COVID Long-Haulers Will Require Better Coordinated Support

COVID Long-Haulers Will Require Better Coordinated Support

Jun 30, 2022
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Millions of Americans suffer from long COVID, a medical condition we are just beginning to understand that causes debilitating, long-lasting effects after a COVID-19 infection. Symptoms include fatigue, difficulty concentrating, shortness of breath, heart palpitations, and mood changes that can last for many months and affect your ability to work. Without a clear place for long-haulers to turn to for help, the federal government might consider the benefits of establishing a system-level approach that coordinates services focused on restoring function and employment.

The number of working-age people affected by long COVID and at risk of long-term work disability is far from certain, but it could be large. According to survey data collected in the first two weeks of June, 7.5 percent of adults currently have long COVID symptoms, which are symptoms that they did not have before their COVID-19 infection lasting three or more months after first contracting the virus. The percentage with long COVID is higher for working-age adults than it is for those age 70 and older.

The question of how to help workers keep their jobs when they experience medical conditions that put them at risk of prolonged work disability predates the COVID-19 pandemic. Many such workers have historically fallen through the cracks of a fragmented support system. They are too often left on their own to navigate uncoordinated services and programs that are poorly equipped to address their particular health situations and workplace challenges.

Long-haulers who struggle to return to work might seek benefits from Social Security Disability Insurance and Supplemental Security Income, the large federal disability programs administered by the Social Security Administration (SSA). Time will tell what the long-term administrative and cost implications are for these programs, but a flood of long COVID cases is likely to reverse the decade-long decline in Social Security Disability Insurance and Supplemental Security Income applications at a time when SSA is struggling to meet demand because of significant staff shortages, hiring challenges, and inadequate funding. Similar concerns might affect private short- and long-term disability insurers, workers’ compensation programs, and state temporary disability insurance programs.

Long-haulers might also seek to stay at or return to work if supports are available. Steady employment can provide financial and health care benefits as well as improved well-being and quality of life. Yet there is no clear place for long-haulers to turn to for medical care and employment supports. Employment supports are not integrated within medical systems or in the SSA disability determination process. Primary care doctors can order diagnostic testing and make specialty referrals, but, to date, there are no curative treatments for long COVID, and medical care is more likely to be focused on symptom management than restored function. Doctors can urge long-haulers to apply for disability benefits, but SSA and other insurers are unlikely to award benefits because there are no clear diagnostic markers or available tools yet for measuring disease severity and functional impacts.

The U.S. Department of Labor’s Retaining Employment and Talent after Injury/Illness Network (RETAIN) initiative provides a promising model for the type of coordination between medical and employment services that could help long-haulers return to their previous jobs or find new ones. RETAIN helps workers with recent injuries and disabilities stay in the labor force through early coordination of medical care and employment services, including enhanced communication among workers, employers, and health care providers, and improved access to rehabilitation services and job accommodations.

Mathematica is in the midst of evaluating how well RETAIN is meeting its goals, but evidence from a similar program in Washington State suggests there is a good chance that programs promoting coordinated care and use of best practices could prevent many COVID long-haulers from relying on long-term disability benefits. Although RETAIN does not specifically focus on COVID long-haulers, the initiative does focus on identifying workers at risk of exiting the labor force and becoming reliant on long-term disability programs. We expect many long-haulers residing in states with RETAIN grants would qualify for RETAIN services.

Many prominent medical institutions, such as Johns Hopkins Medicine and Mount Sinai, have already established multidisciplinary clinical programs to tackle long COVID. But long-haulers and their doctors are largely unaware of these programs. And even if these programs prove successful in restoring function, close coordination with employment services, as is done in RETAIN, might improve workers’ outcomes substantially.

The promise of early intervention programs such as RETAIN and the new clinical programs focused on long COVID provides an opportunity to match emerging evidence with coordinated supports. With all the uncertainty around the effects of long COVID, piloting early intervention programs that assess and support long-haulers could be important to help them remain in the labor force. Experience suggests that long-haulers are unlikely to receive the coordinated supports they need without a push from the federal government or some other cross-sectoral funder that can bring together the necessary partnerships. Without such supports, millions of long-haulers will likely fall through the cracks and lose their livelihoods, increasing the already substantial burdens on the U.S. labor, health, and welfare systems.

About the Authors

William Shaw

William Shaw

Associate Professor, University of Connecticut Health Center
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