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Calling the California

Yesterday, a well meaning person posted this link from CNN about 10 year old Gianni Cristini and his struggle with psychosis on our Facebook page, along with this: Can you help these people? Thank you.


The story was very familiar. I’ve both lived it and know many other families going through it right now. In fact, right now one of our friend’s 12 year old son is having felony assault charges pressed against him by the principal, teacher, and aide of the special education “ED” or “emotionally disturbed” class because he gave the aide a black eye while they were trying to restrain him. This boy has been diagnosed with autism, intermittent explosive disorder, and mood disorder NOS (not otherwise specified).


Many of you with severely mentally ill children will sadly understand this. For those of you who don’t, let me give you an analogy that would relate.


Special educators who are supposedly trained in dealing with children with “emotional disturbances” (because God forbid the school district calls them “mentally ill” because then they would have to treat them the same way they treat kids with asthma or diabetes) and who work in classrooms specifically for these children pressing assault charges is akin to going to Mother Teresa for spiritual healing and being punched in the face instead. It is like calling the police for help and getting shot… oh, wait, that actually happened to that young man who got into a car accident and was running toward the police because he needed help.


It is like praying to God for deliverance and instead God telling you to go fuck yourself. Followed by then turning to Satan (because he is the only other game in town) for help and Satan also telling you to go fuck yourself.


If neither Heaven nor Hell will take you, what exactly are you supposed to do?


I have said it before and I will say it again: if you can’t take a punch then you shouldn’t be working in mental health. You are a coward. You should not be in that position.


No excuses.


As far as I am concerned, that aide should not be in that field if he or she is going to press felony assault charges against a mentally ill 12 year old who gave him or her a black eye. I see no difference between that an a child with cancer who throws up on your shirt.


Back to the request: Can you help this family? The Cristinis.


I hate to answer that question, not because I don’t have an answer but because I don’t like the answer.


No, I can’t.


Several times now I have gotten calls from people in the Santa Clarita Valley seeking mental health services. For a long time I couldn’t figure out why until I realized that the Santa Clarita Chamber of Commerce only lists two companies under “mental health.” The Jani Foundation and the Santa Clarita Child & Family Center. The calls I’ve gotten have been from those seeking help for adults, which of course the Child & Family Center, per their name, does not provide. So we are next on the list.


When I first started getting the calls, I thought it was because they had seen us on TV. I spent thirty minutes on the phone trying to help one young man who was concerned about his uncle before I realized he thought the Jani Foundation was a care provider. More calls kept coming looking for mental health treatment. I thought surely this must be a mistake. Surely we cannot be the only listings for mental health in an area with a population of 160,000?


Oh, no.


We are. One agency largely funded by the state and a tiny non-profit desperately trying to raise enough funds to put on free play events for mentally ill and autistic kids.


Which is exactly what I have to tell these people when they call. If they give me a chance I try to give them the number to UCLA’s Resnick Neuropsychiatric Hospital but most of the time they say, “Oh. Thank you anyway,” and hang up before I can. I understand. I remember making all those dead end phone calls. I remember what it felt like to call, pouring out Jani’s entire life history, starting to feel a faint hope that maybe we might have finally found someone who can help, only to get the “I’m sorry. We don’t do that.” I always hated those people and now I am one of them. I am on the other end of the line turning people away because the Jani Foundation does not have the resources to provide what they need.


The Jani Foundation is not a national organization. Like I said, I have to beg and scrimp just to get the money to do our social events, which are getting larger as more and more families are coming. At our last event the previous Friday, a mother told me that if not for our play events, she and her son would have no friends. When I posted pictures from our last event on our Facebook page, there were a lot of statements from other parents wishing something like what we do existed in their area. Which breaks my heart. I wish I could help set up Jani Foundation franchises and fund free social events for mentally ill/autistic kids elsewhere in the country and the world, but I can’t. We have no extra funds. Everything we raise goes to our free events for the local kids and I am forever worried that I won’t raise enough to even pay for those.


What started with a few kids from the local ED elementary program has grown to the point where our most recent event cost more than all but one of our previous events (the Halloween Rocks party for the kids) combined. We don’t yet have corporate sponsors. That takes time. It takes a long time to build a charity.


And in the meantime I feel like I am presiding over one of the lifeboats from the Titanic. I am not knocking people off the boat with an oar yet but I can hear the screams in the darkness and there is nothing I can do. Our lifeboat is already full. I want to help but I need a bigger boat.


Which brings me to what this blog is really about.


Mentally ill children and their families are drowning. Sure, I appreciate CNN doing the story on the Cristinis but that story, much like ours, is just a telegraph message from the Titanic to the California that won’t be received because the California’s telegraph is turned off. Our collective stories are flares in the sky that no one will see because the larger ships that could help these families are beyond the horizon. Sure, you see them but most of you are in your own lifeboats. Or worse yet, in the water, with mere seconds left before you drown. And what is drowning? When your own son tries to kill you. When you child refuses medications and winds up on the streets. When your child is serving a prison sentence.


Drowning is when one way or another you lose you child to their mental illness.


After that, you are just the walking dead.


Thousands of families out there are clinging to the flotsam of society, trying to hold on, hoping the large ships are coming.


Except they aren’t. According to the Kaiser Family Foundation, in 1985 inpatient care accounted for 42% of mental health expenditures, the majority, with outpatient at 24%, residential 22%, and prescription drugs 7%. By 2005, inpatient was no longer the majority, down to 19% while outpatient increased to 33%, residential down to 14% and prescription drugs up to 27% (numbers courtesy of Sarah Kliff at the Washington Post via SAMSHA’s own estimations).


Well, you might say, that’s good right? The increase in prescription drug treatment has lowered the rate of inpatient, right?


Except the numbers don’t match.


The 1985 numbers add up to 95%. The 2005 numbers add up to 93%.


In polling, they would call that being “within the margin of error.” Except we aren’t polling. We are talking about people.


In 1985 there was 5% not accounted for. By 2005, that number had grown to 7%. The upshot is that the mental health “system” serves fewer people today than it did in 1985. But you knew that.


Now realize we are using numbers of adults. These percentages do not include children. No one to date has actually researched the number of children within the mental health system and what kind of care they get.


And the reduction of inpatient care is not because people have gotten better, at least not in the case of children. It is because inpatient care is by far the most expensive mental health treatment there is. Outpatient allows psychiatrists to see more patients for the pittance the insurance companies or Medicaid is willing to pay (assuming they even take Medicaid).


The anti psychiatry crowd sees this as evidence of a “Big Pharma” conspiracy to push drugs.


And you know what?


They are right.


Because the best way to treat severe mental illness in children is not through trying untested medications on an outpatient patient prescribed by a doctor that will see your child anywhere from fifteen minutes to not at all.


It’s inpatient.


Medications are the best available treatment we have but they stop working. Symptoms get worse.


If you want to treat a disease, you have to treat it where they ACTUALLY TREAT DISEASES.


In a hospital setting.


Everything else, the stigma, laughable advertising concepts of depression (Oh, there is a cute little hole in the ground following me around and I feel so sad), the reason mentally ill children get charged with felony assault by those charged with teaching them, is because SOCIETY WILL NOT TREAT MENTAL ILLNESS WHERE IT NEEDS TO BE TREATED, WHICH IS IN AN INTENSIVE AND FULLY MEDICAL HOSPITAL SETTING.


No, I am not saying bring back to institutions. Yes, I know everyone believes they warehoused the mentally ill. Actually, they didn’t. You know what they did in mental institutions? They tried to treat the most difficult illnesses on earth to treat. Yes, they didn’t always do it very well but medicine in general is a history of not getting right in the beginning.


What I am saying is that that 42% inpatient from 1985 was not from mental institutions. They were hospital beds with hospital treatment.


Somewhere along the line, we got the idea that mental illness could be treated quickly.


No, it takes a lifetime.


And the “turn and burn” methodology of today’s inpatient is not working. If we want to help kids like Gianni, we have to actually TREAT them. We have to treat their illness to the best of our ability and the best of our ability is inside a hospital where both brain and body can be monitored and treated. We are talking about a Goddamn organ for Christ’s Sake! The Brain. And you want to treat it outpatient?


No, that would be like treating cancer on an outpatient basis, which they will do but not until they stabilize the patient.


The single biggest need of the mentally ill, the single biggest step we can take toward “mental health” is to build lots and lots and lots and lots of inpatient psychiatric beds. And then stop kicking out patients after three days because the insurance company won’t authorize further stays because the patient is not an IMMEDIATE threat to themselves or others. You won’t die of cancer right now, either, but if we don’t treat it aggressively, you will.


Inpatient, inpatient, inpatient. By my estimation and estimation of those far smarter than me, we need about another 200,000 beds, and that’s just for the adults. The United States has less inpatient beds than all other industrialized nations. We have less per capita than the rest of the world COMBINED.


The Jani Foundation is just a lifeboat. You can cling to us for awhile but in the end we can’t save you.


We need a bigger boat. How many are going to have to die until the California comes?


Actually, scratch that. We need a fleet.


And fleets cost a lot of money.


But we better start spending. Because the Jani Foundation lifeboat, like so many others, is drowning under the weight of need.

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9 comments on “Calling the California

  1. A few thoughts on this:
    -I am horrified that your friend’s child is having charges pressed against him. That should not happen. If you work with kids who are labeled SED, then it’s a sad fact that you’re probably going to get hit/kicked/bitten. Maybe a good simile would be that it is like a seizure- uncontrollable, potentially harmful, and not the sufferer’s fault.

    -Should treatment, even all acute treatment, really be in hospitals? I think that the improper care is the fault of the psychiatrists. If a psychiatrist only sees someone for 15 minutes then it’s no surprise that that person winds up in the hospital, through improper care. That’s just not right. I think that when proper care is given- by which I mean at least 45 minute sessions as often as necessary- hospital stays can be reduced or eliminated. I don’t honestly see a reason for hospital stays beyond crisis stabilization (unless stabilization doesn’t happen and residential is needed, which is an entirely different story) if the psychiatrist and therapist are able and willing to see the patient. As often and for as long as is necessary.
    Some background- I am a teenager with schizophrenia and bipolar disorder. I know approximately nothing about mental health care besides what I know from my own experiences and from reading blogs.

    1. All other severe acute illnesses are treated inpatient. I think there is a strange reluctance to treat inpatient when it comes to acute or chronic severe mental illness that does not exist in other areas of medicine. If someone is having heart failure you treat in the hospital. Now I completely agree psychiatrists need to spend far more time with patients than they do but this is a workload issue and inpatient docs knowing that there is a good chance insurance won’t pay. But stabilization of acute severe mental illness cannot be done effective on an outpatient basis. Outpatient care also lacks the medical capabilities of hospitals to monitor blood work and drug reactions.

      1. I think that we may define acute differently. I define acute as “risk to self or others, either by violence or by inability to care for self”. I believe that on the first psychotic, manic, serious depressive, etc. episode the hospital is a good place to be treated, just as after a first diagnosis of heart failure admittal to a hospital is necessary. However, heart failure is often treated on an outpatient basis whenever possible. With most illnesses, it’s the patient’s choice whether or not he or she wants to be admitted to the hospital. Obviously a person who is under the influence of a psychiatric condition should not be allowed to stay out of the hospital if he or she is not capable of remaining at home safely.
        I also believe that if someone with a psychiatric condition believes that he or she should go into the hospital, then he or she should without fear of being rejected because of insurance problems. I don’t think that acute mental illness should be treated on an outpatient basis, but I think that the purpose of hospitalization is to remove acute symptoms, and that one purpose of outpatient care is to reduce the probability of having an acute episode.
        I don’t have any response to the bloodwork part. While most psychiatric medications don’t require blood testing more than once per week- which is, true, very often- I can see how it would be helpful to have daily monitoring for the first week or two, or longer, of taking a new medication.
        I think that one difference that we have is that for the mentally ill kids who you see- severe enough to be in the SED classroom, for the most part- a medication change is necessarily drastic. For less severely mentally ill people (and I say this as one of them) psychiatric medications can be slowly and safely changed without hospitalization.
        I’m not opposed to the idea that medication changes should be done in hospital. In fact, my psychiatrist wants me to go off of Haldol and I’ve thought about doing it in hospital, all at once, to monitor withdrawal symptoms and possible mania or depression from the lack of mood stabilizers. I also agree with you that hospitalization is necessary more often than it is put into action. But I don’t think that hospitalization is warranted in all cases.

      2. acadia pharmaceuticals makes a drug called pimavaserin which has passed ph3 trials and will be the first safe drug to be approved in the cns space ever. approval will be for PD psychosis while Alzheimers and scizzo will follow. I read one womans story about how her husbands hallucinations magically stopped after being on pima for 3 weeks. Acadia is located in La Jolla, Ca. Good Luck.

  2. First, you would have to have a Psychiatrist who is not in the field just to prescribe meds for a living. This is rare. Also, a 45 minute session as often as necessary? One 45 minute session can amount to at least $200 or more in cash. If you have insurance I can pretty much guarantee you will end up with a prescription writer. On top of that, a Psychologist who knows their stuff can cost anywhere from $150 and up, again, unless you choose to see someone who is covered by insurance, only costing you a co-pay of 5 to 25 bucks. I can pretty much guarantee you that they won’t have any clue as to how to help. So, after a good six months a mentally ill person will have wasted a lot of time and money. Now, are there exceptions? I’m sure there are a few, but very few. In the meantime, the caregivers become exhausted and overwhelmed. I am sure that many people with mental illnesses could remain out of hospital settings IF, proper services were provided. Socialization funding would be a great start. Maybe some funding for caregivers to have relief. I have a very long list. My experience has been that there are a multitude of phone numbers to call. The problem is, IF the call is answered, there usually is no help at the other end. The calls I made have been to government organizations, state funded organizations and local organizations. I have consistently hung up from a call seeking help and thought, “WTF? Why is this person getting paid?” (and yes, they are getting paid if they are working for the government, with tax dollars and a pension to go along with all of those paid Holiday’s). The school district is a large part of why my daughters mental illness became worse instead of getting better or at least stabilizing. In the sixth grade she was labeled as the “bad child” and I the “bad mother”. The thing is, I knew “something” was not connecting, but I couldn’t put my finger on it. Of the 14 Psychiatrists, more than 15 Psychologists, multiple (over 50) medical professionals and a boat load of Special Education teachers, I can honestly say that I can pick out Four, who actually realized something was going on and who actually cared enough to roll up their sleeves and attempt to help. Attempting to find help will not only drain a caregiver, it will put them in debt. I am still trying to get the right services for my daughter. The system is one big fat waste of money and time; filled with lazy, uneducated and greedy individuals. My daughter went to a 72 hour hold. They use a Psychiatrist who meets with as many as 30 patients within about an hour and a half. All he does is write out prescriptions and suck the insurance company for cash. During a five minute intake consult with one Psychiatrist at Henry Mayo Behavior Health, the insurance was billed for $680.00. Amazingly the insurance did not pay out, so the Psych billed my daughter. He will never see a dime but he will see some reviews that are not flattering. What makes me really sad is that there are a multitude of people with mental illnesses that have no one to advocate for them, so, as a society, we kick them to the street. I believe that if someone needs hospitalization to keep them safe then it should be available. It’s the only way someone can receive proper care, of course it hospital needs to have competent doctors who will gov proper care, there’s another problem. I realize not everyone needs the same treatment, but far too often they do need it and don’t get it. Oh, and wouldn’t it be great to speak to a doctor or doctors as if they were on your team? Yes, that would be great. The incompetent Psych who prescribes the meds to the multiple rehab patients in Valencia? He refused to speak to me even after my daughter asked him to. He changed her meds without consulting any of her regular health care professionals or myself and caused a damaging 25 pound weight increase within three weeks from meds that she is NOT supposed to take. I know, I have about 60 bottles of medications sitting in a box that have been prescribed by morons. My background? I have a 22 year old daughter who was diagnosed with a rare birth defect that went undetected for 19 years. Had brain surgery to relieve physical symptoms, no cure for her “Invisible Disability”. It takes every single solid ounce of energy in my body to keep fighting the system, searching, researching and making everyone including; doctors, Special Education School staff, mental health professionals, etc., do their job. Note: Undetected for 19 years after all of those appointments. Now that’s a lot of uneducated professionals. Our system is not a system.

  3. and one more thing, IF I can get to a place where I have time for something other than bucking the system for help, I plan to quite my full time job and become an advocate. No way can I let what I have been through go to waste. It is 22 years of my life 24/7.

  4. Why are we treated differently than others with other types of illnesses. I am a young adult with schizo-affective disorder. I can’t get hired and I want to try to take care of myself for a better life. People don’t give you a chance and I want to know why.