Optimizing Disability Benefit Decisions and Outcomes in First Episode Psychosis

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A major NIMH goal for early psychosis treatment is to “prevent deterioration and disability among individuals suffering from psychotic illness”. However, rates of Social Security Administration disability (SSI/DI) enrollment remain high for young people in early psychosis treatment. Existing studies on SSI/DI have limited information on the FEP population. Enrollment in SSI/DI may provide benefits (including cash assistance, access to Medicaid/Medicare, and other social entitlements), but also detrimentally impact identity, vocational aspirations, career development and employment; individuals rarely leave SSAD benefits for full-time work. Racial disparities have also been identified, but remain poorly understood, with respect to the intersections between race, structural racism and the poorer outcomes long-documented among ethnoracialized minorities, particularly Black Americans. It is crucial to generate knowledge with the potential to inform decision-making about the benefits and trade-offs inherent in SSI/DI participation and help optimize outcomes within the context of SSI/DI participation among this population of young people (e.g. generally aged 16-30). The primary goal of this project is to investigate factors influencing decisions to apply for SSI/DI, the impact of these decisions, and the longitudinal relationships between SSI/DI and career development. This information will then be used to develop systematic strategies for improving services, supporting client decision making and optimizing outcomes. The NIMH-funded Early Psychosis Intervention Network (EPINET), spanning 105 coordinated specialty care (CSC) programs across 16 states, affords an exceptional opportunity to better understand these issues. Leveraging the EPINET initiative, this multi-phase, mixed methods study will provide important new knowledge regarding predictors of application and the relationship between SSI/DI and vocational functioning, will facilitate development and evaluation of a multi-level menu of actionable targets and associatedimplementation strategies, for example, specific ways of improving programmatic supports and policy changes designed to strengthen SSAD-related outcomes (translation of research to practice). The project is guided by the multi-level Disability Creation Process (DCP2) framework, and implementation activities by the Consolidated Framework for Implementation Research (CFIR). The proposed project will utilize quantitative data from the EPINET common dataset (n=5000), supplemented with primary quantitative (n = 330) and qualitative (n = 110) data collection in four distinct states. The study aims are to: determine the extent and predictors of SSI/DI application, SSAD enrollment and work/school functioning among clients enrolled in CSC programs, systematically investigate the client experience of SSI/DI decision making (through quantitative and qualitative data) and using implementation mapping to develop strategies to optimize CSC services as they impact SSI/DI. Racial differences and potential disparities will be examined across all three Aims.