FILE – A nurse works on a computer while caring for a COVID-19 patient in Los Angeles. Hospital systems across the country are starting to charge patients for some of the messages they send to doctors, as doctors say they are increasingly spending time researching online inquiries, some of which are so complex they require a level of medical expertise normally required for a doctor’s appointment. (AP Photo/Jae C. Hong, File)
While it is well known that the COVID-19 pandemic has dramatically increased mortality rates among older adults, little attention has been paid to its impact on people with disabilities. A new study published in Health Affairs Scholar shows that the pandemic has had a devastating effect on people with disabilities.
Over the first two years of the pandemic, there were approximately 260,000 excess deaths among people with disabilities. These excess deaths accounted for 26% of all excess deaths in the US from the virus.
Patterns in the data suggest that people with disabilities have been at higher risk throughout the pandemic.
When the virus first hit New York City in the spring of 2020, the probability (or risk) of death for people with disabilities immediately soared. In April 2020, the death rate for people with disabilities in New York and the surrounding area was three times higher than it had been just a year earlier in April 2019. Strikingly, for people with disabilities residing in nursing homes or other institutions in the New York area, the risk of death was seven times higher in April 2020 than it had been a year earlier.
Additionally, across all regions of the United States, people with disabilities experienced significantly higher mortality rates during the winter of 2020-2021 and when the delta and omicron variants emerged in 2021.
The findings have important implications for how the United States responds to current and future health emergencies.
Although people with disabilities do not typically have a single disability, communication from the federal government (through the media) about COVID-19 and other viruses does not reflect this reality. Take, for example, this PBS report on CDC guidance on COVID-19 booster shots:
“[T]The CDC recommended vaccination for everyone aged 6 months and older, but urged people in high-risk groups, such as older adults and those with weakened immune systems, to get vaccinated as an added layer of protection against severe illness, hospitalization, and death.”
Many people with disabilities whose primary disability is mental or intellectual do not necessarily consider themselves immunocompromised, but they often have co-existing physical health conditions that are linked to a weakened immune system. Indeed, my research has found that people whose primary disability is mental (such as severe depression) are disproportionately more likely to die from COVID-19.
Governments need to start consistently using language that specifically warns people with disabilities about the significantly greater risk of serious outcomes from COVID-19 and other viruses, regardless of whether they have a primary disability.
In addition to improving the language of their communications, governments need to focus their communications directly on individuals, rather than assuming that general media messages will reach high-risk groups.
My research focuses on people who receive benefits from the Social Security Administration’s disability program. Why is that relevant? The Social Security Administration (SSA) has contact information for these individuals, including their mailing addresses. SSA is partnering with federal health agencies to provide objective information about vaccines and treatments in easy-to-understand language and can easily mail notifications to these individuals.
Direct mail communications are likely to be much more effective than general public communications via the internet and social media, and they may also be less polarizing than personality-driven communications, such as those used by political leaders to raise awareness of vaccines.
Beyond communication, the federal government must proactively embrace the recent official designation by the National Institutes of Health (NIH) that people with disabilities are a group with “health disparities,” a designation the NIH aims to encourage (and fund) research on people with disabilities.
In particular, the NIH designation is intended to promote research into how race, ethnicity, and socioeconomic status interact with disabilities to cause poor health outcomes, and the government can effectively advance this goal by simply releasing additional data to the research community.
For example, the SSA maintains two versions of its Disability Analysis File (DAF): an internal version and a public version. Both files contain a wealth of data examining the health status of people with documented disabilities, but only the internal version contains data about an individual’s race.
Why can’t researchers at universities, think tanks, and public policy organizations access the racial data that’s already been collected, which would surely generate a vast literature on race, disability, health, and public policy and help the United States prepare for future health emergencies?
Moreover, SSA’s programs include very large Social Security-based retirement and survivorship programs that serve older Americans, yet the agency produces very little public research data on these individuals.SSA should create something similar to the DAF for its programs that serve older adults.
Geriatric Analysis Files would be inexpensive for SSA to create because the underlying data already exists in the agency’s systems of record, and such a file would transform research on the older population in the U.S. Creation of such a file by SSA would also enable research on specific groups within the older population that have known health problems and are of great concern to Congress, such as those who reside in institutions and the very elderly.
Dr. David A. Weaver is an economist and retired federal employee who has written numerous studies on Social Security. His views do not necessarily reflect those of any organization.