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- ADAPT (727)
Reades Chicago May 29, 1992 Neighborhood News Insert Text Box: Prisoners of bureaucracy: state keeps the disabled in nursing homes at twice the price of home care. The reason? Budget cuts! Photo by LLoyd De Grane: A man, seen through the spokes of a manual wheelchair wheel, sits in a sporty manual wheelchair wearing no shoes. Looking at the floor thinking, he rests his chin on his fist. He is in a cinder block room with a crucifiction on one wall behind him, and a Virgin Mary statue in the corner on his other side. Caption reads: Louis Summers article: By Ben Joravsky It took Louis Summers, who is deaf and physically disabled, more than three years to prepare himself to live independently. But it took only a single directive issued by the state one day last February to keep him dependent in a nursing home. The nursing home is in south-suburban Harvey, where nurses and aides are available round the clock. Summers had been set to move to a less costly Chicago facility that emphasizes independent living for the disabled when the stare cut the funding for its home-services program and froze the number of people eligible to have personal assistants. That meant there would be no money to pay for the assistant he would have needed to help dress and bathe him, the cost of which he couldn’t pay himself. So he's still in the nursing home. “I feel trapped,” he says. "I want to get out and become more independent. I want to get job training. I want to get a job. But the state is keeping me in a nursing home where I am fully dependent on the staff." State officials blame the home-services cuts on the rising deficit. Yet it will cost the state far more to keep Summers in a nursing home than it would to provide him with independent health care. “For health and financial reasons it's bad to foster dependence,” says Karen Gerbig, a public educator for Access Living, a Chicago based not-for-profit advocacy group for the disabled. “In the name of saving money the state is actually spending more money. lt doesn‘t make sense any way you look at it." The irony is not lost on state officials, who acknowledge that roughly 4,000 disabled residents have lost the right to a personal assistant since the freeze went into effect in February. By midsummer that number could rise to 5,000. “It costs about $1,200 a month for the state to pay for someone to be institutionalized; the average home oust is about $600 a month," says Melisa Skilbeck, a spokeswoman for the state Department of Rehabilitation Services, which oversees the home-services program. “We are proud of our home-services program. We hope there’s a way to fund it so we can reopen intake." Summers, however, doesn’t want to wait. He was bom and raised in southern lllinois, and he's been in and out of hospitals and nursing homes since 1989, when he was hit by a train. "I was walking along the tracks, and l didn't see the train coming," says Summers, who was born deaf. “l‘ve been in a wheelchair ever since the accident.” He stayed briefly in a hospital, after which doctors transferred him to the Rehabilitation Institute of Chicago. "Louis has a dual disability, so he‘s more vulnerable to being shuffled around the system," says Tom Benziger, an organizer with Access Living who first met Summers about two years ago. “l lost track of him for a while. He was in and out of hospitals. Then I discovered that he was in a nursing home in Harvey." Benziger and therapists at RIC encouraged Summers to think about living independently. Along with other organizations for the disabled, Access Living members have fought to force public-transportation agencies to fit buses with electronic lifts so that people in wheelchairs would not be dependent on special shuttle services. They have also pressed for laws that require access ramps in restaurants, theaters, and other public places. "Disabled people are often marginalized," says Gerbig. "But disabled people are capable of living independent lives if public facilities are made more accessible." One major issue for the disabled is changing federal and state rules so that more money is provided for personal assistants. "l don't need around-the-clock care," says Summers. “I don't need to be in a hospital room all night. I can get training. I can still use my hands. l can work. l‘m not happy in the nursing home. lt's lonely there. Most of the people are older. It’s not the right place for me. I'd be much better off somewhere else where I could be more independent." With help from Benziger, Summers was able to secure a spot in the Silent Co-op apartments on the city's northwest side. Then the state announced the freeze on personal assistants. “I needed a personal assistant to work at least a few hours a day to get into the co-op," says Summers. "But the state said that since I was already in a nursing home I couldn't get a personal assistant. That means I could never get out of the nursing home: It was a catch-22.” Most agencies that provide personal assistants charge about $14 an hour —as Stephanie Renner discovered when her son Patrick was disabled last year after he was shot. “Right now my mother, myself, and Patrick's girlfriend are taking care of him, but it's very hard," she says. “We don't have the money to pay $14 an hour. If I got some assistance, I could pay someone $5 an hour. But the state won't help us at all. All Patrick needs is someone for a couple hours in the morning. Someone to help him get out of bed, get dressed, take a shower, and help him with his bowel program." In addition to its freeze the state also now requires all those who want it to continue paying for a personal assistant to demonstrate every year that they're severely disabled. “I have cerebral palsy, and yet I have to be tested each year to see if I qualify for a personal assistant," says Gwendalyn Jackson, a south-side resident who uses a wheelchair. “I have to prove yearly that I am disabled. That's ludicrous." Many activists believe the freeze and the changed eligibility requirements are first steps toward eliminating all funding for personal assistants. “They want to make people more dependent on nursing homes or their families," says Gerbig. “That's only going to cause more strain on the families.“ State oflicials say they want to keep some funding for personal assistants. They say the changes have less to do with health policy than with the fact that the state owes about $748 million in overdue bills—the reason Governor Edgar called for across-the-board cuts or freezes in government services. “The home-services budget was $69 million for this year," says Skilbeck. "Next year it will be about $65 million—that‘s a 6 percent cut. The governor‘s directive was to do everything we could to preserve people who were receiving care. That means we have to close intake, while maintaining the program for those who already have personal assistants." State officials say that the federal government must share some of the blame for the cutbacks. "The federal dollars that support these programs are provided as reimbursements,“ says Skilbeck. “We can't be reimbursed on a dollar until we spend a dollar. Well, if we don't have the money up front, it's hard to pay for the services. And with the state owing so much money, we don't have a lot of money up front." It would be irresponsible for the state to continue full home-care programs if it doesn't have the money to pay personal assistants on time, Skilbeck says. "You're dealing with an individual who may not get by without a paycheck. A nursing home or an institution has more cash in reserve.“ Advocates for the disabled don’t buy this argument. They contend that state and federal policies are shaped by the powerful nursing-home lobby. “It's easier for the bureaucracies to stay the same than to change," says Gerbig. "We need a whole new way of looking at these things." So far activists have had little impact on the powerful Republicans in Washington and Springfield who shape health-care policy. For months they have asked Louis Sullivan, secretary of the federal Department of Health and Human Services, to set aside a larger portion of medicaid funds for home care. But Sullivan has spurned their requests. He argues that such decisions should be made by individual states. ln early May ADAPT took the issue to the streets, protesting a speech Sullivan made before the University of Illinois here. Sullivan ignored the protest and refused to meet with the group, which seems to be a policy with him. ADAPT members staged another protest at the State of Illinois building, but Governor Edgar also refused to meet with them. “ln the past the governor has promised to meet with us, but he never does," says Gerbig. “So last week we took over the 16th floor of the State of lllinois building. We had about 30 people up there until they shut the power off for the elevator. lt was incredible to see the non-disabled people saying ‘Turn on these elevators-—l have to get somewhere. Why are you punishing us?’ We said, ‘Now you know how we feel.‘ They said, ‘lt’s not my fault.’ We said, ‘Please understand. This is what we go through all the time."' Summers did not intend to take part in those demonstrations. But he was downtown on other business and got swept up in the protests. "The transportation system that brought Louis downtown failed to pick him up,” says Gerbig. “He was in a bind. And he wound up staying overnight at a hotel and meeting a lot of the protesters. He's been politicized by this. His life will never be the same." At the very least Summers hopes the actions will change the home—services policy so he'll be able to leave the nursing home. “I want to move ahead with my life. I don't want to be stuck in Harvey." - ADAPT (688)
[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. - ADAPT (290)
[This page continues the article from Image 297. Full text available under 297 for easier reading.] - ADAPT (17)
The Denver Post - Monday April 5, 1976 [Headline] Reader Opinions - Open Forum "There is no hope for the satisfied man." Frederick G. Bonfils [Subheading] Miracles for Disabled Occur At Atlantis Community Project To the Denver Post: THE COMMISSION on the Disabled is, and has been, a strong backer of the Atlantis Community, lnc., located in the Las Casitas Housing Development at 2965 W. 11th Ave. In recognition ol the commission's support, this letter will attempt to bring readers up to date on the activities and accomplishments of Atlantis. Atlantis is, by design and philosophy, an alternative to nursing home living for the disabled people of the state. It also serves as a model for independent living for the disabled. Further, and possibly most important, Atlantis serves the community at large and reminds the able-bodied people of the area that the disabled are not as disabled as some of society might think, and that the disabled do not all live in hospitals, never to see the outdoors again. In June of 1975 the Early Action phase of the Atlantis Community opened its doors to 14 severely disabled persons, utilizing seven housing units in the Las Casitas Development. These 3-bedroom units were converted to 2-bedroom units with wider doorways, ramped entrances, widened hallways and other modifications to facilitate movement by occupants in wheelchairs. These apartments can now be used by either disabled or able-bodied occupants. Each resident has his own room and a shared living area with one other resident. There are attendants around the clock to attend to any medical or physical problem which might arise. Atlantis has effected changes in the community beneficial to all of the community, not only the disabled; changes such as the lowering and ramping of curbs and sidewalks between the buildings of Las Casitas. The ramped curbs can be used by bicyclists, mothers with baby carriages and women with shopping carts, to say nothing of the elderly out for a walk. The sidewalks are also used by everyone. So an improvement for the disabled is, in fact, an improvement for us all. Atlantis has been and will be instrumental in creating awareness in the Denver area, not just at the Early Action site itself. The Early Action phase of the Atlantis Community is now. Looking forward into tomorrow is the Atlantis Pre-Planning Program. This program, funded through the Community Development Act in the amount of $80,000 will, over the next 12 months, attempt to answer many questions concerning the disabled population of our city, and make recommendations directed to an equalized status of the disabled in relationship to the able-bodied community. Many areas will be researched to compile the data needed for long range recommendations. Some of the areas include statistical information, medical, legal (i.e., legislative and regulatory), social services, housing, transportation, etc., financial and physical planning, as well as where to obtain funding for the implementation of the final recommendations. The final document, complete with possible site locations, will be distributed to all federal, state and city agencies dealing with the disabled. For the most part, when a person is admitted to a nursing home it means that he is virtually committed to this home. Almost [all of the money given to the] disabled person go directly to the nursing home, with the exception of $25 per month "personal needs" money that goes to the individual. This means that the individual is penniless by any accepted standards, and at the mercy and whim of the home. For instance, you are told when you will bathe, when you will eat, when you will go to bed, etc. You only have the choice of whether you will see a movie or not, you do not have the choice as to what movie you might wish to see. There is entirely too much idle time; time in which to prove to yourself that you are in fact worthless. There is no privacy and most of the time you wonder if even your thoughts are your own. After spending several years in a nursing home this writer can speak for the validity of the above statements. The Atlantis Community is an alternative to nursing homes, in that Atlantis gives the same care, but when you want it. When it is convenient for me to have my bath, I call the attendant and am helped. The majority of the time I can eat when I feel like it. I have no set bedtime. When I know there is a movie I want to see there is a van to take me there. I have a choice! More importantly, my dignity has been returned to me. I am a contributing member of the fine city of Denver. I work on the Hot Line at Early Action and will also be involved in the Pre-Planning Program. I have freedom and independence, and am responsible for my own finances. I am a person. I cannot help that I am not an able-bodied person, but I am able! It is not the intent of this writer to imply staff members at Atlantis perform miracles, they do not. They just allow them to happen. One example would be a young lady, who, after brain surgery to remove a tumor, languished in nursing homes for 14 years. The surgery had left her childlike and unable to talk. While in the nursing homes she was considered to be simply a custodial care case. She did not seem to care whether her area of the room was cleaned, or even it her personal belongings were kept straightened. However, upon her arrival at Early Action, she immediately took charge of cleaning and straightening her apartment. She became so conscious of the cleanliness of her apartment that during a time when she was ill and had to depend on someone else to do the housework, she became very upset one day to find bread crumbs on the kitchen table. This young lady is also proof of the strange contradiction Early Action staff and residents are discovering; that better medical care is possible outside the nursing home. Upon her new doctors' recommendations, she started receiving physical therapy. something the nursing homes thought was a waste of time in her case. As the result of progress made while receiving therapy, orthopedic surgery was indicated, which she is recuperating from at the time of this writing. Her doctors feel this surgery will enable her to walk. Miracles at Atlantis? You decide. Progress and better care with new lifestyles? Definitely! Ms. Carolyn Finnell Atlantis Early Action Resident - ADAPT (16)
The Denver Post - Sunday June 1, 1975 PHOTO by John Prieto: A woman (Linda Chism) sits in a wheelchair with her legs extended out in front of her and covered by a blanket. Her shoulders are covered by a jacket. She has a lap board on her chair and her purse/bag is resting on it. She is looking ahead. To her left sits a man (Glenn Kopp) in a wheelchair. He has longish hair, a goatee and is wearing glasses. He looks down slightly, as if listening. In the front bottom corner of the picture someone's arm is visible. Caption reads: Linda Chism and Glenn Kopp discuss Independent-Living Idea They are in living room of apartment at the Las Casitas complex. [Headline] Independence from Nursing Homes - Atlantis' Handicapped Move to New Life by Pat Afzal On the surface, this Sunday is just a moving day for eight Denver area young men and women. Underneath, however, the day emerges as a first, precious taste of freedom for them. They are severely handicapped and will move out of nursing homes Sunday into their own apartments and have a crack at independent living. Sunday will be, oh .... like Christmas,” says wheelchair-bound Glenn Kopp, co-executive director of the Atlantis Community, Inc. The group is leasing the apartments where the young adults will live. Linda Chism, Atlantis' treasurer-accountant, likens the moving experience to “a flower opening up. We don't know how it's going to work out for sure. Things will sort of evolve." Their excitement seems normal because they're helping others embark on a new experience. Then they begin to talk about why the independent-living idea got going. And their comments harden into strong indictments against the institutional way of life for the young handicapped. "You know about civil rights?," Kopp asks a reporter. "Well, a handicapped person in an institution has no civil rights." "That statement about race, creed and color - well, it doesn't apply to handicapped people. We're left out of it." Kopp, who was worked in a Denver area nursing home said that when residents there went against the rules, a punishment was to take their electric wheel chairs away. “That's (the chairs) your freedom, you’re movement. Without it, you can't get around." [Subheading] Rule Ridiculed He ridiculed a rule that said the handicapped had to be in bed by 9 p.m. “Why should a grown man have to go to bed at 9 o’clock?" he asks. “It's a so very dehumanizing way to live, to say the least,” Ms. Chism adds. “You’re without privacy. All your dignity is just gone. You're not recognized as a person. You're a patient and that's it.” Nursing homes "like a lot of young people around, tooling around in their wheel chairs,” Kopp says. “lt adds an air of something nicer than just a lot of people sitting around.” By the same token, there isn't a lot of willingness to give the young people the freedom they feel and need, Kopp says. Those who are “lucky enough to have a taste of living normally really get depressed. It can be a very sad thing." It was soon after Kopp stopped working for the nursing home in Denver that he and a friend — Wade Blank — decided that “there's gotta be a better way to live. There has to be some better options." They slowly began to attract verbal, but not much monetary, support for their idea and Atlantis Community, Inc., was born. Eventually the group wants to build a 140-unit apartment complex for the severely handicapped. Right now, however, their first project is the seven apartment units in Las Casitas complex on Denver's west side where the eight young people will be moving Sunday. The apartments are on the western edge of a larger apartment complex in the 1200 block of Federal Boulavard. Credit for helping to make Atlantis’ dream a reality goes to Dr. Henry A. Foley, state director of social services, and John Helm of the Denver Housing Authority, Kopp said. “We went in cold to Dr. Foley, and he got us $3,000 seed money to apply to a larger grant," Kopp said. The grant, from the Department of Vocational Rehabilitation, made possible almost $20,000 in renovations at the Las Casitas apartments. Helm told them about the apartment vacancies. The new tenants will live on welfare and social service payments, and visiting nurses and on-site attendants will help take care of their medical and personal needs. On July 1, six other tenants will move in. Those slated for the Sunday move are “frightened, understandably,” Ms. Chism says. “When you've lived in an nursing home much of your life, you’re naturally apprehensive about living on your own." She said police were worried about the safety of the tenants because the apartments are in a higher-crime area. “But they (police) don't realize that in an institution, you don’t own anything for very long because it’s stolen," Kopp said. [Headline] Meetings Encouraging Meetings with a tenant union at Las Casitas have been encouraging, he added, and residents already living there have welcomed the idea of their new neighbors. The problem now is for Atlantis Community to stay alive financially so other young handicapped adults also can experience the freedom of independent living. And there are immediate problems like finding things such as kitchen utensils, bed linen and furniture to make the Las Casitas like home. But optimism about the future is apparent. “When you think of how far we've come in a year," Ms. Chism says. “I'd say there's a lot more to come from Atlantis." - 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!" - 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 (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 (26)
[Headline] Plan Drawn For 14 With Handicaps A workshop to discuss a proposal to move 14 severely handicapped adults from nursing homes to their own apartments will be sponsored by the Atlantis Community, Inc., at 1:30 pm, Wednesday, April 9 in room 807 at 1575 Sherman St. Host at the workshop will be Dr. Henry A. Foley, director of the State Department of Social Services which is monitoring Atlantis’ early-action program with the Denver Department of Health and Hospitals and the Denver Housing Authority. The workshop will focus on the specific roles and relationships of governmental and private agencies in meeting the needs of the seriously disabled. Atlantis Community, Inc., is a nonprofit organization working to create an independent-living facility in the Denver area for the severely handicapped. - ADAPT (25)
[Headline] Atlantis Needs Help The eight handicapped persons living in Denver's Atlantis Community are proud people. They are seeking to sustain themselves to the best of their ability; that's why they are living in the experimental community now called Atlantis. But already, just as their attempt toward some degree of personal independence begins, they find themselves stymied by slow-moving bureaucracy. The eight had moved into a group of apartments at Las Casitas Housing Project in West Denver to establish a degree of self-determination above that offered in the nursing home where they formerly lived. They took up residence June 1. But despite early preparations to make sure their Social Security checks would arrive without interruption, several of the checks have been delayed and the continued operation of the program tor the next few weeks is in question. The burden will be increased by the move of six more handicapped persons July 1 into the Atlantis Community. If their checks, too, are delayed, the program will be in even more serious trouble. Now—through no fault of their own-the residents of Atlantis find themselves asking for temporary help. Persons wishing to help may become a founder member of Atlantis by donating $10 or more to Atlantis Community, 619 S. Broadway, Denver 80223 or 1232 Federal Blvd., Denver. In return, donors will receive Atlantis’ annual newsletter detailing the community's activities and will know that they have helped a worthwhile cause. Volunteers also may aid residents in shopping for groceries, washing clothes and other activities. Persons wishing to help may call 297-3056 or 893-8040. When the crisis is over, the Atlantis residents hope to return to their dream: self-sufficiency.