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Startseite / Alben / Washington DC, Spring 1997 Two week action 47
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PHOTO Two policemen from the chest down and from the back, carry Spitfire in a sling position between them. She is wearing green camo with pink writing and all you can read is "disobedience.
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PHOTO A large group of ADAPT protesters face the right side of the group. They are in front of the DOL. Almost everyone has their arms in the air waiving and in the middle Mike Oxford is yelling something across the group, his hands cupped around this mouth.
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PHOTO A large crowd of ADAPT folks are gathered to listen as Joann Donnell holds the bullhorn and Steve Gold speaks into it. Large columns run along the left side of the photo and some people are lost in the gloom at the back.
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PHOTO ADAPT protesters in wheelchairs clogging up the Greyhound driveway. One group is lined up on the side, another is clustered in the middle of the driveway. Tall cinderblock type walls frame the driveway and behind them the backs of a few Greyhound buses are visible.
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ADAPT FREE OUR PEOPLE The Honorable Bill Clinton President of the United States White House Washington, D C. 20000 June 13, 1997 Dear Mr. President: With over 2 million Americans with disabilities locked away in nursing homes and other institutions, ADAPT must take a stand. ADAPT, and many of these millions of Americans have waited through a first term and now well into a second term for the institutional bias in the nation's long term care system to be dealt with. ADAPT knows that you deal with many critical issues, but with millions of lives on the line this issue is no less critical than many you have chosen to address. In the 1992 Presidential Campaign you committed to ADAPT that you would create a Personal Assistance Services Task Force. You also said "... I support efforts to make affordable personal assistance services available to Americans with disabilities." It hasn't happened. In May 1995, because of demands made by ADAPT, Health and Human Services Secretary Donna Shalala affirmed the Administration's support for principles of "...emphasizing home and community based services and offering consumers the maximum amount of choice, control and flexibility in how those services are organized and delivered." Since this endorsement, the Administration has done little to bring these words into reality. In May of 1996 HCFA Administrator Bruce Vladeck sent out a memo to all HCFA Regional Administrators. The subject was "promotion of home and community based services in the most integrated setting." The words were encouraging but the actual policies to allow consumers real long term care choices have not happened. On October 8, 1996 you sent a letter to the disability rights community during the Presidential Campaign. In it you said "We will not rest until all Americans with disabilities in institutions have the choice of living in their homes and communities with community services." It hasn't happened. On November 4, 1996 Alexis Herman signed a letter on White House Stationary committing that you would meet with ADAPT in the first quarter of 1997. It hasn't happened. Alexis Herman and your office have ignored phone calls and ADAPT's letters of February 12, 1997, March 13, 1997 and March 26, 1997 asking for a time frame and agenda for the promised meeting. We are now currently half way through 1997. On Friday afternoon June 13, 1997 at 4:00 p.m. eastern daylight time ADAPT member Mike Oxford received a phone call from Bill White stating that ADAPT should now begin to meet with HCFA representatives and members of the Domestic Policy Council before a September meeting with you. Why has your Administration waited until ADAPT has come to town, almost three months after the meeting was supposed to take place, to bring up preparations that will take months? Given the history of the White House and its dealings with ADAPT, we cannot accept this phone call as a formal, serious invitation. Considering the previous promises detailed above, ADAPT must have a written commitment signed by you stating your commitment to the principles of CASA as well as your commitment to the process and date for our meeting. If we do not receive this written commitment by 5:00 PM eastern daylight time June 16, 1997 ADAPT, sadly, will have to consider Bill White's call another delay tactic by the White House. We are waiting for your written commitment. For An Institution Free America Members of ADAPT
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[This page continues the letter from Image 1057. Full text available under 1057 for easier reading.]
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105th Congress 1st Session H.R. 2020 To amend title XIX of the Social Security Act to provide for coverage of community attendant services under the Medicaid program. In the House of Representatives June 24, 1997 Mr. Gingrich introduced the following bill; which was referred to the Committee on Commerce A Bill To amend title XIX of the Social Security Act to provide for coverage of community attendant services under the medicaid program. 1 Be it enacted by the Senate and House of 2 Representatives of the United States of America in Congress assembled, 3 Section 1. Short Title. 4 This Act may be cited as the "Medicaid Community 5 Attendant Services Act of 1997".
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PHOTO: An angry looking policeman with his hands on his hips looks down at a calm, cool and collected looking Mike Auberger as they discuss the action and what will happen next.
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PHOTO: Looking up with a person forming the ASL letter L with their hand, looking at a second person looking down from a balcony at the Home Care Association. The person above is smiling.
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[Headline] Protesting Home Care Laws [Image] [Image caption] Bryce Thomas, 9, and his mother, Janet, from Texas, protest outside the National Home Care Association. They joined more than 200 disabled demonstrators who gathered yesterday at the association on Capitol Hill. The protesters demanded. laws to give disabled people more control over home health services and keep them out of institutions. They said nursing homes and nurses' associations oppose their cause.
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PHOTO: Long, long, long line of ADAPTers marching single file down Independence Ave. and crossing 7th St. in Washington DC.
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[Headline] The People United Will Never Be Defeated [Subheading] Spring Action in DC If there ever were a textbook example of the pay off from working together, ADAPT's two week action in June would have to be it. Victories included: introduction of the Medicaid Community Attendant Services Act, MiCASA, a date for the meeting with the President and the start of the preliminary meetings with his Cabinet folks, a commitment for the Administration to pay someone, of ADAPT's choosing, to search the Medicaid regulations for barriers to community services and/or support of the institutional bias, a commitment of suuport of the CASA principles and an agreement to work together from both the National Association for Home Care and the American Nurses' Association, as well as. a heads-up to both Greyhound and the US Department of Transportation, DOT, that ADAPT is back. Each of the two weeks had it's own flavor, but neither would have been nearly as successful without the other, and by the end the entire action represented the culmination of 7 years of work by thousands of ADAPT members from across the nation. [Image] [Image caption] ADAPT signed and left the President a letter he couldn't misplace at the White House. Photo: Carolyn Long Heading into DC things were looking a bit bleak. The White House was stalling. House Speaker Gingrich seemed to be waffling on the deal he made, and Congressional Democratic leadership seemed bound to ignore us. In addition, we could not find a hotel to fit our growing numbers, nor could we find a meeting room for under $11,000 an evening. But we couldn't give up, so we forged ahead. We split into waves, the first coming one week, the second the following week. We shared accessible bathrooms by the floor, and we met on the P-2 level of the hotel parking garage. We kicked off the first week with a “special delivery” letter to the White House. During the November ADAPT action in Atlanta, the President had promised, through his then Director of Public Liaison Alexis Herman, to meet with ADAPT before the end of the first quarter of 1997. Here we were at June. Well we had taken off our shoes for some heavy math but there was no way we could make June come out as anything but the end of the second quarter, and still not even a commitment for a meeting date. An eleventh hour call from Clinton’s staff saying “we’ll be setting up something soon” was taken as nothing more than a delay tactic. And ADAPT had had it with delays. So we wrote a letter listing the consistently broken promises from the White House and demanding a response with a definite meeting date by 5:00 pm Monday, the next day. Then all 250 of the first wave of ADAPTers marched over to Bill’s place to deliver the letter. We had made it 3 feet wide by 5 feet tall, to assure it would not get lost in a pile on someone’s desk. Once at the White House we strung out in a line across the front, and each and every ADAPT person signed the letter. For almost an hour, as the tourists and the park police watched our impromptu ceremony. At first the Secret Service, who guard behind the black iron fence, were reluctant to take the letter up to the White House, but when we said we'd then have to stay to make sure it got inside, they figured out a way to deliver it for us. [Subheading] Making a home care visit The next morning we marched over to the Metro for a trip across town. Though the Metro in DC is one of the easiest and most accessible subway/light rail systems in the country, it's elevators are tiny--two at a time at best. So it was slow going but we managed to not lose one person. On the contrary, we picked up a few extra folks. A group of Japanese tourists with disabilities joined us for part of the day. None of us spoke Japanese, so we hoped that the adage "actions speak louder than words" held true here. Not only was our action a tourist attraction, a bus load of supporters from New York City came down to join us for the day! Our target was the National Association for Home Care. We want service dollars redirected from institutions to community, but many home care providers are so entrenched in the same attitudes and assumptions, their agencies' services are often like moving the institution into your home. Where there are Centers for Independence Living and other agencies that practice consumer controlled service delivery there are better choices, but for the vast majority who want an agency provider the only options are home health care agencies. For MiCASA to achieve it's goal these agencies will need to come to a better understanding of what is needed and wanted. (When people use vouchers, fiscal agents, etc. there is obviously consumer control. But not everyone wants or can handle the reporting that comes with these options.) So Monday we flooded their national headquarters calling for their support for CASA and consumer control. As luck would have it, their Board--and their Executive Director--were in Bermuda on a retreat. Of course ADAPT was not going to let a little thing like hundreds of miles of ocean stop us, after all this is the 20th Century. Upstairs the leadership team began negotiations via phone and fax. We had crammed the building, surrounded the front and blocked the back. These headquarters were declared a nursing home, no one in or out without ADAPT approval. It was boiling hot in the sun, but the troops held fast. Around back things got rough a few times, there were a few wheelchair to BMW stand offs, but ADAPT was able to convince these drivers it was in their best interests to go back the way the came. Hard to say if it was the Bermuda triangle, too many Mai Tais, or too many letters after their last names, but it took these folks for ever just to write a letter of commitment. About 2:00 ADAPT served up the usual lunch fare (little burgers, cold fries and blessedly cold drinks). About 2:30 a pizza truck pulls up outside and starts unloading stack after stack of pizzas and case after case of drinks. We're talking hip high stacks; and this pizza was not the cheapo variety ADAPT got the night before There must have been $2,000 worth of lunch. Then these guys in ties and girls in hose came out and started serving the pizza up and down the sidewalk. What was originally intended to be a quickie, "first round of a double header" type action, strung out into a day long affair. In the end however, we got a series of commitments from the Home Care folks who had also been alerted that their customers were not too impressed with many of their members' "best" practices. [Subheading] JOB COACHING THE ADMINISTRATION STAFFERS When we arrived back at the hotel it was well after 6:00 p.m.. A fax from the White House had just arrived. It consisted of a White House cover sheet, and two blank pages. Granted politicians don't like to make commitments, but this seemed a trifle vague, even for this master politician. Puzzled, we called to see if Clinton had intended such a vacant response, but allegedly everyone had gone home for the day. So we had to take it on face value. Tuesday we took the matter of this meeting to the one who made the promise, Alexis Herman herself. Since November Ms Herman had received a promotion, she's now the Secretary of Labor. Her office was right down the street, so we decided to drop in and see what she could do to clear up the problem. She had, after all, said in her November letter to ADAPT she would "be in touch with [ADAPT] directly to discuss the appropriate arrangements for this meeting." We figured she probably wasn't getting her telephone messages, or all her mail, because she had never responded to one of our calls or letters. [Pulled quote] "If you have no vision of your destination, how in the world are you going to get there? .... "Empowerment is when we understand that society is nothing more than what we as individuals think and do every day. We are society. Only when we govern, ourselves is there government." — Remarks by Justin Dart, National Council On Disability Summit, April 27, 1996 [Image] [Image caption] ADAPT flooded the lobby of the Department of Labor as we went in search of Alexis Herman, our chants echoing through the building. Photo: Tom Olin We poured through the security guards' station and flooded the Department of Labor lobby, a big echoing glass and granite job. Workers crowded the balconies and stairways as we chanted "We Want Alexis" and "Our Homes NOT Nursing Homes". Herman was off at a celebration when ADAPT hit the lobby. Negotiations were turned over to her replacement Maria Echaveste. It finally turned out a little job coaching seems to be in order for the White House staff. They refaxed the letter this time with the pages facing the right direction so we were able to see the response. Clinton set September 10th as the meeting date, and with Ms Echaveste now involved, we strengthened the deal by arranging to hold, the first of the preliminary meetings with the Cabinet folks who deal with long term care for while we would still be in town. Having been there and taken care of that we picnicked in front of their offices and headed off for the folks we had missed hitting the day before One of the main problems with doing two hits in one day is that you often attract the police at the first action, and then can't shake them for the second one. But a group's gotta do what a group's gotta do, play the hand dealt. So we headed to Greyhound with police escort in tow. [Image] [Image caption] ADAPT closed US DOT [Subheading] TAKING A BITE OUT OF GREYHOUND Meanwhile a small ADAPT delegation went over to Gingrich's office to check on their progress and answer some questions his staff had. In a conference call before we got to DC, Gingrich had promised to introduce the CASA we wanted by June 21st. We wanted to make sure his people were still on track. Greyhound is an old enemy of ADAPT's, and little love is lost between us. When the Americans with Disabilities Act was written, 1997 was to be the last year transit companies could buy inaccessible over the road coaches Larger companies like Greyhound were to have started last year. Instead Greyhound lobbied and slipped an amendment in a highway bill last year, that extended — for an indefinite period of time — their waiver from buying accessible buses. Now the sleaze balls are replacing their entire fleet of buses, so there will be no access until well into the next century. ADAPT was here to serve notice to Greyhound that we won't let this travesty pass without reaction. As we arrived at the DC terminal, part of the group peeled off to block the exit driveway. The rest went around to block the entrance driveway. The numbers at each were double those that used to come to ADAPT's national actions in the early years, Greyhound tried to ignore us. They started loading and unloading passengers from the sidewalks in front and along side the terminal. After giving a warning, ADAPT blocked these buses too. ADAPT had become a barrier to Greyhound. Part of the leadership team went inside to deliver our demands to the Station Manager, but she just scurried away each time we got near her. Soon and for the rest of the afternoon we held the terminal so Greyhound got a taste of what lack of access means. This action was intended only to be a simple warning to Greyhound. Though most of the folks at this action had not even been members of ADAPT during the bus years, we did not even really have to talk about it, everyone reached the same conclusion. This was only our first lesson for Greyhound ADAPT will teach this dog a new trick. At 6:00 p.m. we pulled off; we had one more day for the first wave of actions. [Subheading] RAISING THEIR BLOOD PRESSURE On this last day we took on a group which, not unlike the home health care folks, purports to be our friend but actually causes many problems in the delivery of attendant services. the nurses. We did the Metro thing again and got off right beside a Department of Transportation building. We made noises and gestures as if this was our target while we waited for all 250 of us to ride those elevators, two at a time, to our gathering point. When we were all up, we turned and crossed the other street to where the American Nurses Association building was most conveniently located. It was casual day for the nurses. They were shocked. Why were we here? They took such good care of us! How could we have a problem with them? Couldn't we protest outside? They had work to do! Their Executive Director was out of the office at a conference in Vancouver. Wait a minute... they're in...Bermuda, ...Vancouver? We're meeting in a parking garage, sharing accessible bathrooms with a hotel floor full of our wheelchair warriors? What's wrong with this picture? The leadership team outlined our demands to the nurses' second in command. She said "OK we'll write a letter confirming our agreement," but when she returned all she had was a 'thank you for your input' type letter. The arrogance was not lost on the ADAPT crowd. Getting a second letter with real commitments took a lengthy wait, but no one was moving till the agreement was finalized. As we left we wanted to stop by Gingrich's office to check on his progress. We headed up Independence Ave. to the Rayburn House Office Building, marched in the U-shaped driveway and sent a delegation inside. Gingrich's staff restated their commitment. A passerby asked one of the police "what is going on?" He turned to her and said "this? Oh this is ADAPT." That evening tornadoes were predicted in the DC area. Corning out of the subway the sky was dark and the clouds swirled above. There was a strong scent of storms in the air and you could feel the charge in the atmosphere At 8:00 we gathered in P2 for our last big meeting and then a party courtesy of SWPA ADAPT. This waive of folks had been almost half brand-new ADAPT members But by the end of this week they were seasoned, ready for anything. Their hard work this week would pave the way for the next. And so, deep below ground we celebrated the power of working together and the joy of standing up for your rights. [Image] [Image caption] ADAPT emerges victorious. Photo: Denver ADAPT [Subheading] WEEK TWO BEGINS Two days later the second waive rolled in. After Sunday's meetings and workshops and updates, this group was ready for bear. Monday was the 21st of June, the date by which Gingrich had promised to introduce CASA. We had not yet received a copy of the "final draft" and we did not want something we had never seen being introduced, but we were not going to let this deadline slide. ADAPT has fought for a national attendant services program for seven years, and since 1994 Gingrich had promised to introduce such a bill. [Subheading] NEWT WATCH IN THE ROTUNDA The leadership team had decided what was needed was perhaps the hardest action of all, at least for ADAPT folks, a vigil, a Newt Watch We ringed the Capitol Rotunda and settled in. Tensions were high as the tourists flowed through the room and we waited and waited. The noon deadline passed and Gingrich's staff said they were working as fast as they could with Legislative Council (the folks who really write all the bills introduced in Congress) We agreed to wait a bit longer, and in the meantime sent out feelers to some of the other Congressional leadership. Our message: we are here, we want CASA, are you with us? Minority Leader Dick Gephardt finally agreed to meet with a few of us the next day and committed his support for the principles of CASA. Meanwhile, New Mexico ADAPT continued their work with Senator Pete Domenici and met with him just outside the Senate floor that afternoon, presenting him with an ADAPT T-Shirt when he said he would consider sponsoring CASA in the Senate. By 5:00 p.m., though we had made progress with other members of Congress, we had all but lost hope for the Speaker. The leadership team decided that we would start chanting and blocking at 6:00 to at least send a message of our commitment to the issue. Capitol Police must have gotten wind of the plan because only a few minutes later Gingrich s staff called and asked a small group of ADAPT folks meet with them and Legislative Council directly so we can iron out any problems so the bill could be introduced late tonight (the House was staying late to work on the budget anyway). We had come so close; to throw it away would be a tragedy, but what if this was just another trick? Then the leadership team came up with a plan. We left the Rotunda, the small group went off to meet with Gingrich's people, and the rest of us marched over to the Rayburn building, where Gingrich's office is located. We took up our Newt Watch again The hours crawled by. There was no word. We just had to have faith, and we did. But we also began planning in case we need to extend this stay. Folks agreed to give up plane tickets and camp out if need be. We were too close to give it up now, everyone was ready to do what needed to be done. After a couple of hours the negotiators sent out Steve Gold and Zan Thornton with an update. We — finally --were sitting down with Legislative Council staff who understood our goals. Together we were rewriting the bill to be much better than it was originally, but it would take awhile. So we continued to wait. Later they told us Gingrich's people kept asking "they're still out there?" Around midnight when our people emerged from the building with a new and better Medicaid Community Attendant Services Act, MiCASA, and a commitment it would be introduced as soon as Gingrich himself had read it. [Image] [Image caption] Sen. Domenici meets with New Mexico ADAPT. Photo: New Mexico ADAPT One day of the Newt Watch had been extremely productive. We had finally been able to sit down together with all the players and we had squeezed out a bill agreeable to all. We could continue the Newt watch until we saw it introduced, but even with two weeks of actions we had limited time and several other things to attend to. The leadership team agreed we had another target to tackle and we would still have Wednesday if the Speaker reneged on his promise. [Subheading] A SCENE ON SEVENTH STREET So Tuesday we headed off through the streets of DC. We had served notice on Greyhound, but there was another villain in this piece. The US Department of Transportation, DOT, is now years late in issuing regulations for Greyhound, and the rest of the over the road coaches. For a few of us hitting their headquarters was a blast from the past, but for most this was completely un-known territory. Yet, despite this minor disadvantage, 250 of us were able to swarm the building and completely shut down it's four entrances. Within less than five minutes the ground level was sealed. Lots of us got inside and took elevators and lobbies. Others outside were handcuffed to block the doors. Our demands were: a meeting with Secretary Rodney Slater, that DOT issue the regs and DOT contract with ADAPT to evaluate Greyhound's services to disabled people the interim. Once again we played the waiting game. Slater was out of town at an official function and messages had to be laboriously relayed back and forth. DOT officials tried to be vague, they tried to be tricky, they tried almost every-thing, but in the end they committed to a meeting within 60 days. With that we pulled off the building, everyone agreeing that if there is any funny business we will be right back in their faces Just as we gathered to share the letter of commitment with the whole group, Mike Auberger's cell phone rang. MICASA was introduced. It was now HR 2020. Talk about timing. This left another hard decision for the leadership team to make. There are several very confrontational targets ADAPT needs to tackle. We could address one then or we'd probably have address it in the future. We had one more day. How could it best be spent? Discussion went round and round and in the end the decision: keep the heat on CASA. We would visit every last member of the House of Representatives' offices, leave them a copy of CASA and talk to their staff about it. [Subheading] ANOTHER KIND OF HOUSE CALL There are three House office buildings, and we had three color teams. Each team took a building, split up and covered each floor. By the end of the day we had distributed 440 copies of CASA. We had talked to 420 aides and a smattering of Representatives. Those who had been forced into nursing homes or ICF-MRs shared their stories. Those among us who provided attendant services shared how easily the concept can be implemented. Gingrich's office was getting lots of calls on this new bill. We had our first co-sponsor. Mi-CASA had been launched. Meanwhile, a small group of representatives from various ADAPT groups had gone to the White House's Old Executive Office Building for the meeting set up during the first week, the first preliminary meeting for the meeting with the President. They were a mix of ex-inmates, providers and policy wonks. When we met up back at the hotel, their report was mixed. The Administration took a very partisan stand on CASA. The Republicans had killed a long term care bill they introduced last year so now they did not want to support a Republican bill. It was inspiring to see such adult thinking and such leadership from the President's people. They wanted to do studies, pilots, etc.; things that have already been done. However, they did commit to paying someone to look through the Medicaid regs to identify barriers to providing community services, and a meeting with the CBO and OMB. Kleinmann summed it up well as she left: "Every three minutes someone in a nursing home dies. While we've been here talking 27 people have died. Let's free our people." Down on P2 that evening another meeting and then dance celebrated the victories of the past two weeks. Needle to the Groove had every-one rocking out, as we slowly took in the hurdles we had just cleared. We still have much work ahead of us. MiCASA was referred to the Health and the Environment Subcommittee of the Commerce Committee. We must push for it to get a hearing or there it will remain until it dies. We need as many co-sponsors as we can find. And we need it to pass the House. There is also the Senate as well. [Image] [Image caption] P2, Our Unique meeting room in Washington Photo. Denver ADAPT If ever there were a text book example of the pay off from working together, this two week action would have to be it By presenting a united front we had clearly shown our opponents we were more of a force than they wanted to reckon with. We had many victories that each of us there played a part in winning. It was on this short march up Independence that the only arrest of the two weeks occurred. We were tired and some of us were lagging so there were large gaps in the end of the line. A woman was blocking a truck from driving into our line. The cops, frustrated from the weeks' events, wanted to regain control. Seeing the opening, they forced the issue, ordering her to move. They had not hassled anyone when we were a steady stream. She was alone in the street and an easy mark. When she would not move they hauled her in. ADAPT had protested in front of the White House, shut down the National Association Home Care, shut down the Department of Labor, the Greyhound terminal and the Nurses Association. We marched through the streets of DC day and night. We linked two groups of people doing different actions to create a two week barrage on the 'business as usual' ignoring of our issues. This incident was the single arrest. Because we stuck together. United, we will never be defeated.
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