Two stories in the Disability Scoop online news feed this week illustrate how the country needs a national push to fulfill one of the key components of the Americans with Disability Act (ADA), reaffirmed by the Olmstead decision, that citizens with disabilities have the right to live in a home in their communities.

On this anniversary of the ADA we owe it to people with developmental disabilities and their families to finally remove the fear of institutionalization.

The first article reports that states are “failing to meet their obligations to transition individuals with disabilities out of institutions and into community settings” as required by the Supreme Court’s 1999 Olmstead v. L.C. ruling that unnecessarily segregating individuals with disabilities in institutions is a violation of their rights under the ADA. A 2010 study by the U.S. Senate Health, Education, Labor and Pensions Committee finds that “the number of people with disabilities in nursing homes is on the rise and, as of 2010, just a dozen states devoted the majority of their Medicaid dollars to community-based care.”

The next day the Scoop ran an article about a federal suit against Florida for its inappropriate use of nursing homes as placements for younger people with disabilities.

If trends like this continue it poses a risk for any person with a developmental disability no matter what their current situation is. Here in New Jersey that risk is all too real. Even though it is not the state’s policy to place someone in crisis in a developmental center or nursing home we all know what happens when an emergency situation arises late in the day or over the weekend. The institution is just down the road. It will only be for a few days until something more appropriate can be arranged. People get busy. The person is deemed to be in a safe environment. Days turn into weeks, months, years. If these “out of sight, out of mind” options are available they will be used. Once used, a person whose family never would have approved of an institution for their son or daughter when they were alive and able to care for them themselves finds themselves in one, possibly for the rest of their lives.

That’s why everybody in this community should be troubled by these trends and should get involved in advocating for their reversal. Not just those who live in states like New Jersey where institutions are still an integral part of the system—although it is even more important here. Not just those families who are getting older and nearing a time when these crises are more immediate.

What we need is a national commitment; a national policy that ensures that people with developmental disabilities will not be faced with the prospect of being forced into an institution because that happens to be an option. They and their families should not face that threat as they cross state lines and life’s thresholds.

This violation of one’s basic rights should not be subject to what is most convenient or politically expedient in a particular region of the country at that particular point in time. Like other rights protected by other laws, the ADA and its Olmstead clarifications should be applied equally throughout the country. I would go even further and say additional challenges need to be made to eliminate some of the wiggle room in the law so that once and for all people with developmental disabilities can leave the stigma and memories of the institutional era behind forever.

Of course, eliminating the institutional option for people with developmental disabilities doesn’t fix all the problems in the community supports system, although it is my opinion that it will infuse that system with much needed resources that can be used to address some of those issues. Of course the ongoing commitment to watchdog and constantly improve those services should continue, as it should have with the old institutional system when it was dominant, before it blew up in scandal and outrage.

What we’re talking about here is more fundamental. It is about the fundamental right of every person to not be excluded from their communities simply because they have a developmental disability. It is about their fundamental right to have the same fundamental rights as the rest of us. The only way to ensure that is to eliminate the institutional option entirely, nationwide.

It’s that simple.

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Disability in Focus