Washington DC, CNN —
Overcoming cognitive impairment, migraines and severe fatigue, Michaeleen Carlton, 49, mustered the strength to call the Social Security Administration last week to speak with a newly appointed Social Security Disability Insurance case manager. She’s left six messages, one every two weeks since late December, but has yet to hear back.
Carlton, who said he has had long-term COVID-19 symptoms since March 2020, is one of up to 23 million Americans estimated to have acute sequelae from SARS-CoV-2 infection. PASC is the medical name often given to COVID-19 symptoms that persist or progress after initial infection. These estimates are from the Department of Health and Human Services as of late last year.
This chronic illness can cause a range of symptoms, from memory loss and extreme fatigue to muscle weakness and musculoskeletal pain. Patients suffer for months or even years, many of whom are unable to work during that time.
According to a study by the Brookings Institution, as of October 2022, up to 683,000 workers may have been forced to leave the labor force due to the COVID-19 pandemic.
The pandemic and budget cuts to the Social Security Administration, which processes SSDI claims, have pushed staffing levels to their lowest in 25 years, according to the Center on Budget and Policy Priorities, creating a backlog of long-running coronavirus-related cases.
According to data from the nonprofit think tank USAFacts, wait times for disability insurance decisions can last anywhere from months to years, and Rebecca Cokley, director of the disability rights program at the Ford Foundation, agrees that the SSDI process is arduous and can take years before an applicant is approved or denied.
“Around 10,000 people a year die while waiting for disability benefits,” Cokley said, “and we expect the situation to only get worse as the pandemic drags on.”
Carlton said she’s spent the past three months tracking the progress of her disability application. It all depends on whether her application is approved, she told CNN. SSDI monthly benefits are typically about $800 for an individual and $1,300 for a family.
“This is my family’s future,” she says. “I can’t do much physically. I can’t work. This way I can at least contribute something. I can provide for my family. But the system is broken.”
A recent study in the medical journal JAMA Network Open found that people with long-term COVID-19 symptoms “were less likely to work full-time and more likely to be unemployed” due to “the presence of cognitive symptoms.”
A January survey by the New York State Health Fund found that 18% of long-covid patients in the state had not returned to work for more than a year.
But under the Americans with Disabilities Act, long-term COVID-19 doesn’t necessarily qualify as a disability; people must prove that it “significantly limits one or more major life activities.”
Courtesy of Michael Carlton
Michaelane Carlton, left, in May 2019, before the COVID-19 pandemic, and right, in hospital in July 2021.
It’s been almost two years since Carlton sent in her application for disability insurance in March 2021, but the process required sifting through her medical records and employment history, finding login information for each portal and getting her doctor to fill out paperwork, she said.
After waiting eight months for a caseworker to take on her application, she said, she learned that person had resigned, and Carlton was recently assigned a new caseworker who she has been unable to contact.
Ms. Carlton, a former special education teacher, said the money will help pay the mortgage in Magnolia, Delaware, where she lives with her husband, a military veteran who works as a high school reserve officer training instructor, and her two children, one in college and one in high school.
“Even if it’s just a small thing, that little extra thing will take a huge weight off our shoulders,” she told CNN.
The Department of Health and Human Services estimates that the long-term pandemic has cost Americans $50 billion a year in lost pay, and a Brookings Institution analysis puts the total even higher, putting workers’ losses at a staggering $170 billion.
But the administration has not been vocal about the coronavirus’ impact on the economy. President Joe Biden has only mentioned Long Covid twice since taking office: once during a Rose Garden announcement in June 2021, when he said the condition could “sometimes” be considered a disability, and again in September 2022 during a Disability Pride Month event.
And two congressional bills to address the long-COVID crisis — the COVID-19 Long-Hauler Act, which would collect data on long-COVID patients for better care and treatment, and the Long-COVID Care Act, which would improve research, centralized data and resources for long-COVID patients — died without making it out of committee.
“The coronavirus no longer dominates our lives,” Biden said in his State of the Union address earlier this month, repeating previous comments from Federal Reserve Chairman Jerome Powell that the central bank no longer views the coronavirus as an ongoing economic risk.
But for many long-term Covid patients, it remains a challenge on many levels, including the mental anguish of simply navigating a notoriously bureaucratic federal disability application process.
“It feels like we’re being wiped out,” said Sarah Steinberg, 40, a self-employed architectural designer and COVID-19 “long-term survivor” who has been disabled since March 2020 due to the pandemic and lives in Portland, Oregon, with her spouse and 7-year-old son.
Unlike office workers who are offered a benefits package, some freelancers like Steinberg feel they don’t have access to perks like health insurance, dental insurance, life insurance and short-term and long-term disability insurance.
Courtesy of Sarah Steinberg
On the left is Sarah Steinberg during a mountain climbing trip in December 2019. On the right is a photo from January of this year, when she “arrived at the bus stop and took a commemorative selfie.”
Although Steinberg occasionally takes on work, her symptoms, including cognitive impairment and severe fatigue, have led to her making mistakes and missing work opportunities, and now her husband is shouldering the financial burden alone.
“Going from a dual-income household to a single-income household changes what we buy and our ability to spend money,” Steinberg says. “We didn’t design our lives as single-income households.”
Other long-term Covid patients are also reassessing their finances: Ms. Carlton and her husband have stopped contributing to their children’s college savings accounts and have stopped saving for retirement.
“My son lives at home and doesn’t live on campus because we don’t have the money,” she said. “He comes by to make sure he has water and other things he needs before he goes to work because he might be in bed all day. It’s cute, but he should enjoy life as a college student.”
Some long-term COVID-19 patients who work in workplaces with benefits have found the disability certification process easier than it was before.
Ty Godwin, 60, a former triathlete and software sales executive in Denver, recently received disability benefits. But while he and his wife were waiting for a decision on his disability benefits, they were renting out their home and living with family members to make ends meet. He said he’s been on disability since early 2020 as a result of COVID-19.
Courtesy of Ty Godwin
Left: Ty Godwin visiting New York City in 2017. Right: Waiting in a doctor’s office in December 2020.
Aside from a four-hour neuropsychiatric evaluation, Mr. Godwin says the application process was easy, mainly because his employer’s disability insurance covered his legal fees, which he left to his lawyer to handle much of the paperwork and didn’t end up paying for out-of-pocket legal fees.
“There is an incentive [for the company] “I pay the attorney’s fees because if I win compensation, I’ll pay less each month,” said Godwin, whose company’s private long-term disability insurance pays a smaller percentage of monthly benefits while federal disability insurance pays a portion.
To get through the process, most applicants are forced to hire an attorney, say Cokley and Nancy Cavey, disability attorneys in St. Petersburg, Fla. Attorney fees can be as much as 25 percent of unpaid wages or up to $7,200, whichever comes first.
“I tell my clients, ‘Be prepared for rejection,'” Cavey says. “Unfortunately, that’s the process.”
One reason may be that almost three years into the pandemic, Long Covid has not yet been included on the Department of Social Services’ list of disability certifications. When Cavey argues in court, she has to explain which systems are affected: the nervous system, digestive system, lungs and heart.
The Social Security Administration acknowledged that wait times for people applying for disability benefits are “far too long,” adding that long-term COVID patients “face the same processes and wait times as other claimants.”
“After years of funding levels below the President’s budget, SSA is ending 2022 with the lowest staffing levels in 25 years, but it is laying the foundation for improved service by rebuilding its workforce,” the SSA said in an email to CNN. “However, these new hires will need time and resources to become skilled.”
“Nationwide, we reported approximately 47,500 disability claims involving COVID-induced illness at some point,” the agency said, without specifying whether those cases included long COVID-19.
Currently, Cavey said, a quarter of the calls and cases he receives are for long COVID or complications from COVID-19.
“They’re dealing with not only the complications of long-term COVID, but also financial issues,” she said of her clients. “They’re like, ‘What do I do next? This is who I am. I have to provide for my family and I don’t know how to do that.’
There is also a race against time: if an application is denied, it must be appealed within 60 days, or it may be dismissed. This is particularly difficult because long Covid can affect cognitive functions, such as speech and attention disorders.
Steinberg said she rushed to hire a lawyer when she learned of the deadline, but when she called, she was warned that “post-virus lawsuits” like hers rarely win.
“I want to work,” she said. “I don’t want to get disability benefits, but I spent $17,000 on medical bills last year to get better. Without the support and savings, I would be living on the streets.”
Disability experts like Cockley are familiar with the process.
“When you try to apply for SSDI, your tax return looks like a kindergarten watercolor painting,” she says, “and we all know that you usually have to apply multiple times, and it can take years.”
Carlton, who calls herself “my own best advocate,” has chosen not to hire a lawyer because she can’t afford to lose 25 percent of her benefits. She continues to try to get around the system by calling the Social Security Administration and searching social media for tips, while coming to terms with the heartbreaking reality.
“I took my kids to soccer practice. I was able to watch the games,” Carlton said through tears. “I was a good mom. I was a mom. Now I’m a mom who can’t even get off the bed or the couch. And it’s really frustrating for my kids not to be able to do anything.” [financial] support.”