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

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


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.

As Congressman Tim Murphy stated per the final version of the 21st Century Cures Act: “We needed everything we got but we didn’t get everything we need”. Therefore, the families and advocates of the 4% are reaching out to partner with all local, state and national mental health organizations to ensure that we get everything our families need. We want to be assured that NAMI will not only hear us but also take action by prioritizing our needs.

Specifically, we strongly support and need the following:

· Fully fund Assisted Outpatient Treatment [AOT]: AOT saves money and lives by reducing homelessness, arrests, hospitalizations, criminalization and suffering of those with a serious mental illness.

· SAMHSA Reforms: Implement evidence based programs and strong policies under the newAssistant Secretary that will recognize mental illness as a medical disorder, not a behavioral problem.

· PAIMI Reform: Focus on abuse and neglect instead of lobbying to prevent medically necessary inpatient and outpatient treatment and supports.

· HIPAA Reform: Clarify and improve HIPAA to include family rights and to prevent harm by shutting out parents who are providing care.

· End Discrimination: Support the full repeal of the IMD Exclusion and call for parity and a right to treatment under Medicaid/Medicare.

We are encouraged to see vital aspects of our priorities identified in NAMI’s newly revised Public Policy positions of December 9, 2016 – (click here) however, we are concerned with how this paper process will in fact transfer to system progress. For example, NAMI’s policy platform for court ordered treatment (pages 63-65) looks good on paper, however, we do not hear a full-throated endorsement for investing in these programs being delivered to NAMI state and local chapters.

We were extremely disheartened that a recent communication to your members celebrating NAMI’s successful support of the 21st Century Cures Act actually failed to even mention AOT. We firmly believe that there must be no wiggle room in directives to local and state affiliates on the effectiveness of AOT.

Also, your recently released 2017 Priorities fail to include any of our priorities and many others that the 4% and their families need. Messages matter and your communications signaled to us that evidence based programs – that we believe to be life saving programs for our loved ones – are not being prioritized by NAMI National.

The tragic consequences of the failure to protect NAMI’s original mission to be the voice of FAMILIES of those with serious mental illnesses are found in multiple investigative reports of leading national papers. An example, is the recent series by the Boston Globe’s Spotlight Team, “The Desperate and the Dead:”

 This brilliant series not only shines poorly on Massachusetts, but also on our nation’s inability to protect families and our loved ones from danger and death. It also signals a failure of NAMI’s obligation to your founding members.

Please give serious consideration to our thoughtful concerns. If NAMI is still the “family voice” then we expect your commitment to advocate, listen and lead in partnership with our families and advocates of the 4%. We are ready to get real, get radical and get results with all key partners of mental health reform and criminal justice reform. We see the passing of the 21st Century Cures Act as a first step that lays the foundation for many more needed reforms.

We will continue to communicate our priorities as we launch a new campaign for change that is committed to #ShatteringSilence in 2017. We are ready to build authentic partnerships with all local, state and national “mental health” leaders to ensure that our loved ones and families like ours are never forgotten.

Thank you. We look forward to your response.

Respectfully submitted,

Teresa Pasquini , mom, sister, former local NAMI board member, Co-Founder, Mental Illness FACTSFamily

and Consumer True Stories/Right 2 Treatment in California.

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

Lynn Nanos , LICSW – Mobile Psychiatric Emergency Social Worker

Laura Pogliano , Parents for Care

Janet Hays , President – Healing Minds NOLA

DJ Jaffe,  Executive Director, Mental Illness Policy Organization

Jennifer Hoff , Hoff Family Foundation

Anthony Hernandez , Executive Director, Transforming Treatable Tragedies (TTT)


Angie Geyser, mental illness advocate

Deborah Geesling , President P82 Project Restoration, Co-Chair Arizona East Valley Behavioral Health


Kathy Day , advocate

Alison Monroe, mom

Ilene Flannery Wells, Paul’s Legacy Project

Patricia Fontana, Voices of Mothers co-founder

Robert (Joe) Bruce, Advocate

Jeanne Allen Gore, SMI mom and advocate, former NAMI member

Joann Strunk, mom and former NAMI member

Mary Ann Renz, Family Member, 20 + years of NAMI, Son Decreased as of 11/11/08. Former NAMI

State President 1995 -4/12/1996. NAMI State Executive Director 4/13/1996 – 2/2000

Robert Powitzky, PhD, Justice and Serious Mental Illness

Faye Morton , NAMI Lexington and NAMI Kentucky

Gwen Bartley, Executive Director Amazing Grace Advocacy and mom to Michael

Barbara Alexander Co-founder, Marin Organization to Reduce Homelessness Coalition

Law Office of Mary T. Zdanowicz, Specializing Mental Illness Law & Policy, Member NAMI Cape Cod

& the Islands and NAMI Massachusetts, Founding Executive Director of the Treatment Advocacy Center

Andrea Eberle MD, Ph.D, NAMI Board Member (1997-2000)

Dede Ranahan – A Safe Place to Talk About Mental Illness in Our Families,

Past MHSA Policy Director, NAMI California

Laurie Turley, concerned parent

Karen Cohen, Walnut Creek, CA. Co-Chair, Open Our Hearts Outreach Project on Mental Illness

NAMI Contra Costa (California)

Mary Barkdale, f ormer board member of NAMI, Decatur AL, former contributor to NAMI Alabama and

former contributor to NAMI National.

Anne Francisco, NAMI member and advocate, mother of Josh who was denied help and died.

Tania Schwenk, mom

Gloria Bertrand  ~~ Mother of a SMI son Bill Becker – deceased 2*8*2015

Douglas Dunn, 1st Vice President, NAMI-Contra Costa, NAMI Family-to-Family teacher, and parent of a

gravely ill loved one with absolute anosognosia

Susan Inman, primary caregiver for my adult daughter living with disabilities related to schizophrenia,

author, blogger, past member of NAMI Greater Seattle

Jeffery L. Hayden, Ph.D., BCBA-D, President, Hayden Consultation Services, Inc., Adjunct Faculty,

California State University, Channel Islands, Member, Advocacy Steering Committee, NAMI – Ventura

Deborah Fabos, Admin Circle of Comfort and Assistance: support and information for caregivers of the


Hans and Candy DeWitt, Voices of Mothers and Others

Cheri VanSant, former NAMI member and family to family instructor, advocate for the seriously mentally

ill in AZ, mother of an adult son with smi.

Sharon Boen, former NAMI member and concerned sister

Kathy Smith, NAMI member and mother of SMI who is imprisoned.

Ron Powers, writer

Christi A. Weeks, concerned parent

Theresa Bish, Survivor of Sibling with SMI Suicide, past Chair of San Diego County Mental Health

Advisory Board, County Media Advocate for Laura’s Law,

Pippa Abston, MD, PhD, pediatrician and mother of adult with schizophrenia, former NAMI Alabama

board member

Lauren Rettagliata, Right2Treatment CA member, ARC, NAMI

Evelyn Burton, NAMI member

Lisa Powell, concerned parent

Annis and Joaquin Pereyra, SMI advocate

Gloria Hill, Certified Florida Guardian Advocate, member of the Florida CIT Coalition. Former Contra

Costa Mental Health Adult Family Coordinator (California) 1999-2011

Mary Courtney-CA Homeless, Incarcerated SMI Outreach, SMI Advocate and sister to David who died

behind a dumpster, untreated and alone.

Kris Myerson , parent and MH advocate

Diana MaKieve, Co-Chair, Open Our Hearts Outreach Project on Mental Illness, Alamo, CA

Note: This letter will be posted to petition sites and other social media platforms for a continuous

collection of supporters, comments and additional priorities for the campaign of #shatteringsilence in

2017 for the SMI families of the 4%.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.