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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

CENTER FOR MENTAL HEALTH SERVICES
NATIONAL ADVISORY COUNCIL MEETING MINUTES

Council convened at
10:00 a.m. on December 7, 1995
Bethesda Holiday Inn
Bethesda, MD

Dr. Bernard S. Arons, Director, CMHS
chaired the meeting.

Bethesda Holiday Inn
8120 Wisconsin Avenue
Bethesda, Maryland
December 7 and 8, 1995

Council members present:

Bernard S. Arons, M.D., Chair
Anne Mathews-Younes, Ed.D., Executive Secretary
June Jackson Christmas, M.D.
Marshall Forstein, M.D.
Charles Kiesler, Ph.D.
Gloria Johnson-Powell, M.D.
Elisabeth Rukeyser
Eleanor Schorr, J.D.
Joel C. Slack
David K. Yamakawa, Jr., J.D.

Council members absent:

Randy Feltman
Rosa Maria Gil, D.S.W.
Floyd Martinez, Ph.D.
Evelyn Robertson

Ex officio members present:

Patricia M. Collins, Department of Defense
Thomas Horvath, M.D., Department of Veterans Affairs

Welcome and Opening Remarks

Dr. Bernard Arons, Director, Center for Mental Health Services (CMHS), called the meeting to order welcoming all CMHS National Advisory Council members, guests, and staff. Council members and other participants introduced themselves. A motion was passed to approve the minutes from the previous meeting. The minutes were made available to the public through SAMHSA's National Mental Health Information Center (800-789-CMHS).

Dr. Arons reported recent Center activities to Council members. "Change" and "Challenge" remain the operative words to describe the events at CMHS. Dr. Arons emphasized the Advisory Council's role in providing advice and direction to CMHS and noted his appreciation of this important group of advisors.

Dr. Arons reviewed the President's budget, which called for merging a mental health services block grant program and the Projects for Assistance in Transition from Homelessness Program, the PATH program, into a single legislative authority, the Performance Partnership Grant (PPG). SAMHSA has completed the first of five regional meetings designed to identify and develop PPG objectives. The Department is moving in this direction, although the proposal for converting to PPGs has not received final approval.

The President's proposal also called for a consolidated demonstration authority that would combine all the Center's demonstration activities into a single legislative authority with slightly more than the total of 1995 appropriated sums for those programs. The Protection and Advocacy program and the Children's Mental Health Services program would remain separate line items under the President's plan, with a total slightly less than the 1995 appropriation.

The Congressional Response

The House and Senate have created two strikingly different budget proposals. The House passed level funding for the mental health services block grant and did not include a PATH program. The House proposed $356 million in funding for CMHS in 1996; the Senate proposed $370 million for 1996, both significant reductions from the 1995 appropriation.

In terms of demonstration activities, in 1995 there were a number of separate demonstration programs, which totaled about $52 million. The House combined the mental health demonstration with the substance abuse demonstration and created a single SAMHSA demonstration authority of about $142 million, which is a reduction of more than $360 million in SAMHSA demonstration activities.

The Continuing Resolution

Dr. Arons reviewed the status of the Center's current continuing resolution. The CMHS budget is part of the same appropriations bill as Medicare and Medicaid. If a budget agreement was not reached by December 15, CMHS would face another shutdown. Under the continuing resolution, CMHS receives about 21 percent of 1996 appropriations passed by the House. This funding permits the Center to continue supporting children's activities, HIV/AIDS projects, the protection and advocacy program, and the block grant program. The continuing resolution includes language promoting the consolidated substance abuse and mental health demonstrations concept proposed by the House.

SAMHSA Reauthorization

The present proposal for SAMHSA's reauthorization does not include the proposal for enhanced civil commitment options for persons with mental illness. Dr. Arons reported that SAMHSA was working on the assumption that until reauthorization, appropriations were serving as a basis for operation.

CMHS Accomplishments

Dr. Arons reported on a number of CMHS accomplishments since the last Advisory Council meeting. These events included the Partners for Change conference, which was sponsored by SAMHSA and coordinated by CMHS. Tipper Gore served as the chairperson. The conference served as a backdrop for the first meeting of the boards of the national associations of State mental health, alcohol and drug abuse, and Medicaid directors.

"The conference far exceeded our expectations," Dr. Arons reported. "The three national associations, the Association of State Mental Health Program Directors, the State Alcohol and Drug Abuse Directors, and the State Medicaid Directors, formalized their commitment to work together closely in the future and to promote quality and comprehensiveness in the delivery of mental health and substance abuse services."

Many current CMHS activities fall into the category of managed care technical assistance and training for providers, purchasers, family members, and consumers. CMHS activities include:

• Studies on the issues of access, utilization, cost effectiveness, and outcome;
• Collaboration with the Centers for Medicare and Medicare Services to promote quality, comprehensive services for populations that are funded by Medicaid and served by managed care systems;
• Assistance in the review of State waiver applications;
• Contributions to the development of performance measures for Medicaid managed care programs;
• Development of the health plan employer and data and information set (HEDIS) standards, which include about 60 performance measures designed to accomplish four objectives:
  • provide State Medicaid agencies with information on the performance of their Medicaid managed care contractors;
  • help managed care plans improve the quality of services;
  • support efforts to inform Medicaid beneficiaries about managed care plan performance; and
  • promote standardization of managed care plan reporting across public and private sectors; and
• Collaboration with the Institute of Medicine on the development of managed care performance standards.

SAMHSA's National Mental Health Information Center

CMHS is striving to ensure that information is available to a wide variety of customers. SAMHSA's National Mental Health Information Center is the Center's key dissemination source and is now actively involved in supporting the upcoming children's campaign, "Caring for Every Child's Mental Health: Communities Together." The Information Center is establishing collaborative working relationships with the CMHS technical assistance centers; Federal, State, and local agencies; education and research institutions; consumer and family organizations; and the general public. Information is available through a toll-free number and through an electronic bulletin board.

Other Updates

The Protection and Advocacy (P&A) program recently released its 1994 annual report highlighting the activities and achievements of P&A programs nationwide. The report includes a discussion of the impediments to advocacy, notable achievements, advisory council and governing board activities, and training and technical assistance activities.

Dr. Arons reiterated his appreciation for the Advisory Council members and added that CMHS staff have remained positive and upbeat, although the future of many programs is uncertain.

Council member Dr. Evelyn Robertson asked, "In regard to the uncertainty associated with the Federal budget and so forth, what effect did the last shutdown actually have on the Center? Was it operating at all? What took place?"

Dr. Arons responded, "That is an important question. When there is not a budget, when there is not an appropriation or a continuing resolution, it means that no funds have been designated for spending. To spend any money is a violation of Federal law. We had to shutdown. While the continuing resolution had language that allowed individuals to be paid for that time, it is not automatic or necessary that people get paid for that period of time."

Observations From Being on Both Sides

Dr. Arons introduced Council member Dr. Charles Kiesler, who addressed the group from the perspective of a purchaser of services, as well as an administrator of programs that deliver services.

Dr. Kiesler is one of the few people to bridge the two roles of the two major negotiators when it comes to managed care. "I believe that managed care, which I have tried to track very closely, has already swept the country. But I am amazed at the physicians who don't realize that. Physicians feel the cross-pressures intensely coming from managed care and health reform, but have no good sense where it is going. They believe they can somehow stop it. They have no sense that the number of hospital beds has to come down locally, in the State, and nationally, and will whether anyone likes it or doesn't like it," Dr. Kiesler remarked. "Managed care changes every assumption about day- to-day health care. It produces special problems for mental health, even more special problems with public sector mental health, and related problems for each discipline involved in the delivery of services."

Dr. Kiesler reported that from 1968 to 1985, at a time of rapid health care reform, episodes in physical health increased 22 percent. Episodes in mental health increased 113 percent in general hospitals. Dr. Kiesler reported that in reviewing the number of days of care, the difference is even more dramatic. During this same period, physical health care days decreased 55 percent for the Nation; however, days of care for mental health in general hospitals in the United States increased 117 percent.

Dr. Kiesler stated that the total health care costs in Missouri decreased nine percent, compared with a projected 15 percent increase. Therefore, millions of dollars were saved in one year. These savings were accomplished by developing a partnership with an insurance company, developing a trained oversight group of faculty and staff, and creating a patient satisfaction device that was put in place the first day of the HMO's operation, with results published on a monthly basis.

"In the first month, patient satisfaction was above 92 percent on everything except for the time from when you made an appointment to when you arrived and actually saw somebody. Those waits are traditional in medicine," Dr. Kiesler reported. The patient satisfaction forms have helped to better understand the needs of patients.

The University also better understands the relationship between capitation and shared risk. Partnerships are almost a requirement of the future, and an effective partnership requires an appreciation of each party's needs and financial pressures. "You will build a better, more effective, and longer lasting partnership if you do. Capitation isn't just a payment system; it is a different way of practicing medicine. It certainly puts the focus on planning. It decreases administrative costs, which had been the part of the total health care bill that has gone up the most in recent years. The HMO model can decrease that very substantially from where it was, not just decrease future increases," Dr. Kiesler stated.

According to Dr. Kiesler, the private sector has great potential because it is looking for a pragmatic solution to the problem of providing care and controlling costs. "In an HMO, whatever you save, you keep. That is the major advantage of capitation. For about 15 years, I thought that we could not deliver cost-effective mental health services without capitation. I think that is the only way to do it."

"However, the insurance world remains afraid to insure mental health. They are afraid that the costs will get out of control. They are afraid they don't understand it well enough to insure it properly. They would either rather insure it narrowly, which these specialized insurance groups do [the carve-out], or they would rather not insure at all," Dr. Kiesler stated.

"When you are afraid of what something is going to cost, then you have a system that tilts less toward quality of care and more toward saving money, just to reassure yourself," Dr. Kiesler continued. "However, that has not been the case in HMOs for physical health at all. I think quality of care is an issue, and quality of care has been brought into that discussion, in some ways better and at a deeper level than it was brought in before we had HMOs. It has been the right level of discussion."

In the studies with which Dr. Kiesler is familiar, the addition of mental health services to an HMO system can reduce the cost of physical health care. "The for-profit sector is a very pragmatic sector. Mental health has been driven by politics and a priori assumptions forever. The for- profit sector is much more tilted to doing whatever works. If you can demonstrate that something is effective in treatment, they are going to very likely adopt it, whether you think it is the right way to go about it, or whether it is equitable or whatever. You can't have cost-effective care unless you have effective care," Dr. Kiesler remarked.

Dr. Kiesler stressed the need to improve managed care contracts for mental health services. "If we are worried about people giving short shrift to mental health services, then we should be signing longer contracts. The person who is getting short shrifted is also going to pay the bill down the line when these problems pop up again. So it is a matter of getting the right incentives in these contracts," he stated.

Council member Joel Slack commented on Dr. Kiesler's observation that the private sector is interested in doing what is most effective. He stated, "The private industry was profit-driven from the beginning. For years, when insurance policies permitted, they drained every penny out of people's assets. Then they were the ones responsible for dumping people into the State hospitals." Dr. Kiesler responded, "Until the private industry is operating a full system of health care delivery, in which if they do it badly, it comes home to haunt them as well as the patient, the dumping and the exhausting of health insurance and so forth is really a third-party payment issue."

Administrator's Report

Dr. Frank Sullivan represented Dr. Nelba Chavez, Administrator of SAMHSA. "We are in the midst of probably one of the most difficult times in health policy in America that any of us have seen probably within our lifetimes," Dr. Sullivan said. He added that the Administration is going to stand firm against proposals that are thought to be irresponsible with regard to the budget or policy. "While we can't predict with any certainty what the future is going to hold for any of the programs in SAMHSA, our determination is strengthened and is strengthening as the full impact seems to become clearer and clearer, and as the issues are engaged in both the media, political, all sorts of levels in our society," he stated.

What Are the Quality Issues Under Managed Care?
Principles for Managed Care, Clinical Guidelines, Practice Standards, and Quality Assessment

The afternoon agenda focused on the issues of quality in managed mental health care. Dr. Ronald Manderscheid led the discussion. He commented, "The values of the community and values of care appear to be in conflict under some of the managed care scenarios. However, managed care systems are increasingly making an effort toward the development of integrated delivery systems." In addition, managed care systems are increasingly concerned with quality. Dr. Manderscheid reported on the rapid growth of managed care.

"Obviously, managed care is growing," Dr. Manderscheid said. "The private sector now has 120 million-plus covered lives for mental health and substance abuse. In terms of the public sector, many States now have waivers or have applied for waivers to operate managed care systems under the Medicaid program," Dr. Manderscheid reported. "Carve-in, the idea of linking mental health and substance abuse with general health providers, is growing at the present time, resulting in integrated delivery systems." According to Dr. Manderscheid, managed care is being returned to the providers. "If you have integrated delivery systems, and they operate on a capitated basis, you no longer need a carve-out firm to do utilization review," he stated.

Although HMOs are growing as a preferred form of care, the growth is not necessarily the traditional staff model HMO, but the independent practice arrangement or group practice arrangement model HMO.

>From the perspective of quality, Dr. Manderscheid pointed out that policymakers need to determine whether the mental health and substance abuse benefits are equal to the benefits for other disorders. At the moment, they are not. Not all people have access to insurance for mental health and substance abuse. About 41 million people do not have health insurance, and that number is increasing by about 100,000 people per month. In addition, persons with the most severe illnesses are not currently given priority for mental health and substance abuse services.

According to Dr. Manderscheid, many dimensions of quality need to be addressed, ranging from benefits to the organization of services to relating to other people. "To address these issues of quality we need to integrate managed care into the framework of the public health model. The public health model starts not with services, but with populations of people in the community who are in need of a service delivery system designed to meet their needs. A feedback loop lets you know how successful you were in meeting the service needs. Alternatively, managed care focuses on how we organize our service system and how we deliver clinical services. It pays little attention to population. It is only now that we are starting to pay any attention to outcome issues," Dr. Manderscheid stated.

Other aspects of quality, Dr. Manderscheid reported, are concerned with developing principles of managed care, refining best practice and clinical guidelines, developing measures of quality, and evolving models for future practice.

Dr. Manderscheid offered guidelines for developing standards of quality. "It is important to identify values and address discrepancies. Values then need to be translated into principles upon which to base the systems we're developing. It is important to define the systems' protocols and determine how to organize systems of care in this environment and develop the standards for such systems. Clinical protocols and standards need to be included as well, and ethical guidelines must overarch the system. Outcome and performance measures, and feedback, are included because if we are to develop quality measures, all these steps need to be done," he remarked.

Data underpin the system, Dr. Manderscheid said. Managed care data require person-level and system-level information. Person data include information on the health status of a person in a community, how they become enrolled in delivery systems, what encounters they have, what these encounters cost, and what difference the care made to them.

System-level data include information on how to translate health status into disorder rates in populations, how to describe the service delivery system and its services, and how to assess the performance of that system after it is in place.

Quality assurance requires the managed care system deal with all aspects of data. The outcome measures depend on the protocols and standards in use. Different groups focus on different outcomes, and the consumer's perception must be primary. Best practices are the result of standards.

Dr. Manderscheid summarized different standards development activities now under way:

• The American Psychiatric Association is developing standards of care for particular disorders.
• The International Association of Psychosocial Rehabilitation Services (IAPRS) has standards of care for psychosocial rehabilitation, accompanied by ethical guidelines. IAPRS has outcome measures and is developing the capitation rates for its standards, with different risk pools of population.
• CMHS is working with the National Association of Case Management to develop standards of care for case management.
• The National Committee on Quality Assurance is developing a report card, called the HEDIS report card, for payors or managed care entities. The American Managed Behavioral Health Care Association is developing a report card called the PERMS: Performance, Evaluation, Review, and Management System for managed care firms and payors of care.
• The National Alliance on Mental Illness is engaging in a State-by- State review of managed care as it relates to the people with severe and persistent mental illness, and will rank the performance of the States.
• CMHS is creating a report card that is consumer-oriented and based on some of the values that are important in this system.

Clinical outcome indicators are also critical, and CMHS has been working with various agencies to develop an outcome measurement system.

Another CMHS project is the evaluation center at the Human Services Research Institute, which has been working on several types of clinical outcome measures and applying them to different types of clinical populations. According to Dr. Manderscheid, "CMHS should play a leadership role in coordinating these activities and provide leadership in helping to start new initiatives such as systems standards. Demonstrations will be required with diverse risk groups and in diverse places. Data need to be collected and evaluations performed, and TA [technical assistance] is going to be needed to implement these things and integrate them into our infrastructure."

CMHS Principles of Managed Care

Juliann DeStefano, a Special Assistant in the Office of the Director of CMHS, reported on the CMHS Principles of Managed Care. She reviewed the background of this document. "In the course of training CMHS staff in the area of managed care, staff decided that it would be helpful to have a set of principles to guide the Center's work in this area;similar to the principles that were developed over 15 years ago in the Community Support Program." Ms. DeStefano said, "Our principles and values state that policies and practices of developing systems of managed care should address concerns of all the stakeholders in the system;Federal, State, and local governments, consumers, family members, local providers, purchasers, payers, and managed behavioral health care companies;yet ultimately be responsive to the rights and needs of the individual receiving the service."

Ms. DeStefano stated that the principles are organized under six headings: quality of care, consumer participation, accessibility to the service, affordability of the service, accelerator of the system, and linkages and integration with other areas.

SAMHSA/CMHS Activities With the National Committee for Quality Assurance

Dr. Jeffrey Buck Presentation

The National Committee for Quality Assurance (NCQA) is an independent nonprofit organization. It was founded in 1979 and began conducting accreditation reviews in 1991. Dr. Jeffrey Buck said, "NCQA expects in the current year to have performed accreditation reviews on half of the HMOs in the United States. It is an extremely important organization. A major reason that it is becoming important and that it is growing and is involved in these things is primarily because of what employers are requesting. Originally, employers were basically concerned with saving money from their increasing health care costs. But as time has passed, they are becoming more sophisticated, and they want to know that they are doing more than just saving their health care dollars. They want reassurance that they are actually purchasing quality for their employees," Dr. Buck stated. Dr. Buck reported that the Xerox Corporation, for example, is requiring the HMOs with which it contracts to be accredited by NCQA. Xerox provides a 10 percent discount to its employees who enroll with an NCQA-accredited HMO.

The representatives of managed care organizations and representatives of State Medicaid agencies are working together to adapt NCQA's performance instrument, HEDIS.

In 1994, NCQA, CMS, and the State Medicaid directors began to adapt this instrument, HEDIS;which was developed primarily for the private sector and for an employee population;for use by State Medicaid agencies, HMOs, and managed care organizations that contract with State Medicaid agencies for service. CMHS has asked to comment on that instrument.

Dr. Buck introduced his panel of experts on quality including Leslie Scallett, Executive Director of the Mental Health Policy Resource Center; Dr. Eric Goplerud, Director of SAMHSA's managed care initiative and SAMHSA's representative on the NCQA accreditation task force; Dr. Gail Robinson, an expert at the Mental Health Policy Resource Center and the Director of their Office of Policy and Research; and Joy Midman, Executive Director of the National Association of Psychiatric Treatment Centers for Children, a trade association representing accredited multiservice social agencies for children, adolescents, and young adults with serious emotional or behavioral disturbances requiring a 24-hour therapeutically planned environment and milieu. Ms. Midman is the head of a committee within the managed care liaison group that is concerned with Medicaid HEDIS issues.

Dr. Gail Robinson Presentation

Dr. Gail Robinson briefly reviewed the Medicaid HEDIS, which resulted from NCQA applying its regular HEDIS efforts to Medicaid populations. According to Dr. Robinson, NCQA created Medicaid HEDIS because "Medicaid enrollees are different from employed enrollees. They come on and off, depending on their economic or medical status on Medicaid."

The regular HEDIS determined whether a plan was doing well with its enrollees if an enrollee remained with the plan for one year. Medicaid HEDIS had to adapt HEDIS instruments and indicators to a population that goes on and off the plan. Medicaid directors wanted indicators that highlighted some of the basic health needs of the population served by Medicaid, primarily women, pregnant women, and children. Thus, a number of indicators were added to HEDIS, including vaccinations, prenatal visits, and preventive services.

Medicaid HEDIS first requires plans to describe the characteristics of their health plans' beneficiaries. HEDIS wants to know the care classification of each member according to Medicaid. There are four paid classifications: families, women, and children; the disabled; Medicaid and Medicare dual eligibles; and people who may be Medicaid-like, people who qualify because the State has expanded the eligibility definition. Medicaid HEDIS requires information on gender and age, which is detailed for several population groups. And, finally, Medicaid HEDIS requires the ethnic and primary language characteristics of the population.

Mental health utilization measures include inpatient, day or night, and ambulatory care. Mental health inpatient is measured by the rate of inpatient use per thousand members and average length of stay by age and gender. The document views any inpatient, day or night, or ambulatory mental health services by age and gender, the number of members hospitalized for affective disorders, no other disorders, just affective disorders, and the percent admitted for major affective disorders by 90 or 365 days by age and gender. One number emerges from these data.

HEDIS has two quality of care measures and indicators for access and availability of mental health services. Access and availability are a major concern. Access and availability are defined by service utilization and the availability of mental health providers. The key indicator used for service utilization is the percent of enrollees ages 21 to 39 and ages 40 to 64 who had an ambulatory or preventive care encounter during the reporting year. If the enrollee had this type of service, the followup visit for any mental health diagnosis must be with the mental health provider.

The next area is availability of mental health providers, including psychiatrist, psychologist, social worker, registered nurse, marital and family therapist, and certified mental health counselor.

For assessing compensation and risk sharing, HEDIS asks the plan to describe the compensation arrangements for mental health providers. They also look at the clinical management system which provides qualitative information and describes their quality assurance procedures, such as pre-authorization of services, medical necessity, access to specialty consultations, and patient appeal processes.

Dr. Eric Goplerud Presentation

Dr. Eric Goplerud reported that the SAMHSA Advisory Committee held a meeting in August with a number of accreditation organizations to discuss how they were accrediting or assuring the quality of managed behavioral health care organizations.

"NCQA is now specifically focusing on developing a document for accrediting managed behavioral health care organizations, which is important because the old facility-based accreditation standards do not work well with systems of care. They never worked for children, because you always had to go across systems of care. They never worked for people with serious and persistent mental illnesses or with co-occurring mental and substance abuse illnesses," he added.

However, because NCQA grew from the HMO environment and was accrediting HMOs, NCQA has always looked at systems. NCQA is now developing guidelines to address quality assurance, credentialling, utilization management, prevention and early intervention, medical records, grievance, and member rights. NCQA and others hope to develop a report card or HEDIS-type document.

Leslie Scallett Presentation

Leslie Scallett commented on the utility of NCQA and noted that, unlike other health care organizations and accrediting organizations, NCQA staff are concerned about serious mental illnesses and are open to CMHS input.

Ms. Scallett discussed NCQA's accreditation process, stating that when NCQA deals with mental and behavioral health care or accrediting behavioral health care organizations, they are interested in not only the public populations, but also the employed populations that are covered.

Joy Midman Presentation

Joy Midman, Executive Director of the National Association of Psychiatric Treatment Center for Children, spoke about the mental health liaison group's involvement with HEDIS. She stated that the group has met several times to discuss the Medicaid HEDIS and has made efforts to reach a consensus for input to NCQA.

To date, the Mental Health Liaison Group has found that:

• HEDIS was not applicable to their Medicaid populations; and
• HEDIS does not include input from the mental health constituency.

Ms. Midman stated that the group hopes to contact all States and submit an organized response about HEDIS on behalf of the mental health community. "But we are hoping that once this document comes forward, we can begin to do much more of a political grassroots campaign to get the essence of the implications," she added.

CMHS Consumer Initiatives

Paolo del Vecchio, the Center's Consumer Affairs Specialist, noted that CMHS is one of the only governmental agencies that is responsive to mental health consumers through the creation of the position of Consumer Affairs Specialist.

A significant number of consumers attended the Council meeting, and each introduced him- or herself to the Council and spoke about consumer interests and concerns.

Mr. del Vecchio started his presentation by quoting S.O. Leip, a longtime consumer activist, who stated, "I can talk, but I may not be heard. I can make suggestions, but they may not be taken seriously. I can voice my thoughts, but they may be seen as delusions. I can recite experiences, but they may be interpreted as fantasies. To be a patient or even an ex-client is to be discounted."

Mr. del Vecchio reviewed the benefits of consumer involvement with CMHS and outlined the CMHS Consumer Participation Plan. "The first principle of rehabilitation is client involvement. If we are involved directly in the services that we receive, we have better outcomes in the long run. On a systems level, consumer participation helps to shape more human, sensitive, and effective solutions. Benefits include the application of experiential knowledge," he said.

Mr. del Vecchio stated that the purpose of the Consumer Participation Plan is to provide recommendations on how to enhance the participation of primary mental health consumers and survivors in CMHS activities. In developing this plan, Mr. del Vecchio completed five major tasks:

• Review of literature on consumer participation;
• Interviews with CMHS Division Directors, Branch Chiefs, and other CMHS staff;
• Interviews with external mental health advocacy groups;
• A meeting attended by representatives of 20 mental health organizations; and
• An issue of the consumer affairs newsletter.

Mr. del Vecchio described CMHS efforts to promote consumer involvement in the managed care arena. He stated that managed care companies are recognizing that services should be patient-entered.

In terms of recommendations regarding managed care, more managed care materials and dissemination for consumers are needed. "My one pamphlet is not going to solve everything, obviously. There is need for training and technical assistance directly for consumers on multiple levels. There is need for us to be involved in all the activities we talked about today regarding protocols, research, tracking, and monitoring, as well as in managed care rights issues such as choice, bill of rights, and the development of ombudspersons in managed care settings," Mr. del Vecchio stated.

The following recommendations have resulted from Mr. del Vecchio's preliminary work:

• Improve consumer access to appropriate mental health services;
• Educate consumers and their families about the potential for involvement;
• Increase electronic and print communication;
• Foster SAMHSA staff training in sensitivity and stigma issues;
• Increase consumer representation on the National Advisory Council;
• Increase technical assistance across the country; and
• Develop dissemination channels for grassroots information to consumers and provide materials and fact sheets on legislation, research grants, and calendars of events.

Consumers are increasingly involved in CMHS conferences. However, Mr. del Vecchio noted, consumer participants often need financial assistance to support their involvement and some consumers may need training and preparation before attending select meetings.

Increasingly, consumers wish to be involved in the research design and steering committees of demonstration projects. Mr. del Vecchio recommends that training on grantsmanship be provided for consumer/survivor groups, as well as training for consumers on how to apply for grants.

Mr. del Vecchio closed with a final quote from S.O. Leip, "I owe my survival in large part to the consumer movement, for, unlike what we so often hear, most of us are able to speak for ourselves and to represent our own needs. Mental health clients are now making choices both individually and collectively, and we are controlling our own lives. We are becoming empowered."

Mr. del Vecchio was commended by several Council members for his comprehensive listing of Center priorities as well as his inclusion of varying perspectives.

SAMHSA Managed Care Technical Assistance Initiative With Consumer, Family, and Concerned Citizen Groups

Judith Katz-Leavy, a senior policy expert on child mental health and community-based systems of care in the Center's Office of Policy and Planning, reported on the activities of a consortium of consumer groups, family groups, citizen advocates, and legal advocates. This consortium asked SAMHSA to identify a block of resources to be used to develop a technical assistance strategy and training materials to educate members about managed care reform. Dollars were identified and allocated for this endeavor. According to Ms. Katz-Leavy, "I think this is a real first, in that we have so many different perspectives from the mental health advocacy community coming together and identifying a need that crosses all of these organizations, expressing the desire to work together, to develop a leadership capacity among their own State leadership and their various organizations' State leadership."

The goals of the consortium are threefold:

• Improve consumer understanding of managed behavioral health care;
• Develop a leadership capacity for consumers, family members, and advocates to play a more effective role at the State level in managed care design, implementation, management, and evaluation; and
• Identify a role for consumers and families in the current health system accountability efforts.

The group would like to hold a national conference of State delegations in the spring of 1996. These delegations would reflect the same composition as the national consortium; each would be composed of representatives of consumer and family organizations, as well as citizens and legal advocates. Delegations would share information about State- level activities and effective strategies. After the conference, delegates would return home to form State-level coalitions to effect Statewide systems reform.

Another part of this initiative is to provide followup technical assistance to these coalitions when they return to their States and begin advocacy activities at the State and local levels. Finally, the consortium would like to serve as an informal advisory body to the SAMHSA managed care initiative.

Council member Dr. Marshall Forstein commented that in the consumer empowerment movement, it is easy for the most functional, most empowered, and most capable individuals to stand up for themselves. He stated that it is dangerous to focus only on that segment.

"I think when people are empowered and feel mobilized on their own behalf, you can get into a dialogue about that, and you can at least fight it out," Dr. Forstein commented. "Where I think we get into more difficult times is with people who aren't functioning well enough to get into that dialogue. Then the question of things like involuntary commitment, guardianship, and all the more difficult problematic issues about who decides what kind of treatment is appropriate are challenges for us as a profession as well as a medical system."

Dr. Forstein continued, "I think that voice ought to be heard across the spectrum. So I want to support what you are saying and welcome the notion of mental illness as not being something we should be ashamed of. I would like to caution you that the biological foundation of illness is not in and of itself enough to take stigma away. We have known for a long time that people of color are made that way and that people who are gay and lesbian probably are born partly that way. So the question of biological origins has never prevented people from being prejudiced. I wouldn't hold too much hope in that regard, just as a cautionary note. Sometimes the answer to a question doesn't solve the problem."

Day 2

Report From the Center for Substance Abuse Prevention

Vivian Smith, Deputy Director of the Center for Substance Abuse Prevention (CSAP) represented Elaine Johnson, CSAP's Director. Ms. Smith reported that CSAP is producing some outstanding results in prevention, such as the dramatic nationwide decline in alcohol-related crash deaths. More than a decade of prevalence data support CSAP's contention that prevention works.

Ms. Smith stressed the difficulty of convincing the public of the correlation between substance abuse and many serious national problems, such as crime and violence, rising health care costs, school failure, HIV/AIDS, teen pregnancy, and low work productivity. "Like many other agencies, the Center for Substance Abuse Prevention has been endeavoring to effectively respond to the great concern of all Americans;safety and security in their homes and in their lives," Ms. Smith stated.

CSAP has also recognized that the prevention of alcohol, tobacco, and other drug abuse is primarily a State and local responsibility. Therefore, programs have traditionally been designed to help States and communities be more effective in carrying out their prevention obligation. "We know that the most effective prevention programs are those that come from the community, involve the community, and serve community needs directly and explicitly," she said.

According to Ms. Smith, managed care networks and behavioral health do not clearly understand that long-term costs can be controlled and holistic care provided when prevention, intervention, and treatment work together. Therefore, CSAP has taken the initiative in expanding its commitment to working with the clinical community. For example, she said, "CSAP is now in the process of learning how to sustain key priorities and objectives in a managed care environment. We know that what we have learned in prevention of substance abuse will help us link with managed health care. CSAP has reviewed managed care programs that are currently supporting substance abuse prevention activities.

"CSAP is working to determine what data are needed to solidify the inclusion of substance abuse prevention in managed care and how to delineate the barriers related to cost containment, access to services, and quality assurance for a variety of diverse populations. One of the milestones that the prevention community has achieved in the managed care field has been the inclusion of substance abuse prevention benchmarks in the draft Medicaid HEDIS document."

Report From the Center for Substance Abuse Treatment

David Mactas, Director of the Center for Substance Abuse Treatment (CSAT), reviewed key CSAT activities.

CSAT has an operating budget of about $1.6 billion, of which $1.2 billion is used for the administration of the substance abuse prevention and treatment block grant. This is a congressionally mandated and congressionally determined formula for the distribution of funds to the States and territories for allocation to community-based, not-for-profit organizations that provide treatment services.

Of the 21 million people in America who are in need of substance abuse intervention, CSAT dollars pay for 40 percent of the treatment for 3.8 million people. According to Mr. Mactas, there remains "a glaring and graphic disparity between the need in this Nation and our capacity to address that need."

Mr. Mactas reported that in 1990 the National Academy of Sciences and the Institute of Medicine published a book, Treating Drug Problems, which includes cost offset data indicating that for every dollar spent on substance abuse treatment, $11 was saved in other areas; primary care, entitlement programs, housing, and criminal justice, to name a few.

According to Mr. Mactas, "It was interesting that this book was prepared in 1990 and looked at the Federal expenditure for substance abuse treatment from the years 1973 to 1989, when the United States had its war on drugs. As a matter of fact, we had a number of wars on drugs. Invoking the parlance of the military engagement, we rolled up our sleeves and attacked this problem. We got tough. The language was warlike: drug kingpin, civil forfeiture, seizure of assets, and drug bust. The drug czar emerged at this time. "

Mr. Mactas stated that despite the forceful rhetoric during this time, funds available for substance abuse treatment diminished by 65 percent. However, this baseline was optimistic compared to today's level of funding. The problem is, Mr. Mactas said, that there is little support for substance abuse treatment. This lack of support is based on stigma; a chronic, relapsing condition such as alcoholism does not engender support, but, rather, the notion of moral weakness surfaces.

Interestingly, stigma in the world of substance abuse focuses not only on the patient, but on those who treat that client and patient. These realities make it difficult to relate to our funding and authorizing authorities. The CSAT demonstration budget may receive significant funding cutbacks. According to Mr. Mactas, these cutbacks are not only "disrespectful, but decimating."

Mr. Mactas addressed the perception of "expertise" in the substance abuse arena, "expertise" that would seem inappropriate if speaking about other disabling medical conditions. He commented that scientists can testify before Congress and "overwhelm" them with scientific language and walk away with increased funding; however, this does not occur with substance abuse. Substance abuse problems have an element of familiarity that is not actually warranted. In fact, such familiarity results in diminishing resources for persons who are addicted to alcohol and other drugs. The moral stigma remains a reality. Mr. Mactas noted that perhaps the legitimate substance abuse experts have made it all seem too "easy" and "we have not promoted the field of substance abuse treatment as imbued with scholarship."

Councilmember Horvath stated that he shared Mr. Mactas' sense of panic. "I share it because the people who have a presumption of expertise are not only folks on the Hill, but are colleagues in medicine and psychiatry. The presumption of expertise among health care managers and psychiatric professionals is truly scary. I think the problem we have is not only with Congress and the public, we have a problem in the house of medicine, and quite frankly, we have a problem even in the house of addiction treatment," Dr. Horvath stated.

Dr. Forstein added that he agreed with the two previous remarks and stated that there is a "national denial of what this illness [substance abuse] is really about, even though we call it an illness, we treat it like a prime moral failing."

Dr. Forstein added that "one of the dilemmas that we face is how to put treatment programs, prevention programs, and mental health treatment into a vehicle that is really usable and effective at different stages of peoples' individual life patterns. How you treat a 17-year-old is very different from how you treat someone at end-stage disease, for instance, in terms of psychosocial issues as well."

Councilmember Slack commented on Mr. Mactas' remarks about "stigma" and noted that in some antistigma campaigns, the wrong spokespeople, namely, celebrities, are involved. Mr. Slack said that celebrity involvement leads to sensationalized pain. Celebrities recover from their substance abuse problems, and their recovery makes headlines. However, they also have $5 and $10 million dollar contracts that they are fighting to get back. For the average person who abuses alcohol and other drugs, the reality is quite different.

Managed Care Update, The Impact of Proposed Medicaid Program Changes on Mental Health Services

Dr. Jeffrey Buck presented Congress' Medicaid proposal. According to Dr. Buck, Congress is proposing much more than a cap or block grant for Medicaid. Although the President has vetoed the proposed changes, they do represent the position of the House and Senate on the Medicaid program, and the proposed changes may still find their way into a negotiated agreement.

Dr. Buck reminded the group why CMHS needs to be concerned about the Medicaid program. The estimated Medicaid spending for 1995 was about $158 billion, which represents about 14 percent of all personal health expenditures. Medicaid is the largest single mental health and substance abuse program in the Nation. It accounts for about half of State and local spending on mental health and substance abuse, and about 10 percent of all Medicaid beneficiaries use mental health or substance abuse services in the program.

Federal funding for Medicaid is open-ended. The formula which determines the Federal share of the cost is based on per capita income and varies between 50 and 80 percent. Therefore, a State such as Mississippi receives almost 80 percent Federal cost sharing and only has to contribute about 20 percent of the cost for care.

On the other hand, New York, which is at the other end of the range, has to contribute 50 percent of the costs. The greater the number of people New York wants to cover, and the more services it covers, will result in higher State expenditures and, therefore, higher spending by both the State and the Federal Government.

If a State wishes to restrict its spending, it can omit optional services. It can review the set of eligibility groups that are optional to cover, such as the medically needy. A State also has discretion on costs in the area of defining the duration and scope of services.

The Medigrant program is being proposed to replace Medicaid. Federal contributions will be capped under this program. State matching would also change. According to Dr. Buck, this has major implications. "The kind of services that States can provide under this program are actually expanded, but they are all optional. There are virtually no mandatory services under this program. It is entirely up to States. A State can say it will not cover a single mental health or substance abuse service under its program. Under this proposal, they can do that and have a completely legitimate Medigrant program."

Medigrant also eliminates entitlement to services, the individual's right to sue under the program is specifically prohibited. Although a service is covered in the State, and an individual is eligible to receive the service under Medigrant, it does not necessarily guarantee that the individual will receive the service. In addition, eligibility is essentially optional. The Medigrant program removes much of the Federal authority that exists under the current program.

According to Dr. Buck, "Congress is definitely trying to come up with an overall budget savings figure." A new funding formula would dramatically affect some States. Every State receives some growth, but a floor and a ceiling are established. Other States are restrained from receiving more than a certain amount of growth.

According to Dr. Buck, Medigrant effectively removes the IMD exclusion for mental health and substance abuse. State hospital care, child residential treatment, and residential substance abuse treatment can now be covered under this program. Waivers will no longer be necessary.

Mandatory eligibility will be very limited. Under the Medigrant proposal, States have to cover only two groups, both of whom must be under the Federal poverty level: people with disabilities, and pregnant women and children under the age of 13. Disability will be defined by the State, Medigrant will cut the current link between Medicaid and SSI. "So what happens with SSI does not necessarily have any implications under this proposal for what happens to people in terms of their eligibility for services," Dr. Buck noted. States may cover anyone whose family income is below 275 percent of the poverty level.

Cost sharing can also increase under this program. "In general, unless you are a family under the poverty level with a pregnant woman or child in that family, States may impose significant premiums and cost sharing. So, if you are a person with a disability, the States can charge you a premium in order to get Medicaid," Dr. Buck stated.

Dr. Buck noted that the proposed program will have the following implications:

• Resources will shrink.
• States will have more incentive to come up with corresponding dollar amounts. The potential savings, particularly in some States, are not going to be from Medicaid programs solely within managed care. Managed care is generally focused on acute care. Most of the savings have been demonstrated with acute care. A big portion of Medicaid dollars are not for acute care, but chronic and long-term care. Choices must be made about eligibility and coverage.
• Dollars can be used for institutional care. It will be tempting to take Federal dollars, use them to provide institutional support, and limit community agency support through grants and other revenues.

Dr. Buck pointed out that these changes will affect each State differently, the effect may depend on the relative powers of various constituencies that are concerned about Medicaid dollars.

SAMHSA Subcommittee Report

Barbara Wagner, Acting Director of SAMHSA's Division of Planning and Policy Implementation, reported on the SAMHSA Subcommittee Conference on Co-Occurring Disorders.

According to Ms. Wagner, this conference was prompted in large part by data from the national comorbidity survey, which showed that almost 10 million individuals have dual disorders. Reports from States and providers noted that services and service systems are not meeting the needs of these individuals. To address the needs of this special population, SAMHSA convened a conference to develop recommendations for a national strategy to improve services for this population.

Ms. Wagner remarked, "From the wealth of important information presented, we learned about a window of intervention opportunity. Data have shown that the onset of mental illness precedes the onset of substance abuse for the majority of dually diagnosed people by 6 years. We really need to begin to target our resources toward this window of intervention opportunity," she added.

The recommendations from the various subgroups at the meeting are being compiled by Dr. Burt Pepper, Director of the Information Exchange in New York City. He is working on a conference report and a national strategy for improving services for individuals who are at risk for or who are experiencing co-occurring substance abuse and mental disorders.

Councilmember Horvath commented on the strong collaboration that developed at the meeting between the addictive disorders and the mental health communities. "This was a very nice example of how constituencies with genuinely and deeply different agendas were able to come together and were able to collaborate."

Public Comment

During the period for public comment, Linda Jones from the Bazelon Center reported on the development of a manual to assist consumers in monitoring their own services.

Ed Elkind reported on his current activities on behalf of consumers of mental health services in Washington, DC.

Joe Rogers announced that an "Alternatives" conference would be held this year. He remarked that the consumer-run meeting will provide the opportunity for the consumer/survivor movement to meet and exchange information. In addition, the meeting will allow participants to learn about the latest public policy issues as well as methods of providing and developing consumer-run services. Mr. Rogers suggested, "It would be helpful if the Council sent representatives on a formal basis to hear from consumers. We would be willing to organize a session where members of the Council could be there and hear from consumers about their concerns and issues."

Liz Sais, a visiting fellow from Britain, reflected on the CMHS Council sessions. "We have a tendency in Britain to get the American public policies a few years later," she remarked. "So I am thinking, we will probably get an erosion of entitlement to health care shortly." She added that there is much discussion in Britain about who deserves and who does not deserve health care. For example, if you smoke are you entitled to treatment? If you engage in unsafe sex are you entitled to treatment? And in mental health, what happens if you do not comply with treatment or you choose not to take treatment?

Miscellaneous Reports and Final Comments

Dr. Arons reported that CMHS is trying to identify the best opportunity to ensure consumer and family involvement in the grant and contracting process.

Dr. Forstein said that, after speaking with David Mactas, he was intrigued with the possibility that CMHS, CSAP, and perhaps CSAT create a small working group of Advisory Councils to discuss longer term and broader approaches to working more efficiently on similar issues. "Given shrinking resources, I think we all have to get smarter about what we do have to use," he added.

Dr. Forstein remarked that although the information supplied to Council members is useful, there is not enough time for the Council to discuss how this information affects their thinking. "I cornered Chuck for a few minutes in the hallway, and I was fascinated by some of the dialogue that we were able to have, and I have talked to others," he remarked.

Dr. Kiesler echoed Dr. Forstein's final comment, "This was an entirely passive meeting. I thought for a while that [CMHS was] advising me."

Mr. Slack recommended that each meeting allow a Council member to present some issues. "It is nice to see one of our own being able to present. I would recommend that Marshall have an opportunity not just to present about the conference that he attended, but present some HIV issues and how they relate to the mental health community and the substance abuse community, and to stimulate our thinking on it, as Dr. Kiesler did on the managed care issue."

The meeting adjourned at 12:35 p.m.