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Hjem / Albumer / The Rolling Freedom Express & Washington DC, fall 2000 54
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[Headline] Tracking MiCassa MiCASSA began as CASA—Community Attendant Services Act sketched out on a paper nap-kin signed by Speaker Newt Gingrich and ADAPT organizer Mike Auberger on Nov. 3, 1996. Gingrich promised to introduce the bill, and having him as the main sponsor was controversial, according to ADAPT's Bob Kafka. "It's important to remember it was right after the Republicans had taken control of both the House and Senate. Gingrich became the second most powerful person in the United States." The bill was introduced on June 24, 1997, as MiCASA, the Medicaid Community Attendant Services Act. Legislative hearings were held on March 12, 1998, but the bill didn't make it out of committee—it died at the end of the session in December 1998. It took until November 1999 to find new sponsors for MiCASA, in part because ADAPT wanted one Republican and one Democrat as main sponsors. Finally Senators Arlen Specter, R-Pa., and Tom Harkin, D-Iowa, stepped forward and introduced the bill as the Medicaid Community Services and Supports Act, MiCASSA. In addition to adding the word "supports," language was also added to clarify the scope of the bill, which includes people eligible for institutional services through Medicaid. This version of MiCASSA died when the last session ended in December 2000 and has not been reintroduced yet. Most likely it will be reintroduced in 2001 with the same sponsors. MiCASSA is seen by the advocacy community as one tool to create more consumer choice in long-term care programs. Another equally important tool is the Supreme Court ruling in Olmstead v. L.C. and E.W. In this case, by a margin of six to three, the Supreme Court affirmed that the ADA requires states to let people with disabilities live in the "most integrated setting appropriate to the individual." The Supreme Court built the Olmstead ruling on the earlier case of Helen L. v. Snider, which the Supreme Court refused to hear on Oct. 2, 1995. In doing so, the court let stand a Third Circuit Court of Appeals ruling that it is a violation of the ADA to keep a person with a disability "unnecessarily segregated" in an institution if a state offers the same services in the community. Together these rulings comprise a "get out of jail free" card for most disabled people who want to move out of nursing homes and who are lucky enough to know lawyers or advocates will-ing to help them use that card. After the Olmstead ruling, the Department of Justice and the Health Care Financing Administration both released letters making clear their interpretation of the ruling—states must develop "Olmstead plans" that detail how they will support people with disabilities in the "most integrated setting possible?: If each state puts an adequate Olmstead plan in place, a person with a disability will be able to receive adequate personal assistance services in all 50 states. "The Olmstead ruling is a clear recall from exile," says Lucy Gwin, editor of Mouth magazine and creator of the Freedom Clearinghouse (www.freedomclearinghouse.com). Since currently the only states with Olmstead plans are those with well-organized disability advocates, Gwin created the Web site to help connect advocates with each other in states that still need to be organized. This comprehensive Web site is chock full of tools advocates need to start working with their state toward creating a strong Olmstead plan. Another possible ally in the push for full implementation of the Olmstead ruling is President Bush. In his New Freedom Initiative he has committed to an executive order calling for "swift implementation of the Olmstead decision." That would mean a total shift of federal Medicaid long term care services away from institutions, allowing individuals to decide where they want their services delivered. To ADAPT, the push for MiCASSA, implementation of the Olmstead ruling and activism for more community services are all part of what is called the "real choice campaign." The overall goal is personal assistance services for anyone who needs them, regardless of age or kind of disability. ADAPT, 303/733-0324; www.adapt.org, adapt@adapt.org. President George W. Bush, The White House, 1600 Pennsylvania Ave. N.W., Washington, D.C. 20500; 202/456-1414; president@ whitehouse.gov. [continuation of a previous article] bers of the American Health Care Association who are still dining and dancing in the crystalline lobby. "But I'm a good person," a confused social worker stammers to activists, her spaghetti-strapped sequined dress sloshed with her forgotten martini. "I'm a good person. Why are you doing this?" After midnight, Kafka starts asking for names of people willing to be arrested. "OK," he says to them. "Just stay put" At 2 a.m. the arrests begin. Be-fore the protest ends, Speaker Newt Gingrich the second most powerful man in the nation scrawls out the main points of what will become the first MiCASSA bill on a paper napkin (see sidebar), which he then signs. Kafka looks back on this 1996 national ADAPT action in Newt Gingrich's legislative district as the one that forced Gingrich to sponsor the future bill. Gingrich cracked because of the street action, says Kafka. [Subheading] Activism in His Blood Kafka, 54, comes from an activist family. Both his parents, Helen and Milton, were union organizers, as were his maternal grandparents. "My Grandma Sara; a Russian immigrant, was the real hard-core in the family," he says. A seamstress, she also chaired an Emma Lazarus Federation of Jewish Women's Club. Named after the Jewish writer whose poem is on the Statue of Liberty pedestal, the Emmas organized in the late 1940s to combat the anti-Semitism which had recently destroyed so many Jews and so much of Jewish culture. They could not forget that the United States not only ignored reports of German death camps when diplomatic pressure still might have done some good, but [pulled quote] "The Washington, crowd is always going to be hesitant to really advocate in a way that might piss off somebody." Bob Kafka [text continues] even sent a boatload of desperate Jews away from America's shores. As a boy, Kafka made signs for his Grandma Sara's Emma club in the Bronx. His boyhood ended when he was drafted in 1966. "Com-ing from a progressive family, going to Vietnam was a big discussion issue," he says. "Should I go to Canada? Should I join the National Guard? What were my options? The family decision was for me to go into the service." Specialist Kafka served in the 188th Maintenance Battalion support for the 11th Armored Cavalry. "Vietnam certainly was a shock to the system of a Jewish kid from the Bronx," he says. He returned to the states and earned a bachelor's in economics at the University of Houston in 1971. Then, he says, "like all good hippies, I hung out at a ghost town in Jerome, Ariz., and built homes right down the road in the beautiful red rocks of Sedona which is where I broke my neck, a car wreck after drinking too much beer," he says. Ironically, Feb. 15, the date of his accident in 1973, was the date he was drafted into the Army in 1966. Kafka's neck was broken at the C5-6 level. After his injury he moved back to Houston, earned a master's in education in 1976 and quickly became director of disabled students services at his alma mater. He rose to leadership in every group he joined, from the Texas Coalition of Citizens with Disabilities where he met his wife in 1984—to the Southwest Wheelchair Athletic Association. Kafka calls himself a closet bureaucrat. His hobby is study-ing regs—he takes them apart like an experienced mechanic tinkering with his car—a word change here, a sentence added there—to see if he can make them run smoother. In 1984 he focused on transportation regs. As president of the Texas Paralyzed Veterans Association he pushed for all public transportation to be accessible, not just the vans that drive old ladies to grocery stores. But meetings, memos and tinker-ing with policies weren't putting lifts on buses. He still couldn't catch one down at the corner stop. Frustrated, Kafka signed up for the American Disabled for Accessible Public Transit training in Washington, D.C., scheduled at the same time as the American Public Transportation Association's annual conference. This October 1984 "training" was the first ADAPT action outside of Denver. Chanting, "We will ride," the band of 42 activists used their bodies and equipment to block APTA conventioneers from their cordon bleu luncheons and champagne banquets—as they would continuously at each APTA national convention for six years until the ADA passed, mandating lifts on all new buses. "It blew the cobwebs away," says Kafka, about his first pro-test. Freedom would be won on the street, as he was taught as a child, and he wanted to be part of it. [Subheading] Showdown at Cincinnati Later in 1984 Kafka and Thomas co-founded Texas ADAPT to bring to their home state the same changes ADAPT pushed for nationwide. Then in 1985, he spent three days in the Los Angeles County Jail for disrupting APTA's conference. "They put us in L.A. blues and we were on the same floor as the Hillside Strangler," he says. Next came the May 1986 protests in Cincinnati, which Kafka calls one of ADAPT's most intense. Cincinnati Judge Albanese, known for ordering the arrest of a local museum director on obscenity charges the museum displayed Robert Mapplethorpe's controversial photos—told ADAPT if they came to Cincinnati he'd throw them in jail. ADAPT stayed at a no-star Kentucky hotel right across the Ohio River from -•.. Cincinnati. The too-small conference room the activists met in had a window for a wall on one side. Across the way they could see men in suits with a tripod taking pictures of their meeting. Ignoring the plainclothesmen, Wade Blank, one of the found-ing members of ADAPT, and Auberger laid out the Cincinnati situation. Sixty-seven buses ordered under the previous mayor had had their lifts welded shut, rendering them useless to wheelchair users. Reason given: liability and safety. Blank and Auberger were briefly interrupted when three local disability advocates rolled in. They asked ADAPT to please leave before all their good work was undone. "What good work?" they were asked. "At least they're talking to us," the local advocates answered. The activists laughed them out of the room—in ADAPT's view, all talking accomplished for the locals was having their lifts welded shut. But the locals feared ADAPT's "slash-and-burn" tactics might make their situation even worse. True to his word, when ADAPT hit Cincinnati, Judge Albanese threw them in jail. In the end only three actually served the eight-day sentence Kafka, Auberger and George Cooper, who was director of advocacy for the Texas PVA. At the October 1986 ADAPT protests in Detroit, Cooper's picture appeared in the news-paper. One of the national PVA vice presidents saw it, flipped out and quickly push-ed a resolution through the national PVA's executive committee saying there was to be no further association with ADAPT or any other group that uses civil disobedience. Texas PVA, under Kafka's leadership, appealed that deci-sion at a national membership meeting. Kafka's fiery speech defending ADAPT to the national membership included references to great past leaders such as Henry David Thoreau and Gandhi. "Civil disobedience is nothing to be ashamed off!" he cried. This marked the first time he defended ADAPT to an-other national disability advocacy organization—his peers. He failed. That resolution is still on the PVA books. In the end PVA did what even Cincinnati Judge Albanese failed to do—it proved to Kafka how deep his commitment was to activism and ADAPT. "That incident cemented in my mind that a group like ADAPT needed to continue and grow. The well-funded PVA and other Washington, D.C. crowd groups were always going to be hesitant to really advocate in a way that might piss off somebody," he says. [Subheading] Pushing the ADA After his speech to PVA's national membership, Kafka steadily rose through the ranks in national ADAPT, eventually being recognized as one of the top three leaders and commanding a dedicated follow-Ling from advocates like Woody Osburn, executive director of the Ohio Statewide Independent Living Council. Kafka's sincere belief in what he does won Osburn over during the 1989 protests in Atlanta. Nonstop rain was the lead story on the nightly news when ADAPT rolled into the Atlanta federal build-ing and refused to leave. The federal officers drove stakes into the ground outside the heavy doors to keep them from slamming shut each time they pulled an activist out of the lobby and into a puddle. A concerned Blank called disability activist Evan Kemp at his home in Washington, D.C., for help Kemp was chairman of the EEOC at the time. Kemp then called White House Counsel C. Boyden Gray, who made an official White House call to the federal building in Atlanta. "All of sudden," recalls Osburn, "the same cops that threw us out were saying, 'Come on back in."' [image of Kafka on the ground being handcuffed] They spent a damp, clammy night on the lobby floor. Then—victory! Representatives of the Urban Mass Transit Ad-ministration came into the lobby with a letter saying every new fixed-route bus would have a lift. But the protests weren't over yet; Greyhound still didn't agree to lifts. The tired activists dutifully march-ed over to the Greyhound station for more protesting. Os-bum, a quad, says he didn't want to be arrested because he wanted time to sleep and get cleaned up before his flight the next morning. But then he saw Kafka. "He was really serious and shouting at me, 'There's a bus in the lot up there and you have to go stop it because it's getting away!' I gave him my feeble excuse of have a plane to catch.' He swore at me and went down the line to find someone else to shame into doing it. So I went There was just one other person up there, but she and I stopped that bus." Meanwhile Kafka and some others stuffed themselves into luggage compartments. Now Greyhound had to remove all the luggage on each bus to make sure there wasn't a per-son in the compartments. "I was arrested along with Bob and all the other people," says Osburn. "I didn't get out until 3 a.m. and got on the plane smelling the way I did." The bus war climaxed on March 12, 1990, when hundreds of ADAPT activists left their wheelchairs and crawled up the U.S. Capitol building steps. The next day Kafka and over 200 activists refused to leave the Capitol rotunda 104 were later arrested. This was the "Wheels of Justice" action that many think gave the ADA the last push it needed to pass as strongly as it did. [Subheading] ADAPT Changes Focus With the passage of the ADA, which mandated lifts on. every bus, ADAPT changed its name to American Disabled for Attendant Programs Today and went after the nursing home industry, treating the American Health Care Association conventions to the tactics refined in the bus war. Kafka's acumen at understanding policies and regulations came into play as the activists were thrown from the relatively simple world of, "Just put a damn lift on it," into the complex world of Medicaid funding. At first the cry was "Redirect!" Simply put, ADAPT wanted 25 percent of the Medicaid funds currently allocated to nursing homes to go to community-based services instead. Policy wonk Kafka says, "As we started to do the protests against AHCA, it became real clear that we needed to go .to the next level in terms of that demand. We needed something more concrete." Thus came the first draft of the Community Attendant Services Act—CASA, introduced into Congress by Newt Gingrich as the Medicaid Community Attendant Services Act—MiCASA In time, MiCASA was further refined into MiCASSA, the Medicaid Community Services and Supports Act. [boxed quote] Kakfa is the craftsman of the"pitchfork" approach to advocacy. ADAPT and street action is one tine, the ADA is another, rulings like the Olmstead decision constitute another and pushing for MiCASSA is the fourth. Says Kafka about the extra "S" in MiCASSA: "The advocates in the cognitive and aging communities kept saying and kept thinking that the bill only addressed people with physical disabilities. So we sat down with advocacy groups for people with DD, and older people, and we rewrote the bill. Fundamentally, it's the same approach, but stronger." MiCAS-SA was co-sponsored in the latest legislative session by U.S. Senators Specter and Harkin. Kafka is the craftsman of the "pitchfork" approach to advocacy. ADAPT and street action is one tine, the ADA is another, rulings like the Olmstead decision constitute another and pushing for MiCASSA is the fourth. "A pitchfork with one tine would be pretty weak," he says. "You need all of it" Kafka also says that with the new president it's vital that critical mass be reached at the state level through protests like the one he and Thomas led years ago against then-Governor Ann Richards in Texas—they won a nursing home waiver by refusing to leave Richard's office until she agreed to meet with them. After Richards, of course, came Bush. Kafka says that even though state-level advocacy's always been important, now it's more so. "It's clear from Bush's positions and what he did here that there will be every attempt to give states more flexibility to move whatever there can be down to the state level," he says. "So we have to become really, really powerful in our own states." [Subheading] The Face of Freedom A self-described political junkie who has no private life, Kafka doesn't like to talk about anything personal. He'll talk about anything else you want to talk about. Ask about politics—is Bush as dumb as people say? "No, he's not dumb. He's disengaged." Ask him about sports and the former Bronxer will tell you, "I'm still a Knicks and Giants fan, and a Yankee hater." Ask him about his father, and he'll tell you how they got Gingrich to sponsor the first MiCASSA bill. Ask him again, tell him word's out that Kafka's own dad could have ended up in a nursing home but Kafka and his wife, both using wheelchairs themselves, wouldn't let it happen. Eventually he'll tell you that after his mother passed away a few years ago, his dad had a stroke in his Florida home and couldn't live alone. So he moved to a Texas assisted living facility to be closer to his son. It was his dad's choice, Kafka is quick to tell you, and he had his own little apartment. Then his diabetes flared up, he lost both his legs and the assisted living facility told him he couldn't stay there anymore. "He didn't want to stay there either," says Kafka. So Kafka and his wife did what so many other baby boomers won't or can't do for dad. They brought him into their home, helped him get in-home services through the Medicaid nursing home waiver and in the last couple months of his life also helped him get hospice services. Not every state has a nursing home waiver, especially not one that people older than 60 are eligible for. The Texas waiver was fought for, and won, by Texas ADAPT years before Kafka's father became disabled and needed it. Because of ADAPT and Kafka's Willingness to lead, thousands of Texans—including his father now live and die free. For Kafka, that's not enough. All Americans must have that same right to decide their own destinies and choose where they call home before he, and ADAPT, move on to another front. The next national ADAPT action is May 12-17 in Washington, D.C. APRIL 2001 39
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