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Some people who survive COVID-19 have debilitating symptoms many months later. As scientists scramble to explain what is going on and how to help, disability advocates are also scrambling. They're trying to figure out whether these so-called long-haulers will qualify for disability benefits. Gabrielle Emanuel of member station GBH (ph) in Boston reports.
GABRIELLE EMANUEL, BYLINE: When COVID first appeared, Jodee Pineau-Chaisson was working as the director of social services for a nursing home in western Massachusetts. It wasn't long before her residents were getting sick.
JODEE PINEAU-CHAISSON: I was asked to go on to the COVID units to do FaceTime calls so they could say goodbye to their family members.
EMANUEL: She was scared, but she felt like she owed it to the residents. So at 55, with no preexisting conditions, she put on a mask and a white jumpsuit and she did it. Three days later, she had COVID. Now, it's been 10 months, and she's still dealing with devastating symptoms. She says she has memory problems, body pain, heart palpitations, depression, chronic fatigue.
PINEAU-CHAISSON: Sometimes it can even be hard to walk up the stairs to my bedroom.
EMANUEL: Pineau-Chaisson took 12 weeks off work under the Family and Medical Leave Act, FMLA. After that, she still wasn't well enough to return to work. And the nursing home let her go. So she got a neurological evaluation and sent in her application for Social Security disability insurance. That's the federal disability program that most workers pay into. And then if they are ever too disabled to work, they can apply to get monthly checks. But criteria are strict, and most applicants are denied.
PINEAU-CHAISSON: They said it could take two weeks to 10 months. And many times they'll deny you the first time.
LINDA LANDRY: I do think it's still an open question. It's still a little iffy about whether people will be able to qualify.
EMANUEL: That's Linda Landry, an attorney at the Disability Law Center in Massachusetts. She says whether or not long-haulers can qualify for disability benefits is a hot topic in the advocacy community. Landry says there are three things in general that you need to get benefits. You need evidence that the disability affects your ability to work. You need a medical diagnosis. And the disability has to last for a while.
LANDRY: That requires you to have had or be likely to have a condition that affects your ability to work for 12 consecutive months.
EMANUEL: Since COVID has barely existed that long, Landry says this may be hard to prove. Disability advocates are looking for the Social Security Administration to put out specialized guidance about COVID the way they have for applicants suffering from headaches or fibromyalgia. Congressman John Larson of Connecticut is one of the lawmakers who asked those in charge of the disability program to collaborate with scientists studying long-haulers.
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JOHN LARSON: What do we have to do to make sure that we're there for these individuals who, through no fault of their own, find themselves in this situation?
EMANUEL: Larson says there are a lot of unknowns, like whether long-haulers with debilitating symptoms will respond to treatment enough to return to work. And...
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LARSON: We don't know what that final number is going to be. When you look at the numbers, with more than 25 million being infected, not all 25 million are going to be long-haulers, but what percentage will be?
EMANUEL: In a statement, the Social Security Administration said the current disability policy rules are able to evaluate COVID cases. And they will look at their policies as the research evolves.
For NPR News, I'm Gabrielle Emanuel.
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