WI23-04: Parents of Children with Disabilities in Retirement: Economic Well-Being and Benefit Adequacy



An increasing number of retirement-age adults have caregiving responsibilities for their children with disabilities. SSA benefits for both parents (retirement benefits) and their children (disability benefits) may be an important support for these families. Still, despite the potentially-crucial role of SSA benefits for these families, there is little evidence about how they are faring financially. Little is known about families’ economic circumstances, families’ perceptions of benefit adequacy, nor whether disparities exist by race and ethnicity or other dimensions of privilege.

This study focuses on understanding the economic well-being of families with retired parental caregivers for children with disabilities, using a mixed-methods approach. We first conduct descriptive analyses using the Survey of Income and Program Participation to gain broad understanding of the economic well-being of households with retirement-age parents and a child with a disability. We then conduct interviews with families to gain a more detailed understanding of families’ experiences with making ends meet and perceptions of benefits adequacy.

This study can provide evidence about the economic well-being of a population of families likely to rely on SSA benefits for income, as well as insight into families’ perceptions of benefit adequacy. The study will approach all data collection and analysis with a lens towards how economic well-being may be further compounded by structural racism or other measures of disadvantage, which can provide SSA with further insight into family well-being.


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