Columbia University Mailman School of Public Health

Disability Perspectives on Paid Leave
A Qualitative Anaysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions

Authors: Suma Setty, Heather Koball, Seth Hartig, and TJ Sutcliffe
Publication Date: February 2019

The Arc/National Center for Children in Poverty Paid Leave Study

Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions presents ground-breaking research 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 specifically explore whether current paid and unpaid leave policies and programs meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more disability-inclusive and highlight the need for a comprehensive national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. 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 Family and Medical Leave Act (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 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.

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. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

This study was conducted in partnership with the Arc and was released on February 4, 2019. All materials are posted at http://www.thearc.org/paidleavestudy, including the report in high-resolution PDF or Word and a one-pager in PDF and Word.