by DJ JAFFE
Introduction
Before undertaking an effort to change involuntary treatment* laws, it
is important to see if your time is best spent in changing these laws
or improving the community based system. A good community system can dramatically
cut down on the use of involuntary treatment. On the other hand, it is
important to be aware of the cost of the status quo:
- 15,000 people with mood disorders kill themselves every year
- 3,000 individuals with schizophrenia kill themselves every year. (Put
another way; of the 2 million people who are living with schizophrenia
today, 300,000 of them will kill themselves.)
- Each year over 30,700 individuals with serious neurobiological disorders
(NBD) serve time in our jails (does not include state or federal prisons)
- Each year over 11 million days are spent by individuals with NBD in
jail (does not include state or federal prisons)
- 150,000 individuals with serious neurobiological disorders live on
the streets or in shelters
While a variety of factors account for these facts, the question has to
be asked, "would the lives of some people with NBD be improved if
they had had access to some form of involuntary treatment?" Current
involuntary treatment laws and policies in many places are inadequate
in that they:
(1) allow people who may not need involuntary commitment to be committed,
and
(2) deny some who may need access to involuntary treatment from receiving
it.
In the past few years, there has been a trend towards changing involuntary
treatment laws. There are two main reasons for this:
1. Media exploitation of 'mentally ill killer on rampage' stories is creating
public fear. The public wants the authorities to make the problem of violence
by people with NBD go away. Likewise, the public is becoming mad and feeling
helpless at seeing so many homeless mentally ill wandering the streets
and 'ruining' (sic) neighborhoods.
2. The other impetus for change continues to come from a well-funded 'mental
health bar' (lawyers who specialize in mental health from a civil liberties
perspective).
These lawyers (many associated the the federally funded Protection and
Advocacy Program, Bazelon Law Center, Civil Liberties Union, etc.) believe
that they have an obligation to protect the civil liberties of an individual
, even at the expense of the individuals health.
Hence, the "expressed" wishes of a consumer (regardless of whether
they have the ability to express their true wishes) are paramount. Since
the mental health bar's agenda, is a narrow civil liberties agenda, these
organizations often engage in legal pyrotechnics and intellectual gymnastics
to accomplish their aims, often at the expense of individuals with NBD.
Up until recently, it has been this second group, rather than the first
group which has dominated the debate. Unfortunately, consumer/family groups
like NAMI (at least from the national level) who are advocates for the
whole person, as opposed to just civil liberties, have failed to participate,
much less lead the debate. This is due to several factors:
1. Time and money: NAMI groups are underfunded and can not afford to hire
the technical skills (lawyers, lobbiests, community organizers) necessary
to effect change. Hence we tend to rely on volunteers who may or may not
have the time or expertise.
2. Desire to deny violence: Many NAMI members believe that it is in our
best interest to deny that individuals with even the most severe NBDs
are more prone to violence than others. They believe this is stigmatizing
and talking about it will prevent communities from welcoming housing and
services for people with NBD. Since the issue of violence is often at
the core of involuntary treatment decisions, the failure to address violence
stymies progress.
3. Fear of engaging in 'controversial' issues: There has been no written
consensus around involuntary treatment and most boards have not to tried
to rectify this. Just the use of the words "involuntary treatment"
carries so much emotional baggage that rational discussion is often impossible.
There are 5 preliminary steps to take before trying to change the laws:
1. Get educated about the history of the laws
2. Get educated about laws in your state and how they (don't) work in
the real world.
3. Get educated about the current status of research particularly as it
involves lack of insight, violence, treatment efficacy, health care costs
and involuntary treatment.
4. Develop a policy for your board based on the above.
5. Educate the membership/public about the policy and attempt to get other
organizations to buy in.
After you have done all this, you will be in a position to change the
laws.
1. History of involuntary treatment laws
Before attempting to change the laws in your state you must get a good
education on the history of involuntary treatment laws. There have been
many court cases and laws passed which provide the framework within which
you must operate. I can not emphasize this enough. Without this background
on what has gone before, and how we got where we are, you will be out-gunned
by those trying to prevent you from making changes.
The single most important book you should read is Madness in the Streets:
How Psychiatry and the Law Abandoned the Mentally Ill by Rael Jean Isaac
and Virginia Armat (Free Press). It's available in paperback and through
NAMI. This is a must-read that explains the issue of involuntary treatment
from a legal/political/social perspective. What follows is an extremely
basic introduction to some of the concepts you should know about. The
state has "police" and "parens patriae" powers Involuntarily
committing someone involves taking away freedom. Hence, it is not a decision
that can or should be made lightly.
Our laws provide two reasons to justify taking away someone's rights.
The first is to protect the citizenry from harm and the second is to protect
the individual from harming himself. Protecting the citizenry is often
called an exercise of the state's "police powers". Protecting
an individual from harming him/herself is often called an exercise of
the state's "parens patriae" powers. Almost all state laws involving
commitment, evolve from these basis. When someone is actively trying to
shoot someone, there is no doubt that the state can detain that person
to protect society. When someone is trying to shoot their own self, there
is also no doubt that the state can detain the person.** But when the
act is less overt, it is often a gray area. The question often comes down
to 'how do you define dangerousness?'.
The mental health bar continuely argues that someone must be 'imminently'
and/or 'provably' dangerous before the state can exercise its powers and
remove the person's freedom. For example, the Civil Liberties Union once
brought in an expert witness to testify that just because a homeless mentally
ill psychotic woman was eating feces, that it would not kill her and therefore
she was not in imminent danger of being a danger to herself. Others may
argue that an individual should only have to exhibit a condition which
will predictably lead to dangerousness before they can be confined. That
way they can be helped before they become dangerous, rather than after.
This offers greater protection to both society and the individual.
There have been numerous court cases which have addressed this issue.
(ex. Lessard vs. Schmidt, etc) But I would caution the careful advocate
from placing blind faith in these previous decisions. First of all, all
court decisions can be overturned. For example, at one time, 'separate
but equal' was a concept endorsed by the Supreme Court. But it was overturned.
Secondly, many decisions are routinely misinterpreted by the mental health
bar to mean what they would like them to mean. For example, as a result
of the Supreme Courts Donaldson decision, many civil libertarians argue
that you cannot commit someone unless they are 'dangerous'. But Paul Stavos,
Esq., of the NYS Commission on Quality of Care for the Mentally Disabled
argues, "In its (Donaldson) decision, the Supreme Court specifically
spoke of someone who could 'live safely in freedom'. The justices weren't
thinking of malnourished individuals lost in delusions lying on park benches
in their own waste. I believe a well-crafted 'need for treatment' standard
would be judged constitutional by this Supreme Court". Unfortunately,
the state rarely exercises its ability to commit individuals with NBD
under parens patriae standards. These standards are most often used by
the state to prevent children from abuse and to provide care for the developmentally
disabled. The problem here is that our laws have not kept pace with the
current status of research proving NBD is real (see below).
Many feel a return to the use of the state's parens patriae powers to
help those who while they may not be dangerous, certainly need help, would
be beneficial. Individuals have a right to the least restrictive treatment,
not the most beneficial treatment Once a decision is made to remove someone's
civil rights, as a result of Supreme Court cases like Dixon vs. Weinberger,
the person must be treated in the 'least restrictive environment'. Some
think this is good, others argue that perhaps the individual should be
in 'the most beneficial setting', rather than the 'least restrictive setting'
(assuming they are not the same thing); or that there should be some balance
between the two. In addition, the concept of least restrictive setting
would seem to argue for a greater use of outpatient commitment (this is
a court order which allows someone to live in the community provided they
follow a court ordered treatment plan such as staying on meds or off drugs.).
Unfortunately, very few states make use of involuntary outpatient commitment.
Instead, they rely on the more restrictive (and often abusive) inpatient
setting. Commitment does not equal treatment If an individual meets the
criteria for commitment, they will be committed to the 'least restrictive
environment.' But that does not mean they will automatically be treated.
As a result of decisions like Rivers vs. Katz; Rogers vs. Okin; Rennie
vs. Klien; In the Matter of Richard Roe, etc., in many states individuals
receive one court or administrative hearing on whether or not they are
'dangerous' and should be involuntarily hospitalized and, in cases where
they resist treatment, a second hearing on whether or not they should
be involuntarily treated. These hearings often occur weeks apart resulting
in the ludicrous, cruel, expensive, and dangerous proposition of having
someone hospitalized but not allowed to be given treatment.
The reason for this is that there are two different criteria used. You
can remove someone's civil rights (commit) them if they are dangerous.
But even someone who is dangerous, is still assumed to 'have capacity
(or competence)" to make their own treatment decisions. Hence, one
can be acting dangerously, yet still retain capacity. In that case the
individual would be committed but have a right to refuse treatment and
a second court hearing would be needed on whether or not they retain capacity.
If they have capacity, they can not be treated over objection. It is important
to note that not everyone who 'lacks capacity' will be automatically treated.
Nor should they. For example, if they don't respond to medicines or treatment
it makes no sense to treat them. A decision that someone lacks 'capacity'
only gives someone else the right to make the treatment decision for them.
It does not mandate that they give treatment. This fact is sometimes purposefully
ignored. When considering all this please remember that a consumer may
have the ability to 'voice' a decision, yet not have the capacity to logically
come to the decision they are giving voice to. Again, please read Madness
in the Streets, for a more complete and useful understanding of the laws.
2. Examine the laws in your state or province and their real-world application.
After you have a general understanding of the issues, and before attempting
to change the laws in your state it is important that you get a good handle
on what the laws in your state say and how they are or are not enforced.
In addition there are two kinds of laws in each state. "Codified
Law" is law that came about because the legislative body passed the
law. It was a specific act of the legislature. "Case Law" comes
about as a result of judicial decisions. In other words, in interpreting
Codified Laws, judges often create legal precedents that are as binding
as laws. You have to know not only what is written in the law, but what
has been decided by the courts. You also have to know what policies your
health care establishment have adopted in interpreting these laws. You
do not have to be a lawyer to do this. You only need to be resourceful.
It is not easy to find out what the laws are in your state.
Very few people are knowledgeable about this esoteric area and even those
who are, often make mistakes (self-included). So the very first step is
to collect information from as many different sources as you can. If you
rely on a single source for your information, I can pretty much say you
will not get the whole picture or perhaps even an accurate picture. Following
are people you should ask for information from. Ask for the information
from all of them:
1. Ask all your elected representatives in your state capital (Assembly
and senate) for a copy of the relevant laws. The more people you ask,
the more different bits of information you will be sent.
2. Ask your local Protection and Advocacy Organization and Civil Liberties
Union if they can provide you with a copy of the law and any materials
they have on it. Try to talk to someone at these organizations to see
how they feel the law is or isn't working.
3. Ask your hospital administrator for a copy of their policies on involuntary
treatment. Very often, hospitals have written policies which were written
in reaction to laws and court decisions. This info will show you how your
hospital is applying the decision on a person to person level. Find out
how they feel the procedure has worked.
4. Ask your state Department of Mental Health for a copy of all laws and
policies they have on involuntary treatment. Again: ask them how they
feel the law is working.
5. Ask your local American Psychiatric Association if they have a resident
expert on these issues who you can talk to.
6. Ask your local American Bar Association if they have a subcommittee
or expert on these issues who you can talk to.
7. Talk to members of your AMI who have been involved in a personal level
with this issue and find out what their experiences have been. This is
very important. My research has shown that in many areas, what the laws
say, and what is actually done, are not always the same. The fact is,
not many lawyers, doctors, or judges are expert in this area, and often
application of the laws is inconsistent with the content of the laws.
Not only must you know what the laws say, you must know how they are enforced.
8. Talk to consumers who have experienced involuntary treatment. I have
found that this is best done one on one. Consumers are uniquely qualified
to tell about the quality of care they did or did not receive as a result
of involuntary proceedings. They may also have good information on what
actually takes place during the proceedings. While many consumers are
against involuntary treatment in every case, many more (in my opinion)
believe that there is a time and place for it. (However, few consumers
believe that changing laws is worth the time spent vs. the same time spent
on reforming the system.)
9. Start a clipping file of newspaper articles you come across about these
issues. Keep notes of everyone you speak to. When it comes time to enact
the legislation, there will most likely be hearings on it, and you may
need to contact some of these people to see if they will be willing to
testify. When you receive a copy of the law, make sure it is up-to-date.
Many states publish laws when the laws are enacted. But if the law is
updated, the updates are published in annual updates. If you are getting
a copy of a law out of a code book it is important to look at the updates
to make sure you have the most current information.
3. Research relevant to involuntary treatment
In addition to understanding the legal/political perspective, it is imperative
to understand the medical perspective. This is extremely useful ammunition
in the fight to change laws. The most relevant information to changing
the laws has to do with scientific research on:
- Schizophrenia is a real disease and can be accurately diagnosed.
- Symptoms include hallucinations and delusions.
- As a group, untreated persons with NBD who have these symptoms are
more violent than general population.
- Medicines help prevent symptoms
- Some individuals lack insight into their illness and/or capacity to
make treatment decisions.
- Some individuals don't comply with treatment. Therefore, we should
help these individuals before they become danger to self or others.
The best work on insight has been done by Dr. Xavier Amador (NYS Psychiatric
Institute, Schizophrenia Research Unit, 722 West 166th St. NY NY 10032
(212-960-2352)).
The best work on violence has been done by Dr. John Monahan.
The best work on compliance and the cost of noncompliance was done by
Dr. Peter Weiden (St. Luke's Roosevelt Hospital Center, Psychiatry Tower
8, 428 West 59th St. NY NY 10019. Ph: 212-523-6681).
The best work on competency was done by Dr. Thomas Grisso (508-856- 3625)
and Dr. Paul Applebaum.
The best work on how good community services can cut down on the need
for involuntary treatment has been done by Dr. Ron Diamond (University
of Wisconsin Department of Psychiatry and Medical Director, Mental Health
Center of Dane County 625 W. Washington Ave, Madison, Wisconsin 53703
( 608-263-6100).
The best single book incorporating much of this information is the new
edition of Surviving Schizophrenia, by Dr. E. Fuller Torrey. Understanding
the research is not easy because when different researchers and individuals
talk 'mental' illness they are talking about different populations with
different illnesses and severities. For example, only 1% of Americans
have schizophrenia, but 5% of Americans are 'seriously mentally ill',
and the Mental Health Association and American Psychiatric Association
talk about '1 in every 5' Americans developing a mental illness. The mental
health bar, consumers, and some monomyopic 'stigma busters' like to use
the larger numbers when quoting incidents of violence because this makes
the percentage who are violent, ill, not working, in jail, in hospitals,
etc. seem lower than it would otherwise be*** . However, NAMI is an organization
of the most seriously ill (otherwise we wouldn't join) and it is dishonest
to use numbers that reflect 'total mental illness' in order to water down
less than flattering realities. For purposes of this paper, I will focus
on schizophrenia.
I. Schizophrenia is a real disease that can be diagnosed
You will come across people who will argue that 'mental' illness is not
an illness, but an alternative lifestyle freely chosen. A mere "label"
that society uses to discriminate against those who are different. These
people are often easy to identify because they usually associate themselves
with the disproved theories and writings of Thomas Szasz, Peter Breggin,
and/or Ron Hubbard (Scientology). If 'mental' illness is not a real disease,
they argue there can be no real treatment: voluntary or otherwise.
While it is clearly true that the APA and Mental Health Association may
be willing to classify some anti-social or undesirable activity as being
a 'mental' illness, and that like with every other disorder, some people
are misdiagnosed--it is established beyond a reasonable doubt that schizophrenia,
manic-depression, obsessive-compulsive disorder, depression and many other
disorders are in fact neurobiological disorders (NBD). Clearly those who
would deny this have not kept up with modern science. "In summary,
based on studies of gross pathology, microscopic pathology, neurochemistry,
cerebral blood flow, and metabolism, as well as electrical, neurological,
and neuropsychological measures, schizophrenia has been clearly established
to be a brain disease just as surely as multiple sclerosis, Parkinson's
disease, and Alzheimer's disease are established as real brain diseases.
The dichotomy used in the past, whereby schizophrenia was classified as
a "functional" disorder as distinct from an organic disorder
is now known to be inaccurate; schizophrenia has impeccable credentials
for admission to the organic category...)" -Dr. E. Fuller Torrey,
Surviving Schizophrenia "... The United States Government's Congressional
Office of Technological Assessment (OTA) found the following evidence
that biological factors are involved in schizophrenia, bipolar disorder,
major depression, OCD, and panic disorder: * Medications cuppress symptoms
associated with disorders, * Specific mental disorders can often be typified
by distinguishable clinical features, such as age of onset, symptoms,
and course. *These disorders may have associated "physical "
symptoms. such as altered sleep patterns in depression. * Known physical
agents and drugs can produce some symptoms of mental disorders, demonstrating
that biological factors can in fact be causative. * Genetic studies show
that the disorders are influenced by inheritance. *Other areas of research
provide evidence about correlated biological factors and suggest testable
hypothesis as to causation." -The Biology of Mental Disorders: New
Developments in Neuroscience. US Congress Office of Technology Assessment.
Neurobiological disorders can be accurately diagnosed: "Contrary
to persistent myth, mental illnesses are both real and definable"
-Dept. of Health and Human Services Health Care Reform For American with
Severe Mental Illnesses: Report of the National Advisory Mental Council
Schizophrenia is a real, diagnosible illness. And certain symptoms of
the illness may cause some people to become violent.
II. Symptoms may include hallucinations and delusions and these may
make someone violent.
Individuals react to their environment as they perceive it. For example,
if you think you are being hit, you may run or hit back. Individuals with
schizophrenia may have hallucinations and delusions. In fact, these are
often integral to accurate diagnosis. And when someone has a false belief,
they may act on it. That may be why some individuals with schizophrenia
become violent: they are reacting to delusions and hallucinations which
are part of the illness. "Individuals with schizophrenia experience
delusions and hallucinations.
Delusions are beliefs that that are clearly implausible but that are compelling
and central to individuals life experience. Persons with this disorder
may be suspicious or paranoid in nature. For example, a patient may believe
that he or she is an historical figure or that someone has placed a transmitter
in his or her brain.... Hallucinations are perceptions without an objective
basis. They most commonly take the form of voices or, less frequently,
visions, bodily sensations, tastes or smell. ...The voices tend to be
highly personal and may direct the patient to do some act, sometime commanding
self mutilation or other violent behavior." -The Biology of Mental
Disorders: New Developments in Neuroscience. US Congress Office of Technology
Assessment.
Hallucinations and delusions--which are an inherent component of the illness
can cause people to act violently. III. Individuals with NBD, as a group,
are more violent than general population One of the main reasons to change
involuntary treatment laws is to prevent individuals with NBD from becoming
violent and ending up killing themselves, killing someone else, or winding
up in jail for some violent offense. "Proving" that people with
NBD have a greater propensity towards violence than the rest of the population
may bring you into conflict with so-called stigma busters who believe
it is stigmatizing to acknowledge this. It may also bring you into conflict
with minor consumer organizations who (by assuming 20% of the population
is 'mentally ill" or alternatively, denying anyone is mentally ill),
erroneously believe that individuals with NBD are not more prone to violence.
In other words, in your advocacy efforts, people are going to see 'data'
to suggest that individuals with NBD are no more violent than others.
I encourage you to read those carefully to see 1)What population they
are referring to; 2) Were they published in a legitimate peer reviewed
publication; 3) Were they authored by someone affiliated with an organization
that has a pre-determined point they want to make; and 4) How long ago
was the study completed.
On the other side, following are some reports that make the point that
there is indeed a correlation between serious NBD and violence:
"Recent studies, including two carried out in random community surveys,
have been virtually unanimous in finding that seriously mentally ill individuals,
as a group, are significantly more dangerous than the general population.
The studies also suggest that this difference is attributable to a small
percentage of individuals who are not compliant with their medication."
- Violent Behavior By Individuals With Serious Mental Illness Dr. E. Fuller
Torrey Hospital and Community Psychiatry
"The data that have recently become available, fairly read, suggest
the one conclusion I did not want to reach: Whether the measure is the
prevalence of violence among the disordered, or the prevalence of disorder
among the violent, whether the sample is people who are selected for treatment
as inmates or patients in institutions or people randomly chosen from
the open community, and no matter how many social and demographic factors
are statistically taken into account, there appears to be a relationship
between mental disorder and violent behavior. Mental disorder may be a
robust and significant risk factor for the occurrence of violence as an
increasing number of clinical researchers in recent years have averred."...
-Mental Disorder and Violent Behavior John Monahan
IV. Medicines and other treatments can help people function in the community
If indeed hallucinations and delusions (which are integral to schizophrenia)
cause some individuals to act violently, can anything be done about it?
The fact is: medicines and other treatments can, for many but not all,
reduce the symptoms that may lead to violence. The following two charts
from the Dept. of Health and Human Services Health Care Reform For American
with Severe Mental Illnesses:
Report of the National Advisory Mental Council show that the efficacy
of treatments is fairly high: Treatment efficacy chart from Office of
Technological Assessment showing the long- term successs rate and short
term success rates for schizophrenia, depression, manic depression, etc.
V. Individuals with NBD often lack insight into their illness and/or
capacity to make logical decisions
If someone does not even know they are ill, they won't take their medicine
since there is nothing to cure. Lack of insight is a common symptom of
schizophrenia: "The results indicated that poor insight is a prevalent
feature of schizophrenia. A variety of self awareness deficits are more
severe and pervasive in patients with schizophrenia than in patients with
schizoaffective or major depressive disorders with or without psychosis
and are associated with poorer psychosocial functioning. Conclusion: The
results suggest that severe self-awareness deficits are a prevalent feature
of schizophrenia, perhaps stemming from the neuropsychological dysfunctional
associated with the disorder, and are more common in schizophrenia than
in other disorders." Awareness of Illness in Schizophrenia and Schizoaffective
and Mood Disorders by Dr Xavier Amador, etc., in Archive of General Psychiatry,
October 1994.
Insight is an important component of recovery: "Of studies which
have investigated the question of the relationship between level of insight
and outcome, a majority indicate that better insight into illness and
better insight regarding benefits of treatment auger well for positive
clinical outcome and compliance with treatment." Poor Insight in
Schizophrenia by Xavier Amador, Ph.D., and David H. Strauss, M.D., Psychiatric
Quarterly, Winter 1993
Even if an individual knows they are ill, they may still lack the capacity
to make a treatment decision that is in their own best interest. They
may not understand the treatment being proposed or it's likely courses
and outcomes. Between 23 and 52% of individuals with schizophrenia lack
decisions making capabilities. "Summary of main findings: First,
on the measures of understanding, appreciation, and reasoning, as a group,
patients with mental illness more often manifested deficits in performance
than did medically ill patients and their non-ill control groups.
Indeed, when the most highly impaired subgroups were identified on each
measure, they were composed almost entirely of patients with mental illness....(A)mong
patients with schizophrenia, the minority with poorer performance on the
measures of understanding and reasoning tended to manifest greater severity
of psychiatric symptoms, especially those of thought disturbance...These
results are in keeping with both theory and empirical findings regarding
cognitive deficits associated with schizophrenia. ...For any given measure
(understanding, appreciation, and reasoning) approximately 25% of the
schizophrenic group scored in the 'impaired' range compared to 5%-7% of
Angina patients and 2% of community controls. When all measures are combined,
52% of patients with schizophrenia showed impairment on at least one measure.
Clinical implications: ..the results suggest that a diagnosis of schizophrenia
should increase ones attention to the possibility of deficiencies in abilities
related to legal competence." -Thomas Grisso and Paul Appelbaum,
The MacArthur Treatment Competence Study (III):Abilities of patients to
consent to psychiatric and medical treatments. Law and Human Behavior,
Vol. 19, No 2. 1995.
VI. Individuals with schizophrenia frequently resist treatment
As a result of lack of insight into the fact they are ill, or the lack
of capacity to make a treatment decision, many individuals with NBD fail
to follow the treatment plans that can prevent them from becoming violent.
"Approximately 7% of patients hospitalized for mental illness refuse
treatment. " Hoge, et al. Archives of General Psychiatry 1990 There
is a big difference between those who take medicines and those who don't
"The monthly relapse rates are estimated to be 3.5% a month for patients
on maintenance neuroleptics and 11% a month after patient-initiated medication
discontinuation.
Post discharge noncompliance rates in the community settings are estimated
to be 7.% a month." -Cost of Relapse in Schizophrenia Peter Weiden
and Mark Olfson Bulletin. Schizophrenia (In press) This non-compliance
diverts resources from other areas "An estimated 257,446 multiple-episode
(greater than or equal to 2 hospitalizations) patients were discharged
from short stay (less than or equal to 90 days) inpatient units in the
U.S. during 1986.
The estimated aggregate baseline inpatient costs for the index hospitalizations
of this cohort were $2.3 billion (1993 dollars). Within two years after
discharge the aggregate cost of readmission approaches $2 billion. Loss
of neuroleptic efficacy accounts for roughly 60% of the rehospitalization
costs and neuroleptic noncompliance for roughly 40%....The specific cost
of rehospitalization attributable to neuroleptic noncompliance is approximately
$700 million with $370 million for the first year and$335 million for
the second." Cost of Relapse in Schizophrenia, by Dr. Peter Weiden
and Dr. Mark Olfson. Schizophrenia Bulletin (In press)
We can say from this information, that schizophrenia is a genuine biological
disease of the brain. That one of the symptoms of the disorder is a lack
of insight. Another symptom can be an inability to make rational decisions.
As a result of this lack of insight, and other issues, many individuals
do not follow their treatment plans. Lack of compliance with treatment
plans is one of the contributing factors to violence. Therefore it should
be societies obligation to incorporate these scientific findings in current
legislation.
4. Develop a policy that makes the laws reflect science.
In some states, you may want to focus on making it harder to involuntarily
treat someone, while in others you may decide that the criteria are too
stringent. Quality of services may be one of the determining factors in
this. Now that you understand the history of the laws, how they work in
your state, and the current status of relevant research, you are ready
to develop a policy for your own state.
You may want to use the policy proposed by AMI/FAMI as a starting point
for a policy in your state. While customizing a policy for your own state,
there are several specific areas of the law you will want to look at.
I suggest you start by asking each of the following questions. If your
answers indicate that improvements can be made, you might want to develop
a policy to accomplish that:
1. Does your state have a law (or should it have a law) that allows for
someone to be involuntarily committed for a limited period of time (ex.
72 hours) for evaluation? What is the criteria by which someone can be
detained. What is the 'burden of proof' the officer must bear when making
a decision? Is this law being misused to lock people up? Are people detained
under this law in a psychiatric facility or jail facility? Are non-violent
detainees protected from others? Are detainees given access to a lawyer?
Are their families notified? What is the criteria for making a decision
to detain? Who makes the decision? What happens to them during that 72
hours?
2. Is a court review or independent administrative review held before
someone can be involuntary committed or treated? Is the person who is
performing the review knowledgeable about NBD? Are they free of political
influence? Is the decision to commit or treat over objections periodically
reviewed? How often? By who? With what information?
3. How are the courts interpreting dangerousness? Broadly? Narrowly? Consistently
throughout the state? Consistently judge to judge? Should the definition
of dangerousness be expanded? Contracted?
4. Is dangerousness defined to include "Grave Disability". (This
would allow the treatment, of a person with NBD who is "substantially
unable, except for reasons of indigence, to provide for any of the person's
basic needs, such as food, clothing, shelter, health or safety causing
a substantial deterioration of the person's ability to function on on
the person's own").
5. Is dangerousness defined to include "substantial deterioration"?
(This would potentially include for commitment, someone who "as a
result an NBD, is likely to cause harm to himself or others or to suffer
substantial mental or physical deterioration if he is not given inpatient
or outpatient treatment.")? Is the presence of absence of these standards
good or bad?
6. Are commitments allowed under parens patriae standards? Is there a
"lack of capacity" standard which would allow the treatment
of someone "who as a result of the mental disorder is unable to fully
understand and to make an informed decision regarding his need for treatment
or care and supervision."? Is the presence of absence of these standards
good or bad?
7. If someone is committed will they automatically be treated, or will
they be allowed to refuse treatment? Do you need one hearing for commitment
and one for treatment? If so, do they both take place at the same time
or is the treatment hearing delayed? How often is the treatment hearing
reviewed? Do consumers have input into their treatment? Does the treatment
decision take into account what has or has not worked in the past? As
a result of the Rivers v. Katz individuals in New York State who have
been involuntarily committed to a hospital because they are a 'danger
to self or others' or 'in need of treatment' have the right to refuse
treatment. If they exercise that right a judicial review is required to
determine whether they have the capacity to reject treatment. The hearing
usually doesn't occur for an extended period for many reasons including
the fact that administrative remedies must be exhausted first. The cost
of keeping these individuals in the hospital, while they are refusing
treatment and presumably dangerous, is approximately $10,500 per person.
Because these individuals are "danger to self or others' and are
not being treated, they are also a danger to others in the hospital. In
addition, and most important to us, the delay in treating these individuals
causes them needless suffering.
8. Is past history allowed to be considered when making an involuntary
commitment or treatment determination? Is the family allowed to present
this evidence? The doctor? The consumer? Are the records available to
the court?
9. Is the judge or administrative review board allowed to order 'outpatient
commitment'? For how long? Is the decision periodically reviewed? Will
community providers accept individuals under outpatient commitment orders?
Following is evidence that oupatient treatment (the least expensive and
restrictive form of treatment) does work: "In July 1983 Arizona's
commitment statutes were revised to allow the courts to order involuntary
outpatient treatment for the mentally ill. Using retrospective data from
medical and court records, patients at a county hospital in Tucson for
whom involuntary commitment was sought before outpatient commitment was
available were compared with similar groups of patients after outpatient
commitment was instituted.
Patients ordered to receive outpatient treatment did not differ significantly
in diagnosis or reason for commitment from patients committed to inpatient
treatment before the change in the law. However, shorter inpatient stays
were reported after outpatient commitment became available. In addition,
the percentage of patients who voluntarily maintained an active relationship
with community treatment centers six months after commitment increased
significantly after outpatient commitment was instituted (emphasis added)
" Involuntary Outpatient Commitment in Arizona: A retrospective study
.Dr. Robert A. Van Putten, etc. "This study is the first to evaluate
outpatient commitment (OPC) with a six month follow-up and to compare
its effects with those of release and involuntary (inpatient) hospitalization.
The data indicate that OPC is successful. When respondents show up and
begin treatment, OPC works in terms of keeping patients in treatment and
on medication, increasing compliance, permitting residence outside an
institution and social interaction outside the home, and maintaining patients
in the community with few dangerous episodes."
The North Carolina Experience with Involuntary Commitment: A Critical
Appraisal. Virginia Aldige Hiday, etc. "...Summary and Conclusions...For
the previously long-term institutionalized patient, a court order for
outpatient treatment, with its coercive component, can be crucial to medication
maintenance in the community until insight is achieved. For the rapid
recidivist, such an order can procure the compliance with medication necessary
to stay out of the hospital. And, for the outpatient, a court order can
obviate the need for hospitalization altogether"
Involuntary Administration of Medication in the Community: The Judicial
Opportunity Marilyn J. Schmidt, JD, etc. "...Recommendations...Outpatient
commitment, in which a seriously mentally ill individual can remain in
the community only as long as he/she takes medication and otherwise complies
with treatment specifications, should be much more widely used. The majority
of states have laws allowing for outpatient commitment but these are remarkably
underutilized. For an individual with tuberculosis and schizophrenia,
in some states the individual may be involuntarily treated for the tuberculosis
but not for the schizophrenia." Violent Behavior By Individuals With
Serious Mental Illness Dr. E. Fuller Torrey
As you can see, the scientific evidence is clear. Oupatient treatment
is a way to get help to its citizens who suffer from an NBD. I have only
seen one, widely criticized study suggesting involuntary outpatient commitment
doesn't work. It was done by the civil libertarian Mental Health Policy
Resource Center. It claimed to have analyzed all the scientifically sound
studies pointing to the efficacy of involuntary outpatient commitment,
and to have found a statistical Achilles Heel in every single one of them,
that peer review didn't turn up. They then proceeded to 'adjust' the peer-reviewed
data and thereby "prove" that none of these studies shows involuntary
outpatient commitment works. Most reputable researchers dismissed this
MHPRC study as a political, not scientific document.
10. What "burden of proof" does an officer have to meet to pick
someone up or a judge have to meet to order commitment and/or treatment?
Preponderance of evidence? Beyond a reasonable doubt? Information and
belief? Probable cause? Is this adequate?
11. Do the public defenders, judges, and police departments have a good
working knowledge of NBD and the laws surrounding it? If the law changes,
how will these groups and the public be educated about it? These are some
of the questions you should be asking. They will help you determine what
area of the law to try to reform. In the Advocate, is a proposal which
NAMI will be voting on. You can modify it for your own state needs regardless
of the outcome of the NAMI vote.
Write a policy, circulate it widely, get feedback, then bring it to your
board for approval. Remember: your policy does not have to be consistent
with the law or even the current interpretation of the constitution. The
policy should be changes you want to make. Very often the mental health
bar will argue against changes because "the laws the law". In
other words, they fall back on the mess they created as a reason to maintain
the status quo. Don't be fooled.
5. Educate the public and find partners
After your chapter or state organization has a policy, you will want to
see if you can get others to help you turn the policy into law. If your
policy calls for less use of the law, you may want to associate yourself
with consumer organizations, Protection and Advocacy Organizations, the
civil liberties union, disability advocates and probably, mental health
commissioners, provider organizations, and liberal politicians.
If your policy calls for making it easier to treat someone over objections,
you may want to associate yourself with community block associations,
police, attorney generals, real-estate interests, jail officials, anti-crime
politicians, the APA, some consumer councils, even NIMBY groups. All these
organizations have an interest in changing the laws, albeit for different
reasons than yours. But as long as they are willing to buy into your policy,
it is OK to work with these groups which historically have different interests
than NAMI.
You will also have to find a sympathetic lawyer and/or politician to help
you draft the actual legislation. Rarely will the legislation have to
start from scratch, rather it will modify some existing legislation. Because
you have a copy of the legislation, you may even find that you are able
to draft it yourself. But you will still need people in the legislature
willing to introduce it on your behalf. Exploit the media Unfortunately,
the media continues to exploit the misadventures of individuals with NBD,
via sensationalistic headlines. So when an individual with NBD becomes
involved in an act of violence, it is safe to say that the media is going
to play that story over and over.
Use these incidents to lobby for more (voluntary) treatment facilities
and for a change in the law to protect the small minority that becomes
violent when denied involuntary treatment. Historically 'stigma-busters'
have written to the media denying that individuals with NBD are violent
and admonishing the media for saying otherwise. I believe it is much more
useful to exploit these events to make the points you want to make. Newspapers
allocate a certain number of inches to each story. TV and radio allot
a certain number of minutes to each story. Rather than allowing them to
put whatever they want in the space, you want to use up the space or time,
by having them tell your story.
When a "mentally ill killer goes on rampage" in your community,
you can use that as an opportunity to tell the AMI story and get increased
attention to your efforts to reform the laws. Almost all incidents of
violence by people with NBD are the result of individuals who need, but
were not receiving treatment. The fact is that there is an increased incidence
of violence among individuals with NBD who are not treated. But there
is no increased incidence of violence among people who are treated. So
the key is to get them treatment. When you hear a news report about an
act of violence by someone with NBD, immediately call the local reporter
on every TV station and newspaper.
Do not assume you are too late. These stories tend to play out over several
days (and come up again during the trial and/or sentencing). Tell them
you are with the Alliance for the Mentally Ill and that
1. Individuals with NBD are no more violent than the population when treated.
2. The key is to get more community programs so more people who need treatment
can get the treatment and housing that can prevent this type of incident.
(Blame NIMBY groups, saying that their resistance to the programs that
can help people with NBD is causing the very incidents they fear.)
3. Tell the reporter, for that small percentage of individuals who may
not accept treatment even if offered, it may be necessary to change involuntary
treatment laws. Remember: Your reporter may not know that 'mental' illness
is a physical illness.
For more information on how to capitalize on media interest read How to
handle the media when a "Psychotic Killer Goes on Rampage" by
D. J. Jaffe. For more info about this presentation and/or to have the
author present it to other groups, contact: D.J. Jaffe, c/o AMI/FAMI,
432 Park Avenue South, NY NY 10016. (212) 684-FAMI. Notes * In this paper,
we will use the term "involuntary treatment". However, many
have suggested replacing the term with 'substitute judgement'. What involuntary
treatment involves is the substituting of one person's (medically disoriented)
thinking with the thinking of someone who is more capable of making rational
decisions.
The substitute judgement nomenclature seems to describe the process more
accurately and perhaps advocates should move to greater use of it. **
Recent decisions concerning assisted suicide for the elderly or chronically
hopelessly disabled may start to bring this into question. It would be
difficult to outlaw suicide while allowing assisted suicide. *** An example
of manipulating violence data came when I presented this report at the
NAMI Annual Conference in Washington in July 1995. One of the presenters
was attempting to show the low violence rate by people with schizophrenia.
He collected statistics from individuals discharged from three different
hospitals. The figures were obviously understated since they excluded
individuals with schizophrenia in jails, those who couldn't get into the
hospital, those who killed themselves, and those in long-term institutional
care.
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