Would a Republican President Dare to Dismantle Obamacare?

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dawesarticle

This year marks a critical juncture for our country – one that presents both opportunities and challenges for health reform, and will determine whether or not we embrace the traditions of the past 150 years and move toward a more equitable, accessible, and patient-centered health system. What is most concerning today is that if we do not pay close attention to our history of comprehensive health reform, the remarkable gains we have fought so hard to attain over a century and a half, could be wiped out, moving us backwards in terms of health care coverage, access, delivery, and equity.

The Supreme Court, in its history, has never overturned a major health law, but we watched with bated breath whether the Court would do so this time around with the Affordable Care Act – a law more sweeping than previous health legislation and which incorporated broader civil rights protections. Fortunately the Supreme Court has so far followed contemporary precedent regarding health laws, but how could we be sure the Court wouldn’t do what a prior Court did in 1883 when it overturned the Civil Rights Act of 1875? In both instances when the Supreme Court ruled in favor of upholding the Affordable Care Act, the Court punted the demise of this law to the political process, arguing “[m]embers of this Court are vested with the authority to interpret the law; we possess neither the expertise nor the prerogative to make policy judgments. Those decisions are entrusted to our Nation’s elected leaders, who can be thrown out of office if the people disagree with them. It is not our job to protect the people from the consequences of their political choices.”

Now with the Supreme Court settling the constitutionality of the Affordable Care Act, history affords us an opportunity to understand whether it is even possible six years after a major health law has been implemented to completely dismantle it via the political process. The answer is a resounding yes! Contrary to the belief held by many proponents of the ObamaCare law that Republicans are bluffing about their attempts to repeal the Affordable Care Act or that it could never happen at this point, that simply is not the case. 150 years ago, the Freedman’s Bureau Act was signed into law after the Civil War affording blacks and others access to health care across the country, especially in the South. However, seven years after this law was enacted, having survived every reauthorization, Congress decided to shut it down indefinitely – jeopardizing care to our nation’s most vulnerable people.

The Affordable Care Act is a test of whether we will go back 150 years to a time in our nation’s history when there was no appetite to implement a law overwhelmingly helping groups that were marginalized or uphold a law that would have elevated rights and protections for vulnerable populations. It is very clear that this is the first health reform statute in recent decades allowed to stand, but just like the Freedman’s Bureau, which lasted only seven years … if we are not careful, ObamaCare could see a similar fate.

I was quite hopeful that partisan political attacks on ObamaCare were subsiding when the Republican-led Congress passed the Medicare Access and CHIP Reauthorization Act (MACRA) one year ago, which reauthorized most of the programs that were in the Affordable Care Act. In fact, the MACRA legislation even expanded some of the ACA policies such as delivery and payment system reforms, making it in essence the health reform extension bill. However, the political backlash escalated again when the Supreme Court upheld ObamaCare once more last summer in 2015.

150years150 Years of ObamaCare explores the hidden backstory of the Affordable Care Act, shedding light on the creation and implementation of the greatest and most sweeping equalizer in the history of American health care. I wrote this untold story to draw back the curtains and offer an insider’s look into the crafting of the health reform law and provide an unprecedented review of the health equity movement past, present and future.  I wanted to develop a resource highlighting the little known leadership efforts over the past 150 years to push for mental health reform, minority health reform, and universal health reform and how and why these efforts were successful this time around.

150 Years of ObamaCare highlights how and why the health reform law became the most inclusive law ever passed by Congress, not only in terms of its content, but in terms of the process - the stakeholders who were brought to the table, including racial and ethnic minorities, LGBT individuals, women, people with disabilities, and veterans. The book also highlights what we have left to do to ensure these reforms are not only implemented, but implemented in a manner that will greatly benefit all of our communities.

I wrote 150 Years of ObamaCare so that current and future generations of health equity advocates, students, and scholars can learn from our efforts, build upon our successes – understanding what strategies we employed and why, what challenges we faced internally and externally, and how we overcame them.

I also wrote this book to help leaders across our nation, whether in health care, public health, policy, and in other areas gain a better understanding of this landmark law – overcome some of the challenges it presents and leverage the numerous opportunities that are available.

Those who continue to oppose the Affordable Care Act would, undoubtedly, be on the wrong of side of history just like those 150 years ago who opposed and worked to effectively undermine a law intended to provide access to medical care to African Americans and other groups. 150 Years of ObamaCare highlights this historic inflection point, and what is at stake after November 2016. 

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dawesDaniel E. Dawes is a healthcare attorney and the Executive Director of government relations, health policy, and external affairs at Morehouse School of Medicine. In addition to his executive role, Daniel is a director of health policy and a lecturer of health law and policy at the Satcher Health Leadership Institute and holds a faculty appointment in the Department of Community Health and Preventive Medicine. During the negotiations around health reform, he founded and chaired the National Working Group on Health Disparities and Health Reform, a working group of more than 300 national organizations and coalitions that worked to ensure that the health care reform law included health equity provisions to reduce disparities in health status and health care among vulnerable populations. In recognition of his efforts, he was one of 13 experts who were invited to serve on the Health Equity Leadership Commission, which provides guidance on implementing health reform to members of Congress, the Obama Administration, and officials at the Department of Health and Human Services. He is a frequent speaker and author of several publications on health reform and health equity. He is the author of the new book, 150 Years of ObamaCare (Johns Hopkins University Press).

Behind Enemy Lines - Exploring Resilience

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army
Morning Zen ~ Scott Bryant-Comstock ~ 

It’s early, the sun not yet on the horizon, the blue mist of a morning promise in the air. It’s cold enough that my breath is making vapor plumes – not good for a 10-year-old commando on a mission. The elements of stealth and surprise are critical if this mission is to be successful. I’ve got to calm my breathing – the dash from across the street took the wind out of me. My destination is ten yards away, but those ten yards might as well be ten miles.

During the summer of my tenth year, most days were spent in front of the house with my neighborhood friends playing War – a game where we pretended to be soldiers, just like Sergeant Saunders from the television show Combat! We would choose sides and battle for hours, drawing up intricate attack plans, leading commando raids against other warriors, and terrorizing them with great delight. Then they would lead a charge against us, and we would battle fiercely, dying dramatic deaths, lying still for a few moments and then leaping up to engage in combat all over again. I spent many an afternoon crawling on my belly, reveling in great imaginary acts of heroism, as only a 10–year-old boy can.

Growing up in a neighborhood where the families living around us had money while we were living on stale bread and puffed rice, resulted in some unusual situations. For a 10-year-old boy, fitting in and feeling “normal” was important. So when a bill collector came to our house looking for money or a public-utility truck came to turn off service for lack of payment, it could ruin an otherwise great day – especially if I were standing in front of the house with my friends.

Some days, utility trucks might come down the street three or four times. Ducking for cover when they did make their way toward our house became an almost comical routine for me. As soon as one of the trucks appeared coming down our street I would make a beeline for the house, flinging open the back door and locking it behind me. Then, I would dash over to the kitchen window, heart racing, and watch for the arrival of the utility truck. If the truck stopped at our house, I would crouch under the kitchen window, stealing glances every once in a while, checking to see what was going on outside, feeling ashamed and knowing that I would not go back outside for the remainder of the day.

If the utility truck continued by the house, I would wait a few minutes and come back outside to rejoin the game. Someone would invariably yell, “Hey Comstock, where did you go? Jeeze, ya can’t just leave in the middle of war!” I’d make up some vague excuse and leap back into battle, Kids being kids, my seemingly bizarre actions would soon be forgotten, and the war would rage on.

Ten yards, that’s all I need. But there is movement in the house, and I’ve got to get under the window without being seen. Making my way out of my temporary hiding place behind the bushes, I inch my way across the lawn, flat on my belly, pushing in front of me the two empty milk jugs I have brought with me. My t-shirt and jeans are instantly soaked but its too late to turn back. My heart beats wildly with excitement. Looking up, I see someone’s shadow reflecting off of the drapes covering the window. I hear voices from inside the house. Darn, they’re up already. I hadn’t counted on that.

Now, it wasn’t too bad when the power company showed up to turn off the electricity, because the meter box was on the side of the house, out of view of the street. But the water company – oh, man, that was tough. The truck would pull up and park right next to the main, which was directly in front of our house. It always seemed like the guy would sit in the truck for an eternity before getting out. Once out, he would go to the back of the truck and pull out a long metal rod, about four feet in length, with a funny looking end on it, sort of like a cross. Slowly, he would saunter around the truck, tapping his rod on the ground, making his way over to the water main.

I’m pressed against the wall under the window, soaking wet, but thrilled just the same. I reach up to the spigot to disconnect the hose. Cold morning and cold hands – this is harder than I thought. I make two attempts to undo the connection but fail. My hand stings with pain each time I try to wrest loose the fitting, but I’ve got to get that hose off. On the third attempt, the hose loosens. Pulling my hand away from the spigot, I notice blood oozing from an inch long slice on my palm.

The guy from the water company was cool because he could remove the thick concrete plate that covered the water meter with ease. As if performing live theater, he would wait until the crowd of pre-adolescent boys had gathered around and then would remove the concrete cover. Everyone would press together to be able to see what lay beneath. I would even find myself straining to see from my private spot in the kitchen, peering through the window in the space created by moving the drapes to one side, ever so slightly.

With the hose fitting off the spigot, I bring the first milk jug up close to the opening and give the handle a full turn. The sound of the water running is deafening, or at least it appears that way to me, so I quickly turn it off. Maybe if I turn it on slowly. Much better. I hold the milk jug at a 45-degree angle and slowly fill it with water.

One jug filled and capped, working on the second. The gash on my hand stings from the cold. Lulled into a daydream about my “commando raid” and the “life-threatening shrapnel wound” I have received, the sound of hard rapping on the window above me jars me to my senses.

Hey there, what are you doing?” Oh jeez, it’s Mrs. Baber, and she looks pissed. “Hey, hey, stop that! What are you doing?”

Grabbing the two jugs, I stumble to my feet and run for it in an all-out sprint. Looking back while running across the lawn, I see water pouring from the spigot. I also see Mrs. Baber’s front door beginning to open. In my panic and haste, my feet tangle and I fall to the ground, losing my grip on one of the milk jugs. As I hit the ground, the jug slides across the lawn and into the bushes. For a split second time slows to a crawl as I lie flat on my back watching the water gurgling out of the jug at a dreamlike pace. The sound of Mrs. Baber’s voice yelling at me brings me back, and I realize I have to get away. I grab the remaining jug lying by my side, pull myself up and dash across the street, the sound of Mrs. Baber’s angry voice trailing in my ears. I fling open the gate to our side yard, scoot in and slam it shut. Leaning against the fence, safely back from behind enemy lines, I lower myself to the ground, letting out a long slow sigh of relief.

On those occasions when we had no running water in the house, it was my job to make sure there was at least enough for Mom to be able to freshen up before heading off to work in the morning. Asking neighbors for water or riding up to the gas station on my bike to fill up empty milk jugs was not a viable option – much too embarrassing. No, the best option was to raid the water supply of unsuspecting neighbors, several within a stone’s throw from our house. The predawn hours of early morning offered ideal conditions for such a raid. The street would be quiet, the air calm, and visibility muted at best. Perfect conditions for a 10-year-old commando on a secret mission behind enemy lines.

Quietly letting myself into the house, I tiptoe to Mom’s bathroom and fill the commode tank with the jug of water. The house is still, no one will be up for at least another 30 minutes. Time enough for one more raid.

Back outside I peer over the fence on the side of our house and see that Mrs. Baber has gone back inside. It’s too risky to try her house again. Bringing the milk jug up close to my chest I begin making my way down the street, darting from house to house, using my best commando skills to search for the perfect target. This time, I will not be seen.

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Do you have a first-person story of resilience you would like to share with Network readers?

Send it in!

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

 

With the Love of Music

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Morning Zen Guest Blog Post ~ Leah Bennett ~

I was born in Birmingham, Alabama in 1998. My home was a cheap, run down apartment complex. It was also the home of drug deals, murders, and meth labs. I lived with my African-American dad and my white mother in a completely black community where my mother and I, with my lighter skin, got stares every time we left our home. My mother was an alcoholic, and we often got into car wrecks. I lost my two front teeth in a car accident. I didn’t get to celebrate like other kids when their teeth fell out. The tooth fairy didn’t visit me. Instead I waited at the police station with my dad for my mom to be bailed out of jail.

Two weeks after my 6th birthday my dad passed away from leukemia. My mom started smoking cigarettes again, her drinking increased dramatically, and she became addicted to prescription pills. She would often pass out and I would wash the vomit off of her face, and put a warm towel on her head. When she had the energy to leave the house, she would either leave me at home alone, or take me with her. We made trips to the houses of men who were strangers to us both, and I would sleep on the floor next to the bed, or on the couch alone in fear while she gave herself away.

My grandmother knew about the drug addiction and alcoholism. I would call her late at night when my mom was passed out and she’d come pick me up quietly and take me home with her. I always ate plenty at her house as there was never food in my home. She must have told my school, because one day in 3rd grade I was called into the principal’s office. A social worker was there and asked me about my home life. I didn’t want to get my mom into trouble, so I lied about almost everything, until they asked about food. She asked me to name every food we had in our house but I couldn’t because our fridge was mostly bare.

My grandmother would take me to school everyday and pick me up. She was like a mother to me. One weekend my grandmother and I drove past my school and saw a billboard that read, “Violin Lessons”. My grandmother immediately asked if I wanted lessons, and thank God my seven-year-old self said ‘yes’. The next week, I was signed up for the school orchestra. It was a brand new program at my inner-city school. On the first day the room was packed with maybe 70 kids. By the second day we all received our instruments, but there were half of us left. By the end of that week, the orchestra consisted of a 3rd grade cellist named Isaiah, and me. Our teacher remained upbeat though.

Within two weeks however, our school ended the program so I began to go for lessons at my teacher’s house after school, and it saved me. I will never forget her determination to share music with Isaiah and me. She was so in love with the music, and I had never seen someone so passionate about their job before. Instead of worrying about my mom, or our future, I fell in love with youtube videos of famous violinists that my grandmother would show me. I wanted to be the girl performing on the stage, clad in a beautiful dress, making people feel things they’d never felt.

On June 27th, 2007, two months before my ninth birthday, I woke up at my grandma’s house. My grandma yelled for me to come downstairs because my mother was on the phone. When I heard my mom’s overly cheerful voice on the line, I knew something was off. She said she was quitting smoking and drinking and wanted to start over and make life good for us. She said she had to shower and that she’d be over in an hour to pick me up and that we’d go straight to the park and then get ice cream. I was ecstatic. After an hour passed, I took my bag outside and waited on the front porch. Another hour passed, but I wasn’t upset because my mother was always late. More hours passed and it got dark outside. My mom wasn’t answering her phone. Later that evening my grandma got a call. She started crying, and I knew immediately what had happened. I had been anticipating it forever. She hung up and asked me if I wanted to stay or go, and I said stay. She told me I was a good girl, and left. They had found my mom dead in the bathtub—she had overdosed. I blamed myself. I wasn’t there to take care of her, to put a cold wet towel on her head, to throw the pills away.

Soon after, my aunt and uncle from Ohio came to Alabama for the funeral and I learned that they would adopt me. I started fourth grade in my new home, joined the school’s orchestra, and began to take private music lessons. My new parents encouraged me to make goals for myself, and presented me with as many musical opportunities as they could.

leahviolin
Music is something that can’t desert me, or be taken away from me. It never changes. I’ve been playing violin for 10 years now. I want to share my gift with as many people as possible and make a career out of what I love. Today I struggle with severe depression, ADD, and anxiety. It has been difficult at times to achieve good grades, but I attend therapy because I’m determined to beat my mental illness. I’ve been suicidal, and almost hospitalized, but I’ve overcome it. I know I have something to offer the world and I’m learning my worth. I’m a violinist, a pianist, a percussionist, a guitar player, composer, a beginner cellist, and a vocalist. I’ve been teaching violin and piano for three years and would love to teach in the future as well. My past experiences have made me a stronger musician, and I’ve learned to harness my illnesses through music. When I play, my ADD disappears, and I’m able to concentrate clearly. My anxiety melts and my depression fades when I’m deep in a piece of music. When I feel useless, when I can’t stand myself, I remind myself that I have a gift that others do not. Music is magic, it heals, and if I had not discovered it on a car ride with my grandmother so many years ago, I don’t know where I’d be today.

This piece was originally Leah’s college application essay.

leahLeah Bennett is 17 and lives in central Ohio, U.S.A, with her adopted parents and young brother. She is a senior in high school and will be attending Wittenberg University in the fall, where she plans on studying music.

Special thanks to Kusi Okamura, Editor, The Wild Word, for encouraging the sharing of this story.

Special thanks to Kusi Okamura, Editor, The Wild Word, for encouraging the sharing of this story. - See more at: http://www.cmhnetwork.org/media-center/morning-zen#sthash.dZCUVMmA.dpuf

The Affordable Care Act at Five Years: Where Is Prevention?

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Morning Zen Guest Blog Post ~ Deborah Klein Walker

Five years in, the Affordable Care Act (ACA) has improved the delivery of health care in the United States. But more could be done, especially in preventing disease and promoting wellness, if we are to have a healthier nation in the next generation.

First, let’s take a look at some of the success of the ACA. Almost 17 million more Americans have been given insurance coverage and 31 states have expanded their Medicaid programs for the people who are most vulnerable in their states, resulting in a drop in the uninsured non-elderly population to 12 percent. Second, although the United States spent about $3 trillion dollars in total national health expenditures in 2014 and has the highest cost per capita for health care for all industrialized nations, there has been a slowing of the cost curve for U.S. health spending. Major ACA payment reform initiatives for Medicare, including incentives to hospitals to reduce readmissions and infections, have reduced Medicare spending per beneficiary to a rate below inflation.

Millions of dollars are being spent to transform the health delivery system by integrating all parts of health systems, called Accountable Care Organizations, for both Medicare and Medicaid patients. In addition, states are serving as laboratories for health care transformation via the State Innovation Model grants and waiver options awarded to state Medicaid agencies. Many of these efforts include reforming the primary care system by creating medical and/or health homes, integrating behavioral health into primary care, and enhancing care coordination for patients with chronic conditions. All of these efforts are important and will most likely lead to better quality health care and health outcomes for patients. But to truly achieve better health at lower costs, we’ve got to address all aspects of health, and that includes preventing disease.

One emphasis of the ACA in the past five years has been on assuring that all evidence-based health screenings and other clinical preventive services are implemented. For example, the ACA includes a mandate that all insurers must pay for any clinical preventive service that receives an “A” or “B” recommendation by the United States Preventive Services Task Force. The Centers for Disease Control and Prevention 6|18 initiative is a collaboration with purchasers, payers and providers to accelerate the implementation of 18 evidence-based interventions for a patient within and outside of the clinical setting in six high-burden health conditions through reducing tobacco use, controlling asthma, controlling blood pressure, preventing healthcare associated infections, controlling and preventing diabetes, and preventing unintended pregnancy. That’s a start. But it won’t get us all the way there.

The United Health Foundation’s state rankings for access to health care and chronic disease prevention strategies reveals that there is great variation in states in uptake of immunizations and chronic disease prevention (e.g., whether a patient had a blood pressure screen or a cholesterol check). All the prevention indicators varied by income, race/ethnicity, education and location in the country. States in the Northeast performed much better on these measures than states in the Southeast. Hispanics report receiving less preventive services than non-Hispanic blacks and whites.

The problem? There has been little emphasis on addressing the root causes of poor health by investing in prevention in community settings. Better health for individuals and communities depends on a variety of factors, such as having clean and safe water and food, clean air, as well as safe places to play and exercise. Community-wide campaigns that focus on positive health behaviors are one effective strategy to support and create environments for individuals and families that supports wellness. However, less than 5% of $3 trillion dollars spent on U.S. health care funds public health and related community-based prevention or population health efforts. To date the Prevention and Public Health Trust Fund has provided nearly $5.25 billion (less than .01% of the total health care costs) in additional resources to communities for prevention of disease and promotion of healthy lifestyles.

A new Centers for Medicare and Medicaid Services demonstration effort, called Accountable Communities for Health, is an important step in coaxing health care systems to embrace the larger community in which patients live. Recipients of these new ACH grants are required to connect with public health and community-based organizations to facilitate efforts that will improve the health of the entire community. In addition, several of the State Innovation Model grants (e.g., Oregon, Minnesota, Vermont and Colorado) funded by CMS to state Medicaid agencies have embraced the creation of community health organizations as well. In one case in Oregon, health insurer Trillium is giving $1.33 per member per month to the county health department for community prevention activities in its coordinated care organization. Other insurers should follow this example and dedicate part of their budgets to public health and community providers of population-wide prevention services.

Prevention with a focus on the social determinants of health in a community needs to be an emphasis of the ACA in the next five years. If we fail to do this, the United States will continue to struggle with expanding health care costs and suffer from poorer health outcomes compared to other industrialized nations.

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walkerDeborah Klein Walker is a Vice President and Senior Fellow at Abt Associates. She is the current president of the American Orthopsychiatric Association and a former president of the American Public Health Association and the Association of Maternal and Child Health Programs. She served as Assistant and Associate Commissioner for 16 years at the Massachusetts Department of Public Health. The opinions expressed are her own and do not reflect those of Abt Associates.

This article was featured on the Huffington Post website, March 7, 2016

 

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lisaLisa Lambert is the executive director of Pa

- See more at: http://www.cmhnetwork.org/media-center/morning-zen/child-psychiatrists-or-unicorns-which-one-is-harder-to-find#sthash.vzv98xMU.dpuf

Deborah Klein Walker is a Vice President and Senior Fellow at Abt Associates. She is the current president of the American Orthopsychiatric Association and a former president of the American Public Health Association and the Association of Maternal and Child Health Programs. She served as Assistant and Associate Commissioner for 16 years at the Massachusetts Department of Public Health. The opinions expressed are her own and do not reflect those of Abt Associates.

Ask me a question, I’ll tell you a story

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Morning Zen Guest Blog Post ~ Lisa Lambert

lambertI felt a wrench in my heart when I stopped running support groups.  It wasn’t the late nights or trying to make each one worthwhile.  It wasn’t even that I had some version of burnout (I didn’t).  It was missing out on the next installment of everyone’s story.  I knew by then that even the parents who seemed to have things under control were often living a version of Mr. Toad’s Wild Ride.

There was Joe, who worked in construction and got up in the dark every morning, yet drove around several nights each week trying to find his 15 year old son.  He knew his son was using a variety of drugs and he also knew if he could keep him safe for a few more weeks, there would be a slot in a program for him.  There was Annabelle whose son, Bobby, tried to jump out of 2nd story school window when he was 9.  She fought to get him in a therapeutic program and when she finally did, her own mental health problems surged up.  There were Rick and Susan, who problem solved like crazy to make sure their daughter graduated high school.  She would only eat one kind of pizza, sold several towns away, so they would drive those miles several times each week to avert the obsessive, restrictive food focus that bled into other parts of her life.

I wondered if Joe’s son got into the program and if it helped.  I worried that Annabelle was so exhausted from fighting for services and wellness for her son that she had no energy left to battle for herself.  I fervently hoped that Rick and Susan – who did so much to get that diploma – got their daughter into a college and that she stayed enrolled.  And I wondered if they all thought about my story and my son’s journey, too.

Support groups are ground zero for telling your story.  There is no wrong way to share it.  You can make it short and hit the high points.  You can ramble, cry, smile and pick up the thread.  You can tell it all at once or in installments.  Others will nod, maybe comment or offer help and you know they are your comrades in arms, fighting the good fight with you.

Talking about your experiences in a support group can be therapeutic.  Others can see where you sailed through and where you were flying by the seat of your pants.  They might jump in and point you to resources you need or suggest strategies you haven’t thought of.  You learn what parts of your story make others sit up and nod and what parts don’t get the same reaction.  While you are getting help, you are also learning to tell your story.

For many of us, there comes a time when you decide to tell your story publicly to someone else.  Maybe it’s a journalist, maybe it’s a legislator, maybe it’s an audience of people who’ve never raised a child with mental health needs.  You want them to understand, to be moved, to feel the injustice, the hurt and the determination to make things better.  You are willing to forgo your privacy and expose your pain in order to help the families coming along behind you.  You want to make a difference.

Storytelling is one of the most powerful tools we have.  It is the medium for translating emotions and experiences into action.  Personal stories can educate about challenges and inspire people to do something about them.  Leaders often call great stories “inspiring” while journalists call them “compelling.”   But most of us have to learn key storytelling skills.  We start by knowing we have a story to tell and it deserves to be told well.

When you tell your story in a more public way, you consider other things as well.  Your time (or print space) is limited, so you focus on what aspect you’d like to tell.  If you want to make a point about lack of services or too-high-to-jump-over barriers, you think of what would be most dramatic things to highlight.  Sometimes you choose the parts that are most likely to help the families coming along behind you.   As Patricia Miles writes, this is the first skill set of family partners: the decision to blend their private story with their public role.

Telling your story isn’t only about touching people or creating change in the system that serves our kids and families.  Just as the stories from Joe and Annabelle and Rick and Susan stayed with me, our stories stay with the people who hear them.  After someone hears a parent tell their story, I am often asked – sometimes a year later – what happened to that youth or those parents?  Did the young person get better or achieve their promise?  Did the parents leave those times of crisis behind and become able to step back a little?  Or if I was the one who told my own story they ask, How is your son doing?  We often have no idea who remembers us and who is rooting for us.  And that’s actually pretty cool.

Change, they say, happens one person at a time.  Just like storytelling.

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lambertLisa 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.

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

- See more at: http://www.cmhnetwork.org/take-mental-health-to-heart/we-dont-tell-you-lambert#sthash.iXnbDKDd.dpuf

Making History: Reflections on the National Rx Drug Abuse & Heroin Summit

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Nearly 2,000 people were gathered in Atlanta this week at the National Rx Drug Abuse and Heroin Summit. When the White House announced last week that President Obama would attend the Summit, affirming the request for $1.1 billion in the 2017 budget, it was clear that this year’s Summit would make history. It would make history not only in helping to turn the tide of the opioid and heroin epidemic but also in changing hearts and minds about all substance use disorders.  

Organized by Operation UNITE (www.operationunite.org), a nonprofit begun in 2003 in eastern Kentucky by Representative Hall Rogers, the Summit brings together government leaders and people working on the ground to address the prescription opioid and heroin epidemic. Participants include federal agency leaders, Congressional leaders, state and local leaders, health care professionals, pharmacists, third party payers, law enforcement professionals, advocates, prevention experts, researchers, family members, and people in recovery. Looking around a room filled with 2,000 people (1,200 last year) dedicated to addressing the opioid and heroin epidemic inspires awe for what a small nonprofit can mobilize in a relatively short time.

As the largest conference on opioids and heroin, Representative Rogers called the Summit the shareholders meeting for drug policy in the United States. In addition to the many people working on the ground in communities, this year’s shareholders included the Surgeon General; bipartisan Congressional leaders; and directors of the Centers for Disease Control and Prevention (CDC), Substance Use and Mental Health Services Administration(SAMHSA), Office of National Drug Control Policy (ONDCP), National Institutes of Health (NIH), National Institute on Drug Abuse (NIDA), Department of Agriculture (USDA), and Drug Enforcement Administration (DEA). It is awe inspiring to know that all of these leaders are in one place, all working together to solve the complex and devastating problem of opioid addiction.

At the same time, the need for this large-scale collective effort is heart wrenching in its demonstration of the scale of the problem. CDC Director Tom Frieden and others call the rise in opioid addiction and overdose iatrogenic. It is the result of the over-prescription of opioid medication since the introduction of Oxycontin in the late 1990s. There were 259 million prescriptions for opioids written in 2012 – enough for one bottle per person in the United States. Since 1999, 165,000 people have died from prescription opioid overdoses, and heroin overdose deaths have increased by 246%. In 2014, the latest year for which statistics are available, 28,647 people died from opioid overdoses. There are only two states where drug poisoning death rates show some decline from 2013 to 2014 – Florida and Nevada, as presented by CDC’s Frieden.  Almost all other states show increases.

The ongoing loss of life was demonstrated graphically by the CDC Life Counts Clock unveiled at the Summit. The Clock is a stark reminder that about every 20 minutes in the U.S. a new family is devastated by the grief of overdose death. For individuals at the Summit who have experienced the devastating effects of opioid addiction and overdose – those with opioid use disorders whether or not in recovery, and families of those who have lost their lives to overdose or are struggling to recover – there is acute awareness of the effort required to stop the clock and the pain of loss with each rise in the count.

The Summit facilitated discussion on a broad range of approaches to changing both the “supply” and “demand” sides of the problem. Efforts to implement Prescription Drug Monitoring Programs (PDMP), and change prescriber practices (non-opioid therapies for pain, start low and go slow, exercise caution when prescribing), as well as efforts by law enforcement to close pill mills, implement prescription drug take-back sites, and interrupt the heroin and fentanyl trade from Mexico and China represent change to the supply side. The CDC Guideline for Prescribing Opioids for Chronic Pain released last week provides the framework for the responsible use of opioid medications. All states other than Missouri have PDMPs, but legislation is still needed in most states to assure use of PDMPs and the quality and timeliness of the data they contain – such as required checks of PDMPs by prescribers, required data submission by dispensers within 24 hours, closing gaps in data such as those from methadone clinics, and interstate data sharing. By mandating the use of PDMPs in Kentucky, for example, provider use skyrocketed. Also, pharmacists, third party payers, medical education (early and often) – and the public – all have a role to play in reducing access to supply. There is still much to be done to educate providers, dispensers, legislators, and the general public.  

On the demand side, CDC's Frieden advocated for community awareness and support: Engaging and empowering communities, supporting patients and families, working together to prevent addiction and support recovery, and improving community structures – addressing the collective effects of zip code on life expectancy over genetics.

Relieving suffering and saving lives fall neither on the demand or supply side, except to the extent that these reduce the need to continue to use opioids. The tragedy of neonatal abstinence syndrome (NAS) was brought home by SAMHSA Acting Administrator, Kana Enomoto, in her description of her colleague’s adopted baby’s struggle with the consequences of prenatal opioid exposure. The need for 911 amnesty legislation to take the fear out of seeking medical help, and access to naloxone for overdose reversal by first responders, including families and friends who are the “first first responders” are key to reducing overdose deaths. The release of the autoinjector form of naloxone and availability through pharmacies will further this effort. Providing effective treatment, especially improved access to life-saving medication-assisted treatment (MAT) – methadone, buprenorphine, naltrexone, and leveraging the Affordable Care Act (ACA) and the Mental Health Parity and Addiction Equity Act (MHPAEA) to improve access to and quality of care is critical, yet in need of much greater refinement.

As NIDA Administrator Nora Volkow described, brain imaging is helping dispel false hypotheses and promote understanding of the differences in brain activity in persons affected by or vulnerable to substance use disorders. These advances help refine approaches to treatment, and are already informing the role of MAT for opioid use disorders, and relapse prevention post detoxification, post treatment, and post incarceration. However, access to MAT is still so limited and fraught with obstacles, that one could call these barriers criminal. For example, when the data demonstrate that MAT will dramatically reduce the likelihood of overdose post detoxification (when individuals are most vulnerable to overdose because their tolerance is greatly reduced), releasing individuals to their own devices – post detoxification, post treatment, post incarceration – without MAT and without the means to pay for MAT can be seen as a death sentence. There is so much work to be done.

Given the array of issues and problems presented across Summit tracks (Advocacy, Clinical, PDMP, Federal, Pharmacy, Prevention, Law Enforcement, Heroin, Third Party Payer), I longed for an effective public health model for substance use disorders, a roadmap for evidence-based implementation of prevention, screening, early intervention, treatment, and recovery supports everywhere. As an evaluator, I longed for goals and benchmarks. As someone who spent over a decade working with SAMHSA’s Children’s Mental Health Initiative, I was acutely aware of the absence of an organized family voice, and the absence of solutions to help persons with substance use disorders and their families with access to treatment. I was also acutely aware of the need to educate on the use of person-first language, awareness of stigmatizing language, and cultural and linguistic competence. I wonder, too, where the resources are for public awareness and education, and especially for reducing stigma. There is so much work to be done.

Hope is critical in recovery. Hope erodes with substance use disorders, for those using substances and for those around them. Yet hope and love are what motivate recovery. There is hope for getting the work done, for turning the corner of the opioid epidemic, and, for changing hearts and minds about substance use disorders as medical problems and not criminal or moral problems. Hope is in the $1.1 billion requested in the President’s 2017 budget. It is in the collaboration of leadership, the dedication of the 2,000 Summit attendees and their colleagues at home, and the voice of recovery by organizations such as Young People in Recovery represented by Justin Luke Riley on the panel with President Obama. This year’s Summit made history.

Summit presentations will be posted on the Summit website. President Obama’s participation in Tuesday’s panel discussion can be viewed here.

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brigitteBrigitte Manteuffel, PhD, is an independent consultant and Children’s Mental Health Network Advisory Council member. She serves on the advisory board for the National Family Dialogue for Families of Youth with Substance Use Disorders,  the leadership team for the Behavioral Health Hub of the 100 Million Healthier Lives campaign, the Heroin Working Group for North Georgia, and coaches families on CRAFT for the Partnership for Drug-Free Kids Parent Support Network.

Mothering Through the Darkness

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Morning Zen Guest Blog Post ~ MichiganMom

Parenting a teenager with depression has nearly broken me.  It has cracked me open, so that I thought the pieces would never come back together. But, like the daisies and coneflowers that I hack down to the ground in preparation for spring, the places that are cut are the places where new shoots grow.

I didn’t sign up for this. Hiding the knives. Locking up the household cleaners. Checking his room for anything sharp, for hidden meds he didn’t take. Noticing new cuts on his arms. Wondering if I will find him dead in his room in the morning. Sitting with him in the doctor’s office waiting for the results of the drug tests.

Letting go of the expectations and hopes and dreams. While other parents share proud news about their kids’ accomplishments–honors classes, sports achievements, a date to the prom–I am happy the stealing seems to have stopped. That he can, very occasionally, laugh again.

It is a heartbreaking thing to know that your child does not want to live anymore. This sweet soul who used to sing and dance around the house, to canter like a horse around the yard, to lead the neighborhood kid gang in complex games with plastic swords—now wants to die. Now he cuts himself just so that he will feel something. And nothing we do seems to help.

And it takes its toll. Living with a severely depressed person is like living with a black hole. When at its worst, everyone is sucked into the blackness. Nothing escapes. Nothing breaks through the darkness.

It takes a toll on the family, on the friendships, on the marriage, but most of all on me, the main caregiver, the mom. Most of the time I am able to marshal all of my forces and do what needs to be done, whether it’s monitoring his meds, giving a hug when I really don’t feel like it, or knocking on his door to see if he’s ok. Not to mention the endless appointments and phone calls: psychiatrist, psychologist (both an hour away), teacher conferences, school 504 meetings, family doctor, health insurance company, massage and physical therapy for the anxiety he carries in his body, and never-ending expensive trips to the pharmacy. It is like its own part-time job, and I don’t know how a parent could possibly have a successful career while trying to manage all of this, this endless list of stuff that your child desperately needs. On top of all that is the burden of the medical bills.

Most of the time I am able to push through. But sometimes, I hit a wall. Sometimes I shut down. Like the time he said, you can take me to all the therapist appointments you want, I’m not going to talk, I’m not going to try, it’s stupid. My face fell and something in me snapped shut like a clam. I went to my bedroom and did not make eye contact with anyone for 24 hours. I had to hide. I was sucked dry and weary to the bone.

It turns out parental love is not as unconditional as we thought. There is a breaking point. There are in fact many breaking points. Because we hide and we cry and pull our hair and if we’re lucky we talk to someone. But then we pick ourselves up off the bathroom floor and we go back.  And that—that is the courage, the heroic courage of the parent and the caregivers, the quiet warriors of our weary world.

It’s hard to find other parents of kids with a mental illness, because who the hell wants to advertise it? Oh, your kid is on the debate team? That’s great. My son was nearly institutionalized for being suicidal and I had to take away anything sharp and his belts from his room. Want to meet for coffee and chat about it? No, not likely.

Thank God when we hit bottom I had someone to reach out to. A desperate plea to friends to watch my 6 year old so I could take the teenager to an emergency therapist and doctor’s appointment after discovering evidence of just how much he wanted to die. I laid it all bare. Desperately. Just being able to share it and feeling supported kept me from sinking. But thank god again, one of the friends had a daughter who struggled with depression. We met for drinks. She introduced me to a private online group of moms of kids with mental health issues. It was such a comfort to know that I was not alone, that these moms get it, that I had a place to pour it all out to parents who had been there and survived. These parents are my lifeline and my heroes. It is critical for parents to have a supportive community of some kind, but the lingering stigma about mental health so often prevents this.

It’s still hard a lot of the time, though he’s doing really well right now thanks to a fabulous support team of doctors, a psychiatrist, a psychologist, family, friends, and community. Sometimes I fear that he will never fight his way through to have a “normal” life. Sometimes his irritability and moodiness make me want him to just go away. Sometimes I fantasize about having a sweet, “normal” kid, or no kids at all.

But it’s funny how the heart has to be cracked open in order to grow so much. There’s just no other way. I used to be judgmental of some parents of kids with behavioral problems. Out of sheer ignorance I often unconsciously blamed the parents. My heart is so much bigger now. Where there was judgment and annoyance now there is only love and compassion. Now I want to reach out to parents who are trying to cope and offer love and support (and alcohol). Now I want to love the kids and teens I see struggling. Now there is no such thing as other people’s children.

Soon I will dig up the hostas and the coneflowers and the daisies, and I will viciously slice them down the middle with my shovel, laying bare the white roots, the soft wet insides. And I will put them back into the dark ground, knowing that they will grow bigger for it.

Special thanks to Kusi Okamura, Editor, The Wild Word, for encouraging the sharing of this story.

Child psychiatrists or unicorns, which one is harder to find?

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Morning Zen Blog Post ~ Lisa Lambert ~

When the local mental health clinic abruptly closed last September, Cheryl knew she would have a tough time finding a new psychiatrist to treat her son.  Her 15 year old son is complicated, to start with.  He has several diagnoses, has uncommon reactions to medications and has had frequent ups and downs.  Shortly after she began searching, Cheryl realized the truth:  child psychiatrists with openings are nearly impossible to find.

The clinic closed with no warning and Cheryl didn’t have time to get a referral, make a plan or even grab her son’s records.  She scrambled just to stay afloat. She called every clinic and practice that her insurance covered.  Then she called the ones it didn’t cover.  She googled, she pored over lists and once, upon finding a number for the old psychiatrist, called it only to find it was the doctor’s home number.  That didn’t work either.  The old psychiatrist didn’t have a private practice and couldn’t prescribe through the now-closed clinic’s system any more.

It’s more than 6 months later and Cheryl is still looking for a psychiatrist.  Her son’s pediatrician has been reluctantly prescribing the same medications he was on last September when the clinic closed.  If anything changes – a new reaction, a new crisis – the pediatrician doesn’t think he has the expertise that Cheryl’s son needs.

For Cheryl and many other parents, child psychiatrists are scarcer than unicorns.  In popular culture unicorns are making a small comeback, appearing on t-shirts, in movies and songs.  In the real world they remain a myth.  The term unicorn has come to mean “any fabulous beast which many desire to find and possess, but which proves to be enormously elusive.”  You see the parallel to child psychiatrists, right?

The statistics back Cheryl’s experience up.  In 2014, a study published in the American Psychiatric Association journal Psychiatric Services showed that the average waiting time in major U.S. metropolitan areas to see a child psychiatrist was 25 days for a first visit. Investigators for the study tried to get an appointment with 360 outpatient psychiatrists in Boston, Houston or Chicago and found that after two calls, despite having insurance or saying they would be willing to pay out of pocket, appointments were nailed down with only about 25 percent of the doctors. According to the American Academy of Child and Adolescent Psychiatry, there are approximately 8,300 practicing child and adolescent psychiatrists in the United States — and over 15 million youths in need of one.

Besides the scarcity, there are other barriers.  Some psychiatrists aren’t taking new patients.  Others are leaving the field to pursue other interests.  Many others don’t take insurance of any kind whatsoever.  One mother called me several years ago to tell me she was trying to find a child psychiatrist for her teenage son.  She got a solid referral and was filled with hope.  When she called the doctor’s office she was told that he worked off a retainer system similar to an attorney.  You paid several thousand dollars up front and he billed against it.  When that was gone, you negotiated the method to pay once again.  She was shocked and called to ask if this was standard practice.

When child psychiatrists work at clinics, hospitals and medical groups, their services are available to anyone who has insurance accepted by that group, which often includes most health plans.  But many clinics have a policy in place which creates an additional obstacle.  Only children and teens who receive outpatient therapy at that clinic or medical group can access the services of the psychiatrist.  The thinking is that this will ensure that there is more coordination between the therapist and psychiatrist.  While some parents like this model, others report that the coordination simply doesn’t happen. And for children and teens who get therapy at an outside location, this policy limits the number of child psychiatrists available to help them.

Most pediatric medical specialists, such as pediatric cardiologists or pediatric endocrinologists, get paid a higher rate by insurance companies because they have the extra training and education needed to work with children and teens.  Unfortunately, this is not true for child psychiatrists.  The get paid the same rate as general psychiatrists.  Most child psychiatrists  go to college for four years to get an undergraduate degree, followed by four years of medical school, then four years of general psychiatry and finally a two-year fellowship in child psychiatry. A college freshman aspiring to be a child psychiatrist is looking at 14 years of training.  Their reimbursement doesn’t match that.

Parents value psychiatrists because they are highly trained and have greater breadth of experience at the end of those 14 years. When a child has uncommon reactions to medications, like Cheryl’s son does, a child psychiatrist can parse out whether the new symptom is the illness getting worse or a medication side effect.  They listen to parents talk about their child’s behavior and are great at figuring out how to prioritize this over that in the treatment plan.  They ask smart questions and are great observers.

With the passage of health care reform, our children get their yearly well child visits for free.  Their annual flu shots are not only free but you can often get them right away at a local pharmacy, a “minute clinic” or other options in your community.  None of this is true for mental health care by a psychiatrist.  Costs are high, waits are long and the search is filled with dead ends.  I think it might be easier for Cheryl to find a unicorn.  If she does, maybe she can trade it for a child psychiatrist for her son.

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

Social Emotional Learning no Substitute for Quality Teachers

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Many school systems are implementing system-wide social emotional learning (SEL) as a part of regular education instruction.  Some are also using measures, tests, to determine if the SEL is working. In a very recent New York Times article, Testing for Joy and Grit? Schools Nationwide Push to Measure Students’ Emotional Skills by Kate Zernike (2/29/16) it is reported that the National Assessment of Educational Progress (NAEP) will soon include measures of SEL.  According to the article, experts in the field are rightfully worried that the term SEL and its testing may be flawed and such testing should be addressed with extreme caution. Some also believe that SEL instruction is being interpreted as almost anything that is non-academic including effective classroom management techniques (such as the good behavior game). Others feel that some SEL instruction may be insufficient in improving attention and active learning when schools and their communities are both stressed and under-resourced.  

“There are so many ways to do this wrong,” said Camille A. Farrington, a researcher at the University of Chicago who is working with a network of schools across the country to measure the development of social-emotional skills. “In education, we have a great track record of finding the wrong way to do stuff.”  Classroom management strategies and SEL compliment each other and both may improve engaged attention and improved academic learning. They are not substitutes for highly proficient teachers, high academic expectations and adequately resourced schools. Furthermore, like academic instruction, SEL must be delivered with fidelity to “best practices” required by the curriculum’s authors. Let us make sure that we approach SEL student measurement with extreme caution!

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dwyer

Kevin P. Dwyer, M.A., a Nationally Certified School Psychologist, is an education and child mental health consultant.  He recently served as a principal research associate for the American Institutes for Research. For over 30 years he practiced school psychology in public schools and held several local, state and national leadership positions in the fields of mental health and education, being responsible for the design, development, implementation and evaluation of programs and practices, for improving school climate, safety, and wellbeing for the education, and mental health of children.  He has helped school staff in many districts use data to inform decisions on improving caring and connectedness with students and professional peers.  His work, publications, presentations, and practices have influenced public policy and the development of efficient, family focused collaborative child service systems.  During his 30 years as a public school psychologist he worked directly with over 10,000 children and their families as well as trained over 6000 educators. He provided psychological services to children, including those with disabilities and those whose anxiety and mental health problems blocked learning and adjustment.  He assisted teachers and staff in supporting a caring, inclusive school climate for all children.  In 2007 the Maryland Coalition of Families awarded Mr. Dwyer and his wife for their work in making schools more family friendly.  He served as president of the National Association of School Psychologist and was given its highest honor, the Life-time Achievement Award.  In 2000 he received the Tipper Gore “Advocacy award for improving the lives and mental health of America’s children” from the National Mental Health Association.

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