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Akceptejo / Fotaroj / Etikedo nursing homes 34
Dato de aldonado
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Rocky Mountain News Sunday March 27, 1977 Disabled are limited by society's attitudes By Alan Cunningham PHOTO by John Gordon, News: A young man (Larry Ruiz) sits in a wheelchair in front of a building. The shot shows his whole body and wheelchair and is looking up at Larry's smiling face. (For those who knew Larry, it's a classic Larry smile.) Caption reads: Larry Ruiz is one of those leading better lives of the Atlantis community. Nobody seems to know exactly how many disabled Americans there are - or even how one should define them. In Colorado, the figures are even more sketchy than they are nationally. But one estimate, based on federal statistics, suggests there may be as many as 350,000 disabled citizens in this state. If true, that would mean that 14 percent of the population suffers from some disability. The same projection indicates that as many as 83,000 of these persons as unable to work, keep house or go to school. Gov. Dick Lamm sometimes uses a more conservative figure of 10 percent. But even if that is closer to the truth, it shows that the plight of the disabled is a major problem. It also offers a clue as to why the disabled seem sure to emerge soon as the country's newest civil rights lobby. The have the numbers to make themselves heard - and seen - if they can begin to speak out with a unified voice, demanding their fair share of the American Pie. Until now, they've suffered the fate of most minority groups: invisibility. This is ironic, since most are highly visible if anyone chooses to see them. But for many reasons - not the least a sense of guilt - the able-bodied tend to turn away from those with crutches, wheelchairs and seeing eye dogs. And those who plan public facilities and services often reflect this attitude. It is politically safe for them to ignore the needs of the disabled pretending such persons make up a tiny fraction of the population and thus don't deserve a major share of attention. A myth to be sure. But it is only one of several myths which the Atlantis community, a group home for handicapped persons, in a minority report to the upcoming White House Conference on Handicapped individuals, hopes to destroy. For instance, there is the idea that nursing homes are primarily heavens for the aged and the infirm. The opposite side of that assumption is set forth in the opening chapter of the Atlantis report. Few realize that our nation's institutions also house a great many disabled young persons, some in their early teens. THESE ARE THE victims of our society's response to children and young adults who have muscular dystrophy, cerebral palsy, birth defects, blindness, and neurological disorders, or have survived accidents of varying kinds. But they are there by the thousands, many simply because they were labeled by physicians and psychologists as "retarded" and unable to function normally. It is difficult to imagine a more stifling or inappropriate atmosphere for a young person. It is inhumane to shackle and imprison youthful energy and curiosity into the nursing home routine. Such repressive living leads to anger, hostility and finally to the withdrawal and waste of a battered ego. As the report goes on to explain, the Atlantis group has fought to get more than 30 young men and women out of nursing homes and institutions so as to demonstrate that they can reverse this pattern if given a chance. But, even as it begins to reverse, new problems emerge. Most have to do with obstacles which the world has placed in the way of the disabled person. Again, it has a lot do with society's tendency to act as if he doesn't exist. Funds for rehabilitation programs, both public and private, are so scarce that only a small fraction of the disabled ever benefit from them. A prime example of this comes from State Rehabilitation Director Glenn Crawford, who says his division has determined that 135,000 persons in Colorado are potentially eligible for its services. Yet, in 1976, the division served about 14,300 persons. The figure will inch its way up to 16,000 this year. Such private facilities as the widely acclaimed Craig Hospital also have finite resources. They apply guidelines to decide which applicants will be accepted and which won't. Needless to say, a lawyer whose only disability is the loss of his legs has a better chance than a 19-year-old with no schooling who has lain on his back for most of his life. Funds and facilities for handicapped scarce Those who don't get the help often wind up in the category that Wade Blank of Atlantis refers to as "the losers." He contends that those who work with the disabled have too quickly given up on this group of people consigning them to lives of hopelessness. And he further argues that the implications of this have narrowed opportunities not only for the severely disabled, but for many others with less serious problems. For even those who have escaped the awful label of the "loser" run into obstacles every day. The Atlantis report focuses on many of these obstacles. These are some of the observations: EDUCATION. Many disabled youngsters in the past have failed to get adequate schooling either because they were in institutions or because their families assumed they would never be able to lead normal lives as adults and consequently didn't need to be trained for careers. Even those who went to school often were sidelined into special programs for the handicapped. While academic standards were high in such programs, the students were poorly prepared either intellectually or emotionally, to get along in a world of able-bodied persons. The recommended solution, "mainstreaming"- that is, letting disabled youngsters and adults go to school in the same classroom with everyone else. MONEY. The complexities of the various welfare programs on the county, state and federal level often conspire to keep disabled persons in nursing homes. Counties often find they have to pay more money if a man or woman is living in his own apartments, or in a facility, such as Atlantis, than they do if he or she is in a nursing home. That's because the federal government pays the bulk of the nursing home fee. Likewise, assistance payments are cut off if a disabled person earns more than a pittance in a month's time. The cutoff can be as low as $65. The "maximum level of income"from federal state and county assistance payments is $185. This means many disabled persons are living below the poverty level as it has been defined for other underprivileged groups. The solution as viewed by those who put together the Atlantis report, is to simplify and integrate the complicated payments system. But even more important, to increase payments so that everyone gets the same amount of money whether he is in an institution or out. TRANSPORTATION. The report talks about a number of things here including electric wheelchairs and curb cuts, but is main statement under this heading is that bus systems such as the Regional Transportation District (RTD) should become fully accessible to the disabled. RTD, it contends, has been unresponsive to the needs of disabled would be riders for transportation to work, school and for pleasure trips. Even the special HandiRide service - which RTD often boasts is a frontrunner in the nation - is given poor marks. LAWS. [not legible...] Colorado concerning the disabled in general and the severely physically disabled in particular, the report states. Furthermore, it is not realistic to think that the disabled will get effective legislation passed without having government officials sensitized to the disabled's problems. This may already be changing. Largely due to lobbying by Atlantis, hearings were underway in the General Assembly this week on two bills aimed at helping the disabled. One, a Senate bill now in committee, would allow more Coloradans to receive payments so they could hire home attendants. The other, a House bill, is a "civil rights bill for the handicapped." It would bar discrimination against the disabled. Backers of the latter bill point out that it's needed because the federal civil rights laws, while dealing with the rights of racial minorities and women, have never guaranteed these same rights to disabled citizens. Idealy, says the Atlantis report, Congress and the state legislatures need to weed out laws which are confusing and contradictory, often creating "disincentives"for the disabled to pursue more normal lives. A wholistic approach is needed. JOBS. Virtually every problem mentioned above, plus all the others catalogued in the report, tend to stand in the way of the disabled person who seriously wants to go to work in spite of the lip service paid to the slogan, "Hire the handicapped," many find the doors still closed. The reasons are many and the problems complex. Lack of schooling is a factor. Some disabled persons have languished in sheltered workshops, counting fish hooks and getting paid $10 a month for it, the report says. Others have an education but find that architectural barriers, or the lack of adequate bus service, keep them from getting to jobs they could perform. And attitudes often stand in the way when physical barriers are moved aside. "Perhaps the greatest barrier of all is in the minds of men," the report notes. It advocates more and better training programs, plus affirmative action plans to assure that larger numbers of disabled workers are hired by public and private employers. In an elaborate ceremony several weeks ago, the Atlantis report was presented to Mayor Bill McNichols. But privately some of those connected with the report conceded they didn't expect to see much action on the local level until public policies in Washington and throughout the nation begin to change significantly. That's why the Atlantis group is placing much emphasis on its efforts to make an impression on the Carter administration during its formative period. The time seems ripe for a coalition of disabled groups around the country to launch a concerted civil rights drive on behalf of their "invisible" constituents. And the first test may come April 5, when many groups have threatened to stage a sit-in at offices of the Department of Health Education and Welfare, including the regional office in Denver, if new HEW Secretary Joseph Califano hasn't issued new regulations to implement laws for the disabled. "The disabled have been ignored far too long in this society," declares the Atlantis report. "We are demanding that our rights be addressed. We are giving you, the policy makers, our findings and recommendations on how to solve the inequities in the system. "The next is yours." Such words, when voiced by other groups, have inevitably been followed by major social changes. It seems likely the same pattern will apply here. PHOTO by John Gordon, News: A man lies in a hospital bed, covered by sheets. Photo is very dark and hard to make out. Caption reads: Shooting victim [unreadable] from nursing home [unreadable] he said [unreadable] has been paralyzed since [unreadable].
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[Headline] Alter Nursing Home Rules Colorado legislators came face to face recently with what many observers consider one of the major concerns in the nursing home field: the need for some individualization of treatment groups within facilities. Residents of the youth wing at Heritage House, 5301 W. 1st Ave., told lawmakers that for many months they had been encouraged to make remarkable progress toward self determination and varying degrees of independence. But late in 1974 the situation deteriorated into custodial and repressive care, resulting in deep bitterness between staff and patients and loss of self confidence by the patients, they said. At first, the problem seemed to revolve around personalities of two former youth wing coordinators and whether one could communicate more effectively with administrators than the other. But it developed during the hearing that there were indeed some apparent moves by administrators to intimidate staff members who had provided transportation to the hearing for several disabled young persons and their beds and wheelchairs. During an angry and tearful exchange, legislators learned that officials at the nursing home had “withheld” the time cards of staff members who, when off duty, had transported the young residents to the hearing. Those officials received a stern warning from Rep. Wellington Webb, D-Denver, chairman of the House Committee on Health, Environment, Welfare and Institutions, that their attitude was unacceptable and would be dealt with. Beyond the immediate clash at Heritage House, a deeper problem more reflective of the problem throughout the nursing home industry arose. Administrator Tom O'Hallaran explained the home is required to meet rigid federal and state standards that don’t take youth wings into account. One official suggested that the youth wing be reclassified to fit into a different regulatory category. But neither does that category address specifically programs for young persons. The biggest villains are the state social services department and state legislators, who together decide how much money young and old persons need for nursing home care, suggested Sandy Anderson, a welfare caseworker in Jefferson County. In a strongly worded appeal, she said geriatric staffing patterns and programs aren't adequate in a youth wing and per diem funding isn't sufficient. Miss Anderson’s point was the crucial one of the day. Different types of patients with differing needs shouldn't be mixed, yet that is the prevailing practice. A visit to almost any nursing home will find young and old, mental patients and senile retirees, able and disabled, and those needing custodial care and those who are bedridden mixed indiscriminately. The result is misery for patients and inefficient services from the nursing home staff. While it is obvious that officials at Heritage House have attitudinal problems to work out, it is also clear that the larger problem needs to be seriously addressed by the legislature. Colorado lawmakers should make sure that state rules are changed to allow differential treatment and should take their concerns to officials in Washington who administer federal funding and regulation systems. The change must occur all the way to the highest level of regulation.
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Charismatic Figure Absent - The Denver Post - Friday, August 2, 1974 PHOTO Denver Post photo by Bill Peters: Two thin young men with longish hair wearing sleeveless shirts sit facing a desk in front of them. On the other side, an older man with glasses in shirt sleeves and a tie (Gov. Vanderhoof) faces the two and the camera. One of the guys in wheelchairs has a poster-sign on the back saying "The handicapped are people too! Support [unreadable] RALLY!!! [unreadable]. Caption reads: Gov. John Vanderhoof talks with Gary Van Lake and Vic Stifel. The two men were in group of handicapped persons who visited the governor Thursday. [Headline] Wheel-Chair Group Gets Capitol Sympathy by Rykken Johnson A group of handicapped persons in wheel chairs looking for a “charismatic” figure to champion their cause for better care didn't find one in the governor’s office Thursday. The group, called The Organization of Disabled Adults and Youth (TODAY), met with a shirtsleeved Gov. John Vanderhoof for about 40 minutes to discuss problems faced by handicapped individuals and ways to reduce the difficulties. TODAY asked Vanderhoof for his support in channeling more state funds to improve staff and facilities at nursing homes and institutions for physically, mentally and emotionally handicapped persons. [Subheading] SYMPATHETIC EAR The governor listened solemnly, said he sympathized, reported that the state has been making strides for handicapped persons and will continue to do so, thanked the group for coming and told its members to drive carefully on the way home. None of the wheel-chair visitors as much as smiled at the sendoff from the governor's office. Outside, a couple of them replied with a flat no to a question if they thought they had found a leader for their cause. The meeting with Vanderhoof concluded a two-day rally by about two dozen individuals in wheel chairs from Heritage House and other nursing homes. The rally took place in front of Services, 1575 Sherman St., and the State Capitol. The organization, through seven members who met with Vanderhoof, didn't help its efforts by tying its plea to the employees’ strike at the Colorado State Hospital in Pueblo. Vanderhoof and other state officials have been battling with the strikers and their union for more than a week over pay for the state hospital staff. Although the state gained a court injunction on grounds the strike is illegal, some hospital employees Friday were still observing the walkout. TODAY spokesman Vic Stiefel, 29, told Vanderhoof that TODAY backs the strikers because the organization feels staffing is inadequate and pay too low at state institutions and that state reimbursement through state-administered Medicaid is too skimpy for private nursing homes like Heritage House to be effective. But the governor couldn't make the connection between pay and reimbursements, saying the dispute in Pueblo is a budgetary consideration and the nursing home difficulty a welfare consideration. Furthermore, Vanderhoof said, the state has made a “tremendous movement” to overcome architectural barriers against disabled persons and also is trying to influence the federal government to loosen its guidelines on Medicaid. The governor continued that under his program to restructure state government he is trying to get the state to deal more effectively with problems of the handicapped. [Subheading] 'NOT FAR ENOUGH’ Vanderhoof said the state "has come a long way over the last 8-10 years, but we haven't come far enough or fast enough". He said he would "pledge himself to problems of the handicapped. “We are moving in the proper direction but it's not going to happen overnight", he added. Later, in the governor‘s office, Wade Blank, a Heritage House employee who accompanied the disabled individuals said TODAY members were enthusiastic about chances that Vanderhoof will support “a good medical program." Blank disagreed that pay at institutions and reimbursements at nursing homes aren't connected, as Vanderhoof contended. "No matter what he says,” Wade said, “the state sets the reimbursement rate for the money a home gets.” He said one of the major problems at homes is that staff pay is low, that it doesn't go up very fast and that aides "burn out” in a few months and leave.
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Rocky Mountain News, Wed., April 6, 1977, Denver, Colo. PHOTO by John Gordon: A large crowd of protesters, many in wheelchairs, are gathered outside a building. All are facing the building and a couple carry signs. Caption reads: Wheelchair demonstrators gather at noon Tuesday in front of federal courthouse. [Headline] Disabled protest lack of HEW action By Alan Cunningham Chanting slogans and carrying picket signs attached to crutches, more than 100 disabled persons staged a protest march and sit-in Tuesday at the federal office building in downtown Denver. Their sit-in was expected to last all night outside the regional office of the U.S. Department of Health, Education and Welfare (HEW) It was part of a nationwide protest aimed at forcing HEW Secretary Joseph Califano to sign regulations implementing a "handicapped bill of rights" passed by Congress nearly four years ago. The demonstration was peaceful, for the most part, but was marred by one incident in which a parking lot manager across the street from the federal complex allegedly assaulted demonstrator Dennis Wilcox, a quadraplegic, causing him to fall out of his wheelchair. Wilcox apparently was unhurt. The manager, James C. Chidlaw, insisted the encounter occurred accidentally as he attempted to guide stalled motorists through his lot. But, on complaints by Wilcox and another demonstrator, Chidlaw was cited into county court to face two charges of assault. Simultaneous demonstrations too part at HEW headquarters in Washington and at regional offices in Denver and eight other cities. They brought forth an assurance from Califano that he would sign the regulations “early in May," but Denver demonstrators — part of a nationwide coalition which had demanded he sign by Monday - were unimpressed. In speeches outside the federal courthouse at noon Tuesday, they declared they wanted to see immediate action by HEW, followed by an aggressive program to carry out various facets of the four-year-old law. At issue is Section 504 of the Federal Rehabilitation Act of 1973, which had never been put into effect. Handicapped groups have fought with HEW secretaries under Presidents Nixon, Ford and now Carter to force them to sign regulations which would implement the act. A federal judge ordered last year that such regulations be signed, but the matter still went unresolved. The law when it takes effect, will guarantee many of the same rights to handicapped Americans which were extended to racial minorities and to women under prior legislation of the last two decades. Its provisions are expected to force public school districts to open many more of their classrooms to wheelchair-bound students, to force employers to grant equal pay to handicapped employees and to provide more stringent civil rights guarantees to those in nursing homes and institutions. The protests brought assurances from several elected officials that they were trying to persuade President Carter to speed up action on the matter. Messages to this effect came from Gov.Lamm and U.S. Sen. Floyd Haskell, D-Colo. In addition, a Washington aide to Rep. Pat Schroeder, D-Colo., told the News late Tuesday that she was drafting a telegram asking that Carter order Califano to act. Other protests took place at HEW regional offices in Boston, New York, Philadelphia, Atlanta, Chicago, Dallas, Seattle and San Francisco. Among the leaders of the Denver gathering were Ingo Antonisch, executive director of the Mayor's Commission on the Disabled, and Don Galloway, the new executive director of the Governor's Advisory Council on the Handicapped. Even Antonisch, an Austrian-born man with a stiff German accent and a generally conservative approach, was drawn into the militancy of the event. After acting HEW regional director Ed Lapidas read Califano's "early in May" statement, Antonisch stepped to the microphone and said, "Thank you very much," which inspired a woman in the crowd to yell, "We don't thank him very much, Ingo!" Antonisch got in the spirit by declaring, "I would like to say we hear the message but we want to see the action." Galloway, a black man who has been blind since he was 16, stirred up the crowd with a brief speech reminiscent of earlier civil rights campaigns. Taking his cues, they responded with lusty cries of “Right on" Even many who had difficulty speaking loudly and clearly joined in as best they could. At one point, Lyle Peterson, master of ceremonies at the noon rally, tried to lead the crowd in a chorus of "We Shall Overcome," traditional anthem of the black civil rights movement. The song proceeded weakly for a few seconds, but died when one protestor interrupted, shouting: "We want our rights!" Immediately, the crowd picked up his line and began to chant "We want our rights!" with an enthusiasm that had been lacking in the aborted attempt to sing. BOXED TEXT: We hear the message but we want to see the action. -- Ingo Antonisch
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November 1992 Access USA News Page 5 Atlantis leads to ADAPT leads to independence Cathy Seabaugh, Staff Writer DENVER,CO-Their offices are relatively small compared to the massive projects the American Disabled for Attendant Programs Today organization tackles. An inconspicuous location in south central Denver serves as national headquarters for the 29 states who have ADAPT chapters. This Colorado town is a gold mine for members of the disabled community, not so much for its accessibility and attitudes, but for the brainstem which this office at 12 Broadway has become. ADAPT representatives throughout the United States act as nerve endings, sending vital messages to the Denver office so it can operate efficiently and effectively. Effectiveness: a term well defined by ADAPT members. ADAPT was conceived and delivered by staff and volunteers of Atlantis Community, founded in 1975 by former nursing home employee Wade Blank and Mike Auberger, a quadriplegic from a bobsledding accident in 1971. Atlantis emerged so that individuals, even those who are severely, multiply-disabled, have the option to live outside an institution. ln its first l5 years, Atlantis was able to successfully transition more than 400 disabled adults from “sheltered settings" to more independent living standards. As an admirable offspring of Atlantis, ADAPT set its own agenda in June 1983 and embarked on an action-packed mission to make public transportation accessible to everyone. American Disabled for Accessible Public Transit set out to train, develop and empower disabled activists so they could effectively battle for that accessibility. Eighteen members of the Atlantis community had taken the first strides toward accessible public transportation in Denver when they gathered on July 5&6, 1978, to block city buses at Broadway and Colfax across from the state capitol. ‘Then in 1982, after beating up the board enough," said Auberger, one of the 18, "they decided they'd buy all lift-equipped buses." Once ADAPT formed the next year, the foundation was in place. With Denver as a model, activists began chipping away at other cities’ granite-like, antiquated public transportation systems. "(Former President Jimmy) Carter appointed Brock Adams in 1976 and Adams set a federal mandate that all new buses bought with federal money had to have (wheelchair) lifts,” Auberger said. "Under the Reagan administration, APTA (American Public Transit Association) sued (to avoid the lift requirements) and won. "APTA was having its national convention in Denver in October 1983 and about 20 people from across the country showed up to join about 22 people from Denver. We sent notice to (APTA) that their convention would not go uninterrupted if they did not meet with us. They went to the mayor, but he said he wouldn't protect them unless they agreed to meet with us.” ADAPT met APTA there. They would meet many more times. "We decided wherever they had a convention, we would go,” Auberger said. "It moved us around to communities where they'd never been exposed to the issues. People all of a sudden became aware. "If we're talking about the issues, people are going to form an opinion. You polarize people. Whether they support you or not is not the point. If there's not an opinion there, you can't change it." The deep roots, pockets or whatever of APTA were a long-time barrier for ADAPT. But as the Americans with Disabilities Act cemented and included regulations for public transportation, APTA’s resistance to ADAPT's demands weakened until the federal govemment finally made ADA the law. With that priceless piece of legislation signed and inducted into the pages of history, ADAPT was ready for its next mission. "What we said at that point to members was to put out feelers in your communities,” Auberger said. "What we found was personal assistants was the biggest issue of concern.” Retaining the ADAPT acronym, the group devised new plans to force change in the long-term health care system of the United States. “At least 60 percent of ADAPT members have (resided) in nursing homes at one time or another,” Auberger said, "The other 40 percent have spent their lives trying to avoid going into one.” Although ADAPT and Atlantis are neither to lose its identity in the other, they are a family unit and work together toward change. Atlantis is a certified home health care agency, making 53,000 visits each year in Denver and Colorado Springs, serving approximately 85 clients. “That's 365 days a year, whether there's three feet of snow on the ground or it's 105 degrees," Auberger said. “We have a 24-hours-a-day emergency backup system that works probably 98 percent of the time." One Atlantis client is a C2 quadriplegic who is on a ventilator nonstop. Yet he is allowed to live in his own home with the help of Atlantis personal attendants. "That shows you our capabilities,” Auberger said. ”We can provide 24-hour care for about $7,500 a year. A nursing home would do it for $20,000.” ADAPT’s scrapbook for the past two years includes protests in almost countless cities throughout the country. Wherever Dr. Louis Sullivan, Secretary of the Department of Health and Human Services, made a speech or appearance, ADAPT added itself to the invitation list. The protests usually involved arrests, which is a proven effective tool for drawing media coverage. Radical activity, some say. "We really give the middle-of-the-road disabled community members the power to make change," Auberger said. "We make them look sane. “It's like in Illinois, Gov. Edgar didn't have a problem meeting with the straight group who went to Springfield because they were sane. lf he dealt with our radical group, he'd have to deal with all radical groups. We really give (middle-of-the-road community members) a platform." ADAPT picks on Sullivan because, they say, he can initiate change. They argue that Sullivan's signature is all that's necessary to require the states receiving Medicaid to provide personal assistants. Just more than half the states provide such funding and many; if not all, of those programs are underfunded, restricted and far short of meeting the demand. ADAPT seeks to convince Health and Human Services - Sullivan - to take one-third of the $15 billion Medicaid dollars and commit it to home-based, consumer-controlled services. "Every state that buys into Medicaid has to fund nursing homes,” Auberger said, explaining how the system currently works. Sixty-five percent of all money paid to nursing homes is Medicaid funds. "States have little play in what they can do with Medicaid.” Nursing homes use what's called a “cold bed rate" which refers to the empty beds in their institutions that are not producing income. Lobbyists for the nursing home industry are looking at these rates and profit margins, not at long-term care that allows individuals to retain their independence. "We’ve become a valuable commodity,” Auberger said. "It's a normal mindset to put someone in a nursing home. This is so ingrained in our society. There's currently no alternative, and most people aren't able to envision the type of care we're talking about." Auberger encourages every person he can to write letters to members of Congress, senators and other politicians who can have an impact on the future of people with disabilities. "When you do that, you raise a level of consciousness,” he said. "You don't have to mention (the numbers), just the concept. "The logic is the problem. When parents are doing (personal attendant care), for free, it doesn't have to be skilled. When Medicaid pays for that same care, a nurse has to do it.” Statistics provided by the American Health Care Association show the average lifespan on an individual in a nursing home is 21 months. "You can't convince me there's quality care in a nursing home," Auberger said. "We (at Atlantis) are non-medical personal attendants. When the staff goes into a home, the person in that home is the boss. We do things the way they want us to do them. "People don't have to give up their power to able-bodied people. But it's okay to share the power." Although many members of the disabled community have made endorsements this election year, ADAPT chooses to remain rather neutral - for a change. "Don't pick a side,” Auberger said. "As soon as you pick a side and that side loses, you now have an enemy on the other side. That's been real effective tor us. We'll rate candidates on disability issues, but we won't endorse anyone. "If there's a disability issue in Colorado, legislators call here, the media calls here. We're a powerful entity in this state. As hundreds of ADAPT activists confronted the annual conference of the nursing home industry in San Francisco October 19-21, the power of this entity spread toward the Pacific. Persons interested in more information about ADAPT can call Auberger or Wade Blank at (303) 733-9324 (voice and TDD). INSERT AT CENTER OF PAGE: Across the top in bold letters the word "ATLANTIS" and below that ADAPT's new Free Our People logo, the wheelchair access symbol with it's arms raised above its head breaking chains that are bound to it's wrists. Above this figure, in a semi-circular pattern the words "Free Our People" and below, also in a semi-circular pattern, "ADAPT"
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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
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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."
Video Incitement- Las Vegas 1994
Here is the video Incitement story of the ADAPT action in Las Vegas Nevada, 1994, when ADAPT again protested the American Health Care Assn, AHCA, convention there. Closing streets, protesting at the Convention Center and the AHA hotel, ADAPT fought to make the nursing home providers deal with the pain and havoc their industry causes in the lives of people with disabilities of all ages.
ADAPT v AHCA Las Vegas 1994
Edited video footage of Las Vegas ADAPT action mixed with news clips from same action. Shows protest of AHCA convention by disability rights group ADAPT. Shows protests at Las Vegas Convention Center, on Paradise Dr. and at Hyatt Hotel. Video by Gordie Haug
Video-Incitement Lansing
This is a video Incitement for the ADAPT action in Lansing MI in 1995. We took on Newt Gingrich, the Michigan Republican party, Governor Engler, and the State Capitol and legislature.
Real_People_Real_Voices_2006
Abridged version of testimony on getting out of nursing homes and how that changed people's lives for the better. 7 hours of personal stories were shared by people with many kinds of disabilities at ADAPT hearing in Nashville TN in 2006. This video just includes highlights. Original music by D4Dub and Ballad of Josie Evans sung by Johnny Crescendo.
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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 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."
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Title: Protesters hit Illinois center in wheelchairs By Neil Steinberg, Staff Writer Disabled protesters from around the country used their wheelchairs to block access to the State of Illinois Center on Wednesday, the fourth day in their call for state funds to be directed toward home care instead of nursing homes. “The people united will never be defeated," chanted about 200 protesters, blocking elevators, escalators and stairways at the building. “No more cuts.” There was no violence and no arrests, though protesters did scuffle briefly with police outside the governor's office, where they demanded a meeting with Gov. Edgar, who is in Springfield. Government business slowed to a near halt as state workers crowded the rings of balconies at the center, watching the chanting wheelchair activists on the main floor. Although employees could move among the upper floors by using the unblocked exterior staircases, it was often difficult to reach the ground floor. Two employees from the lieutenant governor's office found themselves trapped in a fire stairway when their attempt to take a garage elevator out of the building failed. “They captured the car elevator,” a maintenance man told the two young workers. Swearing, they tried another route. “This is starting to inconvenience me," one said. Tourists and school `groups` visiting the building got a surprise introduction to special-interest advocacy. An architecture club from Reading, Pa., here to appreciate the 16-story curving edifice designed by Helmut Jahn, stopped to reprimand protesters for keeping them off the elevators. State workers, some of whom literally climbed over the wheelchairs of protesters, also put in a word or two. “You are a lawless mob,“ a worker for the Department of Rehabilitative Services told a group of protesters blocking the elevator. “They have a right to protest," the worker said. “They don’t have a right to interfere with our lives." PHOTO by SUN-TIMES /Al Podgorski: A man walks up escalator steps with another man in his arms, as two other men stand on the side of the steps. Below on the floor level, a mass of people in wheelchairs, and a few standing, crowd the entire rest of the scene. Some are wearing ADAPT t-shirts. A security guard stands at the bottom of the escalator to one side. Caption: Joe Potter of Denver carries a men who usually uses a wheelchair up a stopped escalator at the State of Illinois Center on Wednesday. The protest by disabled activists was the fourth in four days.
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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.