2022 California Council of Community Behavioral Health Agencies (CBHA) Conference

Understanding Co-Occurring Disorders: A Mother’s Journey To Turn The Tide On An Epidemic

Co-occurring disorders (COD) is the combination of one or more mental health challenges/disorders and substance misuse/addiction. My son Harris had COD and died by accidental overdose when he was 19. I am so grateful that Behavioral Health News is devoting attention to this topic because Harris was far from alone: 22% of American teenagers ages 13-18 have a mental health disorder with severe impact; 50% of all mental health disorders arise by the age of 14 – 75% by the age of 24; approximately 70% of all those misusing/addicted to substances have a co-occurring mental health challenge/disorder; and, approximately 10.2 million Americans meet the criteria for a diagnosis of COD. Teens and young adults, in particular, are in the crosshairs as they often try to find ways to cope and manage underlying, emerging, and existing mental health disorders through “self-medication”. My family and I founded the Harris Project, a 501C(3) nonprofit organization after Harris’s death.

Our Story

Harris was diagnosed with an anxiety disorder at 3 years old, and later with ADHD. To look at him you would never know the internal challenges he faced. He was handsome, popular, social, quick-witted, athletic, warm-hearted, and empathetic. Feeling like he was the only one facing these struggles, Harris developed a set of coping mechanisms that at times seemed incongruous with his diagnosis. This made it even harder for family, friends, and teachers to understand what he was going through. Harris received professional help for his mental health disorders throughout his life, but there was never a discussion about the potential dangers of “experimentation” or “self-medication”. When Harris began smoking marijuana in 8th grade, no professional even raised a red flag. But, two weeks before he died Harris told me that he wished he never started smoking marijuana because of what it did to his already anxious mind. For him, he felt like he couldn’t stop, yet marijuana use often left him feeling unsettled. According to Harris, it was the gateway to his later misuse of prescription medications including opioids.

It was when Harris entered his first rehabilitation program – during his senior year of high school – that we initially heard the term “co-occurring disorders”. In each of the subsequent three in-patient and two out-patient rehabilitation programs, as well as under the care of several “addiction professionals”, this diagnosis was reiterated. Yet despite assurances that they effectively treated individuals with COD, each environment failed to address the mental health piece that brought Harris to use in the first place, and would be the cause of each relapse.

When Harris died everyone in our small town wanted to know where to make donations and what they could do to help. Somehow in the chaos I had clarity. Harris had COD: if Harris understood the dangerous link between his mental health disorders and self-medication that could have been the first and best opportunity for him to make different decisions. The second thing I realized was that if the rehabilitation programs he entered had truly been “co-occurring capable” they would have provided an integrated treatment plan that met all of his needs. For the most part each of the in-patient rehabilitation programs: took away the substances (even those prescribed for his mental health disorders); put Harris into group therapy (based in large part on when you walked through the door); and provided little to no individual therapy/evidence based treatment opportunities to address his anxiety disorder and ADHD. How could anyone think this would work? Harris died on a Wednesday and his funeral was on the following Sunday. In those few days, I sat at my kitchen table and did the work necessary to lay the foundation for the Harris Project. As I eulogized Harris on that horrible Sunday, I also launched the Harris Project.

For our family, Harris’s death and the untimely deaths of so many young people was a call to action. the Harris Project concentrates its efforts on prevention and advocacy for integrated treatment. Our prevention programming focuses on early intervention for emerging mental health disorders, as well as paths to substance misuse/addiction; while our advocacy work emphasizes the critical need for integrated and comprehensive treatment for those with COD. To achieve these goals, the Harris Project works in collaboration with governmental agencies, providers, community based organizations, schools and universities, and the private sector across the NY tri-state area.

Through the Harris Project, I get the incredible honor of presenting about COD to many populations, including: high school and college students, as well as administration and staff; parents and community members; healthcare professionals; those at local, state and federal agencies; and, more recently, with members of the private/corporate sector. I also work with colleges and universities to create learning opportunities for students choosing careers in the helping professions.

The growing opioid and heroin crisis has brought increased attention to this subject, and the Harris Project is rising to the challenge.

Co-Occurring Disorders Awareness: CODA

Not content with doing “one and done” presentations, the Harris Project designed a prevention program to empower youth to understand COD, remove the stigma associated with COD, and become positive decision-makers. CODA is a school-based program delivered through: presentations, workshops, activities, social media, and events to engage students throughout the school year. CODA encourages teens to explore why and how they turn to substances (for example: self-medication of mental health challenges/disorders, trauma, sports injury, wisdom tooth removal, etc.), as well as to understand the potential impact of what some consider “experimentation” on the developing brain which makes all of our youth vulnerable. CODA is designed to:

  • increase awareness and understanding of co-occurring disorders for youth
  • increase early intervention for mental health challenges and substance misuse
  • reduce the incidence of youth mental health crises, drug misuse, addiction, and overdose
  • increase the likelihood that those already impacted by co-occurring disorders will seek help
  • create a generation without the stigma typically associated with mental health challenges/substance misuse
  • create youth leaders who can impact their peers and communities.

With the support of Westchester County, the Westchester County Department of Community Mental Health, Putnam/Northern Westchester BOCES, Southern Westchester BOCES, Student Assistance Services, Inc., and many other community-based organizations, CODA launched in Spring 2017 with CODA Week, and last year alone reached over 13,000 students at 16 Westchester and Greenwich, CT high schools (including students in alternative settings) with incredibly positive feedback.

Under the banner of Westchester County’s Project WORTHY (Westchester Opioid Response Teams Helping You) initiative, on October 16, 2017 the Harris Project partnered with the Westchester Department of Community Mental Health for a Youth Leadership Summit (YLS). Student teams and staff from 38 high schools across Westchester met for a day of education, empowerment, shared decision-making, and planning. With 400 youth in attendance, the YLS opened conversations about how the opioid crisis affects them, and what practical steps they can take to fight back. Among the issues tackled were the underlying causes of opioid and heroin addiction. Each team created an action plan and returned ready to engage their entire school community in the themes of CODA. As a result of this historic event and together with our partners, the Harris Project is on track to more than double its reach and will help facilitate CODA activities and programming across Westchester County.

There is nothing like watching the faces of students when it clicks, and hearing things like: I had no idea so many teens had mental health disorders. I thought I was alone in this. You mean there’s a relationship between mental health and misusing substances? Hey, I never thought of it like that – WOW. There are things I can do and people who can support me to not go down that path? Why isn’t everyone talking about co-occurring disorders? How can I help spread the word?

Transformational Systems Change Through Integrated Treatment

On the integration of services side, the Harris Project began work in this area in December 2015 with an initial plan of hosting a professional roundtable on best practices for the treatment of COD. There was commitment from then Deputy Commissioner from the Westchester County Department of Community Mental Health, Michael Orth, so I began putting together the list of invitees. I had the good fortune that a series of introductions led me to Dr. Ken Minkoff of ZiaPartners, Inc. Dr. Minkoff is a board-certified psychiatrist with a certificate of additional qualifications in addiction psychiatry. He is recognized as one of the nation’s leading experts in recovery-oriented integrated services for individuals and families with co-occurring mental health, substance use, and health conditions. Also included are other complex needs like: trauma, housing, legal, disability, parenting, etc. Dr. Minkoff developed a welcoming, recovery-oriented, hopeful, strength-based, trauma-informed, and complexity capable integrated system of care implemented through a national consensus best practice model: the Comprehensive Continuous Integrated System of Care (CCISC). He was clearly my guy!

On April 8, 2016 (what would have been Harris’s 22nd birthday), the Harris Project convened the Co-Occurring Mental Health and Substance Use Disorders Integration Roundtable with participation from the mental health commissioners and deputy commissioners representing Westchester, Putnam (who had already begun work with Dr. Minkoff) and Orange Counties, together with federal/state agencies (including the Substance Abuse Mental Health Services Administration and the Office of Alcohol and Substance Abuse Services), providers, hospitals, higher education, family members and peers. Dr. Minkoff participated long distance. At the conclusion, Dr. Minkoff helped the group prioritize next steps. There were several follow-up meetings, and planning sessions. The initial plan was to have Dr. Minkoff lead a training with representatives from the 3 counties, but little did I know the reach was going to expand.

In October 2016, I was invited to attend an information session about the newly formed New York State Regional Planning Consortium (RPC). The RPC is designed to promote collaboration, problem solving and system improvements for the integration of mental health, addiction treatment services and physical healthcare in a way that is data informed, person and family centered, cost efficient and results in improved overall health for adults and children in our communities. There are 11 regions across NYS, and our local Mid-Hudson region includes Westchester, Putnam, Orange, Rockland, Ulster, Sullivan, and Dutchess Counties.

While the focus of the RPC is transformation within the Medicaid system, it was my belief that since its mandate supported developing a best practice, person-centered model, it had the potential to create a complexity capable, integrated behavioral healthcare system that could be applied in any setting, meeting the needs of anyone. I ran for a position within the Peer, Family, Youth stakeholder group, and in January 2017 was elected to the Board of the Mid-Hudson RPC.

I listened, learned, and shared. Harris’s story featured prominently in my passionate appeals for a system of care that could be easily navigated and integrated services that could be delivered under one roof. In March 2017 the Mid-Hudson RPC was connected to Dr. Minkoff, and a regional workshop was given the green light. I was included on the planning team, and was gratified to see this come together with broad-based support.

On November 13 & 14, 2017 the Westchester Medical Center Health Performing Provider Systems (PPS) in conjunction with the Mid-Hudson RPC sponsored a 2-day forum on “Creating a Welcoming and Integrated, Trauma-Informed System for Addressing Those with Co-occurring Disorders” led by Dr. Minkoff and his partner Dr. Chris Kline. I had the surreal pleasure of introducing Dr. Minkoff to begin the event. All 7 counties of the Mid-Hudson RPC sent teams made up of county mental health directors, providers, hospitals, agencies, community organizations, family members and peers. Also in attendance were representatives from the NYS Office of Mental Health and the Office of Alcohol and Substance Use Services. Attendees worked in teams by county to contribute to the ongoing regional and county efforts to implement a more competent co-occurring system of care. Among the almost 200 participants were 10 members of our original 2016 Roundtable Integration Team! Dr. Minkoff encouraged participants to look at the populations they serve and why complexity should be viewed as the expectation – not the exception when addressing their needs. At the conclusion, there was commitment by all to continue this transformational work.

The number of lives being lost to overdose is tragic. the Harris Project hopes to turn the tide by bringing “co-occurring disorders: out of the shadows and into the light.”

For more information about the Harris Project, Stephanie may be reached by phone (914)980-6112 or by email stephanie@theharrisproject.org.

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