Navigating child SSI: A qualitative study of systemic, family, and provider-level influences

The Supplemental Security Income (SSI) program of the Social Security Administration (SSA) provides an important safety net to families of children with severe disabilities who meet specific income and asset criteria. Despite its importance, there is evidence that around 30 % of potentially eligible children are not enrolled.

This qualitative study examines individuals' experiences of barriers and facilitators to enrollment in child SSI.

We conducted 51 interviews with caregivers of children with severe disabilities, including 36 interviews with individuals who applied for child SSI, and 15 with individuals who have potentially eligible children but who have not applied.

We find that several deterrents to take up may be at play. The perception of high application burden, limited time, cognitive demands of competing household responsibilities, and psychological stress limited caregivers' ability to get through the application's administrative "sludge." Moreover, the stigmatizing or "labeling" effect of SSI enrollment on their children, as well as the perceived compliance costs of child SSI, deterred applications. Finally, our interviews reveal that service providers, most within pediatric healthcare settings, play a critical role in facilitating access to child SSI.

Our findings suggest that more systemic capacity building for service providers could level the playing field for potential applicants in the context of other sources of enrollment variability.