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Opportunity Area 3:

School and Workplace Accommodations

Insight

When trying to work or go to school, many people with Long COVID and their caregivers are left to negotiate for accommodations on their own.

Once someone with Long COVID qualifies as disabled, under federal civil rights laws their workplace and educational setting must provide “reasonable modifications.” However, many workplaces and educational settings are unprepared for the collaborative process of figuring out what changes and adjustments can help someone continue to do their job and perform at school.
Many people with Long COVID are denied temporary or permanent work or school accommodations, which means they may have to reapply every few months, and struggle to meet performance standards at work or at school. They may decide they must quit or leave, and in some instances, they may even be fired. While not required, lacking a positive COVID-19 test or Long COVID diagnosis can make the request for accommodations even harder to legitimize.
Those with Long COVID symptoms but without an official diagnosis or positive COVID-19 test often find themselves, and their caregiver, if applicable, engaging in conversations of explanation, feeling the need to justify their situation in hopes of gaining understanding and empathy for their need for accommodations.
Children with Long COVID are reliant upon their parents or guardians, who may or may not have knowledge of Long COVID or the capacity to successfully advocate on their behalf.

Illustration of a student studying at a desk with a laptop.

“The disappointing thing is that despite being a very science and evidence-based school, our medical department refused to listen to me. They were like, ‘Oh, you are a one-off case. You are not of our concern.’”

—Shannon, college student, medical research intern, and person with Long COVID

“When I requested accommodations through both my primary care and my GI doctor, neither one of them was willing to sign any kind of ADA paperwork—even though I obviously have disabilities. In fact, my GI doctor said, ‘I don’t even know if you have any disabilities. Why would I fill this out?’ It’s always me pushing back and not getting anywhere.”

—Renee, health insurance agent, animal rights advocate, and person with Long COVID

“As a paramedic, there are really no accommodations for me. I have to be able to run into a burning building, no matter what. I can’t have cognitive dysfunction when I’m drawing up meds to distribute to somebody. So for these types of jobs, it is basically fireable because there are no types of accommodations for this. There needs to be better support for folks in this situation to find a new line of work entirely.”

—Amanda, Long COVID advocate, mother, and person with Long COVID

“I’m getting messages from people I know. One told me that one of her kids had COVID and just never bounced back. He can’t remember anything. He doesn’t have energy. She said, ‘I don’t know how to go about getting accommodations in school.’ And these are from educated people of privilege. They can’t figure it out or even know that such accommodations are available.”

—Emily, Long COVID advocate and person recovered from Long COVID