The Illinois Mental Health Task Force Virtual Summit Session 3—Learning From the Voices of Lived Experience: Informing Change

On October 13, 2020, the Illinois Mental Health Task Force Virtual Summit presented its third of five sessions. The program focused on a holistic approach to treatment and featured the lived experiences of two people in crisis, their involvement with criminal law and their efforts to get help.

Illinois Lt. Governor Juliana Stratton began the session by discussing aspects of the Justice, Equity and Opportunity Initiative, JEO. She said that justice reform is not just about policing, jails and prisons, but is also about healthcare, mental health and wellness. JEO has a key focus on addressing how people can have access to healthcare upon release from prison. Stratton said she was proud to work with organizations like the National Alliance on Mental Illness (NAMI), to help enroll juvenile detainees in Medicaid upon release. She encouraged everyone to get more information by listening to the JEO podcast series Walk, Listen, Learn: Our Journey to Justice. Stratton said she agreed with Rob Jeffreys, Acting Director of the Illinois Department of Corrections (IDOC), that underserved communities in Illinois have a medical treatment system rather than a healthcare system which is preventative. The lieutenant governor considers herself to be a restorative justice practitioner and says we need to listen to the people in order to do the work (to serve them). She said that the system of JEO is rooted in compassion and hope. More details can be found on the JEO website https://www2.illinois.gov/sites/ltg/issueslist/Justice-Equity-and-Opportunity-Initiative/Pages/Introduction.aspx.

Rob Jeffreys, Acting Director of IDOC, spoke next about statistics of people currently incarcerated in Illinois. He said that about 39 percent are diagnosed with a mental health illness and 79 percent of the women detainees are mentally ill. Approximately 1200 people remain in IDOC past their parole date yearly because they cannot get housing. Jeffreys said that many people in the prisons have backgrounds of severe trauma. IDOC has a reentry team to increase Medicaid enrollment and assist with work place opportunities. They partner with other agencies to find housing with support from the office of Lt. Governor Stratton. The Acting Director finished his remarks by emphasizing the need to look at the system holistically, focusing on housing, work and mental health services.

Moderator Alexa James, CEO of NAMI Chicago, introduced the program’s speaker, Dr. Debra Pinals. Dr. Pinals, Medical Director, Behavioral Health and Forensic Programs, Michigan Department of Health and Human Services; Director of the Program in Psychiatry, Law, and Ethics and Clinical Professor of Psychiatry, University of Michigan; presented on “Systems, Struggles and Strategies: Opportunities at the Justice and Behavioral Health Interface.” Dr. Pinals explained that “silo systems” are the different systems encountered in society such as court-ordered services, emergency room care, community substance use services, etc. These systems speak different languages and are unable to operate with each other. Criminal justice is focused on recidivism, a measure of success on whether a person returns to that system. Recovery is the language of mental health, not as a cure but defined by Substance Abuse and Mental Health Services Administration (SAMHSA), as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.” Laws and regulations can be challenging for treatment providers who address the “process” that is needed. Dr. Pinals highlighted the problems that arise when different systems, such as community civil systems versus criminal systems attempt to interconnect. She said that there is an over penetration of people with mental health illnesses in jails and prisons. According to Dr. Pinals, 60 percent of incarcerated populations have substance disorders, of that 22 percent also have mental health illnesses.

When treating people in custody, Dr. Pinals said it is important to look at the whole person- child welfare, time in foster care if they were removed from home, understanding that children should stay with parents. Treatment for substance use upon reentry is a matter of life and death for people with opioid addictions; the risk to relapse and die is great. There is no recidivism if a person dies but that is not what we want from a public health standpoint. In taking a holistic look at the individual, everything is important, race, the socioeconomic status of their community, environmental factors, the relationship between crime and mental health symptoms, etc. 
Dr. Pinals advocated shifting financial burdens to meet the needs of people in their communities. Currently more money is being spent on prisons. She recommended working with Medicaid as a partner agency for community-based support. Courts can help by using mandates and support to keep people engaged in treatment. Dr. Pinals encouraged cross-collaboration, to use what works in each system and think broader to form safety networks. She outlined a “Sequential Intercept Model” that would support someone with a continuum of care through a variety of systems from community services through involvement with law enforcement, court appearances, prison and reentry. This strategy is thoroughly explained in the book Sequential Intercept Model and Criminal Justice by Patricia Griffin et al. Dr. Pinals completed her presentation by urging participants to review evolving trends addressing reforms, follow SAMHSA guidelines and best practices published by the National Association of State Mental Health Program Directors, NASMHPD. She said that we need evidence-based practices and engagement.

Following Dr. Pinals, Alexa James introduced Olachi Etah, a young woman who shared her lived experience of having bipolar disorder and being in crisis. She had graduated from college and wanted to become a psychiatrist. She was attending Loyola but had to take a leave of absence when she started having symptoms. She took a new job in Chicago and did volunteer work, but she began roaming the streets in psychosis. Her mother flew in from Maryland but could not find her daughter. Etah ended up at O’Hare in the midst of a psychotic episode. While submerged in a mental break, she hallucinated gun shots and picked up a child to take her to safety. The child’s mother took the child back, police officers surrounded Etah and arrested her. She was charged with kidnapping, not taken to a hospital. Etah spent a year in jail. She said the goal (of the system) was always prison. She was found not guilty by reason of insanity (NGRI), after trial and remanded to a state hospital. There she received treatment and medications. She said it felt like a final destination, like a system not built for someone to leave.

Etah said she has been in full remission since 2016. But she says that the NGRI label makes her feel like an eternal defendant, a cast off as a dreg in society. She wants to be a productive member of society, but says that the system “works to sever your voice.” Etah made an appeal to police and judges viewing the session to take actions that lead to recovery. “Don’t let fear influence the most critical decisions.” She added, recovery is a full 360 with many components—medication, family, freedom to be other things besides a person with a mental health disorder, a “well-rounded comprehensive human.”

Frederick Nitsch, the final speaker of the day, talked about having bipolar type 2 disorder. He said that he had been hospitalized three times with overwhelming suicidal ideation. He does role playing for first responders in Crisis Intervention Team (CIT), training. Nitsch said that his symptoms of anxiety started in middle school with stomach problems and vomiting. He described depression and suicidal thoughts. After receiving inpatient care, he was discharged with medication but felt overwhelmed by the need to find treatment providers and deal with his depression. He returned to school and said it was difficult to find all the services he needed. He turned to drugs, alcohol and felt amazing. He experienced his first manic episode. He was arrested twice for shoplifting and not showing up to court. When he bonded out, he did not have access to the same medications he had been taking while in custody. He dropped out of grad school, had panic attacks, a bleeding ulcer, was suicidal. Nitsch said that the prospect of finding providers seemed insurmountable and believed he would always be ill. But then he said he hit his rock bottom and found Trilogy Behavioral Healthcare. They have a variety of services, a team of people to provide coordinated care. Nitsch asks, “How do we get someone care before they’re in crisis?” It should be a goal to make the path to wellness as easy as possible. He said that mental health recovery does not rely on connection, it IS connection. Recovery for him means active maintenance, medications, seeing a counselor, maintaining things that keep him healthy. He said he still goes to groups—a vital part of wellness that gets overlooked—to give him a connection with people who have shared experience.

There was so much valuable information presented in this session that is easily accessible on the internet, in print and even as a podcast. There is great need for treatment providers and all societal systems to work together to support and treat people with mental illnesses. Working together presents the best hope of providing a continuum of care to help an individual live a life as a “well rounded comprehensive human.”

Juanita Archuleta is an assistant public defender in Kane County, Illinois.