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American Idiots (But It Should've Been Right)

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In the United States, only a handful of hospital admissions are caused by trauma: car accident, gunshot wounds, etc. Most inpatient medical hospitalizations fall into two categories: One, you feel sick, so you go to the ER. There you are triaged, tests are run, and a likely cause of your symptoms is identified. If continued observation is necessary, you are admitted as impatient. If the condition is not considered to be life threatening or can be monitored on an outpatient basis, you are sent home.

 

The purpose of triage is to identify the likelihood of the symptoms to kill you, at least in the short term.

 

Two, you go into the hospital because you have a chronic condition that requires, for a period of time, close observation and more aggressive treatment.

 

Psychiatric hospital admissions, on the other hand, require something very different.

 

They require what is called an “incident.”

 

In other words, something really bad has to happen first, something that reveals a level of mental functioning so impaired that the individual is now a danger to him/herself or others.

 

Imagine, for a moment, that you have cancer. If cancer patients were treated like psychiatric patients, they would be told this: “Yes, you have cancer of the liver. But let’s wait until it metastasizes into your bloodstream before we start treating because, frankly, the insurance company isn’t going to approve admission just for stage 2 cancer of a critical organ. So if your cancer gets worse, then come back.”

 

Traditional medicine is about preventing the progression of a disease through aggressive treatment. Psychiatric medicine (at least within the inpatient system) is forced to allow the disease to progress simply because they know the insurance company won’t pay until there is an immediate threat to life and limb. Inpatient psychiatrists cannot step in and utilize preventative therapies (which is often just a place to feel safe, a break from the stresses of our world) to forestall a psychotic or major depressive incident. Medical doctors can say “Cancer is present. We should treat it even though it is only Stage 1.” Psychiatric doctors have no such freedom. They cannot say “This child has schizophrenia and is showing the early signs of a psychotic relapse, so let’s treat them.”

 

For those of you who attack psychiatric doctors for the exponential increase in the use neuroleptic drugs, you are targeting your vitriol in the wrong place. The doctors are pawns, all right, but they aren’t pawns of the pharmaceutical industry. At the end the day, it is Astra Zeneca signing doctor’s paychecks.

 

If a practicing psychiatric wants to get paid, or the hospital to which he or she works for wants to get paid, there is only one way they are going to get their money: If the patient’s insurance provider decides they are going to pay.

 

It is the insurance companies that want drugs. Well, not at first.

 

At first, their most preferable outcome would be a behavioral problem caused by external forces. Then they wouldn’t even have to pay for drugs.

 

Are you aware that when a psychiatrist talks to an insurance carrier for approval for treatment, especially inpatient, they are interrogated by the “doctor” in the employ of the insurance company, despite the fact that the doctor employed by the insurance company never has and never will meet the patient. The job of the insurance doctor and the purpose of the interrogation is to plant whatever seed of doubt that they can that the patient’s condition is not a psychiatric illness. They don’t suggest physical causes, of course, because their company would still be on the hook for that. No, they interrogate the doctor, questioning the diagnosis and symptoms, doing their best to suggest that some external factor is causing the symptoms, and of course the primary external force is always the parents. This is why I have yet to meet a father of a mentally ill child, primarily of a girl, who hasn’t come under scrutiny at some point for sexual abuse. When you are have a mentally ill child and are insured, the insurance carrier is going to pore over everything you as a parent do, looking for any sign that you are causing your child’s symptoms. I would have no issue with this if they did it for the right reason, but they do it because if they can prove the parent caused the child’s condition, then they are off the hook for paying. Strangely, this does not apply with medical illnesses. If your child shoots themselves in the face because they found your loaded gun lying around, the insurance carrier will still pay for the surgeries to repair your child’s face. They will not debate with the doctor if treatment should be rendered because the injury is due to the negligence of the parent. If your child has such severe diabetes to require the amputation of a foot, the insurance carrier will not interrogate the doctor about the parent’s dietary habits before authorizing payment.

 

 

Eventually, though, the doctor, over time, manages to convince the insurance company that what they (the treating physicians) are seeing is not a behavioral problem caused by an external factor but psychosis. Example, “Well, Dr.Douchebag at Blue Shield, I am pretty sure that chewing on furniture until her mouth bleeds, saying it makes her teeth feel better, is probably not the result of negligent parenting. I hate to say it, but neurotypical people just don’t tend to harm themselves thinking that it feels good.”

 

“Well, shit,” Dr. Douchebag at Blue Shield responds, “are you sure about that?”

 

“Pretty sure. The patient insists she cut up her brother’s toy with a knife and, well, that never happened. You know, I am just a board certified psychiatrist and I could be wrong but that shows a pretty clear break with reality.”

 

“Fine, then. So what drugs are you trying?”

 

“Well, I would really like to be able to observe her for a few days…”

 

“No way. If she is not receiving medication then she is not undergoing active treatment and doesn’t need to be there.”

 

“She tried to jump out of her bedroom window before she came in.”

 

“Then find a drug combination that keeps her from wanting to jump out her window.” Or, more likely….”Is she talking about jumping out her window right now?”

 

“No, Dr. Douchebag at Blue Shield, she isn’t. She says that one of her hallucinations wants her to jump off the roof but she is not sure if she wants to listen or not.”

 

“Well then, she is able to make decisions. Let her go.”

 

“I really don’t think that is a good idea. The hospital is a very different environment from the outside world. Kids generally do better in here because they are not exposed to the stressors of the outside world.”

 

“Like the parents?” Dr. Douchebag asks hopefully.  “Maybe you can refer them to some classes on how to raise a ‘difficult child.’”

 

“She’s not difficult. She’s psychotic,” the UCLA doctor patiently answers.

 

“Well, what about all this media attention this kid’s been getting: LA Times, Oprah. You know, we here at Blue Shield saw that ‘20/20’ episode. It was all about how we keep cutting off benefits. Any chance that this kid might be reacting to all these cameras following her around?”

 

“Well, then I would think that she would stay in her room and try to avoid them, not think about jumping off the roof.”

 

“But it could be stressing her out?”

 

“Again, she talks of one of her hallucinations that likes to jump off buildings and wants her to do it too.”

 

“Well, maybe suggest to the parents that it could be doing more harm than good.”

 

“I am pretty sure the parents went to the media because they weren’t getting any help. They seem to be deeply concerned with their daughter’s welfare.”

 

“And what is this crap I hear about the father interacting with her hallucinations?”

 

“Well, actually, Dr. Douchebag, there is no handbook on how to deal with a psychotic child. The father feels that it is the only way to reach is daughter and I have to say that in my observations, she talks about them a lot. It is pretty hard to engage with her if you don’t interact with them. Also, interacting with them makes her trust us enough to tell us what they are doing or telling her to do.”

 

“Yes, but he could be encouraging her.”

 

“She is not choosing to have these hallucinations, Dr. Douchebag. They exist independent of our world and anything in it. I really don’t think it is possible to ‘encourage’ somebody to see something that isn’t there. After all, I could tell you that you possess a human heart and concern for the welfare of a child over how much money your company can save until I am blue in the face, but it won’t make it true.”

 

“True enough. What about your outpatient program, ABC?”

 

“They won’t take her. She is too psychotic. She would need to be able to sit and focus for three hours and now we are lucky if she can focus for five minutes. It’s not easy to focus when you are seeing hallucinations swirling around you all the time. You do know she hallucinates 95% of the time.”

 

“What about residential, then?”

 

“There are no residential options for a child her gender and age in the state of California.”

 

“They could send her out of state. That is even the recommendation of your local Department of Mental Health.”

 

“She’s seven years old, Dr. Douchebag, and quite attached to her parents.”

 

“Well, I don’t know what the hell they expect. We can’t keep paying for her inpatient stays when there is a perfectly good Deveroux facility in Texas or Florida. She could be either a Longhorn or a Gator!”

 

“But wouldn’t you still have to pay for her care there?”

 

“Oh, hell no! We’re Blue Shield of CALIFORNIA! The insured’s coverage won’t even work outside the state. The state would pay for the whole thing.”

 

The above was my imagining of a conversation between Blue Shield and Jani’s doctor at UCLA. I am exaggerating for effect, but not by much.

 

As my last two blogs had indicated, Jani had been slipping for awhile. This was not surprising. Winter is always Jani’s most difficult time. Psychosis is like the tide. It tends to go out in summer and then come in during the winter, reaching high tide in late winter/early spring. Almost everybody I know with a mental illness is struggling right now, and some finally reached their breaking point. Chrisa, who writes the “Mindstorm” blog which you can find on my “Resources” page, lost a friend to suicide this past week, as well as a friend of mine from high school whose college roommate committed suicide on Monday. Both are casualties of war. Yes, they will killed by their mental illnesses but if I could I would put the insurance companies on trial for collaborating with the enemy. They are the Vichy government of American mental health care, the UN security council who prevented the peacekeeping forces from protecting Tutsis in Rwanda, and the Sudanese government who allows the atrocities in Darfur. My friend from high school told me today that her insurance benefits only allow one more month of therapy for her. Chrisa was once told by a doctor to give her son up to the care of the State of Illinois in order for him to get the care he needs. In Texas, you can’t get Medi-Care benefits for your mentally ill child unless you give him/her up to the State, a State better known for executing the mentally ill than helping them.

 

I suppose in Texas they believe that if you can’t take care of your child’s mental illness alone then you are just unfit to be a parent.

 

And people want me to move my family to these states just so Jani can be placed in one of these residential facilities located there and we can still see her?

 

On Monday, March 15th, I finally called to request a direct admit to UCLA for Jani. The head of the child and adolescent psychiatric unit called me back and I explained what was going on: Jani was losing enjoyment in things she used to love. She was screaming at Bodhi and throwing things at him when he started to cry (something she hasn’t done for awhile). She herself said her hallucinations were getting stronger and they were “bothering” her. Finally, there was the incident where she insisted she had taken one of Bodhi’s toys and cut it up with a knife, something that never happened. What happened in reality was that she tried to break one of his trains in half, couldn’t do it, and gave up. Yet she was convinced she had cut it up. Looking back now, maybe she needed to believe this to satisfy the voices in her head that wanted her to hurt Bodhi because he had picked up her toy slinky.

 

The doctor told me that all that was troublesome but that it wouldn’t pass muster with the insurance company. They needed a specific incident of her either hurting herself or someone else, preferably Bodhi. I couldn’t believe it. The doctor was subjugating his best judgment as a 25 year veteran psychiatrist to the will of Blue Shield, who would not consider Jani “acute” until she actually committed an act of violence, either against herself or Bodhi. Never mind that such an act of violence could very well be irreversible. What amazed me was that the doctor admitted Jani needed to come in but acknowledged he couldn’t convince Blue Shield of this.

 

Who controls health care in America, people?

 

Luckily, I suppose, the next day Jani started saying that “80” was jumping off buildings again. There are many hallucinations around Jani all the time and most are harmless but whenever 80 appears, she always jumps from high places. I called the doctor again and this time he decided to go to bat to get Jani inpatient.

 

She was released yesterday. During the seven days she was there, the UCLA doctors spent countless hours on the phone with Blue Shield, trying to convince them that Jani needed this hospital stay. On Tuesday, the day before Jani was released, I got a call from a “care advocate” at Blue Shield. These are psychiatric nurses who work for Blue Shield. Unlike the “doctors” who work for Blue Shield, they are not douchebags. But I knew exactly why she was calling. I received the nicest interrogation I have ever experienced. For that’s what it was: an interrogation. When the insurance company calls, they are looking for anything they can use against you. If you knew what was going on, you’d demand a lawyer. At first, the questions are innocuous. She wanted to know if Jani is still seeing her outpatient psychiatrist and therapist (because failure to follow discharge orders is something they can use) and how often. Once a week for psychiatrist and three times a week for therapist, I answered. Are they helping? As much as anyone can.

 

It is important to stay upbeat and positive during the conversation. You must come across like you have it all under control. Any sense of despair or gloom becomes fodder to push for residential, which everybody wants anyway. The conversation always comes back to my marriage, how Susan and I are doing, do we get any time together alone, etc? Most of the conversation focuses on are “we” getting what we need. This is not altruism. This is a trap. Blue Shield is looking to see if we are cracking under the strain, because if we are, then we are either part of the cause of Jani’s condition, or an easy argument for why she needs to go to residential.

 

I am not going to put my daughter in residential just so Susan and I can go on fucking date.

 

Most important in these interrogations, other than staying cheerful and upbeat, is to have “goals.” My goal is to try and get Jani through the summer without having to go back to the hospital. With Blue Shield, the “doctor” is the bad cop and the “care advocate” is the good cop, but they both want the same thing. They want us to confess to something that will allow them to stop paying for Jani’s hospitalizations.

 

By the way, I chose Blue Shield HMO from my work because, and only because, they had no limit on impatient hospital stays. All PPOs do.

 

Yesterday, before we picked up Jani, we had to attend yet another IEP for Jani. It was depressing to read on the IEP that the Department of Mental Health’s recommendation is for residential placement and that is also the school’s recommendation. To the school’s credit, they have accepted our refusal to send her to out of state residential placement and have worked to come up with novel solutions to Jani’s inability to function in school, unlike DMH who simply washed their hands of us when we refused their offer of placement in Texas or Florida.

 

Jani is home again now, sleeping as I write this. There was no change to her medication during her week in UCLA. What I wanted from UCLA and what I got was a break for Jani from the stresses of our world, like going to school. Jani seems recharged, although she is already slipping back into psychotic behavior. All we can do, us and the interns, is to keep going. UCLA won’t take her back. Blue Shield won’t allow it.

 

Not that I don’t miss her terribly when she is gone. But right now it is hard to remember her successes, and our successes, what she has learned about herself and what we have learned in how to help her.

 

It is hard because everybody, from UCLA to Blue Shield to the school district to Jani’s therapist advocates residential, not so much for her but for us. None of them think we can make it if we keep Jani with us, They ignore everything we have already done, such as getting two apartments, creating the intern program, interns that are Jani’s only flesh and blood friends.

 

But then, sometimes, I express my doubts that any of it is enough. I wonder if Jani is teachable. I wonder if Jani can function. I wonder if we can survive her.

 

I shared some of this with Jani’s therapist today and she told me, gently as she could, to think about residential. It felt like a betrayal, but I kept my emotions in check. She pointed out, correctly, that my body is breaking down under the strain of keeping Jani going. My body is not strong enough for her mind.

 

I nodded, but said that I couldn’t. I have many friends who eventually sent their kids to residential. I don’t judge them at all. In most cases, it saved both the child and the family.

 

But I can’t do it. It would be like cutting off my own arm.

 

Then my therapist mentioned, of all things, “that hiker who had to cut off his own arm.”

 

She was referring to Aron Ralston who, after becoming pinned under a boulder in Blue John Canyon in Utah in 1993, finally decided, after seven days, to cut off his own arm to free himself.

 

I think she said something to the effect that he did what he had to do.

 

It’s not quite the same thing. It was Ralston’s arm pinned under that boulder, not his daughter.

 

Would I do the same thing?

 

If Jani and Bodhi and Susan were waiting for me, yes I would. In a heartbeat. If they were on top of the canyon and all I had to do to get back to them was cut off my own arm, I would do that. I am not about to die for nothing. But if Jani was down there in the canyon with me, I would not. I could not. Because it is not my arm that is pinned under the boulder. It is hers. She is pinned under schizophrenia. I am not going to leave her here.

 

Susan is down here with me and so is Bodhi. The three of us are not enough to move the boulder. So the interns have come down into the canyon with us to help. They are pushing too. We are all pushing as hard as we can, but nobody is pushing harder than Jani.

 

I am not coming out of this canyon until Jani comes with me.

 

And everyday there are more people coming into the canyon with us.

 

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8 comments on “American Idiots (But It Should've Been Right)

  1. (Stupid) Question
    Michael –

    I’m moved as always by your writing and your devotion to your family. This may be a really stupid question, but I’ve been wondering… you talk about the crappy inpatient facilities in FL and TX (and I have no doubt you’re right about them being warehouses) – but are there no good residential pediatric inpatient programs ANYWHERE? I’m guessing you’re limited by finances, but I was just wondering what options are out there (viable options, that is) for parents in your position who need the kind of help that Jani needs. I guess I’d like to think that were I in your situation, there would be something out there.

    Praying for you and your family! Please keep blogging; it means a lot to us out here!

    Note from Michael: Deveroux in Texas has had serious accusations but not all Deveroux facilities or all out of state facilities are bad. Many are quite good but first, we are limited to facilities that are contracted with the LA County Department of Mental Health. We can only choose from what is presented by them. Second, she is seven and we are not ready to do it.

  2. Yeah….
    I know. I get it. ‘Nuff said about that.

    I am concerned about Jani, and maybe I’m more sensitive this week after my friend Al took his own life last Friday (I write this 90 minutes before I leave for his funeral), but I too am concerned about you. You can only help Jani out of the canyon if you aren’t pinned under schizophrenia yourself.

    Call, anytime, day or night, if you need to vent. You’ve been there for me in the dark times – let me be there for you too.

    — Chrisa

    Note from Michael: I appreciate that, Chrisa. That is why we are trying to create The Village Project. If we can get enough people into the canyon we can move the boulder collectively.

  3. I know exactly what you mean about the insurance companies and fighting with them…

    I’m a case manager, and work in a psychiatric clinic in my state. My largest cohort of clients would be schizophrenics, without a second thought. All of the clients are on Medicaid. Every three months I have to submit something (online) to the agency that manages that Medicaid dollars in my state. This thing (or “treatment plan”, as they call it) is what they use to determine whether or not someone is eligible for the level of case management services that our office provides. The majority of people that work for them are LCSWs. Some LCPCs. And, of course, some MDs. These people don’t see the clients or their actual records, only what is required to be filled in on the online “treatment plan”. Every time I submit, I get at least one kicked back, saying that it won’t go through because it isn’t “severe” enough – meaning the person hadn’t been admitted to a psychiatric hospital within the last year. Recently, one of our psychiatrists fought with their psychiatrists to allow a patient to continue services, saying that aren’t these services supposed to keep people out of the hospital? And if we take away these services, this person could, and will relapse. And I swear… I swear it’s random. The people that they question are never the ones I expect them to question. And it changes from authorization to authorization. It’s almost as if they have quotas, I swear.

    Hospitals (in my state) have to submit this same form to the same company once every three days. This means that even if someone is committed by the courts for 30 days, they don’t stay there that long. A lot of times, they won’t even be in the hospital until they’re at baseline. That’s what’s happened with two patients recently. They both had to be readmitted for lengthier stays within a month of being discharged.

    Not only is this not in the best interest of the patient, but it doesn’t make good fiscal sense either. In both cases mentioned in the above paragraph, they were both readmitted again for lengthier stays within a month after discharge. If the hospital had kept the patients for, even a week longer, they could have saved all the money spent on having them in the hospital for an additional month (during the second hospitalization). The state ends up spending far more money (in my mind).

    Note from Michael: Thank you, Christine, for sharing your experience. No, it doesn’t make any sense at all. And for you anti-government groups out there, note that Medicaid is “administered” by an outside agency, not the government. The government disburses funds to agencies who then decide how they want to spend their (your) hard earned money to maximize their bottom line. Sad.

  4. Whatever argument you’re making, I think “douchebag” is a misogynist term. Best be kind to lady parts.

    Note from Michael: Noted, and my apologies, although I have to say I never really thought of “douchebag” as misogynist.

  5. One step at a time…
    Universal, and horrifying, the lack of services for mentally ill children. The state of NM has one residential treatment facility for children. Number of beds: eight. For the whole state. The wait for an outpatient visit with a pediatric psychiatrist is 6 months, and even acutely ill children sometimes wait that long.

    Note from Michael: Thank you for sharing, Adrienne, and welcome to the online support group, by the way! I am going to use your story, Adrienne, as rebuttal the next time somebody encourages me to move the family out of California so Jani can get better “help.” Sure, she might get a residential facility but if she goes acute (and she is always acute anyway) then she is screwed in states like New Mexico. I really hope Adrienne that you share your story at the Village Project (which can be found on my “Resources” page). First, I want people to see that their tax dollars are not supported kids in desperate need. I want them to see that the mental health system is failing. Second, though, that is why Susan and I want to create “the Village Project” to replace what hospitals/agencies either don’t have the funding to do or won’t do-provide a place for mentally ill kids and families to stay together and provide them the 24hr 7 day a week support to do that.

    Get past the lack of available beds and providers, and then you bump up against just what you describe here: insurance companies that won’t pay, limit benefits, etc.

    I’d love to share some encouraging/positive words here, but I’m feeling very much like the mother of a disposable child today and that just brings out the bitter in me.

  6. I can empathize and understand on all fronts. I worked for and with insurance companies for 15 years and they are not set up for our children who have chronic conditions that cannot be “cured” in an efficient timeframe. Even when my son is acute, he is still chronic to them. Even empathetic providers like our pdoc are limited by the system even as they go overboard themselves to help us navigate it. I just want you to know that we hear you and go through it too. Wouldn’t it be nice if there was a solution……………..

    (Thanks so much for the link to the group- it has already helped me with the isolation factor). You are doing good with your expression- it does make a difference.

  7. My Own Experiance
    Michael –
    I suffer from MI, and I’m 27. I’ve actually spent time on the adult psych unit in UCLA, and i didnt have insurance and they actually took care of the whole bill. I’ve recently spent a lot of time in the adult psych unit in CA and NY and I havent had any problems with insurance i dont know if it because if the insurance I have or because I’m adult. I have had 6 hospitalizations in the last 9 months and the longest lasting 2.5 months. I’ve also spent time in a residential treatment facility as an adolescent i was 15 when i was admitted and 17 when i was discharged, to be honest it helped temporarily. As an adult things have been up and down right now things are going OK, found a good mix of meds and things are starting to look up.
    I have to give you props for hanging in there as a father with a child a MI, i know you can do it.

    Stay stong
    Macelle in New york

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