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

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.

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. Click here to read more.  

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