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- ADAPT (34)
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. - ADAPT (31)
[Headline] Heritage House Sued: Funds Violations Charged by Linda Cayton Attorneys for the Senior Citizens Law Center have filed suit in U.S. District Court charging the administrator and owners of Heritage House Nursing Care Center in Lakewood with illegally misappropriating and withholding personal needs money of patients, inadequate care, and intimidating and threatening residents who seek legal counsel. Officials of the Department of Health, Education and Welfare; Colorado Department of Social Services; and the Colorado Board of Health were also named as defendants for failure to enforce federal and state regulations governing nursing homes. The civil action represents a class action suit prompted by complaints received by the Legal Aid Society from the chief plaintiff, Patrick Smith, a 20 year old multiple sclerosis patient. Smith, a Medicaid patient, receives $25 per month from the Federal Supplemental Security Income (SSI) program to cover his personal needs. Early this year, Smith suffered a total respiratory breakdown and entered a local hospital. According to facts set forth in the lawsuit, while Smith was hospitalized, Thomas O'Halloran, administrator of Heritage House, instructed a bookkeeper to forge an “x” on Smith's SSI check. The check was endorsed, cashed, and credited to Smith's personal needs account. When Smith returned to the nursing home, O'Halloran informed him that his SSI check was unavailable. Later, Smith was informed that his check had been endorsed and cashed. Smith filed a complaint with the Legal Aid Society concerning the forgery. When attorneys informed O'Halloran of the complaint, he confronted Smith, calling him "despicable" and “ungrateful," and issued a week's eviction notice to him. Later, Smith's calls for nursing assistance went unanswered for some time and he was denied access to his medical files. In April, O’Halloran met with Assistant Colorado Attorney General Tony Accetta. According to Accetta's signed affidavit, O’Halloran admitted authorizing the forgery of Smith's signature in the belief that Smith would die before returning to Heritage House. O'Halloran also admitted circulating a memo stating that he did not “welcome harassment and threats from the legal profession” and explained that he threatened Smith with eviction because he did not want lawyers going through patients’ records. The suit charges O’Halloran and the owners of Heritage House with violating the Fifth and Fourteenth Amendments to the U.S. Constitution by depriving patients of the rights to manage their monies, to seek legal counsel, to adequate and proper medical and psychosocial treatment and care, to timely and adequate notice and opportunity for a hearing prior to a transfer from the facility and to access to their medical files. Casper Weinberger, Secretary of the Department of Health, Education and Welfare; Henry G. Foley, Executive Director of the Colorado Department of Social Services; and Edward Dreyfus, Director of the Colorado Department of Health were charged in the lawsuit with non-enforcement of the U.S. Constitution and those laws applicable to skilled nursing facilities. According to federal regulations, a nursing home patient should either manage his personal financial affairs or be given a quarterly accounting of financial transactions made on his behalf; be encouraged to exercise his rights as a patient and as a citizen with the right to voice grievances and remain free from reprisals; and be transferred or discharged only for medical reasons, or for his welfare, and be given advance notice of the transfer. State officials are charged with refusing to revoke or enforce Medicaid agreements or licenses of nursing homes that violate patients’ civil rights or provide inadequate care; inspecting nursing homes only once a year and giving prior notice of those inspections to the facility; and refusing to establish procedures for the management of patients’ personal needs money. Owners named in the civil action are Oscar Gross and H. Sol Cersonsky, general partners of Heritage House Associates; and Jack D. Feuer, a limited partner of Heritage House. Also named are limited partners M.J. Beitscher, Harry Berman, Bernard Ceronsky, Louis L. Fox, Howard D. Greyber, Martin Gross, Soloman Gross, Arnold Heller, Barry B. Melnick, Manuel Nash, and Johnny M. Weinreich. - ADAPT (27)
[Headline] Handicapped Pin Hope on Atlantis By Sharon Sherman Denver Post Staff Writer The word "activist' once scared a group of young Handicapped Denverites. But after almost two years of wheeling themselves onto picket lines, sitting through meetings with government agencies and speaking out about the problems of being shunted out of the mainstream of society, they agree that the term activist describes what they have become. And they are proud of it. "At least we're actively trying to do what we can instead of sitting back and wishing', is the way Carolyn Finnell, 31, sees the new role of many physically handicapped young people. [Subheading] Buses for Handicapped Carolyn, and others like her in the handicapped community, helped convince the Regional Transportation District to begin adding buses equipped for the handicapped. They have testified at various hearings about problems of the disabled. [TEXT UNREADABLE] They are among the principal planners of the Atlantis Community, a project which would offer the physically handicapped many types of residential living arrangements with services they need available nearby. Carolyn, who has cerebral play which confines her to a wheelchair and distorts her speech, said it was hard to "face speaking out" to rooms full of strangers, but that living with other young adults at Heritage House Nursing Home youth wing has "brought me out a lot." [Subheading] Stayed Inside Shell If Mike Smith, 20, had had his way, he would have stayed inside his shell of poetry writing, reading, and discussing philosophy and listening to music. "I don't like being in politics, but it seems that's the way we have to go,'' Mike explained. " I guess you have to lose a little to get a lot.'' Linda Chism, 27, believes that for the first time, there are enough young disabled people ready and willing to push themselves forward, to speak out, that there is a chance of changing the entire lifestyle of the handicapped. For Mike Smith, those changes may come too late to be enjoyed. [Subheading] Depressed, Angry Mike has muscular dystrophy, a fatal disease. He has spent the past five years in nursing homes, living in one where, at 15, he was punished for breaking rules and being sent to the locked ward for 24 hours at a time. Finally, lonely for friends his own age, depressed at watching his elderly roommate die of cancer, angry at rules which confined him to the small world of the nursing home, Mike attempted suicide. "Luckily, I had no idea how to go about it," he remembers. "I took 20 bowel softener pills and instead of dying just created an incredible mess." For Mike, as for Carolyn, the youth wing at Heritage House is infinitely better than what they had before. But, Mike points out, once the first door that closes any human being away from the rest of the world is opened, that human being will see other doors to open. So it has been for Carolyn, who counted fishhooks for five years in a sheltered workshop before someone recognized her potential. [Subheading] Wants Meaningful Job Now, with a degree in journalism from Community College behind her, Carolyn wants some other things she's not getting out of life. Things like a meaningful job, an apartment of her own where she won't have to keep half her belongings in boxes under the bed, the privacy to entertain friends. "I'm probably living a more active life than I ever have before", she said, explaining that she now edits the youth-wing newsletter and is learning braille so she can tutor blind students. Having come so far, Carolyn's not willing to stop here. Neither is Linda Chism, who has had crippling rheumatoid arthritis for 20 years. Linda has "suffered a lot of surgery and a lot of hard, hard therapy" to become fairly mobile. She has taken three years of courses in biology and psychology at the University of Colorado. She was even offered a full-time job. [Subheading] System Inflexible But the system doesn't allow even the disabled who are capable of supporting themselves to do so, Linda said. If she was paid even minimum wage, she would earn too much and would lose her Social Security benefits. But it would take much more than a minimum wage salary to pay living expenses plus the $150 a month it would cost her to get to work and back. In addition, she would no longer receive Medicaid assistance, and medical bills for someone in Linda's condition are enormous. "Who's going to pay a beginner with no experience that much money?" she asked. [Subheading] Innovative Projects For now, for these and other physically handicapped young adults, the boundaries of their world still don't go far beyond the nursing home walls. But those boundaries will expand dramatically if the young disabled can find support for two innovative projects. One is Project Normalization, a one year pilot study to find out what services young people in nursing homes need to live as normal a life as possible. The project would be conducted at the young wing of Heritage House and is estimated to cost $241,872. The state Department of Social Services has suggested that the pilot project be run by the Department of Physical Medicine of the University of Colorado Medical School. Members of the department now are investigating that possibility. [Subheading] Denied Normal Life "Disabled people are often denied any resemblance of a normal life," the project introduction says. "Because of the segregation they encounter, and the sheltered nature of their early lives, when they reach young adulthood they are incapable of functioning satisfactorily in society and so are banished to nursing homes where the repressive, nonstimulating and socially undemanding environment serves only to multiply their social inadequacies and further depersonalize them. As its creators see it, Project Normalization would begin to to prepare handicapped young adults for the kind of independent living they hope Atlantis will someday offer. [Subheading] Create a Community Atlantis is an ambitious project, planned by a group of both handicapped and able bodied persons, which would create a community of residential units surrounding a hub housing medical, rehabilitative employment, counseling, homemaker, transportation, food and social services. The goal of the community will be to "provide needed services while respecting the individual resident's freedom and privacy," according to the project booklet. For some of the prospective tenants of Atlantis, that goal can't be realized too soon. "I just sort of wish they'd hurry, " said Mike Smith. "Some of us have fatal diseases, you know, I only have two or three years to wait. " - ADAPT (637)
Disabled occupy Morehouse office ATLANTA (UPI) — About 60 wheelchair-bound protesters occupied the Morehouse College president’s office Monday, demanding a meeting with Health and Human Services Secretary Louis Sullivan. The group, American Disabled for Attendant Programs Today, or ADAPT, targeted the predominantly Black college for the demonstration because Sullivan is a former president of the Morehouse School of Medicine. The disabled protesters hoped Morehouse officials would use their influence to arrange a meeting with Sullivan. Morehouse spokesman Robert Bolton said the college’s president was trying to decide on a response to the situation, and was discussing what to do with Health and Human Services officials. ADAPT wants Sullivan to redirect 25 percent of Medicaid’s $17.5 billion nursing home budget to programs that would provide home care for the disabled. “People commit suicide, they die in nursing homes because they don’t have attendant care,”' said Michael Auberger, an organizer of the demonstration. Auberger said ADAPT was not asking for more money. Instead, the group wants funds reallocated to community programs, so disabled people can live at home with assistance. “We’re not talking about nurses,” said Auberger, who is wheelchair- bound. “Typically, most disabled people aren’t sick. For instance, I mostly just need help getting dressed and getting in my(wheelchair). “A national attendant service program would allow people to conceivably become employed when they otherwise wouldn’t" he said. Auberger said ADAPT sent a letter to Sullivan in July requesting a meeting, but had received no response. Dozens of protesters have come to Atlanta from 22 states and as far away as California for a week of demonstrations to dramatize the plight of the disabled. - ADAPT (635)
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. - ADAPT (634)
This Brain Has A Mouth (The Mouth) Jan/Feb 1991 PHOTO by Gary Bosworth: A small neat looking white woman in a motorized wheelchair, Cindy from Mass., sits in a revolving doorway. Wrapped loosely around her shoulder, wheelchair and the door frame is a long metal chain. She has a poster sign across her legs, but in the photo it is too dark to read. On her left side and slightly in front and partially in the picture, another small neat looking woman in dark sunglasses, Lillibeth Navarro, sits in her chair and appears to be talking over her shoulder. Below the picture is a text box that reads: In March of 1990, 104 members of ADAPT were arrested in the Capitol Rotunda for lobbying the old-fashioned way — with their stubborn bodies and loud mouths. Four months later President Bush sent a personal invitation to every one of those arrestees to attend the ceremonies at the signing of the Americans with Disabilities Act in the White House Rose Garden. ANGER can make you a hero, or put you in jail, or both. written and photographed by Gary Bosworth. I was one of 200 people with disabilities who converged on Atlanta three months after the historic ADA was signed, to raise the banner of ADAPT’s new demand: a clear-cut national policy on attendant service programs. The lack of basic attendant services keeps one million disabled Americans imprisoned in nursing homes when they could be full-fledged, contributing members of society. While it costs $30,000 a year to keep one of us in a nursing home, the cost of providing attendant care services for the same person is $4,000 to $6,000 a year. In an ever-deepening federal budget crisis, ADAPT’s simple proposal will cost not a single penny, but simply redirect 25% of the funds currently spent on nursing home care. Attendant services in fact save money and cut the deficit by allowing all Americans — not just the able-bodied — to be productive workers, taxpayers. October’s action for disability rights at Morehouse College in Atlanta was the national kickoff for this vital issue. Morehouse College’s most famous graduate is Martin Luther King, Jr. Our protest there followed in King's grand tradition of non-violent passive civil disobedience. Morehouse College is also the alma mater of U.S. Secretary of Health and Human Services, Louis Sullivan — the man with the power to push for a new national policy on attendant services. ADAPT had written to Secretary Sullivan months in advance, asking for a meeting. Sullivan was scheduled to be in Atlanta the week before. ADAPT asked for an hour of his time. Sullivan did not respond. More than fifty of ADAPT’s demonstrators took over the President's office at Morehouse College for the night of October 1st. A young boy saw news of our protests on TV that evening. He stayed up late into the night to make a sandwich for each demonstrator, pack each sandwich into a bag, and write on every bag: "You are my Hero." The boy and his mother delivered those hero sandwiches to the demonstrators the next morning. When we returned from the college, street vendors along the route stood up and applauded our wheelchair parade. At another protest in Decatur, Georgia, traffic stopped several times on a four-lane highway while the drivers honked their horns in support of the issues we raised. On October 3, we forced the issue further, blockading the doors of the Federal Building. [See photos...] During the four hours it took for the police to arrest 64 people with disabilities who were blocking the entrance, one police officer took a break to speak with a woman in a wheelchair who waited to be loaded onto the arrest bus. The cop said that his wife had just suffered a stroke. Because there is no attendant services program in Georgia, he expected to see his wife go into a nursing home — against both their wishes — within the next six months. The woman he had arrested told him that's why she was demonstrating: to speak for people like his wife who couldn’t speak out themselves. After the woman was loaded onto the arrest bus, the policeman asked to hold her hand. She reached out the window. He took her hand. Then he cried. Please, let us all put our anger into action and speak out for attendant services. Whatever happens — jail or heroism or both — we're going all the way. PHOTO by Gary Bosworth: A group of about 7 protesters, all but one in wheelchairs, stand in front of the mirror glass walls and front door of a building. One person standing and one person in a wheelchair hold a giant ADAPT flag behind a man in a wheelchair giving the power fist. Bob Kafka is sitting behind the flag and Cindy from Boston and another wheelchair user hold the end of the flag. The end Gary Bosworth has been active in disability rights for 8 years, is co-founder of Desert Access of Palm Springs, California, and member of the Board of Directors of Southern California ADAPT. - ADAPT (628)
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. - 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" - ADAPT (22)
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.