(...Continued) THE STATE OF THE STATE Since no one from Tennessee State Government had showed up at the rally to accept the Number One Worst State award, bright and early on Monday ADAPT marched over to the State building where Governor Sundquist has an office. We wanted to talk with him about his state's dubious distinction and about the state long term care funding (which is increasing for institutions while the rest of the nation works to increase community based funding). We also wanted to talk about his fixing the lousy 12 year old "pilot" waiver program which is available in only four of the over 90 counties in Tennessee and has such restrictive eligibility requirements it is easier to get into a nursing home or move out of state than get attendant services. ADAPT marched across the huge expansive plaza on which Memphis' government buildings sit and straight into the State building. Hundreds of activists passed the security and took the elevators up to the 12th floor Governor's office. Packing themselves into every nook and cranny, the protesters sought to make room for as many others as possible. The elevators were finally turned off, but the huge stone and glass lobby served as an echo chamber for the chants of those below, so that even 12 floors above it was abundantly clear more folks were waiting below. For several hours state and local police tried various shows of force to try and intimidate ADAPT into leaving. They marched around in uniforms in formation. They made announcements over loudspeakers about impending arrests. They carried giant bolt cutters up 12 flights of stairs. They pulled on the latex gloves so common at arrest scenes these days. They pulled in lift equipped vehicles of various shapes and sizes and left sirens blaring and lights flashing. At three o'clock the Governor ordered the building be closed. All state workers were told to leave. Then suddenly, and in formation, the police were gone. The trucks and sirens and lights and bolt cutters and latex gloves -- all gone. ADAPT had called their bluff. Not all of ADAPT's troops had headed for the plaza level and elevators that morning. One group had headed for the back of the building on the street below, and the garage doors. All day there had been a dance of negotiations as non-state vehicles on non-state business were allowed to pass, like County vehicles, while state work related vehicles were held at bay. At four o'clock, the activists still on the plaza level formed up and marched down to join with those on the street level below. State police forced shut the doors to the state garage, but the county garage next door remained under ADAPT control, and when we learned the Governor would let no food or medications up to those inside. We were ready to turn on the heat in return. No cars in or out of the county garage till the County put in a call to the Governor was the position of the day leaders. Though County officials at first refused, eventually the County Mayor agreed to try, but had no success. So we agreed to hold a press conference, together with the City Mayor, and in a show of good faith 50 of the protesters from the 12th floor agreed to come down. The press conference with the Mayor of Shelby County and the Mayor of the City of Memphis went like a charm. Both Mayors, though not supporting ADAPT's tactics, standing behind ADAPT as they spoke to a bank of reporters, said the issue was a critical one that the Governor should address, and that they were trying to get the Governor to allow food and medications upstairs. The Governor was lone man out. We marched back up to the plaza level and as the moon rose we divided up into shifts to maintain our vigil of support for those 103 still inside. In the morning we reconvened in front of the state building for our meeting and found the Governor had declared the building closed for another day. Sundquist was obviously willing to let people with disabilities hang. By maintaining the funding bias toward institutions and slashing any new funds for community based services in the last state legislature, he was in effect sentencing them to nursing homes without choice, without hope. Meanwhile he had collected contributions from this industry during his last election campaign. Some people sell their souls for power, Sundquist sold other people's liberty. But his actions toward ADAPT and on this issue had exposed attitude toward people with disabilities, young and old. His policy of "let them rot" was more public than ever before. On talk radio shows people in nursing homes were calling in asking how they could get out, how they could join us. Folks had stopped by the vigil and our hotels to tell us of their support. Local advocacy groups were calling the Governor's office, calling other local elected officials to support us, dropping off water, and stopping by to show their support. We had more work to do though, and another important message to send. At noon, roughly 24 hours after the visit had begun, the 103 came down for a press conference. Day three started much as the others with a march up to the Government Plaza. The State building was now surrounded by State troopers and they didn't look friendly. But no problem. We were not headed there that day. We were targeting the other culprit in the "states' rights" fiasco of a policy on long term care: the feds. The Clinton Administration's tepid - at best - support for community based services has long been a point of frustration for ADAPT and others who have even the faintest belief in "liberty and justice for all." At the MiCASA hearing the representatives from HCFA and Health and Human Services were probably the weakest link, even our opponents were a bigger help to the cause than these folks. Well it just so happens that the Administrator of HCFA Nancy Ann Min DeParle, came to her job direct from directing Health and Human Services, in guess which state... And the second in command in the Clinton Administration, and hoping to be his heir apparent was Tennessee Native Son Al Gore. So not only was Tennessee taking gross advantage of federal policies to exploit her citizens who need support services, the state was serving up its leadership to direct national policy as well. ADAPT's plan was simple but effective. Encircle the building and make it a nursing home for a day. May in Memphis is not a cool time, especially hours in the hot sun. But tired as ADAPT's activists were they held firm. Tussles at doors with saw horse barricades, only furthered the proof ADAPT was there to stay. Our demands were faxed to the Vice President, along with the message that if we did not get some kind of response by three we would have to escalate. What we had in mind was blocking the street level entrances, but at 2:45 ADAPT history was made when an abandoned ammo box was found in the bushes by the federal building. A bomb scare. Sceptical at first leadership was shown the box, and soon we learned that two of our members had been approached by someone who told them there was a bomb in the area. w Ten Worst States for Personal Attendant Services 1. Tennessee 2. Mississippi 3. Louisiana 4. Missouri 5. Georgia 6. Illinois 7. Indiana 8. Florida 9. Ohio 10. Kentucky Dishonorable Mention 1. Washington D.C. 2. Texas 3. Pennsylvania 4. New Jersey 5. Arkansas Information used for ranking the Ten Worst came from a variety of sources including personal stories and recommendations of advocacy organizations. Two sources we used were: The State of the States in Developmental Disabilities published by the American Association on Mental Retardation and State LTC Profiles Report published by the Institute for Health Services Research, University of Minnesota. Tennessee l 94.8% of long term care spending goes to nursing homes. (1992) l Fiscal effort for community services for people with developmental disabilities 36% BELOW national average. l Total MR/DD spending 38th in the country. l Spending for congregate facilities increased by 41% in Tennessee while spending for congregate facilities nationwide has declined 12%. l 50th in per capita spending for home and community-based care for people over the age of 65. l Number of people with developmental disabilities living in nursing homes increased 25% (1992-96) - nationally a 13% decrease. l 50th in spending on home and community-based care as a percentage of long term care expenditures. l Commitment to home and community based services ranked 50th by the Institute for Health Services Research. (For specifics on other worst states, contact ADAPT of Texas 512-442-0252 or adapt@adapt.org) Philly Crashes Habitat for Humanity Party ADAPT of Philadelphia kicked off May Day by crashing a party held at the historic 30th Street Train Station for Millard Fuller, National Exec. for Habitat for Humanity. Twelve activists braved a rainy night to join a cocktail party/reception/dinner to honor Fuller for his work with HFH. Philly ADAPT formed a noisy gauntlet that party goers had to walk through. Holding signs demanding equality in housing and razzing Habitat for inaccessibility and for all those lovely wheelchair accessible homes that they never built. Party goers were visibly distressed and engaged in behaviour unbecoming to ladies and gentlemen in evening dress. The Amtrak Police tried to intervene by threatening arrest. We told them they were more than welcome to arrest us. Undaunted, we stayed our lines until Sen. Jack Kemp (former HUD Secretary) and Millard Fuller came out to speak with us. We issued demands that Habitat for Humanity live up to the Visitability standards that were originally attached to the HUD money they so willingly accepted, put information regarding Visitability on their web page and that Fuller try to facilitate a change of attitude in the HFH leadership. We also demanded that HFH work with us to meet the housing problems in Philadelphia. Fuller and Kemp tried to assure us that they were on "our" side and being good Christians we could trust them. However, talk is cheap and action is worth millions. Local HFH Directors who wouldn't give us the time of day came to fawn over us and promise us meetings. So, we shall see. Meanwhile, Fuller couldn't get it through his head that zero step entrances are better than steps and ramps and that Visitability is a win-win situation. Coming to an impasse, we stayed until the party began to break up around 11:00 PM. Harrisburg ADAPT gives Greyhound a bit o' Blarney Harrisburg ADAPT celebrated St. Patrick's Day in the time hon-ored ADAPT fashion: we donned our shamrocks, our green, and our signs that read, "It'll take more than Irish luck to lift ME up those steps," then marched to the local Greyhound Bus Terminal. Singing, "We Will Ride" and "Let Us On The Bus," Seventeen ADAPT members kept the police at bay, and the buses parked in bay, for over two hours. It couldn't have happened without the unwitting assistance of the Harrisburg Police Department -- they blocked the driveways better than we ever could have done with our numbers. After two hours of posturing and threatening arrests, the police dutifully delivered our demands to the on-call manager at the terminal, who dutifully delivered our demands via fax to William Brown, a Greyhound Manager in Philadelphia, who dutifully delivered our demands to Greyhound CEO Craig Lentzsch in Dallas. Not bad for a small town on a slow day. When Dallas informed Philadelphia, who then informed Harrisburg, that Lentzsch would not immediately agree to a meeting, two ADAPT members refused to move out of the streets. Linda Anthony and Lou Diehl were both arrested and taken to the local lockup. When the demonstration ended, our group marched over to the police station to cheer our captives upon their release. They want improved transit service by Kevin Haney, Daily News Staff Writer Center City traffic tie-ups and regional rail delays greeted holiday shoppers yesterday as a group of about two dozen disabled people protested near the Gallery shopping mall. Their target: the Grinches at SEPTA, who, the group said, have failed to provide adequate transit service for the handicapped. By the end of the day, about a dozen were arrested on charges of disorderly conducted and released, their attorney said. The protesters, many of them in wheelchairs, blocked Market Street outside SEPTA's offices for about three hours. The protest forced the closing of Market Street between 12th and Juniper streets, and caused traffic tie-ups on surrounding streets for three hours. Unsatisfied with a visit by SEPTA General Manager James K. Leary Jr., they blocked the doors to a Paoli-bound suburban rail train late yesterday afternoon, trapping it in the Market East train station. The protest ended about 6:30 p.m. when police arrested members of the group on the train platform, said their attorney, Stephen Gold. The protesters are members of ADAPT, a group pushing for better handicapped access to public transit. They demanded SEPTA cut the waiting time for paratransit van rides. They said paratransit services hired by SEPTA often required reservations several days ahead of schedule, which the group said was unreasonable. They said drivers were often two or three hours late picking up people from jobs. The protesters had started their demonstration around 10 a.m. on Market Street near City Hall, then at lunch time moved two blocks east to SEPTA's headquarters at 1234 Market St. After a short time outside the offices, they rolled into the street, blocking traffic and surrounding a Route 33 SEPTA bus outside the Marriott Hotel. Cassie James, the protest leader, got out of her wheelchair and lay under the bus's front bumper, while other protesters decorated the bus with tinsel garland, a wreath and Christmas balls. Police officers from the civil affairs unit watched. The group, which has staged several protests in recent years, demanded to meet with Leary. He arrived at 3:20 p.m. Leary told James and others that he was trying to upgrade paratransit service by buying 146 new cars and vans with on-board computers and hiring a new contractor to run the paratransit service. But the 20-minute curbside discussion resolved nothing for the protesters, who said service remains shoddy. Last minute update: Greyhound fights dirty, tries to divide our ranks. Apparently, Greyhound and its flacks have gotten to a number of groups who are doing us tremendous harm. We need to counter this assault immediately. As most of you are aware, the ADA regulations governing access to over-the- road buses like Greyhound are due to be out in final form by September 15th. The disability community overwhelmingly supported the first option listed in the proposed regulations which would require full access within 12 years and all newly ordered busses between now and then to be accessible. Greyhound obviously supports the status quo and opposes making their busses accessible. Even though the comment period for proposed regulations is over, a number of groups have sent very damning letters to US DOT Secretary Rodney Slater arguing that if Greyhound has to acquire lift equipped vehicles, then rural routes will be cut and fares dramatically increased. Sound familiar???!!! It should. This is the very same argument that Greyhound made back in '90 when the ADA was passed - that if they had to get lifts they would have to cut back on rural routes and raise fares. Well guess what? Greyhound has been exempted from access requirements since '90 and they cut back on half their rural routes and raised fares anyway. It is simply too bad that this same old tired line of bull has been swallowed by such groups as the Southern Christian Leadership Conference, the National Council of Negro Women, Martin Luther King III and a handful of state legislators from Arkansas. Here's hoping Secretary Slater keeps his common sense about him and bases his decisions on facts not fear mongering. We'll hold our breath till the 15th. ADAPT Visits NGA in Milwaukee by John Kennedy I recently helped someone get out of an institution (so-called nursing home). A "WELCOME HOME" sign and balloons decorated the front of his REAL home on the day he finally got out. Fortunately, this man lives in Kansas, a state where going home was an option. In many states, the only option is to live in a nursing home. Not for long. ADAPT (American Disabled for Attendant Programs Today) was in Milwaukee, Wisconsin for an action on August 1st. There were about 60 of us lead by Steve Verriden of Wisconsin ADAPT. Four of us were from Kansas including myself. Why Milwaukee? The National Governors' Association (NGA) was having its annual meeting and we demanded a meeting between ADAPT and the Executive Committee of the NGA.We also had 10 awards to present to the governors of the 10 worst states...worst at giving people the freedom to live where they want. The night before the action some of us painted 10 urinals with gold spray paint. Fitting prizes for governors who keep the gold flowing to the nursing home biz. Morning came. Perfect weather. About 8 vans lined up in front of the hotel. I was one of the drivers. Here we go! My first ADAPT action. I was on fire! I knew that it was a moment to remember. We drove to downtown Milwaukee and met in a small park one block away from the big NGA meeting at some convention center. The police arrived within minutes to tell us that we couldn't be on the same side of the street as the governors. I guess we weren't going to be able to hand deliver the golden urinal awards although there was some discussion of tracking down the 10 governors at their hotel(s) later in the evening. That never happened. Before the action even got started we gathered around and Steve told us that the Executive Committee of the NGA agreed to meet with ADAPT on September 18. We cheered but none of us wanted to just pack it in and go home. We made our way over to the convention center and lined up along a sidewalk across the street. We chanted, handed out MiCASA info and presented the golden urinals. 10 ADAPTers had to accept them because the govs were absent. I took the one for Missouri and hope to hand deliver it someday soon. The demonstration lasted for hours. I was thrilled to have the opportunity to tell people passing by about MiCASA and the existing working system in Kansas that gives people freedom and saved the state 24 million dollars last year. It really got fun when I was interviewed by a Madison radio station. It wasn't hard to talk about Home and Community Based Services since I'm in the thick of it everyday at work as an independent living counselor. I was proud to be from Kansas. We have a great reputation. Later in the afternoon we took a lunch break. None of us wanted to stop so we planned to be present at the governorís evening cocktail party at some swank lakefront hotel. Again, we were across the street. We chanted "PEOPLE ARE DYING ...SHAME ON YOU" and "UP WITH ATTENDANT CARE...DOWN WITH NURSING HOMES." There were lots of police around...on foot, in cars, on horseback. That's because we are POWERFUL! I have friends trapped in nursing homes in Illinois (one of the 10 worst states). I was angry and I could finally express it. There is a difference between chanting and chanting with anger. Gov. Edgar of Illinois was at a party across the street. My friends were dying in nursing homes in his state. I let him know how I felt. It started to get dark. We filled the vans to head back to the hotel. To our surprise, before we left, Gov. Tommy Thompson of Wisconsin came across the street and talked to us. He didn't have much to say. He told us he was the host and was "in charge of fun". Gov. George Voinovich of Ohio (Chairman of the NGA's executive committee) came out and talked to us for around a half hour. He mainly spoke about what his state was doing and there was also some debate about ADAPT's tactics. I only heard bits and pieces of the conversation because I volunteered to lead the other vans back to the hotel. We got back to the hotel and celebrated. Great action! I knew this was only the beginning of my active involvement with ADAPT and the disability rights movement. I'll never forget it. I'm looking forward to the day MiCASA passes. Then we can line up outside institutions and chant "We're ADAPT...you're NOT trapped...get used to it!" Update on National Governor's Association The NGA Executive Committee has agreed to meet with ADAPT on Sep-tember 18, 1998 in Washington DC. "We welcome the opportunity to meet with you to discuss mutual policy concerns" stated Governor George Voinovich of Ohio, NGA Executive Committee chair in a letter to ADAPT. "We would view this meeting as an opportunity for a good faith discussion of areas of mutual interest, such as eliminating the bias towards nursing home care that pervades the Medicaid program." The meeting, sought by ADAPT activists, is the culmination of two years of ADAPT protests against the NGA and the many Governors that refuse to implement Medicaid waivers that would allow people with disabilities - young and old - to receive needed services in their homes instead of nursing homes and institutional settings. Guess What?!? They canceled the meeting! Some pitiful excuse about there wasn't going to be enough governors, even though they set the date. Doesn't seem wise in light of ADAPT's reputation. We'll see... DEPARTMENT OF HEALTH & HUMAN SERVICES Health Care Financing Administration Center for Medicaid and State Operations 7500 Security Boulevard Baltimore, MD 21244-1850 Dear State Medicaid Director: As you know, HCFA has actively promoted the use of Medicaid Home and Community-Based Services (HCBS) Waivers to allow individuals to take control over their own lives while receiving supportive services in the most integrated setting. I am pleased to note the number of waivers which now seek to promote active consumer participation in all areas of the program, including needs assessment, service planning, provider recruitment and choice, and in the oversight of the quality of services furnished. The purpose of this letter is to strongly urge you to continue this effort to involve consumers in the decisions which affect their lives. It is particularly crucial to make available appropriate HCBS options to all persons who are currently institutionalized, or at risk of institutionalization. We believe it is essential to enable and support individuals to make informed choices in the arena of long term care, and to the extent possible, select institutional placement or HCBS. This will allow you to use scarce dollars to provide services in as nonmedical consumer-driven mode as possible. It will also enable you to target resources in a manner which responds to the needs of the individuals who use them, and to develop cost-effective methods of providing services to program participants. We believe that an individual has the right to assume risk, commensurate with that person's ability and willingness to assume responsibility for the consequences of that risk. This, of course, does not abrogate a State's statutory duty to ensure the health and welfare of individuals served under HCBS waivers. To that end, I urge you to work with the legislative authorities in your State, as well as other State regulators, consumers and providers to craft programs which will enable consumers to exercise their freedom of choice. As I write this letter, HCFA is in the process of reorganization to focus the activities of the agency on the needs of our beneficiaries. As this transition progresses, we pledge to continue to work with you to continually review rules and regulations to conform to principles on which we agree and which have been enunciated by Secretary Shalala. We rely on your continuing efforts to provide Medicaid services to beneficiaries in the best way possible, and we appreciate these efforts. Sincerely, Sally K. Richardson Director, Center for Medicaid and State Operations DEPARTMENT OF HEALTH & HUMAN SERVICES Health Care Financing Administration Center for Medicaid and State Operations 7500 Security Boulevard Baltimore, MD 21244-1850 Dear State Medicaid Director: In the Americans with Disabilities Act (ADA), Congress provided that "the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living and economic self-sufficiency for such individuals." 42 U.S.C. 12101(a)(8). Title II of the ADA further provides that "no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs or activities of a public entity, or be the subject of discrimination by any such entity." 42 U.S.C. 12132. Department of Justice regulations implementing this provision require that "a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." 28 C.F.R. 35 130(d). We have summarized below three Medicaid cases related to the ADA to make you aware of recent trends involving Medicaid and the ADA. In L.C. & E.W. v. Olmstead, patients in a State psychiatric hospital in Georgia challenged their placement in an institutional setting rather than in a community-based treatment program. The United States Court of Appeals for the Eleventh Circuit held that placement in an institutional setting appeared to violate the ADA because it constituted a segregated setting, and remanded the case for a determination of whether community placement could be made without fundamentally altering the State's programs. The court emphasized that a community placement could be required as a "reasonable accommodation" to the needs of disabled individuals, and that denial of community placements could not be justified simply by the State's fiscal concerns. However, the court recognized that the ADA does not necessarily require a State to serve everyone in the community but that decisions regarding services and where they are to be provided must be made based on whether community-based placement is appropriate for a particular individual in addition to whether such placement would fundamentally alter the program. In Helen L. v. DiDario, a Medicaid nursing home resident who was paralyzed from the waist down sought services from a State-funded attendant care program which would allow her to receive services in her own home where she could reside with her children. The United States Court of Appeals for the Third Circuit held that the State's failure to provide services in the "most integrated setting appropriate" to this individual who was paralyzed from the waist down violated the ADA, and found that provision of attendant care would not fundamentally alter any State program because it was already within the scope of an existing State program. The Supreme Court declined to hear an appeal in this matter, thus, the Court of Appeals decision is final. In Easley v. Snider, a lawsuit, filed by representatives of persons with disabilities deemed to be incapable of controlling their own legal and financial affairs, challenged a requirement that beneficiaries of their state's attendant care program must be mentally alert. The Third Circuit found that, because the essential nature of the program was to foster independence for individuals limited only by physical disabilities, inclusion of individuals incapable of controlling their own legal and financial affairs in the program would constitute a fundamental alteration of do program and was not required by the ADA, and is a final decision. While these decisions are only binding in the affected circuits, the Attorney General has indicated that under the ADA States have an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs. Reasonable step should be taken if the treating professional determines do an individual living in a facility could live in the community with the right mix of support services to enable them to do so. The Department of Justice recently reiterated that ADA's "most integrated setting" standard applies to State, including State Medicaid programs. States were required to do a self-evaluation to ensure that their policies, practices and procedures promote, rather then hinder integration. This self- evaluation should have included consideration of the ADA's integration requirement. To the extent that any State Medicaid program has not fully completed its self-evaluation process, it should do so now, in conjunction with the disability community and its representatives to ensure that policies, practices and procedures meet the requirements of the ADA. We recognize that ADA issues are being clarified through and judicial interpretations on a continual basis. We will provide you with additional guidance concerning ADA compliance as it becomes available. I urge you also, in recognition of the anniversary of the ADA, to strive to its objectives by continuing to develop home and community-based service options for persons with disabilities to live in integrated settings. If you have any questions concerning this letter or require technical assistance, please contact Mary Jean Duckett at (410) 786-3294. Sincerely, Sally K. Richardson, Director Comments from Janet Reno, US Attorney General NCIL Awards Luncheon May 15, 1998 Washington, DC "...We believe that states have an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs. And we have used the law to fight for this. Many individuals with disabilities are being placed in nursing homes or other institutional settings even when they don't really need to be there." "...But some states don't understand what I've been talking about and they refuse to make reasonable modifications in their policies that would allow this to happen. They deny people with disabilities from receiving community based services under already existing state programs. That is why we have argued that the ADA's integration mandate should be applied in these situations. We say reasonable steps should be taken to provide services in the community where that Is the appropriate setting for the Individual. I am happy to report that the only two courts of appeal to address this issue have agreed with our reading of the law."... Janet Reno, -United States Attorney General made the above statement at the National Council On Independent Living's Annual Meeting. Janet Reno's statement is in direct response to ADAPT's efforts to require states to make their programs accessible under the Americans With Disabilities Act (ADA). State Programs like Medicaid would be required to insure that they were delivered in the most integrated setting. Support the work of ADAPT! Become Inciteful! Incitement will now be coming out regularly on a quarterly basis. With all that is going on it is so important that you give all you can. Even though there is no mandatory subscription, it does cost money to keep the information flowing. Your contribution keeps the activist voice of ADAPT speaking out. Yes! I support ADAPT Here is my contribution for Incitement: $10 $15 $25 $35 $50 $75 $100 $500 Other Your contribution is tax deductible. Make checks payable to: Topeka Independent Living Resource Center Send to TILRC /Incitement 501 SW Jackson St Topeka, KS 66603 "Injustice anywhere is a threat to justice everywhere." - Martin Luther King, Jr.