UC Berkeley

Over 13 million adults in the U.S. under the age of 65 receive SSI (Supplemental Security Income) and/or (Social Security Disability Insurance) benefits as their primary source of income, yet over 40% of these individuals live in poverty. In order to make ends meet, SSI/DI beneficiaries must navigate a complex web of social welfare policies, interlocking benefit programs and social stigma. This study seeks to deepen understanding of the impacts of living on SSI/DI benefits through the experiences of beneficiaries alongside the specific policies they must navigate.

Employing a qualitative methodology, this study explores how disabled people in California’s Bay Area make ends meet on SSI/DI benefits and investigates how these experiences impact beneficiaries’ sense of self and identity. Over two phases of research, 33 working-age adults (ages 18-65) are interviewed in an in-depth semi-structured format followed by four member-check groups. A constructivist grounded theory approach to data analysis is used to analyze findings using the qualitative data analysis software, Dedoose. Throughout, a Critical Disability Studies (CDS) theoretical foundation guides the study.

Findings from this study are organized into three main themes entitled; (1) the administrative burden of “playing the game;” (2) the Social Security model of disability and (3) a total institution without walls. In the first theme, participants’ individual experiences of SSI/DI are marked by precarity, struggles for basic needs and burdensome paperwork for and communication with the SSA. They use creative workarounds to navigate SSA policy that they often perceive as working against them in their efforts to make ends meet. Next, the Social Security model of disability refers to the iterative process experienced by participants in which SSA policy shapes society’s perception of disability identity as non-participation in the workforce, participants feel devalued by society at large due to their disability, and participants limit their own development of families and careers in order to abide by SSA policy and maintain their benefits. Thirdly, participants’ experience of SSI/DI benefits also exists on a communal level, wherein the trauma of one beneficiary penalized by the SSA with loss of benefits or an overpayment reverberates through a community of beneficiaries. Further, participants experience of communal restrictions, support and resistance all contribute to a sense of being encompassed by SSA policy as if in an institution without walls.Discussion of these findings are followed by three sets of implications for social welfare policy, practice and research. Policy recommendations address SSA policies that disincentivize SSI/DI beneficiaries’ labor market involvement; create rigid and encompassing conditions set on benefit maintenance; and other aspects of SSA policy such as eliminating differential treatment of SSI versus SSDI beneficiaries. Implications for social workers include attending to the psychosocial issues that arise in navigating benefit policy, providing support to reduce administrative burden, and developing infrastructure to support confidential peer-based networks of SSI/DI beneficiaries. Lastly, future disability policy research would benefit from employing the CDS framework that emphasizes the narratives of disabled people in research and seeks to assess policy efficacy through their experiences of it.