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Hem / Album / Tagg wheelchair user 2
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 (148)
Name of newspaper illegible Los Angeles Times? November 19,1984 Handicapped Stage Protests to Publicize Transportation Needs by Miles Harvey, Times Staff Writer PHOTO: Mary Frampton / Los Angeles Times A tidy looking woman in pants and a vest, with a slight smile on her face, sits in a manual wheelchair on a bus. She is sitting in the accessible doorway, the access symbol visible on the side of the doorway. Below and beneath her is a metal panel, like the barrier on some lifts that keeps the person from rolling off the front of the lift. Caption reads: Barbara Trigg rides a hydraulic lift onto a Los Angeles bus. Article reads: Washington -- It was a scene reminiscent of the 1960s civil rights demonstrations as angry protesters chanted slogans, picketed the White House and stopped traffic before they were finally dragged away by police. And the series of confrontations that ended with 27 arrests last month seemed to come down to a similar central issue— the right to sit on a bus, to have full access to public transportation. There was one striking difference, however. Unlike Rosa Parks and the black civil rights activist who battered down the Jim Crow barriers in the South, these protesters were in wheelchairs, and their goal was equal access for the physically handicapped. “It's a civil right to be able to ride public transportation," said Julia Haraksin, a wheelchair-bound Los Angeles resident who participated in the demonstrations. “In the ‘60s, the blacks had to ride in the back—and we can't even get on the buses." New, Radical Tactics Organizations representing handicapped persons long have urged Washington to require that new buses and rail systems built with funds from the Department of Transportation's Urban Mass Transportation Administration be equipped to accommodate handicapped riders. But Haraksin and other handicapped individuals like her now are beginning to press the old arguments with new, more radical tactics. Frustrated by years of negotiating, lobbying in Washington, going through the courts and staging non-confrontational protests, some members of the handicapped community now are resorting more actively to confrontations and civil disobedience. Thus, early in October, 100 members of a newly formed coalition called American Disabled for Accessible Public Transit confronted a national meeting of city transportation heads here, using the kind of civil disobedience tactics used 30 years earlier by Dr. Martin Luther King Jr. Protesters were arrested when they blocked entrances and buses of those attending the American Public Transit Assn. convention. The strategy was to physically be a barrier because handicapped people have to face barriers all their lives," Wade Blank, a founder of Denver-based ADAPT said. Calling the protests here " Selma," leaders of ADAPT claimed victory and promised that their struggle has only begun. They already are focusing their efforts on what they hope will be a larger demonstration at the next meeting of the American Public Transportation Assn. a year from now in Los Angeles. But they and their cause may be in for a tough battle. Their opposition comes from the Reagan Administration, from many city governments and even from within the handicapped community. And as public attention focuses on the underlying budget choices involved, the opposition may swell with the addition of taxpayers concerned about the possible costs of a national full-access program. ADAPT argues that a legal right to full access for the handicapped already exists. Federal law states that Urban Mass Transportation Administration funds — which account for about 80% of the costs of new and replacement equipment in most municipal transportation systems—cannot be spent on programs that discriminate against, or exclude, the handicapped. The law does not make clear, however, whether handicapped persons must be provided with access to regular bus lines or whether they can instead be provided with alternative transportation systems. Nor does it indicate who should make that decision. Cities Make Decisions Current Transportation Department policy, which is strongly supported by the American Public Transportation Assn., allows each city to make its own decision on what type of transportation it will provide for the handicapped. This is in sharp contrast with Carter Administration policy, which in 1979 interpreted federal regulation to mean full access. Members of ADAPT, opposing the separate-but-equal philosophy of paratransit argue that it does not meet the needs of the handicapped and that it is inherently discriminatory. "It segregates the disabled people from the able-bodied community," Mike Auberger, an organizer for ADAPT, said. Because paratrasit requires advanced scheduling [unreadable] a ride is needed, he said, “you have to schedule your life according to the system. No one else has to do that. That shows the inequality right there." He and other members of ADAPT contend that because of long waiting lists for paratransit, some cities refuse to offer the service to new users - thus cutting off thousands of handicapped persons from any public transportation. Transit authorities, on the other hand, argue that full access can be too expensive, given the low percentage of handicapped riders in many cities. Lift-fitted buses cost an estimated $8,000 to $10,000 more than regular buses. Furthermore, lift systems are often unreliable and time-consuming to operate and maintain, transit administrators say. In Denver, for example, the transportation district has spent $63 million to purchase or retrofit buses with lifts. 80% of which was paid for by the federal government, according to spokesman Gene Towne. Since it started mainline access in 1982, the district has spent close to $1 million in maintenance of the lifts and expects to spend an additional $900,000 this year. Yet of the district's total annual ridership of 38 million, only 12,000 use the lifts, according to Towne. ADAPT counters that the issue is not cost but civil liberties. “In America we have a way of hiding, our prejudices with pragmatism," said Blank, a Presbyterian minister and veteran of the civil rights and anti-war movements of the 1960s who now supports handicapped activists. Variety of Approaches Across the country, cities are using a variety of approaches to the problems of providing mass transit for the handicapped. In Los Angeles, mainline access is required by state law. Although 1,850 of the Southern California Rapid Transit District‘s 2,400 buses are fitted with wheelchair lifts some local advocates charge that the RTD gives only "lip service" to access, complaining of broken lifts, drivers who do not know how to use the equipment or refuse to do so and an overall lack of commitment to providing access. The system provides only about 1,400 rides a month according to the RTD. Handicapped activists charge that the low ridership is attributable to the system's poor management. There were and are people in the operation department (of the RTD) back there who were and are opposed to the idea of access from day one," Dennis Cannon, a Washington-based expert who helped to plan the RTD's access program in the 1970s said. But in the last six months, the RTD has made "a major effort" to overcome the problem, according to RTD General Manager John A. Dyer. The system boosted its fiscal year 1985 budget for handicapped service by $3 million, to $4.9 million, to provide for a program to educate drivers and upgrade the quality of equipment and service. In Oakland, half the city's 800 buses are lift-equipped and all of the Alameda — Contra Costa Transit District's new buses will be lift-equipped. Seattle’s Services In Seattle, 570 of 1,100 buses are accessible to the handicapped, providing about 5,900 rides a month. The Municipality of Metropolitan Seattle also contracts with private groups to supply paratransit bus and half-fare cab service, providing a total of 8,400 rides a month in Denver. 432 of the city's 744 buses are lift- or ramp-equipped, providing more than 1,000 rides per month. The city also uses 13 vans and small buses in a paratransit system that provides 3,200 rides a month. In New York City, where an estimated 35% of all the transit passengers in the country use Metropolitan Transportation Authority vehicles each day. half of the city's 4,333 buses are fitted with lifts. The city has no figures on how many handicapped riders use the system, but one official calls the number minuscule. A new state law calls for $40 million over the next eight years to retrofit “in the neighborhood of 30" subway stops for handicapped use, according to a transit authority official. In addition the law will increase the percentage of lift-equipped buses to 65% of the fleet, as well as provide a paratransit system in the city by 1988. Minneapolis-St. Paul uses 45 paratransit buses and contracts with private cab companies to carry handicapped persons in all, the city provides 40.000 trips a month. None of Chicago's 2.400 regular buses are fitted with lifts. Instead the city provides 42 paratransit buses, which offer 12,000 rides a month. Additionally, 14 of the city's subway stops have been retrofitted for handicapped access and 300 of Chicago's 1,100 subway cars are accessible. If there is a diversity of approaches to the problem, there is also a diversity of views on the militant new tactics used by ADAPT and its supporters. The views of the handicapped people are all over the lot on what type of transport they'd like," Bob Batchelder, counsel for the APTA, said. But transit specialist Cannon, himself a wheelchair user, counters: “I'm talking to disabled people who wouldn't do what ADAPT does ... but who support what they are doing and think it needs being done." Whether ADAPT's controversial style will work remains an open question. While no negotiations are scheduled, ADAPT leaders vow to continue to harass association meetings. But in Los Angeles, the RTD's Dyer indicated that he hopes demonstrations will be replaced at next year's convention with “serious dialogue and discussion of the issues." "It’s a new thing for the disabled to see themselves with power," ADAPT's Auberger said, "but it's also a new experience for the powers that be."