Access to leave benefits for primary caregivers of children with special health care needs: A double bind

Objective: Family leave benefits are a key tool that allow parents to miss work to care for their ill children. We examined whether access to benefits varies by level of childcare responsibilities among employed parents of children with special health care needs (CSHCN). Methods: We conducted telephone interviews with 3 successive cohorts of employed parents of CSHCN, randomly sampled from a California children's hospital. At Wave 1 (November 2003 to January 2004), we conducted 372 parent interviews. At Wave 2 (November 2005 to January 2006), we conducted 396 parent interviews. At Wave 3 (November 2007 to January 2008), we conducted 393 parent interviews. We pooled these samples for bivariate and multivariate regression analyses by using wave indicators and sample weights. Results: Parents with more childcare responsibilities (primary caregivers) reported less access to sick leave/vacation (65% vs 82%, P <.001), access to paid leave outside of sick leave/vacation (41% vs 51%, P <.05), and eligibility for Family and Medical Leave Act benefits (28% vs 44%, P <.001) than secondary caregivers. Part-time employment and female gender largely explained 2 of the 3 associations between more childcare responsibilities and less access to leave benefits. Even in the context of part-time employment, however, primary caregivers were just as likely as secondary caregivers both to miss work due to their child's illness and to report being unable to miss work when they needed to. Conclusions: Due in part to employment and gender differences, leave benefits among parents of CSHCN are skewed away from primary caregivers and toward secondary caregivers. Thus, primary caregivers may face particularly difficult choices between employment and childcare responsibilities. Reducing this disparity in access to benefits may improve the circumstances of CSHCN and their families.