University of Pittsburgh School of Social Work Assistant Professor Nev Jones, along with Lisa Dixon (Columbia University & New York State Psychiatric Institute) and Howard Goldman (University of Maryland School of Medicine) have received a new $3.6 million grant award from the National Institute of Mental Health for their project "Optimizing Disability Benefit Decisions and Outcomes in First Episode Psychosis."
Individuals with non-affective psychosis continue to experience among the worst long-term outcomes of any disability group in the US including un- and under-employment, homelessness, poverty, and premature death. Specialized early intervention in psychosis services, widely referred to as Coordinated Specialty Care (CSC) in the United States, were designed to mitigate these negative outcomes. However, in spite of positive effects on many key domains, research from a foundational controlled trial of CSC found no effect of CSC on enrollment in disability-based benefits (SSI/SSDI) ostensibly reflecting no impact on long-term disability. Once enrolled in SSI/SSDI, individuals are rarely able to return to full-time work or school, and because of current SSI/SSDI policies, are often effectively trapped below the poverty line. Further work from the investigator team has also identified racial disparities in SSI/SSDI enrollment and associated work, school and financial outcomes, raising additional concerns.
The 5-year project will engage in extensive new data collection, involving both surveys and interviews, to better understand the factors influencing the decisions young people make, and contexts that influence these decisions, including family socioeconomics, structural racism, and the available, accessibility and quality of vocational supports. In the final phase of the grant, a participatory process will bring together key stakeholders from across the country to map out action steps at the levels of policy as well as practice with the goal of strengthening services and improving outcomes. The project will be advised by a national steering committee including impacted young people, their families and community providers.
In addition, this is the first time an NIMH R01 on schizophrenia has involved a PI with personal experience of schizophrenia (and early intervention); and the hiring of project staff and students with personal experience of psychosis will be prioritized throughout. Dr. Jones has made this a cornerstone of her work and has written about the importance of investing in a research workforce with personal experience of serious mental illness.
Dr. Jones reports "I'm deeply grateful to NIMH for funding this important project. A lot of schizophrenia research more narrowly focuses on symptom-related clinical outcomes and fails to grapple with the complexity of factors, including social and structural determinants, that can so profoundly shape service recipients' lives. With this grant, we have the opportunity to produce the kind of knowledge that could genuinely transform our understanding of underlying issues and generate solutions with realistic potential to shift policy and practice."
Dr. Jones is joined on the Multiple Primary Investigator Team by Howard Goldman (University of Maryland), one of the foremost SSI/SSDI and employment policy experts in the United States and Lisa Dixon (Columbia University), an international leader in the development and implementation of services focused on improving real-world outcomes among youth and adults with schizophrenia.