Getting Disability Difficult for Those with Long-COVID - Those with Long-COVID Subject to Needing Long-Term Health Care

Fatigue, insomnia, shortness of breath, and "brain fog," are among the many symptoms of long-COVID. Those who are of working age often find it hard to qualify for social security disability. Many require long-term health care which not covered by health insurance.

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Getting Disability Difficult for Those with Long-COVID - Those with Long-COVID Subject to Needing Long-Term Health Care
6 Min Read December 1st, 2022

When Josephine Cabrera Taveras was infected with 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 for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long-COVID has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

"We are in the midst of possibly losing our apartment because we're behind on rent," said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Falling Through the Cracks

Like many others with long-COVID, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the COVID-19 pandemic. People are facing 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 have a uniform process for diagnosing long-COVID, according to health experts and disability attorneys.

The Biden administration promised support to people with long-COVID, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention defines long-COVID broadly, 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 a long-term loss of smell.

The Social Security Administration has identified about 40,000 disability claims that "include indication of a COVID-19 infection at some point," spokesperson Nicole Tiggemann said. How many people with long-COVID are among the more than 1 million disability claims awaiting processing by Social Security is unknown.

Disability Claims Increasing

In recent months, about 5% of new disability claims filed by Allsup, an Illinois-based firm that helps people apply for Social Security, involved people dealing with COVID, said T.J. Geist, a director at the firm. Other firms report similar figures.

The long waits for disability assistance often end in denial, in part because long-COVID patients don't have the substantial medical evidence that federal officials require, Geist said. There is no standard process for diagnosing long-COVID. Similarly, Social Security "has yet to give specific guidance on how to evaluate COVID-19 claims" for the government officials who review applications, he said.

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

Advocates suggest that many people with long-COVID have yet to recognize their need for government benefits and could start applying soon.

"I did not understand that I was disabled for four years because my ability would fluctuate so much," said Alison Sbrana, a patient advocate with the long-COVID support group Body Politic. She has a chronic disease whose symptoms are similar to long-COVID in many cases and has received Social Security disability payments for several years.

If you apply my timeline to people with long-COVID, 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.

Long-COVID New Disability

In July 2021, the Department of Health and Human Services formally recognized long-COVID as a disability. Expanding on the recognition, the department and the White House published a report in August 2022 that summarizes the "services and supports" available for people with long-COVID and others who have experienced long-term impacts from the pandemic.

But accessing support is not as simple as White House announcements may suggest. First, the July 2021 guidance recognized long-COVID under the Americans with Disabilities Act but didn't extend to the Social Security Administration, which runs benefit programs.

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

The application process is very demanding, very confusing for patients. It also entirely depends on you having this substantial breadcrumb trail of medical evidence.

Most applications are denied in the first round, according to Sbrana and other advocates. Patients typically appeal the decision, often leading to a second denial. At that point, they can request a court hearing. The entire process can take a year or more and usually requires legal assistance.

Brain Fog and Fatigue Can Be a Problem

The pandemic extended these wait times, as Social Security offices closed and did not quickly shift to remote operations. Moreover, common symptoms such as brain fog can make filling out online applications or spending hours on the phone with officials difficult.

Geist said that long-COVID patients who were hospitalized with severe symptoms can submit paperwork from those hospital stays and are more likely to receive benefits. But for the people who had mild cases initially or who have "invisible-type symptoms" like brain fog and fatigue, Geist said, documentation is more difficult. Finding a doctor who understands the condition and can sign off on symptoms may take months.

Amanda Martin, a long-COVID patient and advocate is one of those lost workers. Martin got COVID-19 in April 2020 while working as a subcontractor for the U.S. Navy and lost that job when they could not recover quickly.

At first, unemployment benefits provided support, but Martin's symptoms — including intense fatigue and brain fog — continued. 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, such as gas. Their application for federal disability benefits has been denied twice.

I am currently a year into the [application] process; I have eight to 11 months remaining. I have $50 in my savings account.

Disability Process and Waiting Period Can Last Two Years

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

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

The organizations also serve as support groups for people with long-COVID, sharing resources and providing reassurance that they aren't alone. Some organizations, such as the nonprofit Blooming Magnolia, even collect funds for direct distribution to people with long-COVID. But patients say these efforts don't come close to the scale of funding needed.

Taveras, the Brooklyn mom, said she knows many other people who are grappling with similar issues. "We're trying to get support from the government, and we're not getting it," she said. Taveras set up a GoFundMe page to request support for her family.

Brain Fog and Other Long-COVID Symptoms Can Create Need for Long-Term Health Care

Long-COVID symptoms of fatigue, insomnia, shortness of breath, and "brain fog," often lead people to need help with daily living activities or supervision due to the brain fog. Those with Long-Term Care Insurance will receive benefits to pay for the cost of the care, which over a long-term of time is not covered by traditional health insurance, including Medicare.

LTC Insurance will not replace income for those who are of working age, just as disability insurance or social security disability will not pay for care. Medicare will pay for normal health services but for long-term health care.

Medicaid will pay for long-term care services due to long COVID for any other reason but only for those with little or no income and assets. An added problem is you cannot purchase Long-Term Care Insurance if you already need care, as the policies are medically underwritten. 

Due to the fact that they frequently fall into the older age categories, may be fragile, and/or have chronic comorbidities, residents in long-term care facilities are at high risk for COVID-19 infection and for severe COVID-19 outcomes, including long-COVID.

Those older adults who are already receiving care at home are also at risk for COVID-19 infection from family and caregivers.

Medical experts still recommend vaccination and boosters to help prevent or reduce COVID-19 and its severity. Planning for long-term health care, either due to long-COVID or other chronic health issues, mobility problems, dementia, or frailty due to aging, is recommended as part of retirement planning well before someone retires.

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About the Author

Kaiser Health News (KHN) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

LTC News Contributor Kaiser Health News

Kaiser Health News

Contributor since November 10th, 2022

Editor's Note

When we think about long-term health care, we often think of older adults. While most people who need assistance with routine living activities or supervision due to dementia are older, not everyone who needs long-term care is older. 

Many people also confuse disability insurance and long-term care. Disability insurance, either through an employer, private policy, or through social security, replaces income (usually through age 65). Disability insurance does not cover long-term care services.

Is Disability Insurance from an Employer the Same as Long-Term Care Insurance?

Long-Term Care Insurance will provide the funds to pay for care, either at home or in a facility. These benefits are not covered by health insurance or Medicare. Medicaid will pay for long-term health care services, but only when someone has little or no income and assets. 

What Is Long-Term Care Insurance & What Does It Cover?

This is why Long-Term Care Insurance can be a very important part of your retirement plan. You can experience a decline in your health, chronic illness, accident, mobility issues, or dementia at any age. The risk of needing care does increase as you get older.

The consequences of long-term care on your family and finances can be devastating. Loved ones are usually untrained and unprepared to provide the very personal care that is often needed when you need long-term health care.

Don't forget adult children have their careers and family responsibilities to juggle on top of being a caregiver when they are placed in that position. Spouses are usually older and not the best caregivers. If a spouse is younger, they will usually still have to work. 

Long-Term Care Insurance will safeguard your 401(k) and other savings from the consequences of long-term health care, no matter the reason you may need care. The guaranteed tax-free funds will provide you with access to quality care and reduce the stress and anxiety otherwise placed on the rest of the family.

Keep in mind that LTC Insurance is medically underwritten. What this means is you must have reasonably good health in order to get a policy. You can't wait until you need the care to get coverage. 

What is Underwriting? How Does Current Health Impact Ability to Obtain Long-Term Care Insurance?

Most people get their coverage in their 50s as part of their retirement planning, although younger and older individuals can still usually find coverage, depending on their health. 

Premiums are affordable, especially if you are younger and healthy. Premiums vary depending on the insurance company, as much as 100% for the same coverage. It is important to seek the help of a qualified Long-Term Care Insurance specialist to help you find the right coverage at the right price based on your age, health, and family history. 

How Much Does Long-Term Care Insurance Cost?

Resources and Tools for Your Research on LTC NEWS

There is an immense amount of information available on LTC NEWS to assist you in your research. Planning for the costs and burdens of aging is a vital part of retirement planning. Here are some of the most used resources to help you:

If you have a loved one who needs care now, LTC NEWS can help. You can have access to free-no obligation case management. Plus, if your loved one has LTC Insurance, we can assist in processing the claim.

Filing a Long-Term Care Insurance Claim/Case Management

Reverse Mortgage Advantages

Today, many people have a significant portion of their savings in their homes. With today's reverse mortgages, you can leverage the equity in your home to pay for in-home care if you require it right away, fund a long-term care insurance policy, supplement your retirement income, and more.

In the LTC NEWS feature "Ask Mike," you can ask questions of Mike Banner, a columnist for LTC NEWS and the host of the television program "62 Who Knew". His knowledge of long-term care, retirement planning, caregiving, and reverse mortgages can be a useful resource.

Reverse Mortgages

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