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ADAPT (801)
The Washington Post, Metro Section 5/6/93 [Headline] The Disabled Plan to Show Washington They're Enabled—and Entitled By Liz Spayd, Washington Post Staff Writer Michael Auberger has shackled his wheelchair to city buses in Dallas. He has barricaded hotel entrances in San Francisco, and he has thrown himself in front of federal buildings, government officials, even oncoming traffic, all to draw attention to the rights of the disabled. This weekend, Auberger and hundreds of other activists from across the country plan to converge on Washington for a three-day blitz of demonstrations and marches in what promises to be the largest protest in history for people with disabilities. “We've written the letters, made the phone calls, had the meetings, and the bottom line is we're still being treated like second-class citizens." said Auberger, co-founder of ADAPT, an activist group that is spearheading the activities. “lf those channels don't work, you take to the streets." Organizers say the immediate purpose of the demonstrations is to demand that the federal government commit more money to helping disabled people live at home, instead of in institutions. At the same time, they want to continue the larger campaign for equal rights that produced the Americans With Disabilities Act, landmark legislation that went into effect last year. A march to the White House and a memorial service for Wade Blank, who was a leader in the movement, are expected to draw the largest crowds, both on Sunday. What may draw the most attention, however, are demonstrations on Monday and Tuesday, when protesters are expected to disrupt Washington with human blockades of buildings and streets. The exact places and times for those actions aren't being disclosed, but the targets could include public buildings, such as the Capitol and the White House, and some federal agencies. “We like to preserve the element of surprise," Auberger said. ADAPT — an acronym for American Disabled for Attendant Programs Today — has been staging protests every six months for more than a decade to fight what it says is the inhumane treatment of the disabled at nursing homes and other institutions. The group said it hopes to redirect 25 percent of the $23 billion in Medicaid funds currently budgeted for nursing homes into programs that would enable those with disabilities to have attendants in their homes. Currently, each state sets policy for how much Medicaid money will go toward attendant care programs, but there is no national policy. [Subheading] Disabled Activists Plan 3-Day Protest The strike on Washington is timed to pressure the Clinton administration into focusing on people with disabilities as part of its package of health care revisions, due out soon, activists said. "Clinton has talked about change and says he wants people to be able to live at home, but what we're looking for is more than just words," said Bob Kafka, an ADAPT organizer in Texas who plans to bring a caravan of about 50 people to Washington. In the past, ADAPT activists have drawn attention to their cause by employing sometimes sensational tactics. They have done belly crawls across hotel lobbies in San Francisco, clawing at passersby. They have taken sledgehammers to street curbs in Denver to protest sidewalks that were inaccessible to wheelchair users. And they have swarmed and blockaded buildings in virtually every major U.S. city; a demonstration in Chicago last spring forced the evacuation of more than 1,000 American Medical Association workers and created disruptions in a half-dozen other downtown facilities. Though such events have attracted media attention, some individuals and `groups` sympathetic to ADAPT’s cause question how effective they are in achieving the larger goal of attaining more money for in-home care. “We're sympathetic to their concerns, but we think the tactics they use bring attention to ADAPT and not the problem," said Claudia Askew, a spokeswoman for the American Health Care Association, which represents 11,000 nursing homes and is a frequent target of ADAPT protests. Disabled people also are somewhat splintered over whether ADAPT's approach helps or hurts their cause. “There are people with disabilities that think ADAPT is a little extreme," said Patrick McCurdy, vice president of Marylanders for Adequate Attendant Care, a group that generally relies on peaceful protests and negotiations to lobby for in-home care. McCurdy did defend ADAPT's technique as a necessary part of an overall approach to force change in a society that he said has long ignored the rights of disabled people. Few spoke up for those rights until recently, but the Americans With Disabilities Act provided new protections to disabled people and helped forge a civil rights movement among the 43 million people with physical or mental impairments. “A great byproduct of the [disabilities act] is the new sense of confidence and empowerment it has instilled within the disability community," said Justin Dart, chairman of the President's Committee on Employment of People with Disabilities, a small federal agency. “It's generated an enormous infusion of dignity and pride." Gregory Dougan, a District resident, said the renewed sense of hope is one reason he will take part in Sunday's march. Dougan, who was born with cerebral palsy and uses crutches, said he is fortunate to be able to live at home. But several of his friends live in institutions because they can't get the in-home care they need. And on Sunday, Dougan said, he will be thinking of them. "I'll be tired at the end of the day," he said, "but my crutches and me are going to that march."
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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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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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The Guardian, May 27,1992 Photo by Tom Olin: A disabled man dressed all in white (Tim Craven) lies on his back to crawl under a police barricade. Beside him a woman (Barbara Bounds) in a wheelchair leans toward him as if to support and protect him. She is facing the barricade and has a sign taped to the back of her chair that says "People Before Profits." Two police men lean over the barricade toward Tim and another sticks his arm in between them. Behind them are even more officers. On the near side of the barricade yet another officer stands, bending almost all the way forward toward Tim on the ground. Caption reads: Protesters in Chicago got our of their wheelchairs and lay down in front of the barricades, forcing employees to walk over them. Disabled militants bring hope to health reform By Mary Johnson Chicago-Hundreds of members and supporters of ADAPT (American Disabled for Attendant Programs Today) took to the streets here May 10-13 to continue their fight for in-home attendant services and to move the national health-Cate debate into the rights arena. The group is aiming to force the American Medical Association—whose headquarters are here—and the American Health Care Association, the nursing home lobby, to replace “home care" with "attendant services“ which consumers control “in the location and manner of our choice,“ says ADAPT. ADAPT, which under the name American Disabled for Accessible Public Transportation won the national fight for wheelchair lifts on buses, intend their street protests as the “flashpoint," says founder Wade Blank, for national health care reform. There is nothing medical about assistance to bathe, eat or dress, these activists charge. Target: Louis Sullivan Learning that Health and Human Services Secretary Louis Sullivan would be speaking at University of Chicago commencements on May 10, the 250-strong ADAPT contingent cancelled a Mother‘s Day march and stormed into the university‘s pavilion, planning to disrupt Sullivan's speech. Police and Secret Service agents promptly ejected them, but the group spent the afternoon handing leaflets to graduates‘ families. Sullivan has been a perennial ADAPT target for his refusal to meet with them to discuss Medicaid policy on nursing homes. The next day, ADAPT surrounded the HHS regional offices in downtown Chicago, managing to get up to 15th-floor offices before being blocked by police. Others in the group cordoned off exits, forcing building employees to climb over them, and at one point succeeded in getting department officials into the street to listen to the group‘s demands. Ten protesters were cited and released. On May 12, ADAPT moved to AMA headquarters, blocking adjacent streets and crawling up to bang on office windows. Police barricaded the doors, but protesters got our of their wheelchairs and piled themselves at barricades, forcing AMA employees to step over them when their offices shut down early. Police moved to arrest four people they believed to be in command. The four included Mike Auberger of Denver and Arthur Campbell of Louisville, Ky., who were released later in the day. Garnering media attention Though ADAPT planned to press state targets only on May 13, the state barricaded its downtown State of Illinois Building on the two days before. Guards locked wheelchair access doors and forced wheelchair users to submit to police escort on elevators. On May 12, Chicago ADAPT member Paulette Patterson sued the state over discriminatory denial of access. Though District judge Milton Shadur failed to grant a requested temporary restraining order, Patterson’s attorney, Matthew Cohen, said he had “no doubt the suit had an effect.” On May 13, ADAPT took over the building while city police squabbled with state police over jurisdiction and mostly kept their hands off protesters. Longtime Chicago activists noted ADAPT‘s success in garnering media attention. Chicago Lawyers Guild member Ora Schub said ADAPT‘s protests got more coverage than Gulf war demonstrations in the city — even when antiwar protesters shut down Lake Shore Drive. There seems little question ADAPT has begun to have an impact beyond disability rights. As one of the only groups to take the health reform issue into the streets, ADAPT, says Blank, sees its role “as focusing the debate on a bigger political issue” within health-care reform: services as a legal right. “What the disability rights movement can do is humanize society,” he says. Tennessee ADAPT recently forced the hospital power structure there to accept a state financing fee that will fully fund Medicaid (see sidebar). Lawyer Gordon Bonnyman, who was involved in the Tennessee campaign, remembers a “poverty advocate friend" sending him a clipping about an ADAPT protest in Orlando, Fla., in 1990, when the group first took on the American Health Care Association over the attendant services issue. He and his friend “were despairing about health reform," he said, “asking ourselves when the people who were really affected were going to begin to influence the discussion. "l said, ‘l just don‘t see that ever happening until people are willing to stage some direct actions,‘ " Bonnyman recalls. “Then she sent me that clipping from ADAPT's Orlando action and she said, ‘Here are the folks who could do that.'" “My response at that time was, ‘That’s nice, but how many people is that?‘ I now think: ‘Enough.' ADAPT really does have the ability to have an impact nationally on health care issues-far beyond their own issue of personal attendant services." The group plans similar actions in San Francisco this fall. Second, sidebar, article inserted on this page: Saving Medicaid in Tenn Six people in wheelchairs moved swiftly a cross across the drive-way of the Tennessee Health Care Association in Nashville on March 31. Chaining themselves together, the small band waited for members of the Tennessee Hospital Association to come out of their meeting. It was a classic ADAPT action. This time ADAPT was leading a coalition of health care reformers that would force the state‘s powerful hospital lobby to drop its opposition to a state licensing fee intended to prevent a $1.1 billion loss in federal Medicaid funds. Tennessee pioneered the concept of leveraging matching federal Medicaid funds by levying a state financing fee against hospitals that took Medicaid patients. With its 70-30 match, the state took the $300 million collected from participating hospitals to obtain another $700 million in federal matching funds. With that tactic, Tennessee was fully funding its Medicaid program and feeling no financial crisis. By 1991 it was in use in 37 states, with many reporting similar success. The federal government, alarmed at having to pay out increased Medicaid funds to stares that used this method, devised a plan to derail it. A little-publicized 1991 law made such licensing fees illegal unless levied against all hospitals equally. It counted on opposition from hospitals that took no Medicaid patients (and therefore had no reason to agree to the fees) to fight state passage of licensing fee bills. That opposition was swift in coming in Tennessee. The state is home to Hospital Corporation of America and HealthTrust, two of the nation's largest hospital chains, and numerous other hospitals. The Tennessee Hospital Association, of which Hospital Corporation of America is a powerful member, opposed the fee. A state bill to extend the fee to all hospitals was virtually dead, said Tony Garr, head of the Tennessee Health Care Campaign, until ADAPT of Tennessee, led by organizer Diane Coleman, got involved. “The only way we could bring attention to the issue was to hit the streets,” said Garr. “ADAPT played a very important role" in helping other groups in the Tennessee Health Care Campaign “move to direct action,” said Gordon Bonnyman, a lawyer who has worked with Medicaid issues in Tennessee. Beginning in January, Coleman and Tennessee ADAPT members staged weekly actions, targeting the large hospitals as villains who were destroying the state’s Medicaid program. The first week a group of nearly 200 people, headed by ADAPT, marched to the Hospital Association's offices. The next week the group staged a protest in front of Baptist Hospital, which opposed the fee. The group hung a sign asking “Are you Christian?" on the hospital administrator's portrait. The group‘s fifth action targeted Thomas Frist, who heads Hospital Corporation of America. “We had a small casket, with dollar bills draped over it, and a sign that read, “Thomas Frist, how many must die for your $1.235 million in annual cash compensation?” said Coleman. The protests had the desired effect. Frist, reportedly upset by the negative publicity, capitulated the day the group surged on Health Care Association headquarters with the cross and withdrew his corp0ration’s opposition to the fee—reportedly urging legislators to vote swiftly to pass the law to avoid more unfavorable publicity. “There have been Medicaid cuts for the last 15 years in this country, and they have gone mostly unreported," said Bonnyman. “ADAPT galvanized people. Without them, the whole thing would have gone down the toilet." M.J.
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The Denver Post August 29, 1976 PHOTO: A woman (Carolyn Finell) sits in her wheelchair turned sideways, relaxed, facing the camera. Her arm is slung over the backrest, and she is beaming. New Key Fulfills Residents' Dreams (continued from page 36) and the other four Atlantis residents to go out on their own without state support for a proposal advanced by Atlantis. That proposal was presented in June to Henry A. Foley, director of the Colorado Social Services Department. Foley's response was enthusiastic according to Wade Blank and Glen Kopp, co-directors at Atlantis. And as a result, Foley set up a pilot project which will go until the end of 1977. Simply stated, the project involves Atlantis'creation of an expanded staff of attendants to provide necessary services to the disabled in their apartments and homes as well as at Atlantis. And the state medicaid fund will pick up the difference between government cost for attendant services and the amount of funds that actually are expended to provide the disabled with necessary care as certified by a physician. Blank explained that the government pays an average of $575 monthly for a severely disabled young adult living in a nursing home. If the disabled person moves into his own apartment he receives $186?[text is blury] monthly from various governmental sources to pay for his rent, food, telephone and personal needs. And a county social services department may provide an additional $40 to $217 monthly to the disabled person for attendant services. But quite often, Blank said, even the maximum of $217 monthly doesn't cover the attendant services needed. And qualified attendants may not always be available, he noted. The cooperative program between Atlantis and the state might remedy those shortcomings and might cut government expenditures for the disabled substantially, Blank said. If the program is successful, Blank said, it could be expanded statewide for the disabled. Eventually, he added, the program might be extended to the state's elderly persons to keep them in their own homes and apartments, rather than placing them in a facility outside the home. Equally elated over the program is Mary Joyce, who is Jeannie's mother. Mrs. Joyce and her husband, Joseph, came to Denver last week from their home in Scarborough, Maine and were with Jeannie when she first viewed her apartment. “It's a pretty wonderful step" Mrs. Joyce said as she watched her daughter move in her wheelchair through the apartment. "We can't believe the strides she'd made in the last two years with her determination to live on her own and take care of herself." To two other Atlantis residents, George Roberts and Don Clubb, the move to their own apartment is "a pretty big change." Born with cerebral palsy, George, now 28, was left as an infant at the door of an adoption agency in southern Colorado. George then was placed in a state home and training school where he remained for 21 years - a period he describes as "all my life." He also spent more than four years in a nursing home before being accepted at Atlantis in June 1975. Don, who soon will be 20, lost both legs as the result of a slide down a mountainside when he was six years old. For about 10 years, Don was in state home and training schools. And for the past five years, he has been in a nursing home. He, too, is confined to a wheelchair. Last week, as George and Don viewed the apartment they will share in north Denver, they seemed to invest the nearly empty rooms with an almost magical air. "It's wonderful," George said over and over. Carefully, he moved his wheelchair up to the electric stove and inspected the oven. In the bedroom, he was jubilent as he examined the heating and air-conditioning controls. And almost reverently, he opened and closed the sliding doors of a large bedroom closed. Don spoke quietly but with no less enthusiasm. "It's a very nice place - the first place of my own," he said. He smiled in the direction of the outdoor pool and said he swam very well and would teach George. Also preparing to move into an apartment they will share in south Denver are two other Atlantis residents, Carolyn Finnell, 33 and Nancy Anderson, 31. When she was 21, Nancy underwent surgery for removal of a brain tumor. For the next nine years, Nancy just sat in Denver area nursing homes unable to talk or walk, her body partially paralyzed. At that time, doctors said Nancy would be confined to nursing homes for the rest of her life and would never walk again. But since moving to Atlantis last summer, Nancy has been striving diligently in therapy sessions at Denver General Hospital. Working through the pain and the fatigue, she has learned to walk for up to 300 yards with the aid of a walker. And she has expanded her vocabulary to almost 10 words and is using a word machine in the new process of learning others. For Carolyn Finnell, who was born with cerebral palsy, there has been no easy or direct road to independent living. After finishing the ninth grade, Carolyn wasn't particularly encouraged to continue. But she was convinced and convinced others, that she was capable of further education. She obtained her GED, or general equivalency diploma, which is equivalent to a high school diploma. And she earned a degree in journalism at Metropolitan State College. But then there were the leaden days - four years in nursing homes "which didn't work out." Afterward, Carolyn came to Atlantis and her hope was reborn. Now, Carolyn is working in the Atlantis planning office and preparing plans for the education of the disabled. In her quarters at Atlantis last week, Carolyn said it was painful to leave so many behind when she left the nursing home. "But as we move out of Atlantis, it will make it possible for others to move in - and they never thought that was possible," she added. Looking to the future, Carolyn said she would like to return to school to obtain training so that she can tutor disabled persons who have never had an education. "There's a whole generation of disabled people who have been denied an education," she said. Carolyn stressed that she wasn't going to "wage a war against nursing homes I'm willing to live and let live." But she obviously was emotionally affected as she said, "I never realized until I got out of a nursing home that for a young person, it's a living death: You really have nothing to live for...nothing to do but just sit. Many disabled persons, Carolyn noted, attend Opportunity School and Boettcher School in Denver. "But I know for myself," she said, "I didn't have any faith in my ability to work." "But I've been involved in Atlantis planning," she said as a smile swept across her face and she threw out her arms, embracing the air. "I've gained faith in my ability and I'm started to get ambitious." Her next words came slowly, with triumphal emphasis: "I....just....feel....alive!"
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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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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? [Headline] Atlantis Residents Train for Hot Line Handicapped persons residing in the Atlantis Community in Denver are being trained to man a telephone hot line to respond to the emergency needs of all the disabled in Denver. Wade Blank, Atlantis co-director, said the hot line -- soon to be put into service -- is being funded by the Colorado Vocational Rehabilitation Division. [Subheading] FURNITURE GIVEN In other developments at Atlantis, the Denver Hilton Hotel ls donating furniture for the apartments in which the handicapped persons reside at the Las Casitas Public Housing Development here. The furniture is being made available by the hotel as the result of remodeling of some of the Hilton’s rooms, Blank noted. Atlantis ls a nonprofit organization which began operations last spring to offer the handicapped the opportunity to live in apartments so that they might attempt to realize their full potential. Blank also said the IBM Corp. in Denver, through its staff member Burt Lipell, donated a new washer and dryer to Atlantis. This equipment is operated by George Roberts, one of the Atlantis residents. The Denver City Council, Blank said, is being asked to appropriate $2,000 for installation of sidewalks among all the Atlantis apartments before winter comes. Atlantis has received three new electric wheel chairs and one manual chair through the efforts of Dr. James Syner of Medicaid’s special Medical Equipment division. [Subheading] COMMUNICATIONS A communications system also ls being planned among each of the apartments at Atlantis. And one of Atlantis’ most severely disabled residents is the coordinator of a wheel chair van which Atlantis leases from this resident, Blank said. This project also is funded by the rehabilitation division. Five Atlantis residents are attending local schools or colleges - one resident attending Metropolitan State College, one at Red Rocks School, two at Boettcher School and one at Opportunity School. PHOTO on bottom: Side view of a man's (Wade Blank) head, with below the shoulder long straight blondish hair, clean shaven, and wearing round glasses and a dark shirt. Caption reads: Wade Blank, The Disabled. Next article on right Disabled Helped by Wirth's Compassion To the Denver Post: IN A RECENT LETTER to the Forum (April 27), Rita Jackson complained that Representative's Wirth office is not accessible to the handicapped "via the front door." A partial truth can be a big lie, and the whole truth should be told. It is true that the front door is hard to negotiate in a wheelchair, but the office building is accessible from the rear, which is where the parking lot is located. Here, as in many office buildings, the "rear" is the normal, preferred building entrance, and as no "second class" connotations. What is more important, Tim Wirth is not the kind of ivory tower legislator who hides in his office and expects the world, disabled included, to bring its problems to him. Tim Wirth constantly leaves his office, goes out into the community, and talks to the people about their problems in their own environment. The disabled have often been helped by his blend of energy and compassion. Atlantis has found that Tim Wirth's heart and mind are always accessible, and that is what counts. Atlantis' Residents - Carolyn Finnell, Darrell Clark, Jackie Nielsen, Jean Joyce, Delbert Spotts, Jim Lundvall, Gary Van Lake, George Roberts, Will Cornelison, Alex Chavez Denver AD in a box: The Perfect Gift... "Companions" A book of unusual poetry by Michael Smith. Available soon at local book stores (All proceeds, after printing and selling costs, will go to the Atlantis Community for the handicapped in Denver.) PHOTO: Close-up of a man (Michael Smith) with long hair and dark mustache and beard looking up soulfully from a bed. Someone, mostly out of the picture, is looking down at him.
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Rocky Mountain News Mon., March 22, 1976, Denver, Colo. Banner Headline for story. PHOTO on left of headline: Head and shoulders shot of a young man (Michael Smith) with dark hair, pulled back in ponytail, dark beard and moustache. His head is tilted slightly to one side and he is smiling a bit. Caption reads: Michael Smith. He had a dream; He prayed that He would walk again someday. But someday never came. [Headline] Late poet a plaintiff in nursing home case Page 5 [Banner headline in ADAPT 44. Story starts here in ADAPT 45 and continues in ADAPT 46, but the entire text is included here for ease of reading.] Late poet was plaintiff in nursing home lawsuit By Jonathan Dedmon, News Staff Michael Smith was a poet. A victim of muscular dystrophy, Michael wasn't able to hold a pen, however. Weighing less than 100 pounds, one of the few physical tasks he was able to perform was to turn the pages of the many books he read. He would keep stanzas of poetry stored in his head and wait for friends or staff at the Heritage House Nursing Home in Lakewood where he lived to have free time so he could dictate his verse. A former aide remembers when she would be busy caring for patients and Mike would say, "Got to write." "We'd say, ‘Sorry, Mike‘ Don‘t have time.‘ A lot of his poetry was lost." In addition to being a poet, Mike also was an idealist. Because of what friends say was that idealism, in spite of the fact Mike died in October at the age of 21, he lives on not only in a published book of his poems but also in a giant legal battle in U.S. District Court. THE BATTLE COULD have a large impact on the care of handicapped patients in nursing homes throughout the country since it attacks the entire method of delivering health care. The suit, in which Mike was an original plaintiff, charges nursing home patients routinely are being denied their rights and even fundamental medical care, contrary to the wishes of Congress in its Medicaid law. U.S. Judge Richard Matsch currently is considering how much jurisdiction the federal court has in the case. But already a number of patients and nursing home employees have come forward with a series of affidavits which are a litany of patient abuse. The charges are leveled primarily against the former Heritage House Nursing Center in Lakewood, which since has been sold and is operating under new management and a new name. The suit’s allegations range from patients not having the colostomy bags changed to failure of the staff to provide any rehabilitation efforts. THE NURSING HOME attorney and a part owner deny the charges which are contained in a half dozen affidavits filed with the court. Pam Malpass worked as an aide from August 1974 to February of last year. Here are parts of her affidavit: “People were punished sometimes by having their wheelchairs turned off, cut their mobility (sic). Wheelchairs at Heritage House were constantly in disrepair and falling apart leading to weekly crises. Paul Brae, a Heritage House resident, fell out of his chair because it was falling apart and crawled under his bed and said he was (sic) [not] going to come out until he got a new wheelchair [cut off] we procured for him with some difficulty. Bowel programs for a number of residents weren't maintained properly resulting in infections. Colostomies and catheters weren't cleaned properly or regularly also resulting in infections for a number of patients. I also often observed that colostomy bags and catheters improperly were connected to the people that needed them with the result that they leaked and backed up." Michael Ray, an orderly from May 1974 to January of last year, said in his affidavit that on at least a dozen occasions, he made marks with a felt-tipped pen on patients’ dressings on open bed sores to make sure they were being changed twice a day as they should have been. “Each time when I looked, a day later, sometimes longer, the dressings I had put on with the markings were still there. The unclean sores lead to more serious complications and infections. During the six months I was working at Heritage House I never saw a doctor." FAILURE TO MAINTAIN a bowel program can lead to bowel poisoning and even to surgery. Mark Biles was impacted for three weeks while I was there necessitating an elaborate program of oral laxatives, suppositories and enemas to give him relief. The owners and the administrators always met suggestions or requests from the staff on behalf of patients residing there with the remark that they cost too much or if you don't like it why don't you get the hell out. “The only time that Heritage House was concemed about the cleanliness of the home was when the state inspection team announced it would appear.” ACCORDING TO JOHN Holland, who heads a team of Legal Aid attorneys working on the case, “We're saying that when Congress established Medicaid, it intended to create a real system of delivering high quality medical care to poor people, not a system that couldn't deliver for a significant number. The benefits aren't getting there.” A particular target is the U.S. Department of Health, Education and Welfare (HEW), which is charged with making sure nursing homes comply with federal standards to insure high quality health care. Legal Aid, which is reluctant to say too much about the case because it is pending, feels HEW merely established a “paper compliance" system whereas Congress wanted a compliance system to “see benefits and rights delivered and prevent the kinds of injuries and deprivations of rights alleged in the suit." THE SUIT NAMES every rung in the bureaucracy which participates in the provision of nursing home care, ranging from the owners of Heritage House to the state Department of Social Services and HEW. In addition to asking for monetary damages, the suit also seeks an injunction prohibiting deprivation of medical care and patient rights. The rights include proper medical and psychosocial treatment and care, the right to seek legal counsel and manage personal monies, the right to voice grievances and the right to adequate notice and opportunity for a hearing prior to transfer, among others. It also asks HEW to come up with a decent system of enforcing compliance with such federal laws. Because of the complex nature of the suit, it already has become a “paper nightmare," according to Holland, and a “paper war,“ according to Heritage House attomey Bob Eberhardt. THE PLEADINGS STAND some two feet high and the court hasn't decided jurisdiction yet. Perhaps one of the most damning affidavits filed so far is by Janice Jacobson, a former administrator of Heritage House. “Heritage House was filthy, cockroaches had infested the entire home (with the exception of the kitchen). The walls wene very dirty and an odor of urine permeated the air. “Flies were everywhere. They present a particular problem to those persons who are bedfast or paralyzed because they can't swat the flies from their faces or bodies. “Temperature controls were broken. Zone control valves which control the room temperature were corroded either open or shut so that the rooms were unbearably hot or cold. “INDIVIDUAL CARE PLANS are either totally inadequate or not existent." “Patients who had to be fed were degraded by impatient orderlies who constantly hurried them along faster than they could comfortably go on the pretext of there not being enough time to feed them." “Staff would get angry with people for having something wrong with them like uncontrolled bowels." “Lots of patients would never get dressed every day. The staff didn’t like to take the time to dress them. By keeping patients undressed a general institutional goal of keeping them in bed and more inactive was more readily achieved. “It was not uncommon for people who did get dressed to not be undressed but rather to sleep in their clothes. l received complaints from one family that one of the male patients there had the same clothes on for weeks. They knew because the same spot was on his shirt for three weeks." “Visitors and relatives often complained that their relatives or friends hadn't received baths or showers for weeks." “It was reported to me by nursing staff the director of nursing believed physical correction of resident misconduct was permissible and that she employed a technique of having persons she decided were misbehaving placed in cold showers." “The call button system at Heritage House often wasn't working and when it was, working staff very often didn't respond to calls. There was one incident while I was there where family members called in and said they heard their mother was dead. The nurse had to go down to the room to see if this was so. The woman had been dead for several hours." Mrs. Jacobson says, in her view, Heritage House was “warehousing people, not delivering health care." "Residents had no more rights than children and the official view was that the staff knew what was best for them and if the patients didn't think we were doing everything right or what they needed they could just leave." Management expressed this view often. “PATIENTS WERE KEPT tractable and quiescent by intimidation and medication. Encouraging people to be as normal as they can be is the essence of good nursing care. It was not done at Heritage House.“ In response, Heritage House attorney Eberhardt said the accusations are “totally untrue and completely without foundation. You can't cross-examine affidavits. The truth will come out in the trial. “ He also points to the affidavit of Allen Buckingham, regional director of the HEW office of Long Term Care Standards Enforcement. Buckingham stated his office never received any complaints concerning the allegations. Oscar Gross, former part owner and also a defendant, said he never would have been able to keep his license if the allegations were true. In addition, he said his home was the only home to provide a wing specifically for handicapped youths and he even received two awards from the wing. “We tried to do our best," he said. He also offered to take the News to the home to interview patients about conditions. He said his wife still visits patients. Gross sold the home in February and it now is under new management. Gross said he sold the home simply as “a business transaction.“ Before Michael Smith died last year, he testified at one hearing on the case. “He already felt he had won," recalled Mrs. Malpass.
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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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The Sunday Denver Post - August 29, 1976 [This article in continued in ADAPT 37, but the entire text is included here for easier reading] [Headline] Denver and the West Denver Post Photos by Ernie Leyba, Photo 1 (top left): Two hands gently hold a key. Photo 2 (on right): A young woman (Jeannie Joyce) in a manual wheelchair sits next to a floor lamp, and beside her kneels an older woman (Mary Joyce). Jeannie is looking up and her mother is looking forward to the right. Both are absolutely beaming. Captions (in middle) read: A key, left to a new apartment is a thing of joy to Jeannie Joyce, in wheel chair being hugged, at right, by her mother, Mrs. Mary Joyce, after Miss Joyce moved into her new apartment. [Subheading] Apartment Key Fulfills Dream for Five Atlantis Residents by Fred Gillies “My key!" Jeannie Joyce cried out exultantly, cupping a door key almost prayerfully in her hands and moving in her wheelchair room to room in the small apartment in south Denver. Jeannie's eyes sparkled and at times misted as she turned the wheelchair in one direction and then another. "It‘s my house," murmured Jeannie, 25, who has been confined to a wheelchair most of her life by a form of muscular dystrophy. Jeannie and four other residents of the Atlantis Community for the handicapped in Denver are taking a major step. They are moving from Atlantis into their own apartments as part of a pilot project that may become a model for the state. The move is supported by state officials who see it as an exciting extension of the Atlantis goal - making disabled persons more independent and providing a stimulating atmosphere in which they can realize their full potential. To Jeannie and the four other Atlantis residents, this move to their own apartment is “a dream come true." Jeannie shouted with joy last week when she saw her apartment - the first she has ever had. "I love it!" she said "it fits me because it's a little place and I'm a little person." But the road to this apartment was a long one. After living at home for her first 21 years, Jeannie entered a nursing home where she remained for more than three years. At the nursing home there was no particular program for Jeannie. Her only work was at a sheltered workshop where she counted fishhooks and placed them in packages and performed other simple and undemanding tasks. Slightly more than a year ago, Jeannie was among eight disabled persons who moved from Denver area nursing homes and became charter residents at the Atlantis Community, 2965 W. 11th Ave. At Atlantis, Jeannie began working as an operator on the telephone hot line which helps Atlantis residents and other disabled persons in metropolitan Denver find the services they need. In time, Jeannie was named supervisor of the hotline. Newly established in her own apartment, Jeannie will continue to work on the hot line at Atlantis. This is the way she always wanted it - her own home, a meaningful job and a wide-open future. But Atlantis officials have stressed that it wouldn't have been possible for Jeannie and the other four Atlantis residents to go out on their own without state support for a proposal advanced by Atlantis. That proposal was presented in June to Henry A. Foley, director of the Colorado Social Services Department. Foley's response was enthusiastic according to Wade Blank and Glen Kopp, codirectors at Atlantis. And as a result, Foley set up a pilot project which will go until the end of 1977. Simply stated, the project involves Atlantis' creation of an expanded staff of attendants to provide necessary services to the disabled in their apartments and homes as well as at Atlantis. And the state Medicaid fund will pick up the difference between government cost for attendant services and the amount of funds that actually are expended to provide the disabled with necessary care as certified by a physician. Blank explained that the government pays an average of $575 monthly for a severely disabled young adult living in a nursing home. If the disabled person moves into his own apartment he receives $186?[text is blurry] monthly from various governmental sources to pay for his rent, food, telephone and personal needs. And a county social services department may provide an additional $40 to $217 monthly to the disabled person for attendant services. But quite often, Blank said, even the maximum of $217 monthly doesn't cover the attendant services needed. And qualified attendants may not always be available, he noted. The cooperative program between Atlantis and the state might remedy those shortcomings and might cut government expenditures for the disabled substantially, Blank said. If the program is successful, Blank said, it could be expanded statewide for the disabled. Eventually, he added, the program might be extended to the state's elderly persons to keep them in their own homes and apartments, rather than placing them in a facility outside the home. Equally elated over the program is Mary Joyce, who is Jeannie's mother. Mrs. Joyce and her husband, Joseph, came to Denver last week from their home in Scarborough, Maine and were with Jeannie when she first viewed her apartment. “It's a pretty wonderful step" Mrs. Joyce said as she watched her daughter move in her wheelchair through the apartment. "We can't believe the strides she's made in the last two years with her determination to live on her own and take care of herself." To two other Atlantis residents, George Roberts and Don Clubb, the move to their own apartment is "a pretty big change." Born with cerebral palsy, George, now 28, was left as an infant at the door of an adoption agency in southern Colorado. George then was placed in a state home and training school where he remained for 21 years - a period he describes as "all my life." He also spent more than four years in a nursing home before being accepted at Atlantis in June 1975. Don, who soon will be 20, lost both legs as the result of a slide down a mountainside when he was six years old. For about 10 years, Don was in state home and training schools. And for the past five years, he has been in a nursing home. He, too, is confined to a wheelchair. Last week, as George and Don viewed the apartment they will share in north Denver, they seemed to invest the nearly empty rooms with an almost magical air. "It's wonderful," George said over and over. Carefully, he moved his wheelchair up to the electric stove and inspected the oven. In the bedroom, he was jubilant as he examined the heating and air-conditioning controls. And almost reverently, he opened and closed the sliding doors of a large bedroom closed. Don spoke quietly but with no less enthusiasm. "It's a very nice place - the first place of my own," he said. He smiled in the direction of the outdoor pool and said he swam very well and would teach George. Also preparing to move into an apartment they will share in south Denver are two other Atlantis residents, Carolyn Finnell, 33 and Nancy Anderson, 31. When she was 21, Nancy underwent surgery for removal of a brain tumor. For the next nine years, Nancy just sat in Denver area nursing homes unable to talk or walk, her body partially paralyzed. At that time, doctors said Nancy would be confined to nursing homes for the rest of her life and would never walk again. But since moving to Atlantis last summer, Nancy has been striving diligently in therapy sessions at Denver General Hospital. Working through the pain and the fatigue, she has learned to walk for up to 300 yards with the aid of a walker. And she has expanded her vocabulary to almost 10 words and is using a word machine in the new process of learning others. For Carolyn Finnell, who was born with cerebral palsy, there has been no easy or direct road to independent living. After finishing the ninth grade, Carolyn wasn't particularly encouraged to continue. But she was convinced and convinced others, that she was capable of further education. She obtained her GED, or general equivalency diploma, which is equivalent to a high school diploma. And she earned a degree in journalism at Metropolitan State College. But then there were the leaden days - four years in nursing homes "which didn't work out." Afterward, Carolyn came to Atlantis and her hope was reborn. Now, Carolyn is working in the Atlantis planning office and preparing plans for the education of the disabled. In her quarters at Atlantis last week, Carolyn said it was painful to leave so many behind when she left the nursing home. "But as we move out of Atlantis, it will make it possible for others to move in - and they never thought that was possible," she added. Looking to the future, Carolyn said she would like to return to school to obtain training so that she can tutor disabled persons who have never had an education. "There's a whole generation of disabled people who have been denied an education," she said. Carolyn stressed that she wasn't going to "wage a war against nursing homes I'm willing to live and let live." But she obviously was emotionally affected as she said, "I never realized until I got out of a nursing home that for a young person, it's a living death: You really have nothing to live for...nothing to do but just sit. Many disabled persons, Carolyn noted, attend Opportunity School and Boettcher School in Denver. "But I know for myself," she said, "I didn't have any faith in my ability to work." "But I've been involved in Atlantis planning," she said as a smile swept across her face and she threw out her arms, embracing the air. "I've gained faith in my ability and I'm started to get ambitious." Her next words came slowly, with triumphal emphasis: "I....just....feel....alive!" PHOTO: A woman (Carolyn Finnell) sits in her wheelchair. She is turned sideways, relaxed, facing the camera. Her arm is slung over the backrest, and she is beaming.