PRB

WASHINGTON—Progress in extending the life expectancy of U.S. adults living with intellectual and development disabilities (IDD) could be erased by the disproportionate impact of COVID-19 on this community, according to new research. While adults with IDD still live significantly shorter lives than adults without IDD, the gap in age at death between these groups was narrowing before the pandemic. Researchers fear that recent data showing that adults with IDD were more likely to die from COVID-19 could roll back pre-pandemic gains in closing the gap in the age at death between adults with and without these disabilities.

Among adults diagnosed with COVID-19 in 2020, those with IDD were 2.6 times more likely to die than those without IDD, according to data from 11 U.S. states and the District of Columbia. Death rates were also consistently higher for people with IDD living in congregate residential settings and receiving round-the-clock nursing services.

The findings, reported by PRB, are part of research led by Scott D. Landes, associate professor of sociology and faculty associate at the Aging Studies Institute at Syracuse University, with support from the National Institute on Aging at the National Institutes of Health.

“Adults with IDD may die at younger ages, but we should not accept this trend as a fait accompli,” said Landes. “Evidence of rising age at death indicates that people with IDD could live longer with improvements in the quality of and access to health care. It should not be assumed that people with these lifelong disabilities are unhealthy.”

Between 2008 and 2017, the average age at death rose more for adults living with IDD (which include intellectual disabilities, Down syndrome, and cerebral palsy) than for adults without IDD, narrowing the gap between the two groups by about two years.

Possible reasons why people with IDD face an elevated risk of death from COVID-19 include a greater likelihood of living in group residential settings, a higher prevalence of pre-existing conditions (especially respiratory diseases) and health care inequities, Landes says.

The findings also highlighted geographic trends and racial/ethnic disparities. Adults with IDD tend to live longer in Midwestern and Northeastern states, while their average ages at death tend to be lower in the South and Southwest. The data also showed wide gaps in average age at death between non-Hispanic white adults with IDD and their peers in other racial/ethnic groups, which were most pronounced among those with cerebral palsy.

Landes argues that the wide variation in average age at death by state and the shrinking gap between adults with and without IDD suggest there is room for improvement. He points to several policy and program changes that could improve longevity for adults with IDD:

• Protect adults with IDD who live in group settings similarly to nursing home residents.
• Increase federal and state pay scales for caregivers for adults with IDD.
• Better prepare physicians to care for people with IDD.
• Revise policies for reporting on death certificates to help identify preventable deaths.

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