When COVID-19 first arrived in the U.S., Jodee Pineau-Chaisson was working as the director of social services for a nursing home in western Massachusetts. By the middle of April, residents at the Center for Extended Care in Amherst were getting sick.
In early May, Pineau-Chaisson was tapped for a particular duty: "I was asked to go onto the COVID-19 units to do FaceTime calls so they could say goodbye to their family members," she recalls. "I was very scared."
She was worried about contracting the virus but also felt like she owed it to her residents. So, at 55 years old and with no preexisting conditions, Pineau-Chaisson put on an N95 mask and a white jumpsuit and she entered the units to help. Three days later, she had COVID-19.
It has now been almost 10 months since Pineau-Chaisson got sick, yet she is still dealing with a series of devastating ailments. She says she has memory problems, body pain, heart palpitations, depression and chronic fatigue. "Sometimes it can even be hard to walk up the stairs to my bedroom," she says.
Pineau-Chaisson is a so-called long-hauler. These are people who survive COVID-19 but have symptoms — sometimes debilitating symptoms — many months later. As scientists scramble to explain what is going on and figure out how to help, disability advocates are also scrambling: They are trying to figure out whether long-haulers will qualify for disability benefits.
Long-Haulers and Disability Benefits
COVID-19 survivors are the newest group to approach the federal government for disability coverage, and it's unclear whether they will be considered eligible.
Linda Landry, an attorney at the Disability Law Center in Massachusetts, says it seems clear that long-haulers qualify for protections under the Americans with Disability Act, which would afford them accommodations for things like housing and accessing government services. But the question of whether long-haulers will be eligible for federal disability benefits is still being debated.
Landry says there are three things, in general, that you need to qualify for benefits: First, a medical diagnosis. Second, evidence that the condition affects your ability to work. And third, the disability has to last for a while.
The requirement is that "you have to have had or are likely to have a condition that affects your ability to work for 12 consecutive months," Landry says.
Since COVID-19 has scarcely existed as a recognized disease for that long, this may be hard to prove, Landry says. She would like to see the SSA put out specialized guidance about COVID-19, similar to guidance the agency has released in the past for applicants suffering from debilitating headaches or fibromyalgia.
In a statement, the SSA told NPR that the current disability policy rules should be sufficient for evaluating COVID-related applicants, though the agency did not rule out taking additional action in the future. "Researchers are still learning about the disease and we will continue to look at our policies as research evolves," the statement said.