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“Most psychiatric drugs can cause withdrawal reactions, sometimes including life-threatening emotional and physical withdrawal problems… Withdrawal from psychiatric drugs should be done carefully under experienced clinical supervision.” Dr. Peter Breggin

Apr 21, 2011

Systems of Care

Kids jumping
it's no secret...
It isn't magic, or rocket science.
We all benefit when we participate.
System of Care empowers a community. 
A System of Care has child-centered family-driven mental health and social service support.    
A System of Care has community-based services and support for children and their  families .  

"I remember clearly how, years ago, the "team" around Isaac treated you, and at the time it was clear to me that you were the only one who knew Isaac and your perspectives needed to be taken seriously."

This comment was made by my son Isaac's former guardian ad litem.  The only reason I knew Isaac's stated needs and my input were truly important (aside from my gut feeling) was the hundreds of hours of research I had done.  I discovered that as his parent, I was, according to Federal Medicaid guidelines, supposed to be driving his care plan development and implementation, with the assistance of the professionals.  No wonder it felt so totally wrong, that instead I was being told what it was going to be!  I had done my research, with the goal of finding the help my son would need for success; while avocating for his long overdue discharge from a Children's Long-term Inpatient Psychiatric facility, or 'CLIP.'  

The solution suggested by the 'mental health professionals' on staff at CSTC, was not supported by any research or data; so had to be a subjective opinion; but it was one no one would claim as their own.  Because of professional status, supposed expertise and education it the CSTC plan in my opinion, was given more weight.  Worse, the CSTC staff's plan seemed to ensure that my parental rights continued to be violated, even after his discharge from the facility!  The plan was that my son would be released from CSTC to live in a professionally run residential facility in the community.  Such a place did not even exist---so the staff then 'envisioned' creating this facility for Isaac and perhaps one other kid---A virtual 2 person hospital/house, staffed by professionals.  It was simply ludicrous.  A whole lot of effort was put into this effort that no one wanted to own as their idea.  The utter failure to be honest about where the idea originated that Isaac would not come home; or the opinion that coming home was not even considered a viable option by CSTC staff---who claimed that they had no opinion or say in the matter.  

It is years later still difficult to believe professionals who were dishonest with me; yet believed it a reasonable expectation that I would be courteous and respectful to them, not matter how my son and I were treated by them---I have to admit I was not only not respectful; I was down right rude and usually willing to show my belligerent contempt.   

I repeatedly asked the staff why the staffed residential facility was what they believed would give my son the best support to reach his potential; I never received an answer.  I was more than a little upset there was no research or evidence presented that the staff's plan was what would best serve my son.   The staff's plan was developed without any input from Isaac or myself, and it was not consistent with our wishes or the permanency plan which was developed when I was compelled to make him a Ward of the State.  

The plan for him to go from CSTC to a staffed Residential facility, was developed by CSTC staff.  The very same individuals continued to maintain that they, had 'no say' about where Isaac would live when released from CSTC.  The staff at CSTC is where the idea that Isaac may not 'come home' if/when released from CSTC originated, although no one would claim it...Leah Landis was who came the closest, and not because she was being forthright; but in my opinion she was attempting to use emotional blackmail to convince me of her superior judgement and her "wanting the best for Isaac" and suggested, I should not be in a hurry to hasten his release, before, 'the studies' were complete?!  This plan was, in my opinion, given weight, in spite of being contrary to my Parental Rights, and in spite of being contrary to the permanent plan in place from the beginning of the psychiatric kidnap phase of Isaac's 'treatment.'

I say it this way to honor a comment of Isaac's---one of the many chilling observations and pleas for rescue that I have in my memory.   Before Isaac observed, "They kidnapped me," I hadn't thought of it like that.  But my son, who was the victim, has the perspective that he was kidnapped, and I can see why---in effect, he was kidnapped, and tortured.  

The Children's Mental Health Initiative, a SAMHSA Grant Program, are grants based on research that concluded that children with SED whose families are supported in caring for them at home, achieve better outcomes and are more successful in all aspects of their lives.  That doing so is cost effective, as well.  Additionally, in researching how to best help my son, I found that the Washington State Legislature had commissioned a study costing $50,000. that came to the same conclusion.  I felt betrayed when I learned that this exhaustive meta analysis study was commissioned to inform State of Washington's children's mental health care system and had been conducted on the campus where CSTC is located.  Imagine my surprise when I discovered the Staff were in fact aware of the study and it's conclusions---yet  continued to maintain that the idea of a hospital/house was in Isaac's 'best interest,' with no explanation for why this was so.  Could it have been that the plan developed by CSTC staff would have made it easier to continue using my son as a guinea pig?  

The SAMHSA Mental Health Transformation and the Children's Mental Health Initiative grants are incentives for States to make the systemic changes necessary to better structure services to serve children and families and thereby achieve better outcomes for the children served.  By using evidence-based treatments and best practices, and providing  child-centered, family driven services; communities who have successfully made these changes have been preventing and reducing out-of home placements, inpatient hospitalizations, and juvenile justice involvement for children with SED.   Supporting these families to better care for their children, strengthens the family unit and achieves better outcomes for the children, their families and their community.  

This Federal Program is also to bring all the child serving systems into compliance with federal regulations that are well over a decade old.  In effect, the Federal Government is paying the States to actually comply with requirements more than a decade old.  The idea is simple: all child serving systems in a community that receive Federal funds must work cooperatively as a team to eliminate duplicative efforts, restructure how services are accessed and provided to better serve children with complex needs due to cognitive, emotional and behavioral issues.  Child serving systems are to eliminate barriers by sharing budgets, administrative tasks and authority where necessary to achieve this goal.   Child serving systems are to work cooperatively, with the intent that services are developed, provided and structured to better serve the children and families; recognizing that this must be the core value driving the effort.  

The communities who receive these grants are to engage the community; specifically to engage the children with SED, and their families/caregivers, and parents of adult children who are SED are to lead the effort, as the unique experience and insight gained will inform and guide the community effort. The transformation process itself is to be directed by veteran parents/guardians, and parent/guardians of SED youth; the various child serving systems:   mental health, social services, juvenile justice, and other stake holders' are needed for their valuable experience, the information they can provide to support, encourage effectively work collaboratively make the personal and systemic changes necessary to better serve kids and the community.

The Transformation grants have been successfully implemented in dozens of communities across the Nation and there is a vast data amount of information to draw from to assist communities who are now endeavoring to make the positive, although difficult changes necessary to be successful.  The Children's Mental Heath Initiative is structured the way it is to empower families to better care for their children with SED, which strengthens the families, the community, and benefits everyone.  I personally believe this program is successful because it validates parent's rights and allows them to regain their parental authority that is often diminished or taken away altogether by the traditional service system. The system has functioned utilizing the parens patriae doctrine functioning as a parent; many feel this is dis-empowering and does not achieve the best possible outcomes.

The reality is parents whose children have SED, need to have an equal voice, and not surprisingly, this idea is anathema to the patriarchal way in which services have been traditionally provided.  It  is not a change that people who have been working in these systems are embracing, but then change is difficult for individuals and systems; and humans naturally balk when changes are forced upon them.   

Even when individuals choose to change, actually making changes is still difficult and often resisted; even when it is perceived as beneficial.   It is, I believe, natural to assume that parents seeking help for a child, or identified by someone else as a family needing services, are at a disadvantage in decision making and/or their functional skills.  The mistake is then to assume that the child or parent's opinions or stated needs can or should be dismissed; due to these perceived or real deficits.  The reasoning seems to be, "if they knew what to do, they wouldn't be here needing help."   

While this very well may be true, listening to and validating them being non-judgmental and empathetic is necessary to gain confidence and earn the trust essential for success.  I think sometimes that this type of necessary listening is confused with approval, and since we tend to disapprove of the ideas and attitudes which someone has when we believe they are inappropriate.   Valid or not, this judgment can create a barrier to success.  The reality is, any professional who truly wishes to be helpful; must do the work required to gain the trust of those they serve.    

Those needing help may not in fact know how to define their problems in a way that is understood, or have any ideas or knowledge about how to address the issues involved.   In human terms, in order to have confidence in professionals, both the children and their families need to feel respected, be held in positive regard; so that trust can be nurtured.  Trust is always earned, it should never be expected.  When a child or parent is not listened to respectfully, or what they say is ignored, dismissed or invalidated, it breeds mistrust and will in fact prevent them from being fully engaged, and not allow the full benefits of any services provided to be achieved.  If a child or parent has multiple negative experiences of this type, they are likely to mistrust providers in general; and to be unable to truly benefit, unless trust is reestablished.  

Obviously, from the perspective of the provider, those whom they help often have many deficits which are difficult to deal with.  The presenting problems can be profound and to say the least, unpleasant to deal with.  Due to the roles of each, the professional in some ways, has as big of a hurdle to overcome as the individual who is in need of their help.  It is a tall order to respect, validate and encourage someone consistently enough to gain the trust necessary to develop a working therapeutic relationship.   To facilitate a person's willing participation and investment in services is a daunting task, which necessitates the professional recognizing that their role is not as an authority; but as a partner, to those served.  Many who first come into services are unpleasant, distressed and perhaps extremely dysfunctional; so it is likely many will not be easy to work with, or easily engaged in services, or even "likable.".   It must be remembered, that those who need help do not have a duty to the professional, nor do they work for the system.  The professional has a duty to those whom they serve, and although the professional works for the State, or a social service agency, the job is to serve, not to be served.  

The differences between what is needed and what is provided and/or available, and lack of knowledge about evidence based practices and/or how to provide them need to be aggressively remedied.   It is unfortunate, but there are those who need and would benefit that do not seek the help they need due to negative perceptions about mental health services or actual negative experiences with seeking help in the past.  The Mental Health Transformation and the Children's Mental Health Initiative is an opportunity for providers and families with SED children to learn skills, working together to enable children who experience difficulty to transcend their difficulties and achieve their potential.  One thing in the system that was identified as roadblock to achieving the best results for these children is the serious imbalance of power in traditional service systems, and the methods used by them.  

It is to correct this imbalance that all aspects of the mental health system transformation including services planning to implementation and planning for sustainability are to be youth centered and parent driven.   Self-Determination and autonomy are encouraged; those served are encouraged to make decisions about what they need, and those who provide services are partners and allies.  Providers have expertise and information those served need to succeed in achieving their goals.  Parents are to have an equal voice in decision making, this must be fostered and encouraged; parents who are empowered in this way are more more invested in learning the skills they need to better help their children succeed.   

It is my perception that these changes will be more difficult to make for the professionals who serve children and their families.   The Transformation necessitates that how professionals do things, how they think about and how they treat those in services must undergo a radical shift to be successful.  To change how one thinks is not easy to say the least.  Ideas, biases, behaviors and beliefs become more ingrained the longer they are held or practiced.   Parents raising SED children are frequently overwhelmed and do not trust easily.  All of these hurdles can be cleared with consistent effort.  This Transformation is not about the providers, the stake holders or the parents, it is about the duty each of us as individuals, as adults have to our selves, our family and our community; this transformation is about the children who live here who need adults in our community to perform their jobs as public employees, and publicly funded service providers to perform their jobs with integrity, purpose and without delay.  

Final note:
when I was invited to not come to any more FDDT/Systems of Care meetings by the current  project director, (at the time) Gretchen Waschke, I was told again---how the lack of progress on the project was because of me.  I was 'standing in the way of progress.'  Lack of progress couldn't possibly be due to lack of understanding of the paradigm shift required to actually transform mental health services.  There was seemingly a notion among County staff that this mental health transformation can be done by osmosis; that open communication, transparency and community involvement were tools to be used to direct the project, as County employees see fit.   Systems of Care are bey design and by definition Community driven not bureaucracy guided and directed.   

I kept insisting that the Parents of SED youth at risk of out of home placement needed to be at the table---and yes I am the person who questioned why the County, through Vicki Rich FDDT---even ones which were about function of the group, including outreach ideas, planning, purpose, who is the secretary and how many times do things get recorded as having occurred in the recorded minutes that never happened---Events did not happen, and then well, anyway "we gotta do it over to for it to be 'official.' ?!"  Knowing this was not appropriate or right, I spoke from my experience and I defended the people who should have been at the table to advocate for themselves, and their children; but were not invited...

Ultimately, the County decided that I needed to be 'put in my place'and three County employees who were 'mental health professionals' held a meeting with the other FDDT members before the scheduled FDDT meeting to plan how to 'put me in my place'.   In a meeting I am so grateful to have had two people who I had invited present;, led by Gretchen Waschke, who was there she said, "to support Vicki" I was told I was no longer the group's secretary, I was basically told to shut up and let them do their jobs.

That was well over a year ago.  Gretchen Waschke has been replaced by a woman whose work history is replete with fraudulent billing and other ethically questionable conduct.  The original Youth Director was wrongfully terminated and received an over $300,000 settlement.   The latest reports on the projects progress are universally negative.  The children and youth who are the supposed to be a priority, because they are at risk of out of home placement are still not being served.   So I guess the "lack of progress" had more to do the County employees not having a clue how to do the jobs they were hired to do after all...   

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