Disability Perspectives on Paid Leave: A qualitative analysis of leave-taking among workers affected by disabilities or serious health conditions

Setty, Suma; Koball, Heather; Hartig, Seth; Sutcliffe, T. J.

Study importance: This report presents findings from a ground-breaking qualitative research study on how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to directly hear from workers to specifically explore whether current paid and unpaid leave policies and programs meet the needs of the disability community. The study’s findings offer recommendations for ways in which policymakers, employers, and paid leave advocates can be more inclusive of the disability community to ultimately make paid leave accessible to all.

Methods: Researchers at the National Center for Children in Poverty in New York received funding from The Arc of the United States to conduct and analyze in-depth telephone interviews with 90 workers with a range of disabilities and/or serious health conditions and working caregivers in California, New Jersey, New York, and North Carolina. These states were chosen to represent a range of policy contexts. California, New Jersey, and New York have had long-standing temporary disability insurance programs and, in the past 2 decades, expanded these programs to offer paid family leave as well. North Carolina workers did not have any leave benefits or protections beyond the federal Family and Medical Leave Act, or (FMLA), unless their employers chose to offer them.

Findings: Major findings include:
• Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
• Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
• Workers highly value the FMLA and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
• Multiple barriers and gaps limit workers’ access to any type of leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Recommendations/Conclusions: Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Both federal and state policymakers and administrators of leave programs can apply these recommendations. These recommendations center on both the policy dimensions necessary for making a paid leave program disability-inclusive (e.g., anti-retaliatory provisions, job-protection, coverage for public and self-employed workers, hourly leave), and the administrative elements necessary for ensuring the success of such a program (e.g., simple application process and funding for outreach). Recommendations for employers aim to increase empathy in the workplace at low or no cost while increasing worker morale and loyalty. Recommendations for advocates center on the best ways to educate the disability community about available leave programs and their leave-taking rights. Ultimately, a comprehensive, national paid leave policy with disability-inclusive policy dimensions will improve access to leave for all workers.


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April 2, 2019


The report and a one-pager of the report is also available at