Authors’ note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this report, the terms are used interchangeably.
Introduction and summary
Burnout,1 quiet quitting,2 and labor shortages3 have all been repeated in news headlines in the past few years. But underneath these clickbait perspectives on the labor market is something that should be much more concerning: Americans are in the thick of a mass disabling event4—one of the largest since the AIDS5 and polio6 epidemics—due to post-COVID-19 symptoms creating a condition known as long COVID. In the face of an increasing casualty count and so-called labor shortages,7 it is essential that employers reevaluate their workplaces to create more accommodative workplaces. By centering accommodations and worker benefits that are perceived as only helping disabled workers, workplaces become better for all workers.
This report utilizes new data from the U.S. Census Bureau’s Household Pulse Survey (HPS)8 to find that in early to mid-October 2022, 17.3 million adults reported experiencing long COVID, with significant employment gaps surfacing. The failure of employers and policymakers to better accommodate disabled people in the labor market9 also represents a major drag on the economy, particularly as poor accommodations decrease employers’ ability to access the full pool of talent available.10 This is not just important for the economic security of disabled workers who have long faced barriers to equitable employment,11 but also beneficial to all workers and employers who are seeking to fill record-high job vacancies.12
While there is no doubt that the coronavirus and long COVID are already having significant impacts on the U.S. labor market and economy more broadly—a Harvard researcher predicted the total economic cost associated with long COVID to be $3.7 trillion13—employers and policymakers must meet the moment and work to re-imagine workplaces for the benefit of all people. They can do this by:
- Increasing the minimum wage, including eliminating the subminimum wage
- Standardizing workplace accommodations
- Guaranteeing paid family and medical leave
- Increasing workplace safety standards, including improving air quality standards and avoiding repetitive work injuries
- Investing in job retraining, stay-at-work, and return-to-work programs
- Passing the Protecting the Right to Organize (PRO) Act
- Strengthening health insurance options outside employer-based health insurance
- Improving data collection on disability, including long COVID
Long COVID continues to be widespread
Long COVID, also known as post-COVID conditions, occurs when an individual has symptoms for at least three months since their initial infection.14 Analysis of the HPS data shows that from October 5 to October 17, 2022, approximately 89 percent—or 17.3 million people age 18 or older—of all those in the United States who currently have symptoms have been symptomatic for at least three months after having COVID-19.15 This represents nearly half of all those who have ever had long COVID and 7 percent of all adults in the United States.16 (Figure 1) Women, Hispanic people, and people younger than age 65 are currently disproportionately burdened by long COVID in this country.17 (Figure 2) This is due to a variety of factors rooted in systemic inequity, including higher rates of COVID-19 contraction;18 overrepresentation in in-person, low-paid work;19 inaccessible testing and treatment; and less access to resources in general.20
Long COVID is widespread and affecting every single state.21 (Figure 3) In early to mid-October in Alabama, for example, about 97 percent—or 290,218 people—of all people who had reported experiencing COVID-19 symptoms had done so for at least three months.22 Despite being on the lower end proportionally in terms of total long COVID cases, in Massachusetts, more than 86 percent—or 384,267 people—of those with COVID-19 symptoms had also experienced symptoms for at least three months.23 This difference in prevalence of long COVID may be partly explained by vaccination rates, with vaccination shown to help prevent long COVID symptoms and reinfection.24 As of October, 90 percent of Massachusetts’ adult population received at least their first series of the COVID-19 vaccine, while only 62.6 percent of Alabama’s adult population received their first series of shots.25
People with long COVID are likely to be employed, but many still face difficulties
In early to mid-October, more than 10 million people26 currently with long COVID were employed—accounting for 59 percent of those with long COVID, which is comparable to employment rates among the general population. (Figure 4)
However, for those ages 25 to 54, the population most likely to be employed, employment rates differ greatly: While 69 percent of those in this age group with long COVID were employed, the employment rates among those in this age group without long COVID were higher, at 75 percent. Put another way, if employment-to-population rates for those with long COVID in this age group were the same as they are for the general population, more than 500,000 additional people would be employed.
Figure 4
This significant gap in employment among the cohort most likely to be employed is not surprising. In early to mid-October, 1.6 million people reported not working because they were caring for someone, or sick themselves, with COVID-19 symptoms.27 Most importantly, those with long COVID are likely to report difficulties that will affect their capacity to work. For those who have experienced COVID-19 symptoms for at least three months, their most common and notable reported difficulty has been an inability to remember or concentrate.28 Additionally, 79.5 percent—or 13.8 million people—of those with long COVID reported that their symptoms have affected their ability to carry out day-to-day activities at least “a little,” likely having an impact on their ability to work. While difficulties with day-to-day activities are widespread within the long COVID population, they are slightly more common among those currently with long COVID who are not employed, particularly those of working age.
In early to mid-October, 1.6 million people reported not working because they were caring for someone, or sick themselves, with COVID-19 symptoms.
For those already and continuing to be employed, long COVID may have caused them to reduce their work hours; 7 percent of employed people in October were experiencing long COVID. Researchers have already found that more than half of adults with long COVID who were employed prior to infection are currently out of work or have reduced their working hours.29 Further, for those with unrealized employment goals, long COVID has likely added an additional barrier to finding, staying, and thriving in work. For individuals with a high risk of contracting long COVID, including disabled people, the threat of long COVID may further inhibit their ability to look for and find work, particularly in in-person occupations. In early to mid-October, 1.1 million people were not working due to concerns about getting or spreading COVID-19.30
As coronavirus precautions diminish, long COVID will only grow, with an even greater impact on the labor market and economic security.
Workplaces have long failed to accommodate disabled people
The rise of long COVID will likely mean larger populations of disabled people in the workplace and among those with unrealized employment goals. However, for disabled people, the labor market has never really worked and continues to showcase the persistence of systemic ableism. Across gender, race, ethnicity, LGBTQI+ status, and age, disabled people in the United States are less likely than nondisabled people to be employed;31 many more may want to work, but workplaces often neglect to offer appropriate accommodations that allow them to fulfil their employment goals.32 Unfortunately, policymakers also fail to offer appropriate worker protections. When disabled workers do work, they often earn lower incomes and accumulate less wealth than those without disabilities. Disabled people who are also part of another marginalized group, such as disabled people of color or disabled LGBTQI+ people, tend to experience large employment, wage, and wealth gaps as they bear intersecting and compounding systems of oppression.33 Again, these are the very same groups of people disproportionately burdened by long COVID, which is exacerbating existing inequities.
A disability lens is crucial to rethinking workplaces
As the disability community continues to grow partly due to long COVID,34 employers must re-imagine workplaces with a focus on disability-forward policies and creating inclusive environments. Designing policies and environments with the most affected in mind can greatly improve the experience for all workers and create a curb-cut effect.35 The term “curb-cut effect” comes from when policymakers noticed how creating ramps on curbs to allow disabled people the ability to transport themselves more independently actually helped other communities, including families with strollers and bicyclists. The curb-cut effect proves that policy designed to support one community can have broader benefits for others rather than harming or taking away from another community.
The disability community is large and diverse, which means the community has varying needs. This initially required disability policies such as the Americans with Disabilities Act (ADA) to be broad in order to be more inclusive. Today, it requires businesses; organizations; local, state, and federal governments; and employers to be more flexible in order to provide specific accommodations for disabled employees and customers. Utilizing a disability lens when designing workplace policies requires flexibility, and that is what workplace policies and environments should become in order to deal with the influx of disabled workers—some of whom may have no medical documentation proving their disability.36 This will help keep employees working and encourage people back, or newly, into the workforce.
Recommendations
U.S. policymakers, unions, and worker rights groups can work together to meet the moment and realize their capacity to utilize a disability lens to improve federal workplace protections, not only for disabled people, but for all workers. These efforts must ensure that when people need to take time off to look after themselves, they receive a continued income stream, and when they are working, they are necessarily accommodated, safe, protected, and earning living wages.
Increasing the minimum wage, including eliminating the subminimum wage
In addition to raising the minimum wage from its federal level of $7.25 per hour, it is long past time to eliminate the exclusions from the minimum wage experienced by several groups of workers—disabled workers among them. Disabled workers, particularly those with significant disabilities, are often relegated to work at organizations that utilize a little-known section of the Fair Labor Standards Act known as 14(c). Section 14(c) is based on the ableist notion that disabled people’s work is less worthy, creating nonintegrated workshops that require dull, repetitive labor.37 From 2017 to 2018, employees affected by the 14(c) exception received an average of $3.34 per hour and worked around 16 hours per week.38 It is important to recognize all labor as worthy. Policymakers must eliminate subminimum wages and increase the federal minimum wage to at least $15 per hour.39
Standardizing workplace accommodations
Workers with documented disabilities have the right to receive workplace accommodations through the ADA. However, employers often require workers to provide unnecessary medical documentation that can become burdensome and invasive,40 including asking workers to get extra medical examinations or requesting full medical records when a letter from the doctor summarizing symptoms and accommodation needs would likely suffice. Many employees do not know their rights41 or forgo accommodations due to the stigma around disability.42 This can leave them vulnerable and result in termination or career stagnation. Providing workplace accommodations to all employees by individualizing plans can help reduce the stigma of utilizing accommodations and increase workplace satisfaction. For example, before the COVID-19 pandemic, remote work was a common accommodation utilized by disabled employees.43 Now, since the pandemic began, remote work is available to more employees. Studies showed that productivity has actually increased with remote work and improved worker satisfaction.44
Guaranteeing paid family and medical leave
Paid family and medical leave often focuses on caregivers. But disabled workers need paid family and medical leave to deal with their own expected and unexpected medical issues—and yet they are less likely to have comprehensive paid leave,45 resulting in lost wages46 and quitting.47 As the COVID-19 pandemic continues to evolve in new and unpredictable ways and other epidemics48 and pandemics49 lurk on the horizon,50 the government must guarantee paid family and medical leave, ensuring enough time off for caregiving and medical leave.
Increasing workplace safety standards, including air quality standards
Workplace safety standards help protect employees from becoming disabled and ensure that disabled people have the ability to work.51 Currently, many workplace safety issues are only investigated after accidents that a worker experienced while on the job, leaving them disabled and often without work. However, workplace safety standards can also help prevent disability and allow disabled people to work. Workplace safety should be better monitored before injuries occur.52 For example, there should be a general standard for indoor air quality, particularly in areas that are often poorly ventilated. The Occupational Safety and Health Administration (OSHA) currently has vague standards for indoor air quality even after a major airborne pandemic.53 One of the ways to reduce the spread of the coronavirus, which can be a workplace hazard,54 and to prevent long COVID is to improve air quality.55 The utilization of carbon dioxide monitors can help determine air quality and COVID-19’s ability to spread in an indoor environment.56 OSHA should create a standard carbon dioxide level in all indoor work facilities. It could also encourage usage of portable high-efficiency particulate air fans and filtration systems, require monitoring of heating, ventilation, and air conditioning systems to ensure they operate correctly.57 While disabled workers can request accommodations to improve air quality near their workstation, improving air quality in all work areas would help all workers reduce their risk of COVID-19, long COVID, and other aerosol contaminants.
Investing in job retraining, stay-at-work, and return-to-work programs
Disabled people experience significantly more difficulty keeping their employment. Before the pandemic, more than 2 million workers left the workforce due to injury or illness every year.58 Research indicates that early intervention, mentorship, and coaching services can help employees retain employment, return to work, and gain advancement.59 Programs such as employer resource networks (ERNs) may provide the services needed to help individuals with long COVID and others who were stressed or displaced during the pandemic.60 ERN centers exist in only 12 states61 yet show some promise for improving employee retention—such as by providing on-site case management, funds for education and skills training, and help coordinating support services through a public-private partnership.62 More research needs to be done on ERNs and other programs focused on job retention. These programs should be expanded to all 50 states, Washington, D.C., and the U.S. territories, with increased investment at the federal and state levels. Federal grants through the Workforce Innovation and Opportunity Act’s adult and vocational rehabilitation programs could help cover many of the costs. States could also utilize education and training funds through the Temporary Assistance for Needy Families (TANF) program to help to expand ERNs or similar programs.
Passing the PRO Act
Measures to strengthen worker rights to help improve worker protections and benefits have their roots in part from efforts led by workers who became disabled due to unsafe work environments.63 Unionization, for example, helped ensure workers receive compensation after workplace injuries.64 The fight for worker protections came about during the Industrial Revolution in the late 1800s after blatant workplace safety hazards that caused temporary and permanent disabilities.65 Private sector unionization rates declined significantly since the middle part of the last century, in part due to enactments of anti-worker laws at the federal, state, and local levels.66 However, Americans’ support for unions is at its highest point in decades, and new worker organizing campaigns gained significant traction during the pandemic.67 The PRO Act would help ensure that workers who want to collectively bargain are able to do so, including by correcting many flaws in U.S. labor law that anti-union corporations use to block workers from organizing; stopping the illegal misclassification of workers as independent contractors that prevents them from exercising their bargaining rights; and ensuring that workers can bargain with all corporations that control the terms and conditions of their employment.68 Passing the PRO Act has significant implications for disabled workers, who benefit greatly from better benefits as well as better protections, as they are often the “last hired, first fired.”69
Strengthening health insurance options outside employer-based health insurance
It remains essential, particularly since the pandemic, that workers have stronger coverage options outside employer-sponsored health insurance. The federal government should continue to encourage the remaining 11 holdout states to adopt the Affordable Care Act’s Medicaid expansion in order to close the coverage gap and extend comprehensive and affordable coverage to millions.70 States should also take action to make marketplace coverage more affordable. Several states have enacted state-funded assistance for marketplace coverage to supplement the federal premium tax credits and cost-sharing reductions and further improve affordability and accessibility of marketplace coverage.71 In 2021, Connecticut launched the Covered Connecticut Program, which pays for monthly premiums and cost-sharing amounts for residents with household incomes up to 175 percent of the federal poverty level (FPL) who are eligible for federal premium tax credits, cost-sharing reductions, and enrolled in a silver-level plan.72 The Massachusetts ConnectorCare state cost-sharing subsidy is available to residents with incomes lower than 300 percent of the FPL and is applied to silver plans.73 The subsidy lowers copay amounts for benefits, including primary care and specialist office visits, urgent care, and diagnostic imaging.
Improving data collection on disability, including long COVID
Data on disability are scarce. Data that include disaggregation are even scarcer.74 It is essential that the government, employers, and organizers collect and analyze disaggregated disability data to better understand how policies affect this marginalized community, including collecting data on the prevalence and impact of long COVID.
Conclusion
The COVID-19 pandemic and tight labor market have challenged employers to make adjustments, such as instituting flexible work hours and allowing people to work from home. It also led to a resurgence in support for unions75 and interest in organizing, a push for higher wages,76 and more options on where people can live and work. As increasingly more people likely have a disability due to long COVID, it is essential that employers, policymakers, and unions reevaluate how people work and push for policies that center disabled workers. Utilizing a disability lens when discussing changes to workplace environment and policy can improve the lives of all workers, removing barriers and obstacles that may have previously been invisible or hidden.
Acknowledgments
The authors would like to thank Lily Roberts, Natasha Murphy, Emily Gee, Jill Rosenthal, Karla Walter, Molly Weston Williams, and Nicole Ndumele for their helpful feedback. They would like to thank Camila Garcia for her helpful research assistance and Emily DiMatteo for her thorough fact-checking.
Methodology
In April 2020, the U.S. Census Bureau launched the Household Pulse Survey to report nearly real-time data on how COVID-19 has affected people’s lives. Since June 2022, there have been three iterations of the HPS that include questions related to long COVID:77
- “Did you have any symptoms lasting 3 months or longer that you did not have prior to having coronavirus or COVID-19?”
“Long term symptoms may include: tiredness or fatigue, difficulty thinking, concentrating, forgetfulness, or memory problems (sometimes referred to as “brain fog”, difficulty breathing or shortness of breath, joint or muscle pain, fast-beating or pounding heart (also known as heart palpitations), chest pain, dizziness on standing, menstrual changes, changes to taste/smell, or inability to exercise.”
- “Do you have symptoms now?”
- “Do these long-term symptoms reduce your ability to carry out day-to-day activities compared with the time before you had COVID-19?”
The authors define people currently with long COVID as individuals who are experiencing COVID-19 long-term symptoms that are listed above and that have lasted for three months or longer. They define employed people as those who answered yes to: “In the last 7 days, did you do ANY work for either pay or profit?”78 The data used in this column were collected during week 50, or October 5 to 17, of Phase 3.6 of the HPS and included observations from 42,040 adults 18 and older. Data on the HPS’ detailed methodology is available publicly on the Census Bureau’s website.79