No one gave Marc Rabinowitz and his wife, Elizabeth, a guide book when a close family member was diagnosed with schizophrenia in 2011. They had to navigate the morass of the mental health care system virtually by themselves, balancing the emotions of caring for an ill loved one with the maze of bureaucratic paperwork and lack of coordinated care from treatment providers.
It was a frustrating, but empowering experience for Marc Rabinowitz, a Ridgefield resident and retired partner at the global accounting firm Ernst & Young. He blogged about his discouragement with the health care system, and the stigma attached to mental illness. In his quest to find a system with better clinical supports and outcomes, he reached out to the Yale Department of Psychiatry, and was put in touch with Vinod Srihari, MD, Director of the Program for Specialized Treatment Early in Psychosis (STEP) , and Associate Professor of Psychiatry at Yale.
STEP was one of the first programs of its kind in the United States. It offers comprehensive, early intervention services for patients between the ages of 16 and 35 who have recently experienced the onset of a psychotic illness.
The care is free to people living in a 10-town region in Greater New Haven. This is the target area for STEP’s prototype of a population-based approach to early intervention. An early detection campaign engages individuals with psychosis and their families into care. Patients create a customized treatment plan with STEP clinicians that can involve psychotherapy, medication, employment or education opportunities, health and fitness support, and education and support for family members.
The aim is to get patients into the program immediately after the onset of symptoms so they can receive treatment and return to their everyday lives. Outcomes are rigorously measured and used to drive further refinements in the organization and delivery of care.
Rabinowitz said the model has been effective, and has the potential to revolutionize the way people with mental illness are treated. With a donation of $120,000, he and his wife established The Rabinowitz Fund to provide financial support to STEP.
"Marc approached STEP several years ago and challenged us to scale up our services. There is immense unmet need in our communities, and we have been inspired by his passion and persistence in thinking through obstacles in the way of expanding access to our services," Srihari said. "The STEP Program is honored to count him as a fellow traveler in this journey, and he has certainly made the trip more likely to reach its destination: a system of care we would all want for our children."
"I do believe he (Srihari) has a better perspective, and I think his perspective is something that I share just based on looking at this objectively over a pretty long period of time," Rabinowitz said. "You’re not going to be able to change people’s minds and eliminate the stigma unless you normalize the illness. The best way to do that is to get better results."
Srihari said the Rabinowitz Fund has provided critical support for "backbone" projects that could not otherwise be supported by research grants or clinical funds.
The clinic is developing a web-based outcomes measurement platform that it plans to offer to collaborating clinics across the U.S. and internationally. STEP wants to build a Learning Healthcare Network where sharing population level outcomes using common data elements will allow for sharing of approaches to improve these outcomes across separate implementations of early intervention services.
I think (Srihari) is on a right path trying to normalize it. I know he understands that, and I wanted to be part of it. The clinic is trying to achieve understanding and acceptance and avoidance of stigma.
It has also used the fund to refine its psychosocial treatment model and include cognitive enhancement therapy, a project it has begun with colleagues at Harvard and the University of Pittsburgh. The goal is to further improve STEP’s already effective model of care and in a manner that will be portable across an international Learning Healthcare Network.
Some of the money will be used to develop funding models that will allow participation by the private sector - philanthropy and social impact bonds - to help STEP scale up its services to meet the immense unmet need in Connecticut and to model a cost-effective approach for other states.
"While all of these projects are priorities for STEP for the coming year... The Rabinowitz Fund allows us to make more rapid progress on these goals than would be possible with current and already committed funds," Srihari said. "We are of course eager to work on several other high priority projects that are already well articulated. We deeply value the Rabinowitz family’s contribution - both for the confidence it expresses in our work, and the way in which they have helped us think about scaling up our impact with private donations."
Rabinowitz hopes his family’s donation serves as a catalyst for other individuals or institutions to contribute to STEP.
"As much as what I think Yale is doing is phenomenal, I have to get it out of an incubator and more into the mainstream," he said. "It’s got to get more widely disseminated. That’s one of our hopes, that working together and fundraising for it, we can start to make more of a difference in people’s lives."
STEP began treating patients in 2006, but it leapt into the Greater New Haven mainstream in 2015 with the launching of its MindMap campaign. MindMap aims to educate the community about the signs of psychosis, and to build a network of individuals and agencies who can transform pathways to care.
The campaign has used a variety of outreach methods, from social media channels to oversized advertisements on city buses, to disseminate its message.
"One of the challenges of working with mental health is that the symptoms are invisible, it is surrounded by stigma, and few people are comfortable talking about it," said Glen McDermott, founder of Red Rock Branding, a New Haven-based marketing agency which has coordinated the MindMap advertising effort. "Creating the MindMap brand has been a very rewarding collaborative effort between our team, our STEP clinical partners, and local community members."
Clinicians at STEP say the early intervention model works as long as people recognize the symptoms.
"Even the best treatment programs can only work for people who find or get referred to them," said Jessica Pollard, PhD, STEP’s Clinical Director. "Community awareness of psychosis, knowing what to do when a young person exhibits warning signs, and early intervention are crucial in quickly getting people to effective treatment programs like STEP."
Rabinowitz said the program also treats sufferers of mental illness with dignity.
"I think (Srihari) is on a right path trying to normalize it. I know he understands that, and I wanted to be part of it," he said. "The clinic is trying to achieve understanding and acceptance and avoidance of stigma."
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