Incitement

Volume 21 No. 1                       A Publication of ADAPT                  Spring 2005

 

ADAPT/Incitement

1339 Lamar SQ DR #101

Austin TX 78704

(512) 442‑0252 v/tty

(512) 442‑0522 fax

 

         Incitement is produced from the offices of Topeka Independent Living Resource Center (TILRC). Articles, letters, compositions, displays and photos are encouraged. Please contact Tessa Goupil for deadlines for submission of materials. The Editor reserves the right to edit or omit any material that is submitted. For more information, contact Tessa Goupil at TILRC or Stephanie Thomas at ADAPT.

 

Topeka Independent Living

Resource Center, Inc.

501 SW Jackson St., Suite 100

Topeka, KS 66603‑3300

(785) 233‑4572 v/tty

(785) 233‑1815 tty

(785) 233‑1561 fax

 

Neither Wind, nor Rain, nor Sleet...

         Unusual would be the watchword for the action in DC this “spring.” ADAPT moved the spring action to February 26th through March 2nd, in order to follow up with the National Governor’s Association, NGA, on the resolution supporting community services which was introduced in Seattle last summer. Icy temperatures, snow and rain were in the cards, but so be it!

 

CMS Director Doctor McClellan

Makes a House Call

         We began with a meeting with the Director of Medicaid and Medicare, Dr. Mark McClellan, who came to our hotel. First he met with a small group of representatives who talked with him about their experiences getting out of nursing homes and other institutional settings and about what it’s now like living free in the community. He said that getting Money Follows the Person (MFP) through was a high priority of his administration.

         From that smaller meeting, Dr. McClellan met with all of the ADAPT folks there for the action. He spoke about how we had definitely convinced him of the importance of ensuring that people have real choice to live in the community, and that was one of his goals. He also said that he understood the importance of the safety net provided by the federal side of the Medicaid program AND that he had no intention of block granting Medicaid. He talked about Money Follows the Person, both as a state initiative supported by CMS – and the national demonstration program bill that was introduced later in the week (S. 528).

         After speaking for a while, he took questions from the group. It was clear folks were very concerned about threats to long term care funding and block grants, etc. But while people remained wary of the proposed Medicaid cuts and the lurking threat of block granting, they were impressed by his straightforward approach and non-paternalistic attitude and respect for our desire for real choice. Notwithstanding his words, people felt the pressure is needed to hold the administration and Congress to their word.

 

Taking It to the Streets

         After our big meeting we lined up and headed off to our main focus of the action, the Governors. We marched through the chilly streets in the late afternoon light. Everyone was focused and determined that the NGA know our purpose. Literally hundreds of people with all types of disabilities from all over the nation were there to see that the NGA did the right thing. As we got about half way to their fancy hotel, the JW Marriott, NGA Executive Director Ray Scheppach, called on the phone: Could we meet? We said we would be right over.

         Scheppach and several of his staff came out to greet us in front of the hotel. ADAPT leaders and NGA staff held their meeting on the front steps of the hotel, while the other four hundred of us waited. As that meeting was taking place Governor Rendell, the sponsor of the resolution, called to say he was away at a meeting but would be coming back very soon and also wanted to meet with us. Scheppach and staff were telling our leadership that they were trying to get through as strong a resolution as possible. They thought what they had done was the strongest they could get through, and that they wanted our help on the Medicaid cuts.

 

Tapping into New Technology for the Direct Message

         Bumping up the tension a bit, people began to call the hotel and ask for their Governors. Several got through, and the Governor of Montana came out to meet with his constituents. The Governor of Michigan came out to look over the crowd with a concerned expression. In addition to our visit and our calls, people from all over the nation were faxing the Governors with the resolution that had originally been introduced, requesting they support the original version. Over 500 messages were faxed before the fax machines were shut down!

         Governor Rendell arrived and spoke with the group. He said that although the resolution had been watered down some in committee, he was going to keep working to make it as close to the original as possible.

 

Sunrise Start

         The next morning we were up and out on the street before the sun, a neat trick when hundreds of you are sharing the services of a limited number of attendants and a limited number of elevators. It was freezing cold and a huge snowstorm was predicted, but all were out and rolling with the crowd as we took off. The Governors were scheduled to go over to the White House for a meeting at 9:00 am, and we wanted to be there before they left. As we marched off in the streets of the Capitol, we were glad we had even beat the rush hour! To our surprise the police did not notice 400 of us had moved out until we were almost at the Governors’ hotel. Thanks to our early departure we even arrived before the snow started.

 

Blocking the JW

         Arriving at the hotel, two groups headed straight to the front doors and driveway while four others took the main intersection. The groups at the door blocked it solid and closed down the driveway so business as usual was far from usual. The other groups blocked the four streets and then wrapped the intersection in yellow caution tape. No one would be using that major intersection. Both of these actions had led to quick arrests in the past, but today the protest gods were watching – or so it seemed.

         Once in place our occupation began. We spotted the paratransit type vans that were to take the Governors to the White House and a commando group went to block their exit out the back way. We held them in for 45 minutes past their intended departure time and then suddenly a large group of Secret Service and other security types came out in a football Flying V formation. Descending on the folks blocking the back exit, they literally lifted power wheelchairs off the group like pole bearers carrying some rajah. Moving folks to the side, others block tackled those of us not in wheelchairs, and the Governors made a mad dash for the vans. The van drivers, once loaded up, gunned their engines and shot out over the curb and sidewalk. Steve Verriden said it looked like “popcorn Governors” inside as the vans whisked them away from the people and off to the White House meeting, which just happened to be on Medicaid reform.

 

Freezing Butts to Free Our People!

         Once the Governors were gone, we formed up again and marched off to the White House to continue our vigil. By now the snow was coming down and as we reached the White House a strange mist mingled with the snow. We lined up in front of the sacred fence at the 16th Street side of the building, and those who were willing to be arrested chained or handcuffed themselves to the fence. Hail bounced from the sidewalk as chants bounced back and forth among the group for the hours we held our position. It got colder and wetter as the hours passed. The weird “businessmen” wandered across the lawns with their oversized briefcases and pet German Shepherd dogs. Normally stopping at the fence is an arrest action, but not today. The cold and damp were penetrating, but people remained strong in their dedication. The Governors’ meeting was ending, and people wanted to be sure our statement was heard.

         Those who were willing to get arrested to show their commitment to having the Governors and the President make a stronger stand for freedom and Real Choice moved to the gates and chained themselves there. Touching the gates is a major offense. The police said that they were getting the paddy wagons, but another hour passed and they did nothing. We later learned there were orders from somewhere – no arrests.

 

Kick Off MiCASSA

         Our last day in DC was our time to visit legislators and remind them to sign on to the newly introduced Senate and House versions of MiCASSA (S. 401 and HR 910) and Money Follows the Person (S. 528).  Breaking into our groups again we went to every office in the Capitol to share our message.

         The Governors, who voted on the resolution that morning, had definitely heard us. However, in the end they passed a resolution that did move more toward the goals of the action and of ADAPT but left out important elements of the solution including any mention of the Olmstead decision. This battle is far from over, but state strategies will be essential.

 

Senator Harkin Pays a Visit

         Returning back in the evening, we had one more major event. One of our members, Skip Smith from Kansas ADAPT, had made a painting for Senator Harkin, who has been such a long time supporter of disability rights, MiCASSA, Money Follows the Person and more. We invited Senator Harkin to come and receive the painting, and he came to speak to us. He was eloquent in his dedication to disability rights, to freedom and justice for our people. He talked about the long hard struggle, and how now we must find the strength to renew our push for justice because of the many dangerous proposals being floated around the Capitol, proposals for Medicaid, Medicare, Social Security and more. These radical reforms might drive right over people with disabilities if we don’t recommit to the struggle.

         Spitfire presented the Senator with an ADAPT T-shirt and a set of the chains we had used at the White House the day before. Even as the ADAPT party that now culminates every ADAPT action began, the Senator was seen visiting with folks in the crowd.

         Highlighting this action were the many new people from new places who joined us, including several representatives from SABE (Self Advocates Becoming Empowered). Their energy and enthusiasm for the action was a delight to those of us who have been plugging away for some time now.

 

          With the federal government moving rapidly with its states rights agenda and turning services and supports back on the states alone, we must look toward home for our next steps. Each Governor, along with our state legislatures and state bureaucrats will be crafting their plans and budgets and our attention must focus with this now. What is happening in your state? What will you do to make the issues real in your area?

 

MiCASSA and

Money Follows the Person Introduced!

         MiCASSA (the Medicaid Community Attendant Services and Supports Act) and Money Follows the Person have been re-introduced and have new bill numbers. MiCASSA is now S 401 and HR 910. The main cosponsors remain Senators Harkin of IA and Specter of PA, and Representatives Danny Davis and Shimkus of IL.

         MiCASSA gives individuals who are eligible for institutional services like nursing home services and ICF-MR services equal access to community-based attendant services and supports. The services are based on functional need and are consumer controlled; in fact, they provide a choice of ways to have consumer control. MiCASSA also creates a demonstration project to evaluate service coordination and cost sharing approaches for those eligible for both Medicaid and Medicare. Also included are funding and direction to the states to reform their long term care to level the playing field and increase home and community based services.

         The Federal Money Follows the Person bill S 528 is co-sponsored by Senators Harkin and Gordon Smith of OR. This bill sets up demonstration programs in the states to allow people in nursing homes and other institutions to move into the community on existing community service programs, instead of having to go on long waiting lists, etc. However, this bill allows the funds that were paying for their institutional service to be moved over to pay for the services in the community. This bill also allows the participating states to get 100% federal funds to cover the first year of community services for those who move out, and at the end of the year the funding returns to that states regular match (60% federal funds – 40% state funds – or whatever the state’s regular match rate is.)

         We need more co-sponsors. Unfortunately, when a Congressional Session ends (every 2 years) all the bills that haven’t passed die and that is why they need to be reintroduced; also, all the co-sponsors need to sign back on again. If your Senators and/or Representative has signed on, thank them. If not, ask them to sign on again. To find out who is co-sponsoring the bill you can contact us at adapt@adapt.org (or 512/442-0252) or you can go to the Thomas website www.thomas.gov and type in the bill number.

         If you would like to get on the ADAPT update e-mail list for MiCASSA and related issues, here is a guide on how to get on it.

      Send an e-mail to: Majordomo@adapt.org

      Make the subject: subscribe micasa-list

      In the message itself, write: subscribe micasa-list

You must maintain an e-mail account at a stable address for receipt of e-mail. If you move your e-mail mailbox (change e-mail addresses) you will need to subscribe again to the list server. Addresses that do not work will be removed.

            Also our web page: http://www.adapt.org has MiCASSA information too.

 

If Not Now, When?

Join ADAPT in DC

September 17–21, 2005

         It appears that advancing political agendas in DC by knocking the disability community around has become an equal opportunity sport, with both major political parties taking their best shot. Even people who say they are our friends, or who we thought were our friends, are engaging in one action after another that threatens our freedom, risks our lives, and removes our civil rights. We will not let these actions go unopposed.

         The Republicans, while adopting an independence oriented vocabulary and philosophy, are slashing at the very safety nets that allow our independence and freedom. Their anti-government, states rights approach is a direct threat to many of our existences.

         The Democrats embrace many of our enemies (like the nursing home industry) taking their counsel and supporting their continued entitlement at our cost. The democrats’ love of paternalism and sticking to the status quo without question, have also set us back badly.

         Add this to the cuts of the Republicans and you know we have our work cut out for us. 

         People with disabilities of all ages are being threatened daily by actions taking place inside and outside the Washington, DC beltway. Medicaid is being “reformed,” but no one directly impacted by the program is included in the planning or implementing. Good ideas like MiCASSA and Money Follows the Person languish for lack of attention. Social Security is being dismantled and we must remind them that we make up a significant portion of those who are affected. Housing is being reformed right out from over our heads as the target groups become higher and higher income and the low income housing is used to pay for the changes.

            If you ever wondered why or if you should come to an ADAPT action, this is it! Join ADAPT in DC September 17 – 21. Let the disability voice be heard! For rooms call Tisha at 303/733-9324. For more information call 512/442-0252.

 

Talking and Walking at the Same Time

         ~Quote from Mark B. McClellan, CMS Administrator’s testimony to the

Subcommittee on Health of the House Committee on Energy and Commerce.

(All Medicaid issues go through this committee.)

         April 27, 2005

 

...“If we believe that every American - young and old - has the right to live in the community, if we have really learned that this can be achieved, the time is now to go farther down the ‘road to independence.’ It is time for action by Congress to give individuals the choice and control over their future that they deserve.”...

 

         Nice words, but...

We need to take Administrator McClellan’s words and challenge every

Republican in Congress to co-sponsor MiCASSA and Money Follows the Person.

We need to take Administrator McClellan’s words and challenge every

Democrat in Congress to co-sponsor MiCASSA and Money Follows the Person.

 

We don’t need block grants.

We don’t need caps.

We need an “End the Institutional Bias!

Send that message to your Senators and Representatives.

Challenge them to “End the Institutional Bias!

 

Why Now is the Time to Renew Our Push for

MiCASSA and Money Follows the Person

         Many people with significant disabilities cannot live without supports, like attendant services.

         Terri Schiavo’s story brought into focus, in an extreme way, the reality of this need. It pointed a huge spotlight on this issue. Though it has quieted down for now, this issue is simmering in the background.

         The visceral/gut reaction of many in the disability community to Terri’s story was a feeling of being deeply threatened. The fear comes from their current need for this support, or anticipation that they will need such supports in the future, combined with a sense that the general mood is to diminish just these types of supports. As one past leader of our nation has said: the cheapest way to serve is euthanasia.

         Many politicians who spoke in support for Terri’s life have not shown the same support for the services that would allow people with disabilities to live with dignity in their communities.

         Others who failed to see the importance of the value of Terri’s life, sometimes even life with a disability in general, have also not shown strong support for legislation supporting us in the community.

         The lack of understanding on both sides is chilling, to say the least. Congress is back in session but will be back in their home districts for July 4th and for the whole month of August. With Medicaid, Medicare and Social Security up for perhaps radical reform, we cannot just hope for the best. We must continue to push our agenda forward.

         Let’s make some good come from all this. Let’s get our Senators and Representatives to support disability by passing legislation. We need community attendant services and supports. If they support people with disabilities they need to support MiCASSA (S. 401 and HR 910) and Money Follows the Person (S. 528).

            Continue Your Advocacy by Contacting Your Senator and Representative.            FREE OUR PEOPLE!

 

MiCASSA - S 401  and HR 910

Money Follows the Person - S 528

 

Congressional Proposal for Basic Access in All New Federally Assisted Homes

         Rep. Jan Schakowsky (D-IL) has re-introduced the Inclusive Home Design Act (HR 2353), the national Visitability bill.

         Visitability is the most basic level of access. In this and most local and state bills there are three main requirements:

 

      at least one no-step entrance;

      doors and hallways wider than usual;

      and at least a half-bathroom on the   first floor big enough to accommodate a person in a wheelchair and allow that person to close the door.

 

         You can think of it like a stair step, with Visitability being the most basic, adaptability (as in the Fair Housing Standards for new multifamily housing) being the lower middle level, accessibility (as required by Section 504 and UFAS) being the upper middle level and individually customized access being the top level of access.

         According to Schakowsky 95% of federally supported homes are not required to meet any standard of accessibility. Yet, architecture and design experts estimate the total average cost per dwelling is $98 (on a concrete slab) and $573 (for a dwelling with a basement or crawl space). Several of the communities that already have Visitability laws have found it even less expensive than these estimates.

         The concept of Visitability has been catching on in pockets around the country for the past decade or so. The first place to require Visitability features in single-family housing paid for with public money was Atlanta in 1992, and was largely as a result of the efforts of the grassroots group Concrete Change. Other cities were quick to follow, including Austin, Chicago, Champaign, Urbana and Bolingbrook, IL and some states have even enacted Visitability laws Arizona, Vermont, Texas, Kansas, and Oregon.

         Visitability improves livability for homeowners as well as their guests. It lasts the lifetime of the house, so even if the first occupants don’t need it, it is there for future residents and guests. It supports lifetime living, so as people age and their needs change the house can change with them. It promotes integration through visiting. It makes housing safer as everyone can get in and out. It allows people who develop a disability to continue to enjoy basic access to their homes. In short, it really improves housing.

            Schakowsky’s bill has been referred to the House Committee on Veterans Affairs’ Subcommittee on Benefits. Supports of the bill want more co-sponsors. For more information on this and other Visitability initiatives check out Concrete Change’s website www.concretechange.org .

 

Medicare Wheelchair Rules

Still Keep Us Homebound

         When the Centers for Medicare and Medicaid Services (CMS) rewrote the rules for power wheelchairs they did adopt a functionally based criteria for assessing people’s needs for mobility equipment. According to CMS, the new criteria, which are effective

immediately, adopt a function-based determination of medical necessity. This determination looks at the ability of the beneficiary to safely accomplish mobility-related activities of daily living, such as toileting, grooming, and eating, with and without the use of mobility equipment — from simple canes and walkers to sophisticated power wheelchairs. Their idea is to make the process more straightforward.

         However, on the downside, the new criteria still do not get rid of the homebound requirement that is the source of much stress for many Medicare recipients. Many people must live a lie to get the supports they cannot live without, having to claim they are homebound, or not get a wheelchair or similar essential device. The bizarre reality is that without the chair they are homebound, perhaps “bed-bound”, but with it they could help take care of daily living activities and become functional members of their community.

CMS took the first important steps and then dropped the ball. 

         More information about the CMS rules can be found at the following website:  www.cms.hhs.gov/coverage under mobility assistive equipment (MAE).

 

The ADAPT Community Vision 2005

         ADAPT is the largest national grassroots activist organization in the country. This has come about because of the tireless commitment of thousands of activists who believe that taking aggressive non-violent direct action is a critical piece of bringing about lasting social change. The involvement of people directly affected by the issues is vital to keeping the message real.

         To continue this vision into 2005 and through the next decade will require a renewed commitment from those of us that have been in the trenches for years, But More Importantly will be our efforts to develop the grassroots ADAPT leadership that will continue the battles for the rights and services we need to live independently in the community.

         Specifically we will work to: 

 

1.   Continue the advocacy to get MiCASSA and Money Follows the Person passed;

 

2.  Assure Medicaid is not block granted so we won’t lose national protections that result in waiting lists at the state level;

 

3.  Implement the Olmstead decision at the state level to assure that no person is forced into or remains in a nursing home or other institution because of the lack of community attendant services;

 

4.  Continue our advocacy for Accessible, Affordable, and Integrated Housing.

 

         ADAPT will work with other groups to protect the rights guaranteed in the Americans with Disabilities Act (ADA) and the benefits afforded by the Social Security Act.

            Our philosophy is simple:  Don’t Mourn...ORGANIZE!   FREE OUR PEOPLE!

 

Around the Nation…

Social Insecurity

By Gordie Haug

            Fargo, ND — ADAPT of Minnesota, Options and Freedom Resource Centers for Independent Living along with SAS (Self-Advocacy Supports) group and other disability organizations and individuals from eastern North Dakota and western Minnesota, held a protest rally in Fargo, on February 3rd. President Bush was in Fargo to enlist support for his privatization plan for social security. The protesters were in Fargo to protest the privatization of Social Security due the potential impact on their benefits.

            Their message was “There Are More Than ‘Retirees’ Who Receive Social Security Benefits. Disability advocates asked the administration for a Benefit Impact Statement regarding how the various proposals will affect persons with disabilities. No change without analysis. Know the facts before one makes changes. What the President and the Administration has failed to recognize is the impact on the 11 million Americans who receive Social Security Disability Insurance (SSDI) or the federally funded Supplemental Security Income (SSI). There are others who are dual-eligibles and those who receive Social Security Survivors Insurance benefits based upon parental earnings who will also be impacted.  How these programs will be affected by current proposals has not been addressed or answered.”

 

We Will Ride

Indiana ADAPTers

            Indiana – Since the mid 1980s Indiana ADAPT, Everybody Counts and other disability rights advocates have been pushing for better transit for people with disabilities. They had filed a lawsuit against the Indiana Department of Transportation, the Northwestern Indiana Regional Planning Commission and a group of local transportation providers. However, this suit had gotten bogged down in the states rights battle. In March their case went to US District Court for the arguments that they should be allowed to sue the state. Over 40 advocates from numerous groups gathered for the Court proceedings, and held a press conference to clarify their concerns for the public.

            Using a tactic that many states have tried with mixed success, the attorney for INDOT, Thomas Fisher, argued that the state organization was protected from lawsuits through ‘sovereign immunity’ and wrapped Indiana in the 11th Amendment, which protects states in some cases from being liable. “There’s no history of irrational discrimination here” Fisher told the judge. But the folks with disabilities were there to bear witness that many would disagree with that assessment.

 

We Will Ride Alabama

By Trecia Benefield

            In April the Center for Independent Living in Jasper Alabama developed a strategy for participation in a hearing to fund transportation in Alabama (HB235.)  Our whole office made what we call “Round Tuitts” from playdough with many different colors and sizes. They are round discs with a picture of a bus and Tuitt written on the bottom (hence Round Tuitt). The idea was to catch the attention of our House Finance committee. 

            When my turn came I told the committee members “every time I talk about the need for funding for Public Transportation the answer usually is ‘we will get around to it.’  So I thought that I would get you a round tuitt. And get that over with.” We passed a box around decorated in red white and blue stars filled with the Tuitts and explained the colors and shapes represented the many different needs for Public Transportation in the Alabama. Each member of the committee selected his or her own Tuitt (a few were quite picky in their choice). I ended by telling the committee that Alabama was one of 7 states that do not fund Public Transportation.

            As they were picking out their Round Tuitts, the whole mood of the committee members changed from formal to easy going, actually laughing and joking with me. For 10 years we the disability community have been trying to get public transportation bills in and out of committee and on to the floor for a vote. The Finance committee voted and HB235 passed out of committee and forwarded on to the House for a vote.

 

Governor Rendell – Friend or Foe?

 By Cassie James Holdsworth

            Hey, these are confusing times, even for us activists! At the winter ADAPT Action, Governor Rendell who was attending the National Governor’s Association conference came out from his  hotel in Washington to assure 400 ADAPT activists that he meant business in creating an even playing field for a community first approach to long-term care and support services. Boldly, Governor Rendell seemed to be the only governor ready and willing to say ADAPT’s community-based long term care policies are the right thing to do. If people were given a true choice, they would want to remain in their own homes with long-term care services, rather than go into expensive nursing homes. He claimed to believe in the U.S. Supreme Court’s decision in Olmstead which protects our rights under the ADA to live in the least restrictive environment with appropriate services. Well that’s his national stand on long-term care which is great and the correct way to go.

            However, in his home state of Pennsylvania, Governor Rendell has worked to get the nursing homes more money. He has also proposed in this year’s State budget to place caps and restrictions on Medicaid that will harm people with mental health issues, the disabled, the elderly, and any poor person who develops an acute condition or suffers a medical emergency. Granted his rationale is he does not want to cut anyone off Medical Assistance, but what good is that so-called safety net if it rations care to the elderly, disabled, and poor who have complicated medical needs? Are we becoming a society that would rather go to a financially draining war than care for its own people? The Federal Government is cutting housing programs, messing with social security, and dismantling Medicaid. Are we becoming a country committing atrocities against our own people?

            I still believe that people should stand up for what’s right in hard times – politicians as well as everyday people. Let’s show we have the guts to raise taxes to maintain Medicaid coverage. The poor can’t be the ones who always carry the weight of hard times. Let us be a united and diverse America that knows the American Dream, including basic health care is for every American, not just the privileged few. 

            ADAPT of PA visited Governor’s Rendell’s office on April 12, 2005, and he agreed to meet with us in Philadelphia on April 14th. Even in these hard times we have power at least to get a meeting. In the meeting the administration requested a list of ten things we’d like restored in the Medical Assistance budget. We never gave them the list because we want to protect the total community of disabled and poor people. We will not betray anyone in our troops! We met with the Governor to get rid of all caps and restrictions. We want Medicaid restored to meet the basic health care needs of its recipients. These are hard times, but we are winning in the community-based services and supports arena. We know that people with disabilities need more medical treatments to stay well and we are hoping that we do not end up back in nursing homes and other institutions for basic health needs. We also know as taxpayers that incarcerating people with disabilities in nursing homes is more expensive than cheaper community-based long term care with basic Medicaid health coverage. Some of us are still asking the question – is Rendell friend or foe? We will see how it all shakes out in the war to restore Medicaid in Pennsylvania. 

 

American Disabled for Accessible Public Toilets?

Restroom Access the Issue at Maryland ADAPT ADA Action

By Crosby King

            The night of Saturday December 11, eleven Maryland ADAPTers took on the historic Senator Theatre, one of Baltimore’s most beloved institutions.

            We don’t like it so much. The bathroom stalls are too narrow for wheelchair access, so disabled folks don’t go to the movies there. The Senator has had many complaints — just found out they are being sued — but this is the first time they’ve faced direct action.

            We had great posters and chants (“Potty Parity!”), but our centerpiece was Linda Merkle, a NH escapee who was sitting on a potty chair reading the Baltimore Sun. The headline read “NO RELIEF AT THE SENATOR THEATRE.” We got coverage from the local Fox station and the Sun. We partied afterwards, of course. They haven’t heard the end of us.

 

Rochester ADAPT Rocks the Presidential Visit

By Chris Hilderbrant

            On the cold, wet morning of May 24, 2005, thirty-seven Rochester ADAPT members, joined by Syracuse ADAPT and Binghamton ADAPT, met in Greece, NY to “welcome” President Bush, who was in town to push his plans for privatizing the social security program.

            Although Social Security was on the President’s mind, ADAPT wanted him to know what was on our mind. Bush’s cuts in funding for HUD and his push for cuts and caps on Medicaid will force people out of their homes and into institutions - not acceptable! 

            After gathering at McDonald’s (what would an ADAPT action be without McDonald’s?!), we marched down to the school where he was speaking. Eventually, we were able to position ourselves along the curbs directly across the street from the school where he was to speak, taking over both corners of an intersection. Traffic continued to flow through, and we were very clearly visible to anyone traveling past the school.

            As signs were passed out to everyone the chanting began.... “No more Medicaid cuts”, “Housing cuts = Nowhere left to live!” and “Our Homes, Not Nursing Homes”. The rain drizzled down and we kept our voices and spirits up. We had many first time ADAPTers on hand. Some members wore heart-shaped pins with the message “If you can read this you must be a sharpshooter”- a little comedy for the men in trees and on the buildings. 

            Because Bush’s domestic agenda basically amounts to Medicaid cuts, housing cuts and Social Security cuts - we had designed two large foam core scissors that read “The Only Tool in Bush’s Belt”.  Norita Darling stood on one corner cutting away at Anthony Griggs while Teresa VanGrol wielded her giant scissors on the other corner.  Media from Rochester, Buffalo and Syracuse came to record Bush’s visit, speech and the protests. Every one also made sure they got a picture or footage of the giant scissors.

            Among the many protestors there that day, our group was the loudest and most cohesive. Our chanting was powerful enough that other groups approached us to negotiate which chants could be done by the entire crowd of people with a variety of agendas. Chants of “Money for health care, not for warfare” and “People are dying, shame on Bush” unified the entire crowd of protestors.

            Throughout the morning, we got word from people in the press about the movements of the President. Finally the motorcade arrived and, in a blink of an eye, zipped into the school. We had plenty of time to wait while the President made his speech. 

            Two anti-war protestors walked politely across the street and toward the school and were met promptly by police officers. One kneeled to the ground while the officers tried to figure out how to deal with peaceful resistance. During this exchange, our ADAPT group furiously rethought our plans to NOT get arrested this day. Despite all the many reasons we had to not get arrested on this day, watching the two protestors be arrested created a serious fire inside us to be handcuffed and taken away. But calmer thoughts prevailed and the crowd fired up loud chants in support of the two arrestees.

            After about an hour, the police began to spread out and we knew the President was preparing to leave. The motorcade zipped out of the school almost as fast as it arrived and Bush was off to the airport to return to DC. 

            We marched together, along the street, back to the McDonald’s for our debriefing meeting. Rallying in the parking lot, we reviewed the day’s accomplishments: it was a great action because we got more of our message out to the public and the media, and also because we were joined by many new ADAPTers and ADAPTers from Syracuse and Binghamton. Our debriefing meeting drew more than a few curious eyes as we taught them all how to spell power: A - D - A - P - T!!

 

Georgians Take the Long Road Home II

(Excerpted from longer piece by Zen Garcia)

            Georgia disability advocates are holding the Long Road Home II campaign, a five day rally from June 19, to June 22, 2005, as we march across Georgia. The point is to promote support and public awareness for MiCASSA (S. 401, HR 910) - the Medicaid Community Attendant Services and Support Act and MFP (S. 528) - the Money Follows the Person Act. MiCASSA establishes a national program of community attendant services and supports for people with disabilities, regardless of age or disability. MFP would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled or currently in a nursing home or other institutional services would have the choice where and how these services are provided. MFP authorizes the Secretary of Health and Human Services to provide grants to States to conduct demonstration projects that are designed to enable Medicaid-eligible individuals support for appropriate and necessary long-term services in the settings of their choice, often at a cost much cheaper than the annual cost of warehousing individuals in nursing homes or institutions.

            Government should reflect the wishes of the people, and the wishes of the people are to live in their/our own homes. We are guaranteed equal stature and protection by the very documents our country was founded upon. We cannot allow the very institutions put into place to protect citizens, to devalue and dehumanize a certain part of the populace. We want our governor and all governors to expedite their Olmstead mandates and help move people out of the institution and back into the community. We want the Waiting Lists for community supports to be unlocked - many for years have been waiting for assistance. Join Georgia advocates informing people of these important issues affecting us all. It may just save the quality of your life one day. Help us to help you.

 

Georgians Hold MiCASSA & Money Follows the Person Forums

By Samuel Mitchell

            Hello Fellow Advocates. Atlanta ADAPT will do statewide forums on MiCASSA and Money Follows the Person. I have run into so many people who either don’t know or have the wrong idea about what it is and what it does. There is a desperate need for widespread knowledge of such an important piece of legislation to the disability community and the community at large. With so many people with disabilities and elderly wanting to live in the community and choosing to do so when given the chance there must be a viable support structure with adequate funding set up or we are courting disaster. MiCASSA helps provides this funding and the blueprint and initiatives for the support structure. We are contacting other groups and individuals to join with us in spreading the word and supporting this legislation. Why not try it in your state?

 

Laguna Honda Bungles On

By the ADAPT LHH Fan-Club

            The stories keep seeping in, even years later. Financial shortfalls threaten the Laguna Honda Hospital replacement project and the City of San Francisco had more hearings on the problem in March.

            According to the San Francisco Chronicle: Supervisor Elsbernd told the Board of Supervisors in March “We are $84 million short.”

            The Chronicle story reported: “Voters six years ago approved a $299 million project for 1,200 beds near the site of the existing, aging long-term care hospital in Elsbernd’s district. But since then, the costs have shot up way beyond what The City’s tobacco-settlement money dedicated to the mega project can cover and talk of postponing part of the project or scaling it back by hundreds of beds has drawn fierce opposition from some labor and community groups.

            Now, City Controller Ed Harrington has been asked to take a look at options, with recommendations due in the next 30 days, according to Elsbernd. He maintains that there is no “done deal” as to how the problem will be solved.

            Mayor Gavin Newsom, with whom Elsbernd is working on the issue, said earlier Tuesday that The City “didn’t do its homework” on this and other major capital projects such as the new Jail No. 3 in San Bruno, whose budgets have ballooned along the way.

            Sadly the cradle of independent living continues to clutch at this travesty.  Back in 2001 ADAPT went to San Francisco asking these questions:

            Imagine living in a 1200 bed nursing facility, over half those beds in wards with 30 people in the same room.  

            Imagine being told that they will be tearing the building down - ONLY to be told they are going to rebuild it.

            Imagine the wealthiest areas in the country being willing to spend almost $300 per day to keep ONE person in this warehouse of “caring” (over $130 million per year for these 1,200 people) but fighting over implementing people’s right to live and receive services at less than half that cost in the community. 

            Imagine that community not even bothering to apply for all the housing subsidies available that could give some of these individuals a choice to live in the community.

            Imagine EVERY progressive politician, union, church group and others supporting a $299 million bond package to assist in the rebuilding. With interest, this bond package will end up costing over $600 million. And the city and state are putting in even more money, beyond financing the bond package!

            Imagine EVERY disability group in the area being opposed to that bond package BUT being ignored by these same politicians, unions, church groups and the voting public.

            Unfortunately this is not just a bad dream. It is the reality of what is today going on in San Francisco, California. Laguna Honda, “The World’s Largest Nursing Facility”, will be rebuilt with hundreds of millions of public dollars and will then have to continue to house over a thousand people with disabilities. 

            California is in terrible fiscal crisis, threatening slashing cuts in community services at every turn. The US Department of Justice has found them in violation of ADA and other federal civil rights laws, and yet they continue to pour money down this rat hole. But apparently even the Terminator ignores this fiasco.

   

The Riot! is Born!

By Jaime Johnston

            The Self-Advocate Leadership Network at the Human Services Research Institute announces the arrival of The Riot! an e-newsletter for self-advocates. Written by HSRI staff with guidance from our Editor, Teresa Moore, a self-advocate from Arizona, it has contributions from a committee of self-advocates from Alabama, California, Idaho, New Hampshire, New York, Oregon, Oklahoma, Texas, and Utah.

            The Riot!, is published on-line every July, October, January, and April. The newsletter features regular articles from Chester Finn of SABE (Self-Advocates Becoming Empowered). Our horoscope forecasts love, romance advice from Cubby.  Craig travels the country gathering irksome material to generate discussion! Every issue provides useful information and explores issues that are important to self-advocates like: self-determination, accessibility, living in the community, relationships, and the powers that be. Our readers are additionally delighted by Jazmyne Johnston’s satirical cartoons.   

            Visit our website, www.hsri.org/leaders/theriot click on “subscribe,” and enter an e-mail address. Once subscribed, readers receive quarterly e-mail notices with an invitation to read the latest issue of The Riot! by following links to our website. The Riot! can be downloaded in PDF (requires Adobe Acrobat) and text file formats.

 

Ruthie Beckwith writes:

         This evening I had the honor of being one of three poets who took part in a reading of works written by people involved in the self-advocacy movement at the Birmingham Civil Rights Institute. An an awesome exhibit on the history of the disability rights movement is there until April 24th.

         One of the poets, Gail Bottoms, who is the past president of People First of Georgia, read the following poem from her recently published collection called “From the Inside Out” after she had been to the legislature to talk about Georgia’s lack of progress on responding to Olmstead. She gave me permission to share this with you.

 

My Alligator

 

My alligator got away yesterday,

Just got out of his pen and slipped away.

The last time I spotted him, he was

Going toward Atlanta uptown,

I ran behind him, I ran up and down.

The last time I saw, he was on the capitol steps,

With people jumping with screams and yelps.

Up the steps and in the door, I couldn't see him anymore,

So I went back home and closed my door.

 

He ate all the nursing home lobbyists on the fourth floor,

Then he went searching for more.

 

A little later I heard something outside,

I looked out and there laid Clyde.

I ran to him and stood by his side,

 

He was so full of money; he laid down and died.

 

(c) Gail Bottoms, 2004

Poet

Passages

Tony Cordoba

         Long term ADAPT warrior, Tony Cordoba has passed, Formerly active in GA ADAPT and then CO ADAPT, he died of a heart attack February 7th 2005. Tony struggled with the many issues related to attendant services and life with a disability, and with multiple health issues, but was a deep believer in the goal of freeing our people! Tony will be missed.

 

Nancy Moulton

         Though she had not been to a national action in a while, long time ADAPTers will remember Nancy Moulton and the passion she brought to the disability rights issues and movement. She will be missed.

         Nancy Moulton, a longtime activist in Atlanta ADAPT and founder of Life Worthy of Life (an early organization with goals similar to NDY), died  September 25th 2004. Nancy was one of a dozen advocates who came to “The Schoolhouse Summit” on assisted suicide and euthanasia in Tennessee in 1992, before Not Dead Yet. She lead Life Worthy of Life, and served as the disability community representative to the Board of the National Legal Center for the Medically Dependent & Disabled during the early ‘90s. Her involvement always spoke with the power of personal experience.

         Her husband Larry has kept a detailed blog of his and Nancy’s fight to preserve her life from doctors and “ethicists” asking Larry if she would really want to “live this way.” It’s at http://larryfeltonjohnson.typepad.com/nancy_moulton/

         ~Diane Coleman & Eleanor Smith

 

Alfredo Juarez

         Alfredo Juarez has passed on. Alfredo had not been well for many years but he kept with us, kept with the fight and in the end liver cancer took him quickly.

         A master organizer with Desert ADAPT, Alfredo spent a lifetime working on disability rights, luckily for us for the past many, many years with ADAPT.

         His quiet but deep passion burned within and sparked many of us to do more, to do better. His creativity gave a flair to our stuff, just one example: when “Mr. Curb Cuts”, a skeleton in a wheelchair (based on the UT ADAPT figure) went to testify at El Paso City Council with Desert ADAPT. Alfredo cannot be replaced, but he will remain within us.

 

Mark Jacobs

         Mark Jacobs, a member of Philly ADAPT, passed away March 3rd, 2005.

         Mark had been in a Philadelphia Nursing Home for 22 years before coming out in 1995. He had called the nursing home a “subliminal seduction” as they had told him for a long time that he would never be able to live outside of a nursing home and that freedom was not a possibility. Finally, after meeting ADAPT Members inside Philadelphia Nursing Home over the Christmas Holidays; he became convinced that he could live on his own.

         Since moving out of the nursing home, Mark had inspired and helped his sisters and brothers as a Community Advocate. He got them to see that not only was it possible to live in the community, it was wonderful. “I eat when I want to, my own food. I can have a beer without permission. It is good to just be able to get out, travel and participate with ADAPT and other disabled people.”

         Mark died after complications of a heart attack while on the Winter ADAPT Action in Washington, DC. He had been very excited about going to the action and seeing everyone. He considered ADAPT his family. “People should just have a choice to be able to live in the community; years ago, there was no choice.” he had said about the need for MiCASSA.

         A man of few words most of the time, he was there when and where he was needed to free our people, and he will be greatly missed.

 

Leonard Roscoe

         Leonard Roscoe, 35 of Atlanta died March 6, 2005 in a Washington DC hospital. He’d finally been able to come back to an ADAPT action after many health issues. Leonard was not quite three feet tall, and he was a giant. Born with Osteogenesis Imperfecta (OI), a severe condition resulting in brittle bones, he was sent to Brook Run, a state institution, and remained there for 25 years. In 1995, he was able to get the support and services he needed to live outside the institution. This year was his 10-year anniversary living free.

         In addition to ADAPT, Leonard was a leader in People First of Georgia, and in Disability Link of the Institute on Human Development and Disability at the University of GA. He founded the Osteogenesis Imperfeta Council of GA. Because of his deep commitment to his brothers and sisters with severe disabilities, he served on the Brook Run Transition Committee, when that institution was being closed.

         The loves of Leonard’s life were his family and his music. He and Renee adopted a son, Nigel who also has OI, and of whom he was very proud. We will miss his passion, his humor and his unique energy.

 

Happy News!

         Maitri Campbell of Delaware ADAPT is free!  She moved out of the nursing home and held a housewarming open house Saturday, June 4th.

 

Wedding Bells!

            GA ADAPT’s Samuel Mitchell and Cheri Johnson got married in February. They were going to announce this at the People First Dance and Buffet but word got out early. Their honeymoon? The DC ADAPT action. Talk about a union in the movement!

 

BE A PART OF THE ADAPT COMMUNITY

 

ADAPT NEEDS YOUR HELP!!

 

Incitement costs $15,000 to produce and mail out.

In order for us to be able to continue to send you

Incitement we are asking you to donate to its costs and to the campaign to Free Our People!

 

  $10 would cover the costs to send you Incitement for a year.

  $20 would cover the costs for yourself and someone who can’t afford it.

  More than $20 would mean that you would be directly contributing to the grass roots campaign to get our people out of institutions.

 

Please support ADAPT and send your donations NOW!

 

Ways to donate:

 

  The easiest way for many is to go to our web page www.adapt.org and use the donate button with a credit or debit card.

  Alternatively you can send cash or a check made payable to: ADAPT/Incitement

     1339 Lamar SQ DR #101

     Austin, TX 78704

 

All donations are tax deductible.

 

Thanks for your continued support.

 

Join ADAPT in DC

September 17–21, 2005

(See story page inside)