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COVID-19 death rate higher for people with intellectual and developmental disabilities

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The COVID-19 death rate for people with intellectual and developmental disabilities (IDD) is higher than the general population in several states across the U.S., according to a new study published in Disability and Health Journal.

The research team that conducted the study analyzed data from 12 U.S. jurisdictions: Arizona, California, Connecticut, Illinois, Louisiana, Maryland, New Jersey, Oregon, Pennsylvania, Virginia, Washington and Washington, D.C.

The death rates were higher in all jurisdictions for those with IDD who live in congregate settings such as residential group homes. The results for people with IDD who do not live in congregate settings were mixed depending on the state, with case-fatality rates higher, lower or similar to the general population.

The study, “COVID-19 Case-Fatality Disparities among People with Intellectual and Developmental Disabilities: Evidence from 12 US Jurisdictions,” was published May 12 in Disability and Health Journal.

A previous study from June 2020 by members of this research team found that the death rate for people with IDD who live in congregate settings in New York State was also higher than the general population.

“The results from these studies underscore the increased COVID-19 risk that people with IDD are facing across the U.S.,” said researcher Scott Landes. “Though we are at a point where it appears that things are improving, it is important to understand that challenges still exist for some people with IDD. Though the vaccine is now officially open to all adults, there are multiple reports of people with IDD experiencing barriers to vaccination.”

The research team for the most recent study includes Landes, an 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; Dr. Margaret Turk, Distinguished Service Professor of Physical Medicine and Rehabilitation at SUNY Upstate Medical Center in Syracuse, N.Y.; and David A. Ervin, CEO of the Jewish Foundation for Group Homes in Rockville, Md.

In the most recent study, the researchers compared COVID-19 case-fatality rates among people with IDD in the 11 states and District of Columbia because those jurisdictions publicly report that data. To determine if those with IDD were dying at a higher rate than the general population, the researchers analyzed cumulative data reported from the start of the pandemic through April 13, 2021, and compared the IDD data from the 12 jurisdictions to the cumulative COVID-19 data compiled by the Center for Systems Science and Engineering at Johns Hopkins University.

To develop effective short-term and long-term public health interventions that address COVID-19 risks for those with IDD, the researchers say all states will need to report COVID-19 outcomes for this population.

“The findings of this study emphasize the need to ensure, No. 1, immediate and unfettered access to vaccines for all people with IDD, whether living in a congregate setting, family home or their own home; and No. 2, the ongoing need for states to begin or improve their reporting of COVID-19 outcomes for people with IDD,” Landes said.

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