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We’re Not There Yet

Tuesday June 2nd, 2015
We’re Not There Yet

We’re Not There Yet

Tuesday June 2nd, 2015 / 0 Comments

By: Professor Steven Eidelman

2015 is the 25th anniversary of the signing of the ADA. We will be posting 25 posts over the course of 2015 which will focus on the ADA- how it has changed society and what still needs to be done. Our goal is to cover for you, dear reader, as many different angles and issues as possible. Below is the sixth post in our #ADA25For25 series. The most recent post was The High Price of Disrespect.

We are about to celebrate, this July, the 25th Anniversary of The Americans with Disabilities Act. “The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation”. The ADA is hailed by people with disabilities, policymakers and disability organizations as the Civil Rights Act for people with disabilities.

A recent article in The Atlantic tries to justify new congregate care facilities for people with autism and other developmental disabilities. The same, old, tired arguments are brought out…people are safe (they are not and in fact may be less safe), they are healthier (not sure where they get this) and that people are isolated in community programs. The solution to isolation then becomes to put a lot of people with disabilities together with paid staff which does nothing to address isolation from the larger community. And it is the larger community that keeps you safe, and offers the possibility of real community and friendship.

Notice I said possibility. While the research supports small, scattered site housing, people in their own homes and people in family homes getting supports, those calling for the new segregation and isolation seem not to care about the data. They foolishly think that they can overcome the barriers that we know are inevitable: isolation, abuse and ongoing loneliness and passive neglect. They confuse nice looking housing- and the drawings and photos are of places that look nice- with the need for support, which is where most of the costs in residential programs lie. Housing is a mere 5-10% of the total cost.

Lior and Tomer- examples of independent living

Lior (right) with Tomer- 2 people living independently in the community with the help of Israel Unlimited

Both the promise and the premise of the ADA was to level the playing field, to allow people with disabilities to have access to the same opportunities, with reasonable accommodations, as people who do not have disabilities. One goal was to eliminate unnecessary segregation and isolation of people with disabilities from the general society in the U.S. When you look at the UN Convention on the Rights of People with Disabilities (CRPD) you see a lot of the thinking of the ADA incorporated into this international convention which, sadly, the United States Senate has, twice, failed to ratify.

The ADA has spawned both civil litigation and federal regulations. Perhaps the best known is the Supreme Court decision Olmstead vs. L.C. (1999) based on the ADA, which called unnecessary segregation a violation of the law. It required people with disabilities to receive services in the most integrated setting possible. Intentional communities, villages, farms and apartment buildings comprised of people with disabilities are not the most integrated settings possible…not even close.

To receive public funds to support people- recall that most of the costs are personnel, not housing- there is a necessary reliance on public financing, most of which comes from Medicaid. In response to Olmstead, The Centers for Medicare and Medicaid Services (CMS) issued rules with the express purpose of “To ensure that individuals receiving long term services and supports through home and community based service (HCBS) programs under the 1915(c), 1915(i) and 1915(k) Medicaid authorities have full access to benefits of community living and the opportunity to receive services in the most integrated setting appropriate.”

So the promise of the ADA, Olmstead, and the CMS rules all fly in the face of The Atlantic article’s position. We can do better. People worked too hard to let a small minority set the progress towards inclusion of people with disabilities back.


Steve Eidelman is the H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware. He is a past President of the American Association on Intellectual and Developmental Disabilities and serves as Senior Advisor to the Chairman and CEO of Special Olympics International. Steve also serves as the Executive Director of The Joseph P. Kennedy, Jr. Foundation.


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