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Нүүр хуудас / Цомог / Chicago, Spring 1992 51
- ADAPT (734)
Photo by Tom Olin?: A very large crowd of wheelchair users are lined up in rows facing out from in front of the glass headquarters of the American Medical Association. Tim Craven of Tenn. is in front leading a chant. In the group nearest the camera are Allen ___ in a purple shirt, beside him a woman and then Mike Evin and the possibly Tom Rafferty. - ADAPT (733)
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 (732)
Photo Tom Olin?: A view from on high of the line of the ADAPT march down a Chicago street. The line is mostly single file with a T at the front. On the sides a few walking people with ADAPT are helping and police are walking along the street side of the march. On the sidewalk a TV cameraman is filming. From the front of the march left to right you can see Jerry Eubanks being pushed by Bill Henning, Bob Kafka, and Paulette Patterson. Behind them is another row of three activist including Paulette Sanchez and one woman pushing a wheelchair with a small coffin in it. Behind them is another row of three Dorothy Ruffin, a small person behind the coffin and Debbie ______, behind them is someone in a white shirt and Sparky Metz, then George Roberts in a cap and behind him Janette Roberts is holding his chair, next to her San Antonio Fuentes, behind him is possibly Walter Hart and Bobby Thompson is a bit out of the line, then three people, then someone being pushed possibly by Bill Scarborough, then Danny Saenz, then Jennifer McPhail in a purple shirt behing pushed by Richard Zapata, someone is rolling beside them and Babs Johnson is walking beside them too. Behnd that group it gets more difficult to make out faces, but the line goes on out of the top of the picture. - ADAPT (731)
[This page continues the article from Image 747. Full text is available on 747 for easier reading.] - ADAPT (730)
Photo by Tom Olin?: A group of Chicago police men are huddled by the door of a car. There is a camera person in the foreground. They appear to be helping someone they are guarding in or out of the vehicle. - ADAPT (729)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (728)
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. - 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 (726)
[This article continues the article from Image 746. Full text is available on 746 for easier reading.] - 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 (724)
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. - ADAPT (722)
[This page continues the article from Image 746. Full text is available on 746 for easier reading.] - ADAPT (721)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (720)
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. - ADAPT (719)
Sun Times, May 11, 1992 Photo by Brian Jackson: A line of police hold a long metal barricade in front of them. On the other side a row of wheelchair demonstrators with ADAPT are lined up toes to the barricade. A man in a wheelchair (Mark Johnson) is in the forground looking sideways to the camera, beside him to his left is a small woman in a chair (Cassie James). Three people down another protester (Brian from Houston) faces the camera and is wearing numerous buttons. Another police officer stands behind Mark, with his hands on his hips. Caption: Able to protest Police keep demonstrators in wheelchairs from advancing Sunday alter a protest of Health and Human Services Secretary Louis W. Sullivan's commencement address at the University of illinois at Chicago. The disabled activists were protesting "warehousing" people with disabilities in nursing homes and other institutions. Russell Goode, a Louisville, Ky., member of American Disabled tor Attendant Programs Today, said, “What we really want is Sullivan to reallocate 25 percent oi the money they give lor nursing homes to us and Medicaid or attendant programs.“ The money would enable disabled people to hire attendants, he said.