This Olmstead Anniversary, we’re taking a moment to highlight its historical significance in promoting equal rights for people with disabilities. An emblem of resilience and progress, this anniversary is perfectly represented by Bob Kafka. A renowned Disability Activist for over forty years, Bob not only co-directs the Institute for Disability Access but is a lead organizer for ADAPT and REV UP Texas. He is a familiar voice on Barrier Free Futures, where he has been discussing key disability issues since 2018.
25 years ago, Lex Frieden and Bob Kafka were in front of the U.S. Supreme Court advocating for the rights of people with disabilities (seen here in this Focus on Abilities interview from 1999, text below**) to live in their homes and communities and are still doing so – together – today.
Bob’s Accessible Soap Box
25th Anniversary of the Supreme Court’s Landmark Olmstead Decision
Let me start by saying that since June 22, 1999, when Ruth Bader Ginsburg delivered the majority opinion (6 – 3) on the Supreme Court’s landmark decision I have always been bothered by how, too often, we refer/celebrate this case as the Olmstead Decision (Olmstead v. L.C., 527 U.S. 581 (1999). We should call our celebrations of this historic case the Curtis/Wison Decision. Why?
The impact of the litigation, based on the integration language in Title II of the Americans with Disabilities Act (ADA), was about the “liberation” of real people. Sometimes we lose our focus and celebrate the means rather than the ends. This case is about two amazing women, Lois Curtis, L.C., and Elaine Wilson, E.W., who were the heroines of this story. They were two women with disabilities living in institutions in Georgia who had the courage to fight for the right to live in “the most integrated setting possible”.
Who did they challenge? Tommy Olmstead, who at that time, was the Commissioner of the Georgia Department of Human Resources, and who represented the State of Georgia. His name is now how we refer to a decision that has given freedom to thousands of people with disabilities. He and the state of Georgia were the ones who wanted Lois and Elaine to stay stuck in that institution and who fought to keep them in.
How we refer to the decision may be a small thing to some; however, it is important to remember our focus should on the people with disabilities of all ages who are in, or are in jeopardy of, going into institutions. Though specific numbers are hard to come by, conservatively hundreds of thousands of people with disabilities of all ages have transitioned from institutions to community since the “Curtis/Wilson” Decision was handed down.
ACTION SPEAKS LOUDER THAN WORDS (LIBERATIONS)
When asked to do this blog post about celebrating the 25th anniversary of the “Curtis/Wilson” Decision it dawned on me that the most appropriate way to honor the decision was to challenge all the Centers for Independent Living (CILs), Area Agencies on Aging (AAAs), Aging and Disability Resource Centers (ADRCs), I/DD and mental health entities to commit to get five (5) individuals with disabilities of any age out of an institution (liberation) during the period of June 22, 2024 to June 22, 2025.
These thousands of liberations will change the lives of those freed from institutions, and like Lois and Elaine, they too can live in the community fulfilling the words of community integration written in the ADA and this Supreme Court decision.
However, anyone who has worked to liberate a person from an institution to a community setting realizes it takes time, resources, and affordable, accessible, integrated housing. All must be matched with the needs of the individuals getting out. Yes, there is a scarcity of all these liberation tools, however we should not use this scarcity to ignore our brothers and sisters locked away in institutions. These difficulties should not produce a scarcity of caring or effort on our part.
The reality is that, at the same time we are using existing resources to liberate people, we need to advocate for more state and federal funding to enhance what exists today.
- Money Follows the Person (MFP) funding which began in 2005 still exists, however a third of the states have not even applied for this funding.
- The CILs are now required, as a core service, to transition people with disabilities out of institutions as well as provide services to keep folks from going into an institution.
- The Older Americans Act has strong language about how AAAs should use community services to keep people out of institutions.
- States could fund Relocation/Transition Specialists through Medicaid fee for service or managed care to support more people to live in the community.
Let’s not let these impressive wins for the disability community be simply pretty words from our mouths or printed on paper. Let’s celebrate “Curtis/Wilson” by reaching our hands out and pulling another person with a disability out of these human warehouses and into a life of their choice in the community.
If Lois and Elaine could dream it and pave the way for the rest of us, surely we can pick up the torch and continue the liberations for more people with disabilities. That should be our celebration.
***Transcript from the Video
Transcript of HTV interview of Bob Kafka by Lex Frieden at the US Supreme Court, June 21, 1999, Washington, DC.
[Lex] This is Bob Kafka from Austin, Texas, from an organization called ADAPT. Bob, what does ADAPT stand for?
[Bob] ADAPT now is just ADAPT. Used to stand for the American Disabled for Attendant Programs Today, but our acronym is now just ADAPT.
[Lex] And ADAPT has a kind of a vested interest in this demonstration here tonight, right?
[Bob] Our whole campaign is what we’re calling the campaign for real choice, is to give individuals and families a choice to where they live and receive services. And if Olmstead is overturned, people will potentially be forced back into institutions and won’t have the right to choose community-based services.
[Lex] You and I are here from Texas in front of the Supreme Court in Washington, DC; what is the implication of what’s happening here for people in Texas and people in Houston?
[Bob] Well, when people in Houston, if some family or an individual with a disability is confronted with needing services, in Texas with waiting lists on almost all the programs, they will have to either go into a nursing home or a state institution. They will have no other choice.
[Lex] So even though we know that people can live in the community at a lower cost or at least no more cost than in an institution, those people would be forced by the state to live in a nursing home or an institution.
[Bob] Right. And you correctly stated, forced by the state, forced by the state legislature and Governor Bush to basically choose to have to go into that institution because they cannot have the choice of getting community-based services. Even though, like you said, it’s cheaper, we know the quality of life is better, and they actually do better.
[Lex] Now, as I understand it this case is about two people from George who were living in the community; the state said they should live in an institution, and the courts up and down the line supported the people living in the community.
[Bob] Right, and in point of fact, what actually happened was they were originally in a state institution that was actually funded by public dollars and they actually had to sue to get the right to live out in the community. One now lives in a group setting, a small group setting, and the other has their own apartment and is living with a roommate. And at a cheaper rate, it is unbelievable. The state of Georgia actually has not put them back into the institution, but then appealed it to the Supreme Court.
[Lex] Now, Bob, the implications, again, from the standpoint of Texas. As I understand it, Texas is one of the few states in the country that actually joined Georgia in this appeal. Is that right?
[Bob] Texas was one of the first of the 22 states to ask the Supreme Court to take the case and is only one of seven remaining on the case now. We have had meetings with Governor Bush and Attorney General Cornyn. They are using the line that this is a state’s rights issue. We have said this is a civil rights issue. This is not a state’s rights issue.
[Lex] So, out of the 22 states that were originally on this appeal, there are only seven left. The others withdrew because they changed their mind about the validity of this argument.
[Bob] By talking with the disability community. We have compelling letters from the Massachusetts Attorney General, from the Louisiana Attorney General, from the Utah Attorney General, basically saying because of their relationship with the disability community and their commitment to their state, community-based services, they withdrew because they didn’t understand originally the implications, but now did.
[Lex] Now, didn’t Texas hear from the disability community?
[Bob] They have heard over and over. We have had resolutions passed. We’ve had archdioceses, we’ve had city councils. Travis County has passed resolutions. Basically, Governor Bush has said he is supporting the decision by Attorney General Cornyn of state sovereignty. I mean, this is very much like George Wallace standing in the schoolhouse door saying, segregation now, segregation forever. It is really no different. This is the same state’s rights. If this was people of color, if this was a women’s issue, people would be appalled. And because it’s just people with disabilities, I believe our governor and our attorney general are getting away with it.
[Lex] Bob, some of the people here that are going to spend the night tonight, if this case turns out to support the state of Georgia and the state of Texas and the other states that have appealed this, some of these people would be living in institutions. I mean, their states would put them back in the nursing home.
[Bob] It’s quite possible. I mean, again, you know, because states will then have the right to just basically limit the community services, and there’ll be entitlements to institutional services. And not only the people here who are receiving, some of them receiving services, but anybody who is born with a disability in the future, anybody who breaks their neck, somebody who becomes older, are now going to be forced into institutions because if the Supreme Court overturns Olmstead.
[Lex] Okay, but the hope of all these people is that the Supreme Court will support the lower court’s rulings and that people will be able to live in the community.
[Bob] Right. In fact, you know, we are hoping that the Supreme Court will see the argument that most integrated setting makes a lot of sense and it makes sense for all services, including community services.
[Lex] Okay, well, good luck to you, and thanks for being out there. I appreciate you all coming out and keep working in Texas. All right. Thanks, Bob.
[Bob] Bye.