Mental health reform: We can't wait for politicians to do it for us

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Back in August, when we first conceptualized the idea of the dialogue series, it was in large part based on the encouragement from a Politico article in June that stated that a bipartisan group of House lawmakers were looking for compromise mental health legislation between the two bills in the House (HR 3717 & HR 4574). In the Politico article, Rep. Tim Murphy (R-Pa.) expressed hope that common ground could be found on his Helping Families in Mental Health Crisis Act, which he introduced late last year. And Rep. Ron Barber (D-Ariz.) expressed similar optimism for his bill, which was introduced six months after Murphy’s. According to news reports, the negotiations would begin during the July recess. 

Of significant concern to the Children's Mental Health Network was the fact there was very little discussion of the impact of these two bills on the children's mental health community (including emerging adults up to the age of 26). This vacuum in the conversation about children's mental health reform encouraged us to begin a dialogue with advocates, families and providers, figuring that if members of Congress were going to do it, we should as well. 

Alas, here we are in late October, and still no apparent discussions between the offices of Representatives Murphy and Barber. The lack of conversation between these two congressional offices is a disappointment for sure but also serves as a reminder that we can't solely wait and hope for politicians to lead the way on this issue. Now more than ever, with Congress reconvening soon, we need to come together and seriously look for compromise opportunities in HR 3717 and HR 4574.

Let's keep in mind three central points:

  • Members of Congress are not all-knowing Gods. They are hardworking, dedicated public servants. 
  • Members of Congress rely on staff who are equally dedicated, smart, and hardworking to draft language that ends up in any bill. 
  • Legislative staff rely on advocates who are also equally dedicated and passionate to provide comprehensive information to help them craft meaningful legislation.

If we in the advocacy community have difficulty talking to each other then how can we expect congressional members and their staff to do what we will not? 

Fortunately, if you look, you can see positive signs pointing towards dialogue everywhere. We were thrilled to see a great article on dialogue written by Patrick Hendry, Mental Health America, which captures our dialogue process quite well. In addition, Ron Manderscheid, National Association of County Behavioral Health and Developmental Disability Directors writes eloquently about the importance of building bridges between those who support HR 3717 and those who support HR 4574. 

  • Keep writing, keep talking Network faithful. Small steps lead to big victories.

Our dialogue series has produced fruitful discussion and a beginning of broadening the conversation around what could and should be included in the framing of the best of the HR 3717 and HR 4574. Our initial dialogues have been around Assisted Outpatient Treatment (AOT) and already, illuminating factors have come to light. For example:

What do we know about how AOT works?
Assisted Outpatient Treatment is on the books in 45 states, yet we have not been able to find one study that describes how AOT is being used in the 45 states that currently have that provision. Specific examples, yes, but not a thorough national review. Amidst all of the highly charged emotions around AOT, not one comprehensive study showing how states are using it. A national review of AOT is much needed.

In our dialogue series, we have heard from providers in Virginia and the District of Columbia. Each has significantly different requirements in their respective AOT laws. And that is just the two examples that we have focused on. Imagine if we knew how the other 43 states were using the AOT law. That knowledge and understanding of implementation challenges would enhance the discussion around the type of services and supports that federal government should be emphasizing with their funding efforts.

Why is this important? 
It is one thing to say a particular process like AOT must be in place to improve mental health services in America. However, understanding what happens beyond the initial act of ordering treatment, is what makes or breaks the relevance of any legislation passed.

  • It is our responsibility to shine a light on this issue. Let's not wait for Congress to do it in isolation.

Services and supports that are provided once the AOT process is in place sure do look a lot like what we see promoted by the Recovery Movement.
In our last dialogue, we focused on the process of AOT and asked the question - "What happens after implementation of the AOT process?" In response to our question, providers spoke of the need to find appropriate housing, peer-related services and supports in addition to inpatient and outpatient treatment. 

Providers in the dialogue spoke about the importance of community, health, and peer support as integral components of a comprehensive approach to treatment for those involved with AOT. My mind raced to one of the intense discussion points of HR 3717 - the questioning of the value of some SAMHSA funded programs. Particularly beat up in editorials and stump speeches over the past year has been SAMHSA funded efforts such as the Alternatives conference, which promotes a peer-directed approach to recovery for those with serious mental illness. Yet, listening to these providers talk about the importance of community, health, and peer support for those involved with AOT I was reminded once again that the two "opposite sides" actually have more in common than they might think.

For yet another great example of synergy, a recent NIMH study of First Episode Psychosis programs found that elevated risks of heart disease and metabolic issues such as high blood sugar in people with first episode psychosis are due to an interaction of mental illness, unhealthy lifestyle behaviors, and antipsychotic medications that may accelerate these risks. Recovery folks are all over the importance of a healthy lifestyle. Treatment advocates and recovery advocates need each other. The "science" is proving that again and again. Just sayin'.

Network faithful will remember the Morning Zen post - The Power of Words: What the Wall Street Journal didn't tell you - written after a particularly scathing editorial in the Wall Street Journal, excoriating SAMHSA for funding what the authors of the editorial perceived as a waste of money. If you revisit the Power of Words Zen piece you will see why it is so important to peel the onion of any soundbyte you hear about meeting the needs of the seriously mentally ill. Not only is it more complicated than any one-liner, if you talk to providers and families involved with the process you will begin to see more similarities than differences when discussing what is needed to improve mental health services in America.

But what about the core issue of forced treatment?
I have no idea if there will ever be consensus around the issue of forced treatment in the AOT debate. Given that AOT is on the books in 45 states, can we at least "park" the forced treatment question to talk about what can be agreed upon as important to include in mental health legislation that combines the best of both bills? We've gotta start somewhere folks.

I hope you will join us at our next dialogue in Washington, DC on November 21st from 9 - noon in the Cannon House Office Building. We are blessed to have a courageous parent who has recently gone through the AOT process who will be with us to talk about her experience, what worked and what did not. In addition, we will be reaching out to national advocacy groups who are based in the Washington DC area to see how they can be more involved in collaborating together, even though they may be diametrically opposed in their positions on AOT, HR 3717 or HR 4574. 

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scott

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

 

Response to Dr. E. Fuller Torrey regarding progress in recovery

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Ron Manderscheid, Executive Director of the National Association of County Behavioral Health and Developmental Disability Directors, responds to a recent comment from Dr. E. Fuller Torrey that criticized SAMHSA's National Wellness Week. Dr. Manderscheid does an excellent job of modeling the art of creating bridges to those with vastly divergent views. 

Morning Zen Guest Blog Post ~ Ron Manderscheid ~ 

I write this commentary in response to the recent comment published in National Review from Dr. E. Fuller Torrey. This response is from the National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD), the National Association for Rural Mental Health (NARMH), and from me personally.

As my former colleague at the National Institute of Mental Health (NIMH), Dr. Torrey knows that we have been searching for effective interventions and solutions to the problem of serious mental illness for more than six decades. Work in this area extends from NIMH, to the other Institutes in the National Institutes of Health, to the Substance Abuse and Mental Health Services Administration (SAMHSA), and even to the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC).

I am exceptionally pleased to report that significant progress is being made:

Bringing Life: My own research shows that persons with serious mental illness are much more likely to have chronic physical illnesses than other people. Tragically, this research also shows that they die 25 years earlier than others as a result of these chronic illnesses, such as heart disease and diabetes. Wellness initiatives are an exceptionally important effort to confront this issue head-on. Persons with serious mental illness do not want to die in their early 50s; hence, they have embraced wellness efforts with great enthusiasm. National Wellness Week is intended to promote broad national efforts to confront these life threatening diseases. Current national initiatives under the Affordable Care Act to integrate mental health, substance use, and primary care services are another dimension of this ongoing work.

It also is very important to point out that such wellness initiatives are not restricted to the mental health field or to SAMHSA. The US Department of Health and Human Services and CDC endorse and promote wellness efforts. Further, many corporations have undertaken wellness initiatives for their employees and family members. Finally, many individuals engage in wellness activities every day, including running, yoga, and other exercises.

Bringing Recovery:  As Dr. Torrey knows, we did not use the word "recovery" in the mental health field until almost the year 2000. Now, people with schizophrenia and other types of serious mental illness understand that they can engage in an ongoing process of recovery to regain a full life in the community. This is new, very new, and it is exceptionally important. In part, it results from our new understanding that the majority of mental illnesses are due to personal trauma rather than brain disease. SAMHSA has played a very significant role in developing the tools of trauma informed care and recovery. In my own work with the counties, I see the positive effects of this work every day among those with serious mental illness who have been able to regain their lives as productive citizens in the community. 

Bringing Hope: More than a quarter century ago, while Dr. Torrey and I were still at NIMH, a middle age person with serious mental illness once told me, "You people have driven hope out of me." That comment has always stuck with me. Today, I would be delighted to tell that person that we have been able to rekindle hope. As we develop the capacity to prevent early death from chronic disease, and as we develop the capacity to provide help on a long-term trajectory to recovery from serious mental illness, then, indeed, one can have hope. Much of the credit for the rekindling of hope is due to the work of SAMHSA over the past two decades.

As Dr. Torrey also knows, we still have many service issues confronting us. These include the need for a capacity to provide early recognition of signs and symptoms before mental illness becomes severe, reducing the stigma of mental illness so that people are willing to seek care when needed, the development of advance directives for use when a person is incapacitated, reducing the prevalence of persons with mental illness in jails and prisons, among others. Addressing these issues will require the very best efforts of SAMHSA, NIMH, and all of the agencies in the US Department of Health and Human Services.

In all of our work, it seems very clear to me that we definitely do not want to go down legislative paths that will undo the wonderful progress that has been made over the past quarter century. That would be quite tragic. Therefore, we oppose the Mental Health Bill introduced by Representative Tim Murphy (R-PA) in its current form. We support the Mental Health Bill introduced by Representative Ron Barber (D-AZ) because it will advance the work described above. We do hope that Representatives Murphy and Barber will work together collaboratively to produce a single piece of legislation that we all can support.

I encourage Dr. Torrey to work collaboratively with me and others to continue to move our field forward. Much can be done in this era of the Affordable Care Act. We hope that Dr. Torrey will join us.

As full disclosure, neither NACBHDD, nor NARMH, nor I receive any funds from SAMHSA or its components.  

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manderscheidRon Manderscheid, Ph.D., serves as the Executive Director of the National Association of County Behavioral Health and Developmental Disability Directors. The Association represents county and local authorities in Washington, D.C., and provides a national program of technical assistance and support.  Concurrently, he is Adjunct Professor at the Department of Mental Health, Bloomberg School of Public Health, Johns Hopkins University, and Immediate Past President of ACMHA—The College for Behavioral Health Leadership. Dr. Manderscheid serves on the boards of the Employee Assistance Research Foundation, the Danya Institute, the FrameWorks Institute, the Council on Quality and Leadership, the International Credentialing and Reciprocity Consortium, and the National Research Institute. He also serves as the Co-Chair of the Coalition for Whole Health. Previously, he served as the Director of Mental Health and Substance Use Programs at the Global Health Sector of SRA International and in several federal leadership roles in the U.S. Department of Health and Human Services. Throughout his career, he has emphasized and promoted peer and family concerns.   

 This post originally appeared in Behavioral Health Care and is reprinted here with permission of the author.

NeuroLeader Master Class - Behavior change ain't easy

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pictureGreetings Network faithful. As promised, here is my first journal entry chronicling the first two weeks of my participation in the NeuroLeader Master Class being conducted by the effervescent duo of Paul McFadden and Laurie Ellington of Zero Point Leadership.

You can read about the course here.

My, my, my... where to begin...

1st orientation call 
I was impressed with the materials sent to me in advance of the call. The Master Class Participant Manual is comprehensive and well organized. Plus, I have a nifty emWave2 which I can't wait to try out. The group I am in is a mixture of health professionals, including a fellow Network faithful. Whoop to the whoop on that one! 

After introducing ourselves to each other Paul and Lori walk us through the course, what we can expect and what tasks to focus on first. Oh man, can't wait to get started on this exciting journey!

After the call
Oh wait, you want to know what happened after the call? Hmmm... Well, I got busy, and promptly turned my attention to the million other things that I tend to let dominate my life. Tuesday became Wednesday, and Wednesday became Thursday.

Thursday reminder
And then on Thursday evening this email pops up, full of encouragement and a reminder to set my intentions, review my progress... Oh boy. I stop what I am working on (Friday Update), pull out the manual and speed ball the assignments.

I can hear Laurie and Paul groaning as I write this. Well, more like encouraging, nudging, and reflecting on how to make this successful. Curse you positivity! 

Joys of the second week
We are now into the second week, and our faithful leaders have thrown us another positivity curve - group coaching. You know, where participants in the course work with each other discussing the exercises, supporting each others development, offering encouragement and support. But wait a minute! I am still like a whirling dervish, with a schedule that defies reason, leaving me feeling like the guy who spun plates on the Ed Sullivan Show (look it up, youngin's). Oh no, another speed balling of the assignments before a 4 pm call with my peers. Arrgghh!!!

Reflections so far
When I agreed to journal my experience with the Neuroleadership Master Class, I had a sense my initial entries would look something like what I have written. I know myself fairly well, and I do love to flit about, as they say. But what I didn't expect was the underlying forces at work, that are gently massaging my senses, speaking to me softly about taking some zen time for myself. The darned blog is called "Morning Zen" for goodness sakes!

The biggest impact so far is the subtlety of the approach. Behavior change ain't easy and whompin' me over the head with it won't work. And this experience is anything but a whomp on the head. This leadership experience is more like the feeling you get when lying down on a lake shoreline, where the gentle waves rhythmically lap at your feet, reminding you with each warm splash of water, of what is most important.

No reading stories of high flying "leadership" from such luminaries as Jack Welch or Lee Iacocca (we all know how that one worked out). Just a gentle focus on the power within all of us to make a significant change in our approach to the world.

Next steps
A call with my peers today where I will be honest about the journey so far. I'm thinkin' this is shaping up to be a 'tortoise and the hare' story. Stay tuned Network faithful. And be sure to send along some positive intentions!

One final note 
The readings and exercises so far are focused on the messages I send to myself, and I will say they are beginning to enter my consciousness on a more regular basis. But it will be a journey, which is why I love the fact that this is a multi-week experience. When I think of the leadership experiences I have gone through before, with case studies, lessons from successful leaders, all crammed into a few days, no wonder that type of approach tends not to have a lasting effect. True change takes time, and ya gotta let it simmer if it is gonna taste good when it's time to eat!

And finally, a tasty treat for Network faithful
Since one of the areas of focus for me during this course is sleep (since I tend not to make that a priority), here is some food for thought on the subject:  

A Family's Growth Behind Bars

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Morning Zen Guest Blog Post ~ Daniel Bowes, JD, child of a formerly incarcerated parent ~

In my second year practicing law, I stood before a room full of young men imprisoned at Polk Correctional Institution in Butner, NC, and experienced a powerful moment of reflection. I was at Polk to discuss available legal services responsive to the barriers to reentry these young men—all between the ages of 19 and 25— would confront upon their release from prison.

While I arrived at Polk early in my legal career, I had presented on the issue of reentry dozens of times—to employers and directly-impacted individuals, on television and radio, in court rooms and statehouses and churches. I should have been comfortable and confident. And yet, as I opened my mouth to speak to those young men, I felt my face turn red. My hands began to sweat and shake. I could not recall a presentation I knew by heart. After a few false starts, I stumbled through my usual introduction before embracing the gravity of this full-circle occasion with words that had the tone of a confession, “I am the son of a man who sat in one of those same seats 30 years ago—he was 21-years-old, had multiple felony convictions, and was about to be released from Polk.”

Even today, having literally spent tens of thousands of hours speaking out on behalf of individuals striving to move beyond their past mistakes, it is often difficult to find the voice to identify myself as the child of a formerly incarcerated parent and effectively convey the complexities of the attendant experiences and emotions.

I was first introduced to my father during his imprisonment. A picture shows me sleeping in my father’s arms, dressed for the occasion in a red suit and bowtie. But he was paroled when I was still very young and so I have no real recollection of his incarceration. Accordingly, I did not grow up seeing my father through bars or separated from him by great distances. Instead, I experienced the less familiar but, in many respects, no less harsh aspects of his segregation. As is common, the long and destructive reach of the collateral consequences of his criminal convictions defined my childhood experiences more than anything else, impacting not only my family’s access to resources and opportunities, but also how we viewed ourselves and our place in the community.

It has taken many years of maturation and reflection for me to gain a sense of just how much my father’s scarlet letter maligned our relationship. Growing up, I witnessed my father’s struggles through a very narrow purview and with very little context—and so I watched without really seeing. Indeed, my reexamination of my early experiences is akin to the exercise of an attorney coaxing from an eye witness a truth obscured by bias and misinformation. I would see my father go to work every day and return home tired and detached—I would feel dejected when he said he didn't have the energy to play with me. I didn't understand the significance of him simply being there, having chosen to leave behind old associations and vices in order to dedicate himself to our family. Nor did I realize the exhausting and dangerous nature of his work—excluded from many employment opportunities, he worked for many years in steel fabrication. Similarly, I was there when my family moved from a dilapidated trailer to a brick bungalow but didn’t recognize the fortitude and sacrifices that forged that path. I was merely glad that kids could no longer make fun of me as trailer trash—at that time or ever before, I did not find comfort in the fact that none of my classmates actually realized I lived in a trailer.

Even in a new home and a new school, I never invited friends over. By that time, I had become keenly aware that I should be ashamed of my father. First from television and then from newspapers and conversations, I gathered that he was of a class of people—labeled felons, ex-cons, criminals—who had done things that were so bad that it meant they were bad people. Throughout my childhood and early adulthood, this scarlet letter alienated me from my father’s embrace and obscured his incredible strength and dedication from my view. And yet, even confronted with such antagonism in his own home, his dedication to our family’s welfare never wavered.

For as long as I can remember and still today, he and my mother have consistently told me that I could achieve whatever I aspired to do. At 17, I graduated high school and left Burlington, NC, to attend Duke University, thinking I would never return. Fortunately, the more I experienced the world, the more I grew to appreciate the family I left behind. For all it gave me, Duke was not the passage to the promised land I had envisioned—it couldn't be. Given occasion as much by my feelings of insecurity and indecision as the common college experiences that grow one’s perspective, I often reflected on the nature of my childhood experiences and my relationship with my parents. These reflections continued into law school as I began working with incarcerated and formerly incarcerated individuals. I vividly remember, for example, teaching a legal research skills course to women incarcerated at Bedford Hills Correctional Facility in New York and hearing the women talk about how difficult it was to be separated from their children. Hearing their resolve to do better in order to be there for their children, and knowing that my father had achieved that only to be rebuffed by me was, at once, devastating and enlivening. Over the years, such experiences and the reflections they inspire have incited me to learn more of my father’s experiences in prison and his struggles with reentry. After much time and effort, our relationship is now one of acceptance, trust, and mentorship—I now recognize him for the pillar of strength and model of integrity that he has long been.

Standing before those young men at Polk, I was cognizant of all of this at once. Looking out into that crowd of youthful faces, I was besieged by feelings of pride, gratitude, and shame. Coupled with these emotions, though, was a prevailing sense of hope—hope that I could continue to build my relationship with my father and that those young men would soon return to their families and provide the same strength and support to their children that my father provided to me. 

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bowesDaniel Bowes, the child of a formerly incarcerated parent, is the supervising attorney for Legal Aid of North Carolina’s Second Chance Employment and Housing Project and also a staff attorney at the North Carolina Justice Center. He serves as the Co-Vice Chair for Our Children's Place.

Fostering resilience, easing transitions: Learning from Third Culture Kids

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I’ve been invited to the gathering as a guest speaker. Another group has come together to discuss what it is like to grow up global. Another group of parents is embarking on an  international relocation. Their decision has been made, but they want to know more, there are issues still left to discuss.

The meeting focuses on international mobility from the child’s perspective. I join some others who have spent childhoods away from their countries of origin, and we talk about our experiences being raised cross-culturally, growing up among expatriates in the global stream. The audience nods in understanding, smiles as we describe the benefits their children will reap, laughs at the silly mistakes we’ve made and learned from, grows serious when we talk of the grief inherent in saying goodbye so frequently to the places and the people we have loved.

And then, the inevitable question:

  • Will this experience -- moving away -- be good or bad for my child?

And I wish there were an easy answer.

tcktrainSo much depends on the child, and the parent, and the circumstances of the relocation. What do we tell our children as they, and we, face a major life disruption like moving away from home? How can we be sensitive to their needs while we are busy unravelling the old and weaving the new connections we need to move on?

Children are expected to be resilient in the face of change, and manage transitions easily. But some people are resistant to change, and don’t know how -- or don’t want -- to “go with the flow.”

In a world where frequent residential mobility is fast becoming the norm, how do we best prepare children for moving on? How do we foster the resilience they need to adapt to changing circumstances? How is the need to belong, the need for connection, met among the unrooted?

There is much to be learned from generations of border-crossing Third Culture Kids, whose lives, though filled with rich experience, also consist of repeated cycles of moving and repeated cycles of loss. The moving from place to place, country to country. The loss of these places and countries, and of friends, family, community. The loss of home.

Many of the sponsoring organizations that send employees and their families abroad -- the military, diplomat and business communities, missionaries, educators and others -- have programs in place to help families in transition. There are relocation services, counseling, pre-assignment coaching and meetings. There are books, many of them valuable, that aim to teach resilience to people of all ages.

But as I read these books and pamphlets, filled with information about developmental stages, goodbye rituals, writing prompts, suggestions, I see that none of them can answer that first, most important question of all, and the one that is most frequently asked:

  • Will this be good for my children?

So I tell them what I’ve learned:

Most adult TCKs, looking back on the worlds they discovered in their young mobile lives, claim they would never trade their childhoods for any other. They say the enrichment they experienced outweighs the challenges they endured. This, despite the fact that many have suffered adjustment problems, unresolved grief, identity issues, experiences that have tested their mettle at a very young age.

I tell them, there is more in place now to prepare yourselves and your children for relocation than there ever was. Take advantage of it -- do the work in advance that will smooth the transition for your family.

I tell them, continue your involvement after the move. Learn the language and the culture of your new home. Create an environment of openness and support and free communication. Encourage independence and problem-solving skills. Build bridges to new friends, create connection between your old life and your new with repeated rituals. Bring along some favorite objects. Stay sensitive -- your child will not be feeling the same emotions you are. Be aware of transition red flags:  withdrawal, refusal to cooperate, anger. Seek professional help if you need it. Keep the conversation open.

And above all, listen. Listen when your child comes to you with fears, and don’t brush them away -- teach him how to manage them. Listen if your child expresses unhappiness, and acknowledge it before trying to cheer him up -- allow him time to grieve his losses. Listen when she tells you her experience, which is different from yours. Listen and encourage as your family heads off on this new adventure. This may be one of the richest and most rewarding times of your lives. 

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Nina Sichel is co-editor of the collections Writing Out of Limbo: International Childhoods, Global Nomads and Third Culture Kids (2011) and Unrooted Childhoods: Memoirs of Growing Up Global (2004). She leads memoir-writing workshops in the Washington, DC area and continues to collect stories and research about international and cross-cultural childhoods. She can be reached at nsichel@yahoo.com.

Rethinking Wraparound: Hello, Help, Healing and Hope

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Morning Zen Guest Blog Post ~ Patricia Miles, Mary Jo Meyers, John Franz ~  

Proposing a New Construct to Support an Evolving Understanding of the Wraparound Approach 

Raise your hand if you’re a bit confused about what Wraparound is these days. Don’t be shy. Lots of people are wondering the same thing. And don’t be embarrassed. The fact that there are a number of different interpretations and descriptions of what Wraparound is and how it is carried out can be a good thing. It means the model still has the energy it needs to keep on evolving. On the other hand, it also means that in the Wraparound house there are many definitions.

The goal of this article is not to describe a specific version of what Wraparound practice should be – as if there was only one answer to that question, but rather to propose a new construct to help Wraparound practitioners hone their approaches and improve the impact of their efforts to assist families.

There is no Wraparound bible. Wrap does have a sort of Ten Commandments in the form of its core values, but they don’t describe a specific practice model, only what every model should strive to achieve.1 In fact, even with the range of usual and customary values lists, communities make a range of choices about what values are highlighted. The values list associated with Wraparound has been as high as 25 statements.

Wraparound does have a Canon, a collection of stories and articles, training manuals and statutes, contracts and evaluations that have been accumulating in nearly every state and province in North America over the four decades since the foundational programs on which modern Wraparound practice is based first began operation.

No one has the entire Canon, both the oral tradition as well as the written components, but some of us have been privileged to be a part of many of the episodes of Wraparound design and implementation that have occurred over the years and across the continent. It is from these experiences, and from trying out earlier frameworks, that this new iteration has grown.

Defining Wraparound

One of the great delights of Wraparound is that it tolerates a variety of definitions. A stock definition from the oral Canon is that Wraparound is “what we do when we don’t know what to do and how we get it done together.” There is a Wraparound entry in Wikipedia that begins, “The wraparound process is an intensive, individualized care management process for youths with serious or complex needs.”

The National Wraparound Initiative website defines Wraparound as “an intensive holistic method of engaging with individuals with complex needs (most typically children, youth and their families) so that they can live in their homes and communities and realize their hopes and dreams.”  The NWI website goes on to state: “Since the term was first coined in the 1980s, ‘wraparound’ has been defined in different ways. It has been described as a philosophy, an approach and a service. In recent years, wraparound has been most commonly conceived of as an intensive, individualized care planning and management process. Wraparound is not a treatment per se. The wraparound process aims to achieve positive outcomes by providing a structured, creative and individualized team planning process that, compared to traditional treatment planning, results in plans that are more effective and more relevant to the child and family.”

In the spirit of the continuing evolution in our understanding of what Wraparound is we have developed an updated definition that reflects a slightly different point of emphasis: 

  • Wraparound is a process used to support families by bringing a group of people together as a team to help families accomplish the goal of living together safely and productively by planning and delivering services that build on family strengths and meet the needs that have been identified with the family as being essential for achieving positive outcomes. 

This variation on the definition of Wraparound is designed to bring a stronger focus on the family, without losing sight of the specific treatment and support needs of particular family members. It also puts the goal of reinforcing or re-establishing the integrity of positive family relationships front and center.

Over the years there have been frequent attempts to categorize Wraparound as a service in the sense of a being a specific kind of treatment or intervention. One or both of two interests, research and funding, drive these attempts. Given the widespread use of Wraparound and wraparound-like practice approaches, many researchers have wanted to find out whether or not helping children and families in this way works. Although initial implementations of Wraparound have frequently been supported by grant dollars, for programs to continue agencies eventually need to find some way to pay for using Wraparound.

Testing the benefits of Wraparound by itself, as if it was a new medicine that was being researched, is difficult because Wraparound is only one component of an agency or program’s system of care. So really what’s being measured is whether a program that includes the Wraparound process is helping children and families achieve better outcomes. Early, large-scale studies were ambivalent at best about the achievements of some of these systems of care. More recent studies that focused on smaller programs, some of which had control groups, have shown that programs using some form of Wraparound practice to guide service planning and implementation have demonstrated much better outcomes than the controls.

The challenge with saying that this newer research proves that Wraparound works well, or that the older research says that it doesn’t is that there are many more variables in play than just the way child and family teams are gathered and facilitated. Nonetheless many people are trying to demonstrate that Wraparound is an evidence-based practice in the same genre as the various three-letter acronym practices like Multi-Systemic Therapy, Anger Replacement Therapy and Functional Family Therapy.

But as the NWI website states, Wraparound is not a service in the sense of a particular type of intervention or treatment.3  Instead of a service, Wraparound is a planning and organizing process that is designed to bring helping people together with families who need help so that together they can plan for, access, create and coordinate an array of services, interventions and supports tailored to each family and its unique situation.

But that makes it a problem to find ways to pay for programs and agencies that want to continue to use the Wraparound practice model after the grant money runs out. If you can’t define it, and it isn’t a service, how do you bill for it? The answer is that programs and agencies that have continued to grow and do well after their start-up grants ended bill for delivering good services and use an implementation of the Wraparound approach to insure that their services are well-matched with the needs of the families who are enrolled in their programs.

The vibrant energy that comes from providing help and assistance the Wraparound way leads some people to want to define Wrap in much broader and more inclusive terms than a simple process based on some powerful core values. But this combination of simplicity combined with well-articulated values is what gives Wraparound the flexibility to be useful in a wide range of services modalities, and to evolve and improve as our understanding of what works and doesn’t work in human services continues to advance.

However, although it is a simple process, it is still a process and figuring out how to describe, teach, supervise and evaluate this process continues to be a challenge that confronts every program and agency that uses Wraparound as the central engine of its operations.

Doing Wraparound

Our understanding of the Wraparound process has evolved over the years, starting with a series of steps for conducting child and family team meetings but then expanding to a larger framework of phases that defined the overall relationship between a program using the Wraparound approach and the families who were enrolled in that program. 

Wraparound’s Planning Steps 
Around twenty years ago when Wraparound was first being implemented, the process was described as a set of planning steps that practitioners should follow during meetings with a range of providers, community members and family members and friends. These steps were presented as 8 core activities that were supposed to occur in every team meeting, including starting with a review of the family’s strengths, reaching agreement about the nature and priorities with the family and other team members about needs to set a target for the team’s activities, going through a creative process to design imaginative responses to those prioritized needs, and, finally, getting team members to commit to action.

Over time the original 8 steps expanded to 11 items as it became clear that just having meetings wasn’t enough. Instead, a range of activities outside of meetings also needed to occur. These additional steps began to describe meeting preparation activities as well as service coordination and crisis response activities that would come up between meetings. 

The Phases of Wraparound 
About twelve years ago it became clear that not only was Wraparound about more than just team meetings but also that it was more than a set of tools that an individual practitioner might use in her or his work with families. The more mature programs and agencies were beginning to realize that a Wraparound orientation was something that informed the activities of many different staff and carried over throughout the relationship with each family that was enrolled for care. Not everyone interacted with families through the team meetings, but everyone should structure their actions in the context of the values of Wraparound and the effort to develop, implement and improve the plans for assistance that were generated through those meetings.

To help everyone who might be involved with a program or agency that was helping families using the Wraparound approach understand what was going on, why they were operating that way, and how their specific activities fit in with the big picture,  a framework called the Phases of Wraparound was proposed.

These phases were intended to help both families and agencies visualize the arc of care that a family would experience as they received help through a program that used the Wraparound approach. The four phases were engagement, planning, implementation and transition.

  • Engagement: Typically used to describe actions, procedures and processes during the first 30 days of a Wraparound response, activities during this phase were designed to establish a firm foundation of understanding and partnership with the family as well as creating a sense of enthusiasm, optimism and collaboration among all team members. 

  • Planning: This phase reflected the first meeting together of all stakeholders to develop an initial plan of care that all parties could agree with and commit to implementing. Generally as implemented this phase was designed to last for one or two meetings during which the group gathered with the family, reached agreement and developed specific levels of crisis contingency in the event that unplanned events took place. 

  • Implementation: During this phase, the length of which would vary with the needs of the family, the relationship with the family shifted from planning to doing and a wide range of intensive services and supports targeted to each family’s specific strengths and needs would be deployed. These services, which while not Wraparound themselves, would still be delivered in the context of the Wraparound planning and organizing process. Staff from the coordinating agency might provide some of the services and supports, some would be delivered by other agencies or individuals in a network accessed through the Wraparound process, and many would be offered by community, informal and natural supports unique to the family. But the Wraparound team, including the family members, would assess the impact of all of these efforts and adjust, adapt or modify the service and support response to make it more effective. 

  • Transition: This phase was designed to articulate a set of activities and rituals to insure that when families exited Wraparound this was done with the same care and attention to detail as the engagement, planning and implementation activities.

Using the Phases framework to sort out the ballooning range of activities that took place when programs and agencies using the Wraparound approach assisted families initially proved to be quite helpful. However, over time some difficulties began to emerge.

The articulation of phases did help practitioners and funders understand that Wraparound was more than hosting a series of meetings that started with strengths, but the phases still sounded like discrete steps rather than intersecting components of a dynamic and adaptive relationship.

Engagement, for example, is an ongoing and iterative process that occurs through a series of trust transactions between a care coordinator and family over time rather than a set of techniques that produce a specific moment when families are engaged.

Having a planning phase has also been tricky in the real world of helping families who are often experiencing difficult disruption and destabilization at the time of enrollment. They need a quick, front-end response that keeps people safe and gives them enough room to work on bigger issues. Programs that applied the Phases framework too rigidly sometimes made families in great need wait while care coordinators went through rituals of structured engagement and planning. On the other hand, programs that put everything into the front-end response also had trouble moving back into engagement and planning in order to develop a comprehensive plan that would support long-term gains.

Although the implementation phase was intended to frame everything that took place as help was being provided to families over time and adjusted to improve its  fit and effectiveness, in some places it took on a different connotation. Programs focused on their efforts to implement the various steps of wraparound planning rather than using the Wraparound approach as a way to access services, supports and interventions. At the extreme end, this has led some sites to present Wraparound as an alternative to other sorts of help. Families were then forced to choose between an intensive service such as hospitalization or placement and enrollment in that site’s wraparound program. Wraparound was designed to help all services in a system of care work better and faster.  A well-structured site using the Wraparound approach avoids withholding any services from the family enrolled in Wraparound or even presenting Wraparound to a family as a discrete program or service. It’s not a question of “Do you want placement or Wraparound?” but instead if you elect to use placement how can Wrap make that strategy most effective in meeting needs to produce better outcomes for the family in the shortest amount of time.

Even the use of the transition phase concept raised difficulties. The idea of the transition phase was to capture the sense of increased self-efficacy that families should be experiencing as they, with the team and their circle of support find better coping strategies, improve their relationships with one another, and in general get back on their feet again. However, in some programs transition became something families earned in order to get out of the system. And in others transition was something imposed on families when their funding eligibility ran out.

Not only did the articulation and implementation of each of the phases gradually run into difficulty over time, the phase framework as an overall construct also began to show some weaknesses. First, it was difficult to convey the sense that these phases were not discrete and time limited but instead were overlapping, iterative and adaptive. Second, the most promising programs tended to be evolutionary and aspirational rather than fixed and repetitive. These sites weren’t willing to confine themselves to the constraints that the more rigid applications of the Phases framework were beginning to impose. As a result, a number of wraparound trainers have begun to refer to the engagement, planning, implementation and transition as integrated components of the helping response rather than phases.

Finally, the phases were written from the point of the view of the practitioner or the program rather than the family. This can result in a project “managing” a family in order to achieve the outlined goals for each phase. While it can be argued that the goals outlined in each of the phases are critical to success and are strongly family- focused,4 one of the key tenets of wraparound is that the family’s experience is definitional. So if using the Phases framework has begun to impede the implementation of innovative and family-driven practice in some situations, it is probably time to evolve to a new construct that captures what has been learned during the last dozen years of using the phases. 

4phases

Family Focused Description

We believe that a new construct built on the strengths of the Phases framework, but designed to overcome some of its limitations will be helpful to practitioners. Families being helped by programs or agencies using the Wraparound approach should experience a sense of positive growth that emerges over time with all the natural ups and downs that accompany human relationships.

Hello 
The foundational experience entering a Wraparound experience involves a sense of being welcomed which sets the stage for enduring equal partnership. In the emergent view, this basic element of Wraparound is called “Hello.” We believe this more accurately represents the family’s experiencing of entering the process and that engagement is usually an agenda or goal of the practitioner rather than the family. This simple word conveys the experience of being greeted and appreciated that families deserve to feel as they enter Wraparound.

If we think about how we design and operate our programs and agencies, we can begin to evaluate every component from the physical structure, to staff roles, to the service array, to the process steps in terms of the degree to which they help families experience an initial and ongoing sense of welcome and inclusion.

Individuals practicing in a Wraparound model are expected to simultaneously provide comfort while quickly gathering enough information to assemble a helping response on the foundation of the initial greeting. This is also when staff who are interacting with the family take the time to listen to and seek to understand the family and their concerns and confer with the family on what is likely to be the most helpful for them in their unique circumstances. 

Help 
If hello replaces engagement as the foundational concept in this new construct for Wraparound, we asked ourselves what should replace planning? We decided to re- label this concept as “Help” for several reasons. We noticed that some programs using the Phases framework were carrying out a wide variety of rituals around planning and producing lots of plans, but often we didn’t see purposeful help and interventions flow from those rituals and plans.

Families with complex needs are usually more interested in getting help than in a completed plan. While planning rituals and meetings will be held in a Wraparound process, the point is not to complete a plan but instead to insure that effective help  in the form of individualized strategies, supports and interventions is provided. A Child and Family Team is not the intervention but is the way that decisions get made about the range of interventions. Those interventions should be documented in a comprehensive plan of care format but it’s important to never lose sight of the fact that services and supports actually must be provided to produce outcomes. Holding a series of “wraparound meetings” without building the capacity to provide purposeful actions between those meetings is not likely to yield good results.

Individuals, programs and agencies using the Wraparound approach to structure their operations should be able to evaluate themselves directly by the way in which families access and experience timely, relevant and well-targeted assistance.

Healing 
Replacing implementation with the concept “Healing” reflects our commitment to delivering help that is useful and produces outcomes that families value.  We believe that not only do families have a right to action but also that these actions should make a difference.

Healing is our attempt to capture the difference between a family’s experience of having things being done to them and feeling like the help the family is receiving is having a positive impact on their situation. Implementation speaks to action. Healing speaks to action with a purpose and outcome in mind.

First attempts at helping are frequently awkward and off target. But as relationships with families grow and understanding of the family’s identity, preferences and history deepen helping activities can be adapted. This is an ongoing process that occurs until the help provided becomes not just a thing to implement but instead becomes the right thing to do for families to experience a sense of healing.

Individuals and agencies incorporating this concept in their operations will become more outcome-driven, establish reliable feedback loops for real-time recovery of data about how families are experiencing the help they are receiving and the progress they are making, and develop innovation cycles that use this information to improve their practices and programs.

Hope 
Transition means things are changing, but doesn’t necessarily mean that they are changing for the better, even if that was the intent when the fourth phase was given this label. Re-examining our goal for what families should experience as they reach the end of their involvement with a program led us to call this aspect of the helping relationship, “Hope.”

We believe that if you can understand enough in the hello component to deliver help in the shortest amount of time and continue an understanding process by joining with the family in reviewing and improving your help then hope will blossom. In essence, hope happens when healing help is provided.

In some ways, this was the easiest of the components for us to reframe. When we’ve asked youth and families about what’s different for them as a result of receiving services through a program that uses the Wraparound approach, they frequently start by telling us in one way or another, “I’ve got hope now. I think my family might just have a future.”

But just as hello isn’t something that only happens at the outset of the arc of care, hope isn’t confined to the closing moments. Hello should kindle and nurture hope throughout the course of the process. Help should be delivered in the context of a powerful optimism designed to increase expectancy on the part of all team members as well as families. Healing should be recognized throughout the entire process of Wraparound as a way to acknowledge and celebrate gains and set the stage for a future of possibilities.

hope

Conclusion

As our experience with and understanding of Wraparound has grown over the past twenty-five years, we have moved from describing wraparound as a series of steps that are followed in a child and family team meeting, to a larger number of steps that also take place outside the meeting, to a series of phases that we go through in our relationships with families.

In this paper we suggest that the next evolution in our understanding of what Wraparound is should be to reference the Wrap process from the perspective of families who are receiving assistance from programs and agencies that use the Wraparound approach. Looking at our efforts in terms of the way we would like families to experience them, we believe they should generate an initial experience of being welcomed, which we have called hello, that gradually develops into a much stronger sense of hope as families receive help that in turn brings about healing.

Many of us tend to think about Wraparound as a sequence of activities: first we do this, and then we do that. As early learners in Wrap it may be necessary to begin with this understanding. If we are being paid to carry out a specific role in an agency or program using the Wraparound approach, we need to know what our job is and how to do it. The power of Wraparound, however, has never been in its sequential steps but the connections between these steps and components. Wraparound has survived and even thrived because it is an evolving framework rather than a specific model. This Four-H Construct can serve as a framework to continue this evolution.

We hope you find this article useful and that thinking about Wraparound in this way gives you new energy and enthusiasm for the important work you are carrying out.

Notations:

  1. There have been many formulations of Wrap’s core values, but a good example is the 10 principles of the Wraparound Process as listed in the National Wraparound Initiative website. They are: 1. Family voice and choice; 2. Team based; 3. Natural Supports; 4. Collaboration; 5. Community-based; 6. Culturally competent; 7. Individualized; 8. Strengths-based; 9. Persistence; 10. Outcome-based. In the NWI framework it is interesting to note that Needs Driven is not part of the list.  This is one example of practice communities making clear decisions about what values they highlight. 
  2. As noted in the NWI definition, wraparound is generally associated with services and supports for children and youth and their families. However, in recent years the wraparound process has been used to support people in other situations, such as frail elderly people who are at risk for multiple hospitalizations and older adults who are living with schizophrenia or dementia. These programs have also discovered that active family involvement is essential for positive outcomes even though in many cases generating that involvement is exceptionally difficult.
  3. It’s not Wraparound Therapy because right away there’s a problem: that would only be a two-letter acronym, WT. And if you changed the name to Wraparound Therapy for Families it would be WTF, and that probably wouldn’t fly either. 
  4. Training on the phases should explore ways in which families experience their participation with helpers during each of the phases. Through engagement families should feel a sense of being heard and understood, through planning a sense of having caring people joining with them to make a difference in their lives, through implementation an improved ability to cope with challenges in their lives, and through transition a sense of self-efficacy and optimism for the future. Unfortunately, this reflective aspect of the Phases framework is often lost in translation.

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About the authors: Mary Jo, Pat and John are not that folk trio you sort of remember from the late 80's, however they have been part of the development of the wraparound approach since about that time. Mary Jo was a leading member of the team that designed Wraparound Milwaukee, currently serves as its Deputy Director and also consults with system of care projects using the wrap model in several states. Pat, who lives in Portland, Oregon, was the director of one of the first on the ground implementations of wrap in the Alaska Youth Initiative, then helped get wrap going in Columbus, Ohio. She has gone on to assist agencies and communities throughout the United States with system and practice innovations. John, who lives in Madison, Wisconsin, has been fortunate to work with Mary Jo and Pat in several of their endeavors and has also been privileged to help several wrap and system of care operations get off the ground over the years. Many of Pat and John's articles and presentations can be found on their website, www.paperboat.com.  

HR 3717 challenges us to assess our belief system around what works and what doesn’t

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Morning Zen Guest Blog Post ~ *Jammie Farish ~ 

It was an out of body experience for this Oregon mom, advocate and systems change agent today while I sat in a chair, inside of room 441 in the House of Representatives. Not because I’m new to all of this, in fact it’s quite the opposite. I crossed my legs, folded my hands and  began to briefly dive into relevant parts of my personal journey with my son, I could hear the echoes of voices all around me, voices of the children, youth and families I carry with me from the past. This sacred journey of storytelling and carrying forward our stories, our pain and agony. My ears remembered the words from my son just a few days ago telling me he was done with life and wanted to die. My eyes could still feel the tears that had fallen and see the holes in my walls. My gut is twisted with regret, angst and despair at my inability to get him the help he needs. Somehow each day I find myself hoping he is alive and I can remain sane through it all.  But inside my heart you will also find the light of hope and my idealist brain forges ahead to make a difference in the lives of those who are touched by mental illness and addictions in their lives.

In a half circle we sat, with varying perspectives seen through the goggles of job descriptions and degrees and for some lived experience.  Most nodded, held eye contact, asked questions. Some closed their eyes longer and my mind briefly wandered as I wished I could just close my eyes and find peace there. Everyone relevant, passionate, caring and unique. This bill and all of its potential to fall for good or evil has united fires everywhere. Our values have been challenged! Our belief systems around what works and doesn’t is rocked. Conversations on the news, shootings in the schools and war torn families hidden behind the walls they live in. What is this all about? Why do we all care so much? How can we call each other names or draw lines as if enemies? A dad lost his son, I may lose mine in the end and many others have their own stories to share of loss.

As a mother I am desperate to help my son, but I have been here before many times. My son needs to be in a safe place where he can get the right treatment at the right time. I can see what he needs, his pain is my pain. I am also an advocate and believe strongly in civil rights which in this case would be my son’s right to choose to take medication or enter treatment. I have a destroyed house, stolen property and family members with bruises. Trips to the ER end with my son be turned right back out onto the street again within 24 – 48 hours and we all know how the story goes.

What I know after 14 years of systems change work and advocacy is this - we can’t do it alone and we can’t give up! We must continue to come together across the lines to share and find common ground. We must tirelessly come together to listen to one another’s pain, to learn more and eventually move ever so slowly toward reform, hope and resiliency. HR 3717 is just that – an opportunity to begin to shrink the dividing lines between the people and the systems and figure this all out. It has lit a fire under and issue that has needed solving for a very long time.  But most of all it’s a reminder of a dad and his son and today this mom and her son and tomorrow more of the same. 

Ms. Farish was a participant in the CMHNetwork dialogue on Assisted Outpatient Treatment held earlier this week in the Cannon House Office Building, Washington, DC 

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jammieJammie Farish, Youth M.O.V.E. (Motivating Others through Voices of Experience) Oregon – Jammie Farish is the Training and Development Director for Youth M.O.V.E. Oregon. In 2009, Jammie worked with Martin Rafferty and Lisa Moody to found Youth M.O.V.E. Oregon and establish it as an independent, youth-driven organization that has had a sizeable impact at both the local and state levels. Motivated by her journey in the mental health system with her son, Jammie left the world of Special Education with the school district to pursue work in the field of peer services and advocacy. This experience led to her professional pursuits as a Family and Youth Advocate dedicated to system of care reform, community-based wraparound services, and peer delivered services, advocacy, and more. For her work, she has been awarded Oregon Mental Health Award of Excellence and the Children’s Mental Health Advocate of the Year (Oregon Council of Child and Adolescent Psychiatry). 

Exercising restraint in schools

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In 2012, I wrote an article for the Sunday New York Times that exposed the use of physical restraints and seclusion rooms with kids in schools across the country.

I learned about these practices, which at the time seemed almost unimaginable to me and many other parents, when I discovered that our 5 year-old daughter had been locked almost daily, over a three-month period, in a seclusion room, which had previously been a teacher's phone booth, and was later used as a mop closet, in the basement stairwell at her school in Lexington, MA.

In the two years since my Times story, the controversy surrounding the use of physical restraints and seclusion rooms in schools has exploded and resonated across the country from Hawaii to Massachusetts, fueled by a powerful combination of concerned parents and enterprising journalists intent on exposing these practices when and where they occur. Meanwhile, many schools have publicly denied their existence, in some cases despite incontrovertible evidence, and parents can find themselves being intimidated or even publicly attacked for speaking out.

For two years, I've witnessed the evolution of this story as a journalist, and at the same time the issue has affected me as a parent whose child was subjected to these damaging practices. As increasing numbers of parents are becoming concerned about the use of restraints and seclusion rooms in schools attended by their kids, and as a national mobilization of concerned parents and others is underway seeking to pass national legislation to curtail these practices, it seemed like a good time to take a look at the issue from a parent's perspective.

Specifically, how widespread are the use of restraints and seclusion? Are they needed? What do parents face when they challenge their schools or speak out about their use? And how can parents and other concerned members of the public get involved with national efforts to insure that all kids are kept safe in school?

What exactly is restraint and seclusion in schools? Is it like a student getting a "time out?" 
According to the U.S. House Committee on Education and the Workforce, which is working to ban these practices:

  • "Seclusion means involuntarily isolating a student in an area by himself or herself [from which the student is physically prevented from leaving.] . . . This includes putting children in dark, small rooms as punishment." This is different than a "time out" in which a student is separated from others to allow him or her a chance to calm down.

DANGEROUS PRACTICES--The use of restraints and seclusion rooms, such as these in a Lexington, MA school, often lead to physical and emotional injury to students. 
Restraint according to the Committee means "restricting a student's freedom of movement [including immobilizing a student's torso, arms, legs or head]. Restraint can become fatal when it prevents a child's ability to breathe. In some of the cases examined in [a 2009 Government Accountability Office] report, ropes, duct tape, chairs with straps and bungee cords were used to restrain or isolate young children."

How widespread are these practices and what kids are involved? 
A 2009 Government Accountability Office (GAO) report found that 20 students had died while in seclusion rooms; countless others as young as three and four years old have been injured and traumatized. One young teen in Georgia hung himself in a seclusion room while staff sat outside the locked door; a seven year-old died face down in physical restraint; and a young teen was suffocated face down in restraint by his teacher twice his size.

According to the advocacy group TASH, recent reports indicate that the shoes of an 8 year-old with Down Syndrome were duct-taped so tightly that she could not walk and her ankles were bruised; a 10 year-old with autism was pinned face down after getting upset over a puzzle; and a child with Cerebral Palsy severed her finger when she was confined in seclusion. Parents often are not told by schools about restraint or seclusion, or they learn about it long after it has occurred.

Federal data released in March from the U.S. Department of Education Office for Civil Rights documents the extent of restraint and seclusion, finding more than 267,000 incidents reported nationwide in the 2012 school year alone. According to a recent statement from Rep. George Miller of the House Education and Workforce Committee, "while that number is alarming in itself, what's even more concerning is the fact that many of our largest school districts failed to report on their use of seclusion and restraint at all --indicating that the actual rate of use is likely much higher."

Also alarming, according to Miller, is that "despite the fact that special needs students comprise only 12 percent of the total student population, this data shows that nearly 60 percent of all incidents of seclusion or involuntary confinement involve students with physical, emotional, or intellectual disabilities, and that these students make up 75 percent of those subjected to restraints."

Additionally, their use is disproportionate by race: African-American students comprise only 19 percent of all students with disabilities, but they make up 36 percent of students with disabilities subjected to mechanical restraint.

The Department of Education Office for Civil Rights tracked the use of restraints and seclusion state by state and school district by school district and found: "in Nevada, Florida, and Wyoming, students with disabilities . . . represent less than 15% of students enrolled in the state, but more than 90% of the students who were physically restrained in the state. Nevada (96%), Florida (95%), and Wyoming (93%) reported the highest percentages of physically retrained students with disabilities. . ."

But aren't restraint and seclusion sometimes needed? How else can schools handle kids, especially those who can be difficult and get out of control? 
The short answer is, as experts will tell you, that physical restraints and seclusion rooms don't work as ways of helping students learn and practice self-control, and that according to research there are behavioral techniques of working with kids that do work, as well as teaching kids self-regulation, how to negotiate and how to communicate more effectively.

The U.S. Secretary of Education, Arne Duncan, wrote to schools nationally in 2012 saying, "there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques." Furthermore, Duncan stressed that "any behavioral intervention must be consistent with the child's rights to be treated with dignity and to be free from abuse."

According to TASH, there are "evidence-based positive behavioral interventions and supports [that have been] shown to greatly diminish and even eliminate the need to use restraint and seclusion." As an example, Dr. Michael George, director of Lehigh University's Centennial School, an alternative school in Pennsylvania that targets students with aggressive behavioral issues, told the U.S. Senate Committee on Health, Education, Labor and Pensions that when he arrived at the school, "the use of physical restraint was commonplace." George said he closed the school's two seclusion rooms, and cut restraint and seclusion use from over 1,000 occurrences per year to less than ten through the use of positive intervention plans. "We have the technical knowledge necessary . . . to end the overreliance of seclusion and physical restraint," he said.

Joe Ryan seconds Dr. George. Dr. Ryan is a Professor of Special Education at Clemson University and a national expert on working with students with emotional and behavioral disorders. "It simply defies logic," said Ryan, "that with the current emphasis on implementing evidence-based practices in classrooms, many schools have elected to embrace seclusion and restraint while ignoring safer research based practices for managing aggressive behaviors."

The impact on parents who find their children have been subjected to restraints and seclusion can be devastating.

Robert Ernst was subjected to a seclusion room as a first grader in Lexington, MA. Robert, who's now 19, told his story recently in Washington, DC, at an event held for the introduction of federal legislation that would curb these practices.

"I was in first grade and I was taken by my special education teachers to a seclusion room for acting out in class," said Robert. "I was dragged down the hallway of the school by my wrists, and thrown into a windowless, padded concrete room by myself, complexly unsupervised for up to a half hour at a time . . . At the time this was extremely terrifying."

His mother, Wendy Ernst, recalls what it was like to try and advocate for Robert:

"It was a difficult time because the school didn't want to listen to any other perspectives about what they might be able to do," said Wendy. They were insistent that it was the only thing that would work. It made you feel frustrated that they couldn't come up with something else as this was obviously harming your child. It was like torture." 

SPEAKING OUT ON SECLUSION--Robert Ernst, subjected to seclusion practices as a first grader, talks about his experiences at the introduction of the "Keeping All Students Safe Act" earlier this year. 
When asked what advice she had for parents dealing with these issues, Wendy Ernst responded: "Tell them to stand up for your child. Believe your child. And insist on having reports in writing . . . They can't say they didn't do that. Because it's in writing." Wendy added that restraint and seclusion are "too often is the first response, when it should only be used as a last resort when someone is in imminent danger."

What about parents who speak up? What are the risks involved for parents who can find themselves being singled out for speaking about these issues publicly and trying to help their children?

All too often the response of school districts when confronted about the use of restraints and seclusion is to deny, minimize and blame.

In Hawaii, in early 2013, Hawaii News Now reported that the families of six disabled students had come forward with allegations of abuse by school staff. Cell phone images of one student being held down by the neck were released, and a lawsuit alleged that another student was forced to eat food she had thrown up. According to the news organization: "At the time of the allegations, the state said its own investigation had uncovered no evidence of abuse and that the women who made the initial claims were lying. Earlier this year, an administrative law judge ruled the students had been physically and emotionally abused by school staffers and suggested that the state had botched its investigation into the abuse."

As a result of the actions of the parents and news coverage, a state bill that prohibits the use of seclusion and physical restraint on students in public schools, and protects some of Hawaii's most vulnerable students, was signed into law by Governor Neil Abercrombie.

In Lexington, MA, a survey of parents of kids with special needs found that of 61 parents commenting on their communications with the school, 23 of them (37%) indicated that they felt intimidation and the fear of reduction of services, or not receiving the services their children need, as reasons for not feeling comfortable raising questions and concerns.

One Lexington parent stated in the report, "I am afraid of being considered a trouble maker and then my child's services will suffer." Another parent commented, "There is retaliation for raising concerns in the form of delayed meetings, limiting access to teachers, and even filing false child abuse reports."

Keeping All Students Safe Act 
To curtail the use of restraint and seclusion in schools across the country, Senator Tom Harkin and Rep. George Miller have introduced the federal Keeping All Students Safe Act.

"These harmful practices, referred to as seclusion and restraint, are commonly used as disciplinary measures, most frequently on students of color and those with disabilities," wrote Rep. George Miller regarding the bill, which would ban restraint and seclusion except in cases where the student or others are in imminent danger.

"There's a patchwork of largely lackluster state laws and regulations that leaves thousands of students vulnerable to abuse each school year," said Miller in a recent letter. "Despite federal laws limiting use of seclusion and restraint in hospitals, psychiatric facilities, community-based facilities, and even prisons, no such federal law exists to restrict this abuse in schools. Few states provide protections for all children by law, and many states have weak legal protections or no protections at all." 

CONGRESSIONAL ACTION--U.S. Senator Tom Harkin introduced the "Keeping All Students Safe Act" on February 12, 2014. 
Opposition to the legislation comes from the American Association of School Administrators which objects to the requirement that restraint can only be used to avoid serious bodily injury since, according to the AASA, it would be impossible for school staff to make a determination about whether the risk of injury in a crisis situation could lead to serious bodily injury. The AASA is also arguing that the data collection provisions of the act as well the demands on staff training will be both burdensome and costly for school districts.

But Sen. Tom Harkin rejects these reasons for allowing these practices to continue.

"These old myths, these old ways of treating people have got to go by the wayside," Harkin said at the Feb. 12 press conference introducing the Keeping All Students Safe Act. "You have to wonder how many young lives have been so severely damaged that they cannot be fully included members of our society."

Harkin compared the seclusion rooms he has seen in schools to a recent trip he took to Cuba.

"You know what that reminds me of, folks?" said Senator Harkin, gesturing to the photograph of a school isolation room. "You know where I was last Saturday? I was in Guantanamo, Cuba . . . We went and saw the cells where the keep the most dangerous terrorists in the world. And you know what their cells look like? Like that. And that's where they're putting our kids, in schools." 

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billBill Lichtenstein is a founding member of #KeepStudentsSafe and a fierce advocate for the rights of youth and families. Nationally recognized for both journalism and media, his work has appeared in some of the nation's leading publications including the New York Times. His work has been honored with more than 60 major journalism awards, including a Peabody Award; a Guggenheim Fellowship; eight National Headliner Awards; a United Nations Media Award, and three National News Emmy Award nominations.

Originally published in the Autism File.

HR 3717 will lead to treatment before tragedy

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Morning Zen Guest Blog Post ~ Dottie Pacharis ~ 

At age 27, my son's life and the lives of his family changed forever. He was transformed into a different person. His behavior became weird, psychotic and delusional. He was obsessed with neurotic religious beliefs: He thought that God had anointed him a prophet and commissioned him to write another book for the Bible.

He believed he was in the witness-protection program, and federal agents were trying to assassinate him because he was in possession of top-secret information that would take down important people in the government if he went public. He developed an unhealthy fixation for the president and made many attempts to get into the White House. He thought he had a top-secret White House security clearance, and that the FBI had issued him a special gun permit.

There were days he actually believed he was the president, living in the White House. He was in complete denial that anything was wrong with him. It took the assault of a police officer to get him committed to a hospital where he was diagnosed with bipolar disorder.

My son was so ill my family feared he would never recover. But recover he did after 32 days of treatment with forced medications. He suffered four additional, prolonged bipolar-manic episodes, each episode preceded by his decision to stop taking his medication. Each episode more severe than the previous and of a longer duration. The longer duration was because of judges at commitment hearings who ruled time and time again that my son was not a danger to himself or others — oftentimes against the recommendation of the treating psychiatrist.

These judges were complying with state laws that set strict controls regarding hospitalization with forced treatment, restricting it to circumstances when a person is suicidal or homicidal. These laws force families to watch their loved ones deteriorate mentally until they reach the crisis stage and meet the commitment criteria of being a danger to themselves or others. By that time, it is sometimes too late.

Each time my son was allowed to go untreated for long periods of time, he sustained further brain damage. His downward course was aided by an ineffective legal system that continually protected his civil right to refuse treatment until he became suicidal or homicidal. This illness left him trapped in a body ravaged by irreversible damage from untreated bipolar disorder. Sadly, he was allowed to reach the crisis stage one time too many. His third attempt at suicide was successful.

Following the Newtown, Conn., shootings, Rep. Tim Murphy (R-Pa.), a clinical psychologist by training, raised awareness of the need to fix our broken mental-health system and led the charge on Capitol Hill for reform. He spent a year reviewing federal mental-health policies and last December introduced the Helping Families in Mental Health Crisis Act, H.R. 3717.

This bill emerged from a series of hearings on mental-illness-treatment issues before the House Energy and Commerce Subcommittee on Oversight and Investigations, which Murphy chairs. These hearings, according to Murphy, "revealed that the approach by the federal government to mental health is a chaotic patchwork of antiquated programs and ineffective policies across numerous agencies."

Families for decades have had to work within the constraints of our broken, dysfunctional mental-health system that fails the sickest — those people who need treatment the most, but are too sick to recognize their illness, and refuse treatment. This bill addresses the obstacles families face when trying to save loved ones from untreated serious mental illness. It would expand access to treatment for individuals who miss out on mental-health services because they are too ill to seek them.

Serious psychiatric disorders, such as bipolar, schizophrenia and severe depression, require medical intervention. They are treatable. They do not have to result in suicide or mass shootings. Helping Families in Mental Health Crisis is the most comprehensive mental-health-reform legislation to be introduced in 51 years. It will lead to treatment before tragedy.

Had H.R. 3717 been law during my son's 13-year struggle with severe bipolar disorder, his family would have been able to help him get treatment. He might very well be alive today.

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dottieDottie Pacharis is retired from a law firm in Washington, DC. She divides her time between Fort Myers Beach, Florida, and West River, Maryland. Since her son’s battle with bipolar disorder, she has become an advocate for appropriate care for the mentally ill, especially family involvement in decisions about treatment. Dottie is the author of Mind on the Run – A Bipolar Chronicle, the story of a suicide that proper treatment would have prevented. She has been a featured speaker at various mental health organizations and has been published in the Wall Street Journal, Washington Times, Guardian UK, News-Press, Ground Report, and the Orlando Sentinel.

This article was originally posted as an editorial in the Orlando Sentinel. 

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