Leave No Stone Unturned

One therapist’s mission to grow specialized, community-based mental health care that everyone can access

This is part one of a series of conversations with Krista Baker, LCPC, creator and program supervisor for the Early Psychosis Intervention Clinic (EPIC) at Johns Hopkins Bayview Medical Center, where she has overseen the development of an extensive spectrum of outpatient services for individuals with schizophrenia. In part one, Krista shares how she became drawn to this work and how it has evolved. In part two (to come), she discusses how her team supports young people and their families through early stage psychosis.

Inspiration

I started at Johns Hopkins in outpatient psychiatry in 2000 and was experimenting with different ages and diagnoses. In 2004, I began working with a 17-year-old boy, whom we’ll call John. Believing he was possessed by demons, John had spent the better part of the previous six months going to various Catholic churches around Baltimore and asking priests for an exorcism.

Unfortunately, the priests were, unbeknownst to them, essentially colluding with this idea that he was demonized. Some would give him books to read, some would pray with him. No one said anything about an exorcism, but no one said anything about a possible mental health issue, either.

John ended up staying with me in outpatient treatment for the better part of six months. He and I developed a very good relationship. He tried a couple of different medications, but he wouldn’t really take them long enough to see much benefit. Then he decided, after about six months, that he didn’t want to come back to the hospital anymore. He believed by virtue of setting foot on the grounds of the hospital, he was agreeing that there was something wrong with him. He remained adamant that his problem was demon possession, and that it would be cured by religious intervention.

When he explained this to me, I told John that I’d love to be able to still stay involved, and asked if he would mind if I started visiting him at his house instead. He replied, “Sure, not a problem. I would still love to see you, but you have to know this is not a mental health issue. This is a religious problem.”

I started seeing him at his house. Several months later, sadly, he decided that I couldn’t come any longer as our continued relationship was indicative of a mental health issue. All in all, treatment lasted about one year with very little change. He’s never resurfaced and I don’t know what happened from there, but it was this experience with John that drove me to start researching schizophrenia and early treatment. I found there was virtually nothing in the United States in 2004 and 2005 outside of efforts that had just begun in Oregon and Maine.

I started thinking about how we could do something that would serve the youth community and intervene with effective support and treatment before schizophrenia fully manifests. I started meeting with hospital administration and community psychiatrists, presenting a blueprint for a program that would treat individuals with recent psychosis. After a number of years of planning meetings and hiring physicians, including the head of Johns Hopkins schizophrenia programs, Dr. Russell Margolis, we opened the doors to the Early Psychosis Intervention Clinic (EPIC) in 2008.

Evolving to meet the need

At the time, we were the only fee for service, non-research, clinical program in Maryland. Our goal was to attempt to figure out how to wrap together ancillary services such as case management and vocational services with psychiatry services in a fee for service model. We wanted to tailor the program to meet the needs of varying ages and ranges of acuity, which we began doing by piecing treatment plans together to fit the needs to each individual. To this day, we sit down at the beginning of treatment and uncover developmentally appropriate goals such as getting back to school or work, housing, reducing conflict within the family and increasing independence. We then identify barriers for reaching those goals, and offer services and support focused on breaking down those barriers. It is very much client-led versus clinician-led.

2008 and 2009 were focused on program development. At that point in time, I was still the only EPIC therapist. Then, in late 2009 we brought in another therapist as referrals for the outpatient program had picked up. Federal legislation ensuring insurance parity for behavioral health had been passed, but was still not being implemented, so people with private insurances weren’t able to get the services they needed at EPIC. This became a focus for me.

In 2010, our consultation practice, in which people travel here from all over the United States, doubled in size, to about 25 patients a year. People were calling me with requests for evaluations on diagnosis and treatment options because they couldn’t find effective care in their communities. In addition to lack of services around the US, many private insurances won’t pay for hospital-based resources, yet, there is generally nowhere else to access comprehensive treatment for psychosis. Small community mental health centers usually can’t offer comprehensive case management, mobile treatment, onsite peer counseling services, vocational services and the like. These services are available at large community mental health centers that are generally hospital-based. The only people that were getting into early psychosis care were on state Medicaid. Too many young people were still falling through the cracks.

In 2011, we began to see the first EPIC participants age out of the program. Some still needed support, but had nowhere to go with the same level of services and continuity of care. I knew we needed to be able to provide more services to a wider array of people — no matter the insurance policy, or whether they were fourteen, twenty-four, or forty. I decided we needed a continuum of care; it couldn’t just be EPIC.  

We started to expand services in 2011 with the Adult Schizophrenia Clinic, hiring two more therapists and more physicians to support it. It was a very successful addition. Today, we see approximately 100 patients per year in the Adult Clinic.

But that still left tackling the insurance coverage problem. I kept thinking, ‘What if this were me? Or my daughter? If this were my family, I would have to give up my private insurance and get on state Medicaid in order to access adequate healthcare. It isn’t right.’

Thanks to the federal mental health block grant funds specifically set aside for early psychosis treatment in Maryland in 2014, we were able to form a partnership with the University of Maryland to expand access to EPIC services to all Maryland residents through the Maryland Early Intervention Program. This essentially doubled the population we could treat – no matter the insurance circumstance. Through this partnership, we are able to fill in any gaps in insurance reimbursement for Maryland residents through the grant-funded program.

More recently, we’ve seen an uptick in patients being referred to us on clozapine, an antipsychotic medication that is considered an underutilized gold standard for patients that haven’t responded to other antipsychotics. Clozapine requires strict oversight through an FDA approved monitoring system due to a risk of dangerous side effects. Many providers don’t want to deal with the arduous processes necessary to effectively manage patients on clozapine, because there is a fairly complex titration period that can be very confusing for patients and requires a lot of clinician oversight.

True to my nature, I said ‘what are we going to do about this?’ And so, over the past year and a half, our team has been working diligently to develop the protocol for a clozapine clinic. Happily, we hired our first clozapine therapist in April 2016 and are currently spreading the word around Baltimore that the clinic exists. We are extremely excited about the opportunity to both provide patients with this service as well as act as a consultation service to providers in the state who want to prescribe clozapine.

In addition to outpatient services, we have a schizophrenia-specific day hospital and a schizophrenia-specific inpatient unit. We have services from childhood through geriatric that are specific to people with schizophrenia, with virtually every level of care.

My next endeavor is to create an intensive outpatient space specific to schizophrenia. Then, essentially, once I tackle that hurdle that leaves us with no stone left unturned in terms of age and acuity.

What’s next for early psychosis intervention in the U.S.?

As compared to other parts of the world, the U.S. is very late to adopting early psychosis treatment. Other countries have payer systems with true parity across all forms of healthcare. I would love to see insurance reform in the United States. I would love to see insurance companies change the way in which they decide to reimburse and what not to reimburse.

I would also like to see us develop effective ways to serve people in rural areas. We don’t have an effective strategy for that today. In Maryland, the eastern shore and the western side of the state are essentially uncovered with regard to schizophrenia specific treatment providers. I hear from them all the time. What do we do about that? I’m not exactly sure, because there’s not enough people to fund a team unless you have a roving team. If that’s the case, then, how well can you provide the intensive, comprehensive services needed if the team is roving?

Here at Johns Hopkins Bayview, we have a tele-mental health care pilot through the state Medicaid managed care organization. We’ve had a number of clients participate in this pilot program. We’ve found it to be incredibly difficult to engage remotely. This is a population that struggles with feelings of suspiciousness. It’s really hard to gain someone’s trust and establish rapport over the internet. These are all things I constantly think about that we just haven’t figured out how to solve.

I hope that the next ten years of evolution in early psychosis treatment moves at a much more rapid rate than the last ten years did, which will require even greater funding than what the federal government has currently earmarked to support the growth of these programs. I hope we’ll start to see greater awareness about treatment and recovery and we begin to see young people even earlier in the development of psychosis, rather than waiting for that first hospitalization. I’m hopeful that we have some momentum and awareness is growing thanks to groups like Partners for StrongMinds, but it’s going to take time. I know for myself and the Johns Hopkins schizophrenia team, we’re going to keep looking for the gaps and solving for them, one at a time, until we get there.

Krista Baker, LCPC, is the creator and clinical supervisor of the Early Psychosis Intervention Clinic (EPIC) at Johns Hopkins Bayview Medical Center, a nationally recognized outpatient program providing comprehensive wrap around services for adolescents and young adults experiencing an initial psychotic episode. The goal of the program is to reduce the disabling effects of psychosis and to assist individuals in reaching developmentally appropriate life goals. Working with psychiatrists of the Johns Hopkins Schizophrenia Program, Ms. Baker has developed an active consultation component of the program, providing second opinions, diagnostic clarification, and treatment recommendations for individuals all over the United States. To provide comprehensive care for individuals with established schizophrenia, Ms. Baker collaborated in creating, and continues to supervise, the Johns Hopkins Bayview Adult Schizophrenia Clinic.  Under Ms. Baker’s guidance, both clinics play key roles in multiple schizophrenia-related research projects throughout Johns Hopkins Medicine. With her experience in developing outpatient services for individuals with severe mental illness, and more than a decade of experience in providing emergency room psychiatric evaluations, Ms. Baker has become an advocate for improving Maryland mental health, testifying on behalf of persons living with mental illness in front of the state legislature and serving as a member of work groups developing state-wide mental health policy.