COFAR blog

As the nation celebrates the life and judicial legacy of the late U.S. Supreme Court Justice Ruth Bader Ginsburg, we would like to recognize and set the record straight about her major contribution in one particularly vital case to the rights of persons with cognitive disabilities.

Ginsburg wrote the majority opinion in Olmstead v. L.C., which has been characterized as the most important civil rights decision for people with disabilities in our country’s history. It may have certainly been that, but not, as is usually claimed, because it held that “unjustified isolation (in institutions) is properly regarded as discrimination based on disability.”

That statement is only half the holding of Olmstead. There was another major element of Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t.

As our national affiliate, the VOR, has pointed out, Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

In other words, the greatness of Ginsburg’s contribution to the rights of the disabled was that her decision was all about choice. It provides a choice between community-based care and institutional care to persons with cognitive disabilities.

In announcing the Olmstead decision on June 22, 1999, Ginsburg stated that that the answer was “a qualified yes” to the question whether the Americans with Disabilities Act (ADA) “…may sometimes require a state to place persons with mental disabilities in community settings rather than in state institutions.”

The key word here was “qualified.” Ginsburg’s majority opinion held:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

The majority decision included a reference to amicus brief submitted by VOR, which stated that:

Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.

Decision has been misinterpreted

Despite those clear statements, Olmstead has continuously been misinterpreted by policy makers, administrators, and even governmental agencies as requiring the closure of all remaining state-run congregate care facilities in the country and privatizing all remaining residential care. What these advocates have done is to take the choice out of it.

The U.S. Department of Justice’s Civil Rights Division, for instance, has mistitled its technical assistance website, “Olmstead: Community Integration for Everyone.” (my emphasis). That is simply not true. Olmstead clearly implied that community integration isn’t for everyone.

In line with this misinterpretation, the DoJ has for years filed lawsuits around the country to close state-run care facilities, whether the residents and their families and guardians have opposed those closures or not. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by VOR.

While the DoJ has not filed such a suit against the State of Massachusetts, that may be because the state closed four out of six developmental centers that were in operation in the state as of 2014.  Olmstead, however, has been used as a justification in Massachusetts and other states for closing sheltered workshops, as Massachusetts did as of 2016 over the objections of many of the participants and their families.

Those acts and outcomes are not consistent with the plain language of Olmstead regarding the importance of the individual’s personal choice. Nevertheless, facility closure advocates consistently cite Olmstead as justifying their actions.

Community-based care was appropriate for original plaintiffs

The Olmstead lawsuit was brought on behalf of Lois Curtis and Elaine Wilson of Georgia, who both had diagnoses of mental health conditions and intellectual disabilities, according to a website created by attorneys with the Atlanta Legal Aid Society, who represented the women in the case.

Curtis and Wilson had asked the state of Georgia to help them get treatment in the community so that they would not have to live in a mental hospital.  According to the Atlanta attorneys, the doctors who treated Curtis and Wilson agreed that they were capable of living in the community with appropriate supports. However, both women had been waiting for years for their community-based supports to be established.

Thus, the original plaintiffs in the Olmstead case satisfied at least two of the three conditions that Ginsburg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsburg recognized that might not be true of everyone in institutional care.

Olmstead wrongly used to justify continuing privatization of DDS services

The Olmstead decision is based on regulations in the ADA that stipulate that public entities should provide services and programs in “the most integrated setting appropriate to the needs” of persons with disabilities.

In Massachusetts, administrations have long contended that the most integrated settings exist in the form of community-based group homes, the majority of which are run by corporate providers that receive state funding.

The problem with this view is that there have been countless examples of group homes that offer residents little opportunity for community integration. Yet the argument that group homes are more integrated than developmental centers is ingrained among policy makers, journalists, and others. This has made it accepted wisdom that all state-run congregate care facilities should be closed — an outcome that will ultimately lead to complete privatization of care.

That appears to be the goal of federal agencies such as the Centers for Medicare and Medicaid Services (CMS), which has issued regulations and provided billions of dollars in grants intended to boost the privatized group home system around the country.

On September 23, for instance, CMS announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. As a CMS press release put it, this funding “will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing.”

But while this outcome is termed a choice, the closure of the institutions will actually eliminate the choice that Ginsburg articulated in Olmstead. The VOR amicus brief, as noted, stated that on a case-by-case basis, the most integrated setting may be an institution.

The Disability Integration Act of 2019 would further erode Olmstead choice

Unfortunately, the notion that community-based care is the only appropriate option for people with cognitive disabilities is so ingrained and pervasive that the entire Massachusetts congressional delegation signed onto a bill last year, which would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

The bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would potentially threaten the Wrentham Developmental and Hogan Regional centers in Massachusetts, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

The legislation calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). As such, the bill does not comply with the choice provision in Olmstead.

We have contacted the members of the members of the state’s congressional delegation to urge them to support a change in the language of the bill to respect the choice of individuals, families, and guardians either to get into or to remain in congregate care facilities.

Given that the two versions noted above of this bill are still pending in House and Senate committees in Congress, we plan to remind the members of the Massachusetts delegation of the legacy and words of Ruth Bader Ginsburg.

In 1999, Justice Ginsburg endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity. Now at the time of her passing, we think it is important to remember and reflect on that.