Pete Earley

 

(7-16-18) I posted four blogs by parents last week about the National Alliance on Mental Illness, the nation’s largest grassroots mental illness organization, and serious mental illnesses. The blogs were prompted by a telephone call from a consulting group helping NAMI develop a multi-year strategy. At the parents’ request, I shared their four blogs in advance with NAMI CEO Mary Giliberti. Today’s post is a response to last  week’s blogs. I will be posting one more blog this week on this topic written by an individual with mental illness. As always, I welcome your comments on my Pete Earley official Facebook page.)

Response from NAMI’s New Board President Adrienne Kennedy

First, allow me to the opportunity to thank Pete Earley, a person I have counted as a friend and colleague since we met in 2007 and someone I acknowledge as a respected mental health advocate and author. Thanks, for the space to share my family’s experiences, along side other determined and dedicated family advocacy voices which appeared in this blog last week, along with adding my NAMI perspective that my new role in the organization affords me.

On June 30, among the 15 of my board members peers, I was elected to serve as President of the NAMI Board of Directors for 2018/2019. I am honored and humbled to be provided the opportunity to represent the hundreds of thousands of families, peers and avid supporters who comprise this important movement. 

I have carefully read the blogs posted last week that were largely written by members of the National Shattering Silence Coalition (NSSC). I found each of them passionate and moving. Repeatedly, in each of the blogs, I was struck by how similar their experiences were to those of my family,

When I found NAMI in 2005, our son and our family had logged 6 years coping with serious mental illness: five hospitalizations interspersed with a few months or, occasionally, many months of recovery in between.   We were fortunate to have had many good experiences with excellent clinical care: great engagement and great doctors. Not withstanding the first four relapses, we thought we were moving forward, gaining the necessary insight and coping skills. It appeared that our son had secured a winning formula: trust, treatment, recovery.

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7-13-18) “Mark is an innovative leader who deserves recognition for his excellent work on the decriminalization of people with serious mental illness.” That’s how the National Alliance on Mental Illness described Mark Gale at NAMI’s 2017 national convention when he was presented with the Sam Cochran Criminal Justice Award. It was created to recognize “outstanding work in the criminal justice system to deal fairly and humanely with people living with mental illness.”

This blog is the final written by participants in a telephone call that was held by a consulting group helping NAMI develop a multi-year strategic plan. I first met Mark while researching my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, when a mutual friend introduced us. We both had sons who’d been arrested because of their mental illnesses. Like the great father that he is, Mark jumped into NAMI with both feet and today he remains  a tour de force in his home state of California. (Read more about him at the end of his open letter to NAMI. 

A Personal Note to NAMI by Mark Gale

Dear NAMI,

Sixteen years ago, when crisis was an almost daily occurrence and we were alone with no one to help guide us, we met very special members of our organization who were brilliant people and passionate about helping our family. We also found support groups to help us heal and Family-to-Family classes to educate us. I have served as a Board member both at the local and state levels and continue my work today as the Criminal Justice Chair of the NAMI Los Angeles County Council. 

NAMI you are my brand and I am dedicated to our work, which is precisely why I feel compelled to share some thoughts with you.

At last year’s Convention, even though I had walked the Hill, advocated strongly, and was nationally honored by NAMI, which was an incredible moment for me, I returned home feeling troubled.

There was a divisiveness amongst us that was apparent and I believe damaging to the organization that I love.

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(7-12-18) This is the third blog about a telephone call conducted by a strategic consulting group hired by the National Alliance on Mental Illness that was held with parents of individuals with serious mental illnesses. A majority of the individuals on that call were members of the National Shattering Silence Coalition. As always, I welcome your opinion about this issue on my Facebook page. ) 

Dear NAMI Leaders – An Plea For Help For Families With Seriously Mentally Ill Loved Ones by Jeanne Gore

“I See An epidemic, an apartheid of the SMI – It Outrages Me!”

I have been struggling to save my son’s life for 16 years now.

My son suffers from (yes, “suffers” – the word NAMI no longer wants us to use in conversation) schizoaffective disorder and has been jailed twice, beaten by seven police officers in Burlington, Vt, missing, homeless, and hospitalized 43 times, all because he didn’t know he was sick and, most of his hospitalizations were not long enough to stabilize his condition. 

Everyday I read horrific, heart-wrenching stories from family members all across the country. This is why I became active in NSSC. Let me explain what we are doing and why we wish NAMI would follow our lead.

This week National Shattering Silence Coalition wrote a letter on behalf of Kristopher Rodriguez, who is in a jail in Florida where he has been for the last 10 years. He has been forced to eat his own feces. His mother, even though she has medical power of attorney and guardianship of her son, has not been able to access his records or visit him. She is told he is no longer receiving his life-sustaining medication.

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(7-11-18) This is the second in a series of blogs about a telephone call conducted by a strategic consulting group hired by the National Alliance on Mental Illness that was held with parents of individuals with serious mental illnesses. A majority of the participants on that call were members of an organization called the National Shattering Silence Coalition.  Most were long time NAMI activists which is why I agreed to post their blogs. You can disagree or agree by commenting on my Facebook page. )

What NAMI Needs To Do by Dede Ranahan

My son, Patrick, suffered from serious mental illness (SMI). In 2014, he died in a hospital psych ward where I thought he’d be safe.

So why am I still here as a steering committee member of National Shattering Silence Coalition, and as a former Mental Health Policy Director for NAMI California? Passion, I guess.

An inability to walk away from so much suffering. 

In 2016, I set up a website and blog in honor of Pat’s life and memory. I began posting two stories a week from SMI family members.

This blog has turned into a first-person testament and running record of the horrors and struggles SMI families go through.

It documents their efforts  to try to get help for their loved ones. It highlights the voices of those who are losing their children to prison, the street, and/or to death. If NAMI is sincere about wanting to hear us and help us, it may be worth its members time to visit this website at Sooner Than Tomorrow: A Safe Place To Talk About Mental Illness In Our Families. 

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(7-10-18) This is the first of four blogs by parents with loved ones suffering from a serious mental illness. (SMI) These blogs were written after a consulting group held a telephone conference call with these parents at the request of the National Alliance on Mental Illness which is in the midst of developing a multi-year strategic plan. You can agree or disagree by commenting on my Facebook page.)

A Report From Teresa Pasquini About Her Attempt To Build Bridges At NAMI 

In January of 2018, Pete kindly shared a letter with his readers that I wrote to him regarding my effort to build a bridge to NAMI for families like mine.  In that letter, I committed to reassessing the petition that I had started in January of 2017. It was directed to the Executive Director of NAMI, Mary Giliberti, and the NAMI Board of Directors.

Today, I would like to update Pete’s readers and the petition signers about my recent efforts to build bridges, not walls, with NAMI.  

In April 2018, I contacted NAMI CEO Giliberti and Jessica Cruz, Executive Director of NAMI California, where I live, to express my desire to create a space for open dialog with NAMI leadership and the families of those living with serious mental illnesses. I specifically asked both to consider establishing a Families of Adult SMI Advisory Council.

It was a reasonable request since NAMI has a process for establishing the current councils that advise each of their boards. 

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(7-9-18) A consulting company hired by the National Alliance on Mental Illness held a telephone conference call last month with a group of parents who are advocates for the 4% of Americans who have serious mental illnesses, such as schizophrenia, bipolar disorder, and persistent life debilitating depression.

A spokesperson for Community Wealth Partners  said its consultants had been hired to help NAMI’s Board of Directors create a multi-year strategic plan. This surprised some parents on the call because they thought they would be raising their concerns directly with NAMI CEO Mary Giliberti.

After the call,  several participants offered to write blogs for me about the issues that they’d raised.

This week, I will post four blogs. Each writer has been active at some point in NAMI.

As always, I welcome your opinion on my Facebook page – pro or con – about the forthcoming blogs. As a courtesy, the authors asked me to send their blogs to NAMI’s national leadership before I posted them, which I did late last week.

Let’s begin with some history that will help put into context why the phone call was held.

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