Applying for a long Covid Social Security disability is complicated

When Christopher Perry fell ill in July 2021, he thought he just had a bad cold.

But after Perry’s adult son found him passed out in his living room, he was rushed to hospital and put on life support for Covid-19.

A diagnosis of respiratory failure has led to long-term health consequences.

Today, Perry, 44, of Newport News, Virginia, can only walk short distances and gets winded quickly. His breathing difficulties mean he drives to the emergency room at least once a week.

“I start crying and I can’t breathe,” Perry said.

His weight, blood pressure and blood sugar levels have increased and require medication. He also receives respiratory treatments and oxygen.

“That’s all they can really do,” Perry said.

Perry’s condition has made it impossible to resume his former full-time job at a NASA steam power plant, climbing ladders and servicing boilers.

First he was able to take out short-term and then long-term disability insurance through his employer. Today, after a “very long, drawn out process,” Perry relies solely on Social Security’s disability benefit for his income, with monthly checks of about $1,600 a month.

“I didn’t know Covid was going to do all that,” Perry said.

To date, the Social Security Administration has reported about 44,000 disability claims that mention Covid-19, although this is not necessarily the primary reason for those claims. That represents only about 1% of the disability claims that have been received since the agency began tracking those claims.

However, it is possible that future claims for disability benefits will increase due to long Covid.

According to the US Department of Health and Human Services, up to 30% of Americans who contract Covid have developed long-range symptoms, affecting as many as 23 million people.

Long Covid has put an estimated 2 to 4 million Americans ages 18 to 65 out of work, according to recent research from the Brookings Institution. Those lost wages can add up to around $170 billion a year and potentially as much as $230 billion, the nonprofit public policy organization estimates.

To make up for the loss of income, patients typically take out short-term or long-term disability insurance if they already have insurance.

Those whose condition is expected to prevent them from working for at least 12 months or result in death may receive benefits from either Social Security disability insurance or Supplemental Security income.

Social Security disability benefits are generally available to workers who have earned enough credits through payroll taxes – typically 40 credits, although younger workers may be eligible with fewer. In 2023, one loan is equivalent to $1,640 in wages or self-employment earnings.

Supplemental Security Income, or SSI, is a federal benefit available to disabled individuals who may not be eligible for a Social Security disability based on their work records.

The average wait time for Social Security’s first disability decisions has increased during the pandemic, rising to an all-time high of 6.6 months in August, according to the Center on Budget and Policy Priorities. More than 1 million disability claims are pending with government disability assessment services.

The process of applying for federal disability benefits is lengthy. That has left some patients in a desperate financial situation with no other available source of income, according to Andrew Wylam, attorney and president of Pandemic Patients, a non-profit patient advocacy organization dedicated to helping Covid patients get the services they need.

“Some people hold onto their only hope of receiving SSDI benefits, and that’s a six, eight, or 12 month process,” Wylam said.

Meanwhile, Wylam has seen these patients drain their life savings, pay off their investments and liquidate their properties while clinging that Social Security disability benefits will eventually be available to help them stay afloat.

“It’s very demoralizing and it’s really heartbreaking to see people going through this situation,” Wylam said.

Applicants are also not guaranteed success at the end of this waiting period. The “grant rate” for disability claims, as measured by the Social Security Administration, averaged 31% between 2011 and 2020. Meanwhile, rejected disability claims averaged 67%.

Allsup, which works with people who are claiming or appealing Social Security disability benefits, sees around 4% to 5% of its monthly cases related to Covid or Long Covid, according to TJ Geist, the company’s lead attorney.

The most successful applications are in more severe cases, according to Geist. Often, these cases required hospitalization and ventilators, and resulted in significant long-term health effects such as organ failure.

Allsup, which works with NASA, helped Perry approve his application for Disability Social Security benefits.

“More difficult are still those cases that show more invisible long-term symptoms such as fatigue, brain fog or depression,” Geist said.

“And unfortunately, they have more difficulty getting approved,” he added.

These cases can be successful, but they take longer, according to Geist. A decision on an initial application can take six to eight months. If an objection has to be lodged against this, it can take another six months. And when it comes to a hearing, it could take a year or so.

“It can take up to three years for a case to be decided at a hearing,” Geist said.

When Perry applied for Social Security disability benefits, he had to fill out lengthy paperwork asking everything from how far he could walk without losing his breath to whether he was able to make his own dinner to cook.

Approval took about six months and probably would not have been possible without the help of a lawyer, he said.

Careful documentation of medical records also helps, Geist says, particularly with the “invisible” symptoms associated with long Covid.

“My advice in situations like this would be to make sure your doctor is tracking all of your symptoms, documenting them and having a full medical history on you,” Geist said.

“That can really make or break a case of Social Security disability,” he said.

The question for patients and medical staff is how long the disease can last. Social security benefits are designed for long-term conditions.

“A lot of people with long Covid want to work, and what they want is work housing,” said Alice Burns, associate director of the Medicaid and Uninsured Program at the Kaiser Family Foundation.

Adele Benes, 57, was in “excellent health” when she was exposed to Covid while working at a Chicago-area hospital in 2020. Now, 26 months later, she’s still suffering from debilitating symptoms, including fatigue, brain fog, and cognitive difficulties that have led to frequent trips to the emergency room.

To improve her condition, Benes has tried everything from off-label treatments to hypnosis. Sometimes she had trouble even moving from her bed to the bathroom, thinking the pain and discomfort would kill her.

“The feeling was overwhelming,” said Benes. “How can you feel so bad and not die?”

Benes applied for Disability Social Security benefits in February and is still awaiting a response. But what she wants most is to get healthy and get back to her normal life.

She cries when she remembers her previous job as an ultrasound technologist, where she was able to help sick patients. “It was joy,” she said.

The hardest part can be knowing that there is no cure.

“It’s a crazy disease and it’s invisible because we’re all hiding in our homes,” Benes said. “Nobody sees us and we look normal from the outside.”