A Policymaker's Guide to Mental Illness

Report Health Care Reform

A Policymaker's Guide to Mental Illness

March 7, 2002 About an hour read
Timothy Kelly

Mental illness is one of the most complex and frustrating health care issues facing policymakers today, and its toll is widespread. Tens of millions of Americans will experience depression, panic attacks, or some other form of mental illness this year. Of these, 5.6 million adults and 1.2 million children and adolescents will suffer from the most severe forms such as schizophrenia and bipolar (manic-depressive) disorder.1

Countless jobs will be lost and lives will be put on hold as individuals and their families struggle to cope with the chaos and heartbreak of mental illness. Some of those with mental illness will attempt suicide and, tragically, many of those attempts will be successful. In 1996, 500,000 Americans visited emergency rooms as a result of suicide attempts; 31,000 of those who attempted suicide died.2

America enjoys prosperity and power, but these have not provided a buffer from the plagues of mental illness and suicide. How did this come about? What can be done to address this critical problem? These are questions that many legislators and policymakers seek to answer in their roles of service to the American people.


Historically, mental illness has been feared and misunderstood, and those suffering from it have been stigmatized. In colonial America, people with mental illness were called "lunaticks" and were usually cared for at home by their families. Often, this meant consigning the suffering individual to a basement or attic for long periods of time. Treatment consisted of humane custodial care at best, quackery or cruelty at worst.

By the 19th century, asylums were built so that people with mental illness could be cared for away from their home community. The various treatments that were provided were largely ineffective. In some cases, they were administered by well-meaning staff who at least treated their patients with dignity; too often, however, they were dispensed by inappropriate staff who cruelly mistreated their patients.

In the early 20th century, asylums became "mental hospitals," and the numbers of Americans committed within their walls grew substantially, reaching a high of nearly 560,000 in 1955. This rise was driven, in part, by the large number of World War I and World War II veterans whose combat experiences triggered chronic mental illness. Approximately 90 percent of those hospitalized suffered from a psychotic disorder; they had lost touch with reality and, in many cases, experienced delusions and/or hallucinations.

In the mid-1950s, the discovery of antipsychotic medications such as chlorpromazine sparked a revolution in mental hospitals. These new medications controlled psychotic symptoms, and for the first time, people with schizophrenia and other psychotic disorders could be discharged and returned to their home communities. The census of mental hospitals began a dramatic drop in their rolls, which now stand at just over 55,000.

This movement away from hospital care became known as "deinstitutionalization," as hundreds of thousands of people who would otherwise have lived much of their lives in institutions were able to go home. The initial hope was that antipsychotic medication would do for mental illness what penicillin did for infections--provide a cure for most cases. Instead, the process of drug treatment and deinstitutionalization brought about new problems. The medications themselves turned out to be problematic because they sometimes triggered severe side effects, and deinstitutionalization gave rise to a critical need for treatment and support services in the home community.

In response to this dilemma, a complementary revolution in mental health care soon developed--the community mental health movement. The goal was to provide outpatient services so that people with mental illness could receive needed care in their home communities. Community mental health centers (CMHCs) were launched with federal funding in the 1960s, and there are many dedicated and talented providers offering excellent care in today's CMHCs. Unfortunately, however, the CMHC system is now functioning largely without evidence of treatment effectiveness--and often without the full range of community supports and services necessary to provide effective care. Consequently, it is not unusual for a person with mental illness to end up back on the street, receiving inadequate treatment in the community, after being discharged from a psychiatric hospital.

This situation contributes to a rising population of the "homeless mentally ill," and seems to provide evidence for the claim that deinstitutionalization has failed. In fact, both deinstitutionalization and community mental health care constitute good public policy if they are correctly implemented. What is lacking in the vast mental health service delivery system that has grown up over the past 40 years is competitive, results-oriented accountability.3


This year, over $69 billion will be spent on direct treatment for mental illness, yet many afflicted individuals will receive ineffective care--or no care.4 Consequently, there is a growing mental health care crisis in America today, and constituents are turning to policymakers for solutions. What is mental illness, and how can it best be treated? What are the most serious forms of mental illness? Can insurance parity, new Medicaid programs, or increased funding improve ineffective services? This paper is written to provide a starting point for policymakers facing these and related questions by offering the following:
  • A definition of mental illness, serious mental illness, and mental health problems;
  • A review of community resources that prevent mental illness;
  • An introduction to the major categories of serious mental illness;
  • An introduction to treatment for serious mental illness;
  • A recommendation for improving effectiveness of mental health services; and
  • A review of some current policy issues.


Mental illness is surprisingly difficult to define. Unlike physical illness, there is neither a pathogen that can be identified and treated nor a viral or bacterial infection that can be readily observed. The affected organ is, of course, the brain, and many mental illnesses are associated with changes in brain chemistry. But the etiology, or cause, of mental illness remains largely unknown.

Behavioral scientists work with a "biopsychosocial" model,5 which means that a given mental illness (such as depression) may have a biological component (such as a genetic neurological predisposition to depression); a psychological component (such as negative thought processes feeding depression); and/or a social component (such as a significant loss that triggers depression). The biopsychosocial model of mental illness has proven useful for research and treatment, and provides a good starting point for the policy arena as well.

Two Definitions of Mental Illness

The National Alliance for the Mentally Ill (NAMI), the nation's largest mental health advocacy organization, defines mental illness as a "disorder of the brain" that "disrupts a person's thinking, feeling, moods, and ability to relate to others...[and] often results in a diminished capacity for coping with the ordinary demands of life."6 NAMI works from the premise that most people with serious mental illness need medication and that recovery often requires counseling and community support services as well.

NAMI is involved in the policy arena at both the state and federal levels and is known for its focus on "serious mental illness" rather than milder forms. Targeting serious mental illness makes good sense, from both a clinical and a practical point of view. With limited resources, policymakers should address the needs of those who are most seriously ill on a priority basis.

The 1999 Surgeon General's Report on Mental Health defines mental illness as "diagnosable mental disorders...characterized by alterations in thinking, mood, or behavior...associated with distress and/or impaired functioning."7 In this definition, "diagnosable" is the operative word, and it is what distinguishes mental illness from other, less serious problems in dealing with the typical tasks of life.

Saying that mental illness is diagnosable means that its symptoms meet the criteria specified in the Diagnostic and Statistical Manual of Mental Disorders--Fourth Edition (DSM-IV). The DSM-IV, published by the American Psychiatric Association, lists observable/reportable criteria for every recognized classification of mental illness. For instance, to be diagnosed as suffering depression, an individual would have experienced for a period of time at least five of nine specific symptoms, including sad mood, sleep disturbance, low energy, difficulty concentrating, and thoughts of self-harm. Since public and private health insurers typically rely on DSM-IV diagnoses when considering coverage for mental illness, this manual has come to play a critical role in mental health care policy.

Drawing on a combination of these definitions, the following is a working definition of mental illness that could be used by policymakers: "Mental illness is a biopsychosocial brain disorder characterized by dysfunctional thoughts, feelings, and/or behaviors that meet DSM-IV diagnostic criteria."


Although the above definition provides a useful starting point for policymakers who are considering mental health matters, it is too broad in that it includes some types of mental illness that lie outside the realm of public policy and are best addressed by an individual's family and community. The DSM-IV definitions were not designed to identify the most critical health needs that should be prioritized by policymakers; rather, they were developed by mental health researchers whose goal was to provide distinct classifications for all experiences outside the "norm." Such deviations from the norm that are included in the DSM-IV range from simple cases of caffeine intoxication to life-threatening major depression.

Caffeine intoxication results from the ingestion of excessive amounts of caffeine, which results in symptoms such as restlessness, insomnia, and nervousness. Although many college students have experienced the results of a caffeine overdose while studying for exams, it is unlikely that this form of "mental illness" is serious enough to warrant treatment covered by public programs or private insurance.

Major depression, on the other hand, can be debilitating in the extreme and often includes suicidal thoughts or actions. Untreated, it can literally end in death. More often, it leads to a life of increasing dysfunction at home, at school, or in the work place. It is clear that this form of mental illness is serious enough to warrant treatment and that effective treatment should be made available either through private insurance or through the public mental health system.

Serious Mental Illness Defined

Mental health researchers and policymakers have labored for some time to define serious mental illness (SMI) in order to distinguish it from less severe forms of dysfunction. This definition is critical to ensuring that care is provided for the most serious and damaging cases of mental illness. Identifying and treating SMI is every bit as important as treating physical disabilities, such as loss of hearing. Private insurance and public funds should prioritize the needs of those with serious mental illness, whereas assistance from family, friends, and the community may be sufficient to address less severe forms of mental illness, such as bereavement or conduct disorder.

Although policymakers do not fully agree on which diagnostic classifications to designate as SMI, a working model could include the following categories:

  • All cases of schizophrenia (a psychotic disorder);
  • Severe cases of major depression and bipolar disorder (mood disorders);
  • Severe cases of panic disorder, obsessive-compulsive disorder, and post-traumatic stress disorder (anxiety disorders);
  • Severe cases of attention deficit/hyperactivity disorder (typically, a childhood disorder); and
  • Severe cases of anorexia nervosa (an eating disorder).

Accordingly, this paper defines SMI as a subcategory of mental illness, based on both diagnostic classification and severity.8 All those who suffer from SMI are indeed disabled and in need of effective treatment, whether they are children, adolescents, adults, or elderly people.9


Since severity is included in the definition of SMI, it is necessary to define what is meant by severe cases. For many diagnoses, including depression, the DSM-IV includes specifying the severity of a disorder as being mild, moderate, or severe. The DSM-IV defines "severe" as cases in which "many symptoms in excess of those required to make the diagnosis or several symptoms that are particularly severe are present, or the symptoms result in marked impairment in social or occupational functioning" (p. 2). In contrast, the DSM-IV defines as "mild" cases in which "few, if any, symptoms in excess of those required to make the diagnosis are present, and symptoms result in no more than minor impairment in social or occupational functioning" (p. 2).10 Additionally, the DSM-IV includes a "Global Assessment of Functioning Scale" for measuring severity on a scale of 0 to 100. Scores under 50 are considered serious.

Using this definition, a mild anxiety disorder would be minimally disruptive and would be seen as a mental health problem to be addressed with indigenous community resources. On the other hand, a severe anxiety disorder would be significantly disruptive and would constitute a serious mental illness requiring professional treatment. This same distinction applies throughout all SMI categories with the exception of schizophrenia, all cases of which are considered severe.


Although the needs of individuals with SMI should be prioritized, those who suffer less severe forms of mental illness can by no means be ignored. A compassionate society should assist all of those who are in need and should ensure timely treatment, which can prevent less severe mental health problems from developing into serious mental illness. Without social support, for example, an adult suffering bereavement could slip into a major depression. A child or adolescent exhibiting behavioral problems at school should receive attention and guidance. Likewise, a person dealing with a mild depression needs someone to offer support and a listening ear.

Such needs are best understood as mental health problems or mild mental illness, and they can often be addressed by family, friends, church or school counselors, employee assistance personnel, or the staff of a nonprofit organization. It would be a mistake for public/private insurers to consider such problems as being on the same level as SMI, thereby reducing the services that would be available for those with the greatest need. Indigenous community resources can prevent and address mental health problems by giving the sensitive, personal care and support that they, uniquely, can provide. This will allow public/private insurers to focus on addressing serious mental illness with well-funded effective treatments and high quality professional care.11


Needless to say, the most important community resource for dealing with mental health problems is one's own family and friends. A timely word of advice or encouragement, practical help with a problem, and the support of loved ones who believe in us and walk with us through hard times are priceless resources for dealing with the stress and normal difficulties of life, and this support helps to prevent the development of greater mental health problems.

In addition, other resources within the community play a valuable role in preventing and addressing mental health problems. These resources include:

  • Employers. Large organizations often offer employee assistance programs (EAPs) for their workers that provide resources for managing stress/anxiety such as gym privileges, yoga sessions, and support groups. Access to these supports, for example, could prevent an employee who is feeling "stressed out" from experiencing a debilitating panic attack. Since serious mental illness is costly to both the employee and the employer, it is good fiscal policy for companies to provide effective EAPs when possible.
  • Schools. Schools can provide timely evaluation and appropriate support for children whose conduct is problematic while emphasizing the importance of personal responsibility. Such support could be as simple as changing a child's classes to reduce academic or social frustration. It might also involve working with the child's parents to explore opportunities for tutoring, mentoring, or sports activities. With parental approval, support might also be provided through meetings with a school counselor or psychologist who could provide encouragement and guidance for dealing with stress or possibly arrange to have the child tested for attention deficit disorder. It is important to deal with such needs as soon as possible, given that today's frustrated student could become tomorrow's dropout with even greater problems such as depression or substance abuse.
  • Religious Institutions. Churches, synagogues, and mosques play a critical role in ministering to members who are struggling with mental health problems. Family members who are grieving over the loss of a loved one, older people who are experiencing isolation and mild depression, and couples having marital difficulties can all benefit from the support of their faith community. Many churches, for example, offer support groups and personal counseling for those in need, as well as 12-step programs, which have proven to be very effective in dealing with addictions. Such support provides important resources for men and women who are experiencing mental health problems, and it can help to avert the development of a major depression or other serious mental illness.
  • Nonprofit Community Organizations. Nonprofits such as the Boy Scouts and Girl Scouts, sports clubs, and other community-based organizations often play an important role in the lives of those who are dealing with mental health problems. For instance, in scouting, a boy or girl from a dysfunctional family may find the camaraderie and mentoring that is sorely lacking at home. This support and sense of belonging may help to keep these youths from self-destructive behaviors or depression.

In these and other ways, resources within communities can help to address the mental health problems of their residents and prevent mild problems from spiraling into serious mental illness. Although individuals whose community offers few or none of these resources are at greater risk than those who have strong community support, the family or community should not be blamed for the emergence of SMI. The biopsychosocial model indicates that mental illness is the result of a variety of factors. In light of etiological uncertainty, it is far more beneficial to focus on identifying and providing the things that can help those who are suffering mental problems than it is to cast blame.


As described above, SMI includes schizophrenia and severe cases of seven other mental disorders. Unfortunately, there is much confusion both about mental illness in general and about its specific disorders, as is indicated by such questions as "Is mental illness caused by poor parenting?" or "Can mental illness be 'caught' by spending time with a person suffering from SMI?"

The answer to both questions is "no." Although poor parenting can, of course, contribute to a child's problems, the biopsychosocial model is based on the premise that mental illness is caused by multiple factors. Many people from good families become mentally ill, and many of those from dysfunctional families do not. And, of course, since mental illness is not a type of virus or germ, it cannot be "caught."

Anyone experiencing SMI without the benefit of effective treatment can easily get to the point where he or she is simply unable to function in society. The sadness, anxiety, and uncontrollable behaviors that are part of serious mental illness--and, in the case of schizophrenia, the delusions and hallucinations--can become too much for a person to bear. However, when provided with proper treatment, the vast majority of people with serious mental illness can live normal, productive lives in their home communities. Effective care benefits not only the individual in need, but also the community, which otherwise would lose a valuable member.

A first step in providing effective care is to identify the characteristics of a serious mental illness and the treatment that is available. The following is a brief profile of each of the eight mental disorders identified as SMI. These are clustered into five categories of disorders in accord with the classifications of the DSM-IV.

I. Schizophrenia: A Psychotic Disorder

Schizophrenia is perhaps both the most debilitating and most misunderstood of the serious mental illnesses. The misuse of the term "schizophrenic" to apply to a Jekyll-and-Hyde syndrome adds to the confusion. Schizophrenia does not mean "split personality" or "multiple personality," although the term, coined by Swiss psychiatrist Eugene Bleuler in 1911, means "split mind." The "split" referenced by Bleuler is a division between experiences and feelings, or between thoughts and reality. People with schizophrenia may react in a bizarre manner to a normal social situation because their thoughts or feelings are not corresponding to what is actually happening around them. Individuals with schizophrenia are considered psychotic, meaning that they have lost touch with reality. They may see and hear things that are not there, or they may have bizarre delusions that seem absolutely real to them.

Schizophrenia strikes seemingly out of the blue, typically in late adolescence or early adulthood. It can afflict the best and brightest, and often lasts a lifetime. The tragedy of schizophrenia was well portrayed in A Beautiful Mind, a movie about the life of Nobel Prize winner John Nash, Jr. As demonstrated in Nash's case, some people are born with a genetic vulnerability to this disorder. (Nash's son also has schizophrenia.) Approximately 1 percent of the population (over 2 million) develops schizophrenia in their lifetime.12

There are five types of this disorder, but the most frequent and best-known is paranoid schizophrenia. This often involves unrelenting and extreme delusions of persecution or threat and the belief that others are "out to get you." A person who is actively experiencing paranoid schizophrenia is at risk of hurting himself or others if he does not receive treatment.

It is not possible to describe schizophrenia adequately without recognizing the heartbreak that this disorder entails. No amount of love or attention can reach individuals who are psychotic and bring them back to reality. They cannot be healed by the efforts of family members or friends, who often feel as though they have lost their loved one and are faced instead with a stranger who is undergoing terrible experiences.

The symptoms of schizophrenia vary greatly but can involve visual and/or auditory hallucinations that are often threatening and frightening in nature, such as hearing voices or even seeing demons. Bizarre delusions and peculiar behavior are common experiences of persons with schizophrenia who may believe, for example, that they are receiving messages from the dead.

The emotional response of a person with schizophrenia is often completely unrelated to their actual situation. For example, some may laugh after the death of a loved one, while others may have no feelings at all. Of course, these symptoms result in dramatic dysfunction at work, home, or school. The tragedy of this disorder is compounded by the fact that a person with schizophrenia may experience times of normalcy interspersed with periods of delusion or hallucination.

Treatment for schizophrenia relies heavily on "antipsychotic" medication that decreases the brain neurotransmitter dopamine. It is not clear whether a high dopamine level is causative or secondary, but targeting it usually decreases delusions and hallucinations to the point where a person with schizophrenia can again function at home and at work.

Fortunately, the newer antipsychotic medications such as Clozapine, Risperidone, and Olanzapine accomplish this with minimal side effects. In earlier times, a person with schizophrenia faced the difficult choice of continuing to endure the psychosis or possibly suffering devastating side effects from antipsychotic medications, such as tardive dyskinesia (repetitive actions that cannot be stopped). Today, once medication has taken effect, treatment often expands to include supportive therapy for the individual and his or her family, as well as vocational and psychosocial rehabilitation.

Many of those who face a lifetime struggle with schizophrenia come to the point where they no longer want to take the medication necessary to avoid psychotic symptoms. This is understandable; given that all medication takes its toll, it is natural for them to hope that the medication may no longer be needed. Tragically, this decision is usually disastrous, just as a diabetic's decision to stop insulin treatment would be.

For this reason, there is ongoing discussion as to whether or not there should be some way to ensure that those needing antipsychotic medication remain in treatment. One proposal to this end is for "outpatient commitment," whereby a person would be released from inpatient care contingent on his agreement to remain in treatment (for example, on medication) in his home community. Such an alternative would require significant reviews and safeguards to ensure that it is not misused. Although some may view such monitoring as intrusive, it may be the best way to avoid the devastating consequences that could occur if a person with schizophrenia were to cease treatment and perhaps end up hurting himself or a loved one.

II. Severe Major Depression and Severe Bipolar Disorder: Mood Disorders

"Mood disorder" is the term used in the DSM-IV for mental disorders characterized by either depression or mania. Major depression and bipolar (manic-depressive) disorder involve much more than simple mood swings from sadness to elation, which are considered normal.
Severe Major Depression
Major depression is one of the most common mental health diagnoses and ranks among the top 10 causes of worldwide disability.13 Severe major depression affects approximately 1.1 percent of adults (2.2 million) and approximately 1.2 percent of children and adolescents (432,000).

A person with depression experiences, for a sustained period, symptoms such as sad mood/crying, sleep disturbance, loss of energy and interest, loss of appetite, difficulty concentrating, and thoughts of self-harm. Depression can be triggered by a "psychosocial stressor" such as a loss (for example, the end of a relationship or loss of a job), which constitutes the social component in the biopsychosocial model. In addition, depression often involves changes in brain chemistry (a biological component) and negative thought patterns (a psychological component).

The difference between diagnosable depression and "feeling down" is a matter of severity, duration, and impairment. Anyone can feel down for a day or so, but depression can last weeks or months, can immobilize a person, and can lead to suicide. Tragically, from 10 percent to 15 percent of those hospitalized for depression subsequently commit suicide.14

Depression can be effectively treated with psychotherapy, antidepressants, or a combination of both. There are four major classes of antidepressants, but the most frequently used are known as the SSRI antidepressants, which include Prozac and Zoloft. The primary function of these medications is to increase the active amount of a brain neurotransmitter, serotonin, which in turn elevates an individual's mood. With fewer side effects and greater effectiveness than the older antidepressants, these medications have become common and are currently taken by tens of millions of Americans. Interestingly, most of the prescriptions for antidepressants are written by general practitioners rather than by psychiatrists.

Several mainstream psychotherapies have also been shown to be effective in treating depression. Of these, cognitive-behavioral psychotherapy (which deals with negative thought patterns) and interpersonal psychotherapy (which focuses on relationships) have been shown to be particularly effective. In many cases, a combination of psychotherapy and medication constitutes the most effective treatment approach.

Severe Bipolar Disorder
Bipolar disorder, formerly called manic-depressive disorder, involves experiencing a manic episode--an abnormally elevated, expansive, or irritable mood. This manic mood is accompanied by symptoms that could include grandiosity, decreased need for sleep, flight of ideas, pressured speech, and, in some cases, self-destructive activities such as sexual indiscretion or buying sprees. Extreme cases can include psychosis--that is, auditory and visual hallucinations, or delusions.

As with depression, a manic episode can be triggered by a psychosocial stressor. The mania can last for a period of a few weeks to several months and often either follows or precedes a depressive episode. The cycle from depression to mania and back can occur annually or more frequently.

Approximately 1 percent of adults (2 million) and 1.2 percent of children and adolescents (432,000) suffer from severe bipolar disorder.15 Untreated, this disorder can quickly ruin lives as a person experiencing mania proceeds to devastate his family, property, employment, and ultimately himself through surprisingly self-destructive behaviors, including suicide.

Treatment for bipolar disorder usually requires medication to stabilize the manic mood swings. Throughout the years, lithium has been the most frequently prescribed and most effective medication for this disorder, with few side effects. Recently, new medications that were originally developed as anticonvulsants--Tegretol and Depakote--have been found to be particularly effective in treating bipolar disorder, especially for those who do not respond to lithium.

It is not unusual for a person with severe bipolar disorder to be taking a number of medications--for example, one for mania, another for depression, and perhaps a third to control side effects from the first two. Supportive, practical psychotherapy can also help a person suffering from this disorder to cope and to learn skills for managing bipolar experiences.

III. Severe Panic Attacks, Severe Obsessive-Compulsive Disorder, and Severe Post-Traumatic Stress Disorder: Anxiety Disorders

Anxiety disorders involve extreme or pathological anxiety that can debilitate an individual. These disorders are very different from experiencing fear in the face of some danger, worrying about life's concerns, or feeling stress under pressure--all of which are normal. A severe anxiety disorder can lead to wild panic, bizarre obsessive-compulsive behaviors (for example, washing one's hands every hour or constantly checking locked doors), or terrifying re-experiences of a trauma such as rape.

Severe Panic Attacks
Panic attacks usually involve a gut-wrenching, overwhelming sense of fear, often including the belief that one is "going crazy" or about to die. Accompanying this fear are symptoms that may include a racing heart rate, sweating and trembling, shortness of breath, or hot flashes. The attack usually comes on suddenly and builds to a crescendo within 10 to 15 minutes. By then, it is not unusual for the person who is having the attack to lose control (for example, to run out of a building, scream, or cry hysterically).

Panic attacks are associated with other anxiety disorders such as phobias (an inordinate fear of an object or situation) and agoraphobia (fear of being trapped somewhere while experiencing a panic attack). Needless to say, these attacks and the behaviors they elicit can be highly disruptive at home, at school, or on the job. Currently, approximately 0.4 percent of adults (800,000) and 0.3 percent of children and adolescents (108,000) experience severe panic attacks and their associated disorders.

Severe Obsessive-Compulsive Disorder
Obsessive-compulsive disorder (OCD) consists of two components: obsessive thoughts and compulsive behaviors. An obsessive thought is an abhorrent thought, image, or impulse that invades a person's consciousness and cannot be "turned off." A compulsive behavior is a repetitive, unwanted action that cannot be resisted. The two usually go hand in hand. For instance, Howard Hughes, who suffered from obsessive-compulsive disorder during the last half of his life, was irrationally concerned about germs. He could not stop thinking about infection, so he developed elaborate and bizarre routines--such as opening doors with feet--to avoid germs.

Severe OCD, untreated, can be completely debilitating as an individual spends all his time in compulsive, bizarre behavior. Currently, approximately 0.6 percent of adults (1.2 million) and 0.6 percent of children and adolescents (216,000) experience severe OCD.16

Severe Post-Traumatic Stress Disorder
Post-traumatic stress disorder (PTSD) was officially recognized as a disorder in 1980, largely in response to Vietnam War veterans who were experiencing troubling symptoms. Formerly, similar symptoms that afflicted World War II veterans were diagnosed as "combat fatigue" and, earlier, were known as "shell shock" with regard to World War I veterans. But PTSD is not limited to war trauma. It can be caused by exposure to any horrifying, traumatic stressor, including combat, violent assault (including rape), kidnapping, torture, a severe auto accident, or a severe natural disaster. Symptoms include re-experiencing the trauma (sometimes many years after its original occurrence) in nightmares or flashbacks.

Because these experiences are often triggered by something reminiscent of the initial event, people with PTSD may go to great lengths to avoid places or reminders of their trauma. If, despite their best efforts, the trauma is invoked, they may suddenly and unexpectedly re-experience the full anxiety and horror of the original event with a flashback. Such experiences can be truly debilitating and unnerving.

This disorder is somewhat unique in that its cause is known. What is not known is why some individuals develop PTSD while others who experienced similar (or the same) trauma do not. One study found that 36 percent of Vietnam War veterans exposed to high war-zone stressors suffered from PTSD. Another study found that both rape and molestation are associated with high probabilities of PTSD.17

Treatment for anxiety disorders often involves both medication and psychotherapy. The SSRI antidepressants have proved to be helpful for both OCD and panic attacks. Panic attacks are also treated with antianxiety medication known as benzodiazepines (for example, Klonopin and Valium), though these can become addictive. Recently, a newer medication, Buspar, has become available as a non-addictive alternative for reducing general anxiety.

Many people who are dealing with a severe anxiety disorder benefit not only from medication, but also from psychotherapy. Psychotherapy may be supportive and practical, focusing on strategies for managing anxiety such as relaxation techniques; it may be cognitive-behavioral, focusing on anxious thought patterns; or it may be insight-oriented, helping an individual to work through his feelings and defuse the impact of the initial trauma. Although these disorders rarely remit altogether, with effective treatment, those suffering from severe anxiety disorders can usually minimize symptoms and return to a fully functioning lifestyle.

IV. Severe Attention Deficit/Hyperactivity Disorder: Typically, a Childhood Disorder

Attention Deficit/Hyperactivity Disorder (ADHD) is the most commonly diagnosed behavioral disorder of childhood, although it can also be found among adults. Statistics from clinics indicate that it is nine times more common among boys than among girls, and it has generated a great deal of controversy--especially among parents who feel that the diagnosis and medication are too readily given to disruptive children.

There is, in fact, enough evidence to warrant more research on whether the diagnosis is indeed given too often to children who meet only some of the actual criteria for ADHD in an effort, perhaps, to control poor behavior. Mild ADHD symptoms may often be dealt with best through parental/teacher attention and special tutoring or mentoring rather than with medication.

Severe ADHD, however, involves measurable dysfunction in the brain's ability to process information. Some children are prone to disruptive behavior or inattention. Children suffering from severe ADHD are simply unable to perform at home or at school and are very much in need of effective treatment. According to the nation's largest ADHD organization, ADHD affects 3 percent to 5 percent of children and adolescents and 2 percent to 4 percent of adults18 (although this estimate is for all cases of ADHD, not just "severe" cases).

While children tend to be the subject of most of the discussion about ADHD, it is important to recognize that the malady also affects many adults, who often suffer more damaging effects than children do. Adults with ADHD, for instance, may have great trouble holding down a job or managing their finances. Forming and maintaining relationships can also be much more difficult, leading to increased stress in their lives. Adolescents and adults with ADHD that is not adequately treated are also at an increased risk of substance abuse and impulsivity, which have often resulted in the tragedies of automobile accidents and acts of violence.

ADHD is characterized by two sets of symptoms: inattention and hyperactivity. Although any child can, of course, be inattentive and hyperactive at times--especially when upset--the cluster of symptoms for ADHD go far beyond the normal range of behavior. For example, a child with severe ADHD will typically:

  • Make careless mistakes at school and at home despite good effort;
  • Be unable to sustain attention in activities even when trying to focus;
  • Not follow through on instructions or schoolwork even when intending to do so;
  • Have great difficulty organizing tasks and activities;
  • Often lose things, especially those necessary for task completion, despite best efforts;
  • Be easily distracted;
  • Be forgetful in daily activities;
  • Fidget and squirm when seated;
  • Be always on the go, as if driven by a motor; and
  • Talk excessively.

Whereas a few of these behaviors are to be expected from any child now and again, it is the sum of all these behaviors exhibited most of the time that marks severe ADHD.

Treatment for severe ADHD usually involves both medication and behavioral therapy. The medications--"psychostimulants" including Ritalin and Adderall--arouse or stimulate brain regions that are responsible for directing attention and inhibiting impulses.

While it may seem counterintuitive that an energizing medication would help to treat a hyperactive disorder, the results have clearly been positive. At least 75 percent of children with ADHD respond well to psychostimulants. The actual mechanism of improvement is not known, but it has been hypothesized that a stimulant may improve the ability of a child with ADHD to focus more effectively on one thing at a time by "arousing" his interest level.

Behavioral therapy is often required as a complement to medication in order to help parents and teachers establish structure in the childís life and reinforce consequences for actions. Otherwise, dysfunctional learned behaviors (bad habits) can deter improvement, even after successful medication.

V. Severe Anorexia Nervosa: Eating Disorder

Anorexia nervosa is an eating disorder characterized by refusal to eat what is required to maintain a minimally normal body weight. The person suffering from this disorder is inordinately afraid of gaining weight and exhibits a significant disturbance in perception of the shape or size of the body. For instance, an individual may be emaciated yet see an overweight body in the mirror.

Anorexic females, who account for more than 90 percent of all cases, are amenorrheic. Anorexia nervosa is a potentially life-threatening disorder, since people who experience it are in jeopardy of literally starving themselves to death. There is also a likelihood that they could die from suicide or from starvation complications such as electrolyte imbalance. Tragically, the long-term mortality among those entering university hospitals for anorexia is over 10 percent.

Treatment for anorexia nervosa can involve medication and/or psychotherapy. There is an indication that antidepressants may help with this disorder--perhaps suggesting that, in some cases, depression accompanies anorexia. It has also been found that a person struggling with anorexia benefits from psychotherapy, especially given the "therapeutic relationship" wherein a caring professional helps monitor and work against starvation. Unfortunately, this disorder has proven to be particularly difficult to treat effectively. Many who suffer from it go from treatment to treatment but never fully recover.


People who are struggling with serious mental illness should be able to access effective care, through either private insurance or public support, and many individuals are able to do so. However, many others receive care that is far from effective and spend their lives endlessly cycling in and out of mental health services that miss their mark.

A significant portion of the "homeless mentally ill" are persons who have been hospitalized and then discharged without adequate follow-up care. They end up back on the street until their condition deteriorates to the level where they once again meet the criteria for hospitalization. The fact that thousands of men and women are trapped in this continuing cycle is one indicator of the need for reform in the nation's mental health system. The pressing question is where to begin.

Measure Results

Although the improvements needed in mental health services are multiple and complex, there is one certain simple step toward needed reforms: Focus on results. Measurement and evaluation is a proven impetus for improved performance.

Currently, it is difficult to determine to what extent a given treatment has been effective for a specific person receiving care. Most mental health management information systems in the public and private sectors simply list demographics and services provided. Rather than documenting process, a valuable evaluation should measure progress--the actual outcomes of care provided. Many instruments, such as questionnaires, are already available for such purposes, and recent developments in software can facilitate the retrieval and interpretation of the information that is gathered.

Outcome-based evaluation should be conducted not to punish programs that have minimal impact, but to identify and promote the treatments that work and improve those that do not. It is not compassionate to fund failure, especially when so much is at stake.

The regular use of standardized outcome measures would help transform mental health services into an evidence-based practice, improve the overall quality of care, and ensure that more people with serious mental illness are able to resume their lives in their home communities. Some states have begun to move in this direction, but a nationally coordinated effort could do much to establish the standardization in measurement that is necessary to use data effectively. Ultimately, such evaluation would require coordination and leadership at both the state and federal levels, since it would be implemented with regard to both state and federal mental health agencies.

Other Avenues of Reform

Beyond measuring results, policymakers are considering several other initiatives to improve the effectiveness of mental health services. Though these issues involve some thorny questions for which there are no easy answers, the following proposals offer significant prospects for improving and extending mental health care.

  • Provide parity insurance coverage for mental health. The concept of providing an equal amount of coverage for mental illness and physical illness is called "parity." This is an issue that has been debated for some time at both the state and federal levels.

    Recently, a congressional proposal for greater mental health parity was defeated because it applied to all DSM-IV classifications.19 If, instead, the parity proposal were to be tightened to target serious mental illness, it would win more advocates. A person suffering from a serious mental illness may be as debilitated as someone with a serious physical illness, and both should have adequate coverage and access to care. In contrast, the extension of parity to all DSM-IV categories of mental disorders could entail staggering expenses and could force taxpayers and employers to pick up the tab for treatments for problems as simple as caffeine intoxication or misbehavior.

    While extreme cases may be easy to decide, the challenge is to draw the boundary between the types of mental illness that should be covered with public or private insurance and those that should be addressed using indigenous community resources as listed above. This is extremely difficult, since each case has a human face and affects a network of people.

  • Establish outpatient commitment for mental illness. An individual is committed to "inpatient care" if, on the basis of an evaluation, a court determines that a person with SMI is at risk of hurting himself or others. The individual is then committed to psychiatric hospitalization for treatment and stabilization. For the safety and well-being of the individual and the community, it is deemed necessary to temporarily suspend that person's right to refuse treatment. However, once a person has been successfully treated and is discharged from a psychiatric hospital, the court has no say regarding whether or not he or she continues to receive treatment. In most cases of relapse after discharge, the cessation of treatment, especially of medications, is the primary cause.

    Outpatient commitment has been proposed to address this problem. Under this proposal, hospitalized SMI patients could be given the opportunity for early discharge contingent on an agreement to remain in treatment in their home community. If they did not abide by this agreement, they could be re-hospitalized, or required to attend a day treatment program, etc., for treatment stabilization. A new commitment hearing would not be required. The agreement to remain in treatment and the possibility otherwise of re-hospitalization (or day treatment, etc.) together constitute "outpatient commitment."

    There are strong views on both side of this issue. Some advocacy groups argue that outpatient commitment infringes on the civil rights of individuals. Yet many family members of people with SMI feel that outpatient commitment could provide the tools needed to keep their loved ones from hurting themselves or others. In any event, such authority should be used only when absolutely necessary and only when it is clearly in the best interest of the person receiving care. Any proposal for outpatient commitment should include considerable safeguards such as review and appeals processes, and outpatient commitment should be considered as an option only in communities that have adequate resources to provide the full array of care that is necessary for success.

    Ideally, a time may come when neither inpatient nor outpatient commitment will be necessary because of the effectiveness of prevention and treatment services for mental illness. In such a situation, peopleís needs would be addressed successfully before they deteriorated to the point of danger to themselves or others. Until that time, however, commitment remains a necessary component of the mental health service system.

    Consideration should also be given to related innovative ideas such as "advance directives," wherein persons with mental illness stipulate beforehand who may make treatment decisions on their behalf--and what treatments would be preferred--if ever they become unable to care for themselves.

  • Require parental approval for child and adolescent mental health treatment. Today's children and adolescents face considerable stress from school and home, and too many of them experience serious mental illness.20 Yet parents and local authorities do not always agree on how to respond. If an adolescent is suffering from, say, anorexia nervosa, and the parents are not interested in treatment, what should be done? For the sake of a child's well-being, should a school system be allowed to engage a child in counseling services regardless of a lack of parental consent? Or is this a violation of parental rights, especially since the action itself--if not the counsel given--could undermine the parents' authority and values?

    A means must be designed through which parental rights and authority would be safeguarded while ensuring that children and adolescents who are suffering from SMI receive adequate care. Accomplishing this balance will be a challenging task.

  • Engage those who use mental health services in the process of reform. Over the past two decades, increasing numbers of people with serious mental illness have begun to speak out against the "broken" mental health system and advocate for improvements. They are calling for reform, and their voices should be heard.

    Just as the parents of children in failing schools provide impetus for education reform, so mental health consumers provide a powerful impetus for reforming mental health services. Nobody knows the need for effective treatment more that those who have suffered from ineffective care. Consequently, any effort to move ahead with results-oriented reform must include substantial, ongoing input from those who will benefit the most--the "consumers" of mental health services.


Some legislators facing mental health care issues for the first time may feel the subject matter is so elusive that sound, data-based public policy decisions are simply not feasible. Many avoid dealing with mental health issues altogether and instead stick to subjects that are closer at hand and about which more is known. Often it is only those legislators who have seen a loved one struggle with serious mental illness that have the courage and inclination to address these matters.

However, this paper demonstrates that it is possible to develop an understanding of mental illness, its treatments, and related policy implications, as well as strategies for improving care. The goal is for such understanding to spark a much-needed national dialogue on reforming mental health services so that persons with serious mental illness may eventually be provided effective care that allows then to live and work successfully in their home communities.

As a first step it is possible to identify a selection of disorders as the most serious of the mental illnesses, which should be considered as a priority in the policy arena. Although the boundaries of the SMI category may be debatable, the value of identifying the most severe mental illnesses is indisputable, since it allows policymakers to focus on the people who need help the most and on the disorders that should be dealt with on a priority basis.

It is unrealistic and mistaken to assume that all DSM-IV disorders are of equal urgency. Some mental illnesses are truly debilitating and life threatening; others are fairly mild and transient. To put schizophrenia and caffeine intoxication in the same category would be akin to putting cancer and a splinter in the same category. This paper is intended to provide a starting point for moving ahead on mental health policy issues and resolving the differences between those who want to prioritize the most serious mental diseases and those who would treat all mental illnesses on an equal basis.

It is uncontestable that these matters must be addressed. Too many Americans who are suffering from serious mental illness either are not receiving care or are receiving ineffective care. The resultant toll on individuals and society is staggering. Children with untreated severe ADHD not only stumble in school, but also can fall into impulsive behaviors such as reckless driving or spontaneous criminal acts--behaviors that can cripple or end a life. Over 30,000 Americans--many of them suffering from SMI and disheartened by ineffective treatments--take their own lives each year. Many of the "homeless mentally ill" could, with effective treatment, rejoin their community as productive members rather than living a short and brutish life on the street. And recent reports have found that 16 percent of the prison population suffers from serious mental illnesses that often go unrecognized and untreated, impeding rehabilitation.21

Taken together, the human and economic toll from mental illness is beyond calculation. But one thing is clear: Offering effective treatment to persons with SMI is not only the compassionate thing to do; it is also the smart thing to do from a socioeconomic point of view. It is good for the person, good for the nation, and good public policy. May national dialogue on mental health reform begin.

Timothy A. Kelly, Ph.D., a licensed clinical psychologist, is a Visiting Research Fellow at the George Mason University Institute of Public Policy and formerly served as the Commissioner of Virginia's Department of Mental Health, Mental Retardation, and Substance Abuse Services.

Web Resources for SMI

  1. National Institute of Mental Health (NIMH) : NIMH provides national leadership dedicated to understanding, treating, and preventing mental illnesses through basic research on the brain and behavior, and through clinical, epidemiological, and services research. Its stated mission is "To understand mind, brain, and behavior, and thereby to reduce the burden of mental illness through research." See www.nimh.nih.org.
  2. National Alliance for the Mentally Ill (NAMI) : NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. Working on the national, state, and local levels, NAMI provides education about severe brain disorders, supports increased funding for research, and advocates for adequate health insurance, housing, rehabilitation, and jobs for people with serious psychiatric illnesses. Consumers, family members, friends, and the public are encouraged to call the toll-free NAMI HelpLine for additional information and referral to the NAMI affiliate group in their area. The NAMI HelpLine is staffed by trained volunteers Monday through Friday, 10:00 a.m. to 5:00 p.m. (Eastern time), and has a 24-hour, seven-days-a-week message line. The HelpLine number is 1-800-950-NAMI [6264]. See www.nami.org.
  3. National Mental Health Association (NMHA) : NMHA is the country's oldest and largest nonprofit organization addressing all aspects of mental health and mental illness. With more than 340 affiliates nationwide, NMHA works to improve the mental health of all Americans, especially the 54 million individuals with mental disorders, through advocacy, education, research and service. See www.nmha.org.
  4. National Alliance for Research on Schizophrenia and Depression (NARSAD) : NARSAD was incorporated in 1986 through the combined efforts of the National Alliance for the Mentally Ill, the National Mental Health Association, the National Depressive and Manic Depressive Association, and the Schizophrenia Foundation. Recognizing the need for intensive research on the serious psychiatric disorders, concerned family members, citizens' groups, and medical professionals joined to form NARSAD. NARSAD is the largest non-government, donor-supported organization that distributes funds for brain disorder research. See www.mhsource.com/narsad.
  5. Mental Health Network : In September 1995, CMHC Systems chief John Paton invited psychologist John Grohol, Psy.D., to develop a Web site on the topic of mental health as a free service to the worldwide mental health community of professionals and lay people. Officially launched in November 1995, Mental Help Net has since gone on to become one of the premier mental health sites on the Web today. See www.mentalhealth.net.
  6. Obsessive-Compulsive Foundation: This foundation provides referrals to both treatment centers and mental health professionals, and helps coordinate support groups at the community level throughout the world. Public education is conducted by the distribution of literature, lectures, and presentations. The Web site contains information about OCD, trichotillomania, and the incidence of OCD among children. See www.ocfoundation.org.
  7. Children and Adults with Attention Deficit Disorder : This is the nation's largest ADD organization. Its Web site contains great information on ADD and is updated frequently. It also is unique in providing information about disability issues in the legislature. It is a great resource for those interested in policy. See www.chadd.org.
  8. American Anorexia/Bulimia Association, Inc. (AA/BA) : AA/BA provides information to sufferers, their families, and friends about effective treatments. This information includes general information on eating disorders, information for those who suffer from eating disorders, family and friends of sufferers, and professionals. These essays are informative and easy to understand. See www.aabainc.org.
  9. The Center for Mental Health Services (CMHS)--Knowledge Exchange Network : The CMHS provides a good governmental resource for information on mental health services and policies. It is part of the U.S. Department of Health and Human Service's Substance Abuse and Mental Health Services Administration (SAMHSA), the primary federal mental health agency. See www.mentalhealth.org.
  10. The National Depressive and Manic-Depressive Association (NDMDA) : The mission of the NDMDA is to educate patients, families, professionals and the public concerning the nature of depressive and manic-depressive illnesses as treatable medical diseases; to foster self-help for patients and their families; to eliminate discrimination and stigma; to improve access to care; and to advocate for research toward the elimination of these illnesses. See www.ndmda.org.

1. "Health Care Reform for Americans with Severe Mental Illnesses: Report of the National Advisory Mental Health Council," American Journal of Psychiatry, Vol. 150 (1993), pp. 1447-1465.

2. U.S. Department of Health and Human Services (HHS), Mental Health: A Report of the Surgeon General, 1999, p. 245.

3. Timothy A. Kelly, Ph.D., "Principled Mental Health System Reform," Heritage Foundation Backgrounder No. 1341, January 7, 2000.

4. HHS, Mental Health: A Report of the Surgeon General , p. 49.

5. G. L. Engel, "The Need for a New Medical Model: A Challenge for Biomedicine," Science , Vol. 196 (1977), pp. 129-136.

6. See National Alliance for the Mentally Ill Web page, at www.nami.org.

7. HHS, Mental Health: A Report of the Surgeon General , p. 5.

8. Note that this definition assumes an objective approach to measuring/defining severity of mental disorders (other than schizophrenia). Those with mild cases would be considered to have mental health problems rather than SMI.

9. Children and adolescents struggling with serious mental illness are sometimes classified as "Seriously Emotionally Disturbed" (SED).

10. Note that the DSM-IV defines "moderate" as "between mild and severe"--a fairly pointless distinction.

11. What about people struggling with autism, mental retardation, or dementia (such as Alzheimer's)? These needs are best addressed in the context of long-term-care support services, as opposed to SMI services. What about those struggling with addictions, such as drugs and alcohol? People suffering from addictions demonstrate a high rate of "comorbidity," meaning that it is not unusual for them to also meet criteria for serious mental illness. Thus, addiction is often a secondary issue that must be addressed as one component of mental health treatment, but the primary focus for SMI remains the disorders listed above. The same could be said for other disorders not listed, such as attention deficit disorder, eating disorders, elimination disorders, tic disorders, and impulse disorders. Severe cases have a high rate of comorbidity.

12. I. I. Gottesman, Schizophrenia Genesis--The Origins of Madness (New York: W. H. Freeman, 1991).

13. C. J. Murray, and A. D. Lopez, "Evidence-Based Health Policy--Lessons from the Global Burden of Disease Study," Science , Vol. 274 (1996), pp. 740-743.

14. J. Angst, F. Angst, and H. H. Stassen, "Suicide Risks in Patients with Major Depressive Disorder," Journal of Clinical Psychiatry , Vol. 60, Suppl. 2 (1999), pp. 57-62.

15. "Health Care Reform for Americans with Severe Mental Illnesses: Report of the National Advisory Mental Health Council."

16. Ibid .

17. R. C. Kessler et al., "Posttraumatic Stress Disorder in the National Comorbidity Survey," Archives of General Psychiatry , Vol. 52 (1995), pp. 1048-1060.

18. See Children and Adults with Attention Deficit Disorder Web page, at www.chadd.org.

19. The Mental Health Equitable Treatment Act of 2001 (S.543) sponsored by Senator Pete Domenici (R-NM).

20. See footnote 8.

21. P. Ditton, Mental Health and Treatment of Inmates and Probationers, U.S. Department of Justice, Bureau of Justice Statistics, NCJ-174463, 1999.


Timothy Kelly