Handicapped by the long COVID? Disability benefits can be hard to get

When Joséphine Cabrera Taveras was infected with COVID-19[feminine] in the spring of 2020, she had not anticipated that the virus would put her out of work for two years and put her family at risk of eviction.

Taveras, a mother of two in Brooklyn, New York, said her battle with the long COVID meant coping with debilitating symptoms, from breathing difficulties to arthritis, that kept her from returning to her job as a nanny. Unable to work — and without access to Social Security disability insurance or other government assistance — Taveras and her family face a looming pile of bills.

“We are about to lose our apartment because we are behind on rent,” Taveras, 32, said. Her application for Social Security Disability Assistance, submitted last fall, was denied, but she is appealing.

Like many others with long COVID, Taveras fell through the cracks of a system that was time-consuming and difficult to navigate even before the COVID-19 pandemic. People face years-long wait times, insufficient legal support and a lack of clear guidance on how to prove they are disabled – compounded by the challenges of a medical system that does not There is no uniform process for diagnosing long COVID, according to health experts and disability lawyers.

The Biden Administration promised Support to people who have had COVID for a long time, but patient advocates say many are struggling to get help from the government.

Centers for Disease Control and Prevention broadly defines long COVID, as a “range of ongoing health problems” that can last “weeks, months or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that “include an indication of COVID infection at some time,” spokeswoman Nicole Tiggemann said. How many people with long-term COVID are among the over a million disability claims awaiting payment by Social Security is unknown.

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based company that helps people apply for Social Security, involved people struggling with COVID-19, TJ Geist said. , director of the company. Other companies are reporting similar numbers.

Long waits for disability assistance often end in denial, in part because long-time COVID patients lack the substantial medical evidence federal authorities need, Geist said. There is no standard process for diagnosing long COVID. Likewise, Social Security “has not yet issued specific guidance on how to assess COVID claims” for government officials reviewing claims, he said.

A recent report from the Brookings Institution estimates that 2 to 4 million people are unemployed because of the long COVID. A study published in September by the National Bureau of Economic Research put the number at 500,000.

Advocates suggest that many people with long-term COVID have not yet recognized their need for government benefits and may start applying soon.

“I didn’t realize I was disabled for four years because my ability fluctuated so much,” said Alison Sbrana, a patient advocate with the long-running COVID support group. Body politic. She has a chronic illness whose symptoms resemble long COVIDs in many cases and has received Social Security disability benefits for several years.

“If you apply my timeline to people who have had COVID for a long time, even people who got sick in early 2020, we’re not going to know the full extent of their ability to work or not until 2024,” he said. she declared.

In July 2021, the Department of Health and Human Services officially Long COVID recognized as a disability. Developing recognition, the department and the White House published a report in August 2022 which summarizes the “services and supports” available for people with long-term COVID and others who have experienced the long-term effects of the pandemic.

But accessing support isn’t as simple as announcements from the White House may suggest. First, the July 2021 guidelines recognized long COVID under the Americans with Disabilities Act, but did not extend to the Social Security Administration, which administers benefit programs.

Under the ADA, longtime COVID patients who can still work can ask their employers for accommodations, such as space to rest or a more flexible schedule, said Juliana Reno, a New York lawyer who specializes in social benefits. Social Security, however, has stricter standards: To qualify for disability insurance, people must prove that their lengthy COVID symptoms are so debilitating that they cannot work.

“The application process is very demanding, very confusing for patients,” Sbrana said. “It also depends entirely on your ability to have this substantial breadcrumb trail of medical evidence.”

Most requests are denied in the first round, according to Sbrana and other lawyers. Patients usually appeal the decision, which often leads to a second refusal. At this point, they can request a court hearing. The whole process can take a year or more and usually requires legal assistance.

The pandemic extended those wait times as Social Security offices closed and did not quickly transition to remote operations. Additionally, common symptoms such as brain fog can make it difficult to fill out online applications or spend hours on the phone with officials.

Long-term COVID patients who have been hospitalized with severe symptoms can submit documentation from those hospital stays and are more likely to receive benefits, Geist said. But for people who initially had mild cases or had “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the disease and can approve of the symptoms can take months.

Amanda Martin, a longtime COVID patient and advocate, is one of those lost workers. Martin contracted COVID-19 in April 2020 while working as a contractor for the US Navy and lost that job when they were unable to recover quickly.

At first, unemployment benefits provided support, but Martin’s symptoms, including severe fatigue and brain fog, persisted. More than two years after the initial infection, Martin is still “resting 90% of the time,” they said. Martin receives food stamps and Medicaid but has no help paying for other essentials, like gas. Their application for federal disability benefits was denied twice.

“I am currently a year into the (application) process; I have eight to 11 months left,” Martin said. “I have $50 in my savings account.”

Many people with long-term COVID don’t have the financial resources to hire a lawyer — or access to a doctor who can help them with their documentation, which makes the situation even more difficult.

Patient advocacy organizations are pushing for a more efficient application process, specific guidance for officials assessing long COVID cases, and faster eligibility for Medicare coverage after a disability claim is approved. (The typical wait is two years.)

The organizations also serve as support groups for people with long-term COVID, sharing resources and reassuring that they are not alone. Some organizations, such as the Blooming Magnolia nonprofit, raise funds for direct distribution to people with long COVID. But patients say these efforts do not come close to the scale of funding needed.

Taveras, the mom from Brooklyn, said she knows many other people struggling with similar issues. “We’re trying to get support from the government, and we’re not getting it,” she said. Taveras created a GoFundMe page to ask for help for his family.

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Kaiser Health News is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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