Open Letter to the President regarding Mental Health Reform

The following is a letter written to President, Barack Obama, and to respective California congressmen, by Michael John Schofield, father of January Schofield. He is the author of January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her.  The letter was featured by my dear fellow blogger and special needs parent/advocate, Mama Bear, in her post, also entitled, Open Letter to the President regarding Mental Health Reform.  It is my hope that this might reach many other parents, grandparents, and primary care givers so that we may all find a voice with which to speak for the needs of our children.  They need us to speak for them NOW, before it is too late. Please use this open letter as a format for your own words and write to your congressmen, as well as the president, urging them to work toward mental health reform. 
In addition, there is a short video clip at the end of the letter to give you a small glimpse into the life ofz parent of these challenging children such as ours...

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Open Letter to the President of the United States regarding Mental Health Reform:


President Barack Obama
The White House
1600 Pennsylvania Ave NW
Washington, D.C. 20500

Dear Mr. President,

My name is Michael Schofield and I am January Schofield’s father. Of course, you don’t know who January Schofield is. You won’t…. until she kills someone.

Writing that sentence above makes me want to vomit. It goes against every fiber of my being. My daughter is only ten years old. She loves animals. She is a fan of the band Blink-182. If you meet her after reading my opening sentences, you would think me a monster. How could I call my own child a killer?

There is a chance that January will one day join the list of names that includes Adam Lanza, James Holmes, Jared Loughner, Seung-Hui Cho, and Brenda Ann Spencer.

Why on God’s earth would I connect my precious little girl to these monsters? Because she is no more a killer than they are. It is not my daughter that might kill.

It is what is inside her brain.

January (or “Jani” as she likes to be called) has schizophrenia, a psychotic illness. Psychosis can take many forms. It can manifest as auditory and visual hallucinations.

Sometimes, these voices can take the form of voices the victim actually knows. I have known mothers who live in fear of their children because one of the “bad voices” in their child’s head is them. Try to imagine having a voice filled with hate in your head. And that voice belongs to your mother. And you are desperate to silence that voice.

Is that why Adam Lanza shot his mother? Was it her voice that he heard in his head? Was he trying to silence her in the only way he could think of?

But perhaps that wasn’t the only voice.

Some of these voices are “command hallucinations,” meaning that they command the victim to do bad things, usually to themselves but sometimes to others. Did Adam Lanza hear a voice in his head commanding him to kill those children? Did he hear the voices of children he had never met in his head, laughing at him, telling him horrible things about himself?

When he was pulling the trigger, did he even see those children as they really were? Or was his mind showing him something else, something far worse than a child? Demons? Monsters?

People who suffer from psychotic illnesses do not see the world as we see it. They see another world, other people, overlaid upon our world, our people. When we go out in public, I must walk close behind Jani, ready to steer her away from walking right into people in front of her. She does not see them until I tell her they are there, even though they are right in front of her. She has to be reminded to see what is in our world because most of what she sees is not in our world. She looks down at the ground a lot because if she raises her eyes, they will drift up, above the heads of those around us, toward the ceiling, and fixate on something swirling high above our heads that I wish I could see but cannot. I must talk to her, not to make innocent conversation, although that is what it looks like. I have to make sure that she still sees me, still recognizes me.

For there was once a time when she didn’t.

As long as she still recognizes and engages with myself and those who love her and care for her, there is hope. But make no mistake. Every moment she is awake I am challenging a world that exists only inside her head, competing with it for her attention, and, more importantly, her soul.

There is no cure for schizophrenia. To manage it, Jani takes a staggering cocktail of medications that would put you or me in a coma. 350mg of clozapine (an anti-psychotic) per day. 75mg of chlorpromazine (another anti-psychotic, better known by its trade name “Thorazine”), and 750 mg of lithium carbonate (a mood stabilizer used to reduce impulsiveness). All this just so Jani can repress her violent impulses, the commands from her hallucinations, and function. And to meet her, you would never know she was on these powerful medications. She would happily run around the White House lawn, playing with Malia and Sasha. The only thing that might strike them as strange is that Jani would probably talk about “24 Hours,” or “Eighty” or “Eighteen.” She would introduce them to your daughters as her friends. And if they looked confused, she would run off by herself, perhaps into the Situation Room, or out into the Rose Garden. You would call after her but she would tell you she was playing with “Eighty,” that she and “Eighty” were having fun.

“Eighty,” by the way, is a hallucination, a young girl about Malia’s age. “Eighty” used to tell Jani to jump off the third floor of our apartment building with her. At least for the moment, “Eighty” is not doing that anymore.

I can tell you she would not hurt your daughters. You would probably find her enjoyable, a little blonde sprite. But that is only because of the anti-psychotics that she takes. Without those medications, her pre-frontal cortex will begin to erode, much as it does with Alzheimer’s. The pre-frontal cortex is who we are. I have watched my daughter’s personality erode and I have watched her struggle to come back. She can handle being in a classroom again (the classroom being “SED” or severely emotionally disturbed, the school system’s catch-all for children who cannot function in a mainstream class). For three years she could not do this and was educated in an empty classroom with a teacher and an aide. For two and half years my wife, Susan, and I maintained two separate apartments, one for Jani and one for our then infant son, Bodhi. Jani was such a threat to Bodhi’s safety that the Department of Child and Family Services told us to either send Jani to a residential facility (of which the only options were out of state) or they would take Bodhi. We refused to send our daughter away. We refused to give up on her. So we split our family apart to keep it together, something we were only able to do through the generosity of family and friends. We alternated nights. One night I was with Jani while Susan was with Bodhi and the next night we switched. We did not want Bodhi to grow up afraid of his sister and we wanted to reduce Jani’s stress level. And it worked. We now live under one roof again. Bodhi loves his sister and Jani, free from the worst of her symptoms for now, is able to love him back.

I still get tears in my eyes when Jani walks up to another child, a real flesh and blood child, and says, “What’s your name?” Such a simple act is a titanic accomplishment for Jani. My daughter is my hero, Mr. President.

But my promise that she will not hurt your daughters or anyone else only extends as far as August 8th, 2020. Because on that day Jani will turn 18 and I will have no legal ability to influence her, to help her, to save her life and, quite possibly, the lives of those around her. Everything that Jani has achieved and still might achieve could be lost. She is allowed to refuse her medication if she so chooses, because at 18, under our current mental health laws, she becomes a “consumer,” not a patient. Without medication, she could become a dirty bag lady that people will pass on the street with disdain, the woman raving to herself that makes good citizens cross to the other side of the street. She could commit a crime with no awareness that what she is doing is wrong. Right now, she has a tendency to try and strip her clothes off if she feels any wetness. She could be arrested for that. She could be arrested for striking someone trying to help her, as she now sometimes does to us or her school staff or her behaviorists. Things that she does now that are not crimes yet will become crimes. Perhaps she will wind up in the California Department of Corrections, the largest provider of mental health services in the world.

With no medication to check the advance of the schizophrenia, there is no telling where what is left of her mind could lead her to do.

I am not asking for society to take responsibility for my child. What I am asking for the ability to continue to take care of Jani after she turns 18. Right now, I cannot legally help my child, no matter how much I may want to. I need your help, Mr. President, to change that.

There is a law that was passed here in California and signed by former Governor Gray Davis. It is called “Laura’s Law.” It allows for what is called “assisted outpatient therapy,” which is a fancy name for forced medication. If adults over the age of 18 with a diagnosed severe mental illness like schizophrenia or bipolar will not comply with their doctor’s orders to take medication, they can be legally forced to. It was named after Laura Wilcox, a 19 year old college sophomore who was volunteering at the Nevada County (California) Mental Health Clinic during her winter break from school. On January 10th, 2001, Laura Wilcox was shot to death inside the clinic by Scott Harlan Thorpe, a diagnosed schizophrenic.

Unfortunately, the bill left the decision of whether to implement Laura’s Law (based on New York State’s similar “Kendra’s Law”) to the individual counties. To date, only Nevada County has implemented it. Los Angeles County, where we reside, has fought off lawsuits brought by civil rights groups enough to implement a pilot program. All attempts by other counties to implement Laura’s Law have been stymied by litigation claiming the law violates the civil rights of the mentally ill.

Mr. President, when Jani was only two, long before she presented symptoms of her future illness, I went to see my doctor about what I thought was the flu. It turned out I had pneumonia. I was hospitalized. As part of the protocol for pneumonia, I was administered a test for tuberculosis. The initial skin test came back positive. I was moved into an isolation room. I could not see my wife and daughter without a mask and gloves. My pneumonia improved under antibiotics but only then did I discover that I could not leave. I could not leave until the secondary tuberculosis test came back negative. I was shocked and angry. I wanted to go home. My wife and my daughter needed me. But I was a prisoner by order of the State of California’s Department of Health. Until it could be confirmed that I did not in fact have tuberculosis, I could not leave because if I did I was a threat to public health.

Why is it that tuberculosis is considered a threat to public health but severe mental illness is not? Why will Jani be given a choice to destroy what she accomplished and risk herself and those around her at the age of 18? If a person has tuberculosis, we do not let them refuse treatment and return to society. We treat them, not only because of the potential danger to us but also because we consider it our moral imperative to treat the sick. Those with severe mental illness are sick, Mr. President. It is our moral imperative to treat them.

If I have my way, my daughter will have a happy and fulfilling adulthood. But that can only happen with legislative help. I am asking you, Senator Feinstein, Senator Boxer, and Representative McKeon to pass the following legislative changes that I believe if were in place now, the 26 victims of Adam Lanza would still be alive:

Introduce, pass, and sign into law federal regulations making Laura’s Law/Kendra’s Law mandatory in all 50 US states. This allows parents like myself to continue to have input regarding our children’s mental health treatment, avoiding tragedies like Newtown by making it easier to get our adult children into inpatient psychiatric care
Amend the Affordable Care Act of 2010 to include mental health parity, eliminating annual and lifetime limits on mental health care, specifically inpatient care. Right now, inpatient psychiatrists spend more time on the phone to insurance companies trying to justify the need for further inpatient care than focusing on patients. Due to the elimination of state psychiatric facilities in most states, there is no care system for the chronically mentally ill. Requiring private insurers and Medicaid to treat mental illness as they do physical illness would save untold sums in incarceration. Prisons are currently the only providers for chronic mental health. In California, over 60% of the prison population has a diagnosable mental illness.

Use incentives like student loan forgiveness to encourage more medical students to go into psychiatry. We have a severe shortage, even in major urban areas like Los Angeles.

Pass legislation mandating the Department of Health and Human Services and the Department of Education to develop a program for mental health screenings of public school students, conducted by a team of board certified child psychiatrists. Current law requires visual and auditory screening. Mental illness has a far larger impact on learning ability than a need for glasses or a hearing aide. This would allow us to identify and treat mental illness before it progresses to the point of potential violence.

Pass a budget bill allocating funds to states explicitly for the purpose of building more and better acute inpatient psychiatric facilities. Under current law, when you present to the emergency room with psychotic symptoms, if there are no beds available, you will be turned away. There is a severe shortage of psychiatric hospital beds for both adults and minors. The biggest obstacle to mental health care is not lack of insurance but a lack of facilities.

Call for Congressional Hearings to learn about severe mental illness. Let parents like us come to Washington and share our experiences. Meet our children (for those of us who still have children under the age of 18). Involve parents like us, parents who can tell you everything that is wrong with the system, what we went through, and how we are trying to protect our kids. Do not subpoena just the “experts” because they haven’t lived it. You are not an expert on mental health until you have watched it destroy your child. And do not turn to national “advocacy” groups like the National Alliance on Mental Illness because they willfully ignore the potential for violence with mental illness for fear of “stigma.” We are not concerned with stigma. We are trying to save lives. The unwillingness to face the possibility of violence leads the mainstream mental health advocacy groups to ignore our children, who suffer from the worst of the worst mental illnesses. There is no national organization that speaks for us.

You have heard only too clearly from Adam Lanza, James Holmes, Jared Loughner, and Seung-Hui Cho but it is too late for them now. When you look at them, all you can see is a killer who took innocent life. You will never get the chance to see who they were before the day they picked up a gun.

But it is not too late for Jani. You can still meet her and see who she is now. And if you give me the chance, I can introduce you to thousands of other children who are not yet the visage of a nightmare, staring blankly back from a mugshot.

Please, Mr. President, Senator Feinstein, Senator Boxer, and Representative McKeon. Help me save my child.

And everyone else’s.

Sincerely,

Michael John Schofield
Father of January Schofield
Author January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her

CC:
Senator Diane Feinstein (U.S. Senate-California)
Senator Barbara Boxer (U.S. Senate-California)
Representative Howard “Buck” McKeon (25th District-California)

Note: If you are a parent of a child with severe mental illness, I encourage you to use to this letter as a template, changing it to include your child and your child's symptoms, then mail to the White House at the address above. The White House and your members of Congress need to see your letters and emails. They need to see the magnitude of the problem that led to the tragedy at Newtown, CT. You can submit emails to President Obama here: http://www.whitehouse.gov/contact/submit-questions-and-comments. You can also call the White House at 212-456-1111.

You can find and contact your US Senators here: http://www.senate.gov/ and your member of the US House of Representatives here: http://www.house.gov/

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Link to Michael’s Blog:

Jani on Born Schizophrenic:







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1 comment:

  1. Happy Friday!
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    Nan
    www.blogshe.net

    ReplyDelete

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