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Controversial U.S. Department of Justice memo offers support for Intermediate Care Facilities
A new legal memorandum from the U.S. Department of Justice signals a change in philosophy in the federal government toward supporting Intermediate Care Facilities (ICFs) for individuals with intellectual and developmental disabilities (I/DD), such as the Wrentham and Hogan centers in Massachusetts.
The memo, which was issued on June 18 by the DOJ’s Office of Legal Counsel, has ignited a firestorm of dissent among disability advocates who support the closures of ICFs. It has even generated concern among some supporters of ICFs who say the memo may nevertheless have gone too far in preventing community-based placements.
Overall, the DOJ memo appears to validate what we have said for years, which is that the 1999 Olmstead v. L.C. U.S. Supreme Court decision did not order states to close ICFs and place everyone in the community-based system of residential care.
We have argued that eligible individuals with I/DD have a federal right to ICF care; yet the state Department of Developmental Services (DDS) has blocked almost all admissions in recent years to the Wrentham and Hogan centers. As a result, those facilities are continuing to lose residents and are on a closure trajectory.
As we have maintained, DDS and other opponents of ICF care have misrepresented the Olmstead decision as ordering an end to all institutional care.
The DOJ memo argues that neither Title II of the federal Americans with Disabilities Act (ADA) nor Olmstead created or upheld a community “integration mandate,” and that Olmstead held that institutionalization is not discriminatory if it is justified by factors such as the individual’s needs and resource limitations in the community.
As the DOJ memo stated in its interpretation of Olmstead,
Before committing a patient with mental disabilities to an institution—or upon request for a transfer by a patient currently institutionalized—states should assess the appropriateness and feasibility of both institutional and community-based treatment options and make a decision based on a non-arbitrary rationale. (Our emphasis)
We support both the ICFs and the community-based system
We agree with the following statement made by our partner organization, The Saving Wrentham and Hogan Alliance, in a recent analysis of the DOJ memo:
We do not believe that congregate care is inherently superior to community-based living, or that families who choose Home and Community Based Services (HCBS) are making a wrong choice. We believe in choice — genuine, funded, legally secured choice — and we believe that choice is the mechanism through which quality in any service system is actually produced.
The problem is that Massachusetts and other states, inappropriately citing Olmstead, have been letting ICFs like Wrentham and Hogan slowly die by attrition. This threatens to eliminate a critical backstop for care in the overall DDS system.
The DOJ memo took note of the potential danger in eliminating congregate care by highlighting a claim by Justice Anthony Kennedy of a “dark side of deinstitutionalization.” Kennedy made the claim in a concurring opinion in Olmstead in which he wrote that “patients prematurely released from in-patient care frequently end up homeless or even incarcerated.”
In addition, we think the DOJ memo correctly criticized a previous longstanding practice of the Justice Department’s Civil Rights Division of using “its integration mandate and Olmstead to pressure states into discharging individuals from mental-health institutions.” We have long raised similar concerns. As we said in 2015, “The DOJ seems to have closed its eyes to the realities on the ground in continuing to file lawsuits around the country to close state-run care facilities.”
More recently, in December 2024, we wrote to U.S. Health and Human Services Secretary Robert F. Kennedy Jr., asking whether he would commit “to changing the direction in which HHS (the Department of Health and Human Services) and the DOJ have long been headed in furthering the runaway privatization of human services and the closures of state-run services for people with I/DD, including Intermediate Care Facilities.”
Concerns about the DOJ memo
Some advocates have argued that the DOJ memo has gone too far in its support of institutional care by interpreting Olmstead in a way that may make it more difficult for people with I/DD to access community services. It has been suggested that the memo has set an overly high bar for community services because the memo interprets Olmstead as stating that institutional care is discriminatory only if it is solely based on a person’s disability and is not necessarily discriminatory if it is based on the person’s needs.
As we understand it, the concern is that the DOJ is now interpreting Olmstead in a way that could make it more likely that persons with certain needs will be placed in institutions even if they want to be in the community.
At least some of that concern centers around the DOJ memo’s recommendation to rescind a regulation under the ADA which requires states to move institutionalized patients to “the most integrated setting appropriate to the needs of qualified individuals with disabilities.” Many advocates are concerned that rescinding this regulation will remove any impetus a state may have to place clients with I/DD in integrated settings.
While we share that concern, we would note that the DOJ memo states, “Before committing a patient with mental disabilities to an institution—or upon request for a transfer by a patient currently institutionalized—states should assess the appropriateness and feasibility of both institutional and community-based treatment options and make a decision based on a non-arbitrary rationale.” (Our emphasis)
This statement in the memo appears to demonstrate an even-handedness in assessing the appropriateness of institutional and community-based care.
The three-part test
We do recognize that there is some additional disagreement among advocates with the DOJ memo’s conclusion that Olmstead did not establish clear criteria for what justifies institutional versus community placement. There appears to be legitimate debate over that claim in the memo — particularly over the memo’s analysis of the three-part test suggested by Justice Ruth Bader Ginsburg in Olmstead for requiring placement of an individual in the community.
Ginsburg wrote that community placement is required when (1) an individual’s “treatment professionals determine that such placement is appropriate,” (2) that individual “do[es] not oppose such treatment,” and (3) “the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.”
The DOJ memo stated that Ginsburg’s three-part test was approved only by a plurality and not a majority of the Court, and “thus, Olmstead did not conclusively resolve which justifications a state may offer in defense of its treatment choices—it held only that institutionalization must be ‘justified.’”
While many advocates contend the ADA regulations do conclusively establish the justifications needed for institutional care, we would note that the DOJ memo does go on to state that a majority of the Court did agree that the three-part test is “relevant” in justifying institutional placement. As the memo stated:
The majority opinion (in Olmstead) certainly references “the reasonable assessments of [a state’s] professionals” and patient “desire” as relevant to the question of whether institutionalization—that is, the provision of care in an in-patient setting, typically over the medium or long term—is justified in a given case…But not even the Olmstead plurality held that Title II makes maximal integration obligatory based on these factors alone.
The DOJ memo further stated that,
Indeed, the majority explained that it offered these factors (three-part test) to ’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.’ Read in this light, the opinion permits treatment in an institution based on professional assessment and patient consent. It does not say that these factors are the only acceptable justifications.
A recognition of history
The proponents of complete deinstitutionalization are overlooking the history of residential care in Massachusetts and throughout the country of people with I/DD since the 1980s. In particular, those proponents are missing the role played in Massachusetts by the late U.S. District Court Judge Joseph Tauro in overseeing the landmark litigation — Ricci v. Okin — which brought about significant improvements in the care and conditions at those facilities.
Tauro noted in his 1993 disengagement order from the case that both the major capital and staffing improvements to the facilities and a program of community placements had “taken people with mental retardation from the snake pit, human warehouse environment of two decades ago, to the point where Massachusetts now has a system of care and habilitation that is probably second to none anywhere in the world.”
Ironically, it is the community system has now become the new warehouse system for thousands of people with I/DD. We hear countless accounts of abuse, neglect, and poor conditions in group homes. This is happening while the executives of corporate residential provider agencies make exorbitant salaries and pay their direct care workers low wages and provide them with inadequate training.
The main danger isn’t that people with I/DD will be forced into institutional care, but that the community-based system has never had the staffing, expertise, or oversight necessary to replace the institutional system entirely. As we have seen in case after case, group homes cannot handle clients with the most severe and profound levels of I/DD and the most complex medical problems. That is why the ICFs remain so critically important.
In the final analysis, we would agree that we shouldn’t put all of our faith and focus on the DOJ memo in continuing to advocate for the preservation of ICFs. But we can use the memo’s conclusion as one more argument in our quiver in support of the assertion that there is a right to ICF-level care in Massachusetts and elsewhere.
Those arguments asserting that right can also be found in the Medicaid statute (42 U.S.C., § 1396a(a) (8)), which states that if a state includes an ICF in its Medicaid Plan, it must provide that service promptly to all eligible individuals. In addition, the right to ICF care is found in the Boulet v. Cellucci federal court decision (107 F. Supp. 2d 61 (D. Mass. 2000), and in the Medicaid regulations, 42 C.F.R. § 441.302(d), which explicitly require the choice of either institutional or HCBS care.
All of these are arguments we can bring if we do file or join in a lawsuit or as we continue to make our case to the Legislature that ICFs should be preserved and open their doors to persons who need and desire that level of care.
Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled
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.