FAMILIES OF UNTREATED MENTALLY
ILL PERSONS
www.lackofinsightmi.org
August, 2004
Who We Are
First of all, we are a volunteer and confidential, self-supported
organization. We would like to invite you to see our website: www.lackofinsightmi.org,
and if you agree with the information, please forward it to others.
This information is for the relatives of persons diagnosed with
schizophrenia, bipolar disorder, co-occurring disorders, borderline
personality, adults and adolescents with legal problems and people
who are homeless, incarcerated or missing.
Concepts & Changing of Attitudes to
Allow for Dialog.
Any relative who reads this email should never feel alone again.
We belong to a fraternity of hundreds of thousands of default caregivers,
who alone and for life provide free-of-charge services to our dear
ones. Because of an erroneous sense of guilt and stigma, the families
remain isolated and ineffective. By disseminating the correct information
about the no-fault, biological and genetic nature of mental illnesses,
we may be able to start a dialog embracing all those affected by
the illnesses. Since mental illnesses DON'T discriminate, the sum
of the well-to-do families plus the average, the disfranchised
relatives, consumers and providers, we nationally represent a POTENTIALLY
powerful force. We must not forget that!
When the families open-up and become part of the dialog, we will
be able to join others who are asking Congress and the states for
adequate funds, enforceable accountability, and the necessary changes
to provide effective services to our relatives. Right now we can
only commit ourselves, one by one, to raise the importance of our
issues among the general public and the legislators. When properly
informed, the rest of the world will respond, as they did when
those afflicted with AIDS and their friends, demanded help.
In order to diminish stigma and guilt and
become motivated to act, it is necessary to be properly informed.
There is an abyss
separating the knowledge of the scientific world and what the general
population knows about mental illness. The description of the irrational
behavior of our relatives is frequently published and often "entertaining." The
biological causes of the illnesses and the steps necessary to accomplish
recovery - through continuity of medical care - are not. The no-fault
reason for the behaviors, and the fact that the families don't
create the illnesses are misunderstood. Official information from
the National Institute of Mental Health is plentiful when talking
about depression and "mental health", but it usually
doesn't cover the latest research proving the genetic, no fault,
nature of psychosis and other symptoms of "mental illnesses." We
learned about research by checking www.aaas.org, the website of
the American Association for the Advancement of Science - under "Can
We Talk".
The Families Understanding of Mental Illnesses and Co-occurring
Disorders
As with children who have diabetes or cancer,
young people who use alcohol or drugs may have a genetic predisposition
to be depressed,
rebellious, fearful, or shy that predisposes them to look for relief
in substances. Some, they tell me, just abuse substances because
they like pleasure. But, we all avoid pain and seek pleasure. We
know now that some average older persons, if genetically predisposed,
become risk-takers after using dopamine to help them control the
symptoms of Parkinson's. Research at Johns Hopkins University’s
Bloomberg School of Public Health found "people with the genetic
digestive disorder known as celiac disease to be three times as
likely as the general population to develop schizophrenia." What
happens in our body’s influences the way we think and feel,
and what we think and feel also influences our bodies.
Lately, in our support group for families, we have been reading
a few pages of the book by Xavier Amador, Ph.D., I Am Not Sick
- I Don't Need Help, to learn how to listen, empathize, agree and
become partners with our non-compliant dear ones (Chapter 5 - A
New Approach). We have found this book extremely helpful. The untreated
mentally ill person perpetuates the stigma we all must deal with.
Untreated, there is a dramatically increased likelihood for committing
crimes, becoming and remaining homeless and addicted and creating
the general feeling that all mentally ill persons are dangerous
and beyond help.
We already know that taking the medicines regularly is the best
way to control the symptoms. Finding the right medicine can be
most frustrating. To get the non-compliant patient to accept treatment
often seems almost impossible. Abrupt changes in medication tend
to produce relapses. The illnesses affect their way of feeling
- and many use the thinking process to explain their problems by
blaming others, usually the family.
During an emergency, they can behave totally normally in the presence
of authorities; perhaps the body is able to supply the brain for
a short time with the right amount of the neurotransmitters. The
illnesses are chronic, recurrent and with a similar prevalence
all over the world. The more demands and tension, the greater the
probability of relapses. A few mentally ill individuals need long
term institutional care, which is almost non available. Even when
incarcerated our non-compliant relatives can refuse medicines.
If anyone has the opportunity to attend a Recovery meeting www.Recovery-Inc.org
please go and learn about your own feelings, and how to change
your approach to things we cannot change. We can only control what
we think and do.
Legislative / Political Solutions
The families feel alone and frustrated because we are, and because
the illnesses are complex. As explained in the NIMH article "Making
Sense of the Brain's Boggling and Complexity," (April 16,
2004), to help find scientific solutions, it may require the
coordination of 15 federal organizations.
Yet, the solution is political. We must find out who controls the
money, even when money alone is not the answer. When those directly
affected - families and consumers - engage the rest of the community
in asking for better education and transparency in matters related
to severe mental illnesses, the process of properly caring for
our relatives will accelerate. By openly asking our leaders to
apply as soon as possible what the scientists already know, which
is that mental illnesses are treatable brain disorders, we will
bring a better quality of life to the community.
Political action is required to change the
flow of funds and to invest in working solutions, instead of
maintaining the status
quo. Our taxpayers' money goes to those with lobbyists defending
their interests. In general, the mentally ill persons are poor,
the ones who get well are dismissed, the families are overwhelmed,
and half of all mentally ill persons don’t even realize that
they are mentally ill. This dynamic has allowed the status quo
to remain – and it must change.
We have to understand that what is good for the consumers may
not always be good for the providers. We have many good friends
who are totally dedicated to the ideals of justice for all. For
us, the need for medical care and counseling are so evident that
we do not perceive the dilemma of the professionals needing patients
to treat, the lawyers needing conflict, and the prisons requiring
more and more inmates. There is a conflict of interest nor easily
solved.
Even non-profit organizations created to help the families and
all consumers must remain politically correct in order to avoid
conflict with donors and supporters. Many mentally ill persons
belong to organizations that claim to represent the interest of
all consumers and yet those organizations avoid supporting those
who, because of lack of insight, refuse medical care and need assisted
outpatient treatment ordered by a judge. Thus, those with the greatest
needs and problems are often the most disenfranchised!
We must learn to speak to our legislators
during the whole year; even if just to let them know that we
exist and care. Again - forget
stigma - all legislators and aids are friendly; after all, we elected
them. Mention that you are a constituent when asking for an appointment.
If possible, visit with another relative. Become the aid’s
friend, you will be welcome and will discover that almost everyone
knows a mentally ill person and loves to hear that you are defending
them.
Drop a letter to the President and also to the Governor of your
State. They have the power to veto all legislation. The States
decide how to care for the mentally ill, but it is the Congress,
in Washington, who decides the most important matters such as funding
research, confidentiality laws, the stream of funds for substance
abuse and/or mental illnesses, parity insurance, grants for housing
the homeless, Medicaid not paying for long-term hospital care,
etc. Get to know your Congressmen so they know about your needs
and how the community is affected by the lack of services. Of course,
by visiting their offices, you prove to them that you are informed
and vote. They all like to help, because your relatives, neighbors
and friends also vote. And, legislators want to be re-elected.
During the state legislative sessions, find out the number of
each bill you support or reject, and be clear as to what you
want the legislator to do. Find out who is in favor and who is
against your bill - and why. Be cordial and don't complain or
criticize; and be brief. The legislators vote on all legislation,
but the ones with power are the Speaker of the House, the President
of the Senate and the members of the majority party. Also important
are the Chairs and Vice Chairs of the committees on Health, Corrections,
Justice, Budget, Appropriations, etc. They are not interested
in the whole story of your life, just that you are a volunteer,
and whom you represent and why. If they offer their support,
check later on, in the Internet, to see if they voted as you
requested; if not tell everyone not to vote for them. On the
Internet - www.leg.state. (your state initials)us - and in your
city’s phone book, you will find a list of your legislators.
Be patient and remember, that we are part of the solution and
not the cause of the illnesses.
We will “count” - with the cooperation
of all those affected by these illnesses. If you have any suggestions,
please
let us know. All ideas are good, since they increase the possibilities
by talking about the issues and finding solutions. Silence is the
enemy.
With kind regards,
Press Release - March 2004
From Guilty and Ashamed to Outspoken and Intrepid
Families of Untreated Mentally Ill Persons Look for Solutions
The families of persons with difficult–to-treat
schizophrenia, bipolar disorders, severe depressions and co-occurring
disorders,
are raising their voices to ask for changes in the way our relatives
are perceived and treated. Now we know that these illnesses affect
one in five families; that they are biological (genetic) and that
no one is at fault. Rather than dwelling in guilt and culpability,
we are reaching elected officials, legislators, judges, and scientists,
and asking them to address the lack of effective medical and psychological
care for our relatives. Well-funded, effective and sustained medical
care for persons with mental illnesses will help the nation by
diminishing criminal interventions, suicides, domestic violence,
juvenile delinquency, substance abuse, homelessness, child abuse,
divorces, bankruptcies, etc.
Since many of our relatives are too sick to advocate for themselves
and their families are the ones who know the full range of their
devastating, recurrent symptoms, we recommend the following steps
to change attitudes and priorities:
1) Examine the confidentiality laws and listen to the families,
as they are the main observers of the inappropriate behavior of
their relatives.
2) Reconsider the concept of "denial" by understanding "lack
of insight or anosognosia” in mental illnesses, as described
by the Treatment Advocacy Center.
(www.psychlaws.org) (1)
3) Diminish the adversarial position of the courts. Most mentally ill persons
are not
criminals in need of punishment, but rather biologically sick individuals in
need of help in accepting treatment, half of them unable to realize that their "bad
luck" is due to a treatable illness.
4) Consider the biological nature of behavior and the probability that psychotic
symptoms may overcome the "will" as the late Dr. Abraham A. Low,
creator in 1937 of Recovery, Inc. (www.Recovery-Inc.org) teaches. How "Feelings
are spontaneous; they rise and fall and run their course, and no deliberate
effort will ever put a halt to their spontaneous progression". (2)
A survey prepared by Harvard Medical School
in May 2003, finds: "U.S.
Has High Rate Of Mental Illness, Low Rate Of Treatment Compared
To Other Countries.”
http://www.sciencedaily.com/releases/2003/05/030507080958.htm Schizophrenia,
September 2003.
The same survey analyzed data from Canada,
Chile, Germany, the Netherlands and the United States, and found
that "between
one-third and two-thirds of people with serious disorders in the
five countries reported receive no treatment." Corresponding
author Ronald Kessler, professor of health care policy at Harvard
Medical School's Department of Health Care Policy, said he and
his co-authors were also struck by the inadequate treatments in
this country.
In other countries, those who are unable
to realize they are mentally ill and, consequently, refuse care,
are medically treated
because they are sick. In Florida, by law, the caregivers must
wait until they are also “dangerous to themselves or others” before
they may be involuntarily treated. Many totally psychotic patients
never become dangerous. Accordingly, they are “allowed” to
remain sick and without treatment for life, become homeless or
be cared by the families. In Chile, the doctors have the authority
to decide if involuntary treatment is needed, (3) and the cost
of care is usually covered by universal insurance.
It is also important to consider the economic burden imposed on all the taxpayers
when very sick persons remain trapped in the nightmare of their symptoms. The
tremendous costs of the often never-ending cycles of incarceration, hospitalization
and homelessness far outpace the cost of providing medical care and allowing
the mentally ill to have productive lives.
Cordially,
1) Treatment Advocacy Center, www.psychlaws.org and the book " I Am Not
Sick - I Don't Need Help" by Xavier Amador, Ph.D. http://www.Vidapress.com
2) "Mental Health Through Will Training" by the late
Abraham A.Low, MD. (Part II, Chapter 1, "The Will Says Yes
or No", Page 131, Sixteenth Edition, 1968.) The former mental
patients and the nervous persons who train themselves in the techniques
of Recovery, Inc. have discovered that Dr. Low's observations coincide
with the latest scientific discoveries, and the experiences of
the families of mentally ill persons. We know now that disturbances
in brain's electrochemistry cause bizarre thoughts and the irrational
feelings of fear, sadness, etc. that characterizes the illnesses
.
3) Ley of Internacion Decreto #570 of August 28,1998 implemented
since January of 2001)
NEW FREEDOM COMMISSION ON
MENTAL HEALTH
http://www.MentalHealthCommission.gov/mission.html
This letter, written by a family member,
was mailed to all the members of the President's New Freedom Commission,
on September 10, 2002.
To: Michael F. Hogan, Chair of the President’s New Freedom
Commission on Mental Health, Members of the Commission, Ex-Officio
Representatives and Staff Members.
Dear Commissioner: Reasons to disseminate
information about mental illnesses.
Howard Hughes, with all his millions, died
tortured and irrational. Theodore Kaczynski – the Unabomber
- is in prison and still feels he is not mentally ill. And my non-dangerous,
untreated mentally ill husband is, per his own decision, a total
recluse. They are all victims of anosognosia or lack of insight.
Scientists have known for over 20 years that
half of the persons with schizophrenia, bipolar disorders, severe
depression, and co-occurring disorders (substance abuse and mental
illness) refuse treatment because of a biological inability to comprehend
that they are mentally ill. They suffer from lack of insight, or
anosognosia, an additional - non-medically treatable – symptom.
Our relatives are not “in denial”, but unable to recognize
that the feelings, voices, delusions, or irrational thoughts are
due to malfunctions in the brains’ frontal lobes. It is up
to us to understand their predicament, since it is not in their
power to control or change the variety of symptoms associated with
psychosis. It is almost impossible, without the help of an outside
authority, able to implement consequences – like going back
to the hospital - to convince a person to take medicines for an
illness they do not feel they have.
Forty-one states have modified their laws
to allow judges, after due process and with all the protection of
the law, to order our relatives to take medications. The experience
of family members and professionals is that when the families fully
accept and understand the true nature of lack of insight, the dynamics
in the family change and there is hope for continuity of care. When
the medications diminish the symptoms, our dear ones are more willing
to accept medical advice. A few mentally ill persons, for whom the
medicines do not work, require long-term institutional care.
Since these illnesses are chronic and frequent
relapses are common, it is more economically sound, and effective
to supervise the severe non-compliant mentally ill patient in programs
like Assisted Outpatient Treatment, than to allow them to remain
psychotic in the community.
These issues of “involuntary commitment”
and “assisted outpatient treatment,” are labeled in
academia as "controversial", a concept interpreted by
many as too difficult for the average person to understand. Without
the support of scientific research, we all felt until now, intimidated
and afraid to be rendered guilty of tampering with everyone’s
civil rights. To continue protecting their civil rights only allows
our loved ones to remain psychotic, addicted to substances, wandering
the streets of the USA, wasting their lives in jails and using,
over and over again, most of the economic resources available to
treat ALL mentally ill persons. We cannot forget that, not too long
ago, freeing the slaves and fighting for an end to discrimination
were also considered “controversial” subjects.
Accepting the reality that lack of insight is difficult; it will
require an evaluation of our own concept of what we are as human
beings, intruding into theology, psychology, ethics, etc. Until
now, we believed we were intelligent, successful, and sensitive
just because of our own upbringing and decisions. Now, apparently,
after studying the minds of persons with mental illnesses, some
of us realize that we are mostly the products of our own fragile
biology.
The material attached describes the point
of view of some families and friends. Most of us have lost the stigma
and culpability and are ready to proclaim to the world that mental
illnesses are: biological disorders, no one is at fault, no one
has done anything wrong, and with good medications already available,
counseling, supervision by well paid case managers, etc. there are
reasons to trust and hope for a better world.
The Commission is confronted with difficult
challenges: 1) to reconcile the views of those interested in keeping
things as they are, with the views of those willing to embrace changes;
2) to stop wasting taxpayer’s money in programs that do not
work and 3) the most complicated issue, to promote changes in the
law to incorporate the new reality of biological lack of insight.
Please do not recommend additional studies. The knowledge is already
available, and what is needful is to use it by taking action. In
the states where Assisted Outpatient Treatment is implemented properly,
the cost of re-evaluations and re-hospitalizations, police, judiciary
interventions and homelessness have diminished, saving money to
the states and improving the quality of life for everyone.
One necessary step will be to recommend to
the National Institute of Mental Health and the Department of Mental
Health and Human Services the dissemination into the community the
fact that anosognosia is a difficult symptom to conquer, and that
our dear ones are better off when the relatives and society persevere
in providing medical treatment. Scientific research and the experience
of families and caretakers have proven this to be true.
Sincerely,
************************************************************************************************************
Miami, July 31, 2003
The Honorable George W. Bush
The White House
Washington, DC
Dear Mr. President:
Ref.: PRESIDENT'S NEW FREEDOM COMMISSION ON MENTAL HEALTH
The just released report of the President's New Freedom Commission
on Mental Health proves once again that there is a conspiracy of
silence surrounding the need to help people with severe mental illness
who refuse treatment due to lack of insight or anosognosia.
Ask yourself why the Commission did not address this life or death
issue. In the past, Dr. Tom Insel, the Director of the National
Institute of Mental Health and thus one of the nation's foremost
experts on mental illness, has clearly indicated that this is a
difficult and urgent problem: "The problem of lack of insight
is certainly a profound challenge. One that is unfortunately at
the heart of the disability for many people with schizophrenia."
The report fails to address short term involuntary evaluations,
long term hospitalization, and court ordered outpatient treatment
for persons who refuse psychiatric treatment. It seems the families
of many seriously ill persons are destined to continue supporting,
feeding and caring for their loved ones without any help from our
state or local government. And, pity those seriously mentally ill
individuals who blame and consequently reject the family, do not
have one or have families who are unable or unwilling to assist
them. They become the "throw away" of our society: the
homeless or inmates in our prisons.
Since no one talks about mental illness in their families those
who have not experience these dilemmas do not believe
this could ever happen to them - until it does happen. We, the families
of untreated mentally ill persons, do not participate in studies
or commissions and our dear ones are not interviewed, studied or
participate in research ... How
could they? - They don't think that they are sick because the illnesses
affect their feelings, ability to trust, and to
even recognize that they are, in fact, desperately sick. They believe
that they are fine and it is their family members
who are in need of medical care.
Researchers at the Human Genome Project talk about genes and human
behavior and science has proven that mental
illnesses are biological illnesses caused, in part, by distortions
in brain electrochemistry. Psychiatric medicines work by modulating
and fine tuning neurotransmitters in the brain.
Please let us know if you find an answer. Many families expect and
are waiting for your help. Without changing the laws
to serve the mentally ill person without insight, the quality of
life and the security of hundreds of thousands are in jeopardy.
Sincerely,
Spokesperson - Families of Untreated Mentally Ill Persons
Miami, Fl.
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