Consumer Advisory Board Chair: NYC Mayor Adams Did Not Consult With Us on New Mental Health Policy

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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 firsthand: We were not consulted before this plan came to fruition.

A photo of Mayor Eric Adams at a podium, with many other people behind him wearing suits.
NYC Mayor Eric Adams announces new mental health policies at a press conference

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 impacted 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 to further cultural competency 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 managers from nonclinical programs, like 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 firsthand 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 huge 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 biggest 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 highly triggering for people with lived experience. In many cases, we are talking about our lived experiences and accessing memories that intersect 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 connect to 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 behavior. 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 to experience further incidents when using the card when I have trouble speaking 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 purchase 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 helping people in 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 firsthand 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.

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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.

5 COMMENTS

  1. This isn’t about treating mental illness. It’s about suppressing insight being given as to how people become homeless. It’s about making people feel comfortable that don’t want to know. It’s about superficiality. It’s no different than acting like promoting “mental health programs” in was zones is going to help, but not promoting negotiations, or exposing the power grabbing going on. Same as Kendra’s law wasn’t about making it less dangerous for the general populace, in that it makes it more dangerous. It covers up the collusion the standard mainstream drugging method has with the spike in mental illnesses. To tend to situations, one has to deal with cause and effect, not deny cause by selecting a fragment of the whole effect of the cause, and then supposedly tending to that, and even would in that little select fragment there be signs of improvement, it’s still an excuse to deny the whole major overlying and underlying cause.

    It’s simply not true that people are homeless because they are mentally ill, this denies the whole economic-social abuse that caused their problems.
    It’s simply not true that tending to mental health in a war zone actually stops the abuse people encounter, it only makes it out to be a “mental illness” when one has a natural response to an extremely traumatic experience. The same goes for poverty, minority status, and the rest of disenfranchisement: one would have to actually take trouble to stop war, poverty, discrimination and neglect itself.
    It’s simply not true that laws like Kendra’s law stop violence, they cover up the collusion psychiatric drugs have with causing violence, they also promote MORE violence towards people with a diagnosis.

      • As “externalities” go I was referring and am referring to internalities which are cause. From cause and effect. There is only an extreme rise in mental illness, in disability, in violence from people forced on medications, and this was not going on before people were force drugged, were deprived of their civil liberties, we’re lied to that the medications treat chemical imbalance when in reality they cause it by disabling the brain rather than making it healthy. To behave as if what is clearly in collusion with causing the problem, that this is the solution and isolate one small subset of a group while ignoring that the whole group in itself is much worse, this is only adding to the numbers and acting like the small subset advertised as being treated effectively can dismiss the whole rise and the group in its entirety. Furthermore, this also advocates for suppressing methods which not only would help the subgroup better, methods which statistically have proven to do this, but suppresses methods which help more effectively the whole group in its entirety. Advocating for what statistically scientifically and methodically has shown to be more effective that is dealing with cause and effect which is what’s going on at an internal level with the people, and that is what I was addressing. Also I am not interested in forcing anybody to do anything forcing any situation and going against nature rather than with it. Going against nature and using force is what causes the whole problem to begin with rather than listening to people.

      • I don’t really know what you are referring to regarding “externalities,” because it’s not clear, It sounds as if you are making a sarcastic remark, as if I brought up points which aren’t relevant. That isn’t what I did, and I’m sorry if I misunderstood, but it’s not at all clear from your curt post what you mean. It’s real typical to invest in a solution (put them all in the asylum, the drugs will fix them up), and then regard everything that points out to it not being a good idea as “externalities” or “spurious” or “superficial” or “unrelated” or “irrelevant” or “irrational” or “crazy” or “psychotic” or “emotional.” In reality what becomes “external” is the whole premise that something is valid when it is made out to be founded in logic because it uses mental constructs, and thus conceptually seems that it should work for “something,” while whether it actually works or not is dismissed, because of the constructs. But because it sounds like it’s a process or a method, whether it works or not people are relieved, and this is like turning off a warning signal and acting like the problem is fixed. The warning signal was not an “externality.” This becomes worse when the “solution” actually does damage, even though one thinks these are needed “side effects.” One would be better off handing out magic charms for a placebo effect. People are so addicted to believing medications work when there are side effects, or the no pain no gain philosophy, that they think the addiction is “just side effects,” or “necessary pain for gain,” or even sign of the disease that needs this “solution.” Iatrogenic damage is not from the disease.

        If you are referring to what goes on outside of the supposed solution, which is caused by the supposed solution (and so really isn’t “outside” of it at all, but made out to be outside, irrelevant etc), while the “solution” is pared down to those marginal few that it helps but would be helped better by other methods suppressed by the “solution” then yes, those are problems with “externalities.”

      • I wonder if I see now? You are saying that if one would sue the states that are doing these things (calling people who are homeless crazy, as if there’s no reason they are homeless, or then not acknowledging those who are damaged by forced AOT etc.) that then the other states would have to get together to not do that? Or at least the issue would become known…

        That’s awfully noble…