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ADAPT (747)
[Headline] Breaking ' em out [Subheading] Why Atlantis's Mike Auberger hates nursing homes [image] [no image caption] If ADAPT members compare nursing homes to jails, it's because any of them have been in too many of both. Mike Auberger, Co-director of Atlantis, Inc., in Denver, has been in over 20 jails nationwide, arrested in ADAPT actions over the past de-cade. In his job with Atlantis, he goes into Denver area nursing homes to spring people who doctors insist can't live on their own. One of the places he frequents is Denver's Heritage Rehabilitation Center, licensed as a long term care facility, where Auberger says "Craig [Rehabilitation Center] sends its losers." He tells the story of one 18-year-old put in the Center whose mother, says Auberger, lives 45 miles away and doesn't own a car. The Center "won't let her take her son out of there because they haven't trained her on tube feeding and respirator stuff. "She takes the Greyhound down, seven days a week, to see her son. But Greyhound doesn't get her there when she needs to be there. They set up meetings for her at 8:30 in the morning. She can't get there on the Greyhound till 11." The rehab center, he says, "sets it up to fail; they set it up to keep him in there. They say they're not going to train her if she's not there at 8:30." "This guy's probably got about a year to live," says Auberger. "When was at home his mom was pureeing food that she cooked; but here they've decided it's easier for them to tube feed." They can bill for more reimbursement that way, he explains. "All he wants is to go home. He knows he's gonna die. He wants his Mom's chile rellenos." "It's incredible," Auberger says. "The place constantly set it up so that his mom was going to miss the meetings and not be able to take him home." To Auberger, the Center's intentions are crystal clear: "They can keep 'em there and bill Medic-aid; that's the whole point." This client got lucky. He got out. "We went in there — we took our lawyer and our doctor; we didn't say anything to the nursing home." Atlantis's doctor, brought in by Auberger, "says there's no reason this guy can't go home." The man, Auberger and the doctor and lawyer he has brought meet in the home's cafeteria. "And all we do is we ask, `do you want our lawyer to represent you?' He says, 'yeah.' We ask him`do you want this doctor here to be your doctor?' " He wants that, too, says Auberger. "Up comes the administrator," says Auberger, relishing the denouement of the story. "We introduce the doctor and the lawyer, and we say, 'he's leaving in a week. You train his mother when she gets in, and if you've got a problem about when she gets in, talk to our lawyer about it." "In a week," says Auberger, "we got him out. He's had pneumonia a 12 THE DISABILITY RAG JULY/AUGUST, 1992 couple of times and been back in the hospital — but he hasn't been in a nursing home. "That's what it's all about," says Auberger, with satisfaction. "Keep-in' em out." At a typical "home," the administration is on the first floor, the patients on the second and third. "If you're a patient there, you can't go up or down; you're on the floor you're on, period." If you want to go down, "you have to get a nurse to take you," says Auberger. "There's no way of getting out of there period — without a nurse. All the doors have alarms on them. "It's like a jail. There's no difference," he says. "And this is modern day treatment." Auberger points out, with irony, that the doc-tor for the Heritage Re-habilitation Center is also the doctor for a nearby prison. People in facilities like Heritage are what's known in the rehab business as "losers," says Auberger — those who don't advocate for themselves. A typical "loser," says Auberger, may be 40 years old when he becomes disabled. "You hold all the preconceived prejudices about disability; you're a c-4 quad and you're depressed and you just don't really want to do anything but exist. You're not the wheelchair athlete, you're not the I'm-gonna-get-over-my-disability type." Auberger charges that places like Craig hold to the approach of "you get over your disability," which he calls "that whole thing of `whitey.' If you don't play `whitey,' you're a loser — it doesn't matter whether your a para or a quad." He suspects doctors send clients from one Denver-area rehab facility to another, shifting them as the allotted maximum time for each facility to be reimbursed for care is used up. A number of doctors have financial stakes in these facilities, he says. "If you look at nursing home structures, what you find is a group of individuals, as a corporation, building a building, licensing it as a nursing home, then selling it to an-other corporation, which they also own, at an inflated price. Then that group will hire the same group" another corporation on paper, but still the same group of people, he insists "as the management corn-pany to run the nursing home. [boxed text] If you don't play `whitey,' you're a loser. "You collect depreciation for awhile on the new building" — as long as you can, he stresses "then you sell it at an inflated price to the second corporation. The second corporation is able to depreciate it again." Then, he says, the management company charges exorbitant rates to the owners to run the home so much that the original corporation goes bankrupt. But that, he insists, is the whole idea: "then they're out from any responsibility." And the management company, which is all the same people any-way, is still running the facility and making money from insurance and Medicaid. "It's all legal," says Auberger, who says the majority of the money that fuels such scams is corn-ing from Medicaid. Nobody ever writes about this, he says, because "it's all legal." Auberger tells of one person who died in one of this group's facilities. For up to a week after the man died, says Auberger, doctors and nurses were "writing care plans" as if he were alive — ostensibly to continue getting Medicaid money. The case is now in a lawsuit. At the same facility, a quadriplegic man was found outside, frozen to death — "a quadcicle," Auberger recalls it bitterly. "Nobody even bothered to notice he was missing." Tube feeding is a sore point with Auberger. One client he just got out had been fed this way, through a tube into his stomach, for over a de-cade. "He hasn't swallowed anything in 11 years,"says Auberger. "He's lying down -- he only gets up once a week so as the food backs up, the acid from his stomach escapes as well. It's destroying his esophagus." He has constant diarrhea, too, says Auberger. "If you ate 24 hour a day you'd be shitting like a wild turkey, too." The man, who was "non-verbal" said Auberger, communicated with him by blinking once for "yes" and twice for "no." The man couldn't use the call button, either. "A nurse came in once a shift to re-hang another bag of food, set the tube feeding — and she's gone." The irony is inescapable: "You've got a machine feeding him, and they're billing for a nurse to feed him. And that's what she does." Auberger points out that the Colorado Nurse Practice Act "says a nurse has got to do tube feeding — and damn if it isn't a machine doing it a machine anyone can learn to run." James Lund vull, a client of Atlantis before he died in an fire set by arsonists JULY/AUGUST, 1992 THE DISABILITY RAG 13 (See "Hate," May/June Rag), had been on tube feeding too, says Auberger, until Atlantis attendants began to wean him from it. Tube feeding isn't a skilled procedure, says Auberger. "If I can do tube feeding, it sure as hell doesn't take a genius to do it." The man in the facility Auberger was visiting had been eating food pureed by his mother when he lived at home and his mother was alive. It "took him almost two hours to eat" but "that wasn't a big deal," said Auberger. "But obviously the nurses decided there's a better way to do things. You can feed this guy by tube--you just destroy his esophagus and ruin his bowels. One day when Auberger visited "it was so bad we couldn't communicate; he had this stuff coming out of his mouth and nose, backing up. I went to get a nurse at ten after two." No nurse came, however, until 20 til four, says Auberger. "She comes in, looks at him, reaches over on his nightstand, gets some kleenex, wipes his nose and mouth, walks out." To Auberger, the obvious problem was that the man needed his feeding level changed; they were giving him "100 drops an hour" which he says is "way too much." But Auberger says the nurse would rather wipe his nose than bother checking on the level of feeding. Auberger insists the stories like these are typical. "I can take you into every nursing home in Colorado; it's no different. Nobody gives a damn." [boxed text] "If I can do tube feeding, it sure as hell doesn't take a genius to do it." [new section] [Headline] Better late than never An 83-year-old-woman heard about Atlantis on a Denver talk show and called them, wanting a way out of a nursing home her family had placed her in 6 years earlier, after a fall. "She didn't break anything; she didn't even hit her head," says Atlantis's Mike Auberger. "She just fell, and her family decided she'd be better off in one." Initially, says Auberger, the woman's family was "irate" that Atlantis had intervened. "We told them how we were going to move her into her own apartment, provide services and so on. They were real skeptical." But a few months later, the family called wanting to get Atlantis services for another elderly relative. They had been won over. "Into a nursing home at age 77, out again at age 83: You don't normally see a progression like that," says Auberger, satisfied.
ADAPT (742)
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ADAPT (746)
Ragtime [Headline] Coming of age in the movement ADAPT has come of age. That was apparent in Chicago this past May, when the group took its protests to the home of the American Medical Association. To diffuse the issue, spokespersons for the AMA had met with ADAPT the Thursday before the protest, trying unsuccessfully to dull the edge by insist-ing that it agreed with ADAPT's demands. AMA spokesman Arnold Collins would later tell the Chicago media, as nearly 300 ADAPT activists held its headquarters at State and Grand hostage, that the trade association of the nation's doctors had no quarrel with the group. Of course, said its director of geriatric health, Joanne Schwartzberg, it was true that the AMA would not be taking before its membership ADA.1)7 s demand that doctors divest themselves of all financial interests in nursing homes and institutions. The issue is only partly about getting the AMA to change, though and those who do not understand that do not understand that, at its most basic, ADAPT is about power the power of disabled people to change society. It may be this power that will eventually fuel the change in the health care debate in this country. "Part of the health care reform agenda in this country must be to define "health" in ways other than the medical model," says Gordon Bonnyman, a lawyer who works with Medicaid issues in Tennessee and who watched, somewhat amazed, as Tennessee ADAPT spearheaded a direct-action effort that saved the state's $1.1 billion Medicaid pro-gram this past spring (see story, page 16). "The people who are best able to carry that message are the people in ADAPT. They say, 'don't tell me I have to go into a nursing home and get 24-hour-a-day care when all I want is somebody to provide attendant 'services' — not 'care.' "A lot of people are still locked [boxed quote] "A movement is driven by anger and its quest for liberation. And that's what ADAPT is." [text continues] into the mindset that 'health care' equates with 'medical," he continues. "If we take a lurch in the wrong direction — and the smart money would say we're more likely to go in the wrong direction than the right one — it will foreclose some options for the disability community," Bonnyman continues. "Nobody else is going to attend to that agenda if the disability community doesn't." ADAPT realizes this, at least on some level. "Chicago was our wake-up call to the AMA," says ADAPT's Wade Blank. "And Sullivan is just a symbol." What ADAPT hopes to achieve, he says, is a national understanding that "every citizen has a right to in-home services if they have a function limitation. Period." Though it may seem a loosely organized ragtag group, ADAPT probably understands more about power than most groups today. This stems in part from its own understanding about what makes people commit to a cause. The people committed to ADAPT give the group its resilience and strength. ADAPT's Stephanie Thomas was explaining this when she said, "I know when I go out on an action, I like Rick James being next to me; I like to see Paulette going down the middle of the street. That's a leadership thing to me. It helps me move; it helps me do what I need to do." The power comes from other people being with you, she says. "I wouldn't be able to do it without the other people. I get a hell of a lot from them. "That's a kind of leadership that's not valued very much in our society," she continues, speaking to other ADAPT organizers. "And I think that sometimes we don't recognize it in ADAPT. That's one of the things that gives us strength, though. It's all of one piece; all a cloth that is woven together. We need leaders and people up at the front of the room, and people to talk to the media; but that is a small part, and it ignores the biggest part of what makes ADAPT ADAPT, of what makes us work — and work more confusingly than other organizations." 32 THE DISABILITY RAG JULY/AUGUST, 1992 How ADAPT works does confuse people. If its leadership seems concentrated, the perception is misleading — and it has mislead police trying, unsuccessfully, to defuse ADAPT demonstrations by picking off the perceived leaders. "They seem confused when that doesn't work, and we just keep on," said one by-stander who watched Chicago cops try just that tactic to little avail. Blank put Thomas's remarks into context. "I'll tell you what the real secret of ADAPT is. ADAPT is not in its structure — because we have a lot of different structures. The secret of ADAPT is the people in its leadership roles." Blank talks about people in ADAPT being "driven by anger and an understanding of what to do with that anger." "If your group is not having success in its local community, it's not, in my opinion, because of its structure," Blank tells one group. "It's because it hasn't gone to the bare bones of the issue. "You can have one person go to an inaccessible restaurant, and lie down in front of it. And every disabled person in the community will see that. That will ring a bell in them. And that's how they'll come to you, by the magnet of you saying `this is what your anger is, too. I'm acting out your anger for you. Here's my number. Call me.' "And you'll find that people will call you. It won't be the people who work for independent living centers, or the quads who work for Easter Seals. It will be the people who have absolutely no voice at all. If they reach out, grab `em when they reach out. Say, 'come down tomorrow and lie down there with me.' "That's what a movement is. That's the difference between a movement and an organization. A movement is driven by its anger and its quest for liberation. And that's what ADAPT is." That power was first apparent to many in the movement who had taken only scant notice of the group they often termed "militant" and "fringe" when over 100 ADAPT protesters massed in the Capitol Rotunda in March, 1990, to demand the leadership of the U.S. House of Representatives move swiftly to pass the Americans with Disabilities Act, which was at the time in danger of being substantially weakened by amendments. ADAPT members held a "chain-in" — locking wheelchairs together in the Rotunda — the likes of which had never been seen from any protest group; 104 were arrested that day (see the May/June, 1990 Rag). As a result of that show of power, [boxed text] "Unless we show the Jerry Lewis images aren't the only ones out there, we will continue to be bound by them." [article resumes] many now concede, the law passed essentially unscathed. Indeed, in a number of materials put out by middle-of-the-road organizations chronicling their work in passing the ADA, the photos that accompany the text are of ADAPT activists. ADAPT cut its organizing teeth on the issue of lifts on buses. Before ADAPT began its ten-year fight with the American Public Transit Association, the trade lobbying group for the nation's public transit operators, the law requiring lifts on buses had been defeated in court and replaced by "local option," which ADAPT called "the ol' states' rights ploy all over again." Before the ADA had passed, ADAPT had won court battles requiring lifts on buses. The ADA public transportation requirements are strong and took effect immediately, unlike other sections of the law. In taking on the issue of attendant services, ADAPT has gone back to its roots, said Blank. The group started in Denver a decade ago when Blank got people out of nursing homes. That story was chronicled in the made-for-TV movie, "When You Remember Me." The current battle will be harder than the lifts-on-buses fight. The AMA and the American Health Care Association, trade group of the nation's nursing home operators, won't hesitate to play hardball. That was apparent in May in Chicago. Sources say the AMA spent weeks trying to figure out "who ADAPT was" and how they operated, and made efforts to keep the group's actions out of the paper and off television screens. That failing, they tried to diffuse the issue with their "we support their demands" ploy. The battle may be harder. But ADAPT has seasoned, too, impressing others with skill that many other social change groups today only wish for. Chicago Tribune reporters Christine Hawes and Rob Karwath wrote that ADAPT was "extremely skilled in using the media" and called them "a group of vociferous activists savvy in street action." No other protest group in the last few years had gotten as much cover-age from Chicago media, said Ora Schub, a member of the National Lawyers' Guild in Chicago, who noted that protests against the Gulf War and more recent anti-abortion protests went mostly unremarked on by the city's press. In contrast, JULY/AUGUST, 1992 THE DISABILITY RAG 33 ADAPT garnered substantial news coverage every day of its action. • The pressure for change, for "de-medicalizing care," is coming from many quarters. Though ADAPT is leading the street fighting, groups like the World Institute on Disability and the National Council on Independent Living have long worked to forge a national attendant services policy. Several health care reform bills now in Congress contain an attendant services component. None of the bills is likely to pass and the chief sponsors of two of them are retiring from Congress. Long-term health care reform advocates like Sen. Edward Kennedy (D.- Mass.) know the attendant services rhetoric; Kennedy held hearings last sum-mer on the issue. Blank believes will happen ultimately — and what ADAPT would like to see, though their public protests hammer at Sullivan to redirect 25 percent of the Medicaid budget and for doctors to "reduce nursing home referrals by 25 percent the first year" is to get a law passed that will establish attendant services as a right for anyone who needs it. What this does is put the issue of attendant services into a context of rights. Whether that is where it belongs is something some people like John Hockenberry (see story, page 30. ) question. But that ADAPT can succeed in doing it no-body in the movement is much questioning anymore. • ADAPT may only be the most visible manifestation of a kind of sea change which seems to have occurred in disabled people and their rights movement in the past year. One can find manifestations of it everywhere. When National Public Radio re-porter John Hockenberry found himself so angry that he had been thrown out of the Virginia Theater in Manhattan before a performance of "Jelly's Last Jam" this past April that he found himself seriously considering torching the place, some-thing had changed. Hockenberry, who uses a wheelchair, decided in-stead to write an op-ed article, which appeared a few days later in the New York Times. He did that, he said, for the pragmatic reason that that was the only way he figured he could ever get to see the show. He figured, rightly, that, once it appeared, management would feel bad about hav-ing thrown him out for insisting that ushers carry his chair up to allow him to sit next to his date (something the manager said they "were not permitted" to do. But, his consciousness raised by that act, he realized, when the offer of free tickets came, that he could not let himself accept them. [boxed text] If you try to live the independence model and pretend everything is getting better, you end up denying reality, says John Hockenberry. Larry Carter, who is involved in the animal rights movement, has felt the change, too. A poster child him-self for the United Fund in 1972, Carter said he had become activist only recently; and that seeing poster child techniques used to support an-imal research — ("where people say, `you don't want to be like that!' ") was his wake-up-call. "Unless we are able to tell people that the Jerry Lewis images aren't the only things out there, we're going to continue to be bound by those." To Carter, the sea change has to do with what he calls "in your face" activism. He, like others, is realizing that "a quick way to do that is to be aggressive, to be, assertive, to not take it any longer — to be in peoples' faces, plain and simple — because that's not the image that people associate with disability." • Why the sea change? Why the sense of power? Is it because the Americans with Disabilities Act exists? Hockenberry is frustrated that rights laws are needed. The "civil rights construct" as he calls it, "encourages an exclusively adversarial notion"; that instead of working on "outcomes," laws like the ADA put disability issues, deci-sions on how to make communities accessible into what he calls "litigation mode." He finds this frightening. As long as the debate is focused on rights, he says, "the disability debate slides into the same kind of face-clawing, self-immolating sorts of adversarial conflicts and meaningless debates that have characterized gender and race issues in America." Even if that's true, it appears that the framers of the Americans with Disabilities Act were on target when they recognized that the ADA was needed as much to make us sense our right to inclusion as it was to make a statement of Congress sanctioning that inclusion. And if that's true, this power in the wake of the ADA is something that's permeating many disabled people on many levels; it's not just something that has come through ADAPT. Still, ADAPT seems its 34 THE DISARM ITY RAG JULY/AUGUST, 1992 most visible manifestation, a place where it can incubate and be nurtured. Hockenberry thinks "there are profound disincentives to mobilize ing as a movement." One of them has to do with the fact that clips are taught that "if you're angry, you're dysfunctional." But another, he believes, is that many disabled people "just don't think they have anything in common with each other." He recalls a recent trip to a "physically disabled ski festival." "They had a big lobster feast at the end, and damn if the arm amputees didn't sit with the arm amputees, and the leg amputees sit with the leg amputees, the paras with the paras and the quads with the quads, the blind with the blind, the deaf with the deaf all of them sitting there tearing limbs off lobsters and eating them. "And I realized, `that's it. There's no "move-ment" in this room there's a lobster feast.' " What Hockenberry saw is what most of us still see when we look across the spectrum of what we, perhaps wishfully, choose to call the "disability rights movement." Despite the power some of us are beginning to identify, other people have yet to feel it. "I was caught in that trap for a long time, thinking that the disability in me was something I had to get away from," says Carter. That, he says, comes from "the whole telethon thing — that looking for a cure; that stuff Paul Longmore says, that we're accepted by society to the ex-tent that we want to be 'normal.' " Carter now says of his recent change in attitude, "it has been a great source of strength for me to say, `this is who I am. And I have cerebral palsy.' " Carter says he's not looking for a cure. "Not looking for a cure" is another sea change that has occurred with many disabled people. Carter says a cure "is not anything I need to make my life complete — and there's the assumption in society that this is what I need. "When people say, 'if there were a cure for cerebral palsy, would you take it?' my question to them is, `what would I have to give up?' And then, if I would have to give up the understandings and the insights though it hasn't been easy a lot of the time — then they can have their `cure.' "And this is something I wouldn't talk about for a long time, because I myself didn't understand it, didn't know if other people would under-stand it. But I identify myself as [boxed text] To Carter, the change h to do with "in your face activism. [text continues] someone with cerebral palsy. It is part of my identity. You take away that, and you take away a part of me." Getting to that understanding "has been quite a process," says Carter; a process that he thinks a lot of people in the disability community haven't yet done; that their disability is something they have not yet "come to embrace. " You've got to come to a point where you say, 'yeah, this is it.' And be proud of it," he says. "Until we do that, we're not going to have the empowerment, we're not going to have the confidence, we're not going to be able to accept ourselves and therefore push for the changes that we require. Until we feel that sense of pride, we're not going to feel on some level that we deserve rights." The mason this is slow in coming, and still doesn't exist for the majority of us, Hockenberry thinks can be attributed to the rehabilitation system and its focus on "independence" as the route to returning to "normal." "Rehab teaches you to be independent — but in a ritualized way," he say. Don't live too far from the mall or be a computer programmer. "Choose your ritual for independence, and then pretend it's true independence, that it isn't a cage. Rehab teaches you to never go near the edge of the cage" — and then you'll behave in a way that lets you pretend the cage isn't there. The problem, says Hockenberry, is that "if you take them at their word on the independence question, you're going to get nothing. It's a lie." Like it has done with African Americans, Hockenberry says, the system values "the person who copes, individually, amidst the adversity." This was the "value you were taught to have," he says: that of a person who copes. "You were allowed, intellectually, to sort out the egregious abuses of your freedom from the silly ones — what you weren't allowed to do was to question the fact that you were committing yourself to a system that required you to live near a mall." Society gives you strokes for coping, says Hockenberry, and it will say you have courage. But you should not make the mistake that this had anything to do with you having courage. It has to do with JULY/AUGUST, 1992 THE DISABILITY RAG 35 nondisabled people's need to be told everyone has courage, he says. "The biggest joke played on me," he says; "is that I thought that by accepting no limitations, I'd live in a world of no limits. And just the opposite has happened." For a long time, he says, he believed there was no comparison between his life and the lives of "op-pressed people." "I thought that what essentially defined me was not the disability, but my background and talents — and to assume that I had something in common with African Americans was to deny them their unique history. And so I left it alone." This, he says, "is the classic crip reason we don't get involved in activism." He tells of working at a home for developmentally disabled people where everyone would insist, "we are people first!" Hockenberry says he thought, "that's the classic rehabilitation model: we are`people first,' as though deep inside us there's this 'person.' " In America, what this really means is "that inside everyone there's this normal white person,"he says. Now inside me I actually could find a white person," he says. But other people didn't see him as normal, he goes on to say. Being "convinced that my wheelchair wasn't part of me, and that deep inside I was `just a person,' " didn't change anything; in fact, it made things worse: "Because in this inane struggle to go here, go there, and do everything" — proving that he was "just a person" "I was denying actual reality." If you try to live the independence model and pretend everything is getting better, "you end up deny-ing most of your existence," he says. Hockenberry has come to these realizations only gradually. But they're realizations more and more disabled people are reaching. They are finally allowing themselves to see the walls of the cages, maybe for the first time. These explanations go a long way toward explaining the strange dance occurring between Jerry Lewis and his Orphans, led by Cris Mathews of Chicago. Mathews, who is the first to admit her group is loosely orga-nized and small, finds herself baf-fled at the effect last year's protest of the Labor Day Telethon continues to have — most of it, truth be told, stirred by Jerry Lewis and MDA themselves, who refuse to let the [boxed text] These explanations go a long way toward explaining the strange dance occurring between Jerry Lewis and his Orphans. [text continues] debate die and act in the true para-noid fashion that make them such perfect targets. Case in point: the first that Mathews and her Chicago cohorts even knew that Lewis had planned a trip to Chicago last spring was when the Chicago Sun Times columnist Iry Kupcinet wrote April 17 that "Jerry Lewis is cancelling all personal appearances [in Chicago] because of the picketing and physical attacks by Jerry's Orphans, a dissident group that is bitterly critical of his alleged patronizing of disabled children." Lewis had coincidentally planned to be in Chicago at the time of ADAPT actions; no one in ADAPT or Jerry's Orphans knew anything about it. The Tuesday before ADAPT was due in Chicago, Lewis had MDA officials and some "Jerry's Kids" fly to Denver to meet with ADAPT in a misguided attempt to persuade them to like the group, an attempt that could do nothing but backfire. ADAPT had had no intention of picketing Lewis's Chicago nightclub act — mainly because they didn't know it was happening. If they had known it, it's still doubtful they'd have done much, since their efforts were aimed at other targets. But MDA's fear of the group seems almost palpable. This is power. Bonnyman explains the power this way: "ADAPT says,`we're going to name the evil. We're going to point a finger. And we're going to stay, and speak truth to power, as long and as loudly as we need to. And we're not going to be bought off.' " Bonnyman says ADAPT is skilled at "taking what people perceive as a weakness and using it as a strength. ADAPT is very sophisticated about understanding that people in wheel-chairs protesting is a very powerful image." If ADAPT are proving to be the wheels of the movement, rolling over opposition, then surely the telethon issue, with activists rolling out under the name "Jerry's Orphans," commands its soul. In our next issue:The Jerry Lewis thing: what's so electric about it? 36 THE DISABILITY RAG JULY/AUGUST, 1992
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This is a continuation of the article that starts on ADAPT 745 and the full text is included there for easier reading.
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45 Arrested as S.F. Protests by Disabled Continue Police arrested a disabled demonstrator blocking doors at the Old Federal Building at United Nclions Plow in San Francisco yesterday. He was among 45 people, many in wheelchairs, arrested during a protest seeking more federal money for home core, rather than nursing home care, for the disabled. There hove been several protests during a convention of nursing home operators.
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737. Photo with Gary Bosworth and Bob Kafka.
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Photo by Tom Olin?: A very large crowd of wheelchair users are lined up in rows facing out from in front of the glass headquarters of the American Medical Association. Tim Craven of Tenn. is in front leading a chant. In the group nearest the camera are Allen ___ in a purple shirt, beside him a woman and then Mike Evin and the possibly Tom Rafferty.
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This story is a continuation of ADAPT 744 and the entire text of thee story is included there for easier reading. This article appears on 744, 738, 733, 728, 724, 748, 743 and 737.
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The Disability Rag, July/August 1992 $2.50 Photo by Tom Olin: A policeman us bent forward doubled up, holding a small woman (Spitfire aka Eileen Sabel) from crawling between his legs and under the police barrier behind him. Spitfire wears a white shirt which says in black letters "Never Surrender." Beside them a man (Bernard Baker) is lying on the street under the barrier holding one of its bars. Under his legs is another wooden barrier that has been tipped over and above his head is another barrier of some kind that says "street operations." Title: On the barricades with ADAPT story, photos page 4 [article begins ADAPT 744 and entire text is included there for easier reading.] Boxed inset: Inside: Dying to get out p.12, John Hockenberry - anger and access p.30
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Photo by Tom Olin?: A huge crowd of ADAPT folks are gathered on the stree and sidewalk in front of the Regional HHS headquarters, a building with ornate lamps on its front. The crowd faces the building and fills the street. Visible are Jimmi Shrode (in the purple shirt) Claude Holcomb (in the forground, hair in braids, with a black and red jacket over the back of his chair. Gene Rodgers (with his back to the building in a grey cap), Frank McGee (in a black Tshirt and ADAPT headband) Tari Susan Hartman (visible just over Jimmi's left shoulder) and dozens and dozens of other protesters. [If you can identify others please contact us so we can include their names.]
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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."