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.”

‘No two patients are the same‘

Last summer, Santin tried to go back to work, first at a memory care facility and then in a primary care practice. But she was still fatigued, losing balance and unable to function like she could before. So when she had to stop working due to her health this spring, her doctors suggested she apply for Social Security disability benefits.

Social Security Disability Insurance is supposed to be there for Americans who have paid into it, protecting them from the risk that every person faces of an unexpected injury or sickness that prevents them from working. But the system is notoriously complex. The U.S. has some of the most stringent eligibility criteria for disability benefits among countries with advanced economies, according to the Organization for Economic Cooperation and Development. The application is lengthy and can take months to complete. Getting approved often requires multiple appeals, and waiting for each hearing can take months on its own. Even then, fewer than four in 10 applicants are granted benefits. “As someone with brain fog, if I didn’t have the connection with a social worker and the case manager to help me, I wouldn’t be able to complete the forms,” Santin says.

The laborious forms and appeals process aren’t the only impediments. To qualify for disability benefits from the SSA, an individual must show they have an impairment that prevents them from “substantial, gainful activity” that is expected to last at least 12 months or result in their death. But long haulers often don’t have the medical evidence needed to prove this, since many of them have barely been sick for 12 months and have the kinds of symptoms—fatigue, chronic pain, brain fog—that are difficult to capture with traditional screening tools, blood tests or imaging. Some symptoms can appear months after the initial infection, and doctors are still trying to figure out what causes them and how long they’ll last. “No two patients are the same,” says Dr. Noah Greenspan, a cardiovascular and pulmonary physical therapist who started a long-haul treatment clinic in New York early in the pandemic. “So a lot of people are having difficulty getting the right diagnostic tests, and then even getting care.”

Last June, Democratic Representatives John Larson of Connecticut, chair of the House Ways and Means Social Security Subcommittee, and Danny Davis of Illinois, chair of the Worker and Family Subcommittee, urged the Social Security Administration to work with the National Academies of Sciences, Engineering and Medicine (NASEM) to examine the long-term impact of COVID-19 on people’s ability to work. A spokesperson for the agency says it has been “regularly consulting” with NASEM “throughout the pandemic” and heard from experts on COVID-19 at a regularly scheduled National Disability Forum on Nov. 18. The spokesperson says SSA can evaluate COVID long haulers under its current rules, but, “Researchers are still learning about the disease and we will continue to look at our policies as research evolves.”

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.”

Starting to change

Long COVID patients could spur changes to the system, as their plight has given more urgency to advocates’ demands.

Stop the Wait, a coalition of disability and aging groups, is calling on Congress to eliminate official waiting periods built into the Social Security Disability Insurance program. After completing the application process, people have to wait five months for any benefits to begin and two years to receive Medicare coverage. “It’s a devastation both for the individuals and their families and for our economy, where people don’t have any money coming in, they can’t spend, they can’t contribute to the economy,” says Eve Hill, a disability lawyer and lead organizer of the campaign. It can also push people onto other government programs such as Medicaid, which states have to help pay for while the person is waiting for their federal benefits.

In 2019, Democratic Sen. Bob Casey of Pennsylvania and Democratic Rep. Lloyd Doggett of Texas introduced a bipartisan effort to get rid of the waiting periods. The bills were not voted on then, but a spokesperson for Casey’s office said he plans to re-introduce the legislation this year. Since then, President Joe Biden included the issue in his disability plan on the campaign trail, Congress eliminated the waiting periods for people with amyotrophic lateral sclerosis (ALS), and the Stop the Wait campaign wrote an open letter asking Congress to do so for others with disabilities too.

It’s not just waiting periods gaining attention in Washington. Groups like the Long COVID Alliance, Survivor Corps and Body Politic have come together to learn from how the government has handled other diseases such as fibromyalgia and chronic fatigue syndrome and advocate for new investments in research on long COVID. In April, the Senate Finance Committee held a hearing to examine the Social Security Administration’s customer service during the pandemic, and Senators from both parties said the agency needed to do more to simplify its applications, reach out to vulnerable communities and help eligible people apply for the benefits. To this end, Democratic Sen. Sherrod Brown of Ohio is working on legislation that would create a navigator program to help people apply for items like disability benefits or the Child Tax Credit, similar to the one used under the Affordable Care Act to connect people to health insurance.

But such improvements rely on the Social Security Administration having adequate funding to process claims properly. Biden’s 2022 budget request included a 10% boost to SSA funding, but that is still less than the agency itself said it needs to do its job effectively, notes Kathleen Romig, a senior analyst at the Center on Budget and Policy Priorities who used to work at the SSA. “Even if 100% of these [long COVID] claims are denied, you still have to decide them. And that’s really time consuming. And so it’s going to take a lot of staff time. And it’s going to take a lot of money. As a result, it’s going to put even more strain on this agency that’s already under a lot of strain,” she says.

However, Romig also notes that times of crisis are often when government programs get created or overhauled. After all, Social Security was created as part of the New Deal, the bold economic agenda President Franklin D. Roosevelt enacted as a way out of the Great Depression. “Social Security is something that was battle tested, in part because it was born out of such a similar circumstance,” she says. “Advocates see SSA’s main job now as making sure people have access to benefits after a period of some significant barriers to access.”

There are signs Biden may agree with that mission. He recently fired the Trump-appointed Social Security Commissioner Andrew Saul, who clashed with the agency’s workers during his tenure and had proposed a host of more stringent rules for disability beneficiaries. “I expect that with President Biden’s recent removal of former Commissioner Andrew Saul and appointment of Acting Commissioner Kilolo Kijakazi, SSA will be rededicating itself to ensuring that people can access the Social Security benefits they have earned and are eligible for, including by properly evaluating the long-term effects of COVID-19 on the ability to work,” Rep. Larson said in a statement to TIME.

There may be some progress in Washington, but in Vermont, Santin knows she still has a long road ahead. She is has been adapting to her new, more circumscribed life, but she says she feels lucky to have the support system of her doctors and case managers and is taking things one day at a time. “It’s wild,” she says, “the amount of work somebody with disabilities needs to put into the application for disability.”

Correction, July 21

The original version of this story misstated Greenspan’s title. He is a cardiovascular and pulmonary physical therapist, not a physician.