(9-13-18) In the past decade, D. J. Jaffe has emerged as an influential player. He is frequently quoted in newspapers, including yesterday’s New York Times and this week’s New York Magazine. Despite his criticism of mental health providers – – as outlined in his book, INSANE CONSEQUENCES:  How the Mental Health Industry Fails the Mentally Ill –  Jaffe was invited to give a Ted Talk at the National Council for Behavioral Health’s national convention in 2017.

Once active in the National Alliance on Mental Illness and the Treatment Advocacy Center, Jaffe created his own website and organization called Mental Illness Policy. Org., which he now uses as his base.

Jaffe has garnered his share of detractors as well as fans. His ideas are frequently opposed by peer advocates and consumer groups. You might remember that Jaffe was the most vocal of a so-called Focus On Serious Mental Illness platform – four candidates – who ran unsuccessfully for the  NAMI board. He is characterized by some NAMI leaders as a “perpetual bomb thrower” whose primary focus is on Assistant Outpatient Treatment. I recently learned that he had helped scuttle a planned SAMHSA expert panel because he objected to the individuals who SAMHSA had invited to present.

So who is this pony-tailed controversial advocate?  I decided to ask him a series of questions via email.

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William Allen White was called “The Sage of Emporia” because he spoke for the common man in middle America.

(9-3-18) Nearly all of my blogs are about our broken mental health care system, but this one is not. It is about free speech and journalism.

In 1973, I began my first full-time job as a reporter at The Emporia Gazette, a Kansas newspaper made famous in the late 1800s and early 1900s by its editor, William Allen White.  His son, William Lindsay White, hired me while he was in a hospital dying of cancer. At the time, the newspaper gave all potential employees a writing test.  W. L. White declared, “This boy doesn’t need to take any tests. You can tell from his (college) editorials that he knows how to write.”

I worked at The Gazette for less than two years, but it was the best of the four newspapers where I worked during my reporting career, partly because of its managing editor, Raymond Call, a wonderful mentor.

So why am I writing about William Allen White and The Emporia Gazette on Labor Day?

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(8-6-18) Tennessee is scheduled to execute Billy Ray Irick in three days even though he has a long, well documented history of mental illness – a fact jurors were never told during his 1986 trial. Incorrectly, they were specifically advised that he was not mentally ill.

In addition, Irick has the mental cognitive acuity of someone who is seven to nine years old.  He is fifty-nine.

The National Alliance on Mental Illness, NAMI Tennessee and a state coalition – created specifically to oppose the killing of Tennessee inmates with severe mental illnesses – are urging the public to contact Tennessee Governor Bill Haslam at bill.haslam@tn.gov or by calling his office at (615) 741-2001.  They are asking Haslam to commute Irick’s death sentence to life in prison without any possibly of parole. Irick has spent the last 30 years on death row. The governor’s commutation is considered his last chance.

In their letter to the governor,  NAMI CEO Mary Giliberti and NAMI Tennessee Executive Director Jeff Fladen stated:

“Powerful delusions or hallucinations characteristic of psychosis may lead a person to act in ways they never would have otherwise…”

They argue two critical points:

(7-25-18) Mental Health Advocate Doris A. Fuller returned to Washington D.C. recently to testify before the Federal Commission on School Safety at the Departmental of Education about the Health Insurance Portability and Accountability Act of 1996  (HIPAA) and how it often is used to “stonewall” families trying to help a loved one with a serious mental illness. There are three hot button issues, in my opinion, that often are divisive in mental health circles – HIPAA, Assisted Outpatient Treatment, and the Medicaid Institutions for Mental Diseases exclusion.

I am reprinting her testimony to encourage discussion about HIPAA on my Facebook page.

When I first met Doris, she said I was responsible for her moving to Washington D.C. She explained that after she read my book, she felt compelled to find an advocacy job here. Later, I met her daughter – who was the real reason why Doris felt so passionately about our broken system – when Natalie was in a Fairfax County Va. psychiatric ward.

Tragically, Natalie ended her own life. Doris bravely wrote about Natalie’s death for The Washington Post and also for my blog. (Her story remains one of the most read and powerful accounts that I’ve posted. I’ve included a few paragraphs from it and links at the bottom of this post. Please take time to read it.)

Written Testimony by Doris A. Fuller before the Federal Commission on School Safety 

It is a privilege to be here today as a mental health advocate and family member who has observed HIPAA’s role in mental health care delivery in a number of settings, including on a college campus.

A few years ago, I was asked to talk about mental illness and violence to the leading organization for student affairs officers on college and university campuses. Mental illness nearly always emerges by the age of 24 – in late adolescence or young adulthood – so these school officials are working daily on the front lines of mental health. In fact, because of the age that serious psychiatric disease typically starts, it is likely that no single other institutional setting in America serves so many individuals with mental health conditions as our high schools and colleges.

During my talk, I extolled the phenomenal communication, support and encouragement my daughter Natalie and I received from state university officials and health care providers when she had her first psychotic break as a college senior. Her symptoms led to a number of extreme behaviors, including painting her naked body blue from head to foot and pressing body prints all over the walls of the school’s art building. She was not a typical or easy student to serve. Yet, in significant part because of the university and its health center’s active collaboration with me in getting Natalie safely through these episodes, she ultimately returned to campus and graduated.

At the end of my talk to the group I asked if anyone from her university was in the room. Two hands rose timidly in the back.

“Thank you,” I said. “My daughter would not have succeeded without you.”

After I finished, they came up front to talk to me. By this time, I was working at the Treatment Advocacy Center and regularly hearing from families in crisis because of mental illness in their young adult children. I had learned that few students and families experience the open, collaborative approach Natalie and I did.

Why was that? I asked the officers. How could you talk to me and work with me, as a family member, when other schools around the country won’t even return parents’ calls?

They told me it was a matter of institutional policy and practice. The university was guided by the conviction that it had the authority under HIPAA, FERPA and applicable state laws to act in the best interests of its students, even if their actions required disclosing personal health information or other confidential matters to families. It was their belief that acting in the best interest of their students was their business.

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(7-20-18) The unfortunate death of mental health champion Dr. Fred Frese III this week interrupted the series of guest blogs that I have been posting about the National Alliance on Mental Illness . Four of those blogs were written by participants in a telephone conference call  organized by a consulting group  hired by NAMI to help its board design a multi-year strategic plan. All of the bloggers asked NAMI to create a Families of Adult SMI Advisory Council.  I posted NAMI’s response Monday – a heartfelt reply  written by its newly elected NAMI President Adrienne Kennedy. This final guest post in the NAMI series has been written by Gabe Howard, a speaker, podcaster, and advocate, who has a mental illness and has written for me previously. I consider him a fair-balanced activist who, like many of us, tries to understand and appreciate different points of view.)  

A Peer’s Perspective: Who Does NAMI Represent? 

I first became aware of The National Alliance on Mental Illness (NAMI) when my desperate family discovered them in Tennessee and took the Family-to-Family class. Because of NAMI, my family was able to learn about mental illness and bipolar disorder, and receive much-needed support while I was in and out of hospitals and psychiatric offices 12 hours away in Ohio.

When I was more stable, I looked into NAMI in Ohio, where I lived, and realized they had no programming geared toward people living with mental illness. There were no support groups or classes aimed at “consumers” (what peers were called 10 years ago). This did not deter me, so I called the state NAMI affiliate, scheduled a meeting, and asked if there was any way at all I could be involved.

NAMI Ohio introduced me to NAMI Franklin County and the Executive Director asked me if I’d like to volunteer for the NAMIWalks program. All I had to do, they said, was be a cheerleader for the rights of people with mental illness – and maybe raise a little money. That year, ours was the number one walk team, raising thousands of dollars – and that made people notice me as an advocate for the first time.

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