Families and Advocates of the 4% with Serious Mental Illnesses Respond to NAMI
Jan 24, 2017 — Dear friends,
I posted a personal update called "Shattering Silence While Rocking the Boat" which included links to Pete Earley's recent blog, http://www.peteearley.com/blog/ , containing NAMI's response to our open letter and petition.
Below is our first formal reply to that response. We have received additional letters of rebuttals to NAMI's response that we will post over the next week.
We invite your comments of support or disagreement. We are learning together while we try to right the ship together.
Thank you for your support!
January 23, 2017
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." 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?
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.
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 change.org petition site and a variety of social change and media platforms for a continuous collection of supporters and comments.
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