For more, see Kathleen Brian’s companion article on exclusion as a feature of the insurance industry, as well as Jade Shepherd’s examination of the benefits of institutionalization in Victorian Britain.
by A. Kenneth Wuertenberg
Twenty-two years ago Atlanta Legal Aid sued the state of Georgia on behalf of two women with intellectual and mental health disabilities, setting into motion a process that resulted in one of the most important human rights mandates of the modern era of mental health treatment. After wending its way through the courts in June of 1999 the United States Supreme Court determined in Olmstead v L.C. that “unjustified segregation of persons with disabilities constitutes discrimination in violation of the title II of the Americans with Disabilities Act.” In the majority decision authored by Justice Ruth Bader Ginsburg, “the Court held that public entities must provide community-based services to persons with disabilities when: services are appropriate; the individuals do not oppose community-based treatment and community-based services can be reasonably accommodated.”
This decision was monumental, and not just for people with mental illnesses. Before the Olmstead ruling, disabilities were treated as an obligation of the state and were addressed mainly by moving people out of their homes and communities (away from all that was familiar to them and into cold clinical environments in state run institutions that were often in isolated locations). In its decision, the Supreme Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “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.” So the court was essentially saying that institutionalization – a practice that had long been utilized as an accepted treatment for people with disabilities – actually creates and perpetuates a bias that people with disabilities are either not able to live in or not deserving of living in a community setting. In essence, the court came to the same conclusion that most institutionalized people lived by experience: that living in an institutional setting long term is simply not good for you.
Since that decision in mental health care state governments have put into motion “Olmstead” plans that guide them in ensuring that individuals receive treatments in the “least restrictive environment.” This generally means that treatment takes place in a community based setting where natural supports such as family and friends are available to help provide the practical and emotional support we all need to maintain our wellness. Services such as psychiatry, counseling and peer support are also available and locally based. A recent study by the Kaiser Commission found that the Olmstead decision has also influenced how Medicaid funds its services: there is now an emphasis aimed at providing community-based services in the most integrated setting to allow people with disabilities to interact with peers without disabilities.
“In essence, the court came to the same conclusion that most institutionalized people lived by experience: that living in an institutional setting long term is simply not good for you.”
This shift has had a massive impact on the daily lives of Americans with disabilities, an impact that the Faces of Olmstead feature on the ADA website makes very clear. Providing community-based services has actually prevented institutionalization for people at risk. Old style sheltered workshops that employ people with disabilities in isolated environments, downplay the need to teach them marketable skills, and often pay them less than minimum wage have been replaced with integrative supported employment that encourages independence. The emphasis on community services has also helped to eliminate disability-based discrimination within the Medicaid program. Before the decision, people with disabilities were forced to enter institutions in order to qualify for the funding they needed for proper care. Now, they can qualify for Medicaid without leaving their lives and families behind them.
“The advent of the Affordable Care Act ensured that millions of people with unmet mental health needs would be addressed though increased access to health care, screening requirements, and expansion of Medicaid funded services. As the current administration and Congress allows the system to collapse through neglect, these people will ultimately be placed at risk.”
Anyone familiar with the history of institutional treatment before the Olmstead decision can appreciate how many lives this particular policy change could have impacted had it happened sooner. An exhibit at the Museum of disABILITY History in Buffalo, New York titled The Lives They Left Behind: Suitcases from a State Hospital Attic documents some of those lives, telling the stories of some of the many people involuntarily committed to the Willard Asylum (open from 1869 to 1995 in the Finger Lakes area of New York). When workers went through the abandoned buildings following closure they found hundreds of suitcases, never unpacked, that belonged to the people that had lived there (some for their entire adult lifetimes). In those days, criteria for commitment was vague at best. Any malady deemed incurable could result in being sent to Willard with little likelihood an individual would ever leave. According to the website accompanying the exhibit, during its time over 54,000 people came to Willard with “nearly half leaving in a casket.”
The Willard closed just before Olmstead was decided. You would think that the example of the Willard alone would be evidence enough to ensure that the institutional approach be abandoned. But it is not. The progress made through Olmstead is threatened. Funding for community-based services lags woefully behind need as increasing numbers of people with unmet mental health needs bloat the prisons of the most incarcerated nation on the face of the planet. According to a 2014 study by Levit, Kassed, Coffey, et. al. found that for the period from 2003 to 2014 the rate of spending on mental health care was about the same as the rate from 1986 to 2003 and was growing at a slower rate than growth in health spending overall. Calls for reopening institutions from poorly informed politicians who lack historical context and possess only rudimentary or no understanding of mental illness continue to come to the forefront. The advent of the Affordable Care Act ensured that millions of people with unmet mental health needs would be addressed though increased access to health care, screening requirements, and expansion of Medicaid funded services. As the current administration and Congress allows the system to collapse through neglect, these people will ultimately be placed at risk. Where and how they will receive much needed treatment is a question as yet unanswered. Whether mandates for screening for depression and suicide will remain in place is unclear. Most importantly, ensuring parity in care so that mental health needs and physical health needs are treated equally under health plans is imperative for the future well being of our nation.
A. Kenneth Wuertenberg is the CEO of the Mental Health Association of Franklin and Fulton Counties in rural Pennsylvania. MHAFF is a peer-run organization providing licensed peer based services and promoting wellness through advocacy for person centered care.