ANCOR Links: Season 2, Episode 2

André Floyd

Welcome to season two, episode two of ANCOR Links, a podcast produced by ANCOR. This podcast was created to highlight the link between an array of conversations and the work toward full community inclusion for people with disabilities. We find links everywhere from pop culture to more direct sources like self-advocates and public policy. And our goal is to introduce you to someone or something interesting each episode and help provide depth to the ongoing work of true community inclusion. In this episode, we’re going to talk about the Supreme Court’s 1999 Olmstead decision, and it’s a perfect time to do so. If you’re much better at math than me, you’ve already noticed that 2024 will mark the 25th anniversary of the decision, officially June 22nd. But what is Olmstead? Have you ever heard of it? Why are we, here at ANCOR, and many other disability-adjacent spaces, agencies, organizations, why are they all marking the anniversary? What makes it so meaningful? How did the case even make it to the Supreme Court? This episode will provide many of those answers through a couple of conversations that I had with two extremely knowledgeable sources. Before we get to the history though, we need to get to the obvious answer and the obvious question. What exactly is Olmstead and why is it important? So here’s part of a conversation I had with my coworker Lydia Dawson, ANCOR’s Vice President of Government Relations. Lydia details how Olmstead is connected to a very important piece of legislation that you’re probably already familiar with, the Americans with Disabilities Act, which was signed in 1990.

Lydia Dawson

The Americans with Disabilities Act set forth a prohibition on discrimination against people with disabilities. But what constituted discrimination at different points was really largely uncalled out. And so what Olmstead did was it brought forward some principal determinations of what constitutes disability discrimination and brought in those elements of how does institutionalization that’s unnecessary or unwarranted perpetuates discrimination, and what’s the necessity in place of community-based services in a larger system of supporting people with intellectual and developmental disabilities. Olmstead v. L.C. was a case that was brought forward by two women who were voluntarily admitted to an institution. It was a state-run psychiatric unit in Georgia. And so they were there for a long time. And at the conclusion of their medical treatment and any type of support they received there, they were determined to be ready to move into a community-based program, and come back to their homes, but the women remained confined in the institution for a number of years. And so they ultimately brought suit under the Americans with Disabilities Act, asking to be released from the hospital, released from an institutional form of care and begin receiving community-based treatment.

André Floyd

Like so much of the work in progress in this field it is the tremendous courage and advocacy of many people, but specifically people with disabilities, happening in conjunction with legal pushes to challenge preconceived notions about people with disabilities and the type of lives they are capable of living. So much of the work is educating people who may not know and specifically to people in charge of changing laws and or regulations that make harmful assumptions about people with disabilities. The journey towards securing the Olmstead decision is a perfect example of a broad coalition of efforts working toward one goal. One person in the middle of the efforts at the time was a lawyer named Ira Burnim. Ira worked for the Bazelon Center at the time and still does, but was one of the lawyers assigned to work on this case. And I was fortunate enough to spend time with Ira to get a firsthand account of how this vital ruling, Olmstead, came to be.

Ira Burnim

I’m Ira Burnim, a lawyer. I was the legal director of the Bazelon Center for many years, including when the Olmstead case was pending in the Supreme Court. And I had the opportunity, then, to kind of coordinate the effort to secure a victory in that case of the Supreme Court. For want of a better word, I kind of managed the case in the Supreme Court.

André Floyd

Ira was there all the way and did a terrific job of providing so much context to the journey towards securing the Supreme Court’s Olmstead decision in 1999. But one thing Ira stressed is that this all didn’t start in 1999. After all, it is not easy to get a case in front of the Supreme Court. And in truth, while the 1990 Americans with Disabilities Act, the ADA, was key to Olmstead, the actual journey toward deinstitutionalization and community inclusion began decades prior.

Ira Burnim

In the 70s when this dein work began, you know, the institutions were really by and large horrible places. And people may be familiar with the Willowbrook case. That was an institution in New York City, on Staten Island, believe that was the subject of a big expose. It was an institution for people with intellectual disabilities and You know, that was one of the early cases. There was a famous case in Alabama called Wyatt v. Stickney that led directly to the founding of the Bazelon Center. And there was a decision there that all of Alabama’s institutions, its state psychiatric centers and its state centers for people with intellectual disabilities had conditions that violated the Constitution. And in that case, the judge, Judge Johnson, ordered that there be care provided to people that was consistent with a set of standards that would sound like normal and kind of obvious standards today, but they were somewhat of a revolution at the time. And one of them was the right to receive services in the least restrictive environment. And that became a principle of law that was widely adopted. It’s in the IDEA, the special education laws. And it’s in the ADA, but it’s kind of stated differently. And the ADA talks about receiving services in the most integrated setting, which means essentially the setting that’s the settings in which you find people without disabilities.

André Floyd

Ira listed case after case that from the early 70s and into the 80s, they questioned institutionalization for people with disabilities. Like most cases, some won, some didn’t. Some were appealed and, you know, nothing was solidified. They were all on a state-by-state basis and as a result, there was no federal precedent or regulation to lean on. It was all up to each individual case, the judge, the lawyers, the state, and politics of the time. So you can imagine that everyone who had been part of trying to right wrongs through these cases on a state-by-state basis was enthused about the potential of a new federal regulation, new federal legislation that was gaining momentum prior to 1990, the Americans with Disabilities Act.

Ira Burnim

The ADA had a second important principle, not just “don’t discriminate,” but “change the world so that people with disabilities have an equal opportunity” to receive services, to receive benefits, to participate in the community. And that’s what the reasonable accommodation or the reasonable modification requirement is. It’s a requirement that governments and private businesses, private actors, that they depart from their normal business practices when that’s necessary to afford people with disabilities an equal opportunity to participate or benefit from their services. So you can think of, you know, ramps and physical changes, but it also requires changes to accommodate and give equal opportunity to people with not just physical disabilities, but psychiatric disabilities, intellectual disability, and any kind of disability. And the question that was, people were thinking about at the time, when the ADA was being considered, and right after it was enacted, is would the ADA also include this right to community care as opposed to institutional care?

André Floyd

While the ADA gave them a thread, there was still a lot of work to be done. I mean, think about the timelines we already know. The ADA, signed in 1990, Olmstead, 1999. We know legal processes take time, but that is nearly a decade. The aim now is to ensure that they were able to secure the right for community living and community-based supports for people with disabilities through a specific interpretation of the ADA. In order to do so, it took a lot of work. Some states were nervous. This sort of system of community-based support didn’t exist. Who would pay for it? How would quality be determined? Basically, this goes through what happens next. As Lydia mentioned, the central case was the result of two people with disabilities taking on the state of Georgia for their right to no longer be institutionalized. And it was actually Georgia that wanted to get the case before the Supreme Court.

Ira Burnim

When Georgia took the case to the Supreme Court, they were saying basically, you know, the sky is going to fall in if this decision is upheld. You know, we need you, the Supreme Court, to intervene and to get rid of this idea that states have to offer community services because if that becomes the law, it’s just going to wreak havoc and it’s going to really undermine the ability of states to provide care. And when Georgia made this request to the Supreme Court, they were able to get a lot of states to support them. You know, the states filed what’s known as a friend of the court brief, an amicus brief. I think there were maybe 22 states. There were a lot of states that supported Georgia.

André Floyd

As we know, change is hard. Can be hard. I think it can be viewed as a little uncomfortable for some people, but especially when you’re talking about big structural changes like this. It can be very difficult. But when civil rights and freedoms are severely restricted, the answer is to work towards something better, more fair and more human. But that took some convincing. And okay, if I’m honest, as Ira put it, it took a coalition, not just the coalition in support, but also to siphon off support for institutionalization. So in this next bit, you’ll hear Ira speak about P&As, and I just want you to know that that stands for Protection and Advocacy Systems. And he will also mention ADAPT, which is a grassroots disability organization.

Ira Burnim

One of the things that we wanted to do after the Supreme Court took the case is to kind of change the message to the court. So, it was a political effort that was really run by what’s now the National Disability Rights Network, the P&As. And also ADAPT had a huge role in that and other disability grassroots groups. And the effort was to minimize the number of states that would support Georgia once the case was actually heard by the court. You know, that was all activity about whether the court would take the case, because the court doesn’t have to take cases, it chooses which case to take. So in the end, there were very few states that supported Georgia. And there were even some states that initially had signed an amicus brief, on the merits when the case was being heard by the Supreme Court, that as a result of political activity, sent letters to the court saying, oh, never mind, we didn’t really mean to join that brief. So there were states that literally changed their position as a result of political activity. So we had that. We were trying to persuade the court that this wasn’t going to be the end of the world, that this wasn’t something that was going to really undermine, if not destroy state systems of services.

André Floyd

So what Ira is sketching out for us now is a multi-faceted coalition. He even talked about political activity a number of times in our conversation when it came to the work that was done to siphon off support for institutionalization of people with disabilities. He mentioned significant work done by a lot of groups to put significant individual pressures on key figures throughout multiple states.

Ira Burnim

It was very targeted to the decision-makers in the state, the governor, the attorney general, both of them, you know are elected officials. And so these coalitions got together decided on strategy, you know, how to reach the governor, how to reach the attorney general. And you know, some of the pitch was just on the merits, you know, why the governor or the attorney general should support community care rather than institutional care, or support the idea that unnecessary institutionalization was discrimination under the ADA. And some of it was the usual political activity of showing that there were a lot of people who would be unhappy if the governor and the attorney general didn’t do the right thing, and that could have consequences at election time. So it was both kind of traditional political activity, do the right thing, there’ll be election consequences if you doubt, and then this kind of civil disobedience. But it was a very impressive political effort that, as I said, was coordinated largely by the National Disability Rights Network, and it definitely had an impact.

André Floyd

Moral arguments, civil disobedience, politics, legal strategy. It took so much. So of course, after hearing all that had taken place from the 70s to the frantic time after the ADA was announced to the Supreme Court accepting the case, I wanted to ask Ira a very simple question. What was it like when the decision came down in favor of something so many people had worked for so long and it would be so impactful to the lives of people with disabilities and the futures that they would be able to have.

Ira Burnim

It was, I think, a remarkable effort that brought us this decision, you know, a remarkable effort by the disability community, by the lawyers who are fighting for this legal right. I mean, it’s one of the high points, of course, in my legal career. And I think it’s had such a big impact on so many lives. So it’s very satisfying to know that you were part of something that made a difference and that continues to make a difference. When the case was decided, I think a reporter from USA Today called me and asked me to explain the significance of the case. And, I said it’s the Brown v. Board of Education for people with disabilities. And in many ways that is true. Brown versus Board of Education, of course, was the school desegregation case. And, you know, Homestead was about ending the segregation of people with disabilities in institutions. Because institutional care, it’s not just, you’re in an institution as opposed to being in your own home, but you really are segregated almost completely, um, from the community, from normal life. Uh, and so, you know, we were able to at least not necessarily end the regime in Olmstead, but you know, because it didn’t end, you know, school segregation didn’t end right after Brown versus Board. It took decades to finally achieve desegregation. But we were able to establish that legal principle. And I think 25 years on, we’ve seen a lot of progress made in implementing it.

André Floyd

And the awesome thing is that this precedent that was set by all that work so long ago is still relevant today and still helping to improve the lives of people with disabilities. And when I say relevant today, I don’t just mean that it was a great decision and it changed things and people are certainly living more in the communities and were working to make full community inclusion a right. Yes, that was the promise, that was the interpretation, that was the decision. But beyond that, legitimately, in court still, court cases still, Olmstead is used as precedent to settle cases to help improve the lives of people with disabilities. In fact, let’s bring Lydia back in because I wanted to talk with Lydia about this very thing, and she noted that there are several cases a year that lean on Olmstead and the specific protections that it grants.

Lydia Dawson

We continue to see class actions, lawsuits, and certainly lots of people that we hope to provide support to, bringing forward these issues based on the problems that we’re seeing today in creating a really strong HCBS infrastructure. So we continue to talk about Olmstead not only to recognize this really critical moment in time where we really thoroughly understood that unjustified segregation of people with disabilities constitutes discrimination in this very specific context, but also because, it’s a fight to continue to stay vigilant in ensuring those rights can be exercised. If we don’t have a system of services, if we don’t have the support people need in order to remain in the communities, we put them at a higher risk of needing to access those kind of services in a more restrictive setting. So we’re still seeing, Olmstead claims today and still seeing active lawsuits today holding our systems accountable for making sure people have access to the support that they need.

André Floyd

I mean, honestly, it is kind of an incredible piece of legislation. And I hope that we have done a pretty good job of explaining what Olmstead is, but also explaining what it took to get the decision. Everything that had to go not just right, but the minds that had to be changed, the hearts that had to be changed, the education that had to be part of it, the strategy, everything that went into creating this, getting this decision that was so critical and so important and so important that is still used in courts right now, these days, in the present day, and has ever since it was, the decision came down in 1999. And I wanted Lydia to kind of have the last word on just why it’s so important that people are aware not only of the Americans with Disabilities Act, but also Olmstead, because it is the foundation of so many of the supports and services that we see today. And yes, there are a lot of other challenges within the field, but without that foundation, without Olmstead, it would make it significantly more difficult. And even beyond that, now that Olmstead is a decision that we can lean on and have been doing so for 25 years now as we’re in the 25th anniversary, it is just so critical and so amazing that such work that went into this legislation, that went into securing this decision, is still relevant each and every year. So here’s Lydia to sum it all up.

Lydia Dawson

It is so critical that everyone is aware of the Americans with Disabilities Act and the disability discrimination that people feel and experience every day. It is a constant effort and a critically important effort that we continue to make our systems better, make our responses faster to enforce the rights of people with disabilities and prohibit discrimination. The anniversary of Olmstead is a great opportunity to celebrate what a huge landmark this case has been in furthering the rights of people with disabilities, better defining the rights that they’ve always had, and reflecting back on that. But it also is an opportunity to really renew our commitment to ensuring that community-based services are available. And that means really looking at these cracks in the system that have created a higher risk of institutionalization. And those are things like the workforce crisis, chronic underfunding in the system, and a lack of personalized supports. These are the kinds of things that we need to not only reflect on as we think about the anniversary of Olmstead, but really recommit ourselves to fixing those things and working together to ensure people with disabilities are able to access the full benefits of these systems, and prevent any unnecessary institutionalization and disability discrimination.

André Floyd

This episode is dedicated to the memory of Lois Curtis and Elaine Wilson, the two women with disabilities who took this fight from Georgia to the Supreme Court. Elaine passed away in 2005, and Lois passed away in 2022. Their memory endures forever.

Thank you for listening to ANCOR Links, a podcast produced by ANCOR. You can learn more about us at ancor.org. If you enjoyed this episode, please do not forget to share, rate, and review. We’ll talk to you again soon.