Weighing in on the controversial topic of Assisted Outpatient Treatment

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Morning Zen Guest blog post ~ Lisa Lambert ~ 

When my son was 19 years old, he went off his psychiatric medications. He had just graduated high school from a residential program where taking prescribed medications and going to therapy was mandatory.  “I just want to see what I’m like without them,” he said. “I’ve been on meds and in therapy since grade school,” he reasoned, “so maybe I don’t need them anymore.”

Within 3 days, he spoke so rapidly you had to watch his lips to understand everything he said.  He slept 2 or 3 hours a night and had boundless energy.  He pronounced himself “hippy-happy.”  Within 5 days, he began to see things that no one else could and became agitated easily.  I held my breath.  In the past, “hippy-happy” had turned into instances when he thought there were conspiracies against him and other times when he threatened me or his younger brother.  This time, we were lucky.  He trusted my observations and those of other people he felt close to and resumed the medications after 12 days.  For him, medication turned the switch back to normal speed and shifted his reality back to where it meshed with other people.  But what if that hadn’t happened?

There is an emotional debate going on in mental health circles across the country right now about Assisted Outpatient Treatment (AOT) which compels people over 18 with mental illness and who are considered a safety risk, into treatment.  On one side are those who are worried about preventing shootings like those in Newtown and Aurora, who point out that compelling treatment is better than jail.  They believe there needs to be a process where someone with a serious mental illness can be ordered by a judge into treatment.  On the other side of the issue are those who worry that such a law can take away the self-determination and independence of people with mental  illness.  There is little common ground.

What do parents of young people think?  With some exceptions such as Liza Long, much of the debate about AOT has been waged by adult consumers, mental health professionals and legal groups.  If we want changes (or not) that work for us, parents of young people need to weigh in.

Young people are living at home in droves.  And not just young people with mental health or behavioral health issues. In 2012, 36% of the nation’s young adults ages 18 to 31 were living in their parents’ home, according to a Pew Research Center analysis, the highest percentage in at least four decades.  A great many have remained on their parents’ insurance as well.  Their day to day lives are intertwined with their parents, their siblings and often extended family as well.  This has become the new normal in America.

Parents of children and teens with mental health needs are used to being involved.  They work for years to become knowledgeable and effective champions for their children. They fight for services in IEPs, advocate with insurers, stay on top of treatment and push for access.  As a colleague puts it, one day our children go to bed age 17, wake up age 18 and are supposed to be in charge of their treatment and navigate an unfriendly maze of services.  Parents are suddenly to be both not seen and not heard.  This is dissimilar to families where a young person has a chronic health condition; for them, it is considered a good practice for parents to stay part of the team while slowly relinquishing management of their child’s illness.

Parents make decisions based on what is best for the entire family.  When my then-19-year-old son went off his medications, I worried about the impact on his 16 year old brother.  Many families of young adults with mental health needs have other children living at home too.  It’s your job as a parent to think of the needs and safety of each family member.  Much of the debate about Assisted Outpatient Treatment is focused on rights or needs of the individual while parents always balance what’s best for the family with what’s best for each son or daughter.

Many families I know have used the courts to access treatment for their minor child.  Massachusetts has recently reformed its status offense laws (Children Requiring Assistance) but parents are still urged to file a petition saying their child is out of control by schools, therapists and relatives.  While it is a last resort and can produce mixed results, families are often comforted by the simple fact that there is an option they can turn to.  A number of parents of young adults have wished for a similar option where they have the ability to petition for services when they are desperate.

If my family were a game show, it would be Let’s Make a Deal.  We talk, we negotiate, we talk some more.  When my son went off his meds (the first time; yes, there were other times), this worked for us.  I talked, he argued, I listened, he did too.  But every family is different.  Luck plays a part as well.  He had a long relationship with his psychiatrist and trusted her.  His relationship with his brother was good at that point and he listened to his input.  At another point in time,  none of this might have been true.

Forty-five states have laws that permit the use of AOT.  Massachusetts is not one of them.  I have always been firmly in favor of stopping anything that lessens someone’s rights, especially their right to choose for themselves. But if my older son’s rights are in conflict with my younger son’s safety, my advocacy hat comes off and my parent hat goes immediately on.  Parents of children with mental health needs have to make tough decisions that are right for their family every day.  It’s time for us to weigh in on this issue too.

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

This article by Lisa Lambert originally posted on the Parent Professional Advocacy League website.

 

Tim Murphy is raising the right issues but proposing the wrong solutions

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Mental health advocates and experts agree that our mental health systems are the shame of the nation. As many psychiatric institutions — some of which were notorious for abuse and neglect — were shut down in the 1980s, jails and prisons became the new asylums and people struggling with mental health and substance-use issues were warehoused in even more inhumane and costly settings.

Our community mental health systems are fragmented, ineffective, difficult to access and fail to engage people who need the most help. Instead of providing needed social services for those who are homeless and experiencing serious mental health challenges or addictions, we criminalize their suffering.

Rep. Tim Murphy, R-Upper St. Clair, is to be lauded for shining a powerful spotlight on these issues. However, despite his good intentions and clear commitment, Rep. Murphy has it wrong when it comes to one of his most prominent prescriptions for fixing our broken mental health care systems.

The Murphy proposal — included in the Helping Families in Mental Health Crisis Act — pressures states to divert more than $130 million to expand the use of “involuntary outpatient commitment” court orders that serve only to force people into the same service approaches that have already failed to help them. It was drafted in response to the Newtown school shooting tragedy, in which a mentally ill Adam Lanza killed 22 people and himself, although people with mental illness are more likely to be victims than perpetrators of violence.

People with psychiatric disabilities who would be directly affected by Rep. Murphy’s bill are vehemently opposed to it. In every other area of medicine, it is recognized that patient-centered approaches that foster personal choice and dignity are far more successful in engaging people with the most serious conditions as active participants in their own health care.

Rep. Murphy argues that involuntary outpatient commitment — also known as assisted outpatient treatment — is a “less restrictive alternative” to the horrors of prison and mental institutions. But why make people choose the lesser of two evils? Why not focus instead on providing an upfront investment in voluntary housing and support services that are proven to work?

One such model is Housing First, an evidence-based supportive housing program that does not make people jump through hoops in order to get off the streets and find a safe place to live. Many individuals who have found decent places to live through Housing First go on to work toward recovery from their mental health issues and to become clean and sober.

One success story is Shaelynn, who was living on the streets, had a felony conviction and was using drugs and alcohol when she was accepted into the program. With the program’s support, she has achieved sobriety, has reconnected with her daughters and grandchildren, and is now doing very well.

Another evidence-based model is peer-to-peer support, which deploys trained individuals in recovery from serious mental health and or substance-use conditions to engage the hardest to reach people on the streets, help them access needed services and supports, and avert crises and tragic outcomes. For example, New York’s Peer Bridger program was able to reduce avoidable and expensive re-hospitalizations by 71 percent in 2009.

But instead of promoting these innovative and promising forms of engagement, Rep. Murphy’s bill seeks to cut federal funding that would make them more available.

Contrast this with Britain, which is working instead to reduce coercive interventions and promote patient-centered approaches. British psychiatrist Tom Burns, once a former supporter of community treatment orders — the British equivalent of assisted outpatient treatment — has changed his mind about the practice. He says that the research shows these laws don’t accomplish much.

Rather than pouring even more taxpayer dollars into promoting controversial coercive approaches, we should be expanding proven and promising practices.

We in America do not lack resources. What we lack is the political will to get this done. 

Published in the Pittsburgh Post-Gazette, September 10, 2014

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

Join the "Karaoke Challenge" for children's mental health!

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If you have a Facebook account or have watched a morning news program in the last few weeks, you have undoubtedly seen the “Ice Bucket Challenge.”  Friends and family are dumping buckets of ice water over their heads in an effort to make a fool of themselves to raise awareness and money for ALS, commonly known as Lou Gehrig’s Disease.  You can get wet or donate $100 to the cause.  The challenge has gone viral; neighbors and celebrities alike have participated, and this worthy cause has seen an influx of donations and people are having discussions about this horribly invasive disease.

On August 11th when the news broke that our world had suffered the tragic loss of one of the most brilliant comedians of all time, my heart was heavy. People asked the question, how could a man who made people laugh deep belly laughs battle depression so intense that he would take his own life?  And news story after news story reported what the world already knew, Robin Williams had battled mental illness and addiction his entire life, and even he made no attempt to hide it or stigmatize it.  He spoke publically about his battles with addiction, rehab, and depression.  Even this man who’s life’s work and career had touched so many of our lives through his various roles was not immune to the horrors of mental illness.  And in the darkness of the situation, I felt a little spark of hope that maybe out of this tragedy would come some glimmer of hope.  Maybe through this horrible loss, the world would find the courage to break down the barriers and the stigma of mental illness and have a discussion about how mental illness is under-funded, under-treated, over-stigmatized, over-shadowed by other more “physical” conditions.  Maybe his life and untimely death would open up the door for an educated, informed, fearless discussion about mental health.  My heart was broken at the loss of this iconic genius, but I started thinking about the “Ice Bucket Challenge”.

I wished that there was something akin to the “Ice Bucket Challenge” that would bring awareness and funding to the topic of Mental Health in the way that ALS was gaining awareness.  My 10 year old son and I sat down and thought about how we could challenge our friends and family to something similar.  My 12-year-old daughter has significant mental health challenges and has been hospitalized multiple, multiple times.  She is currently in a residential treatment facility because that is the best and only way to keep her and our family safe.  Our family lives daily on the battlefield of mental health; we have scars and are battle hardened.  My son is a resilient and compassionate sibling, one who even at ten years old instantly understood why and how Robin Williams might consider suicide, what mental illness may have done to his spirit, how it may have touched his family.  My son and I thought about how our family could help other families and we thought up the “Karaoke Challenge”.

Our “Karaoke Challenge” is that people record a video of themselves (and their children if they have some) singing a karaoke version of a song that makes them happy and post it on Facebook.  Then they donate $10 to the Children’s Mental Health Network.  If they don’t want their friends and family to see how horribly they sing, they can donate $100.  Then they have to challenge three of their friends to do the same.  We have also asked that everyone post their videos on the “Where’s Your Ribbon” Facebook site that I have set up for people to show how they are raising awareness for Children’s Mental Health usually wearing the green mental health awareness ribbon.  

My son picked the first song; he and I recorded our karaoke version, challenged six friends (because there were two of us in the video), they have since made their own videos and donations, challenged their friends, etc.  My hope is that this goes viral like the “Ice Bucket Challenge”.  It has put a huge smile on our faces and given us several belly laughs watching our friends attempt karaoke.  I’m not sure, but I think Robin Williams might be proud of this challenge, making people laugh, helping children, and raising money and awareness for mental health. 


About Linette Murphy 
linetteLinette Murphy is the busy working mom of two children.  She has advocated on the front lines for her "complex and interesting" daughter's mental health care needs from emergency rooms, residential facilities, classrooms, inpatient hospital facilities, and even the state house.  She is always looking for ways to help in her community and finds small but meaningful and personal opportunities to improve the lives of children she comes in contact with who are marginalized because of the stigma surrounding mental health in our society. 

The neuroscience of complex problem solving in systems of care: Three strategies for tapping the power of your non-conscious

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problemsolveWhat happens in our brains when we solve problems?  First, consider that there are different types of problem solving in human service system reform.  There is linear problem-solving, which includes problems that have one solution and are usually often better solved analytically.  An example of a linear problem is balancing a budget.  Complex problems, however, have more than one solution and are solved much better with a different kind of thinking.  They require non-conscious thinking.  These types of problems are sometimes referred to as insight problems.  Complex problems are nonlinear vs. linear and are different in that they don’t have obvious solutions or sequential steps to follow.  These types of problems require creativity- the ability to combine information in a whole new way.  Surprisingly to many leaders we work with, rational conscious thinking is not the best way to solve these types of problems. 

Insight 
Complex problems need creative solutions that come to us in the form of insights.  What exactly is an insight?  When we have an insight, as described by Mark Jung-Beeman at Northwestern University, what is not obvious becomes obvious to us.  These are also referred to as A-Ha moments.  They involve non-conscious processing and are at the heart of innovation at the individual, team and systems level.  Insight comes to us suddenly and when we are not putting our focus on the problem.  This is why you may have noticed that some of your biggest moments of A-ha have arrived in the middle of the night, in the shower, while cooking dinner, or when you were driving.  Being able to reinterpret information in a different way and pull together remotely linked ideas to create a novel solution to long standing problems is not something our conscious brain, or prefrontal cortex, is best used for.  It can actually hinder our ability to hear insights, those quiet signals our non-conscious brain sends to us when we make new connections that lead to big ideas. 

To tap into the power of your non-conscious brain, try these three strategies:

  • Decrease anxiety levels
    High levels of anxiety create a lot of noise in the brain and inhibit our ability to have and hear creative insights.  Insights are the result of a very small number of distantly associated brain cells talking to each other.  To compare, deciding what to eat for breakfast involves millions of brain cells having a conversation with each other.  An insight only involves a few thousands of neurons talking to each other.  This is why we have them when our brains are quiet, and activity level is low.   To illustrate, imagine you are hosting a party and a guest knocks at your front door, the music is blasting, and you are out on your back deck enjoying conversation with other guests.  You will probably not hear the person knocking at your front door because the noise level is too high to hear
    the knock.  To be able to hear it, you would need to turn down the music.  It is a similar situation in our brains in that when anxiety levels go up, so does the noise level, making it very challenging to hear quiet signals coming to us from our non-conscious in the form of creative ideas.  The key is to keep yourself and others around you in a positive mood where anxiety and noise levels are low.
  • Break your mental set 
    As noted by Jonathan Schooler, professor of psychology at the University of California in Santa Barbara, to overcome an impasse we have to experience a shift in perspective – a break in our mental set.  It is our natural tendency to project interpretations onto situations based on our past experiences.  Unfortunately, this hinders our ability to see a different perspective that is often needed to move change forward.  To illustrate this, let’s practice right now.

    What do you see in the image below?  Take a few seconds to describe what it is. rabbit 
    Perhaps you see a rabbit?  Or maybe a duck?  Depending on what you initially saw, when you did see the other perspective, it probably came into your awareness unexpectedly, and you thought something like “yeah, I see it now.”  When you are able to see both the duck and the rabbit, you have the ability to shift between the two different ways to perceive the image.

    One of the biggest obstacles to breaking a mental set is analytic thinking, also known as rational thinking.  To solve a problem with insight and creativity, we have to stop trying so hard.  Focusing on the problem and putting effort into finding the solution does not create the mental state conducive to having an insight.  Engaging in analysis with our rational brain constrains our ability to creatively solve an insight problem by further cementing a particular perspective or mental set.  This often disrupts the ability to see different perspectives.  Consider the discovery of the sticky note.  The glue that didn’t stick so well and seemed to have no value at all was considered a problem until someone broke their mental set and realized that a glue that didn’t stick that well could actually be a good thing. 

  • Try taking a step back 
    Sometimes if we want to experience creative solutions to long standing problems, we have to step back so that we can see the bigger picture.  A metaphor to illustrate this is seeing the forest instead of focusing on the trees.  Studies show that people are more able to solve problems if they visualize or imagine themselves in the future solving their problem.   This promotes a form of stepping back which produces more creative ideas.  Studies also highlight that taking a step back from the problem leads to a more systemic global perspective, which helps with seeing the problem from a distance.

    In addition, research tells us that it is much easier to take a global perspective on a challenging situation when we are in a positive mood.  Negative moods are associated with a narrow focus, sometimes referred to as tunnel vision.  When faced with a complex problem, allow your brain to gain some distance from the problem and notice how many more creative ideas bubble up to the surface. 

Implications for Leadership and Organizational Performance 
The biggest problems facing system of care leaders and child and family serving organizations are complex (insight) problems that have multiple ways they can be solved.  Anxiety, perceptions, and conscious rational thinking aren’t so effective for creatively solving these types of problems.  For system of care leaders, if may be extremely beneficial to consider ways to tap non-conscious resources as a strategy for increasing innovation and creativity within their organization.  This is what neuroLeaders do.  They practice flexibility in matching the mental state to the type of problem that needs to be solved. 

If you are interested in learning more about becoming a brain-based leader, click here!

References 
Jung-Beeman, M., Collier, A. & Kounios, J. (2008).  How insight happens in the brain: Learning from the brain.  NeuroLeadership Journal, 1, 20-25.  
Schooler, J.  (December, 2010).  Insight: Getting to ‘aha.’  NeuroLeadership Summit.  Lecture conducted from Boston, MA. 


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. 

Advocates dialogue for meaningful mental health reform, pure and simple

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

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

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

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

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

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scott

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

Reflections on the AOT dialogue

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

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

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

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

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

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

Breaking the cycle of violence and suffering 

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

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

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

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

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

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

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

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

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

We came, we spoke, what now?

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

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

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

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

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

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

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

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

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

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

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


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brian

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

Dialogue on AOT uplifting, enlightened, and hopeful

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

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

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

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

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

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

Youth advocacy take on assisted outpatient treatment

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

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

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

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

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

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

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

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

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