Morning Zen Guest blog post ~ Damien Sands & Tamara Sale ~
We know that Schizophrenia is one of the leading lifetime causes of disability(1), yet when young people develop psychosis in the United States, the average delay before receiving treatment is more than two years(2). Families face a series of obstacles when finding and accessing care, and the care available is rarely based on current research(3). Young people experience barriers to treatment, traumatizing and coercive entry into care at times, and services not based on current knowledge - if they were receiving care at all(4).
Here in Oregon a small group of advocates, their families, and State and Local Government became strange bedfellows and formed what became the first statewide attempt to implement evidence-supported early psychosis intervention as a community standard of care for all adolescents and young adults. Oregon’s Early Assessment and Support Alliance (EASA) began as a regional initiative and spread through a series of intentional strategies to the state level. EASA was born out of a Managed Mental Health Care Organization called Mid-Valley Behavioral Care Network (MVBCN), then under Oregon’s Medicaid program, whose goals explicitly identified prevention and early intervention as part of its mandate. MVBCN’s staff looked at the practices developed by the Early Psychosis Prevention and Intervention Center (EPPIC) at the University of Melbourne, Australia. For a decade the University of Melbourne had digested, researched and developed training and support materials associated with the treatment of early psychosis(5).
With staff whose experiences were shaped both personally and professionally by this condition, along with key leadership who saw the suffering experienced in their adult population, they championed a revolution in how traditional care was offered in the community. EASA’s goals are to enable young people to maintain normal developmental progress and control of their lives in their own communities, rather than the common experience of crises leading to isolation, poverty and disability. It was this local grassroots effort where we observed significant decreases in hospitalization, which caught the attention of State leadership. However, it was those youth describing horrific neglect and various tragedies and their transformation to success through EASA before State legislators that made the largest impact. No longer was EASA trying to make this happen on its own, but now through legislative funding it had the opportunity to expand.
At this point this is where I received the opportunity to work at the State with my co-writer Tamara Sale, then at MVBCN and now the Director of the EASA Center for Excellence at Portland State’s Regional Research Institute. This partnership became a critical relationship. Expanding EASA and rolling out a Young Adult System was not to be the traditional RFP where the State would be passive in its involvement, simply relying on widget counting, but instead would be actively involved in systems transformation. EASA was reshaping how care was offered and it was critical that barriers created by our own Administrative Rules and limited billable codes be removed to allow this transformation to occur. Equally, the State provided administrative authority, contract accountability and problem solving, in partnership with technical experts from MVBCN who supported and guided ongoing implementation at both state and local levels in an official capacity. Simply put, not only did EASA shift the ways local providers operated, but it changed the role of State program officers, from passive contract monitors to active advocates for system development, and those who started as advocates were brought into a day-to-day role of helping to operationalize the evolving system.
With this partnership, the new EASA programs established a programmatic infrastructure in less than a year. The six years that it had taken MVBCN had now been distilled, and its success could be attributed to increased clarity of the model, detailed practice guidelines, training, consultation, fidelity review, financial support and contractual accountability. A retroactive analysis of the dissemination process identified the following elements as critical for others in early stages of adoption.
- Articulate a vision for system reform that extends beyond current constraints and communicates urgency;
- Establish centralized facilitation and ongoing leadership committed to system change;
- Engage leaders and other partners to bridge funding gaps and identify and pursue high leverage opportunities;
- Using available resources, establish ongoing training, consultation, coaching, and workflow redesign;
- Establish an ongoing process of receiving and reviewing feedback about implementation and outcomes; and
- Engage with others involved in similar efforts nationally to share resources and leverage change across common systems barriers.
By 2013, 80% percent of the population in Oregon was covered under EASA. The Young Adult System had been built to a point where it was working in partnership with EASA, while lending support to advocacy organizations such as Youth Move Oregon. The next step was the Oregon Health Authority and Office of Vocational Rehabilitation Services funding the new EASA Center for Excellence at Portland State University Regional Research Institute(6). The Center for Excellence is now responsible for planning, training, fidelity reviews, credentialing, statewide program development and coalition development, ongoing sustainability efforts, integration of emerging research, and ongoing evaluation. From a small local MHO, EASA has now grown into an established center and is poised to oversee the implementation of remaining areas not served around the state, and to be a leader in technical support across the nation for those that seek it out.
There are several key lessons from Oregon’s experience for policy makers and partners at the local, state and national levels. Perhaps the most important is that universally accessible early intervention at a large scale is feasible within the United States, but requires leadership and a systemic approach. There is a danger in narrowing the approach to a Medicaid population, as this will most likely miss the majority of young people in their community who need the service. The national RAISE study hopes to demonstrate that a set of well-researched interventions provided early in the illness can reduce disability and improve outcomes(7). Broad implementation requires community education and outreach. All the while, EASA remains true to its origins with a focus on youth voice, young adult engagement, family involvement and empowering the person to have success in their own care. By sharing our successes in these areas, all early psychosis programs in the U.S. can benefit from solutions others have found.
- Wu, E, Birnbaum, H, Shi, L, et al. (2005). The economic burden of schizophrenia in the United States in 2002. Journal of Clinical Psychiatry, 66, 1122-1129.
- Marshall M, Lewis S, Lockwood A. Association between duration of untreated psychosis and outcome in cohorts of first-episode patients. Archives of General Psychiatry 2005; 62: 975-983.
- Drake R, Essock S. The science-to-service gap in real-world schizophrenia treatment; the 95% problem. Schizophrenia Bulletin 2009; 35(4): 677-678. US Department of Health and Human Services.
- Mental Health: A Report of the Surgeon General. Rockville, MD: US Dept of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999.
- McGorry PD, Hickie IB, et al. Clinical staging of psychiatric disorders: a heuristic framework for choosing earlier, safer and more effective interventions. Australia and New Zealand Journal of Psychiatry 2006; 40(8): 616-622.
- Portland State University Regional Research Institute. EASA Center for Excellence. Available online at http://www.rri.pdx.edu/Project/761. Accessed 2/15/14.
- Recovery After an Initial Schizophrenia Episode (RAISE): NIMH Research Project. Available online: http://www.nimh.nih.gov/health/topics/schizophrenia/raise/index.shtml/ Accessed February 5, 2014.
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Damien Sands, MPA is a Director with a regional county governmental agency and founding partner in Re-emergence Consulting, focused on innovative delivery strategies for Governmental and NGOs serving youth and young adults. Damien has over 20 years experience in serving and advocating for Young Adults in Transition, and has been involved in numerous startups from regional MHOs to groundbreaking innovative practices at the State and local level.
Tamara Sale, MA, is the Director of the EASA Center for Excellence at Portland State University in Oregon. She has been responsible for development and implementation of Oregon's early psychosis effort since it began as a regional program in 2001. Tamara has decades of experience as a mental health systems planner and as a family advocate. For more information go to www.easacommunity.org