“No More Excuses!” The ADAPT Action in Washington DC September 11 – 16, 2006

By Tim Wheat 

ADAPT arrives in the Nation’s Capitol to demand action not explanations.

ADAPT Action Report: Monday, September 11, 2006.

“No More Excuses!” is the message hundreds of activists from across the nation are bringing to the Capitol today. ADAPT is in Washington to remind the Congress, the Administration and US States that Americans prefer the community and expect action not excuses to end the institutional bias, gain equality in housing and continue to have choice in health care.

The continuing focus of ADAPT is to destroy the barriers that force families apart and people with disabilities into nursing homes and other institutions. Likewise, ADAPT is working to keep older Americans and persons with disabilities in their own homes in the community with the services and supports they need. The lack of affordable, accessible, integrated housing, the lack of personal assistance programs in all states, and the movement to integrate long-term care services and supports into state acute health care managed care plans are the specific obstacles that ADAPT will overcome.

The President's Deficit Reduction Act provision of Money Follows the Person (MFP) reflects progress in the availability of Medicaid-funded personal assistance. MFP allows people to move from nursing homes and other institutions and have the funding that pays for their services and supports move with them to their new home in the community. The federal government is strongly encouraging state participation in MFP by making additional funding available to states that assist people to move from nursing homes and other institutional settings back into their communities; however, states are not required to participate in the federal program.

"The next step is for Congress to pass MiCASSA (S.401 - H.R. 910) so people are not forced into nursing homes and other institutions in the first place," said Tennessee ADAPT Organizer Randy Alexander.

A federal Medicaid requirement for states to provide institutional service has become an excuse for states to continue to funnel money into expensive and undesirable institutions. Ending the “Medicaid bias” to institutions has been a aspiration of ADAPT for over ten-years. But ADAPT is not the kind of group to only point out what is wrong – ADAPT supports proactive legislation to correct the bias, has developed policy from the experience of people with disabilities and creates methods that will work. 

The Medicaid bias was began over thirty years ago in the forming the Medicaid program. At that time, Americans with disabilities were expected to receive long-term services and supports in institutions, and Medicaid statute made institutional care mandatory for a state to qualify for the federal Medicaid funds. Since the 1990 Americans with Disabilities Act, citizens expect inclusion in the community. The for-profit nursing home industry, that has developed from the exclusive federal guarantee of Medicaid funds; however, sees the desirable and cost effective home and community-based services as a threat to their profits.

"As we move out of nursing homes and other institutions, we need affordable, accessible, integrated housing to move into," said Cassie James, Philadelphia ADAPT Organizer. "An obvious place to start is with the nation's Public Housing Authorities (PHAs). The PHAs have the ability to designate Section 8 housing vouchers specifically for use by people leaving nursing homes and institutions who are receiving home and community based services. We need to make sure the PHAs do just that- No More Excuses!"

Three summers back, in 2003, ADAPT activists lead the successful Free Our People March, a 144-mile civil rights march from Philadelphia to Washington DC to highlight the need for choices in long-term care. More Americans are demanding an end to the Medicaid bias that favors facilities. People with disabilities are leading the march to change the Medicaid bias and give Americans choices.

ADAPT is likely the most diverse group ever known. Most people notice the large number of wheelchair users in ADAPT, but ADAPT represents a broad spectrum of disabilities, as well as, diversity in race, creed, gender income and family status. ADAPT is a varied yet highly organized family.

Large and Small Housing Authorities will meet about accessible, affordable, integrated housing.

ADAPT Action Report: Monday, September, 2006.

“We want Kaiser!” echoed throughout the Hyatt on Capitol hill as over 400 activists took over the hotel lobby and elevator’s demanding a meeting with the Executive Director of The Public Housing Authorities Directors Association: Timothy G. Kaiser. ADAPT demanded and got that meeting and additionally secured a meeting with the Council of Large Public Housing Authorities (CLPHA) in order to get people out of expensive institutions and into their own homes.

ADAPT’s “No More Excuses” campaign began today with the largest grassroots direct-action group of people with disabilities aiming at the issue of housing. People with disabilities have been cut off and put out-of-sight in nursing homes and institutions for too long. Nationwide Housing Authorities have the opportunity to help remedy the social policy blunder, so ADAPT activists demanded change and brought suggestions on how positive change can be accomplished.

Action on the housing issue is essential due to ADAPT’s success in getting Money Follows the Person (MFP) legislation passed this year. MFP will allow the money that was spent on a person in an institution to follow them into and help them to move to the community.

“One of our biggest obstacles,” said Jimmi Shrode of Philadelphia ADAPT, “has been the lack of affordable, accessible and integrated housing.”

The threshold to get into reasonable housing makes it difficult for institutionalized Americans to return home or get out of the institution. The grassroots experience of ADAPT, actually working to help people to get out of nursing homes, points to answering the simple question of “where will you live?” ADAPT’s proposal Access Across America is a direct answer to that question and a liberating call for our social policy to correct the isolation and confinement of people with disabilities.

Early this morning, ADAPT members were involved in training sessions at their Capitol Hill hotel and gathered to leave before 10 a.m. The group chanted as the long line of 500 activists snaked across the mall and into the business district. The main body of the group turned east on “E” street, but a group of about 50 broke off and headed west.

The larger group was targeting the Legislative Affairs Convention of PHADA held at the Hyatt Regency Capitol Hill. The Public Housing Authorities Directors Association or PHADA was founded in 1979 and represents the professional administrators of approximately 1,900 housing authorities throughout the United States. The housing authorities PHADA represents have the ability to link housing vouchers with Medicaid-eligible people transitioning to the community from shelters, nursing homes and other institutions. ADAPT is asking that PHADA endorse the proposal “Access Across America” to assist people with disabilities moving out of institutions, to increase the supply of accessible units and to make modifications to inaccessible units.

The single-file line of ADAPT turned off the street and into the underground parking garage of the Hyatt. The garage entrance became the accessible route for hundreds of activists to pack the lobby of the hotel where the PHADA Legislative Forum was taking place. At 11:00 a.m. with the lobby filled with activists, the chant rose up: “We want Kaiser!” 

Other activists put up signs on the stairs and landings of the posh hotel lobby, while anxious Hyatt staff worked to take down signs. Many ADAPT members held a long banner that read: Affordable, accessible, integrated housing. The banner was so long, it had to meander through the crowd and wind around the escalator. Metro Police stepped in to negotiate with PHADA, and before noon Timothy G. Kaiser, and Policy Analyst Jim Armstrong of PHADA agreed to a September 25 meeting with ADAPT.

Just before news of the victory with PHADA, word spread that the team at CLPHA would be arrested. The smaller ADAPT group had successfully made it to the ninth floor offices at 1250 Eye Street and packed in from one end of the hall to the other.

“The staff here at CLPHA were not happy to see us,” said Nancy Salandra of Philadelphia ADAPT. “They had an attitude and were lecturing us like they were the oppressed little guys and we were worse than the dirt on their shoes.”

In true ADAPT fashion, when the office staff became a barrier, like “water around a stone,” the negotiations flowed past the office employees. CLPHA agents would not provide a phone number for the director; however, Imaginative activists linked up with a resourceful individual in Kansas who got the number. CLPHA Board President, Sandra B. Henriquez, Administrator of the Boston Housing Authority agreed to an October 4 meeting.

At about 1:30 the two ADAPT groups linked back up at the National Mall as they headed back to the hotel. 

“The power of ADAPT – I love it,” said Ronnie Patrick of Chicago. “I love when we split up and have an extra surprise target.”

Most of ADAPT met for a couple of hours to get acquainted and deconstruct the day’s events. A dozen ADAPT activist met with a delegation from the US Conference of Catholic Bishops. The meeting grew out of a regional ADAPT action this past summer. ADAPT members had disrupted a Bishops Conference and confronted them about support for dignity and choice for people with disabilities. The Bishops agreed to send a delegation to speak to ADAPT.

Kathy Curran, Jan Benton, Lisa Smith and Jerry Freehold gathered in a small conference room with ADAPT for about 40 minutes. Cassie James, fresh from the success at CLPHA facilitated the meeting. Janice McGrane of ADAPT, and a nun, began the meeting with a prayer.

“I get attendant services,” said Ms McGrane, “they are vital in my life. I think the church has started the ministry [to people with disabilities] and I am with ADAPT because it is crucial that people leave nursing homes.”

The delegation ended their stay by speaking to the large group of ADAPT gathered in the ballroom downstairs.

“We are not cash cows!”

ADAPT Action Report: Wednesday, September 13, 2006.

ADAPT took over the lobby of a Washington DC hotel and demanded that national managed care groups will meet with them and consider essential principals for people with disabilities. US states may expand use managed care as a tool to control costs. ADAPT struck today to ensure that gains made over the past 30 years for people with disabilities are included in managed care plans for Medicaid long-term care.

ADAPT marched across town to stave off problems that could arise from more Medicaid long-term care being handled by Managed Care Organizations (MCOs). Grassroots advocates are concerned that a shift to more managed care by US states, for Medicaid long-term care, could result in turning back many of the gains that have been made. States have stalled in their implementation of the 1999 Olmstead decision that required services in the most integrated setting, and new MCOs may not see Olmstead as a priority.

ADAPT asked Karen Ignagni, the President and CEO of America’s Health Insurance Plans (AHIP) to develop a national proposal that will respect the principles of community integration, consumer direction and Independent Living. Ms Ignagni agreed to present the ADAPT principals to the governing board and will meet again with ADAPT in 30 days on the issues. She wrote a letter in her own handwriting to confirm the progress with ADAPT.

“It was good,” said Mike Oxford of Kansas about the negotiations with AHIP/AAHP. “They were honestly interested in working with us. [Karen Ignagni] was with the AFL-CIO and said she understood real people issues. Mostly, they know that they will need to work with us to meet their goals. They see that we can be good friends or powerful opponents, it is a new business opportunity in their minds.” 

“They were really interested in our issues,” said Cecil Walker of Kansas, “and I believe, they sincerely wish to work with us.”

Yesterday, ADAPT spent the day working to ensure that affordable, accessible, integrated housing is available for people with disabilities leaving institutions and nursing homes. As a part of the “No More Excuses!” campaign, ADAPT focused on preventing setbacks to hard-won concepts like consumer direction and Independent Living. The ADAPT campaign follows the success of national Money Follows the Person legislation, and charges that no more reasons exist to isolate and segregate people with disabilities with social policy.

“We are making sure that the national guidance to MCO’s includes our philosophy,” said Randy Alexander of Memphis. “They are there to make money, and in Tennessee the negotiate their way out of providing services for more profit. We know that the MCOs will continue but we want them to know our views and to keep our principles.”

ADAPT activists were able to file into the lobby of the Capitol Hilton where AHIP and the American Association of Health Plans (AHHP) were holding a conference. The staff at the Hilton were unprepared for the visit and hopelessly attempted to block the door, even after hundreds were packed into the lobby. Like water around a stone, the activists trickled past the constriction at the door and joined the mass of people chanting, “we are not your cash cows, meet with ADAPT now.”

“That was amazing how we were all able to slip into hotel number two after yesterday’s action,” said Stephanie Thomas of Texas who was with a couple hundred ADAPT activists that used the underground parking entrance to fill the lobby of the Hyatt Regency yesterday. “What a huge amount of noise we made. It was so loud that it was bazzar to be in that lobby when everyone had left. It was a stellar hit.” 

Some ADAPT activists dressed up as cows to emphasize the point that a move to managed care should not be seen as an opportunity to make money off the backs of people with disabilities. Long-term care services are vital to many people living in the community and being a part of typical American life. Changes to the program can have devastating effects on the civil rights of people with disabilities who demand to live in the community and not be locked away to make the target projection of their insurance company.

“This is my first action with ADAPT and the lobby of the Hilton was something I’ve never seen before,” said Toby Lusce of Topeka. “I usually just stay at home and don’t do anything. But my friend Paul O’Dell said he knows how to get me involved with something and that is how I ended up here. I love this and I am going to get more involved.”

Following the successful action at the Hilton, ADAPT marched back across town to the Sam Rayburn Office Building on Capitol Hill to listen in on the Judiciary Committee hearings on the 1990 Americans with Disabilities Act. ADAPT actvist at the ADA Hearing.

Recalling ADAPT’s take-over of the Senate Finance Committee in March of 2004 a guard at the Rayburn Building greeted an ADAPT activist by asking: “Will you behave today?”

The hearing addressed the practices of unscrupulous lawyers who file thousands of ADA lawsuits, claiming that the lawsuits are overwhelming and financially burdensome to small business owners to settle quickly. Former Congress member Tony Coelho was articulate in his support for the ADA redirected the focus of the inquiry to the civil-rights application of the law. He told of discrimination that he personally faced before the ADA became law and spoke of the Supreme Court’s limiting of the definition of disability.

“Someone from Senator Harkin’s staff just called to thank ADAPT for their presence at the ADA hearing and how glad they were that ADAPT showed support,” said Bob Kafka to the full complement of ADAPT gathered in the hotel ballroom. “That just goes to show the power of the grassroots. Even on these so-called ‘soft’ hits where there is no direct action, like showing our support, it is the grassroots that make a difference.” 

Twice the Success, ADAPT wins a meeting with the RNC and concessions from HUD

ADAPT Action Report: Thursday, September 14, 2006.

ADAPT’s “No More Excuses” campaign continued today with dazzling success with two traditionally stubborn organizations. ADAPT won a meeting with the, the chairperson of the Republican National Committee (RNC) and the Department of Housing and Urban Development (HUD) committed to write a letter to public housing authorities concerning a preference for housing subsidies for people with disabilities leaving an institution and needing housing.

Thomas Josefiak of the RNC was able to sign a letter making the important commitment for a meeting with Chairperson Ken Mehlman. ADAPT had success this legislative term with the passage of Money Follows the Person which was a bill to assist people avoid expensive and undesirable institutionalization. MiCASSA, the Community Choice Act is bipartisan legislation that can help complete the full inclusion of people with disabilities in our society.

“We have not been able to get in the front door at the Republican National Committee for the last five years,” said John Donnelly of New York. “We have been trying to make them talk about our issues, so it seems they have acquired some common sense. It would be wise for them to meet with us.”

Newt Gingrich first introduced an early version of the Community Choice Act nearly ten years ago. The hope is that the bill will have RNC support when it is introduced the next legislative term; Republican Senator Spector is the first co-sponsor of the bill. 

ADAPT has a history of direct action with the RNC. Most notably was in early October 2000 when ADAPT crashed a gala fundraiser at the site. Blocking all the entrances and exits, ADAPT held the white-tie crowd late into the evening.

“It was unbelievable that it came so fast,” said Daniese McMullen-Powell about the negotiations with the RNC today, “I didn’t expect them to agree to our demands so quickly. But now we have a meeting with Ken Mehlman after the election and before the end of the year.”

ADAPT activists also have a long history of direct action with HUD and with the renewed initiative started with the public housing authorities, ADAPT had to act to get the Department’s cooperation. A year ago ADAPT, through direct action, was able to begin a positive dialogue with Secretary Alphonso Jackson but the discourse has suffered recently.

“It is obvious that HUD is making a decision not to send a letter as they promised,” said Randy Alexander of Memphis. “Jackson said they would inform Housing Authorities about setting a priority [for people leaving institutions] and the only reason for a delay seems to be that they now do not want to simply write the letter.”

Ten minutes after leaving the hotel at 6th and C streets, ADAPT was in front of the menacing HUD building entrance. A delegation led by Jose Laura, Barbara Toomer and Bruce Darling of ADAPT were quickly led inside to negotiate, while hundreds of activists constantly chanted and sang outside in the rain.

“We told them that we have been waiting for so long for the letter and they were not going to do anything,” said Jose Laura of El Paso. “So we decided to leave. That is when they said ‘no, no, wait; we can deliver the letter by November third.’” 

The ADAPT team actually walked out of the meeting when the bureaucrats were not receptive; however, the Assistant Secretary Kim Kendrick apparently did not want to see how the mass of ADAPT would react to the news. A second round of discussions was arranged with HUD meeting the essential ADAPT demands.

“The Deputy Secretary Kim came out to talk to us and said the letter would be there November first,” said Barb Toomer of Utah who negotiated with HUD. “So, you know, if you trust them, the letter will be here. If things go the way have in the past, the letter won’t be here and next time the letter doesn’t come – it ain’t gonna’ be much fun.”

Shortly after the submission of HUD, ADAPT was back in line and in the streets headed east to the RNC headquarters. Soaked but invigorated by the success Cassie James of Philadelphia summed up the experience with HUD:

“Well I think we got the slow wheels of HUD turning again, I think it is ADAPT that keeps everything moving. They said HUD would put out the letter but they couldn’t get it out very quickly; but we upped the ante and now the letter will be out in November.”

Gathering altogether at the end of the day, Cassie James announced to the crowd that because of a summer regional action by ADAPT chapters on the east coast, the United States Association of Catholic Bishops supports MiCASSA. They signified their support by writing a letter to the Congressional team sponsoring the legislation. Cassie read selected parts of the letter to the group.

Diary of Friday’s visit to legislative offices 
by Tim Wheat

ADAPT Action Report: Friday, September 15, 2006.

I wake up startled just after 8:00 am. I am still groggy from staying up so late and the general exhaustion from the ADAPT Action yesterday. The alarm did not go off and my girlfriend did not call; I guess I just got up because I did not want to miss any of the action.

I realize that I have less than an hour to get ready and I really should get something to eat. But, I have so much to do that eating keeps getting bumped down the list until it falls off completely. I try to find National Public Radio on the Holiday Inn alarm-clock-radio and I end up listening to about five minutes of The British News Service before I realize I have missed the NPR piece done by Joe Shapiro this morning.

Joe Shapiro wrote “No Pity” in the early 1990s about people with disabilities struggle for equality. He did a great article about us on NPR today and notably credited ADAPT for getting Money Follows the Person passed this year. I encourage you to read the article, or listen to it on the web.

At 9:00 am we gather in front of the hotel. This is always a “hurry-up and wait” part of the ADAPT experience. Most everyone makes it out to the street at 9, but there is some unstructured time when you must wait and small talk with who is next to you.

This morning I spoke with Raul Zamarripa who taught me how to pronounce his name. My first attempt was embarrassing, but Raul was considerate. We talked about my home in Boulder and his home in El Paso. I vaguely recall the Hulca Tanks east of town from riding my bicycle through the area fifteen years ago. Raul tells me that they have had unexpected and devastating flooding this year.

I asked Janice McGrane, who negotiated with the American Coalition of Catholic Bishops what she thought was the best part of the action so far. I thought she would say getting the support from the Catholic Bishops and having them endorse MiCASSA in a letter to Senator Harkin. I was surprised when she told me that the visit to the Republican National Committee was her highlight. 

But, she said, she liked that we had the guts to go there and take over the lobby and building. Janice said that she was proud of our demands. We demanded that they support MiCASSA and Access Across America. I hadn’t thought of it that way, but now that Janice points it out, those demands are something to be proud of.

Wondering around the crowd along C street this morning, I asked a more general question to Mike. I actually met Mike when I was on my very first ADAPT Action ten years ago. So Mike has at least as much perspective as I do when comparing ADAPT Actions. I asked him what he thought stood out about this action.

“This was an easy successful action,” said Mike, “we had no arrests, no bullshit and no apologies. We accomplished our goals.”

Mike told me earlier he got a new job with the parks and recreation department that is more in his field of study. I didn’t mention to Mike that it has been ten years since we met. I wonder if we will be doing this ten years from now? Of course at our rate of success for this action we will be done next year. I wonder if Babs, Claude, Barbara and others thought the same thing following a successful action twenty-five years ago, or wondered if they would still be taking to the streets in 2006?

I caught up with Barbara in the lobby of the Hart Senate Office Building and she really is the most personable individual I have ever met. She also told me that she thought this action has been fantastic. ADAPT marches past the US Capitol Building.

“I don’t think I have ever seen people yield so quickly,” she said. “I think it comes from the fact that we do just what we say we will do. If we say we are not leaving this hotel lobby without you meeting our demands – then that is exactly what we will do. We have a reputation with the police and they respect us for it. They tell the owner or bureaucrat ‘yeah, that is just what they will do…’ and it makes what we say very valuable.”

Barb would say more, but she had work to do.

To get to all of the congress peoples offices ADAPT had split up into groups of about 50 and spread out to the various security checkpoints at all of the House and Senate Office buildings. Once inside the group would split up further into teams of 4 or 5 to visit all of the congress members on a particular floor.

After leaving the hotel, my group marched up Capitol Hill past the House Office buildings, the Library of Congress, the Supreme Court, the Capitol to the Hart Senate Office Building.

I can’t help but feel awed around the gigantic well-known marble buildings. They convey authority and history, yet; I see the power of our nation in the diverse multi-colored-t-shirt clad group lined up on the sidewalk. The buildings are nice to look at, but I am really proud to be part of this group. 

The object of the visits today are to deliver MiCASSA materials to all the Congress members, their offices and staff. MiCASSA, the Community Choice Act has a long history that goes back to before me. I was at the action in Atlanta Georgia in 1996 when Newt Gingrich said that he would introduce the bill in the next legislative session.

Back when it was introduced, the legislation was called CASA; it has gone through some changes that have made it a much better bill without being watered-down by compromise. MiCASSA is basically the same concept as when it was introduced nearly ten years ago. MiCASSA will be re-introduced in the 2007 legislative session and it will have its strongest support ever. This year it has a streamlined name: The Community Choice Act, to better describe the main advantage of the bill.

After the visits, I talked with Anita Cameron as we made our way back to the hotel. Anita is in a different group and I asked her how her visits had gone. She said that they were well received by all of the congress people, especially Senator Clinton who is a co-sponsor of the legislation.

“The Senator from Oklahoma brought the health-care policy person out to speak with us,” said Anita. “Most of the staff we met were also well aware of MiCASSA and ADAPT.”

I miss seeing Anita around Denver, she moved to Washington DC about a year ago. She is also one of the long-time ADAPT members who has much more perspective than me. I think about the ten years that I have spent working for MiCASSA, and I see the passion that she still brings to the fight. She and Dawn Russell led a constant chant and song session in the rain while our negotiation team was scrapping with HUD agents. I know that if the negotiators had needed all-night to make HUD see the light (they walked-out of negotiations once on Thursday), they could count on Anita to keep up the pressure from the mass outside. Teams gathering in the Hart Building

Sometime in the afternoon, my friend from Boulder Mike McCarty got back. He had been on the House of Representatives side of the Capitol and had more visits to make. He said that they had been treated very good by the congressional staff.

“My group went to see Representative Danny Davis (The Sponsor of MiCASSA in the House),” Mike said. “We didn’t have time to chat, he is already on our side, so we said thanks and went on from there.”

The teams delivered copies of the legislation, a press release and the transcript of the Day of Testimony. Six months ago in Nashville to kick-off our ADAPT action there, people who had lived in nursing homes gave public testimony about their experience living in an institution compared with living in the community. The personal narratives are a compelling argument for MiCASSA.

In the evening of the final day ADAPT celebrates together. This action, in particular is one to observe. From the duel hit on Housing Authorities, to the reverberating walls of the Hilton lobby, to the back-to-back success with HUD and the RNC, finally to the accomplishments of today this has been a success. 

- tw