Pete Earley

Want To Reform Our Mental Health System? Start By Setting Specific Goals!

(2-3-17) From My Files Friday — If we ever want to stop the inappropriate incarceration of individuals with mental illnesses, we need to set concrete goals and work toward achieving them.

That was some of the message that Ron Manderschied, the executive director of the National Association of County Behavioral Health and Developmental Disability Directors, gave last weekend at a conference hosted by the Institute for Behavioral Healthcare Improvement in San Antonio, Texas. Manderschied mentioned that he and I had discussed reducing the number of prisoners in jails and prisons with serious mental illnesses (367,000) by 20% to 25% by 2020.

I first began discussing that idea with Dr. Manderschied after Steven Kussmann, a Washington D.C. management consultant, cited the importance of clear goals in this blog that he wrote and I first published last February.

Unfortunately, neither Dr. Manderschied nor I have had much success in rallying national mental health organizations together behind a 25% reduction by 2020 goal, although several have their own jail diversion campaigns.

I was honored to give the keynote at the San Antonio event, and enjoyed hearing from such experts as Leon Evans and Gilbert Gonzales, who have turned Bexar County, Texas (San Antonio) into the gold standard for jail diversion, and Judge Steven Leifman, who spoke about how he is creating a system that will use “predictive analytics” to help individuals in Miami stay on track in their recovery programs. Assisted Outpatient Treatment was lively debated by Marvin Swartz, the head of Social and Community Psychiatry at Duke University and long time consumer advocate, Harvey Rosenthal, executive director for the New York Association of Psychiatric Rehabilitation Services.

Changing The Mental Health Movement From Within

by Steven Kussmann

Less than 3% of our population self-identifies as gay or lesbian. Yet, the LGBT community created a movement that changed our nation’s definition of marriage and secured same sex marriage as a constitutional right! Change did not happen organically nor overnight. It was the result of a highly-effective social movement strategy and decades of well-targeted action.

The number of U.S. citizens with a serious emotional and mental health disorder is 10-times greater than the LGBT population. Why then do our social and political successes pale in comparison with those achieved by this community? What can we learn from them to achieve similar results? How can we apply those lessons to transform the mental health movement into a powerful engine for effective change?

The lessons are many, and their application requires a fundamental refocus of movement strategy and structure. To succeed as a force for real social and political change, the mental health community, both its leadership and grassroots network, must rethink and retool its strategy and tactics.

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A Reader Writes: We’re Taking Matters Into Our Own Hands

by Pete Earley

Hi Pete

I’ll be brief.

My daughter, who is functionally opioid dependant, recently befriended a 24 year-old homeless mentally ill man who was discharged from the New York state foster care system and given a monthly SSI income.

He was wandering from sleeping in public doorways and recently while in a homeless shelter packed with thirty others on cots in a room with no supervision, he was attacked by other homeless and ended up in an emergency room. No one was arrested and the shelter, run by a well-known, nationwide nonprofit continues to operate, often causing more harm than good in my opinion.

Individuals such as my daughter’s friend often are safer on the streets.

Enraged, my daughter and I have taken him in.

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Update On NAMI Complaint & How To Influence A Politician? Find One Walking Down The Same Path

by Pete Earley

(1-27-17) Two items today. The first was prompted by a recent letter to the editor that caught my eye. The second is a follow up to the Internet petition being circulated by activists who claim the National Alliance On Mental Illness, the country’s largest grass roots mental health organization, isn’t paying enough attention to the sickest of the sick.

First the letter:

Dear Editor: My son battles with opioid addiction. This situation has taken its toll on me and my family. My point of view on the issue has changed; as a father, citizen, and (state) legislator. I have seen first-hand how our criminal justice, mental health, and crisis intervention systems may not be meeting the challenge of this crisis.

Through my experience I have learned that families often don’t understand the disease of addiction. I’ve learned that it is often difficult and expensive to access to care or to find a doctor who can prescribe medicine…that may be helpful in treating addiction. I have also learned that first responders have seen a tremendous increase in Opioid related incidents and are frequently put in difficult situations.

My family’s story is not unique; it can happen to anyone and with my son’s permission I’m sharing our story in an effort to help others. Addiction is a family disease and I know it’s both difficult and personal for everyone. Action on this crisis is on my agenda in the (Virginia) General Assembly, including increasing access to overdose reversal drugs, being an ally in the fight to reform our mental health system, and finding new ways for those in an addiction crisis to get to the resources they need.

State Delegate John Bell

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He Was Saved From Homelessness But Will This Recovery Program Survive Anticipated Cuts?

by Pete Earley

(1-23-17) I don’t like to simply reprint articles from other sources, but this story by Washington Post writer by Colby Itkowitz is well worth your time especially when the new administration has decided to dismantle the Affordable Care Act.)

His mental illness nearly took his life away. Then a unique program gave his life back.

By Colby Itkowitz

FREDERICK, Md. — It’s a little after noon. Usually by this hour, David Weiss would be waking for the second time, still groggy from his antipsychotics. He’d have gotten up once at dawn, maybe made himself an egg with toast. He might have gone into the back bedroom to scan his ham radio or played a few chords on his guitar. Then he’d go back to sleep.

But on this day, he had somewhere to be. It’s easier to get up on days like this, days with a purpose.

And so at noon, he is sitting in an abnormal- psychology class at Shepherd University in Shepherdstown, W.Va., his arms crossed and a plate of pizza balanced on his lap. At 64, Weiss still has a full head of wavy silver hair and a broad, kind face and a bulbous nose that make him a dead ringer for a mall Santa. He wears a Hawaiian shirt that smells faintly of incense.

He’s giving a talk to the students about life with mental illness.

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NAMI CEO ANSWERS CRITICS; DEFENDS ACTIONS & OUTLINES TOP PRIORITIES AND ACHIEVEMENTS

by Pete Earley

NAMI CEO Mary Giliberti at White House forum about mental illness

(1-20-17) NAMI’s CEO Mary Giliberti and the board have responded to a letter and petition drive launched on the Internet by some well-known NAMI members and activists who are angry because they believe NAMI is not paying sufficient attention to the seriously mentally ill. Full disclosure: I am a NAMI member.)

NAMI’s Response to criticism

January 18, 2017

Dear Ms. Pasquini, Ms. Burns, Ms. Nanos, Ms. Pogliano, Ms. Hays, Mr. Jaffe, Ms. Hoff, Mr. Hernandez, and and co-signers:

Thank you very much for your letter and for the accompanying stories of individuals and families who were unable to get help needed in a timely way. I take calls on a weekly basis on the NAMI Helpline when I am in Arlington, and I’m sad to say that I have personally spoken with many individuals and families who are enduring similar frustrations and heartbreak. I am very appreciative of your participation in NAMI and its mission of bringing help and hope to those who are facing the results of a failed mental health system.

We share your gratitude about the enactment of HR 2646, the Helping Families in Mental Health Crisis Act. During the three years it took to achieve final passage, NAMI worked hard and generated hundreds of thousands of petitions, emails, tweets, calls, and letters to members of Congress to make sure the voices of the mental health community were heard.

We were told personally by Hill staffers that the overwhelming numbers of communications from the grassroots had a significant impact on keeping the bill alive and moving it through the lengthy process. Additionally, our staff spent many hours behind the scenes communicating with our state and local affiliates and members, many of whom were receiving misleading information from opponents of the bill.

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Angry Activists Say NAMI Is Ignoring The Sickest of Sick Who Often Refuse Treatment

by Pete Earley

Haunting video called The Voices of 10 Million posted at Change.org by group petitioning NAMI to “stop shunning our families and our loved ones.”

(1-19-17) Several long-time mental health activists have written an open letter to National Alliance on Mental Illness CEO Mary Gilberti and NAMI’s board of directors complaining about what they describe as the organization’s “lack of focus” on serious mental illnesses and “mission creep.” NAMI bills itself as the largest grassroots mental health organization in the nation with chapters in every state and several hundred thousand members.

Many of the letter writers are well-known NAMI members who are parents of adult children, some of whom are currently incarcerated or have died while in custody or during fatal encounters with law enforcement. Other signers represent loved ones who are stuck in a revolving door of streets and jail because they “lack the capacity to voluntarily engage in their treatment due to the fact they simply do not believe they are ill,” according to an email sent to me by one signer. (Full disclosure: I am a lifetime member of NAMI.”

Chief among their complaints is that NAMI national’s leadership has abandoned the seriously mentally ill — who they call the 4% — who refuse treatment and, therefore, are often ignored by mental health providers and mental health organizations in favor of individuals who are not as ill, comply with treatment or are already in recovery.

In an email, G.G. Burns, a well-known Kentucky advocate wrote: “While many of the local and state NAMI affiliates work very hard to support families in the trenches, they, often do not receive the support and training they need from the national organization to address individuals and their families who are seriously ill and lack the ability to advocate for themselves.”

NAMI issued a response last night which I will post Friday morning. Meanwhile, here is a link to the letter writers’ petition that further explains what they hope to accomplish.)

“Silence becomes cowardice when occasion demands speaking out the whole truth and acting

accordingly.”

― Mahatma Gandhi

Dear Ms. Gilberti and NAMI Board of Directors,

As local, state and national family leaders and advocates of mental illness system reforms, we write to urge that NAMI promotes needed steps to fully support and implement the mental health provisions included in the 21st Century Cures Act.

First, we thank NAMI for its support of HR 2646, The Helping Families in Mental Health Crisis Act. As families and advocates of the 4% of the most seriously mentally ill people, we came out of the shadows and told our shared tragedies on the Capitol Hill. As evidenced in our stories, videos, hearings, testimonies* and letters we urged Congress to listen to our cries for help and hope, and we are grateful that we were finally heard.

Will NAMI also hear our cries? NAMI’s motto is “you are not alone.” Yet, many of us feel that we are alone and that our loved ones have been abandoned to the streets, jails, prisons and morgues or left to linger, often untreated or inadequately treated, in the back bedrooms of our homes.

We are forever grateful for the founding mothers of NAMI who were tired of their sons and daughters being blamed for their serious mental illness. They started a movement to win improved access to treatment and supports. We joined them and fought with them for years. Many of us are still loyal members. But, we are also still waiting for public and private systems of care to provide our loved ones a right to treatment before tragedy.

Many of NAMI’s policies and signature programs are valuable, key pieces of a strong mental health system. However, we believe that there is a lack of focus on specific programs needed for our loved ones,many who lack capacity to keep themselves safe and are therefore unable to assimilate into voluntary-based community mental health systems. Sadly, NAMI has allowed mission creep to put our families at risk. We simply cannot accept the status quo or waiting another 50 years for what our families need now.

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Pete Earley

Want To Reform Our Mental Health System? Start By Setting Specific Goals!