Meeting Friends, Brain Training, Being Inspired: NAMI’s Convention 2015

 

Sometimes in life you feel as if you are part of something bigger than yourself. You feel connected to strangers because of a joint experience. You feel a bond, as if you are part of a family.

This is how I felt Thursday night during the closing ceremony of NAMI’s national convention in San Francisco. It was a warm sensation, a rewarding one and an invigorating one. More than two thousand of us had come together.

It was liberating knowing that the persons sitting near you understood what you had gone through because they also had gone through similar experiences.When Kevin had his first breakdown more than 13 years ago, a friend introduced me to Mark Gale whose son also had been diagnosed with a mental illness.  Neither of us knew much about mental disorders. Now Mark is one of California’s most influential champions for reform.  Our son’s illnesses changed both of our lives and thankfully, both of our sons are in recovery. Mark represents the best in NAMI to me. A take charge individual determined to help others.

I was able to see other advocates, such as Dr. Fred Frese, a individual with schizophrenia who has spent decades demanding that persons with mental disorders are treated with dignity and respect. Long-time Virginia advocate Betsy Greer stopped me in a hallway and thrust a New Yorker article into my hands.

“Have you read this about police shootings in Albuquerque?” she demanded. “It’s outrageous!”

Major Sam Cochran,  the father of modern day Crisis Intervention Team Training, was equally enthused when he spotted me. He talked to me about the need to educate nurses and doctors in emergency rooms about how to better handle someone in the midst of a breakdown. “We’ve got to do something about this!”

I’ve spoken to so many NAMI chapters in the past nine years that I felt as if I were attending a reunion. I think I recognized about half of the convention attendees!

Here’s some highlights.

1. Under Executive Director Mary Giliberti and its board, NAMI has launched new programs to: fight stigma (see I am Stigma Free), call more attention to the inappropriate incarceration of persons with mental disorders ( Stepping Up) , recruit more youth by opening up NAMI clubs on college campuses (a 70 % increase in one year to more than a hundred clubs now operating) and focus more attention of the importance of getting people help when their illnesses first appear rather than waiting until a crisis happens. Andrew Sperling, NAMI’s lobbyist), was credited by Robert Heinssen, from the National Institute of Mental Health, with obtaining $24.8 million dollars in federal grants allocated for implementation of Coordinated Specialty Care, a promising early intervention treatment program.
2. NAMI Board Treasurer Gary Mihelish from Helena, Montana, reported that the bulk of NAMI’s $11.6 million dollar budget this year is being funded by donations by individuals (49% of all revenues.) Only 33% is coming from government grants and corporations, primarily pharmaceutical companies. This is a huge reversal from NAMI’s past history when much of its budget came from Big Pharma. It reflects NAMI’s ongoing efforts to wean itself from drug money.
3. NAMI bravely held a session with open microphones about Assisted Outpatient Treatment, one of the most divisive issues in mental health circles and inside NAMI. Mary Giliberti and Ron Honberg, NAMI’s director of Policy and Legal Affairs, deserve kudos for holding the event. The three hour program focused on San Francisco’s newly passed version of Laura’s Law. (California’s AOT law.) As described by Angelica Almeida, the official responsible for implementing AOT in the city, the focus is not on forcing a person into treatment but rather engaging them so they will seek help voluntarily. That might seem like semantics to some, but after listening to Almeida and reading the law, I would describe what San Francisco is implementing as an effort to soften coercion by offering a narrowly defined group of severely ill persons wrap-around, intensive services on a voluntary basis before asking a court to require them to accept services. The law does NOT require a person to take medication. Peers and family members must be included in every step. Of course there was disagreement in the audience about the value of AOT but the conversation was respectful and not vitriolic.
4. Dr. Sophia Vinogradov, one of the nation’s leading authorities on the brain’s ability to retrain itself, gave a mesmerizing presentation about brain training. She described how treatment for schizophrenia has not changed in decades. Symptoms of the illness are controlled by medication and behavior is modified through psychotherapy. But neither of those treatments actually are a “cure.” Dr. Vinogradov showed how cognitive training exercises can help rebuilt the nerve cell networks that are dysfunctional in persons with schizophrenia – similar to how a weight lifter can build muscle size through exercise. Brain training is not a new concept. But her techniques are aimed specifically at persons with schizophrenia. She recommended that audience members interested in cognitive learning visit PSYBERGUIDE.
5. One of the most innovative campaigns that I discovered at the convention is called CEOs Against Stigma, an effort by NAMI Massachusetts to educate CEOs of major companies. Eliminating stigma in the workplace can improve productivity, lower costs and improve the lives of employees who become sick.

The convention ended with country-western singer Jason DeShaw speaking about how his life on the road changed after he was diagnosed with bipolar disorder. His talent was a vivid reminder of how individuals with mental disorders can overcome their illness and inspire others. He ended the convention offering all of us HOPE.

As a Washington Post reporter, I refused to join any organization except my local church. I thought it was important for me to be impartial. But after I finished my book, CRAZY: A Father’s Search Through Americans Mental Health Madness, I became a life time member of NAMI  because I wanted to help my son and advocate for reforms and improvements in our mental health system. My one day trip to the NAMI convention reminded me of why I support NAMI and believe in its programs.