Long COVID is increasing housing insecurity, but support programs fail to help

Robert DeRosa first developed Long COVID in 2021 and began facing severe financial hardship and housing insecurity. Two years later, in 2023, Atlanta-area police forcibly evicted him from his home. 

“I was with my dog, it was pretty horrible,” he said.

That experience left DeRosa with few options, as he had already spent months getting by on savings and credit cards. 

A Georgia-based rent program had prevented his eviction in 2022, but when that funding ran out and he lost his home, he was forced to move back to Canada. It took him ten days to make the normally 20-hour drive due to his debilitating Long COVID symptoms.

Now living with his father in Hamilton, Ontario, DeRosa says that his biggest challenge is wading through the mountain of administrative work that comes with being disabled and seeking out the few support options that do exist. 

“The system just expects and relies on people to have family and friends and other people to pick up the slack,” DeRosa said. “And it’s made my health worse.”

DeRosa has a master’s degree in public policy; without that educational background, he said, he likely wouldn’t even know that support options are available, such as his province’s Ontario Disability Support Program (ODSP).

A growing body of research shows that Long COVID, combined with a lack of government support, leads to financial insecurity and housing instability. Disability claims have been on the rise since the start of the pandemic, many of them by the more than 20 million people with Long COVID in the United States. But the process to obtain those benefits remains dehumanizing, agonizing, and frustrating, with many applications ending in denial.

Those who spoke to The Sick Times for this story describe an environment in which housing is scarce, support is hard to come by, and financial and housing insecurity have left many in dire straits.

Growing research links Long COVID and housing insecurity

Research is starting to reflect what advocates have pointed to for years: a connection between Long COVID and housing insecurity. One 2024 study published in Disability Health Journal led by University of Kansas researcher Kelsey Goddard found that people with Long COVID experience housing instability at a higher rate than people with other disabilities. In a survey of about 1,500 people with disabilities, Goddard and her colleagues found that 21% of those with Long COVID reported housing insecurity, compared to 8% for those without. 

People with Long COVID face a “unique set of challenges” with housing, Goddard said in an interview. When their existing housing is inaccessible, they have to consider moving or making modifications.

Housing insecurity is understudied both for Long COVID and disability communities more broadly, despite a sizable increase in the number of disabled people since the start of the pandemic. 

But some research has shown how this insecurity leads to other challenges. One 2024 study from researchers at the University of Georgia found that having Long COVID increased food insecurity by ten percentage points among those with the lowest incomes. Another study in the U.K. found that Long COVID increased both financial insecurity and the need to claim social benefits. 

Research also shows that unhoused people experience a higher rate of disability than the rate in the general population. The issue is cyclical: on top of disability contributing to housing insecurity, living with a precarious housing situation puts you at additional risk for COVID-19 complications and developing Long COVID.

Many disabled people are forced out of housing if they make requests for accessibility, as landlords often discriminate against them, said Kirstin Yuzwa, an occupational therapist at Sunnybrook Research Institute in Ontario, Canada, who studies accessible housing needs for Canadians with disabilities. For example, those who are new to using mobility devices — a reality for some people with Long COVID — may risk being evicted for requesting access improvements, such as a ramp or a bathroom grab bar, she said.

“Some people are afraid to even ask for accessibility-related changes because they may be worried about eviction,” she said.

Another challenge: The wait time for government assistance programs like Social Security Disability Insurance is prohibitively long, and people are left to fend for themselves in the interim. And people with Long COVID often meet denials at the end of that wait. 

During that uncertain period, people are  “unable to work, they’re not getting income, they’re literally selling their belongings just to survive,” Goddard said.

Some people are afraid to even ask for accessibility-related changes because they may be worried about eviction.

Kirstin Yuzwa, Sunnybrook Research Institute

The nonexistent safety net

Before developing Long COVID, Sue Poncin didn’t see housing insecurity as even a faint possibility for her or her family. That has changed.

“Even if you do everything, quote-unquote, ‘right’ … it doesn’t take very long to turn it upside down,” she said. “We became upside down within a year of losing pay.”

The Illinois teacher hasn’t been able to work for eighteen months due to Long COVID. While she and her husband have managed to cobble together enough money to survive thus far, Poncin is contemplating moving away from the home she’s owned for 16 years. She would leave a place that was supposed to be the foundation of her and her husband’s retirement.

Similarly, when Amanda Finley — who has had Long COVID since 2020 — found out that she had finally secured employment, she was living in a tent.

Since developing Long COVID, Finley bounced between having housing, staying with friends, and sleeping in her tent.

“I had housing insecurity even going into the pandemic,” Finley said, and it feels like a challenge she can’t fully escape even when she is employed.

Finley has found very little crossover between mainstream housing advocates and those who are more focused on disability. Her advice? Go to your social media platform of choice and make your presence known. In her words, “Get loud on socials.”

Even if you do everything, quote-unquote, ‘right’ … it doesn’t take very long to turn it upside down.

Sue Poncin, teacher with Long COVID

A lack of programs for people with Long COVID

Emi Kane, director of the advocacy group Long COVID Justice*, faced her own share of housing insecurity that was exacerbated by COVID-19. She moved 40 times between 2020 and 2021, she said, finding herself “excluded from people’s households or pods because of my specific needs around COVID safety.”

Support options are limited for people with Long COVID facing housing insecurity, according to Kane and her colleague Gabriel San Emeterio, who is a senior fellow at Long COVID Justice. “The only strategies outside of the scant government safety net options are crowdfunding and mutual aid,” they wrote in an email.

There are some government models that could be expanded, such as Section 8 housing, a federal program that provides housing assistance for those deep below the poverty line, or New York City’s HIV/AIDS Services Administration, a web of housing supports for those with HIV/AIDS. But these offerings come with restrictive requirements and limited resources, including “abysmal” income limits (as Kane and San Emeterio put it).

Disability advocates could also join forces with the tenants’ rights groups advocating for rent freezes, Kane and San Emeterio suggested: “New York has a program that freezes rent for disabled people and older adults. This model should be expanded to include those with high medical expenses due to chronic illnesses like Long COVID, even if they don’t qualify as disabled.”

Ontario’s Disability Support Program, from which DeRosa now receives funding, is another example of insufficient help. The extended medical coverage it provides doesn’t apply to all his medications, many of which are not formally approved for Long COVID and thus considered off-label, he said.

The wait for housing in DeRosa’s area is around a decade long, he said. In order to be fast-tracked, he would need to move from his family’s home into a shelter — which he currently isn’t interested in exploring. He wishes these systems, especially for those with Long COVID, didn’t require people to go down to “rock bottom.” He’d like to see different support frameworks talk to one other rather than leaving the burden on the individual.

“There’s only so much trauma I can take at one time,” he said, “and luckily I have my father that will keep a roof over my head for now.”

There’s only so much trauma I can take at one time … and luckily I have my father that will keep a roof over my head for now.

Robert DeRosa, Person with Long COVID

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John Loeppky is a disabled freelance journalist currently living and working on Treaty Six Territory in Saskatoon, Saskatchewan, Canada. You can find more of his work at Jloeppky.com/portfolio, where you will discover that his goal in life is to have an entertaining obituary to read.

*Editor’s note: The Sick Times partnered with Long COVID Justice on the Long COVID Essentials resource series. Our newsroom operates independently of financial supporters.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.

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