How COVID-19 Long Haulers Could Change the U.S. Disability Benefits System

When COVID-19 began spreading in the U.S. in March 2020, McKale Santin was working at a nursing home in Burlington, Vermont. She and her coworkers didn’t yet know how deadly the virus would become, but she remembers feeling nervous as the first patients got sick and she was asked to examine them with only a surgical mask, not the more protective N95 mask that she wore to test for conditions like tuberculosis.

One day, a patient pulled down her own mask to sneeze while Santin was conducting a respiratory assessment. Soon after, the woman became one of Vermont’s first people to die from COVID-19—and Santin fell ill. The 33-year-old nurse developed a deep, burning cough, and a fever so intense she would sweat through her bed sheets for weeks.

Sixteen months later, she is still suffering from debilitating symptoms. Formerly a competitive cyclist and rock climber, Santin now has a difficult time climbing the stairs to her apartment, constantly feels fatigued, often loses her balance due to numbness in her feet, has swollen joints, and experiences brain fog. “So much in my life is different now,” she says. “It’s really slow progress. It almost feels like learning how to work your body again.”

Santin is one of a growing number of so-called long-haulers—people whose symptoms linger many weeks or months after their initial case of COVID-19. Researchers estimate between 10% and 30% of COVID-19 patients develop long-term symptoms, though these can vary widely in their severity and how or when they appear. The U.S. National Institutes of Health has launched an initiative to study “Long COVID,” post-COVID clinics have popped up around the country and support groups are helping patients share their experiences. But for some long-haulers, the persistent symptoms have prevented them from returning to work full-time or at all, so they’re turning to a government system that’s supposed to help: Social Security disability benefits.

While it’s not clear precisely how many new people will need these benefits, if 10% of the 34 million Americans who have had COVID-19 applied for disability, that would mean 3.4 million applicants—which doesn’t include spouses or children who might be eligible as well. Even if just a fraction of those long-haulers or their families apply for disability insurance, it could overwhelm the system, which currently supports 8.1 million disabled workers and 1.4 million of their family members.

It’s already a vulnerable moment for the Social Security Administration (SSA). After successive administrations have ignored the looming retirement trust fund issues, the SSA has seen its budget cut dramatically in the last 10 years, even as its number of beneficiaries grew by 22%. It has closed 67 offices around the country since 2010 and shrunk its call center staff, resulting in more busy signals, longer wait times and fewer calls answered according to a report by the SSA Inspector General in May 2020.

Even in normal times, the process for getting disability benefits is extremely stringent and hard to navigate, advocates say. But the system is particularly ill-equipped to handle COVID long-haulers, who experience a wide range of symptoms that defy easy documentation and often evolve in ways medical providers don’t yet understand.

With the first long-haulers already seeking help, disability advocates are hoping that instead of millions of sick Americans getting stymied by bureaucracy and a struggling agency getting pushed to its breaking point, this can be a moment for reform. Advocates are urging the Social Security Administration to prepare for a coming wave of applicants, update its policies and issue guidance related to COVID-19 to better serve this mysterious and suffering population.

“COVID long haulers represent the largest influx of new entrants to the disability community in modern history,” says Rebecca Vallas, a senior fellow at The Century Foundation and a former disability lawyer. “There have been a few key moments in history, and this is one of them, where we have not only the opportunity but the urgent imperative, to wake up and realize which policies are incredibly long overdue for change.”

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In the meantime, benefits applications can languish for more than a year while the applicants struggle to live and pay their bills in uncertainty. If they try to work during this time, many worry that effort can be used against them. Wait times for hearings vary by office but can be up to 16 months in some parts of the country, according to SSA data. The backlog had been declining before the pandemic, but with pent-up demand from the last year and the likely influx of long haulers, wait times are expected to rise again.

“It is a tremendously difficult time for claimants,” says Stacy Cloyd, director of policy and administrative advocacy at the National Organization of Social Security Claimants’ Representatives. “People sometimes lose their homes. People see their health decline, both because of the mental stress and because of a lack of access to health care during that time. It is a tremendous amount of stress on disability claimants and on their families.”