People With Long Covid Face Barriers to Government Disability Benefits

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she did not foresee that the virus would knock her out of get the job done for two a long time and place her family members at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, claimed her bout with extensive covid has meant working with debilitating signs, ranging from breathing issues to arthritis, that have prevented her from returning to her career as a nanny. Unable to function — and with no accessibility to Social Safety Disability Coverage or other government support — Taveras and her household facial area a looming pile of payments.

“We are in the midst of quite possibly dropping our apartment because we’re guiding on rent,” said Taveras, 32. Her application for Social Protection incapacity support, submitted final drop, was rejected, but she is attractive.

Like quite a few some others with extended covid, Taveras has fallen as a result of the cracks of a method that was time-consuming and tough to navigate even ahead of the covid pandemic. People today are going through years-prolonged wait around periods, insufficient lawful aid, and a absence of clear advice on how to confirm they are disabled — compounded by the problems of a health care procedure that does not have a uniform system for diagnosing extended covid, according to health experts and disability lawyers.

The Biden administration promised support to people today with lengthy covid, but affected person advocates say numerous are struggling to get government assistance.

The Centers for Condition Command and Prevention defines long covid broadly, as a “range of ongoing overall health problems” that can last “weeks, months, or for a longer time.” This description incorporates people today, like Taveras, who are not able to get the job done, as effectively as individuals with less severe indicators, these kinds of as a long-expression decline of smell.

The Social Security Administration has discovered about 40,000 disability statements that “include sign of a covid an infection at some place,” spokesperson Nicole Tiggemann mentioned. How several people today with lengthy covid are among the the extra than 1 million disability statements awaiting processing by Social Protection is unidentified.

In latest months, about 5{7b6cc35713332e03d34197859d8d439e4802eb556451407ffda280a51e3c41ac} of new disability claims submitted by Allsup, an Illinois-dependent firm that allows men and women utilize for Social Safety, involved persons working with covid, mentioned T.J. Geist, a director at the agency. Other firms report related figures.

The extended waits for disability aid usually conclusion in denial, in portion simply because extended covid clients really don’t have the substantial healthcare proof that federal officers involve, Geist stated. There is no conventional system for diagnosing long covid. Similarly, Social Safety “has yet to give distinct advice on how to evaluate covid claims” for the government officers who evaluation applications, he said.

A current report from the Brookings Institution estimates that 2 million to 4 million people today are out of work due to the fact of long covid. A study released in September by the National Bureau of Financial Investigate puts the amount at 500,000.

Advocates propose that many folks with prolonged covid have but to figure out their want for federal government rewards and could start implementing soon.

“I did not have an understanding of that I was disabled for 4 decades for the reason that my ability would fluctuate so significantly,” explained Alison Sbrana, a individual-advocate with the extensive covid guidance group Body Politic. She has a serious disorder whose signs and symptoms are related to lengthy covid’s in many cases and has acquired Social Security incapacity payments for a number of years.

“If you implement my timeline to individuals with extended covid, even individuals who obtained unwell in early 2020, we’re not likely to know the comprehensive extent of their capacity to do the job or not till 2024,” she stated.

In July 2021, the Office of Health and fitness and Human Services formally acknowledged lengthy covid as a disability. Increasing on the recognition, the section and the White House published a report in August 2022 that summarizes the “services and supports” accessible for persons with extended covid and other folks who have experienced extensive-phrase impacts from the pandemic.

But accessing aid is not as very simple as White House announcements may perhaps recommend. 1st, the July 2021 guidance regarded lengthy covid beneath the People with Disabilities Act but didn’t increase to the Social Safety Administration, which operates advantage courses.

Under the ADA, extended covid people who can however get the job done may perhaps talk to their businesses for lodging, such as a place to rest or a more versatile routine, mentioned Juliana Reno, a New York law firm who specializes in worker rewards. Social Stability, on the other hand, has more stringent specifications: To receive incapacity coverage, people today ought to confirm their very long covid symptoms are so debilitating that they cannot work.

“The application system is incredibly demanding, pretty complicated for individuals,” Sbrana mentioned. “It also solely depends on you getting this sizeable breadcrumb path of healthcare proof.”

Most applications are denied in the first spherical, according to Sbrana and other advocates. People generally enchantment the determination, often primary to a 2nd denial. At that issue, they can request a court docket listening to. The full method can get a calendar year or far more and ordinarily necessitates authorized guidance.

The pandemic extended these wait times, as Social Safety places of work shut and did not quickly shift to remote operations. Furthermore, common signs this kind of as brain fog can make filling out on the net apps or paying out hours on the telephone with officers complicated.

Prolonged covid people who ended up hospitalized with severe signs can submit paperwork from those hospital stays and are additional most likely to get benefits, Geist explained. But for the individuals who experienced moderate scenarios in the beginning, or who have “invisible-style symptoms” like mind fog and exhaustion, Geist claimed, documentation is much more tough. Locating a health practitioner who understands the affliction and can signal off on indications may choose months.

Amanda Martin, a long covid individual and advocate, is a person of individuals missing staff. Martin received covid in April 2020 though working as a subcontractor for the U.S. Navy and shed that task when they were being unable to recuperate swiftly.

At very first, unemployment rewards supplied assistance, but Martin’s signs — which include rigorous fatigue and mind fog — ongoing. Additional than two several years immediately after the first infection, Martin is even now “on mattress relaxation 90{7b6cc35713332e03d34197859d8d439e4802eb556451407ffda280a51e3c41ac} of the time,” they stated. Martin gets food items stamps and Medicaid but doesn’t have aid spending for other essentials, these types of as gasoline. Their application for federal incapacity positive aspects has been denied twice.

“I am presently a year into the [application] system I have eight to 11 months remaining,” Martin mentioned. “I have $50 in my discounts account.”

Quite a few people today with extended covid really do not have the economical sources to employ the service of a attorney — or obtain to a physician who can assistance with their documentation, which makes the problem even more durable.

Client advocacy organizations are pushing for a a lot more economical software approach, distinct advice for officers who examine long covid instances, and faster eligibility for Medicare protection soon after a incapacity application is accredited. (The normal hold out is two decades.)

The organizations also provide as assist groups for folks with very long covid, sharing sources and providing reassurance that they aren’t by yourself. Some companies, these types of as the nonprofit Blooming Magnolia, even acquire funds for immediate distribution to individuals with extended covid. But people say these initiatives really don’t arrive shut to the scale of funding necessary.

Taveras, the Brooklyn mom, claimed she is aware lots of other men and women who are grappling with very similar concerns. “We’re making an attempt to get support from the govt, and we’re not having it,” she claimed. Taveras set up a GoFundMe page to ask for assistance for her family.

KHN (Kaiser Well being News) is a nationwide newsroom that creates in-depth journalism about well being difficulties. Jointly with Policy Evaluation and Polling, KHN is one of the a few key running courses at KFF (Kaiser Relatives Basis). KFF is an endowed nonprofit firm delivering data on wellbeing troubles to the country.

USE OUR Written content

This tale can be republished for free of charge (particulars).