COVID Long Haulers Could Change the Disability System | Healthiest Communities Health News

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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.

Chantelle James holds a certificate recognizing her as a finalist for an award for her work at Ascension Seton Shoal Creek Hospital, a psychiatric facility in Austin, Texas.(Montinique Monroe for USN&WR)

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.

For example, to receive disability payments through two major programs administered by the Social Security Administration, a person must be medically determined to have a physical or mental impairment that lasts or is expected to last at least 12 months and prevents them from substantial, gainful activity, generally defined by work activity and profits. Last June, Democratic U.S. Reps. John Larson of Connecticut – who chairs the House Ways and Means Social Security Subcommittee – and Danny Davis of Illinois, who chairs the Worker & Family Support Subcommittee, called on the Social Security Administration to collaborate with the National Academies of Sciences, Engineering, and Medicine on how to evaluate the long-term impact of COVID-19 on people’s ability to work, which SSA agreed to do.

“While I’m encouraged that SSA is moving forward with this examination of what needs to be done to support long haulers, I do not have confidence in Andrew Saul leading the agency,” Larson said in an emailed statement to U.S. News, referencing the Social Security Administration commissioner tapped by former President Donald Trump. “I will continue to push SSA and monitor their work to make sure we are supporting those most affected by COVID-19 who may need Social Security Disability.”

“I think for a lot of people with long COVID, they don’t know if they’re going to be able to work, they don’t know how much they’re going to be able to earn because they’re a new status,” Imparato says. He notes that physicians are also trying to figure the condition out; health care providers whom U.S. News has spoken with say symptoms of long-haulers are wide-ranging and not always the same for everyone, making the condition difficult to pinpoint under a single profile.

Photos: America’s Pandemic Toll

Additionally, Imparato says, the disability services system doesn’t make it easy for people to get benefits but also return to work. “A lot of people worry if they try to work it’s going to be used against them,” he says.

Taryn Williams, managing director for the Poverty to Prosperity Program at think tank the Center for American Progress, also says COVID-19 presents challenges to disability systems. Worker’s compensation, for instance, is paid to people who were injured while at work, which is more difficult to prove with an illness than a slip or fall.

In James’ case, after visiting the nurse practitioner in November, she says she was directed by Sedgwick, the third-party claims administrator, in February to a health care provider who wrote in a form reviewed by U.S. News that James “does not have a permanent impairment as result of a compensable injury.” The form signed by the provider said James would return to work without restrictions as of Feb. 9. That came just a month after a physician James regularly saw at Austin Regional Clinic noted James’ symptoms and that she was being seen at a separate post-COVID clinic in Houston. That physician also noted James had fainted at work twice in November in front of her managers.

“Based on her symptoms and customary job duties at her employment, I do not feel that she is ready to go back to work until further investigation,” the physician wrote in a letter on Jan. 7, adding that she could not determine a definitive date for when James should return to work.

Since the second physician said she could return to work in February, James has applied for short-term disability to take leave from work, which she says was initially denied by Sedgwick. She is now trying to appeal.

Ascension Seton, James’ employer, told U.S. News that it could not comment on any active claims and wrote in a statement: “The health and safety of our patients, associates and providers is our top priority. Any Ascension associate claims of a potential at-work exposure to COVID-19 are reviewed and reported appropriately based on Texas Department of Insurance rules.” Sedgwick did not respond to requests for comment by press time.

Williams says she has heard anecdotally of an increase in people seeking disability services due to long COVID, but there isn’t data yet on just how many. Still, she and Imparato say the moment represents an opportunity for policy change that would be in line with previous patterns. For example, they say, when war has led to an increase in people with disabilities, what’s often followed is a transformation of policies through legislation. Such shifts occur due to the combined work of existing advocates and the efforts of newly disabled people, their families and employers.

To that end, long COVID survivors have already shown they can mobilize: The Long COVID Alliance – a network of patients, providers, scientists and disease experts – has partnered with groups like Survivor Corps and Body Politic to advocate for long-term investment in research and treatment infrastructure. James is a member of Survivor Corps, and credits the group with helping her ask the right questions when seeking benefits.

“If they end up being a huge political force, then they can help force change in the disability system,” Imparato says.

Chantelle James’ nurse uniforms hang in her guest bedroom closet at her home in Cedar Park, Texas.(Montinique Monroe for USN&WR)

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 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.

Chantelle James poses for a portrait inside of her home in Cedar Park, Texas. “It’s just a mess. It’s been a frustrating process because I feel like I’m not getting any of the care and … they’re trying to write off my conditions,” James says of her quest for disability benefits.(Montinique Monroe for USN&WR)

Beyond policy changes on Capitol Hill, long-haulers also can seek legal routes to argue for benefits.

The Long COVID Alliance partners with law firm Kantor & Kantor to help members seek legal action against insurance companies if they believe they’ve been improperly denied benefits. The firm has even developed a guide specifically for COVID-19 patients, and firm associate Andrew Kantor says cases dealing with long COVID are just now cropping up, as some long-haulers are seeing their short-term disability benefits end and moving on to seek long-term disability. Kantor originally fell into this legal niche by helping patients with chronic fatigue syndrome, which some physicians – including White House adviser Dr. Anthony Fauci – have noted has parallels to long COVID.

Kantor says long COVID patients may experience the same types of denials as chronic fatigue patients, with insurance companies claiming there isn’t sufficient evidence of an illness.

“There’s doctors who believe them and there’s even lab reports that say something’s going on, but they’ll still get a denial because there’s no objective evidence confirming your inability to work,” Kantor says.

Kantor recommends people with long COVID look into their insurance policies to see if chronic fatigue syndrome is excluded from disability benefits – something he says he often sees. He also says patients should carefully read denial letters and make note of binding deadlines for appeals. And he recommends requesting copies of claim files from insurance companies in writing, which he says can be brought to a lawyer for consultation.

Not all long-haulers have struggled to get benefits: Kathy Flaherty, a 53-year-old lawyer in Connecticut, has been successful in getting long-term disability. She contracted COVID-19 last March and has since struggled with pain and exhaustion, but credits her workplace for being flexible with her needs. As executive director of the nonprofit Connecticut Legal Rights Project, Inc., Flaherty works almost exclusively from her bed when she can.

But this also isn’t Flaherty’s first go-round. Two decades ago, she says, she was on short-term disability for another issue. Now, she wonders how people without the support and knowledge she has are able to navigate the system.

“What are the systems that are set up to support (newly) disabled people?” she asks.

Williams, at the Center for American Progress, says she’s empathetic to those who may be navigating the system for the first time – particularly young people who may never have considered themselves having to do so.

“We’ll need to see employers really committing to growing their knowledge base around how COVID will change how people are coming to work and really being open and supportive,” Williams says.


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