NAMI First Episode Psychosis Project

Program Description

NAMI is a leader in advocacy and policy, representing families and individuals with lived experience with early and first episode psychosis (FEP). The 3 main components are: Federal advocacy to secure funding for FEP program expansion State advocacy to secure funding and support for FEP program expansion and long-term sustainability Resource development and dissemination to reduce the duration of untreated psychosis and to connect youth and families with FEP programs FEP programs deliver coordinated specialty care (CSC) that includes psychotherapy, supported employment/education, case management, family support and medication management. FEP programs keep young lives on track and provide tremendous hope to youth and families. NIMH funded the multi-site RAISE study which found that delivering CSC to youth and young adults ages 16 to 25 experiencing psychosis had improved quality of life. Every young person first experiencing psychosis must have access to CSC to allow them to reach their full potential in life. FEP programs are positively changing the trajectory of young lives. Yet most states lack an adequate number of programs and the long-term sustainability of these programs is at great risk without advocacy for state and local funding and insurance coverage for all components of CSC.

Creativity

NAMI is uniquely positioned to advocate for expanding FEP programs, to create effective advocacy tools and educational resources needed for broader FEP program expansion and long-term sustainability. FEP programs are transformative for young people first experiencing psychosis associated with schizophrenia. These programs incorporate evidence-based interventions like supported employment, education and Cognitive Behavioral Therapy in a broader array of services so that young adults have the care needed to reach recovery and their life goals. FEP programs recognize the role that families play in supporting recovery. These programs include family support so that family members understand how to effectively support a young adult first experiencing psychosis on the road to recovery. This is a sea change because in most often caregivers are excluded from the treatment team.

Leadership

NAMI is a leader in federal and state advocacy in representing lived experience with early and first episode psychosis. NAMI brings a keen understanding of the early psychosis research based on our close alignment with NIMH and leading national researchers. NAMI is prepared to provide targeted TA to key states with minimal FEP program expansion and large populations that will benefit from these programs. These states include TX, NJ, PA, WI, MT, SC and IN. NAMI achieved success in seeking federal funding/ support for FEP programs. NAMI held a joint Congressional briefing with NIMH the day that the RAISE study findings were first published, and during that briefing, NAMI requested a doubling of the Mental Health Block Grant set-aside funding that provides states with funding for FEP program development. Congress agreed to that doubling which is creating momentum for FEP program development.

Sustainability

NAMI is building state advocacy capacity for FEP expansion and long-term sustainability and developing resources in the following ways: Developing an advocacy guide on FEP and providing TA Providing TA to target states on approaches to educating policymakers on the importance of expanding/sustaining FEP programs Refining tools used in target states to expand advocacy work beyond the target states and to continue to learn about advocacy approaches across diverse states Developing tips sheets on FEP for diverse stakeholder groups and a Helpline algorithm to respond to inquiries on early psychosis which will be shared with NAMI organizations nationwide. Partners organizations in this work include: Local/State NAMI Organization Leaders in 7 target states Existing FEP programs in 7 target states NIMH RAISE researchers and their affiliated programs including OnTrack NY and Navigate Organizations like America’s Health Insurance Plans (AHIP) and the Association for Behavioral Health and Wellness (ABHW)

Replicability

This project includes a Replicable Advocacy Model that will include the opportunities and challenges we discover by working in diverse target states and that will be shared with NAMI state organizations and all other interested organizations working on FEP program expansion and long-term sustainability. The model will include successes to replicate, challenges to overcome and lessons learned to inform FEP program expansion and sustainability in states across the country.

Results/Outcomes

NAMI’s work on early and first episode psychosis will help to reduce the duration of untreated psychosis (DUP) and increase the number of FEP programs around the country. Outcomes for this project are being measured as follows: State Advocacy and Field Readiness Continued federal funding for the Mental Health Block Grant set-aside and pilot projects in place for commercial insurance plans to cover the full array of services for FEP programs The Helpline Algorithm connecting youth and families to FEP programs will be operational and the resources developed on early psychosis and FEP programs for multiple stakeholders will see a 20% increase dissemination so that youth, young adults and families seeking information on early and first episode psychosis are well informed and seeking FEP services and supports.