Limited Funds, Lingering Bias Has Delayed States’ ADA Compliance

George H.W. Bush signed the Americans with Disabilities Act into law in 1990, but more than two decades later, problems still persist in implementing portions of the landmark civil rights measure. Judy Woodruff reports on the struggle states face to fully transition individuals with disabilities out of institutional living.

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    It's been 23 years since the Americans With Disabilities Act became law.

    Judy Woodruff reports on the advances and the setbacks in the continued fight to implement the landmark legislation.


    Five days a week, 54-year-old Ricardo Thornton can be found at Washington, D.C.'s Martin Luther King Jr. Memorial Library. Born in the District of Columbia, he has worked here for more than three decades. And his full-time employment is just one of the accomplishments Thornton has used to rise above a label placed on him as a child.


    I am a person with mental retardation. When you have that label, wherever you go: Oh, he has a disability. Oh, it's mental. Oh, come on. OK. You going to be with him? There was just that kind of trust wasn't there.


    Last year, Thornton moved into a two-bedroom house in Washington with his wife, Donna, of 29 years, who also has a developmental disability.

    While they still receive some support for daily living needs and light supervision from a not-for-profit agency, having a place of their own was a dream come true. They had lived in small apartments for more than 20 years, where they raised their son.

    So what does it mean now to have your own home, to be on your own?


    It's beautiful. It means that I'm now part of a community that loves me.


    Thornton had a much different living situation as a child and young adult, moving through various institutions for those with disabilities.


    Some of them were treated just so bad and then some were treated good. But, you know, I felt that I'm doing time for a crime I never committed. And why?


    That experience was common before the Americans With Disabilities Act was signed into law 23 years ago by President George H.W. Bush. The civil rights measure made it illegal to discriminate against people with disabilities, including by unnecessarily forcing them to live in segregated settings in order to access government services.

    But the states, who have much of the responsibility to provide care for those with disabilities, moved slowly to comply. That's because of limited funds and what experts say is a lingering bias.

    Jennifer Mathis, director of programs at the Bazelon Center for Mental Health Law in Washington:

    JENNIFER MATHIS, Bazelon Center for Mental Health Law: Change is hard because you have years and years of service systems that were premised on a different vision about the capabilities of people with disabilities, that didn't envision people with disabilities as living regular lives, the same kinds of lives that the rest of us, having families, having jobs.


    So, even after the ADA became law, many people with disabilities were not being moved by the states out of large institutions and into homes and community-based programs.

    In response, in 1999, the Supreme Court handed down the Olmstead decision, reaffirming the ADA's integration mandate. It held that unjustified segregation constitutes discrimination. And it served to push states into compliance.

    Fourteen years later, the picture has improved. States have made progress nationally, and they have reduced the share of Medicaid spending for individuals with disabilities living in institutions like nursing homes and special hospitals.

    But, as Senator Tom Harkin, who co-authored the ADA, discovered through a new report he commissioned, most states are still not providing the home and community-based services people with disabilities need.


    This is a civil rights issue, not a social welfare issue. And so states see it as a social welfare issue. They have the holdover bias toward institutionalization. And nursing homes have powerful lobbies, can I add that, in the states. So things just tend to go on like they have always been going on.


    The report Harkin commissioned found that hundreds of thousands of people remain on waiting lists for home and community-based services. People younger than 65 are being isolated in nursing homes, with wide disparities from state to state.

    And it's happening even though there's overwhelming evidence that finds home and community care costs less than institutional care. Harkin compares the situation facing those with disabilities to racial discrimination.


    Think about it as segregation. People with disabilities are still segregated in our society. And it's wrong. It's wrong morally, but it's wrong — and it's wrong economically, and it's wrong in compliance with the Americans With Disabilities Act.

    So, I think we need to have a federal determination that that person has that federally protected right.


    Diane Rowland studies Medicaid spending as the executive vice president of the Kaiser Family Foundation. She says most states have begun to move in the right direction, but often they find they are constrained by limited resources.

  • DIANE ROWLAND, Kaiser Family Foundation:

    There was also an escape clause that was part of the Olmstead decision that said that budgetary pressures at the state level could be taken into account in developing the plans for moving forward.

    So you have always had this tension between what is right, what is a right of individuals, and whether the state has the fiscal capacity and implements it in the fullest form that it was intended.


    Yet another hurdle, a big chunk of the funding for those with disabilities comes from state Medicaid programs.


    It leaves very serious variations across the states. And depending on where you live, your options may be very different, which is one of the harsh realities of the way the Medicaid program operates in the states. And it also leaves people with disabilities who want to leave an institution needing a strong advocate to help get them out.


    Despite the slow progress, Jennifer Mathis of the Bazelon Center says the Department of Justice is stepping up its role in ensuring compliance.


    During this administration, the Justice Department really made this issue a priority. I think that states are starting to see the integration mandate in a different light then they did, say, seven years ago, where I think there wasn't a lot of law. There were many fewer lawsuits.


    Senator Harkin insists it will take more than lawsuits, possibly new legislation with stronger enforcement. But he says public attitudes about people with disabilities have to change, too.


    We are one accident away, one illness away from being disabled. We — those who are not disabled, we have to start thinking, would we want to be institutionalized if that accident happened to us? And I will tell you, you ask anybody that, and they say, no, no, they don't want that.

    Well, how about making sure we don't have it for people who are disabled right now?


    However long it takes, Ricardo Thornton says he will continue to advocate for change.


    I feel that everyone should be given an opportunity. It's time for institutions to close. It's time for new things to happen. This house here is a blessing to us. I got a wife. I love her. And I have a son. And I'm seeing him grow in his family. And so I'm really enjoying life and want to see other people enjoy life.


    Thornton says a big part of enjoying life is his work at the library, adding, he has no plans to retire any time soon.