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People with intellectual disabilities are helping providers improve the vaccination experience

Aubrey Whelan, The Philadelphia Inquirer on

Published in Health & Fitness

PHILADELPHIA — When Natasha Black learned that she was eligible to get a COVID-19 vaccine, she said she was excited — and hopeful that daily life might finally get back to normal.

Black, a member of a self-advocacy group for people with intellectual disabilities, had spent the year away from family, friends, and work. Isolated in her group home in the Pennsylvania suburbs, she missed being able to take walks, chat with neighbors, play a game of pickup soccer.

"I was staying at home every day — we couldn't do nothing," said Black, who knew she needed to be especially careful not to get coronavirus. "I was worried. I was bored. I had some hard times," she said.

People with intellectual disabilities are at much higher risk of contracting COVID-19 than the general population, but most were not recommend for higher priority for vaccination by the Centers for Disease Control and Prevention. (Some states did prioritize people with intellectual disabilities, and advocates campaigned for higher prioritization in others.)

A study published last month by Thomas Jefferson University researchers that looked at more than 64 million patients found that having an intellectual disability was the "strongest independent risk factor" for contracting COVID-19.

People with intellectual disabilities were also more likely to die from the virus. Old age was the only risk factor more connected with death from COVID-19, the study found. What's more, intellectually disabled people who were hospitalized with the virus were six times more likely to die.

 

There are a few reasons why intellectual disabilities can make people more vulnerable, said Wendy Ross, a physician, director of Jefferson Health's Center for Autism and Neurodiversity, and one of the study's authors.

But people living in communal settings like skilled nursing facilities, or suffering from other high-risk health issues are not the only members of the ID community at higher risk of the virus, she said, since the study also controlled for people in those categories.

Some people with ID have sensory issues that make it harder to wear masks for long periods of time, Ross said. Others who live at home may have therapists and other support staff stopping by, which may expose them to the virus. Many are more likely to use public transportation to get around, another route of exposure.

But whatever the reasons behind the heightened risk, Ross said, the study showed it was imperative to vaccinate patients in the Philadelphia region with intellectual disabilities.

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