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Disability denied: Unable to work, COVID long haulers face barriers to benefits

This story first appeared on Capital & Main.

AfroLA’s Take

“To the extent that people are dealing with long COVID, people of color are going to face the same inequities they face in terms of accessing health care generally, in terms of potential treatments for long COVID,” Samantha Artiga, vice president and director of the Racial Equity and Health Policy Program at Kaiser Family Foundation, told Scientific American. Higher rates of no health insurance among people of color translates to increased difficulties accessing health care. And, a lack of data around race/ethnicity and COVID-19 means we don’t know who is necessarily receiving COVID treatments and from whom.

Marie, who left a corporate job in Missouri after contracting COVID in the first wave and then developing what came to be known as long COVID, received five months of short-term disability through her employer. It was “a life-saver,” she said. But in 2022, she caught COVID again, and this time it’s taken much longer to recover from the long COVID that followed. “I’m suffering fatigue, brain fog and post-exertional malaise where if I do any small thing it exhausts me.” 

Not knowing when or if she’ll be able to go back to work, Marie (who asked that her last name not be used for fear of reprisal from the Social Security Administration) began pursuing long term disability coverage and is also applying for disability coverage through Social Security. “[My lawyer] said, ‘Expect to be denied, especially because it’s long COVID,’” she said.

Marie and other COVID “long haulers” must navigate a disability claims system that was already difficult before the pandemic, with sometimes years-long wait times and no clear guidance on how to prove their disability. 

Long COVID has supercharged those problems for many by adding additional hurdles. Although the federal government has said that long COVID can be considered a disability under the Americans with Disabilities Act (ADA), the health care system doesn’t have a clear way to diagnose it. There is no single test to identify long COVID, and not having a positive test of the initial COVID infection can be a barrier to qualifying for disability, long haulers say.

For people suffering with a disabling condition, having to provide records proving they’re disabled is itself exhausting, Marie said. “It’s death by paperwork and for people with LC something like paperwork, as crazy as it sounds, can cause us to crash. With cognitive issues it’s so much harder to get through long forms.”

Mass disability, arduous disability claims process

Long COVID is a chronic illness that has been called a “mass disabling event” by Alba Azola, co- director of the Johns Hopkins Long COVID team. A 2022 CDC study estimated that 20% of adults 18-65 who recovered from an initial COVID infection experienced long COVID, which can last weeks, months or years, have varying degrees of severity and affect any organ in the body. People with mild initial infections, even those who were vaccinated, can suffer long COVID. Some do recover, but one study showed that after three months, “There was little evidence for decline [in symptom prevalence].” Long haulers have compared their condition to long-term conditions like myalgic encephalomyelitis (ME/CFS), lupus and rheumatoid arthritis. 

Two of the most common symptoms brought on as part of long COVID are post-exertional malaise and “brain fog,” a gentle term for cognitive dysfunction, possibly caused by the persistence of the virus in brain tissue. Both are, in addition to presenting big obstacles for someone filling out a mountain of paperwork, hard to prove, at least by the exacting standards of insurance companies and Social Security. 

As a result, people suffering from cognitive impairment, nervous-system dysfunction and vascular, respiratory and immune-system issues, to name a few of the more common symptoms of long COVID, can’t prove what they suffer from is long COVID or, sometimes, prove that they’re suffering at all. Part of the problem is that many long COVID symptoms, as defined by the federal Department of Health and Human Services, are real but vague, and can worsen, or improve, over time. 

The Social Security Administration (SSA) has a strict definition of disability: The condition must last at least a year, which can be difficult with long COVID, where some people appear to get better only to relapse. Benefits start five months after the government determines a person is qualified, but the wait to qualify is long and arduous, long haulers and their advocates say. 

report by the Center for Law and Social Policy notes the severe backlog of applications at SSA as a hindrance for long COVID applicants, and others. And it says medical providers’ knowledge gaps about long COVID are a hurdle as well: “Few providers know what tests need to be conducted to adequately document evidence of long COVID. Providers stick to basic tests that come back normal despite the presence of debilitating symptoms.”

“If you have something like a spinal condition, it will show up on an MRI, but if you have chronic fatigue, it’s harder to provide objective evidence.”

Claire Kennedy-Wilkins, attorney

The CDC estimates that more than 7% of American adults have long COVID, but there are no statistics on how many need disability coverage due to their conditions. Darren Lutz, a spokesman for the Social Security Administration, said in an email that “disability evaluations are based on functional limitations that affect an individual’s ability to work, not a diagnosis,” and that the agency has no data on how many cases flagged for COVID-19 were rejected.

Beryl Hudson, a disability advocate based in Georgia, agreed that functional limitations, not the diagnosis of long COVID, were more likely to make a favorable case for disability coverage. “A lot of long haulers are diagnosed with fibromyalgia and lung issues and a lot with lupus. That helps us with proving they are disabled instead of using that ‘COVID long hauler’ name.” 

One impairment that is almost universal in COVID long haulers, Hudson said, is brain fog, or cognitive impairment, which is not usually included in the medical records. “Proving [brain fog] comes with the testimony from the client. You can tell they are having a problem putting thoughts together and remembering words when talking to me or to the [Social Security] judge.” But by the time a client is able to make their case face to face with a judge, their claim has been rejected twice and they’ve been out of work for at least a year. 

Hudson, who advocates for people with all types of disability claims, said that 85% are rejected by Social Security on the first round, and about 65% on the first appeal, regardless of disability. What makes it challenging to prove many of the ailments under the long-COVID umbrella, she said, is that the syndrome is fairly new, and it has taken time for administrators and the medical community to understand it.

And unlike those with well-established disabilities, COVID long haulers have to jump through more hoops. According to Claire Kennedy-Wilkins, a lawyer at Springer Ayeni in San Leandro, California, insurance companies and Social Security require special tests and lengthy observations to demonstrate ongoing impairment.

“If you have something like a spinal condition, it will show up on an MRI, but if you have chronic fatigue, it’s harder to provide objective evidence,” she said. “How does that [primary care] physician observe fatigue in a short office visit? There are tests, like functional capacity evaluation, but they’re often not covered by insurance companies and it can be hard to find a qualified provider or specialist.”

Adding to long haulers’ woes is having to navigate an overburdened medical system and schedule timely appointments with specialists, if they can find one in-network — assuming they have insurance — for the required tests.

A growing pool of sufferers

Alexis Misko was another first wave COVID-19 sufferer. She was 33 when she got sick three years ago, and it became clear that she couldn’t perform her job duties as an occupational therapist in a Columbus, Ohio, hospital. “(I was) on my feet all day, with lots of multitasking and high-level executive functioning skills required,” she said in an email. Now she is unable to stand for more than a few minutes at a time, can walk only short distances, can’t sit up and do desk work beyond 30 minutes or so. “I can’t be on a computer, even if lying down, for long periods of time, and phone calls beyond 10-15 minutes are difficult.”

Because there are no effective therapies or treatments for long COVID, Misko said she has no expectation of ever recovering. But at least for the financial aspect of the ailment, she admits she is lucky: Having a working spouse meant she could avoid draining down her savings. And she was granted disability in a year and a half. “It normally takes most people much longer to get approved, and some never do,” she said. “Integral to this process was also being able to access and afford a specialist who could fill out the necessary paperwork in a detailed manner, something not everyone can,” she wrote.

The ending of public health precautions such as mask mandates has ensured that the virus will continue to infect more people, with many of them filing for disability.

The number of people waiting for long-term disability coverage, and exhausting their savings while they wait, can be expected to grow. According to a November report by the Department of Health and Human Services, as many as 23 million Americans suffer from long COVID. That pool is likely to expand, HHS said, “as COVID-19 continues to circulate.”  

Contrary to a common perception that COVID is “just a cold,” recent data showed 28% of people who had COVID reported new or worsened symptoms three months after an initial infection. And right now, according to wastewater analysis, the virus, as of April 2023, is circulating at a higher rate than at this time in 2021 or 2022. The ending of public health precautions such as mask mandates, even within medical facilities, has ensured that the virus will continue to infect more people, with many of them filing for disability.

Last month Congress voted to end the three-year COVID public health emergency. The Biden administration has pledged to help, but the promised help does not include making it easier for long haulers to recoup income lost when they were or are incapacitated. Two bills addressing the COVID crisis, the Care for Long COVID Act and the COVID-19 Long Haulers Act, which promised improved research, treatment options and other resources — but nothing to help long haulers with disability — died in Congress. Currently there is nothing proposed by the administration that would make the disability application process easier or faster for COVID long haulers.

Beryl Hudson gave one cause for hope: that the disability filing process, while never easy or fast for people with any chronic ailment, may become less of a burden for COVID long haulers over time. “I’ve seen how [Social Security] is progressing to see long COVID as a real thing. The medical community is doing the same, recognizing that this is not imaginary.” The flip side of this growing recognition is that long COVID, a chronic disorder from a preventable communicable virus, will continue to afflict more people. 

“I never thought I would have as many long hauler clients as I have, and I can see that increasing as time goes on until we get this virus under control. The average person on the street doesn’t know anything about COVID long haulers. They think they’ll get COVID for a few days and they’ll be OK. They don’t see it as a long-term risk.”

© Capital & Main

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