Let's get more members of Congress involved in the dialogue on meaningful mental health reform

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Representative Paul Tonko (D-NY) wrote an opinion letter on the topic of mental health reform for The Hill website earlier this week. Members of Congress, just like the American public they represent, have widely divergent views on how to approach meaningful mental health reform. We need more congressional representatives to share their views and engage with each other in constructive dialogue about how to address what most would agree is a broken mental health service delivery system. 

Network readers are well-versed in our reporting of the efforts of Representative Tim Murphy (R-PA) in his campaign for mental health reform through the Helping all Families in Mental Health Crisis Act. His tireless efforts spurred us on to engage in respectful dialogue with advocates who have widely divergent views on how to approach meaningful mental health reform. The Children's Mental Health Network will continue to press for mental health advocates to come together in dialogue. We are hopeful that members of Congress who have differing perspectives on how to approach mental health reform will do the same.

I encourage you to read Representative Tonko's post (included below) and then ask your Representative to write an opinion article of their own, sharing their thoughts on the challenge of meaningful mental health reform. We need more members of Congress actively engaged in the dialogue.

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scott

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

 

  • Moving forward on mental health - by Representative Paul Tonko (D-NY), January 26, 2015, The Hill
    I first met Timothy O’ Clair at a little league game in 2001. Timothy was a bright and energetic youngster with the whole world ahead of him. Unfortunately, Timothy also suffered from a debilitating mental illness. When Timothy’s insurance would no longer cover his treatment, his parents were forced to disown him in order to get treatment. Unable to receive the appropriate care, at the age of 12, Timothy tragically completed suicide. Timothy’s struggle to get the care he needed is what first led me down the path of working to improve the mental health system in America.

    Fourteen years later, I am ashamed to admit that there are still far too many stories like Timothy’s across our country. Whether these events make the headlines, or are one of the quiet tragedies that affect countless individuals and families, no one can credibly examine the status quo in mental health and say that it’s working. I witness this struggle daily – through the bipolar young woman who is wrestling with her demons while trying to hold down a steady job – through the family who is agonizing over their schizophrenic son who is about to turn 18 – and through the many individuals who only accessed mental health treatment for the first time after they were locked up in jail.

    Despite the pain that I hear coming from individuals and families in the throes of mental illness, I have reason for optimism. In recent years, there has been a robust debate in Congress among passionate and committed members from both sides of the aisle who want to better the lives of those living with mental illness. However, this debate has often been constrained by a narrow focus on crisis points in the mental health system. Yes, we absolutely have to do a much better job at handling mental health crises. Everyone agrees that emergency rooms and jails are not the proper venue to handle these events. Whether it’s through mental health first aid training, the creation of real-time hospital bed registries, or increased investments in crisis stabilization services, a multitude of potential options exist to address these acute issues.

    More fundamentally though, we have to address the reality that we utterly fail at addressing mental illness in America before it reaches a crisis point. Even though we know that mental illness can be more effectively managed when addressed early, the delay between the first symptoms of mental illness and the first treatment contact can average almost a decade. To reduce actual human suffering and to make more cost-effective investments, we must do everything possible to narrow this gap. This means supporting mental health programs in our schools and colleges where the first signs of mental illness often manifest. This means embracing policies that continue the trend of integrating behavioral health with physical health, so that during your annual physical every person is given a checkup from the neck-up. This means supporting a public health approach to mental illness that tries to address nagging issues like stigma and minority health disparities. And while I agree that we can’t simply throw more money unconditionally at a failing system, we have to acknowledge that the current dysfunction stems in part from decades of broken promises and a chronic underinvestment in community-based mental health services. These are problems that won’t be solved by a politics of austerity cloaked in the guise of reform.

    I won’t pretend that the answers to fixing our mental health system are easy or uncontentious – because they are not. I do know, however, that a sustainable solution for our mental health system will only emerge when frank discussion and tough choices allow us to find a lasting and hard-earned consensus among all parties. Forging a path ahead will require all involved to critically engage with the reality that while the status quo is unsustainable, the solution is not to tear down, but to build up. I look forward to doing the necessary hard work with my colleagues in the 114th Congress to build this better tomorrow – in Timothy’s memory and for all the individuals and families struggling with mental health battles in America.

    Tonko has represented congressional districts in New York's Capital District since 2009.

Assisted Outpatient Treatment community dialogue confirmed

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At the end of November, the Children's Mental Health Network convened a group of mental health advocates in the conference room of Minority Whip Steny Hoyer for the third of four dialogues on Assisted Outpatient Treatment (AOT). You can read about that meeting here. One of the action items that emerged from the November dialogue was the idea of visiting a community that utilizes the AOT process in a way that would be supported by proponents of the Helping Families in Mental Health Crisis Act.

Well, good news Network faithful - plans for our visit to a community that utilizes the Assisted Outpatient Treatment (AOT) hearing process are in the final stages, and we could not be more excited.

The AOT issue is one component of the Helping Families in Mental Health Crisis Act that has been a consistent lightning rod for controversy. Championed by Representative Tim Murphy (R, PA-18), the proposed bill has dominated the conversation in mental health circles over the past year, leading to divisive splits among advocates about what should be included in any comprehensive mental health reform bill. The bill (HR 3717) didn't go anywhere in the last Congress, but support is growing with members of Congress, and Representative Murphy is continuing the aggressive pace from last year for garnering support among his congressional colleagues.

Why is the Children's Mental Health Network organizing a community dialogue on AOT?
Quite simply, the judicial system in in the community we are going to visit utilizes AOT in a way that represents an example of the type of approach supported by proponents of The Helping Families in Mental Health Crisis Act. If we are going to be constructive in our approach to this bill, we need to touch, see and feel one of the more controversial components.

Focusing on this particular community does not, and should not, imply that they are “perfect” in their approach to meeting the needs of individuals with serious mental illness and their families. But they are trying to make it work, and at the end of the day, warts and all, that is what we need to see. Only then, can advocates who come to the AOT dialogue with polar opposite views, have a constructive dialogue about AOT from a shared experience.

Who will participate in the dialogue?
Thanks to all of you who wrote in requesting to participate in the onsite dialogue. Please know that there will plenty of opportunities for involvement in CMHNetwork dialogues, but for this one, which is the fourth and final dialogue on AOT, we are purposely keeping the invitations focused on those who have participated in at least one of the three previous dialogues. We are doing this for continuity, and frankly to keep our numbers small for this highly personal and intimate experience. 

Where is the visit taking place?
We will not share publicly the location of the community we are visiting until after we complete the visit. This is an emotionally charged topic, and just as dialogue participants at the extremes of opinion have come together in mutual respect, we want to ensure that the same level of respect extends to those we will be meeting with. We want to experience this on-site visit with as little extraneous chatter as possible.

Structure of the visit
You can likely imagine the logistical challenges for a visit such as this. Here is a rough idea of how we will spend our time.

  • Morning session
    We will spend the morning observing the cases that come before the judge. After the morning session, we will conduct a  lunch meeting where we will get the opportunity to meet with judicial staff, the mental health liaison and other providers involved in the particular cases we will be observing. For obvious reasons, we will not be meeting with individuals involved in the hearings or their family members.
  • Afternoon / evening session
    Our goal is to meet with extended service and support options typically identified an an AOT treatment plan. I will be working with mental health liaisons from the community to identify representatives from family and young adult support organizations, peer-led service providers and others who comprise the extended elements identified in treatment plans utilized in the AOT process. It is most important that we understand how this community looks at the connection between highly intensive and less intensive services and supports. Also, a high priority for me is to identify a young adult and family members who have been through the process before. Fingers crossed on this one!

Confidentiality and consent
Confidentiality and consent are our highest priority for this visit. We can expect at least a four-week time span between our request (coming this week) and the actual visit. All individuals and family members involved in the court process need to give their permission in order for us to sit in, so this visit will take some time and ongoing communication to get set up. But it will be worth the wait! 

Benefits and challenges for dialogue participants
Let's make no mistake folks - for dialogue participants who choose to participate, this visit will likely make them uncomfortable, regardless of their position on AOT. Dialogue participants to date represent a number of national advocacy organizations - some with clearly defined positions on AOT and others who have members with widely divergent opinions on AOT. It is highly likely (based on past dialogues) that participants will hear a fair amount of constituent questioning of motive for participating.

  • For dialogue participants who are ardent supporters of AOT, they will celebrate the opportunity to hear from community partners who embrace a process that ensures treatment for the small percentage of individuals with mental illness who don't have the awareness to make that decision for themselves.
  • For dialogue participants who are ardent opponents of AOT,  they will likely celebrate the opportunity to hear from community partners who embrace the benefits of peer-led, supportive services that focus on individual choice for the overall population of individuals with severe mental illness.
  • For or against, those who participate in this dialogue will see and hear from one community that is trying to make both ends of this continuum work together.

Bottom line - participating in this visit is not for the faint of heart 
I hope this gives you insight into the strategy in play as well as the risk I am asking these advocates to take. But let's face it - if we are not willing to risk public critique, then we might as well stay home and twiddle our thumbs, and let decisions about mental health reform be made without our input. It is more than past the time that we hitch up our britches and move this dialogue forward.

A reminder of why the dialogue series began with AOT
Even though AOT is only a small part of the overall Helping Families in Mental Health Crisis Act, it is the component most often cited and linked to other elements of the bill, specifically the reorganization of SAMHSA and redirection of federal dollars - i.e., "If HR 3717 was in place, this tragedy would not have happened, we need to shift focus of federal investment."

AOT raises fervent questions on both sides, and as we have learned in our three dialogues to date, is misunderstood, misconstrued, highly variable in approach, and more often than not, discussed out of context and in isolation of the broader continuum of services and supports necessary to help individuals with serious mental illness integrate into the community. We have talked a lot about AOT. It is time to do some listening where AOT has the most impact - in communities where families, individuals and providers deal with the issue, not in the abstract, but up close and personal. And that is what we need to understand if we are to guide the development of meaningful and comprehensive mental health reform in America.

Stay tuned Network faithful!

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scott

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

Four strategies to future proof your child and family serving organization

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Are you feeling a constant sense of uncertainty related to on-going disruptive change and wondering how your organization is going to successfully navigate the turbulence? Do you wish you were further ahead or feel like you aren’t tapping and leveraging true potential?  If you answered yes to either of these questions, you are not alone.

Although we don’t hold a crystal ball that allows us to gaze into the future, thanks to recent advances in science we do know  some things that can be done to better prepare for the times ahead. If you are a  leader in children’s mental health, child welfare, or juvenile justice and want to be an adaptive, flexible, resilient, high performing organization that not only stays afloat, but rides the waves of change with grace, these four strategies may be useful for you. 

1. Maximize Engagement
One of the biggest challenges system of care leaders face today is how to effectively manage the human resistance to change. This resistance impacts an organization's ability to innovate and adapt to a constantly changing environment. According to the most recent 2013 Gallup Poll, “70% of US workers are not engaged or actively disengaged in the workplace.” Unfortunately, those statistics have been consistent over the last decade and further studies show this to be the global trend as well.

Engagement lies at the heart of commitment and is the foundation for any successful change endeavor. Lack of engagement has a profound impact on a child and family serving organization’s ability to innovate, be creative, and optimize performance. Disengagement is the No.1 driving force behind why change efforts fail or simply underperform, and the cost of disengagement to human service systems can be staggering. Recent findings in the field of contemporary neuroscience reveal that many leaders do not understand what drives human behavior in the workplace. Because of this leaders often unintentionally induce what is referred to as a threat state in the brains of their employees. This leads to the opposite of what system of care leaders say they want- employees who are attracted to organizational goals, fascinated by the work, and committed to achieving positive child and family outcomes. An effective solution is to understand and apply the hard science that underlies engagement to better manage the deeply social context of the workplace. This goes below the surface to addresses the underlying challenges of engagement so that system of care leaders can effectively create a workplace where individuals and teams are more collaborative, innovative, co-creative, productive, and resilient in the face of change and growth. 

2. Build Stress Resilience
The Institute of HeartMath® has defined stress resilience as “the capacity to prepare for, recover from and adapt in the face of stress, challenge or adversity.” Child and family serving organizations with low levels of stress resilience are at risk for becoming obsolete. Human service workers who have more resilience are better prepared for and often avoid many of the difficult situations and challenges that need bouncing back from. The greater the resilience capacity, the greater an employee’s ability to maintain composure in the face of adversity and on-going unsettling change. In other words, this is what allows people to stay in charge of their reactions and perceive things with clarity. Employees who have the opportunity to learn how to build and sustain stress resilience are more intelligent about how they direct and use their energy. This prevents stress buildup. Individuals and teams who have a better ability to self-regulate and be in charge of their emotions are more adaptive and flexible. This is fundamental to high levels of performance. 

Stress is the #1 "proxy killer" in the world today. It's no longer a matter of just simply managing stress. The science is clear - if you are a system of care leader who wants sustainable improvements in individual and team effectiveness, increases in productivity and higher levels of overall well-being regardless of the circumstance or adverse situation, you must put your attention on building stress resilience within your organization. To ignore this is negligent and unfortunately sets your organization up for a future downfall. 

3. Optimize Performance
Performance starts in the brain and is impacted by both internal and external factors in the surrounding environment.  If these factors are not balanced and managed properly, it can be detrimental to the health and performance of an individual, team, and entire organization. In order to optimize performance, system of care leaders must first be aware of and have an acute understanding of the elements necessary to make a healthy environment for the brain to operate at its peak.  

To improve communication, creativity, and collaborative teamwork, breakthroughs in modern neuroscience highlight the importance of working with vs. against the physiology of the brain.  Part of doing this involves strategically developing regions of the brain that support the outcomes organizations want to achieve. To optimize performance in the workplace, not only do employees need the social landscape of the workplace to be rewarding, they need access to brain strengthening activities that grow the areas of the brain associated with self-regulation, higher order thinking, and overall cognitive functioning. Employees are paid to think. The least organizations can do is create the space and support for doing so. System of care leaders who understand how our brains work at their best are better prepared to create a brain-friendly workplace atmosphere that helps others show up at their best. Learning how to leverage knowledge about the human brain as it relates to organizational performance gives system of care leaders practical insight into many important aspects of work, such as how to keep cool under pressure, why change is painful, and what helps people learn. 

4. Re-align Culture
Shifting culture requires changing long-entrenched habits. Most people think of habits as everyday behaviors that you can see. However, in addition to behaviors, habits also include thinking, emotional responses, and decisions, which are all hardwired in the brain at a neurobiological level. Neuroscientific discoveries highlight that many of our conventional leadership approaches to changing these habits may be keeping us stuck in old habitual patterns. Hence the painful barriers associated with attempts to change culture within a system of care or any human system. Leaders who understand how neuroplasticity, our brains ability to rewire itself with experience, and the power of focus can be leveraged to change culture have moved away from the old outdated believe system that put limits on the human potential for change, learning, and growth. They also understand that to shift the culture of an entire organization, there needs to be an understanding that everyone is part of the "Organizational Brain" and that the whole is greater than the sum of its parts.   

Re-aligning culture involves the interruption of deep-rooted belief systems that lie below conscious awareness. Many of our traditional change management practices in systems of care don’t disrupt these patterns. On the contrary, they further engrain them, creating a sense that changing ways of thinking and being in a child and family serving system is virtually impossible to do or it simply takes too long. This is an antiquated view of change and does not take into account the latest insights from science that help us better understand what it really takes to move past status quo. 

Habit has a way of taking over the wheel more often than we realize. This state of mindlessness fosters stagnation and sets human service systems up for rigidity and chaos- two places you don’t want to be. 

What do you need to do to ensure your child and family serving organization is set up for success, both today and in the future?

To learn more about how to future proof your organization, visit www.zeropointleadership.com. Also, don’t miss our upcoming online neuroLeader MasterClass, where we teach change leaders how to use the neuroscience of leadership and change management to optimize performance, accelerate the pace of change, and shift culture. Class begins January 26thClick here to learn more.

  • All Network faithful qualify for a 50% discount. Just be sure to put in the discount code - CMHN-Holiday.  

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About Laurie Ellington
laurie
Laurie Ellington, MA, LPC, PCC, RCC, HMCT, brings 20 years of experience in the fields of coaching, training, consulting, and behavioral medicine- helping individuals, family systems, state and local government, and non-profit organizations change the status quo.  Combining research from contemporary neuroscience, modern physics, positive psychology, systems thinking, and intelligent energy management, Laurie helps leaders use science to dramatically improve performance, accelerate change, and transform culture.  

Laurie is the co-founder and Chief Executive Officer of Zero Point Leadership™ and co-Founder of neuroLeader University.  She is a Licensed Professional Counselor, ICF Professional Certified Coach, Certified Brain-Based Leadership Coach, and HeartMath Certified Trainer.  Laurie is also a faculty member with the Office of Personnel Management Center for Leadership Development, where she teaches government leaders the neuroscience of leadership and the science of leadership resilience. 

We’re Military “Brats,” not heroes, champs, little soldiers, or fledglings

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Morning Zen Guest blogger ~ Donna Musil

Can you imagine the outrage if the USO bought thousands of copies of a non-vet’s book about how it feels to be a vet, then paid him to traipse around the world singing songs about a war he never fought, while unilaterally renaming vets “Hero Volunteers” and treating vets with PTSD as if they were defective and just not “resilient” enough?

That’s what’s happening to 15 million Americans who have grown up in military families.

For as long as anyone can remember, these proud citizens have called themselves military “brats,” but recently, a small group of non-brats has been trying to “rebrand” this 200-plus- years culture into “CHAMPS,” or “Child Heroes Attached to Military Personnel.” In my opinion, with very few exceptions, those 15 million military brats are not happy with this rebranding effort.

To the non-military-connected, the word brat may have negative connotations, but to the military child, it has just the right amount of spunk necessary to make it through the next move, the next deployment, or the next sacrifice for the Military Mission. When these children leave the military, by way of graduation or their parent’s retirement, there are hundreds of brat alumni organizations, websites, blogs, and Facebook pages through which they can keep in contact with all the friends, teachers, coaches, and dreams they had to abandon over the years in the name of duty, honor, and country. It’s their one “root.” Now, Debbie and Jennifer Fink and their “Operation CHAMPS” initiative are trying to take that root away.

No one really knows where the term brat originated. British military children were called both “British Regiment Attached Travelers” and “barrack rats,” which could’ve been shortened to brats. Poets referred to military children as brats as far back as 1707. Some think it just means “a child.” Others have come up with creative acronyms like “Bold Responsible Adaptable Tolerant.” Wherever it originated, it stuck, and millions of people who grew up in military families (from America, Britain, Canada, Australia, etc.) call themselves brats. 

On November 24th, the Finks issued a statement denying attempts to “reject or denigrate the term BRATS,” but a multitude of interviews and publicity materials say otherwise. In a 2012 USO article by Joseph Lee, Debbie Fink said, “We declared our independence 236 years ago and it’s about time our Little C.H.A.M.P.S did the same.”

Why would anyone try to disenfranchise a proud culture to which they don’t even belong? The Finks claim a goal of their “public health and education initiative” is to help civilian children “understand” military children. They have managed to convince some heavy-hitters behind their efforts, from the USO to the Red Cross to First Lady Michelle Obama. The USO sent the Finks on a world-wide book tour to military base schools in Europe and Asia. Unfortunately, there are few civilian students attending those schools who need to be enlightened by the Finks. This oversight is not surprising, since neither the Finks, nor most individuals leading current military child organizations, grew up military.

Here’s how it seems to work. The Finks wrote a $10 children’s book, The Little C.H.A.M.P.S,” and sell an accompanying $399 “CHAMPKit.” Their for-profit company, Harmony Hearth, LLC, owns all the rights to the book and kit, and is trademarking “CHAMPS.” The Finks solicit donors to buy the books to “give away” through the non-profit. I can only assume the non-profit buys the books from the for-profit. We’re not talking about a couple hundred books. We’re talking thousands of books. 

The Finks say they donate the “profits” from their for-profit book sales to the non-profit. So  why didn’t they just publish the book through the non-profit? Only the Finks know, because the public can’t see their for-profit salaries or expenses. Perhaps they received advice from the book’s illustrator, Walter Blackwell, who resigned in 2008 as CEO/President of the National Veterans Business Development Corporation after a Senate inquiry. According to a 2008 New York Times article by Elizabeth Olson, “A Nonprofit for Veterans Is Faulted On Spending,” the Senate reported that the money spent on helping veterans start and expand new businesses was dwindling, while its executives spent thousands of federal dollars on “expensive dinners, luxury hotels, first-class travel and high salaries.” 

There always have been, and there always will be, individuals and organizations that try to profit from the military and military families. Some of them provide real services in return and some don’t. In my opinion – as a proud Army brat who moved twelve times across three continents, went to eleven schools in thirteen years, watched my father go to war (then die eight years later when I was in high school), and as an adult brat who has spent the last 15 years trying to raise awareness of the culture, contributions, and challenges of military brats – the Fink’s “Little C.H.A.M.P.S” initiative does not.

Some choose to believe the Finks are well-intentioned. All I know for sure is that I spoke with Debbie Fink in 2011 before she finished her book. She told me she was originally going to  entitle it, “The Little Brats,” but the Military Child Education Coalition (MCEC) told her they wouldn’t endorse any book with “brat” in the title. I explained what the word meant to our culture. I shared with her our own initiatives, including our cultural competency workshops, traveling art exhibit, and BRATS Clubs for military children attending civilian schools. I sent her a copy of the documentary, BRATS: Our Journey Home (which is owned by the non-profit, Brats

Without Borders) and she promised to send me a working draft of her book. I never received it. A year later, The Little C.H.A.M.P.S was published and the Operation CHAMPS initiative was launched offering the book and free babysitting for military families by college students. In the past week, MCEC has officially withdrawn support for the “Little CHAMPS” program.

Make no mistake – this is not just about a word. In my opinion, “rebranding” military brats to “CHAMPS” marginalizes and disenfranchises millions of Americans of all ages, races, and walks of life, in order to sell a product. Meanwhile, dozens of small groups and non-profits run by and for brats with programs and materials based on real research and actual experiences, are ignored – organizations like Brats Without Borders, the Military Brat Registry, the Military Kid Art Project, Books for Brats, the Museum of the American Military Family, Overseas Brats, the BRATpin, Operation Footlocker, Brightwell Publishing, Military Brats Online, United Children of Veterans, the American Overseas Schools Historical Society, and more. Some of these organizations have been around for three decades, quietly helping their fellow brats, young and old, while the well-intentioned USO sends interlopers like the Finks on world tours and thinks they have done something special to help military children. They haven’t. Because at the end of the day, military children still don’t have “anyone who understands them,” because they have been alienated by groups like the Finks from the only ones who do – their fellow brats.

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donnamusilDonna Musil is the Executive Director of Brats Without Borders, a 501(c)(3) tax-exempt nonprofit founded in 1999 to provide educational outreach, support, materials, and research to enrich the lives of Military “Brats” and “Third Culture Kids” of all ages. She is also the Writer-Director of BRATS: Our Journey Home, the first documentary about “growing up military,” as well as a non-practicing attorney, with an ABJ in Journalism and a JD from the University of Georgia. For more information about Brats Without Borders, see www.USAbrat.org.

For more information about Brats Without Border Projects & Programs, see www.bratsourjourneyhome.com/BWBPrograms.pdf.

What We Didn’t Say: A struggle — parenting children with mental illness — is finally shared

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Morning Zen guest blogger ~ Robin Herman

I’d seek out my friend — standing in the crush at the edges of the P-rade — the one classmate I could talk to each year at Reunions who would understand. We’d turn our backs to the line of marchers and whisper under a tree the latest updates about our young-adult kids. I’d tell him how my daughter, at the mercy of dark moods, periodically would overdose on prescription medications and how my son had suffered an unexplained breakdown at college. Some days my son couldn’t get out of bed, yet he had resisted engaging in treatment. My friend would tell me about hospitalizing his son to pry the young man away from the grip of alcoholism and underlying depression.

We’d been meeting discreetly like this for nearly a decade, since the first hints of our kids’ troubles, whispering our fears, our desperation, our sympathies, and then leaving one another with a big hug and hopes for a better year ahead.

When we’d turn our faces again to the crowd, you would hear my friend say how well his business was doing and, from me, what a grand transition I’d made from a high-profile journalism career to being a dean at one of Harvard’s graduate schools. We had great spouses, great families, great lives! Doesn’t everyone at Reunions?

I did not expect that my biggest and most painful challenge as a parent would come so late. I thought the hardest years were behind my husband and me: the toddler tantrums; the worries over childhood diseases, school progress, sexual relationships and health; the tamping down of terror as we watched our daughter and then our son drive away in the family car for the first time. 

Measured against the mental illnesses that have struck each of our kids in young adulthood, those earlier tests now seem problems of limited magnitude with straightforward strategies and solutions. Where we are today is a foreign land with no markers or exits, and where we question our own competence.

I know my family’s experience is not an aberration. The major mental illnesses — bipolar disorder, schizophrenia, and depression — typically manifest in the late teens and early 20s. According to the National Institutes of Health, just over 4 percent of all U.S. adults aged 18 to 25 have a serious mental illness. 

It is thought that the biologically based illnesses, which produce a vulnerability in mood regulation and thought processes, are stirred to the surface by external stressors.That young adults may break down in their first year or two of college or graduate school is no accident. Away from the safety and structure of the family, presented with distractions and choices and enormous expectations to succeed, any student with a vulnerability may falter. Many students with incipient mental illness can be propelled by the chaos and pressure into a frightening struggle to maintain their stability. 

Also unsettling, especially to parents, is the fact that our kids are no longer minors, and the health-care system allows them to choose whether to participate in their own treatment and medications. (Try making a 20-something take a pill!) Every developmental instinct these young adults have tells them to push aside authority and go their own way. Only with maturing may young adults be better able to accept responsibility for their own health and act on it.

In the early years of my daughter’s struggle with a mood disorder, I did not talk to others about the turmoil. At the office I became immersed in work and proud of the creativity and effectiveness of the unit I led. I felt competent. But part of me was always on alert, never knowing at what moment a crisis could hit and I’d be summoned to the high school or hospital. Or perhaps it would be my daughter herself calling, crying for me to help her. Whenever I heard a ringtone — anyone’s ringtone — my adrenaline would spike, my heart pound, and my brain freeze. At night I began to have panic attacks, waves of feeling that something terrible was about to happen. 

My husband and I are educated and resourceful people, devoted to our children’s happiness and well-being, and yet we couldn’t protect them. We are financially secure, I was well connected through my job, and we were able to provide my daughter with top doctors and facilities in Boston, this renowned epicenter of medical care. But it didn’t matter. Still she wrestled with her moods and her self-destructive impulses. I began to question my competence and worth as a mother, as a person. I was failing, and I was scared. My daughter’s life was at risk.

A psychiatrist helped me talk about my distress and learn to manage it. Anti-anxiety medication was effective. Strategy sessions allowed me to feel less helpless. After awhile I was able to tell my work staff why the boss sometimes had to drop everything and dash out of the office. Even then I couched the situation in euphemisms: “My daughter is having a bad day.” Bit by bit, as the years passed, I allowed myself to explain what was happening to those closest to me — my sister, my cousin, the girlfriends in my book group — especially after the relentless anxiety impaired my very ability to read. 

But there was a time of year when I would not speak of these things, and, I now know, neither would an untold number of our classmates. When mental illness robs your children of their abilities and their prospects, a parent mourns. My husband and I had ambitions for each of them, a specific imagined future particular to our peer group. Was it somehow our fault that this vision was dashed? What paths were open to our children now? Could they be happy? Could we be happy? Could we ever see our lives and theirs as anything but diminished?

At Reunions, in the company of our high-achieving Princeton alumni community, the story of my family’s distress stayed locked up tight. I’d never read about my kind of struggle in Class Notes. There were entries about families facing a loved one’s cancer or recovering from a heart attack. But no one mentioned this.

I was as guilty of Class Notes silence as anyone. Amid the crowings of my classmates about their children’s Ivy League acceptances, I kept quiet about my daughter’s disastrous first semester at an obscure college and sent word to PAW only when she transferred to a prestigious art school — neglecting to follow up with news of her quick emotional descent there. 

Similarly, I let everyone know that my son won early acceptance at a highly competitive college based on his poetry, but not that he ended his freshman year with an inexplicable nervous breakdown and spent the following year mostly in our house before having a similar experience at another college. A hospitalization followed, and we learned that he was suffering from bipolar illness, a thought disorder that impairs cognition and the processing of external information. The door to his academic life seemed to close with a slam.

We now had two kids with mental illness. What were the chances? Our children are not related genetically: We’d adopted our daughter as an infant, and our son had been a surprise pregnancy.

In the midst of his suffering, my son turned a sympathetic gaze on his parents. “I guess you wish that you had other kids instead of us,” he said. My heart fell. I told him no, that there were no imaginary, ideal other kids out there whom I preferred. What I wanted was for my kids to feel better.

And it was true. I had let go of vicarious ambition and trivial matters. When your kid is coping with mental illness, you get to the bottom line fast: He’s alive. If you have that, you can start feeling ambition for the child to be healthy and then happy. That’s all that counts.

My selective silences ended abruptly at my 40th reunion. I sat down at a table under the tent to catch up with a classmate I hadn’t seen for many years. He told me eagerly about his two sons — one finishing at an Ivy college, the other in a terrific job in New York. Then he asked me about my family. I was about to fudge things, but then, with an unexpected feeling of freedom, I plunged ahead and told him that my daughter was stable now after years of hospitalizations and that we’d just learned my son had bipolar disorder. Sadly, neither kid had been able to finish college. 

Then the most shocking thing happened. 

A look of chagrin came over my classmate’s face. He hesitated for a moment, then bent toward me. Actually, he said, his young adult daughter was still living with them at home. She, too, was mentally ill.

Had I not been forthright about my own situation, my classmate would have kept the very existence of his child a secret. I decided then and there that this silence had to end — for everyone who comes to Reunions.

So it was that last May, with the help of the University, I organized a Reunions panel: “Parenting Young Adult Children With Mental Illness.” It drew a standing-room-only crowd of 70 people, many leaning against walls and sitting on the floor in a McCosh Hall classroom. The audience participation was fervent and heartfelt. The overall emotion was relief. Many parents told wrenching stories, asked for help, and were given advice and resources from those in attendance and from the panelists — psychologist Calvin R. Chin, director of counseling and psychological services at Princeton; and my friend and classmate, Laurie Watson Raymond ’73, psychiatrist and former director of advising resources at Harvard Medical School.

Attendees spoke of having avoided Reunions in past years. One alumnus’ story of long self-exile from campus for fear of being asked about his ill daughter brought the room to tears. Others had made peace with their change in life expectations for both themselves and their kids. One couple spoke movingly of how much their son added to the home life of the family, now that they’d decided he was better off living permanently with them. One mother could not get her ill daughter to speak with her and didn’t even know for sure where she was. Another family could not control their son’s outbursts. Many people stayed long afterward for additional discussions in small clusters. It was, in some sense, a mini-reunion of people who hadn’t known until then that they had this in common with such a large group of fellow Princetonians.

I can tell you that lately my daughter is relatively stable. She has an apartment, a job, a fiancé, a dog, and a vision for the future. My son has not had a hospitalization in quite a while and is living at home. While he still is depressed, he is participating (albeit reluctantly) in treatment. My Princeton friend’s son is much better, lives independently, and runs his own company. He continues to attend AA meetings.

My husband and I still feel on alert, not sure when the next kid crisis might come or whether we can plan our own future, sell the house, and live on the downsized scale that we’d prefer and would help secure our retirement. The probability of having to support our kids indefinitely is real. There’s a lot we don’t know and a lot we only dare to hope for. But I’m through with whispering under the trees, and that sure feels good.

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hermanRobin Herman ’73 is retired from the Harvard School of Public Health, where she was assistant dean for research communications. This article originally appeared in the Princeton Alumni Weekly, January 7, 2015. Reprinted with permission.


Coming together on “the who” and “the what” so “the how” is actually what we need…

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Morning Zen Guest blogger ~ Jody Levison-Johnson

This Zen post was written in response to the recent CMHNetwork update on upcoming dialogues addressing key issues in the Helping Families in Mental Health Crisis Act.

It’s time to nail down what we mean. If children’s mental (behavioral?) health advocates truly intend to come together to advance what would be considered “good policy”, then we had better get really clear on what we are talking about. In our lofty aspiration to advance a better system we often use sweeping generalizations about what we are seeking, “expanded community-based services for individuals with severe mental illness,” “community-based services and supports,” and “array of outpatient treatment options” and about who we are advancing this system for “people with severe mental illness,” “those with significant emotional and behavioral challenges,” “children and youth with serious emotional disturbance.”

Some may say that this is simply a matter of semantics. And it is; just not simply. All of these terms mean different things to different people. Advancing a coherent and cogent policy statement will require agreement on these things, which can potentially be as complex as the AOT dialogue.

This discussion is of critical importance. Determining “the who” ultimately drives “the what.” If we intend to launch a credible conversation to align the content of HR 3717 with what we know to be best practice we need to think long and hard about whether we are advancing a policy that is focused on young people (defined how precisely?), their families (which includes adults who often face similar challenges)? Are we simply concerned about mental health or are we willing to concede that addiction challenges and co-occurring disorders are far too common, equally not effectively addressed, and that we can’t afford to leave those out of what will hopefully shape up to be a capable future system?

Once “the who” is addressed, then great thinkers from across the spectrum (young people, families, clinicians, researchers, system partners, advocates) need to come together and agree on “the what,” the best practices worth advancing. When good policy is passed it will fall to federal, state, and local governments to respond with “the how.” Leaving that to chance is a crapshoot we should not be willing to take. This is worthy of thoughtful consideration. If you think things like “community-based services and supports” are clearly and universally defined, travel to different parts of the country and listen to what this means to them. In some states, this term can and has been used to refer to large congregate care settings that defy best practice standards but are situated “in the community” (i.e. not on some campus in rural wherever-you-may-be miles from a population center). Some have even argued that private hospitals and those on campuses with other services are in fact “community-based services” because they may be located in an urban center or are co-located in a “community” of other services. We must ask ourselves and ultimately answer these questions: what is the effective array of services and supports that effectively prevent and treat mental health and addiction issues? What services and supports need to be available for people to live productively before, during and after a mental health or addiction challenge?

It’s time to get down to semantics people…or else we compromise our credibility and our ability to advance best practices to people who truly deserve them. 

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jodyJody Levison-Johnson is the Executive Director of the DC and Maryland operations of Choices, Inc., a children’s care management organization. She has served as a top state behavioral health official and also provided technical assistance and support to communities across the country in advancing best practices in the area of children’s behavioral health. Jody serves on the Children’s Mental Health Network Advisory Council. 

The imminent demise of parent voice, sort of

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Morning Zen Guest blogger ~ Lisa Lambert ~

The other day I opened my mouth and my mother came out. This happens to most of us as parents whether we expect it or not. There are phrases that you heard over and over again as a child and you find yourself repeating them. Maybe it’s a prediction (Someday, you’ll be glad you had to say “please”), maybe it’s encouragement (You can do anything you put your mind to) or maybe it's just the way you say“I love you” to your child. What all of them have in common is that in your family, this was parent voice. It’s passed down from generation to generation.

Parent voice became a growing part of children’s mental health services through the persistence and persuasion of parent leaders. It grew from an individual voice to a collective voice asking for a role in our child’s treatment and a seat at the governance table. Progress was slow at times and while some providers and decision-makers embraced family involvement, others said to themselves, Aren’t parents part of the problem?

The amazing thing was that parent voice incorporated what families said was important, not what others thought should be in it. (Note: it’s often called “family voice” to include grandparents, foster parents and others raising children, but it still comes from the same set of experiences.) Parents said that each family is unique and their strengths should be the centerpiece of any care plan. Parents said that they didn’t want others raising their children, even if they were in out-of-home placements. Parents said to respect their culture, their decisions and their expertise. Models such as family-driven care were developed and parents became trainers, evaluators and colleagues.

In many ways, parent voice had its heyday in the early 2000s. There were still too few services and many remained deficit based. But parent voice was recognized in many places as unique and indispensable and more and more attention was paid to it.

Most parent leaders (like me) thought that there was room for parent voice alongside adult consumer voice, youth voice, provider voice and professional perspective. We often tolerated being the token parent representative and advocate for more parents in various roles. We partnered with others who had “lived experience” to promote its value. We advocate, we collaborated and we thought we had claimed solid ground.

Initially, we argued with adult consumers, often in their 40s and 50s, who had worked to retain control of their treatment decisions, take back their strength and gain respect. Some were uneasy with parents, especially when their own parents had made decisions about their care that they felt was harmful. But we talked and found common ground. We explained that children are not little adults and do better when their parents are their advocates, their supporters and often, their voice. Parents have their own unique experiences, too, which often galvanize them into seeking changes in the system that provides services for their children.

Then along came youth voice, which we also promoted. After all, in most families you want your teen or young adult to be a critical thinker, have skills to deal with complicated systems (including behavioral health) and craft a life that has meaning and makes them happy. That’s what parents do, right? My own son used to watch and listen as I talked to his insurer or argued with his school. “I want to be as good an advocate as you are,” he would say. The original metaphor for family driven care was a van, with the parent driving behind the wheel and various professionals, educators and other providers giving directions and expert advice. Eventually, as the child grew, he or she became the student driver, then the sole driver of the car. But the parent was still there, often riding shotgun.

So what has happened to parent voice? Well, sometimes the very things we work for and want to see happen create changes in unexpected ways.

In the introduction to Family Peer to Peer Support Programs in Children’s Mental Health: A Critical Issues Guide, three types of family support are identified. They include the family partner, often seen in wraparound; paraprofessionals, who augment the role of providers; and family peer support which provides support, information and advocacy. The Guide points out that family peer support – which strengthens parent voice – is at a critical crossroads. This remains true today.

In Massachusetts, as in many states, family partner roles have grown exponentially. They are well defined and often incorporated in mental health services. Clinicians are becoming more accustomed to working with family partners (which is excellent). These roles are well defined and family partners coach and assist parents in using their family voice to help determine their child’s care. But there it ends. Here, parent voice is about individual treatment, not advocacy or systems change. Family partners are essential but they are also becoming the way we do business. They are just one perspective among many in their organizations; a note in the melody, sometimes a minor chord. We worked hard to grow the numbers of family partners but their role is not robust enough to carry parent voice into systems advocacy.

Ten years ago, youth voice was a fragile and new sound. There were a handful of youth in the public arena and no one was sure if their experiences were unique or represented hundreds of others.Family voice included parent voice and youth voice and while they weren’t the same, we were all used to that. After all, our own families included both types of voices and we somehow made it work. Organizations like mine fostered youth voice and listened in delight and awe as it grew.

In some discussions about policy and practice, youth voice is now stronger than parent voice. It is still unexpected, often unedited and startling. But there is a subtext at times that when parent and youth voice don’t align, everyone must choose which to hear and honor. It reminds me of those early times with adult consumers when we saw parent and consumer voice having too little common ground. In our families we expect different voices and each is important. The same must be true in public conversations as well.

Parents have also recounted their unique experiences in raising youth transitioning to adulthood. Sheesh, I know this one well. It’s a kind of dance with your son or daughter where you step forward to embrace and support and cha-cha backward to create space for independence. I recently heard the phrase, “parents as adult allies” where parents were tossed in with other adults in a young adult’s life as supporters and cheerleaders. This worries me. Parents are unique in their son’s or daughter’s life. Their relationship has many layers and textures and nuances that no one else can come close to. We all have a learning period – sometimes a long one – where we find out when to offer advice, when to listen, when to be emotional and when to use your poker face. Sometimes we are allies, sometimes we aren’t. But we are always something no one else can be—parents. Parent voice needs a recognized place during transition to adulthood.

Parent voice has changed. Sometimes it is institutionalized. Sometimes it is muted. Sometimes it is seen as relevant to individual care but not needed for program design, evaluation, policy work or systems reform. Wherever we find it, we should listen. Parents continue to experience the behavioral health system in ways no one else does. Each week I talk to a parent who wants their journey and their story to mean something; to make it a little better for the parents coming after them. When I open my mouth and my mother’s voice comes out, it says“You can be anything you want to be.” Parent voice can change the world too. We need to value it enough so it does. 

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lambertLisa Lambert, Executive Director, Parent/Professional Advocacy League (PPAL) and Children's Mental Health Network Advisory Council member – Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL), a statewide, family-run, grassroots nonprofit organization based in Boston. Lisa serves on a number of committees in Massachusetts as well as the Building Bridges Initiative Youth and Family Partnership workgroup. She has been instrumental in working with local and national media to highlight the concerns of families and youth. She is dedicated to ensuring that family voice is included in every state and national conversation about the policies, practices or services that impact them.

Posted on the PPAL website

Next steps for CMHNetwork focus on the Helping Families in Mental Health Crisis Act: It’s gonna be a busy year!

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At the end of November, the Children's Mental Health Network convened a group of mental health advocates in the conference room of Minority Whip Steny Hoyer for the third of three dialogues on Assisted Outpatient Treatment (AOT). The AOT issue is one component of the Helping Families in Mental Health Crisis Act and has been a lightning rod for controversy. Championed by Representative Tim Murphy (R, PA-18), the proposed bill has dominated the conversation in mental health circles over the past year, leading to divisive splits among advocates about what should be included in a comprehensive mental health reform bill. The bill (HR 3717) didn't go anywhere in the last Congress, but support is growing with members of Congress.

Congressman Murphy announced this week that he would be reintroducing the Helping Families in Mental Health Crisis Act, in the new Congress. If his energy level is the same as last year, and we are gonna guess it is (we've seen his Fitbit wristband), then you are gonna want to hold on to your hats - mental health reform will be an active topic in Congress and behavioral health advocacy circles. For stimulating the conversation about mental health reform, we are  most grateful to the Congressman, but with that gratefulness comes a heavy responsibility for us as mental health advocates to double and triple our efforts at dialogue with each other to ensure that Congressman Murphy and members of Congress get all of the information they need to write a comprehensive bill that will help fix the broken mental health service delivery system in America.

  • You can watch Congressman Murphy's floor speech from earlier this week, where he announced his plans to reintroduce the Helping Families in Mental Health Crisis Act, at the end of this blog post.

If you are new to the conversation we have been holding for the past year on Assisted Outpatient Treatment, get up to speed by reading the background here. Otherwise, continue reading to learn the results of the third dialogue and next steps for the Network as we continue to bear witness to developments in mental health reform in America.

Dialogue series on AOT - moving forward with concrete action steps

The third of three dialogues on Assisted Outpatient Treatment, like the others before it, brought together families, advocates, research scientists and great legal minds representing positions across the spectrum of the AOT debate. For some involved in the conversation, it was a chance to put a face to a name of others, who until this meeting, they may have only known through editorials and blog posts. I am happy to report that we found many areas of agreement. However, don’t get too comfortable, Network faithful, we have much work to do!  

The most important agreed-upon takeaway from the AOT dialogue in late November is that for the AOT process to work there has to be an array of outpatient treatment options available. Implementation varies widely across the 45 states that currently have AOT laws. Advocates for and against AOT share a mutual desire for expanded community-based services for individuals with severe mental illness. In order to ensure we know how best to inform expression of this need and which implementation strategies work best, the CMHNetwork will undertake two major steps:

Action Step #1. Participants in the AOT dialogue series will visit a community actively using AOT to understand better how the process works from the perspective of judges, providers, family members and individuals who have been on the receiving end. The focus of the visit will include a review of the entire service array - from high to low intensity.

Action Step #2. The Network will conduct a survey of the states who have AOT processes in place to gain a clearer understanding of the various approaches to AOT being utilized, the services and supports accessed, and how states and communities define the elements of a successful AOT process.

It's all about the “T” in AOT

A key focus at this dialogue was on the importance of the treatment plan, which needs to be sound and achievable in order to drive the AOT process forward. This seemingly small, and maybe even obvious, point provides us a shared foundation to focus the conversation where it needs to be when talking about mental health reform, and possibly most important – understanding the critical interconnectedness between a process like AOT and the community-based services and supports that need to be at the ready for the process to work. 

Action Step #1: We’re goin’ on a field trip!
We have spent three sessions “talking” about AOT. Now it is time for those who have been participating in the dialogues to observe the process, speak to the judges, families, young adults and providers who have gone through the process, so we can better understand the dynamics at play and what services providers find to be most effective. Our strong hunch is that it is much more than just a hospital bed, but we need to find out. Most important, dialogue participants will do this together, so that we can process what we have seen and heard, not in isolation from each other, but together. 

We will convene our field trip in February with a visit to a community that utilizes the AOT process. I have asked Brian Stettin of the Treatment Advocacy Center (TAC) to identify a community that most accurately fits the design of the AOT process being promoted by TAC and referenced by Congressman Murphy as part of his platform promoting the passage of HR 3717. During this community visit, we will observe an AOT hearing, interview the judge and other justice and mental health officials about the process we have just seen, meet with family members involved, and interview individuals who have actually gone through the AOT process so we can hear first-hand, about the process and accompanying successes and challenges involved.

As part of the visit to this community, we will also be looking at the array of community-based services and supports available to individuals with serious mental illness. Whether you agree with AOT or not, what I think we can agree on is that a process such as AOT cannot be successful without an appropriate array of services and supports available in the community. There are AOT laws in at least 45 states. As we learned at the second dialogue, the AOT process is widely variable in how it is used, depending on specific state and local requirements. I want to stress that the community chosen for the visit will not be chosen because it has a "perfect" mental health delivery system. I think we can all agree that, unfortunately, a perfect mental health delivery system does not exist. What we are looking for is a community that is actively trying to build AOT into their process for meeting the needs of individuals with serious mental illness. That is our starting point.

The AOT dialogue is the doorway we must walk through to move to a broader conversation about meaningful mental health reform. I have yet to talk with a provider who thought that hospitalization was all that was needed for a person with serious mental illness. You can’t just have AOT (whether you are for or against it) if you don’t have the necessary services and supports available in the community. 

Review of AOT laws in America
When mental health center directors tell me off the record that the problem with AOT is that they don’t have the funding for the services necessary to make the AOT process useful, I know we are placing focus where it is needed to broaden the conversation about meaningful mental health reform.This is an important theme, Network faithful. It is important for all of us to make the connection between a process (AOT) that by design, requires intensive outpatient treatment, with what the field recommends as successful approaches to meeting the needs of individuals with serious mental illness. One of the frequent remarks that I hear from mental health providers is that while it may be well and good for a judge to “require” treatment, if there are no treatment options available, it doesn’t do much good, and potentially leads to the concern expressed by community support advocates that decisions will be made that lead to an increase in hospitalization or residential care, instead of a more community-supported treatment focus. This is a classic chicken and egg conundrum, and the AOT debate is wedged squarely in the middle of this conundrum.

AOT advocates we speak with say that they want those community supports and see AOT as a way to ensure individuals get into a pipeline of care instead of ineffective and unacceptable options, with the glaring example being the skyrocketing rate of mentally ill in jails and prisons across America.

Advocates firmly opposed to AOT talk about never wanting to “force” someone into treatment that could likely result in hospitalization of some type, but should instead focus on increasing the array of self-directed community-based services and supports that have empirical evidence showing their success with young adults with serious mental illness.

Both sides are looking for similar outcomes – just approaching the challenge from different perspectives. When we talk with experts in the field about this, we invariably come away with an agreement on the following point – no one wants to force anyone to do anything. Ideally, we want a service delivery system that has a robust community component as well as the intensive services necessary for the small percentage of individuals who need them.

Action Step #2: The Children’s Mental Health Network will be conducting a survey this year of the states that currently have AOT laws on the books. 
It's about time we understand how states and local communities are using AOT, if they use it at all. In spite of the ongoing national discussion about whether AOT is good or not, we really don't have a clear sense of what it looks like across the country, what services are involved, and how effective it is. Moreover, for those states and communities that either do or don't embrace it, we want to know why. Conducting this type of survey is hugely ambitious, and we will be reaching out to national partners to help facilitate this undertaking.

The Children's Mental Health Network will continue the dialogue series with a particular focus on the Helping Families in Mental Health Crisis Act

2015 promises to be a busy year for the Children’s Mental Health Network as we continue our unrelenting focus on bearing witness to research, policy and practice developments in children’s mental health. We are planning to facilitate a minimum of three dialogues focusing on key issues identified in the Helping Families in Mental Health Crisis Act. 

Dialogue topics chosen for 2015 are:

  • HIPAA reform

    The Helping Families in Mental Health Crisis Act calls for reform of the Health Insurance Portability and Accountability Act (HIPAA) and Family Educational Rights and Privacy Act (FERPA) to increase family access to information and eliminate barriers to communication between families and providers.
  • IMD exclusion

    The Helping Families in Mental Health Crisis Act calls for permitting federal Medicaid dollars to be used to pay for acute inpatient psychiatric treatment by creating an exception to the current Institutions for Mental Diseases (IMD) exclusion in Medicaid.
  • Re-appropriation of the SAMHSA budget

    One of the more controversial components of the Helping Families in Mental Health Crisis Act is the call for a re-appropriation of the federal Substance Abuse and Mental Health Services Administration (SAMHSA) budget to increase support for programs designed to help those with the most severe cases of mental illness. 

Gonna be a fun year, Network faithful. We will update you on the dates and locations of the dialogues. We are most hopeful that the generosity extended to us by members of Congress in allowing our dialogues to take place in the House Office Buildings will continue. If a congressional staff member gets just one idea that can help bolster legislation designed to improve services and supports for individuals with mental illness and their families, then it is worth it. We think it is. Let your representatives in the House know that you think it is worth it as well.

Keep those cards, letters, and donations, coming! We are gonna need all the support we can get!

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scott

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

  
3rd dialogue
November 21, 2014 ~ Dialogue Participants ~ Front row, left to right: Bethany Lilly, Bazelon Center for Mental Health Law; Shibli Nomani, Asra Nomani, Treatment Before Tragedy; Maria Silva, Allegheny Family Network; Lisa Lambert, Parent Professional Advocacy League; Debbie Plotnick, Mental Health America. Back row, left to right: Dennis Embry, Paxis Institute; Scott Bryant-Comstock, Children's Mental Health Network; Brian Stettin, Treatment Advocacy Center; Ron Honberg, National Alliance on Mental Illness; Mary Jacksteit, Creating Community Solutions. 

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Congressman Tim Murphy (PA-18) kicked off the 114th Congress earlier this week with a speech on the House Floor providing "the rest of the story" to the incomplete news reports about tragedies occurring as a result of untreated serious mental illness. Dr. Murphy also announced his plans to reintroduce his comprehensive mental health reform bill, the Helping Families in Mental Health Crisis Act, in the new Congress.
 

Can we prevent psychosis? It’s more hopeful than NIMH Director Insel thinks

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Morning Zen Guest blogger ~ Dennis D. Embry, Ph.D. 

The Director of the National Institute of Mental Health, Dr. Thomas Insel wrote on November 20, 2014:

  • “Each year, about 500,000 young people in this country seek help for symptoms that resemble the prodrome of a psychotic illness. They are not actively psychotic, but they may be struggling in school, dealing with odd thoughts, and becoming socially isolated. Some describe brief hallucinations or paranoid ideas. Many have become “basement kids,” playing video games alone most of the week and losing interest in the world above ground. Most of these youth will, ultimately, be fine. But about one in three of those identified as high risk will have a first psychotic episode within three years.

    Can we predict which teens will develop a psychotic illness? For heart attacks, we know that obesity, hypertension, and high blood lipids all increase risk. Predicting which adolescent with prodromal features will develop psychosis is not so easy. We lack biomarkers, like blood lipids, that increase risk. Indeed, in most studies, the majority of “high-risk” individuals never go on to develop a psychotic disorder. Very recently, the North American Prodrome Longitudinal Study (NAPLS) has improved prediction. Combining different types of information—cognitive testing, clinical features (e.g., unusual thoughts, suspiciousness, decline in social functioning), a history of traumatic events, and a family history of psychosis—over 70 percent of those identified as high risk went on to develop psychosis. For the first time we can accurately detect risk for psychosis in someone with prodromal symptoms, and the accuracy appears equal to or better than our predictions of heart disease or dementia.

    The bad news is that we don’t yet have an intervention proven to prevent psychosis in those at risk…”

Well, Dr. Insel, you are in luck and so are the 500,000 people and their families per year, because the news is a lot better than you first thought. Just a few days before Dr. Insel’s blog was published, scientists reported about the long-term prevention psychosis using omega-3, something Dr. Insel mentioned as hopeful in his blog but did not know at the time. The results were reported at International Early Psychosis Conference in Tokyo, Japan (Nov 17-19, 2014), see http://bit.ly/psychosisN3

I knew about the earlier report in the Archives of General Psychiatry in 2010 [1], and I loudly talked about it in Tucson where people I know were killed or injured by Jared Loughner on January 8, 2011, when he had a first episode psychosis. The one-year results were amazing, and now the long-term results seven years later are stunning—shown below. I knew about the 2010 study long before the terrible events in Tucson, because of my involvement with colleagues at the National Institutes of Health who were studying how omega-3 could avert or reduce many forms of mental illness [2-6]. The long-term follow up showing the promise of high-quality omega-3 (fish oil) for averting psychosis are remarkable. 

 embryfish

What might these results mean? The most optimistic extrapolation of these results from the Archives of General Psychiatry might mean that out of 500,000 prodromal people for psychosis each year—cited by Dr. Insel’s blog—suggests that potentially 30% fewer of those troubled individuals (about 150,000) might develop full blown psychosis years later. Even if subsequent studies show it’s only a 5% difference, it’s still 25,000 people saved.

Ah, perhaps you are wondering, “Does Dr. Embry have financial interests in fish oil?”  The answer is no, and nobody pays me to talk about it. I do so because omega-3 has terrifically good science that could save huge amounts of pain and suffering. So are there other strategies that might help avert, prevent or reduce the risk of psychosis? Yes, and those strategies have many other benefits for averting or reducing multiple mental, emotional, and behavioral disorders. Those other strategies can be implemented as a public health model, with many diverse prevention effects—that might happen well before young people are prodromal for psychosis.

Consider the well-known link of exposure to traumatic events and psychosis? Can such exposure be prevented scientifically? Yes. For example, exposure to child maltreatment is a significant risk, and a CDC sponsored study shows that it is possible to reduce population-level measures of child maltreatment in two years for about $15 per child ages 0-8 in communities [7], and even potential preventive effects are possible from a prime-time show modeling how parents successfully handle problematic children [8-10]. Averting early child-maltreatment could have many positive effects on not only averting psychosis but also many other mental, emotional, behavioral and related disorders. One needs to recall that the Adverse Childhood Experiences (ACE’s) literature—as exemplified by the Kaiser Permanente study [11-13]—happened in middle-class families, not just among children living in bad areas. Thus a public-health approach to averting child maltreatment, and not just case-finding mode for abused children is needed to reduce the prevalence rates of maltreatment and related lifetime sequelae mental and physical disorders.  

What about averting or reducing the early trajectory of mental illness (emotional problems, ADHD, conduct problems, peer problems etc.) among young children that foreshadows elevated risk of psychosis later as young adult? Could such protection be implemented as a universal model to reduce mental health morbidity and mortality? The answer is yes, and the strategy was specifically noted in the 2009 IOM report [14-17]. Because of the powerful prevention effects and cost-effectiveness [18], the Substance Abuse and Mental Health Services Administration (SAMSHA) funded real-world expansion of the strategy in scores of sites across America, which my colleagues and I support as the PAX Good Behavior Game (http://bit.ly/NREPP). It’s the most widely used practical version of my colleagues’ prevention studies at Johns Hopkins (about 8,000 classrooms), and we’ve been able to show that the expected effects are replicable in the real world for averting or reducing the trajectory of mental, emotional, and behavioral disorders [19].

Please note, I have all sorts of conflicts of interest with PAX Good Behavior Game in terms of income, which doesn’t negate its proven benefits. This strategy is not about classroom management. Rather, it is a simple behavioral vaccine [20, 21] in first-grade classrooms that teaches self-regulation that, in turn, reduces multiple lifetime mental health symptoms that elevate risk of lifetime serious mental illness, addictions, violence, early risk sex, and even suicide for less than the cost of a measles, mumps, varicella and rubella vaccination. Behavioral vaccines are simple daily practices that reduce morbidity, mortality and improve wellbeing. Seatbelts and hand washing are real-world examples of behavioral vaccines. And for the big boat rocker about your genes being destiny for mental illness is that equipping parents and teachers with simple behavioral vaccines cause protective expression of Brain Derived Neurotropic Factor (BDNF) genes [22], which regulate many outcomes of mental disorders. There is considerable evidence that nurturing environments versus toxic environments [23] cause expression or suppression of genes associated with mental, emotional, and behavioral disorders disorders [24-28]. Most people over age 30, unless they are students or scientists of epigenetic factors, know that the social environment changes gene expression in humans.

I suspect that there are novel behavioral vaccines that have not been mobilized to prevent the terrifying emergence of psychosis. Consider two examples. We’ve known both scientifically and practically that heavy marijuana use elevates the risk of psychosis [29, 30]. We’ve also known that sleep deprivation can trigger psychosis [31-34], something that I have witnessed of the admissions unit of psych hospitals. Sleep problems are now epidemic among American young people, and almost every case of the mass shooters (like Jared Loughner in Tucson where I live) had major sleep problems. We know now, too, thanks to an elegant epidemiological study that sleep problems among teens is “contagious” across social networks and that then increases the risk of marijuana use and abuse [35]. There are practical strategies and policy options that reduce both causes of psychosis.

Can these proven and possible preventive strategies for lifetime risk of mental illnesses be deployed across America to protect the coming generations of young people? Yes, absolutely. Consider our past ingenuity in this country.

When the polio epidemic struck hard in America in the 1950s, people frantically called for more post-infection care—iron lungs, braces, crutches, wheelchairs and physical therapy. In a way, we are like the 1950s when it comes serious mental illnesses, stuck in the notion of treating the disease until the publication about Salk Vaccine triggering polio antibodies [36]. Right after the theoretical proof of the Salk Vaccine, Thomas Francis and colleagues lead mobilization to prove we could actually prevent polio among 1.8 million children [37], and the Salk Vaccine actually prevented polio—paving the way to universal protection of children against polio. In just five years after the national mobilization to assure all children were protected against polio with either the Salk or Sabine vaccine, we had only 168 cases of polio in 1963 from a high of 60,000 cases in the early 1950s.

Today, we have as good or better science for preventing mental illness than we did with Jonas Salk’s polio vaccine in 1954.  His study only showed reduction in antibodies for a few thousand of kids. Today, we have scores, if not hundreds, of studies showing we can actually avert, reduce or even prevent mental illnesses —and not by just one method.

Now why have we NOT acted? That’s a good question, and I can only opine about that. Here are some reflections on my part.

Unlike polio, mental, emotional, and behavioral disorders have been consigned to faulty genes and biochemistry. It’s the fault of your stars, if you will. There is a damn serious problem with that homage to genetic or chemical determinism: 1) the same 2009 IOM Report [38] and cited references show that mental, emotional, and behavioral disorders are increasing almost every two years in longitudinal cohort studies [39, 40]; 2) the Wall Street Journal found that 40.4 million out-of-75 million young people in 2009 had at least one prescription for psychotropic medications [41]; and 3) a other studies show historic rises in mental, emotional, and behavioral disorders in America that cannot be attributed to “over-diagnoses” [42]. 

Something is wrong in our social and cultural environment, triggering gene expression and adverse biochemistries. I made this point very real in my December 3, 2014, Congressional Briefing in very simple way. I asked all the 30-somethings to raise their hands, which was about half of the room. Then, I asked all the 50 and over people to raise their hands, which was about a third of the room. Next, I asked how many of the 30-somethings to raise their hand, if a high school or college friend of theirs had committed suicide. Almost all of them raise a hand.  Finally, I asked the question of the 50-something people, and only three raised their hand. A gasp occurred in the room, with the point made. Suicide is the terminal end of mental, emotional, and behavioral disorders, which is not easily dismissed as “over-diagnoses.”

Suicidality today is massively more epidemic that polio was when I was a kid.  Corrected for population today, the 1950s polio epidemic would have killed 6,000 kids and young adults and infected 120,000 people.  And suicide? CDC reports that 38,000 people killed themselves, and 706, 000 people showed up emergency rooms with self-inflicted injuries—excluding single car crashes and drug overdoses.  That many people were born with defective genes that cause them to try suicide?

The faulty gene and biochemistry story has also given rise to the massive marketing of psychotropic medications in the U.S. No other rich country has this influence. The massive marketing supports the notion that these problems are genetic and biochemical, immune from the scientific forces of prevention using a pubic-heath model. Instead of marketing medications, rich European countries, Canada, Australia and New Zealand have been far more likely to invest dollars into population-level approaches to averting, preventing or reducing mental emotional and behavioral disorders. Interestingly, those other countries have lower morbidity from mental, emotional, and behavioral disorders—reported in another recent IOM report [43]. It’s more probably that the prevention and practices lowered the prevalence rates, than the citizens of those countries have better genes.

All of the above has oddly stilled any public outcry for preventive action, unlike the constant drum by the March of Dimes and media to find a way to prevent polio 60 years ago. Thus, I’m asking the people and organizations like Children’s Mental Health Network, Mental Health America, and the Federation of Families for Children’s Mental Health to help foster a true, national public-health approach to prevent mental, emotional, and behavioral disorders. We’ve got pretty damn fine science to do it. So ask your elected representatives—from a federal to local level if they will step up and support the equivalent of the 1950s campaign that ended polio. I’ll bet virtually every elected official in America has young family members who’ve been harmed by the present, preventable epidemic.

What can be next steps to kick off a movement to begin protecting all our kids from the scourge of lifetime mental, emotional and behavioral disorders? Here you go:

  • Tweet or FaceBook this essay, and add the hashtag #saveallkids.
  • Share the information about using omega-3 to prevent psychosis with local clinicians and providers, and yes omega-3 is FDA approved and can be proscribed off-label for this purpose. 
  • Download the estimated savings by protecting every first grader in the US and your own state from lifetime risk of mental, emotional, and behavioral disorders that SAMHSA has been funding across the U.S. and was in the IOM report. Here is the hyperlink for all state estimates and the US estimate:  http://bit.ly/PAXGBG-50states-nov2014.
  • If you doubt the science, spend some time reading the science freely available at the National Library of Medicine (see www.pubmed.gov), start by searching the terms “behavioral vaccines” and “evidence-based kernels.” You can also read the whole 2009 IOM report, http://bit.ly/Full-IOMreport2009.
  • And, you can watch the primetime documentary on the Canadian Broadcasting Corporation about the possibility of preventing these problems: http://bit.ly/CBC-PayNow-Or-Later

And one other thing, write a check or whip out your credit card to support the Children’s Mental Health Network that published this. It’s the only web presence that makes this kind of action possible. I just gave them a $1,000.00. Together, we can save all our kids.

PS. Of course we won’t be able to avert every case, but it will be a way better world…#saveallkids

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enbry

Dennis Embry, President/Senior Scientist at PAXIS Institute – Dennis D. Embry 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 colleaguesiscited 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. Dr. Embry serves on the Children's Mental Health Network Advisory Council.  

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Let’s work together to finally stop public and private systems from denying care and forcing our loved ones to go from crisis to crisis

1 Comment | Posted

Morning Zen Guest blogger ~ Debbie Plotnick

How did we ever get from “no one will be treated for mental illness against their will unless they are a danger to themselves or others” to “no one will get treatment for a mental illness unless they are a danger to themselves or others?” The only difference between the two parts of that sentence is the words “against their will.” This has caused many deeply caring families, and others of good conscience, to become so desperate as to place their hopes on passing laws that will only serve people after they’ve been repeatedly failed by the mental health system.

We all know that in most locales mental health services and supports are at best spotty, and even likely to be down-right terrible. Families are often driven to despair, unable to access mental health treatment at all until there is a crisis, or worse yet multiple crises. Even when services are in place for kids, parents are scared to death that the minute their child turns eighteen and they enter the so-called adult system everything will go away—or worse yet their child will reject help altogether. This is why some parents believe that enacting what has become known as AOT (assisted outpatient treatment) laws will help their kids.

AOT laws are very specific and have very strict criteria. That’s why even where such laws are on the books, and where they are implemented (meaning counties are willing to create the infrastructure to oversee them, and to provide the dollars to fund them), very few people are subject to these super-sized involuntary treatment orders. In the ongoing debate, we hear conflicting and confusing information. Forty-two states have involuntary outpatient commitment laws (IOC), but yet in many of them there are repeated attempts to pass AOT laws, usually advocated for by parents.

Under AOT provisions, a person can be committed to outpatient services for a period of six months. But before an individual, age eighteen or older, can become eligible for this extended community commitment, they have to (among other things) have been diagnosed as having a serious mental illness, to have had a least two prior incidents of involuntary hospitalization or imprisonment due to their mental illness in the previous thirty-six months, and be “unlikely” to accept voluntary treatment. The unlikely part is very hard to prove, mostly because—as desperate parents know—all too often there are hardly any services, let alone the continuum of services necessary to help keep people from cycling in and out of crises, that are available.

Research from the largest studies assessing two of the best known AOT type laws from New York and South Carolina showed that the mean age of those under AOT orders was 39 years and 37.9 years respectively. It also showed black people were five times as likely as whites to come under AOT orders. People coming under AOT orders are never kids or adolescents, and very rarely are they transitional age youth (between 18 and 26). The research does show that when these laws are in place and funded, then the people who have been failed many times by the system and then come under AOT orders do better than they did before. They have fewer hospitalizations, are less likely to be homeless than they were before, and they have fewer arrests and spend less time incarcerated. Research is also clear that these outcomes are highly correlated to the funding that brings care coordination and services to people who early on likely had been willing to accept help…but were let down—time and again.

The question that I ask myself, and I pose to other parents like me, who know what it is like to be willing to tie their kids up in a burlap sack and lock them in a closet—court order aside—are these the outcomes we want for our kids? Does it really make sense to put so much of our energy into advocating for laws which research predicts would only to apply to our kids once they’re approaching middle age and only after they have been hospitalized and arrested many, many times. Do we really want to pin our hopes on outcomes that don’t measure recovery, education and employment status, but which only strive for reductions in the number of times people end up homeless, hospitalized and jailed?

Many people, parents, legislators, even mental health professionals are confused by what the difference between regular involuntary outpatient commitment (IOC) and AOT. Let’s take a look at my home state of Pennsylvania as an example. Similar to most other state laws, Pennsylvania’s Mental Health Procedures Act has had IOC, which provides for inpatient or outpatient commitment, on its books since the 1970’s. Under its provisions, commitment can be either to inpatient or outpatient services. Commitments can be for 3, 30, 60, 90, or up to one-hundred and eighty days (six months). So, why are shot-term commitments hard to come by and long-term commitments rarely used? There are two reasons. First it’s always better (short or long) for the individual and their family if a person (adult or child) voluntarily engages in treatment and support services, and they are much more likely to do so when what is available feels helpful, safe and supportive. The second reason, which Pennsylvania also satisfies, is that if good services are in place, few people will need to be remanded to long-term involuntary commitment. Overall in the state there are good services and quite a few of what I call “pockets of excellence.” These are communities that offer really good services for children that wrap-around the child and their family. There is also recovery-focused outreach that successfully engages even people who are very reluctant to accept help. And the services for adults and kids include a wide array of peer services.

But still many people don’t get help. Some of it is because these pockets of excellence are just that, pockets. It is rare to find the continuum of services and supports needed to keep people employed, in school, housed, and to fully address all of their health needs, including substance use treatment. But to qualify for these most of these support services, when there are available, the individual usually has to be on Medicaid, and be served by the perpetually underfunded public systems. This is because until we had the new laws that are just coming into effect, such as the Affordable Care Act (ACA), the Mental Health Parity and Addiction Equity Act (MHPAEA), and Medicaid expansion (unfortunately not in all states), we had no mechanism for paying for, let alone growing, the availability of services. Now that we do have more financial avenues, it will still take some time and lots of effort to make sure that there is a continuum of collaborative care services. This means services and supports that serve young people and their families. This means serving people at every stage of life. This means treating and supporting the whole person—all their health needs, including substance use. These new laws have the means to allow families to finally get prevention services for family members at risk, providing early interventions and caring coordination. They can help us to, make use of evidence based practices, such as supported education, employment and housing, and for recovery to be everyone’s goal. But it will take work.

Let’s stop arguing over whether we need change existing state statutes from generic IOC laws to AOT laws. Let’s work together to finally stop public and private systems from denying care and forcing our loved ones to go from crisis to crisis. Let’s work together to ensure that our new laws help kids, families and adults at all ages and stages of illness to get to recovery and achieve the kinds of goals every parent really wants.

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debbieplotnickDebbie Plotnick, Senior Director of State Policy, Mental Health America, works with affiliates and state and local advocates on Medicaid, health reform, and state mental health programs and policies. She also coordinates the efforts of the Regional Policy Council, a ten person council of state affiliate policy leaders. Debbie also provides technical assistance to mental health advocates, participates in national mental health coalitions, and develops and disseminates policy information for affiliates, stakeholders, decision makers and the general public. She can also speak about community inclusion, evidence-based practices, and her own experiences with mental health challenges and as a family member. 

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