Guest Blog: Having A Mental Illness Or Being A Care-Giver Doesn’t Necessarily Make You A Good NAMI Board Member

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(7-24-17) Turmoil over this year’s NAMI election and its “big tent” vs “small tent” debate are still reverberating and have caused a former board member to offer his thoughts about how the nation’s largest, grassroots mental health organization should be run.)

NAMI Leadership – A Thought Going Forward

by  Graham L. Champion (Board member 2009-2010)  

NAMI has just concluded its national convention in Washington, DC, during which, five new members of the 16-member board of directors were elected. The run up to this year’s election was one of the most divisive and contentious in recent memory. A tenant of NAMI Board elections is that the candidates refrain from active campaigning both directly and also through the use of surrogates.

That tenant went out the window this year.

A spirited debate is normally a very good thing when members of NAMI are considering who will lead the organization. However, the debate should focus on issues and philosophy and not become personal. Personal attacks have a way of carrying forward and taint the important work the Board should be focusing on.

Having served on NAMI’s National Board several years ago (albeit for a short time), I want to offer some perspective and suggestions for the consideration of NAMI’s Membership and more specifically for NAMI’s Board of Directors. NAMI should in my humble opinion consider the following changes.

NAMI’s Board should be a policy Board and not a management Board.

NAMI is a national organization with a large membership and a relatively large budget. Part-time, volunteer Board Members need to let the professional staff do the jobs they were hired to do without day-to-day interference. Micromanagement does not serve the organization well. The Board needs to set policy and not be involved in the day-to-day execution and management of the organization. If the staff is not getting the job done – that the Board expects – in a timely and professional manner, then it should replace the ineffective staff. If the Board (or an individual Board Member) wants to be involved in the day-to-day process they should resign from the Board and apply for a job. No manager can do an effective job if he/she is constantly being second guessed by a committee (Board).Click to continue…

Poor Choice Inviting Governor McAuliffe To Speak About ‘Solutions’ Two Weeks After He Okayed Execution of Seriously Ill Prisoner

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(7-17-17) The National Council on Behavioral Health and Janssen Pharmaceuticals have made an unfortunate choice in featuring Virginia Governor Terry McAuliffe as a speaker at a State of Mental Health Care: Challenges and Solutions forum being held tomorrow (Tuesday – the 18th) at The Newseum in Washington D.C..

Less than two weeks ago, Gov. McAuliffe refused to stop the execution of a 35 year-old man diagnosed with a serious mental illness. He could have spared William Morva’s life by commuting his sentence to life in prison without the possibility of parole.

Instead, McAuliffe served up a twisted version of a Nuremberg defense.

A cynic might accuse the governor of not wanting to irk one of the most powerful lobbying groups in the state, the Virginia Sheriff’s Association (Morva murdered a sheriff’s deputy) or suggest McAuliffe didn’t want to possibly jeopardize his future chances as a potential Democratic presidential candidate by appearing soft on crime.

(Let’s not forget that former President Bill Clinton interrupted his 1992 presidential campaign bid to oversee the execution of Ricky Ray Rector, a brain damaged prisoner who asked his Arkansas prison guards not to remove his food tray from his cell – while being led into the death chamber – because he’d left a piece of pie there that he would finish later.)

If the National Council and Janssen had wanted to invite a governor who is a true mental health reformer, they should have asked Ohio Governor John Kasich.

Instead, they got a governor of a state that was listed last year by Mental Health America as being among the ten worst in the entire nation at providing mental health care.

Since McAullife assumed office in January 2014, the number of women with serious mental illnesses being held in Virginia jails has jumped from 16.13 percent at the end of 2013 to a whopping 25.79 percent. The number of incarcerated men with mental illnesses has increased from 12.64 percent to 14.35 percent. Yet, there are fewer than nine mental health courts or speciality dockets in the entire state, jail pre-release programs are virtually non-existent, Housing First and Act teams are rare, there are long waiting lists to see community therapists and half of those who show up at community mental health centers have no health coverage.

But it is McAuliffe’s actions in two recent horrific Virginia cases that should shame him from showing his face at tomorrow’s forum.

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Excerpt: Atlantic Profile Of Tom Insel Well Worth Reading – Smartphones Collecting Mental Health Data.

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(6-30-17) I subscribe to The Atlantic and admire its often courageous and always thoughtful journalism. It recently published a profile of Tom Insel, former head of the National Institute of Mental Health, whom I first met in 2006 after my book was published when he asked me to speak at NIMH.  A favorite at mental health conventions, Insel is one of the kindest and most thoughtful advocates whom I’ve had the pleasure of knowing. Here’s an excerpt.)

The Smartphone Psychiatrist

Frustrated by the failures in his field, Tom Insel, a former director of the National Institute of Mental Health, is now trying to reduce the world’s anguish through the devices in people’s pockets.

Published in the Atlantic. Written by:DAVID DOBBS

Sometime around 2010, about two-thirds of the way through his 13 years at the helm of the National Institute of Mental Health (NIMH)—the world’s largest mental-health research institution—Tom Insel started speaking with unusual frankness about how both psychiatry and his own institute were failing to help the mentally ill. Insel, runner-trim, quietly alert, and constitutionally diplomatic, did not rant about this. It’s not in him. You won’t hear him trash-talk colleagues or critics.

 Yet within the bounds of his unbroken civility, Insel began voicing something between a regret and an indictment. In writings and public talks, he lamented the pharmaceutical industry’s failure to develop effective new drugs for depression, bipolar disorder, or schizophrenia; academic psychiatry’s overly cozy relationship with Big Pharma; and the paucity of treatments produced by the billions of dollars the NIMH had spent during his tenure. He blogged about the failure of psychiatry’s Diagnostic and Statistical Manual of Mental Disorders to provide a productive theoretical basis for research, then had the NIMH ditch the DSM altogether—a decision that roiled the psychiatric establishment. Perhaps most startling, he began opening public talks by showing charts that revealed psychiatry as an underachieving laggard: While medical advances in the previous half century had reduced mortality rates from childhood leukemia, heart disease, and aids by 50 percent or more, they had failed to reduce suicide or disability from depression or schizophrenia.

“You’ll think that I probably ought to be fired,” he would tell audiences, “and I can certainly understand that.”It was unsettling—as if the kindly captain of the world’s biggest ocean liner had sat down with his guests at dinner one evening and told them that their ship was unexpectedly lost and, if the crew could not soon correct course, they might well run aground, founder, and die.

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Mental Health America’s Paul Gionfriddo’s Important Story: Losing Tim

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(7-11-17)  First printed in 2012, Paul Gionfriddo’s personal story about his son, Tim, remains both a moving personal story and a critical examination of what’s wrong with our broken mental health care system. I appreciate his willingness to share it. You can listen to a free Podcast version here.) 

How I Helped Create A Flawed Mental Health System That’s Failed Millions—And My Son

By Paul Gionfriddo, President and CEO of Mental Health America, reprinted from Health Affairs. Excerpts from his book, Losing Tim.

If you were to encounter my son, Tim, a tall, gaunt, twenty-seven-year-old man in ragged clothes, on a San Francisco street, you might step away from him. His clothes; his dark, unshaven face; and his wild, curly hair stamp him as the stereotype of the chronically mentally ill street person.

People are afraid of what they see when they glance at Tim. Policy makers pass ordinances to keep people who look like Tim at arm’s length. But when you look just a little more closely, what you find is a young man with deep brown eyes, a sly smile, quick wit, and an inquisitive mind, who—at the times he’s healthy—bears a striking resemblance to the youthful Muhammad Ali.

Tim is homeless. But when Tim was a youngster, toddling around our home, my colleagues in the Connecticut state legislature couldn’t get enough of cuddling him. Yet it’s the policies of my generation of policy makers that put that adorable toddler—now a troubled adult, six feet, five inches tall—on the street. And unless something changes, the policies of today’s generation of policy makers are what will keep him there.

How It Went Wrong

I was twenty-five years old in 1978 when I entered the Connecticut House—two years younger than Tim is today. I had a seat on the Appropriations Committee and, as the person with the least seniority, was assigned last to my subcommittees. “You’re going to be on the Health Subcommittee,” the committee chairs informed me. “But I don’t want to be on Health,” I complained. “Neither does anyone else,” they said. So that’s where I went. Six weeks into my legislative career, I was the legislature’s reluctant new expert on mental health.

I knew next to nothing about it. My hometown of Middletown, Connecticut, though, was home to one of Connecticut’s three state psychiatric hospitals. It sat high on a hill overlooking the Connecticut River. As a high school student, I’d gone there once to play my accordion at a party for patients. Most of them were older, but there was one young woman about my age. She seemed terribly out of place. I felt the same way.

The 1980s was the decade when many of the state’s large psychiatric hospitals were emptied. We had the right idea. After years of neglect, the hospitals’ programs and buildings were in decay. But we didn’t always understand what we were doing. In my new legislative role, I jumped at the opportunity to move people out of “those places.” Through my subcommittee, I initiated funding for community mental health and substance abuse treatment programs for adults, returned young people from institution-based “special school districts” to schools in their hometowns, and provided for care coordinators to help manage the transition of people back into the community.

But we legislators in Connecticut and many other states made a series of critical misjudgments that have haunted us all ever since.

First, we didn’t understand how poorly prepared the public school systems were to educate children with serious mental illnesses in regular schools and classrooms. Second, we didn’t adequately fund community agencies to meet the new demand for community mental health services—ultimately forcing our county jails to fill the void. And third, we didn’t realize how important it would be to create collaborations among educators, primary care clinicians, mental health professionals, social services providers, and even members of the criminal justice system, if people with serious mental illnesses were to have a reasonable chance of living successfully in the community.

During the twenty-five years since, I’ve experienced firsthand the devastating consequences of these mistakes.

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Q and A With Mental Health America’s Paul Gionfriddo: The B4Stage4 Initiative

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(7-10-17) I recently asked Paul Gionfriddo, the President and CEO of Mental Health America, if he would answer a series of questions for me. Thankfully, he agreed.)

Question 1: People sense a new vitality at Mental Health America. Tell us what made you agree to take charge of MHA?

Mental Health America is an amazing place to work, with incredibly gifted and energetic staff people and affiliates across the nation who are making a real difference. Four years ago, I was happily working from home, writing my policy memoir (Losing Tim) and taking occasional consulting jobs to help pay the bills. My wife, Pam, who was and still is the CEO of MHA of Palm Beach County, came home each night, and listened to my stories about how I’d fix the mental health system that had failed Tim so badly. When the MHA position came along, she said, “you’d be perfect for this.” David Shern (former MHA CEO) also strongly encouraged me to apply. When I talked to the search committee and Board, I told them that there were other organizations working in the deep-end space, but that we needed a national advocacy organization to do more upstream – early identification, early intervention, and health/behavioral health/education/workplace integration. My story – and I’m sticking to it – is that they had 100 qualified candidates for the position, and only got to me after first considering the other 99. But ultimately this approach made sense for them and for me, and so here we are.

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Question 2. You describe your family’s struggles with your son, Tim, in your article, How I Helped Create A Flawed Mental Health System That’s Failed Millions (which I will post Tuesday.) What can you tell us today about your relationship with your son?

Like so many others, Tim went through a lot – in school and afterwards – as someone living with a serious mental illness that emerged during early childhood. I love Tim deeply, as I love all my children. I am constantly amazed by his resilience in the face of schizophrenia. I am in awe of his patience in dealing with the challenges and roadblocks to independence and recovery that have been put in his way during this past quarter century and trapped him in the revolving door of occasional hospitalization, frequent incarceration, and chronic homelessness. He and I share a sense of humor, and have always had a good relationship during our most troubling times. Of course, he calls far too infrequently, and worries me far too frequently. When I tell him this, he just laughs, and says “I’m fine, Dad.” Typical 32-year-old.

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NAMI’S Future: Dr. James Hayes: “Her family got to plan a graduation and not a funeral!”

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(7-7-17) When I closed my eyes during James Hayes speech at the NAMI convention, I was whisked back to the days when I was a child and my family used to attend church revivals in Oklahoma. His speech, the last in this week-long series, was delivered with the enthusiasm of a evangelical preacher. I was not surprised when he was re-elected to another term on the board because his passion for NAMI came through loud and clear.  

Dr. JAMES HAYES – NAMI Is Filled With Everyday Heroes

It is hard for a boy from South Carolina to do a 5 minute speech in less than 12 minutes but I’ll try. dr hayes

We know about mental illness as we have 4 adult children, 3 of whom live with serious mental illness and 2 wonderful grandchildren who live with autism.

We know mental illness across the ages! NAMI has been a life saver for us.

We know about serious mental illness because we live with it every day!

I am a retired Pediatric Oncologist and when I started in 1972, 30% of children with cancer survived. Now in 2017, 92% survive.

We can do that in mental illness!

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