I’ve been asked to post the comments that I made during the 2015 NAMI convention where I appeared on a panel discussing Assisted Outpatient Treatment, one of the most divisive topics in the mental health community. Panel members were asked to briefly comment on San Francisco’s version of Laura’s Law and then talk about a specific subject. In my case, it was what I have learned getting individuals with mental illnesses engaged in treatment based on my experiences with my adult son.
Remarks July 9th, NAMI Convention, panel discussion “Treatment Engagement in San Francisco: Humane or Coercion?” (Slightly edited.)
I have read San Francisco’s version of Laura’s Law and after hearing Dr. Angelica Alameida’s description of it, I would characterize it as an attempt to make coercion less coercive.
Consider the multiple safeguards in the bill’s language: A judge can only implement an AOT order if: “a referred individual is unlikely to survive safely in the community without supervision.. if a referred individual has a history of lack of compliance within a specified time period…If a referred individual has been offered the opportunity to participate in a treatment plan voluntarily…If a referred individual’s condition is substantially deteriorating. AOT must be the least restrictive placement necessary to ensure the referred individual’s recovery and stability. The referred individual must benefit from AOT.” The law requires peer specialists and family members to be involved in the process.
According to Dr. Alameida, the law is intended to engage persons who are in critical need of help not force them into treatment. All of this language is intended to insure that AOT is not used flippantly and not implemented until after every other form of treatment has been attempted and has failed.
Will San Francisco’s law placate opponents of AOT? I decided to find out by asking several of them before I came to San Francisco. All of them said they wouldn’t support this new version. “You can put lipstick on a pig,” one said, “but it still is a pig.” This critic and others said they oppose all forms of coercion. If we simply had patience, met individuals where they were, and provided them with enough community support, acceptance and love, they would recover without being coerced.
I’ve thought a lot about those critics’ argument and I am confused by it.
My son was not homeless when he became ill. He had good self-esteem. He was loved. He had access to the best doctors. He had friends. His family rallied around him. He had a bright future. He had everything that a fantastic array of community mental health services could offer. Everything.
Yet, none of that kept his illness from taking control of his mind nor did it protect us from the horror that came when he became sicker.
None of us knew what was wrong with my son when he first showed signs of psychosis while in his senior year of college. He told us that he was having trouble discerning reality from fantasy. My wife, Patti, and I arranged for him to see a psychiatrist in Manhattan. And here is an important point that I would like to make this afternoon. During my travels and talks with family members, I’ve found that during a person’s first break, they often are willing to seek help. They are confused. They don’t know what is happening to them.
The psychiatrist told me that my son either was using hallucinatory drugs or he had a mental illness. He added that we would be better off if he were taking drugs. Bipolar Disorder was described to me as an incurable mental illness. My son would have to take medication for the rest of his life. Medication that would make him constantly hungry, prevent him from a long list of activities that others his age would be participating in, possibly keep him from ever working and limit his chances of marrying, having children and living a productive life. Oh yeah, people with mental illnesses die 25 years sooner than everyone else.
What would you do if a doctor said you had cancer? You would get angry and say, “I’m going to beat this! I’m not going to let it beat me.”
That’s exactly what my son did. He refused to believe he had a mental illness. He told me that he was not one of those homeless, psychotic people wandering on the streets. He wasn’t going to take medication that dulled his senses and he refused to go see that doctor or a therapist. I do not believe this was odd behavior or a lack of insight on his part. It was a failure of our overburdened and fractured system to engage him – to partner with him.
A year later he became psychotic again. This time, he was convinced that nothing was wrong with him even though he was having racing thoughts. Terrifying thoughts. He had no insight. I tricked him into getting into the car and drove him to an emergency room. When he protested and attempted to leave, he was wrested down by hospital security guards and given a shot of Haldol, a powerful anti-psychotic. What lesson did he learn from that encounter?
His third breakdown is described in my book. He had stopped taking medication. He had become psychotic in Manhattan. Once again, I went to get him and drove him to a Fairfax County emergency room but after waiting four hours, the emergency room doctor said my son wasn’t sick enough to treat him against his will. (My son didn’t think he was sick.) My son did not pose an imminent danger to himself or others. I was told to bring him back when he did. Forty eight hours later, he broke into a stranger’s house to take a bubble bath and was arrested. But even that wasn’t enough to meet Virginia imminent danger criteria. I had to lie and claim that he had threatened me to keep him out of jail and get him put into a hospital. In this case, it was our legal system that kept my son from getting help.
A judge sentenced my son to two years of probation and during that time, he took his medication because he knew his probation officer was watching him. He recovered. He did great. He got a job, even a promotion. But as soon as his probation ended, he stopped taking his pills. I pleaded with him to take his pills. I tried logic. I made a calendar that showed when he was stable and when he wasn’t. “Here is when you were doing well,” I said. “Huh, look, you were taking your medication. Here’s is when you have been hospitalized. That happened when you were not taking your medication. Do you think that is a coincidence?” Logic didn’t work.
I’ve learned there are many different forms of coercion besides AOT. I tried to pressure him. I berated him. I tried to bribe him by paying him each day that he took his pills. When that didn’t work, I crushed his pills and he caught me hiding them in his food. Finally, I practiced tough love. I kicked him out of my house. He told me that he hated me.
One night, while living at my ex-wife’s house, he became violent. She called me and locked herself in her bedroom. I tried to reason with him but he chased Patti and me out of the house. I called the police thinking they would help him. Instead, they shot him twice with a taser. He was hospitalized again.
After he was discharged, he remained stable for a year and then stopped taking his medication. Afraid I would call the police, he got into his car and started driving. He got as far as North Carolina before he ran out of gas. The voices in his head told him that he would die if he left his car so he called me and begged me not to call the police. I arranged for him to get gas and he drove home psychotic, going off the highway twice. By this time I had read Dr. Xavier Amador’s book, “I’m not sick, I don’t need your help.” I didn’t argue with my son. I didn’t tell him that he was delusional. I tried to gain his trust. I tried to partner with him. He asked me to take him to a local safe house where he could spend the night and think about how we could work together.
That night, he walked away from that house psychotic. Fortunately, a Crisis Intervention Team trained officer picked him up and he was hospitalized again. This time he got a fantastic case manager. She gave him hope. He got a doctor who actually listened to him. The doctor prescribed pills with fewer side effects. My son moved into an apartment with two other men with schizophrenia. He got wrap around services and his case manager convinced him to become a certified peer to peer counselor. Today my son works for Fairfax County on a jail diversion team. He helps others stay out of jail. He lives in his own apartment, pays his own bills and has been stable seven years. I am tremendously proud of him!
Those who oppose AOT could look at my son and claim that it was wrap around community services and hope that finally saved him. Those who support AOT could claim it was his five hospitalizations and the courts. After all, his longest period of stability was during the period was when he was on court ordered probation and required to take medication.
So what did my son say?
This is what he told me: after five hospitalizations, being tasered by the police, and all of those frantic highs and lows, he could no longer deny that he was sick. A doctor had warned him that each time he had a break, he was actually destroying part of his brain. His older brother told him that he would not be able to see his niece unless he was stable.
My son had reached a turning point – an “aha moment” of insight, a moment of change. It was as simple and as complicated as that.
Is this sort of insight always possible? Is everyone who is sick capable of having an “aha moment” like my son’s?
I don’t honestly know. But I think his acceptance was the bedrock of his stability, change and recovery. And I would suggest that we begin working together to discover ways to encourage such “aha moments.”
How?
A good first step would be creating a mental health system that is more welcoming, more accessible and more user friendly — a mental health care system that we upload with meaningful services at the front end that address mental illnesses when they first appear, rather than cobbling together an underfunded, ineffective system that only attempts to meet the needs of an ill person after they are in crisis and are so ill that they are incapable of caring for themselves.
Rather than focusing on ways to repair the damage done by these illnesses, we should find ways to prevent that damage from ever happening.
Housing First. ACT teams. Wrap-around community services. I have seen how successful these services are in helping someone recover. I also have seen the importance of intervening with involuntary hospitalizations and with AOT when persons are so ill that we need to intervene to help them. I remember what Dr. Fred Frese, one of our most faithful and dedicated NAMI members, said when we were together on the PBS Documentary MINDS ON THE EDGE. He said that he was happy and grateful that someone loved him enough that they forced him into a hospital and didn’t abandon him. They didn’t leave him delusional to roam the streets tortured by his own thoughts. I remember my son thanking me for not giving up on him.
But I think both community services and involuntary interventions such as AOT are temporary bandages. They will fail if we don’t successfully engage the person who is sick and get an individual to understand and accept that they have an illness that is treatable. They need to partner with us in fighting their illness – in wanting to control it rather than having it control them – in wanting to get better. The “aha moment.”
I just don’t know how we do that.
What I do know is that a walk outside this San Francisco hotel or a visit to any jail or prison will confirm that what we are currently doing is not enough.
This is what I have learned dealing with my son.
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