US map made of many people with empty space in the center that resembles a single spiky corona virion.

The Institutionalization Missing Data Problem

By Doron Dorfman and Scott Landes

One of the most important lessons from the ongoing COVID-19 pandemic needs to be about health surveillance of marginalized health populations — indeed, “who counts depends on who is counted.”

As disability scholars who use data and empirical tools in our work, we want to remind decision makers that advancing just law and policy depends on the systematic collection of accurate data. Without such data, our laws and policies will be fundamentally incomplete.

Scholars have expressed concern for years that the U.S. does not engage in adequate data collection regarding the prevalence of intellectual and developmental disabilities (IDD), as well as the social and health outcomes of this population.

People with IDD are a marginalized health population and often experience poorer access to health care services, worse health outcomes, and much earlier age at death than the general population. During the pandemic, multiple studies have demonstrated that people in the U.S. with IDD are more likely to be diagnosed with and die from the virus, especially when residing in congregate group homes.

Despite these troubling trends, efforts to systematically monitor the health experiences and outcomes of one of the most marginalized health populations in the U.S. are woefully inadequate. This deficiency stems, in part, from the widespread institutionalization of people with disabilities.

By the late nineteenth century, North American public policy made use of large-scale isolated institutions, such as nursing homes, asylums, boarding homes, prisons and jails, psychiatric hospitals, and group homes to provide services for those labeled as having disabilities. The rationales for institutionalization were eugenic ideology and social control: protecting people with disabilities and protecting society from this group.

In the 1970s, at the same historical moment of the rise of the independent living and disability rights movements, American audiences began to reckon with what disability scholar Liat Ben-Moshe termed the “institution-industrial complex,” when the media and the courts uncovered the hellish conditions in those institutions. In early 1972, a local New York news station broadcast an exposé by journalist Geraldo Rivera on Staten Island’s Willowbrook State School, then the world largest institution for people with IDD. “I can show you what it looked like and what it sounded like, but I can never show you how it smelled and the horrible conditions,” Rivera famously said in that broadcast that exposed the neglect and abuse in “human warehouses,” where residents were even used as human subjects in ethically questionable medical experiments.

Institutions keep people with disabilities far from sight and out of mind. As history has shown, lack of transparency and inadequate surveillance will lead to horrific outcomes and death. While the historic 1999 Supreme Court decision Olmstead v. L.C poured meaning into the integration mandate of Title II to the Americans with Disabilities Act by determining that undue institutionalization qualifies as discrimination, eventually catalyzing the closure of large-scale institutions like Willowbrook, it did not abolish the practice of institutionalization altogether. It is estimated that between 2.6 to 4 million Americans with IDD reside in congregate settings including residential group homes, which are not typically classified as “institutions,” but in many states can have up to 15 residents. Additionally, the Olmstead decision did not deal with what we call the institutionalization missing data problem, or the insufficient, piecemeal attempts at monitoring outcomes for people with IDD.

Individuals who receive formal IDD services may have some data collected on their well-being and health, depending on their state of residence, specific provider, and type of service received. But there is no effort to date to standardize this data collection across the U.S., and it is often faltering. For example, while local school systems often have information on students enrolled in special education courses while they are in school, post-graduation from these programs, there is no organized effort to continue monitoring outcomes for people with IDD. This is unlike in other developed countries such as the U.K., which operates a health register for people with IDD.

Further, there is no data collected on people with IDD who are not receiving services. This has led to what has been termed “the forgotten generation” of people with IDD who are not receiving services and of whom we have very little to no information.

This data gap had serious and sometimes fatal implications for people with IDD during the COVID-19 pandemic.

Experts warned at the beginning of the pandemic that people with IDD might experience higher rates of severe outcomes, due to the disproportionate percentage of the population that lived in congregate settings, differential rates of pre-existing conditions, and the lack of prioritization of this population within the public health care system. And, in fact, evidence was available from as early as June 2020 that COVID-19 morbidity and mortality was elevated among people with IDD. However, the U.S. Centers for Disease Control and Prevention (CDC) did not add IDD to the list of conditions associated with severe COVID-19 outcomes until February of 2022. Though the CDC has not publicly commented on this delay, it is likely due to the fact that adequate data was not being collected on this population during the pandemic.

It is important to understand that the few studies on the effects of COVID in people with IDD were based upon data that was either collected by IDD providers (who knew that states would either not collect the necessary data on COVID-19 outcomes, or if collected, would not publicly share the data) or by U.S. jurisdictions. Tellingly, only 12 of the 51 US jurisdictions collected and shared data on COVID-19 outcomes for people with IDD during the first year of the pandemic. Though the U.S. Department of Health and Human Services (HHS) oversees the funding of IDD services in the U.S., and despite the plea of Senators Murray, Hassan, and Warren, the agency has made no effort to collect data on COVID-19 outcomes among those receiving IDD services.

In essence, the timely public health warning of more severe outcomes for people with IDD by the CDC, which may have prevented unnecessary COVID-19 deaths, did not occur because the federal and state public health system failed to collect data on this population.

We urge legislators and policy makers to fashion legislation requiring federal (e.g., HHS) and state agencies involved in providing services for people with IDD, and federal agencies overseeing U.S. public health policy (e.g., CDC) to collect and share health data about people with IDD and other disabilities. We are aware that this would be a long-term process. But the wait has been too long and likely resulted in unnecessary deaths of disabled Americans during the pandemic. It is imperative that efforts to enact “Disability Data Justice” begin now, to curtail the harms experienced by people with IDD during the pandemic, and to prevent future failures of this nature.

Doron Dorfman is an Associate Professor at Seton Hall Law School. His research and teaching focuses on disability law, health law, torts, property, insurance law, employment discrimination law, law and psychology, and family law.

Scott Landes is an Associate Professor of Sociology in the Maxwell School of Citizenship and Public Affairs and a Faculty Associate in the Aging Studies Institute at Syracuse University. He specializes in the sociology of disability, medical sociology, and aging. 

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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