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Hjem / Albumer / Merknader Medicaid 24
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ADAPT (1018)
Houston Chronicle Tuesday May21, 1996 Headline: 5 arrested after building is taken over in protest [page has a crease down the middle so some text is hidden, most was able to be figured out] by Lisa Teachey -- Houston Chronicle About 400 disabled people took over a westside building Monday until police arrived to move the protest outside. Members of American Disabled for Attendant Programs Today, most of them in wheelchairs, blocked the entrance and elevators leading to Living Centers of America at 15415 Katy Freeway at about 10:30 a.m. Five people who refused to leave the building were arrested for criminal trespass, said Houston police Capt. D.E. Watkins. None of the arrested was wheelchair bound. The protest was staged because ADAPT wants a larger share of the federal money dedicated to nursing home care to go to programs that provide in-home care or community-based care for the disabled. “We're tired of the nursing home industry keeping a lock on over 85 percent of the long-term care money,” said protester Diane Coleman. “If a person needs long-term care, they should be able to say where they [obscured partially here] get, not the system.” Federal money is set aside through Medicaid for nursing home care as well as for attendant-care and community-based programs, said Katherine Hinson, of the Texas Health Care Association, a trade organization that represents long-term care facilities. “They want to take money from one under funded program and put it in another under-funded program,” Hinson said. “There’s not enough money to go around. We've asked them to join us to get more funding for all.“ Living Centers is a long-term health care corporation that operates nursing facilities, rehabilitation centers a other types of facilities. “Their main quarrel is with the government,” said Edward Kuntz, Living Centers chief executive officer. “They want additional funding." Kuntz said he agrees with ADAPT's call for more money, “but not at the cost of long-term nursing facilities."
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.
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 (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 (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 (37)
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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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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November 1992 Access USA News Page 5 Atlantis leads to ADAPT leads to independence Cathy Seabaugh, Staff Writer DENVER,CO-Their offices are relatively small compared to the massive projects the American Disabled for Attendant Programs Today organization tackles. An inconspicuous location in south central Denver serves as national headquarters for the 29 states who have ADAPT chapters. This Colorado town is a gold mine for members of the disabled community, not so much for its accessibility and attitudes, but for the brainstem which this office at 12 Broadway has become. ADAPT representatives throughout the United States act as nerve endings, sending vital messages to the Denver office so it can operate efficiently and effectively. Effectiveness: a term well defined by ADAPT members. ADAPT was conceived and delivered by staff and volunteers of Atlantis Community, founded in 1975 by former nursing home employee Wade Blank and Mike Auberger, a quadriplegic from a bobsledding accident in 1971. Atlantis emerged so that individuals, even those who are severely, multiply-disabled, have the option to live outside an institution. ln its first l5 years, Atlantis was able to successfully transition more than 400 disabled adults from “sheltered settings" to more independent living standards. As an admirable offspring of Atlantis, ADAPT set its own agenda in June 1983 and embarked on an action-packed mission to make public transportation accessible to everyone. American Disabled for Accessible Public Transit set out to train, develop and empower disabled activists so they could effectively battle for that accessibility. Eighteen members of the Atlantis community had taken the first strides toward accessible public transportation in Denver when they gathered on July 5&6, 1978, to block city buses at Broadway and Colfax across from the state capitol. ‘Then in 1982, after beating up the board enough," said Auberger, one of the 18, "they decided they'd buy all lift-equipped buses." Once ADAPT formed the next year, the foundation was in place. With Denver as a model, activists began chipping away at other cities’ granite-like, antiquated public transportation systems. "(Former President Jimmy) Carter appointed Brock Adams in 1976 and Adams set a federal mandate that all new buses bought with federal money had to have (wheelchair) lifts,” Auberger said. "Under the Reagan administration, APTA (American Public Transit Association) sued (to avoid the lift requirements) and won. "APTA was having its national convention in Denver in October 1983 and about 20 people from across the country showed up to join about 22 people from Denver. We sent notice to (APTA) that their convention would not go uninterrupted if they did not meet with us. They went to the mayor, but he said he wouldn't protect them unless they agreed to meet with us.” ADAPT met APTA there. They would meet many more times. "We decided wherever they had a convention, we would go,” Auberger said. "It moved us around to communities where they'd never been exposed to the issues. People all of a sudden became aware. "If we're talking about the issues, people are going to form an opinion. You polarize people. Whether they support you or not is not the point. If there's not an opinion there, you can't change it." The deep roots, pockets or whatever of APTA were a long-time barrier for ADAPT. But as the Americans with Disabilities Act cemented and included regulations for public transportation, APTA’s resistance to ADAPT's demands weakened until the federal govemment finally made ADA the law. With that priceless piece of legislation signed and inducted into the pages of history, ADAPT was ready for its next mission. "What we said at that point to members was to put out feelers in your communities,” Auberger said. "What we found was personal assistants was the biggest issue of concern.” Retaining the ADAPT acronym, the group devised new plans to force change in the long-term health care system of the United States. “At least 60 percent of ADAPT members have (resided) in nursing homes at one time or another,” Auberger said, "The other 40 percent have spent their lives trying to avoid going into one.” Although ADAPT and Atlantis are neither to lose its identity in the other, they are a family unit and work together toward change. Atlantis is a certified home health care agency, making 53,000 visits each year in Denver and Colorado Springs, serving approximately 85 clients. “That's 365 days a year, whether there's three feet of snow on the ground or it's 105 degrees," Auberger said. “We have a 24-hours-a-day emergency backup system that works probably 98 percent of the time." One Atlantis client is a C2 quadriplegic who is on a ventilator nonstop. Yet he is allowed to live in his own home with the help of Atlantis personal attendants. "That shows you our capabilities,” Auberger said. ”We can provide 24-hour care for about $7,500 a year. A nursing home would do it for $20,000.” ADAPT’s scrapbook for the past two years includes protests in almost countless cities throughout the country. Wherever Dr. Louis Sullivan, Secretary of the Department of Health and Human Services, made a speech or appearance, ADAPT added itself to the invitation list. The protests usually involved arrests, which is a proven effective tool for drawing media coverage. Radical activity, some say. "We really give the middle-of-the-road disabled community members the power to make change," Auberger said. "We make them look sane. “It's like in Illinois, Gov. Edgar didn't have a problem meeting with the straight group who went to Springfield because they were sane. lf he dealt with our radical group, he'd have to deal with all radical groups. We really give (middle-of-the-road community members) a platform." ADAPT picks on Sullivan because, they say, he can initiate change. They argue that Sullivan's signature is all that's necessary to require the states receiving Medicaid to provide personal assistants. Just more than half the states provide such funding and many; if not all, of those programs are underfunded, restricted and far short of meeting the demand. ADAPT seeks to convince Health and Human Services - Sullivan - to take one-third of the $15 billion Medicaid dollars and commit it to home-based, consumer-controlled services. "Every state that buys into Medicaid has to fund nursing homes,” Auberger said, explaining how the system currently works. Sixty-five percent of all money paid to nursing homes is Medicaid funds. "States have little play in what they can do with Medicaid.” Nursing homes use what's called a “cold bed rate" which refers to the empty beds in their institutions that are not producing income. Lobbyists for the nursing home industry are looking at these rates and profit margins, not at long-term care that allows individuals to retain their independence. "We’ve become a valuable commodity,” Auberger said. "It's a normal mindset to put someone in a nursing home. This is so ingrained in our society. There's currently no alternative, and most people aren't able to envision the type of care we're talking about." Auberger encourages every person he can to write letters to members of Congress, senators and other politicians who can have an impact on the future of people with disabilities. "When you do that, you raise a level of consciousness,” he said. "You don't have to mention (the numbers), just the concept. "The logic is the problem. When parents are doing (personal attendant care), for free, it doesn't have to be skilled. When Medicaid pays for that same care, a nurse has to do it.” Statistics provided by the American Health Care Association show the average lifespan on an individual in a nursing home is 21 months. "You can't convince me there's quality care in a nursing home," Auberger said. "We (at Atlantis) are non-medical personal attendants. When the staff goes into a home, the person in that home is the boss. We do things the way they want us to do them. "People don't have to give up their power to able-bodied people. But it's okay to share the power." Although many members of the disabled community have made endorsements this election year, ADAPT chooses to remain rather neutral - for a change. "Don't pick a side,” Auberger said. "As soon as you pick a side and that side loses, you now have an enemy on the other side. That's been real effective tor us. We'll rate candidates on disability issues, but we won't endorse anyone. "If there's a disability issue in Colorado, legislators call here, the media calls here. We're a powerful entity in this state. As hundreds of ADAPT activists confronted the annual conference of the nursing home industry in San Francisco October 19-21, the power of this entity spread toward the Pacific. Persons interested in more information about ADAPT can call Auberger or Wade Blank at (303) 733-9324 (voice and TDD). INSERT AT CENTER OF PAGE: Across the top in bold letters the word "ATLANTIS" and below that ADAPT's new Free Our People logo, the wheelchair access symbol with it's arms raised above its head breaking chains that are bound to it's wrists. Above this figure, in a semi-circular pattern the words "Free Our People" and below, also in a semi-circular pattern, "ADAPT"
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Edition USA/Colorado ADAPT seeks home care for all by Kerri S. Smith A national disabled persons’ advocacy organization based in Denver has launched a campaign aimed at moving people from nursing homes to home care. American Disabled for Attendant Programs Today (ADAPT) has at short-term goal: to re-direct 25 percent on the government's annual nursing home care budget. That money—estimated at $5.5 billion federal money and $5.5 billion from state coffers-would fund a national home care program instead. Under the ADAPT proposal, nursing home residents whose care is covered by Medicare or Medicaid could live at home. The government would pay home are attendants to care for them, rather than paying the facility. ADAPT spokesperson Mike Auberger said the group seeks “the ultimate demise of the nursing home system," and contends that paying an attendant to provide home care for a person usually costs less than nursing home care. In theory, the ADAPT plan would spend government money more efficiently-the same money would be used to care for more people who need assistance. The government is not enthusiastic about the idea, and a local nursing home industry spokesperson said ADAPT's demands are unrealistic. Auberger said Health and Human Services secretary Louis Sullivan declined to meet with ADAPT representatives. "We've been going back and forth with them, and the outcome is he doesn't meet with radical groups," Auberger said. And Arlene Linton, executive director of the Colorado Health Care Association (CHCA), said moving nursing home residents out of facilities “would isolate many of them from the community. “They'd also be without the 24-hour-care and rehabilitative services provided in nursing homes," Linton said. CHCA is the local branch of the American Health Care Association, which represents the nursing home industry. Linton added that ADAPT "is talking dollars, not people. Some residents have outlived their family and friends, and need the support a nursing home offers." A national campaign to publicize ADAPT's proposal began Jan. 15. Members demonstrated at government offices (including Health Care Financing Administration offices) and nursing homes in 24 cities. Auberger said media coverage was minimal, due to the Persian Gulf Crisis. Locally, ADAPT representatives demonstrated in Lakewood at Bethany Care Center. In the mid-'70s, the facility was operated by different owners and was known as Heritage House. Conditions at that time sparked a 13-year lawsuit over nursing home residents’ rights. The Federal Omnibus Reconciliation Act (OBRA) of 1988 also addressed quality of life issues for nursing home residents. The bill became effective Oct. 1, 1990. ln 1974, former Heritage House residents joined with Denverite Wade Blank and others to form the Atlantis Community, a local home care agency that currently cares for 135 people in Denver and Colorado Springs. Later, Atlantis Community leaders founded ADAPT. The group mobilized the civil rights movement for disabled persons, and ultimately affected the way nursing homes are inspected and regulated nationally. Auberger claims many current nursing home patients don't require intensive medical care, and "end up there only because they're out of money or their families can't care for them." Linton said CHCA met with ADAPT representatives twice to discuss the attendant proposal, "but they rejected our request to form a task force to find common ground." While Linton endorses home care as “a part of the long-term care continuum," she called the ADAPT proposal “robbing Peter to pay Paul. "We cannot support the concept of lowering funding for nursing home patients, to set up another funding to attendant services," Linton said. “We need new, additional funding for that." Recent federal budget cuts may make additional funding unlikely, at least in the near future. Atlantis and ADAPT are determined, however, and they are prepared for a long campaign.
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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.
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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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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.
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[This clipping has 2 articles in it. Article 2 starts in the left top column. Article 1 continued from ADAPT 691 and the text of that article in included with ADAPT 691 for easier reading.] ARTICLE 2 Title: Health care activism on the rise Title: Special-interest patient `groups` are multiplying while the amount of money available is decreasing. By Delthia Ricks, of the Sentinel staff The dilemmas of increasing numbers of special-interest patient `groups` and a decreasing supply of health care dollars are spawning a growing militant movement in medical care. The opening of the American Health Care Association’s annual meeting in Orlando has drawn a spotlight to the activism increasingly associated with national health care issues. From AIDS to breast cancer to rare diseases, patients are organizing and resorting to demonstrations and protests — often violent ones — to express their views. Members of ADAPT — American Disabled for Attendant Programs Today — have formed human barricades, chained themselves by the neck to buildings, tacked up posters against the Health and Human Services secretary, and hurled themselves from wheelchairs. The group stages many of these demonstrations at AHCA's meetings, which ADAPT routinely follows around the country. The non-profit AHCA, headquartered in Washington, is a key lobbying organization for nursing homes and other long-term health care facilities, representing about 10,000 of them nationwide. At issue for both `groups` is the way the federal government spends it health care money. Nursing home executives would like to see long-term health care policies reformed. ADAPT members want a share of the federal dollars going to nursing homes now. “They're not looking at the real issue, which is long-term health care financing," Linda Keegan, an AHCA vice president said of ADAPT. “One of the biggest issues we face today is long-term health care financing reform." Among the issues her organization will address throughout the week will be ways in which the government can devise a long-term health care policy and meet the needs of elderly and disabled Americans, she said. But ADAPT's members see billions of dollars currently flowing into long-term health care facilities and would like to have 25 percent. This way, they say, the disabled would be kept out of special care homes and living independently. ADAPT sees using money allocated through the state and federally administered Medicaid program for in-home health care aides. The aides would be paid to cook, drive and do chores for people who are blind, have lost the use of their limbs, or suffer other disabilities. “The issue is the right to independent living," said Ida Unsain, director of home health care at ADAPT‘s Denver headquarters. “People with disabilities are being admitted into care homes. Some of these individuals don't belong there and could be taken care of through home health. The current structure of reimbursement is slated toward care home industries, and what ADAPT is stating is that a percentage of that budget be allocated to states for independent care for the disabled." In 1989, the most recent year federal figures are available, the federal govemment paid $23 billion in nursing home costs through the Medicaid system. Another $23 billion was paid by a combination of family assets, Veterans Administration benefits and private insurance to meet additional nuising home costs. In Florida, nearly $850 million is paid to nursing homes from a Medicaid budget of about $4 billion, By 2020, federal officials estimate Washington's contribution to nursing homes will be $100 billion if the nation maintains the current Medicaid payment system. Lack of a long-term health care policy that will carry the nation into the 21st century has been as big a problem for established `groups`, such the AHCA, as it has been for patients. President Bush repeatedly has said that a long-term health care policy is an administration goal, but a plan that meets the needs of both the elderly and disabled has yet to be approved. ADAPT's Unsain said her group does not want to wait for the administration to produce a new long-term health care policy. Money may not be allocated for them in a new health-care pie, she said, and that's why ADAPT members are seeking money now. “The violence is part of the outcome," Unsain said. “lt's what happens when we try to express our views. It's not what we're all about." She attributes passage of last year's federal Disability Act mandating increased access for the disabled on public transportation systems, and in buildings, to ADAPT's militancy throughout the 1980s. Keegan of the nursing home association said ADAPT members, who stage protests every time the AHCA meets, are not concerned about changing the way the government finances long-term care. “I think the reason they follow us is because they are looking for attention, and the method they've chosen to got mention is confrontation and disruption.“ she said.
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The Orlando Sentinel Local & state B TUESDAY, October 8, 1991 [This clipping contains two articles. Artilce 1, titled Q & A is a boxed insert. It is continued on a page that are not currently available. Article 2 continues in ADAPT 686 but the entire text of the article is included here for easier reading.] Main Title: Disabled protesters refuse to attend talks Article 1 - Title: Q&A no author given; Lauren Ritchie is interviewer. Mike Auberger discusses why the group of disabled people that he helped organize is protesting the meeting of the American Health Care Association. Auberger was interviewed Monday from his cell at the Orange County Jail by Lauren Ritchie. Question: Why is ADAPT targeting nursing home operators? Answer: The nursing home industry is a $50 billion a year organization. lf you happen to be 30 years old and disabled and live, say, in Ocala —— and there are no personal assistance programs — than you're forced into a nursing home simply because you have physical needs you can't take care of yourself. Q: Why, from your perspective, is that bad? A: If you've ever talked to anybody who's been in a nursing home, the only difference between there and jail is the color of the uniforms. The jail uses guns to keep you there; the nursing home uses pills. You have no choice about when you get up, what you wear, what you eat or don't eat and when you go to bed. When we talk about nursing homes, we talk in terms of incarceration. You never escape from a nursing home. lf you are older and disabled, you could be forced to sell your home, forced to give up everything. The issue is quality of life. Most people can be taken care of in their own homes. Q: Why does ADAPT focus on nursing homes rather than the federal goverment? A: Under the Medicaid program, each state is required to participate in nursing home funding [for the disabled]. Every time a state does a budget it has to identify a certain amount of dollars for nursing homes. If you ... please see Q & A, B-4 Article 2 Photo by Red Huber/Sentinel: The picture is divided almost down the middle by a line of police barricades. On the left side a row of uniformed police officers stand leaning forward, arms stiff, holding the barricades in place. On the right a line of ADAPT protesters (San Anontio Fuentes closest to the camera) face off with the police. Behind them several standing people look on. Caption: A steel barricade and a line of Orange County deputy sheriffs prevent protesters from reaching the doors at the convention center. Title: Deputies expect the protests will grow worse when famous speakers address the convention. By Mary Brooks, of the Sentinel Staff Disabled activists demonstrating at a convention of nursing home operators rejected an offer to meet with industry leaders Monday, calling it a ploy to end their protest. But a spokeswoman for the American Health Care Association, which is playing host to 3,500 people at its annual conference in Orlando, said members of ADAPT -- Americans Disabled for Attendant Programs - seemed more interested in drawing television cameras than in drawing up an agreement at a discussion table. Activists say they plan to continue trying to block entrances to the Orange County Convention and Civic Center until the conference ends Thursday. Deputies expect the worst will come during the visits of the convention's noted speakers. This morning, Red Cross president Elizabeth Dole will address the convention. Television weatherman Willard Scott is scheduled to speak Wednesday. In their second day of demonstrations Monday; about 120 ADAPT members clustered near the three main entrances to the convention center on International Drive. They were barred from approaching the center doors by portable steel fences and 130 Orange County deputy sheriffs. "In the past they've blocked entrances with chains. We want to prevent that," said sheriff's spokesman Cpl. Doug Sarubbi. “They have a right to be here, but the conference attendees have a right to be here. too." Two protesters were arrested late Monday after they refused to stop using a loudspeaker. The protesters, many of them in wheelchairs and a few with guide dogs, sang, chanted and shouted at convention-goers. Tension mounted for several minutes when some of the disabled rammed their wheelchairs into the barricades. There were no injuries. Organizers said the 74 protesters arrested in clashes with deputies on Sunday at the Peabody Hotel on International Drive would not post bond and would remain in the Orange County Jail. Pat Hasley, a hotel security guard who suffered a heart attack during Sunday’s demonstration, was in stable condition Monday at Sand Lake Hospital. Denver-based ADAPT wants Medicaid to funnel 25 percent of the $23 billion nursing home budget to home care for the disabled. The group also wants the chance to address convention participants. “Right now, if you're disabled and need medical services and can’t afford it, they’re going to lock you up" in a nursing home, said Stephanie Thomas, an ADAPT organizer. Demonstrators claimed that 1.6 million disabled people in nursing homes really shouldn’t be there. “We don’t think the extreme needs of a very small percentage should dictate where all the money goes,” said Molly Blank, an organizer from Denver. During about four hours of protest Monday, some convention-goers stood outside the center to watch. Ralph Frasca of Cedar Falls, Iowa, and Mary Scheider of Joliet, Ill., were among a few who ventured over to talk to the demonstrators. “They have a legitimate grievance,” Scheider said. “The main issue is at-home care, diverting funding from institutional care to home care. The funding system now is skewed toward institutional care." Frasca, a journalism professor at the University of Northern lowa, said many convention participants were tumed off by ADAPT’s approach. “The discussion thus far has not centered around issues but rather the sensationalism of the event. I think a non confrontational, peaceful dialogue should be taking place." Linda Keegan, a spokeswoman for the American Health Care Association, said the demonstration did not disturb the convention activities. She said ADAPT had not contacted the association about a meeting or about getting time on the convention agenda before Sunday. She said the health care association’s executive board has met with the group twice this year, each meeting ending in chaos. “We made a commitment to meet. They made a commitment to protest.” The association proposed on Monday to meet with ADAPT on Thursday under the condition that the activists stop protesting. “We don't think that is a good faith offer," said Thomas. The Sheriffs Office and the jail had made extensive preparations for handling the disabled protesters, including special training and added staff. Sarubbi said the Sheriff's Office would not know what the cost would be until the demonstrations are over. Ed Royal, an Orange County Jail administrator, said volunteers from jail ministries were helping to defray some of the costs of handling the disabled inmates. The jail also had to get foam mattresses, diapers, chargers for wheelchair batteries, and other special equipment. The problems of caring for the protesters are many, Royal said. Staff and volunteers had to document and administer medication, and to help inmates relieve, bathe and feed themselves. Jail officials were able to make trades for some supplies with hospitals, but other materials had to be bought. Monday morning, 37 jailed activists began refusing food and liquids and another 10 would not eat but were drinking. Medical staff were monitoring the hunger strikers and were prepared to take them to hospitals if needed, said Royal. On its lawyers’ advice, the corrections department has been videotaping the disabled inmates since their arrival. "They have a history of saying they were mistreated while in custody, so we're taking no chances," said Royal.