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Harkin marks 23rd anniversary of the Americans with Disabilities Act

Senator Tom Harkin
Senator Tom Harkin

by Tom Harkin –

This week, to commemorate the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA), we are celebrating amazing strides in expanding access and opportunities for people with disabilities. But let’s not overlook a glaring exception to this success story. More than 200,000 working-age Americans remain trapped in nursing homes and other institutions, separated from their families and communities, often against their wishes. This is a key finding of a year-long investigation by the Senate Committee on Health, Education, Labor, and Pensions, which I chair.

The confinement of working-age people with disabilities in institutions is a shameful holdover from the worst practices of the past. It persists despite the Supreme Court’s decision in Olmstead v. L.C., more than a decade ago, which ruled that the ADA requires individuals with disabilities to be integrated into the community rather than warehoused in nursing homes and other institutions.

The Supreme Court asserted that unnecessary segregation of people with disabilities is a violation of fundamental civil rights. But it is more—it is also a violation of the human spirit, and it denies our society the talents and gifts of citizens who are eager to contribute. Consider the testimony before my committee by Ricardo Thornton, who spent large parts of his childhood separated from his family: “In the institution, I didn’t get to think for myself. The staff thought for me and made all of my decisions. For a long time, no one expected anything of me. When I lived in the institution, no one would have believed that I could have the life I have today – married with a son and granddaughter, a good job for 35 years.”

Every person with a disability – and especially young men and women with their working lives still ahead of them – deserves the freedom and opportunity to strive for the American Dream, just as Ricardo Thornton did. The Supreme Court in Olmstead envisioned that states would use Medicaid funding to make this possible by providing appropriate long-term services and supports to individuals with disabilities through home and community-based services. But by 2010, only 12 states devoted more than half of their Medicaid long-term-care dollars to home and community-based services. And the number of working-age adults in nursing homes has actually increased by more than 30,000 over the last five years.

Why is this happening? The harsh reality is that there continues to be a perverse “institutional bias” created by Medicaid rules. Those rules require states to cover the cost of nursing facilities, but do not require coverage of most home and community-based services. This creates an incentive for states to spend Medicaid dollars on institutional care, despite the fact that multiple studies have proven that it is more cost-effective to provide the supports that enable people to live in the community.

When progress has occurred, too often it has been because the Department of Justice has taken action to force states to do more. Fourteen years after the landmark Olmstead decision, litigation should not be necessary to enforce the federally protected right to community living.

Unfortunately, many states continue to approach community living as a social welfare issue and not as a civil rights issue. This is a failure of vision on the part of many state leaders, who are only willing to expand access to community-based supports when they can cap the number of people eligible to receive the services.

How can we correct this injustice? First, states need to move more quickly to adopt programs created by the Affordable Care Act, like the Community First Choice option, that provide significant additional federal resources in exchange for requiring a state to serve all of the eligible populations in the community. We also need joint state and federal efforts to implement a national action plan to expand access to affordable, integrated, and accessible housing for people with disabilities.

Second, Congress needs to act. The ADA should be amended to clarify that every individual who is eligible for long-term services and supports has a federally protected right to a real choice in where they will receive these services and supports—whether in an institution or in the community. In addition, Congress needs to end the institutional bias in the Medicaid program by requiring every state that participates in the program to pay for home and community-based services for those who are eligible, just as every state is required to pay for nursing facilities for people with significant disabilities.

Let’s celebrate the anniversary of the ADA by redoubling our efforts to give people with disabilities who remain in institutions a chance to experience the same dignity and freedom – the same shot at the American Dream – as every other citizen.

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