On November 29, New York City Mayor Eric Adams unveiled a new plan to expand involuntary mental health treatment by widening the scope of what behaviors can qualify someone to be forcibly hospitalized and drugged. It used to require being a danger to self or others—but no longer, according to Adams.
The plan met with concern and condemnation from the very people it is supposed to serve—disability rights activists, advocacy groups for the unhoused, human rights activists. Perhaps this outcome could have been avoided had Mayor Adams gone through the proper channels before springing a new mental health policy on the people.
You see, I chair the Consumer Advisory Board (CAB committee) for the NYC Department of Mental Hygiene (DOMH). And I can tell you first hand: We were not consulted before this plan came to fruition.
The CAB committee is composed of people with psychiatric diagnoses with a vested interest in advocacy and who are thus stakeholders in the mental health community. Many CAB members are former patients, peer specialists, social workers, and advocates. We are community organizers. Connected to networks in the mental health community, most members of the CAB committee in NYC know many people affected by mental health policies in need of reform. Members of the CAB have a vast fast fund of knowledge of how mental health services in NYC are carried out and implemented.
The mission of the CAB couldn’t be more transparent and essential to the rollout of a significant new initiative impacting mental health in NYC.
The vision of the NYC DOHMH CAB bylaws reads:
The mission of the CAB is to review and make recommendations for existing and future DOHMH policies, programs, services, and issues that impact individuals with mental health needs. The CAB will strive to educate, promote, and protect the human rights and dignity of individuals with mental health needs while seeking further cultural competence within the community. The CAB will address specific programs and policies of the DOHMH, not those issues that solely concern an individual.
CAB members and I meet periodically with a liaison from NYC DOMH, as well as with other high-level managers and program directors, including managers from programs including Assisted Outpatient Treatment (AOT) and forced treatment programs. There are also administrators from nonclinical programs, such as rehabilitation services, and other administrators with a big hand in the administration and oversight of mental health policy in NYC. We all sit at the CAB committee to review new initiatives in NYC that will impact mental health services and people with mental health diagnoses.
I can tell you first hand that the CAB never collaborated with the Mayor or his team during the rollout of his new plan. The CAB committee never got the memo.
This is a big problem. The CAB should have been allowed to advise the Mayor. At the very least, the CAB should have been allowed to submit recommendations to DOHMH, which could have passed the information along to the Mayor before the rollout.
Activists have long held the mantra “Nothing about us without us.”
As a person with lived experience, I must worry about the few people in charge that govern and regulate the provision of care, keeping me alive and healthy in the community. I find it deeply disturbing that the Mayor bypassed the CAB committee before the rollout.
I still remember reading about Mayor Adam’s plan on my computer at home as the daily news blogs updated one evening. I just looked at the computer screen and said, Oh no, this will be a disaster. That was when I began emailing other advocates in the NYC city area to inform them of the Mayor’s plan and to gain additional information about what I was reading on the internet. Every advocate I spoke with had the same information—only what was being circulated in the major newspapers and from Mayor Adam’s soundbites on the subject. That was when I knew I needed to widen the scope of my probe into Mayor Adams’ plan.
By the end of the first week of the Mayor’s rollout, I received an email from DOHMH. The email was an invitation from the Commissioner of Mental Health for DOMHM for “important stakeholders.” The meeting was titled “A Plan for Serious Mental Illness in NYC.” That was when I realized how big a mess this rollout was shaping up: a meeting about the plan a week after the plan came out?
The Commissioner could have collected data, counsel, and input from these so-called important stakeholders before embarking on a significant shift in how mental health services get implemented in one of the largest cities in the United States, but instead we were to have a meeting a week afterward.
As it turns out, I sat in the virtual waiting room of the hybrid Zoom meeting for an hour before giving in to the chaos now in full swing at the DOMMH in NYC and logging off. Later, I inquired about the technology issue. A manager at DOHMH told me that many advocates were left in the Zoom lobby and never got to participate in the Commissioner’s meeting. While this may seem like a simple technology issue, it signals a much larger problem around access, participation, and consideration for the people involved in the system and its reform. I had made special arrangements and cleared my work schedule to attend, albeit virtually. With less than twenty-four hours’ notice of the meeting and a lot of rearranging, my busy calendar was sitting in a virtual lobby when CAB discussed real matters without the guidance of my lived experience and clinical experience.
The following week, the CAB committee sat for a special presentation on NYC’s “Plan for Serious Mental Illness.” This CAB meeting, and the depressing ride home, where I reflected on the meeting’s significance, or lack thereof, from Queens to my house in Yonkers, will be etched in my memory for a long time.
After over a decade of professional experience with the NYC care system and two decades of lived experience, I am tired. I’m unhappy with high-level workers who don’t amount to more than an empty suit, a big paycheck, and a zero understanding of mental health in NYC.
The presentation was brief and basic. I don’t think the Commissioner or DOHMH knows how to help people with serious mental illness. I heard nothing new or different from the general policy direction NYC was taking, the same as the policy direction the New York State Office of Mental Health was prescribing in their next five-year plan. After the technology snafu with the Commissioner’s meeting the previous week, I was hoping we would have the opportunity to listen and advise on some fresh ideas resulting from that meeting. That was not the case, since there were no fresh ideas. Nonetheless, after the presentation, CAB members offered their input on today’s presentation.
I remember feeling my emotional state become agitated as I offered my talking points. I could see the emotional states of other members do the same, as they generally do during a CAB meeting. After all, these meetings can be very triggering for people with lived experience. In many cases, we talk about our lived experiences and accessing memories that intersected with severe trauma, in many cases. Tolerating these meetings takes a considerable amount of self-control and regulation. Without years of insight-building and self-awareness into my illness, I would not be able to chair or attend these meetings. It’s only due to all the healing I’ve done in my recovery journey that I can do that. I like to think of the intense emotional labor I perform at these meetings as part of the more considerable advocacy work I do to reform the NYC care system.
My points were simple but constructive. First, I wanted to frame the discussion into terms on which everyone could agree. In terms of the emerging mental health rollout, a plan to address “serious mental illness” in NYC must address people’s crises. People in crisis, in many cases, experience trouble communicating and executing their safety plans. In my own experience, I have extreme difficulty speaking and making sense when symptomatic. In many cases, they can’t speak with or contact emergency workers or their health providers before the further escalation of symptoms.
I presented to the CAB a medical card I give people to read when I am in crisis, so they better understand my confusing and sometimes alarming behaviour. Medical information cards like this experienced airtime in the movie Joker, and when I saw the card used in the film, I ordered one online to arm myself during a mental health emergency. While the card wasn’t used so productively in the movie Joker, I felt that with practice and savvy application I could use this as a tool in my recovery. It has worked for me. I have yet spoken to experience further incidents when using the card when I have trouble with key players to protect my safety during emergencies.
I also elaborated on the importance of accessible transportation for people in crisis. Often, a ride home or to a friend or relative, the store to buy food, or even to get some fresh air can divert people from heading to the ER or a hospital. The ability to get from one place to another safely is one of the most significant administrative hang-ups and needs to be part of future solutions to help people with an acute or evolving mental health crisis. After listening to ACT workers and CAHOOTS teams refer to themselves as cab drivers, taking their patients to and from clinics and medical appointments in rural or inaccessible areas, I can say that access to transportation is historically ignored or under-addressed. The lack of adequate and accessible transit continues to be a big player interfering with the success of too many people.
I also touched on the revolving door of the Supported Housing program. While the number of beds in the program must increase, people’s success in the Supported Housing program also hinges on workers connecting with their residents. I have seen first hand too many people cycle in and out of the Supported Housing system because higher levels of care do not prepare residents to live independently before stepping down from a group home or being discharged from a state hospital.
Other CAB members had their advice. The meeting was no different this way in terms of the level and rigor invested by CAB members. The liaisons and assistant commissioner listened and thanked the CAB for their feedback. Does this mean things will change? In my experience, maybe, but only slowly. I have seen the fruits of the CAB committee circle back when presenters follow up with us on the success of their projects, but change on the scale needed to push back on the Mayor’s plan and chart the system in a better direction will take real time.
On my way home from the meeting, I reflected and wondered when my work and labor could end, and when real reform would manifest for the people served by the DOHMH and CAB.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.