Petition update

Families and Advocates of 4% Respond to NAMI

Teresa Pasquini
El Sobrante, CA, United States

Jan 25, 2017 — Dear Supporters,

We have received multiple letters from family members ready to get personal and real about serious mental illness. I am sharing this one from Jeanne Allen Gore from Maine. Jeanne was one of the family members who helped organized a May 2015 event in Washington DC where we started #ShatteringSilence in support of the Helping Families in Mental Health Crisis Act.

I am so grateful for the support and partnership of amazing moms and advocates like Jeanne! Please share, tweet and comment on Jeanne's letter.

Thank you,

"Dear Ms. Gilberti and NAMI Board of Directors,

Thank you for your response to our letter. We applaud your efforts to get HR 2646 passed, your work on CIT implementation, expansion of FEP programs, advocating for adequate federal funding for housing, your work to protect and expand services for the mentally ill in Medicaid, and advocating for repeal of the IMD exclusion. All of these are important pieces that help those suffering from mental illnesses, assuming one can get them into treatment in the first place.

Many of our children are not receiving treatment at all. They are languishing away in jails, hospitals, our homes and in the streets of America without medicine because treatment for them is being seen as somehow a violation of their rights. Instead, they have been abandoned, criminalized, victimized, forced into solitary confinement, allowed to become homeless and on and on.

You state in your letter that you “think carefully about how we approach our work based on feedback from those who are part of our NAMI community.” Do you not consider us to be part of your NAMI community? We were very specific about what we need from NAMI in our letter:

1. Fully Funded Assisted Outpatient Treatment
2. SAMHSA Reforms
3. PAIMI Reforms
4. HIPAA Reform
5. End Discrimination

You only mention AOT, repeal of the IMD Exclusion, and HIPAA in your response and, of those three; the only one where we felt truly heard was your position on the IMD Exclusion. No mention was made of your support for SAMHSA or PAIMI reforms, both of which are absolutely necessary to ensure that our loved ones illnesses are recognized as a medical disorder, not a behavioral problem, that treatment is evidence based, and that PAIMI will stop lobbying to prevent medically necessary inpatient and outpatient treatment and supports and focus on what they are supposed to be focusing on which is abuse and neglect.

The fact that you could make the statement, “…NAMI supports AOT as a last resort…” tells us that you are not understanding at all what AOT is all about. How can our love ones gain access to treatment without AOT? How can we have "help and hope" when there is no treatment? Even in jails and prisons our love ones are denied treatment or have the right to refuse!!

AOT is evidence- based treatment, proven to save money and lives by reducing homelessness, arrests, hospitalizations, criminalization and suffering of those with a mental illness. Unfortunately, for the 4% with serious mental illness we are representing, they do not have a safe place within NAMI because they don't know they are sick and therefore would not even be looking for help. It is their family members who come to you seeking help. We are asking your organization, among other things, to see AOT for what it means to OUR family members - a lifesaver.

For the 4% we are referring too, AOT should not be looked at only as an option of last resort but as a tool to be used early on before the person is allowed to become psychotic again and again, becoming revolving doors in and out of hospitals, jail, homelessness, etc.and getting more and more ill. Someone suffering from anosognosia as most of the 4% do, will never ask for help because they don't know they are sick. If, as you say, early intervention is something NAMI sees as important, AOT needs to be part of that focus as early intervention for the 4%. We are not asking you to make AOT the focus of your efforts for the other 96%. We are asking you to make AOT a focus of your efforts for the 4%.

These statistics say it all:

Prevalence and Treatment Rates*
• 8.1 million adults with schizophrenia or bipolar disorder mental illness (3.3% of the population)+
5.4 million – approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
2.7 million – approximate number with schizophrenia (1.1% of the population), 40% untreated+
• 3.9 million – approximate number untreated in any given year (1.6% of the population)+
Consequences of Non-treatment*
• 169,000 homeless people with serious mental illness**
• 383,000 inmates with mental illness in jails and prisons
• 50% – estimated percentage of individuals with schizophrenia or bipolar who attempt suicide during their lifetimes
• 10% – estimated percentage of homicides involving an offender with serious mental illness
(approximately 1,425 per year at 2014 homicide rates)
• 29% – estimated percentage of family homicides associated with serious mental illness
• 50% – estimated percentage of mass killings associated with serious mental illness
* Numbers and percentages of US adults
+National Institute of Mental Health, 2016
**2015 Annual Homeless Assessment Report

Add our families to the above statistic and it becomes a much larger number of people suffering largely because NAMI has abandoned them.

You stated in your letter that you “…talk to families every day and know that they agonize about whether or not to seek AOT orders because of the feared ramification on their relationship with their loved one. When they move forward, they often are not supported and find it difficult to navigate the legal system. They worry about what will happen when the court order expires.” While it is true that we do agonize over whether to seek AOT orders, the reason for this is not because we don’t think the orders will work if implemented, it’s because we are afraid that, if they are not implemented, we will be left to deal with a psychotic loved one who doesn’t know he/she is sick and will now blame us for trying the hardest to obtain help for him/her that he/she doesn’t believe he/she needs. We fear for their lives and our own.

Why is it that it’s so hard to get an AOT order for someone who clearly meets the criteria? Why is it that we are not supported? And, why is it that we have to fear what happens when the order expires?

It’s hard to get the order passed because there is still too much resistance from a society that doesn’t understand that AOT saves lives and, instead thinks it’s a violation of ones civil rights. It is not a violation of someone’s civil rights to provide life-saving treatment. It is a violation of someone’s civil rights to deny them treatment and allow him or her to die with their so-called rights on!

We are not supported because organizations like NAMI and Disability Rights do not stand behind us in advocating for AOT.

We are afraid of what to do when the AOT order expires because we know that we will need to reapply for it then and realize that it’s the luck of the draw as to which judge will make the decision – one who supports AOT or one who does not.

You speak of AOT as if it’s some new experiment where it “remains to be seen whether they will be successful in fostering long term engagement.” Do your research. Research shows Assisted Outpatient Treatment:
• Helps the mentally ill by reducing homelessness (74%); suicide attempts (55%); and substance abuse (48%)
• Keeps the public safer by reducing physical harm to others (47%) and property destruction (43%)
• Saves money by reducing hospitalization (77%); arrests (83%); and incarceration (87%).
The only community services critically needed for someone under an AOT program are case management, medication management, housing if they are living independently, health insurance, whether it be Medicaid or private insurance, food stamps and SSI/SSDI.

We can give you success stories if you are willing to hear them. One example is Jeanne Gore’s son who, with 41 hospitalizations, was only voluntarily hospitalized once because that one and only time the voices were telling him things that were frightening him. Every other time it was involuntary because he never believed he was sick. Each time he was released until we finally had AOT for him, he would promptly stop taking the medication and wound up homeless, in jail, threatening his family members, etc.... He is 35 years old and has been ill since he was 18 years old. He has had AOT for the past several years and, with the exception of one hospitalization when his dose was dropped too low, he has been stable in the community and happy. He recently moved into his own apartment. He still does not believe he is sick but complies with the treatment to keep all of us happy. AOT has saved his life.

Your recovery model does not work for our children. We recognize that our children’s brains are injured and that they may never regain the ability to work or “fully recover.” We aspire instead for ALL of our children to receive treatment before tragedy and live life as happily, independently, and successfully as is possible.

While we appreciate your efforts to see HIPAA laws reformed, we are not satisfied with your simple acceptance that we were unsuccessful in those efforts. We intend to continue to advocate for real HIPAA reform, not just education as to what the laws mean as they stand.

Finally, you state “NAMI strongly supports increased hospital capacity, especially for acute care…” We feel that you are dead wrong in prioritizing acute care over long-term care. It is the “acute care” model that causes our children to become revolving doors in and out of hospitals that do not keep them long enough for them to stabilize! We need both acute care and long-term care. Finding the right mix or single medication to relieve our children of the horrible psychosis they suffer from can take weeks, if not months.

We regret that you have made it crystal clear in your response that you do not truly represent the 4%. We had hoped that you would partner with us as we replace stigma with honor, silence with our voices, despair with hope, shame with respect, and ignorance with science so that 2017 may be the year when we finally get treatment before tragedy!

Thank you.

Respectfully submitted,

Jeanne Allen Gore, Mom, Advocate, former NAMI Member, Vice President, Families for Treatment of Serious Mental Illness"

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