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

(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.

(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

(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

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


(7-6-18) In today’s New York  Daily News, Cheryl Roberts, the executive director of the Greenburger Center for Social and Criminal Justice, writes about the need for mental health “asylums.”

During my travels and recently in Washington, I’m hearing more and more discussions about the need for longer-term residential facilities for the sickest of the sick. Americans always react with horror whenever  anyone talks about rebuilding “state hospitals.” That is a real fear based on the atrocious abuses that happened when state hospitals were dumping grounds in our nation.

Two factors are rarely mentioned in such discussions. The first is the widely accepted Rule of Thirds, which states there is a percentage of individuals with schizophrenia who we simply don’t know how to help and have little chance of ever recovering. Can everyone be helped through Housing First and ACT team programs in our communities? Can everyone live independently in supportive housing – an important question given the U.S. Justice Department’s drive to close group homes in favor of everyone having the right under the American Disabilities Act to their own apartment.

The second factor: while dumping individuals in shoddy institutions is unforgivable and unacceptable, no one faults long term residential facilities that currently exist in our nation that are generally so expensive that only the very rich can afford them. These are often farms or hospital connected residential facilities that appear more like college campuses than the locked wards of the past. Are institutions – by their very nature – destructive to the human spirit or did state hospitals become despicable monuments to man’s inhumanity because they were never adequately funded and dreadfully understaffed by an uncaring public? If the latter is true, is it realistic to believe that any public funded residential facility could ever operate on the same par as their private and prohibitively expensive rivals? 

In her OP Ed, Roberts joins an mounting chorus of advocates demanding an end to inappropriate incarceration. The question that lingers is how best can we help those who often are so ill they become entangled in our criminal justice system? Now that is a loaded question! I’ll be interested in hearing your thoughts on my Facebook page.

The Greenburger Center was created by New York philanthropist Francis Greenburger, whom I met decades ago when my first book agent operated out of Greenburger’s literary agency. I’ve written before about how Greenburger’s son, Morgan, was arrested during a mental health crisis and jailed at Rikers Island, which is what led to his politically influential and loving father to found the Greenburger Center.

Out of jail cells & into havens: Rikers must give way to humane alternatives for the seriously mentally ill

By Cheryl Roberts,

OP Editorial published in the New York Daily News

“Bring back the asylum” is a buzzphrase popularized by President Donald Trump, who reaches back in time for a simplistic solution to mass shootings.

For more than 10 million Americans with serious mental illness, asylum — defined as “an inviolable place of refuge and protection” by Merriam-Webster — is a concept that urgently needs to be reclaimed and realized, without recreating the inhumane asylums of the past.

When government began closing asylums 50 years ago, few new institutions emerged to absorb this population. That’s how jails, prisons and homeless shelters became the default housing options for those struggling with mental illness. But some people with serious mental illness still need asylum.

Places that provide asylum can be psychiatric hospitals, psychiatric units in general hospitals, Department of Defense or Veterans Affairs medical centers, private psychiatric hospitals, or treatment centers that provide 24-hour care but are not licensed as hospitals. What they can’t be are prisons or jails.

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My Friend Dr. James J. O’Connell Featured In Reader’s Digest: Street Doctor To The Homeless.

(6-29-18) I’ve written before about Dr. James J. O’Connell who has spent more than thirty years caring for homeless persons through the Boston Healthcare for the Homeless Program. I am fortunate to serve with him on the Corporation for Supportive Housing Board of Directors. This week, Reader’s Digest posted a well deserved profile of Dr. O’Connell written by Jim Axelrod in its “inspiring stories” series.  Compassionate caregivers such as Dr. O’Connell give me hope and truly make our world a better place.

Reader’s Digest: This Doctor Turned Down A High-Paying Career To Help The Homeless

by Jim Axelrod

When his homeless patients can’t get to a physician, he goes to them!

It’s a Friday morning in Boston, which means Dr. Jim O’Connell is making his rounds. He might be more comfortable inside an exam room, but that’s not where his 
patients are. O’Connell is one of a handful of physicians making house calls to the homeless in the city.

More than 550,000 Americans 
are homeless, and many have 
health problems but no access to care. O’Connell and his team, made up of psychiatrists, internists, a nurse practitioner, a case manager, and a recovery coach, are doing something about it. They spend their days walking around where the homeless live—in parks, under bridges, and 
on the outskirts of town. They treat about 700 regular patients. During these rounds, O’Connell himself usually sees about 20 patients. He knows where most of them sleep and whom to ask if they are missing. “I feel like I’m a country doctor in the middle 
of the city, you know?” he said.

O’Connell went to Harvard 
Medical School and was on his way to a prestigious oncology fellowship when his chief suggested he take what was supposed to be a one-year position as the founding physician 
of a new health-care program for Boston’s homeless. That turned into a 33-year career at the Boston Health Care for the Homeless Program, one of the country’s largest of its kind.

“You realize, ‘You know what, I’m just a doctor. And what I can do is 
I can get to know you and ease your suffering, just as I would as an oncologist,’” O’Connell said. “You could not find a more grateful population.”

And his patients are grateful. “This man is unbelievable!” one remarked. “He’s like Jesus,” another added.

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