Since early in the pandemic, people with long COVID have faced challenges in applying for disability benefits, including from their employers, insurance providers and the U.S. Social Security Administration. Applications often take a long time and are denied even for people who clearly have debilitating symptoms, leading to years-long, arduous appeals processes. The same has been true decades prior to 2020 for people with other infection-associated chronic diseases.

To learn more about the disability insurance system, Betsy Ladyzhets spoke to Barbara Comerford, a longtime disability lawyer based in New Jersey who specializes in these cases. Comerford has represented people with myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or CFS) for more than 30 years, including high-profile cases like that of journalist Brian Vastag.

Comerford discussed how the process works, her advice for putting together applications and appeals, how long COVID has impacted her practice, and more. This interview has been lightly edited and condensed for clarity.

Barbara Comerford: Should we focus on disability insurance, or do you want to focus on Social Security disability, or both?

Betsy Ladyzhets: Both, because people (with long COVID) are applying for both.

BC:  Right. And often, people think they should only apply for one, (but they should apply for both.)

Most of the disability plans that people have are often through their employer. Those plans are known as ERISA plans, referring to Employee Retirement Income Security Act. It was created in the 1970s. … Congress created this regulatory scheme and then immediately created a zillion loopholes that corporations can drive a truck through. Later, ERISA covered all employee benefits in general.

Insurance companies wound up selling policies to corporations saying, “You can get the best people if you offer incentives.” And what’s a better incentive than, if someone gets sick, they can collect a substantial percentage of their salary until full retirement age? These are the sorts of perks that … People think, “If something happens to me, I’ll be protected.” The promise of these policies is that they will give people, usually, between 50% and 80% of their pre-disability income if they satisfy the requirements. Well, that’s a big if.

I’ve been doing this for 38 years. And I can tell you that 38 years ago, these (disability claims) were not problem cases. I used to do them for free for my litigation clients … But over the years, and really starting after 2001 with Sept. 11, all hell broke loose. They (insurance companies) began to get very aggressive. Every time there is an economic downfall, whatever it is, they get extremely aggressive. So you can imagine, with the onset of the pandemic, they knew what was coming.

I did, for many years, advocacy for ME/CFS cases. I represented thousands of people … A lot of my colleagues say, “Long COVID Social Security cases are almost impossible” because they don’t know what to do with them. My office hasn’t found that to be the case. I think the difference is, you have to document these cases with as much objective documentation of symptoms that people have … Get neuropsych testing, cardiopulmonary exercise testing and other tests.

I started doing webinars and seminars (about disability benefit applications) in 2020 because I knew this was coming. At that point, they weren’t calling it long COVID, they were just saying, some people with COVID weren’t getting better. But I knew it was going to turn into another ME/CFS disaster.

BL: How have you found the rise of long COVID has impacted your practice? Do you find you’re more in demand now?

BC: We’ve always had a high volume of cases. Quite a few of them were ME/CFS cases. We did a case, Vastag v. Prudential, in 2018. Brian Vastag, who was a science writer for The Washington Post, was my client, and I could not get over how aggressively Prudential was just dismissing him because it was an ME/CFS case.

And the same is happening with long COVID. We do cases all over the country on long COVID and ME/CFS. It’s my livelihood, so it’s important for me, but it also makes me a little crazy that people get treated the way they do and that they have to hire people like me.

One of the things that people get upset about is that they have to spend money to medically document their symptoms. And worse than that … I see these long COVID clinics, with doctors who are completely ignorant on long COVID, who surreptitiously write notes in the chart that they think it’s a psychiatric case. I don’t know how familiar you are with this.

BL: Unfortunately, I’m very familiar.

BC: It’s awful. Not only is it really hard on my clients …  it triggers them to read things that might not be what they said or might not be pleasant. And the number of times that I have seen that and it has sabotaged cases! I have to reconstruct the cases and have the clients contact the clinic (and get them to make corrections).

Mental/nervous limitations exist in all of these (insurance) policies … They can limit someone’s payments to two years if the case is a psychiatric case or mental/nervous limitation with a DSM diagnosis. 

BL: I wanted to ask also — there’s been a lot of research on long COVID at this point, and there was a report this summer from the National Academies specifically in response to a request from the Social Security Administration about long COVID as a disability, in which they found that this disease can result in inability to work, poor quality of life, all that stuff. Have you seen that report, or other research, like the growing body of research on these diseases, have an impact?

BC: I was asked to comment on that (report). Part of the problem with Social Security’s initiatives in this regard is that every Social Security case goes through what they call “sequential evaluation process.” You have to go through five steps to determine whether or not someone’s disabled. And among those steps is (matching people to a “medical listing of impairments,” but the list doesn’t include major symptoms for ME/CFS and similar diseases).

Years ago, there was an ME/CFS ruling called 99-2p. It offered guidelines (for ME/CFS cases that don’t fit the typical Social Security process). After that, I was asked to present to the national association of Social Security judges, there were 500 judges in the audience. And I asked, “By show of hands, how many of you are familiar with 99-2p?” Two hands went up.

Despite the guidelines, in practice, (the judges aren’t familiar with these diseases). Until there is a time when we can come up with a firm diagnostic criteria for long COVID, and we can say, “This is what you have to document for this illness.” … And it can’t just be a positive COVID test because many people got sick before testing was prevalent or they got sick after people stopped documenting that they were positive.

The other problem for long COVID cases is it’s not like cancer or a broken leg or herniated disc or something that people are accustomed to. Those people are not told they’re crazy. Those people are not told they’re imagining it. Those people are not told, “Well, we just don’t buy it.” This is what happens with (long COVID) and ME/CFS. The psych component that they try to pigeonhole these cases into is really a master stroke by the insurance industry that spends billions of dollars trying to persuade people that anyone who files for these benefits is a crook or fraud.

BL: It’s infuriating, especially when you see how deeply people’s quality of life is impacted by these diseases.

BC: Yes, every part of their life is impacted.

BL: I see what you’re saying about needing diagnostic criteria. In this time where we don’t have that yet, what would you want to see the Social Security Administration or other government agencies do to make it easier for all these people who are applying for benefits with long COVID and ME/CFS?

BC: They should (reevaluate) the sequential evaluation process, which has been there forever, and look at medically determinable impairment in the context of long COVID and ME/CFS. These diseases can be documented by things like neuropsych testing.

I’ll quickly go through the five-step sequential evaluation process. The first step is, “Is the person engaged in substantial gainful activity?” That is something you can do predictably, something that will last at least 12 months, and something that leads to gainful work, where you get paid and you can report for a job either part-time or full-time. In long COVID cases … you have to document that this person is not engaged in substantial gainful activity because they don’t know tomorrow if they’re going to be able to get up and get out of bed and take a shower, never mind report for work.

If you satisfy step one, they go to step two. There, they ask, “Do you have the ability, in light of your disability, to perform basic work-related activity?” Sitting, standing, reaching, pushing, pulling, reading, concentrating, things of that nature. And, “Does the disability negatively impact your ability to do these things?” (You need medical evidence, which can come from) a physician’s evaluation from a long COVID clinic, for example.

If you have that, you go to step three, which is where that horrible “medically determinable impairment” crap comes in. There isn’t (a specific listing) yet for long COVID, although they’re talking about it. Frankly, we’re still waiting for them to do one for ME/CFS, so I’m not holding my breath. That’s the only step in the process where, if they don’t satisfy it, you can still move on to the next step.

The fourth step is, “Is this person capable of performing the work that they performed for the last five years?” Until June of this year, it was the last 15 years … So we go through each job they had, all their symptoms and limitations and why they can’t do (the job anymore). If we document successfully that they can’t perform their past relevant work for the last five years as a result of their disability, we can then go to step five.

Step five, the burden shifts to the Social Security Administration. Social Security has to document that, in light of a person’s age, education and work experience, that there is no work in the national economy that they could perform. (To do this), Social Security has a big graph called the “medical vocational guidelines.” And essentially, the younger you are, the more skills you have, the more education you have, and the more skills that are transferable, generally you are found not disabled. But the graph is not supposed to be used for cases that involve what we call non-exertional and exertional complaints together. Pain, fatigue, things of that nature are all part of the non-exertional limitation.

That is how we lift ME/CFS and long COVID cases out of that graph. Despite the fact that many of our clients are very young, many of them are highly educated, many of them have developed skills that are not only transferable, but are also in high demand in the national economy — (we say that) because they can’t predictably perform sustained work of any kind, the grid should not be used to find them not disabled. But with all of this, every one of these cases, medical documentation of limitations is crucial. I can’t emphasize that enough.

BL: I know a lot of people in the long COVID community, they’ve already sent in their applications, and then it gets denied, and then they have to appeal. What is that process like, and how would you suggest people go about finding someone like you?

BC: It’s really important to do some research. You want to know if the doctor or attorney you’re dealing with has experience in these cases … I do (webinars and one-on-one education) for lawyers all the time because I’d rather them hear what has to be done and understand what happens if they don’t do it.

If I’m giving people advice on appeals … If it’s coming from a United States employer, you’re going to be governed by ERISA. That’s important because people might file a claim without knowing the exact company policy. Despite the fact that federal regulations require employers to give that information to employees, when someone gets sick and files a (short-term) disability claim, they are immediately cut off from the employee benefits portal (that has all the exact policy information). So then I’ve got to write a letter to the employers and fight to get that information.

You can’t even get discovery in these cases … Sometimes they will award benefits, and then six months in they’ll say, “We no longer believe you’re disabled.” Under ERISA, (employers and insurance companies) get all the advantages.

BL: It seems like people should know, if you’re filing against an employer, to save that policy information before you lose access to it. 

BC: When you get the notice of a denial, you can request a complete copy of the administrative record. You are entitled to see everything that the insurance company had on the case, and under federal regulations, they have 30 days to produce it.

And then you have 180 days to appeal that (denial). People say that’s a long time. It’s really not. Because you’ve got to go through thousands of pages of documents. You’ve got to document where they abuse their discretion. It’s not enough to have medical evidence … (The standard you have to push back on is that) the insurance company or the employer has a “reason” to deny the claim.

The lawyer’s job or the claimant’s job is to show all the examples they found in the administrative record that show (mistakes or poor judgment on the part of the insurance company or employer) … Sometimes, you will see reports of experts that they’ve retained to review the case, and the expert will say, “I think it’s a payable claim.” And then the next thing you find is them looking for another doctor who’s a little more receptive to their suggestions. If we see they’ve ignored the opinion of one of their experts, that’s an example of abuse of discretion and arbitrary, capricious conduct. Cherry-picking the evidence is another thing you often see in these cases.

BL: So it’s not just sending your own medical records, you have to show that the company has messed up.

BC: The insurance company or the employer, whoever is paying, you have to show that they abused their discretion.

BL: Is there anything else, any other advice or resources you would give people?

BC: This is really important. If it’s an ERISA case and they do not get that appeal in within 180 days, they’re foreclosed from pursuing it any further … (It’s a big mistake) if you blow those time deadlines.

This article was originally published by The Sick Times, a nonprofit newsroom that chronicles the long COVID crisis.

Have long COVID? Here’s what to know about disability insurance is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

An aerial view of the The Pentagon, May 12, 2021. (Department of Defense photo by Air Force Tech. Sgt. Brittany A. Chase)

This story mentions suicide. If you or a loved one are suffering from thoughts of self-harm, dial 988 or visit 988lifeline.org to live chat with a mental health professional.

WASHINGTON — House Democrats will face a tough vote this week on the final compromise annual defense bill that includes pay raises for troops but also bans coverage for U.S. service members’ children who seek transgender care.

All Democrats present Tuesday opposed a procedural vote, 211-207, to advance the historically bipartisan legislation, but will need to contend with a final vote as early as Wednesday. Congress has enacted the annual package for the last 63 years.

Rep. Adam Smith, the top Democrat on the House Committee on Armed Services, said in a statement he plans to vote against the massive defense policy bill.

The Washington state lawmaker said that “blanketly denying health care to people who need it — just because of a biased notion against transgender people — is wrong.”

“The inclusion of this harmful provision puts the lives of children at risk and may force thousands of service members to make the choice of continuing their military service or leaving to ensure their child can get the health care they need,” Smith said following the procedural vote.

President Joe Biden has not indicated whether he will sign the bill into law.

Pay raise, housing upgrades

The nearly $900 billion National Defense Authorization Act for fiscal year 2025 is set to green-light an across-the-board 4.5% pay raise to troops, plus a 10% pay hike in April for the military’s most junior soldiers.

The bill would also pave the way for upgrades in military housing and new protocols for preventing and assessing traumatic brain injuries caused by blast exposure.

Also making it into the bill’s final version were a few far-right wishlist items, including a hiring freeze on diversity, equity and inclusion positions, and a prohibition on any federal dollars used for so-called “critical race theory” in military education — though the section carves out academic freedom protections for instructors.

Trans coverage prohibition

Gaining the most attention is a four-line provision in the 1,800-page package that would expressly prohibit coverage for minors under the military’s TRICARE health program for “medical interventions for the treatment of gender dysphoria that could result in sterilization.” The bill does not define which interventions would be prohibited.

Gender dysphoria is defined by the medical community as incongruence between a person’s expressed gender and their sex assigned at birth. The experience often leads to mental distress, including increased risk of self-harm, according to the medical literature.

The chair of the Congressional Equality Caucus, Rep. Mark Pocan of Wisconsin, urged Democrats to vote no on the final package.

“For a party whose members constantly decry ‘big government,’ nothing is more hypocritical than hijacking the NDAA to override servicemembers’ decisions, in consultation with medical professionals and their children, about what medical care is best for their transgender kids,” Pocan said in a statement Tuesday afternoon.

Rep. Teresa Leger Fernández, one of the bill’s managers, spoke on the House floor Tuesday, decrying the provision that “fails to acknowledge that the lack of care leads to death, leads to suicide.”

The New Mexico Democrat accused House Republicans of thinking they know “better than the parent and the doctor as to what care your child should get. That is insulting to our Marines, to those who serve in our Navy, to those who are deployed overseas and in our bases around our own country.”

Speaker praises TRICARE ban

U.S. House Speaker Mike Johnson, during his weekly press conference Tuesday, praised “landmark investments” and the pay increase included in the bill.

“It’s really important right now. We improved housing for our military families and other benefits, and it’s also why we stopped funds from going to CRT in our military academies. We banned TRICARE from prescribing treatments that would ultimately sterilize our kids, and we gutted the DEI bureaucracy,” said the Louisiana Republican.

A Democrat-led effort to strike the transgender coverage provision failed Monday in the House Committee on Rules.

Smith told the committee that the provision is “fundamentally wrong” because gender dysphoria is widely recognized by medical professionals.

“The treatments that are available for it, including puberty blockers and hormone therapy, and also psychiatric help, have proven to be incredibly effective at helping young people, minors, who are dealing with suicidal thoughts, dealing with causes of massive confusion that have led them to have anxiety and depression,” said Smith.

Treatment options include mental health therapy, hormone therapy and surgery, though the World Professional Association for Transgender Health only recommends adolescent surgery under narrow circumstances that must meet numerous criteria. Some gender-affirming surgery causes sterilization, and the association recommends counseling for adolescents and their families about limited options to preserve fertility.

Smith told the committee Monday that anywhere from 6,000 to 7,000 children of U.S. service members are currently receiving treatment for gender dysphoria. The House Armed Services Committee did not respond to a request for further explanation of that number.

Gender-affirming care was not covered by military health insurance for service members’ children until September 2016. A statistical analysis published in JAMA Pediatrics in March 2019 concluded that just over 2,500 military-affiliated youth received the treatment between October 2009 and April 2017 during roughly 6,700 separate office visits.

Photo by Getty Images

For employees of small businesses, health benefits cost more and cover less than they do for employees of large companies, according to a new report released Tuesday.

“Small-firm employees are paying more for their health insurance coverage but getting less financial protection in return,” according to the report, produced by The Commonwealth Fund.

Wisconsin is right in line with the national trend. In 2023, insurance premiums for family coverage cost Wisconsin small business employees just over $1,300 more each year compared with the cost for employees of large businesses, according to the report.

Wisconsin small business employees also absorbed higher health costs up front, paying nearly $1,400 more a year on their health insurance deductibles in 2023 than their big business counterparts.

Those are close to the national average, with a smaller disparity than some states have. According to the report, small-firm employees in some states pay as much as $10,000 more toward their annual health insurance premiums than their large-firm counterparts.

Most large employers provide health coverage, and smaller employers competing with them for workers are motivated to provide coverage as well, but find it a lot more difficult, the report finds.

“Small firm employers have generally been in a tough place because they have so much less leverage than a large firm,” Sara Collins, a coauthor of the report, told the Wisconsin Examiner in an interview. “They have higher administrative costs per employee, and it’s a much more onerous benefit to provide.”

Because of those challenges, the Affordable Care Act (ACA), enacted in 2010, includes requirements for businesses with 50 or more employees to provide health coverage, but exempts smaller employers.

“While all firms face growing premiums, small employers may have less capacity to absorb these rising costs and may pass on greater portions of these costs to their employees,” the report states. “Half of participating small-business owners in a 2024 survey reported raising employee contributions in response to rising health care costs.”

For TJ Semanchin, who owns Wonderstate Coffee, the report’s analysis rings true.

Wonderstate operates a coffee roastery in Viroqua, Wisconsin, as well as three cafes: in Viroqua, Bayfield and Madison. The roastery employs about 30 people, and the three cafés about 20 people each.

“Our current health system is a major competitive disadvantage for small business,” said Semanchin. 

He would like to see a universal, single-payer health care plan. But since that’s not the current reality, “We want to be providing as best we can for our staff as a responsible employer, and we’re also competing for talent.”

The roastery and the cafés are structured as separate corporations and have different health plans.

On the café side, Wonderstate offers a supplemental policy for employees who don’t have health insurance or whose insurance has a high deductible; the policy covers needs such as emergency room visits and a telehealth service.

The business encourages employees to sign up for comprehensive coverage at Healthcare.gov under the Affordable Care Act, where they’re likely to qualify for enhanced tax-credit subsidies that have lowered the premium costs for people whose incomes qualify.

On the roastery side of the business, Wonderstate recently made a major switch after facing the prospect of an 18% increase in premium costs for employees.

“That is on top of years of double-digit increases,” Semanchin said. “That’s not sustainable at all.”

In response, Wonderstate switched to a level-funded plan for roastery division employees — similar to a self-funded plan, in which an employer covers health care costs directly from its revenues.

Wonderstate will pay a fixed amount each month from which the company managing the plan will pay for medical care as it’s needed. There’s company-wide catastrophic coverage if health care costs exceed the budget for the year.

Nationwide, according to the Commonwealth Fund report, about 40% of small-firm employees with health benefits are covered by self-funded or level-funded plans. Those plans are exempt from state insurance regulations and from protections provided by the Affordable Care Act, which prevents insurers from denying coverage or increasing premiums based on a person’s health history.

Semanchin said the provider reviewed the staff medical history before approving the business for the plan.  Wonderstate pays 80% of the premium for individual coverage and 50% of the family coverage premium.

“It’s allowed us to hold costs [down] for the first time in many years,” Semanchin said of the new plan. “If our staff has a bad year for medical bills, we might get kicked off” in future years.

That is not unusual, and the result can have “a very destabilizing effect on the small group market,” Collins said. “The markets function a lot better when everybody plays by the same rules.”

The report lists a number of policy options to help bolster the ability of small employers to provide health coverage for employees.

States that have expanded Medicaid under the ACA to cover people with incomes up to 138% of the federal poverty guideline could require employers to inform workers who would qualify for Medicaid about the option — which has low or no premiums and limited cost-sharing requirements — if it would be more affordable than the employer’s plan.

For states that haven’t expanded Medicaid — including Wisconsin — the report suggests that Congress could create a federal fallback plan covering the same group of people expansion would cover. “This would enable lower-income people with unaffordable employer plans to enroll in Medicaid in those states,” the report states.

Another option the report suggests would be to make enhanced subsidies for low-income purchasers of insurance at Healthcare.gov permanent. The subsidies are now scheduled to end next year. The report also suggests making it easier for workers at small firms with unaffordable or low-quality health plans to become eligible for the subsidies.

Extending the subsidies is already shaping up to be a significant subject of debate in Congress next year. “People are going to see really big increases in their premiums if they aren’t extended,” Collins said. “That will be a real cost shock to families,” leading more people to return to the ranks of the uninsured.

Wisconsin Watch partners with Gigafact to produce fact briefs — bite-sized fact checks of trending claims. Read our methodology to learn how we check claims.

Yes.

The rate of Americans without health insurance hit record lows in 2022 and 2023 by different measures.

The number of nonelderly uninsured individuals (25.6 million) and their uninsured rate (9.6%) reached record lows in 2022, the health policy organization KFF reported in December 2023.

The U.S. Health and Human Services Department reported that the uninsured rate for all U.S. residents reached an all-time low of 7.2% in the second quarter of 2023. The figure increased to 8.2% in the first quarter of 2024.

The historic lows were due to federal coverage policies during the COVID-19 pandemic and states expanding Medicaid eligibility, the research group Commonwealth Fund reported.

The requirement that states keep people on Medicaid during the public health emergency ended in April 2023. Some 360,000 Wisconsin residents lost coverage.

President Joe Biden claimed Aug. 19, 2024, at the Democratic National Convention that more Americans than ever have health insurance.

This fact brief is responsive to conversations such as this one.

Sources

KFF: Key Facts about the Uninsured Population

U.S. Department of Health and Human Services: National Uninsured Rate Reaches an All-Time Low in Early 2023 After the Close of the ACA Open Enrollment Period

Centers for Disease Control: Health Insurance Coverage: Early Release of Quarterly Estimates From the National Health Interview Survey, January 2023–March 2024

Commonwealth Fund: 2023 Scorecard on State Health System Performance

Wisconsin Watch: Worried about losing Medicaid access in Wisconsin? What to know

USA TODAY: Full speech: Joe Biden speaks at 2024 DNC | USA TODAY

Have record levels of Americans been covered by health insurance during the Biden administration? is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.