Open Letter to NAMI’s Board president: Address the needs of the sickest and NAMI’s tent will have room for ALL!

Dear Steve Pitman,

Last week I wrote a heart felt letter to all the local and state NAMI leaders in the two states I’ve been a member of since 2002.

In my letter I said: I am writing to respectfully encourage your local and state board to support the NAMI, (national) board candidates who will represent the needs of our families and loved ones who are living with serious brain diseases (SMI). Please vote for: Lauren Rettagliata, Robert Laitman, Mary Zdanowicz, Dj Jaffe and Frankie Berger, who are running for the 5 vacant board slots. For more info, click on the names of the NAMI board candidates to read their bios and why they are running for office here: https://www.nami.org/Extranet/NAMI-Board-of-Directors/Voting-Elections/2017-NAMI-Elections/Meet-the-2017-Candidates

Steve, I understand you are a faithful advocate and I thank you for your years of service. I take the time to write to you as a dedicated state/federal public policy advocate and NAMI volunteer for over 15-years. 

During this time, I have volunteered for NAMI boards, committees, facilitated support groups, taught Family-to-Family classes, helped raised thousands through NAMIWALKS and have provided many hours of free media artwork for both local and state affiliates. In 2010-12, I stepped far beyond my own comfort zone and volunteered as the Legislative Advocacy Associate, as well as co-chairing NAMI Kentucky’s first Public Policy Committee. In the following years, the work of this committee, lead NAMI Kentucky into developing their first legislative priorities and eventually the hiring of a public policy director.

I am also the founder of a movement called: Change Mental Health Laws in Kentucky, that as of March 2017, after over 7 years of effort, resulted in the passage of Tim’s Law. 

It is a well known fact in Kentucky, that family members and peers (individuals with diagnoses of SMI), all came together as a team to support legislation that would help the most seriously ill trapped in a costly and often deadly revolving door. This partnership was in part due to NAMI Kentucky's leadership, taking a stand for those forgotten individuals who lack the capacity to advocate for themselves. It was not an easy battle, but one that in time ended positively. In fact, NAMI (national) could learn a thing or two on how to not divide their membership by looking at how Kentucky NAMI affiliates moved beyond their differences to embrace change.  

(Below is a photo of Kentucky NAMI affiliates advocating together for Tim's Law earlier this year. Their efforts combined with the help of the Kentucky Mental Heath Coalition, did what others said was impossible. They even made history by protesting to override the Kentucky Governor's veto.)

One of the reasons I have given my time and energy to NAMI, is because my brilliant 29-year old son has been trapped in the revolving door for almost 12 years. 

Even though my son benefits from treatment, he's been too ill to voluntarily agree to what he needs – to step unto the recovery bridge. Diagnosed young, my son received the best possible early interventions, but after he aged into the adult system, his rights to refuse treatment overruled.

This system of rights to “self-determination” failed my son.   

NAMI boasts of how important early intervention is for psychosis, but doesn’t address what happens when the 40-50% of individuals suffering with Bipolar or Schizophrenia, who lack insight to their symptoms, often refuse treatment. This condition known as anosogosia is a biological toxin to the brain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4197783/

When psychosis goes untreated it leads to permanent neurological damage. Too many like my son, end up trapped in the revolving door from 72-hour hospital holds, to the streets or to jail. It is a terrible waste of a human's life and of taxpayer’s dollars.

Anti-stigma campaigns that NAMI spends thousands on have not made a difference in my son, but treatment would. Treatment restores his ability to work and achieve his goals. Treatment allows him to enjoy his family and to hopefully one day have the capacity to recover. Without treatment, he doesn’t have that chance.

During these wasted years where was NAMI?

NAMI’s executive director, Mary Giliberti regularly states that NAMI only supports AOT as the last resort.

Imagine my son had cancer and the American Cancer Society claimed that they only supported treatment after a person’s illness reaches stage 4? 

Steve, you misrepresented families like mine when you stated: If one looks at the history of NAMI, this movement to a big tent approach has been slow and steady. Do you mean NAMI’s budget has grown as NAMI has moved to include all illnesses associated with the brain? Are you referring to the growth of NAMI’s membership? Or, are you referring to the (lack of) progress that NAMI has made for the seriously mentally ill? Where is the fight for a cure? Where is the demand for more humane housing, for more hospital beds? Where is the public outcry to stop patient dumping on the streets or in jails? I've been told that some NAMI members are told to only share personal stories that end in hope and recovery. Where is our hope if you exclude those who are too ill to fit into the recovery tent?

In the past few years, while NAMI has moved forward with peer driven recovery model (big tent), there are fewer housing programs than ever, fewer hospital beds, mental health centers are closing around the US – some are routinely dumping patients in other states.

350,000 with severe mental illnesses are dying in the streets with no treatment – and worse, over 130 million of our sons/daughters are trapped in jails.

Like many other family members across the US, I've voiced my concerns regarding the direction NAMI has been taking. I have written to or met with NAMI's executive director Mary Giliberti, NAMI's director or public policy Ron Honberg and others, but I've felt like my words fall on deaf ears. Like many other members, I've turned elsewhere for support. 

The most concerning part of your letter is the fact you inappropriately guided state and local leaders against the five candidates that are running to include the most seriously ill and their families like mine. Is this fair? Steve, it seems to me that you set the stage for NAMI affiliates to break it’s own polices, with your big tent/little tent letter.

In the past week, I have received numerous communications from members across the country. They're appalled of the negative ripple effect that your letter created, but many will not voice their concerns due to fear of retaliation against those who hold the purse strings.

We need our nation’s voice on mental illness to stand up for those with serious illnesses as physical illnesses of the brain, not behavioral conditions of the mind! We need these illnesses reclassified as brain diseases, so medical providers are able to treat them, not punish them in jail. 

  

We need NAMI to stop spending so much effort on anti-treatment campaigns.

We need NAMI to stop purposely creating division among its members.

In closing, people like my son aren’t worrying about stigma. They're worried about having a place to live or food to eat!

Every day we fight for our loved ones until there isn't an ounce of energy left, but the system providers ignore our cries, as the barriers engulf our hopes. 

NAMI needs to listen to all their members.

Respectfully, G.G. Burns

(2002 – 2015), NAMI Lexington, (Lexington, Kentucky)
(2016 – 2017), NAMI Shelby (Birmingham, AL) 

To view a copy of Steve's letter to NAMI leaders, click here: http://www.peteearley.com/2017/06/01/nami-board-presidents-email-sparks-controversy-called-unconscionable-by-focus-on-serious-mental-illness-candidate/

Another Response RE: NAMI's BIG Tent vs Small Tent by Jeffery L. Hayden, Ph.D.

This is another well written response regarding NAMI's "big tent" vs "small tent" controversy that began when NAMI's President, Steve Pitman, issued a letter to state and local NAMI organizations describing his view of the past, current and the future state of NAMI. 

I am sharing Jeffery's response to Pete Earley, with his permission as other national Mental Illness Reform advocates have. 

Dear Pete,

This is in response to your recent post, “One Tent, Not Two: NAMI’s Future Role In Our Lives.” 

(One Tent, Not Two: NAMI’s Future Role In Our Lives)

While in principle I agree with your statement, “There should be ‘one tent’ with enough seats inside it for different points of view,” I do not believe this will be possible until NAMI dedicates itself to following science and advocating for the treatments and supports that science provides evidence for.

As long as NAMI continues to seek the “middle ground,” hoping to frustrate as few people as possible, there will always be an “us” vs. “them”, and never a “we.” This is a political position that, though may help increase membership, does not serve those with mental illnesses or their families well. What other illness-advocacy group provides information based on a consensus of its members rather than the best available scientific evidence?

A perfect example of this is Assisted Outpatient Treatment. 

"The preponderance of scientific evidence clearly supports AOT as an effective, evidence-based strategy that results in reduced homelessness, incarceration, and contact with emergency services for those who need this level of intervention."

Despite this, does NAMI National provide full-throated endorsement of AOT? No. Why? Because a significant number of members, many of whom would not qualify for AOT, claim it violates their civil rights.

There are also service providers who follow the “Recovery Model” that object to AOT. Their reasons are likely numerous and varied. However, my strong suspicion is that among the top reason is the fear that AOT services would siphon money away from the established “recovery” programs.

For those with serious mental illnesses and their families, the Recovery Model is a pipe dream. Their illnesses are so severe that they cannot “volunteer” for services, which is a prerequisite for the vast majority of Recovery programs. If people are not able to volunteer for treatment, what does NAMI National have to offer?

Mental illnesses include a vast array of conditions that impact the health, welfare, and quality of life for those who suffer. Fortunately, science provides information (i.e., evidence) that can inform the development of treatments that will mitigate the symptoms that negatively impact the lives of those who are diagnosed. If NAMI National committed to following the science, it could truly be a resource for all who are challenged with a mental illness condition. If it fails to make this commitment, it will continue to be a divided organization that will have decreasing relevance for those for whom is was originally established to support.

Having “one tent with enough seats” for everyone to sit does nothing if you never get a seat at the table.

Thank you for all you do,

Jeffery L. Hayden, Ph.D.

Teresa Pasquin shares the speech of Mary Zdanowitcz, another NAMI candidate who is part of the "Focus on Serious Mental Illness" ticket, which I also endorse. Read more here and see links to videos here:

https://www.change.org/u/26862745

DJ Jaffe's Open Letter to NAMI Affiliates and State Organizations About Serious Mental Illness

Mr. Steve Pittman
President National Alliance on Mental Illness
3803 N Fairfax Dr., Suite 100
Arlington, VA 22203

June 3, 2017

Dear Steve:

Hope all is well. Someone was kind enough to share with me, the letter you sent to all affiliates, concerning the upcoming NAMI Board elections. In your letter, you essentially argued that the National Alliance on Mental Illness should not focus its efforts on helping the seriously mentally ill because that would kick others out and create a smaller tent. That is not what we are arguing. We are arguing that by broadening NAMIs mission beyond the seriously mentally to encompass mental-everything, it is the seriously mentally ill who have been kicked out.

Candidates for the NAMI board, like me, were told not to campaign, and yet we find the NAMI President campaigning to influence the election, with NAMI resources, and couching issues in a way we would not. Your materials were distributed to NAMI voter mailing lists that we don’t have access to. Surely there is something wrong with that. Surely the election should be fair.

While sixteen candidates are running for five open board seats on various platforms, your letter specifically targeted the four (advocate Lauren Rettagliata, mental illness attorney Mary Zdanowicz, Dr. Rob Laitman, and I) because we are running on a “Focus on Serious Mental Illness” ticket that encourages NAMI to make the seriously mentally ill a more important priority. I am hoping you will share this response as soon as possible with the same affiliates and state organizations you sent your original letter to. As someone who like you, loves NAMI, I thank you for considering this. It is appreciated.

The moms and dads who sat around the dinner tables in Wisconsin, California, Maryland, Washington and elsewhere founded the National Alliance on Mental Illness because they had loved ones with schizophrenia, bipolar disorder and other serious and often devastating mental illnesses. But they were alone. Mental Health America existed, but its “big tent” approach ignored the needs of the most seriously ill. No organization was providing parents of the seriously mentally ill with support or advocating for treatments, research and services for the seriously ill, hence a NAMI was needed. Dr. Torrey came out with books on serious mental illness and did media interviews that turbo-charged the initial efforts of the NAMI founders. NAMI grew and became the leading organization representing the seriously mentally ill, while MHA continues to represent all others. I was proud to serve two terms on the NAMI National Board in the 1990s when we unapologetically prioritized the seriously ill.

Unfortunately (at least to many) NAMI National has strayed and it is the seriously ill who are paying the price. Many of us believe mission-creep is causing NAMI to ignore, marginalize and shun the seriously ill. We would like to help NAMI National do a better job on focusing on the most seriously mentally ill which is exactly what the moms, dads, siblings, children, local affiliates and some states still focus on.

Over the last fifteen years, to appease and make room for all the others in your big tent approach, NAMI National essentially kicked the seriously ill out.

Following are a few examples of how:
• NAMI replaced the phrase “mental illness” with the more palatable normalizing phrases “mental health conditions” or “behavioral health” favored by the higher functioning. The seriously mentally ill simply disappeared from the NAMI narrative.

• NAMI created formal media guidance urging the media not to use the word ‘suffering’ when talking about mental illness. Again, the seriously ill who do suffer were erased from the NAMI narrative.

• NAMI signed on to full page ad in the Washington Post against importing meds from Canada thereby making meds more expensive for the seriously mentally ill who often rely on medicine rather than talk therapies.

• NAMI robustly embraced replacing the scientific medical model with the recovery model parts of which lack a scientific basis and put every consumer in charge of their own recovery no matter how psychotic. For some of the seriously mentally ill, that does not work out well.

• NAMI National went from an organization that acknowledged and worked to reduce incidents of violence--for example by creating reports on rates of violence against family members by mentally ill relatives--to one that now refuses to recognize increased rates of violence in the untreated seriously ill. NAMI now hides behind the PC platitude that the mentally ill are no more violent than others. But that statement is not true for the untreated seriously ill, so NAMI simply ignores them. We believe it is violence by the untreated seriously ill minority that stigmatizes the non-violent majority, so it is particularly important for NAMI to play a role in reducing it. NAMI won’t even admit to the problem.

• NAMI has invited anti-psychiatry, Bazelon, Protection and Advocacy Programs, and the most radical consumer groups into the tent, in spite of their belief that psychosis is a civil right to be protected rather than an illness to be treated.

• NAMI decided that one of the important issues it should dedicate resources to was to proactively lobby to make it easier for the most seriously mentally ill to buy guns.

• After a direct vote by the entire NAMI membership calling on the NAMI board to expand access to Assisted Outpatient Treatment (AOT) to reduce homelessness, arrest, incarceration and hospitalization of the seriously mentally ill, NAMI sided with the ‘big tent’ advocates and simply refused to incorporate AOT in its advocacy. As a result, more individuals with serious mental illness are homeless and incarcerated.

• NAMI routinely diverts advocates who used to fight for more housing and programs, and against the prejudicial laws policies and politics that deny our seriously mentally ill loved ones care-- to fighting an amorphous concept of stigma. Stigma has become the black hole of advocacy diverting tens of thousands of advocates away from working for real legislative reform.

• NAMI’s big-tent approach causes NAMI to turn a blind eye as SAMHSA and other groups in the tent divert funds that should help the seriously mentally ill to programs to eliminate bad grades, poverty, hunger, bad parenting, angst about sexual identity, prostitution, sex trafficking, crime, unemployment, divorce, and truancy, by wrapping them in a mental health narrative.

• There are many other examples in my book, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill” of how the mental health industry, including NAMI National have largely abandoned the seriously ill. Your letter correctly claimed that “The 2017 candidates ... will influence the direction of NAMI for the next three years.” But I don’t think having four or five of the fifteen being concerned about the most seriously mentally ill influences it in a bad way. I think it is a good thing. Your majority can still outvote us if it wants, but at least the voices of the seriously ill will be heard.

It is not as if NAMI doesn’t have a priority already. The 2015-2019 NAMI strategic plan is to “Focus on Youth.” We believe it should be, “Focus on the Seriously Mentally Ill” whatever age they are. When kids age out, we want NAMI to be there for them. You are not really against ‘focusing’, which we advocate for, you just don’t want the focus to be on the seriously ill. Let the members decide. I respectfully disagree when you say members have embraced the recent years of mission-creep. I believe most members, affiliates, and many state organizations still focus on the seriously ill and would like NAMI National to do so too. I know you, as I, love NAMI. With that in mind, I hope you will refrain from trying to prevent a fair vote, and to mitigate the damage your campaigning did by sharing this letter with the same email list as quickly as possible.

Thank you very much for all you do. I look forward to hearing from you.

Sincerely,
DJ Jaffe
2017 Candidate for the NAMI Board on the “Focus on Serious Mental Illness” Ticket Two-term former NAMI National Board Member (1992-1998)
Co-founder and former board member of Treatment Advocacy Center Executive Director, Mental Illness Policy Org. Author, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill”

URGENT! CALL TO ACTION-Vote for the NAMI Board to Focus on Serious Mental Illness

Teresa Pasquini

El Sobrante, CA

JUN 3, 2017 — Dear Supporters,

First, it is critical that all signers of this petition, “educate, empower and engage” your local affiliate leaders in the upcoming NAMI Board of Directors election issues. There are critical decisions at stake and we all have to make our voices heard for the voiceless.

As I stated in my previous update, I strongly support the “Focus on Serious Mental Illness” ticket for the upcoming NAMI Board of Directors election. The ticket is made up of Lauren Rettagliata, Dj Jaffe, Mary Zdanowicz and Robert Laitman, M.D. Additionally, I also strongly support Frankie Berger who is NOT on the ticket but is a very strong advocate for people and families living with serious mental illnesses.

The voting process is currently underway and it does not allow individual members to cast votes. Therefore, it is imperative that each of you contact your local NAMI affiliate or State NAMI Org in writing and tell them to support the candidates who will focus on the needs of our families and loved ones who are living with serious mental illnesses.

Second, I want to express my strongest disappointment with the recent controversy started by the President of NAMI, Steve Pitman. This week, Mr. Pitman sent an email to local and state affiliates with a not so subtle message that I believe inappropriately steers members against the five candidates I listed above. This email and another written by the Executive Director of NAMI Maine has created a lot of controversy and anger among many NAMI members who feel that these NAMI leaders abused their power in an attempt to influence this upcoming NAMI Board election. See Pete Early's blog discussing this controversy:
NAMI Board President’s Email Sparks Controversy. Called ‘Unconscionable’ By “Focus on Serious Mental Illness” Candidate

I assume Mr. Pitman is a very good man and I respect his service to NAMI. However, the 5 people that I support for the Board of Directors are also good people who are dedicated advocates. They deserved a fair chance to present their positions without collusion and clear ballot engineering. Why are NAMI leaders allowed to campaign against these good people who are NAMI members in good standing?

Mr. Pitman’s email suggests a “big tent” vs. “small tent” competition between those who have declared a desire to focus NAMI on SMI. This again feels like “othering” to some of us who support the SMI focus and believe that our families have been left out of the “big tent” and forced into the “small tent” just like some of our loved ones have been forced into solitary jail cells. We do not feel embraced by the NAMI President's message. One advocate said, “No the issue is not big tent versus small tent-unless one wants the current circus show to continue. The issue is how can NAMI best improve the lives of those with serious mental illness. The MI in NAMI needs to mean something.”

It is clear from the comments on this petition that we all want NAMI to mean something more to our families. I know that Lauren Rettagliata, Dj Jaffe, Mary Zdanowicz, Robert Laitman, M.D. and Frankie Berger are committed to a tent that holds all perspectives with radical respect.

Sadly, I believe the 2017-2018 NAMI Board election has been compromised. It is the obligation of any non-profit’s Board and Executive Director to ensure trust in the organization and its board election process. Elections must carry the highest level of integrity and credibility that ensures those who are running feel it was fair. If there is a perception of tampering then the outcome may leave a smell of illegitimacy for those who lose or those who are elected. We have seen that scenario played out in our recent Presidential election. That has been bad for our democracy and it is also bad for NAMI. We must voice our objections to the current NAMI Board of Directors to the perceived bias against certain candidates. If unity is the desired goal, then NAMI must make equal room for all perspectives.

Finally, I became a NAMI member again last week before this controversy began and I won’t let this controversy push me out of the tent, big or small. I have a right to be in NAMI and voice my perspectives and it felt good to rejoin and re-engage. I felt warmly welcomed by my local NAMI Contra Costa chapter who also welcomed Dj Jaffe to speak at our NAMI Contra Costa FaithNet community training. I didn’t hear anyone complain about his presentation and heard many comments praising his book, Insane Consequences. There were many peers and family members present who were thrilled to have their books signed and photos were taken with the author. It was a great day of community building and shared learning. Isn’t that the way it is supposed to be at the state and national NAMI organizations, too?

I often refer to myself as a recovering angry mom. I have worked hard to take my anger wall down and work towards a system of care for all. So, I refuse to be silenced, shunned or pushed into a small tent. I have worked in local, state and national partnerships with many peers, families, providers and organizations to help improve the health, mental health, and mental illness systems. I have fought hard to protect the rights of families like mine and peers to be equal partners in co-creating system change.

Many family members with SMI adult children feel silenced, marginalized and unheard by NAMI’s shift to a “big tent” philosophy. It is my hope that NAMI will find a way to make room for us all to be together again in one tent and feel welcomed and embraced. I have seen it happen. It is possible.

Join here for updates and to view comments: https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness/u/20440298