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Open Letter
to the Authorities September 23, 2005
Mr. Alan Levine, Secretary, AHCA
Dr. Thomas Insel, Director, National Institute of Mental Health,
NIMH
Mr. Charles G. Curie, M.A., A.C.S.W. Adm., SAMHSA
Ms. A. Kathryn Power, M.Ed. Dir., Center for Mental Health Services
Mr. Michael O. Leavitt, Sect. U.S. Dept. of Health and Human Services
Mr. Michael Fitzpatrick, Executive Director, NAMI
U.S. Executive Branch, Senators and Congressmen.
Ref.: Mental Illness - INSIGHT - A Key Piece in Recovery's Puzzle
Sirs:
The group, "Families of People with Untreated Mental Illness," was
started three years ago by the members of a Spanish Family Support
Group that has been meeting weekly for fourteen years and also
represents many of the one-in-five families that at one time in
their lives care for a relative affected by chronic brain disorders.
We are all volunteers, maintain confidentiality and don't accept
contributions. We are not political and will disappear the moment
that the scientists inform the American public of the no-fault,
genetic and non-discriminatory nature of mental illness and why
some mentally ill persons don't believe that they are mentally
ill and refuse care.
To diminish the high economic and emotional
cost of untreated mental illnesses, we humbly request the Directors
of the above
organizations to please initiate a campaign to inform the nation
that people with mental illness who refuse treatment are not in "denial," but
suffer from lack of insight, a non-treatable, common symptom of
psychosis. Also, that the people with no insight need and deserve
to be rescued and supervised for periods of time until they realize
that taking medicine is advantageous to their well-being and are
able to continue treatment on their own. See New York's Kendra's
Law: http://www.psychlaws.org/BriefingPapers/BP18.pdf
We hope that our lack of political connections and scientific
credentials will not make this petition irrelevant to any of you
and that you will consider our points of view. When history and
future generations ask why it took so long for the United States
to bring justice to its people affected by behavioral and mental
problems, we want the record to show that in 2005, a few families
did ask for help.
Fifty years have passed since the discovery of medicines to treat
behavioral problems and the possibility of instant dissemination
of information. Yet today, the rampant epidemic of homelessness,
incarceration of people with substance abuse and mental illness,
prostitution and sexual abuse continues to worsen.
The myth that our relatives "deny" that they suffer
from mental illness and willingly refuse or stop care, allows them
to remain untreated by following decisions of an antiquated legal
system that does not distinguish between the civil rights of sane
persons and the rights of those who, due to biological illnesses,
are "not in touch with reality or themselves." The myth
also perpetuates stigma and discrimination against all people with
mental illness and reinforces the belief that if they don't “want
to” or are “ashamed to” accept the reality of
their illnesses - they deserve whatever happens to them.
The community accepts the victims' neglect because the illness
is not lethal as is AIDS - and assumes that nothing can be done
because it is too difficult to change the law; the myth also absolves
the professionals of their obligation to insist on the need to
provide care and translates into the total indifference of others
to the economic and emotional plight of the victims and their families.
The persons with untreated, severe mental illnesses are the lepers
of modern times.
We would appreciate if someone could inform
us - and the community - of where in the literature available
to the general public there
is information explaining that lack-of-insight is a common symptom
of psychosis and the main reason why half of persons with mental
illnesses refuse or stop care. The National Institute of Mental
Health, NIMH, in letters dated April 2003 and August 2005 explains
to us that: "The problem of lack of insight is certainly a
profound challenge. One that is unfortunately at the heart of the
disability." It also tells us that the NIMH does research
and educates the community but it is the mission of SAMHSA to disseminate
information and to implement research into service.
The following is copied from the website of the Treatment Advocacy
Center, TAC - www.psychlaws.org and it is also available in Spanish
on our web site www.lackofinsightmi.org
"According to Xavier Amador, Ph.D., who spoke at the July
2001 Convention of the National Alliance for the Mentally Ill in
Washington, D.C., Anosognosia, "unawareness of illness," is
a syndrome commonly seen in people with serious mental illness
and some neurological disorders. A growing body of evidence points
to the fact that for many people with serious mental illness, lack
of insight is a medically based condition and about half of the
people with schizophrenia and bipolar disorder may not be getting
the treatment they need because of a brain deficit that renders
them unable to perceive their illness. People will come up with
illogical and even bizarre explanations for symptoms and life circumstances
stemming from their illness." People with this syndrome do
not believe they are ill despite evidence to the contrary, said
Amador, who is director of psychology at the New York Psychiatric
Institute and professor of psychology.
[Psychiatric News - September 7, 2001 Volume 36 Number 17, p.13,
Professional News, Reprinted with permission by Psychiatric News
and the author, @2001 America Psychiatric Association. All rights
reserved.]
The cover of "Schizophrenia Digest" Magazine (Fall,
2004): "INSIGHT - The Key Piece in Recovery's Puzzle" -
also reflects exactly our experience that without INSIGHT there
is no willing acceptance of medical care and without medical care
there is neither recovery nor the possibility of a better quality
of life for our relatives, the community and ourselves.
Please let us know that you are listening
to those "without
a voice" and will consider the request of the families and
some providers to initiate an educational campaign to vindicate
those affected by untreated, severe mental illness and their families,
by explaining the phenomenon of "lack of insight."
Regards,
Encl: “What Everyone Should Know about
Mental Illness”
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It
is almost impossible to accept treatment for an illness you
don't
believe you have. This is our dilemma and the reason why the
families of persons with lack of insight must ADVOCATE
FOR THOSE WHO DO NOT COMPREHEND THAT THEY ARE MENTALLY ILL
AND, CONSEQUENTLY,
WILL NOT SEEK HELP NOR SPEAK ON THEIR OWN BEHALF.
THEY
WILL "NOT" ADVOCATE FOR THEMSELVES, NOR WILL THEY EASILY
BECOME COMPLIANT CONSUMERS NOR PATIENTS, OR CLIENTS.
Families
Reaching Families offers simple information and emotional support
to the relatives and friends of the fifty percent of persons with
schizophrenia, bipolar disorders, severe depressions, borderline
personality, and/or co-occurring disorders who, because of
lack of insight or anosognosia, have difficulties comprehending
that they are mentally ill and consequently refuse or stop medical
treatment.
Some mentally ill persons are able to overcome the feeling of "I
Am Not Sick". The odds favor those whose family and care takers
understand the complexities of these no fault mental illnesses.
The successes are sometimes fragile and are most common when families
and professionals are able to offer, with patience and persistence,
opportunities for medical care, psychological counseling and supervision.
This
web site is dedicated to the seriously mentally ill persons whom
refuse medical treatment thus remain untreated, and to their families
and friends that care for and protect them. Also to those who because
their illnesses remain untreated and are isolated and afraid at
home, or become homeless, are in jails or prisons, dual diagnosed,
in constant crisis, or pay the ultimate price and commit suicide.
ADVOCACY
To
advocate effectively it is necessary to understand how the person
with mental illness feels and thinks.
The book I Am Not Sick - I Don’t Need Help
by Xavier Amador, Ph.D.,
describes the best way for the families to learn how to Listen,
Empathize, Agree and Partnership: LEAP.
To get the book in English
or Spanish please call telephone 1-800-431-1579, or order it
in the Internet at www.vidapress.com - or mail check or money order for $18.90
(includes book and S&H) to:
Vida Press
1150 South Rd.,
Peconic, NY 11958.
The book is also in Japanese and Chinese and can be ordered through
the publishers.
Instead of intellectually
arguing with our dear ones and insisting that they are wrong, we
need to find out as much as possible what is happening in their
life, especially how they feel. With fewer arguments, the probabilities
of a Partnership increase, or at least, the families understand
better the confusion of those who periodically live in another reality.
In Toronto, Ontario, Canada,
the World Fellowship for Schizophrenia and Allied Disorders - www.world-schizophrenia.org
- publishes informative material. Article: "About Schizophrenia"
and pamphlet #10, "Families in Limbo" are of special interest
to families of non-compliant mentally ill persons.
And, we copy from an article
published in TIME magazine, January 20, 2003, “Your Mind -
Your Body,” by Michael D. Lemonick:
“The disembodied voices of schizophrenia and the feelings
of worthlessness and self-hatred that accompany depression, although
they seem to be based in reality, are no more than distortions in
brain electrochemistry. Researchers are learning how these distortions
arise, how to lessen their severity and, in some cases, how to correct
them.”
As advocates we want to accomplish
changes – We suggest to the families that they tell their
elected officials and legislators, about the reality of our lives.
Please, open-up and tell those who are able to implement changes
what it means to share a life with a dear one who is mentally ill
and refuses treatment. The families/care givers are under constant
apprehension that one day their loved ones may disappear, end in
jail, become homeless or commit suicide. Knowing also that available
medications work well for those who take them, adds greatly to the
frustration of family members whose loved ones refuse care.
When these illnesses strike,
it takes time to accept their impact and longer to believe that
no one is at fault. As with cancer or diabetes, these illnesses
are just "Bad Luck,” as a brilliant consumer told me.
When the relatives read the
book "I Am Not Sick, I Don’t Need Help, and practice
Chapter 5, they have the scientific background to drop the culpability
and accept that they are not guilty. After accepting the complexity
of these biological illnesses, it becomes easier to communicate
with the mentally ill person, other relatives, friends, teachers,
judges, religious leaders, etc. Some may spontaneously share their
experiences with authorities and strangers and ask for help to improve
the system. And also, they will find out how many acquaintances
are eager to tell them about their own relatives with mental problems.
When nothing else helps, some
of us practice: "Serenity to Accept the Things We Cannot Change."
From NAMI's pamphlet: "Open Your Mind":
"Yours may be the
one out of every five families in the United States that is or will
be directly affected by a serious brain disorder. Such families
face an unfair system that still treats them as "less than,"
"not as important as," or "not equal to" the
rest of Americans. All Americans must help end the stigma and discrimination
that linger despite the scientific proof that makes them groundless."
FAMILIES COMMENTS ABOUT MENTAL
ILLNESSES
"The complexity of
the issue of mental illness is profound - it is manifested in so
many ways, it is so elusive, it is truly the most profund/poignant/confouding/representavtive
of the human condition."
Thomas Mullen, MSDW, Director of
Passageway, Miami, Florida
These illnesses, like most biological illnesses, are treatable and
do not discriminate. They are chronic, recurrent, with a genetic
predisposition and are aggravated by life changes, anxiety and tension."
For short periods of time,
when in front of a doctor, a judge or the police, persons with mental
illness may behave totally normally. Most patients blame the family
for their problems and explain the feelings of fear, sadness, grandiosity,
and bizarre thoughts, on outside circumstances.
A sense of urgency must move
us because without treatment our dear ones deteriorate. The earlier
the intervention, the better are the long time results. It is very
difficult to recoup the years lost to untreated mental illness.
Our best friends are the community
psychiatrists, those who keep their patients well and in the community
even when, for them, there is little economic incentive to do so.
ADVOCATING FOR CHANGE
BY WRITING LETTERS, VISITING YOUR LEGISLATOR, ETC
(The following material was
provided on July of 2003, by the TREATMENT ADVOCACY CENTER (TAC).
It is included here because it contains such important information
and recommendations, some of which you may have already seen elsewhere
at this site. but, rather that edit everthing repeatedly, we choose
to leave it in its entirety.
Not
every friend or family member may have reached the point of feeling
"ready" to advocate for persons with mental illnesses
.
It is obviously our greatest hope to encourage everyone to do so.
Perhaps, in reviewing this material, you will better understand
and agree with the urgency of doing so! )
While still in the
early, letter-writing stage, my boss offered to do anything to help
me. I said, “Well, do you know anyone who is really powerful?”
He looked at me awhile and then said, “You are the most powerful
person I know.”
- Sheree Spear,
family member and advocate, who led the successful effort to change
North Dakota law
People often ask us where they
can start in trying to change their state's law. These materials
may help - remember to also explore the rest of our site for more
information.
And most importantly, believe
that you can make a difference, that your passion is power.
Understand your state
law
There are a number of things
that are critical to getting help for people who are too sick to
understand they are ill.
- Does your state allow for assisted outpatient
treatment, also known as court-ordered outpatient treatment? All
but nine states do - Connecticut, Florida, Maine, Maryland, Massachusetts,
Nevada, New Jersey, New Mexico, and Tennessee. As inpatient beds
continue to dwindle and hospitals continue to close, the lack
of an outpatient treatment option means people who are in crisis
end up in the streets or in jails instead of in treatment. Look
up your law in our chart to see where your state fits in, or get
the details of your statute.
- Does your state require someone to be
dangerous before they can be court-ordered to treatment? About
half of states require someone to be dangerous, which limits help
for people until they are in crisis. Look up your law in our chart
to see where your state fits in, or get the details of your statute.
- Does your state use the law it has? If
your state law has useful components to it, find out whether or
not it is ever put into action.
- Is there activity already happening in
your state? Check out our state activities section to see.
Understand the facts
- Assisted outpatient treatment
works. Recent statistics show that of those placed in
six months of assisted outpatient treatment, 77 percent fewer
were hospitalized, 85 percent fewer experienced homelessness,
83 percent fewer were arrested, and 85 percent fewer were incarcerated.
- The consequences of lack of treatment
are severe. They include homelessness, victimization,
suicide, violence, and arrests and incarceration. Find out more
in our series of fact sheets - or search our database of preventable
tragedies to see the impact in your state.
- Anosognosia is a medical condition.
The majority of those not receiving treatment have no awareness
of their illness (anosognosia). Stigma and dissatisfaction with
services are relatively unimportant reasons why people do not
seek treatment. The greatest reason for non-treatment by far is
lack of awareness of illness. Such individuals will not voluntarily
utilize psychiatric services, no matter how attractive those services
are, because they do not believe they are sick.
- Severe mental illnesses are real diseases.
Multiple studies confirm that schizophrenia and bipolar disorder
(manic depressive illness) are diseases of the brain, in exactly
the same sense that Parkinson's disease, Alzheimer's disease,
and multiple sclerosis are brain diseases.
Write a letter to the
editor
The letter to the editor is
one of the most commanding tools of advocacy. With one, your passion
can reach tens of thousands or even hundreds of thousands readers.
Find out more about the goals of a letter and how to write and submit
a letter to your local paper. Find out more at http://www.psychlaws.org
about the goals of a letter and how
to write and submit a letter to your local paper.
Find out who your legislator
is
One easy way to do this is through
http://www.congress.org/ or http://www.vote-smart.org/.
These websites allow you to enter your ZIP code and get the names
of your legislators. If you don’t have internet access, call
your library to get the name of your legislator.
Write to your legislator
Even a handful of letters can
have a tremendous impact on your state legislator and their decision
on whether to focus on or support treatment law reform. Letters
do not have to be long-winded or full of statistics – in fact,
short letters with personal stories are the most likely to be read.
Visit your legislator
Meeting with your legislator
is the most effective way to explain the importance of treatment
law reform. These visits allow you to personally "read"
your representative’s reaction to your request of support.
Help implement and publicize
good laws
After you get a law passed,
or if you discover that your state already has a good law that just
needs to be used, you can help ensure effective implementation.
Some of the things you can do to let stakeholders know about the
law include:
- create a guide for family
members to understand and use the new law to get treatment - some
examples at http://psychlaws.org
are a guide to California's
AB 1424, a guide
to New York's Kendra's Law, and a guide
to California's Laura's Law;
- make presentations to various
stakeholder groups; An example
at http://psychlaws.org.
- look for media opportunities
to highlight the reform. Did a news article in the paper get the
law wrong? Send a letter and educate readers. In one good example,
this Maryland advocate saw a general article about the issue of
medicating someone to be competent to stand trial - she jumped
on that as an opportunity to tell readers about the new law in
her state.
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