The terrible toll of COVID-19 on people with intellectual disabilities

The terrible toll of COVID-19 

on people with intellectual disabilities

Wendy Ross, MD 

April 20, 2021

Patients with intellectual disabilities are six times more likely to die from COVID-19 than other people. An expert weighs in on how we must improve their care both during the pandemic and down the road.

Editor's note: The opinions expressed by the author do not necessarily reflect the opinions of the AAMC or its members. 

Sara*, 22, was doing well until COVID-19 hit. She was working at a café where most of the employees, like her, have an intellectual disability. She’d gotten good at making lattes and had just created a video resume for a Starbucks job. She enjoyed living with her parents in a suburb of Philadelphia and participating in a local program designed to boost independence.

But COVID-19 has created particular obstacles for Sara, who has difficulty communicating, processing information, and adapting to new situations. Some of her therapists have stopped coming to her house, and those who come wear masks that make her feel disconnected from them. She also dislikes how hot her mask feels and how often people remind her to fix it when it slips below her nose.

Then matters got worse. Even though she was careful, Sara contracted COVID-19 and spiked a fever of 104 degrees. Once hospitalized, she struggled to explain how sick she felt. Her doctors spoke very quickly, and by the time she sorted out the questions, they had stopped waiting for her answers. She was confused about why she got moved from one room to another, and she desperately missed her parents, who could not visit her because of COVID-19 precautions.

Sara’s is a dismaying story and, unfortunately, it is not an outlier. I know this well from my experience as director of the Center for Autism and Neurodiversity at Jefferson Health in Philadelphia and from decades working to help create accessible care for all people.

Approximately 6.5 million people in the United States have an intellectual disability. That means they have an IQ score below 70 and other cognitive limitations that affect their communication, social, and self-care skills. COVID-19 has certainly complicated their existence — but it also has ended their lives at tragic rates.

Consider this disturbing statistic: Having an intellectual disability was the highest independent risk factor for contracting COVID-19, controlling for race, ethnicity, and other variables. It was higher even than age or heart or lung problems, according to a recent paper I co-authored. Also, having an intellectual disability was second only to age for COVID-19-related deaths. The paper — which reported on more than 64 million patients at hundreds of U.S. medical centers — found that those with intellectual disabilities were six times more likely to die from COVID-19 than other members of the population.

Some of the increased illness and death may be related to the nature of intellectual disabilities and the supports they entail. For example, people with intellectual disabilities more often live in group homes; use shared transportation; are exposed to people outside their households, including therapists and other providers; and struggle with precautions like mask-wearing.

But there are aspects of these uneven outcomes that raise serious questions about us as a medical community and as a society.

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