Twenty-Seven Years Ago Today By Jon Taylor

Twenty-Seven years ago today, Sue Jamieson, an attorney with the Atlanta Legal Aid Society, filed a lawsuit on behalf of Lois Curtis (and later added Elaine Wilson). Both Lois and Elaine possessed an intellectual disability and a mental health diagnosis, and at the time of the lawsuit, were trapped in a cycle that led in and out of the State of Georgia’s mental health hospitals. They would be admitted, their conditions would improve, and they would be discharged home. But once Lois and Elaine got home, they had no supports. Their conditions would deteriorate, they would be re-admitted to the hospital, and the cycle would begin again.

Even more frustrating for Lois and Elaine was that the doctors who treated them agreed that both women were fully capable of living at home with appropriate community supports. Those supports, known as Home and Community Based Services (HCBS), were not a new concept. HCBS were introduced in 1983 when Congress added section 1915 (c) to the Social Security Act. Section 1915 (c) gave States the option to receive a waiver from Medicaid rules governing institutional care. It gave States the flexibility to deliver long-term care services and supports to people in their home or community, rather than only in an institutional setting. But the wait for those Home and Community Based Supports (HCBS), was years long. So, for Lois, Elaine, and countless others, the cycle never stopped.

Four years later, Lois and Elaine’s case made it all the way to the Supreme Court. That case, Olmstead vs L.C., was decided in Lois and Elaine’s favor on June 22, 1999. Supreme Court Justice Ruth Bader Ginsberg, in her majority opinion announcement, stated:

“In sum, we conclude that Title II of the ADA requires States to provide community-based treatment for persons with mental disabilities, when the State’s treatment professionals have determined that such placement is appropriate, when the affected persons do not oppose such treatment, and when the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities.”

Olmstead made it clear that people with disabilities have a civil right to be a part of their communities. And they have the right to the Home and Community Based Services while doing so.

Of course, HCBS for all didn’t materialize overnight. The majority of States still have waitlists for services. And there is a serious shortage of workers to provide those essential supports and services. Those are topics I’ll cover over the next few weeks. But I wouldn’t be discussing anything without the actions of Lois Curtis or Elaine Wilson. All they wanted was to live at home, where they felt safe and comfortable. And if they needed support, it was available when they needed it, but on their terms. Just like the rest of us.