[Headline] No More Stolen Lives!

[Subheading] ADAPT Sends Message To DC Policy-makers

As a welcome to DC, ADAPT opened the week's worth of actions with a sunset march and candlelight vigil at the White House. The Bush administration has given much lip service to Real Choice and increasing community services, but they have been stonewalling on many of the changes they have committed to ADAPT that they would make. In September they had committed to having their Money Follows the Person bill, known as The New Freedom Initiative Medicaid Demonstration Act, introduced by the end of the month. Here we were in March with no bill in sight. ADAPTers from around the nation were fed up with a President who, after such talk, was cutting spending for
community services in his FY 2004-2005

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[image caption] photo, by unknown probably Tom Olin, of ADAPT protesters Marching in the cold and rain by the White House Fence. In front several women are carrying a large dark banner which reads in white lettering "Stolen Lives: Real People! Real Voices! Real Choices!" and on either side of the message are to large Free Our People ADAPT logos. Behind the banner is a mass of people dressed in very warm outfits. In their midst is a man in a black hood carrying a sycle, the grim reaper.

Medicaid budgets.

So, led by those who had survived being stuck in nursing homes and other institutions, 500 ADAPTers marched through the cold winter evening and gathered in front of the White House for a candlelight vigil for those still stuck inside thanks to the institutional bias in Medic-aid, the Administration's failure to act, and the cuts that will worsen the system.

"For those of us at the end of the line, there was no room left on the side-walk, which was a good thing," explained Linda Anthony. ?With everyone facing the White House, we listened as person after

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[image caption] The Grim Reaper leads the march to the White House. Photo by Tim Wheat. A man [Michael Heinrich] in a full length black robe with a hood, and a long white beard and glasses, carries a sythe in front of him as he walks down a street by fenced in large government buildings. Above his head is a bare tree, bereft of leaves.

[text continues] person told how their lives had been stolen and how they came to be with us. I don't know about any-one else, but even as cold as I was, I felt warm as hell inside, to know that we were here together again, set and ready to fight these horrible injustices."

We want the President to hear loud and clear," said Cassie James of Philly ADAPT that we are tired of having to wait for our freedom, and we demand an end to the institutional bias. We want No More Stolen Lives!"

[Subheading] How Do You Spell Cold?

The sun wasn't even up, temperatures were in the low 20s but ADAPT -bundled in scarves, hats, gloves and ponchos - rolled out. Just 2 blocks over, un-aware of what was headed their way [Health and Human Services] HHS started their day" Linda Anthony remembered.

500 members of ADAPT staged a "lie-in" around the Health and Human Services Building Monday, demanding that HHS leaders restart the process to reverse the institutional bias and stop their

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[image caption] ADAPT blocks the front door of HHS. Photo by Tim Wheat

double talk about making change. ADAPT has always believed that actions speak louder than words.

By 7 am, when HHS employees began to arrive, a long string of empty wheelchairs surrounded the building. ADAPT has climbed down to the ground and into sleeping bags, ready for a long chilly stay. Carrying signs reading "we're lying, cuz you're lying," protestors chanted "It's cold, it's freezing, but ADAPT's not leaving" until meeting with top HHS officials.

"When our group arrived on the plaza, people were already dismounting" Linda Anthony reported. "With little regard for their own comfort, people climbed onto the white foam where they would spend the next 6 hours. Nothing would move them. Neither freezing winds, nor the lack of food made them leave."

"At our door, the Blue and Purple groups parked their power wheelchairs against the door." Chris Hilderbrant said. People then got out of their wheelchairs to lie on the mats on the ground. Vladimir Pelkah from Rochester led this charge commenting that it "would be a trip he would never forget."

It took six hours and near hypothermia for several folks, but ADAPT prevailed. With HHS Sec. Tommy Thompson out of the country, Dennis Smith, Acting Administrator for the Centers for Medicare and Medicaid Services, met outside in the cold with all 500 ADAPT members. Pressed by ADAPT, Smith issued a letter committing incoming CMS Administrator, Mark McClellan to a meeting with ADAPT within 30 days. With phone confirmation from McClellan, Smith also promised that regular meetings between ADAPT and HHS officials would resume.

"Four years ago when President Bush issued his New Freedom Initiative, and his Executive Order mandating implementation of the US Supreme Court Olmstead decision, we believed him," said Steve Verriden, Wisconsin ADAPT Organizer. "But here we are four years later, facing the worst Medicaid cuts in history, which will without a doubt keep people illegally confined in nursing homes and other institutions, and force even more people into those settings. This loss of personal freedom, and all the President's empty promises are unconscionable because they mean more stolen lives."

More and more states, in financial stress, continue to cut optional Medicaid community based services. The drumbeat for tax cuts ringing in their ears and Federal Medicaid policy requirements that they fund institutional programs, means states have little choice but to cut services. Bush's proposed cuts for the next year's budget will result in more people having no choice other than the nursing homes.

"As I sit here looking at all my colleagues, of all colors all disabilities, most of who have been in some sort of
institution or nursing home, I am continually reminded of how important the passage of MiCASSA is to people with disabilities. We need to have consumer control and community based services as mandatory components of the Medicaid long term care program. We cannot leave any person behind in this fight for free-dom." Bob Liston commented. "I have been in the nursing home and will not go back. This is a personal issue; this is a systemic issue for me. This is basic civil and human rights. This is a no-brainer!"

As the protesters received assistance to return to their wheelchairs, 15 ADAPT members met with Smith inside HHS to negotiate on the additional ADAPT demands. Smith and HHS agreed to meet one of those demands by issuing a "Dear State Medicaid Director's letter." The letter will underscore for states that they currently have the ability, with no regulatory or legislative changes, to move people from nursing homes and institutions by transferring the funding to the preferred community services. States like Kansas, Texas and Maryland have utilized this approach to move many people out of nursing homes and can offer information and guidance to other states.

Further, the letter will encourage all states to utilize this strategy to provide more home and community based services, as per the US Supreme Court Olmstead decision that ruled that forced institutionalization of people who can be served in the community amounts to illegal segregation.

We're here in Washington to meet with everyone who can help us remove the institutional bias in Medicaid", said Shona Eakin, ADAPT Organizer. l'That means people in the Medicaid system, like today, and people in Congress who can hold hearings on and pass MiCASSA (S. 971 and H.R. 2032) and the Money Follows the Person Act (S. 1394). And we won't give up until all disabled and older Americans have choice in where they live and receive the services and supports they need."

[Editors Note: ADAPT met with CMS Administrator Mark McClellan on April 28th.]

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[Subheading] Congress Gets the People's Hearing!
Tuesday March 23rd started easily enough. We didn't pull out of the hotel until 9:00 AM, headed for the hill armed with DVD's of our 144-mile march .to DC and our ?STOLEN LIVES" testimonials. Motorcycle cops tried to stop the line, but ADAPT moved forward. ADAPT folks visited every House Office to drop off information and urge support for MiCASSA and Money Following the Per-son. Linda Anthony quipped ?getting into the building through security took longer than it took to distribute a DVD and book to each and every house member." A bomb scare turned out to be a false alarm, but it slowed folks down for a bit.

A quick lunch in the park, and we were off to the Senate. Many hours later, our materials were distributed and all of ADAPT converged on the Senate Finance Committee room. "A steady flow of ADAPTers soon filled the hearing room to capacity and ADAPT convened a people's hearing on MiCASSA," explained Chris Hilderbrant," because Senator Grassley and the Senate Finance Committee had failed to act. Powerful chants soon disrupted "business as usual" for that entire hallway of the Dirksen building. Chants demanding a MiCASSA hearing echoed throughout the halls."

Driven by years of frustration and lie after lie, ADAPT members saturated the hearing room and halls outside. Senator Grassley's staff soon appeared but negotiations fell completely apart when his Chief of Staff refused to put their offer in writing nor would Senator Grassley come to speak to the ADAPT activists.

Hilderbrant continued, "negotiations with Sen. Grassley's staff broke down when they refused to commit to anything in writing. With little hope for resolution, ADAPT was determined to stay." Too many broken promises and tired of being ignored, ADAPT would cooperate no longer. Seven solid hours of chanting told Congress this was no small matter.

Finally, around 6:30 pm, the Capitol Police began reading warnings. More than an hour later, they finally began arresting us and 135 people and 12 hours later at 6:30 AM they were done!"

The chanting inside the hearing room never let up. Those of us that didn't fit in the room could feel the energy through the walls. It fed our anger and our resolve" Hilderbrant said. "We'd rather go to jail than to die in a nursing home," and that's what we did.

On Wednesday, however, representatives of ADAPT and three other organizations, the National Council on Independent Living, Paralyzed Veterans of America and Advancing Independence Modernizing Medicare and Medicaid, met with Finance Committee ranking Democrat, Senator Max Baucus (MT), who committed to add MiCASSA and MFPA to a Hearing that had quickly been set for April 7 to focus on ending the institutional bias in Medicaid long term care. ADAPT would testify at the hearing.

[Subheading] Why Doesn't AARP Care if Low Income Seniors are Forced from Their Homes?

Also on Wednesday, hundreds of ADAPT members followed up on a long term concern we have had. Namely, why AARP is apparently fine with having seniors on Medicaid forced from their homes and into nursing homes because of the institutional bias in the system. ADAPT has raised the issue with them before, and they try and duck it. But with many of the people coming out of nursing homes being well over 65 (70% in Texas where money follows the person has had the longest track record), it is time for their so-called advocates to get off their duffs and show support for real choice, MiCASSA, and Money Follows the Person. So ADAPT marched over to AARP Headquarters and
Incitement delivered a letter to CEO William D. Novelli, calling for a meeting to work on ways AARP can actively support MiCASSA, and continue to partner with ADAPT on issues of mutual concern. AARP committed that the meeting will take place before July 4th.

"It's no wonder they want tighter security than some Congressional office buildings," remarked one 67 year old in the crowd, "as they sit there in their marble towers and deal away Senior's Medicare and now their right to grow old in their own homes!"

[Thanks to Marsha Katz, Linda Anthony, Chris Hilderbrandt, bob Liston and Tim Wheat for their contributions included in this article. For more details and pictures visit the ADAPT website www.adapt.org]

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