Long COVID Sufferers Are Seeking Disability Benefits. Will They Change the System?

For Chantelle James, a registered nurse who lives in the suburbs of Austin, Texas, the push to keep worker’s compensation and receive short-term disability benefits has been demoralizing.

In August 2020, the 43-year-old tested positive for COVID-19 and was experiencing chest tightness, coughing, congestion, rashes and balance issues. Now, months later, she still can’t fully find her footing.

“Anytime I got up, I would just kind of fall down, like I couldn’t walk straight,” James says.

A few days after her initial positive test, James, who works for health care provider Ascension Seton at a psychiatric hospital in Austin, says she requested worker’s compensation, which she received upon approval by third-party claims administrator Sedgwick, along with paid time off. Yet her symptoms persisted, even as she says she was expected to return to work without restrictions.

Per emergency room summaries provided by James and reviewed by U.S. News, James visited a hospital in August and September, twice in October, and again in November for ailments that included chest pain, rapid heart rate, dehydration and muscle spasms – all of which she says started only after she got COVID-19. But in November, a nurse practitioner at Ascension Seton Occupational Health Clinic, whom James says had to weigh in on whether she should continue receiving benefits, instead wrote that she was ready to return to work.

Afterward, James says she continued to get sick at work, was denied further worker’s compensation and is now trying to seek short-term disability.

It’s still unclear precisely how many people have the condition now called long COVID, which is characterized by persistent symptoms of illness weeks or months after an initial case of COVID-19. Concerns have warranted an initiative by the National Institutes of Health aimed at identifying its underlying causes and treatments, while support groups and clinics have cropped up to help the multitude of people suffering from it.

But for some long-haulers, including James, their symptoms have made it difficult to work full time or at all, leading them to pursue disability benefits, including worker’s compensation or Social Security disability payments. And challenges exist when it comes to accessing and navigating a system some may be encountering for the first time.

“I think part of what’s happening is a new category of folks with disabilities that are not always easy to quantify and proved are running against a culture, within the Social Security Administration, that is generally not easy to navigate for people that have disabilities that are not easy to quantify or prove,” says Andy Imparato, executive director of Disability Rights California, a nonprofit legal services organization.

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There are already some signs of how long COVID may change the disability services landscape. For instance, Stop The Wait – a coalition of disability, health and aging organizations – is reupping a fight to eliminate a two-year waiting period for Medicare coverage and five-month waiting period for Social Security Disability Insurance for many people with disabilities.

Advocates say the pandemic adds a new urgency to their efforts. Eve Hill, a disability attorney and lead organizer for Stop The Wait, says the waiting periods are counterintuitive and costly.

“We’re really being short-sighted,” Hill says. “If we say, ‘Well, we want to save money by denying people benefits’ … giving people early benefits lets them pay health insurance premiums, or use Medicare and work on their health and recover and return to work. Delaying it makes their disabilities get worse, without treatment, or get more permanent and harder to recover from.”

A bipartisan effort in the last Congress, led by Republican Rep. Lloyd Doggett of Texas and Democratic Sen. Bob Casey of Pennsylvania, sought to eliminate the waiting periods, but the bicameral bills were never voted on. Congress has, however, eliminated the waiting periods for people with Lou Gehrig’s disease, or amyotrophic lateral sclerosis.

A spokesperson for Casey’s office says the senator plans to update his legislation and reintroduce it before the summer. Stop The Wait also posted an open letter to Congress, urging them to pick up the issue again.

“Many people with disabilities, including those caused by COVID-19, will be unable to return to work. Denying them access to their earned insurance benefits for five months and their healthcare for 24 months exacerbates these effects – leaving people with disabilities unable to pay COBRA or other health care premiums, rent, and other essential expenses, and forcing them onto welfare and Medicaid to survive,” the letter reads.

“The pandemic is forcing people out of their jobs,” Hill says. “Both because they’re getting COVID, or they’re getting long COVID.” She adds that people with disabilities may have lost their jobs completely during the pandemic, too, and that those who have long COVID may be navigating the disability system for the first time.

“I think people are going to be in really desperate circumstances, people who never thought of themselves as having a disability,” Hill says. The waiting periods could be a wake-up call for them as well as for Congress, she says

Stacy Cloyd, director of policy and administrative advocacy at the National Organization of Social Security Claimants’ Representatives, says Doggett and Casey both are planning to reintroduce the waiting-period legislation. She says her conversations with lawmakers on eliminating the delays have so far been positive, and there’s bipartisan interest in modernizing the Social Security Disability Insurance system.

She also points out that the Biden administration’s disability plan, unveiled on the campaign trail, includes working on legislation to eliminate the waiting periods.

“There are absolutely people who died during these waiting periods,” Cloyd says. She points to a 2020 Government Accountability Office report that found 109,725 individuals who appealed a decision about Social Security disability benefits died prior to receiving a final decision from fiscal 2008 through 2019.

“They die without seeing any of those benefits,” Cloyd says.