Summary of the Second Meeting
Hilton Hotel, Gaithersburg, MD
January 15 – 16, 1998
DAY TWO: SURGEON GENERAL'S REPORT ON MENTAL HEALTH
Facilitator John Gates, Ph.D., opened the session by stating the day's goals: to discuss the Surgeon General's Report, to tap into the TA Centers' expertise, and to explore ways the TA Centers might contribute to the report. He then introduced Thomas Bornemann, Ed.D., Deputy Director of the Center for Mental Health Services (CMHS), and Patricia Rye, J.D., M.S.W., CMHS Special Assistant to the Office of the Director. Dr. Bornemann is taking the lead for CMHS on the Surgeon General's Report on Mental Health, and Ms. Rye is assuming the role of managing editor.
Dr. Bornemann told the audience that this is the first Surgeon General's Report on mental health. It has enormous potential for getting a public health message to the entire nation in a way that fosters positive change. The impetus for the report came from Vice President Gore. The Vice President was impressed by the Surgeon General's Report on Physical Activity and Health, released in conjunction with the Atlanta Olympics, and suggested a similar report on mental health. Department of Health and Human Services Secretary Donna Shalala then assigned formal responsibility for the Surgeon General's Report on Mental Health to the Substance Abuse and Mental Health Services Administration (SAMHSA), giving CMHS the lead.
CMHS is working in full partnership with the National Institute of Mental Health (NIMH) and has also held extensive background meetings with the Centers for Disease Control (CDC). CDC is well-versed in the complicated process of bringing to fruition reports from the Surgeon General. CDC has the most expertise among Public Health Service agencies in producing such reports and is playing a critical role in familiarizing CMHS with the mechanics, structure, and format of reports from the Surgeon General.
Ms. Rye noted that there have been very few major reports, such as the smoking and health series, the one on AIDS, and the recent physical activity report, by the Surgeon General. Typically, Surgeon Generals hold workshops to generate small reports on topics of interest to them. Large reports, such as the one underway on mental health, carry a certain authority and are released with a great deal of media attention.
CMHS views the TA Centers as a wealth of information and support for the Surgeon General's Report on Mental Health and will include the TA Centers in the report's development whenever possible. For example, the TA Centers may be able to identify appropriate contributors for the section of the report that deals with services.
An overarching goal of this Surgeon General's Report is to present information that normalizes the topic of mental health and mental illness. Ms. Rye noted that mental health is not a topic that most people want to think about. And when they do, they tend to think in terms of sensational or tragic incidents where mental illness may have played a role. Given the important and unique opportunity presented by the Surgeon General's Report on Mental Health, it is imperative to provide a broad public health message.
Vice President Gore suggested the idea of this report to Secretary Shalala during the summer Olympics in 1996, and the report was commissioned in September 1997. Framing the report so it would meet the Surgeon General's expectations and negotiating with SAMHSA and NIMH required time and finesse.
Now that the report's overall goals have been agreed upon, the agencies are ready to move ahead on the nuts and bolts. The next step is to create a planning board comprised of no more than 30 federal and non-federal members. Approximately 15 non-federal members will be on the board. Three to four will be consumers of mental health services from the field. Consumer organizations will also be represented. At least one TA Center will be represented. Planning board members will convene to offer their expertise and to help annotate a working draft outline, which has been approved by the Secretary.
As the report is developed, information will be available on SAMHSA's National Mental Health Information Center Web site. Howard Goldman, M.D., Ph.D., has agreed to take on the responsibility of senior scientific editor. Dr. Goldman is an authority on services research, has edited psychiatric texts, and has worked with NIMH and CMHS.
Following approval of the annotated outline, contributors will be selected. They will pull together information and do the actual writing of the report based on the annotated outline, a specified format, and a style sheet. The TA Centers will be consulted to either serve as contributors or to identify appropriate contributors.
Although the contributors will do the actual writing, the Surgeon General is still the author of the report. Ms. Rye pointed out that once the report is published, contributors may not recognize their submissions. CMHS will be in constant contact with the contributors during the writing phase of the report and they will meet together. The projected release date for the report is Fall 1999 or early 2000.
Report sections will be compiled into a working draft for peer review. Five to ten peer reviewers will read and comment on each section of the report, with the goal of producing an initial draft for clearance in early Spring 1999.
CMHS is taking steps to hasten the clearance process and prevent delays by involving reviewers early in the process. Federal members of the planning board will be selected based on their potential interest in the content of the report.
The report will cover neuroscience, genetic research, service delivery, innovation, and the role of families, consumers, communities, and culture. It will be structured along developmental lines with an eye toward balancing research, services, and people.
Following Ms. Rye's presentation on the Surgeon General's Report on Mental Health, participants introduced themselves, briefly described their TA Centers' expertise, and suggested possible ways for the TA Centers to contribute to the report.
Ed DeBerri of the National Resource Center on Homelessness and Mental Illness noted that the TA Center has identified outreach, case management, and supported housing as three critical services for helping people with mental illness. He also mentioned the importance of integrated service systems. The TA Center maintains the largest library on homelessness, and contributors to the Surgeon General's report are encouraged to contact the TA Center for information.
Krista Kutash of the Research and Training Center for Children's Mental Health identified early diagnosis as an important topic, especially in cases where multiple diagnoses are present. In addition, diagnostic categories are different for 5 to 8-year-olds than for adolescents between 15 and 17 years of age. Treatment services and supports also vary widely and include office-based treatment, community-based, interagency treatment, and family support.
Ms. Rye asked if the Research and Training Center for Children's Mental Health would provide contributors to the report who have knowledge of the most current research on topics such as early identification and the consequences of delayed identification. She mentioned that there may be three or four contributors for this section.
Morton Wagenfeld reported that Frontier Mental Health Services Research Network is focused on presenting a picture of the lowest density population group in the country. Frontier has expertise in measuring demand, access, availability, and need for services.
James Winarski talked about Advocates for Human Potential. This TA Center, which offers technical assistance to the PATH program, provides outreach to homeless people with mental illnesses. Since the center already works with the National Resource Center on Homelessness and Mental Illness, it makes sense to be a contributor to the Surgeon General's Report on Mental Health. Mr. Winarski suggested three topics for the report: poverty and the disproportionate representation of people with mental health problems among the very poor, vulnerability of people with mental illness to disease and public health issues, and stigma and disaffiliation. Mr. Winarski noted that disaffiliation is not only from the mainstream culture, but also from mainstream mental health and public health institutions.
Marie Verna, representing Joseph Rogers of the National Mental Health Consumers' Self-Help Clearinghouse, noted that, as the name implies, this TA Center's primary concern is self-help as a valid, viable service. Ms. Verna suggested that the TA Center can contribute a comprehensive understanding and current research on the status of self-help in this country. She underscored the importance of self-help by asserting that it should be recognized in both managed care and health reform policy.
The National Empowerment Center is the other TA Center run by consumers of mental health services. Daniel Fisher, the TA Center's executive director, stated that the Empowerment Center can provide contributors, help to select planning board members, and offer peer reviewers. He emphasized the critical need to include consumers/survivors at the peer review level. Dr. Fisher made an argument for presenting information for and about consumers in a seamless way throughout the report, rather than creating a separate section. He also noted the challenge of integrating neuroscience and services research, since the two branches have been divided historically, and expressed a willingness to help in this area.
Consumers/survivors can best contribute to the report, Dr. Fisher said, by answering basic questions such as what "self-help" means, why it is important, and why professionals can't do it all. He suggested including the role of consumer/survivors in developing service delivery systems, supported housing, supported employment, and policy. Dr. Fisher also recommended that the factors involved in recovery from mental illness, such as self-help, coping strategies, holistic health, and exercise, be part of the report's prevention section and also be tied to the Surgeon General's Report on physical fitness.
Ms. Rye responded that the entire report, except for financing and policy, will be integrated, rather than split into separate sections. A separate section on financing will discuss topics such as managed care and parity, and a separate policy section will delve into issues such as confidentiality.
Joan Dodge of the National Technical Assistance Center for Children's Mental Health made some general comments regarding the importance of including family consumers and people who represent children on the planning committee. She also expressed the need to address the transition between adolescence and young adulthood.
Vicki Smith talked about the Advocacy Training and Technical Assistance Center (ATTAC), which provides technical assistance to 57 Federally-mandated protection and advocacy (P & A) programs for all people with disabilities. One ATTAC program is the Protection and Advocacy for Individuals with Mental Illness, funded through CMHS, which focuses on institutionalized persons with a psychiatric label. Other components of ATTAC also assist persons with psychiatric labels living in the community who don't require overnight care. When P & A's investigate abuse and neglect, they also attempt to ameliorate the effects of abusive and neglectful service delivery systems. Ms. Smith recommended that the report look at the rights of consumers and other guarantees to consumer-driven services.
Ms. Rye responded by saying that the report will not make recommendations and will not present a call to action. It will make conclusions about what is known, what works, and what standards and research exist.
Given the limitations of the report, Ms. Smith commented on the critical need to address the impact of poor quality services on people with psychiatric disabilities Reports such as these too often highlight the positive with the hope that readers will make the leap to believing it is reality. If the report does not address what happens to people when situations are bad, it will be a disservice to those who use mental health services.
Ms. Rye acknowledged the importance of Ms. Smith's comments and noted that the report will focus on helping the general public understand that situations can be improved.
One participant asked whether the report will reveal the need for more research in specific areas such as self-help. Ms. Rye said that the report will most likely refer to an evolving, little-researched self-help movement in the mental health field that shows promise. The report will not conclude that more money should be appropriated for self-help research or any other topic.
Discussion was held on the distinction between promising practices and best practices and problems with much of applied services research, such as small sample sizes and a lack of control groups. Ms. Rye reinforced the need to draw the line between anecdotes and what is known in a demonstrable way.
Kaye Expo reported on the Research and Training Center on Family Support and Children's Mental Health Services, a center that focuses on family participation in services and family-centered research in children's mental health. The TA Center could provide contributors for the report based on its recent experience at co-editing two issues of the Journal on Emotional Behavior Disorders. In addition, the TA Center's current research on family participation in services and policy-making in mental health settings could provide useful background for the Surgeon General's Report. The TA Center also offers valuable experience in the areas of evaluating the state-wide family support organization and the impact of caring for children with disabilities on parents' employment.
Lawrence Woocher talked about the Evaluation Center at Human Services Research Institute, which was funded by CMHS to serve as a national technical assistance center for the evaluation of adult mental health systems change. This TA Center has expertise in state-of-the-art methodology, research design, implementation, and analytic strategies for evaluating mental health services and systems. Mr. Woocher suggested that the comprehensive packages of literature on evaluations compiled by the TA Center could be extremely useful for the Surgeon General's report. The TA Center could provide a wealth of journal citations to demonstrate that people with severe mental illnesses are dying younger and at higher rates from common causes of death such as heart disease and cancer.
Jessica Jonikas from the Research and Training Center on Psychiatric Disability raised the political "hot potato" of the role of abuse and violence across the life span in mental health and mental illness. While 50 to 65 percent of people in the public mental health system have experienced violence, she asserted, including this information in the report may cause conflict with the family movement. Ms. Jonikas mentioned a recent report by the TA Center on outcomes research services commissioned by the National Institute on Drug Addiction (NIDA). She offered to share it with NIDA's permission. Ms. Jonikas also brought up the challenge of creating public understanding of topics such as work, housing, and poverty in the context of brain disorders.
Ms. Rye asked for additional comments. Irene Lynch, not formally affiliated with a TA Center, raised the importance of balancing the views on psychiatric treatments, the value of real work for fair wages, and the newly emerging role of the Internet as a self-help tool. Another member of the public remarked that the TA Center meeting was a welcome step in giving mental health its rightful place in the larger public health arena.
Dr. Gates thanked the participants and adjourned the meeting.
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