Washington, D.C. CNN —
Pushing through cognitive impairment, migraines and severe fatigue, Michaelene Carlton, 49, mustered up the energy last week to dial the Social Security Administration to speak to her newly appointed Social Security Disability Insurance case manager. She has left six messages, one every two weeks since late December, and she still hasn’t heard back.
Carlton, who says she has had long-term Covid-19 symptoms since March 2020, is one of up to 23 million Americans estimated to be living with post-acute sequelae SARS-CoV-2 infection. PASC is the medical name often given to Covid-19 symptoms that last or evolve after an initial infection. Those estimates are from the Department of Health and Human Services as of late last year.
The chronic condition can include symptoms from memory loss and extreme fatigue to muscle weakness and musculoskeletal pain. Patients can struggle for months and even years, and many cannot work during that period.
A study by The Brookings Institution found that as many as 683,000 workers may have had to leave the labor force due to long Covid as of October 2022.
Pandemic issues and budget cuts at the Social Security Administration, which handles SSDI claims, have resulted in the lowest staffing levels in 25 years, according to the Center on Budget and Policy Priorities. That has kept long Covid cases backlogged.
Decision wait times for disability insurance can range from months to years, according to data from nonprofit think tank USA Facts. Rebecca Cokley, program director for disability Rights at the Ford Foundation, agrees the SSDI process is arduous and can last years before granting an applicant approval or denial.
“Around 10,000 people die a year waiting for disability,” Cokley said. “With long Covid, I only expect it to get worse.”
Carlton says she has spent the last three months trying to find out the status of her disability application. Everything rides on whether she gets approved, Carlton told CNN. SSDI’s monthly benefits are generally around $800 for individuals and $1,300 for families.
“It’s my family’s future,” she said, “I can’t do much physically. I can’t work. This way, I could at least contribute something. It would allow me to feed my family. But the system is broken.”
People with long Covid “were less likely to be employed full time and more likely to be unemployed” due to the “presence of cognitive symptoms,” according to a recent study in the medical journal JAMA Network Open.
A January study from the New York State Insurance Fund found that 18% of long Covid patients in that state have not been able to return to work for more than one year.
Yet under the Americans with Disabilities Act, long Covid does not always qualify as a disability. People have to prove that it “substantially limits one or more major life activities.”
It’s been nearly two years since Carlton sent her application for disability insurance in March 2021, which, she said, required sifting through medical records and employment history, conjuring up logins for each portal and requesting doctors to fill out forms.
After waiting eight months for a caseworker to take on her application, she said she discovered that person had resigned. Carlton was recently appointed a newer caseworker — the one she has not been able to reach.
A former special education teacher, Carlton said the funds could help pay her mortgage in Magnolia, Delaware, where she lives with her retired military husband, who works as a high school ROTC teacher, and their two college- and high school-age children.
“That extra little bit, even if it’s small, would be a huge weight lifted off our shoulders,” she told CNN.
The Department of Health and Human Services estimates $50 billion in annual salaries in the US is lost annually due to long Covid. A Brookings analysis puts that total at an even higher number: a staggering $170 billion lost by workers.
Yet the government hasn’t been vocal about the role Covid-19 plays in the economy. President Joe Biden has mentioned long Covid only twice since he was in office, once in his announcement in the Rose Garden in June 2021 when he said the condition “can sometimes” qualify as a disability, and in September 2022 during an event for Disability Pride Month.
And two Congressional bills addressing the long Covid crisis — The “Covid-19 Long Haulers Act,” which would’ve collected data on long Covid patients with the goal of creating better care and treatment, and “The Care For Long Covid Act” would’ve improved research, centralized data and resources for people with Long Covid — died without making it out of committee.
“Covid no longer controls our lives,” Biden said earlier this month in his State of the Union address, echoing previous comments from Federal Reserve Chairman Jerome Powell, who said the central bank no longer considers Covid an ongoing economic risk.
But for many long Covid patients, it remains an ordeal on many levels, including the mental anguish of simply trying to cut through a notoriously bureaucratic federal disability application process.
“I feel like we’re being erased,” said Sarah Steinberg, 40, a Covid “long-hauler” and self-employed architectural designer. Disabled by long Covid since March 2020, she lives with her spouse and their 7-year-old son in Portland, Ore.
Unlike workers whose jobs offer benefits packages, some freelancers like Steinberg say they find themselves locked out of benefits like health, dental, life, and short- and long-term disability insurance.
Steinberg takes occasional gigs, but said she’s lost work opportunities because her symptoms, including cognitive deficits and severe fatigue, cause her to make mistakes. Now, her husband carries the financial burden alone.
“It’s going from a two-income household to one-income — it changes what we buy and our ability to spend money,” said Steinberg. “We didn’t design our life to be a single-income household.”
Other long Covid patients have rearranged their finances, too. Carlton and her husband have stopped contributing to their children’s college savings accounts and are no longer saving for retirement.
“My son stayed home and doesn’t live on campus since we can’t afford it,” she said. “He checks on me before his commute to see if I need water, anything, because I may be in bed that entire day. It’s sweet but he should be enjoying his life being a college kid.”
Some long Covid patients whose jobs offer benefits packages say they have found the disability process easier to navigate.
Ty Godwin, 60, a former triathlete and software sales executive in Denver, was just awarded disability benefits. However, to make ends meet while waiting for the decision on disability approval, he and his wife rented out their home and stayed with family. He says he has been disabled by Covid since early 2020.
Other than one demanding four-hour neuropsychiatric evaluation, he said, he breezed through the application process — mostly because his employer’s disability insurance paid for an attorney. Godwin let his lawyer handle the majority of the paperwork and didn’t end up paying out of pocket for legal representation.
“There’s an incentive [for the company] to pay for a lawyer because it’s less that they have to pay out each month if I’m awarded,” said Godwin. His company’s private long-term disability insurance pays a smaller percentage of the monthly benefit payout when federal disability pays a portion.
To break through the red tape, the majority of applicants are all but forced to hire legal representation, say Cokley and Nancy Cavey, a disability attorney in St. Petersburg, Florida. The attorney fee is 25% of back pay, or up to $7,200, whichever comes first.
“I tell my clients, ‘Fully expect you’re going to be denied,’” said Cavey. “That’s, unfortunately, just the process.”
One reason could be that nearly three years into the pandemic, long Covid still isn’t included on SSA’s listing of qualifying disabilities. When Cavey argues a case in court, she has to describe the systems affected: neurological, digestive, pulmonary, cardiac and more.
The Social Security Administration acknowledged that applicant wait times for disability benefits are “far too long,” adding that long Covid patients “face the same process and wait times as other applicants.”
“We are laying the foundation for improved services by rebuilding our workforce, after ending 2022 at our lowest staffing level in over 25 years driven by years of funding levels below the President’s Budget,” SSA stated in an email to CNN. “However, it will take time and resources for these new hires to become proficient.”
The agency stated they have “flagged about 47,500 disability claims nationally that include induction of a Covid-19 infection at some point,” but did not state that those cases included long Covid.
A quarter of Cavey’s inquiries and cases now, she said, are about long Covid or Covid-19 complications.
“They’re not only dealing with long Covid complications, but they’re dealing with financial complications,” she said of her clients. “They have the feeling of, ‘What do I do next? This is who I am. I need to provide for my family, and I don’t know how to proceed.’”
There’s also a fight against the clock. Once applicants are denied, they must file an appeal within 60 days, or the case can get thrown out. The nature of Long Covid, which can affect cognitive function including speech and attention difficulty, makes this particularly challenging.
Steinberg said she scrambled to hire an attorney when she discovered the deadline. Yet when she called, she was warned “post-viral cases” like hers don’t often win.
“I want to be working,” she said. “I don’t want to be on disability, but I spent $17,000 on medical expenses last year trying to get better. If I didn’t have support and savings, I’d be on the streets.”
Disability experts like Cokley are familiar with the process.
“Trying to apply for SSDI makes doing your taxes look like a kindergarten watercolor painting,” she said. “It’s well known that you usually have to apply multiple times. It can take years.”
Carlton, who calls herself her “own best advocate,” has chosen not to hire an attorney because she can’t afford to lose the 25% of her award. She continues trying to break through the system, calling the SSA office and scouring tips on social media — and coming to terms with a heartbreaking reality.
“I used to run my kids to soccer practice. I was able to see their games,” Carlton said, through tears. “I was a good mom. I was the mom, you know? Now I’m the mom who can’t get out of bed or off the couch. And it’s so frustrating to have no [financial] support.”