6th Anniversary of Olmstead vs LC/EW Speech

My fellow citizens – we are indeed blessed to live in one of the greatest experiments in democracy known to the world today, America. Our Constitution and Bill of Rights have inspired many nations to grant to their own citizens the kind of freedoms and liberties we enjoy in this great country. We are given liberty, guaranteed freedom where others must struggle against the heavy hand of oppressive regimes. Our forefathers knew firsthand the problems of dealing with tyrannical governments, the whims of kings, and interests of royalty that catered only to the desires of the elite.

Having then risen up against the greatest navy and most powerful nation in the world at that time, our forefathers penned what are now immortal words - We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. --That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, --That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

Within those words lies our cause of freedom and our right to dissent. America stands to the world, as a nation of hope, a nation of tolerance, and a nation open to embrace equally all no matter gender, race, class, religion, or disability. In this country we are equal in definition. Here we honor difference, individuality. In America all people are supposed to be respected to live as they choose. However for people with disabilities, the American dream is still one of shortfall.

Our government has imposed across this land a network of institutions and nursing homes to warehouse the population as we become disabled by birth, traumatic injury, or later by age. Long term care is in our country a for profit industry where revenue is pitted against the quality of people’s lives and their care. Even children are not spared, the callousness of this equation. We the disability and aging rights communities have told the policy makers time and time again that we want our government to support us in the community, in our own homes, where we can be part of our families, and our children’s families. Still they continue to fund institutions instead of community based supports. We have told them over and over again - support us where we find inspiration to inspire others.

The government insisted all they had to provide was nursing homes and institutions as appropriate long term care services for people with disabilities. Two women said no adamant that it need not be this way; challenging the empty rhetoric, accepted notions, and ways of institutional care. With the help of the Georgia Advocacy Office - Elaine Wilson and Lois Curtis took on big government.

In May 1995, while still institutionalized, Lois filed suit in United States District Court for the Northern District of Georgia, challenging her continued confinement in a segregated environment. Her complaint involved Tommy Olmstead, then commissioner of the Georgia Department of Human Resources, the Superintendent of the institution, and the Executive Director of the Fulton County Regional Board. Lois alleged that the State's failure to place her in a community-based program, once treatment professionals determined that such placement was appropriate, violated, Title II of the ADA. Lois requested that the State place her in a community care residential program, and that she receive treatment with the ultimate goal of integrating into mainstream society. Elaine then joined suit.

After 3 months of deliberation Elaine and Lois won their landmark case, setting precedence for countless others who could now sue states for violating their own civil rights. Generations of people will owe their freedom to these two women and the lawyers who defended their cause. The Supreme Court upheld Title II of the Americans with Disabilities Act stating "Subject to the provisions of this subchapter, no qualified individual with a disability shall, by reason of such disabilit, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity."

Congress then instructed the Attorney General to issue regulations implementing Title II's discrimination proscription. - "public entities must administer ... programs ... in the most integrated setting appropriate to the needs of qualified individuals with disabilities." A further prescription called for "reasonable-modifications requiring public entities to "make reasonable modifications" to avoid "discrimination on the basis of disability,".

Though we are winning battles we have not won the war. There are still over 2.2 million people with disabilities warehoused in nursing homes across this country. Georgia ranks 41^st among states spending 80% of long term care dollars on nursing homes and institutional care. We want our state and all states to stop dragging their feet on people’s lives. We want Governor Purdue to support, people, families, and community. Most states currently have no mechanism to determine if a person would want to stay in the community with support services such as community care or the independent care waiver. ADAPT wants state governments to utilize the available federal case management funds to determine appropriate community services BEFORE individuals go into nursing homes especially since once a person becomes institutionalized; they usually lose their apartment and all available support systems.

I am lucky to have negotiated life while on a Waiting List to receive services through the Independent Care Waiver. Having survived those initial years of minimal care and ultimate struggle, I can speak from my own experience of coming up through the system that it is the most difficult thing that the government can place on individuals who already have so much more to deal with. Ideally when someone becomes injured, a person familiar with the system should inform the individual injured as well as family members, of all the programs available to aide the individual and families to take control of their lives again. Given a choice most of the people warehoused in nursing homes or institutions would love to live in their own homes and receive services in the community where they can be an active part of citizenship.

We cannot afford to allow society to devalue our lives. What happened to Terri Schindler Schiavo was just another in a long line of public lynching. What happened to her was a national travesty. Terri could swallow water and food. She was placed on a feeding tube out of convenience for nursing home staff. A lot of the public thought that Terri was the first person this happened to, and also that she would be the last. But we know the truth. They were testing us to see what kind of outrage would happen if any.

Most went back to their routine lives. We on the other hand were horrified. ADAPT calls upon the state and the nation to uphold an immediate and permanent moratorium on the starvation/dehydration of people with disabilities. We do not treat animals in such ways and our Constitution protects even the nation’s worst criminals from such cruel and unusual punishment. To be sustained with food and hydration through a feeding tube cannot be allowed to be considered medical treatment. People with disabilities must be given equal protection under the law. We demand habeas corpus.

The ICWP has proven to be a godsend for individuals and families of individuals like myself, who have grown to love the independence and quality of life that it enables. Many of us have utilized the gift it has brought to our lives to work for and advocate for the independence of others. When the ICWP started it, was to address the needs of people with really high level disabilities who required the greatest amount of care. The basis of the program had been initially to give those who had no where else to go a chance at life outside a hospital room or institution. For those of us blessed to have the waiver in our lives, I can assure you it has saved us immeasurable amounts of suffering. I appeal to Governor Perdue and the Georgia legislature to unlock the waiting lists and all citizens to support 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-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow dollars to follow people, 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 would authorize 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. I leave you with a quote from Justin Dart, “Get involved in politics as if your life depended on it, because it does.”