With Gratitude I Remember

My son has endured mistreatment, abuse, and civil rights violations virtually his entire life at the hands of mental health professionals, child welfare staff, and contracted service providers.  He has even been told he can not go swimming at the YMCA and a Yakima City pool by himself as an adult!  Yakima School District gave him a half day of school first through the sixth grade.  The local DSHS office Children’s Administration staff had an attitude that can best be politely described as unprofessional.

Federal guidelines state that a person cannot be denied federally funded Medicaid services by virtue of needing them for long periods, by virtue of accessing them in the past, or because their condition requires a high level of care.  The disrespectful unprofessional attitude was prevalent from my first contact when the Children’s Administration, DSHS office in Seattle asked the Yakima office to make a “courtesy” visit to the new home we had moved to.  The caseworker sent stated within 5 minutes of her arrival, “If it were up to me, you wouldn’t have got your son back.”  My then five-year-old son was in the room.  The local office referred to Isaac as “A Seattle Dump Job,” those exact words.  My son, was behaviorally disturbed because of  severe PTSD from being beat up and locked in a closet by a foster parent, Margaret Manson.  The woman was suspected of killing 4 babies while a State of Washington foster parent.  Two of these deaths were prior to my son being placed in her home.  These facts were covered up by Children's Administration, as they always are.  I was labeled as having dependent personality disorder for aggressively seeking appropriate treatment for my traumatized child.  I believed then, and I still believe, that the State has a duty to my son.  


I was asked, “If you can’t take care of him, why did you take him back?” by a Children's Administration Supervisor.  The same supervisor later lied about what had occurred at a meeting about what my son's ongoing needs were; and the services being provided were terminated.  My son was hospitalized yet again; and it cost the taxpayers $30,000 for a three week hospital stay. The services that were terminated cost $2,200. a month.  All of the treatment and support that was recommended for Isaac that I begged, pleaded, and ultimately screamed about him needing; were supposed to be available under EPSDT; required to be available for Washington State to participate in the Medicaid program.


I was ultimately illegally coerced into giving custody back to the state when he was 12.  My court appointed attorney advised I sign my “consent” for an "agreed order" called "A Consent to Place."  I wanted it put on the record the actual reason, (never getting the recommended treatment or specialized services every single  psychiatrist and mental health professional had recommended) Later, I found out at this particular court hearing, was THE ONLY opportunity the law allowed for me to put into the court record this information! The State of Washington could get the Federal government to pay a much larger share of the cost of my son's care once he was declared a ward of the state, which was one of the reasons for misleading me and illegally kidnapping my son.  I believe the other reason was so he could be used in the TEOSS Drug Trials.  I was robbed of my parental rights, but was falsely assured that I would retain my parental rights to provide Informed Consent.   State Law, Medicaid Guidelines and Child Welfare Washington State Administrative Code were in agreement, that I retained these rights; however, Jon McClellan repeatedly told me I had no say in what drugs he gave my son.  This court order is called an "Agreed Order for Consent to Place," and to be a valid legal document, it is to be signed freely by me.  I was in fact coerced--I was told that if I did not sign it, the State's Attorney would tell the Court that I was not willing to act in my son's "best interest."


Initially, he was in a group home for 10 months, at a cost of $5,000. a month.  4 times in those 10 months he left the group home without the staff on duty being aware he was missing.  2 of those times he hitchhiked home and I drove him back to the group home; and the staff person on duty was still unaware he was missing!  On another occasion, he broke his foot so severely he needed reconstructive surgery and walks with a limp to this day.  He hitchhiked to the hospital and I was called in my hospital room from the ER to inform me my son was injured and unaccompanied in the ER!  I called the group home, the staff person on duty was unaware he had jumped out a 2nd floor window, breaking both the window and his foot.


While the local DSHS Child Welfare office provided services when I forced the issue; the services were NEVER the services that were recommended for his condition and diagnosis of PTSD.  The system should have bent over backwards to provide the help he needed, since it was having been beat up and locked in a closet while in their care that he needed the help in the first place!  He in fact was victimized and traumatized in a home that had several credible reports of individuals asking the state to stop placing children with Margaret Manson. In fact, 12 reports had been filed prior to his placement.  A pediatrician, a minister and the social worker who had recommended her in the first place, among them.   If the local DSHS office and Children's Administration had a problem with the Seattle DSHS office; it was an administrative issue; not grounds for the abuse and neglect perpetrated by these public servants against my son.  Some of these people still have their jobs as public servants; some have retired with government pensions.  It is not the system that is broken, it is people who work for the system, who are not held accountable and those who are supposed to hold them accountable, that are broken.  These broken people are the reason that stories such as ours are so common.   

After the group home, it was over 4 years at Child Study and Treatment Center, the state-run psychiatric facility for children.  This picture was taken at this facility, he is leaning on the tree for support, because he was so heavily drugged, he would fall to the ground.  He also could not really smile, because of the drugs.

My son has recently felt safe enough to tell me what it felt like to be him growing up. He told me he felt that nobody that was supposed to be helping him, had any compassion for him.  When he talks about the heavy doses of anti psychotics and their “side effects” which in reality, are the effects; he in agony asked me, “how could they take so much from me mom?”  When talking about the fact he felt traumatized over and over and over at CSTC, and by the drugs, he said, “To tell you the truth, I pity them, I feel sorry for them and their morality.”  


Isaac was still in the custody of the state when he went to the psych unit for the first time, the month before he turned 7.  The caseworker, told the court that he was home and doing well; the case could be closed.  I spoke to her within the first 2 weeks of his being hospitalized, and told her it did not look good, the psychiatrist was predicting a long-term hospitalization would be required.  I told her he kept talking about Margaret and what she had done to him.  Less than an hour later, I got a call from a Seattle Police Homicide Detective, I believe his name was Don Cameron.  Margaret Manson had recently killed her fourth baby.  Isaac’s first hospitalization was for 10 months.  He came home with the need for “intensive in home services.”  He received med management--and nothing else.  The intervening years between this hospitalization and the last, an over 4 year stay as an adolescent, he was repeatedly hospitalized.  Never was his initial trauma or the repeated ongoing trauma of being mistreated by those who were “providing services” or the trauma of being separated from his brother and myself ever addressed.  Incredibly, I was advised to not bring it up, it was "not an issue"?!  


I should have listened to the homicide detective, not the psychiatrist.  I believe that was my first mistake. I had to fight for almost 2 years after the CSTC staff put on paper he no longer needed to be in the hospital, to bring him home.  It was less than 3 months before his 17th birthday. 

Currently, Isaac lives at home with me and I am his Medicaid personal caregiver.  His current assessment is inaccurate and flawed, because the assessment tool used was developed to assess physical disabilities, not the cognitive disabilities which are the result of iatrogenic injury that my son has.  Isaac chooses to live at home and I am grateful, I would be stupid to trust a system that has given me compelling reasons why it is not worthy of trust.  When wrongs do occur does NOTHING to investigate; and worse, nothing to ameliorate the harm done.  In fact these “service systems” and some of the “public servants” employed by them, have caused much more harm by attempting to cover up their own ethical and moral lapses, which harm children.  Crimes committed both by employees of the State of Washington and contracted service providers are not reported, or investigated, by mandated reporters.  There is no accountability evident to me for the grievous errors made or the outright abuse and neglect (and the harm done) that employees of DSHS, Service Alternatives, CSTC, Yakima County Human Services and Central Washington Comprehensive Mental Health have caused my son by failing to perform their jobs ethically or legally.  It is apparent to me some of the same individuals have no compassion for my seriously traumatized son.  It appears their chief concern is that he be further stigmatized.

I will say that although we have experienced many traumatic events and outrageous treatment; I know that there are those who work in and for The State of Washington, Yakima County, Service Alternatives, and Central Washington Comprehensive Mental Health who have done their jobs honestly; and who exhibit the integrity that is critical to effectively serve as public servants, it is more than unfortunate they are a minority. 

In recognition of this, I wish to say the help and support I received from attorney Randy Steckell, DSHS social workers, Sandra Street, Christine Clark; former State Senators, Alex Deccio and Jim Clements, and Kim Eaton, Yakima County Superior Court Clerk; are all individuals who have enabled me to know that I must continue to stand up for myself and my son, and to know that there are those who will and do act honorably and with integrity---because these are intrinsic qualities each of them possess. 

There are four more individuals who have made all the difference to me and both my sons.  They too, have these same traits, and when the time came, they rose to the challenge--GAL Laurie Leaverton, foster parent, Mary Anne Reideman; my Dad, Kenneth G. Murphy and my brother, Mark.  

This list is not by any means complete, but it is critical that I remember that we, as a family, do not triumph over tragedy by ourselves--alone, no one does. The people who have helped both in large and small ways, and those who continue to do so today, are to share in any victory large or small. 

One of my heroes, my son Isaac

originally posted 10-1-10 
update 4-13-2012
What any of us believes, thinks, feels, and what our intentions are, do not matter as much as much our actions.  At the end of the day, it is our actions that have the biggest impact on others, not our intentions. My primary intention is to protect and defend my son until he is able to do so for himself.  I hold onto my hope no matter what; he trusts me, and he needs to know it's possible to recover.

What were the parents of 18,800 children told?

Relevant data not collected: 
 the number of serious adverse events and fatalities.

The recent 20/20 reports on the Government Accountability Office Report on the use of psychotropic drugs titled, Foster Children HHS Guidance could Help States Improve Oversight of Psychotropic Prescriptions  focuses on foster children.

The report collected psychotropic prescription data on all of the children who were on Medicaid in five States in 2008; with the exception of two States that also had an HMO.  The psychotropic prescription rate data on the children served by the HMOs were not included in the GAO's report.
here are a few excerpts:
"The higher rates do not necessarily indicate inappropriate prescribing practices, as they could be due to foster children’s greater exposure to traumatic experiences and the unique challenges of coordinating their medical care." 13 (p.6)
                                                                                                                   
"Although a higher proportion of foster children received psychotropic drug prescriptions compared with nonfoster children, the vast majority of children receiving psychotropic drug prescriptions in these states were nonfoster children because the population of nonfoster children is much larger." (p.7)
                                                                                                               
footnote 14
"According to our experts, medications are approved based on therapeutic research and doses above the recommended level have generally not been shown to be safe or effective."(p.7)

"Dr. Naylor also noted that very little research has been done on the use of psychotropic drugs in foster children with severe symptoms. This limits the information available to providers on how best to treat their conditions."

"Our experts also said that no evidence supports the use of five or more psychotropic drugs in adults or children, and only limited evidence supports the use of even two drugs concomitantly in children.(p.14)"


The total cost for the drugs prescribed was $376 million dollars; $59 million of that was for children in foster care.

1,752 Children were prescribed five or more psychotropic drugs; 609 in foster care and 1,143 were living with parents. 3,841 infants one year and under were prescribed at least one psychotropic drug; 76 were in foster care, and 3,765 were in the care and custody of their parents; for a total of 5,265 prescriptions.  20,965 children were prescribed drugs which the drug was prescribed in excess of the recommended dosage and 2,165 of them were in foster care, while the rest, 18,800 in all, were living with their parents.  This last statistic includes children who were prescribed drugs for which there is no recommended dosage for children; because the drug prescribed is not FDA approved for pediatric use.  Some of these children were prescribed the unapproved drug in dosages that exceeded the recommended dosage for adults.

Clearly, psychotropic drugs are prescribed off label prior to obtaining Informed Consent; even when a child lives with a parent.
The diagnoses themselves, are derived by a consensus of subjective opinions; they are not diseases, neurobiological conditions or chemical imbalances identified using ethical, scientific, medical research methods. If any of the psychiatric diagnoses is in fact caused by a disease, the actual empirical proof of an underlying pathology remains elusive, as yet unidentified. In spite of this, parents and the children who are given psychiatric diagnoses, are routinely told the diagnosis means they have a brain disease, neurobiological dysfunction or chemical imbalance requiring psychiatric drugs to effectively, medically treat it. Why is this subterfuge not seen for the fraudulent claim that it is; instead of perceived to be ethically acceptable much less, a fraudulent claim embedded in standard clinical practices? If the claim a patient has a disease, or chemical imbalance is believed, belief in the fraudulent claim n effect, coerces a patient's cooperation with psychiatric treatment; treatment compliance is considered successful treatment.

It is unethical. 

It is Standard Practice. 

It is fraud.  

Why is it acceptable to mislead any patient, or the parents of a child patient?  The claim that a person has something wrong with their brain is a slur intended to manipulative behavior.  The claim is not based on empirical data or any medical finding.  Believing in the validity of the neurobiological disease paradigm does not give psychiatrists license to treat the hypothesis as if it were an established medical finding, it cannot transform the claim a patient has a disease that requires medical treatment an ethical claim for a prescribing professional to make.  A person is at risk of being coerced and/or having psychiatric treatment forced upon them as soon as they are labeled with a psychiatric diagnosis.

The guidelines written by psychiatrists to use in clinical practice by other psychiatrists and other medical professionals, are developed using the same quasi-democratic process used for formulating psychiatric diagnoses themnselves.  The reason for this is plain to anyone with average intelligence, who can read with comprehension.  In spite of the decades of research on some of the drugs, and decades of prescribing the drugs in standard clinical practice, the data collected, i.e. the  'Evidence Base;' clearly demonstrates neuroleptic, and other psychotropic drugs "effectively treat" only a minority of the people to whom they are prescribed.  The drugs are causing more people, children included, to develop physical, cognitive, metabolic and neurological dysfunctions that are disabling; adding to Medical costs paid by Medicaid, and other health insurance programs; and increasing disability program costs.

The data collected by the GAO confirms my suspicion that Informed Consent is not occurring in the public mental health system. Children who live with their parents are in no better position than foster children, when it comes to being "medically treated" for their symptoms of distress, and/or emotional and behavioral difficulties; if they are poor and on Medicaid. Informed Consent is barely paid lip-service by the mental health professionals I have dealt with over the past 20+ years.

Informed Consent is, (theoretically) an ongoing dialogue between a prescribing professional and a patient and the patient's guardian.  A professional who prescribes drugs has a duty that is supposed to be carried out in compliance with the Ethical Guidelines for Informed Consent.  The guidelines instruct professionals to openly share all relevant formation about the benefits and the risks of a proposed treatment, alternatives to the proposed treatment, (whether available or not). One alternative is to do nothing. The guidelines also state that the patient and/or guardian is not to be coerced or pressured into making a decision.  The guidelines even state that if the person wants to take time to consult with anyone else of their choosing, or have time to think about a proposed treatment recommendation, the professional is to be supportive of that decision. In my experience, it was not even acceptable to ask questions, let alone question their prescription!

I took psychotropic drugs for a decade, and have the heart damage to prove it---Heart damage I was told by the doctor who discovered it, is a well known risk of the drug I was prescribed.  I was never told about this risk by any of the three psychiatrists who prescribed the drug to me.  I have also never had a conversation anything close to what I described above with the last six psychiatrists who have prescribed psychiatric drugs to my son.  Last May, I was lied to about a well known negative effect my son has experienced due to neuroleptic drugs.  The lie was stated three times by the psychiatrist who looked me right in the eye and lied to me, he then demanded that I "must respect" him.

Information that professionals should be sharing prior an Informed Consent being obtained, is not being shared. It can be, and often is, due to the prescriber relying upon the work product of unethical psychiatric researchers, who exaggerate the benefits while minimizing the deleterious effects the drugs have on cognitive, neurological, hormonal, metabolic and cardio-vasular system functioning.  The fact the drugs have not been tested or approved for pediatric use is seldom a fact that is shared with parents who give consent; in effect, in effect, assent has been given, not Informed Consent. Providing accurate, complete information is an ethical duty that doesn't appear to be very highly valued by psychiatry.

We do not know what the parents of the 18,000 children who were prescribed drugs in excessive dosages, and/or prescribed for indications not supported by any evidence whatsoever, were told.

Based on my experience as a parent and advocate, 
I doubt any parents were informed about serious risks.

AMA Informed Consent

GAO Report
photo credit

Lucky Number 7 and Quack Master Jack

Quack Master Jack

My son Isaac, at the age of seven, was diagnosed with Temporal Lobe Epilepsy. This is a neurological condition that is number seven on a list of medical conditions which need to be excluded in order to diagnose schizophrenia; because it has the same symptoms.  He was diagnosed by a neurologist from an EEG, just prior to Quack Master Jack first "treating" my son for seven months at CSTC.

Three sevens isn't that supposed to be lucky?! 

Being educated, even though I'm not a Dorktor like Quack Master Jack, I knew that schizophrenia is a diagnosis of exclusion.  I also knew that when Quack Master Jack diagnosed my son with schizophrenia, that my son's Temporal Lobe Epilepsy and early childhood trauma were ignored by 'treatment providers' and always had been---not excluded or treated with recommended treatments; but  ignored.  Quack Master Jack ultimately excluded Temporal Lobe Epilepsy by removing the diagnosis from my son's Medical Record, a crime.

All of my son's symptoms can in fact be caused by Left Temporal Lobe Epilepsy. Quack Master Jack used my son, because research needs to be done, there are drugs to sell and Practice Parameters which an evidence-base must be developed to support and validate "scientifically" if not ethically... How lucky can one boy be!  Lucky triple number 7 and chosen to be in Quack Master Jack's TEOSS Drug Trials!

I'm not a dorktor, I'm just a MadMother; I'm thinking how in the hell could this be considered ethical; let alone be publicly funded?! It sure as hell isn't ethical; it doesn't comply with the Nuremberg Code! Since when is it permissible for a NIMH funded 'research psychiatrist' without any legal authority, to effectively strip a parent of their parental rights; strip my child in distress of his Human Rights; so that he can be used as a human guinea pig in neuroleptic drug trials?  My son was repeatedly traumatized and ultimately disabled by Jon McClellan who repeatedly told me I had no say in what he was doing to my son.  He informed me that telling me anything was a COURTESY since he did not need my approval or consent.  Jon McClellan was the only one who provided approval and consent to the unethical treatment of my son.

"in psychiatry, curing symptoms reigns suppreme (sic) over a collaborative approach. Parents who objected to medical treatment they would see as at best ill informed and at worst impaired themselves."  This is a quote from one of Quack Master Jack's former professors... The obvious flaw in this convoluted reasoning, and "professional opinion"; is that it implies that no one has the right to refuse psychiatric treatment--period.  Considering the fact that the drugs do not cure, or even treat the symptoms---for the vast majority of people with a diagnosis of schizophrenia, it is an insane justification for what was done to my son.  The drugs caused a hell of a lot of trauma, and induced iatrogenic diseases as they are well known to do...

How lucky can one boy get!

via NAMI/NYC:

How to determine if a 'physical' illness is causing what looks like a 'mental' illness. 

by Ronald J Diamond M.D. 

University of Wisconsin Department of Psychiatry 

Written and Revised (1/28/96)

(It is the 'dream' of everyone with a 'mental' illness, and their families, that the illness, can be 'cured'. Dr. Diamond is one of the most caring doctors I have met. The following is a paper he wrote for 'non medical mental health professionals' to help them determine if someone presenting with a psychiatric illness has other physical illnesses and/or a physical illness that is 'causing' the mental illness that may have been missed by others. I have, albeit awkwardly, rephrased (redited and shortened) the original (better) paper to be of relevance to families of and people with neurobiological disorders ("NBD" formerly known as 'mental illness" )

The idea is that doctors should, but often don't look for other physical illnesses in someone with NBD. Armed with the following info, you can start to look for the illness yourself, or at least insist the doctor do it. -This should not substitute for a doctor's advice- dj jaffe, ed). 

 C. Medical Illnesses that Can Present as Psychosis

7. Temporal lobe epilepsy (or partial complex seizure disorder)





4-13-2012
NOTE:
I used Jaffe as a source as a JOKE more than anything else---it fit with the 'theme'---It is quite unusual to find anything put out by Jaffe that resembles accurate information.  As for his comment, "doctors should, but often don't look for other physical illnesses;"  the reality is much more sinister than this statement implies.  Other causes are not being excluded properly before labeling a person as having schizophrenia; the fucking geniuses who diagnose schizophrenia and treat patients often medically neglect the iatrogenic; e.g. PHYSICIAN caused /AVOIDABLE, neurological, cognitive, metabolic and cardiovascular diseases they acquire as a result.   My son has had one EKG in seven years, The manufacturer of one of the drugs he takes recommendeds an EKG be done ANNUALLY; but since I am not a DORKTOR, I can't order one...or force his DORKTORS to order it.  They also do not think it is important to order the neurological work up my son should have.  You'd think it would be important: fully assessing the actual of condition of a real live guinea pig...

Temporal Lobe Epilepsy is thought to be caused by Traumatic Brain Injury--My son was the victim of violent assault at the age of three while in foster care.  Quack Master Jack knew of this trauma and recorded in Isaac's medical record that the crime had been reported to CPS as required by law...

Medicaid fraud and real world outcomes

Isaac at 17

portions of this post was originally published March 29, 2011 with the title, "Is medicaid fraud endorsed by federal agencies?"

Medicaid Fraud must be endorsed by the Centers for Medicaid; it is the only logical explanation for the rampant fraud resulting from the psychiatric drugging of children being paid for by Medicaid. (even drugs not approved for pediatric use) Drugs for "physical ailments" will not be filled by a pharmacy unless they are "approved" by Medicaid when one is on Medicaid; unless you agree before the prescription is filled to pay cash. Massive Medicaid fraud has caused publicly funded heath care costs to spiral out of control.

The Pharmaceutical Companies have been fined heavily, and paid settlements to multiple States. But what about the doctors who wrote the prescriptions and the pharmacies that filled the prescriptions for unapproved drugs? What about the children who were harmed, or died because of this fraud? It is appears that decisions were made by administrators inside Centers for Medicaid to allow this massive fraud. Why else would millions of claims for psychiatric drugs not approved for pediatric use be paid, in spite of Medicaid regulations that prohibit payment of them? The fraud has been going on for decades. My son is a victim of this massive fraud and corruption.

Ten years before there was any "approved" pediatric use for Johnson and Johnson's 'Risperdal,' it was prescribed to my son to treat aggression, treatment of aggression is still not a clinically validated or approved use of this neuroleptic drug fifteen years later. Medicaid paid for the Risperdal, ongoing for years, paid fraudulent claims filed by the State of Washington's Medicaid program, for drugs prescribed to my son, "off-label." When a drug for a severe grass allergy was needed--one time--being an "unapproved" drug according to the Medicaid program, I had to pay cash to fill the prescription. Why is there an different (unwritten) standard for psychiatric drugs? What is the point of the FDA and CMS having Regulations at all, if there is no real effort to be accountable?

The betrayal I feel for this series of events which have caused my son to be altered cognitively and physically; effectively disabling him, is indescribable.