Blog

[youtube https://www.youtube.com/watch?v=_Qoz2twroN8&w=720&h=405]

I was one of the thoroughly drenched activists blocking the street in front of the Office of Management Budget who didn’t realize how big our success was at that action. Five years later, when everyone was saying the things ADAPT was yelling in the street that day it was clear how essential our voices are.

It seems in retrospect to be a coincidence, or some mystical ADAPT mojo when we end up at the right place at the right time. The truth is that ADAPT is an action group and makes the opportunities, but on May 13, 2002 when Mitchell Daniels had refused to meet with ADAPT and it began to rain, it was beginning to look like an awful mess.

We had blocked the front door to the large office building, which was hassle for some, but most of the people inside saw our takeover as a passing inconvenience. ADAPT had also blocked the two main intersections outside the OMB which was a major irritation to motorists, and to the Capitol Police who were redirecting traffic and preparing to arrest hundreds of us.

The police held off making arrests. The afternoon rain shower obviously caused the authorities to feel that the rain would help cool things off. The rain shower, however, had the opposite effect. ADAPT activists all pulled out an assortment of brightly colored rain ponchos and were reinvigorated by the spring drizzle.

The intersections were wrapped in yellow caution-tape similar to what police use to designate a “crime scene.” The ADAPT yellow tape however said “community first” and had the ADAPT logo. At the four corners of each intersection, activists stretched the tape around the sign poles. Then, they made a May Pole effect by bringing the tape to the center of the intersection. The police didn’t seem to like our appropriating their yellow symbol; they pulled much of it down from the intersection, but many ADAPT activists were partially wrapped in tape into the wet afternoon.

The festive atmosphere outside resulted in the pressure rising inside the OMB. The staff inside who were mildly curious hours ago, were now intently curious if they would be able to get out to go home. Mitchell Daniels sent an assistant out to negotiate with ADAPT.

By that strange ADAPT twist of fate it was Mark McClellan who came out to parley with ADAPT in the rain. We had no way of knowing at the time at Mark McClellan would become the Administrator for the Centers for Medicare and Medicaid Services, the central federal agency developing long-term Medicaid Policy. And it is no surprise that the exact words ADAPT was yelling in the street, would become the language of law in the “Money Follows the Person” Legislation.

In the street that day, I also remember seeing Joe Shapiro the author of “No Pity: People with Disabilities Forging a New Civil Rights Movement.” He was walking around with a microphone interviewing activists, police and bureaucrats. I didn’t get a chance to talk to him that day, but I recall wondering just what his angle was; I wondered what perspective he would give to the demonstration.

About four years later I would learn what Joe Shapiro’s slant was on the ADAPT protest. After “Money Follows the Person” became law in February of 2006, Reporting for National Public Radio, Joe Shapiro told the story of how the legislation came about and is currently helping to get literally thousands of people out of institutions. You can still listen to his piece on NPR.org and hear some of the voices and chants he recorded.

“McClellan recently announced his resignation,” Joseph Shapiro reports in his NPR article: Disabled Activists Win Battle for Independent Care. “Though he’ll be most remembered for setting up the new Medicare drug benefit, he says one of his proudest accomplishments was his work with ADAPT.”

I love being a part of that accomplishment. ADAPT also visited the White House, Congress and we attempted to get support from Unions that week in May. Some people might think that the route to get “Money Follows the Person” sounds more like “luck” than achievement. Well I can’t deny that ADAPT has some bizarre indescribable luck, but the critical factor that made the difference that day, and the following years getting the legislation passed was that ADAPT took action. Without direct action, “Money Follows the Person” might still be just an idea lost in the noise of Medicaid policy.

[youtube https://www.youtube.com/watch?v=uzXakljMnQE&w=720&h=405]

THE VIRTUAL ACTION NEW ORLEANS OCT. 2002

The hotel was booked. It was the Radisson Hotel behind the Super Dome. It was a funky old hotel on Canal St. The elevators had a mind of their own and would take you where they wanted to go! The airline tickets were bought. The t-shirts, the banner, the Mardi Gras beads, and the doubloons (wooden nickels) and the umbrellas for a New Orleans style funeral march were all bought and ready to go. The trailer was packed.

It was the week before and Bob and Stephanie were in New Orleans. They had scoped out the possible targets. They were Senator’s offices, the Federal Building, and the Convention Center where the American Health Care Association was holding their convention was four to six blocks away. That was the huge center that we saw on the news for the people from Katrina. Bob and Steph were concerned about how close we would be to the French Quarter. The Protection and Advocacy and AARP were ready to help us. They had already begun filing an Olmstead suit.

The press was primed. The first article was in the newspaper. ADAPT to Confront Health Care Lobby in New Orleans, “Our Homes Not Nursing Homes” –

What do you do if you are the “little guy,” a disabled or older American, getting trampled by corporate greed and possible fiscal mismanagement? If your name is ADAPT, you fight back!

ADAPT, the national grassroots, disability rights group, will be in New Orleans, October 5 – 10, to confront the American Health Care Association (AHCA) the nursing home lobby, on its continued opposition to “Community First” for Americans with disabilities, young and old.

“Community First” is the rallying cry of 50 million Americans, old and young, who don’t want to be forced into nursing homes and other institutions when they could receive the same long term care services and supports in their own homes, in their own communities …

“Once again, AHCA is asking Congress to throw money at a problem that begs a far different solution. Did the nursing home industry make a bunch of bad investments with our tax dollars?” Asks Stephanie Thomas, a National Organizer for ADAPT. “Did owners pocket too much as profit? Are they now asking Congress for a corporate bailout? We’d sure like to know why Congress would even think about rewarding possible nursing home industry mismanagement by throwing good money after bad. This is corporate welfare at work.”

While in New Orleans, in addition to holding AHCA accountable for its opposition to “Community First”, ADAPT will be promoting MiCASSA, bi-partisan legislation now in Congress (S.1298 and HR3612), which reforms federal Medicaid policy to allow all Americans in need of long term care services to choose to receive those services in their own homes. ADAPT will challenge AHCA to support MiCASSA and give people with disabilities, older Americans and families a real choice in long term services and supports.

There had already been one hurricane that had come. Now the weather forecast was predicting a worse one for New Orleans. The hotel elevator cables are in the basement. If it flooded the elevators would be the first to go. In fact that could be why they had a mind of their own already! The heads of the hotel met with Bob and Steph. They said that their own families were leaving town. They did not think it was safe for ADAPT to come. They assured Bob and Steph that none of us would lose any money. We had a national emergency conference call. It was decided to cancel the action for the first time in our history.

Bob and Steph packed up immediately and began to drive out of town. All of the roads coming into town were closed. Everyone was being routed out. All of the exits were closed. It was just a good thing that they had enough gas. They drove about 100 miles with seeing nothing but fields of water, but finally made it back to Austin safe and sound.

[youtube https://www.youtube.com/watch?v=e1zNeoR3I2M&w=720&h=405]

When I got to Washington DC I was not sure what was going to happen. Just a year before my first ADAPT action in May of 2003; I was living in a nursing home in Boulder Colorado. For the seven years before that I was a Medicaid Skilled Nursing Facility bed.

I spoke out and I spoke up in the nursing home, but it was very different than what I was experiencing with ADAPT. I questioned authority in the nursing home, for myself and for others. What I often heard in response was that the decisions they made were the best for patients and for me. They said they cared about me.

I was not content, but after several years I just didn’t know what else there was for me. I got perks because of my dissent; I often got what I wanted because the Nursing Home staff did not want to hear me complain. I look back and see that giving-in and giving me perks sometimes was their way of manipulating me, the nursing home wanted to shut me up.

One of the perks I got was to have a computer. Ultimately, it was the information on the Internet that got me out of the nursing home. I mean, there is no lock on the front door but I didn’t know I could leave. The attitude that all the nursing home staff related to everyone, regardless of age, was that “you can’t live on your own.” After a while, you just accept that as fact. They say they care about you; and you accept that as fact too.

I was not sure what was going to happen when I got to the capitol for my first ADAPT Action. I was nervous. I mostly did not want to screw-up, so I went to bed early that night.

I use a wheelchair. When I went to the first ADAPT big meeting there were literally hundreds of other wheelchair users in the same room and hundreds of other people with a variety of disabilities. I talked and mingled. I met some people, some new to ADAPT, some old-timers. I got fired-up by MiCASSA and ADAPT’s dedication to get the bill passed. I knew from experience that the campaign for MiCASSA was essential.

No one said they cared about me. As a matter of fact, people didn’t seem to care about me. They didn’t ask if I was hot or cold, if I had enough to eat or got enough sleep. ADAPT gave me way too much information, but they didn’t tell me where we were going. They assigned me to one of several color groups, so I got into line and followed the person in front of me. The color leaders reminded me to keep it tight (stay close to the person in front), stay to the right and single file.

You might think that in that mass of people I would feel unimportant and overlooked. On the contrary, finally I was with people that did care about me. They didn’t say it, like the staff at the nursing home, but it was more evident and real than ever. ADAPT cared about what I cared about. The people around me knew what I knew about life in an institution and they were speaking out.

ADAPT was marching to the White House that day to demand “NO MORE STOLEN LIVES.” They were speaking up for over a million Americans in institutions and nursing homes. They were speaking out for people, like they had spoken out for me before I had even heard of ADAPT.

We were demanding “No more Stolen Lives!” I was determined to speak up until all of us have real choices.

A hundred activists got arrested at the White House that day. The next day I broke the law blocking Constitution Avenue for seven hours in front of the Department of Justice. We made a powerful statement demanding that USDOJ respect and enforce our rights.

On Tuesday we made our point to the American Nursing Association, asking them to support MiCASSA. The final day I visited Congress to get support from lawmakers.

I was hooked on ADAPT.

[youtube https://www.youtube.com/watch?v=Apz6zk60CqM&w=720&h=405]

It had to be one of the coldest Actions we had ever done in History, since outside of the Department of Public Transportation Demo in the late 80’s. We had arrived in Late March, declaring that there would be: “No More Stolen Lives!”

I remember this Action being significant on a personal level; since it was Erik’s first ADAPT Action after his strokes he had sustained during the March to Washington, the previous September.

On Monday, March 22nd, ADAPT had to be downstairs and ready to move at 6AM Sharp! It was a frigid early morning, with bitter wind chills in the single digits, but we were there in front of the Health and Human Services building, bundled up, and blocking the doors, lying on pieces of foam and sleeping bags making sure that the bureaucrats would find themselves not able to get into work, instead of getting out of the building! It was amusing, looking at the faces of the befuddled workers to find us all out there blocking their way! Just when they thought they had figured us out, we had surprised them.

It had been four years since Bush had signed the New Freedom Initiative, which would mandate the Olmstead Initiative be followed. Of course, instead of Freeing Our People, the President had slashed the Medicaid Budgets to the worst lows of all time and had sat on his promise, making war on Iraq and tax cuts for the wealthy his priority.

By 12 Noon, Denis Smith, then Acting Head of the Center for Medicaid Services, for Secretary Tommy Thomson, had agreed to meet with us within 30 days of the action. We ended up meeting with Mark McClellan and it resulted in the “Dear Medicaid Director Letter,” which encouraged states to live up to implementing Olmstead.

We headed right back to the hotel feeling like we had put in two days worth of actions. Thankfully, we got to defrost in the comfort of our hotel. The overall consensus was that we were glad to do it and that we were, of course, much stronger than people gave us credit for! We knew that we had to endure many hardships for our sisters and brothers who didn’t have the luxury of being outside, being free, being able to have the chance to speak for themselves!

The next day, we decided we would hold a People’s meeting in the Dirksen Senate Building, since the Senate had been disappointing us by stonewalling on holding MiCASSA Hearings. Imaging the spirit of Thomas Jefferson being alive within us, we arrived at the Dirksen Building with DVD’s from our March we held in September. On our 144 Mile Trek from Philadelphia to Washington DC, we faced many obstacles along the way, including Motorcycle cops trying to break off our line and then, there was a “bomb scare” reportedly in the building, which caused us a long slow entrance process as they searched each of us very carefully.

One had to wonder if this wasn’t some tactic pulled by the Bush Administration who seems to always play the “terror” card when it comes to limiting the freedoms of the American People.

It seemed to me the “real” terrorists were the Nursing Home Administrators who made money from the suffering of our People!

We were calling on Senator Charles Grassley, who was the head of the Senate Finance Committee to hold the hearings. We chanted, sang songs and held our own hearings on the Stolen Lives of our People being forced to languish and die in Nursing Homes due to the political inaction of our government. It was moving to hear the stories of the People who had been in Nursing Homes and were now free. There were some that we all knew that weren’t that fortunate.

As negotiations broke down with Grassley’s Staff, they began arresting People. “We’d rather go to jail than die in a nursing home.” Erik had decided to get arrested. They had arrested over 150 People.

The Action ended with us visiting Senators and House members to try to get MiCASSA passed.

We knew that when we returned home, we had some real work to do, meeting with State Medicaid Directors and getting them to FREE OUR PEOPLE!

[youtube https://www.youtube.com/watch?v=ryjjTMAzYqY&w=720&h=405]

Twenty-two of DRAC’s members (an all-time high) traveled to Seattle to take on the National Governor’s Association. Joining with our brothers and sisters from ADAPT, we came with just one demand – sign a resolution urging Congress to pass MiCASSA and Money Follows the Person legislation. Day one we got pumped up at a training offered by none other than Shell Trap—the guru of organizing, then at a massive rally at Pike’s Market.

Day two it was off to the hotel where the Governor’s were meeting. In our usual fashion we blocked off traffic and generally gummed up the works. The police were out in force, and while everything was cordial, it was clear that they didn’t quite know what to expect from us and were prepared for anything, as evidenced by the gas masks hanging from their belts. However, they attempted to be nice—they gave out free bottled water. Still, after several hours things were getting a little tense and there was talk of possible arrests. Then, miraculously, Governor Rendell from the great state of Pennsylvania appeared and committed to introduce our resolution for a vote from the Governor’s. We won!

Day three we held a press conference to announce our assessment of the ten worst states in terms of failing to offer decent community alternatives to nursing home incarceration. We also marched on the regional HUD offices, but this turned out to be somewhat anti-climactic. The regional director came down as soon as he heard we were there and agreed to pass on our demands to Alphonso Jackson—the national HUD secretary. That was it! All our demands were met in record time—ADAPTS power and reputation continue to grow and DRAC is a vital part of it.

Day four we strategized for the national group and reported on individual state efforts. That afternoon there was a solemn ceremony where John Hoffman’s ashes were scattered into the ocean. At the same time, our own Ricki Landers took to the skies parasailing. It was an exciting adventure for her and she took off from the back of a boat in the middle of the bay, soared hundreds of feet in the air, and somehow managed to land safely back on the boat.

Of course, the other highlight of the trip was our surprise birthday bash honoring Barbara Toomer for her 75th birthday, for her founding role in ADAPT, for her lifetime of selfless service to the cause and our members. Jim Glozier produced a video with highlights of Barbara’s life and testimonials from many who know her best. Bob Kafka presented her with the Grandma ADAPT “piggy bank” gift. Flowers, cake, a beautiful song honoring Barbara and the evening and Action were complete. Barbara, we love you, we honor you, and we thank you for your service to us!

I have just a few personal thoughts and memories about the Seattle Action. Several years prior to the action I took my three boys to Seattle as a family vacation—my oldest son was into Nirvana and this was the birthplace of Kurt Cobain! When we arrived, I was taken back to powerful memories of a wonderful family time and place I never thought I would ever see again.

Most actions are very spiritual experiences for me, but this particular action was almost bookmarked between two very powerful spiritual experiences. We started off with a Native American ceremony. Frank Lazano lit sage and sprinkled ashes against the background of the beautiful Seattle harbor. Various speakers also reminded us of why we were there. The other bookend of these spiritual experiences was sprinkling John Hoffman’s ashes into the ocean. I remember John’s powerful voice at the Philadelphia to Washington march. It was a beautiful moment to honor his request to scatter his ashes at an action. I was reminded once again of the profound impact ADAPT has, not just on the policy makers but on each of us who are adopted into a 500 member family.

My second memory or impression was with the power of ADAPT—both in our actions, which were perfectly planned and executed, but also in winning allies to our cause. It was really a combination of—our actions, the news media attention and Governor Rendell’s support of our cause that got an important resolution passed in favor of MiCASSA. I was not just impressed with the collective power of ADAPT; what I saw was a pride and sense of individual power in the eyes of each member of ADAPT. I knew that with society’s prejudices and repressive attitudes towards individuals with disabilities that the pride wouldn’t be there without ADAPT.

ADAPT’s successes can’t be measured alone in resolutions or even legislations passed. ADAPT’s legacy encompasses changes in the life of each member who participates in and individually drinks of the pride and power that ADAPT imparts. It was on this action that I first began to understand the concept of disability pride.

While I was on vacation with my sons, we took the last of our savings and went parasailing; a truly memorable experience. While watching others parasail on the bay Ricki said she wished she could parasail. ADAPT has taught me that few things are impossible. I remembered that we took off from and landed on the deck of the boat, so I told Ricki that I was certain she could parasail. Arrangements were made and it was another great personal moment when I saw Ricki take off and fly over the bay.

Finally, there was Barbara’s 75th birthday party. Like so many others I love Barbara. I am in awe of her insight and savvy when it comes to understanding people, strategizing and negotiating. She has been a mentor to me. While it is fitting that we honor our dead—our fallen heroes, it is imperative that we also honor our living heroes. The video of highlights from her life was very moving. It was wonderful to see the tremendous outpouring of love and admiration for Barbara, who has been a pillar in our movement for so many years.

Maybe it was just that I was still relatively new to actions and was impressionable, but for all these reasons the Seattle action will always be memorable to me. Now Seattle has two powerful sets of memories for me—an earlier one with my sons and a later one with my ADAPT family.

[youtube https://www.youtube.com/watch?v=ZJ3k4xexHNI&w=720&h=405]

FREEZE OUR PEOPLE

“We’re on our way, to Washington; we’re going to pass MiCASSA. We’ll roll over the tush of G. W. Bush if that’s what it takes to pass MiCASSA.” Personally, I wouldn’t mind rolling over…. but I digress.

The weather was terrible. We spent the night in parking lots sleeping and freezing

We were in DC and because we were there early and “old timers” in ADAPT we were included in a scouting trip to get the lay of the land. We went to the Marriott Hotel and to the White House. We’d be going back, with a bunch of friends.

It was a great day, greeting our old ADAPT friends and meeting newcomers

Sunday we had a newcomers meeting so that the new ADAPTers knew what to expect; also a legal meeting, to make sure everyone had their paperwork taken care of.

We went to the Marriott that evening and let the governors’ association know we’re around and encouraged them to support “Money Follows the Person” and “MiCASSA”.

Bob announced we’d be on our way at 7 A.M. the next morning. Unfortunately, this wasn’t a mistake, Bob meant 7 am.

I shared my willingness to get arrested at this action. Professors at New England College had promised extra credit for an arrest and I fully intended to take them up on it.

Bob said, “Think Monday.”

We were on our way to the Marriott at 7:15. We showed up before the 8 am police shift. We blocked doors and streets making it necessary for the governors to have to exit through the back and be hustled away to buses to get to the White House.

I was in the front group as the number one candidate for arrest and barreled my way towards the front door hoping to make entrance before they realized what was happening. Unfortunately, the security folks at Marriott were on the job and managed to keep us out, just barely. One security officer grabbed my scooter, yelling “You’re not going any further,” pretending to push me back, he pushed me into the perfect position to be able to go through the door if the opportunity arose. It was evident he knew exactly what he was doing.

One governor managed to get out of the building to his car but couldn’t go anywhere. He was indignant. “Do you know who I am?” He ended up experiencing the indignity of having to rejoin his colleagues and take a bus to the meeting at the White House.

We didn’t want them feeling neglected, so we followed along. The snow gave rise to a new song. “Pass the resolution; you know it’s our solution. ADAPT ain’t gonna go, let it snow, let it snow, let it snow.”

We gathered in front of the White House, blocking off the street and letting folks know we were there. Bob and a couple color leaders asked if I was still willing to be arrested. I realized they had something big in mind; maybe a little more than I had counted on. We’re talking extra credit as well as civil rights, so of course I replied that I was, the box of chains was brought out and I was chained to the front gate of the White House.

I took a deep breath. Was this going to be the time I would find myself dragged off my scooter and hauled off to jail, possibly being hurt in the process? One lady had been hurt earlier at the Marriott when an overzealous policeman had struck her, knocking her and her manual chair over. I waited; the officers stood watching, but took no action.

“Pass the resolution NGA” Finally we marched back to the hotel in victory. The police watched as we left and were along our path as we returned to the Holiday Inn.

I am shocked to be told that I am now a part of history as the first person ever to be chained to the front gate of the White House and allowed to stay there till I chose to leave, not being arrested or asked to detach myself.

The next day we visited our senate and congress critters. . We went to each office, so that no one would be overlooked and possibly feel hurt or neglected. I was surprised at the number of Health and Human Services people who were out sick. Must be something going around, could that something have been ADAPT?

[youtube https://www.youtube.com/watch?v=e-F5oSIUXCc&w=720&h=405]

September 2005 was probably my 12th national ADAPT action. More than half of those have been in Washington, DC, and I never get tired of going to DC. I enjoy the city, for sure, but more so I enjoy the breadth of action targets ADAPT has in DC. September 2005 again demonstrated that breadth in ways that would propel ADAPT closer to our goals.

Many times with ADAPT, Sunday is a lightweight action. And while this trip’s Sunday action was not going to push for arrests, it was by no means lightweight. I was a color leader for this action and the orders were clear – be prepared for a loooooooong march. We spread word to ADAPTers the night before and during the morning… wear comfortable shoes, charge your batteries, bring some snacks…

ADAPT rolled. And we rolled. And we rolled. And rolled… well, you get the point. Moving five hundred people with all sorts of disabilities is a long process. Moving five hundred people with all sorts of disabilities FIVE MILES is a really long process. Moving them to the private residence of then Senate Majority Leader Bill Frist – PRICELESS!

ADAPT gathered our forces at the gates to Senator Frist’s posh home – chanting and performing street theater. I remember Kathy from Kansas climbing part way up the wall and with a bullhorn leading the ADAPT crowd in chants. Johnny Crescendo, Rick Knight, Bob Kafka and others were covered in red paint in the middle of the street in front of Frist’s house. We wanted to make sure Frist’s neighbors, and the rest of the nation, knew that Frist’s inaction on MiCASSA was killing our people.

ADAPT was up and rolling early on Monday. We were heading to Congress to do “legislative visits”. Well, we did visit some legislators, but not in any traditional kind of way. Half of ADAPT went this-a-way… (to the Senate side of Capital Hill), while the other half went that-a-way (to the House side of Capital Hill). ADAPT split into color groups and took over the offices of the Democrat and Republican leadership of the Senate and House! I was lucky enough to be part of the group that paid a “visit” to Senator Frist’s office! I have to say, it’s not quite as posh as his residential neighborhood…

Within no time at all, the Capital police were in each office, trying to deal with ADAPT while negotiations took place. I remember in Frist’s office we had chants going long and strong. Shelly Perrin and I were hollering incredibly loud. There was a reporter from “Roll Call,” the newspaper for Congress that must have taken about 1000 pictures of me as I crushed the air out of my lungs to yell louder. The next day, Roll Call featured a story about the protest, including a picture of me shouting and a picture of Tim Wheat being carried out, under arrest. 104 ADAPTers were arrested that day. Go ADAPT!

In true ADAPT fashion, with people not getting back from their arrests until 6 AM, ADAPT was up and ready to roll at 10 AM the next day. Today, the mass of ADAPT was staying together, except for the newly formed “Rainbow Group” which boarded vehicles as the rest of us rolled out on the streets. The Rainbow Group was said to be traveling to far-far-away-land on a special mission.

ADAPT swarmed the building, shutting down the main entrance and setting up an audio system. We chanted, belting out our demands for “accessible, affordable, integrated housing”. We demanded a meeting with HUD Secretary Alphonso Jackson – something no HUD Secretary had ever granted in any of ADAPT’s many visits.

But this time was different – not because Secretary Jackson is that much more open that his predecessors – but because the Rainbow Group had gone to Jackson’s House in the DC suburbs! This time, it’s personal! As the ADAPTers in the Rainbow Group arrived at Jackson’s house they were greeted by a swarm of police. As word spread to our group at HUD HQ, we erupted in cheers… and Jackson agreed to come down and meet with our leadership.

[youtube https://www.youtube.com/watch?v=ncpidJUOTPk&w=720&h=405]

Well, there I was riding the lift up and into a Paratransit van as I was being arrested with over 60 of my brothers and sisters for blocking off the street in front of the Tennessee State Capitol. It’s amazing how you can’t get a paratransit van when you need one, but they sure can be ready to haul the bunch of us to jail. Two days, two arrests, but this time, the Nashville Police are actually taking us to the processing center. Jail, is not my concern it’s really no big deal. While riding the lift I remember thinking, here I am going to jail and I’ve never felt so liberated.

So, here is how I ended up on that lift…

…it all started Sunday with the Real People, Real Voices National Forum. Nearly 100 individuals gave testimony of the struggles they faced while locked away in nursing homes and other institutions and the fights they endured to move to the community. Everyone on the planning group knew this would be powerful stuff, but these stories moved everyone. Raw, powerful, honesty can do that to people and it set the tone for the next day.

Winter in the south, it was one of those cold, wet and drizzly days and everyone was down early, fired up and ready to put on extra coats, ponchos and bags on our feet. The energy is amazingly high, like I said raw, powerful testimony really has folks fired up. We march from the hotel to our first stop, War Memorial Plaza. The Plaza is actually on the roof of the Tennessee Legislators offices, which are built into a hill, partly underground, directly in front of the Tennessee Capitol.

With the ADAPT troops lined up we speechify why we’re in Tennessee, because it’s one of the Ten Worst states in providing community services, how the Governor has tried to even reduce services and threatening to put more of us in institutions. After the speeches we do a maneuver that would make a U.S. General proud, using different exits off of the Plaza we split into two different groups. These two groups march through the streets that make the block around the Plaza, leaving groups behind at strategic intersections. Within minutes all traffic to or from the Capitol, Legislative Plaza and even the parking garage to the state building is blocked off. Downtown Nashville is at a standstill.

Legislators keeping coming out, but we want the Governor! We’ve owned the streets since 1pm and at 5:30 arrests begin. On this night they ticket and release us, but it takes hours to clear all the intersections.

Tuesday is another cold wet day, but it’s a beautiful day to exercise power. We march back up to the capitol, only this time we line up on the sidewalks in front of the capitol. The Governor had said in the news we were troublemakers and wouldn’t meet with us. So a group of us, about 60 strong try to make our way up to the capitol only to be confronted by several State Trooper vehicles, and an unknown number of Troopers. After some confrontation a Trooper calls us “professional protesters”, I reply, “I’m not a professional, I’m a pissed off American.”

We go to join the rest of our Brothers and Sisters, the police and troopers are trying to keep us out of the street. Then I notice a curb cut in the middle of the block that the police don’t have blocked. Everyone is tight behind me so I decide to take it. Before the police can do anything the sixty of us have done exactly what they were working so hard to stop, we have filled Charlotte Ave, blocking the street off directly in front of the Capitol. The atmosphere gets tense, the police and troopers are upset, ADAPT owns the street in front of the Capitol, again. About two hours later I was riding the lift, feeling liberated as I was being arrested.

There was still another day left. We’d go to the Medicaid office, the Bureau of TennCare, and the local HUD office. We never met the Governor, but all in all, we forced many in Nashville to face us and hear our issues. The state has made numerous changes for the better since that action and many in the state felt a sense of power they had never experienced. POWER TO THE PEOPLE, ADAPT!

[youtube https://www.youtube.com/watch?v=9ttsnnb9vu0&w=720&h=405]

After a long nights drive, Wisconsin ADAPTers were relaxing in the courtyard and lobby of the Holiday Inn Capitol. As we sat around waiting to get our luggage up to the rooms, my mind inevitably wandered to the coming action. The magnitude and the importance of the issues that brought us to DC from all over the country DC seemed a bit overwhelming. Who would we “Visit” in order to secure for our brothers and sisters, the same degree of freedom that I myself have long taken for granted? Alphonso Jackson from HUD? Maybe President Bush? How about some members of Congress? We would know come Monday. Might as well catch up with old friends and see what jumping.

Monday morning; cool, I got to the elevators early enough to get downstairs before the big rush. We were all in a “No More Excuses!” frame of mind so it felt like a great theme for the action. No More Excuses for the lack of community based services; No More Excuses for the lack of accessible, affordable housing and No More Excuses for the lack of choice far too many of us endure.

Day 2, Tuesday: The ritual of lining up in color groups is well under way (is it red, blue, yellow then green?) Color leaders make their way through the crowd “single file,” and “leave a path,” sounds its way across the courtyard to the front of the hotel. Finally, the first person rolls off the curb, and we were on our way to the target! Marching in single file, looking like a long snake on wheels, we march to the Grand Hyatt Washington Hotel, to visit Timothy G. Kaiser, the Director of the Public Housing Authorities Association (PHADA).

About two-thirds of the way a smaller contingent of ADAPTers separates from the main line, and goes their own way to the Hyatt. My mind races through possible scenarios: Will we get in? Do they know that we are coming? I see the open garage entrance, and silently we roll in and through a short hallway into the spacious hotel lobby. The disciplined line melts, and we spread around looking like so many tourists.

By the time the last ADAPTer rolls in we’ve become a raucous chanting crowd, “We want Kaiser, We want Kaiser!” Shortly after we begin our chant we get our meeting with Kaiser and a follow-up meeting with PHADA. One more step to “Access Across America.” By then word had filtered back to our group that the smaller ADAPT group who had hit the Council of Large Public Housing Authorities (CLPHA) was about to be arrested. The smaller group had made it to the 9th floor of the offices and packed the hallway.

The unhappy CLPHA staff refused to contact the director and let him know that ADAPT members wish to speak with him. Not to be out-smarted the group contacted a member back home who was able to get the phone number for the board president, Sandra B. Henriquez. Ms. Henriquez agreed to an October 4th meeting with ADAPT. These meetings were an important step towards freedom for many people in nursing homes, as the housing authorities have the ability to target portions of their vouchers to people moving out of institutions. After rounding up everyone at the hotel we linked up with the smaller group at the national mall to head back to the hotel.

Day 3, Wednesday: Morning line up ritual completed, we marched off to the lobby of another hotel (I really like those big hotel lobbies, chanting really echoes nice). This time we go to the Capitol Hilton where the American Associations of Health Plans (AAHP) and the Americas Health Insurance Plans (AHIP) are holding their national conference. Managed care is rapidly moving into many states – our home state, Wisconsin being one of them. For better or worse that is the reality for many people.

So, ADAPT was going to make sure that we got the jump on that aspect of service provision. Many folks in managed care states have major concerns with medical models and losing any choice they may have within the Long-Term Care System. Our goal is to make sure that collectively the managed care associations and the providers they represent commit to principles of choice and control and work with ADAPT to make the goal a reality.

ADAPTs message came through loud and clear in the form of several “cows” roaming through the crowd while we chanted “we’re not cash cows!” the amount of noise echoing through the lobby is amazing as we wait for representatives from the associations to talk to us regarding our demands. Before long, arrangements are made and approximately ten members of ADAPT meet with association representatives to talk a bit and schedule follow up meetings. Once again we have experienced victory early in the day and march back to the hotel to celebrate.

Day 4, Thursday: We line folks up and march to the towering cement fortress that is Housing and Urban Development (HUD) in what is becoming a drenching rain. Before those at the tail end of the line can assume positions at the doors a delegation of HUD representatives have already escorted Barb Toomer from Utah and a delegation of ADAPT representatives to the inner sanctum and are negotiating our demands. Foremost on our minds was a letter to the public housing authorities that Alphonso Jackson had promised to send urging PHAs to make institutionalized people a priority for receiving vouchers.

When they hear the same old “we can’t do it” they turn to walk out. Realizing what they will bring upon themselves they rapidly change their minds (at least that’s what I think). Apparently they did not want to see how we would react to the unwelcome news that Jackson could not take the time to write a letter. One of the negotiators Jose Lara said they went “no, no, wait. We can deliver the letter.” After the change of heart the deputy secretary came out to announce to the crown that the letter would be there by November 1st. After a quick lunch of ADAPT burgers we march off to our next destination.

The Republican Party Headquarters isn’t really all that big, but the trick will be to get into it. Bruce Nelson from Rochester dresses unusually for the day – no sign of ADAPT anywhere on him. He arrives at the headquarters and wanders around inside shortly before ADAPT turns the corner and heads for the building. Bruce makes sure the door is open and once again we flood into the headquarters. As it is filling we circle around to the back, making sure we control the garage and back doors.

Once again it doesn’t take long, and Thomas Hosefiak of the RNC signs a letter committing chairperson Ken Mehlman to a meeting with ADAPT. Our legislative success with Money Follows the Person could use Ken’s help as it heads towards the states, and the RNC has yet to endorse MiCASSA. Once again the speed of our victory shocks me as we line up to go back to the hotel. Knowing this will be the last action of this visit, I feel a bit deflated. But, the rain has finally stopped, I am going back to the hotel to have a drink with my long time friends, and we will live to fight another day. Do I believe all the promises that have been made will be kept? Well, let’s just say I think we will be coming back to D.C. again sometime soon.

As expected, it was a warm day in our Nation’s Capital for the last week of April. My motorized wheelchair was all souped-up for the Fun-Run Sunday in upper Senate Park. Participants ran or wheeled laps around the park to raise money, with half of the proceeds going to their local ADAPT chapter and the other half going to National ADAPT.

I collected $400 from friends and colleagues in Chicago, so I wasn’t going to disappoint either them, or my fellow ADAPTers. I ran -eh rolled 38 laps around the park.

On Monday we really hit the pavement by marching to the Rayburn Building on Capitol Hill. ADAPT invaded the offices of Rep. John Dingell (D – MI) and Rep. Joe Barton (R-TX) and the hearing room of the Commerce, Energy and Health Committee to hold hearings on The Community Choice Act (CCA) H.R. 1621 and S. 799. While about a hundred ADAPT activists were occupying the offices, the other ADAPTers filled the horseshoe driveway in front of the building chanting, “The Community Choice Act, Now!” Protesters used whistles to punctuate their boisterous chants.

I was one of ninety-nine protesters who were arrested. We were taken to the Capital’s garage where they s-l-o-w-l-y processed us. The last arrestee was released at 3:30 a.m.

Victory! We were promised a hearing on the bill before the end of the year.

The week only got better. We didn’t have to “visit” HUD as we normally do in D.C., Secretary Alphonso Jackson came to ADAPT instead. He met with 50 ADAPT delegates at our hotel to discuss housing issues and then he visited the ballroom to meet with the whole gang. He greeted ADAPT by saying, “I came to you.”

He later told the group that “Fair Housing is a right.”

Highlights of Jackson’s commitments to ADAPT:

Inform ADAPT by September during its action in Chicago on how many housing vouchers for persons with disabilities he has recovered from the 58% loss in vouchers that the disability community suffered due to a combination of federal budget cuts and misappropriation of vouchers by local entities that administer the voucher program in communities across the country.

Jackson vowed to eliminate the “outrageous” level of discrimination in housing against persons with disabilities.

Promise to facilitate a meeting between ADAPT, Rep. Barney Frank (D-MA) and Rep. Maxine Waters (D-CA). Both of them serve on committees that are responsible for legislation affecting changes to segregated housing t people with disabilities.

Jackson committed to work with ADAPT on implementing ADAPT’s Access Across America Program, which would provide housing vouchers to persons with disabilities in nursing homes and ICFMRs that, combined with Money Follows the Person and previously existing initiatives to the states, will get people with disabilities out of these institutions and into affordable, integrated and accessible housing.

Promise to meet with ADAPT three times a year.

After meeting with Jackson, ADAPT marched up the street and stormed into American Hospital Association (AHA) building. We packed the first floor hallway to demand a meeting with the AHA to discuss better discharge planning and that they endorse CCA. A lot of our brothers and sisters go into the hospital, thinking they will return home but end up imprisoned because of piss poor discharge planning by social workers. The AHA agreed to meet with ADAPT in the next 30 days.

The last day we converged on Capitol Hill, urging all 535 Congressmen to be co-sponsors and support CCA.

I got arrested with 130 warriors for trespassing in front of the Rayburn office Building to drive the message home. After the arrest we were transported to an underground police garage on the Hill. It was a long and tedious process. I had a good laugh with my fellow Chicago ADAPTer, Darrell Price, regarding crip humor. You know, the moment you had to be there to appreciate it. I then spent the rest of the 8 hours with my friends, Sara and Jennifer from Vermont, sharing laughs. I don’t know why it was for such a jovial atmosphere. Probably it was the carbon monoxide that I heard that was leaking from that garage.

I finally got released around 9 that night. I waited outside of the garage for a group that was released and we rolled back to the holiday Inn. We hung outside of the hotel until the rest returned, in the wee hours of the morning. I felt a great deal of satisfaction at what we accomplished this week: The commitment from Secretary Jackson, the commitment from Congress to hold hearings on CCA and the good camaraderie among ADAPTers and beautiful weather.

“Our work this week has accomplished even more than we do,” ADAPT organizer Bob Kafka said. That what victory can do for ya.