The Disability Community Needs Paid Family and Medical Leave

A 10-year-old holds her younger brother, who has cerebral palsy, in their family's three-bedroom house in the Kenilworth neighborhood of Northeast Washington, D.C., December 2019.

While the United States lacks a permanent national paid family and medical leave policy, it is gaining increasing attention—especially during the COVID-19 pandemic—as a critical workplace protection and necessary part of the social safety net. Paid family and medical leave, which is separate from short-term paid sick days, allows workers to take extended time away from work to recover from a serious medical condition or to care for a new child or a seriously ill loved one without sacrificing their job or a paycheck. It is a vital support for workers with disabilities as well as for family members who care for people with disabilities.

New Center for American Progress analysis of the 2018 Family and Medical Leave Act (FMLA) employee survey found that workers who may have a disability are already taking leave, although they are less likely to receive pay and more likely to experience financial difficulty while on leave than all workers who take leave. Because paid family and medical leave can help ensure the employment, health, and economic security of people with disabilities, the policy must be considered a disability rights issue that is championed by advocates and policymakers.

Why paid family and medical leave matters to the disability community

People with disabilities—defined in the Americans with Disabilities Act as those having “a physical or mental impairment that substantially limits one or more major life activities”—may be more likely than people without disabilities to need paid family and medical leave. There are more than 6 million people with a disability in the U.S. labor force, and these individuals may need access to paid leave to take time away from work to care for their own health condition or to provide care for a family member. Additionally, the 61 million Americans with disabilities may need their family members to take paid leave to provide them with care related to their health condition. Moreover, the impact of the coronavirus could increase the number of people with disabilities who need paid family and medical leave, as a growing body of evidence shows that long-haulers—or those who continue living with symptoms in the aftermath of the coronavirus—and even people with mild COVID-19 symptoms experience long-term impacts to their health and well-being.

Despite the importance of paid leave for people with disabilities, the lack of a permanent national paid family and medical leave program means that they are left in a precarious situation. Nationally, only 21 percent of all civilian workers have access to paid family leave, and only 40 percent have access to short-term disability insurance. Workers with disabilities may be less likely to have access to paid leave because they are disproportionately employed in part-time and low-wage work, where less than 10 percent of the workforce has access to paid family leave.

Workers with disabilities may feel concerned that without paid family and medical leave, should they need time off to care for their health condition or a loved one, they would be fired due to ableism, or discrimination against people with disabilities. These stereotypes grounded in ableism include when employers believe that people with disabilities are not able to perform on equal grounds as people without disabilities or that they are too expensive to employ due to accommodation needs. While the Americans with Disabilities Act prohibits discrimination in employment, a paid family and medical leave program that includes job protection is critical to helping disabled people enter the labor market and stay employed. If workers with disabilities have access to a job-protected paid family and medical leave program, they know that they can take paid leave without stigma or fear of retaliation.

New findings accentuate importance of paid family and medical leave

Data from the most recent FMLA surveys, conducted in 2018—and published in July 2020—for the U.S. Department of Labor to understand how employees experience the FMLA, provide compelling evidence that people with disabilities need access to paid family and medical leave. The Center for American Progress conducted a new analysis of the survey, looking primarily at respondents who took medical leave in the past 12 months for an “ongoing health condition that affects one’s ability to work from time to time, such as diabetes, migraines, depression, or multiple sclerosis” as a proxy for disability status.* New findings from CAP’s analysis are presented below.

  • New CAP analysis found that nearly 16 percent of workers who took any leave in the past 12 months may have done so for a disability, taking medical leave for an ongoing health condition. Women and Black workers were disproportionately represented among those workers who took medical leave for an ongoing health condition in the past 12 months.**
  • There has long been an inaccurate assumption that people with disabilities are only recipients of care, not providers of care. But this new analysis found that 29 percent of workers who may have a disability—because they took medical leave for an ongoing health condition in the past 12 months—were also caring for one or more children under the age of 18.
  • People with disabilities may need greater direct care from their family to help manage their health condition and may therefore need family members to have access to paid leave for caregiving purposes. In fact, 29 percent of all workers who took their most recent leave for caregiving in the past 12 months were providing care for a person with an ongoing health condition, such as a disability.
  • Workers who took medical leave for an ongoing health condition were less likely than all leave-takers to receive pay while on leave and more likely to report financial difficulty to make ends meet while on leave, according to the new CAP analysis.*** This is especially challenging since people with disabilities already face high rates of poverty and numerous barriers to economic security. Lack of access to paid family and medical leave costs workers and their families an estimated $22.5 billion in lost wages each year.

These findings demonstrate that people with disabilities and their families need access to leave to be able to manage their own health—especially to be able to take leave intermittently for conditions that may flare or vary in severity—and to provide care or receive care from their family.

Paid family and medical leave must be inclusive of people with disabilities

The emergency paid leave laws passed by Congress in response to the coronavirus pandemic were an important first step toward a national paid leave program, but these laws are temporary, exclude millions of workers, and fall short of meeting the needs of people with disabilities. Specifically, the 12 weeks of emergency leave are limited only for child care purposes and exclude medical and caregiving leave, which are critical to support people with disabilities. Moreover, the emergency paid child care leave was initially limited to only parents of minor children; the U.S. Department of Labor later issued a rule that expanded it to parents of children 18 years of age or older and adults with disabilities who may have caregiver needs due to the impact of the coronavirus. The lessons from the emergency paid leave laws demonstrate that the United States needs a permanent paid leave program and that policymakers must ensure that it supports people with disabilities.

For a permanent paid family and medical leave policy to be disability inclusive, it should build on the comprehensive and inclusive paid leave policies passed in eight states and the District of Columbia—California was the first in 2002, building on its temporary disability insurance (TDI) program, followed by three more states with TDI programs and, more recently, states without TDI. Evidence from these state paid leave programs prove that they are successful in improving the health and economic security of workers in their states.

These state policies include key components that make them inclusive of people with disabilities, such as comprehensive purposes for leave, including medical and caregiving leave; expanded family definition to allow caregiving for extended and chosen family; and progressive wage replacement to ensure that low-wage workers can afford to take leave. Unfortunately, many federal paid leave proposals are half-measures because they only allow leave for parents caring for new children. Proposals that also seek to fund paid leave through cuts to workers’ Social Security retirement benefits would undermine Social Security—the very social safety net on which many people with disabilities rely. The Family and Medical Leave Insurance (FAMILY) Act, first introduced in Congress in 2013 and modeled on state paid leave policies, is the only federal proposal that is both comprehensive and inclusive.

Conclusion

Paid family and medical leave is a disability rights issue; a permanent national policy would be incredibly beneficial for people with disabilities and their families. The disability community should activate the same energy as they did to preserve the Affordable Care Act to support comprehensive and inclusive paid family and medical leave proposals, such as the FAMILY Act, in Congress. As people with disabilities enter the labor force or form their own families—whether chosen or biological—having access to a paid family and medical leave program would provide them the economic security and flexibility they need to center their own health or to care for loved ones.

Diana Boesch is a policy analyst for women’s economic security with the Women’s Initiative at the Center for American Progress. Rebecca Cokley is the director of the Disability Justice Initiative at the Center.

The authors would like to thank Shilpa Phadke and Sarah Jane Glynn for their contributions to this column.

*Authors’ note: The 2018 FMLA employee survey did not ask respondents if they identified as disabled. Given this limitation of the survey data, this analysis focused specifically on medical leave and those who had an ongoing health condition. The authors acknowledge that medical leave can be overly broad, as it may encompass people with lifelong disabilities, those who are newly disabled, and people without disabilities who have a serious medical condition. Similarly, the use of “ongoing health condition” may not represent all people with disabilities. CAP is committed to talking about disability following standard practice within the disability community.

**Authors’ note: CAP analysis of the 2018 FMLA employee survey found that among people taking medical leave for an ongoing health condition in the past 12 months, 61.2 percent were women, compared with 53.6 percent of all leave-takers being women. Black workers made up 21.9 percent of those taking medical leave for an ongoing health condition in the past 12 months, despite making up only 16.9 percent of all leave-takers.

***Authors’ note: CAP analysis of the 2018 FMLA employee survey found that among recent leaves taken in the past 12 months, only 59.2 percent of workers who took medical leave for an ongoing health condition received pay, compared with 71.5 percent of all leave-takers. Similarly, among recent leaves taken in the past 12 months, a greater share—79 percent—of workers who took medical leave for an ongoing health condition reported difficulty making ends meet during leave than did all leave-takers making ends meet during leave (67 percent).