Monday, January 23, 2017

Activists Say NAMI Is Ignoring The Sickest Who Refuse Treatment and NAMI's Response

On Jan 19, 2016 my friend and hero, Pete Earley circulated our letter to NAMI on his national blog. Thanks to Pete for sharing our questions that many are afraid to ask. GG

Haunting video called The Voices of 10 Million posted at 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.
Read more here:

On Jan 20, 2016 Pete Published NAM's response to our letter, read it here:

NAMI CEO Mary Giliberti at White House forum about mental illness
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.

Mailed to NAMI on January 23, 2016 from Families of the 4%:

Dear Ms. Gilberti and NAMI Board of Directors,

We thank you and NAMI National for your response to our letter of concern. We applaud the good work NAMI does on behalf of those with mental illness who are able to participate in the many programs and support groups that NAMI supports and provides.

Many of the programs are, and will be, important keys to a mental healthcare continuum. However, all but Assisted Outpatient Treatment [AOT] “as a last resort” are predictably voluntary-based. If you can not get a person to have insight into their disease, (which AOT can effect), they can not take advantage of all the other great programs NAMI has to offer. That said, we must not forget the reality that some people never gain insight. AOT is their only salvation. It is a compromise to institutionalization and it gives people their lives back.

There are many reasons a person will not seek help. Lack of services is high on the list, but NAMI rarely acknowledges or talks about ANOSOGNOSIA despite a terrific definition on the National Website. Anosognosia is the single largest reason why people with schizophrenia or bipolar disorder refuse medications or do not seek treatment.

Perhaps we were not clear enough in our letter. What we are asking of NAMI, is to include in your mission the voices of families like ours who have suffered thousands of tragedies because we are trying to care for seriously mentally ill loved ones who make it impossible for us to help them. Please explain how NAMI helps people who are medication non-compliant, treatment resistant or anosognostic?

NAMI prioritizes programs that reap a “bang for the buck”  [listen at 37:50]. We all want to invest in robust programs for our youth and adults who will voluntarily seek and agree to get help - and maybe we'll get the next generation right - but meanwhile we can't throw away those with untreated serious mental illness who will not volunteer to get help, and who were unfortunate to have been born in the last half century of abandonment by the mental health industry. They are there!

They live on the streets, in jails and prisons, nursing homes and – for the most fortunate – they live with family members like ours who have the time, resources and strength to care for loved ones whose brain diseases often take over otherwise beautiful souls and strike out at us in incredibly abusive ways. Their bodies are also all too often laid to rest in coffins as a result of self and societal neglect.

Families like ours know NAMI has abandoned this group because we hear from them everyday. These families and their advocates have given up calling the NAMI hotline numbers because volunteers answering the phones are no longer trained to support those who do not voluntarily accept treatment. Too many respond the same way that the local mental health crisis operators respond by saying, “CALL THE POLICE!”

It's a crisis and someone needs to take the wheel and turn this ship around instead of trying to shove our loved ones who need assisted treatment into voluntary programs that don't work for them.  It's way past time to GET REAL about serious mental illness. By not providing a full array of mandatory and volunteer-based programs and services, both inpatient and outpatient, the never-ending stream of seriously mentally ill people left to the streets, jails and prisons, nursing homes and coffins will continue - and as they go down, so do we.

NAMI has promoted itself as the agency for families to turn to when in mental health crisis. Yet we feel we are being discriminated against. We need more than sitting around in story circles. On reading your letter, it has become even more clear to us that NAMI is not interested in representing our families. The idea that we can't intervene in a person's life to give them the treatment, care and love they need when they spiral downward because of the outdated idea that we can under no circumstances take away a person's civil liberties and right to self determination is frankly, inhumane. When a person lacks capacity to make a good decision for themselves due to neurological brain disease there is NO good reason not to intervene. In fact, the Olmstead Law is specifically limited to those capable of safely surviving in the community, not all mentally ill. We do not treat Alzheimers patients that way. What's the difference?

To Summarize:

Will NAMI support broadening the standard for involuntary treatment? This, (and a frightening shortage of psychiatric beds), is the heart of the issue for the 4%. "Poses a likelihood of serious harm", or much worse, "dangerousness", are the legal standards that prevent families from getting help for their SMI loved ones when they are obviously ill, clearly unable to perform the basic functions necessary to have anything close to a successful life, totally dependent on their families or others to survive, yet unaware they are sick and unwilling to get help. Left untreated, these are the individuals most likely to drift into homelessness, seek illegal drugs to self medicate, land in jail for crimes that are often senseless, sometimes merely crimes of survival, or in some cases become violent. The finest mental health system in the world is worthless if you can't get your loved one in to begin with.

Thank you.

Respectfully submitted,

Janet Hays, President - Healing Minds NOLA
Teresa Pasquini, mom, sister, former local NAMI board member, Co-Founder, Mental Illness FACTS, Family and Consumer True Stories/Right 2 Treatment-CA
G.G. Burns, Mom, AOT/Mental Health Reform Advocate, NAMI Member (2002-2017), NAMI KY Life Time Achievement Recipient, Former NAMI KY Legislative Public Policy Chair
Jeanne Allen Gore, mom, advocate, Vice President Families for Treatment of SMI
Lynn Nanos, LICSW - Mobile Psychiatric Emergency Social Worker
Laura Pogliano, Parents for Care
Jennifer Hoff, Hoff Family Foundation
Anthony Hernandez, Executive Director, Transforming Treatable Tragedies (TTT)

Note: This letter will be posted to our petition site and a variety of social change and media platforms for a continuous collection of supporters and comments.

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