“Let’s Be Straightforward About This” – NAMI Activist Writes Passionately About Need For Families Struggling With SMIs To Be Heard

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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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Founding Member Of NAMI Fought For A Year To Get Her Son Hospitalized. She Died Still Waiting For Reforms.

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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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Mother of Son Who Died In Psych Ward Asks NAMI To Do More. What Parents Want For The Seriously Mentally Ill

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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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Advocate Called On NAMI To Create Separate Advisory Council To Focus On Individuals With Serious Mentally Illnesses. Answer: No.

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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.  

Susan Tripp Pollard/Bay Area News Group)

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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The 4% Parents Of Adults With Serious Mental Illnesses Engage In Dialogue With NAMI

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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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Long Term Residential Facilities For Persons With Severe Mental Illnesses: A Response

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(7-8-18) Virgil Stucker has spent much of his professional career helping found and direct therapeutic residential communities, most recently serving for fourteen years as head of CooperRiis, which is based in North Carolina. He recently formed his own company to help parents navigate the mental health care system.

Here is his response to my Friday blog about recent calls for the building of modern day residential asylums. Specifically, I mentioned that while Americans are distrustful of state mental hospitals, long term residential facilities are available in many parts of this country if you are wealthy enough to afford them.

A Response To Your Blog:

Growing Talk About Modern Day ‘Asylums’ Being Heard: Good Or Bad Idea?

Good morning Pete,

I would encourage you to carry this theme further. First, let’s go back to the early days of the Asylum.

In the early to mid-1800s as communities stopped “taking care of their own“ and as mobility increased the asylums began to provide mental health care from A-to-Z, addressing all levels of acuity.
The superintendents of the, I believe, 13 asylums created an association that would become the American Psychiatric Association. They had rules for asylum operation, such as their population was to be limited to 150 residents. They also paid attention to the mix of mental health science, yes, even medications back then, and milieu therapy, in order to benefit from relationship-centered care within these nurturing environments. They also conducted outcomes research often showing improved results after stays of approximately one year.
Some of the residents benefited from much, much longer terms days.
Increased mobility, lack of political integrity and loss of mission-committed leadership for the asylums resulted in their demise. Their population sizes skyrocketed into the thousands of residents and the disabilities and challenges of these added individuals went beyond mental illness and included people with myriad maladies that were not a good mix in the milieu. It was a sad ending that followed a very good beginning.

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