Association for Public Policy Analysis & Management

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 solicit views from workers on whether current paid and unpaid leave policies and programs meet the needs of the disability community, especially among low-income families. The study’s findings offer recommendations for ways to ultimately make paid leave accessible to all.

Methods: Researchers at the National Center for Children in Poverty received funding from The Arc of the United States to conduct and analyze in-depth telephone interviews with 90 workers in California, New Jersey, New York, and North Carolina who identified as having a disability and/or serious health condition or who cared for someone with a disability and/or serious health condition. 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 those defined by the federal Family and Medical Leave Act (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.
• Low-income workers highly value how FMLA and state-administered paid leave options support their continued employment and financial stability.
• Workers who were aware of partially-paid state leave insurance programs generally viewed them as a last resort, preferring to first use fully-paid sick days, vacation days, or other employer-provided paid time off, if available.
• 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, low awareness and understanding limited access to the program, as did certain program features including 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, program administrators, employers, and advocates can make it easier for all workers to take leave from work to care for their health or the health of loved ones. Recommendations for state or federal policymakers and administrators 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 administrative elements that support program success (e.g., simplifying application processes and funding outreach). Recommendations for employers aim at increasing empathy in the workplace at low or no cost while increasing worker morale and loyalty. Recommendations for advocates focus on the best ways to educate the disability community about available leave programs and their leave-taking rights. The paper also details why a comprehensive, national paid leave policy with disability-inclusive policy dimensions would improve access to leave for all workers.