Pushing through cognitive impairment, migraines and severe fatigue, Michaelene Carlton, 49, mustered up the energy last week to dial the Social Security Administration to speak to her newly appointed Social Security Disability Insurance case manager. She has left six messages, one every two weeks since late December, and she still hasn\u2019t heard back.
\nCarlton, who says she has had long-term Covid-19 symptoms since March 2020, is one of up to 23 million Americans estimated to be living with post-acute sequelae SARS-CoV-2 infection. PASC is the medical name often given to Covid-19 symptoms that last or evolve after an initial infection. Those estimates are from the Department of Health and Human Services as of late last year.
\nThe chronic condition can include symptoms from memory loss and extreme fatigue to muscle weakness and musculoskeletal pain. Patients can struggle for months and even years, and many cannot work during that period.
\n\u5e7f\u544a
\nA study by The Brookings Institution found that as many as 683,000 workers may have had to leave the labor force due to long Covid as of October 2022.
\nPandemic issues and budget cuts at the Social Security Administration, which handles SSDI claims, have resulted in the lowest staffing levels in 25 years, according to the Center on Budget and Policy Priorities. That has kept long Covid cases backlogged.
\nDecision wait times for disability insurance can range from months to years, according to data from nonprofit think tank USA Facts. Rebecca Cokley, program director for disability Rights at the Ford Foundation, agrees the SSDI process is arduous and can last years before granting an applicant approval or denial.
\n\u201cAround 10,000 people die a year waiting for disability,\u201d Cokley said. \u201cWith long Covid, I only expect it to get worse.\u201d
\nCarlton says she has spent the last three months trying to find out the status of her disability application. Everything rides on whether she gets approved, Carlton told CNN. SSDI\u2019s monthly benefits are generally around $800 for individuals and $1,300 for families.
\n\u201cIt\u2019s my family\u2019s future,\u201d she said, \u201cI can\u2019t do much physically. I can\u2019t work. This way, I could at least contribute something. It would allow me to feed my family. But the system is broken.\u201d
\nLong Covid in the workforce
\nPeople with long Covid \u201cwere less likely to be employed full time and more likely to be unemployed\u201d due to the \u201cpresence of cognitive symptoms,\u201d according to a recent study in the medical journal JAMA Network Open.
\nA January study from the New York State Insurance Fund found that 18% of long Covid patients in that state have not been able to return to work for more than one year.
\nYet under the Americans with Disabilities Act, long Covid does not always qualify as a disability. People have to prove that it \u201csubstantially limits one or more major life activities.\u201d
\nIt\u2019s been nearly two years since Carlton sent her application for disability insurance in March 2021, which, she said, required sifting through medical records and employment history, conjuring up logins for each portal and requesting doctors to fill out forms.
\nAfter waiting eight months for a caseworker to take on her application, she said she discovered that person had resigned. Carlton was recently appointed a newer caseworker \u2014 the one she has not been able to reach.
\nA former special education teacher, Carlton said the funds could help pay her mortgage in Magnolia, Delaware, where she lives with her retired military husband, who works as a high school ROTC teacher, and their two college- and high school-age children.
\n\u201cThat extra little bit, even if it\u2019s small, would be a huge weight lifted off our shoulders,\u201d she told CNN.
\nEconomic impact
\nThe Department of Health and Human Services estimates $50 billion in annual salaries in the US is lost annually due to long Covid. A Brookings analysis puts that total at an even higher number: a staggering $170 billion lost by workers.
\nYet the government hasn\u2019t been vocal about the role Covid-19 plays in the economy. President Joe Biden has mentioned long Covid only twice since he was in office, once in his announcement in the Rose Garden in June 2021 when he said the condition \u201ccan sometimes\u201d qualify as a disability, and in September 2022 during an event for Disability Pride Month.
\nAnd two Congressional bills addressing the long Covid crisis \u2014 The \u201cCovid-19 Long Haulers Act,\u201d which would\u2019ve collected data on long Covid patients with the goal of creating better care and treatment, and \u201cThe Care For Long Covid Act\u201d would\u2019ve improved research, centralized data and resources for people with Long Covid \u2014 died without making it out of committee.
\n\u201cCovid no longer controls our lives,\u201d Biden said earlier this month in his State of the Union address, echoing previous comments from Federal Reserve Chairman Jerome Powell, who said the central bank no longer considers Covid an ongoing economic risk.
\nBut for many long Covid patients, it remains an ordeal on many levels, including the mental anguish of simply trying to cut through a notoriously bureaucratic federal disability application process.
\n\u201cI feel like we\u2019re being erased,\u201d said Sarah Steinberg, 40, a Covid \u201clong-hauler\u201d and self-employed architectural designer. Disabled by long Covid since March 2020, she lives with her spouse and their 7-year-old son in Portland, Ore.
\nUnlike workers whose jobs offer benefits packages, some freelancers like Steinberg say they find themselves locked out of benefits like health, dental, life, and short- and long-term disability insurance.
\nSteinberg takes occasional gigs, but said she\u2019s lost work opportunities because her symptoms, including cognitive deficits and severe fatigue, cause her to make mistakes. Now, her husband carries the financial burden alone.
\n\u201cIt\u2019s going from a two-income household to one-income \u2014 it changes what we buy and our ability to spend money,\u201d said Steinberg. \u201cWe didn\u2019t design our life to be a single-income household.\u201d
\nOther long Covid patients have rearranged their finances, too. Carlton and her husband have stopped contributing to their children\u2019s college savings accounts and are no longer saving for retirement.
\n\u201cMy son stayed home and doesn\u2019t live on campus since we can\u2019t afford it,\u201d she said. \u201cHe checks on me before his commute to see if I need water, anything, because I may be in bed that entire day. It\u2019s sweet but he should be enjoying his life being a college kid.\u201d
\nA fork in the path to approval
\nSome long Covid patients whose jobs offer benefits packages say they have found the disability process easier to navigate.
\nTy Godwin, 60, a former triathlete and software sales executive in Denver, was just awarded disability benefits. However, to make ends meet while waiting for the decision on disability approval, he and his wife rented out their home and stayed with family. He says he has been disabled by Covid since early 2020.
\nOther than one demanding four-hour neuropsychiatric evaluation, he said, he breezed through the application process \u2014 mostly because his employer\u2019s disability insurance paid for an attorney. Godwin let his lawyer handle the majority of the paperwork and didn\u2019t end up paying out of pocket for legal representation.
\n\u201cThere\u2019s an incentive [for the company] to pay for a lawyer because it\u2019s less that they have to pay out each month if I\u2019m awarded,\u201d said Godwin. His company\u2019s private long-term disability insurance pays a smaller percentage of the monthly benefit payout when federal disability pays a portion.
\n\u2018Expect you\u2019re going to be denied\u2019
\nTo break through the red tape, the majority of applicants are all but forced to hire legal representation, say Cokley and Nancy Cavey, a disability attorney in St. Petersburg, Florida. The attorney fee is 25% of back pay, or up to $7,200, whichever comes first.
\n\u201cI tell my clients, \u2018Fully expect you\u2019re going to be denied,\u2019\u201d said Cavey. \u201cThat\u2019s, unfortunately, just the process.\u201d
\nOne reason could be that nearly three years into the pandemic, long Covid still isn\u2019t included on SSA\u2019s listing of qualifying disabilities. When Cavey argues a case in court, she has to describe the systems affected: neurological, digestive, pulmonary, cardiac and more.
\nThe Social Security Administration acknowledged that applicant wait times for disability benefits are \u201cfar too long,\u201d adding that long Covid patients \u201cface the same process and wait times as other applicants.\u201d
\n\u201cWe are laying the foundation for improved services by rebuilding our workforce, after ending 2022 at our lowest staffing level in over 25 years driven by years of funding levels below the President\u2019s Budget,\u201d SSA stated in an email to CNN. \u201cHowever, it will take time and resources for these new hires to become proficient.\u201d
\nThe agency stated they have \u201cflagged about 47,500 disability claims nationally that include induction of a Covid-19 infection at some point,\u201d but did not state that those cases included long Covid.
\nA quarter of Cavey\u2019s inquiries and cases now, she said, are about long Covid or Covid-19 complications.
\n\u201cThey\u2019re not only dealing with long Covid complications, but they\u2019re dealing with financial complications,\u201d she said of her clients. \u201cThey have the feeling of, \u2018What do I do next? This is who I am. I need to provide for my family, and I don\u2019t know how to proceed.\u2019\u201d
\nThere\u2019s also a fight against the clock. Once applicants are denied, they must file an appeal within 60 days, or the case can get thrown out. The nature of Long Covid, which can affect cognitive function including speech and attention difficulty, makes this particularly challenging.
\nSteinberg said she scrambled to hire an attorney when she discovered the deadline. Yet when she called, she was warned \u201cpost-viral cases\u201d like hers don\u2019t often win.
\n\u201cI want to be working,\u201d she said. \u201cI don\u2019t want to be on disability, but I spent $17,000 on medical expenses last year trying to get better. If I didn\u2019t have support and savings, I\u2019d be on the streets.\u201d
\nDisability experts like Cokley are familiar with the process.
\n\u201cTrying to apply for SSDI makes doing your taxes look like a kindergarten watercolor painting,\u201d she said. \u201cIt\u2019s well known that you usually have to apply multiple times. It can take years.\u201d
\nCarlton, who calls herself her \u201cown best advocate,\u201d has chosen not to hire an attorney because she can\u2019t afford to lose the 25% of her award. She continues trying to break through the system, calling the SSA office and scouring tips on social media \u2014 and coming to terms with a heartbreaking reality.
\n\u201cI used to run my kids to soccer practice. I was able to see their games,\u201d Carlton said, through tears. \u201cI was a good mom. I was the mom, you know? Now I\u2019m the mom who can\u2019t get out of bed or off the couch. And it\u2019s so frustrating to have no [financial] support.\u201d<\/p>\n
CNN<\/p>\n
Tags:social security<\/p>\n","protected":false},"excerpt":{"rendered":"
Pushing through cognitive impairment, migraines and severe fatigue, Michaelene Carlton, 49, mustered up the energy last week to dial the Social Security Administration to speak to her newly appointed Social Security Disability Insurance case manager. She has left six messages, one every two weeks since late December, and she still hasn\u2019t heard back. Carlton, who […]<\/p>\n","protected":false},"author":6,"featured_media":6429,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1155,1154],"tags":[2604,2389,1746],"class_list":["post-6428","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-business","category-trending","tag-disability","tag-security","tag-social"],"_links":{"self":[{"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/posts\/6428","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/ustower.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=6428"}],"version-history":[{"count":1,"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/posts\/6428\/revisions"}],"predecessor-version":[{"id":6430,"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/posts\/6428\/revisions\/6430"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ustower.net\/index.php?rest_route=\/wp\/v2\/media\/6429"}],"wp:attachment":[{"href":"https:\/\/ustower.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=6428"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ustower.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=6428"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ustower.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=6428"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}