Navigating Policy from below: Experiences of Social Security Disability Programs in Greater Chicago

Background and Purpose

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 lived 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 social work practice?

Methods

Data for this qualitative study comes primarily from 14 in-depth, semi-structured interviews. I spoke with twelve beneficiaries: four receiving SSI, six collecting SSDI, one collecting benefits from both programs, and one collecting benefits as a disabled adult survivor of a beneficiary. Six identified as white, three as Black, and one Latinx. Four were men and eight were women, ranging in age from 27 to 65. They had a range of disabilities that impacted mobility, mental health, speech, hearing, and vision. I also draw on two additional interviews with disabled people who looked into the programs but chose not to apply. Finally, I 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.

Results

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 Social Security Administration and other government entities, recounting inconsistent guidance from program representatives. 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.

Conclusions and Implications

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 that often fall short of meeting their basic needs. With this understanding, social workers can better serve disabled clients who may qualify for these programs. They also point to multiple areas for policy advocacy, ranging from clearer policy communication from the Social Security Administration, to enhanced protections against loss of benefits, to imagining broader, less conditional systems of income support.