Applying for supplemental security income (SSI) for individuals with intellectual and developmental disabilities: family and service coordinator experiences.
SSI is broken in ways families and staff agree on, so small workflow fixes can speed the process today.
01Research in Context
What this study did
The team mailed a survey to families and service coordinators. Both groups help people with intellectual or developmental disabilities apply for SSI. Two hundred forty-four people answered. They listed what helps and what blocks the SSI process.
What they found
Families and coordinators told the same story. Paperwork is hard. Rules are confusing. Both sides want the same fixes. The study did not give numbers, but it showed clear agreement on where the system fails.
How this fits with other research
Friedman (2018) shows that most states allow participant-direction in Medicaid waivers, yet expect almost no one to use it. Dubuque (2015) shows families hit the same wall with SSI—allowed, but still blocked.
Singh et al. (2008) argued that lifetime care costs far outrun typical family income. Dubuque (2015) adds that even the main cash benefit meant to close that gap is itself hard to get.
Kunze et al. (2025) found adults with IDD have tiny support networks. Dubuque (2015) helps explain why: families burn out just fighting for SSI, leaving little energy to build wider circles.
Why it matters
You can copy the survey list of barriers and check which ones your families face. Use it at your next planning meeting. Pick one barrier—like lost documents—and build a simple fix, such as a shared Google folder. Small wins keep families moving forward.
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02At a glance
03Original abstract
In the United States, the Social Security Administration (SSA) provides financial benefits through Supplemental Security Income (SSI) to many individuals with intellectual and developmental disabilities (IDD). Family members and service coordinators (SCs) provide a critical role in applying for SSI on behalf of individuals with IDD. The present study uses a street-level lens to understand the implementation of SSI policy from the perspective of family respondents and SCs based upon their experiences with the application process. Using surveys developed from focus groups and interviews with family members and SCs, the study explores parts of the application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. Survey respondents included 122 family members and 122 SCs in the western region of New York State. Findings reflect experiences at the various steps of the application process including initial applications, interviews and assessments, as well as experiences with SSA workers. Despite several significant differences, a general congruence between family respondents and SCs suggests considerable opportunities for improvement. This study provides a preliminary evaluation of a complex process from two different perspectives, with implications for policy, practice and future research.
Intellectual and developmental disabilities, 2015 · doi:10.1352/1934-9556-53.1.42