Navigating Policy From Below: Managing on SSI and SSDI Before the Trump Administration

• In Event: The SSI Recipient Experience

Abstract

The Social Security Administration’s income support programs for disabled people serve millions of low-income beneficiaries each year.  But the literature on poverty and social welfare programs has paid limited attention to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), particularly to the experience of claimants.  Eligibility for both programs eligibility is conditioned on documentation of disability, which is defined in medical terms as making one unable to work beyond a minimal level. But economic need still pushes many beneficiaries to seek work, as do policies like Ticket to Work that seek to incentivize beneficiaries to participate in the labor market. This paper asks how beneficiaries manage the conflicting messages and incentives that are embedded in SSDI and SSI. How do they understand their relationships to the programs and to the labor market, particularly while complying with complex rules to maintain their eligibility for benefits?  And how can these insights inform policy?

Data for this qualitative study comes primarily from 23 in-depth, semi-structured interviews I conducted in the Chicago area in 2022 and 2023.  I spoke with 18 current beneficiaries of Social Security Administration (SSA) disability programs, 3 former beneficiaries, and 2 who had applied but had not, at that point, been approved. Their ages ranged from 18 to 65, and they identified as Black, white, Latinx, and Asian-American.  Informants had a range of disabilities that impacted mobility, mental health, speech, hearing, and vision.  I also draw on over a year’s observation of meetings, primarily on Zoom, of an organization of nursing home residents and their supporters, where questions around SSI and SSDI were common.

I find that beneficiaries engage in active, ongoing work to manage their benefits and meet their basic needs, in a process I call policy navigation from below.  With limited resources and information, clients devote considerable mental and emotional labor to maintaining their eligibility, earning what money they can through paid work, and dealing with the uncertainty and precarity that frame those tasks.  Many expressed frustration with the SSA, recounting hours spent on the phone seeking guidance long before recent staff cuts that worsened such problems.  Some declined to pursue opportunities that might have provided them with greater income or additional income support, for fear of losing the main benefits on which they relied.

These findings underscore that SSI and SSDI clients are not simply passive recipients of aid. Instead, they proactively manage mentally and emotionally taxing set of requirements in order to secure and maintain eligibility for benefits.  Those benefits often fall short of meeting anyone’s basic needs, but they were still crucial resources that clients were careful not to lose.  In a period of indiscriminate cuts across the social sector, this research points to the importance of defending these programs.  It also highlights multiple areas for enhancing the programs when policy windows shift, ranging from clearer policy communication from the SSA, to enhanced protections against loss of benefits, to imagining broader, less conditional systems of income support.

Author

• Matthew Borus, Binghamton University (SUNY-Binghamton)
  Presenting Author