OLMSTEAD. In disability rights circles, it’s almost like a magical incantation. It seems to stand for so much, and its has done a lot. But it’s also often misunderstood, and it’s real implications are at the same time under-used and over-hyped. On the 21st Anniversary of the 1999 Olmstead Supreme Court decision, now might be a good time to reflect on its past, present, and future.

The Olmstead decision is more fully described as the U.S. Supreme Court decision in the case of Olmstead vs. L.C., in which L.C. was a woman with mental and intellectual disabilities and Olmstead Tommy Olmstead, the Commissioner of the Georgia Department of Human Resources. The decision was based on Title II the Americans with Disabilities Act, (ADA), which applied the landmark 1990 disability rights law to state and local governments. L.C. had spent years in psychiatric institutions, and wanted instead to live independently, in a regular community residence of her own, with mental health and disability supports provided to her there instead of in closed, regulated facilities. The Supreme Court ruled 6 justices to 3 that since the ADA requires state and local governments to provide its services to people with disabilities in “the most integrated setting” whenever medically feasible, that Georgia could not insist on institutional care simply because it was more convenient or easier for the state. The fact that sufficient community supports didn’t fully exist at the moment was not an excuse. Within reason, the state would have to change its systems and services to ensure that people who could do well in the community would be able to do so.

Most significantly, Olmstead established that keeping a person in an institution when they can otherwise function well outside one if they choose is a violation of their civil rights.

This was a ground-breaking decision because it affirmed what disability activists had instinctively felt for a long time … that lots of disabled people in institutions didn’t necessarily need to be there, and that it was a violation of their civil rights to refuse to accommodate their needs in more integrated, community settings. Whether fully understood even by the deciding Justices, it set a legal precedent that all states would at least have to consider how it provided long term care. A Presidential Executive Order in 2001 added weight to this by requiring every state and territory to make a plan to implement Olmstead, in part by expanding the options for getting long term care in the community, and helping smooth the path for people in nursing homes and other institutions to move out, not because their disabilities changed, but because they preferred to live independently and could feasibly be supported to do so. It might be difficult for states to do this. It would require work and changes in longstanding routines. But it had to be done, or at least reasonably attempted.

So, what has the Olmstead decision meant since then? Is it still relevant? Has it worked as advocates hoped? And what can be done to strengthen the principles of Olmstead in the future, and ensure more disabled people are able to forge their own independent lives with the supports they need?

When the Olmstead decision came out, it came to mean three distinct things for people with disabilities in institutions or who needed any sort of long term care:

1. It felt a bit like disabled people’s version of Roe vs. Wade. That is, it was a Supreme Court decision that provided a core legal argument for disability rights. It went a long way towards establishing a long-cherished goal of disabled people as a civil right that could never be fundamentally challenged or completely denied.

2. Olmstead became a kind of shorthand for the complex issues of institutionalization, home care, and independent living. It became a way to refer to an issue familiar to millions of disabled people, but often quite unfamiliar and obscure to others. Eventually, everyone even marginally connected to long term care would come to know basically what Olmstead was about, whether or not they fully understood or accepted it. It became much harder for anyone of importance to the issue to claim ignorance, or to deny that choice and independence were important priorities.

3. The decision held out some hope that it would be an effective tool for individual disabled people to achieve their own specific independent living and community integration goals. It looked like a key that would unlock the door out of the nursing home, the large state institution, the group home, or the mental hospital for people who felt ready to live on their own. Unfortunately, some people confused it with a law or a program … as if a thing called “Olmstead” would actually give you stuff or make things happen automatically. In reality, Olmstead is a principle, not a program … more of a tool or an argument than a key.

In our justified enthusiasm for Olmstead, we have often missed the fact that it is often less than ideal as a tool for independence, equality, and community integration than it may appear.

1. Individuals still have to advocate for themselves to make Olmstead work for them. It’s had some effect on the broader landscape, making independent living and community integration a more viable and understood goal for disabled people in facilities or at risk of going into them. But just saying, “Olmstead” doesn’t immediately shatter barriers. Most people with needs that are in any way complex — and that’s the case for most people in institutions or at risk of being placed in them — have to fight to get what they want.

2. Olmstead staked out an absolutely critical legal principle, but also left a lot of wiggle room. Specifically, it preserved quite a lot of influence by medical professionals to determine what any individual disabled person might “need” or “require,” and whether or not independent living is “feasible” for them. Exactly what a person needs, and exactly how much, can still be a barrier to people getting the services they need to live where they choose. The Justices also made it fairly clear in their decision that they did not intend it to say that congregate, institutional care should be phased out entirely, or that every disabled person in every situation has an absolute constitutional right to live outside of an institution. Olmstead does not render all nursing homes or other institutions unconstitutional or illegal.

3. People with intellectual and developmental disabilities, and, (ironically), people with mental illness, haven’t benefitted as much as they probably should have from Olmstead. This may be partially because of the structure of the decision itself, and how much deference it still grants to medical and social work professionals, but also because of strategic priority decisions made by leaders in disability rights movements. Much of the most aggressive activism for implementing Olmstead has been by, and to some extent for, people with primarily physical impairments.

4. Enforcement of Olmstead, like that of the rest of the ADA, has been spotty and generally light. Some useful measures have been put into place, like requiring institutions to periodically survey their residents to find those who wish to leave, so they can be assisted to do so. States have done some work to reform their service systems to bring them into compliance with the decision. But there has also been a lot of foot-dragging and apathy. And progress in the development of home care and other community supports continues to be sluggish. Conditions are better than they were in 1999, but not radically so. Most long term care systems are fundamentally the same as they have always been, and only a few new programs or funding streams have been created, such as the Money Follows The Person program. It has done much, but it is still more of a project than a fundamental and permanent systemic change or addition to available services for everyone.

What does the future hold? What new ways can Olmstead be used going forward?

1. The Covid-19 pandemic could add a new element to how the medical appropriateness of institutional care is assessed. Given how deadly the close confines of institutions are during outbreaks of infectious disease, it’s even less convincing to say that they are more “healthy” for disabled people than living on their own. And the widespread failure of nearly all congregate care facilities in the face of Covid-19 could permanently undermine their image as islands of care, safety, and good order. Doctors may begin to take all this into account when making judgments about what’s best for individual disabled people.

2. Bills like the Disability Integration Act, and various models of single payer healthcare can continue to build on Olmstead and reshape how actual long term care delivery programs function in the future. But it needs to be done carefully. Plenty of otherwise excellent health care bills and systems, both in the U.S. and abroad, end up doing a poor job of supporting disabled people in their choices and community integration. We simply cannot ever take our eyes off the ball.

3. It wouldn’t hurt to rethink and rewrite how we explain Olmstead to future generations, refreshing its core language and re-energizing its core arguments. We can be more careful not to over-state Olmstead’s reach, while reinforcing its central principles.

At its best, Olmstead is a useful tool and a powerful argument. It isn’t a “get out of nursing home free card.” We still have to fight individually if we want to stay out or get out of congregate care. And we still have to fight collectively and creatively to reshape how long term care is organized and funded.

21 years later, Olmstead is still just a starting point.

 

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Andrew Pulrang spent many years working at the North Country Center for Independence in Plattsburgh, NY, most recently as the Executive Director. He is a co-coordinator with disability activists Alice Wong and Gregg Beratan of the Twitter hashtag, #CripTheVote, focused on discussing the participation and leadership of disabled people in voting, politics, and disability policy.

Published on June 22, 2020