WI23-04: "It's Hard to Know What to Expect": Parents of Children with Disabilities in Retirement

Income from the Social Security Administration (SSA)—through retirement, disability, and family benefits from the Old Age, Survivors, and Disability Insurance (OASDI) program and payments from the Supplemental Security Income (SSI) program—have the potential to provide substantial economic support for families with a retired householder caring for a child with a disability. Using a mixed-methods approach, this study aims to understand how households with retired adults and children with disabilities are faring economically, and how families perceive the adequacy of SSA benefits and supports for meeting family needs. We find that families with retired adults caring for children with disabilities are disproportionately likely to experience economic hardships, such as food insecurity, and that their overall economic well-being is often precarious. We further find that income from SSA is “vital” for many of these families, particularly for single-parent families; yet, for some families, SSA income does not fully alleviate hardship. Further, children's future financial and caregiving needs are a substantial concern for parents across an array of financial circumstances. We discuss policy mechanisms that could potentially support the economic well- being of these families and address structural disadvantages in the labor market that may lead to inequities in retirement savings. These include the following: accounting for a child’s disability in eligibility and benefit calculations for parents, for SSA benefits and other public programs; reconsidering asset limits for SSA recipients; and examining opportunities to reduce benefits cliffs. Findings also indicate potential opportunities to support family access to economic supports through enhanced information-sharing and case management as well as through connecting families to community supports.