Advocates dialogue for meaningful mental health reform, pure and simple

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The advocates dialogue on assisted outpatient treatment held earlier this week was a defining moment for the Children's Mental Health Network. At the heart of the Network is the determination to be a "collective voice" of those dedicated to improving services and supports for children, adolescents, young adults and their families. This dialogue was that and more, and is emblematic of who we are as a movement. Network faithful should be proud.

Eight brave advocates spanning the spectrum of opinion on the topic of assisted outpatient treatment, came together to break bread, enjoy the spirit of each others company, and share the pain and frustration that is inherent in dealing with decisions affecting personal choice.

At the end of the dialogue, I asked each of the participants to do a brief writeup of their reflections on the experience of coming together. If you do nothing else, read each of the personal reflections. The writings will give you hope and encouragement that we, the people, can lead the way on this issue and provide useful guidance to legislators as they work to develop meaningful mental health legislation. 

HR 3717 has raised the most passionate discussion about the mental health service delivery system in America in a long time. The idea for holding these dialogues emerged from a spirited discussion between myself, Martin Rafferty, Congressman Murphy's Chief of Staff and key legislative staff. For that, all Network faithful should thank Congressman Murphy for shining a bright light. You don't have to agree with him, but you should thank him. 

Now it is our turn to roll up our sleeves and get to work. We will be convening a dialogue in late September to continue our focus on assisted outpatient treatment. Our long-range plan is to hold dialogues on all of the key issues raised during the discussion of mental health reform this past year. Remember Network faithful, the goal is meaningful, effective and comprehensive mental health reform, pure and simple.

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scott

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network
 

Reflections on the AOT dialogue

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The personal is the political. My thirteen years as a mental health activist have been fueled by deep tragedies. I was born to two parents who were diagnosed with schizophrenia and bipolar disorder. I had the misfortune of spending 30 years of my life helplessly watching them steadily decline until they both died quite young. My mother, once a promising young artist and poet, was under some form of outpatient commitment and guardianship for large swathes of her life. She was so traumatized by the coercive “treatments” that she was subjected to in Milwaukee state hospitals — including forced medication with antipsychotic drugs, as well seclusion and restraint — that she fought further help, until she died at age 46 due to the effects of antipsychotic-induced metabolic syndrome and a broken heart.

My father, who had an encyclopedic memory and was full of ambitions in the technology sector, largely complied with his mental health treatment, but never had a good quality of life, either. Though our family did our best to support him through a maze of broken systems, he was largely isolated in his community, and was so overmedicated that he slept for 18 hours a day. No one would hire him, and he was thwarted from achieving his dreams. He died suddenly and shockingly at age 63, also due to toxicity from extreme overmedication and a broken spirit.

And I myself have also struggled with psychiatric disability and the medical/social responses to it for all my life. As an adolescent, I spent much of my adolescence marking off the days in various facilities and institutions. I was given many diagnoses and plenty of pills, but was denied compassion, education, dreams, opportunity, and hope. As a young adult, I almost ended up spending my life in a decrepit, filthy, frightening group home, where I was told I “belonged.”

But I managed to get on a different path — in large part, due to the support of my family and supportive educators, as well as discovering the movement of my peers who understood me, because they had similar experiences with psychiatric care and society’s stunning apathy and lack of compassion. There, I found true belonging.

We all agree that our systems are broken. The problems we face are grave. Young men in distress are opening fire in schools and communities. Four people with psychiatric disabilities have been killed by the police in the last two weeks. People are warehoused in prisons and systematically abused; left to wander the streets fighting their voices; are dying by suicide in droves; lack access to basic human needs such as housing, education, meaningful work, and social connection; face blatant discrimination and scorn in all spheres of life; and have little to no options in empathic, services or supports for themselves or their loved ones. I think the folks who are reading this letter are well aware of what we are dealing with here.

But advocacy groups, the general public, and Congress, face a clash of perspectives about what to do to fix this mess. Over the last 13 years, I have come to see how opposing views in the mental health advocacy world around liberty and privacy, whether “right” or “wrong,” have blocked the social justice we all want to see.  These divisions have led to a situation where we all lose. But the people who lose most are the most voiceless and powerless in our society. People like Kajieme Powell, a man with a psychiatric disability who was gunned down by police in St. Louis recently. Or Andre Lane, an inmate who was brutalized by COs at Riker’s Island. Or Esmin Green, who was involuntarily committed to King’s County Hospital and died after 24 hours in the waiting room, in line to get “treatment.” Or foster children who are given drugs, not love

Breaking the cycle of violence and suffering 

I’ve been learning about the concept of dialogue since I was in college working for justice and peace in the Middle East in the mid 1990s. I found mentors in Len and Libby Traubman. Len and Libby have been champions of the “public peace process,” based on the premise that while governments are the official bodies that make laws and agreements, “newer ideas and sustainable implementation depend on public consent and involvement.”

I’ll be honest: when Scott asked me to participate in a dialogue with some folks who have been diametrical opponents in the policy sphere, my first internal reaction was fear and “hell no.” But then I remembered what my mentors had written years ago – the first step is simply willingness to engage and to keep an open mind and heart: 

  • Sensitive to political or even physical risks, citizens may be reluctant to talk with "the enemy." The most likely participants are those who have courage, and who recognize that current methods are not working and could lead to future failure, even disaster.  

So I immediately said yes, despite my trepidation, and joined the “Defiant 8.”

Dialogue is very foreign to our conflict-ridden, debate-based society, which starts from our most divisive issues and invites endless rounds of verbal and written combat that generally serve to deepen entrenched positions. I suspect that all too often, debate shuts off the very innovation and creative thinking that we desperately need right now. We’ve got lots of intelligence in this world. What is lacking is heart.

Getting together as we did, in the spirit of dialogue and a willingness to listen, reconfirmed for me that we have far more common ground than issues of contention. 

I don’t know what is to come, but I have no choice but to remain hopeful in these challenging times. I can’t afford to sit in despair.

My hope is that we can begin a small ripple effect in our communities, generating the will for social justice. Until we do that, these deep and painful divisions will continue to be played out in our communities and in Congress, and we will never get the kind of excellent, comprehensive bipartisan legislation (and the public will to implement it) that struggling American people and families need to achieve our most cherished ideals of life, liberty, and the pursuit of happiness. 

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Leah Harris is a mother, storyteller, survivor, advocate and the Director of the National Coalition for Mental Health Recovery. She has written widely to promote human rights, dignity, healing, and self-determination, and has spoken at advocacy/activist gatherings and conferences including NARPA, Alternatives, and the National Conference on Organized Resistance (NCOR). Her writing has appeared in publications including Off Our Backs: a Women’s Newsjournal, Adbusters.org, CounterPunch, Street Spirit and theicarusproject.net. Her spoken word album, “Take Refuge,” chronicles her journey from suicidal patient to human rights activist. 

We came, we spoke, what now?

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I live in what is sometimes called the "bluest state." Advocacy for all rights -- educational rights, human rights, legal rights-- is strong here. When the arguments about Assisted Outpatient Treatment (AOT) began, it seemed so obvious that no one's rights should be limited or reduced. Who would think that was a good idea? I wasn't sure that AOT had much to do with me or the families I know. And yet....

I started to listen to the stories of broken systems, of desperate measures in a different way. I was personally lucky that when my son became an adult that our life didn't feel that desperate. It could have. But other parents tell stories of their young adult son or daughter, living still at home as so many of their peers still do, rejecting treatment and turning away from services. There are often younger brothers and sisters there too, watching as a terrible crisis happens, or the police are called. Parents say, If they were younger I could insist on treatment or even go to court. It's still my job to make things better, they say, and make things better for all of us in this family. But I feel helpless and sometimes out of options, they tell me.

Those voices and stories were in my mind and heart when the Children's Mental Health Network created a meeting, and space for all of us to talk and to listen. We talked about our experiences and our passion. We talked about our hopes --- that a mental health bill can create change that is thoughtful and needed and meaningful. We talked about our fears -- that when you give someone a legal hammer that everything might look like a nail. And I thought about all the stories that I carry in my own heart, my own and many others.

Opportunities like this one rarely come along. The Defiant 8 had a difficult conversation, not because it was contentious but because we brought our hopes and fears with us. But they sat in our back pockets while we listened to each other with respect and caring. I believe that will create a way forward.

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lisaLisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.

We owe it to legislators to change the tone of our debate

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The mental health advocacy community is so deeply divided on the question of involuntary treatment that it is probably generous to call us a “community” at all. I have often wished we could dial down the vitriol and discuss issues like AOT with a mutual recognition that we are all good people with the same laudable goal of helping folks with severe mental illness maintain safety and sanity.

It seems Pollyanish to think that by overcoming this acrimony, we might find a path to resolving our policy differences and forge a common agenda. But for me, the need to change the tone of our debate is really about what we owe to the policymakers, legislators and fence-sitters who are listening in and hoping to learn something from us.

Right now we are generating heat at the expense of light. We risk squandering the moment of national focus that Rep. Murphy's bill has brought to our issues.

The noble experiment that Scott led us through this week was a great first step. I gained a lot from connecting with each of my fellow participants and learning about the personal (mostly painful) experiences that led each to his or her current perspective. And now that we are all pals, I look forward to getting right back to talking about -- yes, even debating  -- AOT and the various other controversial pieces of the Murphy bill.

If we can pull that off without falling into the old trap of impugning each other's motives and integrity, we will have truly earned the right to call ourselves the "Defiant 8," by defying the toxic political culture of our times. Who knows, we might even inspire some brave souls in Congress to defy the forces of gridlock and reflexive partisanship. 


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brian

Brian Stettin is the Policy Director of the Treatment Advocacy Center, a national advocacy organization based in Arlington, Virginia that works to remove legal barriers to the treatment of severe mental illness. In 1999, as an Assistant New York State Attorney General, Brian was instrumental in conceiving and drafting "Kendra's Law," landmark legislation establishing Assisted Outpatient Treatment (AOT) in New York. After leaving the Attorney General's Office in 2007, Brian served as Special Counsel to the New York State Commissioner of Criminal Justice Services and Counsel to the Health Committee of the New York Assembly.  Since joining the Treatment Advocacy Center in 2009, Brian has worked with state legislators and policymakers across the U.S. to improve mental health commitment laws and establish AOT programs. Brian is a 1991 graduate of the City College of New York and a 1995 graduate of the University of Texas School of Law.

Dialogue on AOT uplifting, enlightened, and hopeful

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Pretty much everyone in the mental health community agrees that something needs to be done to address our nation's broken mental health care system. Unfortunately, the debate about what that solution should look like has taken an ugly turn, filled with the kind of vitriolic  personal attacks that are usually reserved for midterm elections. Here's a novel approach to the conflict: what if you sat eight passionate, opinionated, defiant mental health advocates down around a table and shared a meal together?

I was honored to be one if those advocates. Did we reach a consensus about the Murphy bill? No (spoiler alert: I'm a supporter). But did we hear each other's stories and come to respect each other as honest, sincere, thoughtful people who want positive change? Speaking for myself, I think we did.  Too often when things become political, we lose sight of the personal.  I would challenge my fellow advocates on all sides of the assisted outpatient treatment (AOT) debate to listen--really listen--to each other's stories. We all might learn something.

I left our meeting feeling uplifted, enlightened, and best of all, hopeful. I hope that Representative Barber and Representative Murphy can have the same kind of candid, heartfelt, personal conversations that I was honored to share with my new friends. Our hope that things will be better depends on our leaders' ability to set partisan politics aside, and to make difficult decisions that can save lives while preserving rights.  I'm reminded of the words of Robert Frost:

  • But yield who will to their separation,
    My object in living is to unite:
    My avocation and my vocation,
    As my two eyes make one in sight.
    Only when love and need are one,
    And the work is play for mortal stakes,
    Is the deed ever really done, 
    For heaven and the future's sakes.

That's what the Defiant 8, who dared to come together and break bread, are fighting for.

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lizaLiza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" is now available in bookstores.

Youth advocacy take on assisted outpatient treatment

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August 23rd, 3:30am, Eugene, Oregon. As our rickety cab pulled away from my home, I was contemplating what this opportunity was going to look like. What was it going to feel like? Were we really going be able to change anything? Sometimes our thoughts are so loud that they slice into reality like a nail into a badly worn tire. BAM! Just then, my racing thoughts were interrupted by a flat tire. Did I displease the gods of advocacy? Or was this a foreshadowing of the very nature that this trip would take? Moments after, our cabby notified a tired staticky sounding dispatcher of our self-identified crisis. In the world of cab driving, flat tires on the way to airports should rank amongst the most serious of situations. But as that staticky voice came back with a six-word response of “We will try to send someone,” I thought to myself, “Try?” It was very clear that this was truly a crisis only I could fully appreciate.

“Assisted outpatient treatment.” The bureaucratic term which would remove some decision-making abilities from patients deemed “unfit” to have a voice of choice was the primary subject matter that would bring me 2,038 miles away from my custom made Google Glass charger. The conversation itself invokes more debate than any sensible mental health subject I’ve ever come across. As a former employee of Mind, Freedom, International, an organization known for it’s extreme views, that’s no small feat.

“So, what’s your opinion?” residential juggernaut Bob Lieberman, asked just a few days before the flat tire and subsequent trip. The truth is, my limited brain won’t even allow me to see past some of the foundational flaws in the system. I couldn’t give him a clear answer. One of the implications with assisted outpatient treatment for young adults in transition would be taking away the newly awarded power of choice. According to a data point released in 2006, it was clear that young adults flee the mental health system as soon as legally possible (2006 Data Point - ask Damien). The same study demonstrated these very young adults come back into the system at the age of 25-28 in the form of life-long health issues, long-term psychiatric hospitalization and in some cases, the morgue. If these new powers were granted to judges, it is certain that these young people will be ordered back to the traditional mental health system that doesn’t understand how to serve the cultural needs of young adults.

For young people who have become “system-weary” by means of overmedication, lack of appropriate therapies, or any of the other countless culturally unaware violations made by the common back of the phonebook therapist or psychiatrist, there is a reason that they are so far away from the help they so desperately need. If you think I’m painting an unfair picture, seek your local Youth M.O.V.E., Active Minds, or NAMI youth groups for the unabridged version. I assure you that these thoughts are scaled to size.

August 24th, 6:30pm, Washington D.C. As I walked into one of the big name hotel lobbies, I noticed a message (or maybe a warning) appear on my Google Glass display from Scott Bryan-Comstock that read “Be there in a few minutes. No talking about outpatient treatment tonight.” It wasn’t a warning; just a reminder that the eight advocates were coming together tonight because of the heart, not because of the politics. That was a reality that quickly became apparent.

The next morning, each of the advocates had the opportunity to give their perspective on assisted outpatient treatment through the lens of their personal experiences. Anecdotal story telling has recently been frowned upon as a method of educating stakeholders. In the advocacy world of 2014, data and best practices take center stage. This wasn’t center stage. It wasn’t stage left with Representative Murphy (PA) or stage right with Representative Barber (AZ). It was rehearsal. I had my chance to talk about the need for academic reform for mental health professionals. Family members had a chance to talk about their lived experience. Science and data advocates gave the framework of why they studied and not what they studied. This was a powerful first step, in a journey to better outcomes.

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martinMartin Rafferty is the founder and executive director for a state-wide chapter ofYouth M.O.V.E. National called Youth M.O.V.E. Oregon. Martin was diagnosed with bipolar II at 23 and later with PTSD but does not let diagnosis define who he is. Martin is the winner of multiple advocacy awards in the field of mental health and the author of curricula used by state leaders in Oregon to train peer support specialists. As an experienced public speaker, Martin has trained nationally since 2009. He is the primary author of the Youth Mental Health Bill of Rights and the director of an award winning documentary video called Project Invoke.

Martin is currently the co-chair of the Oregon’s Children’s Mental Health Advisory Committee. He has been on the Youth Advisory Board of the website reachout since 2008 and also served for 3 years on the board for CAFETY. He is the winner of the Oregon 2010 Mental Health Award of Excellence, the 2010 “Ma” Curtis Award from the Oregon Coalition on Housing and Homelessness for his advocacy for homeless and runaway youth, and the 2013 Advocate of the Year award presented by the Oregon Council of Child and Adolescent Psychiatry. During the 2013 FFCMH conference in Washington D.C. Martin also accepted on behalf of his organization the 2013 Rock Star award for Chapter of the Year.

Anosognosia: Curing the disease of not knowing about effective interventions for, and prevention of, serious mental illnesses

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I am sitting in the Capital Hyatt Regency, with a bottle of wine for people I don’t know. I’ve just spent $1,500 to meet some people on a quest to prevent, reduce and even heal serious mental illnesses that many believe is Quixotic. Folks seem to wander into the lobby bar, looking a bit like the motley crew I am to meet rather than standard issue Washington suits. One spiky-blonde dude is wearing a Google Glass, decidedly NOT DC standard issue, along with a very straight-arrow guy. The women are bubbly and warm. All these folks must be my people.

Our convener host, Scott, appears. He’s a cross between an evangelical pastor and boy-scout leader, who runs the Children’s Mental Health Network. The evening is fun and interesting. We learn the RULES for the next day. We have about 10-15 each to speak from the heart in a fishbowl arrangement, while the powers-that-be from the Congressional Office look on while we emote. It’s an enjoyable evening of interesting people.

It’s the next morning. I am lost trying to find my way walking to the meeting place, but find it. Stories of crisis, drama, challenge, despair, resilience and uncertainty move me. Our straight-arrow friend tells an equally compelling story of having to draft Kendra’s Law, leading up to the idea of Assisted Outpatient Treatment (AOT).  I am sure the legislative aids think they have landed in the middle of an alien EST group.

My story is both as a child survivor of craziness and that of a clinician-scientist who dares to speak heresy: Mental, emotional, and behavioral disorders—including very serious ones are likely preventable. I get the notion of mandated treatment. My brother and I had to commit our parents, not that it worked out so well. Why? The court-ordered treatments, themselves, were inane at best and iatrogenic at worst. I could not save my father from cancer that grew in him from toxic addictions. From my growing skills in graduate school, I was able to cobble together some contingency management protocols to give my mother more than a decade of life.

I don’t have anosognosia about the need for court-ordered treatment, nor did anyone in the room. Now outside the room, I fear that there is a scientific and spiritual anosognosia, amongst the beltway denizens about the prevention of and/or recovery from mental illnesses, including serious ones like schizophrenia and bipolar.

In 1840s, Ignaz Semmelweis told the Viennese medical society that childbed fever mortality could be prevented by hand washing. The Viennese medical society promptly developed a serious case of anosognosia about the very possibility, since God had decreed that women should suffer in childbirth—as a consequence of eating the Biblical apple. Thus was the fixed idea of the era. Semmelweis was declared mad, and he eventually died as a result of their court ordered treatment. Let us not be guilty of anosognosia of prevention, early intervention and recovery from major mental illnesses.

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enbryDennis D. Embry, Ph.D., is a prominent prevention scientist in the United States and Canada, trained as clinician  and developmental and child psychologist. He is president/senior scientist at PAXIS Institute in Tucson and co-investigator at Johns Hopkins University and the Manitoba Centre for Health Policy. His work and that of colleagues is cited in 2009 the Institute of Medicine Report on The Prevention of Mental, Emotional, and Behavioral Disorders Among Young People. Clinically his work has focused on children and adults with serious mental illnesses. He was responsible for drafting of the letter signed by  23 scientists, who collectively represent scores of randomized prevention trials of mental illnesses published in leading scientific journals. In March 2014, his work and the work of several signatories was featured in a Prime-TV special on the Canadian Broadcast Corporation on the prevention of mental illnesses among children—which have become epidemic in North America.

Can nurturing environments “Turn On” protective genes against mental illness in children?

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Yes, indeed, through a process called epigenetics. Chances are you’ve never heard of changes in gene expression since most people were taught your genes are for life.  Well, we do have our genes for life—but many of our genes change their expression based on our social environments.  Many of the genes that change the most involve our brains.

Consider the genes regulating Brain-Derived Neurotrophic Factor, or BDNF for short. Feeling depressed? Many medications change your BDNF to feel less depressed?  Having trouble learning new things? You might not be producing enough BDNF, as a result of not enough sleep or physical activity.  I like to think of BDNF as “brain fertilizer” as it makes the neurons extend their dendrites, a bit like adding roots. BDNF increases neural connections.  You can get some more info at the National Institutes of Health, and another link has a good overview about what BDNF does for human behavior,.

What many families or policy makers don’t know is that some genes, like the 16 gene variations of BDNF, “listen” to the social and biological environment. If the gene variation “hears”, for example, lots of threats coming from other humans or risk to future, the gene may express itself differently. If the gene “hears” reinforcement and support from other humans, it may express itself differently—preferentially calculating a longer life.

These expressions have been selected by evolution and have reproductive advantage in different circumstances.  Remember, since the invention of stone tools, humans became the worst predator of other humans, and other humans became the major source of safety. That is a unique evolutionary paradox of humans.

Much of my preventions science has been about early protective strategies during the early childhood period from ages 3-8 in the U.S, and other countries, with partners as diverse as Sesame Street, the Pentagon and U.S. Canadian, New Zealand and now European governmental agencies grades. Since 1999, I’ve worked on something called PAX Good Behavior Game, which has powerful protective effects on children’s futures 10-20 years later.  For example, one or two years of exposure to PAX Good Behavior Game could have these long-term benefits for each cohort of nearly 4 million first graders each year in America, based on the prior studies:

  • 350,306 fewer young people will need any form of special education services
  • 226,668 more boys will likely graduate from high school
  • 272,002 more boys will likely attend college
  • 361,444 more girls will likely graduate from high school
  • 282,440 more girls will likely attend college
  • 39,564 fewer young people will commit and be convicted of serious violent crimes
  • 391,518 fewer young people will develop serious drug addictions
  • 267,881 fewer young people will become regular smokers
  • 144,244 fewer young people will develop serious alcohol addictions
  • 197,510 fewer young women will contemplate suicide
  • 267,881 fewer young men will attempt suicide

In the short-term, the same strategy averts or reduces bullying, ADHD, and conduct problems, as well as increases reading test scores and other important outcomes. These are extraordinary changes from a simple program that teaches self-regulation to children, reduces exposure to peer aggression, rewards peer cooperation, and helps children experience a more positive daily life every day in school.  All of this happens as a daily routine, not as a curriculum or series of lessons.

With all these long-term behavior changes, my colleagues and I at Johns Hopkins (where we are involved in ongoing studies of the PAX Good Behavior Game) have long thought that changes MUST be happening in the expression of genes like those found in BDNF.  It turns out to be true.

A bright young scientist at Hopkins lead such a study to measure such changes, using fancy tools by comparing children who were randomly assigned to control condition first-grade classrooms, to first-grade classrooms with what is now the PAX Good Behavior Game, or to first-grade classrooms where every parent could access parenting supports. Dr. Rashelle Musci and others extracted single-nucleotide polymorphisms (SNPs) from the BDNF gene samples from all three groups of children, just after they graduated from high school. About 14 years after the young people had experienced the experimental conditions.

While the preventive interventions tested in the classrooms or among the families were not rocket science, the gene analyses are.  You can read more about the technical details from the study [1], which I am happy to share. What happened? Well about half of the children had a particular group of variants of BDNF genes, associated with the disposition toward aggression and impulsivity. These are the same gene clusters that predict longer-term problems of mental, emotional, and behavioral disorders. That group of genetically and socially at-risk children were most profoundly affected by the PAX Good Behavior Game, and secondarily by the parenting supports offered to the families.

From all this, we now infer that the BDNF gene expression was changed by the environment.  Recently, new methods can allow us to see the traces of how the gene expression was changed, because there detectable markers on the genes to reveal the traces of the changes. In our newer studies in Manitoba and the U.S., we plan to set in motion instrumentation to measure these changes. What is remarkable is that a nurturing environment, vis à vis a medication, made this difference.  What is further remarkable is that either nurturing environment left a permanent change on both behavioral traits, which medications do not. To explain the study visually, I have created an illustration that you can review.

What does all this mean for the children’s mental-health network and for policy? Quite a lot! First, it’s a very clear indication that at least some serious mental, emotional, and behavioral disorders are preventable, and the gene expression change nails the point.  That’s great news for families.  Second, it means that we really, really need to pay attention to chapter 13 of the 2009 Institute of Medicine Report on the Prevention of Mental, Emotional and Behavioral Disorders [2]. That chapter details significant actions that could rival the mobilization to prevent polio.

As it turns out, we have better science to today to prevent mental, emotional, and behavioral disorders than we did with Jonas Salk’s study showing positive expression of antibodies against polio.  We have far more children and adults proportionally die or will be harmed from mental illness than ever happened with polio.

Let us act for our children’s futures, all our children’s futures.

By Dennis D. Embry, Ph.D.,

Senior Scientist, PAXIS Institute, Tucson

Co-Investigator, Johns Hopkins Center for Prevention and Early Intervention

Co-Investigator, Manitoba Centre for Health Policy

 

References
1. Musci RJ, Bradshaw CP, Maher B, Uhl GR, Kellam SG, Ialongo NS: Reducing aggression and impulsivity through school-based prevention programs: A gene by intervention interactionPrevention Science 2013: No Pagination Specified.

2. O'Connell ME, Boat T, Warner KE (eds.): Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities. Washington, DC: Institute of Medicine; National Research Council; 2009.

embryDennis D. Embry, Ph.D., is a prominent prevention scientist in the United States and Canada, trained as clinician  and developmental and child psychologist. He is president/senior scientist at PAXIS Institute in Tucson and co-investigator at Johns Hopkins University and the Manitoba Centre for Health Policy. His work and that of colleagues is cited in 2009 the Institute of Medicine Report on The Prevention of Mental, Emotional, and Behavioral Disorders Among Young People. Clinically his work has focused on children and adults with serious mental illnesses. He was responsible for drafting of the letter signed by  23 scientists, who collectively represent scores of randomized prevention trials of mental illnesses published in leading scientific journals. In March 2014, his work and the work of several signatories was featured in a Prime-TV special on the Canadian Broadcast Corporation on the prevention of mental illnesses among children—which have become epidemic in North America.

Eight advocates defy critics and come together for honest dialogue about Assisted Outpatient Treatment

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Members of Congress and their staff invited to observe...
When: August 25, 2014
Where: Washington, DC 

There have been plenty of naysayers who have made their feelings known about our plan to hold a dialogue with advocates across the spectrum of opinion on the question of Assisted Outpatient Treatment. Assisted Outpatient Treatment is one of the lightning rod issues in HR 3717 Helping Families in Mental Health Crisis Act that has drawn heated debate among members of Congress and the mental health advocacy community. Not only are we holding a dialogue, we are sending invitations to members of the U.S. House of Representatives Energy and Commerce Committee and their staff to observe our dialogue.

Here is a sampling of some of the fear-based comments that have come from Network readers:

  • "You're consorting with the enemy," "How could you give them more ammunition to make their case?" "What a waste of time." "This will go nowhere." "This is not the way we do things." "How dare you!" 

My answer to the last statement, which sums up the answer to all the others, is, "How dare we not?" 

Why are we holding this dialogue? 
Faithful readers know that the Children's Mental Health Network has been actively fostering dialogue among those with differing opinions on Assisted Outpatient Treatment over the past several months. Assisted Outpatient Treatment is one of the lightning rod issues in HR 3717 Helping Families in Mental Health Crisis Act that has drawn heated debate among members of Congress and the mental health advocacy community. The goal of the CMHNetwork has been to model a rational approach to dialogue on this issue that honors individual experience, but leaves room for finding common ground. To say "we are not going to budge on our stance" does no one any good. Drawing a line in the sand serves only to perpetuate the muddy landscape that is the mental health delivery system, leaving families without answers or direction to help guide them through the turbulent waters of having a child or young adult with serious mental health challenges.

A glimmer of hope 
We were excited when we read a news story in June that a bipartisan group of House lawmakers were looking for compromise mental health legislation. Rep. Tim Murphy (R-Pa.) expressed hope that common ground could be found on his Helping Families in Mental Health Crisis Act, which he introduced late last year. And Rep. Ron Barber (D-Ariz.) expressed similar optimism for his bill, which was introduced six months after Murphy’s. According to news reports, the negotiations would begin during the July recess.

The glimmer becomes a faint ember
It is now close to the end of August, and we haven’t heard a peep about progress with this bipartisan effort. Making matters worse, when Congress reconvenes, the opportunity to get anything meaningful accomplished is doubtful, with as little as a two-week window according to some of our sources in DC.

Time to take charge of the pace 
It seems we have two options. We can criticize Congress for not doing their job and wring our hands. Or, we can take charge of the pace of discussion and model effective collaborative problem-solving. Doing the latter has multiple benefits. First, it gets advocacy leaders with differing perspectives in the same room listening to each other, and second, it signals congressional staff that the populace, the voters, the constituents, (whatever noun suits your fancy) are formulating a strategy to move forward. Instead of the current soundbites of "This is what Murphy is saying," or "This is what Barber is saying," maybe, just maybe we can move forward the conversation to "This is what the people are saying, and it's complicated, and controversial, but the people are determined to figure it out."

Enough with the perpetual arm wrestling, folks.

Big time props to the brave eight who have made a commitment to stick their necks out, take a page out of the humility handbook, and participate. Take a look at the list below (in alphabetical order) and if you have the time, send them a note of encouragement for putting themselves on the line:

Our strategy for conducting a dialogue among advocates on Assisted Outpatient Treatment

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The Advocates Dialogue on Assisted Outpatient Treatment (AOT) is being conducted to achieve two primary objectives: 

  • For advocates 
    Bring together advocates on both sides of the AOT discussion to listen to differing perspectives and share ideas for how to move the national conversation about AOT forward. Key to this effort is a focus on strategies that facilitate collaboration, civility, and improvement of services and supports for individuals with mental health challenges, their families and the communities in which they live. 
  • For congressional representatives and staff 
    Provide an opportunity for congressional representatives and staff to observe the dialogue and gain deeper insight into the perspectives and the different advocacy positions. Since legislative staff are critical to the writing of language in any proposed bill that addresses this topic, it will be beneficial for them to have a broader understanding of perspective and utilize that broadened perspective in working on compromise language.

    We will capture key points and suggestions for moving the dialogue forward in the discussion and will prepare a written report for dissemination to members of the House Committee on Energy and Commerce for their consideration as they work toward compromise language to pass meaningful mental health legislation.

Note: For background context on the creation of the Advocates Dialogue on Assisted Outpatient Treatment, please click here

Overall purpose of the dialogue 
The goal for this meeting is not to pit "for" and "against" head to head. Quite the opposite. The purpose of the discussion is to provide an opportunity for the sharing of personal experience around the challenge of addressing this issue and the emotion it brings – precisely why this discussion will not focus on research, data or other props to support a position one way or the other. Everyone in the discussion is quite astute and could argue a position either for or against with plenty of supported data to back them up. 

What happens the night before the dialogue?
The dialogue experience will begin with dinner on Sunday, August 24th. The only rule for this dinner is that there will be no discussion of the dialogue to take place the following day. Our hope is that by breaking bread together we will be able to get a richer sense of the gifts each of us bring to the conversation to take place on the following day. 

How will the dialogue be structured? 

  • Scott Bryant-Comstock will facilitate the discussion. Discussants will be seated in a circle in the center of the room. Congressional members and staff will be invited to observe the discussion. 
    Note: There will be plenty of opportunity in the coming months to widen the circle of discussants. We consider this dialogue a beginning of many dialogues. 
  • No charts, graphs, research studies, or speeches allowed! There have been presentations of research on both sides of the issue in many different forums. And it seems to us that neither side is listening to the other, so we are gonna leave the PowerPoints behind!
  • At the end of the dialogue, observers are welcome to interact with discussants in an informal "after the meeting" environment. We are not asking for any commitment or public statement from any of the observers. 
  • The goal of the discussion is not to “solve” anything – just to broaden understanding of the unique perspective each brings to the topic. Quite bluntly, our goal in this meeting is not to convince members in Congress of what the “right decision” is, but more to encourage continued and more frequent dialogue between proponents of both bills. Knowledge is power. Ignorance is bliss, which is always short lived. 

Why hold an invitation only event? 
With the well-documented rancor and ill will regarding this topic expressed publically over the past year, we knew we needed to create an environment of safety for constructive, honest dialogue. As well, a room full of supporters and detractors tends to encourage the delivery of platform speeches instead of honest, personal reflection, which is what we are looking for in this dialogue.

We are purposely inviting only members of Congress and their staff to observe. There will be no press or additional advocacy group representation during the dialogue. Once the dialogue is complete, doors will be opened, and anyone is welcome to talk with anyone. Observers can choose to either engage or not once the official dialogue is over.

Moving forward
Members of Congress rely on well-informed information from the citizenry. Our observation is that over the past year, the numerous expert panels, research findings, etc. have only polarized positions. We have not seen evidence of true collaboration on the tough issues. That has to change, and we in the advocacy community have to lead that change. This dialogue is only the first step. There will be much to follow.  

scott

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network
 

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