Mark Johnson always reminds me not to let anniversaries and other dates go by without a reminder and connection to the present. For example, this year marks the 15th anniversary of the Olmstead decision – arguably one of the most important Supreme Court decisions as it relates to people with disabilities. Even today, Georgia is witnessing its impact as the Department of Justice works with the State to close our state-funded institutions. I know there have been problems and not everything has gone as it should have, but it is the right movement for the people who lived there and those at risk of being placed there.
One of the other things Johnson suggested is that we use these anniversaries as a way to encourage change. Click to tweet this!
Can you ask the governor or legislature to reach a benchmark by a certain date? For instance, we should ask Governor Deal to make sure that funding for long term care and supports is at least 50% allocated to home and community based services by the 25th anniversary of the Americans with Disabilities Act?
According to a recent report by the Centers for Medicaid and Medicare Services, Georgia currently spends 45.5% of its funds on home and community based services, so a 4.5% increase in one year does not seem that difficult, especially in light of Georgia already closing its public institutions.
Many of the national associations for organizations like GCDD have come together to create a set of goals for United States policy. This comes as next year will mark not only the 25th anniversary of the ADA, but also the 40th anniversary of the Individuals with Disabilities Education Act. The Six by 2015 campaign has established the following goals:
1. Six million working age adults with disabilities will be part of in the American workforce 2. At least six states will elect to implement the Community First Choice Option so that their Medicaid recipients with disabilities have access to long-term services and supports in the community 3. At least six additional states have at least 60 percent of their students with disabilities graduating with a regular high school diploma 4. At least six states commit to supporting successful and outcome-based programs and strategies for high school transition services and closing the labor force participation gaps for youth and young adults with disabilities 5. At least six states commit to including people with disabilities as an explicit target population in all state public health programs 6. At least six states increase by 15 percent the proportion of children ages 0-3 who receive recommended developmental screening
I know these sound ambitious especially in our state where there are so many issues, but I think these may be some goals that we can all get together on and ask our elected officials to make a commitment that by the 20th anniversary of Olmstead, Georgia is a state where we have doubled the number of people with disabilities who are in the workforce; we have implemented the Community First Choice Act, at least 60% of students with disabilities graduate with a regular high school diploma; there are increased programs targeting the health of people with disabilities; and, that 15 percent of children ages 0-3 receive developmental screens.
How about it – are you with me? Can we ask candidates as they run for office if they will work to achieve these goals over the next five years? Let me hear from you.
Fifteen years ago, when Justice Ruth Bader Ginsberg announced the decision of the United States Supreme Court in Olmstead, it was immediately clear it would become the most important legal victory for people with disabilities in American history. Yet, little changed in the first years after the decision.
The Supreme Court required Georgia, and each of the other states, to provide people who were confined in institutions equivalent supports in the community. However, because of the complexity of this transformation, the Court said that states could create and carry out plans for transitioning from institutions to the community with reasonably-paced moving waiting lists.
This caveat resulted in a lot of planning and very little changing. Georgia formed commission after commission to study how the State would make changes to comply with Olmstead. But it took little action. Real change did not begin to occur until after a series of Atlanta newspaper articles brought attention to terrible incidents at Georgia's state-run psychiatric hospitals. In their 2007 "Hidden Shame" series for The Atlanta Journal Constitution, Allen Judd and Andy Miller wrote that 115 people died under suspicious circumstances in the state hospitals over a five-year period. The problems were linked to overcrowding and poor care. The series began with the story of Sarah Crider, who was a seventh grade girl who died from lethal constipation caused by her medications.
Three months after the first "Hidden Shame" article, the United States Justice Department began an investigation of the state hospitals. The following year the Justice Department sent Governor Sonny Perdue an open letter with findings from its first investigation. It found that incidents at the hospitals were "serious, recurring, and frequently result[ed] in grave harm."
Many disability advocates believed that the Justice Department would force Georgia to finally comply with Olmstead. These advocates were disappointed in January 2009 when the Justice Department and Georgia reached a settlement that did not include Olmstead. Instead, the settlement required Georgia to invest significant resources into the hospitals to ensure that patients were safe and secure. Due to the limited resources of the State, this likely meant that the settlement would actually take from community supports to pay for the changes needed in the hospitals.
Rather than simply accepting the settlement, a Georgia mental health advocate named Cynthia Wainscott sent a letter to the judge asking him not to allow the settlement. Wainscott had gotten leading advocates from across the State to sign on to the letter. Since there were only two parties to the dispute in front of the judge, it was unlikely the letter would have an effect.
It did. The judge ordered briefs to be filed and ultimately decided not to allow the settlement.
A tense period of almost two years followed with Georgia, the Justice Department and disability advocates preparing for a major trial. Despite this tension, and contrary to what happens in many lawsuits, this was also a period of remarkable (if guarded) communication between advocates and state leaders.
Another transformation took place during this time. The US Justice Department, under President Barack Obama decided to make Olmstead a key priority of its Civil Rights Division. Georgia became a focal point for this transformation. This meant that the Justice Department moved away from what it had agreed to in the settlement and prepared for a trial in which it would put Olmstead at the center of what it was demanding. In mid-2010, US District Court Judge Charles Pannell made clear to the parties that they had to settle by October 2010 or there would be a trial. On the eve of trial, the parties reached a final settlement that at the time was the most far-reaching Olmstead settlement in the country.
Georgia agreed that it would enable every person with a developmental disability living at one of the Georgia Regional Hospitals to transition back into the community. It would also provide supports and housing to ensure that 9,000 people with diagnoses of severe and persistent mental illness could live in the community rather than in institutions or other inappropriate settings. The settlement was scheduled to last from October 2010 through July 2015. In the four years since the settlement was signed,
Georgia has had considerable success in carrying out the mental health part of the settlement. Click to Tweet this!
It has had more mixed results with the developmental disabilities part of the settlement.
For people with mental illness, Georgia has created a robust and wide array of services, including 1,400 housing vouchers, Assertive Community Treatment teams, crisis centers and employment. It has closed state hospitals in Rome and Thomasville and closed much of the hospital in Milledgeville.
Georgia has begun the transition of all people with developmental disabilities out of the state hospitals but it has halted the process by agreement between the Justice Department, Georgia and the Independent Reviewer due to significant problems that arose.
In her April 2014 report to the Court, the Independent Reviewer, Elizabeth Jones stated, "Additional time is required for [DBHDD] to finalize its plans for the reform of the system of supports for people with developmental disabilities including the implementations of [Medicaid] Waiver amendments; the restructuring of responsibility and authority at the regional level; the design and implementation of intensive support coordination for medically fragile individuals; the recruitment and retention of provider agencies with the requisite expertise; and the sustained development of sufficiently rigorous monitoring and oversight strategies. Each of these reform efforts is critical to the health, safety, habilitation and integration of the individuals affected by this settlement."
Georgia is supposed to finalize its plan for complying with the Developmental Disabilities Section of the settlement by the end of June 2014 and publish the plan on the Internet on July 21, 2014.
While the Justice Department Settlement has captured the attention of the State and many Olmstead advocates, it is critical to note that the settlement only impacted a subset of Georgians who have Olmstead rights. The settlement did not cover Georgians in nursing facilities or children with disabilities. Also, it did very little to diminish the enormous waiting list for Medicaid Waivers for people with developmental disabilities. In fact, Georgia added between 500 and 1,500 Medicaid Waivers per year in the four years prior to the settlement compared with approximately 250 per year during the settlement.
Thus, while little happened at first after Olmstead, progress is beginning to be made. Still, we have much further to go.
Talley Wells is the director of the Disability Integration Project at Atlanta Legal Aid Society. Wells advocates for housing and supports in the community on behalf of clients with disabilities who are confined in Georgia institutions, nursing homes or at risk of institutionalization of the Supreme Court's Olmstead Decision and ensuring compliance with the Americans with Disabilities Act (ADA).
This year, we celebrate the 15th anniversary of the United States Supreme Court's Olmstead decision. It is the most important civil rights decision for people with disabilities in our country's history.
The reaction was not celebration, however, when the Supreme Court decided to consider Olmstead . The Supreme Court decides which cases it will hear and traditionally only considers about 100 out of 7,000 such appeals. Most cases end at the lower appeals court.
"We were paralyzed with fear," said Sue Jamieson, who was the lead attorney in Olmstead . "We had won [at the appeals court] and we thought the Supreme Court, when they decided to take the case, might reverse it." If the case had ended at the lower appeals court, the decision would have only had an impact on the three states governed by that appellate court— Florida, Georgia and Alabama.
But when the Supreme Court decided to consider the appeal, the decision would impact the entire country. Olmstead began with just two women– Jamieson and Lois Curtis.
Jamieson was an attorney at the Atlanta Legal Aid Society, and she had dedicated her legal services career to representing men and women with disabilities who were stuck in institutions.
In fact, when she moved to Atlanta from Florida, she moved across the street from a mental health hospital. Even before taking the Georgia bar exam, she would take her two young children, her dog and wander around the hospital. She would offer to advocate for the people stuck in the hospital.
She began to advocate in the mid-1990s for Lois Curtis, who was confined at Georgia Regional Hospital in Atlanta. Lois had been in and out of Georgia Regional over 20 times. Sue remembers swimming laps at the YMCA struggling with what she was going to do to help Curtis and being very frustrated with not having the right answer.
Returning to work, Jamieson conferred with other lawyers at the Atlanta Legal Aid Society, including Charlie Bliss and Steve Caley. Together, they decided to use the fairly new Americans with Disabilities Act (ADA) to bring a lawsuit arguing that Curtis had a right to get the supports she needed in the community. The lawsuit would be modeled on a case called Helen L that had been successfully litigated in Pennsylvania.
The case was brought to the federal district court in Atlanta in 1995. The lawyers for Curtis argued that Georgia was discriminating against her under the Americans with Disabilities Act by requiring her to be in an institution.The institution, they argued, was a segregated place because only people with disabilities lived there. Georgia responded that it was not discriminating against her, but was limited in what it could provide by inadequate funding.
While the lawsuit was still in the trial court, Elaine Wilson, who was also confined at Georgia Regional, joined the case. She too requested the chance to return to the community. Federal District Judge Marvin Shoob ruled in favor of Curtis and Wilson. The State appealed to the Eleventh Circuit Court of Appeals and then to the United States Supreme Court. At the Supreme Court, 26 states initially signed on to a brief with Georgia in support of the state's position that it should not be required to provide supports in the community. Disability rights advocates pressured these states to change their minds. In the end, only seven states supported Georgia's position. Curtis, Wilson and their lawyers from Atlanta Legal Aid went to Washington, DC for the oral arguments. The case was argued on their behalf by Michael Gottesman, a veteran Supreme Court advocate. A number of the Atlanta advocates were surprised by how small the courtroom was and how close to the Justices everyone sat. Both sides were peppered with questions during the argument. Justice Ruth Bader Ginsburg announced the decision of the Court on June 22, 1999.
A majority of the Supreme Court ruled in favor of the plaintiffs. They, and others with disabilities, had the right to receive supports in the community rather than in institutions when three conditions were met:
(1) the treating medical professionals determined that a community setting was appropriate; (2) the person with a disability did not object to living in the community; (3) the provision of services in the community was a reasonable accommodation.
The Court observed that when Congress passed the ADA, it declared that the law was "to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities." The Court decided that institutionalization was a form of discrimination. The Court also said that unnecessary isolation of people with disabilities is discrimination because many people will assume that people who are institutionalized are unable or unworthy of community life.
It was also discrimination because "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment." The decision that Lois and Elaine could live in the community did not apply just to them. Since the decision came from the United States Supreme Court, the decision applied to thousands of people with disabilities across the country.
Each had a right to live in the community rather than an institution if the three conditions of Olmstead were met.
Atlanta Legal Aid lawyer Charlie Bliss remembers coming to fully appreciate the impact of the case when he saw Wilson a few years after Olmstead. She had undergone a remarkable transformation from a tense, stressed woman confined to an institution to a remarkable woman living a full life in the community.
The case, he concluded, was about "giving people a chance to live meaningful lives."