Family caregiving and employment among parents of children with disabilities on SSI

Abstract

Parental and family inputs are particularly important for children with disabilities receiving benefits from the Sup- plemental Security Income (SSI) program. These children often need disability or health-related care, and nonfamily sources provide only limited access. This is the first study to analyze family and nonfamily caregiving for these children with disabilities based on nationally representative quantitative data from the National Survey of SSI Children and Families (NSCF), a survey focusing on SSI recipient children with disabilities. The data suggests substantial variability in the need for caregiving among children on SSI. We find that there is also substantial variation in family inputs related to parental education, living arrangements, the presence of other children of preschool age and other factors that affect the quality and quantity of caregiving. Our analysis confirms that family caregiving is much more substantial for these children than nonfamily caregiving, and that caregiving from both sources is associated with various indicators of the nature and extent of disabilities. We find some - but weaker - evidence of an association between the child's disabilities and parental employment. Overall, while there is some substitution between parental employment and caregiving there appears to be a substantial net burden on the family arising from the child's needs for caregiving. We also find that there are significant predictors of family caregiving and parental employment that are unrelated to the child's disabilities. Most of these show opposite relationships to caregiving and parental employment - negative for one, positive for the other or vice versa. However, better parental education substantially increases the odds of both caregiving and parental employment. Parental disability sharply reduces the odds of parental employment and somewhat increases the odds of reported family caregiving. Overall, the challenges are especially substantial for single mothers who cannot share the extra burden of raising a child with severe disabilities with a spouse.