The Mental Health Advocacy Spectruum
I have many colleagues in the mental health system. These colleagues are professionals, friends, prosumers, allies, and every shade of grey in between. With this said, I associate with people in every ‘camp’—Antipsychaitry, clinicians, prosumers, and people that straddle multiple silos within the mental health community. My stance is that each ‘camp’ has a little bit to offer everyone interested in learning about mental health, healing, and spreading awareness to folks that misunderstand it altogether.
In my opinion, we all can benefit from more education/psychoeducation. Regarding stigma, misinformation, and total lack of mental health awareness, I believe the impetus becomes more significant and needs more urgent to define some terms that remain loosely articulated indeed. This loose articulation, this slippery and poorly defined language surrounding mental health and mental illness, is where the mental health community’s issues become to creep into the picture.
As I said, I have many colleagues in the mental health system. Some of them I’ve never met face to face. These are advocates in other states, some of them, other countries. Most of the advocates I communicate with are like-minded. These are folks who understand mental health to be a deep, layered, and complex discourse.
Most of the advocates I communicate with share my beliefs and stance on the more hot bottom topics:
- AOT (Assisted Out Patient Treatment aka Forced Treatment)
- medication over objection
- the need to expand areas of inpatient psychiatric settings while limiting state-level ‘extended’ care units which seem to defer re-integration into the community
I believe in community mental health, above all. While community mental health is a broad and generic term, it generally is defined by both deinstitutionalization and providing access to treatment and support to people with a mental health diagnosis in their neighborhoods. With this said, we need to continue to (de)institutionalize our large treatment centers–the psychiatric state-level hospital/warehouses–and slowly fund additional beds at the local level. Without further delay, closing down ‘extended care’ units in state-level hospitals supplant them with community hospital beds and services.
I also welcome Open Dialogue approaches to treatment. I am a peer specialist and understand the importance of having peers in treatment teams and clinical conversations. I do not believe that peers or people in antipsychiatry camps are dangerous like some folks do. We all have something important to offer the exchange. I think voice hearers are also embarking on their inner-voyage to better health. If well managed and under the right supervision by their treatment teams, peers, and networks like the Hearing Voices communities, which provide support to folks who wish to live their lives on less medication and welcome a broader ecosystem of voices into their life. To say hearing voices isn’t ‘normal’ to folks who typically hear voices if left to their biological makeup without medication takes a big piece of the humanity for these folks who are just that: human.
I am an overweight Jewish man from New York State with an active schizophrenia diagnosis in terms of my humanity. I have been committed to involuntary treatment numerous times for different stays at local and state psychiatric hospitals. Simultaneously, I believe that forced treatment for Violent and SPMI (Violent and Severe and Persistently Mentally Ill) people is both necessary and justifiable in particular individual situations. I do not think this treatment is the gold standard for this population (whether violent or just SPMI). Instead, we need always to revise our practices, moving studies, and research forward to move into an era where forced treatment is obsolete.
As for Kendra and the day when the very ground floor of modern mental health treatment in New York trembled and collapsed on itself, we patients will never forget it. Kendra’s death marked a new beginning for many violent and severe and peristently mentally ill patients facing possible incarceration, legal issues, and jail sentencing. That moment I am speaking was when Andrew Goldstein pushed Kendra in front of a train in 1999. Well, Andrew’s violent act is now history. But, we patients must never ignore the implications of his violence, which changed the face of mental health treatment forever in New York and stated adopting forced treatment laws.
Kendra’s death will not be in vain. The fate of so many violently mentally ill people is now changed. Now, there is hope and available treatment for this population. There is treatment instead of incarceration and re-entry into the criminal justice system. Her death signaled to the world that we need to radically shift our methods and approach to treating people who are violently and persistently mentally ill if we are to truly help people have a real chance at survival from their condition. This signal was the sonic boom that called upon legislative bodies, advocates, and allies of people with a diagnosis to realize our paradigm for the treatment of Violent and SPMI wasn’t working.
I am not suggesting that forced treatment works perfectly. I have seen it first hand as an ACT (Assertive Community Treatment) practitioner moved treatment under an AOT order fail for potentially violent and severe and persistently mentally ill patients. I’ve seen forced treatment create hatred, anger, and self-shaming cognitive distortions above and beyond the original altered perception of clients without being enrolled in compulsory care and treatment. Indeed, the stigma that evolves from an AOT (Assisted Out Patient Treatment) label under the county department of community mental health radar is demoralizing. The branding is humiliating, infantilizing, and demeaning for many connected to an AOT service.
Today, until the day we devise another approach to treating this population of the mentally ill community, we need to push hard truly. We persist in our creativity, clinical prowess, and research to build a new paradigm to supplant this existing AOT structure to treating the Violent or SPMI folks mandated to mental health treatment. However, I’m afraid I disagree with how this treatment paradigm is sold, packaged for consumption by organizations like SARDAA and The Treatment Advocacy Center. These organizations sell these treatment modalities to advocates and legislative bodies as client-centered. SARDAA packages these laws as in the ultimate interest of the patient with a diagnosis. However, packaging couldn’t be more misrepresentative of what is happening in practice and what is happening in the lives of those mandated to AOT laws.
People mandated to treatment lose a part of their independence, autonomy, and relative status as citizens equal in the law’s name. The law confines restrictions and places limitations on people’s movement and personal freedoms under the AOT regulations. Travel, medication administration, choice in treatment staff, and frequency of contact with mental health staff and treatment teams. These mental health treatment domains are prescribed, mapped out, and monitored closely by the county government. Thus, at any given time, when the patient violates the terms of the treatment team, he or she should be prepared to be taken to the hospital for forced treatment.
The real and more immediate problem exists in client-centered care for Violent and SPMI people. Practitioners working with mandated clients believe in many documented cases that they can aggressively engage in client contact without any client input and regard for their patients’ personal beliefs and values. It is an unspoken trend with all too many workers charged with providing care of people with an AOT status. These psychiatrists, nurses, therapists, and mental health clinicians will go about treatment without regard for client-centered care and harbor an attitude that this is a punitive measure.
Despite the reality of this punitive approach, clinicians, take with AOT patients, TAC and SARDAA continue to whitewash the clinical picture for these patients and maintain AOT is not punishment. These organizations maintain these measures are to avoid further ineffective and inappropriate legal actions and sometimes criminal charges or jail time. Mental health treatment will never be the right fit for Violent or SPMI folks if the system understands this approach as a punishment for people with a diagnosis.
Kendra’s death will never be forgotten by mental health patients. For everyone with a severe mental health diagnosis who has flirted with the need for AOT treatment. We all feel the threat and loss of freedom or potential for losing our right to choose our care and treatment for our diagnosis. The loss of Kendra was subsumed by people carrying a mental health diagnosis, and we will never lose that scarlet letter that labels us and marks us as eligible under the law to lose our right if our conditions worsen. After Kendra’s death, our fate to make decisions for ourselves and care will ultimately be under the law’s provision and maintenance until a new paradigm arrives.
Thus, the real problem then becomes how these laws are, in turn, mobilized by hardliners pushing (forced) treatment for everyone deemed ‘untreatable’ in a traditional mental health setting.
While some forced treatment orders (AOT here in NY) may seemingly benefit patients in specific settings with limited options for mental health care and keep them out of the hospital for more extended periods. The greenlight for AOT or Forced treatment advocates say, “here is the proof we have that forced treatment works!” is a misnomer. The wrong approach to reforming the mental health system. Suppose there are limited treatment settings/options available in the community. In that case, the push should be to expand mental health treatment options and make them more accessible to people in need of treatment. We need to ask: why is this patient benefiting from the AOT mandate? We can offer community mental health treatment to supply this fundamental gap and need that goes unsupplied without an AOT order.
In rural communities and extremely resource-deprived urban ghettos, advocates for forced treatment are pushing to tighten the nuse around people’s necks with severe mental health issues and limit, restrict, and make people with SPMI into forced treatment when they ‘fail’ out of treatment. As I stated before, the real problem is limited access to out-patient programs and mobile treatment/crisis/respite, to name a few. These treatment areas should be prioritized to expand the choices of people who want treatment and can not access it. We need to ask: why are people falling out of therapy? Instead, these hardliners are taking steps to ensure they are forced into a treatment setting that doesn’t work for them.
Sure, access is not always the issue. Sometimes, people with severe mental health issues do not know they are ‘sick.’ I was one of them. I had no idea I was on the brink of collapsing when the first episode of psychosis emerged on my mental health landscape. Due to anosognosia, a trademark symptom of schizophrenia, lots of folks share a problem I had years ago when I was first diagnosed. People pushing for forced treatment use this symptom as their rallying cry for expanding AOT and reforming the guidelines around forced treatment–making it easier for folks to get handed a court order to take medication, be hospitalized, or be picked up and taken to the hospital when non-compliant with medication and therapy.
However, here is the issue with using this symptom as a license to expand and re-regulate Forced Treatment. I had worked with many people with severe mental health issues as their clinician when I served under an ACT Team (Assertive Community Treatment) here in New York. Some of these folks had an active schizophrenia diagnosis. Some of our patient censuses were also mandated to treatment under an AOT. However, for the folks who did not know they were sick and under our care, was our ACT team anymore successful with treatment controlling patients’ psychosis with an AOT order?
Some folks experienced relief from their severe symptoms and slowly returned to a more ‘normal’ life, gradually stepping down from AOT to a less restrictive treatment milieu. Still, we had several patients who were medication resistant and experienced zero relief from their most severe symptoms, even with medication. Even with an Intramuscular Injection (IM) and other drugs, most of these folks continued to have firmly fixed delusions and were actively psychotic.
With these severe cases, the most significant benefit of the AOT order was access to our patients. We were always able to meet and monitor our AOT patients. Expansion of AOT is not the answer to the mental health crisis–it is a bandaid and signal that we need to find the treatment that works for diverse subsections of the population requiring new treatment modalities and more research. For the most severe, chronic, and ‘hopeless’ cases, the people for whom AOT was designed to monitor and watch over. Our team was just another way for the government to mark these patients and keep them visible to the county mental health dept. That is, the whereabouts and activity of people felt were dangerous (posing a risk of serious harm to themselves or others).
The other non-issue is with folks who need treatment and do not believe they are sick or need help. Like the situation I was in years ago, patients are not in treatment yet and do not think they even need treatment because they ‘not sick.’ These are not the supposed most significant risk to the community in terms of safety, either. These folks are more of a threat to themselves and at risk of being a victim of violence. So, why then push to expand AOT? Why are these folks used repeatedly to justify expanding AOT more than anyone else? These are the stories from the Treatment Advocacy Center (TAC) about how AOT ‘saved’ Joe Mental Patient from hurting someone and finally getting the help he or she needed.
Why are these the poster patients of AOT? Because the most severely ‘disordered’ folks do not benefit from AOT. They may not benefit from any mental health treatment available. These are not the people seen on the TAC website or in the TAC stories. However, these are the folks most at risk of hurting themselves or others. The bottom line is that we need to expand further the mental health system, not just one area or silo. We need to develop access, improve medications, and all avenues and intersections of treatment. Until then, be wary of any ‘camp’ saying they have the answer to the mental health crisis.