The Importance of Framing Federal Mental Health Policy within a Disability Rights Framework

Vol. 42 No. 4

By

Jennifer Mathis is director of policy and legal advocacy at the Bazelon Center for Mental Health Law.


the Human brainThe last eight years brought significant advances for people with psychiatric disabilities as a result of the Obama administration’s enforcement of disability rights laws—particularly the “integration mandate” of the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C., 527 U.S. 581 (1999)—and its promulgation of new federal regulations and policy pronouncements expanding opportunities for people with disabilities to participate as full members of society. Specifically, these federal advances provided unprecedented opportunities for people with psychiatric disabilities to live in their own homes and communities, work in competitive integrated employment, be educated in regular classrooms, and receive services in integrated settings. These efforts were all part of a broader strategy to improve the lives of people with disabilities rather than a strategy focused specifically on mental health. Yet, they had a tremendous impact on people with psychiatric disabilities and revolutionized societal expectations for these individuals—particularly for people with the most significant psychiatric disabilities. 

By contrast, policy work that focuses exclusively on “mental health” tends to look very different. Rather than advancing choice, autonomy, independence, and the ability to participate in everyday community life, mental health policy has overwhelmingly focused on clinical issues such as access to treatment and symptom reduction. While such goals are not inherently problematic, they reflect a very limited vision for what the lives of individuals with psychiatric disabilities should look like. Rather than aiming at full participation in society, these goals largely aim at improving people’s clinical outcomes and reducing the number of times that they go to the hospital. Furthermore, many mental health policy initiatives have been grounded in an unfounded association of psychiatric disability with violence and have consequently featured coercive measures that make it harder, not easier, for people to participate in their communities and live full lives.

It is unclear to what extent the Trump administration will continue to pursue the disability rights initiatives undertaken by the Obama administration. But to ensure meaningful improvements in the lives of people with psychiatric disabilities, it is essential that the government approach mental health from a disability rights perspective. 

How the Disability Rights for Individuals with Psychiatric Disabilities Have Advanced

By 2009, when the Obama administration began its assertive enforcement of Olmstead and the ADA’s integration mandate, private litigants had begun to achieve some important successes in Olmstead cases. For example, thousands of individuals with psychiatric disabilities won a trial in a case challenging their needless segregation in institutional adult homes due to the state of New York’s failure to make supported housing available to them. The trial court’s decision was later reversed on standing grounds, Disability Advocates, Inc. v. New York Coalition for Quality Assisted Living, Inc., 675 F.3d 149 (2d Cir. 2012), but the plaintiffs ultimately reached a settlement with the state to resolve class action claims based largely on the same facts. (The Department of Justice (DOJ) also brought claims against the state and resolved these claims as part of the same settlement.) Similar cases resulted in settlements involving individuals with psychiatric disabilities in New Jersey state psychiatric hospitals, individuals with intellectual and developmental disabilities in Massachusetts nursing homes, and individuals with mental and/or physical disabilities in a San Francisco nursing home. 

The integration mandate took on new life, however, with the involvement of the DOJ. The DOJ stepped up its enforcement of Olmstead in 2009 with its intervention in the New York adult homes case and its issuance of a findings letter concluding that Georgia was violating Olmstead by needlessly segregating thousands of individuals in its state psychiatric hospitals (the DOJ had previously focused its investigation only on institutional conditions in Georgia state hospitals). The following year, the DOJ entered a settlement agreement with Georgia that broke new ground by being the first of the DOJ’s settlements to require a state to develop significant new community service capacity in order to comply with Olmstead

The DOJ went on to conduct Olmstead investigations in states across the country, file briefs supporting plaintiffs in Olmstead cases, conduct its own litigation, and enter settlement agreements with numerous states, including settlements with Delaware (involving individuals in state psychiatric hospitals), North Carolina (involving residents of adult care homes), New York (involving residents of adult homes), and New Hampshire (involving individuals in a state psychiatric hospital and a state-operated psychiatric nursing facility), that provided opportunities for tens of thousands of individuals with psychiatric disabilities to transition from institutional settings to their own homes and communities. 

The DOJ’s Olmstead enforcement activities were not limited to residential services. Settlements with Oregon and Rhode Island provided opportunities for people with intellectual and developmental disabilities in sheltered workshops and segregated day programs to receive instead supported employment services to help them secure and maintain jobs. The DOJ's guidance documents clarified that Olmstead similarly requires states to ensure that people with psychiatric disabilities have opportunities to receive supported employment services as an alternative to segregated day treatment programs. See Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C., https://www.ada.gov/olmstead/q&a_olmstead.pdf (specifying that Olmstead applies to settings that provide for daytime activities primarily with other individuals with disabilities and that Olmstead remedies include the provision of supported employment services); Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments’ Employment Service Systems for Individuals with Disabilities. The DOJ also began enforcing Olmstead in the context of education, filing suit against Georgia for violating the ADA and Olmstead by failing to provide children with behavior-related disabilities the services they need to succeed in integrated general education classrooms and instead needlessly placing them in segregated schools and segregated classrooms. See https://www.ada.gov/olmstead/documents/gnets_complaint.html

Other federal agencies joined this effort, promulgating rules that further opened doors for people with psychiatric disabilities to live, work, and engage in their communities in the same ways as others. The Department of Housing and Urban Development (HUD) issued a guidance document clarifying how Olmstead applies to programs receiving HUD funding and to HUD’s own activities. Among other things, the guidance stressed the need for integrated housing options such as “scattered-site apartments providing permanent supportive housing, tenant-based rental assistance that enables individuals with disabilities to lease housing in integrated developments, and apartments for individuals with various disabilities scattered throughout public and multifamily housing developments.” Statement of the Department of Housing and Urban Development on the Role of Housing in Accomplishing the Goals of Olmstead, at 6, http://portal.hud.gov/hudportal/documents/huddoc?idOlmsteadGuidnc060413.pdf. This marked a significant departure from HUD’s historic focus on funding units in segregated buildings exclusively occupied by people with disabilities. 

HUD also issued a number of regulations and tools for state and local government entities engaged in fair housing planning to ensure that they meet federal obligations to “affirmatively further fair housing.” For the first time, HUD specified that the fair housing planning process must specifically address the needs of people with disabilities for housing assistance that would enable them to avoid needless institutionalization. Historically, the need for housing resources to enable people with disabilities to avoid institutionalization had scarcely been considered in most of these planning processes, making such housing less available. 

In addition, the Centers for Medicare and Medicaid Services issued a rule designed to ensure that scarce Medicaid dollars allocated for “home and community-based services” would in fact be used for services in living settings and day settings that were truly home-based or community-based. 79 Fed. Reg. 2948 et seq. (Jan. 16, 2014). The rule clarified that certain settings would never be considered home and community-based, and others would be so considered only if they met certain requirements—requirements designed to ensure that people with disabilities have sufficient opportunities to interact with people without disabilities, engage in community activities of their choosing, and exercise choice, autonomy, and independence. 

New rules expanded employment opportunities for people with disabilities—including people with psychiatric disabilities. The Department of Labor (DOL) issued a rule that put more meat on the bones of decades-old requirements for large federal contractors to use affirmative action to increase their employment of people with disabilities—setting a goal of having 7 percent of each part of their workforce be employees with disabilities. 78 Fed. Reg. 58682 et seq. (Sept. 24, 2013). The Equal Employment Opportunity Commission (EEOC) issued a similar rule to implement the requirement that federal agencies use affirmative action to improve their employment of people with disabilities—setting goals that 12 percent of the workforce would be people with disabilities and 2 percent be people with certain types of significant disabilities (including “significant psychiatric disorders”). The EEOC’s rule also required federal agencies to provide personal assistance services to individuals with significant disabilities when needed for work, as long as doing so would not be an undue burden. 82 Fed. Reg. 654 et seq. (Jan. 3, 2017). New DOL and Department of Education rules under the Workforce Innovation and Opportunity Act (WIOA) expanded opportunities for people with disabilities to secure competitive integrated employment. 81 Fed. Reg. 55562 et seq., 55791 et seq. (Aug. 19, 2016). President Obama’s Fair Pay and Safe Workplaces Executive Order 13673, issued in July 2014, required federal contractors to disclose past violations of various labor and employment laws, including disability rights laws, when bidding on large federal contracts—making it easier for the government to take these violations into account when awarding contracts. 

Together, these federal actions reflect dramatic changes in our expectations for people with psychiatric disabilities and in the opportunities available to them. While much work remains to be done to implement these requirements on a wider scale and ensure that their promise becomes a reality for more people, these federal disability rights initiatives are among the most important developments for people with psychiatric disabilities in decades. 

Mental Health Policy Initiatives

In stark contrast to the disability rights initiatives described above, federal policy initiatives focusing specifically on mental health have, in recent years, largely revolved around the narrow theme of “access to treatment.” While the ability to receive needed services is certainly important to the larger goals of full participation as a member of one’s community and exercising choice and autonomy, securing mental health treatment to reduce symptoms or avoid hospitalization is a far cry from what our end goal should be. Moreover, the word “treatment” typically connotes clinical services, without regard to the constellation of services, such as supported employment, supported housing, and peer support services that are equally critical, if not more critical, to successful community living.

Indeed, access to treatment had been the focus of many federal mental health efforts until President George W. Bush’s New Freedom Commission on Mental Health laid out a far more ambitious vision in 2003—the goal of transforming service systems to facilitate “recovery.” This goal encompassed not simply addressing clinical issues and managing symptoms, but enabling people to cope successfully with life’s challenges and build resilience, and to promote community living and meaningful choice. While the commission’s focus on recovery and community living offered a vision for mental health policy that was aligned with the goals of disability rights policy, subsequent federal mental health policy initiatives did not follow suit.

For example, the one White House mental health policy event that has convened in the last eight years, in June 2016, focused on increasing access to clinical services and integrating physical and mental health care, and scarcely discussed the need to expand the availability of employment services, housing supports, peer support services, or the goal of community living—despite the administration’s important work to enforce the ADA’s integration mandate for people with psychiatric disabilities. 

Congressional efforts to address mental health have similarly focused on clinical treatment. Further, the most significant of these efforts over the last several years actually framed mental health treatment as a solution to gun violence and conveyed a strong (and unfounded) message that most people with mental illness are violent. These efforts affirmatively undermined the goal of promoting community integration. 

For example, the Helping Families in Mental Health Crisis Act, first introduced by Representative Tim Murphy at the end of 2013, reintroduced in 2015, and passed in 2016, was brought forth as a response to the Newtown, Connecticut, school shooting. Congressman Murphy began many speeches about the bill with recitations of mass shooters with psychiatric disabilities and asserted that his bill’s changes to mental health treatment would prevent such shootings, because “it’s not about what’s in your hand but rather what’s in your mind.” Early versions of the bill contained many controversial provisions, including gutting the primary legal advocacy program for people with psychiatric disabilities, which Representative Murphy asserted helped individuals reject treatment; removing privacy rights; lowering criteria for involuntary civil commitment; shifting the focus of the Substance Abuse and Mental Health Services Administration from recovery toward a more medicalized approach; and expanding involuntary outpatient treatment. 

A companion bill in the Senate introduced by Senators Murphy and Cassidy contained similar, though less draconian, provisions and was also discussed largely as a violence prevention measure; that bill was overtaken by a later Senate bill without the focus on coercive treatment, which was combined with Representative Murphy’s bill and passed. While the final bill was stripped of the most coercive provisions, focusing instead on promoting interagency coordination and authorizing a number of small grant programs with the potential to improve service delivery, it did little to expand opportunities for people with psychiatric disabilities to have a meaningful life in the community.

The Future of Mental Health Policy

It is difficult to gauge how the current administration will address mental health policy. Concerns have been raised about some of the positions embraced by new cabinet members—most significantly, the desire of the new U.S. Department of Health and Human Services secretary to repeal the Affordable Care Act, which brought the most dramatic expansion of coverage of community-based mental health services (including certain housing and employment supports) in decades, and the new attorney general’s past opposition to community integration efforts in Alabama. The DOJ’s work to implement Olmstead and the ADA has been so deep and extensive, however, that it would be difficult for the current department leadership to head in a radically different direction. In any event, however the new administration chooses to structure its efforts to advance mental health policy and law, experience suggests that these efforts will be most effective and meaningful if they proceed as part of a larger disability rights initiative rather than as a standalone effort to address the needs of people with psychiatric disabilities. 

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