Ending Our Shameful Segregation of Persons with Disabilities

By Jason A. Frank, CELA, CAP

NAELA supports care in the community and the greatest amount of independence possible for persons of any age with disabilities.

Segregating persons with disabilities in nursing homes recently received national attention after the Department of Justice found that South Dakota violated their civil rights for this very reason.

Unfortunately, effectively warehousing persons with disabilities is an all too common phenomenon across the United States, not just South Dakota. For those involved and their families, it is nothing short of a tragedy.

Persons acquire disabilities for different reasons, some at birth, others due to an accident, and many from a chronic illness, such as Alzheimer’s or Multiple Sclerosis. Virtually all wish to remain at home, be a part of their community, and not institutionalized.

Many need help with getting out of bed, eating, or going to the bathroom. For those who require extensive long-term supports and services, it can be financially ruinous.

Medicaid provides the majority of these paid services once you qualify. But, the more than 50-year-old law mandates nursing home services and not home and community-based services (HCBS).

Rather, states provide HCBS through optional “waivers” of the Medicaid law, which requires that you be in a nursing home to receive services.

Care in the Community: The Unfinished Civil Right

A turning point came in 1999 when the Supreme Court recognized in Olmstead v. L.C. that the unjustified segregation of persons with disabilities constitutes discrimination under the Americans with Disabilities Act.

Since then, states have expanded home and community-based services: from 18 percent of dollars spent in 1995 to 51 percent in 2013. Importantly, coverage varies significantly by age, state, and the nature of the disability.

In truth, the rights of persons with disabilities to remain at home and in their communities has not yet been actualized.

For instance, my home state of Maryland has more than 25,000 individuals on a “waitlist” for HCBS. But the waitlist itself is a mirage. A miniscule number of people ever actually end up receiving these services without having to go into a nursing home first.

This is unacceptable.

As an Elder Law attorney, I am tired of witnessing far too many families break down in tears when I tell them there is nothing I can do to help them keep their loved one at home because the state does not provide access to HCBS in any meaningful sense.

The Disability Integration Act -- Legislation That Would Mandate Care in the Community

That’s why I am so excited about the Disability Integration Act, sponsored by Senate Minority Leader Chuck Schumer (D-NY). The legislation would clarify that HCBS is a civil right.

The legislation would mandate that public entities and insurers:
•    Give individuals the right to choose between HCBS or institutional care;
•    Cannot discriminate against persons with disabilities when providing HCBS;
•    Establish adequate payment structures for HCBS;
•    Inform persons with disabilities of their right to receive HCBS; and
•    Increase affordable and accessible housing options (applies only to public entities).

Hopefully with enough grassroots advocacy, this legislation will become law soon. Until then, far too many persons with disabilities will face segregation in nursing homes with only occasional victories through long, hard-fought litigation.

About the Author
Jason Frank, CELA, CAP, is co-chair of NAELA's Public Policy Committee. He is a member of the NAELA Board of Directors and is a NAELA Fellow.

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