OnTrackNY

First Episode Psychosis Program Spotlight OnTrack NY

By Imani Thompson
TA Assistant, The MayaTech Corporation


The Substance Abuse and Mental Health Administration (SAMHSA) defines psychosis as a condition that makes it difficult for an individual to differentiate what is real and what is not, leading to a disruption in their thoughts and perceptions. Individuals may perceive things that others do not or hold strong beliefs about things that are not true, such as delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear). They may also experience other symptoms of psychosis, which include incoherent speech, memory problems, trouble thinking clearly or concentrating, disturbed thoughts or perceptions, difficulty understanding what is real, poor executive functioning (the ability to use information to make decisions), and behavior that is inappropriate for the situation.1 According to the National Institute of Mental Health (NIMH), there are approximately 100,000 cases of psychosis each year with most cases beginning between the ages of 16 and 30.1,2 Psychosis may sometimes be a symptom of other disorders such as schizophrenia, schizoaffective disorder, schizophreniform disorder, brief psychotic disorder, delusional disorder, as well as major depression and bipolar disorder.1

The early onset of psychotic symptoms (up to five years after initial onset) is referred to as first episode psychosis (FEP). Experiencing FEP can be an immense time of stress and fear, especially due to the stigma associated with mental disorders. School-aged youth experiencing FEP may encounter trouble at school due to depression, sleep difficulties, and anxiety, as well as difficulty concentrating and completing assignments. There may also be a strain on relationships, as family and friends may not have the knowledge to support their loved one.1 Because psychosis is often misunderstood, treatments for psychosis, especially FEP, require coordinated care response. Over the last 15 years, coordinated specialty care (CSC) has emerged as a comprehensive evidence-based approach to treating young people experiencing FEP.3 The CSC approach includes using a medication prescriber, a primary clinician providing recovery-oriented behavioral and family services, and an employment/education specialist. Some programs also include a peer supporter that provides recovery-oriented services and lived FEP experience. CSC clinicians are trained to work with young people and their families to create personal treatment plans for FEP.

SAMHSA has dedicated funding to support individuals experiencing psychosis and FEP.

  • States are required to set aside ten percent of their Community Mental Health Services Block Grant funds to support “evidence-based programs that address the needs of individuals with early serious mental illness, including psychotic disorders.” This totaled $307 million in FY 2021 for over 340 supported sites across the nation. SAMHSA is collaborating with the National Institute of Mental Health and states to implement this provision. The 50 states, DC, Puerto Rico, and the territories receive funds to implement first-episode treatment programs.
  • The Community Programs for Outreach and Intervention with Youth and Young Adults at Clinical High Risk for Psychosis grant program provides funding to identify youth and young adults, not more than 25 years old, at clinical high risk for psychosis and provide evidence-based interventions to prevent the onset of psychosis or lessen the severity of a psychotic disorder.4
  • The Healthy Transitions: Improving Life Trajectories for Youth and Young Adults with Serious Mental Disorders Program grant provides funding to assist in creating many treatment programs that include individual/group psychotherapy, family support programs, medication management, employment education support, and case management programs that create and improve access to treatment and support for youth and young adults in the early psychosis age range and those who have a serious emotional disturbance (SED) or a serious mental illness/disorder (SMI).5

These programs and other resources have enabled many states to implement treatment programs and facilities across the nation to assist in the treatment, education, and awareness and demonstrate SAMHSA’s commitment to improving the lives of individuals experiencing psychosis and FEP.

Program Spotlight: OnTrack NY
We are excited to spotlight the work of OnTrackNY, an innovative treatment program for adolescents and young adults who have had unusual thoughts and behaviors, or who have started hearing or seeing things that others don’t. OnTrackNY helps people achieve their goals for school, work, and relationships. There are 22 program sites located throughout the state of New York.

Excerpts from an interview with OnTrackNY staff members: Iruma Bello, Ph.D., co-director and clinical training director; Ilana Nossel, MD, co-director and medical director; and Liza Watkins, MSW, director of operations.

Can you tell us about the work that’s being done through OnTrackNY to support individuals who have experienced FEP?

OnTrackNY is a mental health treatment program that empowers young people to make meaning of their experiences and to pursue their goals for school, work, and relationships. We support the well-being of young people across New York State who are impacted by unexpected changes in their thinking and perceptions. Equity, inclusion, rapid access, and self-determination are at the core of everything we do.

OnTrackNY was designed with the hope that it would change the trajectory of schizophrenia and other psychotic disorders, which traditionally had been associated with a chronic, relapsing course and disability. OnTrackNY was designed to provide services early after the onset of psychosis to help people get back on track with what is most important to them. OnTrackNY services were also designed to be engaging to young people and their families who traditionally have had high dropout rates from usual care.

How is OnTrackNY making a difference in the lives of individuals who have experienced FEP in New York?

OnTrackNY exists because research has shown that rapid access to specialized, early intervention makes a difference in young people’s lives and their ability to recover. OnTrackNY participants are achieving goals around high school, vocational training, and higher education, as well as finding and maintaining competitive work. OnTrackNY participants have greatly reduced rates of hospitalization and emergency service use, so they are out in the community where they can build and maintain social networks of friends and family. OnTrackNY also creates space for participants and families to connect with each other and advocate for change within the service system.

Can you share one of OnTrackNY's biggest program accomplishments regarding FEP?

OnTrackNY is a model of coordinated specialty care for early psychosis. CSC has been found to be more effective than usual care, with greater symptom improvement, greater involvement in work and school, and greater gains in quality of life. We have found that among OnTrackNY participants, engagement in school and work increases from about 40% at enrollment to about 70% after 6 months in the program. And hospitalizations decrease from 75% in the 3 months prior to enrollment to approximately 10% per quarter after enrollment.

We have a centralized training approach delivered by the OnTrackCentral team located within the Center for Practice Innovations, which serves as an intermediary organization supported by the New York State Office of Mental Health. The goal is to provide training, technical assistance and implementation support, data collection, and fidelity assessments for quality improvement to all of the OnTrackNY teams. The initiative has expanded from the four initial OnTrackNY sites in New York State to a network of 22 teams and counting. We also provide training and technical assistance to teams and state programs throughout the United States.

What resources are provided by OnTrackNY specifically for minority populations (e.g., Black, Indigenous, and People of Color and LGBTQ individuals)? Or how is the program adapted to meet their specific needs?

OnTrackNY recognizes that many individuals have been treated unfairly by society and mental health and other systems because of their skin color, sexuality, gender, abilities, or beliefs. OnTrackNY teams make a commitment to explore with individuals and their families how this impacts them. We are committed to serving individuals who have historically lacked access to or have been excluded from quality health care through assertive, trauma-informed, flexible forms of support and outreach that include translation services. We aim to achieve equitable outcomes, ensuring that all participants have what they need to thrive, no matter where they live, learn, work or play.

The required OnTrackNY curriculum includes a webinar series focused on racial equity and mental health services in addition to live consultation where more in-depth conversations occur. In addition, OnTrackNY has translated its promotional materials into Spanish and Mandarin and has developed many other participant and family-facing materials, including clinical tools around decision-making related to treatment options like medication and family involvement in treatment planning.

What have been some of your programs best practices or lessons learned? Successes or things that might have been challenges? Foreseen or unforeseen?

A core principle of the OnTrackNY model is shared decision-making in which the preferences of program participants and their families guide decisions about treatment. Each member of our team offers unique expertise from which participants can choose to support their recovery: peer support, therapy, support for work and school, family involvement, and wellness management through medication and other strategies. Team members balance consistency with flexibility, seeking to be reliable and responsive to our participants’ changing needs. Families often play a key role in the recovery process. Participants are supported in choosing whether and how to involve their families.

What advice would you give to current MFP fellows and alumni considering working with FEP programs?

There is a need for a workforce that is eager to engage in this kind of work and that connects with people of color. Furthermore, program participants want more providers who look like them and speak their language. We’ve also learned that a match between the culture of the provider and the participant can really make a difference, and BIPOC providers may be equipped to understand the contexts under which many of these BIPOC young people started experiencing psychosis and the structural and cultural barriers they face. In short, this is an area where there is great need with the potential for growth. Happily, there is good support for this work now with many opportunities available. Finally, we’d like to note that working with young people with early psychosis and their families is profoundly hopeful work. Our teams report great satisfaction in seeing the difference early intervention can make in the lives of young people and families, and the ways in which their community work is helping to reduce stigma and open opportunities for future generations.

For more information on FEP, FEP treatment, and the OnTrackNY program, use the following resources:

References

  1. First Episode Psychosis and Co-occurring Substance Use Disorders Evidence-Based Resource Guide Series. Substance Abuse and Mental Health Administration (SAMHSA). (2020). Accessed February 16, 2022. https://store.samhsa.gov/sites/default/files/d7/priv/pep19-pl-guide-3_0.pdf
  2. National Institute of Mental Health. (2015). Fact sheet: first episode psychosis. https://www.nimh.nih.gov/health/topics/schizophrenia/raise/fact-sheet-first-episode-psychosis
  3. Heinssen, RK, Goldstein, AB, Azrin, ST. (2014). Evidence-based treatments for first episode psychosis: components of coordinated specialty care. https://www.nimh.nih.gov/health/topics/schizophrenia/raise/evidence-based-treatments-for-first-episode-psychosis-components-of-coordinated-specialty-care
  4. Community Programs for Outreach and Intervention with Youth and Young Adults at Clinical High Risk for Psychosis. Modified Announcement. Substance Abuse and Mental Health Administration (SAMHSA). (2018). Accessed February 25, 2022. https://www.samhsa.gov/grants/grant-announcements/sm-18-012
  5. Healthy Transitions: Improving Life Trajectories for Youth and Young Adults with Serious Mental Disorders Program. Modified Announcement. Substance Abuse and Mental Health Administration (SAMHSA). (2018). Accessed February 25, 2022. https://www.samhsa.gov/grants/grant-announcements/sm-19-001