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Sākums / Albūmi / Chicago, Spring 1992 51
- ADAPT (713)
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 (714)
Chicago Defender, Vol. LXXXVII [87] No. 7 Wednesday May 13, 1992 (40¢ outside Chicago and suburbs) Editorial Listen to disabled on in-home funds A group of "disabled rights activists, who on Tuesday continued their protest against the federal government's failure to allocate more funds for handicapped individuals, should be taken seriously. They are protesting for the right to remain at home, rather than being warehoused in nursing homes. “Six times the (amount of) money goes to nursing homes and other institutions,” compared to the sums going “to community-based services. We want 25 percent of that nursing home budget to go to home care,” said Diane Coleman, an organizer for the group. There are various reasons why authorities should lend an ear to the protesters’ demands. Some of them are: * Disabled people would rather live at home than in an institutionalized environment, just like anyone else would. Many physically challenged individuals are wheelchair-bound but would have no trouble at home turning on a computer and working on it; going to the refrigerator to get their own food; operating their own TV, radio, or CD player; reading books, teaching younger members of the family, making their own bed and doing countless other constructive things to make them feel useful and relatively independent. * Additional money for home-based and community-based assistance would permit thousands of disabled individuals to receive help from part-time home attendants or nurses. The tab to the taxpayers might, in many instances, be smaller than the current cost for such services. * Many disabled protesters argue that being housed in a nursing home may actually prohibit some physically challenged people from developing into more productive citizens. These pundits stress that some of the disabled individuals being cared for in nursing homes could, if given home-based fund support, live a life with more quality to it and a few of them could even participate in home-based employment or other legal business. The bottom line is that disabled individuals deserve to be treated with as much respect as any other group in society. Other protesters have been given serious consideration by the federal government on various causes. The current cause espoused by many of America’s physically challenged individuals deserves equal attention from government authorities. - ADAPT (715)
[Headline] Local activist fights for independence in Chicago Desert Sentinel By Gary Bosworth Special to the Sentinel It is not normal Mothers Day present from a very unusual person. Susan Cote travelled to Chicago for Mothers Day, not to be with her mother, but instead to fight for the right of all mothers to live independently in their own homes instead of being forced to give up their independence in nursing homes. Cote has had cerebral palsy since birth, which has caused her need the assistance of wheelchair. She is joining about 250 other people from around the country. The will be all converging on Chicago in their wheelchairs to lobby for re-directing 25% of the existing nursing home federal dollars into attendant services so people are not forced to live in nursing homes against their will. American Disabled for Attendant Programs Today (ADAPT) has chosen Mothers Day for this intensive lobbying effort because over two-thirds of the people in nursing homes are somebody's mother. What better way to express gratitude to mothers everywhere, than show solidarity with the dreams of living independent lives. Cote, a mother of two teenagers herself, expresses it by saying, "It is important for people to understand that people do not end up in nursing homes because of the disabilities they develop. All persons with disabilities, no matter what their age are entitled to the right to be given the opportunity to live independent, productive lives in the community by being allowed to continue to live in their own homes." Over $20 billion dollars a year are spent by the federal government to subsidy nursing homes at an average cost of well over $30,000 per person each year. An equivalent amount of attendant services cost from $4,000 to $8,000 a year--a mere fraction of the nursing home cost. Cote, who eight years ago, worked herself as a Certified Nurse's Aide in a nursing home facility sees it as a simple choice for the government to make. "Why spend four times the money on something people don't need, don't want, and limits their own freedom. - ADAPT (716)
Chicago Tribune Tribune photo by Carl Wagne: A march of ADAPT through the streets of Chicago. In front, left to right: a man in a red Chicago ADAPT "ADAPT or Perish T-shirt with a picture of man evolving from monkey to ape to man to wheelchair user, a man with no legs (Jerry Eubanks) in a manual chair chanting and holding a poster that reads "Free Our People" and being pushed by a man (Mark Pasquesi), a woman (Paulette Patterson) holds a bullhorn in front of her face, a man in a fishing hat (Bob Kafka) and yellow ADAPT shirt with a sign that reads "Attendant Services NOW!!". Behind the first man is a nab with a head pointer being pushed by a man (Tim Wheat) in a purple ADAPT shirt. Behind Paulette is a man in a suit in a wheelchair and beside him another man (possibly Michael Champion) and behind them a woman (Cassie James) in a power chair, and beside her a woman in a red shirt. As the line goes back it becomes less clear to distinguish people. Title: Disabled protest funds allocation Members of a disabled rights group begin a march from the Bismark Hotel to the regional offices of the Department of Health and Human Services at 105 W. Adams St. Monday to attempt to talk with representatives. The demonstrators, from the group American Disabled for Accessible Public Transit [sic](ADAPT), were protesting to have more money allocated for home care, rather than nursing home care. ADAPT wants the govemment to institute a policy to fund community-based attendant service allowing disabled people to stay home. - ADAPT (717)
Chicago Tribune, Thursday May 14, 1992 [This article continues in ADAPT 712 but the entire text has been included here for easier reading.] Photo by Eduardo Contreras: A man (Randy Horton) in a denim jacket kneels on the bottom step of an escalator with his arms spread from one handrail to the other. Someone stands on the escalator facing him. Behind him are a group of other protesters in wheelchairs filling the area. The group includes: Steve Verriden, San Antonio Funtes, Chris Hronis and others. Caption reads: Randy Horton (on knees) blocks John Meagher on a State of Illinois Center escalator. Title: Disabled protesters take hard line by Christine Hawes and Rob Kawath Rolling his wheelchair around the cavernous State of Illinois Center, shouting for his rights, Ken Heard recalled how he used to spend his days in a Syracuse, N.Y., nursing home where doctors controlled his life. They would tell him when he could get up in the morning, when he could go to sleep, what he could eat. They would feed him pills, but they wouldn’t tell him what they were for. It was as if he had no mind of his own. “l saw people tied down in their beds, said Heard, who has severe cerebral palsy. "And I saw people die in there." It took some time, a marriage that got him out of the nursing home and a raging desire for independence, but today Heard has regained the power to think for himself. He now earns his own income, rents and fumishes his own apartment and even takes vacations in Las Vegas. His joumey to self-sufficiency began when he heard about an activist group now called American Disabled for Attendant Programs Today. On Wednesday, about 200 ADAPT protesters in wheelchairs disrupted operations at the State of Illinois Center, 100 W. Randolph St., blocking exits and occasionally fighting with building patrons and workers as police stood by, arresting no one. Elaborate security measures the state had put in place Monday to keep the 16-floor, 3,000-employee building functioning broke down while state and Chicago police squabbled over who was responsible for arresting protesters deemed to have gone too far. But the scene of disabled men and women dragging themselves up escalators, surging into the building lobby and clutching the legs of people trying to walk past is just another picture in the well-publicized story of a group of vociferous activists savvy in street action. “One of the strongest points of their civil disobedience is making themselves look as pathetic as possible,” said one Chicago-area official at an agency that has been a target of ADAPT. The official, who asked that his name be withheld, said, “They are excellent media users, and they are very successful at putting spotlights on issues that most people probably wouldn’t normally pay attention to.” ADAPT has taken its dedication to a fever pitch, too fevered for some, and like many new protest `groups`—including the AIDS Coalition To Unleash Power (ACT -UP) for gay rights, People for the Ethical Treatment of Animals (PETA) for animal rights and Earth First for the ecology—is using dramatic, sensational tactics for their cause, to allow any nursing home residents the ability to live on their own. And though some may question their efforts, none can doubt they have impact. One woman who said she was grabbed, tripped and bitten during Wednesday’s melee confessed a few hours later, “I can’t help but feel guilty.” During Heard’s 10-year stay in the nursing home, he met some ADAPT members from Denver and listened to them tell of how they took sledgehammers to Denver's street curbs as a way of objecting to inaccessible sidewalks. Now Heard is a political organizer for ADAPT, in town with 350 other protesters. And though members are no longer taking sledgehammers to cement, they are steering wheelchairs into intersections, chaining themselves to buildings and crawling along dirty streets to get over curbs too high for wheelchairs. For the past two years, ADAPT has been staging demonstrations every six months in support of reallocating one-fourth of the country’s Medicaid funds that now go to nursing homes to in-home health care, and to make it easier for disabled people like Heard to escape their “prisons.” This week in Chicago, protests have played out at the quarters of everyone ADAPT perceives as the health-care power brokers: the federal Department of Health and Human Services, the American Medical Association and the offices of Gov. Jim Edgar. ADAPT claims that having personal, in-home attendants for the disabled costs $900 a month less in state funds than keeping them in nursing homes and other institutions. Illinois officials say the difference is only $600. But aside from financial concerns, ADAPT members say they’re fighting against inhumane restraint and abuse in nursing homes. Their strategy is to make the able-bodied feel as uncomfortable and limited as they themselves do—and to grab as much media time as possible. Television cameras were there Wednesday when bands of wheelchair users mobbed workers trying to use an escalator in the State of Illinois Center. And they were there Tuesday when protesters crawled out of their wheelchairs, across Grand Avenue and over foot-high curbs outside of the American Medical Association’s national headquarters. “This makes us visible," said Jean Stewart, a 42-year-old novelist from New York, who has used a wheelchair since she lost her hip muscle because of a tumor about 17 years ago. “And it enables us to get our message across. It’s not a publicity stunt, it’s education.” The group’s history is rife with attention-grabbing acts of protest after talks with officials were unsuccessful and full of what they feel is noteworthy success. The end result of the Denver protests, said Wade Blank, a founding member of the group, was one of the most accessible cities for disabled people in this country. Three years ago, a handful of ADAPT members were arrested for blocking a Chicago Transit Authority bus with their motorized wheelchairs. But two results of those efforts, they feel, were CTA purchase of buses with wheelchair lifts and even the passage of the federal Americans with Disabilities Act. ADAPT members say they are disrupting business as usual because they are shut out of offices where politicians and association presidents could be sitting down to discuss the issue. And they are trapping members of the public to demonstrate how they feel trapped and restrained. “For so long the issues surrounding disability have remained invisible,” said Stephanie Thomas, who lost her ability to walk when she was run over by a tractor 17 years ago. “So we have to do some extraordinary things to make people pay attention.” Wednesday’s protest, which came after U.S. District Judge Milton Shadur refused to order a lessening of security measures at the state’s Chicago headquarters, left police and Department of Central Management Services security officers snapping only at each other, even after the protest turned ugly. “I have to get to an appointment!" yelled one middle-age man as he wrestled on the ground with two protesters who had grabbed his legs and, in the process, had been pulled out of their wheelchairs. “This is what it feels like to be trapped in a nursing home!” yelled one protester. The man finally struggled free and hustled out of the building while Chicago and Central Management Services police watched from only a few feet away. “We’re sorely disappointed with the Chicago Police Department,” said Central Management Services Director Stephen Schnorf. “Certainly they provided better protection to the other buildings where there were protests this week.” But Chicago Police Cmdr. Michael Malone said the state was in control and his officers were just there to back them up. He said the state was misrepresenting the agreement between the two departments. And all that consternation was caused by a group that claims to be loosely organized and barely funded ADAPT, which has about 5,000 members nationwide, has very little formal correspondence, aside from a newspaper called Incitement and a rare memo, Blank said members keep in touch through word of mouth more than anything, and most of them support their travels through small fundraisers. But though the group says most of its day-to-day procedures are hardly sophisticated, ADAPT leaders are extremely skilled in using the media, say some who have watched the group’s protests first-hand. Sonya Snyder, public relations director at a Florida hotel where ADAPT demonstrated against the American Health Care Association last October, said the protesters only became rambunctious when television cameras appeared. “For most of the time, the police and the protesters would share sandwiches,” Snyder said. “But when the media came, down went the sandwiches and up went the protest.” And Janice Wolfe, a spokeswoman for the health care association, said the group’s efforts are “frustrating and misdirected. Their efforts could be better spent on individuals who are in power to do something.” ADAPT members view their protests as grand displays of strength, not pitiful appeals. They speak of their demonstration plans as though they are plotting battle strategy, using words like “identified enemy,” “privileged information” and "top secret." They pattern their protests after the civil rights demonstrations of the 1960s and compare themselves to the black leaders of that era “This is just like Martin Luther King,” ADAPT member Bernard Baker from Atlanta “We’re fired up, and we can’t take it anymore." - ADAPT (718)
Chicago Defender, Tuesday May 12, 1992 Sengstacke Newspaper vol. LXXXVII- No.6 35 cents, 40 cents outside Chicago and suburbs Title: Disabled group blockades street by Dobie Holland Likening the plight of the disabled to that of the Civil Rights movement, Americans Disabled for Attendant Programs Today (ADAPT) staged a blockade of downtown streets Monday in an effort to gain an audience with Health and Human Services Director Dr. Louis W. Sullivan. Sullivan, however, refused to meet with the group and 10 ADAPT members were arrested on criminal trespassing charges according to HHS and police officials. “Our ghettos are the nursing homes and facilities for the mentally retarded. Society doesn't want to recognize us. They want to put us in these ghettos," said ADAPT coordinator Bob Kafka of Austin, Texas. Hundreds of ADAPT members rolled their wheelchairs and formed a human chain in the middle of Clark and Adams streets and swamed HHS’ regional offices to demand a meeting with Sullivan. The group wants 25 percent of Medicaid funds channeled to community-based nursing centers, which would permit many disabled citizens to live at home, ADAPT representatives said. "The American Disabilities Act is very similar to the Civil Rights Act of 1964," Kafka said. “Very few people want to talk about the discrimination against the disabled. "They don't want to consider us as people and they just want to put us all in nursing homes,” Kafka continued. “Most people think a nursing home is a nice place for little old ladies...well, it's not.” Kafka, who is wheelchair-bound, said he has never been in an institution but recent political policies of the Bush Administration are making it possible. Title: ADAPT blocks street The American Health Care Association, a formidable nursing lobby, and the American Medical Association are also responsible, Kafka noted. Kafka said nursing homes have become big businesses and doctors have become owners of nursing homes, which motivated both `groups` to, support the institutionalization of the disabled. The group has been attempting to meet with Sullivan for more than two years, Kafka said. with all of their requests being rejected. A spokesperson for HHS told the group that Sullivan was contacted but said his schedule would not permit him to meet with them. On Sunday, a small band of disabled activists disrupted Sullivan's commencement address at the Univelsity of Illinois at Chicago, although the secretary did not acknowledge the ADAPT members. Guests to the gaduation day ceremonis filed past police barricades, while the activists, many in wheelchairs, circled outside the doors of the UIC Pavillion, chanting “We want Sullivan.” The demonstrators made same demands. urging the Bush Administration to redirect 25 percent of Medicaid funds currently budgeted for nursing homes and other institutions to set up community-based programs to allow the disabled to live on their own. An estimated 1.6 million disabled people now live in nursing homes. which Kafka said is a more expensive and less humane option than helping the disabled live independently. - 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. - 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 (721)
This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading. - ADAPT (722)
[This page continues the article from Image 746. Full text is available on 746 for easier reading.] - 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 (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 (726)
[This article continues the article from Image 746. Full text is available on 746 for easier reading.] - 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 (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.