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. Using a purposive sampling strategy coupled with snowball sampling approach, 33 working-age adults (ages 18-65) receiving SSI and/or SSDI benefits are recruited to participate in the study. Participants are interviewed in an in-depth semi-structured format using an interview guide 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.
One of three major themes that emerged from this study is entitled, the administrative burden of “playing the game.” Many participants describe their experience struggling to survive while navigating SSI/DI benefits alongside other welfare programs as, “playing the game. Their experiences obtaining and maintaining benefits with restrictive conditions on earnings and assets align with the public policy concept of “administrative burden.” Examples of administrative burden for participants include documenting and reporting work activity, receiving and responding to overpayments, and regular interactions with the SSA to provide evidence of ongoing disability and assets totaling no more than $2,000. The constant surveillance of participants’ bank accounts and disability status lent to a chronic stress of losing the benefits that could barely sustain them, as well as experiences of stigma, anxiety, and frustration alongside material deprivation.
Conclusions and Implications:
While scholarship is robust on the experiences in many areas of the welfare state and for disability in general, there is little research that explores the intersection of these two stigmatized categories embodied by SSI/DI beneficiaries. This population is ripe for social work intervention as this study found implications for 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 work practice 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.