INCITEMENT Winter 1998 ADAPT/Incitement 1339 Lamar SQ DR #101 Austin TX, 78704 512-442-0252 V/TDD FAX 512-442-0522 V/TDD Incitement is produced from the offices of Topeka Independent Living Resource Center (TILRC). Articles, letters, compositions, displays and photos are encouraged. Please contact Tessa Goupil for deadlines for submission of materials. The Editor reserves the right to edit or omit any material that is submitted. For more information, contact Tessa Goupil at TILRC or Stephanie Thomas at ADAPT. Topeka Independent Living Resource Center, Inc. 501 SW Jackson St., Suite 100 Topeka, KS 66603-3300 (785) 233-4572 V/TTY (785) 233-1815 TTY (785) 233-1561 FAX ADAPT Harvests Victories for REAL CHOICE by Stephanie Thomas What do you get when you mix hundreds of ADAPT activists, the nation's capitol, an election time, big time lobby groups, a lawsuit, and a bunch of unfulfilled promises? Yikes, look out whatever it is... And that's just what happened when the largest number of ADAPT activists yet rolled into Washington DC on Halloween ready for answers, tired of excuses. Monday morning was the eve of the national election. ADAPT moved to confront both political parties which had given Real Choice, MiCASA and community-based attendant services a lot of lip service but remained comfortable with the fact that over 2 million Americans are locked away in nursing homes and other institutions, cause they don't have any real choice. The plan was simple, hit both parties' headquarters and get the person in charge to negotiate on our demands. Executing it was not quite so simple. Yet with the crackerjack leadership of the day and color leaders, our crew of over 500 people -- most in wheelchairs -- threaded their way through the streets of suburban Virginia; up and down numerous tiny elevators and along the blue, green, yellow and red DC Metro subway lines; over brick covered downtown streets; past power-player watering holes and national monuments and onto the two targets. Because of the nature of this action and our numbers, we split into two groups. Half our people packed the lobby of the National Republican Party Headquarters and flooded out onto the street in front of the building. Half surrounded the National Democratic Headquarters and filled Ivy Street to boot, declaring these buildings nursing homes for the day. The Democrats' and Republicans' brilliant response? Play possum. Both parties wanted us to believe that on the eve of a national election, their leadership had wandered off and could not be tracked down. Our leadership teams were a bit more on the ball than that. We sent in our demands that their leadership meet with us, that they support MiCASA, that they develop a position paper on the institutional bias of our long term care system and making home and community based services the first priority, and that they include Real Choice and attendant services in their national platform. Their first response was to stonewall. However, we were ready for that. ADAPT folks had come from all across the nation, from Idaho and Washington, from Utah and Colorado, from Tennessee and Georgia, from New Hampshire and Connecticut. People had taken off from work, had scraped together savings from paltry SSI checks, they had slipped away from nursing homes, come on oxygen tanks and duck-taped together wheelchairs. ADAPT could not be more serious about Freeing Our People, and no bureaucrat or politico in a huff over a few hours inconvenience was going to sway us. As they say back home, that dog won't hunt. The day wore on and the city cops over at the Republican headquarters grew antsy. One drove his motorcycle into someone's wheelchair. The valiant ADAPT volunteer who had gone for food was chased around the neighborhood dozens of times, given 3 tickets and, at one point, forcefully boarded and threatened. The Republicans had scheduled a press conference which they apparently forgot to cancel. So at the appointed hour the media showed up to find the building surrounded by activists chanting "Our homes, not nursing homes!" and they got the real story! It seems the way to the politicos' heads (never mind their hearts) is through their stomachs because it was the spill over of the action into their supper clubs next door that finally got the negotiations on track. At the Democratic Club patrons and some staff were so eager to wine and dine and pretend nothing was happening, they literally crawled over folks in wheelchairs. But ADAPTers held strong and in the end it paid off. The leadership teams in both places were able to negotiate meetings with the leadership of both parties at which our representatives will continue to push the issues, until justice is done. "I have been authorized to commit to a meeting with the ADAPT leadership and Chairman Nicholson" the Republican letter read, and in addition to agreeing to discuss the issues, position papers and addressing the full convention it committed that "ADAPT will... address the Platform Committee of the Republican National Convention." In the Democrats' letter they also agreed to meet to discuss the issues, position papers and addressing their convention and in addition stated "the DNC will work to develop, promote and pass legislation in the 106th Congress that will allow people with disabilities... to choose and control where and how long- term services and supports are delivered." Day two found ADAPT converging on the Department of Health and Human Services, home of Health Care Finance Administration, HCFA, (which runs Medicaid) and HHS Secretary Donna Shalala. In single file we marched to the building which covers its own city block, and surrounded the place till all the entrances and exits were blocked. This was a place where many promises are made but few kept. Those inside speak out of both sides of their faces, as we have seen on so many occasions, not the least of which being the MiCASA hearing last spring. As recently as the week before, HCFA administrator Sally Richardson had been back peddling on her letter to the states(printed in the last issue of Incitement) telling a gathering of the State Medicaid Directors that doing a waiver would count as their effort toward providing services in the most integrated setting. ADAPT was here to say: "Stop selling short our civil right to integration." This time the General Services police were called in to "keep the peace." But they were not very well trained it seemed, as there were scuffles at every door they tried to keep open. Though folks trickled in and out here and there, there could be no doubt those inside were well aware of our presence, and working hard at pretending they did not care. As the close of business day drew nearer their level of caring grew, as they became increasingly aware that it was not just the doors that were blocked, the parking garage was too. Tussles took place at various doors at different times as the guards tried to return things to business as usual. But ADAPT made sure business as usual was not going to happen till HHS stopped their double talk. Folks were dragged from their chairs but others just filled in when gaps appeared, so that eventually the police had to go inside and find someone in authority who could negotiate with us. This person turned out to be Assistant Secretary of Management and Budget John Callahan who tried to have us just gather up on a corner to wait while he "wrote a letter which would take about an hour..." but the leadership team corrected the misconception that we would leave the building without a written commitment to a meeting with the Secretary herself. Once he got that straight it was remarkable how quickly Callahan was able to take our leadership upstairs, negotiate an agreement, put it in writing and come back downstairs and read it to the crowd waiting below: "The Secretary of HHS and top administrative officials agree to meet with ... ADAPT ... to develop a transition plan that will result in each and every state complying with the most integrated setting requirements of the ADA. The meeting agenda will include the Secretary's assurance that she will work with ADAPT so that the FY 2000 Budget includes sufficient funds to carry out the aforementioned objective." We had spent two days hammering on our main issue, attendant services and real choice. The last day we had one other item of business to deal with: lifts on buses. The Department of Transportation had published strong regulations, but the bus operators could not leave well enough alone. The lobby group for over the road buses, the American Bus Association (ABA) acting as Greyhound's lackey, had filed suit in federal court roughly one week after the regulations were out. Their goal: stop the mandate for lifts on all new buses. This kind of action is what had birthed ADAPT in the first place, when APTA (American Public Transit Assoc.) had filed and won a suit against lifts on city buses. There was no way we could let this slide. The ABA building is an old Greyhound terminal for the capital city. Marble pillars and floors with inlaid Greyhound tile, paintings of buses across America, and even a small museum type display of the history of Greyhound and the building decorated the art deco space. The terminal had been moved, but ties clearly remained strong. A team of ADAPT negotiators plus about 30 back up people went up the ABA offices, the rest of us remained below to keep the heat on. Once again those in charge tried the old "ignore it and maybe it will go away" with a predictable lack of success. There were those inside the ABA offices who saw the light, but their leadership refused to budge on the key issue of the lawsuit. All that marble and a 12 story atrium made for a great echo chamber and from the time ADAPT entered the building to the end of the action we chanted our message to echo through the brains of those in the plush offices above. As the day wore on new chants were born like "ADAPT fought the battle of ABA, ABA, ADAPT fought the battle of ABA, and the walls came tumbling down" (to the tune of Jerico) and oldies but goodies like "We Will Ride" were pulled back into service. Around 4:00 the word came down that the ABA folks had once again refused to budge. The anger mounted. The folks here were the ones who had been waiting for Greyhound to comply with the ADA, had tried the test rides, had been manhandled when boarding, had been refused rides, and more. We were not going to stand idly by while they snatched justice from our hands. On signal everyone headed for the elevators and blocked their access, just as ABA was blocking ours. The police came marching in pulling on their latex, no-cootie arrest gloves. ADAPT held firm. Then the police pulled the emergency alarm, and evacuated the building. Knowing we were the emergency, we declined to leave, and lo and behold the ABA finally agreed to negotiate, committing in a letter that the ABA President and CEO along with their Chairman of the Board of Directors would meet with ADAPT by mid-December to discuss their pending legislation and the DOT regs. Three splendid days of actions, and victories from each. That night we celebrated a job well done, and looked to the spring when we will again be joining forces in DC... to set our people free! Supreme Court Threat to ADA and Integration of People with Diabilities ACTION NEEDED!! ADAPT's Campaign for Real Choice received a potentially major threat in early December when the Supreme Court decided to hear the Olmstead vs. L.C. & E.W. case sometime this spring. If the Supreme Court overturns the lower courts which have ruled in support of integrated services, people with disabilities will loose a big chunk of their legal right (though not their moral right) to be integrated into their communities. Olmstead is one of the three cases referred to in the Sally Richardson letter printed in the last issue of Incitement, and is similar to the Helen L. case. For those not familiar with the details, this case is about L.C. and E.W., two people with mental disabilities from Georgia who had to live in a state hospital in order to receive the support services they need. Similar to Helen L., these two sued the state under the ADA Title II, saying that this arrangement violated their right to services in the most integrated setting, and they won. When the Helen L. case was appealed to the Supreme Court they declined to hear it, implying they agreed with the lower courts. So why did they decide to hear this one? The fact that 22 other Governors signed on to a brief filed in asking them to hear the case and overturn the lower courts decisions might have had something to do with it. In their brief these Governors asked the court to find that 1) the ADA does not apply to services like long term care, 2) the ADA is unconstitutional because of the states' rights which are protected in the constitution, (The Court decided not to take up the second issue at this time, but they may in the future.) 'The Governors of the following states signed on: GA (original appealer) and AL, CA, CO, DE, FL , HI, LA, MD, MI, MS, MT, NE, NV, NH, PA, SC, SD, TN, TX, UT, WV, WY. Will Olmstead be our Brown vs. Board of Education, where school integration was determined to be the right of all children and the law of the land? Or, will Olmstead be our Dred Scott, in which the Supreme Court ruled a slave could not sue for his freedom? Time will tell. But in the meantime we should NOT be sitting on our hands waiting to see our fate, and the fate of our brothers and sisters. We know that morally we are right and we need to make sure everyone is aware what is going down this spring, and that the disability community is NOT going to take this lying down. We need to hold accountable the Governors of the 22 states which signed on, and make sure the other 28 Governors do not sign on as well. 1) On Friday, January 15, 1999 visit, call, fax or e-mail your Governor with the following message: Don't Mess with Our Rights! Don't Mess with the ADA! Support "Most Integrated Setting"! 2) Join with other disability, aging, family and advocacy groups to organize 6 month statewide strategies (January '99 - June '99) to assure that people with disabilities have the RIGHT to live and receive services in the community! Let's not let the end of this Century mark the end of our legal right to integration and independence. FREE OUR PEOPLE! ADAPT meets with Senator by Erik T. von Schmetterling, MD On Tuesday, November 3rd, while most of our troops were so diligently presenting ADAPT's position on REAL CHOICES to the Department of Health and Human Services (HHS), a small contingent of ADAPTers reluctantly broke away to attend a meeting with US Senator Rockefeller, from West Virginia. National ADAPT was represented by Cassie James, Jimmi Shrode and Erik von Schmetterling all of Philadelphia, and Zen Thorton from Atlanta, GA. Local representatives of West Virginia ADAPT were also there, including Chris Sunser. This meeting was arranged by the local ADAPT chapter, with help from Cassie James. Upon our arrival, the Senator's staff listened to our telling about MiCASA and they sounded quite interested. Finally, around 3:30 p.m., the Senator himself appeared. Originally promising us about twenty minutes of his busy time, he ended up giving us an hour and a half. During which he seemed fascinated by MiCASA and its principles. Senator Rockefeller fell a bit shy of actually promising to sponsor a Senate version of MiCASA; however, he is definitely a strong hopeful when it comes time to offer it in that House. The meeting ended up on a productive note, with the local West Virginians promising to follow through on more work with the Senator. Republican National Committee Thomas J. Josefiak Counsel November 2,1998 To the Leadership of ADAPT: I have been authorized to state that the leadership of ADAPT will be given the opportunity to address the Platform Committee of the Republican National Convention in the year 2000. I have also been authorized to commit to a meeting with the ADAPT leadership and Chairman Nicholson on Thursday, December 3, 1998. At that meeting you may address any other convention related questions that you may have. Included in the meeting agenda will be a discussion addressing the full convention and the position paper we have discussed. Please contact me at (202) 863-8638 to set up a time to meet with Chairman Nicholson. Sincerely, Tom Josefiak Dwight D. Eisenhower Republican Center * 310 First Street Southeast * Washington, D.C. 20003 * (202) 863-8638 * FAX: (202) 863-8654 * http://www.rnc.org * TDD: (202) 863-8728 DEPARTMENT OF HEALTH & HUMAN SERVICES Office of the Secretary Washington, D.C. 20201 To ADAPT: The Secretary of HHS and top Administrative officials agree to meet with 15 Adapt representatives by January 3, 1999 to develop a transition plan that will result in each and every state complying with the most integrated setting requirements of the ADA The meeting agenda will include the Secretary 's assurance that she will work with ADAPT so that the FY 2000 Budget includes sufficient funds to carry out the aforementioned objective. Sincerely, John J. Callahan Assistant Secretary of Management and Budget Democratic National Committee Steve Grossman, National Chair * Governor Roy Romer, General Chair November 2, 1998 Representatives of the DNC, including the Executive Director, will meet with representatives from ADAPT. This meeting will take place at a mutually agreeable time - but no later than November 30, 1998. The meeting will include but is not necessarily limited to: Development of a position paper that recognizes the current institution bias in the long-term care system and that home and community services must be the first priority in long-term care funding. The DNC supports service in the most integrated setting. The DNC will work to develop, promote and pass legislation in the 106th Congress that will allow people with disabilities, regardless of age, or diagnosis (and family members as appropriate) to choose and control where and how long-term services and supports are delivered. This legislation must include financial incentives and sufficient funding so that no eligible individual shall be denied their choice of home and community services. The meeting agenda will also include ADAPT's inclusion in addressing the Convention and ADAPT's inclusion on Platform deliberations. Sincerely, Janet V. Green Executive Director AMERICAN BUS ASSOCIATION November 4, 1998 To: Ms. Linda Anthony on behalf of representatives of ADAPT From: Michele Janis, Vice President, Communications, Marketing and Membership (202) 842-1645 Peter J. Pantuso, ABA's president and CEO is available to meet with up to six representatives of your organization on or before December 15, 1998. Mr. Pantuso will be joined at this meeting by ABA's Chairman of the Board of Directors. The agenda for the meeting will include issues surrounding the Department of Transportation's rulemaking on accessibility to Over-the-Road Buses to persons with disabilities, including ABA's pending litigation. We will be in touch in the next few days to arrange the exact time and location of this meeting. 1100 New York Avenue, N.W. l Suite 1050 l Washington, D.C. 20005-3934 (202) 842-1645 l (800) 283-2877 l Fax: (202) 842-0850 l E-mail: abainfo@buses.org l Web Site. www.buses.org Key Points in DOT's Final Rule Regarding Over-the-Road Bus Accessibility • This rule becomes effective in October 1998. It will begin applying to large entities in October 2000 and to small entities in October 2001. • Beginning October 2000, buses purchased by large fixed-route providers must be accessible. Small fixed-route providers must comply with the same requirement beginning October 2001. • Large fixed-route operators must ensure that 50% of the buses used for fixed-route service are accessible by October 2006. They must ensure that 100% of the buses in these fleets are accessible by October 2012. • Beginning October 2001 for large entities, and October 2002 for small entities, demand-responsive operators must provide an accessible bus to any passenger who requests it 48 hours in advance. • Fleet accessibility requirement for small fixed-route operators has been eliminated. There will be no retrofit or accessible used bus acquisition requirement. Small operators' fleets will become accessible when, and to the extent, that they replace existing inaccessible buses with new accessible buses. Operators must continue to provide interim service until and unless their fleets are 100% accessible, which for some operators (e.g., operators who purchase primarily inaccessible used buses), could be indefinitely. • The Department has added a time extension provision for large fixed-route operators, if: 1. such an operator has not obtained enough new buses in 6 or 12 years to meet the 50 and 100 percent fleet accessibility requirements; 2. it has not put itself in this position by, for example, stocking up on an unusually large number of inaccessible buses between October 1998 and October 2000; and 3. it has otherwise complied effectively with the requirements of the rule, the Secretary could grant a time extension beyond the 6 and 12 year dates. • Because of the advance-reservation nature of charter/tour service, the Department has decided to eliminate the proposed 10% fleet accessibility requirement. The final rule does not require charter/tour operators to acquire any particular number of accessible buses within any particular time frame. These companies will be responsible for providing 48 hour advance reservation service to passengers with disabilities in October 2001 or 2002, as applicable, rather than two years later as proposed in the NPRM. • While working on its regulatory assessment, the Department conducted an informal survey of small bus operators. The Department estimates that for about 5/8 of the carriers offering fixed-route service, not more than 25% of their fleets is allocated to fixed-route service. Operators in this category indicated that an average of 77% of their fleets were assigned to charter service. The Department's concern was that the costs of acquiring accessible new buses for (often part-time) use in fixed-route service would provide an incentive to limit or end fixed-route service. In order to avoid this effect, the Department modified the requirements for operators (defined as a small operator 25% or fewer of whose buses are used in fixed-route service) by giving operators in this category the option of providing all its service, fixed- route as well as demand responsive, on a 48 hour advance notice basis. • When there is a failure to provide required service, the operator must pay a predetermined amount of compensation tothe passenger. The amount of compensation is set by an increasing, graduated scale. The first time a given operator fails to provide required service, it pays the passenger $300. By the fifth such occurrence for any company, the amount becomes $700. The rule states that paying compensation is not a defense in litigation brought to enforce compliance with the rule (e.g., a "pattern or practice" lawsuit filed by DOJ under Title III of the ADA). • Whenever any OTRB makes an intermediate or rest stop, at which passengers have the opportunity to get off the bus and use the facilities that are available, passengers with disabilities must have the opportunity to use the rest stop facilities. The Bus Company is responsible for providing whatever equipment and personnel are needed to complete these tasks and taking the time necessary to do so. When a bus is making a lengthy express run (i.e., three hours or more without a stop) and is equipped with an inaccessible restroom, ambulatory passengers can go to the bathroom but many passengers with disabilities cannot. In this situation, if such a passenger with a disability makes a request for an unscheduled rest stop, the bus operator must make a good faith effort to accommodate the request. Due to potential disruption of schedules and connections, the final rule does not require the bus company to make the unscheduled rest stop. The decision is discretionary with the bus company. • When the bus company owns, leases, controls, or has a contractual relationship with a facility for rest stop purposes, the provision of the rest stop facility is part of a service that a ticket buyer purchases. In these situations, the bus company has an obligation to ensure that the facilities meet ADA requirements. • The conclusion the Department draws from its review of the economic issues in the rulemaking is that, while there are identifiable economic impacts on the bus industry, these impacts are not so great as to preclude the Department reasonably from requiring the accessibility requirements of the final rule. The economic impacts of the rule are not sufficient to constitute an "undue burden" on bus companies. Sculpture to be added to Roosevelt Memorial WASHINGTON (AP) - Bowing to the demands of activists for the disabled, the National Park Service will add a sculpture of Franklin D. Roosevelt in a wheelchair at the entrance to his popular memorial. Roosevelt's paralysis from polio was often concealed from the public when he was president, and the memorial's lack of emphasis on his disability drew protests when it opened in May 1997. Activists called the decision historically accurate and a powerful inspiration for the disabled. "We're very pleased. We're anxious to get it there," Jim Dickson, director of community affairs of the National Organization on Disability, which led the campaign for the sculpture, said Wednesday. "We need this statue to tell all the children with disabilities and all their parents that anything is possible." Around the Nation ADAPT Chapters Demand Most Integrated Setting The Americans with Disabilities Act (ADA) states that programs must be provided in the "most integrated setting" and must offer the "least restrictive alternative" in service delivery. This law was tested in Pennsylvania's Medicaid nursing home program, when in 1995 the Supreme Court let stand the 3rd Circuit Court's decision on the case of Helen L. She was woman forced to live in a Pennsylvania nursing home under the Medicaid program, because no other choices were offered to her. The Court decided in her favor. She now lives free, in her own home, with appropriate needed services. A component of the "Self Evaluation" is supposed to address how the States' policies, practices and procedures promote rather than hinder full integration in the community. According to a letter by Sally Richardson, HCFA Director, to State Medicaid Directors in all fifty states, the self evaluation should have included consideration of the ADA's integration requirement. "The State has an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs. Reasonable steps should be taken if the treating professional determines that 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 the ADA's most integrated setting standard applies to States, including State Medicaid Programs". In August, ADAPT of PA sent a letter to Secretary Feather Houstoun to request the ADA Self-evaluation Plan, as it relates to most-integrated setting. The Secretary did not respond, so ADAPT of PA is visiting her office to demand this information. Similar actions are being staged in state capitols across the nation by ADAPT activists in other states. Dayton, Ohio ADAPT presented Governor Voinovich with Ohio's "10 Worst States Award," recognizing Ohio as the 9th worst state in the nation for creating options for community based personal assistance services. Then an ADAPT member was able to stop Voinovich on his way out a back door. After they all got over to him, they voiced their concerns about Ohio's failure to comply with the ADA's "most integrated setting" mandate, and the roadblocks they'll encounter with Ohio's version of MiCASA, the Ohio Personal Assistance Services Act (OPASA). In response, Voinovich promised to help people with their personal situations and said that people should have community based options, but also said that he was limited in what he could do because of the conflicting directives that come down from the federal Health Care Financing Administration, which sets the rules for community based programs. He said he would speak to members of the legislature about the concerns, and asked them to write his office with ideas about what he can do. Virginia In a letter to Commissioner Dennis Smith, ADAPT Virginia initiated the first of a three step process designed to bring the Virginia Department of Medical Assistance Services into full compliance with Title II of the American's with Disabilities Act. This latest push for services in the least restrictive environment comes on the heels of Virginia's escalating problems caused by significant over use of the state's many institutions. The US Department of Justice has been focusing on Virginia's overuse of state owned institutions. Advocates have pointed out that Virginia's extreme bias for the over-use of institutions to warehouse its disabled population does not stop at the use of state operated institutions. Virginia has long used nursing homes to house young otherwise capable physically disabled people who simply need attendant care to live a less restrictive life. Columbus, Ohio After taking over Director Tompkins' office on the 32nd floor of the State Office Building and about 30 minutes of chanting, ADAPT was greeted by Trish Martin, Office of Medicaid, Thomas F. Gilbride, Deputy Legal Counsel, and Tim Ferguson Director of Community services (waiver guy). ADAPT asked them directly "Do you have a self-evaluation Plan?" Response: "We can't answer that." After about an hour they finally admitted that they did not have one. ADAPT left is disgust, distributed press packets to the Capital Press Room on the way out. They also mailed a complaint to John Woodatch. Memphis Nine people representing Memphis ADAPT were arrested while demonstrating at the state health commissioner's office to demand a broader range of services for the elderly and disabled. They vowed to continue protesting inside state Health Commissioner Nancy Menke's office until she agreed to meet their demands. But the protesters were escorted out of the building by state troopers and Capitol police while Menke was in a meeting downstairs with the Long-Term Care Services Advisory Council. The ADA is supposed to provide disabled people with choices on where their services are delivered, said Dawn Russell, organizer for ADAPT in Memphis. The state has a couple of pilot "waiver" projects for home and community- based long-term care, but those are serving only "a handful" of people, she said. Alexia Levison, deputy press secretary for Gov. Don Sundquist, said police were called in partly because ADAPT damaged property during a similar protest in Memphis, when the group took over offices and spent the night inside the building. "We've had experience with this group before," Levison said. "And that's why they were asked to leave... Commissioner Menke said that she would be happy to meet with any group, but she was in a meeting and also usually when people meet they make appointments."