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+ nursing homes 6
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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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The Denver Post Tues. March 4, 1975 [Big Masthead: The Denver Post Founded on October 28, 1895 by F.G. Bonfils and H.H. Tammen Helen G. Bonfils, Officer and Director, 1933-72 "Dedicated in perpetuity to the service of the people, that no good cause shall lack a champion and that evil shall not thrive unopposed" Donald R Seawell, President, Chairman of the Board Charles R Buxton, Executive Vice President, Editor and Publisher Earl R Moore, Secretary-Treasurer William Hornby, Vice President, Executive Editor Robert H Shanahan, Vice President, General Manager] [Headline] The Post's Opinion [Subheading] A New Atlantis Is Born It didn't attract much attention. but the birth of the first phase of the Atlantis project is an event for rejoicing—as well as a warning for caution. A group of disabled persons in Denver, spurred to expectations of a better life by a new-found militancy, for some months now have been working to bring to to life a planned community in which handicapped persons could live a more normal life. This type of community, they hoped, would be free of confining nursing home atmospheres which so easily could make "vegetables" out of young patients without hope for anything more. Now, it has been announced, the first step toward that new independence has been successful. Within three months 14 disabled young persons will move from nursing homes into a cooperative apartment living situation in which they can receive the medical and supportive services they need in addition to the freedom they so desperately seek. The group will move into a renovated apartment complex called Las Casitas Homes at W. 11th Ave. and Federal Blvd. They will receive services and funding from a variety of sources. It is with a project such as this — perhaps unique in the nation — that disabled persons can find their level of dignity and productivity. For too long they have suffered through stereotyping which never realized their potential. However, the note of caution comes here: The participants in the program must be carefully screened so that those who take part can experience success in their new life styles; and those who are chosen must not reject the level of assistance that they still require in the headiness of their new freedom. If the commitment of all concerned is well established, the program should work and become a guiding light for other communities across the country.
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MAinstream magazine [No date] [This story continues in ADAPT 222, but is contained here in its entirety for reading ease.] [Headline] ADAPT takes the fast lane to make transit accessible By Michael Ervin San Antonio—The first indication that something was about to happen came when an oversized, stretch-limo of a van pulled up beside the Alamo and a wheelchair lift uncurled out of the back door. The colorful banner on the side of the van read: ACCESS FOR ALL. Six more people in wheelchairs were in another van parked in a lot down the street. As they proceeded down the sidewalk to join the demonstration in front of the Alamo the pedestrians stopped and looked them over. A parade of people in wheelchairs is bound to draw stares. But the expressions accompanying these stares were unique—welcoming, supportive, somewhat star struck. Maybe they knew they were coming. Before the 50 or so members of various chapters of American Disabled for Accessible Public Transit even arrived here there were stories in the media about previous ADAPT confrontations with the American Public Transit Association (APTA.) Television news showed footage of the mass arrests that occurred last October in Washington, D.C. when ADAPT members tried to force their way into the center where APTA was holding its annual convention. That's the kind of escalating media coverage Wade Blank likes to see. He’s the main force behind ADAPT. “We're becoming famous. When we had our first ADAPT meeting in Denver in 1982, our goal was to make the officials of any city we were coming to nervous. We wanted them to say, ‘No! Not here! We don’t want ‘em!’” They were certainly nervous in San Antonio. When a horde of people in wheelchairs showed up at the offices of the local transit authority for a noisy demonstration, the employees locked themselves in a large office as if they were afraid ADAPT was going to take them out one by one and shoot them. And when the march that began at the Alamo turned into an equally raucous occupation of the lobby of the posh hotel where APTA people were staying, hotel security had no idea what to do. And the bewildered looks of the innocent tourists were amusing. They’d certainly never seen anything like that before. “Seeing a bunch of disabled crazies blocking buses and doing things like that redefines everything everybody’s been conditioned to believe about the disabled," Blank says. This radical redefinition of what the disabled are (in the eyes of both the disabled and nondisabled) is what ADAPT is all about. And having stuffy APTA conferences and conventions as a backdrop helps make that point. APTA’s primary sin, according to ADAPT, is that it spent big bucks on a lawsuit that struck down the federal mandate that all fixed-route public buses be lift-equipped. ADAPT sees equal transit access as the most basic civil right. “It's the same segregation as when blacks had to sit in the back of the bus or yield their seats to whites. Except it’s even worse,” says Blank. “The disabled can’t even get on the bus.” By using APTA as a symbol of the stifling paternalism that keeps the disabled in a position of dependency, ADAPT makes the immorality of inaccessible public transit quite clear. *** Wade Blank is an ordained minister who never goes to church. “It’s in the true Jesus tradition. He was kicked out of the synagogue and never went back.” Blank worked in a nursing home for a few years after seminary. It frustrated him to see the disabled friends he made there stuck there simply because they had no place else to go. So in 1976 he and some others began Atlantis, an independent living center in Denver. ADAPT was born of Atlantis. Blank says Atlantis likes to “do the impossible” in terms of working with clients who have the deepest holes of dependency to dig out of. Frank, a man with cerebral palsy who was part of the ADAPT Denver caravan to San Antonio, was sprung by Atlantis in 1976 from a nursing home he had been in since 1934. Another woman began feeding herself for the first time when she became part of Atlantis. She was always physically able to. Her mother just didn't want her making a mess. Another woman had never seen a head of lettuce. Her salads had always come to her prepared. It’s rather stunning seeing people who were mired in the world of please and thank you traveling around the country, blocking buses and maybe getting arrested. It’s gotten ADAPT and Atlantis in trouble with irate relatives. The father of a woman arrested for blocking buses in Denver told Wade that since he was a reverend he must be brainwashing his daughter into joining his cult, just like Jim Jones. He said he was going to tell the newspapers so they could investigate. But Blank says, “All we’re saying to people in Atlantis and ADAPT is, ‘You are an important person.’ I just tell them (the irate relatives) that people get excited when they see that they are important and that they are expected to be somebody.” In 1978, it became clear that the mission of Atlantis could never be fully accomplished as long as Denver’s public transit system was totally inaccessible. What good was it to set someone up in an accessible apartment if they couldn’t move beyond it? They might as well have still been in the nursing home. So the Atlantis people took to the streets of Denver. They blocked buses. They held sit-ins in the transit authority offices. They got arrested. But four years later, they won and Denver is on its way to full access. [Bordered text box in center of page: “We created a drama and let it unfold . . .I guess we raised consciousness.”] The next year, APTA made the mistake of holding its convention in Denver. The target was too tempting for Atlantis to resist. Here was the personification of everything Atlantis opposed right on its step and begging to be hit. Atlantis formed a permanent transportation component call ADAPT. They organized confrontations around the convention and vowed to follow APTA everywhere until it passed ADAPT ’s resolution renouncing the lawsuit and the damage it did. These confrontations would also provide a focal point and a training ground for activists from other cities so they could form their own ADAPT chapters. Mike Auberger of Atlantis is a quadriplegic resulting from a bobsled accident during the 1972 Olympic time trials. “When we started ADAPT, we were a bunch of crazy nuts. A year later, we were a possibility. Now, we’re a reality. We started in one city and here we are about 20 cities. We must be selling something everybody needs.” The hope is that the feeling of self-importance that inspired the disabled of Denver will be as infectious in San Antonio and in cities all over America. ADAPT paved the way in San Antonio by creating a three-day headache for the police and transit authority and forcing them to take the issue very seriously. They also permanently etched the issue on the minds of the people of San Antonio with pictures on the front page of the newspaper of disabled people blocking APTA tour buses. “We created a drama and let it unfold,” Blank says. “I was talking to a reporter and I said, ‘I guess we raised consciousness.’ She said, ‘Boy did you! That’s all this town is talking about.’ ” “Now you can’t say that about too many political movements today.” But even if it doesn’t play in San Antonio, Auberger sees what happened there as another battle won. “Again we took on APTA and beat them. You’ve got this guy in a $300 suit and a designer tie with his initials and a soup stain on it. More and more people are starting to see APTA that way.” If success can be judged by police reaction, ADAPT is accomplishing a lot. Knowing ADAPT ’s penchant for blocking buses, the police routed buses away from areas with high ratios of wheelchair-users. They obviously did their homework by talking to police in other cities who had to deal with ADAPT. A television news report even told of how San Antonio police intelligence photographers were following ADAPT members around. And it’s clear that transit authorities are taking ADAPT very seriously too. The next target is Los Angeles, where APTA will hold its convention in October. ADAPT has obtained a copy of a private memo of the Southern California Rapid Transit District that speaks of the authority’s plans to spend $10,000 to $15,000 to “handle vast numbers of wheelchair bound people” who will be coming to town. “While confrontations cannot be stopped, they can be blunted.” It speaks of how the RTD is “searching for ways to diffuse or ward off demonstrations,” perhaps by pacifying everyone for a few days with a conference on accessible transit [ibid]. “Can we take control by creating a hospitality center for the handicapped?” the memo says. Who can resist such an opportunity. ADAPT is on its way.
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Different TIMES, September 24, 1990, p. 6 ADAPT fights for attendant services (Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.) [This story continues on 623 but the text is included here in full, for ease of reading.] “People with disabilities have the civil and human right to dependable attendant services that meet our daily needs in the location and manner of our choice." This simple declaration, made in Denver this summer, signaled the offensive being launched by ADAPT against “the nursing home lobby feeding off peoples' lives." It's ironic, says ADAPT member Mark Johnson. "Here we've finally got our rights now, in a law, and here you have more and more severely disabled people wanting to kill themselves—literally kill themselves—because they're being forced into nursing homes." “That Ken Bergstedt in Nevada [who petitioned the court in May to disconnect his respirator] is literally saying, “l'll end my life before I'll go in a nursing home," Johnson said. “What do you expect when people only have institutionalization to look forward to?" adds actress Nancy Becker Kennedy, one of the group that conducted a hunger strike in Los Angeles in July to protest the cut of California’s In Home Supportive Services. “Their attempts to stay in their homes are thwarted." lt’s the same with Georgia's highly publicized Larry McAfee, who was just put into a “group home," says ADAPT. Even after all the publicity, the State of Georgia will not put any money into funding attendant services in one's own home. And ADAPT is fed up. Recalling the phrase the transit industry used to argue that each city should decide whether or not to put lifts on buses, ADAPT calls the patchwork system of funding in-home services “the old ‘local option’ stuff all over again." “We're sick of it,"says Johnson. There needs to be a national commitment. In California, activists battled for several months to restore their In Home Support Services program which had been entirely cut from the state budget—and succeeded only in restoring it to its former level, which allows a disabled person to hire an attendant only at minimum wage and for no more than eight hours a day. People who need an attendant around the clock, like Ken Bergstedt, have little hope of avoiding a nursing home even in California, often cited as the state with the best attendant services program in the nation. Yet such battles sap the energy of disability activists for the larger fight for a national commitment. ADAPT has modified its former name, “American Disabled for Accessible Public Transportation" to “American Disabled for Attendant Programs Today" to reflect its new focus. ADAPT says attendant services are a right. The group wants the program it's calling for to make attendant services available "based on functional need" rather than “whether a person can work or not." They don't want "employability" to be a "condition for getting services. And they don't want eligibility based on any specific disability, as it is in many states now. They want it to be available “to people of all ages, 24 hours a day, seven days a week, with back-up emergency services."They stress they're not asking for “someone to hold your hand" but are speaking of the realistic needs of people like McAfee, Rick Tauscher, and Bergstedt who need an attendant available around the clock. They also say a program that allows the disabled person maximum control over an attendant is mandatory. Maybe a disabled person won’t want that control; maybe they'll want someone else to handle the paperwork and hiring decisions. That should be the disabled person‘s option, they say. There’s a quality-control issue here, they insist; they want to make sure disabled people get quality care but are allowed maximum say over personal services they receive—which is all too often not the case today as home "health" agencies muscle their way into the home "care" field. They‘re sick of the word “care.” They want a program that doesn’t keep anyone from services because they make too much money; they're willing, they say, to deal with a sliding scale for fees for such a program; but they want it available to anyone who needs it—regardless of income. It's a right, and cost is simply not an issue, they say. Keeping disabled people in institutions is ludicrously more expensive than providing in-home services in this country today. They blame that lack for the problems Larry MeAfee's constantly found himself in; they blame the nursing home industry for siphoning off the money that could go to fund such services. And they charge that home health agencies are nothing more than “the new nursing homes." Home health agencies “take people on Medicare and give them services and then bill them for $60 a pop," says ADAPT organizer Wade Blank. “Then when their Medicare coverage runs out after six months, they drop ‘em." The group says it’s also targeting “the big insurance companies like Prudential" and health maintenance organizations, who they say have a vested interest in keeping the system like it is. “We're saying that ethically and morally, nursing homes are not the place to go," says Blank. “When I see my severely disabled friends, living in their own homes, when l visit them in their apartments, listen with them to records or order in a pizza—and then I see my friends living in nursing homes, wasting away, waiting to die, I get very, very angry,” said Southern California ADAPT member Lilibeth Navarro. A survey of ADAPT members through their newsletter, Incitement, led them to decide to shift the focus to attendant services, said Navarro. And they're emphatic about the term too. “It’s not ‘attendant care‘ anymore," said Blank. “Whenever anybody said ‘care’ everybody booed,“ he added. It is fitting that ADAPT, whose original members came from Denver‘s Atlantis Community, will focus on attendant services. It was that need which led to the start of Atlantis, a “community” of disabled people and attendants. Atlantis “has a neat system,"agrees Navarro, noting that the 24-hour rotary attendant services allows any Atlantis person to have an attendant available whenever it's needed. “We could call an attendant at 11:30 p.m. and have somebody here," she said. “People who are having trouble with attendants can call and get an emergency back-up." Navarro, like others, said she knew of people “who endured abuse because they were afraid to lose their attendant"—"because it's so hard to find somebody, and nobody to turn to in an emergency situation." She related the story of a man whose attendant simply walked out on him and left him, unable even to reach a phone, for four days. “If his father hadn't checked on him, he'd be dead." “Only a national attendant program," she stressed, “will free us from emotional slavery Nancy Becker Kennedy agreed with Navarro. “The linchpin for independent living is in-home attendant services. It’s humane; it gives us a future." The group has sent a letter to Health and Human Services Secretary Louis Sullivan demanding a meeting in Atlanta Oct. 1; they've given Sullivan until Aug. 15 to reply. ADAPT activists from around the nation will descend on Atlanta the first week of October to launch the fight. They’ll be calling for a quarter of the money now going to the nursing home industry to “go into a pot for attendant services." As usual, ADAPT doesn’t expect this to happen without a fight -- primarily from the “nursing home lobby.” “This October," says Blank, “we will serve notice on those groups who are the enemies of a national attendant services program." TEXT BOX: ADAPT will converge on Atlanta — home of Morehouse College, HHS Secretary Louis Sullivan’s alma mater — on Sept. 28 for week-long direct action protest and training. Nationally known organizer Shel Trapp will conduct the session Saturday, Sept. 29. For more information on travel and hotel arrangements, contact ADAPT in Denver at (303) 936-1110. — Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.
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Edition USA/Colorado ADAPT seeks home care for all by Kerri S. Smith A national disabled persons’ advocacy organization based in Denver has launched a campaign aimed at moving people from nursing homes to home care. American Disabled for Attendant Programs Today (ADAPT) has at short-term goal: to re-direct 25 percent on the government's annual nursing home care budget. That money—estimated at $5.5 billion federal money and $5.5 billion from state coffers-would fund a national home care program instead. Under the ADAPT proposal, nursing home residents whose care is covered by Medicare or Medicaid could live at home. The government would pay home are attendants to care for them, rather than paying the facility. ADAPT spokesperson Mike Auberger said the group seeks “the ultimate demise of the nursing home system," and contends that paying an attendant to provide home care for a person usually costs less than nursing home care. In theory, the ADAPT plan would spend government money more efficiently-the same money would be used to care for more people who need assistance. The government is not enthusiastic about the idea, and a local nursing home industry spokesperson said ADAPT's demands are unrealistic. Auberger said Health and Human Services secretary Louis Sullivan declined to meet with ADAPT representatives. "We've been going back and forth with them, and the outcome is he doesn't meet with radical groups," Auberger said. And Arlene Linton, executive director of the Colorado Health Care Association (CHCA), said moving nursing home residents out of facilities “would isolate many of them from the community. “They'd also be without the 24-hour-care and rehabilitative services provided in nursing homes," Linton said. CHCA is the local branch of the American Health Care Association, which represents the nursing home industry. Linton added that ADAPT "is talking dollars, not people. Some residents have outlived their family and friends, and need the support a nursing home offers." A national campaign to publicize ADAPT's proposal began Jan. 15. Members demonstrated at government offices (including Health Care Financing Administration offices) and nursing homes in 24 cities. Auberger said media coverage was minimal, due to the Persian Gulf Crisis. Locally, ADAPT representatives demonstrated in Lakewood at Bethany Care Center. In the mid-'70s, the facility was operated by different owners and was known as Heritage House. Conditions at that time sparked a 13-year lawsuit over nursing home residents’ rights. The Federal Omnibus Reconciliation Act (OBRA) of 1988 also addressed quality of life issues for nursing home residents. The bill became effective Oct. 1, 1990. ln 1974, former Heritage House residents joined with Denverite Wade Blank and others to form the Atlantis Community, a local home care agency that currently cares for 135 people in Denver and Colorado Springs. Later, Atlantis Community leaders founded ADAPT. The group mobilized the civil rights movement for disabled persons, and ultimately affected the way nursing homes are inspected and regulated nationally. Auberger claims many current nursing home patients don't require intensive medical care, and "end up there only because they're out of money or their families can't care for them." Linton said CHCA met with ADAPT representatives twice to discuss the attendant proposal, "but they rejected our request to form a task force to find common ground." While Linton endorses home care as “a part of the long-term care continuum," she called the ADAPT proposal “robbing Peter to pay Paul. "We cannot support the concept of lowering funding for nursing home patients, to set up another funding to attendant services," Linton said. “We need new, additional funding for that." Recent federal budget cuts may make additional funding unlikely, at least in the near future. Atlantis and ADAPT are determined, however, and they are prepared for a long campaign.
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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"