Incitement

Volume 20 No. 2              A Publication of ADAPT              Spring 2004

 

ADAPT/Incitement

1339 Lamar SQ DR #101

Austin TX 78704

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            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

 

No More Stolen Lives!

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 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 Medicaid, 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 sidewalk, which was a good thing,” explained Linda Anthony. “With everyone facing the White House, we listened as person after person told how their lives had been stolen and how they came to be with us. I don’t know about anyone 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!”

 

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, unaware 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 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 had 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 freedom.” 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. “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.]

 

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 Person. 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.

 

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 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 Hilderbrant, Bob Liston and Tim Wheat for their contributions included in this article. For more details and pictures visit the ADAPT website www.adapt.org]

 

Average Annual Cost of

Nursing Home Care

State by State - 2003

 

            According to a 2003 GE Financial survey of more than 2000 nursing homes, the average nursing home cost was $57,700 per person.

            The highest was Alaska at $166,700 and the lowest was Louisiana at $35,900.

            Costs in or near large metropolitan areas, such as New York City or San Francisco, will be much higher than the state average.

 

Alabama - $46,600

 

Alaska - $166,700

 

Arizona - $58,600

 

Arkansas - $39,300

 

California - $59,900

 

Colorado - $52,500

 

Connecticut - $97,400

 

Delaware - $59,100

 

DC - $82,800

 

Florida - $60,400

 

Georgia - $43,200

 

Hawaii - $84,700

 

Idaho - $54,000

 

Illinois - $54,100

 

Indiana - $54,700

 

Iowa - $42,000

 

Kansas - $41,100

 

Kentucky - $51,100

 

Louisiana - $35,900

 

Maine - $72,800

 

Maryland - $64,300

 

Massachusetts - $87,500

 

Michigan - $62,000

 

Minnesota - $56,700

 

Mississippi - $43,800

 

Missouri - $42,100

 

Montana - $46,400

 

Nebraska - $49,400

 

Nevada - $55,100

 

New Hampshire - $72,500

 

New Jersey - $80,100

 

New Mexico - $53,200

 

New York - $92,100

 

North Carolina - $50,300

 

North Dakota - $71,300

 

Ohio - $55,900

 

Oklahoma - $40,700

 

Oregon - $52,600

 

Pennsylvania - $66,100

 

Rhode Island - $69,300

 

South Carolina - $46,800

 

South Dakota - $43,400

 

Tennessee - $45,800

 

Texas - $43,200

 

Utah - $47,900

 

Vermont - $68,200

 

Virginia - $50,200

 

Washington - $62,700

 

West Virginia - $50,900

 

Wisconsin - $56,200

 

Wyoming - $51,400

 

Information taken from Kiplinger’s Retirement Report - March 2004.

Compiled by The ADAPT Community.

www.adapt.org

adapt@adapt.org

(512) 442-0252

 

Stay Informed with ADAPT

            Incitement comes but a few times a year. Would you like more timely news on ADAPT, MiCASSA, Money Following the Person and Freeing Our People? ADAPT has an e-mail list which has more frequent information on these and related topics.

Subscribe to the ADAPT E-Mail List!

            It’s easy! If you would like to get on the ADAPT update list for MiCASSA and related issues, here’s how. Send an E-Mail from your preferred E-Mail mailbox in the following manner:

            Heading:

            To: Majordomo@adapt.org

            Subject: subscribe micasa-list

            Body of the message:

                        subscribe micasa-list end

            You MUST maintain an E-Mail account at a stable address for receipt of E-Mail. You’ll need to subscribe again to the list server if you move your E-Mail mailbox. Addresses that do not work will be removed. If you have problems please let me know at adapt@adapt.org

            There’s also lots of good info on the ADAPT website www.adapt.org. Resources, updates, photos, back issues of Incitement and much more.

            And last but not least, if you want to get on our ADAPT newsletter mailing list and aren’t on there already, send me your name, snail mail address & phone.

 

            Thanks, Stephanie

 

ADAPT’s Summer Action

States Hold the Key

NGA Meets in Seattle

          With an ever-increasing push against Federalism and toward states rights, we must look to the states for at least part of the solution to Freeing Our People.

          Ironically, states are more and more in fiscal straights and Medicaid is a big part of their budgets. Medicaid reform is looming large on the horizon.

          State by state we are seeing threats and big cuts in community services while the institutional services cruise along!

          Even if we got what we wanted tomorrow, States would be the ones to implement it.

          States are making token efforts to comply with Olmstead, yet compared to what could have been done, few have been freed.

          In July the National Governor’s Association (NGA) will meet in Seattle. ADAPT will be there. You need to be there too!

          Governors are already convening discussions on long term care. Governor Kempthorne of Idaho, Chair of the NGA, is prominent in many of these discussions. Long before the Governors or other national leadership were talking about long-term care, ADAPT and other disability groups were pointing to solutions. Yet for all of the national leadership’s plans and discussions, consumers - people with disabilities - are not included. In fact, for almost a decade ADAPT’s requests to meet with the NGA on this issue have been ignored.

          Time for action is NOW! Join us in Seattle in July!

               

Get Ready, Get Set!

          Our Fall action is really a Summer action this year. Seattle is Just Around the Corner!!! July 16th-21st (Friday to Wednesday)

          ADAPT will be headed to Seattle to petition the Governors of our fair states for truth, justice and the American dream for people with disabilities incarcerated in nursing homes and other institutions.

          As the “States Rights” approach to government grows more and more powerful, Governor’s play a bigger and bigger role.

ADAPT will be there to Free Our People.

 

Court Supports Disability Rights

of Laguna Honda Residents

            A kind of Christmas present for the disability community, in December a preliminary settlement of the Laguna Honda class-action lawsuit (Davis et al. v. California Health and Human Services Agency et al.) against the city of San Francisco and several state agencies.

            In the settlement, San Francisco agreed to evaluate, on an ongoing basis and using a new evaluation tool, patients living or being sent to the city-owned Laguna Honda facility.

            Misnamed a hospital and rehabilitation center, Laguna Honda, in fact had become a kind of holding pen for thousands of people with disabilities on Medicaid. Never mind Stephen King, people who had gone for allegedly short-term stays and eight, ten years later, were still there with no departure in sight. Thirty bed wards were the only option for most inmates. People who were simply blind; people whose parents (with whom they had lived) had become disabled and been sent there were sent along too, and when the parent died the “child” was kept; people whose discharge plan read it was time for community placement yet five or more years later no action had been taken. You like tragedy? Read the Department of Justice findings or the court documents of this case!

            The agreement could affect about 1,000 current Laguna Honda residents, about 10,000 current state patients and any future patients, Kim Swain, an attorney with Protection and Advocacy Inc. told the San Francisco Chronicle.

            The court is scheduled rule on final approval of the agreement in July 2004.

            The plaintiffs have the option to refile the portion of the case that seeks the actual provision of community services to people at SFGH and LHH after the new community-based assessment program is established and has been operating for six months. The need for community-based services and the capacity of San Francisco to provide such services will be determined based on the new assessment process.

            According to the Chronicle, The U.S. Department of Justice’s civil rights division investigation strengthened the lawsuit. DOJ found that indeed San Francisco was violating people’s civil rights by packing them off to Laguna Honda, rather than giving them services in the most integrated setting. Katia Hetter of the Chronicle reported on December 24: “In a 30-page letter sent in April to Herrera, the Justice Department concluded that the city’s voter-approved plans for completely rebuilding Laguna Honda for $401 million were misguided, and it threatened a lawsuit ‘to correct deficiencies’ at Laguna Honda. In 1999, voters approved a $299 million bond to help pay for the project. Tobacco funds provided an additional $100 million.”

            Yet City officials told the Chronicle their plans remained the same. Construction is slated to start this summer and end in 2009. Ominously, Aleeta Van Runkle, the city attorney’s chief of neighborhood and community services told the Chronicle “I think those needs (for Laguna Honda’s services) will continue to exist.”

            In light of the draconian cuts Californians are facing, one has to wonder what San Francisco officials are thinking.

Is Soylent Green next?

 

Presidential Candidate Responses to ADAPT Survey

 

          In the fall of 2003, ADAPT asked the Candidates for President from both parties to respond to a survey on their positions related to Real Choice, Freeing Our People and related issues.

          Despite repeated mailings, e-mails and phone calls we received no response from President Bush. His campaign staff said they might respond in March, but they never did. Below are the responses of Senator Kerry.

 

1. Do you support the passage and full implementation of the Medicaid Community Attendant Services and Supports Act, MiCASSA?

 

w Kerry: Yes, Americans with Disabilities must be assured equal access to quality home and community living services. I am an original cosponsor of MiCASSA and the Money Follows the Person Act. Passage of both of these bills is vital to ending the institutional bias that makes it impossible for millions of Americans to exercise the most basic of human liberties: freedom, choice, and independence. I support increasing funding for independent living centers, areas agencies on aging and similar local organizations to build capacity and support people with disabilities in moving out of or keeping from needlessly going into a nursing home or another institution. I will work to provide decent wages and benefits to the community based services workers who help make independence possible.

 

2. Do you support the passage of legislation that will implement the concept of Money Follows the Person that is included in S.1394?

 

w Kerry: Yes, see #1.

 

3. Will you work with the states to assure they implement the Supreme Court’s Olmstead decision so all people with disabilities, old and young, have the right to support services in the most integrated setting?

 

w Kerry: Yes.

 

3a. What specific actions would you take?

 

w Kerry: We must fully implement the Olmstead decision. I believe that states must be given increased resources and tools to carry out the Olmstead decision and must be held accountable for doing so. As with racial segregation, we must put an end to the institutional bias that prevents millions of Americans of all ages from living fuller lives in their own homes and communities. States are experiencing tough fiscal times and many are slashing Medicaid funding for home and community based services. The Bush Administration has done nothing to stop this from happening. I am committed to finding ways to relieve these pressures on states and make certain that people with disabilities and older Americans receive the support they need to live in their own homes and communities.

            However, unless we make it a top priority to help alleviate the financial burdens that the states presently face, which are restricting their abilities to implement the Olmstead decision, we won’t be giving the states and Congress all the tools they need to end the institutional bias. That’s why I have proposed a $40 billion dollar state and local tax refund. By helping states’ financial outlook we can more effectively empower them to collaborate in partnership with the federal government in implementing the Olmstead decision.

            Moreover, we cannot implement the Olmstead decision and increase home and community-based services unless there is an adequate supply of housing. Presently, there is a severe shortage of housing that is safe, accessible, and affordable for people with disabilities. Improving our housing infrastructure includes increasing support for the Section 8 voucher program to broaden access for non-elderly persons with disabilities, as well as Section 811 for people with severe disabilities; increasing production of affordable housing; and providing incentives for the builders to adopt visitability in their design and construction.

 

4. Will you appoint a Secretary of Health and Human Services that will have a Community First philosophy and will review all Medicare and Medicaid policies with the intention of removing all policies that contribute to the institutional bias that exists in the current long term care system?

 

w Kerry: Yes, my Secretary of Health and Human Services will have a Community First philosophy. There is an institutional bias that must be reversed to ensure that Americans with disabilities of every age have the services and supports to live in the community of their choice. To do this, I will appoint a national bipartisan Community First Commission made up of Members of Congress, Governors, distinguished older Americans, veterans, Americans with disabilities and other experts. The commission will identify short and long term policy reforms that could and should be pursued to:

     * Guarantee that all Americans with disabilities who can live in their community with affordable supports have equal opportunity to do so regardless of age, disability, State of residence, employment status or form of assistance required.

     * Create a greater federal role in equitably financing and enhancing the quality and appropriateness of all long-term services.

     * Eliminate the institutional bias in Medicaid and Medicare that robs millions of Americans of their most basic freedoms, dignity and daily independence.

            The commission will submit findings and recommendations to the Kerry Administration and the leadership in both houses of Congress by July 26, 2005 - the 15th anniversary of the ADA.

 

5. Will you appoint a high level task force to review the funding of long term services and supports and make recommendations on concrete ways to reverse the institutional funding bias?

 

w Kerry: Yes, I am the only candidate for President in either party to propose creating such a commission and I will do this in my first 100 days in office. Many say reversing the institutional bias that pervades so much of our health financing systems and robs so many Americans of the opportunity to live full lives is impossible. I believe it is not only possible but imperative to the future of our Nation. See #4.

 

6. Will you support/develop long term service and support policies that enhance the consumer direction/self determination of personal attendant services by allowing persons to select, manage and dismiss attendants?

 

w Kerry: Yes, I believe we should work to enhance consumer directed care. People with disabilities deserve the right to make decisions that directly impact their own lives and the services and supports they need. That includes selecting, managing and dismissing attendants.

 

7. Will you support/develop long term service and support policies that will de-medicalize personal attendant services by allowing physician/nurse assignment/delegation as well as tasks being defined as non medical?

 

w Kerry: Yes, I will develop policies that enable people with disabilities to access non-medical services which improve their quality of life. To make Medicare and Medicaid more responsive to the needs of people with disabilities of all ages, I will direct HHS to identify cost effective ways that best promote the health, independence and productivity of people with disabilities and improve upon the permanent risk adjustment payment system to promote better health care.

 

8 . Will you support/develop long term service and support policies that will develop wage and benefit incentives so that there is a large pool of attendants available to meet the growing personal attendant service needs in this country? Currently you can make more money working in a fast food restaurant than as an attendant.

 

w Kerry: Yes, we need to recruit and train more highly motivated Americans to become attendants, home health aides, nurses and paraprofessionals. These individuals work around the clock to make it possible for millions of children, adults and older Americans with disabilities to live in their own homes and communities. We need to make sure these indispensable workers are well compensated, receive appropriate health coverage and other opportunities to advance in their life and career.

            Margaret Mead said that every society must be ultimately judged by how much it values and supports its very young, its very old and those with disabilities. Today, we also must judge ourselves by a fourth critical criterion: how well we value, compensate and support those whose job it is to assist Americans with significant disabilities of every age with such essential tasks as eating, bathing, dressing, using the bathroom, and going to school or work.  Sadly, we are failing badly at this throughout the nation. Together, we can and must change this.

 

9. Do you support the integration mandate in the Americans with Disabilities Act, ADA and believe this mandate is a federal civil right?

 

w Kerry: Yes.

 

9a. If elected what actions will you take to protect this right?

 

w Kerry: The integration mandate is a federal civil right. The letter and intent of the ADA is to put an end to the segregation that persons with disabilities historically have suffered, and June 22, 1999, marked a pivotal moment in that effort. On that date, the United States Supreme Court held in Olmstead v. L.C. that under some circumstances, the ADA requires states to provide community-based services rather than institutional placements for individuals with disabilities.

            I believe that the de-institutionalization and integration of persons with disabilities into the community is of fundamental importance. By providing persons with disabilities the opportunity to work, participate in civic life, and become community leaders, we strengthen our entire community. As President, I would support programs such as MiCASSA that promote integration of persons with disabilities.

 

10. Will you include people with disabilities, including ADAPT members, in the development of all policies that effect the community long term service and support system?

 

w Kerry: Yes, absolutely. People with disabilities will always have a seat front and center in the Kerry Administration. I have released a comprehensive platform on disability issues which was developed in collaboration with leaders of the disability community from across the country. When I am President, Americans with Disabilities will play active roles not only in policy-making which effects the community long term service and support system but in every single area of public policy.

 

Statement from John Kerry

March 22, 2004, Washington, DC - John Kerry, Democratic Candidate for President, issued the following statement on ADAPT’s demand to be “heard” on removing the institutional bias in Medicaid.

            “I applaud the more than 400 ADAPT activists uniting in Washington, D.C. to demand their voices be heard regarding the critically important issue of ending the immoral institutional bias in the Medicaid program. We must no longer treat Americans with disabilities as second class citizens by failing to respect the fundamental human and civil rights of people with disabilities of all ages to live where they choose.”

            “President Bush has promised New Freedom for people with disabilities. But, the policies he’s pursuing undercut the “real freedom” that people with disabilities deserve and are entitled to by virtue of their citizenship. Like all of us, people with disabilities want to live the American Dream. But many lack even the choice as to where they live.

            “I have heard your voices loud and clear, and have demonstrated this with my vision for Americans with Disabilities based on Freedom, Independence, and Choices. I believe that all Americans, including those with disabilities, have an inherent right to be treated as first class citizens, and that is why I have strenuously opposed the far right’s efforts to undermine the Americans with Disabilities Act and other critical civil rights laws.”

            “I am firmly opposed to the Bush administration’s proposals to turn Medicaid into a block grant to the States. I believe we must strengthen and protect Medicaid, not tear it apart. We should help states carry out the Olmstead decision and enact MiCASSA and the Money Follows the Person Act. As with racial segregation, we must put an end to the institutional bias in Medicaid that prevents millions of Americans of all ages from experiencing freedom, independence and choice.”

            “Finally, I promise as President one of my first orders of business will be to adopt a Community First policy by creating a national bipartisan Community First Commission made up of Members of Congress, Governors, distinguished older Americans, veterans, people with disabilities and other experts to work to assure that all people with and without disabilities have the freedom, independence and choice they rightfully deserve.”

 

Tennessee v. Lane

High Court Upholds Rules

in Disabilities Act

In Previous Cases, the Court Has Limited the Effect of the ADA

The Associated Press May 17, 2004

            WASHINGTON — The Supreme Court upheld the rights of disabled people under a national law meant to protect them, ruling Monday that a paraplegic who crawled up the steps of a small-town courthouse can sue over the lack of an elevator.

            The 1990 Americans With Disabilities Act properly gives private citizens such as George Lane the right to seek money in court if a state fails to live up to the law’s requirements, a 5-to-4 majority ruled.

            In previous cases, the high court has repeatedly limited the effect of the ADA, so Monday’s outcome was unexpected.

            At issue in Lane’s case was the right of private citizens to try to pursue alleged violations of the ADA in federal courts. Advocates for the disabled claimed that the fear of hefty damage awards was a powerful tool to force state governments to follow the requirements of the ADA.

            “The unequal treatment of disabled persons in the administration of judicial services has a long history” that has persisted despite anti-discrimination laws, Justice John Paul Stevens wrote for himself and Justices Sandra Day O’Connor, David H. Souter, Ruth Bader Ginsburg and Stephen Breyer.

            The case began when Lane tried to sue the state of Tennessee for up to $100,000 for what he claimed was humiliating treatment that violated the ADA.

            Lane crawled up the Polk County courthouse steps once for an appearance in a reckless driving case, but was arrested in 1996 for failing to appear in court when he refused to crawl a second time. Courthouse employees have said he also refused offers of help.

            Tennessee did not dispute that the courthouse lacked an elevator, or that the state has a duty to make its services available to all. The state argued, however, that Lane’s constitutional rights were not violated and that he had no right to take the state to court.

            The state claimed that Congress went too far in writing the ADA, because the Constitution says a state government cannot be sued in federal court without its consent.

            Stevens said Congress had ample evidence of discrimination when it wrote the part of the law at issues in Lane’s case. Called Title II, it guarantees that the disabled will have access to government services.

            “It is not difficult to perceive the harm that Title II is designed to address,” Stevens wrote. Congress enacted Title II against a backdrop of pervasive unequal treatment in the administration of state services and programs, including systematic deprivations of fundamental rights.”

            The case is the latest in a series of conflicts over states’ rights and the powers of Congress, but it did not come out like most of the others.

            In a series of cases since the late 1990s, O’Connor has sided with the court’s core conservatives to form a five- member majority that has gradually expanded the sovereign rights of state governments while limiting federal control and congressional power.

            Chief Justice William H. Rehnquist, chief architect of that states rights push, dissented in Monday’s case. Justices Antonin Scalia, Anthony M. Kennedy and Clarence Thomas also dissented.

 

Around the Nation:

Small Can be Beautiful!! Here’s How It’s Done

            A small group of five went to the Watertown Housing Authority Mid Town Towers to see Senator Schumer speak. We carried our bright flourscent signs about MiCASSA. Greeted with some trepidation, as they thought we were there to protest against Schumer, we let the the group of seniors know we were there to show support for Senator Schumer as a sponsor of MiCASSA and also for MiCASSA itself. Relaxing some, they asked what MiCASSA was and I was quick with the handouts. [Editors Note: This is great since Seniors need MiCASSA too but generally don’t hear about it from their advocacy networks.]

            Then the head of the Waterown Housing Authority came along and asked us to leave because our signs were not allowed in the building. We didn’t argue, but rather stepped outside to the front doors. There we were greeted by WWTI TV 50. They asked us about our signs and MiCASSA and if they could interview us. We happily agreed. They spoke to me first and Aileen Martin covered more when I got stuck.

            Then the gentleman from the Watertown Housing Authority came outside and asked us what our issue was. We explained our position and he apologized, welcoming us back in. So back in we went.

            The paper, a radio and a TV station interviewed us about MiCASSA before Senator Schumer arrived.

            When Senator Schumer arrived, he walked through the aisle to the podium and stopped to check out our signs. He said “MiLASSA?” (I wasn’t hired for my drawing ability). Then we said “no MiCASSA, you sponsor it.” He said yes he knew what MiCASSA was and supports it. He went and gave his speech on stopping the move to change Social Security. He took questions from the floor.

            When all questions about the Social Security topic were covered he looked back to us and said, “Do you folks that are here for MiCASSA want to say anything?” Point blank we told him that we need Congress to move now and get hearings started on MiCASSA. Also Rebecca spoke up on how long we have been fighting for MiCASSA and on how much money the government can save with MiCASSA through deinstitutionalization.

            I did approach Schumer at the end to personally thank him for sponsoring MiCASSA. In a hurry, he and his staffer took the time to speak to as many of us as possible.

            It was an awesome experience!!

            Elizabeth Patience, Statewide Systems Advocate, Northern Regional Center for Independent Living

Kansas ADAPT

            More than 60 members of Kansas ADAPT packed a meeting of the Kansas Board of Adult Care Home Administrators (BACHA) on March 12th in Topeka. Advocates accused nursing home administrators of blocking efforts to let their disabled residents know they have a right to live in a community setting.

            “We get thrown out of facilities every day. We get the cops called on us,” said Joyce Jackson, a worker at Topeka Independent Living Resource Center. Charmaine Everett, who spent two and a half years in a Topeka nursing home said, they resisted her efforts to let her live in the community. Her doctor said that if Charmaine had been receiving services in a community setting all this time, she could stand on her own today, without the wheelchair she currently uses.

            ADAPT members pressed the board to sign a memorandum in support of the group’s efforts to move people with disabilities out of nursing homes and to punish uncooperative administrators. Board members refused to sign the memorandum but agreed to form a task force to explore the issues raised by ADAPT.

            BACHA urged ADAPT to file complaints against administrators, but ADAPT scoffed at that being the only solution, claiming the investigations would take months. “That’s a long time when your rights are being denied.”