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Thanks to everyone for the articles. I got several suggestions of pieces of the Surgeons Generals report so have tried to edit out overlap and keep the volume down.

The articles will also be posted on the PAN website

https://www.angelfire.com/ult/pan/

Time: 7pm to 10pm - ish

Bring drinks and snacks to share

General:

The articles are the basis for the discussion and reading them helps give us some common ground and focus for the discussion, especially where we would otherwise be ignorant of the issues. The discussions are not intended as debates or arguments, rather they should be a chance to explore ideas and issues in a constructive forum. Feel free to bring along other stuff you've read on this, related subjects or on topics the group might be interested in for future meetings.

GROUND RULES:

* Temper the urge to speak with the discipline to listen and leave space for others

* Balance the desire to teach with a passion to learn

* Hear what is said and listen for what is meant

* Marry your certainties with others' possibilities

* Reserve judgment until you can claim the understanding we seek

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847-985-7313

tysoe2@yahoo.com

The Articles:

These are also posted on the PAN website https://www.angelfire.com/ult/pan/

In recent years, there's been a dramatic increase in the number of children being diagnosed with serious psychiatric disorders and prescribed medications that are just beginning to be tested in children. The drugs can cause serious side effects, and virtually nothing is known about their long-term impact. "It's really to some extent an experiment, trying medications in these children of this age," child psychiatrist Dr. Patrick Bacon tells FRONTLINE. "It's a gamble. And I tell parents there's no way to know what's going to work."

In The Medicated Child, FRONTLINE producer Marcela Gaviria confronts psychiatrists, researchers and government regulators about the risks, benefits and many questions surrounding prescription drugs for troubled children. The biggest current controversy surrounds the diagnosis of bipolar disorder. Formerly called manic depression, bipolar disorder was long believed to exist only in adults. But in the mid-1990s, bipolar in children began to be diagnosed at much higher rates, sometimes in kids as young as 4 years old. "The rates of bipolar diagnoses in children have increased markedly in many communities over the last five to seven years," says Dr. Steven Hyman, a former director of the National Institute of Mental Health. "I think the real question is, are those diagnoses right? And in truth, I don't think we yet know the answer."

Like many of the 1 million children now diagnosed with bipolar, 5-year-old Jacob

Solomon was initially believed to suffer from an attention deficit disorder. His parents reluctantly started him on Ritalin, but over the next five years, Jacob would be put on one drug after another. "It all started to feel out of control," Jacob's father, Ron, told FRONTLINE. "Nobody ever said we can work with this through therapy and things like that. Everywhere we looked it was, 'Take meds, take meds, take meds.'" Over the years, Jacob's multiple medications have helped improve his mood, but they've also left him with a severe tic in his neck which doctors are having trouble fully explaining. "We're dealing with developing minds and brains, and medications have a whole different impact in the young developing child than they do in an adult," says Dr. Marianne Wamboldt, the chief of psychiatry at Denver Children's Hospital. "We don't understand that impact very well. That's where we're still in the Dark Ages." DJ Koontz was diagnosed with bipolar at 4 years old, after his temper tantrums became more frequent and explosive. He was recently prescribed powerful antipsychotic drugs.

"It is a little worrisome to me because he is so young," says DJ's mother, Christine. "If he didn't take it, though, I don't know if we could function as a family. It's almost a do-or-die situation over here." DJ's medicines seem to be helping him in the short run, but the longer-term outlook is still uncertain. "What's not really clear is whether many of the kids who are called bipolar have anything that's related to this very well-studied disorder in adults," says Dr. Thomas Insel, the director of the National Institute of Mental Health. "It's not clear that people with that adult illness started with what we're now calling

bipolar in children. Nor is it clear that the kids who have this disorder are going to grow up to have what we used to call manic-depressive illness in adulthood."

While some urge caution when it comes to bipolar in children, FRONTLINE talks with others who argue that we should intervene with drug treatments at even younger ages for children genetically predisposed to the disorder. "The theory is that if you get in early, before the first full mood episode, then perhaps we can delay the onset to full mania," says Dr. Kiki Chang of Stanford University. "And if that's the case, perhaps finding the right medication early on can protect a brain so that these children never do progress to full bipolar

when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any

In February 2001, President George W. Bush announced his New Freedom Initiative to promote increased access to educational and employment opportunities for people with disabilities. The Initiative also promotes increased access to assistive and universally designed technologies and full access to community life. Not since the Americans with Disabilities Act (ADA) - the landmark legislation providing protections against discrimination - and the Supreme Court's Olmstead v. L.C. decision, which affirmed the right to live in community settings, has there been cause for such promise and opportunity for full community participation for all people with disabilities, including those with psychiatric disabilities. On April 29, 2002, the President identified three obstacles preventing Americans with mental illnesses from getting the excellent care they deserve:

? Unfair treatment limitations and financial requirements placed on mental health benefits in private health insurance, and

The President's New Freedom Commission on Mental Health (called the Commission in this report) is a key component of the New Freedom Initiative. The President launched the Commission to address the problems in the current mental health service delivery system that allow Americans to fall through the system's cracks. In his charge to the Commission, the President directed its members to study the problems and gaps in the mental health system and make concrete recommendations for immediate improvements that the Federal government, State governments, local agencies, as well as public and private health care providers, can implement. Executive Order 13263 detailed the instructions

to the Commission. The Commission's findings confirm that there are unmet needs and that many barriers impede care for people with mental illnesses. Mental illnesses are shockingly common; they affect almost every American family. It can happen to a child, a a brother, a grandparent, or a co-worker.

or White American. It can occur at any stage of life, from childhood to old age.

In any given year, about 5% to 7% of adults have a serious mental illness, according to several nationally representative studies.1-3 A similar percentage of children - about 5% to 9% - have a serious emotional disturbance. These figures mean that millions of adults and children are disabled by mental illnesses every year.1; President Bush said, "... Americans must understand and send this message: mental disability is not a scandal - it is an illness.

And like physical illness, it is treatable, especially when the treatment comes early." Over the years, science has broadened our knowledge about mental health and illnesses, showing the potential to improve the way in which mental health care is provided. The U.S. Department of Health and Human Services (HHS) released Mental Health: A Report of the Surgeon General, which reviewed

scientific advances in our understanding of mental health and mental illnesses. However, despite substantial investments that have enormously increased the scientific knowledge base and have led to developing many effective treatments, many Americans are not benefiting from these investments. Far too often, treatments and services that are based on rigorous clinical research languish for years rather than being used effectively at the earliest opportunity. For instance, according to the Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, the lag between discovering effective forms of treatment and incorporating them into routine patient care is unnecessarily long, lasting about 15 to 20 years.

Mental illnesses rank first among illnesses that cause disability in the United States, Canada, and Western Europe.12 This serious public health challenge is under-recognized as a public health burden. In addition, one of the most distressing and preventable consequences of undiagnosed, untreated, or under-treated mental illnesses is suicide. The World Health Organization (WHO) recently reported that suicide worldwide causes more deaths every year than homicide or war. In addition to the tragedy of lost lives, mental illnesses come with a devastatingly high financial cost. In the U.S., the annual economic, indirect cost of mental illnesses is estimated to be $79 billion. Most of that

amount - approximately $63 billion - reflects the loss of productivity as a result of illnesses. But indirect costs also include almost $12 billion in mortality costs (lost productivity resulting from premature death) and almost $4 billion in productivity losses for incarcerated individuals and for the time of those who provide family care. In 1997, the latest year comparable data are available, the United States spent more than $1 trillion on health care, including almost $71 billion on treating mental illnesses. Mental health expenditures are predominantly publicly funded at 57%, compared to 46% of overall health care expenditures. Between 1987 and 1997, mental health spending did not keep pace with general health care because of declines in private health spending under managed care and cutbacks in hospital expenditures. In 1997, the United States spent more than $1 trillion on health care, including almost $71 billion on treating mental illnesses.

In its Interim Report to the President, the Commission declared, "... the mental health delivery system is fragmented and in disarray ... lead[ing] to unnecessary and costly disability, homelessness, school failure and incarceration." The report described the extent of unmet needs and barriers to care, including:

The Interim Report concluded that the system is not oriented to the single most important goal of the people it serves - the hope of recovery. State-of-the-art treatments, based on decades of research, are not being transferred from research to community settings. In many communities, access to quality care is poor, resulting in wasted resources and lost opportunities for recovery.

More individuals could recover from even the most serious mental illnesses if they had access in their communities to treatment and supports that are tailored to their needs. The Commission recognizes that thousands of dedicated, caring, skilled providers staff and manage the service delivery system. The Commission does not attribute the shortcomings and failings of the contemporary system to a lack of professionalism or compassion of mental health care workers. Rather, problems derive principally from the manner in which the Nation's community-based mental health system has evolved over the past four to five decades. In short, the Nation must replace unnecessary institutional care with efficient, effective community services that people can count on. It needs to integrate programs that are fragmented across levels of government and among many agencies.

To improve access to quality care and services, the Commission recommends fundamentally transforming how mental health care is delivered in America. The goals of this fundamental change are clear and align with the direction that the President established. To improve access to quality care and services, the Commission recommends fundamentally transforming how mental health care is delivered in America.

To achieve the promise of community living for everyone, new service delivery patterns and incentives must ensure that every American has easy and continuous access to the most current treatments and best support services. Advances in research, technology, and our understanding of how to treat mental illnesses provide powerful means to transform the system. In a transformed system, consumers and family members will have access to timely and accurate information that promotes learning, self-monitoring, and accountability. Health care providers will rely on up-to-date knowledge to provide optimum care for the best outcomes. When a serious mental illness or a serious emotional disturbance is first diagnosed, the health care provider - in full partnership with consumers and families - will develop an individualized plan of care for managing the illness. This partnership of personalized care means basically choosing who,

The highest quality of care and information will be available to consumers and families, regardless of their race, gender, ethnicity, language, age, or place of residence. Because recovery will be the common, recognized outcome of mental health services, the stigma surrounding mental illnesses will be reduced, reinforcing the hope of recovery for every individual with a mental illness.

general public to fear, reject, avoid, and discriminate against people with mental illnesses. Stigma is widespread in the United States and other Western nations. Stigma leads others to avoid living, socializing, or working with, renting to, or employing people with mental disorders - especially severe disorders, such as schizophrenia. It leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking and wanting to pay for care.5 Responding to stigma, people with mental health problems internalize public attitudes and become so embarrassed or ashamed that they often conceal symptoms and fail to seek treatment.

As more individuals seek help and share their stories with friends and relatives, compassion will be the response, not ridicule. Successfully transforming the mental health service delivery system rests on two principles:

First, services and treatments must be consumer and family centered, geared to give consumers real and meaningful choices about treatment options and providers - not oriented to the requirements of bureaucracies.

Second, care must focus on increasing consumers' ability to successfully cope with life's challenges, on facilitating recovery, and on building resilience, not just on managing symptoms.

Recovery refers to the process in which people are able to live, work, learn, and participate fully in their communities. For some individuals, recovery is the ability to live a fulfilling and productive life despite a disability. For others, recovery implies the reduction or complete remission of symptoms. Science has shown that having hope plays an integral role in an individual's recovery. Resilience means the personal and community qualities that enable us to rebound from adversity, trauma, tragedy, threats, or other stresses - and to go on with life with a sense of mastery, competence, and hope. We now understand from research that resilience is fostered by a positive childhood and includes positive individual traits, such as optimism, good problem-solving skills, and treatments. Closely-knit communities and neighborhoods are also resilient, providing supports for their members.

Transforming the system so that it will be both consumer and family centered and recovery-oriented in its care and services presents invigorating challenges. Incentives must change to encourage continuous improvement in agencies that provide care. New, relevant research findings must be systematically conveyed to front-line providers so that they can be applied to practice quickly. Innovative strategies must inform researchers of the unanswered questions of consumers,

families, and providers. Research and treatment must recognize both the commonalities and the differences among Americans and must offer approaches that are sensitive to our diversity. Treatment and services that are based on proven effectiveness and consumer preference - not just on tradition or outmoded regulations - must be the basis for reimbursements.The Nation must invest in the infrastructure to support emerging technologies and integrate them

into the system of care. This new technology will enable consumers to collaborate with service providers, assume an active role in managing their illnesses, and move more quickly toward recovery.

The Commission identified the following six goals as the foundation for transforming mental health care in America. The goals are intertwined. No single step can achieve the fundamental restructuring that is needed to transform the mental health care delivery system.

Achieving these goals will transform mental health care in America. The following section of this report gives an overview of each goal of the transformed system, as well as the Commission's recommendations for moving the Nation toward achieving it. In the remainder of this report, the Commission discusses each goal in depth, showcasing model programs to illustrate the goal in practice and providing specific recommendations needed to transform the mental health system in America.

In a transformed mental health system, Americans will seek mental health care when they need it - with the same confidence that they seek treatment for other health problems. As a Nation, we will take action to ensure our health and well being through learning, self-monitoring, and accountability. We will continue to learn how to achieve and sustain our mental health.The stigma that surrounds mental illnesses and seeking care for mental illnesses will be reduced or eliminated as a barrier. National education initiatives will shatter the misconceptions about mental illnesses, thus helping more Americans understand the facts and making them more willing to seek help for mental health problems. Education campaigns will also target specific audiences, including:

When people have a personal understanding of the facts, they will be less likely to stigmatize mental illnesses and more likely to seek help for mental health problems. The actions of reducing stigma, increasing awareness, and encouraging treatment will create a positive cycle that leads to a healthier population. As a Nation, we will also understand that good mental health can have a positive impact on the course of other illnesses, such as cancer, heart disease, and diabetes. Improving services for individuals with mental illnesses will require paying close attention to how mental health care and general medical care systems work together. While mental health and physical health are clearly connected, the transformed system will provide collaborative care to

bridge the gap that now exists. Effective mental health treatments will be more readily available for most common mental disorders and will be better used in primary care settings. Primary care providers will have the necessary time, training, and resources to appropriately treat mental health problems. Informed

consumers of mental health service will learn to recognize and identify their symptoms and will seek care without the fear of being disrespected or stigmatized. Older adults, children and adolescents, individuals from ethnic minority groups, and uninsured or low-income patients who are treated in public health care settings will receive care for mental disorders. Understanding that mental health is essential to overall health is fundamental for establishing a health system that treats mental illnesses with the same urgency as it treats physical illnesses. The transformed mental health system will rely on multiple sources of financing with the flexibility to pay for effective mental health treatments and services. This is a basic principle for a recovery-oriented system of care.

To aid in transforming the mental health system, the Commission makes two recommendations:

1.1 Advance and implement a national campaign to reduce the stigma of seeking care and a national strategy for suicide prevention.

In a transformed mental health system, a diagnosis of a serious mental illness or a serious emotional disturbance will set in motion a well-planned, coordinated array of services and treatments defined in a single plan of care. This detailed roadmap - a personalized, highly individualized health management

program - will help lead the way to appropriate treatment and supports that are oriented toward recovery and resilience. Consumers, along with service providers, will actively participate in designing and developing the systems of care in which they are involved. An individualized plan of care will give consumers, families of children with serious emotional disturbances, clinicians, and other providers a valid opportunity to construct and maintain meaningful,

productive, and healing relationships. Opportunities for updates - based on changing needs across the stages of life and the requirement to review treatment plans regularly - will be an integral part of the approach. The plan of care will be at the core of the consumer-centered, recovery-oriented mental health

system. The plan will include treatment, supports, and other assistance to enable consumers to better integrate into their communities; it will allow consumers to realize improved mental health and quality of life.

In partnership with their health care providers, consumers and families will play a larger role in managing the funding for their services, treatments, and supports. Placing financial support increasingly under the management of consumers and families will enhance their choices. By allowing funding to follow

consumers, incentives will shift toward a system of learning, self-monitoring, and accountability. This program design will give people a vested economic interest in using resources wisely to obtain and sustain recovery.

The transformed system will ensure that needed resources are available to consumers and families. The burden of coordinating care will rest on the system, not on the families or consumers who are already struggling because of a serious illness. Consumers' needs and preferences will drive the types and mix of

services provided, considering the gender, age, language, development, and culture of consumers. The plan of care will be at the core of the consumer-centered, recovery-oriented mental health system. To ensure that needed resources are available to consumers and families in the transformed system, States will develop a comprehensive mental health plan to outline responsibility for coordinating and integrating programs. The State plan will include consumers and families and will create a new partnership among the Federal, State, and local governments. The plan will address the full range of treatment and support service programs that mental health consumers and families need. In exchange for this accountability, States will have the flexibility to combine Federal, State, and local resources in creative, innovative, and more efficient ways, overcoming the bureaucratic boundaries between health care, employment supports, housing, and the criminal justice systems. Increased flexibility and stronger accountability will expand the choices and the array of services and

supports available to attain the desired outcomes. Creative programs will be developed to respond to the needs and preferences of consumers and families, as reflected in their individualized plans of care. Giving consumers the ability to participate fully in their communities will require a few essentials:

In this transformed system services will be readily available so that consumers no longer face unemployment, homelessness, or incarceration because of untreated mental illnesses.

Consumers' rights will be protected concerning the use of seclusion and restraint. Seclusion and restraint will be used only as safety interventions of last resort, not as treatment interventions. Only licensed practitioners who are specially trained and qualified to assess and monitor consumers' safety and the

significant medical and behavioral risks inherent in using seclusion and restraint will be able to order these interventions. The hope and the opportunity to regain control of their lives -often vital to recovery - will become real for consumers and families. Consumers will play a significant role in shifting the current system to a recovery-oriented one by participating in planning, evaluation, research, training, and service delivery. To aid in transforming the mental health system, the Commission makes five recommendations:

2.1 Develop an individualized plan of care for every adult with a serious mental illness and child with a serious emotional disturbance.

2.2 Involve consumers and families fully in orienting the mental health system toward recovery.

2.3 Align relevant Federal programs to improve access and accountability for mental health services.

In a transformed mental health system, all Americans will share equally in the best available services and outcomes, regardless of race, gender, ethnicity, or geographic location. Mental health care will be highly personal, respecting and responding to individual differences and backgrounds. The workforce will include

members of ethnic, cultural, and linguistic minorities who are trained and employed as mental health service providers. People who live in rural and remote geographic areas will have access to mental health professionals and other needed resources. Advances in treatments will be available in rural and less

populated areas. Research and training will continuously aid clinicians in understanding how to appropriately tailor interventions to the needs of consumers, recognizing factors such as age, gender, race,

Services will be tailored for culturally diverse populations and will provide access, enhanced quality, and positive outcomes of care. American Indians, Alaska Natives, African Americans, Asian Americans, Pacific Islanders, and Hispanic Americans will not continue to bear a disproportionately high burden of

disability from mental health disorders.1 These populations will have accessible, available mental health services. They will receive the same high quality of care that all Americans receive. To develop culturally

competent treatments, services, care, and support, mental health research will include these underserved populations. In addition, providers will include individuals who share and respect the beliefs, norms, values, and patterns of communication of culturally diverse populations. In rural and remote geographic areas, service providers will be more readily available to help create a

consumer-centered system. Using such tools as videoconferencing and telehealth, advances in treatments will be brought to rural and less populated areas of the country. These technologies will be used to provide care at the same time they break down the sense of isolation often experienced by consumers.

Mental health education and training will be provided to general health care providers, emergency room staff, and first responders, such as law enforcement personnel and emergency medical technicians, to overcome the uneven geographic distribution of psychiatrists, psychologists, and psychiatric social

To aid in transforming the mental health system, the Commission makes two recommendations:

Goal 4 - Early Mental Health Screening, Assessment, and Referral to Services Are Common Practice

In a transformed mental health system, the early detection of mental health problems in children and adults - through routine and comprehensive testing and screening - will be an expected and typical occurrence. At the first sign of difficulties, preventive interventions will be started to keep problems from escalating. For example, a child whose serious emotional disturbance is identified early will receive care, preventing the potential onset of a co-occurring substance use disorder and breaking a cycle that otherwise can lead to

school failure and other problems. Quality screening and early intervention will occur in both readily accessible, low-stigma settings, such as primary health care facilities and schools, and in settings in which a high level of risk exists for mental health problems, such as criminal justice, juvenile justice, and child welfare systems. Both children and adults will be screened for mental illnesses during their routine physical exams. For consumers of all ages, early detection, assessment, and links with treatment and supports will help prevent mental health problems from worsening. Service providers across settings will also routinely screen for co-occurring mental illnesses and substance use disorders. Early intervention and appropriate treatment will also improve outcomes and reduce pain and suffering for children and adults who have or who are at risk for co-occurring mental and addictive disorders. Early detection of mental disorders will result in substantially shorter and less disabling courses of impairment.

For consumers of all ages, early detection, assessment, and links with treatment and supports will help prevent mental health problems from worsening.

To aid in transforming the mental health system, the Commission makes four recommendations:

4.3 Screen for co-occurring mental and substance use disorders and link with integrated treatment strategies.

4.4 Screen for mental disorders in primary health care, across the lifespan, and connect to treatment and supports.

In a transformed mental health system, consistent use of evidence-based, state-of-the art medications and psychotherapies will be standard practice throughout the mental health system. Science will inform the provision of services, and the experience of service providers will guide future research. Every time any

American - whether a child or an adult, a member of a majority or a minority, from an urban or rural area - comes into contact with the mental health system, he or she will receive excellent care that is consistent with our scientific understanding of what works. That care will be delivered according to the consumer's individualized plan.

Research has yielded important advances in our knowledge of the brain and behavior, and helped develop effective treatments and service delivery strategies for many mental disorders. In a transformed system, research will be used to develop new evidence-based practices to prevent and treat mental illnesses. These discoveries will be immediately put into practice. Americans with mental illnesses will fully benefit from the enormous increases in the scientific knowledge base and the development of many effective treatments.

To aid in transforming the mental health system, the Commission makes four recommendations:

5.1 Accelerate research to promote recovery and resilience, and ultimately to cure and prevent mental illnesses.

5.2 Advance evidence-based practices using dissemination and demonstration projects and create a public-private partnership to guide their implementation.

5.3 Improve and expand the workforce providing evidence-based mental health services and supports.

5.4 Develop the knowledge base in four understudied areas: mental health disparities, long-term effects of medications, trauma, and acute care.

Information In a transformed mental health system, advanced communication and information technology will empower consumers and families and will be a tool for providers to deliver the best care. Consumers and families

will be able to regularly communicate with the agencies and personnel that deliver treatment and support services and that are accountable for achieving the goals outlined in the individual plan of care. Information about illnesses, effective treatments, and the services in their community will be readily available to consumers and families.

Access to information will foster continuous, caring relationships between consumers and providers by providing a medical history, allowing for self-management of care, and electronically linking multiple service systems. Providers will access expert systems that bring to bear the most recent breakthroughs and studies of optimal outcomes to facilitate the best care options. Having agreed to use the same health messaging standards, pharmaceutical codes, imaging standards, and laboratory test names, the Nation's

health system will be much closer to speaking a common language and providing superior patient care. Informed consumers and providers will result in better outcomes and will more efficiently use resources.

Electronic health records can improve quality by promoting adoption and adherence to evidence-based practices through inclusion of clinical reminders, clinical practice guidelines, tools for clinical decision support, computer order entry, and patient safety alert systems. For example, prescription medications being taken or specific drug allergies would be known, which could prevent serious injury or death resulting from drug interactions, excessive dosages or allergic reactions. Access to care will be improved in many underserved rural and urban communities by using health technology, telemedicine care, and consultations. Health technology and telehealth will offer a powerful

means to improve access to mental health care in underserved, rural, and remote areas. The privacy of personal health information - especially in the case of mental illnesses - will be strongly protected and controlled by consumers and families. With appropriate privacy protection, electronic records will enable

essential medical and mental health information to be shared across the public and private sectors. Reimbursements will become flexible enough to allow implementing evidence-based practices and coordinating both traditional clinical care and e-health visits. In both the public and private sectors, policies

will change to support these innovative approaches. The privacy of personal health information - especially in the case of mental illnesses - will be strongly protected and controlled by consumers and families.

An integrated information technology and communications infrastructure will be critical to achieving the five preceding goals and transforming mental health care in America. To address this technological need in the mental health care system, this goal envisions two critical technological components:

* An integrated health records system and a personal health information system for providers and patients.

To aid in transforming the mental health system, the Commission makes two recommendations:

6.1 Use health technology and telehealth to improve access and coordination of mental health care, especially for Americans in remote areas or in underserved populations.

6.2 Develop and implement integrated electronic health record and personal health information systems.

Preventing mental illnesses remains a promise of the future. Granted, the best option is to avoid or delay the onset of any illness, but the Executive Order directed the Commission to conduct a comprehensive study of the delivery of mental health services. The Commission recognizes that it is better to prevent an illness than to treat it, but unmet needs and barriers to services must first be identified to reach the millions of Americans with existing mental illnesses who are deterred from seeking help. The barriers may exist for a variety of reasons:

The Commission - aware of all the limitations on resources - examined realigning Federal financing with a keen awareness of the constraints. As such, the policies and improvements recommended in this Final Report reflect policy and program changes that make the most of existing resources by increasing cost

effectiveness and reducing unnecessary and burdensome regulatory barriers, coupled with a strong measure of accountability. A transformed mental health system will more wisely invest resources to provide optimal care while making the best use of limited resources. The process of transforming mental health care in America drives the system toward a delivery structure that will give consumers broader discretion in how care decisions are made. This shift will give consumers more confidence to require that care be sensitive to their needs, that the best available treatments and supports be available, and that demonstrably effective technologies be widely replicated in different

settings. This confidence will then enhance cooperative relationships with mental health care professionals who share the hope of recovery.

The culture of the patient, also known as the consumer of mental health services, influences many aspects of mental health, mental illness, and patterns of health care utilization. One important cautionary note, however, is that general statements about cultural characteristics of a given group may invite stereotyping of individuals based on their appearance or affiliation. Because there is usually more diversity within a population than there is between populations (e.g., in terms of level of acculturation, age, income, health status, and social class), information in the following sections should not

be treated as stereotypes to be broadly applied to any individual member of a racial, ethnic, or cultural group.

The symptoms of mental disorders are found worldwide. They cluster into discrete

disorders that are real and disabling (U.S. Department of Health and Human Services [DHHS], 1999). As noted in Chapter 1, mental disorders are defined in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association [APA], 1994). Schizophrenia, bipolar disorder, panic disorder, obsessive compulsive disorder, depression, and other disorders have similar and recognizable symptoms throughout the world (Weissman et al., 1994, 1996, 1997, 1998). Culture-bound syndromes, which appear to be distinctive to certain ethnic groups, are the exception to this general statement. Research has not yet determined whether culture-bound syndromes are distinct1 from established mental disorders, are variants of them, or whether both mental disorders and culture-bound syndromes reflect different ways in which the cultural and social environment interacts with genes to shape illness (Chapter 1).

One way in which culture affects mental illness is through how patients describe (or present) their symptoms to their clinicians. There are some well recognized differences in symptom presentation across cultures. The previous chapter described ethnic variation in symptoms of somatization, the expression of distress through one or more physical (somatic) symptoms (Box 1-3). Asian patients, for example, are more likely to report their somatic symptoms, such as dizziness, while not reporting their emotional symptoms. Yet, when questioned further, they do acknowledge having emotional symptoms (Lin & Cheung, 1999). This finding supports the view that patients in different cultures tend to

selectively express or present symptoms in culturally acceptable ways (Kleinman, 1977, 1988). Cultures also vary with respect to the meaning they impart to illness, their way of making sense of the subjective experience of illness and distress (Kleinman, 1988). The meaning of an illness refers to deep-seated attitudes and beliefs a culture holds about whether an illness is “real” or “imagined,” whether it is of the body or the mind (or both), whether it

warrants sympathy, how much stigma surrounds it, what might cause it, and what type of person might succumb to it. Cultural meanings of illness have real consequences in terms of whether people are motivated to seek treatment, how they cope with their symptoms, how supportive their families and communities are, where they seek help (mental health specialist, primary care provider, clergy, and/or traditional healer), the pathways they take to get services, and how well they fare in treatment. The consequences can be grave — extreme distress, disability, and possibly, suicide — when people with severe mental

Cultural and social factors contribute to the causation of mental illness, yet that contribution varies by disorder. Mental illness is considered the product of a complex interaction among biological, psychological, social, and cultural factors. The role of any one of these major factors can be stronger or weaker depending on the disorder (DHHS, 1999). The prevalence of schizophrenia, for example, is similar throughout the world (about 1 percent of the population), according to the International Pilot Study on Schizophrenia, which examined over 1,300 people in 10 countries (World Health Organization [WHO], 1973). International studies using similarly rigorous research methodology have extended the WHO’s findings to two other disorders: The lifetime prevalence of bipolar disorder (0.3–1.5%) and panic disorder (0.4–2.9%) were shown to be relatively consistent across parts of Asia, Europe, and North America (Weissman et al., 1994, 1996, 1997, 1998). The global consistency in symptoms and prevalence of these disorders, combined with results of family and molecular genetic studies, indicates that they have high heritability (genetic contribution to the variation of a disease in a population) (National Institute of Mental Health [NIMH], 1998). In other words, it seems that culture and societal factors play a more sub-ordinate role in causation of these disorders.

Cultural and social context weigh more heavily in causation of depression. In the same international studies cited above, prevalence rates for major depression varied from 2 to 19 percent across countries (Weissman et al., 1996). Family and molecular biology studies also indicate less heritability for major depression than for bipolar disorder and schizophrenia (NIMH, 1998). Taken together, the evidence points to social and cultural factors, including exposure to poverty and violence, playing a greater role in the onset of major epression. In this context, it is important to note that poverty, violence, and other

stressful social environments are not unique to any part of the globe, nor are the symptoms and manifestations they produce. However, factors often linked to race or ethnicity, such as socioeconomic status or country of origin can increase the likelihood of exposure to these types of stressors.

Cultural and social factors have the most direct role in the causation of post-traumatic stress disorder (PTSD). PTSD is a mental disorder caused by exposure to severe trauma, such as genocide, war combat, torture, or the extreme threat of death or serious injury (APA, 1994). These traumatic experiences are associated with the later development of a longstanding pattern of symptoms accompanied by biological changes (Yehuda, 2000). Traumatic experiences are particularly common for certain populations, such as U.S. combat veterans, inner-city residents, and immigrants from countries in turmoil. Studies

described in the chapters on Asian Americans and Hispanic Americans reveal alarming rates of PTSD in communities with a high degree of pre-immigration exposure to trauma (Chapters 5 and 6). For example, in some samples, up to 70 percent of refugees from Vietnam, Cambodia, and Laos met diagnostic criteria for PTSD. By contrast, studies of the U.S. population as a whole find PTSD to have a prevalence of about 4 percent (DHHS, 1999).

Suicide rates vary greatly across countries, as well as across U.S. ethnic sub-groups

(Moscicki, 1995). Suicide rates among males in the United States are highest for American Indians and Alaska Natives (Kachur et al., 1995). Rates are lowest for African American women (Kachur et al., 1995). The reasons for the wide divergence in rates are not well understood, but they are likely influenced by variations in the social and cultural con-texts for each subgroup (van Heeringen et al., 2000; Ji et al., 2001). Even though there are similarities and differences in the distribution of certain mental disorders across populations, the United States has an aggregate rate of about 20 percent of adults and children with diagnosable mental disorders (DHHS, 1999; Table 1-1). As

noted in Chapter 1, this aggregate rate for the population as a whole does not have sufficient representation from most minority groups to permit comparisons between whites and other ethnic groups. The rates of mental disorder are not sufficiently studied in many smaller ethnic groups to permit firm conclusions about overall prevalence; how-ever, several epidemiological studies of ethnic populations, supported by the NIMH, are currently in progress (Chapter 7). Until more definitive findings are available, this Supplement concludes, on the basis of smaller studies, that overall prevalence rates for mental disorders in the United States are similar across minority and majority populations. As noted in Chapter 1, this general conclusion applies to racial and ethnic minority populations living in the community, because high-need subgroups are not well

Many features of family life have a bearing on mental health and mental illness. Starting with etiology, Chapter 1 highlighted that family factors can protect against, or contribute to, the risk of developing a mental illness. For example, supportive families and good sibling relation-ships can protect against the onset of mental illness. On the other hand, a family environment marked by severe marital discord, overcrowding, and social disadvantage can contribute to the onset of mental illness. Conditions such as child abuse, neglect, and sexual abuse also place children at risk for mental disorders and suicide (Brown et al., 1999; Dinwiddie et al., 2000). Family risk and protective factors for mental illness vary across ethnic groups. But research has not yet reached the point of identifying whether the variation across ethnic groups is a result of that group’s culture, its social class and relationship to the broader

society, or individual features of family members. One of the most developed lines of research on family factors and mental illness deals with relapse in schizophrenia. The first studies, conducted in Great Britain, found that

people with schizophrenia who returned from hospitalizations to live with family

members who expressed criticism, hostility, or emotional involvement (called high expressed emotion) were more likely to relapse than were those who returned to family members who expressed lower levels of negative emotion (Leff & Vaughn, 1985; Kavanaugh, 1992; Bebbington & Kuipers, 1994; Lopez & Guarnaccia, 2000). Later studies extended this line of research to Mexican American samples. These studies reconceptualized the role of family as a dynamic interaction between patients and their families, rather than as static family characteristics (Jenkins, Kleinman, & Good, 1991; Jenkins, 1993). Using this approach, a study comparing Mexican American and white families found that different types of interactions predicted relapse. For the Mexican American families, interactions featuring distance or lack of warmth predicted relapse for the individual with schizophrenia better than interactions featuring criticism. For whites, the converse was true (Lopez et al., 1998). This example, while not necessarily

generalizable to other Hispanic groups, suggests avenues by which other culturally based family differences may be related to the course of mental illness.

Culture relates to how people cope with everyday problems and more extreme types of adversity. Some Asian American groups, for example, tend not to dwell on upsetting thoughts, thinking that reticence or avoidance is better than outward expression. They place a higher emphasis on suppression of affect (Hsu, 1971; Kleinman, 1977), with some tending first to rely on themselves to cope with distress (Narikiyo & Kameoka, 1992). African Americans tend to take an active approach in facing personal problems, rather than avoiding them (Broman, 1996). They are more inclined than whites to depend on handling distress on their own (Sussman et al., 1987). They also appear to rely more on spirituality to help them cope with adversity and symptoms of mental illness (Broman, 1996; Cooper-Patrick et al., 1997; Neighbors et al., 1998). Few doubt the importance of culture in fostering different ways of coping, but research is sparse. One of the few, yet well developed lines of research on coping styles comes from

comparisons of children living in Thailand versus America. Thailand’s largely Buddhist religion and culture encourage self-control, emotional restraint, and social inhibition. In a recent study, Thai children were two times more likely than American children to report reliance on covert coping methods such as “not talking back,” than on overt coping methods such as “screaming” and “running away” (McCarty et al., 1999). Other studies by these investigators established that different coping styles are associated with different types and degrees of problem behaviors in children (Weisz et al., 1997). The studies noted here suggest that better under-standing of coping styles among racial and ethnic minorities has implications for the promotion of mental health, the prevention

It is well documented that racial and ethnic minorities in the United States are less likely than whites to seek mental health treatment, which largely accounts for their under-representation in most mental health services (Sussman et al., 1987; Kessler et al., 1996; Vega et al. 1998; Zhang et al., 1998). Treatment seeking denotes the pathways taken to reach treatment and the types of treatments sought (Rogler & Cortes, 1993). The pathways are the sequence of contacts and their duration once someone (or their family) recognizes their distress as a health problem. Research indicates that some minority groups are more likely than whites to delay seeking treatment until symptoms are more severe (See Chapters 3 & 5). Further, racial and ethnic minorities are less inclined than whites to seek treatment from mental health specialists (Gallo et al., 1995; Chun et al., 1996; Zhang et al., 1998). Instead, studies indicate that minorities turn more often to primary care (Cooper-Patrick et al., 1999a; see later section on Primary Care). They also turn to informal sources of care such as clergy, traditional healers, and family and friends (Neighbors & Jackson, 1984; Peifer et al., 2000). In particular, American Indians and Alaska Natives often rely on traditional healers, who frequently work side-by-side with formal providers in tribal mental health programs (Chapter 4). African Americans often rely on ministers, who may play various mental health roles as counselor, diagnostician, or referral agent (Levin, 1986). The extent to which minority groups rely on informal sources in lieu of, or in addition to, formal mental health services in primary or specialty care is not well studied.

When they use mental health services, Some African Americans prefer therapists of the same race or ethnicity. This preference has encouraged the development of ethnic-specific programs that match patients to therapists of the same culture or ethnicity (Sue, 1998). Many African Americans also prefer counseling to drug therapy (Dwight-Johnson et al., 2000). Their concerns revolve around side effects, effectiveness, and addiction potential of medications (Cooper-Patrick et al., 1997). The fundamental question raised by this line of research is: Why are many racial and ethnic minorities less inclined than whites to seek mental health treatment? Certainly, the constellation of barriers deterring whites also operates to various degrees for minorities — cost, fragmentation of services, and the societal stigma on mental illness (DHHS, 1999). But there are extra barriers deterring racial and ethnic minorities such as mistrust and limited English proficiency.

Mistrust was identified by the SGR as a major barrier to the receipt of mental health treatment by racial and ethnic minorities (DHHS, 1999). Mistrust is widely accepted as pervasive among minorities, yet there is surprisingly little empirical research to document it (Cooper-Patrick et al., 1999). One of the few studies on this topic looked at African Americans and whites surveyed in theearly 1980s in a national study known as the Epidemiologic Catchment Area (ECA) study. This study found that African Americans with major depression were more likely to cite their fears of hospitalization and of treatment as reasons for not seeking mental health treatment. For instance, almost half of African Americans, as opposed to 20 percent of whites, reported being afraid of mental

health treatment (Sussman et al., 1987). What are the reasons behind the lack of trust? Mistrust of clinicians by minorities arises, in the broadest sense, from historical persecution and from present-day struggles with racism and discrimination. It also arises from documented abuses and perceived mistreatment, both in the past and more recently, by medical and mental health

professionals (Neal-Barnett & Smith, 1997; see later section on “Clinician Bias and Stereotyping”). A recent survey conducted for the Kaiser Family Foundation (Brown et al., 1999) found that 12 percent of African Americans and 15 percent of Latinos, in comparison with 1 percent of whites, felt that a doctor or health provider judged them unfairly or treated them with disrespect because of their race or ethnic background. Even stronger ethnic differences were reported in the Commonwealth Fund Minority Health Survey: It found that 43 percent of African Americans and 28 percent of Latinos, in comparison with 5 percent of whites, felt that a health care provider treated them badly because of their race or ethnic background (LaVeist et al., 2000). Mistrust of mental health professionals is exploited by present day antipsychiatry groups that target the

Mistrustful attitudes also may be commonplace among other groups. While insufficiently studied, mistrust toward health care providers can be inferred from a group’s attitudes toward government-operated institutions. Immigrants and refugees from many regions of the world, including Central and South America and Southeast Asia, feel extreme mistrust of government, based on atrocities committed in their country of origin and on fear of deportation by U.S. authorities. Similarly, many American Indians and Alaska Natives are mistrustful of health care institutions; this dates back through centuries of legalized discrimination and segregation, as discussed in Chapter 4.

Stigma was portrayed by the SGR as the “most formidable obstacle to future progress in the arena of mental illness and health” In response to societal stigma, people with mental problems internalize public attitudes and become so embarrassed or ashamed that they often conceal symptoms and fail to seek treatment (Sussman et al., ). Stigma also lowers their access to resources and opportunities, such as housing and employment, and leads to diminished self-esteem and greater isolation and hopelessness (Penn & Martin, 1998; Corrigan & Penn, 1999). Stigma can also be against family members; this damages the consumer’s self-esteem and family relationships (Wahl & Harman, 1989). In some Asian cultures, stigma is so extreme that mental illness is thought to reflect poorly on family line-age and thereby diminishes marriage and economic prospects for other family members as well (Sue & Morishima, 1982; Ng, 1997).

Stigma is such a major problem that the very topic itself poses a challenge to research. Researchers have to contend with people’s reluctance to disclose attitudes often deemed socially unacceptable. How stigma varies by culture can be studied from two perspectives. One perspective is that of the targets of stigma, i.e., the people with symptoms: If they are members of a racial or ethnic minority, are they more likely than whites to experience stigma? The other perspective is that of the public in their attitudes toward people with mental illness: Are members of each racial or ethnic minority group more likely than whites to hold stigmatizing attitudes toward mental illness? The answers

to these cross-cultural questions are far from definitive, but there are some interesting clues from research.

Turning first to those who experience symptoms, one of the few cross-cultural studies questioned Asian Americans living in Los Angeles. The findings were eye-opening: Only 12 percent of Asians would mention their mental health problems to a friend or relative (versus 25 percent of whites). A meager 4 percent of Asians would seek help from a psychiatrist or specialist (versus 26 per-cent of whites). And only 3 percent of Asians would seek help from a physician (versus 13 percent of whites). The study concluded that stigma was pervasive and pronounced for Asian Americans in Los Angeles (Zhang et al., 1998).

Turning to the question of public attitudes toward mental illness, the largest and most detailed study of stigma in the United States was performed in 1996 as part of the General Social Survey, a respected, nationally representative survey being conducted by the National Opinion Research Center since the 1970s. In this study, a representative sample was asked in personal interviews to respond to different vignettes depicting people with mental illness. The respondents generally viewed people with mental illness as dangerous and less competent to handle their own affairs, with their harshest judgments reserved for people with schizophrenia and substance use disorders. Interestingly, neither the ethnicity of the respondent, nor the ethnicity of the person portrayed in the vignette, seemed to influence the degree of stigma (Pescosolido et al., 1999).

By contrast, another large, nationally representative study found a different relationship between race, ethnicity, and attitudes towards patients with mental illness. Asian and Hispanic Americans saw them as more dangerous than did whites. Although having contact with individuals with mental illness helped to reduce stigma for whites, it did not for African Americans. American Indians, on the other hand, held attitudes similar to whites (Whaley, 1997).

Taken together, these results suggest that minorities hold similar, and in some cases stronger, stigmatizing attitudes toward mental illness than do whites. Societal stigma keeps minorities from seeking needed mental health care, much as it does for whites. Stigma is so potent that it not only affects the self-esteem of people with mental illness, but also that of family members. The bottom line is that stigma does deter major segments of the population, majority and minority alike, from seeking help. It bears repeating that a majority of all people with diagnosable mental disorders do not get treatment (DHHS, 1999).

Migration, a stressful life event, can influence mental health. Often called acculturative stress, it occurs during the process of adapting to a new culture (Berry et al., 1987). Refugees who leave their homelands because of extreme threat from political forces tend to experience more trauma, more undesirable change, and less control over the events that define their exits than do voluntary immigrants. The psychological stress associated with immigration tends to be concentrated in the first three years after arrival in the United States (Vega & Rumbaut, 1991). According to studies of Southeast Asian refugees, an initial euphoria often characterizes the first year following migration, followed by a strong disenchantment and demoralization reaction during the second year. The third year includes a gradual return to well-being and satisfaction (Rumbaut, 1985, 1989). This U-shaped curve has been observed in Cubans and Eastern Europeans (Portes & Rumbaut, 1990). Similarly, Ying (1988) finds that Chinese immigrants who have been in the United States less than one year have fewer symptoms of distress than those residing here for several years. Korean American immigrants have been found to have the highest levels of depressive symptoms in the one to two years following immigration; after three years, these symptoms remit (Hurh & Kim, 1988). Although immigration can bring stress and subsequent psychological distress, research results do not suggest that immigration per se results in higher rates of mental disorders (e.g., Vega et al., 1998). However, as described in the chapters on Asian Americans and Latinos, the traumas experienced by adults and children from war-torn countries before and after immigrating to the United States seem to result in high rates of post-traumatic stress disorder (PTSD) among these populations.

The burden of illness in the United States is higher in racial and ethnic minorities than whites. The National Institutes of Health (NIH) recently reported that compared with the majority populations, U.S. minority populations have shorter overall life expectancies and higher rates of cardiovascular disease, cancer, infant mortality, birth defects, asthma, diabetes, stroke, adverse con-sequences of substance abuse, and sexually transmitted diseases (DHHS, 2000; NIH, 2000). The list of illnesses is overpoweringly long.

Disparities in health status have led to high-profile research and policy initiatives. One long-standing policy initiative is Healthy People, a comprehensive set of national health objectives issued every decade by the Department of Health and Human Services. The most recent is Healthy People 2010, which contains both well defined objectives for reducing health disparities and the means for monitoring progress (DHHS, 2000). Higher rates of physical (somatic) disorders among racial and ethnic minorities hold significant implications for mental health. For example, minority individuals who do not

have mental disorders are at higher risk for developing problems such as depression and anxiety because chronic physical illness is a risk factor for mental disorders (DHHS, 1999; see also earlier section). Moreover, individuals from racial and ethnic minority groups who already have both a mental and a physical disorder (known as comorbidity) are more likely to have their mental disorder missed or misdiagnosed, owing to competing demands on primary care providers who are preoccupied with the treatment of the somatic disorder (Borowsky, et al., 2000; Rost et al., 2000). Even if their mental disorder is recognized and treated, people with comorbid disorders are saddled by more

drug interactions and side effects, given their higher usage of medications. Finally, people with comorbid disorders are much more likely to be unemployed and disabled, compared with people who have a single disability (Druss et al., 2000). Thus, poor somatic health takes a toll on mental health. And it is probable that some of the mental health disparities described in this Supplement are linked to the poorer somatic health status of racial and ethnic minorities. The interrelationships between mind and body are inescapably evident.

Few families in the United States are untouched by mental illness. Determining just how many people have mental illness is one of the many purposes of the field of epidemiology. Epidemiology is the study of patterns of disease in the population. Among the key terms of this discipline, encountered throughout this report, are incidence, which refers to new cases of a condition which occur during a specified period of time, and prevalence, which refers to cases (i.e., new and existing) of a condition observed at a point in time or during a period of time. According to current epidemiological estimates, at least one in five people has a diagnosable mental disorder during the course of a year

Epidemiological estimates have shifted over time because of changes in the definitions and diagnosis of mental health and mental illness. In the early 1950s, the rates of mental illness estimated by epidemiologists were far higher than those of today. One study, for example, found 81.5 percent of the population of Manhattan, New York, to have had signs and symptoms of mental distress (Srole, 1962). This led the authors of the study to conclude that mental illness was widespread. However, other studies began to find lower rates when they used more restrictive definitions that reflected more contemporary views about mental illness. Instead of classifying anyone with signs and symptoms as being mentally ill, this more recent line of epidemiological research only identified people as mentally ill if they had a cluster of signs and symptoms that, when taken together, impaired people’s ability to function (Pasamanick, 1959; Weissman et al., 1978). By 1978, the President’s Commission on Mental Health (1978) concluded conservatively that the annual prevalence of specific mental disorders in the United States was about 15 percent. This figure comports with recent estimates of the extent of mental illness in the population. Even as this figure has become more sharply delineated, the older and larger estimates underscore the magnitude of mental distress in the population, which this report refers to as “mental health problems.”

The current prevalence estimate is that about 20 percent of the U.S. population are affected by mental disorders during a given year. The surveys estimate that during a 1-year period, 22 to 23 percent of the U.S. adult population—or 44 million people—have diagnosable mental disorders, according to reliable, established criteria. In general, 19 percent of the adult U.S. population have a mental disorder alone (in 1 year); 3 percent have both mental and addictive disorders; and 6 percent have addictive disorders alone.3 Consequently, about 28 to 30 percent of the population have either a mental or addictive disorder (Regier et al., 1993b; Kessler et al., 1994). Individuals with co-occurring disorders (about 3 percent of the population in 1 year) are more likely to experience a chronic course and to utilize services than are those with either type of disorder alone. Clinicians, program developers, and policy makers need to be aware of these high rates of comorbidity—about 15 percent of those with a mental disorder in 1 year (Regier et al., 1993a; Kessler et al., 1996).

A subpopulation of 5.4 percent of adults is considered to have a “serious” mental illness (SMI) (Kessler et al., 1996). Serious mental illness is a term defined by Federal regulations that generally applies to mental disorders that interfere with some area of social functioning. About half of those with SMI (or 2.6 percent of all adults) were identified as being even more seriously affected, that is, by having “severe and persistent” mental illness (SPMI) (NAMHC, 1993; Kessler et al., 1996). This category includes schizophrenia, bipolar disorder, other severe forms of depression, panic disorder, and obsessive-compulsive disorder. These disorders and the problems faced by these special populations with SMI and SPMI are described further in subsequent chapters. Among those most severely disabled are the approximately 0.5 percent of the population who receive disability benefits for mental health-related reasons from the Social Security Administration (NAMHC, 1993).

The annual prevalence of mental disorders in children and adolescents is not as well documented as that for adults. About 20 percent of children are estimated to have mental disorders with at least mild functional impairment (see Table 2-7). Federal regulations also define a sub-population of children and adolescents with more severe functional limitations, known as “serious emotional disturbance” (SED).4 Children and adolescents with SED number approximately 5 to 9 percent of children ages 9 to 17 (Friedman et al., 1996b).

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The costs of mental illness are exceedingly high. The direct costs of mental health services in the United States in 1996 totaled $69.0 billion. This figure represents 7.3 percent of total health spending. An additional $17.7 billion was spent on Alzheimer’s disease and $12.6 billion on substance abuse treatment. Direct costs correspond to spending for treatment and rehabilitation nationwide. When economists calculate the costs of an illness, they also strive to identify indirect costs. Indirect costs can be defined in different ways, but here they refer to lost productivity at the workplace, school, and home due to premature death or disability. The indirect costs of mental illness were estimated in 1990 at $78.6 billion (Rice & Miller, 1996). More than 80 percent of these costs stemmed from disability rather than death because mortality from mental disorders is relatively low.

This chapter examines what recent research has revealed about the organization and financing of mental health services as well as the cost and quality of those services. The discussion places emphasis on the tremendous growth of managed care and the attempts to gain parity in insurance. Understanding these issues can inform the decisions made by people with mental health problems and disorders, as well as their family members and advocates, and health care administrators and policymakers. Earlier chapters reviewed data on the occurrence of mental disorders in the population at large and described the treatment system. In each stage of the life cycle, issues related to mental health services have been discussed, including, for example, the breadth of mental health and human services involved in caring for children with mental health problems and disorders; deinstitutionalization and its role in shaping contemporary mental health services for children and adults; the problems associated with discontinuity of care in a fragmented service system; and the importance of primary care medical providers in meeting the mental health needs of older persons. Special mental health services concerns such as homelessness, criminalization of persons with mental illness, and disparities in access to and utilization of mental health services due to racial, cultural, and ethnic identities as well as other demographic characteristics have been discussed throughout the report. There are four main sections in this chapter. The first section provides an overview of the current system of mental health services. It describes where people get care and how they use services. The next section presents information on the costs of care and trends in spending. The third section discusses the dynamics of insurance financing and managed care. It also addresses both positive and adverse effects of managed care on access and quality and describes efforts to guard against untoward consequences of aggressive cost-containment policies. The final section documents some of the inequities between general medical and mental health care and describes efforts to correct them through legislation, regulation, and financing changes.

A broad array of services and treatments exists to help people with mental illnesses—as well as those at particular risk of developing them—to suffer less emotional pain and disability and live healthier, longer, and more productive lives. Mental disorders and mental health problems are treated by a variety of caregivers who work in diverse, relatively independent, and loosely coordinated facilities and services—both public and private—that researchers refer to, collectively, as the de facto mental health service system (Regier et al., 1978; Regier et al., 1993).About 15 percent of all adults and 21 percent of U.S. children and adolescents use services in the de facto system each year. The system is usually described as having four major components or sectors:

* The specialty mental health sector consists of mental health professionals such as psychiatrists, psychologists, psychiatric nurses, and psychiatric social workers who are trained specifically to treat people with mental disorders. The great bulk of specialty treatment is now provided in outpatient settings such as private office-based practices or in private or public clinics. Most acute hospital care is now provided in special psychiatric units of general hospitals or beds scattered throughout general hospitals. Private psychiatric hospitals and residential treatment centers for children and adolescents provide additional intensive care in the private sector. Public sector facilities include state/county mental hospitals and multiservice mental health facilities, which often coordinate a wide range of outpatient, intensive case management, partial hospitalization, and inpatient services. Altogether, slightly less than 6 percent of the adult population and about 8 percent of children and adolescents (ages 9 to 17) use specialty mental health services in a year.

* The general medical/primary care sector consists of health care professionals such as general internists, pediatricians, and nurse practitioners in office-based practice, clinics, acute medical/surgical hospitals, and nursing homes. More than 6 percent of the adult U.S. population use the general medical sector for mental health care, with an average of about 4 visits per year—far lower than the average of 14 visits per year found in the specialty mental health sector.1 The general medical sector has long been identified as the initial point of contact for many adults with mental disorders; for some, these providers may be their only source of mental health services. However, only about 3 percent of children and adolescents contact general medical physicians for mental health services; the human services sector (see below) plays a much larger role in their care.

* The human services sector consists of social services, school-based counseling services, residential rehabilitation services, vocational rehabilitation, criminal justice/prison-based services, and religious professional counselors. In the early 1980s, about 3 percent of U.S. adults used mental health services from this sector. But by the early 1990s, the National Comorbidity Survey (NCS) revealed that 5 percent of adults used such services. For children, school mental health services are a major source of care (used by 16 percent), as are services in the child welfare and juvenile justice systems, which serve about 3 percent.

* The voluntary support network sector, which consists of self-help groups, such as 12-step programs and peer counselors, is a rapidly growing component of the mental and addictive disorder treatment system. The Epidemiologic Catchment Area (ECA) study demonstrated that about 1 percent of the adult population used self-help groups in the early 1980s; the NCS showed a rise to about 3 percent in the early 1990s.

The de facto mental health service system is divided into public and private sectors. The term“public sector” refers both to services directly operated by government agencies (e.g., state and county mental hospitals) and to services financed with government resources (e.g., Medicaid, a Federal-state program for financing health care services for people who are poor and disabled, and Medicare, a Federal health insurance program primarily for older Americans and people who retire early due to disability). Publicly financed services may be provided by private organizations. The term“private sector” refers both to services directly operated by private agencies and to services financed with private resources (e.g., employer-provided insurance). Funding for the de facto mental health service system is discussed later in the report.

State and local government has been the major payer for public mental health services historically and remains so today. Since the mid-1960s, however, the role of the Federal government has increased. In addition to Medicare and Medicaid, the Federal government funds special programs for adults with serious mental illness and children with serious emotional disability. Although small in relation to state and local funding, these Federal programs provide additional resources. They include the Community Mental Health Block Grant, Community Support programs, the PATH program for people with mental illness who are homeless, the Knowledge Development and Application Program, and the Comprehensive Community Mental Health Services for Children and Their Families Program. The fact that 16 percent of the U.S. adult population—largely the working poor—have no health insurance at all is the focus of considerable policy activity. Many others are inadequately insured. Initiatives designed to increase enrollment for selected populations include the newly created Child Health Insurance Program, which provides block grants to states for coverage of children not eligible for Medicaid. These federally funded public sector programs buttress the traditional responsibility of state and local mental health systems and serve as the mental health service “safety net” and “catastrophic insurer” for those citizens with the most severe problems and the fewest resources in the United States. The public sector serves particularly those individuals with no health insurance, those who have insurance but no mental health coverage, and those who exhaust limited mental health benefits in their health insurance. Each sector of the de facto mental health service system has different patterns and types of care and different patterns of funding. Within the specialty mental health sector, state- and county-funded mental health services have long served as a safety net for people unable to obtain or retain access to privately funded mental health services. The general medical sector receives a relatively greater proportion of Federal Medicaid funds, while

the voluntary support network sector, staffed principally by people with mental illness and their families, is largely funded by private donations of time and money to emotionally supportive and educational groups. The relative quality of care in these various sectors is a matter of intense interest and discussion, although there is little definitive research to date.

Effective functioning of the mental health service system requires connections and coordination among many sectors (public–private, specialty–general health, health–social welfare, housing, criminal justice, and education). Without coordination, it can readily become organizationally fragmented, creating barriers to access. Adding to the system’s complexity is its dependence on many streams of funding, with their sometimes competing incentives. For example, if as part of a Medicaid program reform, financial incentives lead to a reduction in admissions to psychiatric inpatient units in general hospitals and patients are sent to state mental hospitals instead, this cost containment policy conceivably could conflict with a policy directive to reduce the census of state mental hospitals.The public and private parts of the de facto mental health system treat distinct populations with some overlap. As shown in Table 6-1, 11 percent of the U.S. population use specialty or general medical mental health services each year. Nearly 10 percent of the population—almost all users—received some care in private facilities, while 2 percent of the population received care in public facilities. About 1 percent of the population used inpatient care; of these, one-third received care in the public sector, suggesting that those requiring more intensive services rely more heavily on the public safety net (Regier et al., 1993; Kessler et al., 1994). Nonetheless, many people with severe and persistent illness now receive at least some of their care in the private sector. This makes it important to ensure that the private sector can meet the full treatment needs of this population.

Americans use the mental health service system in complex ways, or patterns. A total of about 15 percent of the U.S. adult population use mental health services in any given year. These data come from two epidemiologic surveys: the Epidemiologic Catchment Area (ECA) study of the early 1980s and the National Comorbidity Survey (NCS) of the early 1990s. Those surveys defined mental illness according to the prevailing editions of the Diagnostic and Statistical Manual of Mental Disorders (i.e., DSM-III and DSM- IIIR) and defined mental health services in accordance with the “de facto” system described above. Figure 6-1 presents a hierarchy of sectors in the treatment system (i.e., specialty mental health, general medical, and other human services).2 About 6 percent of the adult population use specialty mental health care; 5 percent of the population receive their mental health services from general medical and/or human services providers, and 3 to 4 percent of the population receive their mental health services from other human service professionals or self-help groups. Also, slightly more than half of the 15 percent of the population that use mental health services have a specific mental or addictive disorder (8 percent), while the remaining portion has a mental health problem or a disorder not included in the ECA or NCS (7 percent). The surveys estimate that during a 1-year period, about one in five American adults—or 44 million people— have diagnosable mental disorders, according to reliable, established criteria. To be more specific, 19 percent of the adult U.S. population have a mental disorder alone (in 1 year); 3 percent have both mental and addictive disorders; and 6 percent have addictive disorders alone. Consequently, about 28 percent of the population have either a mental or addictive disorder (Regier et al., 1993; Kessler et al., 1994).

Given that 28 percent of the population have a diagnosable mental or substance abuse disorder and only 8 percent of adults both have a diagnosable disorder and use mental health services, one can conclude that less than one-third of adults with a diagnosable mental disorder receives treatment in one year. In short, a substantial majority of those with specific mental disorders do not receive treatment. Figure 6-1 depicts the 28 percent of the U.S. adult population who meet full criteria for a mental or addictive disorder, and illustrates that 8 percent receive mental health services while 20 percent do not receive such services in a given year. Among the service users with specific disorders, between 30 and 40 percent perceived some need for care. However, most of those with disorders who did not seek care believed their problems would go away by themselves or that they could handle them on their own (Kessler et al., 1997). In a recent 1998 Robert Wood Johnson national household telephone survey, 11 percent of the population perceived a need for mental or addictive services, with about 25 percent of these reporting difficulties in obtaining needed care (Sturm & Sherbourne, 1999). Worry about costs was listed as the highest reason for not receiving care, with 83 percent of the uninsured and 55 percent of the privately insured listing this reason. The inability to obtain an appointment soon enough because of an insufficient supply of services was listed by 59 percent of those with Medicaid but by far fewer of those with private insurance.

Comparable data on service use by children and adolescents with diagnoses of mental disorder and at least minimal impairment only recently have been obtained from a National Institute of Mental Health (NIMH) multisite survey of children and adolescents ages 9 to 17 years (Shaffer et al., 1996). Results from this survey are summarized in Table 6-2 and in Figure 6-2. Although 9 percent of the entire child/adolescent sample received some mental health services in the health sector (that is, the general medical sector and specialty mental

health sector), the largest provider of mental health services to this population was the school system. As shown in Figure 6-2, nearly 11 percent of the child/adolescent sample received their mental health services exclusively from the schools or the human services sector (with no services from the health sector); another 5 percent (not shown in Figure 6-2) received school services in addition to health sector services. Many children served by schools do not have diagnosable mental health conditions covered in available surveys—some may have other diagnoses such as adjustment reactions or acute stress reactions. In addition, 1 percent of children and adolescents received their mental health services from human service professionals, such as those in child welfare and juvenile justice. The latter is a setting under increasing scrutiny as the result of pending Federal legislation. At present, child data are unavailable that would exactly match the adult data on service use (analyzed by diagnostic severity and by public versus private sectors).

Almost 21 percent of children and adolescents (ages 9 to 17) had some evidence of distress or impairment associated with a specific diagnosis and also had at least a minimal level of impairment on a global assessment measure. Almost half of this group (almost 10 percent of the child/adolescent population) had some treatment in one or more sectors of the de facto mental health service system, and the remainder (more than 11 percent of the population) received no treatment in any sector of the health care system. This translates to a majority with mental disorders not receiving any care. Of the 21 percent of the young population receiving any mental health services, slightly less than half (about 10 percent) met full criteria for a mental disorder diagnosis; the remainder (more than 11 percent of the population) received diagnostic or treatment services for mental health problems, conditions that do not fully meet diagnostic criteria (Shaffer et al., 1996).

PAN DISCUSSION GROUP