Department of Justice Misuses Research by Persons with Disabilities to Justify Their Segregation

Last month, the U.S. Department of Justice’s Office of Legal Counsel (OLC) released a memo that advances a vanishingly narrow reading of states’ longstanding legal duty to serve persons with disabilities in community-based settings, rather than in segregated institutions. Fortunately, the memo does not change federal law. It does, however, send a strong signal that the federal government will look the other way should states feel compelled  to pare back home and community-based services that persons with disabilities rely on to meet basic needs. Under pressure to make up for $1 trillion in cuts to federal assistance programs, cash-strapped states may be tempted to cut these services, putting hundreds of thousands at risk of institutionalization, or worse.

At best, the OLC memo presents a novel legal theory that boldly reimagines copious negative precedent and contrary agency practice. (The memo itself acknowledges as much, recognizing that its revisionist interpretation of Olmstead v. L.C. “is out of step with the common understanding of that decision within the federal courts.”) Without the law on its side, rather than sound legal analysis, the OLC relies on cherry-picking, innuendo, and mischaracterization.

As an example of the lengths to which the OLC goes in search of support for its theory, on Page 28 it cites a research paper titled “Did I Take My Medication Today? Understanding Medication Self-Management for Adults with Intellectual Disabilities Through Participatory Research.” The memo cites this paper in support of the proposition that “mentally disabled patients [are] unable or unwilling to take necessary medication without the regular supervision that is only available in an institutional setting.” This characterization could hardly be farther from the truth. We would know; two of this post’s authors co-wrote the paper in question, in addition to designing and conducting the underlying study it describes.

Notwithstanding the OLC’s pretension, our research paper demonstrated that people with intellectual and/or developmental disabilities (IDD) living in the community well understood their prescribed medications and the management strategies they had in place. Specifically, we found that the adults with IDD we interviewed in our study “had an overall good understanding of their medication and medical conditions.” We also found that the adults with IDD we interviewed had developed effective strategies for navigating systematic barriers that can make medication management challenging, such as the complex names of medication being difficult to remember, inaccessible medication labels and information sheets, and frequent changes in medication shape and color. 

As our paper makes clear, these issues are out of the control of individuals with IDD. Our paper does make recommendations for addressing systematic barriers to medication self-management to better support people with IDD, so that they can continue to live well in their communities. But our paper does not indicate that the persistence of environmental barriers can reasonably be understood to mean that people with IDD are categorically incapable of overcoming those barriers. To the contrary, the adults with IDD we interviewed ably leaned on various formal and informal sources of support to do so.

Writing for the majority of the U.S. Supreme Court in Olmstead v. L.C., Justice Ginsburg named “two evident judgments”: that the institutionalization of people with disabilities “perpetuates unwarranted assumptions that [they] are incapable or unworthy of participating in community life” and that “institutional confinement severely diminishes individuals’ everyday life activities.” Empirical studies before and after Olmstead have borne out these judgments: people with IDD both can and do live more fulfilling lives in the community compared to institutions.

The OLC’s mischaracterization of our findings is doubly worrying because it threatens to erase disability experience and knowledge. Our research study was grounded in inclusive research principles: People with lived experiences were active contributors to all parts of the research process — from applying for funding to collecting and analyzing the data to disseminating our findings. Consistent with these principles, the researchers with IDD who formed part of our study team were paid for their time and in recognition of their expertise for working on the project. Our inclusive methods were designed to ensure that our research and its contributions to the evidence base could be accessible to people with IDD, as well as their families and supporters. 

Increasingly, inclusive research methods are correcting the historic exclusion of people with IDD from formal research (not to mention the numerous instances of researchers harming people with IDD in the name of research). Inclusive research projects like ours demonstrate that people with IDD can be critical thinkers and problem solvers, and meaningfully engage in research that can foster real change. Indeed, inclusive research helps to challenge negative attitudes and stereotypes about people with IDD that have historically justified the kinds of unequal treatment the OLC would allow. 

Inclusive research methods are also critical because people with IDD have long been marginalized or underrepresented in the design of laws, policies, and programs that affect how they live their lives. At their best, laws, policies, and programs meant to benefit people with IDD are informed by and based on empirical research. Because research can and often does inform policy, inclusive research methods represent an important and powerful way that people with disabilities can influence policymaking. 

As researchers, we also know that we cannot always control how our research is used. That said, when we started our study on medication management, we hoped to help others understand about the experiences of medication self-management for people with IDD living in the community so as to develop interventions and awareness that could address the environmental barriers we identified. We did not imagine our research findings would be misconstrued in the interest of advancing policy aims that run counter not only to our findings, but also to the vast body of empirical research in which our study sits that overwhelmingly demonstrates the benefits of community living for adults with IDD.

So, we know we cannot control what policymakers do with our research. What we can do, however, is the same thing that self-advocates across the world have done whenever they see signs of exclusion. It’s the same thing that Justice Ginsburg did on behalf of the Court in Olmstead itself: speak up for the evident judgments we know to be true. Institutionalization harms — not helps — persons with disabilities, and persons with disabilities are more than capable and worthy of full participation in community life.