Testimony Presented by Diane T. Marsh, PhD, Before the President's New Freedom Commission on Mental Health
July 19, 2002
Good morning. Thank you for the opportunity to address the President's New Freedom Commission on Mental Health on behalf of the American Psychological Association (APA). It is an honor to speak before such a distinguished panel charged with the critical goal of improving our nation's mental health system. As chair of the APA Task Force on Serious Mental Illness and Serious Emotional Disturbance, I share your commitment to improving the lives of individuals of all ages who live with mental illness.
The significance of your work cannot be overestimated. Millions of vulnerable citizens struggle on a daily basis with mental disorders that undermine their present lives and imperil their future. To underscore the magnitude of this problem, according to Mental Health: A Report of the Surgeon General (U. S. Department of Health and Human Services [USDHHS], 1999), an estimated 20% of Americans ages 18 and older--1 in 5 adults--suffer from a diagnosable mental disorder in a given year. Of these adults, 5.4% have a serious mental illness, such as schizophrenia, bipolar disorder, or major depression. Approximately one in five children and adolescents ages 9 to 17 experiences a diagnosable mental disorder during the course of a year; from 5% to 9% have a serious emotional disturbance that results in more severe functional limitations in family, school, or community.
Although the President's Executive Order focuses primarily on the mental health service delivery system for individuals with serious mental disorders, your recommendations will have an impact on services and treatment for the full spectrum of mental health problems. Many factors affect treatment and services for all people with mental disorders, including the importance of prevention and early intervention, of outcome measures that reflect quality of life as well as symptom alleviation, of enhancing access to appropriate and effective mental health services for people of all ethnocultural and economic groups, of increasing cross-systems collaboration and integration, of expanding opportunities for education and training, and of reducing stigma and discrimination. Accordingly, meaningful efforts to improve the mental health system are necessarily broad and inclusive.
I would like to highlight four overarching issues. First, a lifespan developmental perspective is essential. For instance, some ostensibly “adult” disorders, such as bipolar disorder, often have their onset in adolescence. Further, many children with serious emotional disturbance later become adults with serious mental illness. Yet all too often, satisfactory transitional services are unavailable to assist these vulnerable young people and their families in accessing the adult service delivery system. Likewise, many adults with serious mental illness are now likely to have relatively normal lifespans in light of treatment advances. The number of persons aging with schizophrenia alone is expected to double in the next 30 years (Cohen, 1995). Approximately 2 million adults ages 65 and older have a diagnosable mood disorder, such as major depression, bipolar disorder, or dysthymia (Narrow, 1998), a number that is also expected to increase as the population ages. This projected increase has major implications for health care policy (Jeste & Munoz, 1999). Late-life mental disorders also impose substantial burdens on family members who assume caregiving roles for their relatives (Lefley, 1996).
Second, it is important to recognize the diagnostic and treatment challenges that characterize mental health treatment across the lifespan, including the high incidence of comorbidity among mental disorders. For example, attention-deficit/hyperactivity disorder (ADHD) and bipolar disorder may co-occur, although there are also other possibilities (e.g., that bipolar disorder has been misdiagnosed as ADHD or that the ADHD is a precursor to the bipolar disorder) (Carlson, 1996). Posttraumatic stress disorder (PTSD) may co-occur with other mental disorders, but the PTSD is typically underdiagnosed and often untreated (Harris & Fallot, 2001; Mueser et al., 1998). Likewise, substance use disorders are the most common comorbid complication associated with serious mental illness, yet these disorders are frequently underdiagnosed and untreated in this population (Drake & Mueser, 1996). Among older adults, treatment is often complicated by co-occurring medical problems, cognitive impairment, or long-term effects of psychotropic medications.
Third, we need to attend to the human context of mental disorders by focusing on the people beyond the symptoms, affirming their strengths, and learning from their experiences. Conveying the sense of hopelessness and helplessness that often accompanies a diagnosis of mental illness, one woman wrote: “Our futures appeared to us to be barren, lifeless places in which no dream could be planted and grow into reality” (Deegan, 1997b, p. 93). When they strike the young, mental disorders are often pervasively destructive (Jamison, 2002). In fact, suicide is the third leading cause of death among young people aged 10 to 24 (USDHHS, 2001). Another high-risk group is older Americans, who are disproportionately likely to commit suicide (Hoyert, 1999). Gender is also an important consideration. For instance, although depression affects more than 19 million Americans per year, women are twice as likely as men to experience a major depressive episode within a lifetime (Mazure, Keita, & Blehar, 2002).
Families as well as individuals are profoundly affected by mental disorders (Marsh, 1998, 2001). A participant in one of my family surveys, the mother of a teenager with a severe anxiety disorder, responded: “In the dark soul of the night, I grieve for all of us: for the anguish of the past and the present, and for the uncertainty of the future.” In reality, all members of the family are affected by mental illness, as this sibling conveys: “I was 16 when my 14-year-old brother had his first psychotic episode. He was hospitalized for most of my adolescence. His illness was the most devastating episode of my entire life.” With ample reason, families worry that their relative will experience homelessness, incarceration, isolation and abuse, life-threatening accidents and injuries, untreated medical problems, and premature death.
Finally, in spite of the challenges that accompany a diagnosis of mental disorder, there is nevertheless much cause for optimism. In recent years, we have seen a dramatic increase in our understanding of successful strategies for the identification and diagnosis of mental disorders in children and adolescents, as well as strategies for their treatment and service provision (Ringeisen & Hoagwood, 2002). A variety of effective interventions are now available, including psychosocial and psychopharmacological treatments, integrated community and prevention services, and school-based approaches. As documented in an expanding body of research findings, these interventions can successfully reduce symptoms of psychopathology, improve adaptive functioning, and sometimes serve as a buffer to further long-term impairment. Similarly auspicious developments characterize the treatment of adults with mental disorders. However, effective services and interventions can be successful only if we have a sufficient number of well-trained providers and if appropriate treatments reach those individuals in need in a timely fashion. The absence of early and effective treatment can have devastating consequences for these individuals, for their families, and for the larger society.
I will now focus on six issues that have important implications for the treatment of all mental disorders in both the public and private sectors, as well as for the design, delivery, and evaluation of mental health services in the United States. These include: 1) outcomes, 2) treatment, 3) access, 4) systems of care, 5) recovery, and 6) stigma.
The Executive Order establishing your commission underscores the importance of outcomes, specifically mentioning the attainment of each individual's maximum level of employment, self-care, interpersonal relationships, and community participation. Reflecting that mandate, a comprehensive and effective system of mental health care will support people with mental disorders in fulfilling their unique potential and in leading satisfying and productive lives in their communities. Consequently, service systems should be designed to focus on promotion of mental health and improved quality of life, as well as on symptom alleviation.
These aspirational outcomes should be incorporated into outcome measures. Because individuals with mental disorders often have problems in multiple domains, a range of outcomes may be important, including decreased cognitive, social, behavioral, and emotional symptoms; improved functioning in home, school, workplace, and community; patient and family satisfaction with treatment; enhanced personal growth and well-being; improved family and peer relationships; and negative treatment effects. For all ages, outcome measures should incorporate a person-centered approach that reflects the needs, desires, and goals of service recipients themselves.
Effective psychosocial interventions are now available for the full spectrum of mental disorders across the lifespan. In fact, treatment outcomes for mental disorders compare favorably with those for medical conditions, with the following percentages of patients showing improvement following treatment for specific disorders: schizophrenia (60%), obsessive-compulsive disorder (60%), major depression (65%), dysthymic disorder (65%), posttraumatic stress disorder (65%), eating disorder (78%), panic disorder (80%), and bipolar disorder (80%) (Keith & Matthews, 1993).
One important development is the availability of psychosocial interventions that, when combined with medication, can improve the long-term outcomes for schizophrenia and other serious mental disorders. Controlled research on these interventions suggests specific benefits in the areas of relapse and rehospitalization, housing stability, competitive employment, social functioning, psychotic symptoms, and substance use disorders (Mueser, Bond, & Drake, 2001). Effective psychosocial interventions for schizophrenia that can be delivered by psychologists and other providers include: (a) Assertive Community Treatment that offers services in the community, on a 24-hour basis, by a multidisciplinary treatment team; (b) supported employment that assists patients to obtain and maintain jobs at competitive wages in normal work settings; (c) training in social skills and illness management; (d) cognitive interventions that help patients cope with persistent symptoms and with limitations in attention, memory, and other cognitive functions; (e) integrated treatment for co-occurring substance use disorders; and (f) family psychoeducation designed to reduce the patient's risk of relapse and rehospitalization and to address the needs of families themselves.
Similarly, effective psychosocial and psychopharmacological interventions are available for the disorders of childhood and adolescence, with treatment outcomes comparable to those of adults (see Marsh & Fristad, 2002). For instance, behavior modification and stimulant medication are the two evidence-based treatments for ADHD, and they are generally more effective in combination. Given the risk of significant impairment and of negative long-term outcomes, a comprehensive and sustained treatment plan may include home- and school-based interventions, strategies to improve peer relations, and stimulant medication (Fabiano & Pelham, 2002). In a special issue of the Journal of Clinical Child Psychology (Lonigan & Elbert, 1998), psychologists summarized the conclusions of a task force charged with defining and identifying specific evidence-based interventions for children with particular disorders. Task force members identified a number of “well-established” or “probably efficacious” interventions for a given disorder. Concluding that there is a strong rationale for considering these interventions as treatments of choice for specific disorders, they also emphasized that more work is needed to close the gap between research and practice.
Effective psychosocial interventions are also available for older adults with mental disorders (Gatz et al., 1998; Pinquart & Sorenson, 2001). Geropsychologists have played a major role in identifying older patients with these disorders, in distinguishing between the dementias and other mental disorders, and in differentiating between symptoms and medication side effects. The increased attention to the needs of older adults with mental disorders marks the emergence of truly lifespan mental health care for all Americans.
For a variety of social and systemic reasons, our knowledge of what works with these patients and with these disorders is not always translated into clinical practice. A case in point is family psychoeducation, which has documented clinical, social, family, and economic benefits for a range of disorders, including schizophrenia (Falloon, Roncone, Held, Coverdale, & Laidlaw, 2002). Yet fewer than 10% of families of patients with schizophrenia receive even minimal educational and supportive services in the United States (Lehman et al., 1998). Another case in point is the treatment of ADHD. Although behavioral interventions are well-validated and highly effective treatments for reducing behavior problems and functional impairment (Fabiano & Pelham, 2002), too often these young patients receive only stimulant medication.
Given the devastating impact on all members of the family, it is also important to address the specific needs of parents, spouses, siblings, and offspring of people with mental disorders (Marsh, 1998, 2001). It is also essential to meet the needs of parents who have mental disorders themselves, and whose children are at-risk for a wide range of negative outcomes (Weisz & Jensen, 1999). Family-focused interventions can strengthen and support these families under conditions of severe stress, with potential benefits for service recipients, their family members, providers, and society.
Evidence-based treatments are those for which there is scientific evidence consistently showing that they improve patient outcomes (Drake et al., 2001). Although it is essential to increase the dissemination of evidence-based interventions and to train providers in their delivery, it is important to avoid an exclusive emphasis on the interventions that currently meet the criteria for evidence-based treatment (APA, 2000; Levant, Tolan, & Dodgen, 2002; Lonigan & Elbert, 1998). Problems associated with a narrow evidence-based approach include the need to ensure clinical utility (the applicability, feasibility, and usefulness of interventions in particular settings and with diverse populations); the need to acknowledge the value of various kinds of evidence; the emphasis on measures of symptoms and diagnostic criteria rather than on meaningful changes in everyday life; the availability of promising treatments that do not yet meet more stringent scientific criteria; and a host of questions about what actually works and why it works. Further, there is little recognition of the value of innovative services that are offered by consumers and by families.
Although this growing arsenal of effective treatments is cause for optimism, these interventions do not always reach those who need them (e.g., Drake et al., 2001). Indeed, as reported in the Surgeon General's Report (USDHHS, 1999), a majority of people with a diagnosable mental disorder are receiving no treatment at all. As noted in a recent review (Ringeisen & Hoagwood, 2002), many families never access mental health services for their children. Families who do recognize their child's mental health problem may wait several years before they seek or receive such services, and many families terminate services prematurely, often after one or two sessions. Moreover, children and adolescents who are especially vulnerable—those who reside with single mothers, who are living in poverty, who come from ethnic minority families, or who have the most serious mental health problems—are less likely to remain in treatment past the first session and more likely to discontinue services prematurely. Additional problems include inadequate recognition of mental health problems and referral for treatment in such gate-keeping venues as schools, primary healthcare settings, senior centers, and long-term care facilities, as well as the absence of reimbursement for such essential services as prevention, consultation, and family interventions, despite the empirical support for their effectiveness. This lack of satisfactory--or indeed, any--treatment has devastating consequences for these individuals, for their families, and for society at large.
In light of the increasing cultural, ethnic, and linguistic diversity in the United States, a culturally competent system of care is needed that can provide appropriate services to children, adolescents, and families of all cultures. As noted in the Surgeon General's Report (USDHHS, 1999), cultural differences often exacerbate the general problem of access to appropriate mental health services. Moreover, culturally sensitive services are not widely available. Thus, it is not surprising that ethnic minority parents are far less likely than other parents to seek assistance for their children from professionals and agencies. When ethnic minority families do receive professional services, they may find these services incongruent with their cultural worldview, insensitive to their concerns, and unresponsive to their needs (Dixon, 2002). Compounding these problems are racial, ethnic, and economic disparities in insurance coverage and treatment (Goldman, 2000).
Merely promoting the availability of appropriate and effective treatments, however, will not provide meaningful access to care. We must first ensure that all people with diagnosed mental disorders and their families will no longer be devastated by the financial costs of treatment. This can be achieved in part by passage of full mental health parity legislation to end the widespread discrimination in health insurance coverage for mental disorders. People with diagnosed mental disorders need and deserve the protection of parity that will provide mental health coverage equal to that provided for medical and surgical care. Full parity is essential for all aspects of coverage, including day and annual visit limits, other limits on duration or scope of treatment, deductibles, copayments, maximum out-of-pocket limits, and other cost-sharing requirements. Among other benefits, full parity will reduce disincentives to seeking early treatment, which is likely to decrease the severity of the disorder and improve long-term outcome. Similar changes also need to be implemented in federal health insurance programs, such as Medicare and Medicaid.
Systems of Care
People of all ages with mental disorders often have problems in multiple functional domains and accordingly require services from several systems. Depending on their circumstances, individuals may need a range of mental health, physical health, educational, child welfare, juvenile justice, social, vocational, recreational, substance abuse, and residential services. Reflecting the need for cross-systems coordination and collaboration, there has been increasing emphasis on systems of care and on the characteristics that describe effective systems. As defined by the Center for Mental Health Services (CMHS, 2002b), a system of care is a wide range of mental health and related services and supports organized to work together to provide care. The goal is to help people with mental disorders get the services they need in or near their home and community. In systems of care, local public and private organizations work in teams to plan and implement a tailored set of services designed to meet each individual's physical, emotional, social, educational, and family needs.
Cross-systems coordination and collaboration are facilitated by the formation of multidisciplinary and interagency teams that work with individuals and their families as partners when developing a service plan and making decisions affecting care. Teams include family advocates (in the case of children and adolescents) and may consist of representatives from other organizations. They find and build upon the strengths of the person and the family, rather than focusing solely on their problems. A system of care must be driven by the needs and preferences of the individual and family; offer comprehensive, individualized, and flexible services; and embody a community-based, linguistically and culturally competent, developmentally appropriate, geographically accessible, and multisystemic approach. Clearly, an effective system requires synergy among the worlds of system builders, clinicians, and researchers (Goldman, 2000).
Systems of care can promote many positive outcomes (CMHS, 2002a). For example, research findings suggest that effective systems of care for children and adolescents reduce the number of costly hospital and out-of-home residential treatment placements; improve their behavior and emotional functioning; improve their school performance; reduce violations of the law; and provide services to more young people and families who need them.
Person-centered outcomes are increasingly couched in terms of recovery, which is arguably the hallmark of effective treatment and rehabilitation. Our understanding of the recovery process comes primarily from the personal accounts of people with mental disorders themselves. Recovery has been described as a “journey of the heart” that does not necessarily mean cure; rather, it is an attitude, a stance, and a way of approaching the day's challenges (Deegan, 1997a). Based on the literature of personal accounts and the relatively few empirical studies available, it is clear that recovery is a process, not an outcome. Namely, recovery involves a way of living that allows individuals to move beyond the disorder in creating a meaningful and satisfying life. Placed in perspective, the mental disorder becomes simply one life experience that neither defines individuals nor places artificial limits on their lives.
Recovery is often associated with empowerment, a transformational experience that involves reclaiming, redefining, and rebuilding one's life in the wake of mental illness. The current recovery zeitgeist is realistically grounded in an expanding body of research findings. For example, recovery from serious mental illness, once thought impossible, has consistently been documented in long-term studies (e.g., Harding, Zubin, & Strauss, 1992). In fact, at least one half of those who are diagnosed with schizophrenia can be expected to achieve recovery or significant improvement (Torrey, 2001). Recovery is also manifested in the productive lives of an increasing number of recovered and recovering people who are open about their experience.
For many individuals and families, the most oppressive burden associated with mental disorders is the stigma that accompanies such a diagnosis in our society. Stigma results in the marginalization and ostracism of people with mental disorders; in discrimination in housing, employment, and insurance; in an adverse impact on all aspects of functioning; and in decreased likelihood that they will receive treatment. Often internalized by individuals and their families, negative social attitudes and expectations may result in a debilitating sense of hopelessness and helplessness, lowered self-esteem, damaged family relationships, and feelings of isolation and shame (Lefley, 1996).
Many individuals and advocacy organizations are working assertively to counteract stigma and eliminate discrimination. Effective strategies include efforts to educate the public and the media about mental disorders. Examples of effective strategies include: APA's partnerships with MTV on the youth antiviolence "Warning Signs" program, which includes a national grassroots campaign that has reached thousands of schools and community groups; with the National Association for the Education of Young Children and the Advertising Council, Inc., targeting parents and those who work with young children to prevent violence and create safe environments for children; and with Discovery Health TV in a new campaign that will be teaching skills for enhancing resilience.
Responsibility for the administration, funding, and oversight of our nation's mental health system overwhelmingly falls within the purview of the states. Yet, the role of the federal government is critical in providing national leadership and direct financial support through such programs as Medicare, Medicaid, and the Community Mental Health Services Performance Partnership Block Grant. Accordingly, the following recommendations to improve our nation's mental health system have implications for changes at the federal, state, and local levels. They specifically address the three policy areas raised for consideration in the invitation received by the American Psychological Association to present testimony to the Commission:
Encourage the Use of Effective Treatments and Services
Support Basic and Applied Research. Increase federal funding for basic research to shed light on critical processes underlying mental disorders and for applied research to develop and evaluate the full range of prevention, early intervention, and treatment strategies, including psychotherapeutic and psychopharmacological approaches. Such research should encompass “real world” concerns and applications, for example, by including individuals in study samples from special populations, such as children, the elderly, people of color, and those with co-occurring mental health and/or substance abuse disorders, and by expanding the use of samples from clinical settings. Collaboration between researchers and front-line treatment providers should be pursued to enhance the clinical utility of research findings.
Promote Information Dissemination. Embark on outreach efforts to inform mental health providers about the latest effective interventions, with increased emphasis on community-based treatment; cultural competence and related approaches for reducing racial/ethnic disparities in access, treatment, and outcomes; recovery; and administration of multiple, integrated, and interdisciplinary services, including primary health and mental health care. This could be accomplished in part through on-line journals, Web sites, curriculum renewal in graduate programs, professional meetings, and continuing education programs.
Further Interagency Collaboration. Continue to promote collaboration between research and service agencies in the federal government, most notably the National Institutes of Health and the Substance Abuse and Mental Health Services Administration.
Enhance Opportunities for Professional Training
Invest in Human Resource Development. Increase the nation's mental health workforce through federal support for graduate students to specialize in working with vulnerable populations (e.g., children, the elderly, racial and ethnic minorities, and individuals who have co-occurring conditions or chronic physical disorders, including HIV/AIDS and cancer). This could be accomplished by offering training grants to graduate programs, along with stipends, scholarships, and loan repayment programs for graduate students.
Promote Workforce Diversity. Provide federal funding for such initiatives as the Minority Fellowship Program to encourage and support racial and ethnic minorities and multilingual individuals to pursue graduate education in the mental health field to help address the mental health needs of our increasingly diverse population.
Expand Interdisciplinary Training. Opportunities should be made available in graduate, post-graduate, and continuing education programs to learn about other mental health disciplines and professions to better understand their respective training and differing perspectives. This would include increased training and encouragement for primary care providers to screen children, adolescents, and adults for mental health problems (including depression) on a routine basis and to refer to treatment those individuals in need.
Improve Coordination Among Service Providers
Increase Cross-Systems Collaboration. Develop linkages between and among the mental health system and the health, substance abuse, education, recreation, child welfare/social services, justice, housing, and vocational rehabilitation systems, among others. Interagency collaboration should include consumer and family involvement across community and inpatient/residential settings.
Implement Flexible Funding Mechanisms. Intermingling of funds should occur within and across agencies at the federal, state, and local levels to promote collaboration among mental health and other professionals and offer a range of prevention initiatives and individualized, integrated treatment services.
Encourage Facilitative Policy Changes. Establish cross-agency management teams at all key levels to identify and address conflicts and barriers to collaboration and ensure adequate staffing allocations for training, service delivery, and ongoing collaboration to decide upon goals and strategy, monitor client progress, and provide for consumer and family involvement. Develop interagency agreements at state and local levels to address critical issues, such as confidentiality of client information and records, together with attention to respective agency/professional roles in initiating treatment, identifying alternative community resources, and obtaining/providing emergency care, when needed.
Improve the Ability of Adults and Children with Mental Disorders to Become Integrated in the Community
Improve Mental Health Outreach/Intervention. Enhance early identification, referral, and treatment services for individuals with mental disorders through outreach to schools, primary care, senior centers, and other community settings. Targeted interventions should focus on promoting resilience, self-sufficiency, and quality of life, as well as symptom alleviation, with recovery as the goal.
Achieve Full Parity. To ensure access to treatment for all people with mental disorders, there should be full parity for mental health services in both private and public (i.e., Medicare and Medicaid) health insurance coverage. Concerted efforts need to be undertaken to educate the public about mental disorders to eliminate stigma and discrimination and reduce barriers to access these services.
Implement Systems of Care. The system of care model should drive the service delivery system to ensure that it is person-centered, family-focused, community-based, developmentally appropriate, linguistically and culturally competent, and geographically accessible. Networks of mental health and other community services need to be developed, which include provisions for children of parents in treatment and support for caregivers of older adults (e.g., on-site or community-based care).
Expand Federal Mental Health Programs. Vital federal programs offering support to the states, such as the Community Mental Health Services Performance Partnership Block Grant and Medicaid, with its Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program, and the Individuals with Disabilities Education Act, need to be fully implemented and expanded. Middle-income families should be able to "buy into" the Medicaid program to secure needed mental health treatment for their children with serious mental and/or physical disorders. Efforts should also be made to ensure the development of consistent Medicare local medical review policies for mental health services across insurance carriers.
On behalf of the American Psychological Association, I thank you for your consideration and for your efforts to improve our nation's mental health service delivery system. We stand ready to assist you in this valiant endeavor.
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