Impact Feature Issue on the ADA and People with Intellectual Developmental, and Other Disabilities

Sue Jamieson was the lead attorney in the Olmstead v. L.C. Supreme Court case. In January 2014, she gave the following presentation reflecting on the case as part of a colloquium hosted by The Institute on Human Development and Disability, University of Georgia, and held at the David A. Clarke School of Law at the University of the District of Columbia (UDC).

It is really great to be at UDC tonight. This law school has been so welcoming since the day in August last year when I walked in off the street on a visit from Atlanta. I mentioned the Olmstead project to Karen Foreman and the next thing I knew she and Professor Joe Tulman had helped me conceptualize this panel.

Our idea is to focus on how the Supreme Court finally articulated, in the Olmstead decision, the civil right under the Americans with Disabilities Act (ADA) of a person with a disability to freedom from segregation. And beyond that, to emphasize the need for ongoing enforcement of this right. The Olmstead case is now 15 years old. What matters to people who are still institutionalized, still segregated, is its enforcement. We hope tonight you will get a feel for the long struggle for disability rights that preceded Olmstead and, more importantly, a feel for the ongoing struggle represented by a case here in the District of Columbia, Thorpe v. D.C. The plaintiffs in Olmstead were confined in a State psychiatric hospital. Thorpe takes the disability integration struggle to another important frontier, one of the most important disability integration frontiers today – nursing homes.

My role tonight is to tell you how the Olmstead case got started, which will include a little about my own journey and that of the two plaintiffs. Then, I will cover the very basic outline of the decision itself.

How the Case Got Started

By way of background, I worked for 10 years as a legal services attorney for legal services programs before I became interested in representing people in institutions. I had no particular background in disability rights. I had never even been inside a State institution until I had occasion to visit one in north Florida. I was so shocked at the inhumanity of the place that I had one of those light bulb moments. I decided that this is a place where the most fundamental rights of individuals are obviously at risk.I thought to myself it is unlikely that the people locked up in here have any idea what rights they have and it is a huge understatement to say that they could definitely use some legal assistance.

When I say fundamental rights at risk, I mean rights related to basic freedom and autonomy. The individuals I saw, and later came to know over the years, were locked up against their will in crowded spaces, sometimes for years, placed in restraints that tied their arms and legs to a bed for hours, left for days in seclusion rooms, medicated with powerful drugs without consent, cut off from family and friends. Most shocking was the utter disregard of human dignity, lack of privacy, and danger. Of course, there were well-meaning staff, but there was also cruelty and indifference.

When I moved to Georgia, I wanted Atlanta Legal Aid to serve people in State hospitals. I decided to go into the hospitals, pass out my cards and look for sympathetic social workers. Before long, we were able to start a little outreach project to the hospitals.

By the time Lois Curtis and Elaine Wilson, the plaintiffs in the Olmstead case, were Atlanta Legal Aid clients, the project had been operating for about 15 years. We did not typically file federal court cases. In fact, we would often just write letters, make phone calls, and, if that didn’t work, file a case in state court or probate court or try administrative advocacy with state officials. Mostly, we were challenging practices that violated the rights of people who were confined in the hospitals – rights related to commitment hearings, forced medication, restraints, seclusion, and due process rights related to denials of various disability community services.

By 1995, however, when we filed the Olmstead case, two factors led us to federal court. First, although both plaintiffs had experienced abuse in the hospital, the legal problem they presented to me was not a violation of a right to appropriate treatment in the institution. The major problem for Lois and Elaine, and for many of our clients, had become the need for a decent, safe community alternative. “Community alternative” means not only a place to live, but support staff, if needed, counseling, supported employment, peer supporters, and help managing daily life. In other words, more than a brief moment of freedom…more than a few months in a personal care home before returning to a State hospital through the revolving door.

And second, state law remedies were inadequate. Most state laws required a showing that involuntary commitment was “the least restrictive alternative,” but did not impose any affirmative obligation to fund community programs. We hoped that a federal law, the ADA, would offer the solution we needed.

Just a few words about Lois and Elaine. Lois and Elaine both had diagnoses of schizophrenia, developmental disabilities, and “behavior problems.” It was clear that the “behavior problems” resulted from the many years both women were confined in institutions.

Lois was in her early 30s when we filed. She had been institutionalized for most of her life since she was 14. She was raised by a single mom in a public housing project. Her mom lived in constant fear that Lois would get herself in trouble, especially when she became a teenager. When Lois, who was intellectually limited and vulnerable, would wander the neighborhood, her mom would call the police and have her committed to a State hospital.

Shortly after the case was filed, Lois was finally released to a group home with a detailed community-based service plan developed through the litigation. She now lives on her own with personal supports. She never went back to a hospital. And Lois has become a respected artist with regular exhibitions of her work.

Elaine was raised by a middle class mom who had been advised when Elaine was a child that it would be best for her to be placed in an institution. Elaine lived in and out of State hospitals for 45 years before we filed, and eight years in the community afterwards. She died in 2005 from complications after surgery.

Elaine had been hospitalized 65 times before she got the services she needed through litigation. Once she was finally free of the fear of re-institutionalization, her outgoing, sociable personality came through and her sense of humor. During her eight years of freedom, Elaine developed a slide show about her journey from mental hospital to independence. With the help of an assistant, she was invited to tell her story many places. What I will always remember about Elaine was her nurturing concern for Lois when they were together and the thank you notes she used to write to the attorneys.

Basics of the Decision

It is Title II of the ADA that prohibits discrimination by public entitles and in public programs. A regulation promulgated under the ADA, called the integration regulation, obligates public entities to provide services in the most integrated setting. This is the section of the ADA and the particular regulation that formed the basis of the plaintiffs’ argument.

Although the Olmstead plaintiffs were segregated in a State psychiatric institution, the case applies also to people in nursing homes because private nursing homes provide services through public programs. The most prevalent of these is Medicaid, but there are other publicly-funded programs that serve people in nursing homes.

The Supreme Court, in an opinion by Justice Ginsberg, summarized in two sentences the claim that Lois and Elaine presented:

This case concerns the proper construction of the anti-discrimination provision contained in the public services portion (Title II) of the Americans with Disabilities Act of 1990…Specifically, we confront the question whether the proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions. [Olmstead v. L.C., 1999, p. 587]

Justice Ginsberg answered her own question with a “qualified yes.” The “yes” was qualified by three “conditions.” These are sometimes referred to as the three prongs of Olmstead: (1) The person’s treatment professionals need to agree that community placement is appropriate; (2) the person is not opposed to community placement; and (3) placement can be “reasonably accommodated” given the needs of others in the State’s disability service system [Olmstead v. L.C., 1999, p. 587]. Another way to put this third prong is that the State is not required to fundamentally alter its system if it has a plan of action to move people into the community and a waiting list that moves at a reasonable pace.

There are problems with this language, but as the cases emerge over time the basic integration principle is carrying the day. The big step forward is that the State cannot justify segregation by showing that it provides treatment or habilitation in the State facility. If the person could receive that support in the community, then segregation in an institution is discriminatory. The State has an affirmative responsibility to provide community alternatives.

My favorite part of the decision is the Court’s powerful analysis of why isolation is discriminatory:

• Unjustified isolation is properly regarded as discrimination based on disability.
• Institutional placement of a person who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.
• 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. [Olmstead v. L.C. 1999, p. 600-601].

Thus, under Olmstead, unnecessary institutional segregation is discrimination and lack of community supports is no excuse.

Before concluding, I want to remind everyone that things have improved since Olmstead, partly in response to the case, but mostly in response to the determination of advocates in the years since the decision. Now we can look at crumbling massive State institutions and say, what were we thinking? But we can still look around any state in the country and see segregation in community programs, nursing homes, schools, detention centers, and the list goes on. There is, in other words, much work to be done.

Conclusion

In closing, I want to explain that our Supreme Court adventure was never imagined. We were thrilled but also terrified when the Court granted Cert at the State’s request. Happily, that is when the entire national community of civil rights advocates rallied round our legal aid program. This ad hoc coalition of amici and grassroots organizations in every state working together convinced the Supreme Court that Lois and Elaine should not be institutionalized, that they deserved the opportunity to live in neighborhoods and communities like anyone else. If the public system needs improving or expanding then the State needs to get busy because a lack of alternatives does not excuse discrimination.

Ultimately, back at legal aid, we learned that freedom from segregation is not measured by one case. Instead, the case is part of a complex, heroic fabric woven by the efforts of those who went before and those who continue the struggle now.