On Friday, I was finally able to touch base with Ari Levy, Director of Programs at the Santa Clarita Child & Family Center. This was not for lack of trying on either of our parts. We had been trading voicemails messages for more than a month since Jani’s therapist terminated Jani’s therapy and we were informed that no other therapist at Child & Family was willing to work with Jani.
To briefly recap preceding events:
In mid-August, I called Dr. Levy wanting a meeting to discuss other things the Child & Family Center could do to help Jani and other children with psychosis, as talk therapy is generally not effective with mentally ill children, at least on the surface. This is because talk therapy is designed to get the child to think about his/her actions and feelings. The problem with schizophrenia or any other mental illness where psychosis is present is that what is discussed or thought about in therapy, when the child is not in a psychotic state, will not carry over into psychosis. During psychosis, the ability to rationally think is overwhelmed by the disordered thinking, meaning that for as long as the psychosis lasts, whatever “tools or strategies” that were taught before go out the window. Second, psychosis is thought, not emotion. Anxiety can and often does trigger psychosis, but any violence or inappropriate actions that occur during psychosis are driven by thoughts, not emotions. Individuals with psychosis do not become violent or self-injurous because of an inability to process emotions. In actuality, the presence of emotions, even negative ones like anger, are a positive sign because they can’t exist during a psychotic episode. Psychosis is like a record getting stuck in a grove. The thought repeats itself and will not let the individual go until something is done to relieve the thought.
In a nutshell, talk therapy doesn’t work because it is focuses on the behavior rather than the cause. It also assumes that the patient with psychosis will be able to stop and think about consequences during a psychotic episode, which is impossible because someone in a psychotic state cannot internally shift from the destructive thought. Awareness of consequences requires the patient to be somewhat rational. Without rational thought, talk therapy can’t work.
This is why I have come to believe that for patients with psychotic illnesses, an hour or so a week of sitting in therapy talking is ineffective. This is not to say that it has no value at all. It’s value over the long term is that the psychotic child (or adult) can slowly develop a relationship with the therapist, and any relationship with a flesh and blood human helps to counteract the impact of the hallucinations. If Jani hears Calalini all the time, it is incumbent upon us, those in her life, to be louder than Calalini.
But developing a meaningful human relationship is not considered a sign of success in treatment. This is because it takes a very long time to achieve (often years) and because it doesn’t “fix” the problems that brought the psychotic child to therapy in the first place. This is the fundamental way in which there is no parity between physical health care and mental health care. If you have an infection, doctors will (hopefully) continue to treat you until they have eliminated the infection, no matter how long that might take. Mental illness, on the other hand, has a cut-off point, enforced by both private insurers and state mental health care agencies. Before Jani’s story became public in the LA Times, twice Blue Shield cut off Jani’s inpatient benefits on the grounds that she was showing “no marked improvement.” I used to compare this to cutting off treatment to a patient with cancer on the grounds that their cancer hadn’t responded to the first round of treatment. I have stopped using this analogy because it doesn’t quite work. First, insurance companies actually do cut off payment for cancer treatments if they, not the doctors, feel the patient has little chance of surviving the cancer. Second, cancer can be a death sentence, particularly if it is located in an area difficult to treat. Not all cancers are created equal. Schizophrenia is perceived by the public as a death sentence, but it isn’t. We cannot cure schizophrenia, but it is well within our means to treat it and manage it well enough that the patient can enjoy a fulfilling life. Every day in this country we pour millions of dollars into prolonging the life of terminally ill patients (and I’m talking about people in their 70s and 80s, even 90s, not children-it is our moral responsibility to do whatever it takes to save the life of the young), to give them a few more months, even weeks, of what has already been a very full life, yet we won’t spend even a fraction of that money to provide a happy and fulfilling life to mentally ill children. Schizophrenia and other severe mental illnesses are not terminal diseases. Instead of spending money to isolate them from society, we could spend much less to give them the support needed to function happily within our society.
What I was proposing to Dr. Levy was a new paradigm for psychologists and therapists to work with mentally ill children. The only way the therapist can have ANY impact upon the psychosis is if the therapist is with the child WHEN IT HAPPENS. This means that sitting in an office does no good because a therapist’s office is not the real world. Instead of sitting in the office for an hour, why not go out with the child into the world for an hour? Go to a park? Go to get something to eat? Go to the mall? Go to school? Go anywhere in the real world. First of all, this inserts the therapist into the life of the mentally ill individual in the place that they live. Second, it allows the therapist to be there to help the patient get through stressful events in the real world that can trigger a psychotic episode.
I am not saying that the therapist needs to spend 24 hours a day with the patient. Putting aside their need for their own lives, which doesn’t move me that much (I’m sorry, but it doesn’t), it also doesn’t help a child or adult with psychosis deal with the reality that in the real world, people are going to come and go.
You want to know why so many parents of mentally ill children resent the mental health care system? Because while the therapist is sitting in her office passing judgment on the parents or offering inane suggestions on how to deal with a situation they know nothing about, the parents are sitting there wondering how they are going to get through the other 23 hours of the day. A child with psychosis, particularly a young child, can never be left alone, because they are never alone in their own heads. I am not saying that if left alone they will hurt themselves, although this is a significant risk. They are not dangerous and need to be watched. What they need is attention from a flesh and blood human being who will interact with them and engage with them so the focus of the child is on the person and not on the hallucination. After medications, the biggest weapon against severe mental illness is eye contact, a soft and soothing voice, time to spend, fun activities, and respect for what they say and do along. You have to want to spend time with these children, because if you don’t, they will pick up on that.
What mentally ill children need, once medication has reached the limits of what it can do, is people. You. Me. Anybody who sees these kids as worthwhile. They need people, and unfortunately they need a lot of people, because we are only human and we burn out. You have to keep the mind distracted from the moment they wake up until the moment they go to sleep, every day, for the rest of their lives, and there is no one on earth that can do that alone, although every parent I know of a mentally ill child tries.
You got to spend some time with these kids and you have to go to them. They cannot come to you.
Parents resent the system because the system makes parents do it all on their own. If you can’t do it all on your own (and no one can), residential is your only other option.
I have developed a bit of a reputation amongst other parents of mentally ill children for being opposed to residential treatment. I am actually not. What I have a problem with is that there are two options: limited outpatient care, typically once per week, of talk therapy, or residential. This is like getting a patient with a bladder infection. The first treatment is an outpatient regimen of antibiotics. If that fails, then we go straight to surgically removing the bladder and replacing it with a colostomy bag. I don’t know about you, but I would want to try some other options before they cut a part of my body out.
For those of you without mentally ill children, this is the truth: there is nothing between limited talk therapy on an outpatient basis and residential, where the child is removed from the home. It is, without question, the largest gap in health care in America.
IDEA (Individuals with Disabilities Education Act) guarantees all students the right to “an appropriate education in the least restrictive environment.” Yet, IDEA is essentially, although not legally, violated everyday because you go straight from outpatient (least restrictive) to residential (most restrictive).
We can fill that gap, which is what I was hoping to get Dr. Ari Levy at the Santa Clarita Child & Family Center to sign on to. We can offer additional therapies to fill the day for mentally ill children. How hard is it to offer art therapy? Occupational therapy? Recreational therapy? Equine and other animal therapies? Cooking therapy? Music therapy?
All you need is someone willing to teach these classes, plus a few aides (which could easily be psychologists or therapists if they aren’t too egotistical to do it).
Would these services benefit Jani only? Not at all. We know many parents of mentally ill children, many of them now in residential, who would bring their kids to such a place, just in the Santa Clarita area. Every one of these parents left the Child & Family Center because they weren’t actually helping, and the Child & Family Center happily let them go because kids like ours screw with their success rates.
If you want to have a successful impact upon a mentally ill child, throw out the monthly or quarterly progress reports. Start thinking about a year, five years, ten years. You can make a huge difference in these kids’ lives, but you have to be patient. As a point of disclosure, the State of California Department of Mental Health is now requiring all providers of outpatient services to show evidence that a course of treatment is being effective, with a time deadline of one year. Schizophrenia and other severe mental illnesses are lifetime afflictions. They need support over their entire lifetimes, not for just year. You can’t learn to manage a serious mental illness in a year. Insurance companies are worse. They give only two weeks. Get better or get out. I’d like to see them go down to the Shriner’s Hospital and pull the plug on kids with leukemia because their cancer hasn’t gone away after one year, or two weeks.
What do I want from the Santa Clarita Child & Family Center?
- Get therapists out of their offices and into the community with the kids they treat. You can’t help a child learn to function in our society unless you are willing to go out there with them.
- Introduce additional therapies: Offer equine therapy through Carousel Ranch in Agua Dulce. Carousel Ranch provides equine therapy to kids with severe mental and physical disabilities and autism. They are struggling to stay afloat. Child & Family is flush with money, both from DMH and from their private and corporate donors. Set up a program with Gentle Barn in Canyon Country, where kids receiving services through Child & Family can go once a week and feed the horses, pigs, donkeys, and chickens, along with other caretaking duties. Offer art therapy, with an art therapist who is trained to work with mentally ill/autistic children (they could probably set this up with help from the Saugus and Newhall School districts. Offer music therapy (Resnick at UCLA has a music therapist). Find a local restaurant that would be willing to open its kitchen with a cook that would teach an hour a week of cooking class (I am sure there are dozens of local restaurants that would be willing to do this).
- Have therapists go along to meet the kids at these therapy sites so that the children/teens can receive therapy as they are actually functioning in the real world.
That’s it. That’s all I want from them. I don’t think it is too difficult. I would do it myself but I don’t have Child & Family’s deep pockets. Child & Family Center could establish itself as the foremost outpatient treatment facility for childhood mental illness in America. By following my suggestions, they could create a model that could replicated all across the country.
All it takes is the will.
All of this is what I wanted from Dr. Levy back in August when I first called him. Unfortunately, I obviously didn’t articulate my desires as well as I should, because he came into Jani’s IEP wanting to cut her therapy from three days a week to one. In the same IEP, Jani’s therapist told us that she felt Jani wasn’t getting any better, which contradicted everything she had been telling us in our sessions. Dr. Levy later admitted that Jani’s therapist had been afraid to be honest with us. Afraid? Why? Okay, yes on occasion she would bring up residential, which we always refused. So was that it, then? Was that what she always believed Jani needed? Is it really that she afraid to be honest with us or that she simply couldn’t get us to accept residential?
I was hurt. I felt betrayed by this woman. So I blogged about it. In my blog I do sometimes name names. I do this because I am hoping if I drag you into the public eye, you will rise to the challenge and do a better job. This is what happened with the Newhall School District. No matter how many times the director of pupil services may have felt hurt by my statements, he never gave up on Jani and never stopped working with us. He came back each time determined to do better, even though he felt that my criticisms were not founded. He understood that I was coming at this as a parent and that if I was criticizing the district it meant they needed to show me and Susan what they were trying to do. I respect that. I respect those who can take a licking, even if they perceive it as unfair, and rise above it to make it right.
Jani’s therapist didn’t do that, however. She cut Jani off because she didn’t want to work with us. On her part, this was a short-sighted decision because it led to me mentioning her more in my blogs. At this point, it might be advisable for her to stay with Child & Family because I don’t know how she would do in private practice. Of course, not everybody reads my blog and it is, after all, just my opinion. But I wouldn’t want my child working with a therapist who cut another child off. But that’s just me. I just think that cutting off a therapeutic relationship with a child is pretty despicable.
Dr. Levy mentioned that he had asked other therapists if they would take on Jani’s case. They all said no. Dr. Levy, to his credit, actually did try to force the issue, reminding said therapists that they do in fact work for a state contracted agency and are obligated under law to provide therapy to Jani. One apparently asked him for a pen to sign his/her letter of resignation. Dr. Levy backed down.
I honestly can’t say what I would have done in his position. Part of me, the father in me, would have taken that resignation. Even more, I would have fired any therapist not willing to work with Jani just because her parents might mention them in a blog or on Bipolar Nation Radio. I have never attacked any one in this blog personally and I have only discussed their actions relative to their professional conduct, which is not protected under privacy laws. Have I been wrong sometimes? You bet. I do not position this blog as the truth. The disclaimer above says it is based on my emotional response. This is my truth. And when I have been wrong, I have always and will continue to apologize, as I did to Dr. Fine and the Newhall School District.
My feeling, and this is just my feeling, is that if you are afraid that your work with Jani might become public, then you have something to hide. If you don’t have anything to hide, if you are confident and understanding, then you have nothing to worry about. But if I have to keep my mouth shut or else Jani won’t receive treatment, then I have no way to protect Jani, do I? I have no other way to alert other parents of mentally ill and autistic spectrum kids to what can and might be happening to their children. Your private life is private and off-limits to me but your public life is public. Hell, you can go to ratemyprofessor.com and read all about my professional life. Is it all accurate? No, of course not. Some students are going to give me a bad review simply because of the grade they earned in my class. But I still have to take it because I have no expectation of privacy as a teacher. Anything I say in my classes can go anywhere. Hell, everything I’ve ever written in this blog or my old blog has been dissected and picked apart. Criticism comes with the territory.
So part of me thinks that if you are not willing to work with a mentally ill child simply because your name might get mentioned in a public forum, then you are a coward and you don’t care enough about the children you work with to put your reputation on the line.
But I also understand that Dr. Levy can’t exactly fire and replace all fifty of his therapists, if for no other reason than it would interfere with the treatment of other children. I have yet to hear from anyone who is happy with the service they got from Child & Family but that doesn’t mean they aren’t out there. Maybe I am only hearing from the ones who had severely mentally ill kids like mine.
But like it or not, the paradigm is shifting. The days where therapists can sit in their offices and talk at their patients for an hour is coming to an end, for the simple fact it doesn’t work. Of course, this will probably cause the State to cut off all outpatient funding, which would be a mistake. Outpatient therapy works. It just needs to be expanded into the lives of those the therapist claims to want to help.
Jani has been out of the hospital now for four months, her longest stretch out of inpatient care since she first went to UCLA in January 2009. When I mentioned this to Dr. Levy, he asked me what I attributed this to. I think he was surprised that Jani didn’t nosedive back into the hospital after her therapy was cut off. However, no one is more surprised by that than me. But I sensed he wanted to know if I was trying to bend the facts a bit to make it look like Jani really didn’t need residential.
No. I don’t lie. Even when it gets me into trouble.
I told him that I feel part of it is that Jani is getting older. She is maturing and with that maturity she is learning to better manage her illness. Jani will tell us when the hallucinations are bothering us. She will even tell us when she needs an extra Thorazine. I think she is coming to a comfortable balance between her world and ours.
The second factor, I told him, is that we spend every day trying to get Jani the stimulation that will help distract her. She has horse therapy twice a week and afterward we both work scooping manure and cleaning out water troughs. She cooks with me (cooking class), where we make cakes, pies, homemade bread, and Jani’s completely homemade spaghetti sauce (we even mash up fresh tomatoes). I am teaching her the major scales on the piano. Basically, Jani is back to what she was like as a infant: needing constant stimulation.
It is exhausting, but we are doing it.
The only times we start to lose her is when I have to go teach.
So the answer, Mr. Levy, is two-fold: One, Jani is getting stronger and more mature.
We, her parents, are working our asses off.