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ADAPT (635)
Different TIMES, September 24, 1990, p. 6 ADAPT fights for attendant services (Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.) [This story continues on 623 but the text is included here in full, for ease of reading.] “People with disabilities have the civil and human right to dependable attendant services that meet our daily needs in the location and manner of our choice." This simple declaration, made in Denver this summer, signaled the offensive being launched by ADAPT against “the nursing home lobby feeding off peoples' lives." It's ironic, says ADAPT member Mark Johnson. "Here we've finally got our rights now, in a law, and here you have more and more severely disabled people wanting to kill themselves—literally kill themselves—because they're being forced into nursing homes." “That Ken Bergstedt in Nevada [who petitioned the court in May to disconnect his respirator] is literally saying, “l'll end my life before I'll go in a nursing home," Johnson said. “What do you expect when people only have institutionalization to look forward to?" adds actress Nancy Becker Kennedy, one of the group that conducted a hunger strike in Los Angeles in July to protest the cut of California’s In Home Supportive Services. “Their attempts to stay in their homes are thwarted." lt’s the same with Georgia's highly publicized Larry McAfee, who was just put into a “group home," says ADAPT. Even after all the publicity, the State of Georgia will not put any money into funding attendant services in one's own home. And ADAPT is fed up. Recalling the phrase the transit industry used to argue that each city should decide whether or not to put lifts on buses, ADAPT calls the patchwork system of funding in-home services “the old ‘local option’ stuff all over again." “We're sick of it,"says Johnson. There needs to be a national commitment. In California, activists battled for several months to restore their In Home Support Services program which had been entirely cut from the state budget—and succeeded only in restoring it to its former level, which allows a disabled person to hire an attendant only at minimum wage and for no more than eight hours a day. People who need an attendant around the clock, like Ken Bergstedt, have little hope of avoiding a nursing home even in California, often cited as the state with the best attendant services program in the nation. Yet such battles sap the energy of disability activists for the larger fight for a national commitment. ADAPT has modified its former name, “American Disabled for Accessible Public Transportation" to “American Disabled for Attendant Programs Today" to reflect its new focus. ADAPT says attendant services are a right. The group wants the program it's calling for to make attendant services available "based on functional need" rather than “whether a person can work or not." They don't want "employability" to be a "condition for getting services. And they don't want eligibility based on any specific disability, as it is in many states now. They want it to be available “to people of all ages, 24 hours a day, seven days a week, with back-up emergency services."They stress they're not asking for “someone to hold your hand" but are speaking of the realistic needs of people like McAfee, Rick Tauscher, and Bergstedt who need an attendant available around the clock. They also say a program that allows the disabled person maximum control over an attendant is mandatory. Maybe a disabled person won’t want that control; maybe they'll want someone else to handle the paperwork and hiring decisions. That should be the disabled person‘s option, they say. There’s a quality-control issue here, they insist; they want to make sure disabled people get quality care but are allowed maximum say over personal services they receive—which is all too often not the case today as home "health" agencies muscle their way into the home "care" field. They‘re sick of the word “care.” They want a program that doesn’t keep anyone from services because they make too much money; they're willing, they say, to deal with a sliding scale for fees for such a program; but they want it available to anyone who needs it—regardless of income. It's a right, and cost is simply not an issue, they say. Keeping disabled people in institutions is ludicrously more expensive than providing in-home services in this country today. They blame that lack for the problems Larry MeAfee's constantly found himself in; they blame the nursing home industry for siphoning off the money that could go to fund such services. And they charge that home health agencies are nothing more than “the new nursing homes." Home health agencies “take people on Medicare and give them services and then bill them for $60 a pop," says ADAPT organizer Wade Blank. “Then when their Medicare coverage runs out after six months, they drop ‘em." The group says it’s also targeting “the big insurance companies like Prudential" and health maintenance organizations, who they say have a vested interest in keeping the system like it is. “We're saying that ethically and morally, nursing homes are not the place to go," says Blank. “When I see my severely disabled friends, living in their own homes, when l visit them in their apartments, listen with them to records or order in a pizza—and then I see my friends living in nursing homes, wasting away, waiting to die, I get very, very angry,” said Southern California ADAPT member Lilibeth Navarro. A survey of ADAPT members through their newsletter, Incitement, led them to decide to shift the focus to attendant services, said Navarro. And they're emphatic about the term too. “It’s not ‘attendant care‘ anymore," said Blank. “Whenever anybody said ‘care’ everybody booed,“ he added. It is fitting that ADAPT, whose original members came from Denver‘s Atlantis Community, will focus on attendant services. It was that need which led to the start of Atlantis, a “community” of disabled people and attendants. Atlantis “has a neat system,"agrees Navarro, noting that the 24-hour rotary attendant services allows any Atlantis person to have an attendant available whenever it's needed. “We could call an attendant at 11:30 p.m. and have somebody here," she said. “People who are having trouble with attendants can call and get an emergency back-up." Navarro, like others, said she knew of people “who endured abuse because they were afraid to lose their attendant"—"because it's so hard to find somebody, and nobody to turn to in an emergency situation." She related the story of a man whose attendant simply walked out on him and left him, unable even to reach a phone, for four days. “If his father hadn't checked on him, he'd be dead." “Only a national attendant program," she stressed, “will free us from emotional slavery Nancy Becker Kennedy agreed with Navarro. “The linchpin for independent living is in-home attendant services. It’s humane; it gives us a future." The group has sent a letter to Health and Human Services Secretary Louis Sullivan demanding a meeting in Atlanta Oct. 1; they've given Sullivan until Aug. 15 to reply. ADAPT activists from around the nation will descend on Atlanta the first week of October to launch the fight. They’ll be calling for a quarter of the money now going to the nursing home industry to “go into a pot for attendant services." As usual, ADAPT doesn’t expect this to happen without a fight -- primarily from the “nursing home lobby.” “This October," says Blank, “we will serve notice on those groups who are the enemies of a national attendant services program." TEXT BOX: ADAPT will converge on Atlanta — home of Morehouse College, HHS Secretary Louis Sullivan’s alma mater — on Sept. 28 for week-long direct action protest and training. Nationally known organizer Shel Trapp will conduct the session Saturday, Sept. 29. For more information on travel and hotel arrangements, contact ADAPT in Denver at (303) 936-1110. — Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.
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Rocky Mountain News Sunday March 27, 1977 Disabled are limited by society's attitudes By Alan Cunningham PHOTO by John Gordon, News: A young man (Larry Ruiz) sits in a wheelchair in front of a building. The shot shows his whole body and wheelchair and is looking up at Larry's smiling face. (For those who knew Larry, it's a classic Larry smile.) Caption reads: Larry Ruiz is one of those leading better lives of the Atlantis community. Nobody seems to know exactly how many disabled Americans there are - or even how one should define them. In Colorado, the figures are even more sketchy than they are nationally. But one estimate, based on federal statistics, suggests there may be as many as 350,000 disabled citizens in this state. If true, that would mean that 14 percent of the population suffers from some disability. The same projection indicates that as many as 83,000 of these persons as unable to work, keep house or go to school. Gov. Dick Lamm sometimes uses a more conservative figure of 10 percent. But even if that is closer to the truth, it shows that the plight of the disabled is a major problem. It also offers a clue as to why the disabled seem sure to emerge soon as the country's newest civil rights lobby. The have the numbers to make themselves heard - and seen - if they can begin to speak out with a unified voice, demanding their fair share of the American Pie. Until now, they've suffered the fate of most minority groups: invisibility. This is ironic, since most are highly visible if anyone chooses to see them. But for many reasons - not the least a sense of guilt - the able-bodied tend to turn away from those with crutches, wheelchairs and seeing eye dogs. And those who plan public facilities and services often reflect this attitude. It is politically safe for them to ignore the needs of the disabled pretending such persons make up a tiny fraction of the population and thus don't deserve a major share of attention. A myth to be sure. But it is only one of several myths which the Atlantis community, a group home for handicapped persons, in a minority report to the upcoming White House Conference on Handicapped individuals, hopes to destroy. For instance, there is the idea that nursing homes are primarily heavens for the aged and the infirm. The opposite side of that assumption is set forth in the opening chapter of the Atlantis report. Few realize that our nation's institutions also house a great many disabled young persons, some in their early teens. THESE ARE THE victims of our society's response to children and young adults who have muscular dystrophy, cerebral palsy, birth defects, blindness, and neurological disorders, or have survived accidents of varying kinds. But they are there by the thousands, many simply because they were labeled by physicians and psychologists as "retarded" and unable to function normally. It is difficult to imagine a more stifling or inappropriate atmosphere for a young person. It is inhumane to shackle and imprison youthful energy and curiosity into the nursing home routine. Such repressive living leads to anger, hostility and finally to the withdrawal and waste of a battered ego. As the report goes on to explain, the Atlantis group has fought to get more than 30 young men and women out of nursing homes and institutions so as to demonstrate that they can reverse this pattern if given a chance. But, even as it begins to reverse, new problems emerge. Most have to do with obstacles which the world has placed in the way of the disabled person. Again, it has a lot do with society's tendency to act as if he doesn't exist. Funds for rehabilitation programs, both public and private, are so scarce that only a small fraction of the disabled ever benefit from them. A prime example of this comes from State Rehabilitation Director Glenn Crawford, who says his division has determined that 135,000 persons in Colorado are potentially eligible for its services. Yet, in 1976, the division served about 14,300 persons. The figure will inch its way up to 16,000 this year. Such private facilities as the widely acclaimed Craig Hospital also have finite resources. They apply guidelines to decide which applicants will be accepted and which won't. Needless to say, a lawyer whose only disability is the loss of his legs has a better chance than a 19-year-old with no schooling who has lain on his back for most of his life. Funds and facilities for handicapped scarce Those who don't get the help often wind up in the category that Wade Blank of Atlantis refers to as "the losers." He contends that those who work with the disabled have too quickly given up on this group of people consigning them to lives of hopelessness. And he further argues that the implications of this have narrowed opportunities not only for the severely disabled, but for many others with less serious problems. For even those who have escaped the awful label of the "loser" run into obstacles every day. The Atlantis report focuses on many of these obstacles. These are some of the observations: EDUCATION. Many disabled youngsters in the past have failed to get adequate schooling either because they were in institutions or because their families assumed they would never be able to lead normal lives as adults and consequently didn't need to be trained for careers. Even those who went to school often were sidelined into special programs for the handicapped. While academic standards were high in such programs, the students were poorly prepared either intellectually or emotionally, to get along in a world of able-bodied persons. The recommended solution, "mainstreaming"- that is, letting disabled youngsters and adults go to school in the same classroom with everyone else. MONEY. The complexities of the various welfare programs on the county, state and federal level often conspire to keep disabled persons in nursing homes. Counties often find they have to pay more money if a man or woman is living in his own apartments, or in a facility, such as Atlantis, than they do if he or she is in a nursing home. That's because the federal government pays the bulk of the nursing home fee. Likewise, assistance payments are cut off if a disabled person earns more than a pittance in a month's time. The cutoff can be as low as $65. The "maximum level of income"from federal state and county assistance payments is $185. This means many disabled persons are living below the poverty level as it has been defined for other underprivileged groups. The solution as viewed by those who put together the Atlantis report, is to simplify and integrate the complicated payments system. But even more important, to increase payments so that everyone gets the same amount of money whether he is in an institution or out. TRANSPORTATION. The report talks about a number of things here including electric wheelchairs and curb cuts, but is main statement under this heading is that bus systems such as the Regional Transportation District (RTD) should become fully accessible to the disabled. RTD, it contends, has been unresponsive to the needs of disabled would be riders for transportation to work, school and for pleasure trips. Even the special HandiRide service - which RTD often boasts is a frontrunner in the nation - is given poor marks. LAWS. [not legible...] Colorado concerning the disabled in general and the severely physically disabled in particular, the report states. Furthermore, it is not realistic to think that the disabled will get effective legislation passed without having government officials sensitized to the disabled's problems. This may already be changing. Largely due to lobbying by Atlantis, hearings were underway in the General Assembly this week on two bills aimed at helping the disabled. One, a Senate bill now in committee, would allow more Coloradans to receive payments so they could hire home attendants. The other, a House bill, is a "civil rights bill for the handicapped." It would bar discrimination against the disabled. Backers of the latter bill point out that it's needed because the federal civil rights laws, while dealing with the rights of racial minorities and women, have never guaranteed these same rights to disabled citizens. Idealy, says the Atlantis report, Congress and the state legislatures need to weed out laws which are confusing and contradictory, often creating "disincentives"for the disabled to pursue more normal lives. A wholistic approach is needed. JOBS. Virtually every problem mentioned above, plus all the others catalogued in the report, tend to stand in the way of the disabled person who seriously wants to go to work in spite of the lip service paid to the slogan, "Hire the handicapped," many find the doors still closed. The reasons are many and the problems complex. Lack of schooling is a factor. Some disabled persons have languished in sheltered workshops, counting fish hooks and getting paid $10 a month for it, the report says. Others have an education but find that architectural barriers, or the lack of adequate bus service, keep them from getting to jobs they could perform. And attitudes often stand in the way when physical barriers are moved aside. "Perhaps the greatest barrier of all is in the minds of men," the report notes. It advocates more and better training programs, plus affirmative action plans to assure that larger numbers of disabled workers are hired by public and private employers. In an elaborate ceremony several weeks ago, the Atlantis report was presented to Mayor Bill McNichols. But privately some of those connected with the report conceded they didn't expect to see much action on the local level until public policies in Washington and throughout the nation begin to change significantly. That's why the Atlantis group is placing much emphasis on its efforts to make an impression on the Carter administration during its formative period. The time seems ripe for a coalition of disabled groups around the country to launch a concerted civil rights drive on behalf of their "invisible" constituents. And the first test may come April 5, when many groups have threatened to stage a sit-in at offices of the Department of Health Education and Welfare, including the regional office in Denver, if new HEW Secretary Joseph Califano hasn't issued new regulations to implement laws for the disabled. "The disabled have been ignored far too long in this society," declares the Atlantis report. "We are demanding that our rights be addressed. We are giving you, the policy makers, our findings and recommendations on how to solve the inequities in the system. "The next is yours." Such words, when voiced by other groups, have inevitably been followed by major social changes. It seems likely the same pattern will apply here. PHOTO by John Gordon, News: A man lies in a hospital bed, covered by sheets. Photo is very dark and hard to make out. Caption reads: Shooting victim [unreadable] from nursing home [unreadable] he said [unreadable] has been paralyzed since [unreadable].
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The Denver Post - Sat April 30, 1977 PHOTO by Dave Buresh: A fancy room inside the Colorado capitol building with Greek columns and ornately carved doors, is filled with protesters. Several are carry signs: "More job opportunities for the handicapped" and "End discrimination for handicapped." A blind African American man with a an afro, a fancy dashiki type jacket and pendant speaks into a microphone as an older white man in shirt sleeves and a necktie holds a paper in his hand. A woman standing between them looks down at the paper. Caption reads: Handicapped Demonstrate Outside of Joint Budget Committee Offices. At microphone is Don Galloway, with State Rep. Morgan Smith, center and Janet Anderson in middle. [Headline] Handicapped Rejoice at Rights Success by Jim Kirksey Flushed with the success of helping secure enactment of a “Bill of Rights" for the handicapped on Thursday, more than 200 handicapped and disabled Coloradans celebrated and demonstrated Friday at the State Capitol. A new set of regulations that puts into effect a 1973 law was signed Thursday by Joseph Califano secretary or the U.S. Department of Health, Education and Welfare (HEW). Its enactment was credited to the efforts of handicapped persons across the country, and especially to a nationwide demonstration by the handicapped three weeks ago. The law extends civil rights to the handicapped those civil rights guarantee already granted to ethnic minorities and women. THE FESTIVE CROWD gathered on the west steps of the Capitol about 10:30 a.m. to hear a number of speakers congratulate them on their success and to caution them about the future. The gathering - many people in wheelchairs, some on crutches, others with white canes or guide dogs - were told they were responsible for the victory, but were cautioned that it "it is only a beginning." not legible ...the HEW regulations would become a reality only if they are pursued, and the crowd was urged to remain united in the future for that effort. THE SPEAKERS included Don Galloway, executive director of the Governors Advisory Council on the Handicapped; Janet Anderson, administrative assistant to the council; Lt. Gov. George Brown; Wade Blank, codirector of Denver's Atlantis Community; Ingo Antonitsch, executive director of the Denver Commission on the Disabled; Diane McGeorge, president of the National Federation for the Blind of Colorado; and Ludwig Rothbein, of the Colorado Developmental Disability Council. After approximately an hour, the crowd moved inside the Capitol and presented legislators with a list urging them to: -- Promote the "deinstitutionalization" of the disabled with increased state supplemental income payments and home care attendants fees. -- Require school districts to integrate disabled students into their classrooms. -- Legislate removal of architectural barriers. -- Limit the growth of the nursing home industry as the wrong answer to problems of the disabled and handicapped. -- Investigate the nursing home industry and state institutions and prosecute cases of abuse and violations of civil rights. -- Expand affirmative action programs to include the disabled. -- Appropriate $188,000 to restore to Denver General Hospital monies for services to the mentally ill. -- Create a permanent advisory council on the disabled with the funding and power to “make effective changes." -- Establish accessible polling places for the disabled. THE GROUP stood outside the third floor office of the legislature's Joint Budget Committee and chanted, "We want to see the JBC.” State Sen. Ted Strickland, R-Westminister, chairman of the JBC, State Reps Belly Neale, R-Denver, Morgan Smith, D-Brighton, both JBC members and Robert Eckelberry consulted with the gathering for 300 minutes. Strickland, who met with them for about 20 minutes, addressed each of the listed demands by telling of action already taken and assuring them that the JBC hearings in next year's budget would be held in facilities where the disabled and handicapped could take part. Neale said the JBC “does have the best interests of the handicapped at heart," and Smith assured them that he would circulate their demands throughout the legislature.
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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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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."
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[This continues on ADAPT 2 and 3, but the entire text has been included here in ADAPT 1 for easier reading.] [letterhead] Atlantis Community Inc 2965 west 11th avenue denver colo 80204 303 893 8040 [Headline] The Atlantis Story In June of 1975, Atlantis was born as an alternative to the lives that young disabled persons were being forced to endure in nursing homes and state institutions. Early in 1974, a group of concerned disabled people and able-bodied allies began educating themselves to the plight of the young disabled adult. They found that the majority of these young people (some as young as twelve) who were living in nursing homes were virtually trapped in a stagnating, paternalistic prison where civil rights were blatantly violated, medical care was poor and impersonal, and individual initiative and self actualization were hostilely discouraged. The group that later became Atlantis began looking for alternatives to the prejudiced, dehumanizing lives these young people were seemingly doomed to continue. The first attempt was to create a special youth program in a nursing home, the object of which was to provide normalizing educational and social experiences. The program was to a large degree successful in terms of individual liberation, but it soon became apparent that the humanistic goals of the Atlantis group were in direct conflict with the profit making motivation and paternalistic traditions of the nursing home industry. It was then that the Atlantis Early Action Project was conceived - early in 1975. The goals were clear: to allow every disabled individual, regardless of the extent of her/his disability, the same rights and responsibilities of their able bodied peers - the freedom to choose a lifestyle and fulfill personal goals in education, employment, and personal growth, and freedom from a punitive traditional system that stigmatizes the disabled and segregates them from the mainstream of society. The planning started in January of 1975. Public housing units were leased from the Denver Housing Authority in the Las Casitas Development. Funds from the Colorado Division of Vocational Rehabilitation were secured to renovate the apartments and make them accessible to wheelchairs. In June, the first eight residents moved in. All were former 'patients’ in nursing homes, all had the courage and the desire to live on the outside. In a little over two years, Atlantis has grown from eight residents and a volunteer staff to an attendant staff of forty individuals and forty participants/residents. Seventeen of the residents presently live in the Early Action site, which has become a transitional living center, the remainder live in private sector apartments throughout the city and receive services from Atlantis. Traditionally the young disabled person has been denied the right to an adequate education or meaningful employment and has been sent to nonaccredited, segregated ‘special’ schools or to sheltered workshops to count fish hooks or untangle old phone cords for five cents an hour. Those who reside in nursing homes are often provided with no programming at all. At Atlantis, we try to assist the individual in fulfilling whatever goals s/he outlines. At the present time, residents are attending Denver Opportunity School, Boettcher School, and several of the area colleges. In addition, a constitutional law suit has been initiated by an Atlantis resident in an attempt to change existing laws which deny equal educational opportunities to the disabled. With funds from the Denver Opportunity School, Atlantis operates an Adult Education Center which offers individualized courses in remedial basic skills, speech therapy, and Braille. In an employment and basic life enrichment program financed by the Colorado Division of Vocational Rehabilitation, Atlantis provides a variety of employment opportunities to disabled persons and seeks out employment possibilities in the Denver-Metro area. In keeping with the Atlantis Charter, fifty percent of all positions at Atlantis are occupied by disabled individuals. Our experience has shown that merely providing housing and attendant services does not fully equip the disabled person coming out of an institution to lead an independent, self-directed life. For this reason, special programs have been initiated to aid residents in acquiring the skills necessary to take responsibility for their own lives. Home Training Classes, where residents meet in seminars and share ideas and skills, are held to teach how to organize and maintain an apartment. A Consumer Advocate teaches residents how to perform their own consumer activities such as budgeting money, using a checking account, and buying food and clothing. Other advocacy services available include a twenty four hour a day Crisis Hotline, a Financial Coordinator who assists individuals in getting their public assistance benefits, a Housing Information Service, a Legal Advocacy Service, and a Counseling Referral Service. Disabled persons are not 'sick' people. They do not require a 24 hour a day medical staff of nurses and aides to supervise their personal needs and social activities. What is needed is a consistent source of reliable assistance when they want it. In an attempt to break the traditional concept of home health care - Atlantis hires a pool of professionals who are trained and supervised by a Rehabilitation R.N. Attendant assistance is scheduled as it fits into individual routines and responds to individualized needs. Emphasis in health care is on teaching people to monitor their own - to be aware of their particular needs and be capable of getting those needs filled either self—sufficiently or with assistance. Staff is available on a twenty four hour a day basis in case an emergency arises, and can be reached by a call to the Crisis Hotline. The resident is responsible for scheduling baths, meals, etc. There are no rules governing any individual's mobility or social life. We uphold the right of the disabled to take responsible control over their own lives. Disabled people do have special medical needs. Nurses, attendants and physicians who work with them should have this specialized knowledge. The Atlantis attendant staff is trained in areas of special health concern such as skin, bladder and bowel care, and routine medical needs. Atlantis makes full use of existing medical facilities, primarily the Denver General Health System. We are oriented toward rehabilitative activities and any person who has the desire for rehabilitation is given the opportunity to explore it. Many who were diagnosed at an early age as unrehabilitatable have shown tremendous progress when allowed access to therapists and equipment. It is our belief that any disabled person should have the right to choose where and how s/he wants to live. We believe that the same monies that are provided to house someone in an institution should be made available to those who wish to live independently. We are working to this end. At the present time, an institution in Colorado receives upwards of $600.00 a month in tax money to provide custodial care for a ‘patient’. That same person, once out of an institution, is eligible for maximum public assistance Payments of $402.00 a month to support her/himself and purchase attendant services. Many receive less than the full amount. We can find no valid justification for this huge discrepancy which results in the taxpayer supporting the highly lucrative nursing home industry and discourages the disabled and elderly from pursuing independent and meaningful lives. Our philosophy envelopes the ideas of individual liberty and opportunity, and we are aware of the process that must take place. Liberation from the stagnation of institutional life needs to be coupled with a viable process by which disabled persons can integrate themselves into society as self-fulfilled, independent citizens. It is our hope at Atlantis that by bringing disabled persons together, they can, through shared energy and experience, teach and support each other in achieving freedom and growth.
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Rocky Mountain News 6/30/77 [This text contains the story that appears in ADAPT 67 and ADAPT 72, but the entire text is included here for easier reading.] PHOTO (News Photo): In darkened doorway a young woman in a wheelchair (Debby Tracy) appears light against the background, almost like she is glowing. She is a in a motorized wheelchair, the armrests come almost up to her arm pits. Her legs are turned to one side and her feet don't meet the footrests. She is looking up a bit and smiling a big smile; her long delicate fingers play around her control box (for her chair) and her other armrest. Caption reads: Debbie Tracy at home: "I want to go back to school. I like it there." [Headline] Debbie Tracy fighting to acquire knowledge By Sue Lindsay Roll Two years ago Debbie Tracy couldn't tell time. Today she reads the newspaper every morning. Her IQ has increased by 45 points. The source of her improvement was two years in a Denver public school specializing in special education. But Debbie, who was born with cerebral palsy and spent most of her life in institutions for the disabled, is 21 now and Denver school officials say she's too old to remain in public schools. They cite a state law saying the school district is required to educate children only up to age 20. Forty wheelchair-bound young adults converged in front of the school administration building at 900 Grant St. Wednesday to demonstrate their support for Debbie’s right to more education in Denver public schools. Debbie's mother, Elaine Jacoby. says she'll go to court if necessary to fight what she sees as a violation of her daughter's civil rights. She threatened to sue the Denver Board of Education, the state Institutions Department and the State Home and Training School in Wheat Ridge, where Debbie lived for nine years, for misdiagnosing her daughter's mental capacity and depriving her of an education. DEBBIE SEES HER PLIGHT more simply. "I want in go back to school,“she said. "l like it there. I've been learning all kinds of things I didn't know before." Supporting Mrs. Jacoby and Debbie in their fight in the Atlantis Community, an organization which works to remove the severely disabled from institutions and place in jobs and apartments throughout the community. "Debbie is an adult who has been deprived access to the education that would give her the skills she needs to be independent," said Mrs Jacoby, who is divorced from Debbie's father. “l am not asking the taxpayers to finance her until she is prepared for college. But I feel that the Denver public schools owe Debbie more than two years of very basic education before they throw her out into society. I fail to see why my child should be denied what every other child has simply because she is not able-bodied." Mrs. Jacoby said Debbie is a victim of the state's failure to meet the needs of handicapped children. She said Debbie was prohibited from attending public schools and even special education schools because cerebral palsy, a disorder which affects the muscles, had left her without bladder control. For five years, Mrs. Jacoby said she repeatedly tried to get Debbie into public schools. DEBBIE ATTENDED THE United Cerebral Palsy Center for five years. But Mrs. Jacoby said the training there was at pre-school level, directed toward a future in a sheltered workshop. "This was not an acceptable goal for my daughter," Mrs. Jacoby said. During this period, numerous psychological tests were conducted. When Debbie was 10, her mother placed her at Ridge Home. "I thought she would receive educational and social programming that was adequate, but I found again that programs available to able-bodied children," she said. When Debbie turned 19, things began looking up. The state passed the Handicapped Children's Act which, since 1975, has required public schools to provide education for handicapped and disabled persons aged 5 through 20. Debbie moved out of Ridge to the Atlantis Community at 2965 W. 11th Ave. and entered Boettcher Elementary School, a special education facility within the Denver school system. Her progress was remarkable. "When we got her from the Ridge she didn't know her alphabet, she didn't know her colors, she couldn't tell time," said Wade Blank, an executive director of the Atlantis Community. "Now she’s alert and able and eager to learn. She reads the Rocky Mountain News. Debbie had an IQ of 50 when she got out of Ridge. Two years later her IQ is 95. That says a lot to us.” She now functions at the level of a third or fourth grader, according to Blank. “We know she would be a normal functioning adult if only she had been given the opportunity to develop," he said. “Instead, the state shoves everyone into state homes where they vegetate just because they happen to be confined to wheelchairs. It has nothing to do with actual mental ability. " But Debbie is now 21. She has been told that she can no longer attend Boettcher or any other Denver public school. Mrs. Jacoby has appealed this decision to everyone from the Boettcher school principal to Supt. Joseph Brzeinski. LAST WEEK MRS. JACOBY received a letter containing the school officials’ final decision. Debbie could not be allowed to continue to attend Boettcher. But the letter, from James M. O'Hara, executive director of the Department of Pupil Services, suggested that other alternatives existed for Debbie at the Cerebral Palsy Center,the Emily Griffith Opportunity School and at private community agencies. "None of these alternatives are adequate". Mrs. Jacoby said Wednesday in front of the board's headquarters. "They do not meet Debbie's needs. Debbie is not ready for the Opportunity School, but she needs more than the Cerebral Palsy Center can offer. “For 21 years, I’ve put up with empty answers from school officials. I’ve talked and talked to people whose minds are already made up. They aren’t used to persons like Debbie living independently. They're used to them being institutionalized. Debbie can do better than that and I want her to have that chance.”
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The Selma of handicapped rights By Melanie Tem One recent Sunday morning, Kathy Vincent, a 41-year-old Denver woman with cerebral palsy, decided to go to church. She left her apartment, which she had just moved into after spending years in a nursing home, and propelled herself to a No.15 bus stop downtown. She saw "what looked like a wheelchair bus" approaching, and prepared to board it via the hydraulic lift. Instead, the driver told her the lift had been disconnected and, "this isn't a wheelchair bus anymore." The next wheelchair-accessible bus would arrive, he told her, in 30 minutes. "By that time," Vincent later recalled, "church would have been over." That incident has made Vincent a sympathizer with the more militant of Denver's disabled community - led principally by the Atlantis Community and HAIL(Holistic Approaches to Independent Living) - who are demanding that Regional Transportation District dramatically increase the number of wheelchair-accessible buses in its system. Specifically, they want the 89 new "articulated" buses on order to be equipped with wheelchair lifts, and have filed a lawsuit to force the issue. Articulated buses aren't suitable for conversion to wheelchair accessibility, according to RTD spokesman Kathy Joyce. Since they can carry more passengers and travel at higher speeds - their articulated (bendable) design allows them to take corners faster - they are intended for use on heavily traveled express routes. Joyce estimates it takes 5 to 7 minutes to load a passenger in a wheelchair, and another 5 to 7 minutes for unloading - delays which RTD considers unacceptable in a high-speed, efficient transportation system. FOR STEVE SAUNDERS, the issues go beyond personal convenience and articulated buses. Saunders, 31, also has cerebral palsy. He lives alone in a Capitol Hill apartment and works at HAIL. Saunders, along with other demonstrators assembled in RTD offices a few months ago, protested the board's decision to order the articulated buses without wheelchair lifts. Demonstrators blocked stairways and chained themselves to doors, to dramatize their point they said. Saunders was the only demonstrator to accept a summons from the police, an action which guaranteed a day in court. Last month he got his day, but had little opportunity to express his views, as the charges against him were dismissed. But, he said later he views the conflict as “a clear human rights issue. What we're demanding is equal access to public transportation, just like everybody else." Many bus drivers and able-bodied passengers seem skeptical about this view of the situation. While all sides in the dispute agree that so far public reaction to the wheelchair-accessible buses has been positive, there seems to be some sentiment now that the activists have gone too far. Several drivers put it this way: "They keep saying they want to be treated like ordinary people, when the fact is they're not ordinary people and they'd better accept that." Attitudes like that are, said Wade Blank of the Atlantis Community, disturbingly reminiscent of earlier civil rights struggles. He calls Denver, "the Seima of the handicapped rights movement." Similar battles have been or are being waged in Los Angeles, St. Louis, Washington, D.C., and other cities across the country by the handicapped. The 90 percent accessible transportation in Seattle is lauded as proof of what can be done. Blank, who is able-bodied, thinks of himself as a "liberator," and contends the issue of full accessible public transportation is critical as disabled people across the nation organize and develop their power. RTD's Joyce, whose younger sister Heannie is disabled and a member of Atlantis, seems to echo this perspective when she says, "We feel that all this has less to do with RTD’s commitment to accessibility, which goes back a long way and hasn't changed, and less to do with articulated buses than with politics and economics." As corporations bring new money into Denver, she says, Atlantis and HAIL are moving to ensure that disabled citizens will be taken seriously. "They're making a statement," she says. "We understand that. But we can't allow it to change what we do." RTD, she says, is committed to making half of its entire system wheelchair-accessible by July of this year. ANOTHER POLITICAL FACTOR is RTD's first board election, to be held in November. Members of the disabled community are interviewing candidates to determine their willingness to support issues of concern to that constituency. HAlL's Saunders already has announced his candidacy. In other cities, much has been made of the low usage of wheelchair-accessible vehicles by the disabled. RTD's records indicate that of a total 160,000 rides per average day, disabled riders average between 90 and 260 per week. Neither RTD nor the disabled seem alarmed by this fact. Training, they agree, is the key. Saunders and others provide one-on-one training in bus riding to disabled passengers, and RTD trains both drivers and potential passengers. Both sides also seem willing to be patient with the equipment failures that plague any intricate mechanical apparatus. The issue ls complex, emotional and, for the disabled, very personal. Says Kathy Vincent, who can't travel anywhere on her own and has to rely completely on wheelchair-accessible buses: “l never was militant before. But now l don’t have any choice."