Pete Earley

(7-30-18) Sadly, I receive too many of these poignant emails from parents. 

Dear Pete Earley,

I’m the mother of a daughter with a mental illness.

Like many,  her diagnosis has changed over time. We have heard Schizoaffective disorder, Bipolar disorder, early on schizophrenia, and a wide variety of other possible diagnoses, different illnesses or conditions. After so many years of varied diagnoses, as parents, our focus became less on what the diagnosis was and more on how do we best help our daughter to live and function her best today.

She is now 30. We have worked with varied providers, treatment programs and living situations since her later high school years. Her story is similar to many with recognized difficulties occurring throughout her transition to adulthood. College attempts were difficult – after her previously being a bright and outgoing young person.

During her time in college, we found the National Alliance on Mental Illness for help and support. And, at most times, it has provided both. We have become involved  with our local affiliate, as board members, helping to facilitate our local support group (which includes both family and consumers because we are smaller and don’t currently have separate groups) and I have both taken and now help teach Family to Family.

I’m writing because I imagine there are many like us who struggle to find our voice lately in the void between NAMI’s structure, our own daughter’s current status, and a fear that our speaking out might make difficult our hoped for contact with our currently unheard from daughter. We fear speaking out in case she is getting help today or does one day, and would be angry that we spoke out.

I know from teaching our class and attending our support group that we are not alone in this feeling.

You see, she has not contacted us in awhile.

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(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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(7-22-18) I am an organ donor, but I didn’t know that in many states you have to fill out a special form to donate your brain tissue. Guest blog submitted by Dr. Jim Hayes, President NAMI SC and a NAMI National Board member. Thank you Dr. Hayes.

BRAIN TISSUE DONATION AND SERIOUS MENTAL ILLNESS

The time to address the elephant in the room of Serious Mental Illness is NOW.

Mental health advocates are in a current state of confusion, have vastly divergent opinions and contentious attitudes about why we have so little progress in serious mental illness. Our family lives with serious mental illness every day. Rapid cycling bipolar 2 disorder affects our beloved family members. We have progress and setbacks every time the season changes, when there is prolonged rainy weather, bad winter or any form of setback.

We in NAMI want answers also.

It is so frustrating that many are compliant with meds, therapy and get great family support…but still there are bad times and they don’t have recovery. We blame the system, the providers, the insurance companies or the government because we believe Dr. Joyce Burland that we know we didn’t cause it!!

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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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Fred and I often appeared together on national broadcasts

(7-18-18) Mental health advocate Frederick J. Frese III has died. 

He was a mentor, a tireless activist, and a good personal friend. He also had schizophrenia.

Fred and I appeared side-by-side on national television programs several times, but we were together the most, along with his loving wife, Penny, when giving speeches at mental health events. He was an incredibly engaging speaker. I remember having to follow him in California after he had spoken extemporaneously for two hours! No one in the audience had wanted him to stop. He received a standing ovation.

He talked openly and bravely about his illness early on when others were reluctant to even say the word schizophrenia, quietly demonstrating by his actions that individuals with arguably the most debilitating psychiatric disorder can live extraordinary lives.

Fred could be funny. A U.S. Marine when he became sick, he once convinced a prominent general to write him an impressive job reference letter. What no one knew was the general had penned it when the two of them were on the same mental ward being treated for delusions. He often joked that he was one of the few Americans who had proof that he was not insane. That was because he had been given a certificate saying exactly that after he was discharged from a hospital. Fred criss-crossed the country speaking. More than two thousand times.  Penny was always with him. Their’s is a true love story.

Fred died July 16 at his home in Hudson, Ohio. He was unique in many ways. Fred was an unflinching advocate for “consumers.” At the same time, he spoke openly about how essential medication was to his stability. He was leader in NAMI, later helped found the Treatment Advocacy Center and became an advocate for Assisted Outpatient Treatment,  which angered some of his peers. I remember him telling me how grateful he was that he was not left homeless and abandoned on the streets.

I will miss him terribly and will remember, most of all, his kindness. He had a huge heart. When my son, Kevin, was grappling with his illness, Fred came down into the audience after giving a speech and sat with Kevin. That fact that Fred was a renowned psychologist, had worked as a director of a state hospital for fifteen years, was happily married and was a father, gave Kevin hope.

All of us who care about persons with mental illnesses have lost a good friend.

READ TAC tribute to Fred here.  NAMI Tribute to Fred is here. 

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(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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