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Hjem / Albumer / Merknader ADAPT - American Disabled for Attendant Programs Today
+ Atlantis Community 6
ADAPT (1764)
IF HEAVEN ISN'T ACCESSIBLE, GOD IS IN TROUBLE by Tari Susan Hartman Reprinted from Incitement, A publication of Atlantis/ADAPT [This article appears in ADAPT 1764 & 1773 but is completely included here for easier reading.] ADAPT mourns the loss of one of our greatest leaders, Wade Blank, and his son Lincoln. while on a family vacation in Todos Santos, Mexico, Lincoln got caught in an ocean undertow. Wade swam out to save him and both drowned on February 25th, 1993. They are survived by Wade's wife Molly and daughters Heather and Caitlin. Ironically, Wade died in the same way he lived swimming out into the face of hostile under currents, and giving his life to help others fight for theirs, Those who have come to national ADAPT actions remember in the early days Lincoln rode along on Wade's back. Later, he walked by wade's side while Caitlin rode. with his elfish smile, Lincoln quietly drank in all the action at demonstrations, vigils, planning meetings and anything else that came up in his dad's activist life. while other kids play "doctor" or "house", Lincoln played "rally." Wade was born December 4, 1940 in Pittsburgh, PA. After attending an all white high school, he travelled with Dr. Martin Luther King Jr. to Selma on a dare by a black college roommate. His experiences there taught him the deep oppression perpetuated by our "civilized" society. Once he graduated college, he served as pastor of a church just outside of Kent, Ohio that became the underground meeting place for the Students for a Democratic Society, SDS. After the Kent State killings, he returned to get a masters degree from McCormick Theological Seminary and was ordained a Presbyterian minister. Burnt out on his past activism and organizing, he moved to Denver and began working in a nursing home. with years of civil rights, war on poverty and antiwar organizing experience, he could not ignore the oppression he found there. So he began to deliver Dr. Martin Luther King Jr.'s dream of freedom directly to the doorstep of the disability ghetto: the nursing home. In 1971, while on staff at Heritage House, a Denver nursing home, Wade tried to work within the system to dignify the lives of the young disabled residents. A recent ABC—TV movie with Fred Savage entitled "When You Remember Me" chronicled this story. Wade and the resident's efforts were doomed to fail, but they gave birth to a better alternative. In 1974 Wade founded the Atlantis Community a model for community-based and consumer controlled independent living center named for the lost continent of Atlantis, those easily forgotten and dismissed. The first members of Atlantis were those young adults incarcerated in Heritage House, from which Wade had been fired. Forgotten by the system and often by their families, these individuals were not forgotten by Wade as he began to liberate them from the nursing home into the Atlantis Community. Years later Wade and attorney John Holland masterminded a $32 million lawsuit against Heritage House nursing home for obstruction of justice and violation of civil rights. The case went all the way to the US Supreme Court. Today many of those original nursing home residents are raising families in homes they now own. In 1978 Wade and Atlantis realized that if people with disabilities were to truly live independently, they would need, and should have a right to, accessible public transportation. On July 5-6. 1978 a "gang of nineteen" disability activists and Wade held their first inaccessible bus hostage in the Denver intersection of Broadway and Colfax. Late that night Wade was surprised when US Congresswoman Pat Schroeder handed him a doughnut and a cup of coffee. Atlantis‘ decision to take the fight for lifts on buses to the national level soon led to the birth of ADAPT (American Disabled for Accessible Public Transit. ADAPT was the nation's first direct action, grass-roots movement of disability activists and mushroomed in over 30 states, Canada, Sweden and England. Like the freedom riders of the 60s, ADAPT's struggle for accessible public transit became a national battle cry of the 80s. Over the course of eight years of biannual national demonstrations throughout the country, hundreds of ADAPT activists and their families and friends were arrested for their beliefs and commitment to ensure civil rights for all disabled citizens. Twelve years after the first bus seize, the Americans with Disabilities Act, ADA, mandated lifts on buses. ADAPT's street chant "access is a civil right" echoed in the halls of Congress, as politicians became increasingly aware that ADAPT and the disability rights movement fully expected ADA to be passed as landmark civil rights legislation. ADAPT organized the "wheels of Justice" march in March of 1990, and Wade played a key role. It was a call-- to— action that galvanized the disability rights movement to demand swift passage of ADA with no weakening amendments. Over 1,000 disability rights activists from across the nation joined forces with ADAPT to demonstrate to the world that they were to be taken seriously. On the second anniversary of the signing of the ADA (July 25, 1992), the city of Denver and its Regional Transit District commemorated that historic event by dedicating a plaque to Atlantis/ADAPT and the "gang of nineteen" who held the first bus. Wade refused to have his name engraved on the plaque, but his silent tears at the dedication ceremony revealed the depth with which he felt the issues of disability rights. He had left his mark forever etched in the foundation of our civil rights movement. In 1990, when it was clear that ADAPT had successfully led and won the fight for accessible public transportation with the passage of the ADA, wade and other national ADAPT leaders convened to plot their next course of action. There was little question for anyone what that next issue would be. ADAPT transformed its mission and became "American Disabled for Attendant Programs Today." Together, ADAPT and wade returned to the scene of one of society's most heinous crimes the warehousing of 1.6 million disabled men, women and children. These disabled Americans committed no crime, yet were and still are, interred against their will, in nursing homes, state schools and other institutions. They are used as the crop of industries like the nursing home lobby, physicians and their conglomerate owners who continue to get rich by robbing our people of their fundamental civil, human and inalienable rights to life liberty and the pursuit of happiness. Most of us are spectators sitting on the sidelines of life, learning history from books. Wade, was an active participant in over three decades of political organizing. He taught others how to create and record their own destiny. A brilliant strategist, he helped shape the tide of the disability rights movement. Yet Wade was never too busy to roll up his sleeves and assist someone with attendant services, push or repair a chair or drive a van. He stood up for what he believed in and expected others to do the same. In his Pursuit to free others from the chains of oppressions he was arrested 15 times and proud of it! Several weeks ago Wade Blank's story, including the development of Atlantis and ADAPT, was officially accepted into the National Archives. Wade, a passionate Cleveland Browns fan, was a loving husband, daddy, friend, organizer and leader. He valued and encouraged the unique contributions that each of us has to give to ourselves, each other and the world around us. We honor his contribution, value his friendship, and grieve the loss of our beloved friend and colleague. Wade was one of the few non disabled allies of the disability rights movement who understood the politics of oppression. At times through the years, his leadership role was questioned, but he never lost sight of the vision, nor lacked the support of those he was close with. Photo by Tom Olin: Wade Blank and Mike Auberger sitting on either side of the plaque honoring the Gang of 19. Caption reads: Co-Directors Wade Blank and Mike Auberger reflect on the past decade of organizing and activism.
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Column title: PEOPLE WHO MAKE A DIFFERENCE Photo: A downward shot of Wade Blank standing with his hands clasped. He has his signature long hair and tinted glasses and is wearing an anorak. Someone is partially visible behind Wade. Caption reads: Wade Blank dedicated almost 20 years of his life to fighting for civil rights for people with disabilities. The members of ADAPT - the disability rights organization Blank founded - will continue the battle in his memory. Title: A True Activist Wade Blank was raised in Canton, OH, where he learned to be a Cleveland Browns football fan. a condition that caused him great pain throughout his life. He earned the equivalent of a doctoral degree in theology from McCormick Seminary in Chicago, where he was ordained a Presbyterian minister. After seven years as a minister, he decided to take a year off for “human service" and became an orderly in a nursing home. His experiences there with young adults with disabilities led him to establish the second independent living center in the nation in 1975—the Atlantis Community. Wade Blank dedicated almost 20 years of his life to fighting for civil rights for people with disabilities. The members of ADAPT—the disability rights organization Blank founded will continue the battle in his memory. Blanks first years in his efforts to win civil rights for people who have disabilities were spent eliminating attitudinal and architectural barriers in Denver. Beginning with l2 young adults with disabilities who were placed in a nursing home for lack of any other options, Blank led them on an exodus into their own homes in the community, where he successfully persuaded the legislature to fund needed personal care assistance outside an institution for the first time. Since then, the Atlantis Community has liberated more than 900 people with severe disabilities from institutions and other sheltered settings and provides the services and support they require to maintain themselves in the community. Once the people of Atlantis entered the "free world," they found that society was completely unprepared to include them. So Blank and his friends set off to integrate Denver. The public buses they needed were inaccessible to wheelchairs. Blank led training sessions and actions that escalated from addressing the transit board to civil disobedience, blocking the buses people with disabilities couldn't ride. This seven-year campaign resulted in a 100% accessible bus system that offers affordable, self determined transportation to over 30,000 riders with disabilities in the area, and it developed an assertive group of people who vowed to fight for and win full and equal rights in their society. As the reputation of Denver as the most accessible city in the nation spread, activists from every state began to call for advice and help. ln1983, Blank founded ADAPT (American Disabled for Accessible Public Transit) as a training project. The dramatic actions of ADAPT members have generated publicity that has raised awareness of disability rights throughout the nation, trained over 1,200 activists in the “fire” of civil disobedience, and provided the political muscle behind the Americans with Disabilities Act. When the right to access to public transit was won in 1990, ADAPT’s name was changed to American Disabled for Attendant Programs Today. The new focus is on winning a federal mandate and funding for personal assistance services for every person with a disability in the nation who needs such help to live independently. Blank and his son Lincoln drowned on February 15, 1993, off the Baja Coast. The people of ADAPT will continue the struggle for this essential victory in their memories until all Americans with disabilities have the opportunity to choose to live independent lives. —By Molly Blank
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The Handicapped Coloradan / Page 15 & 16 [This article continues in ADAPT 1786, but has been completely included here for easier reading.] Title: "If heaven isn't accessible God had better Watch out!" Photo: Waist up picture of Wade Blank with his below shoulder length blonde hair and round tinted glasses. He is smiling and wearing a vest. Caption reads: Wade Blank ADAPT founder dies in Mexico. Wade Blank went down to Baja, California, in February and drowned there trying to save his eight year old son Lincoln. He was there vacationing with his family. The money for the trip came from Wade’s share of a legal settlement in San Francisco when bad guys violated the civil rights of ADAPT demonstrators. He couldn't afford that kind of trip on his own. He never made more than $16,000 in his life. Lincoln was in the water swimming. An undertow got him and Wade went in after him. He had to know there was very little chance either one would survive. Some fisherman from a nearby village fished Wade’ s body from the water. His wife Molly brought his body home and they covered the coffin with an American flag. Only the stars on this flag formed a wheelchair. Lincoln’s body was never recovered. A few days before he left on that vacation, I told him to skip Baja and its treacherous waters for the calmer seas off Mexico’s Yucatan Peninsula. Wade said he’d think about it but we both knew he wouldn’t alter his plans. Wade Blank liked to be where the action was. Many of the 1100 people who filled the ballroom at the Radisson Hotel on Sunday, Feb. 21, to say goodbye to their fallen comrade had accompanied him into battle. “If heaven isn’t accessible,” one of them warned, “God better watch out!” Wade founded the Atlantis Community in 1975 when he helped several disabled people move out of a nursing home and into their own apartments. Then he went on to help organize protests against RTD for not having wheelchairs lifts on its buses, a move that later led to the creation of ADAPT, which then stood for American Disabled for Accessible Public Transit (“The hard part is getting the acronym right,” he told me at the time.) I asked Tom Olin who was going to replace Wade. “No one,” he said. “Wade was into empowering disabled people. It’s a tribute to him that we’ll just keep on going.” Maybe. But it won’t be the same. People like Wade Blank don't come along very often. A writer for Westward once called Wade the nearest thing to a saint he had ever met. But Wade wasn’t perfect. After all, he was a Cleveland Browns’ fan. He had it so bad that on game day he’d call home to his folks in Ohio and have them put the phone next to the radio. He was president of the Cleveland Browns Fans in Exile Club. A small part of him died when Elway found Jackson in the end zone in the 1987 AFC Championship game. He was a devoted father who had a vasectomy reversed after he married Molly. He called me soon after the operation and bitched about having to lie still to prevent the tubes from severing again. It was the only time I knew him to stay still. The time spent was worth it. He loved Lincoln and Caitlan just as he loved Heather, his adopted daughter. He instilled in them special values. A neighbor recalled a time when she came home and observed Lincoln in front of his house directing some other kids. They weren't playing cowboy and Indian or war or any of the usual childhood games. They were playing rally. “All right,” Lincoln said. “United we stand, never apart.” Wade was a Presbyterian minister whose language would make a coal miner blush. I quoted him a lot on these pages over the past ten years or so but I never quoted him accurately. He used four letter words the way other people use punctuation. Someone made a TV movie about the events at Heritage Nursing Home and Wade said it was close to the truth. But the actor who played Wade didn’t quite capture his style. Wade wore his hair long and looked a little like a construction worker who took a wrong tum back in the 1960s. He once asked me if I wore ties. “I own one,” I said. “It keeps my sleeping bag rolled up.” He liked that. He hated ties. At the memorial service, those few men who showed up wearing ties were asked to remove them—out of respect. By then I owned a real tie. You can‘t go to a funeral in my small hometown without one. I left it at home for Wade. He didn’t have the eloquence of a Martin Luther King. He didn't need it. He wasn’t interested in grabbing the spotlight for himself. He taught his friends that their wheelchairs were a weapon and if they used them right, the whole world would take notice. RTD took notice. Denver became one of the first cities in the U.S. to adopt accessible public transit. Wade helped carry that message to countless other cities. He showed people how they could make a statement by going to jail and then he went out and raised the bail money. Eventually, in a parking lot in Atlanta, the feds gave in. Accessible public transit would be the law of the land. Wade wasn’t about to rest on his laurels. He turned his attention to an earlier cause. ADAPT changed the acronym to American Disabled for Attendant Programs Today and took on the nursing home industry. Wade knew that the disabled warriors who took on the federal government over accessible transit and got themselves arrested scores of times were strong enough to live in their own homes. He vowed to force the federal government to take money away from the nursing homes and make that dream a reality. That battle goes on. His friends at ADAPT are planning a memorial service in his honor in Washington, D.C. this May. At the same time, they’re going to make sure Bill Clinton honors his promises to provide funds for such attendant care. It's a fitting memorial but you can find plenty of monuments to Wade Blank in this country. There one at every street comer where there’s a curb cut and one on every bus equipped with a lift. And every time someone who is exploited because of a physical disability raises a fist in defiance and fights for his or her freedom and humanity, you’ll see Wade’s image in their eyes and his dream in their hearts. So long, Wade. If it’s really heaven, there won’t be a dress code. Written by Tom Schantz
ADAPT (618)
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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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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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.