We live in an increasingly chaotic world. As political debate and federal governmental action ignites more controversy, many of us in the U.S. and elsewhere find it difficult to manage our mental health. Congress’ vote on May 4 in favor of the American Health Care Act (AHCA) adds fuel to the fire (in potentially detrimental ways for mental healthcare). In addition to the suffering such a sociopolitical environment engenders, the financial burdens of brain illness on our society are rising, including costs for serious mental illness. Schizophrenia, for example, affects about 1.1% of the world’s population, and also affects the caregivers who assist those afflicted. The estimated U.S. economic burden from schizophrenia nearly tripled from 2002 – 2013. While recovering from schizophrenia’s symptoms and stigmas, folks not only need medical care but also face challenges supporting themselves and resuming productive roles in society, multiplying the total 2013 U.S. cost to an estimated $155.7 billion. Federal and state programs for early treatment have emerged to address this issue, which have shown encouraging results, but political challenges remain. The more of us who speak up in support, the stronger the outlook for those of us in need.
In the summer of 1990, just after my freshman year at Dartmouth College, I experienced a psychotic break and was diagnosed with schizophrenia. This event began a journey of adversity, recovery, and discovery—thanks to a comprehensive early intervention, the support of a loving family, and my acceptance of my condition as a card I have been dealt, I am thrilled to say I have emerged from that valley of delusions, anxiety, and depression into a productive, meaningful life. I am married, working as Communications Director of One Mind Institute, and serving on the Lived Experience Workgroup and Steering Committee of the Prodrome and Early Psychosis Program Network (PEPPNET), a national network that nurtures collaboration among schizophrenia early treatment programs. My story is one among many, that illustrate a trend today among youth newly diagnosed with psychotic disorders like schizophrenia—with a rapidly spreading form of early treatment called “Coordinated Specialty Care”, recovery is actually probable. Many emerge stronger than before their condition onset—others with lived experience who serve PEPPNET include Michael Haines, Young Adult Leadership Councilor for Oregon’s EASA early treatment network, and Donita Diamata, who works with one of two nationwide federally-funded, peer-run psychiatric technical assistance centers. To make this kind of recovery common throughout our society, however, will require advocacy from the grassroots.
A Synergistic Approach to Assist Recovery
Modeled after the multi-pronged treatment approach applied in a recent, large-scale, NIMH-funded study called RAISE, Coordinated Specialty Care (CSC) integrates five key elements that together boost the lives of youth newly diagnosed with psychotic disorders. Each of these elements—community education; outreach and engagement; assessment; psychiatric and medical care and specialized counseling; family education and support; and supported employment and education—is an evidence-based practice that is simple to deliver in a community outpatient clinic. The RAISE study (and subsequent outcomes data) has shown that when these coordinated practices are delivered to young patients within a year of their first psychotic symptoms, most will require lower doses of medication, and will experience more growth in their quality of life than patients treated with non-CSC programs. Moreover, CSC programs evoke much greater improvements in school and work attendance than does treatment as usual. Thanks to this evidence, over 200 CSC programs have sprung up around the nation in the last few years, fueled by funding from the Substance Abuse and Mental Health Services Administration and Medicaid. Many CSC programs also incorporate peer counseling, or cognitive training, with encouraging results. CSC shows so much public health potential—but big challenges remain.
Challenges for Coordinated Specialty Care
The primary challenge comes in program completeness and sustainability. While every component of CSC is important, the part that New York CSC pioneer Lisa Dixon has called the model’s “secret sauce”, supported education and employment, is not funded by Medicaid, nor by private insurance plans. This component is important in that it directly assists patients back on their feet as productive citizens, to regain structure and direction in their lives, which I believe are essential to ongoing health. I and others on PEPPNET’s Lived Experience Workgroup, such as Donita Diamata, can attest that being able to pursue a meaningful career has helped us to stay healthy. According to Dr. Elyn Saks, only about 15% of individuals with schizophrenia attain jobs, leaving 2.975 million in the U.S. without employment. To ensure that everyone starting to experience serious mental illness can get back to school and work will require that CSC programs everywhere can sustain this supportive component.
We Can Do This!
Fortunately, there is an advocacy avenue individual citizens can pursue to help our states fund supported education and employment services. According to NAMI, the federal Center for Medicare and Medicaid Services (CMS) is encouraging states to apply for waivers to use Medicaid creatively. You can contact your state’s mental health authority (mental health division or administration) and ask them if they have applied to the federal Center for Medicare and Medicaid Services for 1115 Waivers, or used 1915(i) state plan amendments, to get approval to use Medicaid funding specifically for these services. If they haven’t, you can kindly encourage them to pursue these options—and please tell them I sent you! Contact me through One Mind Institute’s website if you have questions.
If it passes the U.S. Senate, Congress’ AHCA bill will significantly reduce states’ Medicaid allocations, which could make CSC programs dependent on Medicaid funds even more difficult to sustain. If you care about giving folks with serious mental illness their best chance at recovery, I encourage you to let your Senators know that you support keeping federal Medicaid funding at its current level (or greater) so that CSC programs can continue to thrive.