The popular movie "Waiting for Superman" details the lives of several families anxiously waiting on their acceptance to charter schools lotteries as an answer to their failing public school option. The plight of these mostly black and brown families ignites a strong feeling of unjustness throughout the movie on several levels with the primary one being, "How could a child actually make it out of a public school that bad?". No amount of pulling oneself up by the bootstraps could get a child out of a school district with such low graduation rates. The movie gives a strong impression that charter schools are the only answer to this epidemic, and President-elect Trump appears to agree with his recent appointment of Betsy DeVos, a charter school and school voucher advocate.
The movie gives a startling statistic mid-way through, however, that one in five charter schools perform the same or worse than public schools. Trump and DeVos, a billionaire and heir to Amway and an investment management group, with their extensive business backgrounds curiously fail to discuss this poor ROI in advocating for privatization of schools. Unless you examine it a bit more deeply and realize that, in this investment equation, the children and families themselves are not the investors (they are not monetary beneficiaries of these failing schools or charter programs) or the consumers (which implies families have a choice between low quality and better quality). The misleading title of "school choice" legislation is a misnomer for low-income neighborhoods with few quality options for school choice, either public or private.
One begins to wonder, with DeVos and Trump's clear understanding of how businesses are successful, why such a low rate of success would be satisfactory if they truly believe these charters and vouchers are the answer to failing schools . . . unless you frame the conversation exclusively from a business perspective. Privatized charter schools with a low-rate of return suck valuable funding from public schools but turn a quick profit for private companies before closing within three years (due to failing scores). Charter schools require low investment capital because they are staffed by inexperienced teachers (read: cheap) who have hopes and dreams of changing the world but are rapidly faced with the realities of teaching a population of children that require more skills and education to be successful, not less. Worse yet, the hopes and dreams are peddled to affluent young teachers as a line item for their resumes, no more than a way-station on their route to a more "serious" career.
From a business standpoint, charter schools and school vouchers are a profitable market. Morally, however, selling out low-income schools to the highest bidder is repugnant and incompatible with what makes America great, which is opportunity. Without quality public schools, many of our most vulnerable students will never be given the opportunity to rise above their circumstances to have the same chances as those in higher socio-economic income brackets. Even middle class families will have to cough up funding for transportation to private or out-of-district schools or move far away from their jobs and families to support a quality public education. The irony is that the picture perfect vision of the 1950s and 1960s painted by President-elect Trump requires public school education in order to be complete. His very vision marketed to many Americans is in jeopardy.
Rather than capitalizing on draining the rich coffers of our K-12 public education system, President-elect Trump would do well to shift the focus to match the changing demographic of Americans, particularly working Americans with families who are paying an exorbitant amount of money for early childhood education (from birth through ages five). Quality early childhood programs are in high demand yet hard to come by for an affordable price. And, as we learn more about the brain science of the first five years of life, we are learning how crucial these early years are to lifelong success. A child's brain grows rapidly in the first three to five years of life and vocabulary at age three is predictive of future literacy success. And it is not just preparing children for reading and math. Early childhood educators teach and model valuable lessons to children in the crucial early years around nutrition, health and physical fitness, social-emotional growth, communication that contributes to literacy (language), and early academics to a captive audience.
But more importantly, quality early childhood education can improve the epidemic of failing schools with a front-end investment. Better still, early childhood education research shows that quality education can mediate the negative effects of poverty. Early childhood education teachers can serve as a intermediary to families in need or in crisis by providing a stable, supportive environment. They are afforded the space to love and care for children, growing their brains in a positive way, without the stressors of assessments and testing that cripple K-12 teachers and prevent them from meeting all of the demands of vulnerable children growing up in poverty. Financial investment and improvements to the early childhood education system will create an immediate ROI for the families, eventually the K-12 system, and ultimately our country. Rather than fostering a system of catch-up once children arrive at school, where many children arrive lagging three or four years behind, teachers can simply continue a student's education on a strong trajectory towards educational success.
A radical approach to education is needed if the US ever hopes to move from the "middle of the pack" in the STEM fields to competing at an international level. President-elect Trump has proven himself to be up for radical change, and the DeVos appointment is no exception. But Trump's idealized vision of America must include a modern day approach to education that ultimately improves the system in the long term for future generations. An investment in early childhood education will ensure that Trump's education legacy is morally and financially sound.
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Jessica Bergeron is Director of the Katherine Hamm Center at the Atlanta Speech School. The Katherine Hamm Center at the Atlanta Speech School serves children who are deaf and hard of hearing (DHH) and helps them realize their full potential in language and literacy through listening and talking. Dr. Bergeron received her Ph.D. in Special Education with an emphasis in Deaf Education from Georgia State University. Her research interests include emergent literacy with children who are deaf and hard of hearing (DHH), particularly related to the family’s role and strategies that contribute to successful outcomes in language and literacy development. While she was working on her doctorate, she worked as a research teacher for Georgia State University for four years. That collaborative project resulted in the development of the only early literacy curriculum designed for children who are DHH called Foundations for Literacy.
Researchers at Teachers College, Columbia University are seeking adults from diverse backgrounds, to participate in a study aimed at understanding both whether and when people experienced difficult or adverse events in the first 18 years of their life, as well as their mental health in adulthood.
It is important that we ask these questions...and then truly LISTEN to the responses. What won't be learned with this study is what factors helped an individual live with and then overcome negative thinking with dysfunctional behaviors to achieve (or not achieve) the level of success they have today. As a 'retired' pediatrician working child abuse and advocacy for 30 years, and now in my 'third career' (called "retirement") I believe the key is the presence of a 'team' of caring individuals, who all too often don't know each other, who take an interest in the child and put in energy, not because they have to, but because they can, and want to, to help that child achieve stability and personal happiness. It's called "Serendipity," part of the fabric of "The Universal Spirit." What we need to do, together, is stop letting it happen by 'chance,' and make it happen due to proactive vigilance as a society, certainly a hopeful outcome in conducting this survey. "History repeats itself, opportunity doesn't." On behalf of myself, a child and adult survivor, and others, thanks for asking.
You can learn more about the survey, and take it, here.
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COL (Ret) George Patrin, M.D., spent over 23 years as an Army Pediatrician and Healthcare Administrator concentrating on Family Advocacy and Healthcare Process Improvement. His final assignment was as Northern Regional Command Special Projects Officer for Patient-Family Centered Healthcare assisting in writing DoD Patient Centered Medical Home (PCMH) Guidelines and Training. He has been a staunch advocate for both soldier and family member readiness throughout is military career. He is a sought after speaker on parenting education, child abuse prevention, school learning and behavior problems, and healthcare administration optimization. Dr. Patrin is a member of the Children's Mental Health Network Advisory Council. He can be contacted at email@example.com.
Without advocacy we cannot change a thing. Heaven knows there’s a lot that needs fixing, changing and bettering in our world today. Sometimes the changes are small and just need a little push. But many times, a small push won’t cut it. Big changes require big advocacy and advocacy requires boldness and bravery.
When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs. I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case. I figured I could rely on the goodwill of the people who were concerned about him. I absolutely knew in my heart that these were the necessary ingredients for success.
I know you’ll be just as surprised as I was to find out that’s not how it works.
I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom. He had already missed the second half of first grade because of phobias, depression and suicidal behavior. He had had one pretty lengthy inpatient stay. The school suggested that the school psychologist, Maryellen, evaluate him.
When Maryellen and I met, I felt nervous but sure that we would see eye to eye. She ran through the test results and agreed with his diagnoses. She added that he was very, very smart – his IQ was in the near genius range. She looked me in the eye and said, “High IQs tend to run in families. His father must be very smart.” I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help. Later I realized I had experienced disrespect as a tactic to change the meeting outcome. On that day an advocate was born.
Moments like these change things. You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow. It can scare even the most intrepid hiker, but here you are taking the first step. You learn not just to advocate, but to become an advocate.
It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy. People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified. You find out you have to make it happen. You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself. You change your expectations, you change your definition of success and most of all, you change who you are. As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”
Advocacy can be uncomfortable. For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first. Advocacy is something done publicly. It is played out in a setting that is very different from many other things we do. You do it in front of an audience, sometimes big, sometimes small. While some nod their heads along with the points you make, others assume a “show me” stance. When you get them to nod their heads too, even a little, you feel pretty fine.
You learn that advocacy does not have to be adversarial. It is sometimes, but many times it’s not. Lots of times it’s about being articulate, passionate, persistent and even patient. It’s also about being prepared and being stubborn. It’s about looking for options and sometimes creating them.
Without advocacy, people assume we are okay with the status quo. Without advocacy they don’t hear us or overlook our perspective. Without advocacy, we cannot make a difference for our family and for other families.
For many families, figuring out how to go about advocating is like playing a Jeopardy game. You know the answer you want and you try to figure out the right questions to get there. Advocacy is a skill, or set of skills, just like playing Jeopardy. If you hone those skills, you might get the jackpot instead of the smaller prizes. But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep. You have to trust in your skills when you cannot trust in anything else. Unlike Jeopardy, there are days when you do everything right and you simply don’t win.
Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.
When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on. Others would share their own stories. Some would ask me to help. When I did, I learned that if you help one family, you only help one family. The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.
Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards. Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise. Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room. It’s why you are there.
My son watched me advocate over the years first for him, later for families like our own. One day, he said, “I want to listen and watch. I think I can advocate, too.” Great, I told him. And he has. It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment. He understands that, too. One day, when we were talking I told him, “Advocacy is our family business, you know. Some families have stores or restaurants or trades where the children learn a lot about the business from an early age. Just like you’ve learned about advocacy.” He grinned and nodded. “I’m okay with that,” he said.
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Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL), a statewide, family-run, grassroots nonprofit organization based in Boston. Lisa 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. She became involved with PPAL, first on a regional level and then on a statewide level. Her areas of expertise include mental health policy, systems advocacy and family-driven research. Realizing that individual parent and youth stories need to be supported by data, Lisa authored several family-driven studies which highlighted the challenges families encountered when accessing services, their perspectives on psychotropic medications and the training needs of family partners. Lisa also authored a chronicle of PPAL’s Worcester-based youth group which highlighted how a strong youth-guided initiative had an impact on their community. Lisa has been instrumental in working with local and national media to highlight the concerns of families and youth. She is dedicated to ensuring that family voice is included in every state and national conversation about the policies, practices or services that impact them.
Do you have outrage fatigue? Yeah? I think I do, too. I’ve noticed that it feels a lot like the disbelief and exhaustion that comes with parenting a child with mental health problems.
Each day my inbox, Facebook and Twitter feeds, social media and most of all, the 24/7 news are filled with stories that are designed to outrage. Much of the time they truly do. We have a presidential election going on that seems more like a reality show with way more than the usual sniping going on. We hear the over the top comments, new twists on old scandals and on top of the television pundits, our friends and family are happy to post their opinions too.
Nearly every week I see (and you probably do, too) the video feed of a new shooting and many times (though not always) the police are involved. In some cases it’s clear that racial bias plays a part in how events unfold and in other cases it’s less clear. There are other times where the shooter may have significant mental health problems and has not received the treatment he needed. Sometimes people with disabilities are the ones being shot. A few weeks ago, a deaf man was shot by police in North Carolina and earlier this week a woman threatening to kill herself was shot here in Massachusetts. We are horrified and outraged and barely have time to hear the details before the next story grabs our attention.
We are not imagining it. One study found that “outrage discourse” was found in 100% of cable TV episodes, 98.8% of talk radio programs, and 82.8% of blog posts. On average, examples occurred once during every 90 to 100 seconds of political programming on TV and even more often on radio. Syndicated newspaper columnists used outrage discourse much less frequently than other media analyzed, but more frequently compared to columns from 1955 and 1975.
Only a few years ago, we talked about compassion fatigue. The mood was different. We saw abused animals in television ads. We heard about the victims of diseases such as Ebola. We saw the devastation caused by natural disasters and heard how it made people homeless and hungry and we were asked to take action and give. Lots of us did. For parents, the stories of children losing their homes and their families were particularly tough. Those heartrending stories came into our homes and social media often and while we felt sad, many of us also felt overwhelmed.
Then something shifted. I can’t quite put my finger on when that happened but today we are told to be outraged (and much of the time we probably should be), not saddened. We hear about the latest event, share the pictures, the stories and the comments. We even add our own to the mix. But the outrages come fast and furious and we barely have time to exclaim, post that emoji and comment before the next outrage appears.
Any parent of a child with mental health needs can tell you what is going to happen next. We are going to get exhausted and overwhelmed. We are on a constant cycle of reacting, figuring things out, moving on and starting over again. Voila! Outrage fatigue.
When you parent a child who has multiple meltdowns and whose moods and behaviors are like a roller coaster, you shift your idea of what to react to. You accommodate the slightly awful and save your energy for the truly terrible. When you bang your already aching head against the wall of failed approaches, balky systems and waits that defy imagination, you learn to ignore the slightly shocking and save your determination for the jaw-dropping, I-can’t-believe-this-is happening events.
Social media, live streaming and 24/7 news lets us stay connected in ways that were not possible before now. The good news is they can also be empowering, informing and entertaining. But when what you hear is the same awful news or outrageous remark over and over, it loses its punch and ability to galvanize you into action. We can’t maintain a state of intense moral outrage indefinitely. What’s worse is that our barometer, or outrage-meter, begins to malfunction and it doesn’t register the only-somewhat-awful. Just like ignoring that risky, over-the-top or unsafe behavior you’ve adjusted to managing at home.
Outrage should be a good thing and spur us into action. Stories about climate change, the election, police shootings and terrorist attacks are intended to inform us but also motivate us to take action. Sure we can give or donate, but the message encourages us to make a difference and act. It might be to vote, sign a petition, join a protest or volunteer. Outrage springs from a sense of basic decency and moral rightness and we know when that has been violated. Like many uncomfortable emotions, it’s actually healthy. We are engaged, fired up and we want to make a difference.
Children’s mental health advocacy relies on outrage. There are children and teens waiting in emergency departments for elusive hospital beds. One of the children who was waiting only a week or so ago was five. We should all be outraged at that. Waits for outpatient care can be weeks or even months and at the first appointment parents discover the clinicians are frequently new to the work. Parenting a child with mental health needs is more like quilting, piecing together services paid for by insurers, schools, state agencies and often, out of pocket. We have a system to try the patience of a saint, as if the child you are trying to help didn’t already stretch that patience thin.
But when we hear of 5, 10 or more outrageous things a day, it’s hard for the less outrageous to get traction. People think they’ve already heard about stuck kids, waiting kids, struggling kids. The quiet outrage families feel gets lost and doesn’t burn bright in others, the ones we hope will be the champions we need.
Outrage fatigue hurts us in several ways. We begin to think outrageous events are epidemic. They are everywhere and spreading rapidly. We learn to look for the new ones and pay less attention to the ones we already know. We can feel overwhelmed and tired and want to find a quiet space rather than jump in the fray to change things. Different events and tragedies compete with one another and we try to prioritize them even though we are comparing apples, asparagus and armadillos.
While I admit to a self diagnosis of outrage fatigue, I am not saying that we should abandon telling each other about kids waiting for services or the harm stigma can do or the immense burden that families still haul around as they identify, coordinate and (finally) access care for their children. We need those stories. We should feel appalled and want to change things. That’s good because this is something we can fix in big and small ways. Unlike a lot of other things in my inbox.
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Lisa 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.
Morning Zen Guest Blog Post ~ This Zen Moment brought to you by Kimberley Blaine, former employee at CII ~
Mary M. Emmons, President and Chief Executive Officer of the Children’s Institute Inc. (CII), is retiring after many years of dedicated service. For 35 years of her career, Mary oversaw the operations of CII, a Los Angeles-based child welfare agency with more than 47 programs dealing with child abuse prevention, treatment, and training.
A graduate of The University of Chicago, Mary has a background of more than 40 years in government and nonprofit health and children’s services including positions with HeadStart, the U.S. Office of Child Development, City of Chicago Model Cities Program, and the Daniel Freeman Hospital Medical Center.
After joining CII in 1981, Mary expanded its capabilities to create a comprehensive, community-based continuum of services for children and families and a training center for professionals working with abused children.
Mary proved herself to be a quiet leader whose brilliance had a positive impact, improving services and support systems for the families of children with mental health challenges. From effecting changes in policy, childcare and advocacy efforts to best practices for mental health services, Mary was the pillar of strength that stood behind over 900 employees at CII.
When you meet Mary, you quickly discover she is a fierce advocate for vulnerable children. For over 18 years I witnessed her assemble top-notch teams of mental health leaders. Watched as she led policy summits, approved and implemented best practices for in-home and foster care services and developed state of the art early childhood mental health teams that would change the way we viewed mental health forever. Through the development of innovative projects addressing child sexual abuse, therapeutic day care and perinatal substance abuse, Mary pioneered new methods of preventing and treating abuse that are now considered models throughout the nation and the world.
There was never a dull moment for Mary at CII. She was so busy that if you wanted to see her but didn’t have an appointment, you’d never get in. Your only option was to wait in the hall and chase her down as she headed to her next meeting. If you were able to get into her office, it surely meant you’d have more work when you walked out for she was the golden goose of delegation. However, if you had a problem, she’d make sure you had the tools and support to find a solution.
Mary was great in crowded events, amazing under pressure and a woman who could navigate the political waters of government entities. What most people don’t know is she loves to travel and loves photography. Her office at CII was adorned with professional-quality photographs she and her late partner, Bill, had taken on their travels around the world. During our weekly meetings, I loved to look at the pictures behind her desk and daydream about traveling as she did. Her photographs made her real—more dimensional. More importantly, they made her happy.
What do you say to a woman who has done so much for the well-being of thousand of families? For all those who have thrived off Mary’s tireless accomplishments, you don’t say a word. You offer gratitude for those who believe that we can all live better and be better while protecting America’s most vulnerable children—which is what she’s done.
Mary, I thank you with all my heart. We at the Children's Mental Health Network wish Mary the best in her ‘next chapter’—for whoever she’s with next is in for real treat.
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Kimberley Clayton Blaine is a licensed marriage and family therapist (LMFT) and is named one of the most powerful moms in social media by Working Mother Magazine. She is an inspirational speaker, author and a nationally recognized mindfulness and positive-psychology thought-leader. Kimberley’s writings have appeared in Wall Street Journal and USA Today Best-sellers as a contributor to the soul healing site of SimpleReminders.com which has over 50 million readers weekly. She was one ofGoogle+‘s first family partners, launching their Online community where parents share and communicate about family life. Today you’ll find Kimberley hosting empowerment retreats all over the country. Her retreats focus on balance and wellness not only for moms but for all women striving to find that perfect mix of mindfulness and empowerment. Kimberley serves on the Children's Mental Health Network Advisory Council.
Morning Zen Guest Blog Post ~ By Eliot Brenner, Ph.D. ~
Two years ago, my wife and I decided it was time for our family to join a church. Our search focused primarily on finding a church where our three young children could learn the values we believed were important. We wanted a church where the congregation was open to differences and accepting of others. Where the pastor and the congregation supported each other and promoted values like integrity, honesty, hard work, charity, and respect for others. It took a while, but we found the right place. And our Sunday worship began.
But it did not last long.
Soon we found ourselves sitting in the pew of another institution: the Church of Children’s Sports. It did not happen overnight. First, our seven year-old daughter joined a town recreational league soccer team. I volunteered to coach her team. In practices and games, I emphasized safety, having fun, and learning soccer skills. The next year, I was assistant coach for my son’s tee-ball team. The team was comprised of seven-year old boys of varying skill levels. As a coach, I taught boys how to catch and hit a baseball, and emphasized supporting one another and being kind and considerate. These are the values I wanted to teach my children.
Then things changed. My oldest daughter, then eight years old, joined a travel soccer team. Practices and games were four days a week. The parents on the sidelines talked more about winning than about teamwork. In close games children who were less skilled spent most of the game on the bench, even though league rules required that all children play at least two quarters of each game.
In the final game of the season, the technical coach became irate with the referee and was eventually thrown out of the game. He was told to leave the field or the police would be called. Several girls on the team were in tears. Surprisingly, I was the only parent that was upset enough about this incident to report it to the league administration. Following this incident, my daughter announced she was done with travel soccer. She would return to the town recreation department league, and pursue other interests in the arts. I was proud of her decision.
A year later, my eight year-old son fell in love with baseball. After deliberating, my wife and I gave him permission to try out for an intensive seven-week baseball league. We knew this would be a strain on the family because practices and games were initially three days a week and progressed to six days a week by the end of the season. Tournaments sometimes involved multiple games on the weekends.
Within a few weeks, baseball games were scheduled on Sunday mornings, conflicting with our church services. I was surprised; I thought there were enough churchgoers that Sunday mornings would be sacrosanct.
In fact, a recent study found children’s sports is the primary reason for declining church attendance. In a related commentary on this topic, the authors said “The idea that Chariots of Fire runner Eric Liddell made it all the way to the 1924 Olympic Games before being asked to compete on a Sunday seems almost quaint.” Some pastors have started offering services on Saturdays. For my family, Saturday is no better than Sunday because both weekend days are filled with sports. For many of today’s parents, there is no escaping the Church of Children’s Sports.
Skipping church to attend our son’s baseball game was in some ways a test of values. On the one hand, we joined a church to be part of a community that reinforced our values. On the other hand, we both appreciated the many benefits of team sports: the development of social skills and social behaviors, self-esteem, and academic and cognitive development.
However, research indicates that these positive effects are mediated by the ways in which coaches, teachers, and parents shape children’s experience of sports. Children need to have positive and enjoyable experiences in which they feel a sense of self-determination and competence.
In other words, the benefits of improved physical and mental health are mediated by the values transmitted by the coaches, teachers, and parents. As parents, we have to be especially aware of the ways in which our children, particularly our younger children, are coached. If it is all about winning rather than developing skills and a sense of competence and self-determination, then many of the benefits of sports may be lost.
The focus on winning at all costs may have additional adverse long-term consequences. For example, the push to excel has led to children specializing in one sport at an early age. Currently, 60 million children in the U.S. play sports each year, and 27% of them play only one sport. A recent report by the American Academy of Pediatrics highlighted the substantial risk of repetitive injuries for children that specialize early.
To reduce repetitive injuries, mental stress, and burnout, the Academy recommends that specializing in one sport be delayed until children are at least 15 years old. Parents often push their children to excel in one sport because they believe it will increase their chances of getting a college scholarship, even though the odds of getting a college scholarship are very slim. This pressure may contribute to the fact that 70% of children drop out of organized sports by the age of 13. The drop out rate is a reminder for parents to focus on the values they want their children to learn from sports: the importance of teamwork, self-determination, and having fun while exercising.
In addition to the risk of repetitive injuries, there is considerable risk of concussion in contact sports such as football, soccer, and hockey. Following on the heals of the National Football League’s scrutiny over their handling of player concussions, the youth football league Pop Warner now faces a similar class action lawsuit.
To reduce the likelihood of concussion in youth sports, nonprofit organizations such as ConcussionCorps offer protocols to help coaches handle concussions and education and advocacy for concussion prevention. For example, ConcussionCorps and the Connecticut Chapter of the American Academy of Pediatrics recommend that children not head a soccer ball before they enter high school.
The risk of concussion in children’s sports is another reminder to parents and coaches to focus on values. To minimize the chances of long-term injury, parents need to ensure that children are removed from play when there is question of a concussion. We all want to our children to excel, but not at the cost of long-term brain injury.
Youth sports is big business: Parents in the U.S. spend $7 billion annually on travel costs related to their children’s travel athletic leagues. Finding the right balance of participation in sports for your child and family is not easy. There are intense pressures to have children compete and win. Sometimes parents feel as though they must have their children play one sport year round for them to remain competitive.
The push for excellence and the time demands on the family of the Church of Children’s Sports can push parents to loose perspective. Focusing on the critical values and skills you want your child to learn from sports can help you maintain perspective.
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Eliot Brenner is a nonprofit executive with 15+ years experience in child welfare, mental health, and philanthropy. He is also a licensed clinical psychologist with a private practice. Dr. Brenner is currently the President and Chief Executive Officer of the Child Guidance Center of Southern Connecticut, which provides mental health treatment, education, and support to more than 3,300 children annually. Dr. Brenner currently serves on the Praesidium National Advisory Council for the development and implementation of national child safety and abuse prevention policies and practices for 2,600 YMCAs that have 20,000 staff and serve 9 million children annually. Dr. Brenner holds a B.A. from the University of Chicago, where he was Phi Beta Kappa and a Ph.D. in clinical psychology from Yale University. Dr. Brenner currently serves on the Children's Mental Health Network Advisory Council.
Amidst the increasingly distasteful clamor that is currently engulfing the presidential campaigns of both Donald Trump and Hillary Clinton, it could be easy to lose site of where the candidates stand on mental health.
Regardless of your opinion about who should be President, if you are a mental health advocate, there are points from both campaigns that bear a closer look. When it comes to ensuring effective services and supports for families who have loved ones with mental health challenges, politics should take a back seat to getting what is best for families.
Bipartisan Reforms in Congress, Strengthening HIPAA – In the one paragraph that specifically addresses mental health, Mr. Trump mentions “promising reforms being developed in Congress that should receive bi-partisan support.” Along with that is a reference to the need for stronger HIPAA guidelines, when Mr. Trump states, “Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones.”
Medicaid Block Grants – Advocates should note that Mr. Trump also promotes the concept of Medicaid block grants to the states, writing that “The state governments know their people best and can manage the administration of Medicaid far better without federal overhead.”
Alarming Views on Mental Health by Campaign Leadership – Perhaps the most troubling statement concerning the Trump position on mental health comes not from his Health Care Reform document, but from a sentence in anemail sent by Steve Bannon, CEO of the Trump campaign. In the email, discussing the possibility of getting behind Paul Ryan’s efforts to overhaul the mental health system, Mr. Bannon nixes the idea and says, “I’ve got a cure for mental health issue. Spank your children more.”
While we don’t know if Mr. Trump shares this position, the fact that the highest leadership in the Trump campaign are making statements like this suggest that mental health advocates who support Donald Trump have an important opportunity to educate the campaign about the complexities involved in mental health reform. Long gone are the days of suggesting that mental health challenges can be dealt with by just “spanking your children more.”
Hillary Clinton Position on Mental Health
Hillary Clinton has produced a 12-page document titled Hillary Clinton’s Comprehensive Agenda on Mental Health. The Clinton plan provides a detailed review of structural changes in the mental health service delivery system that will need to be addressed to achieve true comprehensive reform. A few of the highlights include:
Integration of physical and mental health – Clinton recognizes the critical importance of promoting the integration of physical and mental health, with a strong emphasis on early diagnosis and treatment.
Focus on early intervention – I was pleased to see that in her plan, she is encouraging an increase in the set-aside in the Mental Health Block Grant for early intervention, and even further, moving its status from set-aside to stand-alone program. The only way we will achieve meaningful mental health reform is if we devote the resources necessary to intervening early with a focus on positive mental health.
Expanding reimbursement structures – Clinton astutely recognizes the importance of expanding reimbursement structures in Medicare and Medicaid for collaborative care. We have a drastic shortage of behavioral health providers in this country and creating and implementing new payment models is a must if we are going to support an effective behavioral care workforce to reach those families in most need of mental health services. As well, Clinton calls for supporting the creation of high-quality, comprehensive community health centers in every state.
There are more detailed recommendations in the Clinton plan, but I chose these three as examples that could and should be shared goals across both campaigns.
Advocates supporting Trump or Clinton – doesn’t matter to me. What does matter is that advocates get behind some solid proposals for improving the mental health service delivery system in America. The Clinton plan has some excellent points. Share them widely.
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Scott Bryant-Comstock President & CEO Children's Mental Health Network
Trauma occurs in a variety of forms and to varying degrees. It has a lasting effect on those who experience it. For a long time, I underestimated the effect that trauma had on me.
On April 16, 2007, two weeks after my 21st birthday, I was sitting in class at Virginia Tech when I heard an unfamiliar popping sound. It sounded like gunshots, but I was confused as to why there would be gunshots inside the building. Part of me deep down knew something wasn’t right and that something might be terribly wrong.
Thankfully, several of my quick-responding classmates inquired about the gunshot noise, a few braved the hallways to confirm there was a shooter, and another had the idea to build a barricade with desks and chairs to prevent the shooter from entering our classroom. In just a few seconds, the gunman firing those gunshots was headed for our classroom. During the next twelve minutes, I laid on the floor pushing the desks and chairs against the door while the shooter shot at our door and tried to push it open. Fortunately, our barricade held and the shooter was unable to enter our classroom. Unfortunately, he entered the other four classrooms, killing 30 and injuring 17 students and professors.
When law enforcement arrived and knocked on our classroom door, we didn’t let them in. We were scared and unsure. Approximately thirty minutes later, with greater confidence that the police were who they said they were, we let them in. I hadn’t prepared myself for the tragedy, the horror, and the catastrophe that was all too visible outside my classroom door. I had survived the shooting, and law enforcement came to escort us to a secure location. As I was escorted out of the building, I thought, this has got to be a really bad nightmare.
The days that followed were filled with flowers, candlelight vigils, phone calls and messages from family and friends, and an outpouring of prayers from around the nation. The nights were filled with tears and nightmares. Friends and family told me that I was strong, poised, relaxed, and composed. In my mind, I was anxious, vulnerable, scared, and lonely. How could I tell my friends and family about my feelings of vulnerability when they were complimenting me about my strength? I wanted them to think highly of me. I fooled my family and friends at the cost of my mental health.
In order to push the anxiety and sadness away, I stopped feeling. To stopping feeling means I stopped feeling the “bad” feelings as well as the “good” ones. It is no way to live. I began obsessing about food and exercise. I thought that if I just lost weight, then life would be much better. I created a new problem so that I didn’t have to deal with the trauma that I had experienced.
At the time, I didn’t think my feelings of anxiety and vulnerability were justified. Professors and classmates had died, others were physically injured, and many watched their classmates die next to them. Mothers and fathers lost their children, and brothers and sisters lost their siblings. I didn’t lose a classmate, and I wasn’t physically harmed. I created an imaginary totem pole based on one’s closeness to the shooting and put myself and my feelings at the bottom. I’ve since learned that I’m entitled to my own feelings, regardless of how close to the shooting I was. I didn’t have to be shot to be injured. There is no totem pole of trauma, and there is no good in comparing my experience to others.
I stopped being present because for twelve minutes being present really sucked. I constantly felt vulnerable because for twelve minutes I was really vulnerable. I felt lonely because I didn’t have anyone to talk to. I didn’t share my feelings with others because I couldn’t find anyone who understood what I experienced. Trauma creates a wall between you and anyone who didn’t experience the event with you. I want to tell all survivors of school shootings and other traumatic experiences that these feelings are normal! Don’t push the feelings away because they are telling you something really important – you just have to listen to those feelings to find out what that something important is! I wish someone had told me that nine years ago.
It took me years to admit that I had a problem. I went to counseling a week after the event, the summer after the event, and eight years after the event. It took me three counselors until I found one that worked for me. “I don’t think people understand how stressful it is to explain what’s going on in your head when you don’t understand it yourself” (Instagram @veteranswithptsd). I had to realize that my eating disorder developed gradually over eight years and therefore, it wasn’t going away after one session of counseling. Recovery is not a linear process. There will be setbacks along the way. It takes consistent work, but it is so worth it!
Today, writing and presenting about my personal experience helps me continue in my recovery. I share my story so that I can encourage others who have experienced trauma and may be having similar feelings. Mental health illnesses are nothing to be ashamed about. Seeking counseling isn’t for the weak, but for the brave. The shooting lasted from 9:40 AM to 9:52 AM on April 16, 2007. While 9:52 AM marked the end of the shooting, it was just the beginning of a long recovery.
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Lisa Hamp is a survivor of the 2007 Virginia Tech shooting. Lisa has dedicated herself to sharing her personal experience so that she can encourage others who have experienced trauma and may be having similar feelings. Learn more about Lisa and the work she is doing by visiting her website www.lisahamp.com.
Morning Zen Guest Blog Post ~ John Franz and Patricia Miles ~
Blame it on the Wine As Apollina Smith sat down at the cluster of ancient green, rubber-topped Steelcase tables that had been shoved together for her meeting in the upstairs conference room at Kenyon County Human Services she asked herself, not for the first time, why she had let Cassie Nightingale, the new county executive, talk her into coming back to the county to once again become Director of Human Services. She had been there and done that and had the scars to prove it.
Thirty years ago she had been a unit supervisor and was part of a team that put together the county’s first Wraparound Project. Ten years later she had become the director of the department and wrote the grant proposal that funded the county’s first system of care for families with children who had severe emotional disorders. Ten years after that the great recession hit Kenyon and efforts became focused on efficiency and cuts. Apollina fell on her sword by cutting management rather than line positions. The focus on efficiency and cutbacks continued and eventually placements started creeping up until Kenyon County experienced a full force explosion in out-of-home and out-of-county foster placements and even out-of-state residential placements.
From there Apollina had drifted, heart-broken at what was happening to children and families in her county. For a while, she worked as a consultant. Finally, she took a job managing a child welfare department in a county in Minnesota and assumed that was where she would retire.
But then Cassie, who had been a young and green county board member when Apollina was let go but had grown into a thoughtful and determined change agent, called. Cassie invited her to return to Kenyon to restore stability to the Human Services Department, which had gone through another unpleasant reorganization. As much out of curiosity as any thought that she might take the job, Apollina agreed to at least talk it over.
When she came to town for her initial interview, Cassie took her out to lunch at the Feed Mill, a new restaurant appropriately installed in a restored 19th-century feed mill at the edge of town. The two women shared a bottle of Sauvignon Blanc and a couple of plates of bruschetta on the back deck of the restaurant, looking out over the Kenyon River as it slowly snaked through bottom land thick with goldenrod and milkweed.
“This would give you the chance to finally put your own stamp on how services get delivered in this county,” Cassie had said.
For a few moments, Apollina tried to think of a way to respond to her young friend’s enthusiasm. She didn’t want to sound snarky or condescending, or as old as she sometimes felt. But she had been through so many reforms and reorganizations, innovations and disasters, and just plain ups and downs, that she wasn’t sure she had it in her to take on another challenge. She was no longer under the delusion that there was one, secret, exactly right way to do things. On the other hand, she had also learned the hard way that there were definitely some ways to do things that should be avoided if at all possible.
Finally, undoubtedly influenced by the wine, Apollina had answered, “You know, Cassie, I’ve put my own stamp on a number of things, including a couple of marriages that could have gone better, so I think another option might be to find a way for the people we are trying to help put their stamp on how services get delivered.”
Apollina had hoped that would be enough to knock her out of running for the job, but instead it ignited Cassie’s enthusiasm. A few months later she found herself back in her old offices in Kenyon and preparing to chair her first interagency meeting since her return. Surrounded by well-meaning managers from all of Kenyon’s helping organizations, Apollina wondered why she hadn’t taken her social security and what was left of her pension and retired to a bungalow in Duluth near her daughter and grandkids rather than trying to sell this group on the idea of using a new approach for aligning their services.
After more than forty years in human services, she had come to dread interagency meetings. It wasn’t the people – well, maybe sometimes it was the people – but mostly it was the circular conversations. There were times when she wanted to shout, “Why can’t we all just get along!” But then she remembered that was what Jack Nicholson, playing the president of the United States, said at the end of his speech to the Martian leader in the movie Mars Attacks, just before the Martian used a mechanical handshake to skewer Jack and declare victory over Earth.
When everyone was settled, Apollina looked out at the apprehensive faces around the table. Each person seemed to be wondering what new disaster she would inflict on them. So, instead of an agenda, she reached behind her and brought out a cake to share.
As she uncovered the still-warm pineapple upside down cake topped with golden rings of glistening fruit, each with a bright red cherry in the middle, Fred Armisen, the city of Kenyon’s police chief for the past 30 years, inhaled deeply and said, “If you are trying to bribe me with that cake, Apollina, you are succeeding. I don’t care what you’re up to this time, just give me a piece and show me where to sign.”
Apollina began cutting pieces of cake and passing them around the table. When everyone had some, she said, “Fred, this is not just a cake. It is also a diagram for our new system of care.”
“Mmph,” Fred said as he put the last forkful of cake in his mouth, then slid his plate toward Apollina. “That works for me as long as I can have just a bit more.”
Apollina knew less than a third of the group from her earlier days in Kenyon. From the apprehensive expressions on the new faces around the table, she knew she only had a couple of minutes to engage them.
“So, how many of you have made a cake like this?”
A few people raised their hands. Apollina nodded toward Augustus Waters, a young psychologist who had recently become the director of the community mental health center. She asked him, “What’s the secret to making a good pineapple upside down cake?”
“It’s not so much a secret, as just thinking about the cake from the bottom up,” he answered. “You mix your glaze and put it in the pan, then you set in the pineapple rings and cherries, and finally you pour the batter on top. You want to cut your pineapple slices thick enough to hold together during the baking, and your batter needs to be just the right consistency so that the crumb is light but firm.” He took a bite and then added, “I have to say that if this was a baking competition, you’d get a blue ribbon. But I’m not sure how a cake is going to help us straighten out the service systems in this county.”
Apollina smiled. “Good point, Gus. Even though I do believe that a good piece of cake can cure a variety of ills, in this case, the cake represents a new approach that I hope can bring some energy and direction to the work that we’re all trying to do.”
“Oh, it’s a metaphor,” said Hazel Lancaster, the lead public health nurse. “In that case can I have another piece of metaphor?”
With that, Apollina felt the ice was broken sufficiently for her to dive into her proposal.
Systems of Care Are Good Things, Except… “Raise your fork if you are tired of building systems of care here in Kenyon County,” Apollina said, and saw raised forks and suspicious looks. “And yet how many of you wish we had a better way of working together when people have complex needs?”
More forks were raised, and the expressions changed to a mix between curiosity and incipient boredom.
“Okay, so what are the problems with the systems of care we’ve had over the years, including the one I helped put together in the nineties?”
Slowly, the answers came out:
“We spend more time talking with each other than with the people we serve.”
“People have to be labeled twice to get help – no one wants to be called a ‘multi- problem family.’”
“No one is sure who’s in charge when we’re supposed to be working together.”
“There’s always a limit on enrollment. We might cap the project at 30, but then there are 50 people who need help.”
“We make up these rules in advance about who’s in and who’s out, but a lot of times we don’t know who needs special help until we get to know them. And if they don’t exactly fit the rules for being in the ‘special help’ pool, we’re stuck figuring out how to help them on our own.”
“There are just too many hoops to jump through before someone can actually get some help.”
“The project runs out before the need gets completely addressed. We raise hope only to drop it again when funding or personnel run out.”
“Each of our attempts at having a system of care has only lasted as long as the people who set it up stayed in their positions. Whenever a key member left we were back to square one.”
Apollina listened carefully as each person shared their concerns. Then she asked, “So why do you keep trying?”
Kerry Pope, who Apollina had brought in to resolve issues in the child welfare division, said, “It’s simple. Because when we’ve worked together we’ve helped kids and families have better lives. That would never have happened if we were doing things on our own. What we’ve done may not be perfect, but it’s better than not even trying.”
“So, I think you are saying that systems of care are good things, except when they’re not. Maybe that means we need to build our next one differently,” Apollina said. Then she pointed to the layers in the one piece of cake remaining in the pan. “I wonder what would happen if, like we do with this cake, we started with the pineapples and cherries rather than the batter.”
Shifting to a People First Design “Instead of creating a special but limited space where a group of our service agencies can work together, and then selecting the folks who can be helped in that space,” Apollina said, “we might begin by looking at how needs are distributed in our community and focus on improving all of our agencies’ abilities to respond more flexibly and naturally to complex and changing individual, family and community needs.”
Here’s what Apollina was getting at:
When health and human services planners agree that specific needs in specific communities are their focus of concern and that their task is to begin by understanding the people with those concerns, collaboration becomes people-driven. This means leaders and planners should work to understand people’s experiences of their needs, how the needs are changing over time, what drives the emergence of the needs, where the people with these needs are, how their situations vary, how they are doing currently and what they feel would help them do better. In 1970, one author put it this way in the context of responding to the needs of people with mental illnesses:
“At times like these, researchers are, or should be, thrown back to the first principles of description and classification, trying to see what the mentally ill are experiencing in the world and how they move about and what factors are associated with changes in status (clinical, economic, residential, etc.). Researchers should begin by studying lives: how they change, what remains constant, and most important, how the persons involved (especially the mentally ill person) shape the outcomes of interest. If we do not return to these first principles of social and clinical science, we face the unflattering possibility of distorting both the scientific endeavor and the policy-making process.”1
Ten years later, Jerry Elder and Phyllis Magrab offered a similar observation in their ground- breaking book, CoordinatingServices to Handicapped Children: A Handbook for Interagency Collaboration. In the opening chapter, they point out that because the situations they studied “varied so much from community to community, along with the environment in those communities … [t]here is no set prescription or model that can be given or followed in a step-by-step fashion and applied to every community. Each community has its own unique characteristics, needs, political and geographic boundaries, and problems, and its own members are best prepared to address these issues and develop efficient, collaborative service delivery.” 2
This is people-first, or population-based health planning. There are many definitions of a population-based approach. Here’s one example:
“A population-based approach addresses the health care needs of a defined population of patients instead of providing just-in-time illness care to individuals. Population-based health care ensures design and delivery of evidence-based interventions that address the full continuum of care while monitoring performance results and encouraging changes in practice patterns to optimize patient outcomes.”3
When leaders start from a people-first perspective, they expand their organizations’ capacities to flexibly respond to emerging situations, such as teen suicides, frail elderly people with multiple and complex diagnoses and treatment regimens, children in foster homes, or those exposed to lead paint, or families where the parents have told their pediatrician that their children have behaviors that they cannot manage. This approach can also be applied when people in certain geographic locations are experiencing difficulties caused by the impact of local determinates of health, such as compromised and inadequate water supplies, excess heat, lack of fresh food, or the collapse of the local economy.4
The Collaboration Trap In the following decades, the system of care movement expanded until most counties and states in America had some kind of collaborative interagency operation. However, research on the outcomes produced by these arrangements showed mixed results.
For example, eighteen years after Magrab and Elder’s book, Charles Glisson and Anthony Hemmelgarn published the results of a longitudinal study to assess the effect that increasing inter organizational services coordination had on child and family outcomes.5 The abstract of that article summarized the results of their study in this way:
“Findings show that organizational climate (including low conflict, cooperation, role clarity, and personalization) is the primary predictor of positive service outcomes (the children’s improved psychosocial functioning) and a significant predictor of service quality. In contrast, inter-organizational coordination had a negative effect on service quality and no effect on outcomes.”6 (emphasis added)
A year later, Leonard Bickman and his associates published the results of a multi-year study of a large-scale system of care in Ohio that was done as a follow-up to an earlier evaluation of a care coordination system in a federal demonstration project at Fort Bragg. The Ohio study compared youth who were served through the system of care with another group who received services without care coordination. In addition, the authors were also able to track a third group who did not receive any services at all. The abstract of that article summarizes their findings in this way:
“While access to care, type of care and the amount of care were better in the system of care, there were no differences in clinical outcomes compared to care received outside the system. In addition, children who did not receive any services, regardless of experimental condition, improved at the same rate as treated children. Similar to the Fort Bragg results, the effectsof systems of care are primarily limited to system-level outcomes but do not appear to affect individual outcomes such as functioning and symptomatology.”7 (emphasis added)
In 2016 Mick Cooper and his associates published a comprehensive review of the past twenty years of research on the impact of interagency collaboration. They initially examined over 4,000 articles on the topic but were only able to find 33 that were useful and reliable for purposes of comparison. The authors summarized the results of their review as follows:
“Outcomes were mixed, with some findings indicating that interagency collaboration was associated with greater service use and equity of service provision, but others suggesting negative outcomes on service use and quality.”8
One of the difficulties that tended to undermine many of the system of care efforts was initially identified by Glisson and Hemmelgarn. They found that:
“In areas where coordination increased, caseworkers relinquished responsibility across the board [for activities associated with delivering quality services] based on the incorrect but expedient assumption that they would be assumed by the service coordination teams.”9
This is the collaboration trap. Sometimes when communities try to get multiple systems to work together, the result is not many hands make light work, but instead, too many cooks spoil the broth as collaborative partners spend more time interacting with one another than they do with the people their agencies are supposed to be serving.
What Works? Because they found that interagency collaboration works sometimes and doesn’t work other times, Cooper’s group identified the factors that seemed to promote and inhibit effective collaboration:
“The factors most commonly identified as facilitating interagency collaboration were good interagency communication, joint trainings, good understandings across agencies,mutual valuing across agencies, senior management support, protocols on interagency collaboration and a named link person. The most commonly perceived barriers to interagency collaboration were inadequate resourcing, poor interagency communication, lack of valuing across agencies, differing perspectives, poor understandings across agencies and confidentiality issues.”10 (emphasis added)
While most states and counties find it difficult to put all of the positive elements in place at the same time while avoiding the negative ones, a review of the literature provides some suggestions for strategies that communities can use to improve the effectiveness of their collaborative efforts within the existing constraint
Better organizational climates. Effective individual agencies have line staff who are able to collaborate naturally with staff from other agencies when a particular client’s needs require it. This is the perspective that Glisson and his associates took. They developed a systematic approach to improving organizational climate and have demonstrated that those improvements do result in better outcomes.11 They found that a positive organizational climate produces many of the attributes that Cooper, et al., found to be necessary for effective cooperation. Even though people who work in supportive environments generally produce better results, efforts to establish positive environments for human services workers are often short-changed as leaders struggle to manage the pressures of workload, resources, and increasing expectations.
Better information systems. Another strategy for improving the effectiveness of direct services is to incorporate tools that provide real-time feedback to practitioners so that they can see what’s working and what needs improvement. One system for implementing this approach was developed by Leonard Bickman. He and his associates have helped agencies create and implement management information feedback systems (such as dashboards) so that clinicians and managers can use continuous quality improvement techniques to gradually advance the outcomes that their systems are producing.12 The challenge with this approach is that even though many sites are buried under documentation requirements, they still lack fluid, flexible and well-designed information systems. This presents a classic ‘missing the forest because of the trees’ dilemma. As documentation increases, the ability to use data for effective decision- making gets buried under the weight of the forms that have to be filled out.
Blended funding. A third strategy is to link coordinated care with service funding through blended funding and the development of a carve-in or carve-out care management organization for people with complex needs, such as families with children who have severe emotional disorders. Wraparound Milwaukee was one successful pioneer using this approach.13 The challenge with this option is getting all of the stakeholders in the systems to agree to blend funds and to accept the autonomy and power of the care management organization to make critical decisions about service access, including the use of residential treatment. These arrangements can be difficult to compose in a way that is big enough to matter initially. Many sites may substitute a blended pool of flexible funds that are used around the margins of the service system while leaving out the larger funding decisions such as residential care. Over time this makes the original effort irrelevant to the big issues of each system. If leaders in a community don’t have the political will to “go bold” with their first blended pool, it is difficult to maintain as budget pressures increase and each new wave of leaders have a different idea about what the community’s priorities are and how they should be addressed.
Health Homes. A fourth approach takes advantage of the flexibility provided under the Affordable Care Act by establishing specialized health homes for children with severe emotional disorders. In a thoughtful and well-researched policy paper, David de Voursney and Larke Huang from SAMHSA have described the necessary elements of a health home that would meet the needs of a child or youth with a severe emotional disorder. They summarize their recommendations in this way:
“We define a health home as a care arrangement that maintains a continuous relationship with a young person and their family, provides a set of services that are central to the health care needs of the child or youth and their family, serves as a central point for the coordination of behavioral and physical health services and other supportive services inside and outside of the health sector, provides or coordinates culturally and linguistically competent care, and takes responsibility for the broader health and wellbeing of the young person being served.”14
Some of the challenges with using a health home model as the basis for establishing a system of care include finding a way to bridge the gap between health care and life care, working out the time and timing issues so that health care professionals can be fully engaged in the integrated approach – as opposed to marginalizing health care until it is a commodity that only needs to be accessed as an add-on when needed, and structuring the model so it has the solid feel of a true and present physical entity rather than an ephemeral collection of processes.
Underlying Challenges of System-First Designs Even though these strategies show promise, high quality implementation is often beyond the capacity of many community human service systems. But even in locales that have the political will, resources, talent pool and capacity to implement one or more of these options, their efforts may still be weakened by the limitations of top down, system-first designs.
Top down models start by focusing on the system partners who will be part of the collaborative, and then establish specific circumstances for eligibility and rules for service delivery. For example, many systems of care for children and families require multi-system involvement combined with a diagnosed mental disorder as a basis for enrollment. These systems may also have strict limits on the number of youth and families who can be served and require that all enrolled families have teams that meet the same minimum number of times and that include the same membership categories.15
While Cooper’s article indicates that some states and counties using system-first designs have been able to address issues of shared responsibility, provide purposeful collaboration, and help enrolled individuals and families by providing a single point of contact, individualized and integrated plans of care and efficient access to treatment and services, these arrangements still present several challenges:
First, requiring individuals or families to be labeled “multi-system” for them to enter a system of care can say more about the services in a community than it does about the people to whom the label is given.
Second, the labeling needed to enter the system of care can cause more distance between the helper and helpee and result in the people receiving services becoming objectified. Individuals may become known as “mentally-disordered, multi-system clients” rather than our neighbors or fellow citizens with complex needs.
Third, even in specialized interagency settings that seem to be working, the people referred to these settings usually continue their original system ties. If the people who are enrolled in the specialized system of care are still connected with, or have mandates under other categorical programs in the community, the issues of interagency competition identified by Glisson and Hemmelgarn may be exacerbated. Lines of authority, responsibility and communication can break down over time and turn into a contest between the collaborative group and the home system in which a family or individual is lodged. Some sites resolve this by reducing engagement through a hand-off process from the primary care provider when the specialized program steps in. While this can lessen friction during the period of engagement, it often makes reconnection with primary services difficult when the individual or family’s period of engagement with the specialized service ends.
Fourth, specialized and highly resourced services tend to have limited enrollment capacity, so that even if they have successful outcomes with the specific individuals and families that have been admitted to the program, they often aren’t able to serve many of the other people in the community who also have similar complex needs. This can result in a feeling of increasing cynicism by the line staff from the various home systems who see the specialized effort as irrelevant to the needs of many of the people that they serve.
Finally, it assumes that there is a coherent subgroup of people in a community who are involved in multiple systems, when in fact heterogeneity is the rule. Thus the children who a pediatrician sees that have needs than span traditional categorical systems are often different from the youths that a juvenile probation officer is working with, and the frail elderly person with multiple needs that a public health nurse visits may be different from other older patients being seen in oncology, diabetes or rheumatology clinics. This heterogeneity means that the social determinates of health underlying the complexity of each person or family’s needs will vary, as should the response being made to those determinates.
An alternative to a top-down approach to designing a system of care might be one that harkens back to Elder and Magrab’s emphasis on the importance of locality and flexibility.
Creating Responsive Healing Spaces Because the people living in communities have many different kinds of needs and many different ways of seeking and benefiting from assistance, and because those needs are changing all the time, for communities to be vibrant and healthy they need a wide variety of flexible and responsive healing spaces. For these spaces to serve the community effectively they should also be sufficiently inter-connected so that each person or family with complex needs can obtain the combination of assistance that is right for them.
This means that good healing spaces should provide: geographic proximity, so that people can get to the space quickly; resource deliverability, so that once in the healing space, people can quickly receive the help they need; and interoperability, so that helpers from multiple spaces can easily mesh efforts when needed.
Healing spaces should also be responsive, respectful and most importantly anchored to the cultures, identities and lives of the citizens who will be entering into them and have the capacity to adapt the assistance provided to fit with the characteristics of the individuals and families seeking help.
Not only do healthy communities need multiple and diverse healing spaces, the nature and structure of those spaces, the rituals for entering and engaging healing within them, and the ways the operation and upkeep of these spaces are sponsored and supported must also be able to change and adjust over time to match the people they are welcoming and the needs those people bring with them.
Healing spaces are not clinics or addresses, but instead should reflect a mutual, cross system commitment to creating and maintaining pathways to assistance so that people with complex needs are able to find the right amount of response to produce relief in the shortest amount of time. These spaces should be thought of as people, agencies and other community resources who together make an intentional commitment to follow certain practice patterns designed to produce a desired result. The point is not to enmesh everyone in the same bureaucracy but to find a way for them to all operate on the same or at least compatible wavelengths. That way unique acts of partnership can emerge as needed in ways that fit the equally unique situations of the people who are being helped.
Balancing Structure and Soul Attempting to increase flexibility in a system of care creates a dilemma. On the one hand communities need large infrastructures to gather resources and distribute them equitably across multiple locations, which creates pressure for uniformity in practice, accountability, and resource access. But on the other hand, the push for uniformity and accountability makes it difficult to match the help offered through these resources with ongoing changes in the nature and distribution of complex needs in the community.
One size fits all can end up meaning that no one has a resource that truly fits them.
Balancing top-down prescription with bottom-up promotion so that evolving systems of care can avoid the collaboration trap and nurture the emergence of approachable healing spaces in every locality requires a strategy that can manage both large-scale resource distribution and accountability with indigenous responsiveness – a strategy that can balance structure and soul.
One way to create this balance is to start by reimagining the mental model of how systems of care are designed. This involves shifting from hierarchical system designs that mandate care to a new perspective that focuses on building networks to organize care. This change underlies many of the current developments in technology from smart cars and energy grids to finding places to stay and ways to get from one place to another.
Nesting People-First Design in Networks of Care People-first design means listening to the concerns of individuals and families in a community and to their vision for what would be better. But their message can be lost in the long transition from local, community-anchored activism to state level implementation.16 To overcome this dilemma, system implementers must devise protocols to insure that local determinates of health and well-being are quickly and accurately identified and addressed, without strangling these efforts by excessive limits on who can be served, who can provide those services, and how those services can be delivered.
Shortening the time between need identification and service response and increasing the response bandwidth so that new and different needs can be addressed swiftly before they overwhelm a community presents a big challenge.
To respond to this challenge, communities need a platform for their system of care designs that:
Gathers, and aggregates and updates concrete data about the nature and extent of felt need in the community:
Alerts both those with the needs and those who are available to respond to those needs about the situation;
Cross references data about needs with potential services, supports or other forms of assistance that might be useful in the response;
Provides a forum for assembling a collaborative response to complex needs; and,
Generates connections for accessing the formal and informal resources needed to implement the responses.
Traditionally, both public and private organizations have used top-down models like enterprise architecture to support their collaborative infrastructures. 17 But emerging companies like AirBnB and Lyft use a different, bottom-up approach to generate their platforms. They use networking, virtual infrastructure and maximized customer choice to manage their operations. Like them, reimagined approaches to improving the integration and impact of human services should focus on growing emergent networks of care.
So that a network of care can quickly collect, analyze and respond to a community’s needs, its operational platform should be able to incorporate all of the key elements of a community’s service and helping opportunities in a holistic representation that captures both the evolving needs of the people and families in the community and the interrelationships that exist among the formal and informal healing spaces that currently exist to meet those needs.
Perhaps the best way for a community to improve its ability to get the right help to the right people at the right time and in the right way is to take advantage of advances in information technology by building multi-modal, multi-nodal, inter-connected, and responsive networks for identifying, generating, distributing and coordinating its resources for help and healing.
Each of these elements can help strengthen the flexibility and effectiveness of a system of care:
Multi-modal: The representation of the community’s healing and helping spaces in the platform should mirror the different types of helping activities in the community including all of the formal and informal types of assistance that are present or are hoped to be present in a community, from housing and transportation, to wellness program, to primary health care, to time banks, to specialized care. Somewhat analogously, AirBnB and Lyft maintain constantly updated maps of the rental and transportation options in a given location that maximizes choice for someone looking for a place to stay or a way of getting around.
Multi-nodal: Modes describe the various ways help happens in a network of care. Nodes show the points where the various pathways of helping intersect. The platform for a network of care should capture these connection points as they emerge or become identified, including the best ways for a person or family to link with specific individuals, organizations and other resources who provide or support healing and helping efforts in a community. As with AirBnB and Lyft, a person seeking help should be able to quickly sort through helping options in the same way they would decide whether they wanted to rent a condo, a spare bedroom or a whole house and elect whether to ride there in an SUV or a hybrid.
Inter-connected: The platform for a network of care should be able to identify the nature of the formal and informal relationships between the modes and nodes of the network, reflecting where good help and connections exist and where better ones are needed, how they operate, and how they are changing over time. Each of the various spaces should be able to produce a reliable pathway to healing without making that pathway more important than the person entering the space. To stretch the AirBnB and Lyft analogy a bit further, the network should be able to identify the current distribution of service options across neighborhoods to guide the development of new options, and describe differences and similarities in access and exit rituals for a given type of option to improve the usability of each resource. (For example, does the host leave the key for the apartment in a box, or do guests have to meet with the host before checking in? Do guests strip the beds or put the towels in the washing machine before leaving?).
Responsive: The platform for the network cannot be a static representation but instead should have the capacity to continually update, grow and incorporate additions and changes in modes, nodes and connections as well as input from the community, consumers and providers about what is needed, what is working and what needs to work better. AirBnB and Lyft can easily add new hosts and drivers but also have systems for rating the quality of the services that existing hosts and drivers provide and respond to suggestions for new types of services. Both platforms grew organically from very small beginnings to include broad geographic areas and a wide range of services.18
If this seems to be an impossible level of infrastructure to imagine, let alone build, consider how easy it now is to identify a place to stay in almost any community in the world using programs like AirBnB that will tell you whose place it is, what it looks like, whether it matches with the type of home or room you are looking for, how other guests have evaluated the place, what the hosts are like, and even tells the hosts something about the people who are inquiring about a place to stay.
A well-connected network of care would be a platform where multiple helping and healing opportunities are linked and customized according to the needs and wishes of the people and families that need help. In this way, it would let everyone in a community find the right help at the right time as efficiently as a person can find a good place to stay for their next vacation.
Starting with the Basics “We’re talking about human lives and not just vacation stays,” said Chris Cooper, the grizzled, head of Kenyon’s family advocacy organization, after Apollina had shared her ideas for re- imagining their system of care as a bottom-up network.
“Absolutely, Chris,” Apollina said. “I don’t want to rush into anything. We need to reconnect with the community at the same time we are working to re-invigorate our agencies after they’ve gone through so many disruptions. But how about if we start by re-asserting the basic values we want to see expressed as we put things back together?”
With that Apollina’s team, who began to call themselves the Pineapple Express, developed a work plan for developing and implementing a set of shared values to inform the way their new network of care would be constructed. For some it felt like the work over the following months was duplicating efforts that had taken place in the past. But for most the inclusion of population-based planning and the emphasis on creating a model that could flex its targets and response protocols based on changing needs in the community was exciting.
Using community generated values statements as a frame for their system operations required more than simply adopting a list. It meant that each manager had to spend time with both their clients and their staff listening to their perceptions of what was working and what could work better. They had to talk to people in the wider community to identify areas of need that the current system was not addressing effectively. They had to find an organization willing to host the new platform for gathering an accurate and responsive network of need expression and response resources in the county and the technical support for designing and assembling the interactive database.
The Pineapple Express Team agreed that when establishing a statement of shared values, less was more and that efforts should be made to assure that the language reflected a covenant between the helpers and helpees and other members of the community who were working toward the same goals.
In the end, they came up with ten principles to support consistency and alignment as modes, nodes and connections were added to their network of care, and its responsiveness was measured and improved.
Here’s what they proposed:
Coordination Counts: Our network of care helps individuals, families and our community deal with complex life challenges through well-coordinated action plans that build on strengths to meet the critical needs that are the driving forces underlying those challenges.
People Participation: Effective action plans must be developed with the active participation of the individual, family, or community members involved and be reflective of and responsive to their voices and choices.
One to One Responsiveness: Every individual, family and community situation is unique, and plans to help those involved deal with complex life challenges should be equally unique, with solutions, services, assistance and strategies that are well-aligned with the situation, culture and preferences of those individuals, families or community members, and take into account ways in which poverty, trauma, or other circumstances may have impacted them.
Learning Lessons from First Efforts: Our action plans are tools for learning as well as helping. Once we commit to help an individual, family or group of community members, we pay careful attention to what is working and what needs to work better and use that ongoing input to adjust the plan as needed until the individual, family, or community group has surmounted the obstacles for which they sought assistance.
Everyone Can Help: Based on the story of the individual, family, or group of community members, and with their permission we may invite additional people or organizations from our network who are likely to be useful in dealing with the obstacles that have been identified. These people or organizations may be sources of formal or informal assistance and support, both.
Form Follows Need: When individuals, families or organizations identify a situation that affects the well-being of large groups of people in our community, or the well-being of the community as a whole, the network of care may convene a collaborative action forum to devise a community-wide action plan that builds on the strengths and cultures of our community.
Welcome, Help, Learn, Improve: The basic process we follow in developing action plans for individuals, families or community members who present their concerns to the network of care is:
Welcoming. We begin by welcoming the individuals or families or groups who are presenting a concern, taking the time to hear their story, and from that story identifying their expressed and hidden strengths and/or those of the community surrounding them, inferring potential driving forces underlying the area of concern, and formulating a brief statement of how things would be if the concern were to be effectively addressed that will serve as the guiding mission and call to action for the effort.
Helping. We bring together additional people or organizations as needed to develop and implement a strength-based action plan to address one or more of the underlying driving forces affecting the people who come to us for help.
Learning. We monitor the implementation of the plan and make adjustments as necessary to improve its effectiveness with an ongoing commitment to do whatever it takes to finally resolve or manage the identified concern.
Improving. We develop a follow-up plan as needed to provide for ongoing support to the individual, family or group of community members, and/or to support the continuing efforts of the community to keep the identified concern in check when the individual, family or group of community members is near to accomplishing the mission that was formulated.
Open Access with Continuous & Participatory Review: The network of care will provide opportunities for interested individuals to become trained to facilitate strength-based action planning. Those who complete the training will be listed on the network as potential resources and can be chosen by individuals, families or community groups to coordinate a response to the concern that they are posting. As with all resources listed in the network of care, available action plan facilitators can be rated by those who use them. Facilitators can indicate the type of concerns they have helped individuals, families or community-groups address and note whether they are offering their services on a voluntary basis or if they charge a fee.
Everyone is an Investor: The network of care is a stand-alone non-profit entity. Its operations and resources are supported by joint contributions from organizations committed to improving the health and well-being of the community including health care organizations, insurance companies, school districts and the community’s human services agencies. It is hosted by a neutral organization with a sufficiently large information technology infrastructure to support the network’s platform. The network is curated by a community board with diverse representation and operated by staff hired by the board. Allocations from the network toward the implementation of action plans
is done according to guidelines developed by the board, with smaller allocations automatically approved and larger commitments requiring board approval.
Option Versus Substitution: The network of care supplements and supports the efforts of the community’s health care and human services agencies but does not replace them. Most help happens through the ongoing efforts of those other groups. The network is there to respond quickly and efficiently to emergent community issues and challenges, to provide a resource for individuals and families whose needs and concerns fall between the cracks in the current array of human services, straddle multiple services leaving primary responsibility unclear, or present such complex challenges that a coordinated effort is needed to develop and implement a creative solution to the situation.
Conclusion: Not So Much Rules as Guidelines
It was a start, but Apollina and the Pineapple Express Team had to cook up a lot more cakes, pineapple and otherwise, before they felt like they had a viable recipe for the new design. One of the challenges was to help each service agency concentrate on establishing or re-establishing its own positive organizational culture but to do it in a way that supported spontaneous and flexible cooperation with a wide variety of other resources depending on the needs of a given individual or family.
“The difference,” as Fred put it when he met with the mayor to explain what was going on, “is that in the past we would spend a lot of time getting a select group of agencies to work together. It was like belonging to a club with a bunch of rules. We helped a quite a few kids and families, but we missed many others because we didn’t always have the people in our club that we needed, or important club members would drop out, or because we didn’t have room for all the people the club wanted to help. Now we sort of got rid of the membership hassles. If a doctor has a patient that could use some extra help, she taps into the network and pulls together the folks that are needed to deal with that patient’s specific situation. Same for one of my juvenile officers or a teacher or a social worker.
“So, there are no more rules?” The mayor said, looking skeptical.
“Well, we don’t so much have rules as guidelines,” Fred answered after a short pause. “You see, we’re all one cake, but in it there are many pineapples.”
“You realize that I have no idea what you’re talking about, don’t you Fred?”
“It’s a metaphor, Mayor. Just a metaphor.”
* * * * * * * * * *
1 Lewis, D.A. (1990). From programs to lives: A comment. American Journal of Community Psychology, Vol. 18, No. 6.
2 Elder, J.O. & Magrab, P.R. Coordinating Services to Handicapped Children: A Handbook for Interagency Collaboration. Baltimore: Paul Brookes, p. 3.
3 Rychnovshy, J. (2003). Population-based health care. Journal of Pediatric Health Care, v. 17, n.
3, pp. 154-156 at 154.
4 Cf. Block, R.W. (2015) Recognizing the importance of the social determinates of health. Pediatrics, v. 135, n. 2, pp. e526-527. “There is an urgent need to recognize the importance of toxic stress, childhood adversities, and other social factors as we provide pediatric care to children. What good is providing routine care exemplified perhaps by giving an immunization, if a child leaves the office to continue living in poverty, with food insecurity, maternal depression, lack of affordable child care, violence in the home, drug abuse, and other adversities?
5 Glisson, C. and Hemmelgarn, A. (1998) The effects of organizational climate and interorganizational coordination on the quality and outcomes of children’s service systems. Child Abuse and Neglect, v. 22, i. 5, pp. 401-421.
6 Ibid, p. 401.
7 Bickman, L., Noser, K., and Sommerfelt, W.T. (1999) Long term effects of a system of care on children and adolescents. The Journal of Behavioral Health Services and Research, v. 26, n. 2, pp 185 – 202, abstract quote at 185.
8 Cooper, M., Evans, Y., &Pybis, J. (2016) Interagency collaboration in children and young people’s mental health: a systematic review of outcomes, facilitating factors and inhibiting factors. Child: Care, Health and Development, v. 42, n. 3, pp. 325-342, at 325.
9 Glisson and Hemmelgarn, op. cit., p. 417.
10 Cooper at 325.
11 See, for example, Glisson, C. and Shoenwald, S.K. (2005) The ARC organizational and community intervention strategy for implementing evidence-based children’s mental health treatments. Mental Health Services Research, v.7, pp. 243-259; Glisson, C. and Green, P. (2011) Organizational climate, services and outcomes in child welfare systems. ChildAbuseand Neglect, v.35, i. 8, pp. 582-591; and Glisson, C. & Williams, N.J. et al. (2016) Increasing clinicians’ EBT exploration and preparation behavior in youth mental health services by changing organization culture with ARC. Behaviour Research and Therapy, v.76 pp. 40-16.
12 See, for example, Bickman, L. (2008) A measurement feedback system (MFS) is necessary to improve mental health outcomes. Journal of the American Academy of Child and Adolescent Psychiatry, v. 47, n. 10., pp. 1114-1119; and Bickman, L. (2012) Why can’t mental health services be more like modern baseball? Administration in Policy and Mental Health Services Research, v. 39, n. 1, pp. 1-2.
13 Kamradt, B. (2000) Wraparound Milwaukee: Aiding youth with mental health needs. Juvenile Justice, v. 7, n. 1, pp. 14-23.
14 De Voursney, D. & Huang, L.N. (2016). Meeting the mental health needs of children and youth through integrated care: A systems and policy perspective. Psychological Services, v. 13, n. 1, 77-91, at page 79.
15 The impact of strict limitations on access to specialized services was discussed in detail in Miles, P. & Franz, J. Apollina Smith and the Amazing Exploding Triangle: A Cautionary Tale on the Hazards of Large Scale Integration of Human Services. (1995) Available on line at: http://paperboat.com/images/stories/ArticleArchive/Apollina%20&%20the%20Triangle.pdf. The current article is an expansion on the ideas presented in the Amazing Exploding Triangle article in light of 21 additional years of experiences with systems of care.