It is well known that the COVID-19 pandemic dramatically increased mortality among persons of advanced age, but its effect on disabled persons has received little attention. In a new study published in “Health Affairs Scholar,” I show that the pandemic had a devastating impact on disabled persons.
There were nearly 260,000 excess deaths among persons with disabilities during the first two years of the pandemic. These excess deaths account for 26 percent of all excess deaths in America due to the virus.
Patterns in the data show persons with disabilities were at high risk throughout the pandemic.
The virus first hit New York City in the spring of 2020. The probability (or risk) of death for disabled persons jumped immediately. In April 2020, disabled persons in New York and surrounding areas were three times more likely to die than in April 2019 — just one year prior. For disabled persons in institutions in the New York area, such as nursing homes, the risk of death was, shockingly, seven times higher in April 2020 than it was one year prior.
In addition, across all geographic regions in the United States, persons with disabilities experienced very high mortality during the winter of 2020-2021 and when the Delta and Omicron variants emerged in 2021.
The findings from the study have important implications for how the United States handles current and future health emergencies.
Persons with disabilities do not typically have a single impairment and yet, the communications from the federal government (through the media) about COVID-19 and other viruses do not reflect this reality. Consider, for example, a PBS report about CDC guidance on COVID-19 booster shots:
“[T]he CDC recommended it for everyone ages 6 months or older but strongly urged people in high-risk groups, including older adults and people with compromised immune systems, to get that added layer of protection against severe illness, hospitalization and death.”
Many disabled persons whose main impairment is mental or intellectual do not necessarily think of themselves as having compromised immune systems, but they often have co-occurring physical health impairments that are associated with a weakened immune system. Indeed, in my study, I found individuals whose primary impairment was mental (such as severe depression) experienced extremely high mortality from COVID-19.
The government needs to begin a consistent use of language that specifically warns persons with disabilities, regardless of primary impairment, of the extreme risk of serious outcomes from COVID-19 and other viruses.
In addition to improving language in its communications, the government needs to target communications directly to individuals rather than assuming general messages using the media reach high-risk groups.
My study focused on persons receiving benefits from the Social Security Administration’s disability programs. Why is that relevant? The Social Security Administration (SSA) has contact information, including mailing addresses, of these individuals. SSA in partnership with federal health agencies can easily mail notices to these individuals providing them with objective information, using plain language, about vaccines and treatments.
Direct mail communication is likely to be far more effective than general communication to the public through the internet and social media. It is also likely to be less polarizing than personality-driven communication, such as when political leaders try to promote vaccine awareness.
Beyond communication, the federal government needs to vigorously embrace the recent, official designation by the National Institutes of Health (NIH) that persons with disabilities are a group with “health disparities.” The NIH designation is intended to promote (and fund) research on persons with disabilities.
In particular, the NIH designation seeks to generate research on the ways race, ethnicity and socioeconomic status interact with disability to produce poor health outcomes. The government can efficiently promote this goal by simply releasing additional data to the research community.
To illustrate, SSA maintains two separate versions of its Disability Analysis File (DAF): an internal version and a public-use version. Both files contain a rich set of data to study health outcomes among persons with documented disabilities, but only the internal version has data on the race of the person.
Why should researchers at universities, think tanks, and public policy organizations not have access to the already-collected race data? It would surely foster a large literature on race, disability, health and public policy that would help the United States prepare for future health emergencies.
In addition, SSA’s programs include the very large retirement and survivor programs under Social Security that serve aged Americans, but the agency produces very little publicly available research data on these individuals. SSA should create an analogue to the DAF for its programs that serve the aged.
An Aged Analysis File would be inexpensive for SSA to build because the underlying data already exists in the agency’s record systems, and such a file would transform research on America’s aged population. SSA building such a file would also allow for studies of specific groups within the aged population who have known health problems and are of great interest to Congress, including persons residing in institutions and persons who are of a very advanced age.
David A. Weaver, Ph.D., is an economist and retired federal employee who has authored a number of studies on the Social Security program. His views do not reflect the views of any organization.
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