Sunday, June 11, 2017

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) 



2 comments:

  1. Thank you so much for this important letter GG Burns. NAMI needs to really listen and act. We (families of the "4 percent" of the most seriously ill) need representation and help now. My son was not given an AOT while homeless and psychotic and because he was not made to obtain and keep treatment, he ended up in prison. The prison experience included abuse, beatings, placed in isolated confinement for 3 months, and upon release a whole new set of psychotic symptoms we do not recognize. I am dismayed and frustrated that we do not have adequate advocacy and help through NAMI, which was where I first went looking for help with my son all those years ago. The time to listen to us is NOW.

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    1. Thanks for your response Tama. Please send your heartfelt comments to your local and state affiliate. I'm so sorry the system of care failed your son and your family - you are not alone. Your voice matters.

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