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When Georgia ADAPT marched last month, Governor Sonny Perdue was out of town -- as he so often conveniently is when we desire dialogue with him. Not to worry: we will see him in Seattle, and we have a message for him, and the other governors.'It has gone on long enough. We deserve the choice.'
By Zen Garcia
LAST MONTH Georgia advocates celebrated the fifth anniversary of the Olmstead v. LC & EW Supreme Court decision in which all people with disabilities won the right to lives integrated in community with long term care services delivered at home instead of an institutional setting.
Georgia ADAPT honored this landmark decision by organizing and marching for four long days of sweltering heat and brutal sun. The "Long Road Home" campaign brought advocates together from all over the state.
From the old capitol in Milledgeville the caravan traveled on to Central State Hospital and its cemetery, passed the old Brook Run institution, then traveled on to Shepherd Center for a march down Peachtree Street to the new capitol in Atlanta, culminating in a visit with the Governor's office.
I joined the marchers on their final leg of journey for what Mark Johnson termed would be "a celebration or a confrontation." Upon arrival at the capitol, Carol Jones told me, "it could get ugly. There may be arrests."
As I went in to join the group I passed many old friends from various factions of the disability advocating community: Mark Dyer, Bernard Baker, Kate Gainer, Jerilyn and Mike Leverett and their now-grown-up daughter Victoria, Beth and Nancy Tumlin; Renee Peak, Leonard Roscoe and their son Nigel. Families were here representing hundreds who had for years been on waiting lists, awaiting community-based in-home services. These were people who were on the front lines everyday, whose lives were now a quest, a struggle to see all people with disabilities entitled to choice in their own lives.
Governor Sonny Perdue was out of town -- as he so often conveniently is when we desire dialogue with him. Even though he would not hear our concerns on this day, we knew where he would be from July 16 to 21: in Seattle, for the National Governor's Association annual meeting.
Many of us here would be in Seattle then as well. National ADAPT would be there to greet all the governors and to ask them, "why do you continue to perpetuate nursing home bias in the states of our nation when it is clear that the people you are supposed to represent want choice and alternative to the legislation which allows us to be locked up and away from our families, children, and communities? We have committed no grave crime, caused no one an injustice. We do not deserve the sentence imposed by the callous authority which has no regard for people and our need, our want for integration."
Today, with no Governor around, were granted a meeting with Trey Childress of the Governor's staff and three other representatives on a third-floor conference room where they could hear our grievances and jot down notes for those who would later take heed of our delegation. Mark Johnson fired the shot across the bow, letting them know we were upset and that we meant business. They listened to our story and spoke words we had all heard before. They promised a later meeting with the Governor.
They did take time from their schedules, though, to make an appearance at the gathering at City Hall which Georgia ADAPT was hosting to honor Lois Clark and Elaine Wilson for setting the foundation and legal precedents to sue States for violating people's civil rights.
Forty-seven-year-old Elaine Wilson, characterized with a mild mental disability and a personality disorder, just wanted out of Georgia Regional Hospital, where she had been a mental health "patient". In 1995, Wilson joined a lawsuit filed by fellow "patient," 31-year-old Lois Curtis, who had been diagnosed with a mild mental disability and schizophrenia. She had been institutionalized for three years at Georgia Regional before Atlanta Legal Aid lawyers filed suit in federal court in Atlanta on her behalf.
Sue Jamieson, an Atlanta Legal Aid lawyer, contended that "the Americans with Disabilities Act mandates that people with disabilities get to decide if they want to live a reasonably normal life in a community setting." Jamieson's arguments had prevailed in Atlanta when U.S. District Judge Marvin Shoob first ruled in her favor and in the 11th U.S. Circuit Court of Appeals when a three-judge panel also ruled in her favor. "Certainly the denial of community placements to individuals with disabilities such as L.C. and E.W. is precisely the kind of segregation that Congress sought to eliminate," Judge Rosemary Barkett wrote in a unanimous opinion.
Before the case even reached the Supreme Court, both women had been released and were living successfully on their own. Wilson had taken up ceramics, crocheting and cooking while living with a roommate in College Park. Curtis takes six classes a day at a rehabilitation center with a focus on art, a far cry from life during her stay at Georgia Regional, where she sat in a day room for hours at a time and smoked up to three packs of cigarettes a day. Since her release, she has stopped smoking and lives in a group home in Decatur.
Wilson's and Curtis's case continued on to the U.S. Supreme Court because 26 states joined Georgia in its appeal, and in December of 1998 the high court decided to hear the case.
Tommy Olmstead, then commissioner of Georgia's Department of Human Resources, with the support of the governor at the time, Roy Barnes, appealed to the Supreme Court, saying states had the right to continue denying community access to people with disabilities because it had been historically in the best interests of people with disabilities to receive treatment in nursing homes and mental health institutions. Olmstead feared that releasing patients would jeopardize their/our receiving the proper care.
When I first heard that the Olmstead v. LC & EW decision was going to be reviewed by the Supreme Court, I was a senior at Mercer University in Macon getting my degree in social work, and leader of the local ADAPT advocacy group based out of Disability Connections, a middle Georgia Center of Independent Living. Bart Floyd brought it to my attention that Tommy Olmstead was a resident of Macon and lived not far from where we held our meetings. That was when we schemed to do an action at his house and confront him face to face, with the media following.
It had been a month since we as MaconADAPT had gone up to join the Atlanta posse for a rally at 2 Peachtree -- where the DMA building was --to try to get Tommy Olmstead in a meeting for dialogue about long-term care in Georgia. Of course he was too busy to address us peons of society: Being important has its prejudices.
In fact, he had been too busy to even answer the calls I'd been making to him every day for the two weeks since I'd found out he lived in Macon. I knew he wouldn't answer. He thought no one knew about what he was doing and saying, that this petition would go unnoticed. But ADAPT knew -- and we were going to let him know we knew.
Over 30 strong, we met local TV stations WMAZ 13 and FOX 24 at a nearby Dairy Queen and then converged on Tommy's Stonycreek residence, armed with fluorescent signs inked in slogans of equality and civil rights for people with disabilities. We found a lone car and silence as the welcome to our campaign. So we lined up in front of his quiet neighborhood house, covered the street in protest, and stopped traffic while I talked with the TV reporters, letting them know about Olmstead v. LC & EW and Georgia's biased stance on long term care. We then decorated his mailbox and yard with signs and logo to mark our presence for his later arrival.
On TV that night, all of Macon, as Tommy's neighbors had earlier in the day, found out where he stood as a man on issues concerning the institutionalization of human beings, based solely on disability. Macon also learned where ADAPT stood as a grassroots organization fighting for the civil rights of elderly and disabled people.
A week later, Tommy Olmstead was fired as head of the Georgia Department of Human Resources.
By the time the case was argued in the Supreme Court in April, 1999, more than half the states who'd originally backed Georgia's appeal had bowed to the growing political pressure from disability activists and dropped off the case -- leaving only seven states: Colorado, Hawaii, Montana, Nevada, Tennessee, Texas, and Wyoming.
"To people with disabilities, this case is as significant as Brown v. Board of Education was to people of color," said Mark Johnson, advocacy coordinator for the Shepherd Center in Atlanta. "When the ADA was passed, it was a mandate for integration. Now we've got our state challenging our right to integration."
Olmstead v. LC & EW began as a civil rights case for two women who desired life in the community, but it ended up being a case representing the rights of all people, symbolizing to many of us the decades of legal government segregation and civil rights abuse.
We learned that, at the same time states were fining nursing homes for abuse and neglect, they were giving them bonus for keeping the cost per resident down. This caused an outcry from advocates across the nation.
Since incurring my own disability I had noticed a cycle of misrepresentation that condemned people like myself to nursing home placement. At the time, I was involved with the Georgia Department of Medical Assistance's Long Term Care Advisory Board, and I gave speeches at most of the DMA's Public Outreach Forums, declaring on several occasions that "It is not a lack of money that is the central issue when it comes to long term care, but whether states and corporations have the right to profit at the expense of the people."
Michael Gottesman, a Georgetown University Law Center professor, says it costs less money to provide for mentally disabled people in the community than in an institution. "The evidence is overwhelming in that regard," he insists. "It's politics that explains the states' resistance. It's a combination of the employees in these institutions don't want to lose their jobs, the administrators don't want to lose their kingdoms, and there are still lots of folks out in the community who are happy with continuing to lock these people up and keep them out of sight."
On June 22, 1999, the disability world's spotlight shone on the Supreme Court as disability advocates awaited what would be landmark decision. Cheers echoed through the nation as the United States Supreme Court agreed with advocates, saying that to force persons with disabilities into nursing homes -- or any institution -- without creating alternatives, "constitutes a form of discrimination based on disability prohibited by Title II of the Americans with Disabilities Act."
It has been five years now. More should have been done. People are dying. The Long Road Home campaign was to remind the Governor and his staff, the people of Georgia, and the nation that it is not okay to condemn people to years of nightmarish existence in nursing homes or mental institutions. It is not okay to expect us to be okay with it. And so things must change and now is the time for those things to change. It had gone on long enough without anybody saying or doing anything about it. Too many people have already suffered too much and there is no good reason to allow people to suffer any longer.
The Supreme Court decision gave people with disabilities a precedent, a foundation from which to sue states. Lawyers for persons in nursing homes could now file complaints at the U. S. Dept. of Justice's Office for Civil Rights claiming a civil rights violation based on the decision. In many states, cases are awaiting decisions which will grant freedom to people one case at a time. Because of Olmstead v. LC & EW, states are being forced to come up with alternatives to simply using nursing homes and institutionalization when it comes to writing and submitting long-term care budgets. They are now required to have a plan of moving people out of institutions and back in the community.
Georgia advocates' march last month was to remind everyone of the closing of Brook Run, the passing of the Olmstead decision upholding Title II of the ADA and the "Unlock The Waiting Lists" campaign, which has for years lead the drive for increased funding for alternatives to institutions.
Governor Perdue, take notice: We will see you and the rest of the governors in Seattle. So long as any of you continues to ignore our agenda and continues to shrug us off in any way, then wherever you gather in mass number --or alone -- watch for us, for we are determined to free our people.
We have message for you from millions across the nation: "Free us, let us go, we deserve more than harsh existence and state-funded incarceration. We deserve choice, sunshine, clean air, the sound of children and birds at play. We deserve the choice to do what we want with the lives we are blessed to have. No matter what others or you think about our quality in life; we deserve what we think of life based on qualities decided by those of us who live our lives, in our bodies according to our own situations and circumstance. You may not be able to understand because you do not yet need the assistance of others and that is fine. Those of us who do need the help of others deserve to get that help where we determine and in the way that best enables us to lives of health and happiness.
"Should it be that one day you too need the assistance of others -- and that day will come -- then you will be glad for what we are doing now and will benefit from the experience of those of us who have already gone down this road. Should it be that your children, spouse, sibling, or parent need the services being established because of our efforts, then you too will be glad that day for what we do now; for you will not have to suffer indignities or struggle where we have dared to fight, where many have been arrested or died seeking justice.
"On that day when you or a family member needs what we have set up as choice for all, you will praise us and thank God that others have made this determined effort; that many battled when others told us to accept that "that's just the way it is." Hopefully soon you will side with our efforts and come to understand that what we do is for the freedom, in posterity, for every child born American. Perhaps even what we accomplish here will serve as precedent for every other country of the world, and perhaps they will follow in suit to take care the needs of the whole population, and people everywhere will forever be free from life in institutions. Praise God, let it be so."
Posted June 17, 2004.
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