When Josephine Cabrera Taveras contracted Covid-19 in the spring of 2020, she didn’t anticipate that the virus would knock 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 long fight with Covid has meant dealing with debilitating symptoms ranging from shortness of breath to arthritis, which has prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security disability insurance or other government aid — Taveras and his family face a pile of bills.
“We’re probably in the middle of losing our apartment because we’re behind on the rent,” said Taveras, 32. His application for Social Security disability benefits, submitted last fall, was denied, but he is applying.
Like many others with prolonged covid, Taveras fell through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, inadequate legal support, and a lack of clear guidance on how to prove they’re disabled — compounded by the challenges of a medical system that lacks a uniform process for long Covid diagnoses, according to Health. Expert and Disability Attorney.
The Biden administration has long promised help for people with Covid, but patient advocates say many are struggling to get government help.
The Centers for Disease Control and Prevention broadly defines prolonged 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 nearly 40,000 disability claims that “at some point include indications of a Covid infection,” spokeswoman Nicole Tiegeman said. Of the more than 1 million disability claims awaiting processing by Social Security, it is unknown how many people have chronic Covid.
In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, have been linked to Covid, said TJ Geist, a director at the firm. Other companies report similar figures.
Long waits for disability assistance often end in denials, because long Covid patients don’t have enough medical evidence federal officials need, Geist said. There is no standard procedure for diagnosing prolonged covid. Similarly, Social Security “has yet to provide specific guidance on how to evaluate Covid claims” for government officials reviewing applications, he said.
A recent report by the Brookings Institution estimated that 2 million to 4 million people are out of work due to prolonged Covid. A survey released in September by the National Bureau of Economic Research put the number at 500,000.
Advocates suggest that many people with prolonged covid have yet to recognize their need for government benefits and may start applying sooner.
“I didn’t realize I was disabled for four years because my ability would fluctuate so much,” said Alison Sbrana, a patient-advocate for the long-standing Covid support group Body Politic. He has a chronic illness with symptoms similar to prolonged covid in many cases and has paid Social Security disability for several years.
“If you apply my timeline to people with prolonged Covid, even those who got sick in early 2020, we won’t know the full extent of their ability to work or not until 2024,” he said.
In July 2021, the Department of Health and Human Services officially recognized chronic Covid as a disability. Extending the recognition, the department and the White House released a report in August 2022 summarizing the “services and supports” available to people with Covid-19 and others experiencing long-term effects from the pandemic.
But accessing support isn’t as easy as White House announcements might suggest. First, the July 2021 guidance recognized long-term covid under the Americans with Disabilities Act but did not extend it to the Social Security Administration, which runs the benefit program.
Under the ADA, chronic Covid patients who can still work can ask their employers for accommodations, such as rest periods or more flexible schedules, said Juliana Reno, a New York lawyer who specializes in employee benefits. Social Security, however, has stricter standards: to get disability insurance, people must prove their chronic Covid symptoms are so debilitating that they can’t work.
“The application process is very demanding, very confusing for patients,” Sbrana said. “It depends entirely on you having this substantial breadcrumb trail of medical evidence.”
According to Sbrana and other advocates, most applications are denied in the first round. Patients usually appeal the decision, which is often denied a second time. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.
The pandemic extended these waiting times, as social security offices closed and quickly shifted to remote operations. Furthermore, common symptoms like brain fog can make it difficult to fill out applications online or spend hours on the phone with officials.
Longer Covid patients who have been hospitalized with severe symptoms can document that hospital stay and are more likely to receive benefits, Geist said. But for those who initially had a mild case, or those with “invisible-type symptoms” like brain fog and fatigue, Geist said, documentation is more difficult. To find a doctor who understands the condition and can stop the symptoms.
Amanda Martin, a longtime Covid patient and advocate, is one of those lost workers. Martin contracted Covid in April 2020 while working as a subcontractor for the US Navy and lost that job because he was unable to recover quickly.
At first, unemployment benefits provided help, but Martin’s symptoms — including severe fatigue and brain fog — persisted. More than two years after the initial infection, Martin is still “on bed rest 90% of the time,” they said. Martin receives food stamps and Medicaid but doesn’t have help paying for other essentials like gas. Their applications for federal disability benefits have been denied twice.
“I am currently on a year [application] I have eight to 11 months left in the process,” Martin said. “I have $50 in my savings account.”
Many people with prolonged covid don’t have the financial resources to hire a lawyer — or access to a doctor who can help them with documentation, which makes the situation even more difficult.
Patient advocacy organizations are pushing for a more efficient application process, specific guidelines for officials evaluating lengthy Covid cases, and faster eligibility for Medicare coverage after a disability application is approved. (The typical wait is two years.)
Organizations also act as support groups for people with prolonged covid, sharing resources and reassurance that they are not alone. Some organizations, such as the non-profit Blooming Magnolia, even raise funds for direct distribution to people with chronic Covid. But patients say these efforts don’t come close to the scale of funding needed.
Taveras, a mother from Brooklyn, said she knows many other people who are dealing with similar issues. “We are trying to get support from the government, and we are not getting it,” he said. Taveras has set up a GoFundMe page to request support for his family.
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