Search Results for: that way madness lies

(4-10-17) You are riding in a car on a major highway with a gentle rain splashing on the windshield while you speak into a car microphone to a case worker at Oregon State Hospital, where the movie One Flew Over the Cuckoo’s Nest, was filmed.

You say, “My brother is there and I am wanting to get in touch with his case worker.”

Your call is transferred and a case worker who doesn’t identify himself comes on the line.

You say, “My brother is in the hospital there and I was wondering if I can find out some information about him.”

He says, “Sorry, due to confidentiality laws I can’t tell you whether he is there or not.”

“I definitely know he is there because the police just told me that they took him to the hospital. I can at least provide information -“

The case worker cuts you off. “Yeah, I couldn’t do that without telling you whether he is here or not. But you could do that in a letter form. Of course, you can write a letter to anyone. You can write it to the doctor who is in charge of whoever the person is who might be here.”

Thus begins Sandra Luckow’s powerful documentary “That Way Madness Lies...”

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(3-6-20) I’m a big fan of Clubhouses, especially Fountain House in New York City, which is the granddaddy of them all. So I am thrilled to be speaking in Miami this weekend at a fundraiser for The Key Clubhouse of South Florida.

It was founded in 2008 by a grassroots group of family members and a young person with lived experience who wanted to provide a warm and safe place for individuals with mental illnesses where they could get help reintegrating into the community. This is what I like best about Clubhouses – nearly all are created by local advocates who are determined to help others and they are run by persons with lived experience!

It took two years to raise enough money to open the doors to its first Clubhouse in downtown Miami for 10 members. Word quickly spread and by 2013, the Clubhouse had moved into a larger building that included a culinary unit and dining room. The goal of Sunday’s event is to raise funds for an even larger facility to serve more members.

The folks at Key Clubhouse have done a fabulous job in designing useful programs. They offer an accredited “recovery through work” program that helps those who are able improve their lives through meaningful employment. They offer pre-employment skills building, a wellness program, social activities, assistance accessing medical services and housing and daily, personal counseling.

If your community doesn’t have a Clubhouse, it should!

Christine Dimattei, a reporter for WLRN radio in Miami, the local NPR affiliate, did a four minute interview with me, during which I quickly described how Miami has transformed itself from the hellhole that I describe in my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, into a model system that is being emulated across the country.

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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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7-13-18) “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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