How and why to change involuntary treatment and/or involuntary commitment laws in your state for persons with mental illness

by DJ JAFFE

Excerpted from presentation to chapters of National Alliance on Mental Illness

Introduction

(Editors Note: “Assisted Treatment” was formerly known as ‘involuntary treatment’ and/or ‘involuntary commitment’. The change in nomenclature was to recognize that generally, these forms of treatment are reserved for people with impaired decision-making abilities brought on by their mental illness. “NBD”=neurobiological disorders, a/k/a ‘mental illness”)

How and why to change involuntary treatment and/or involuntary commitment laws in your state for persons with mental illness

Before undertaking an effort to change involuntary treatment and/or involuntary commitment 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 and/or involuntary commitment. On the other hand, it is important to be aware of the cost of the status quo:

• 5,000 individuals with schizophrenia and other serious mental illnesses kill themselves every year.
• 300,000 individuals with serious neurobiological disorders (NBD) are in jails and prisons
• Each year over 11 million days are spent by individuals with NBD in jail (does not include state or federal prisons)
• 200,000 individuals with serious neurobiological disorders are homeless
• 1,000 homicides a year are committed by people with serious mental illness
• While a variety of factors account for these facts, the question has to be asked, “would the lives of some people with neurobiological disorders (NBD) be improved if they had had access to some form of involuntary treatment and/or involuntary commitment?” Current involuntary commitment and/or involuntary commitment laws and policies in many places are inadequate in that they:
• (1) allow people who may not need involuntary commitment or involuntary treatment to be committed, and
• (2) deny some who may need access to involuntary treatment and/or involuntary commitment from receiving it.

In the past few years, there has been a trend towards changing involuntary treatment and/or involuntary commitment 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. Family members have grown increasingly disturbed that they have to wait until after their ill relative becomes ‘danger to self or others’ before they can get care. They believe laws should prevent dangerousness, not require it.

On the other hand, a well funded ‘mental health bar’ (lawyers who specialize in mental health from a civil liberties perspective) are working to preserve the status quo. These lawyers (many associated 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 individual’s health or life. Hence, the “expressed” wishes of a consumer (regardless of whether they have the cognitive 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. (Read: Uncivil Liberties, by Herschel Hardin)

But up until recently, it has been the mental health bar 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 cannot afford to hire the technical skills (lawyers, lobby, 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 and/or involuntary commitment decisions, the failure to address violence stymies progress.
• 3. Fear of engaging in ‘controversial’ issues: Just the use of the words “involuntary treatment and/or involuntary commitment” 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 and/or involuntary commitment.
• 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. You can do almost all this by reading the papers at mentalillnesspolicy.org and treatmentadvocacycenter.org

1. History of involuntary treatment and involuntary commitment laws

Before attempting to change the laws in your state you must get a good education on the history of involuntary treatment and involuntary commitment laws. There have been many court cases and laws passed which provide the framework within which you must operate. I cannot 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 on Amazon. This is a must-read that explains the issue of involuntary treatment and/or involuntary commitment 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 continually 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., formerly 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 states 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 cannot 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 him or her. 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 also what the courts have decided. You also have to know what policies your health care establishment has adopted in interpreting these laws. You do not have to be a lawyer to do this.

Your first stops should be: mentalillnesspolicy.org and treatmentadvocacycenter.org

After researching on line, you should talk to people. 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. Be sure to talk to patients and/or families who have been personally involved.

1. 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.

2. Ask your hospital administrator for a copy of their policies on involuntary treatment and/or involuntary commitment. 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.

3. Ask your state Department of Mental Health for a copy of all laws and policies they have on involuntary treatment and/or involuntary commitment. Again: ask them how they feel the law is working.

4. Ask your local American Psychiatric Association if they have a resident expert on these issues who you can talk to.

5. Ask your local American Bar Association if they have a subcommittee or expert on these issues whom you can talk to.

6. 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 and/or involuntary commitment. 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 and/or involuntary commitment 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 codebook it is important to look at the updates to make sure you have the most current information.

10. Reach out to police chiefs, sheriffs, district attorneys, prison officials and others. As the mental health system abandons treating people with serious mental illness, members of the criminal justice system have become front-line mental health workers and are very supportive of changing laws.

3. Research relevant to involuntary treatment and/or involuntary commitment

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 single book incorporating much of this information is the new edition of Surviving Schizophrenia, by Dr. E. Fuller Torrey. His books, Out of the Shadows, and The Insanity Offense are also excellent descriptions.

For insight/anosognosia, read: Dr. Xavier Amador

For compliance and the cost of noncompliance read Dr. Peter Weiden

For competency read Dr. Thomas Grisso

For misdiagnosis and using community treatment to cut down on the need for involuntary interventions, read Dr. Ron Diamond

The best online collection of the information is at mentalillnesspolicy.org

Who is mentally ill

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 mono-myopic ‘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. It is dishonest to use numbers that reflect ‘total mental illness’ in order to water down less than flattering realities. Read “Violent Fantasies” in National Review by DJ Jaffe and available at mentalillness.policy.orog

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:

1. * Medications suppress symptoms associated with disorders,
2. * 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.
3. * Known physical agents and drugs can produce some symptoms of mental disorders, demonstrating that biological factors can in fact be causative.
4. * Genetic studies show that the disorders are influenced by inheritance.
5. *Other areas of research provide evidence about correlated biological factors and suggest testable hypothesis as to causation.”
6. -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 and/or involuntary commitment 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 success 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 Grasso and Paul Applaud, 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.

The National Alliance on Mental Illness (NAMI) policy on involuntary and court ordered treatment (available at nami.org and on mentalillnesspolicy.org) is a great policy to use as a starting point and adopt for your state. Unfortunately, NAMI at the national level has done little to help states adopt the policy.

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.

Start by asking each of the following questions.

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 are 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 are 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 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 (Assisted Outpatient Treatment (AOT)’? For how long? Is the decision periodically reviewed? Will community providers accept individuals under outpatient commitment orders?

Following is evidence that outpatient treatment (the least expensive and restrictive form of treatment) does work: (More recent data is available on mentalillnesspolicy.org

“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. Outpatient 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 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 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.

Write a policy, circulate it widely, get feedback, and 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. (Ex. in Kendricks vs. Kansas, mental illness commitment law was recently modified to apply to aquittees with a ‘mental abnormality’, a distinction that did not previously exist) 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.

Some of the strongest proponents of change have been police associations, sheriffs groups, district attorneys and others who work in fields that bring them into contact with people with serious mental illness.

The Treatment Advocacy Center in Arlington, VA may be able to help you: treatmentadvocacycenter.org

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.

Help 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 and/or involuntary commitment.

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 use 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 propose your solution.

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 and/or involuntary commitment laws. Remember: Your reporter may not know that ‘mental’ illness is a physical illness.

Notes * In this paper, we will use the term “involuntary treatment and/or involuntary commitment”. However, many have suggested replacing the term with ‘substitute judgment’. What involuntary treatment and/or involuntary commitment involve 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 judgment 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.