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CMHS National Advisory Council
Meeting Minutes

U.S. Department of Health and Human Services
Substance Abuse and Mental Health Services Administration
Center for Mental Health Services

NINETH MEETING
CENTER FOR MENTAL HEALTH SERVICES
NATIONAL ADVISORY COUNCIL MEETING MINUTES

Doubletree Hotel at Pentagon City
The Wilson Room
300 Army-Navy Drive
Arlington, Virginia

April 10 and 11, 1997

Council Members Present:

Council Members Absent:

Guest Speakers:

CMHS Staff:

Minutes From the Center for Mental Health Services
National Advisory Council Meeting
April 10 and 11, 1997

Day 1 - April 10, 1997
Welcome and Director's Report

Bernard S. Arons, M.D., Director, Center for Mental Health Services (CMHS), called the meeting to order, welcoming all CMHS National Advisory Council Members, CMHS and Substance Abuse and Mental Health Services Administration (SAMHSA) staff, speakers, and the public.

After a brief overview of the agenda, he announced that Anne Mathews-Younes, Ed.D., who served as executive secretary for the Council for 2 years, was appointed chief of the State Planning and Systems Development Branch (SPSDB). Dr. Arons presented Dr. Mathews-Younes with a plaque. Mrs. Ina Lyons will be Executive Secretary and Ms. Patricia Gratton, Committee Management Officer.

The central theme of Dr. Arons' presentation was the knowledge development and application (KDA) program. The goal of the KDA program, Dr. Arons explained, is to demonstrate effective ways to design, finance, and provide mental health services. CMHS is now seeking grant applications for projects that range from systems integration, to managed care, to jail-based services.

CMHS will consider and describe the policy implications of the KDA grantee findings to Federal, State, and local policymakers who may use the information to guide public policy decisionmaking. CMHS plans to show its partners, professional associations, and consumer organizations how to use the information to enhance their work.

Dr. Arons briefed the Council about the remarks made by SAMHSA Administrator Nelba Chavez, Ph.D., before the House Subcommittee on Health and Environment on SAMHSA's reauthorization. In the past, the appropriations committee would not appropriate money without authorization; the appropriations committee no longer requires this, which enables SAMHSA to operate under its previous authorization.

Reauthorization will present an opportunity to redefine block grants into performance partnership grants (PPGs). The concept of the PPGs is based on four core principles: To work with State and local governments as partners and to share expectations about program outcomes; to emphasize outcomes; to give States and communities the flexibility they need to adjust programs to their needs; and, to provide Federal leadership and resources to help States manage programs effectively. Through PPGs, CMHS would continue to provide Federal leadership and the core resources to help States manage programs effectively.

Three SAMHSA priorities for the knowledge development component of the KDA program are managed care, early childhood problems in working families, and improved community services. Similarly, the priorities for knowledge application are changing systems and practices, and developing standards and guidelines.

Dr. Arons also noted that CMHS continues to promote policies that include consumers in the development of projects "from concept to conclusion" and to plan effective ways to communicate with consumers.

In a brief discussion on the President's budget, Dr. Arons lauded the Administration's commitment to improving the mental health care system. The proposed 1998 budget, which increased CMHS funding by almost $100,000 from its 1997 funding level, maintains the current Federal support to community and State mental health systems, and continues funding for the important set of KDA grants that address some of today's most challenging issues in mental health services. CMHS' FTE ceiling will be 124 for fiscal years 1997 and 1998.

Outcome measures were the first topic to emerge in the discussion following Dr. Arons' presentation. David K. Yamakawa, J.D., asked whether the Council would be able to review and discuss the proposed outcomes for the PPGs before CMHS negotiates their implementation with States. Dr. Arons responded that it would.

Thomas B. Horvath, M.D., expressed concern that there is a great deal of activity from many quarters to develop outcome measures, especially given the pressures of managed care. He emphasized the need for a standard set of outcome measures for public and private mental health systems.

Dr. Arons mentioned a recent study from the National Academy of Sciences in which several regional meetings were held to develop a list of possible outcome measures for States to use in measuring the success of their programs in mental health services and substance abuse. He noted that the pressure to measure outcomes is also the result of the Government Performance and Results Act (GPRA). Success will be judged by the ability to measure outcomes.

Marshall Forstein, M.D., expressed his apprehension that with the push to develop outcome measures, resources will be restricted to what can be defined as a biological disorder. Such a limited definition would prevent people who could benefit from mental health services, such as emotional support or counseling, from accessing them and have long-range implications for future generations. He added that when the parity issue returns to the House floor, "We will see a dramatic polarization within the mental health community."

Floyd H. Martinez, Ph.D., noted that because the capacity to conduct outcome measures is in its infancy, there is the risk of focusing only on things that can be measured, which may not necessarily be important. He cautioned against a universal set of measures, which would not capture the diversity of the mental health field in its clinical, cultural, and political environments.

Daniel H. Gottlieb, Ph.D., remarked that it is important to focus on mental health, rather than mental illness. A focus on mental illness, he stated, considers only symptom change - not the entire person.

Dr. Horvath expressed his concerns about any proposed outcome measures. He indicated that measures should be brought to the Council for discussion.

Dr. Martinez reiterated his concern that the capacity to measure in this broad, diverse field is still in its infancy. He pointed out that many systems may not be ready to use the information captured by what is measured. What will we do with the outcomes? Do elected officials listen to outcome data? Will a reasonably rational measurement process affect irrational decisionmaking machinery?

Randall Feltman, M.S.W., then turned the discussion to questions about congressional, White House, and other support for SAMHSA. Dr. Arons suggested discussing a vision of outcomes and processes underway in a future Council meeting. Such a meeting could lead to a formal statement from the Council outlining its vision for mental health outcomes. The statement could then be given to the Secretary of Health and Human Services (HHS), he added.

He described some SAMHSA successes in the first 5 years, such as collaborative activities with other agencies. He added, however, that CMHS must push to make others aware of its work, to become known as a source of expertise, whether it is the staff itself, or the people we invest in, the grantees, the contractors. CMHS invests not just in products or grant activities; it invests in expertise.

Dr. Arons stated that in addition to the expertise CMHS has provided in outcomes work, it must continue to play a critical role in moving the system forward-getting people the services that we know are effective. Furthermore, CMHS must get information to the field, where it can be put into practice.

CMHS hopes to be assigned the task of developing a Surgeon General's report on mental health, which would be an opportunity to focus the Nation on what, exactly, mental health services mean.

As for the question of which members of Congress support SAMHSA or CMHS, Dr. Arons remarked that it is not clear where the leadership on mental health is arising. Senators Paul Wellstone and Pete Domenici are advocates for consumers of mental health services and their families.

Dr. Arons closed this part of the discussion by announcing CMHS staff changes. Agenda Item: Changes in Review Procedures - Jane Taylor, Ph.D.

Dr. Jane Taylor, director of SAMHSA's Office of Extramural Activities and Review (OEAR), discussed changes in the review process. A written summary of the review process, including a detailed description of the process and changes implemented was distributed to Council members.

Dr. Taylor explained that a new framework for the recommendations from initial review groups (IRGs) is in place. The IRGs will no longer use the terms "approval and disapproval," but will use "scored and unscored." Those applications deemed to have substantial and significant merit will be scored, and each member of the IRG will assign it a score; applications that lack significant and substantial merit will be unscored. Unscored applications will receive a summary statement indicating an unscored recommendation. Dr. Taylor described the review criteria to be used in evaluating and scoring applications.

The Council posed questions about the amount of time between the grant announcement and the submission deadline. Dr. Forstein stated that this period is often very short - sometimes applicants have only 60 days to respond. Dr. Forstein asked whether this period can be extended. Dr. Horvath asked about the length of time between the arrival of proposals at OEAR and the grant awards announcement.

Dr. Taylor remarked that all SAMHSA Centers are trying to streamline the grant announcement process, and to release them in a more staggered manner. She reviewed the process from concept to grant announcement release. The aim is to have a 90-day turnaround for application receipt, but that often is only 60 days.

SAMHSA grants are received at the Division of Research Grants (DRG) at the National Institutes of Health (NIH). It can take a week to 10 days to get the grants through DRG and another 1 or 2 weeks to make in-house copies. It can take as many as 2 additional weeks to send the review packages to reviewers, who have 3 weeks to review the grant applications and who then meet for 1 to 5 days to discuss the reviews. Summary statements are developed within 4 weeks.

Dr. Arons stated that no matter how early CMHS starts to develop grant ideas, it still finds itself in a time crunch; the Center is trying to improve the process to give applicants more time to respond to grant announcements.

Elisabeth Rukeyser asked whether the Council will receive information about the number of applications that were deemed "unscorable." Dr. Taylor answered that she will give the Council a report on how many applications were received, how many were ineligible at receipt, and how many were unscored and scored.

Steven P. Shon, M.D., asked whether CMHS has a way to inform people about the grant announcement concepts being developed. Dr. Taylor stated that this information is included in the President's budget. Dr. Arons said that he would ask Curtis R. Austin, Director of the CMHS Office of External Liaison, to highlight this information in announcements to journals and trade publications. The information cannot be detailed, Dr. Taylor said.

Agenda Item: Environmental Scan: Role of the States - Robert Glover, Ph.D.

Dr. Arons introduced Dr. Robert Glover, Executive Director of the National Association of State Mental Health Program Directors (NASMHPD), to discuss his thoughts on where States are in terms of mental health services delivery. He distributed a slide package to the Council.

Dr. Glover gave an overview of the scope and size of the mental health system, the public sector's place in it, and major changes indicated by 1994 data. Significant facts include:

• 5,392 mental health organizations, of which 3,200, or 60 percent, are funded in full or part by States.
• 260 State, community, and county mental health hospitals; there are now 237.
• 430 residential treatment centers for children and 459 residential treatment services.
• 1,600 general hospitals with separate psychiatric site services.
• 2,662 mental health organizations receive some funds from managed care organizations (MCOs). This figure is up in recent years.
• $37.4 billion total revenues in 1994, of which $23 billion, or 62 percent, is under the authority of the State mental health system, with $7.3 billion of this amount for inpatient services.
• $7.7 billion in revenues from Medicaid to all mental health services.
• 578,000 full-time equivalent (FTE) workers (including all ancillary staff) in the mental health system; 75 percent of these workers were employed or funded by State hospitals or community mental health centers.

In addition, Dr. Glover reported that in 1994, there were 8.1 million episodes of care; of these, almost 6 million were in State-funded or operated programs. Of the 8 million, 2.1 million were in 24-hour inpatient care; of these 2.1 million, 44 percent were in State-operated or funded inpatient facilities. Six million episodes were outpatient - 4.8 million were in State mental health operated or funded, community-based services.

Dr. Glover described the reorganization that has occurred in the States, an integration in which substance abuse and mental health are more integrated, both in managed care and in State departments. Mental health is also being integrated with Medicaid and other human services areas.

Dr. Glover described major changes in funding patterns. In 1981, two-thirds of funding went to State hospitals and one-third to community programs. In 1993, that split was almost 50-50. Some of the community programs, he noted, do include inpatient facilities.

Dr. Forstein asked whether the move toward community mental health services saved absolute dollars and if privatization had an effect on the amount of money spent per capita. Dr. Glover expressed concern that much of the savings realized were not reinvested in the mental health system. As privatization occurred, a parallel, nonprofit system was not developed to reinvest savings into mental health. Even the States, he said, may use savings to offset a revenue shortfall or to build roads.

Dr. Glover reported that several States are considering reinvestment strategies, such as using funds to serve people moved from State hospitals to community-based programs. Some States are trying to create single-stream funding mechanisms to treat children, adolescents, and their families more holistically. However, this approach fails when used to shift responsibility from one agency to another. There is the risk that agencies will simply step aside and deny responsibility.

Dr. Glover presented up-to-date information on the number of States involved with managed care: 16 States are involved in 1115 waivers and 23 States have 1915-B waivers. With welfare reform, the waivers may become unnecessary.

He touched on the forthcoming report on managed care contracts, commissioned by SAMHSA and CMHS. He stated that the report highlights some of the problem areas States encounter when contracting with MCOs. He expressed concern that it has taken years for States to become sophisticated purchasers and, with managed care, States cannot afford years to become savvy. He discussed some of the critical issues around contract negotiation, such as the importance of defining "medical necessity."

He touched on the following important issues:

• Consumer and family involvement in contract negotiations; 33 States have statutes that mandate consumer involvement in boards.
• Consumer involvement in research design.
• Recovery and outcome data from mental health services recipients; 16 States now collect these data and 21 are asking consumers to assess how services helped them achieve their own goals.
• The shift of responsibility from States to counties.
• The effect of managed care on culturally and ethnically appropriate services.
• The failure of States to include specific coverage in MCO contracts for disaster services.
• The need for States to emphasize outcomes and performance measurement?but also the need to assess quality.
• The need to address welfare reform?and the failures that will occur because of it.
• The need to come to grips with the issue of violence and mental illness; although mental illness may lead to violence among a very small portion of the population, States and leaders need to address the issue proactively, rather than addressing it when the issue comes up through media coverage.
• The need to address the relationship between mental illness and sexual or physical abuse, and the subsequent intervention methods used in State facilities. Some of these methods retraumatize people.
• The ongoing issue of insurance parity for mental health.
• The need for States to develop systems of care for children and adolescents with serious emotional disturbances. Only 10 of the 49 NASMHPD respondents have primary responsibility for such services.

Dr. Arons opened the floor for discussion.

The Council raised concerns about the number of people with mental illnesses who are in jails, and whether NASMHPD could measure the effects of changes at all levels of local government on the criminal justice system, which is often the system in which many people with severe mental illness are found. Dr. Glover noted that the largest institution in the country for people with mental illness is, in fact, the Los Angeles County jail. Mr. Feltman reported that these inmates are jailed for misdemeanor crimes. Dr. Martinez stated that on any given day in Portland, 83 people with severe mental illness are in jail; of these, 35 percent have been convicted for crimes against other people.

The Council discussed the relationship between mental illness, substance abuse, and violent crime, including sexual predators. Dr. Gottlieb remarked that attention should be given to people who are violent to see what percentage of these people have severe mental illness.

Dr. Shon stated that many States are struggling with legislatures that are copying elements of other States? laws, some of which would fill hospitals and community centers with rapists and other criminals who do not, in fact, have a mental illness.

Dr. Glover reported that the July meeting of the State commissioners will overlap with a meeting of the States? attorneys group, which is addressing issues surrounding sexual predators.

The Council raised concern about disaster preparedness in the States. Mr. Yamakawa stated that, with the number of disasters occurring right now, States may be getting more involved in planning, rather than reacting. The current system, he said, deals with the Ozzie and Harriets in the country. They are not dealing with the underserved.

Dr. Glover replied that CMHS has been quite active in addressing this issue, and that perhaps Brian Flynn, Director of the Division of Program Development, Special Populations and Projects, could speak to the Council about what has been done. Dr. Arons reported that CMHS conducts an annual training session in which all States participate in disaster preparedness planning.

Dr. Arons asked Dr. Glover to speak about the issue of outcome measurements and performance measures. Dr. Glover stated that NASMHPD?s concerns focused on the problems of having three different agencies at the State level determining what to fund and how to evaluate services. NASMHPD is in the process of gathering data on outcome indicators used by Medicaid, SMHAs, and substance abuse directors to determine if there are some outcome indicators that can be used by all three agencies, and if there are any that the mental health authorities ought to consider using.

Agenda Item:
Presentation and Policy Discussion on Co-Occurring Disorders Treatment
Walter Leginski, Ph.D., and Lawrence Rickards, Ph.D.

Dr. Arons introduced Dr. Walter Leginski, Chief of the CMHS Homeless Programs Branch, and Dr. Lawrence Rickards, Director of the Branch's clinical initiatives. They presented findings from a major project, conducted in collaboration with the Center for Substance Abuse Treatment (CSAT), addressing treatment intervention and services for people with co-occurring disorders who are homeless. He indicated that he would like to hear discussion on the point at which findings should be distributed to the field with recommendations for next steps.

Dr. Leginski asked the Council to recommend ways to proceed with findings on best practices for treating dual diagnosis among homeless people. The findings may extend beyond homeless populations and may be relevant to the fuller issue of treatment for a population with dual diagnoses.

Dr. Leginski reviewed basic information on the scope of the problem of dual diagnosis, then discussed the problem of dual diagnosis among people who are homeless. Of people with severe mental illness, 14 percent report having had at least one night of homelessness, double the rate reported among the general population. In contrast to often-used data indicating that only 10 to 20 percent of people who are homeless have a co-occurring disorder, CMHS has found that this is at least 50 percent. In addition, CMHS studies indicate that among people who are homeless, 30 to 40 percent have an addictive disorder. Dr. Leginski also described the four basic approaches to services configuration for the homeless/dual diagnosis population: sequential, parallel, linked, and integrated.

Dr. Leginski suggested that in terms of policy discussions, those States in which SMHAs share responsibility with alcohol and drug abuse agencies might be a natural audience for the CMHS findings. Some cross-cutting issues, he stated, include determining how comprehensive the services provided are, and whether they reinforce the community-support model or are treatment-specific.

The need to study these models, he reported, led to the collaborative venture with CSAT, in which models were studied to document them and develop manuals about them. The grantees were all interested in documenting and evaluating integrated services and nonintegrated, or treatment-as-usual, approaches.

Dr. Rickards presented specific findings reflecting more than 4 years of work. The Council meeting was the first time any of the final data were presented.

He distributed copies of the slides used in his presentation; the slides summarized program elements, highlights, and conclusions. The program was a 3-year, 2-phase project to document and evaluate treatment interventions. Phase 1 included 16 projects that documented their treatment intervention through the development of minutely detailed programs. Phase 2 funded 6 projects for program evaluation. Dr. Rickards presented preliminary findings from the Phase 2 study; a final report, he said, should be available this summer.

He described common cross-site issues and findings, noting that the study was not a multisite or cross-site evaluation. In four of the six sites, integrated services were superior to other models in terms of results, perhaps because effective treatment requires that other real-life circumstances be addressed. During the course of the study, many projects began to provide housing services; some mental health centers, for example, became housing centers. Substance abuse and mental health symptomatology were reduced.

Dr. Rickards briefly described two projects: the Arapaho House in Thornton, CO, and the Center for Therapeutic Community Research in New York City. Arapaho House used two case managers, one trained in substance abuse and one in mental health, who worked in tandem in outreach, linkage, and program support to link clients to a system of services.

Dr. Rickards highlighted key findings from the Arapaho House for clients who received integrated services, rather than treatment-as-usual approach. Homeless days were reduced by 39 percent; the program increased by 13 days the number of days in the last 60 that clients were housed. A total of 47 percent and 52 percent of participants reduced the number of days they had used alcohol and drugs, respectively. Clients experienced significant improvement on a number of scales for brief symptom improvement, as well as significant improvement in pro-social interaction, family connection, and involvement in community and group processes. Clients had less involvement in illegal behavior or with the criminal justice system. Clients received more hours of actual services; case managers had increased engagement with their clients.

Dr. Rickards gave a similar overview of the Center for Therapeutic Community Research, a residential, therapeutic community that takes a holistic approach to meeting client needs. Clients in the study had lived for 9 to 12 months within the community, sometimes followed by a period of supported housing. He reported that across 16 domains and measures, clients experienced significant improvement, both within the group itself and when compared to 18 months earlier. The treatment-as-usual group had improvements in only six areas.

Before opening the floor to discussion, he gave a few caveats about the study. First, the programs were not compared to one another; thus, conclusions should not be made about which type of integrated intervention is most effective. Dr. Rickards reported that programs were found to be effective, however, within those activities, it is not known which to encourage, relative to other efforts that might be made. In addition, the evaluation period was brief, and the number of subjects was small.

Mr. Yamakawa asked whether follow-up studies were planned or if they had been precluded because of competing priorities. Dr. Arons answered that this decision is one that has yet to be made; we need to think about what more we would learn and whether we are ready to recommend to the field that integrated systems work best for people who are homeless and have co-occurring disorders and, perhaps, for all people who have co-occurring disorders.

Dr. Leginski asked whether the Council thought it was necessary to know, for example, which patterns of substance abuse and which diagnoses of mental illness are linked. He stated that Robert Drake?s research at Dartmouth indicates that an integrated approach is more effective. Therefore, at what point should CMHS make its own recommendations? Dr. Horvath stressed that because integrated systems are clearly most effective, the questions in the field are now focused on the patterns within integrated systems.

Dr. Forstein remarked that the researchers have demonstrated what clinicians have known intuitively for a long time. He felt that several areas might be worth studying:

• How does one encourage people in parallel provider systems to learn how to work in integrated systems?
• How does one train those who are in the field?
• How can one effect change in the training system so that clinicians are trained in dual diagnosis?
• If CMHS does not support services or training, how can the knowledge developed be applied?

Mr. Feltman suggested that data from such studies, which seem to show practical outcomes, "carry financial significance and have political weight." He stated that people working at the local level need this kind of information because it justifies keeping funds that are not categorically protected.

Dr. Gottlieb remarked that clinicians already know that integrated systems work and that it is really more important to be able to explain to administrators and line staff what needs to be done to achieve an integrated system. He added that it is also important to know which aspects of the integrated system work best in taking care of patients.

Mr. Yamakawa said that the need to learn more about critical independent variables, such as how long people remain housed, how long they remain symptom- or drug-free, or which program elements are most effective, can be used as selling points. By knowing the independent variables, he added, local governments will know exactly how to invest scarce resources.

Dr. Martinez asked where and how information, such as this study, is presented and what kinds of action it leads to among groups such as NASMHPD and the National Association of Counties (NACO). He also asked whether any interagency discussion has occurred as a result of the study findings.

Dr. Forstein felt that the best way to get people to actually make the move from knowledge to application was by tying the desired action to Federal dollars. He suggested that mechanisms similar to those contained in the Ryan White Act, requiring that grantees working with HIV patients include a psychiatrist on staff, might be an effective strategy.

Dr. Horvath remarked that the cumbersome Federal clearance process makes it difficult to demonstrate information in a timely manner because the process takes so long. He indicated that this would be brought up at the SAMHSA Council meeting.

Dr. Arons remarked that many providers continue to be unaware of the need to treat co-occurring disorders simultaneously and with an integrated approach. Instead, many continue to treat the addictive disorder first, then the mental illness. He suggested that CMHS should gear some presentations on integrated services for people who are homeless and have co-occurring disorders.

Mr. Yamakawa stated that he viewed some of the suggestions being offered as "the old Federal model," under which Federal models were sent to States with certain requirements or through Federal-level interagency agreements. In this era of devolution, he said, it is more of a marketing problem, of trying to get to the people at the local level who are working on the topic of the homeless, and trying to integrate that into the way communities approach these issues.

Agenda Item: NIMH Update - Steven Hyman, M.D.

Dr. Arons concluded the discussion in order to introduce Steven Hyman, M.D., Director of the National Institute of Mental Health (NIMH). Dr. Arons said that he and Dr. Hyman have been working on ways to collaborate on more projects, especially those that focus on communication.

Dr. Hyman had just come from a conference on victims of torture; this endeavor was a partnership between NIMH and CMHS. He noted that while NIMH focuses primarily on research into brain function, life experience, and functionality in the community, as well as research on psychosocial and pharmacologic and comprehensive treatment, some of its issues BORDER on the service system issues more central to CMHS. In terms of working with victims of torture, he said that solutions can only be addressed cooperatively across agencies, and that he looks forward to this cooperation with CMHS and other SAMHSA centers.

Dr. Hyman indicated that he feels the most important area in which NIMH and CMHS must work together is in equitable coverage in insurance for people with mental disorders. He mentioned that CMHS and NIMH have complementary studies now going on in the areas of parity and managed care. He noted that other issues of concern are primary care, including the limited amount of time primary care providers in managed care have to assess patient symptoms and diagnose mental illness or substance abuse problems. He would also like to make the grantmaking mechanisms to study managed care more flexible. At NIMH, he said, "The two things that are changing fastest in our portfolio are molecular biology and managed care."

He briefly discussed the yet-to-be-released NIMH study of equity and its cost in States where parity laws have been enacted. That study finds that managed care approaches do, indeed, contain costs, and that the equitable coverage of mental illness in managed care does not significantly alter health care premiums.

He said that with numbers indicating that mental health parity is affordable, attention must turn to the question of whether or not equitable coverage will benefit people. Based on a CMHS-funded study by the Institute of Medicine (IOM), we have an intellectual framework within which we can examine what managed care is doing. From that study, he said, has come the idea that organizations must determine which outcomes need to be measured. In this area, he said, he looks forward to each agency working synergistically to produce a set of outcome studies that will allow us to hold the managed care industry accountable.

Dr. Hyman opened the floor to questions and comment. Mr. Feltman asked for an update on the NIMH set-aside for services research. Dr. Hyman said that he objects to the 15-percent set-aside for services research, because that amount becomes not only a goal, but a cap. He reported that he is pleased with the "quality and vigor of our services research community and their scientific capabilities."

He would like to move NIMH services research to examine treatment efficacy in the real world, not in a clinical trial. Such studies have not been undertaken because they are very expensive and the size of the sample population is small. Without such studies, he noted, researchers cannot give providers the information they need to practice, and public officials cannot convince managed care companies on the efficacy of new treatments.

Dr. Forstein asked how Dr. Hyman will bring the clinical and services research together. Dr. Hyman replied that he is reorganizing the NIMH divisional structure so that clinical trials and effectiveness studies will be housed in the same branch. "I am challenging the field to say the real issue - what we really want to do - is to have information that will change the way we practice, the way we treat patients. If we don't do that, we haven't succeeded."

Mr. Feltman asked Dr. Hyman what progress has been made in bringing representatives of The National Alliance on Mental Illness (NAMI) into the NIMH process. Dr. Hyman said consumers have been active in helping him to shape his idea that, in the end, if we are not able to shape practice, we are not doing our jobs.

At the conclusion of Dr. Hyman?s presentation, the group returned to the policy discussion of the homelessness/dual-diagnosis study. Dr. Leginski asked the group to discuss ways to develop knowledge application strategies. Dr. Arons has asked if some existing funding mechanisms, such as the PATH program, might be used to leverage knowledge application activities. "What would be some things that CMHS could do in the knowledge application area that would help you implement new practices?" Dr. Leginski asked.

Dr. Shon remarked that the issue is about system change, rather than simply reaching individual providers. He noted that recent reports on the effectiveness of medical education at conferences indicate that it is very poor in actually changing behavior and practices. With systems, then, the process is even more difficult. Based on his experience with Assertive Community Treatment (ACT) and supported housing in Texas, Dr. Shon said the most effective way to bring about change was to encourage stakeholders to buy into the programs that were beneficial for individuals, families, and communities. The stakeholders, then, drove the systems change. "It is just amazing the kinds of things that they were able to push their local administrators to do in a few months where we had been pounding on folks for years."

Dr. Leginski asked Dr. Shon the extent to which he believes it a prerequisite to have very clear models to show constituencies to encourage change. Dr. Shon said it was not so much necessary to provide decades worth of literature on the subject, but to show groups that programs work and will work in their communities as well.

Dr. Forstein asked how one might approach training the next generation of providers to take an integrated approach to care. The lack of money is always, he said, a barrier to applying knowledge in the field. "Without money, the systems break down to their most cost-effective method, which really means the simplest and least expensive," Dr. Forstein said.

Mr. Yamakawa noted that in the area of training new providers, many of the next generation are already at work in the field in volunteer positions which are required, in many States, as part of the licensing process.

Ms. Day from the National Self-Help Clearinghouse noted that consumer-run and peer-support groups are also effective "these groups," she said, "already know that an integrated approach is essential to helping people recover."

Agenda Item: Comments on Joint Meeting and Discussion - Drs. Gottlieb and Forstein

Dr. Arons summarized the evaluation handout of the joint SAMHSA council meeting held in January. Most respondents strongly agreed that the meeting had improved communication among members; improved communication with the agency; provided enough time for breakout groups; and identified meaningful action items in the breakout sessions.

The joint meeting received more average ratings for sufficient discussion time for unlisted items, sufficient time for interaction with other councils, and sufficient time for interaction with non-members.

Dr. Gottlieb discussed his perception of the joint council meeting, noting that there was more lecture than an opportunity for the assembled members to participate. He said it was interesting to gain some insight on the other councils' relationship with their centers. He felt the meeting would have been improved by understanding the purpose of the meeting and his role in it. The meeting raised the larger question of the role of the councils in influencing or guiding SAMHSA and HHS policy.

Dr. Forstein was encouraged by General McCaffrey?s presentation and his ability to synthesize information and research. He said that he had an opportunity to see him in a different light and to appreciate his willingness to listen and to make distinctions between policy and treatment.

He wondered how councils work together and maintain their identity and make sure issues about mental health are not lost. He indicated his lack of understanding about the administrative split between mental health and substance abuse and the split between treatment and prevention. He wondered too how mental health and substance abuse work together yet maintain separate identities.

Other Council members described their impressions of the joint meeting. Dr. June Jackson Christmas said she was somewhat disappointed at not having had more time to exchange information with other councils on substantive issues. She said she hopes there will be more joint meetings with discussions of thorny issues. Mr. Yamakawa agreed with comments of Dr. Jackson Christmas and added his desire to determine the role of the SAMHSA Advisory Council and how that fits with the role of the center advisory councils. He also suggested that in future joint meetings, a separate CMHS Council meeting should be held.

Dr. Horvath said that the council members had failed by not preparing their own agenda for the large meeting. He felt it unfortunate that members were a passive audience, lectured to by people who did not know who we were, what we represented, or what our function was. He also said he thought the Council should decide what to share with other groups. If there is a difficult question, it should nonetheless be asked. He also felt that there should be more communication among members before the joint meeting.

Dr. Shon said that, had there been more communication about the purpose of the joint meeting and its goals, individual members might have done more to promote those goals. He felt the meeting could have been better planned by staff and members working together. He said that in talking to members of other SAMHSA councils, he learned that they are also concerned about their role vis-a-vis providing and receiving information. He also thought it would have been helpful if all members could have discussed roles, compared problems, and come up with recommendations to individual centers.

Dr. Arons said that Congress established the National Advisory Council for CMHS to prevent insulation and isolation. CMHS strives to balance providing information to the Council and listening to members' advice. He believes staff must provide enough information to members to enable them to give informed advice. He also noted that in the future, the CMHS Council will meet after the joint meeting.

Ms. Rukeyser said she doubted that many who attended the joint meeting agreed with the platform presented by the administration. She felt that begged the question of "Why are we here?"

Dr. Forstein suggested that the Council can advise up to a point beyond which the Administration does not hear what we have to say. He believes the councils need to develop a way to interact and learn from one another's expertise and experience.

Dr. Arons said he will convey to other centers and to SAMHSA that the CMHS Council is interested in another SAMHSA joint councils meeting, but that it would like to have an opportunity to shape the policy and direction for mental health and substance abuse issues. He also said he would convey the feeling that council members enjoyed hearing the positions of high-level Administration officials but would also like an opportunity to shape positions as well.

He then explained to Council members the purpose (to advise CMHS on consumer, child and adolescent, and communications issues) and location of the breakout sessions. The groups were asked to meet until approximately 5:00 p.m. The meeting was recessed.

Day 2 - April 11, 1997

Dr. Arons convened the second day of the meeting by describing two new CMHS videos, one on disaster work and one on children's mental health and systems of care. Brian Flynn, Ed.D., talked about the disaster relief video developed by the Texas Department of Mental Health with funding from CMHS and the Federal Emergency Management Administration (FEMA). Initially, the video was to address ways programs can help disaster victims recover from their experience, especially around anniversary dates. However, the scope broadened to include remembering and symbolism and the importance of rituals. Dr. Shon added that the film also focuses on the need for mental health professionals to engage in these processes.

Agenda Item: Breakout Group Report - Consumer Issues, Elizabeth Rukeyser

Ms. Rukeyser reported from the breakout group on consumer issues, led by Mr. Paolo del Vecchio, CMHS Consumer Affairs Specialist. The 10 participants included Ms. Rukeyser, Drs. Forstein and Martinez, and representatives of the National Mental Health Consumers? Self-Help Clearinghouse and the D.C. Consumer Alliance.

The group discussed the following subjects:

• Reducing stigma and the ?multiple whammy? for people who have co-occurring illnesses, including substance abuse problems and other diseases that require integrated services.
• Reaching minority groups and underserved groups, and whether models for providers and other consumers who work with these groups can be or have been developed.
• Developing creative ideas for communication. Dr. Forstein described the usefulness of some video games designed to help young people develop life skills.
• Improving training in technology so that the best use can be made of the Information Center and ways to reach people who do not have computer access.
• Educating consumers on rules about Social Security benefits, specifically SSI and Medicaid.
• Recognizing the importance of consumer advocacy and the need to encourage consumers to participate and developing strategies to encourage various boards to include consumers and to pay for their participation.
• Developing ways to encourage unity among consumer advocacy groups, or to encourage groups to speak with one strong voice, particularly around the topic of recovery. How can the elements essential to attaining and maintaining recovery be identified and documented? What are the barriers to recovery?
• Addressing problems in paying for medication; some people seek treatment but cannot afford medications. An analysis of co-payments and rules might determine if medications can be removed from the total income figure to avoid jeopardizing other benefits.
• Ensuring that consumers have the opportunity to participate in the planning stages of managed care implementation and monitoring, and to ensure that participation does, in fact, occur.
• Reaching a consensus from consumers on barriers to treatment would help in the debate on what components of treatment are necessary to sustain someone. From there, how do we reach the people who write managed care contracts to ensure that these requirements are included? How can consumers educate managed care companies?
• Increasing consumer participation in CMHS activities, including grant announcement writing.
• Increasing the number of consumers on the Advisory Council.
• Addressing whether the Consumer Affairs Specialist should report directly to the Director.
• Asserting the importance of continued funding for the consumer technical assistance centers, including the Alternatives Conference.

Dr. Arons opened the floor to specific questions that need to be answered in the next year's grant announcement for studies of consumer-operated services. For example, he described the phases of the homeless project, which first included a larger number of project sites. CMHS wrote a manual about what the groups did, then selected a subgroup to evaluate the outcomes and effectiveness. A similar process could be used to address consumer-run services. From there, CMHS could determine whether or not one specific type should be further developed.

Dr. Forstein responded that to assess the efficacy or the role self-help groups play in recovery, one must also have a tracking system to study the relationship between self-help involvement and other systemic issues such as access to care, consistency of providers, ability to pay for medication, and so on. What is needed, he continued, is "some systemic way of tracking what happens, the sequence of events, and to correlate the involvement with self-help into the whole health care package. To do that, you would have to have buy-in from the States that are tracking the utilization of resources."

Dr. Forstein also expressed concern about asking such groups to conduct a self-analysis without first determining the outcome measures for recovery. For example, he said, if one of the outcomes is employment, then one would also have to consider, in some cases, the nature of the State?s employment or rehabilitation program. The entire issue needs to be viewed through a matrix of what is really going on in a person's life in terms of access to care and the consumer?s capability to participate in care. How the self-help group plays a role in that will vary depending on the outcomes being measured.

Dr. Gottlieb stated that he would compare self-help groups with professional groups. If the self-help groups are more effective, then it would be helpful to know what makes them so.

Dr. Martinez remarked that it would be important to convey that the goal is not to show self-help as a replacement for care. He said, "We need to understand that as the States move toward managed care, somebody is at risk, capitated or subcapitated, for a spectrum of populations. Groups tend to shed that responsibility as much as possible. We need to be careful that self-help activities are not seen as an opportunity to shed responsibility."

Dr. Horvath supported Dr. Martinez's view. He added that a model of an effective self-help group exists: Alcoholics Anonymous. Because of the anonymity of AA, outcome evaluations have not been performed and so, after 70 years, no outcome data are available. That failure to produce outcome data, he said, would be fatal to the mental health consumer movement, which needs to be placed under the same scrutiny as the professional groups. He suggested we learn whether or not consumers understand the necessity, in today's environment, of meaningful outcome measures.

Dr. Horvath agreed with Dr. Forstein's statements that all intervention must be "contextualized," which makes evaluation extremely difficult. He added that he felt there is no reason why one could not embed in a system a comparison of a day hospital and a drop-in group.

Ms. Day, a representative of the National Mental Health Consumer's Self-Help Clearinghouse, suggested that consumer-run groups are similar to professionally run groups, and that it might be useful to quantify and measure the similarities and differences of the two.

Dr. Forstein noted that it is important to define "consumer" or "consumer groups," because of the danger in referring to an entire system as if it were homogenous. He would like to know who is participating in consumer groups in comparison to people who participate in traditional mental health services, self-help groups, or both. He suggested that a demographic study of the self-help groups and how they relate to the provider system will describe the kinds of models of care that cross the traditional notions of how things get set up in communities. An outcome of this study would be to learn what has worked for successful consumer groups and to offer technical assistance to other groups.

Dr. Horvath reiterated the importance of engaging consumer-run groups in formal evaluation programs. The earlier evaluation is started, the more CMHS is engaged for technical assistance, the better it will be for the consumer movement.

Chris Carlsson, Ms. Day's colleague at the the National Self-Help Clearinghouse, stated that many groups now understand that "we cannot just do this because it is a good thing to do. We are having to go to managed care organizations and prove the efficacy of what we do." In his work with managed care organizations, a critical issue is determining where consumer-run groups fit within the continuum of care.

Dr. Christmas remarked that it is important for CMHS to provide technical assistance based on what consumer-run groups have done and to include consumer-run groups as consultants.

Dr. Forstein said it is critical to understand the relationship between access to services and medications and the capacity of people to advocate in systems that are set up now to disenroll people. He cited an example of what happens to people who receive entitlements and participate in rehabilitation and who, at some point, lose their Medicaid coverage, making them unable to continue treatment.

He suggested that an analysis of consumer groups might lead to a government policy to deduct medication dollars from the SSI ceiling. That way, people could still qualify for Medicaid's medications benefits.

Agenda Item: Breakout Group Report - Child Issues, Randall Feltman, M.S.W.

Mr. Feltman and Dr. Christmas reported to the Council on child issues in mental health. The lead CMHS staff for the group were Gary DeCarolis, M.Ed., Chief of the Child, Adolescent and Family Branch, and Judith Katz-Leavy, M.Ed., Senior Policy Analyst. The group looked first at the ongoing evaluation of the children's grantee sites for systems of care, and then at the effect of welfare reform on CMHS and on children with serious emotional disturbances.

CMHS has funded 22 grants to develop systems at 29 sites nationwide. A contractor is evaluating these systems. Data from the first 6 months to 1 year, tracking the progress of 13,000 children, are available. Mr. DeCarolis presented preliminary data and highlighted the following points:

• Children in the systems are significantly more impaired than was originally anticipated based on the Fort Bragg analysis, another major federally funded project.
• Clinical results in terms of the children's psychological status are generally good.
• Most children come from juvenile justice, child protective services, and special education.
• Two-thirds of the children are male, although males and females are making similar progress.

The small group expressed two concerns about the evaluation: First, that although psychological status is measured, other indicators, such as homelessness, are not; and second, racial and ethnic concerns have emerged and need to be addressed.

As to the first point, Mr. Feltman stated that CMHS must demonstrate the value of all services in systems of care, not only mental health services. Dr. Christmas added that the evaluation must include indicators that assess child welfare, criminal justice, education, and other social factors.

Regarding race and ethnicity, Dr. Christmas noted that African-American children enter the studies with the lowest kappa scores - but they are identified as being the most challenged. Dr. Christmas wondered if we are enrolling children who, because of their color, are seen as disturbed, more disturbed than they might be if evaluated by testing.

An additional issue is that 22 percent of the children enrolled are Hispanic, a factor that may be because many sites are located in the Southwest in Latino communities and in the Bronx. The group believed that special analyses of these data might be useful to determine how well States are really doing.

Mr. Feltman discussed Ms. Katz-Leavy's presentation about the effects of welfare reform. One provision is that the Federal Government must now review 300,000 children who receive SSI benefits because of physical or mental disabilities. Their cases must be re-approved. There is no clear information on how this review will be done.

The second part of the bill includes new eligibility conditions for Temporary Assistance to Needy Families (TANF), which replaced AFDC. The new conditions include time limits, work requirements, and cooperation requirements to receive assistance. These new conditions will affect the lives of women with mental illness and mothers of children with emotional disorders. The group discussed the problems of finding childcare for children with serious emotional disorders-who is responsible for the treatment they require that would make them acceptable to child care so that mothers can work within the time limits prescribed by the bill.

Mr. Feltman raised the issue of whose responsibility public mental health is: Is it a Federal responsibility because it is a Federal law? Is it a State and local responsibility? Or are both Federal and State governments going to pass it to the local government with no action?

Finally, the group discussed legal immigration and the prohibition against public assistance for legal immigrants who arrived in the country after August 22, 1996. In many States with high numbers of immigrants, such as California, Texas, and Florida, this prohibition will affect mental health services because Medicaid will no longer pay for mental health services for legal immigrants.

Dr. Christmas said that, in the face of such grave concerns, the question for the Council is to consider its role, and the role of CMHS, in helping people. Dr. Christmas stated that although some reactive steps, such as parent education, can be useful, it will be more important to develop proactive steps.

Mr. Feltman reported that welfare reform is a major threat. Ultimately, there will be a set of conditions and an agency will work at the local level with the families. What happens to mothers who do not meet the conditions? What happens to their children? What are the consequences? And who is going to pay for those consequences? This has not been thought out, and there are many implications ahead for local governments.

Mr. Feltman suggested that, to the extent possible, CMHS should make welfare reform a priority issue, much as it has made managed care one. He believes that anything the Center can do to help provide information and understanding to State and local governments in these areas would be very valuable.

Dr. Horvath agreed that CMHS does have a responsibility to act, because of the devolution of Federal power. He stressed that it is essential to act, rather than complain or try to regulate the process. He suggested that collecting data now is imperative because the situation demands prospective, careful monitoring and rapid dissemination of the data. He also said that education is critical, but not to the States, to the public. He suggested that through the Information Center, CMHS could provide information to families about where to go for help.

Dr. Martinez suggested that the Center needs to do an environmental scan to determine how different States are dealing with the effect of welfare reform. He has not seen a comprehensive analysis of the initial impact of this legislation. We need to have a central place to analyze this issue as a whole and give us an initial sense of where the States are going with interpretation and implementation.

Dr. Arons noted that CMHS sent an analysis of the bill by the Bazelon Center to all Council members.

Dr. Shon remarked that CMHS is in a perfect position to conduct a study to look at what the States are doing and to partner with substance abuse in doing so. He stated retrospective data are available on individuals through some of the projects; CMHS should look at these individuals to assess how welfare reform affects them. He thinks it critical for investigators to think about how to develop such a study adding that many States may take similar approaches, so the study would not be so broad as it might first appear.

Dr. Christmas asked whether a study could be conducted with the other Centers; Dr. Arons answered that this is likely, although it has not been discussed.

Mr. Feltman stated that the effects are actually worse than anticipated. He feels the problem is in getting information to people who can effect change, to show the public what welfare reform is doing to people's lives. He stated that he would like a video production to encompass real-life cases. He would like to get the people who have the power to make effective change to feel what is occurring.

Dr. Horvath stated that he does not think a video would influence the people who voted for this. He would like to see the counties rise up instead of passively assuming the burden. He does not think the Center should engage in this political activity. He does, however, feel it is critical for CMHS to collect unbiased data that are compelling and that measure functional outcomes and economic impact. Once the data are published, other groups can take an advocacy position.

Dr. Forstein stated that there should be a way to provide educational materials and technical assistance to counties on how to assess the population.

Dr. Arons noted that it would be helpful for CMHS to bring together people who understand how welfare reform is playing out at the local level with people making the decisions in CMHS and HHS.

Ms. Rukeyser mentioned that she is concerned about how welfare reform and managed care will be coordinated because many programs are being eliminated.

Agenda Item: Breakout Group Report - Communication Issues, Daniel Gottlieb, Ph.D.

Dr. Gottlieb participated in a group that included Council members Dr. Shon and Mr. Feltman. Curtis Austin, Director of the CMHS Office of External Liaison (OEL), led the discussion, which began with Mr. Austin's review of recent public affairs activities, including the new "Voices of Strength" video.

One problem in OEL is the SAMHSA clearance process, which needs to be shortened.

Dr. Gottlieb stated that the group discussed how CMHS and its work can be highlighted. He described the model used in Texas-the reactive model, for crisis intervention and for which public service announcements and experts can be readied; and the proactive model, which includes preparation for "predictable" crises, such as natural disasters and hostage situations. The other aspect of the proactive model includes larger public education campaigns, such as the CMHS children's campaign. He would also like to see another campaign aimed at resiliency - what can be learned from people who survive events such as natural disasters?

The group discussed the possibility of sponsoring a marathon to generate media and public interest in mental health. Also mentioned was a strategic plan to define communication goals.

The group noted that among all of the advisory councils, including the NIMH council, there are many resources and connections, including people who have friends in media. Dr. Gottlieb said these contacts would give Curtis access to media.

The group believed that the media are not interested in data or programs; the media are interested in people. As a radio producer, Dr. Gottlieb said, he is bored when people want to talk about data and programs. It is boring to the public. We need to put a human face on it-for example, for the dual diagnosis/homeless program, the public would want to see the face of a homeless person progressing through a program.

The group discussed how consumer groups are a tremendous resource for getting publicity.

The group also said that CMHS needs to react quickly to distortions in media coverage.

Dr. Shon suggested that CMHS compile of list of subject-area experts whose names could be distributed to local officials during a crisis, along with prepared statements and press releases. In Texas, he said, the mental health agency has a broad list of people who can respond well to media coverage of an event in which mental health is an issue.

Dr. Horvath stated that CMHS needs to continuously and assertively campaign against stigma. One way to do this, he suggested, would be to showcase a person with a severe mental illness who is functioning well or is engaged in a number of activities. This strategy would put a human face on mental illness.

Dr. Horvath mentioned that he was also pleased to hear that CMHS, the other SAMHSA centers, and NIMH are trying to coordinate communication issues, especially because NIMH is thoroughly retooling its communications system. He also suggested that mental health spokespeople participate in a communications workshop so that they have a positive image when appearing on television and radio.

Dr. Forstein commented on the need to meet teenagers on their own turf. He suggested getting MTV to participate and partner with CMHS to promote peer education around mental illness.

Agenda Item: Update on SAMHSA-Wide Issues - Nelba Chavez, Ph.D., Administrator

Dr. Chavez greeted Council members, then introduced Mr. Paul Schwab, who recently joined SAMHSA. She noted that Ulonda Shamwell is now the Acting Director of the SAMHSA Women's Program, and Dr. Delores Hunter is now the Director of the SAMHSA Minority Health Program.

She indicated her pleasure with the January Joint Council meeting. The SAMHSA Councils had recommended a subcommittee to deal primarily with issues surrounding communications; that subcommittee has been established. Drs. Forstein and Gottlieb represent the CMHS Council. SAMHSA is still considering recommendations on parity, welfare reform, and KDAs from the January meeting.

SAMHSA has a welfare reform team that works with all of the Centers and reports directly to the Deputy Secretary of HHS. The team is identifying national organizations which can back the effects of welfare reform, including how States implement welfare reform and its effects on people with mental and addictive disorders especially in terms of what is happening to children.

She discussed KDA activities that address important approaches, including more emphasis on application and closer ties to the block grants and CMHS activities. SAMHSA is publishing guidelines with a focus for child and adolescent mental health providers and for public education, especially on issues surrounding stigma.

SAMHSA is studying parity issues, especially in terms of people with dual diagnoses.

Dr. Chavez mentioned the March SAMHSA reauthorization hearing. She said she believed committee members responded positively.

She expressed concern about what will happen as States are forced to assume more fiscal responsibility for the care of people with severe mental illness.

She mentioned that the FY 1998 budget continued funding for KDA activities; she is proud of the way CMHS has applied the KDA concept to its portfolio. She believes that CMHS is the only Federal agency to engage all of its constituents, including consumers, to learn what is going on in the field and how practices need to be improved.

She mentioned the Starting Early, Starting Smart initiative, which targets children from birth to age 7. This project involves several partners, including the Department of Education and the Annie E. Casey Foundation Family Program. Dr. Chavez summarized the project: a first opportunity and a first-line strategy by SAMHSA to fortify children against the many economic and social factors that can lead later to problems, including mental illness and substance abuse. When Federal support ends after 4 years, the Casey Foundation will continue to fund some projects. The grantees not only look at systems of care and mental health, but also at health care, environmental factors, perinatal factors, and education. She noted how pleased she was with the new CMHS video, "Voices of Strength."

One of Secretary Shalala's Departmental priorities is a program to prevent marijuana and other substance abuse among children; such a comprehensive program, Dr. Chavez said, will be a challenge to design. Drug use among children between the ages of 12 and 17 has increased, including the use of methamphetamine. The drug abuse prevention project will involve the CDC, ACF, and HRSA, among others. One element of the project is to include families and neighborhoods to devise comprehensive solutions to the problems young people face. Under the title of the State Incentive Grants, HHS is asking States to review all funding streams and how funds are being used to prevent drug abuse. They will then ask States to develop comprehensive strategies.

Dr. Chavez closed her remarks by thanking members for their commitment. She hopes that SAMHSA and CMHS will continue to challenge-and be challenged by-Council members.

Mr. Schwab remarked that he enjoyed the debut of the "Voices of Strength" video at the children's grantees meeting. He briefly described his work at HRSA, which includes having served as the Deputy for a branch that supports health professions education. His professional interests are quality improvement, opportunities for academic community partnerships, the social accountability of schools, and work force issues.

Dr. Horvath told Dr. Chavez that he wanted to commend CMHS for taking the Council's directive to focus on co-occurring disorders, noting that the group appreciated the excellent presentations on the homeless program. He noted that the Council will push to make the data public and influence public policy. He also expressed appreciation for CMHS' collaboration in the KDA area.

He also suggested that rather than engaging in a propagandistic anti-marijuana campaign, it might be useful to study the relationship between the early onset of childhood depression and anxiety and subsequent addictions. He recommended a differentiated approach for CMHS, CSAP and CSAT.

Dr. Chavez thanked him for his comments and reminded the group that a Secretarial initiative is different than a SAMHSA-wide initiative. SAMHSA has been asked to lead the anti-marijuana and substance abuse campaign. She agreed with Dr. Horvath's comments and said that the problem remains with professions not acknowledging one another and their contributions to the field. She added that it is unfortunate that we continue to debate at this level instead of coming together, and asked for the Council to help sell the campaign.

Mr. Feltman asked Dr. Chavez to give more information about the SAMHSA welfare reform team. He was interested in knowing how to communicate ideas to the Federal level in areas still being worked on. Dr. Chavez answered that the lead SAMHSA person who has been involved in the HHS meetings would be a good starting point.

Dr. Martinez stated that SAMHSA should take an early look at the effect of welfare reform on both substance abuse disorders and mental illness. He feels that a tidal wave will develop quickly and that the field needs to assemble information and data, both at the State and National levels, as early as possible.

Dr. Chavez remarked that, in fact, Dr. Frank Sullivan has been detailed to the Centers for Medicare and Medicare Services for 1 year and will be involved in training the Centers for Medicare and Medicare Services staff in mental health and substance abuse issues. SAMHSA has been working with the Centers for Medicare and Medicare Services on many issues, and it is critical to have a SAMHSA person at the Centers for Medicare and Medicare Services. She also stated that it is important that SAMHSA continue to work directly with HHS to collect data.

Dr. Forstein said that everyone is concerned about establishing standards of care; he is particularly concerned that States will tend to the lowest denominator of care, rather than the highest, as they enact welfare reform. He suggested developing a mechanism that would report States performance in maintaining a standard of care and access to treatment.

Dr. Chavez told the group that SAMHSA will convene a national conference on women and is looking for cosponsors. The meeting, which will address issues such as mental health, addictions, and violence, will be held in Phoenix in September. The contact person is Ulonda Shamwell.

Dr. Arons thanked Dr. Chavez and Mr. Schwab for attending the meeting. Before recessing, the Council approved the minutes from the September 1996 meeting.

Agenda Item: Public Comments

The floor was opened for public comment. K.C. Day from the National Mental Health Consumer Self-Help Clearinghouse said, "As a consumer, I know a lot about what is going on in the system, but I am not asked very much about my opinion. It is important to bring us to the table, to include us in the discussion."

She thanked the Council for "bringing a real face and a human voice to the Council." Very often, consumers see bureaucracies as just being data sets and numbers. It is nice to see that real people are thinking about how things are going to affect our lives.?

Ms. Day described her own lifelong experience in social service systems, beginning with foster care placement at the age of 2 and culminating in her placement in a State psychiatric facility for 6 months.

She recounted barriers to her recovery, including problems with sheltered employment and Medicare, and indicated the need for dialogue with Social Security about barriers to recovery. In addition, she commented that two things really made a difference in her recovery, compassion and real-life support.

She also said that she believes the Council should be an intermediary between consumers and Federal policy makers to point out the effects of various changes in Federal laws and regulations, and to speak out against stigma and discrimination.

Ms. Day said that although she is in recovery, she still requires services. She stated that in her work with New York State?s planning advisory committee, questions about how to address the many needs of people with severe mental illness were raised, including how to define the population to be served. Other questions included how to examine the long-term effects on people who are denied service because they do not meet rigid criteria. As an example, she mentioned the problems that arise when parents who are consumers lose their benefits.

Ms. Day's colleague, Chris Carlsson noted that the consumer movement has shifted from a civil rights to a social revolutionary movement that now incorporates a more businesslike approach. He hopes that the technical assistance being provided, as well as the knowledge development and application process, will smooth the transition from revolutionary social change to a much more businesslike environment.

Dr. Arons asked Council members for wrap-up comments.

Dr. Martinez said he would like a meeting to address issues about mentally ill families, such as the effects of managed care, welfare reform, and the push toward "treating" people in the criminal justice system.

Dr. Forstein remarked that he would like someone to speak with the Council about barriers to recovery. In terms of finances, it seems as though it is safer to remain ill than to lose benefits. He suggested having someone from the Centers for Medicare and Medicare Services speak to the Council in order to learn more about the day-to-day problems caused by legislation, and to give them some insight when they are asked to testify on the Hill. Congress is not aware of such problems, he said, unless we let them know. Economic implications need to be linked to standards of care.

Dr. Shon commented in Texas, empty prison and jail cells are being filled with people who have mental illnesses. We need to look at this as an economic issue, too, he said. He also remarked that the cost of medication is another critical issue. The cost of medications remained steady for thirty years, he said, but the introduction of new drugs in the last 5 years has caused prices to skyrocket. The system was not prepared to deal with this change. More than ever, economic issues will affect treatment choices.

Dr. Horvath stated that DOD has conducted some important pharmaco-economic analyses regarding trying to save money by not prescribing expensive drugs. He feels that drug companies have studied this and would not be surprised to hear that NIMH has, too. He believed that this would be a good topic for the Council to study. Dr. Arons remarked that Jeff Buck analyzes managed care issues for CMHS and that his office might be able to locate papers on the subject and present information to the Council.

Mr. Feltman said that he would like to know whether Dr. Buck could facilitate a Council discussion on economic issues that might lead to a follow-up analysis, such as the cost of out-of-home placement for children, medication, and so forth.

Dr. Horvath stated that the Council needs an update on block grant outcome measures that CMHS is considering for use in five States. Dr. Arons concurred and agreed to include it on the agenda for the next meeting. He adjourned the meeting at noon.