Study: People with IDD living in residential group homes more likely to die from COVID-19

Reviewed by Emily Henderson, B.Sc.Jun 25 2020

A new study published recently in ScienceDirect by researchers from Syracuse University and SUNY Upstate Medical University shows that people with intellectual and developmental disabilities (IDD) living in residential group homes are more likely to be diagnosed with COVID-19 and die from the virus than those without IDD.

According to the researchers, the disparity is likely related to a higher prevalence of comorbid diseases among those with IDD, and/or a higher percentage of people with IDD living in congregate residential settings.

Their study, "COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State," was published in the Disability and Health Journal. Utilizing data from the New York Disability Advocates (NYDA) and the New York State Department of Health COVID-19 Tracker, the study compared COVID-19 outcomes between 20,431 people with IDD who live in residential group homes in the state of New York to the overall outcomes for New York State.

The rates of COVID-19 diagnosis and death were substantially higher for people with IDD living in residential group homes. This may partly be due to many individuals in this population having pre-existing health conditions that are associated with more severe COVID-19 outcomes.

Scott Landes, researcher, associate professor of Sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs and a research affiliate for the Lerner Center for Public Health Promotion

"However, we are concerned that these severe outcomes may be more related to the current design of the IDD service system in the United States, in which states rely heavily on providing care in congregate settings with limited support and resources," Landes said. "This is proving deadly during the current pandemic."

The study was conducted by: Landes; two researchers from SUNY Upstate Medical Center in Syracuse, N.Y., Dr. Margaret Turk, SUNY Distinguished Service Professor of Physical Medicine & Rehabilitation, and Dr. Margaret Formica, associate professor of Public Health & Preventative Medicine and associate professor of urology; Katherine McDonald, professor and Chair of the Department of Public Health in the David B. Falk College of Sport and Human Dynamics at Syracuse University; and Dalton Stevens, a sociology PhD candidate at Syracuse University. Here is a more detailed look at their findings:

People with IDD living in residential group homes in New York State were at greater risk of severe COVID-19 outcomes:

* Case rates (a measure of the number of people diagnosed with COVID-19):

• o7,841 per 100,000 for people with IDD.

  o1,910 per 100,000 for New York State.

* Case-fatality (a measure of the proportion of death among those who contract the disease indicating disease severity):

• o15 percent for people with IDD.

  o 7.9 percent for New York State.

* Mortality rate (a measure of the rate of death from a disease among a total population indicating burden of deaths due to a specific disease):

• o1,175 per 100,000 for people with IDD.

  o151 per 100,000 for New York State.

The study also examined each of these COVID-19 outcomes across regions of New York State. The differences in cases and mortality rate were confirmed across all regions of the state. However, case-fatality rate was only higher for people with IDD in and around the New York City region.

"The results of this present study reinforce our initial study that showed higher case-fatality rates among people with IDD using the TriNetX COVID-19 Research Network platform," researcher Dr. Margaret Turk said. "People with IDD are a poorly recognized and vulnerable group that does not often receive adequate attention within society in general, and within our healthcare system in particular. Further research is needed to determine the possible effects that access to - or quality of - medical care has on COVID-19 outcomes for this group."

Although U.S. states have been collecting data on COVID-19 outcomes among people with IDD served by the residential group home system, very few have publicly shared any of this data, and those that have shared data have done so sparingly.

Due to the increased severity of COVID-19 outcomes among people with IDD found in this study, the authors conclude that: "In order for us to have a full accounting of COVID-19 on the IDD population, or other vulnerable populations living in congregate settings, it is imperative that the entities that provide services for or monitor any segment of this population begin to openly share all relevant data they have on COVID-19 outcomes among people with IDD."