The 18th Anniversary of the Olmstead Supreme Court Decision

Today is a day of independence for Matthew Jennings, of Lititz, Pennsylvania, who is 24 years old and lives with a rare chromosomal disorder that elongates his bones, makes it difficult for him to talk, and causes fatigue and slower cognitive processing. It is a day of independence because today is the 18th anniversary of the Supreme Court Olmstead v. LC decision, a case that definitively affirmed the rights of people with disabilities to live where they want to live and to have control over their own lives.

Matthew is able to live at home with his mother and brother because of the Americans with Disability Act and the 1999 Olmstead decision. The ADA and the Olmstead decision represent the Emancipation Proclamation for people with disabilities in the United States. So today is a day to celebrate the recognition of Matthew’s rights and the rights of all people with disabilities.

It is also a day to remember that these rights are hard-fought and need to be vigorously protected.

Most of us take for granted the freedom to live where we want to live, shop where we want to shop, and even eat and sleep when we want to. Freedom to choose for yourself is a freedom that is essential to the American experience. That freedom has not always been a reality for those with disabilities.

Perhaps a little history is warranted here.

Prior to 1990, many people with disabilities such as Down syndrome, cerebral palsy, intellectual disability, and chronic mental health conditions, lived in nursing homes or state institutions. In those settings they had very little freedom. Their schedules were controlled by the institution. Times for meals, trips away from the facility, and even visitors were regulated.

The passage of the Americans with Disabilities Act changed much of that, at least in theory. Title II of the ADA clearly states that governments shall not discriminate the provision of services, programs, or activities based upon disability.

But many states continued to discriminate against people with disabilities by continuing to only provide support services for people with disabilities in institutional settings. When Lois Curtis brought suit against Tommy Olmstead, the Secretary of Human Services in Georgia, asking to receive her services in the community rather than in an institution, the case went all the way to the Supreme Court.

In a landmark decision, the Court found that states and localities must provide services to people with disabilities in their homes and communities, not only in institutions, and that people with disabilities could choose where and how they wanted to live.

Olmstead has become the great civil rights decision for people with disabilities, commensurate with the landmark Brown v. Board of Education Supreme Court decision of 1954.

But Olmstead is at risk today.

Without long-term services and supports for people with disabilities to live in their own homes, work, and be part of their neighborhoods, Olmstead, and the freedom it affirmed, are but a dim dream, an abstract right, without the tangible support to make it a reality.

Most long-term services and supports are provided to people with disabilities through Medicaid. In 2013, Medicaid provided $83 billion to ensure people with disabilities had home health aides, personal care services, durable medical equipment, and many other supports that made it possible for them to live independently and be full participants in their communities.

But Medicaid is under attack. The Republican House health care bill radically changes the structure of the Medicaid program and cuts over $800 billion. Analyses of these changes and cuts find that long-term services and supports will be cut by state programs and people with disabilities will lose the supports they need to live in the community. If reports of the emerging cuts in the draft Senate bill are correct, the cuts in the Senate will be far deeper and more destructive over time. Dramatic cuts in the Senate bill may be tantamount to a prison sentence, and in some cases, a death sentence for people with disabilities.

Without Medicaid funding, Olmstead becomes a wish, not a reality. Without Medicaid, Matthew Jennings won’t be able to live with his family. He won’t have an augmentative speaking device that allows him to talk. He won’t have a powered wheelchair that allows him personal freedom. He won’t be able to get to work. And he won’t have the power to make his own decisions.

So today we celebrate the rights that the Supreme Court affirmed 18 years ago for people with disabilities to live, work, and be part of the community. And today we must fight against Medicaid cuts and the efforts of Republicans to turn back the clock 50 years on the rights of persons with disabilities so that those rights remain a reality and not a dream deferred.