Most people who experience psychosis or develop a schizophrenia-spectrum diagnosis start going through related problems in their teens or early twenties. This is a particularly challenging period in life to be dealing with daunting symptoms that can include hearing voices, tormenting hallucinations, preoccupation with conspiracies, convincing but unshared beliefs, paranoia, isolation, problems with attention and memory, loss of motivation, and suicidality. Parents in this situation are often shocked to find their young adult children are discharged from emergency hospitalizations with little more than a piece of paper with a medication written on it and (maybe) a series of 15 minute appointments with a psychiatrist. Surely this is not enough to address such a challenging diagnosis at such a sensitive age? The truth is that this is not enough. Decades of research now show that specialized treatment teams can make a dramatic difference and set young adults on a path of recovery. The problem is, until recently, there have been no sustainable payment models for a better approach to care, which has blocked the availability of real psychosocial rehabilitation and recovery services.
In the 2000s, several leaders in psychosis research spearheaded an unprecedented nationwide study to test psychosocial rehabilitation and recovery-oriented treatment adapted for young people experiencing early psychosis. Their research built on and with pioneering work in Europe, Australia, and Canada. In my estimation, this large-scale research project was provoked by several increasingly convincing facts:
- Psychosis usually hits during a critical period for adult development (late adolescence / early adulthood);
- Many people achieve full recovery after psychosis given the right circumstances and supports during that early phase; and
- The community health centers that traditionally serve people with these diagnoses were not appropriate or adequate for young people experiencing psychosis for the first time.
The research resulted in evidence-based programs called Coordinated Specialty Care for Early Psychosis (CSC). CSC involves recovery-oriented, team-based, “wraparound” services that address the major life goals and barriers for young people with psychosis.
New action from the Centers for Medicare and Medicaid Services
Ken Farbstein is a parent who has seen this team approach work first hand. His advocacy efforts along with others have recently culminated in a new billing code that could finally make it possible for programs to be paid for their team based services.
Here is how Ken explains this new approach and opportunities for new payment models for CSC programs:
Many families struggle to get the right providers to help a family member who has psychosis. That was certainly the experience of my family when our son developed hallucinations and delusions, and then a psychotic break. Several months later, the leader of a family support group of NAMI, the National Alliance on Mental Illness, suggested I look into a program to promote prompt recovery from early psychosis, based at a small building in a nearby community. My son attended that day-long program for two days a week. At that Coordinated Specialty Care program for Early Psychosis (CSC-EP), he saw a psychotherapist, a peer with lived experience, and a job coach weekly, and participated in groups providing psycho-education about ways to cope with his psychosis, prevent a relapse that could lead to another hospitalization, make friends, get work, cook healthy meals, etc. He saw a psychiatrist weekly, and developed a good rapport with her, until her grant ended. He learned a great deal during the two or three years of the program, and is now well into his recovery, with a good job and his own apartment; his life is back on track. But soon after he completed the CSC-EP program, the program’s funding ended, and it had to close! Shockingly, that’s true across the nation: it’s very difficult for programs like that to find sustainable funding. That’s true even though strong evidence in the medical literature shows that a CSC-EP team is needed for the best treatment.
But now, CMS, the organization that manages Medicaid and Medicare for the entire country—the Centers for Medicare and Medicaid Services—has just made it much easier for providers to team up to offer that much-needed coordinated care. That’s vital because provider teams have had to run on a shoestring, patching together grants, charitable donations, and (rarely) state contracts. That has greatly limited the availability of these teams. But now, CMS has approved two team-based HCPCS (Medicaid) billing codes for this coordinated care, meaning that provider teams will be able to come together and bill insurers so the team-based services can routinely help families in need. For more information, contact me, a member of the PEPPNET (Pre-risk and Early Psychosis Program Network) Financing Workgroup, and NAMI volunteer, at KenFarbstein@earthlink.net, and feel free to share this with your medical team.
If you or your loved one may be eligible for CSC in your area, it is likely the best opportunity to pursue; You can start with the Early Serious Mental Illness Treatment Locator to research options in your area. It is worth noting that these options may depend on financing - out of pocket vs. commercial insurance vs. Medicaid. CSC providers often have valuable insights to help strategize, but the onus often falls on families. Both government representatives and commercial insurers have pushed for CSC due to its humanitarian and cost saving potential, but our disjointed healthcare system remains a barrier for many families. We hope that this article will help bring awareness to the specific issue of CSC and the general issues with our healthcare system that are worse for people with SMI. If there is not an accessible CSC program serving your area, there should be, and we hope that the information in this article can help with local and national advocacy.
CSC is proactive and focused on prevention - aiming to prevent the trauma and chronic barriers to life and wellness that our healthcare system has addressed poorly for past generations. Providers, policy makers, and advocates each need to know about CSC and the importance of the new HCPCS funding mechanism to make it real “on the ground” - funding more and better CSC programs. By learning about and supporting CSC and the ongoing work to hone this model and disseminate related evidence-based programs, you take us one step closer to reducing the unnecessary struggle and suffering that brings many of us here today.
We at Akin are proud to be able to share Ken’s message, and I am proud to call him a colleague and friend because he and his colleagues are strong allies in advocacy toward recovering the U.S. mental healthcare for people with serious mental illness. If you have read this far, you are likely also part of the change for better, and we are grateful for your contributions. Thank you for your time, and stay in touch.