"An Insider's Perspective"

via ALTmentalities:

Reflections on time spent as a “researcher” in the field of children’s mental health 

02/16/2012 Posted by ALT

"For two years, I worked full time in the field of children’s mental health program evaluation and research as a “Research Project Coordinator.” My boss, the “Principal Investigator,” and I had been contracted to implement a standardized, predetermined program evaluation of what is called a “system of care” – a program that coordinates and delivers services to children with mental health challenges.   The system of care had been set up with money from SAMHSA [Substance Abuse and Mental Health Services Administration], part of the Department of Health and Human Services. 

"Any community that received funds from SAMHSA to start one of these “systems of care” – and there were over 144 of them! – had to agree to implement the full data collection protocol, which required in-depth multiple choice interviews be administered to about 250 families. Researchers were also expected to access extensive school records, court records, and medical records from the community mental health center.  Again, these research methods were implemented over and over, in every one of those 144 funded communities.

"In short, the “Children’s Mental Health Initiative” (as SAMHSA calls it) is the largest standardized children’s mental health research project ever conducted.  The datasets collected by this massive undertaking  – nearly 20 years’ worth of data on tens of thousands of families – are owned by the government and managed by a contracted firm called ICF International, which, oddly enough, also has extensive contracts with the Departments of Defense and Homeland Security.  Go figure." read the rest here

Yakima Valley System of Care Reports and Scheduled Meetings

via yakimavalleysoc.org

The fundamental flaws outlined in the SAMHSA report from the November site visit are not addressed in the Yakima County Response/plan of action; it is the proverbial elephant in the  room.  Ignoring it will bury the true positive potential of the children and families who have yet to be invited to the table in what is supposed to be an effort lead by them.  Yakima County received a grant to fund a COMMUNITY DRIVEN Mental Health REFORM project.  The children and families who are to directly benefit are intended to be at the center of this project, with the parents and caretakers driving the systemic changes necessary to more effectively serve the needs of youth with a high level of need in this community. 

Yakima County Human Services Department has historically failed the children and families in this community. In my son's case, well over $1 million dollars of inappropriate, ineffective and ultimately disabling care, was paid for by with Federal Medicaid and Child Welfare funds; at times this 'care' was forced upon without my son's or my consent or approval.  Much of it was fraudulently billed to the Federal Medicaid program.  Inappropriate, unethical care including dangerous neuroleptic, or 'antipsychotic' drugs which were not approved; and not tested for safety or efficacy for use on children, by son was used as a human guinea pig.  Teratogenic drugs were forced on my traumatized son; in spite of my vehement protests.  I was told I had 'no say' by the Medical Director of Child Study and Treatment Center, Jon McClellan, who claimed I had no say because my son was a ward of the State of Washington.  State Law then and now states a parent's right to make medical decisions for a child are not diminished or altered.

These drugs are known to cause the very conditions my son now has; conditions which have disabled him.  Neither my son nor I were warned of these risks.  My once normal, brilliant son is now cognitively, physically and neurologically impaired.  To say I am still outraged, is putting it mildly.  I protested to no avail. In effect, the State of Washington local Child Welfare office 'legally kidnapped' my son; claiming he needed to become a State Ward in order to continue having his mental health care paid for by Medicaid.  This was patently false; and it was in fact illegal.  It is fraud.  My son's eligibility for Medicaid was never at risk; he had been on Medicaid and SSI for over five years, due to severe PTSD by the time this claim was made...

However, what was done to my son, is not the issue.  The issue is the children and their families who need help now.  These children and their families are the reason I continue to speak up.  I do not want any child to experience what my son has endured.  I want families to know there is hope, there is help, and that they are supposed to be directing the mental health care provided to and for their children and families.  

The fundamental failure is that families have not been invited to the table.  The community's children and families who should be  included, and who need to be leading this opportunity are unaware of the opportunity which is intentionally being denied to them.  In over three years since Yakima County received the grant, it has been in the local paper, the Yakima Herald, two times.  This project does not "belong" to the people who work for Yakima County, or to Central Washington Comprehensive Mental Health, the two entities who have been directing the project thus far... The grant should be recognized as belonging to the children who need the care they are not getting; and to their families who are without hope of getting the help they desperately need for their children with emotional and behavioral difficulties.  When looked at from this perspective, it is impossible not to recognize the enormity of the ongoing deprivation and loss. 

here is the site visit report from SAMHSA

QUARTERLY MEETING NOTICES

Posted on March 28, 2012

GOVERNANCE BOARD meetings are held every 2^nd Tuesday of each month from 6:00 p.m. to 7:30 p.m. at Children’s Village, 3801 Kern Road, Yakima, WA .  Refreshment and childcare are provided.  Please RSVP at 574-2977 Monday – Friday, 8:00 a.m. – 5:00 p.m. to insure adequate childcare provider to child ratio and sufficient food are available, and if there is a need for interpreting services.

 The next scheduled meetings are:

April 10, 2012

May 8, 2012

June 12, 2012

FAMILY VOICE meetings are held the 1^st Thursday of each month from 5:30 p.m. to 8:00 p.m. at Children’s Village, 3801 Kern Road, Yakima, WA.  Refreshment and childcare are provided.  Please RSVP at 574-2977 Monday-Friday, 8:00 a.m. – 5:00 p.m. to insure adequate childcare provider to child ratio and sufficient food are available, and if there is a need for interpreting services.

 The next scheduled meetings are:

April 5, 2012

May 3, 2012

June 7, 2012

Youth for Community Growth Teens Reviving Equality for Everyone (YCG T.R.E.E.) youth meetings are held on the 1^st and 3^rd Sundays of every month from 3:00 p.m. to 5:00 p.m. in the System of Care office located in the Liberty Building, 32 N. 3^rd Street, Suite 410, Yakima, WA.  Refreshment is provided.  Please RSVP at 574-2977 Monday – Friday, 8:00 a.m. – 5:00 p.m. to insure an adequate quantity of food is available, and if there is a need for interpreting services.

The next scheduled meetings are:

April 1, 2012 April 15, 2012

May 6, 2012 May 20, 2012

June 3, 2012 June 17, 2012

Cultural & Linguistics Competence Team meetings are held the 1^st Wednesday of each month from 4:30 p.m. – 6:00 p.m. and will rotate meeting locations (see below).  Please RSVP at 574-2977 Monday - Friday, 8:00 a.m. - 5:00 p.m. if there is a need for interpreting services.

The next scheduled meetings are:

April 4, 2012 Washington State  Migrant Council 1100 S. 4th Street Sunnyside, WA  98944

May 2, 2012 Yakima Valley Farm Worker Toppenish Medical Center Tom Cerna Boardroom 518 West First Street Toppenish, WA  98948

June 6, 2012 System of Care office 32 N. 3rd Street, Suite 410 Yakima, WA  98901

Drug industry $ infects mental health advocacy and mental health public policy

Philip Rodenberger made $16,500. in 2010 from Astra Zeneca and Lilly when he was my son's psychiatrist. I would have liked to have known that... Philip Rodenberger is the Medical Director of Central Washington Comprehensive Mental Health. 

The project yakima Valley Systems of Care has made NAMI a partner without any real consideration given to the potential negative impact.  NAMI very well may have some good programs which people find helpful, however I for one, am critical of how biased towards the  bio-medical model NAMI's information is.  The fact is it's literature repeatedly claims that psychiatric diagnoses are in fact diseases or chemical imbalances when this is a hypothesis; not a validated theory, let alone a medical fact or certainty.  NAMI literature also repeatedly puts forth the idea how important psychiatric drugs and "treatment compliance" is; without informing people about how very dangerous, potentially disabling and/or  fatal treatment compliance can be.  While the local affiliate may not receive any money directly from the drug industry; it uses materials which were developed by the drug industry.  The information is sometimes little more than direct-to-consumer advertising; disguised as information and educational materials.  


My main complaint about NAMI however, is that NAMI offers no advocacy or support for those who have been harmed by psychiatric drugs, or by the manner in which mental health services are provided.  


My son was a normal child with a very high IQ, and instead of the recommended treatment for his severe PTSD and Temporal Lobe Epilepsy he was given massive amounts of psychiatric drugs and is now severely disabled.  He was given a diagnosis of schizophrenia even though Temporal Lobe Epilepsy is a condition which excludes a diagnosis of schizophrenia--it is a neurological condition which has the same symptoms as schizophrenia, and is caused by brain trauma.  He was the victim of a violent assault at the age of three while in foster care.   


My son will, in all likelihood, die while he is still a young man because of the damage the drugs have caused him.  I cannot help but be filled with pain over the fact that the decisions which put this chain of events in motion were without my approval, or consent; against State and Federal Law.  That said, I know in my heart that I did everything in my power to prevent the harm that was done.   I am grateful that he is home, and for the time that we have together. 


This project is to correct flaws in the system, including the ones that allowed the events which have caused my son and my family so very much harm.   It is a wonderful opportunity for this community to truly help children and their families, more effectively.  Many communities have struggled with making the systemic changes necessary to more effectively help children and their families.  This community is no exception, it is my hope that this community should not give up, but will work all the more diligently and successfully transform the mental health care system for the children who are counting on us to do so.


To clarify what "project" I am referring to is the SAMHSA grant of $9 million to Yakima County to reform the public mental health service system for children.  The last reports I have on the progress are here and here


via PROPUBLICA:

Health Advocacy Groups Take Drug Company Cash—Often Without Full Disclosures, Report Says

photo by Andrew McGill

by Marian Wang                                                         
ProPublica, Jan. 13, 2011, 4:14 p.m

We’ve reported extensively on the ties between pharmaceutical companies and the physicians they fund to speak, consult and do research. But doctors aren’t the only ones taking money from drug companies—and they’re not the only stakeholders in the field of health whose public disclosures aren’t complete.

According to a new study in the American Journal of Public Health, not-for-profit health advocacy groups like the American Diabetes Association and the National Alliance on Mental Illness also get money from drug companies in the form of grants that—more often than not—aren’t disclosed by those groups.

The study examined more than 160 health advocacy organizations that received funding from Eli Lilly in the first half of 2007. (Lilly was the first company to make its grant registry public.) Here’s what the analysis found:

As an aggregate, 25% of HAOs acknowledged Lilly funding anywhere on their Web site. Eighteen percent acknowledged Lilly in their 2007 annual report, 1% acknowledged Lilly on a corporate sponsors page, and 10% acknowledged Lilly as the sponsor of the grant event reported in the [Lilly Grant Registry.]

Health advocacy groups often advocate for research and the approval of new drugs on top of promoting public awareness. According to the study, their reputation as a trusted resource for information on specific diseases and their treatments should prompt “far more detailed” disclosure of their corporate grants and industry relationships.

This report isn’t the first time such ties have been spotlighted.

The National Alliance on Mental Illness, or NAMI, came under similar scrutiny back in 2009 when Sen. Charles Grassley, a top Republican, began making inquiries.

From 2006 to 2008, the group took in nearly $23 million in drug company donations—about three-quarters of its fund-raising. At the time, NAMI’s executive director told The New York Times that “the percentage of money from pharma has been higher than we have wanted it to be” and promised greater disclosures.

Following the revelations about NAMI, Sen. Charles Grassley sent letters to 33 health advocacy groups asking them to disclose details about their financial ties to drug and device makers. He has not released the responses he received from the groups.

Today’s report, however, highlighted continued concerns about the degree to which a group’s funding influences its advocacy and helps boost sales for drug companies making donations. Here’s an example from the report, involving NAMI:

This lack of transparency is disappointing because, either by design or through a convergence of interests, the HAOs in the current study pursued activities that promoted the sale of Lilly products.

In the area of neurosciences, Lilly gave NAMI $450,000 for its Campaign for the Mind of America. NAMI has advocated that cost should not be a consideration when prescribing for patients. ‘‘For the most severely disabled,’’ insisted NAMI, ‘‘effective treatment often means access to the newest medications such as atypical anti- psychotic and anti-depressive agents. . . . Doctors must be allowed to utilize the latest breakthrough in medical science . . . without bureaucratic restrictions to the access for life-saving medications.’’To the degree that NAMI’s campaign succeeded, the market for Lilly’s neuroscience drugs expanded.

As we’ve noted, the health care law contains a provision requiring greater disclosure of drug company payments to physicians by 2013, but it does not include company payments to health advocacy organizations.

Under the Influence 60 minutes 


via CBS News
Excerpts from Under the Influence:


One reason those profits have exceeded Wall Street expectations is the Medicare prescription drug bill. It was passed more than three-and-a-half years ago, but as 60 Minutes correspondent Steve Kroft reports, its effects are still reverberating through the halls of Congress, providing a window into how the lobby works. 

---

The unorthodox roll call on one of the most expensive bills ever placed before the House of Representatives began in the middle of the night, long after most people in Washington had switched off C-SPAN and gone to sleep. 

The only witnesses were congressional staffers, hundreds of lobbyists, and U.S. representatives, like Dan Burton, R-Ind., and Walter Jones, R-N.C.

"The pharmaceutical lobbyists wrote the bill," says Jones. "The bill was over 1,000 pages. And it got to the members of the House that morning, and we voted for it at about 3 a.m. in the morning," remembers Jones.

Why did the vote finally take place at 3 a.m.?

"Well, I think a lot of the shenanigans that were going on that night, they didn't want on national television in primetime," according to Burton.

"I've been in politics for 22 years," says Jones, "and it was the ugliest night I have ever seen in 22 years."

The legislation was the cornerstone of Republican's domestic agenda and would extend limited prescription drugs coverage under Medicare to 41 million Americans, including 13 million who had never been covered before. 

At an estimated cost of just under $400 billion over 10 years, it was the largest entitlement program in more than 40 years, and the debate broke down along party lines. 

But when it came time to cast ballots, the Republican leadership discovered that a number of key Republican congressmen had defected and joined the Democrats, arguing that the bill was too expensive and a sellout to the drug companies. Burton and Jones were among them.

"They're suppose to have 15 minutes to leave the voting machines open and it was open for almost three hours," Burton explains. "The votes were there to defeat the bill for two hours and 45 minutes and we had leaders going around and gathering around individuals, trying to twist their arms to get them to change their votes."

Jones says the arm-twisting was horrible.

"We had a good friend from Michigan, Nick Smith, and they threatened to work against his son who wanted to run for his seat when he retired," he recalls. "I saw a woman, a member of the House, a lady, crying when they came around her, trying to get her to change her votes. It was ugly." read here.


photo credit: 1 Boring Old Man

R.B., Yakama Nation Tribal Member R.I.P.

R.B. was born in December of 1995 and died January 21, 2011.
A member of the Yakama Nation, R.B. was a 15 year old Yakama Native whose emotional and behavioral issues were identified him as a youth who was a priority to be served by the Yakima Valley Systems of Care Mental Health Transformation project.   It is more than tragic that  he lived the last several months of his life in other communities, among strangers.  He was even placed in a facility out of State for a time.  He should have been right here, in the heart of Washington, were he was born, it is where all children belong, in their home communities, among their kin.

In August of 2010 Children's Administration, as his legal guardian, initiates a Children's Long-term Inpatient application.  It was THREE MONTHS before Yakima County Human Services to authorize proceeding with the CLIP application.  Why Yakima County take three months to have this application authorized? It was obviously not a high priority...

In November 29, 2010 the Greater Columbia Behavioral Health Regional Support Network held a staffing and determines R.B. eligible for a CLIP placement; which only places him on a waiting list. He is then sent to Cypress House in Lynwood, WA clear across the state in Snohomish County in early January. Cypress House staff were contracted by the State of Washington to provide line-of-sight and hearing supervision---at all times. He jumped from an Interstate 5 freeway overpass at approximately 2:30 pm on January 21, 2011. It was hours later that Cypress Hill staff were informed. They were apparently not looking for him; although they were aware he was missing, and of his fragile state.

This young man had been a Ward of the State of Washington since May 1998; when he was three years old and had been in 22 different residential facilities and foster homes.  From June 2009, until his death, he had been in a handful of staffed residential facilities.

When we were created, 

we were given our ground to live on

and from this time these were our rights. 

This is all true. 

We were put here by the Creator.

I was not brought from a foreign country 

and did not come here. 

I was put here by the Creator.

Chief Weninock,  Yakama,  1915

The Children's Mental Health Initiative: A Golden Opportunity

The State of Washington, as a participant in the Federal Medicaid program, is obligated to provide Early Periodic Screening Diagnosis and Treatment to all children who are enrolled in Medicaid; to encourage the necessary screening and to provide the mental health services to children identified, according to Medicaid Guidelines.  Washington State, like most states, has not done a very good job of providing these services; and is now  in the midst or a State-wide Mental Heath Transformation effort  to correct this oversight.   Yakima County received a six-year $9 million from SAMHSA is in the third year of this six year grant.

The SAMHSA Children's Mental Health Initiative grants are awarded to facilitate the transformation of the child serving systems to better serve all children and families to provide comprehensive evidence-based mental health treatment services to children and their families.  SAMHSA requires that the communities who receive the grants involve the youth and families in planning, implementating, and providing the services and in collecting the data required by SAMHSA.  Mental health treatment services and supports have to be Family Directed, and Child and Youth centered, in order to comply with the terms of the grant.

The Family Driven Development Team is to recruit from the community people who have raised, or are now raising children with serious emotional and behavioral issues which require services from mental health, special ed., juvenile justice, child welfare and other child serving systems which receive Federal funding; and which put them at risk of out of home placement.  

The Children's Mental Health Initiative mental heath system transformation grants are, in all reality, the Federal Government paying the State of Washington, and other States, Tribes and Governments that receive them, to do what the Federal Government ordered all recipients of Federal monies to do over twenty years ago:  To provide effective mental health and other needed services to children in a coordinated, comprehensive  manner.  In a nutshell, the Federal Government ordered states to make whatever administrative, fiscal, and service system changes necessary, and to enter into cooperative agreements which will effectively accomplish lasting systemic change; creating a system that works more effectively and cooperatively together, to serve children better.  This Federal mandate was intended to compel the States to create the changes which would allow the child serving systems to better fulfill their individual and collective missions.  A primary mission underlying each of these individual system's purpose and operations, must be to effectively help children with behavioral and emotional issues, whatever the cause; to effectively support and encourage children and youth achieve their true potential.  This goal is best achieved by helping families who have children and teenagers with intensive psycho/social/behavioral problems.  

Imagine if all child-serving systems were to combine resources, skills, experience and wisdom to eliminate barriers, address disparities, to more effectively serve these children and youth.  Imagine that intentionally, thoughtfully, members in the community share their experiences, skills and talents, imagine that as a community, we act collectively to help these kids and their families.  I imagine that when we do this, we will be helping all of us...  

I know it is possible to positively change the course of a life.  I am painfully aware that lives are not always changed for the better in the current public mental health and child welfare systems, which is biased towards the ineffective and dangerous bio-medical model of care.  I know that children and families of Yakima County and the Confederated Tribes and Bands of the Yakama Nation do not know of this project will not benefit from it.  Three years+ into what is supposed to be a community driven effort and most people in Yakima County have never heard of it.  The youth who are supposed to be a priority, the youth at risk of inpatient hospitalization, incarceration or other out of home placement, and their families, have thus far not been extended an invitation; or even informed of the opportunity passing them by... These families are supposed to be leading the effort.