Experiences of Supplemental Security Income and Medicaid for Adults with Intellectual and Developmental Disabilities

• In Event: Barriers and Facilitators of Community Living for People with Intellectual and Developmental Disabilities

Abstract

Adults with intellectual and/or developmental disabilities (IDD) experience significant socioeconomic disparities relative to adults without IDD. Amid high rates of poverty and low rates of employment, adults with IDD often rely on public benefits, most notably Medicaid and Supplemental Security Income (SSI). Despite high reliance on such public benefits, little is known about how adults with IDD themselves perceive and navigate these systems despite them being the beneficiaries of these programs. 

This project explores the subjective experiences of adults with IDD, rather than family members or case managers, as they navigate these benefit programs. Research design and analysis is being done in partnership with community members with lived or professional experience with benefit management. Semi-structured interviews are being conducted with 30 adults with IDD. This sample is split into those who primarily self-manage their benefits and those who have a care partner who assists with benefit management. In the latter, both the adult with IDD and their care partner are interviewed. Interviews ask about the experience of applying for and maintaining benefits, as well as opinions about benefit adequacy and design. Interviews are transcribed and coded using reflexive thematic analysis, guided by the critical disability theory and administrative burden.

Preliminary results suggest that regardless of whether they have a care partner supporting with benefit management, adults with IDD identify multiple administrative burdens in navigating Medicaid and SSI. Both adults with IDD and their care partners incur significant learning costs, not knowing where to find information about maintaining eligibility or changes to eligibility. This uncertainty contributes to significant psychological costs related to the fear of inadvertently doing something wrong, potentially jeopardizing benefits or leading to other more serious consequences. Participants with IDD also discuss the injustice of benefits, noting the insufficiency of benefits and the ways in which that alongside onerous administrative requirements (compliance costs) leave them in a constant state of stress. Participants with IDD who primarily self-manage their benefits appreciate their level of independence, but this comes with higher levels of self-reported stress compared to those who have a care partner doing this. A care partner handling benefits facilitates benefit management, but adults with IDD wish they could have more independence, even while recognizing that they need significant support.

Medicaid and SSI provide integral supports for adults with IDD, and yet, adults with IDD struggle to navigate these benefit systems without support and struggle to make ends meet. Future research and policy should explore how to better support adults with IDD as they navigate these systems and consider how to streamline these benefits to be more accessible.

Author

• Jamie Koenig, University of Wisconsin-Madison
  Presenting Author