Affiliations: Social Security Administration, Washington, DC,
USA | GovLoop.com, Tampa, FL, USA
Note: [] Address for correspondence: Kalman Rupp, Social Security
Administration, 500 E Street, SW., 9th Floor ITC Bldg., Washington, DC 20254,
USA. Tel.: +1 202 358 6216; Fax: +1 202 358 6187; E-mail: kalman.rupp@ssa.gov
Abstract: Parental and family inputs are particularly important for children
with disabilities receiving benefits from the Supplemental 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.
Keywords: Children, caregiving, disabilities, health status, health care utilization, family, labor force participation, home production, parental employment, SSI, SSA
