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Executive Summary

Section 1: Looking Ahead and Reflecting Upon the Past
In an editorial prospective presented in Chapter 1, Manderscheid and Henderson examine where the mental health system is likely to be a century hence. Four scenarios are constructed to examine changes in the roles persons with mental illness will have in the future and how these changes will interact with simultaneous changes in the treatment of mental illness. The four scenarios predict that human rights will be established as fundamental in our health care system; consumers and family members will seek and be given more responsibility for health and health care; technology will become a primary vehicle for delivering health care; and genetic treatments for biologically based disorders will become routine. Readers are encouraged to help construct the future, not just wait for it to unfold.

In Chapter 2, Grob describes the evolution of the U.S. mental health care system from the end of the 19th century to the end of the 20th. Early in this period, local responsibility diminished in favor of State government and the burgeoning State mental hospital system. This pattern continued unabated until near mid-century, when the appropriateness of institutional care was questioned, and the early outlines of community care were becoming evident. Changes in care concepts, the introduction of medications, changes in financing at the Federal level, and the development of community mental health centers all contributed to the process of deinstitutionalization, which Grob analyzes in detail. Some of the key issues raised by this process gave rise to new forms of integrated community-based care that have shown some success, yet there are still large numbers of homeless and unemployed persons with mental illness, as well as individuals with mental illness in the criminal justice system who have not been effectively reached by this new care system. Much remains to be done as we enter the 21st century.

Section 2: Status of Mental Health Statistics at the Millennium
In Chapter 3, Henderson, Minden, and Manderscheid present the key outlines of a new developmental mental health information system framework for the 21st century. This work is based on the belief that improving information for the entire field is at the heart of improving the quality of mental health care. Currently, the mental health field has critical needs for improved information as a part of major efforts to improve the quality of care.

CMHS is working to meet those needs. Decision Support 2000+ is being designed to meet these needs through support for better decisionmaking, accountability, recording of data, simplified reporting at all levels, and continuous quality improvement. Based in the public health model, Decision Support 2000+ will incorporate data standards for epidemiology and needs assessment; insurance enrollment; encounter, practice guideline, human resource, organizational, and financial information about services; and key quality measures needed in the new managed care environment: outcomes, report cards, and performance indicators. Currently, a requirements analysis is available for comment at the Web site www.mhsip.org, and minimum data sets are being completed for each of the domains of measurement. Decision Support 2000+ has been made possible through developmental work undertaken by the Survey and Analysis Branch Division of State and Community Systems Development, Center for Mental Health Services (CMHS) and the Mental Health Statistics Improvement Program (MHSIP) community.

Van Tosh brings the consumer and family perspective to information in Chapter 4. She asserts that the mental health field needs an excellent information system; a principal application of this information system will be to provide essential information to consumers and family members. Information needs of consumers and families range from types and costs of services to accreditation status and utilization review procedures. Van Tosh also identifies key benefits of Decision Support 2000+ for consumers and families: reduced fragmentation and increased accountability for services; promotion of visionary policy development; and reinforcement of the link between service delivery and quality of care. The challenges to implementing Decision Support 2000+ will include guaranteeing informed consent, promoting consumer and family access to medical records, expanding service choice, and ensuring accurate data interpretation and reporting.

In Chapter 5, Kessler, Costello, Merikangas, and Ustin provide a status report on psychiatric epidemiology at the beginning of 21st century. Descriptive psychiatric epidemiology is at a less developed stage for children and adolescents than for adults because of developmental changes that children undergo and the question of who should report for them. For adults, the major surveys carried out over the past quarter-century have produced reliable information on prevalence, age of onset, disability, and treatment. Recently, some have questioned the diagnostic criteria leading to the high prevalence shown in these surveys. The techniques developed in these adult surveys have been applied to clinical epidemiological surveys as well. Surveys of elderly persons represent a new frontier. Challenges that need to be faced in the future include underreporting and production of estimates for small geographical areas.

Analytical and experimental psychiatric epidemiology are much less developed than are descriptive and clinical epidemiology. However, new work is emerging on modifiable risk factors and preventive interventions; psychiatric epidemiologists need more involvement in these endeavors. Areas of psychiatric epidemiology that show particular promise for the future include application of developmental principles to child and adolescent disorders and to comorbidity; genetic epidemiology; and work on barriers to help seeking. Likely future challenges include linking multiple risk factors with multiple outcomes; integrating psychiatric epidemiology
with prevention science and social policy analysis; initiating more work on secondary prevention; and understanding the determinants of help-seeking behavior.

Chapter 6 authors Manderscheid, Henderson, and Brown offer a status report on national accountability efforts in mental health. Quality accountability can refer to practices, outcomes, plan performance, or system performance. Criteria to judge quality tools in each of these areas include simplicity, communality, and appropriateness. Clinical practice guidelines are being developed, but not in a consistent way; system practice guidelines are in their infancy. The Practice Guideline Coalition seeks to reduce the variability in clinical practice guidelines and related measures; both will receive increased attention in the future. Outcome measures can help identify effective practices and provide a vehicle for future reimbursement. Field work is under way to develop outcome measures for both children and adults.

An important development is person-centered outcomes and related consumer surveys. In the near term, calibration work among instruments will be a high priority. Report cards have emerged in the past 5 years to provide an overview of plan performance. The MHSIP Consumer-Oriented Report Card is currently being tested by 40 States. In the future, report cards will describe not only plan performance, but contributions to the community as well. The development of performance indicators has paralleled that of report cards. The CMHS is working with both States and the private sector to develop performance indicator systems. This work shows considerable promise. Overall, the tension will continue between the need for common accountability tools and the uniqueness demanded at a time when mental health services are considered to be a commodity.

Section 3: Status of Mental Health Services at the Millennium
In Chapter 7, Mechanic sets the framework for the section by examining the challenges and opportunities mental health policy confronts at the millennium. He notes that the past 50 years have witnessed extraordinary improvements in mental health insurance coverage and care. At the 20th century's end, managed care is further accelerating the transformation of the field. Within this context, Mechanic reviews the gains and unanticipated consequences of mental health policy in six areas: deinstitutionalization, improved treatment technologies, mental health parity, the legal context and criminal justice services, managed behavioral health care, and the growth of consumer and family involvement. Deinstitutionalization has been the most enduring change of the past 50 years, but service networks have yet to be built in many communities, and many persons with mental illness have been criminalized. Through sustained research, improved treatment technologies have emerged, including better drug therapies and better psychosocial management approaches, but much remains to be learned about mental illness. Progress is being made in adopting parity for mental health insurance coverage, yet agreement does not exist on the scope of the population to be covered. The Americans with Disabilities Act and the Olmstead Supreme Court decision have promoted community living for persons with mental illness, but new restrictions, such as outpatient commitment, have grown apace. Managed behavioral health care has improved the focus on quality of care and outcome, yet the carveouts have prevented needed service integration. The consumer and family movements, particularly the National Alliance for the Mentally Ill, have grown exponentially in the past 20 years, but full integration of consumer and family initiatives remains in its infancy. Clearly, future advances will be contingent upon learning more about mental illness and evolving appropriate policy to consolidate the new knowledge and to learn from past mistakes.

Frank and McGuire review the transformations of the mental health economy and mental health economics over the past 50 years in Chapter 8. Central to their review is the notion that we have moved from a predominantly planned mental health economy in the 1950's to a predominantly market economy at present. Frank and McGuire attribute this change to several factors, including a decrease in the relative role of government as a payer for mental health care and the emergence of private markets between 1965 and 1985. The latter factor is partially attributable to the emergence of Medicare and Medicaid payment systems, the growth and increasing range of mental health professionals, the evolution of improved treatments, and the rapid growth of managed behavioral health care over the past decade. What has been learned over this 50-year period? The authors list four factors: financial incentives do influence the volume and quality of care; markets can fail, resulting in differential copayments; managed care can control spending without limiting insurance coverage; outcome returns from mental health care are substantial and improving. In this context, Frank and McGuire conclude that mental health economics will have a major role in policy formulation as we enter the 21st century.

In Chapter 9, Ross examines the promise and the reality of managed behavioral health care. Managed care has changed the landscape of modern mental health care. The most recent statistics available show that almost 177 million Americans have their behavioral health care benefits managed by one of the managed behavioral health care organizations, and an additional 19 million are in a health maintenance organization (HMO). Yet, at least eight major issues are confronting managed behavioral health care: ability to control cost; substitution of types of mental health services; adequacy of services; seamless systems of care; medical necessity vs. clinical necessity vs. human necessity; public accountability; consumer, family, and enrollee participation; and forms of delivery. Clearly, managed behavioral health care can control costs. Cost control is accomplished through substitution of ambulatory for inpatient services and the use of medical necessity criteria. Thus, a question arises as to whether sufficient resources are being expended for the care of persons with severe mental illnesses. Good systems of care must have clear boundaries and responsibilities among components, or the components must be integrated; neither situation prevails currently. Public accountability is in its infancy, particularly around outcome and consumer-oriented measures, and the comparative effects of the different models of managed care are only dimly understood. Consumer, family, and enrollee participation is rare in key aspects of services. Ross concludes that managed care has overpromised what it can deliver.

Chapter 10 author Osher presents the latest information on the prevalence and treatment of co-occurring mental and addictive disorders. The current estimate of the annual prevalence of such disorders is approximately 10 million persons. Although identification and characterization of persons with these disorders remains difficult, several factors are known: Persons with co-occurring disorders are much more likely to seek mental health and substance abuse services, and persons with particular mental disorders are more likely to develop substance abuse disorders at a later point. Achieving good outcomes is difficult. Over the past decade, research and professional consensus have converged on comprehensive, integrated care as the preferred method of treatment. Care must be based on the principles of acceptance, accessibility, integration, continuity, individualized treatment, comprehensiveness, quality, responsible implementation, and optimism and recovery. New models are being developed to share responsibility for this population among primary care, mental health, and substance abuse providers depending on severity and the exact combination of disorders, and to detail how integrated services can be developed. Osher concludes that the failure to implement comprehensive care for persons with co-occurring disorders is a failure of clinical and administrative leadership.

In Chapter 11, Salzer, Blank, Rothbard, and Hadley provide an overview of the status of adult mental health services at the beginning of the 21st century. They note that the changes in mental health services over the past three decades rival developments that have occurred over the two centuries since the Colonial period. The authors then review four key factors that have influenced the current status of adult mental health services: service planning, financing and service organization, development of community long-term care supports, and the rapid evolution of psychopharmacological and psychosocial interventions. The recent history of service planning derives partly from the history of modern mental health epidemiology, as well as the growth of the Community Support Program philosophy and a consumer orientation characterized by informal care, self-help, and consumer and family networks. For the past decade, financing has been dominated by managed behavioral health care, which has resulted in increased cost controls and rapid movement toward service integration. Services have moved from institutions to communities, with several waves of deinstitutionalization. Community services have benefited from the development of the Program of Assertive Community Treatment, together with other long-term residential supports. Psychopharmacology has advanced rapidly over the past decade, and psychosocial interventions have proven their effectiveness during this period. Yet the adult services field still confronts several major challenges, including the difficulties associated with translating research findings into effective practices and the lack of adherence to practice guidelines known to be effective. The authors conclude that cautious, but not undue, optimism is warranted.

Chapter 12 author Zito presents results from a study of change in pharmacotherapy for the treatment of attention deficit hyperactivity disorder (ADHD). From Medicaid records in two States and the records of an HMO, the author was able to show large increases in the prescription of stimulants over a 10-year interval. Stimulant use increased more than 600 percent for those under age 20 in the HMO; stimulant use among 5-to 14-year-olds was twofold greater in the Medicaid setting than in the HMO. Differences were observed by age, gender, race, and geographic locale. Increased medication use appears to be related to a larger number of youths in treatment, longer times in treatment, and concurrent use of stimulants and ancillary medications. Other related factors include less stringent diagnostic criteria; increasing identification of comorbidities, such as depression; and the large role of primary care practices in treating ADHD. Zito concludes by calling for careful consideration of the appropriateness, safety, and long-term effectiveness of current pharmacotherapy prescription practices¹.

In Chapter 13, Jaranson, Martin, and Ekblad provide a status report on the epidemiology and mental health care of refugees— persons who are outside the country of their nationality because of fear of being persecuted. In 1999, there were an estimated 13. 5 million refugees worldwide, down from almost 17 million at the beginning of the decade. The largest number was in the Middle East (6 million), followed by Africa (3 million), Europe and South Asia (1. 7 million each), the Americas (750 thousand), and East Asia and the Pacific (500 thousand). The decrease in number of refugees is due to repatriation, as well as an increased difficulty in finding countries willing to accept them. U.S. policies and practices on accepting refugees are reviewed from this point of view. Refugees are at particular risk not only for developing mental disorders, but also for failing to receive treatment for their illnesses. Risk factors for poor mental health include marginalization and minority status, socioeconomic disadvantage, poor physical health, starvation and malnutrition, head trauma and injuries, collapse of social supports, mental trauma, and difficulty in adapting to host cultures. The most common mental health problems include anxiety disorders, such as post-traumatic stress disorder (PTSD); depressive disorders; suicidal ideation and attempts; anger, aggression, and violent behavior; drug and alcohol abuse; paranoia, suspicion, and distrust; somatization and hysteria; and sleeplessness. Some studies of refugees have found PTSD rates in excess of 50 percent, while others have found elevated rates of anxiety and depression. Coping factors include availability of extended family, access to employment, participation in self-help groups, and situational transcendence. To be most effective, good-quality mental health care must be coupled with a health infrastructure based on primary care. However, since many refugees do not get formal help, it is important to train community members to recognize signs and symptoms of mental health problems so that informal support can be provided. Additional research is needed on mental health care for refugees, but linkages among scientists, service providers, and policy makers are equally important if progress is to be made in improving care delivery.

Section 4: Key Elements of the National Statistical Picture
Chapter 14 authors Manderscheid, Atay, Hernandez-Cartegena, Edmond, Male, Parker, Zhang, and Edmond provide an overview of mental health organizations in 1998, together with major national and State trends. In 1998, a total of 5,722 mental health organizations were operating. These organizations maintained 261,903 inpatient and residential treatment beds. Inpatient and residential treatment additions numbered 2,313,594, and additions to less than 24-hour services numbered 3,967,019. Residents of inpatient and residential treatment services on the first day of the year numbered 215,798. Total episodes of care in mental health organizations in 1998 grew to 10, 714,398. In conjunction with these findings from 1998, the chapter also presents l994 staffing and financial data for all mental health organizations and trend data for selected years back to 1970. Episode data from 1955, the year that marks the beginning of deinstitutionalization for the State mental hospitals, are contrasted with episode data for 1998. Policy implications of the observed trends are discussed, and State maps are presented for 1998 inpatient and residential treatment beds and additions, and for additions to less than 24-hour services. All results are from the Survey of Mental Health Organizations and General Hospital Mental Health Services.

In Chapter 15, Milazzo-Sayre, Henderson, Manderscheid, Bokossa, Evans, and Male provide an overview of the characteristics of persons treated in specialty mental health programs during 1997. Results derive from the CMHS 1997 Client/Patient Sample Survey. Overall, approximately 2. 3 million persons were under care and 5.5 million persons were admitted during 1997 to specialty mental health inpatient, residential, and less than 24-hour care programs. Admissions outnumbered the under care population by a wide margin in all three program types, and this differential was most dramatic for inpatient care programs. More males than females were treated in inpatient and residential programs, while both genders were fairly evenly represented in less than 24-hour settings. Although Whites comprised the preponderance of persons receiving services in 1997, American Indians/Alaska Natives and Blacks/African Americansshowed higher rates of care relative to their numbers in the population. Admissions tended to be younger than persons under care in each of the three program types. Persons with a principal diagnosis of schizophrenia comprised fairly large proportions of the caseloads in each program type but were more predominant in inpatient and residential care programs. For each program type, further detail is provided in the chapter for persons under care and persons admitted to each of the types of facilities surveyed.

Lutterman and Hogan present an analysis of the expenditures and revenues of State mental health agencies (SMHAs) between 1981 and 1997 in Chapter 16. In 1997, the SMHAs expended more than $16 billion for mental health services. Although this number reflects an overall increase over the $14.2 billion expended in 1993 and the $12.1 billion expended in 1990, when the expenditures are adjusted for inflation, actual expenditures decreased 7 percent between 1990 and 1997. This decrease is due principally to the fact that SMHA expenditures declined from 2. 12 percent to 1. 8 percent of State government expenditures during this period. Of note, community-based services represented 56 percent of total expenditures in 1997, compared with 41 percent for State mental hospitals. SMHAs exhibited wide variability in their per capita expenditure patterns; geographic regions of the United States showed less variability among the SMHAs. Expenditure patterns are also presented for different types of mental health services, including forensic services, and for psychiatric medications. SMHA funding came from State government tax revenues ($11.4 billion); the Federal Government, principally through Medicaid ($4 billion); first-and third-party payments ($822 million); and local government ($95 million). The Community Mental Health Services Block Grant has declined from 2.4 percent of expenditures to 1.5 percent of expenditures between 1990 and 1997.

In Chapter 17, Gonzalez, Hall, Pandiani, McGrew, Elliott, Volo, Davis, Smith, and Callahan examine several of the performance indicators from the 16-State Indicator Pilot Project to highlight policy and decisionmaking implications of these indicators and related data. The 16-State Project is a joint effort of the CMHS, the National Association of State Mental Health Program Directors, and the SMHAs to define, test, and implement a set of 32 performance indicators for the SMHAs. The goal is to produce performance results so that States can be compared meaningfully and a national data base produced. The indicators in the project derive principally from the MHSIP Consumer-Oriented Report Card and the National Association of State Mental Health Program Directors Framework for Performance Indicators. The chapter covers the following performance indicators: access, active participation, quality, and outcomes from the Mental Health Statistics Improvement Program Consumer Survey; State psychiatric hospital utilization patterns; assertive community treatment and supported employment; new generation antipsychotic medications; readmission to a State psychiatric hospital within 30 days of discharge; consumers contacted by community providers within 7 days of hospital discharge; improvement in functioning and reduction in symptoms; and cost. The 16-State Project is approximately two-thirds completed at present.

Chapter 18 authors Goldstrom, Jaiquan, Henderson, Male, and Manderscheid report results from the first national survey ever conducted on the availability and use of mental health services in residential juvenile justice facilities. Of the 113, 000 children and adolescents in residential placements on any given day, at least 20 percent have a serious emotional disturbance. Overall, 94 percent of the juvenile justice facilities provide access to at least one mental health service. Facilities generally are more likely to provide medication therapy and emergency mental health services than screening and evaluation. Approximately three out of five facilities provide access to a psychiatrist. A large percentage of juvenile justice facilities work with outside organizations, such as community mental health centers and social service agencies, to provide the mental health services offered to youth in juvenile justice facilities. This survey is the third in a series on mental health services in correctional settings. The previous two have covered State prisons and local jails; results from these surveys have been published in previous editions of Mental Health, United States.

In Chapter 19, Colpe provides estimates for children and adolescents with psychiatric problems and related disabilities from the National Health Interview Survey on Disability. The survey covers the civilian noninstitutional population; the estimates are for children ages 5 to 17. Overall, Colpe estimates the population of children and adolescents with a psychiatric problem and/or a related significant behavioral impairment to be 4,106,000. Sub-estimates are as follows: those with a significant behavioral impairment but no psychiatric problem (2,230,000); those with a psychiatric problem but no significant behavioral impairment (529,000); those with a psychiatric problem and a significant behavioral impairment (1,347,000). The overall rate is 8.4 percent; this estimate is similar to estimates of 9 to 13 percent produced by the CMHS for children and adolescents, ages 9 to 17, with serious emotional disturbance. Among children and adolescents with a psychiatric problem or a related significant behavioral impairment, about two-thirds were male; one-third were from minority populations; two-thirds were from two-parent families; and more than half were from families with incomes in the poverty range. As a result of their problems, about 40 percent experienced a limitation in school activities, and more than 12 percent missed one or more school days in the past 2 weeks. About 19 percent were currently seeing a mental health provider, and an additional 11 percent had received therapy services in the past 12 months.

Chapter 20 continues a series begun in Mental Health, United States, 1990, to provide periodic updates on the size and composition of the human resources in mental health and the number of trainees preparing to work in the field. The authors of this chapter represent each of the disciplines that comprise the mental health field. This chapter provides a description of the demographic and training characteristics and professional activities of psychiatrists, psychologists, social workers, psychiatric nurses, counselors, marriage and family therapists, psychosocial rehabilitation counselors, school psychologists, and sociologists. Information includes the total number in each discipline, by year; their sex, age, and racial/ ethnic composition; their distribution by State and region; their years since completion of highest professional degree; their employment status and setting; and their distribution of work activities. Information on trainees is presented for each of the same disciplines by year. In Mental Health, United States, 1998, a new minimum data set was presented for human resources in mental health. This minimum data set is currently being tested in the field as part of the overall effort to improve data standards.

Reference
Jensen, P. S., Hinshaw, S. P., Swanson, J. M., Greenhill, L. L., Connors, C. K., Arnold, L. E., Abikoff, H. B., Elliott, G., Hechtman, L., Hoza, B., March, J. S., Newcorn, J. H., Pelham, W. E., Severe, J. B., Vitiello, B., Wells, K., & Wigal, T. (2000). Findings from the NIMH Multimodal Treatment Study of ADHD (MTA): Implications and Applications for Primary Care Providers. Journal of Developmental and Behavioral Pediatrics.

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