"They're making up their own rules": Nonprofit disability advocates confront a hostile policy environment

• In Event: Political Sociology Section Roundtables
  In Refereed Roundtable (60 minute): Street Level Politics (Table 10)

Abstract

The US Social Security Administration (SSA) administers two forms of cash assistance for disabled people, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). These programs are known for their bureaucratic complexity and strict eligibility standards, which lead to the initial denial of more than half of all applications. In response to this complexity, multiple networks of nonprofit advocacy organizations have developed in order to assist applicants to navigate program rules. While they only have capacity to serve a fraction of claimants, these institutions serve an essential institutional role in mitigating inequality by linking eligible claimants to benefits.

Over the course of 2025, SSA underwent a cascade of administrative and policy changes, including a drastic cut in staff, changes in communication systems, and a general shift in posture of the agency that many characterized as more hostile. In order to study the effects of these changes, we interviewed 52 advocates at 32 community organizations across the US who assist SSDI and SSI claimants. While our initial research questions focused on claimants’ access to benefits, another set of themes emerged around these organizations’ relationships with SSA and their capacity to serve clients.

While obtaining SSDI and SSI had previously been difficult, respondents still understood it as a rule-based process. But in 2025, SSA actions seemed increasingly arbitrary and inconsistent, as if staff were “making up rules.” Rapid shifts in policy left advocates unsure how best to govern organizational operations or to advise their clients. Processes that were once routine, now required earlier and more active intervention from lawyers and other experts. The cumulative impact of these obstacles strained the capacity of organizations that already had limited resources. Some advocates feared that they would be forced to serve fewer clients, even in a moment when their services were acutely needed.

Authors

• Matthew Borus, Binghamton University

• Katie Savin, California State University Sacramento

• Callie Freitag, University of Wisconsin-Madison