Mailed to NAMI on January 23, 2016 from Families of the 4%:
______________________
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” [listen at 37:50].
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?
To Summarize:
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.
Thank you.
Respectfully submitted,
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.
