groups` joke with each other and pass the time in small talk. It's a lot like a chess game, says Haines; this trying to puzzle out where Sullivan‘s going to exit. Just about the time it occurs to several of the organizers who have been trying to psych out from which exit Sullivan will be spirited away that the one exit that has no guards on it is the parking lot entrance, a police car comes screaming down the street, makes an abrupt U-turn, and, at that moment, Sullivan's car, driven by Secret Service, shoots out of the entrance. Several ADAPT wheelers are on his tail in a flash, but it's too late. Sullivan again escapes— but the point, say the activists, has been well made to the over 10,000 people who have attended. Thousands of flyers have been passed out. PHOTO by Tom Olin: Inside a cavernous arena filled with people, two plain clothes police or Secret Service men have an ADAPT person (Bob Kafka) by the arms and are trying to lift him. He is sitting on the steps of an aisle leaning forward. To their right a young man in a button up shirt and jeans, a graduate, looks down at them. Caption reads: Getting to see Sullivan. Not. ADAPT makes no effort to block the streets surrounding the Pavilion. Monday‘s a different story. By 11am, both State and Adams Streets are blocked. Downtown Chicago is taking the flyers as fast as they’re being passed out. Many of them are surprisingly in agreement with ADAPT’s call for 25% of the current Medicaid money to be redirected to in-home services. One businessman engages Bob Kafka in a long and intense discussion over the merits of attendant services. He has buddies who were in Viemam, he says, and want the same thing Kafka does. He gives Kafka his card. Many other people are giving ADAPT members their cards, too; they are interested in the issue. Nobody, they say, has brought it up before. Certainly not the Chicago Tribune, which, instead of covering the baccalaureate brouhaha, runs a feature story on a college camp-out. “What I‘m looking for is a reasonable atmosphere to address the issues." Delilah Brummet Flaum, HHS’s Region V Director, would have to shout to make herself heard over downtown Chicago traffic and hundreds of milling demonstrators. And she‘s not shouting. She has come down, along with Chester Stroyny. Regional Director of the HealthCare Financing Administration and HCFA official David DuPre. in response to ADAPT demands. They want to meet with “officials”; they’ve blockaded the Region V HHS headquarters and aren‘t letting anyone in or out — unless they're willing to climb and crawl over protesters. About 20 activists have gotten all the way up to the HHS offices on the 15th floor, and have a bunch of police in there with them. It’s lunchtime by the time Flaum, Stroyny and DuPre are trotted out to Karen Tamley, Bob Kafka and Teresa Monroe and the others in the middle of Adams Street. ADAPT wants them to call Sullivan, to make him come back to Chicago and meet with them. Flaum can’t do that. “I am willing to do anything else you want us to do. to do try to get this resolved,” she’s saying. But she wants the group to be "more reasonable." She tells Tamley that she is “well aware" of ADAPT’s concerns, and that “the Bush Administration is working on non-institutional care options." Anna Stonum asks more questions. People in the crowd are starting to yell that they can’t hear. Flaum is telling Kafka that “shutting down a building“ is not the way to get a meeting with Sullivan. Kafka responds that they‘ve sent at least four letters to Sullivan and he's never responded to a single one. “You know as well as I do that the Secretary sets the tone for the discussion,“ Kafka lectures her. Kafka and DuPre engage in a debate about facts and figures. They can't trip Kafka up; he seems to know as much if not more about the issue than these folks do. At times the officials even seem to agree with him. Not, however, when he charges that “nothing the Secretary has said or done" changes anything “because he's in the pocket of the nursing home industry." “We disagree with that," say all three officials simultaneously. “We do favor the de-institutionalization model." “The damn Secretary has not said one thing — ever - has not even said the word ‘attendant services’ publicly," Kafka yells, and swears that ADAPT will continue to hold the building. “This is not being positive," says Flaum. “These are peoples' lives you’re talking about.” Kafka retorts. Photo Inset: The head of Bob Kafka, looking very intense, below the words "The damn Secretary has never even said the word 'attendant services' publicly." Article continues: “You don’t know what it’s like,” Monroe shouts at the officials when Kafka's done. “I want to talk to Sullivan. You get him here. He has no idea. Don't tell me Sullivan knows.” Monroe’s point, which she makes to Flaum, is that the money should go directly to the disabled person “because no person knows better what they need than the disabled person. Let us have our dignity.” She argues with Stroyny over nursing home inspections. Mark Johnson accuses Sullivan of “being in the pocket of the nursing homes.“ And meetings like this, he charges, aren’t worth a thing “unless there’s a commitment." The group, hearing Johnson, takes the cue: “We want a commitment!" One of the workers in the HHS office has come out for lunch and now finds she cannot get back in over the demonstrators. Still, she thinks what they're doing is “positive.” She’s a volunteer in a nursing home herself, she says, “And I know they’re the pits. People who don't frequent them don't know. These people who are walking around here” — she gestures to lunch-hour Chicagoans moving up and down the street-- “they could become victims of nursing homes, too. I look at these people here" —— and now she means ADAPT — “and I know I wouldn’t want to be jailed up in a nursing home." But then, she believes in protesting, she says. “I think protests are fine. I'm in tune with them. I was with Martin Luther King back in the 60s." she says. “I was in jail with Dr. King. I was 14 years old. That was just what you did; you went to jail. Some of our young people don't understand. “This is how to explain it,” she continues, warming to her subject. “These people want to get heard. We couldn’t get heard in Birmingham, either. That‘s why we marched on Washington." She won’t identify herself, though, but will only say she’s a spectator. But she works upstairs in the HHS office, she says. “And they got time to listen to that TV stuff — people come in talking about that, they make a big deal about the stuff they see on TV. And they got these people out here and they don‘t want to pay attention. When I was upstairs, they were callin’ ‘em ‘beasts’ and “vultures.” It is a measure of the erosion of belief in the system that has become the trademark of ADAPT that, when an EMS ambulance pulls up to the door and the word goes out that police are bringing down a man who’s had a heart attack, the thought passes among the group that this is yet another ploy. They think the stretcher rolled into the lobby and up on the elevator may be a ruse to make them move away from the door, which they nonetheless do, not wanting it to be said that they cared not for another disabled person who might be in danger. And when the man is brought down on the stretcher, there is more speculation: wasn’t he one of the officials out here earlier? Did the confrontation and excitement give him a heart attack? Is he faking? Is it really a medical emergency, or just :1 move to get someone out of the building who has an important meeting to attend and doesn't want it stopped by cripples? No one remembers the man in the stretcher more than a few minutes after the ambulance pulls away, lights rotating, into the Chicago traffic. Jane Garza from El Hogar del Nino is with the protesters. blocking a door by leaning against it. She’s part of the protest. she says: disabled herself, though she knows she doesn’t look it. She works in early childhood education. Some of the signs protesters are carrying were made by the children at her center, she says. “It's a way to bring them into it," she points out. The parents of the disabled kids at the center “are all reasonable people,” she says. “So they understand my being at an activity like this." If she gets arrested, she says, she has an understanding with her agency: they will bail her out. She’s been arrested with ADAPT before. she says; that was in Montreal. She’s been with ADAPT protests in Washington — the one to get the ADA passed; and one in St. Louis. “No one wants to see their child in a nursing home. People can really relate to that." She says the group at her door has been talking to passersby all day about the issue. “I was on the verge of going into a nursing home myself, back in ’82.” says this woman who doesn’t look disabled. When she had her aneurism and was in rehabilitation, she says, the Illinois Department of Rehabilitation Services gave her money with which she was able to pay two people — one for the morning, and one for the evening. “I just needed help getting up and then getting to bed. I was so weak. I just needed minimal assistance, somebody there to help me get dressed. But without that program. they would have put me in a nursing home.” Illinois Gov. Jim Edgar’s budget cuts have forced the Department of Rehabilitation Services to extend a freeze on intakes in that program through the end of 1993. and Edgar, Chicago ADAPT charges, is trying to eliminate a yearly cost-of-living adjustment for attendants. "After I got stronger, I was able to manage on my own. But look at how many people are in my shoes!” she says. “I worked; I had money. I was a social worker back then: one who had to apply for public aid just so I could get assistance." Insert picture: A person (possibly Lonnie Smith) with his head to one side and below the words “We want them to see what it’s like for us.” Article continues... The philosophy and tactic of doorblocking: Let people go in and out, if they’re willing to climb over you and your chair to do it. Arrest is not the objective here; inconveniencing people is. “We want them to see what it's like for us.” says one who has engaged in many door blockings. Photo by Tom Olin: A policeman stands in the middle of the street legs braced in a wide stance and arms streched out. He is holding a man with a cane (Gary Bosworth) with one hand and with the other hand and foot trying to hold back a man (Bob Kafka) in a manual wheelchair who is bent forward pushing. Other police officers are standing in the street, a supervisor is watching, as is a TV cameraman. Other protesters are partially visible at the edges of the scene. Chicago police have a black and white checkered band around their hats that is very distinctive. Article continues- Tuesday morning's Chicago Tribune, instead of covering ADAPT's HHS confrontation. reports on stepped-up security measures at the downtown State of Illinois building where. the Tribune reports, in error, ADAPT was "supposed" to be demonstrating Monday. ADAPT, it says, changed its mind. In fact, ADAPT planned to hit state offices on Wednesday. Speculation abounds as to who fed the paper the false information, the effect of which is to make ADAPT look disorganized. It later becomes apparent that state officials have had a hand in it. There is nothing in the Tribune about the people who stopped along State Street and asked questions, about Flaum, about any of it. The Sun-Times carries a photo inside. At the comer of State and Grant, a baby-blue police wrecker, the same blue as the cars, as the barricades, has blocked a curb ramp. ADAPT has blocked four intersections adjacent to the American Medical Association. Wheelchairs are stretched across 16 streets. At the intersection of Wabash and Grand, in the back, Paulette Patterson is hassling the policemen, mouthing off and chasing them with her motorized chair. It seems she is trying to get arrested. The police are being friendly enough. It won't be until noon that things will get rough. The cops will barricade the main entrances to the glass-walled fortress: many ADAPT members will take that as their cue to launch themselves out of their wheelchairs onto the high-curbed stoop around the building, crawling up to bang and hammer on the wooden barricades. A few find satisfaction in pounding on the glass walls. This will happen, though, only after the confrontation — the confrontation that resulted in Jerry Eubanks of Chicago being dropped from his wheelchair: picked up by his neck, it seems to other protesters, who holler for an “Ambulance! Now!”; the confrontation that causes Patterson to roll from her wheelchair and shriek at the top of her lungs, kicking her legs wildly as police try to pick her up. The police back off; when they come at her again, her screams again drive them back. Finally, Patterson is left alone, and, once more in her wheelchair, rolls off to the side, where she admits slyly and with her trademark smile that she enjoys discomfiting police. “They don't wanna mess with me," she says proudly. Suddenly they are all there again, surging at the entrance, trying to get up the high curb. Stephanie Thomas and Diane Coleman and others are wedging themselves in next to the Chicago Transit Authority paratransit vehicles that are a sure sign of arrests: it's the only way police can haul off a wheelchair to the hoosegow. Allen Leegant is diving under a barricade trying to get up to the entrance. Chris Hronis and Arthur Campbell are trying to follow; they are caught by police. Campbell is carried, spread-eagle, by four cops, directly to a CT A van. Cameras are everywhere; TV crews have materialized out of nowhere. Campbell has been arrested. Mike Auberger has been arrested. Campbell and Auberger are each put into his own van. The police have their eye on Mike Ervin. When you catch a snatch of cop-to-cop talk, you learn they're trying to pick off those they figure to be the leaders. “What the cops never understand is why the demonstration continues after they’ve hauled off the folks they think are leaders," says someone who is blocking a street. “They can’t figure out that arresting leaders doesn’t work; that as soon as they arrest someone, somebody else just moves in." Susan Nussbaum, blocking a side door, answers questions about whether the movement will ever see violence. “There’s always the potential for violence," she is saying. “But it would be good if that could be understood in the context of a larger issue. “I am not in favor of getting my head beaten in." At 3:15 the building starts to empty out. ADAPT has managed to block all the exits, so AMA workers and officials alike are subjected to a gauntlet of taunts as they trot, under tight police protection, down the ramp to the alley and across to the parking garage. The taunts seem mostly to be of the “AMA Shame On You” variety. When ADAPT members arrived at AMA headquarters in the morning, they found tables set up with water coolers and cups of refreshing water awaiting them. Later, the AMA‘s Department of Geriatric Health would confirm for a reporter that the AMA had done this so the disabled people wouldn't get overheated and get sick. Many protesters were wary of the water. Some suspected it had been spiked with Valium: others thought it a ploy to get them to have to pee later on, adding to their discomfort and hopefully ending the demonstration early. Much of the water was left untouched. Water was also running through hoses into the sprinkling system of the AMA‘s lawns. This had the added effect of keeping protesters off the grassy knolls fronting the building. Shortly after ADAPT arrived, one demonstrator had parked his chair on the hose while others moved across the area to block doors. Later, the water was simply turned off. Insert picture: A head and shoulders picture of a protester chanting, with the words "AMA: Shame on you!" "People are dying shame on you!" Article continues- The AMA’s flak, Arnold Collins, was standing around with the TV and radio reporters most of the day. The AMA had issued a statement insisting it “supports the home care objectives of ADAPT." Dr. Joanne Schwartzberg, Director of the AMA's Department of Geriatric Health, said in the news release that a meeting the previous Thursday with ADAPT had been “productive” and that the two `groups` had “considerable common ground.” Campbell, who attended the meeting, had a different analysis. He said he believed Schwartzberg truly had no understanding what ADAPT wanted; that some of their ideas had been totally inconceivable to her. Schwartzberg said ADAPT was the first group she had ever met with and felt “hostility.” “It was a great shock," she said. “I always thought of myself as being a great advocate. But I wasn’t an advocate enough for them." Schwartzberg said that ADAPT didn’t understand that there were “really frail people in nursing homes — a kind of frailty that these disabled don’t have. “I was really scared that the demonstrators might get harmed, the way they throw themselves out of their chairs.” she went on. “They’re very courageous; I think they're a little reckless. Luckily, nobody’s gotten seriously hurt." “Do you think she really believes the things she says, or do you think it’s just a pose?” a filmmaker wondered. The AMA had issued “a guideline for medical management of homecare patients," she said, and they were putting on 8 seminars for doctors “in managing home care.” She knew ADAPT wanted AMA members to divest themselves of their financial interest in nursing homes and cut nursing home admissions. But the AMA couldn‘t do that, she explained patiently. “We are a voluntary body. not a regulatory body." “They couldn't understand why we couldn‘t do more." she said. The Chicago Tribune was still concerned about the State of lllinois building. Every day Tribune stories had chronicled the increasing security at the site. On Tuesday, Paulette Patterson and another disabled woman filed suit in U.S. District Court alleging denial of access due to increased security. Though a temporary restraining order was not granted, Patterson’s attorney, Matthew Cohen, said filing the suit had had the desired effect. The Tribune covered the suit. Photos by Tom Olin: 1) Two protesters (Spitfire and Jimmi Schrode) in the march raise the power fist to woman leaning out of a second floor window yelling and giving them the thumbs up. Below on the sidewalk most people are just walking by but one older man looks on. Spitfire is wearing her combat helmet. 2) A line of ADAPT protesters face a set of barricades on the other side of which are a line of policemen holding the barricades with both hands. Midway down the line of protesters, a man in a wheelchair (Danny Saenz) is turned toward the camera and another protester (Chris Hronis). 3) Close up of a man in a wheelchair (Rene Luna) who sits in front of an almost life sized portrait of IL Governor Edgar. Rene is holding a poster that reads "nursing home industry owns Edgar." Article continues- Finally, on Wednesday, ADAPT obliged the Tribune and state officials by staging a protest at the building, drawing attention to stale policies that were cutting people off from attendant services in Illinois. On Thursday. the Tribune ran a long story on ADAPT. Calling them "a group of vociferous activists savvy in street action." It quoted a miffed Chicago official who refused to be named saying that "one of the strongest points in their civil disobedience is making themselves look as pathetic as possible.“ “The group's history is rife with attention-grabbing acts of protest." said the Tribune. which compared them to ACT-UP and Earth First! protest `groups`. "Though some may question their tactics. none can doubt they have impact.“ said the Tribune. the end
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."
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[This article is a continuation of ADAPT 707 and the entire part of the article we have is included there for easier reading.]
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Chicago Defender, Monday, May I I, 1992 Title: Sullivan speaks, get heckled at UIC by Dobie Holland Screaming slogans such as “You're killing us," a group of physically-disabled persons disrupted the commencement speech of Health and Human Services (HHS) Secretary Dr. Louis W. Sullivan Sunday at the University of Illinois-Chicago. Security personnel removed the partially wheelchair-bound group from the UIC Pavilion and escorted them outside, where they joined 500 other protesters from 25 states who picketed outside during the ceremonies. John Gladstone, a Americans Disabled for Attendant Programs Today (ADAPT) member from Philadelphia, explained the group's militant tactics: “These are radical times. You can only write so many letters. l wrote so many letters to Mr. Sullivan that I had writer's cramp." ADAPT, a national Civil Rights agency, is concerned with Bush Administration policies that have resulted in widespread budget cuts in state Medicaid funding. The reductions, ADAPT members say, will force disabled people to live in nursing homes. The group is calling for 25 percent of Medicaid funds to be ear-marked for community-based nursing centers, which will enable many disabled citizens to live independently from nursing homes. “They're warehousing us (in nursing homes)," Gladstone said. “I've lived in nursing homes for 14 years and I have seen some of the brutality that goes on there." Gladstone said nursing homes are guilty of inhumane treatment and neglect of patients who are unable to defend themselves. The environment in nursing homes, Gladstone added, is not conducive to leading a normal adult lifestyle. "When you live in these nursing home facilities, they take your life away. When I first went into a nursing home, I was in a walker but they wouldn't let me walk and they put me in a wheelchair — now I can't walk," he said. Sullivan, who was under tight security, was not available for comment after the ceremonies. The HHS secretary delivered his address despite the nterruptions and emphasized a need for sensitivity and caring toward all humans.