By Steve Suroviec, President & CEO
In June of 1999, the U.S. Supreme Court ruled in its Olmstead decision that unnecessary institutionalization violated the Americans with Disabilities Act (ADA). At the time, I was working in the Office of Policy Development at the Pennsylvania Department of Public Welfare (now called the Department of Human Services [DHS]) and the immediate and long-term importance of Olmstead became very apparent very quickly. Essentially, the court’s decision would impact how publicly-funded disability services were offered. In short, large public and private institutions would go out of favor, and instead people with disabilities would be offered supports and services in their homes and communities.
For intellectual disability services, the shift from institutions to community services had already started decades earlier, starting with the passage of the “MH/MR Act of 1966” (now called the MH/ID Act of 1966), which for the first time provided public funds for community services. And in 1971, the PARC Consent Decree for the first time in the country guaranteed a student-age child with an intellectual disability the right to a free and appropriate public education – the impact of which was that it halted the institutionalization of young children because, instead, they would finally have access to public education services and thus wouldn't need the “educational programming” of a state-run institution. Finally, the introduction of Medicaid “waivers” in the 1980s, which allowed state agencies like DHS to “waive” mandatory institutional services in their state Medicaid plan and instead use the same money to provide preferred and less costly home-based services, really took off during the 1990s, giving people with disabilities real community support options instead of facing life in an institutional setting.
All that said, despite the strides made during that 30-year period, in the mid to late 90s there were still far too many people with disabilities being forced to accept services in a state-run institution, nursing home, or private Intermediate Care Facility or receive no services at all. At that time, there was nothing really compelling state governments to shift from institutions to community services. Politics often slowed or stalled progress (e.g., other budget priorities, unions representing state center employees, and some family groups who wanted their adult sons and daughters to remain in the institution, etc.). But then Olmstead happened, and state governments had to make a change.
It’s now 2024, and most disability services are now provided in the community. We can thank Olmstead to a large degree for completing the paradigm shift. Yet, even in present day, there are still people with intellectual disabilities living in two state-run institutions (Ebensburg State Center and Selinsgrove State Center). And Olmstead cannot really help the folks who live there because a person cannot be forced to leave an institution if they affirmatively choose to stay, and since most who remain in those two centers have guardians (via PA’s guardianship statute), the decision to leave the institution rests with the guardian, not the institutionalized person. The sad reality seems to be that, at this point, the only way the people in Ebensburg and Selinsgrove will ever get to leave is if they pass away or the state Department of Human Services finally closes them for good.
Olmstead was a big deal in 1999 and it has since helped countless people with disabilities receive the kinds of services they really want and where they really want them, but more progress is possible. For more information about Olmstead and its impact on disability services, go to the Olmstead page on ADA.gov.
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