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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

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

Holiday Inn Bethesda
8120 Wisconsin Avenue
Bethesda, Maryland

April 11 and 12, 1996

Council members present

Council members absent

Guest Speakers

Welcome and Opening Remarks

Dr. Arons began his Director's Report to the Council by illustrating the unique impact of CMHS in the recent Oklahoma City bombing. "Next Friday marks the first anniversary of the Oklahoma City bombing. The bombing profoundly touched the lives of many, including staff at the Center for Mental Health Services. It affected us not only as Americans who suddenly and tragically witnessed the nation's vulnerability, but also as Federal employees. We felt under fire and threatened."

He added, "Our role in the immediate aftermath of the Oklahoma City bombing is a good example of how the Center for Mental Health Services directly affects people's lives."

During the hours and days following the disaster, the Center for Mental Health Services staff advised Oklahoma State and City officials on how to manage the influx of help. CMHS staff assisted local officials in planning for the kinds of mental health services people would need after the media and public attention had waned and the citizens of Oklahoma were left to cope with enormous psychological trauma.

The Center's ongoing response to the Oklahoma City disaster underscores the fact that no matter what public mental health need arises, CMHS staff respond.

• To promote coordinated and comprehensive strategies and services across all levels of government and with private sector organizations;

• To move the system forward by demonstrating what programs work best for what groups and under what conditions; and

• To disseminate information when Americans need it.

To respond to the ongoing budget crisis and the Administration's goal of creating a government that's more efficient and responsive to the needs of communities, Dr. Nelba Chavez has initiated a reorganization of SAMHSA. Secretary Shalala has approved the reorganization plan and supports its implementation. Funds saved by streamlining and consolidating functions will be given directly to programs.

Dr. Arons then praised the CMHS staff whose work ethic "speaks to the heart of what we, as public servants, as mental health providers, as consumer advocates, as researchers, do each day. These staff have been successful at keeping people first, not budgets, not the politics, not the numbers."

Following Dr. Arons' presentation, Council member Joel Slack asked if there was going to be an Office of Consumer Affairs in SAMHSA.

Dr. Arons responded that the current SAMHSA reorganization plan is focused on administrative functions. He then asked the Deputy Director, Thom Bornemann, to take that idea back to the SAMHSA Planning Committee.

Agenda Item: Implications of the AIDS Epidemic for Patients with Serious Mental Illness--Marshall Forstein, M.D.

Dr. Forstein introduced his remarks by making a contextual comment about HIV. "I've been working in the epidemic since 1981, when I saw my first patient at Massachusetts General Hospital as a psychiatric resident. Since that time, it has become clear to me that the paradigm of HIV really serves us in many ways apart from the specific illness."

For example, Dr. Forstein stated that, "while we don't have a Commission on Schizophrenia, the AIDS epidemic really represents an emerging epidemic in our society that came out of the blue in some ways and has had a devastating and almost ubiquitous effect on every conceivable social and political institution in our culture."

"How we respond to this epidemic is useful in a number of ways, both politically, socially, and certainly for the mental health profession in terms of how we prepare to help prevent epidemics and treat people in the midst of them."

By way of background, Dr. Forstein commented, "Four thousand people in the United States had AIDS before the Government spent money on it officially, whereas ten women had toxic shock and millions of dollars were spent in ten days. The first identified patients were gay men, and the assumption was that there was something intrinsic about gay lifestyle which caused AIDS. In fact, it was originally called the gay-related immune deficiency syndrome. So if you didn't identify as gay, you weren't vulnerable."

However, in other parts of the world, HIV was heterosexually transmitted, affecting many populations who were not even being monitored in terms of their health needs. "There were literally thousands of people in Central Africa dying of this disease called 'Slim Disease' before we even identified it as HIV."

Dr. Forstein emphasized the political context because "what's happened in the gay and lesbian community to respond to the epidemic has not happened in the consumer advocacy arena for people with mental illness."

Dr. Forstein noted that mental health concerns exist throughout this spectrum of exposure, infection, and then the deterioration of the immune system. When the natural history of the development of a mental illness is superimposed on HIV, we begin to see the complexities of treating a population who have both a major medical illness and a major mental illness under circumstances where resources may not be adequate to handle either one.

Dr. Forstein then reported on a research study that looked at some of the seroprevalence rates of patients hospitalized in psychiatric units.

One seroprevalence study in New York looked at general psychiatric admissions for HIV positivity and then compared that to women admitted to hospitals to deliver a baby. This study found that about 1 percent of women coming in to give birth were HIV positive.

However, in the psychiatric admissions among women, the prevalence of HIV is significantly higher than the general female population coming in to deliver babies, which raises a concern about how many people are affected by this whole epidemic.

The risk behaviors among people with severe mental illness and lifetime alcohol and substance abuse disorders now ranges from 25 to 75 percent.

Dr. Forstein added that some surprising information has come from studies in New York City, and our assumptions that certain types of mental illness predispose or prevent or protect against certain kinds of sexually transmitted diseases or pregnancies are faulty.

For example, he stated, "People who are hypomanic were thought to be more sexually active than people who are schizophrenic, who might be more isolated and withdrawn. In fact, when you look at the research, that is not true. Some findings related to the difference between what we might call consensual, willful sexual activity and the use of sexual activity for other purposes, like finding a place to live, supporting your children, getting access to goods. The motivation behind the activity might vary from diagnosis to diagnosis, but the actual experience of sexual intercourse, for instance, did not. If you look at patients with schizophrenia, 45 percent had been sexually active in the last 6 months. With various diagnoses, it went up to 58 percent, so there's some variability there. And in an outpatient population within the last 12 months, 62 percent had been sexually active. Within the last 6 months, 62 percent of patients with schizophrenia in this sample had multiple partners. The researchers speculated that a diagnosis of schizophrenia might affect the capacity to make behavioral choices."

In terms of condom use, the knowledge base is not the problem. People understand that condoms work, but people are not taking that knowledge and doing something with it. According to Dr. Forstein, there's a great deal that has not been paid attention to in terms of primary prevention. Persons with a mental illness are like the gay male community was initially, somewhat stigmatized and unempowered. However, unlike the gay community, there has not been the capacity within the consumer movement to generate the kind of AIDS support infrastructure, prevention, and outreach that there has been in the gay male community.

There is an almost total lack of primary care availability for many people with chronic mental illness. For the people who do take care of people with chronic mental illness, the resources available to do primary prevention and secondary prevention with HIV are being taxed to the limit.

Dr. Forstein reported that he is working with the AIDS Commission to work with the Practice Research Network of the American Psychiatric Association to gather data on those patients who are on psychiatric medications and also being treated for HIV because there is no current database.

Dr. Forstein added that we are spending enormous amounts of money and energy at the latter stage of this illness but very little on keeping people who have a mental illness from getting HIV. For example, the single most effective way to reduce HIV in the homeless population is to give them homes, and it's probably cheaper. "Buying somebody a 'condo' may be cheaper, for instance, than having them live in shelters where HIV is transmitted at an extraordinary rate and magnifies the virus at an unbelievable rate." Unfortunately, we don't yet think of such psychosocial interventions as primary prevention.

And finally, Dr. Forstein added that "one of the greatest problems is that in managed care, there is a lack of access to psychotherapeutic modalities. There are a number of modalities which need to be seen as chronic [adjuncts] to keeping people from getting infected or from passing it on to others. We are applying old technology to a new problem. We need to develop some new technologies for changing behavior over the long haul. The paradigm I would give you is that we're trying to get people to go on a diet for the rest of their life and never cheat. Think about how good you would be at that, and then add on to that people who are dealing with psychosocial factors like homelessness, severe mental illness, lack of access to primary care, lack of mental health support in a way that really works for them on a day to day basis, and you see that the obstacle we're up against is just simply enormous."

Dr. Forstein also added that what we can learn about the AIDS epidemic will serve us very well as a paradigm for how to deal with other emerging epidemics, such as violence toward children or domestic violence. It is important to learn how to approach the totality of this epidemic and provide the adequate prevention, primary prevention, secondary prevention, and adequate medical care throughout the spectrum.

In closing, Dr. Forstein reminded the Council that this epidemic is not just about HIV. "It's about how we institutionally approach multidimensional problems in people who are up against a tremendous amount of obstacles and are terribly vulnerable."

Council member Kiesler pointed out that NIMH did some research at least 15 years ago on the clash between attitude change and behavior change. "When you have 97 percent of people knowing what causes something and 10 percent acting accordingly, there is a literature out there that will help to close that gap in terms of instrumental action."

Agenda Item: Report on Consumer Affairs

The Consumer Participation Plan has now been drafted. It represents a series of recommendations that are gathered from consumers as well as CMHS staff about how to increase consumer involvement within the Center.

Mr. del Vecchio then shared a draft handbook for mental health consumers on managed care.

Agenda Item: Status of Estimation Methodology for Adults with Serious Mental Illness--Dr. Ron Manderscheid

"CMHS work on population estimation is a result of Public Law 102-321, which required the Center to develop a definition for adults with serious mental illness and children and adolescents with serious emotional disturbance, and then develop an estimation methodology by which both of these populations could be estimated by States as part of their block grant application to the Center for Mental Health Services. There needs to be some methodology for determining in a State the groups that should be the highest priority, and that was the reason for this."

Dr. Manderscheid continued, "To estimate the population with serious mental illness requires that you identify various types of diagnoses and identify various types of functioning. The most recent work done by the National Institute of Mental Health estimated the size of the population with severe and persistent mental illness as being about 2.7 percent of the adult population, or about 5.5 million people. This estimation provides CMHS a basis for working on the broader population of persons with serious mental illness, as well as the conceptual foundation for an appropriate methodology."

The current legislation, Public Law 102-321, requires both the population definition, which was issued in the Federal Register on May 20, 1993, and the estimation methodology.

According to Dr. Manderscheid, the data used for this process come from the Epidemiological Catchment Area (ECA) Project. The other data source is the National Comorbidity Survey done by Dr. Ron Kessler at the University of Michigan. The approach CMHS used included all persons who would have met the criteria of persons with severe persistent mental illness (the 2.7 percent or 5.5 million people) and additionally other people who had a DSM diagnosis and who met particular functional criteria.

Agenda Item: Mental Health Statistics Improvement Program Consumer Report Card on Managed Care

Increasingly the data elements of these report cards are person-centered information. For example, the HEDIS report card tells payers what they are getting out of the system. The NAMI report card looks at how managed care is performing for adults with serious mental illness and children and adolescents with serious emotional disturbances. The current CMHS report card is consumer-focused. It is value-based and includes outcomes. The four dimensions of the report card are issues of access (including cultural access), appropriateness, prevention, and consumer satisfaction.

Dr. Getka commented, "The report card is particularly interesting to me. The Army, Navy, and Air Force in the National Capital Area are in the midst of reconfiguring the delivery of all mental health care, a fairly ambitious project, to provide a continuum of care across the services, the geography, the disciplines of mental health care providers, to a beneficiary population of about 430,000 people."

Agenda Item: American Psychiatric Association (APA) and CMHS Collaboration--Melvin Sabshin, M.D., Medical Director, APA, and Deborah Zarin, M.D., Deputy Medical Director of the APA's Office of Research

Dr. Sabshin began by describing the APA, which is the oldest medical association in the United States. It was formed in 1844 and preceded the AMA by 40 years. According to Dr. Sabshin, "Psychiatry has undergone massive transformations in the United States. APA has grown from 2,500 members before the Second World War to about 40,000 psychiatrists."

According to Dr. Sabshin, "Starting with 1970, there was a period of massive change with increased accountability, and now tremendous regulation and some overregulation. The issues of coping with managed care and the real economic forces are now the dominant focus for the 1990s. In fact, as I see the current period, we are in a very interesting interaction between new science and new economics."

In closing, Dr. Sabshin noted his appreciation to CMHS for its support of some major APA activities, including functions related to the psychiatric problems associated with AIDS. "You supported us with minority fellowship grants, as well as offered training for about 200 minority fellows. CMHS has also helped us in the State/university collaboration project. And finally, CMHS has helped APA prepare people to work in a managed care system, and this is the time to try to adapt or cope."

Dr. Sabshin then introduced Dr. Deborah Zarin who reported that "the APA Office of Research focuses on knowledge transfer-how we can use the knowledge that has been gained by various research studies to help improve patient care, which is ultimately what we're trying to do."

At the conclusion of the presentations from APA, Council member Slack commented to Dr. Sabshin that in light of psychiatrists seeing about 2 million patients a year, "Do you think that the addition or the integration of consumers on your assembly, on your councils, within your organizational structure, might enrich your organization?" Dr. Sabshin answered, "Yes . . . over the last 3 years, members of consumer and family groups have attended our board meetings. We have moved to the stage of debating more formal membership-up until now it has been voluntary. In a period of economic revolution as we're in today, it is vital for all professions to have strategic alliances with consumers and families, because the goals of the professionals won't be achieved without that alliance. So it's very pragmatic. Beyond that, we have the good sense of realizing that consumers and families can teach us a great deal."

Council member Slack encouraged not only the liaison with consumers and family members but also employment of persons who receive the services psychiatrists provide. He commented, "I think it will enrich your decisions, it will enrich the process of reaching your decisions, and it will probably make for a better association."

Council member Slack then pursued his second line of comments by encouraging the APA to include research on recovery and including people who have recovered in that research. "I know that when I was hospitalized, I had a lot of tests done, wanting to know how sick I was, wanting to know the syndromes I had, but no one has ever asked me since I recovered how I recovered."

Dr. Sabshin commented that he was particularly interested in definitions of health and strength and happiness. He hopes that the next century's research will focus on adaptation and normal development over a life cycle. The notion of studying people's recovery is one part of that work.

Council member Martinez then asked Dr. Sabshin if psychiatry has developed any policy position and/or guidelines, with regard to its relationship with the other mental health disciplines. Dr. Sabshin responded that "in most areas of work, the collaboration is very good. I think most psychiatrists would recognize that we have reached a point where treatment practice in psychotherapy is an interdisciplinary area. I think there are still some differences in terms of who has the power in diagnosis. There are some interesting questions of boundaries, policy questions of the boundaries of the diagnostic categories."

In terms of managed care, Dr. Sabshin commented, "The managed care systems are putting enormous pressure on any utilization of psychotherapy. The way that is playing out is of concern to me on a policy level, and I am fearful about atrophy of skills in psychotherapy by the next generation of psychiatry. This, I think, would be of concern to other psychotherapists. The whole question of reimbursement is terrible, and I believe that psychiatrists' central capacity by the year 2010 will be in the practice simultaneously of psychotherapy and pharmacotherapy. That will be the model treatment by the year 2010, if there is no atrophy."

Agenda Item: Performance Partnership Grants and Performance Measurement for Public Health Programs

In the Public Health Service, this idea has been translated into Performance Partnership Grants. "We're now just experimenting with trying to understand what an outcome for these programs might be. We intend to enter partnerships with the States, localities, providers, and hopefully, with an ever-broadening array of people that has as the baseline a sense of accomplishment that relates directly to consumers."

Mr. English then posed a number of questions relating to outcomes. "Interestingly enough, we haven't really focused too much on clinical outcomes in this process so far. Most of the outcomes have to do with either system change or system improvement."

Secondly, Mr. English commented that there are political implications of this process. "A lot of political decisions are much better made without information. What are the implications for managed care? I think managed care is at the forefront of this issue. It may be that we are going to learn from what is happening in the managed care world about the management of outcomes to make this a truly meaningful activity."

Mr. English then commented, "I worry somewhat about the right balance between the value of the information and the cost to collect, aggregate, and report and analyze. I wonder what your thoughts are with respect to that cost, because, as you can well imagine, a lot of this information is going to cost money to collect. We don't have a lot of experience as to how much of a return on that investment we're going to get."

Dr. Bush then informed the Council members about the progress to date in implementing Performance Partnership Grants (PPGs). Regional meetings are being held to develop "results" statements which will be sent to a committee at the National Academy of Sciences, to determine what's doable now through the current management information systems and the data systems that we have. This information will form a national menu from which the States will choose which of these result statements (turned into objectives) they want to choose to work on with their particular block grant monies and to incorporate into their particular State plans.

Following the presentation, Council member Martinez commented that while it is "generally a good idea, it could get out-of-hand real fast. There is the difficulty of limiting it down to a relatively few items that give you some meaningful kinds of results, results that have substantial validity." "The other issue," according to Dr. Martinez, "is organizing the measures in some kind of a successive filter process, so that the State mental health authority doesn't simply pass down to regional authorities and to provider organizations the task and the chore of doing whatever it needs to do in terms of collecting information. So it's got to be stratified so that you get buy-in and commitment and responsibility at various levels of involvement with grant funds within the State itself. Otherwise, I think you have a fairly meaningless kind of set of results."

Council member Kiesler echoed Dr. Martinez' comments, "I think these things are almost doomed to fail, they're grandiose. A much better thing to try would be the analog that model organizations do on continuous quality improvement. I think a much more practical, low- level, and concrete kind of approach can succeed, but it's not a regional approach because it really depends on where any particular State is and what their political situation is and what they can hope to accomplish, because what they want to do is accomplish the goal that they set out to do."

Dr. Martinez added, "The thing is, the State systems vary so much in terms of how they're structured, what their local priorities are, how they use those funds. I mean, there's a huge difference in outcome, in implications of that outcome if you basically use your grant funds for supplementing Title XIX services, versus going in a whole other direction and saying we're going to hold these funds sacred for people that don't have any coverage. That gives you a very different set of priorities, and, I think, different outcomes, different implications as to how well the State is doing."

Council member Forstein contributed to the discussion by commenting, "Somehow what happens in mental health seems so distant and unrelated to what's going on in health care in other fields. If there were some way to connect outcomes in mental health to outcomes in primary care, for instance, it seems to me you would get some kind of standards of care which would elevate State expectations to a level that you could create a kind of general level of expectation around outcomes. I think what managed care is trying to do is to provide high-quality, low-cost care up front to avoid expensive care down the pike. That's not a bad model for us to use in mental health care. And it seems to me that if we could somehow get on board and get the same forces going for us that are going for primary care, that it would be to our advantage to do that. There are mental health outcomes from other processes."

Dr. Keisler echoed Dr. Forstein's sentiments and noted that while the majority of the country is capitated now, and only a tiny minority capitated for mental health, we need to try to develop partnerships that factor mental health care in at the primary care level.

According to Mr. Feltman, coordinating outcomes at the State level could be facilitated if the Federal Government would model some of the collaboration that they're after at the State and local level by having a person from a Center within SAMHSA try to initiate a discussion of mental health outcomes. The Centers for Medicare and Medicare Services and the Center and ACF should speak together about mental health outcomes with one voice. The group could ask the States to agree on what they were going to measure for the dollars spent. But, Mr. Feltman continued, "Without a vision, the people will perish. I think that one of the big problems is there isn't that shared vision, and that the vision of the Federal Government is not clear. Sometimes the visions of the mental health systems are not clear."

Dr. Martinez advised that it would probably be a mistake to try to mimic the outcome measurement efforts that are happening at the local clinical level. "I think it would be much better to try to look at impacts on systems, systemic change, and what impact these dollars have. I think if you begin to measure how creative and effective States were in promoting that kind of effort, then I think you're probably headed in a better and more useful measurement direction than trying to somehow mimic the clinical outcomes. Nobody is measuring clinical outcomes very well anyway."

Thom Bornemann--Futures Report

Dr. Bornemann added that SAMHSA needed to:

• Take a look, a hard look, a critical look at our current method for doing business;

• Re-examine current and future key relationships;

• Develop strong results and an outcome orientation; and

• Redefine the concept of national leadership away from a reliance on mandates and regulations.

Following Dr. Bornemann's introductory comments, the Council members had an opportunity to respond to the draft Futures Report.

Council members pursued this question of the Federal role, and the idea of a CMHS-sponsored forum comprised of the major stakeholders in the field of mental health was explored. Council member Rukeyser remarked on the effectiveness of the national leadership forum that was sponsored by NIMH some years ago and as a group came up with the principles for mental health care reform. "I think that sort of pulling together a consensus of what the priorities are at least probably needs to be done at that level."

Dr. Forstein commented, "There's something about mental health and mental illness and the natural history of development of human beings and what happens when they get off track, that could be instructive to managed care. A dialogue that explains the relationships between what we do now and the impact down the road would be important. When you make the connections between mental health development, not just mental illness but mental health development and the benefits to society of having a long-term view of that, then you in some ways can start to hold managed care companies accountable, not just for the year-end report to the stockholders, but to really [use] a capitated notion, if you, for instance, could force managed care companies to have a 10- or 15-year responsibility for a family, where people could take their managed care from job to job, I mean I think it's all connected to-the fact of the matter is that managed care companies are only managing costs really. They're not really managing long-term care. They're managing cross sections of long-term care, but they're only managing it in terms of the longevity of their responsibility. And none of what we do in mental health care is cross-sectional." Dr. Forstein added, "I think managed care is doomed. That's a personal feeling, because I don't think they're really addressing the heart and problem of providing health care over the long haul. You only take out so much money before you realize there's no profit any more and then you pass it on to someone else. So I'm frankly not impressed by managed care's capacity to handle the health of the nation, not in the present form at least. They're managing costs and they're trying to get care to change according to how costs have changed."

Dr. Forstein recommended that CMHS develop some leadership around expanding the vision of what health care and mental health care is in the long term. "CMHS is one of the few organizations that can really pose critical questions, propose them, sit down at the table with for- profit people, talk about some of the issues, facilitate some of these carve-out transitions, help people ask the right questions. CMHS ought to be taking the leadership in how you care for people and then try to do it in the most effective, efficient, cost-effective way. CMHS could begin by identifying the parameters of mental health care. The leadership role really has to do with a vision of articulating what a health care system would be, what it would include and what part does mental health play in that health care system. The carve-out, carve-in thing is a great example of how carving out only makes sense if you're an actuarial accountant. It doesn't make any sense when you're talking about taking care of patients. CMHS should be focusing on the integrated approach to care. I think CMHS should look at how knowledge is applied, what's the current state of knowledge, and whether we're using it or not."

Mr. Feltman commented that CMHS has provided national leadership in the development of systems of care. "Before managed care kind of took over everything, systems of care were on a fast track and were moving into State legislation, all kinds of initiatives all over the place, which was about a service delivery system across agencies to manage our high risk people toward objectives that benefited them, their families, and saved money across systems. That's what systems of care were kind of about. Systems of care have fallen off a cliff in the name of managed care cost discussions."

Day 2--April 12, 1996

Agenda Item: Mental Health in a Shifting Political Environment

The current legislative issues facing CMHS, according to Mrs. Koyanagi, include the SAMHSA reauthorization which changes the block grants to the Performance Partnership Program, and while it continues the Child and Mental Health Services Program it consolidates the mental health demonstration programs. At the moment, the bill is not going to come before the Senate leadership for review. The House as well is not attending to the SAMHSA reauthorization bill because they are involved with debating significant Medicaid and FDA reforms. The implication of the Congress not acting on the SAMHSA legislation is that SAMHSA/CMHS could find itself with the new Congress with no authority for the CMHS programs. According to Mrs. Koyanagi, "that is a very dangerous situation to be in . . . it opens the possibility of the elimination of SAMHSA, if that's what they want to do, or moving SAMHSA around or moving pieces of SAMHSA around, as well as changing the programs and cutting the money. So it would be very, very good to get this bill through this year."

In terms of financial support for SAMHSA, the Congress is very close to reaching agreement on the 1996 appropriation, and Congress is now working on the 1997 budget and it "does look quite bleak."

In terms of Medicaid, according to Mrs. Koyanagi, "the situation is quite complicated because there are so many proposals, including a proposal from the National Governors Association (NGA), which is somewhat similar to the Republican plan, except it's more favorable to the States, and the Clinton plan, which takes an approach that we should tinker with the current Medicaid program and save some money by capping on the basis of how many individuals are covered in the program, rather than going to a strict block grant. There are other plans as well."

Many of the Medicaid reforms make dramatic proposals in terms of eligibility, services, and financing. In terms of eligibility, the biggest problem is that the current entitlement of Medicaid for people who receive SSI benefits has come under challenge. "The rhetoric around this always highlights people with mental illness, in this case particularly children. Both the NGA and the Republicans propose only to have a guarantee for children 12 and under. Whereas for mental health care needs, adolescence is the time when you get an explosion of need for care and more accurate diagnoses."

On the services side, the switch to a block grant, which is in both the Republican plan and the NGA, means a new list of covered services. The block grant would repeal the current Medicaid prohibition against payment for services in a State hospital or in a private psychiatric hospital for adults. "The State hospital is of some concern to us, because it's very feasible that States would utilize these shrinking Medicaid mental health dollars to subsidize the State institutions, which could put an even bigger strain on the community budget under Medicaid."

On the financing side, the States would have a lot of flexibility to take their own money out. The matching rate would decline. According to Mrs. Koyanagi, "I've seen an estimate that $214 billion of State resources that would otherwise have to go into Medicaid in order to pull down the Federal match could simply be taken out by the States from the Medicaid program over the next 7 years. That's in addition to any Federal savings. The Federal savings in these plans now are somewhere between $60 and $80 billion, depending on which plan we're talking about. So that's something, we're up to $300 billion coming out of the health system for poor people and that's going to be very, very hard to absorb."

Clinton and the bipartisan group would put some standards in about the utilization of managed care. None of the other Medicaid reform proposals would do that. All of the proposals would allow States to move individuals into managed care without requesting a waiver from CMS.

Some of the other issues that Mrs. Koyanagi is concerned about are that while the bipartisan group and the Clinton group start with Medicaid and make proposed changes, the block grant from the Republicans and the NGA is a whole new program. "That means that every rule, every regulation, every piece of case law in Medicaid is moot the minute this is enacted. It's a brand new program, it has a new history, and nothing that we've been able to accomplish can stand in place unless you go back and build it again."

The Council also discussed with Mrs. Koyanagi the issue of parity between mental health and physical health care insurance coverage. When this issue was explored during the health care reform debate, the policymakers looked at parity costs in other countries. According to Mrs. Koyanagi, with parity, the spending levels rise up to somewhere near 10 percent. According to Mrs. Koyanagi, parity is very much needed, "in the private insurance market, when you look at the numbers, the spending level is far below what you would expect. In HMOs, it's 3 percent, and in fee-for-service, it's only about 7 percent. So there's no question if we put a better and a fairer mental health benefit into private insurance, there would be some increase, the only question is by how much."

Dr. Forstein commented that the "increase might represent what people actually need as opposed to what we're willing to pay for."

In closing, Mrs. Koyanagi reviewed what has been happening with the special education law-Individuals with Disabilities Education Act (known as IDEA)-which is also coming up for renewal this year.

"Children with behavioral disorders are selected out again for some special language. In this case, it's because of discipline problems in the schools. Principals and teachers have continued to attack IDEA as giving special education children extra protections against discipline. They've been very successful in this session of Congress in getting their issues heard. A particularly problematic issue in this proposed legislation is the phrase serious disruptive behavior. For example, a child who significantly impairs the education of other students or his own education, or impairs a teacher's ability to teach, can be moved to an alternative educational placement for 35 days. That could be an alternative school. It can be home schooling, which is quite a euphemism, because after the child is sent home they will be lucky to see a teacher more than once or twice a week for a very brief period of time. Basically, they're sent back to the family for the family to look after." Parents can appeal, if they know that they can do so. They can pursue it with a hearing officer and try to reinstate their child or get their child at least some reasonable way of getting an education. But they may have to go through all of that and they may have to go through it repeatedly. There's no limit in this bill on how often the school can do this. According to Mrs. Koyanagi, "if the school wants to get rid of a child, this language is really going to let them do it. Unfortunately, we're very aware from some of the statistics in IDEA that the schools do want to get rid of kids."

In closing, Mrs. Koyanagi commented, "I think we see a pattern in this Congress of singling out adults and children with mental illness and taking particularly harsh measures against them."

Agenda Item: Demonstration Agenda--Mike English

He then asked for the Council members' advice about the proposed direction and the fundamental message that we're trying to create.

The Division is taking a systems focus. "Everything that we're talking about is in the nature of encouraging and promoting knowledge-driven system change. The Division is working on developing a knowledge base that is most likely to yield real change in systems of care for people, and we want to take advantage of opportunities that are existing in the field and take advantage of multiple approaches. For example, in a world where the Federal grant support dollars are now more limited, the Division needs to identify and adopt other approaches that will complement the fundamental knowledge generation activity that's our mission. The Division will work on proactive knowledge exchange. The Division is thinking about technologies that are going to effectively yield real consensus building in this community."

Council members responded to Mr. English by suggesting that consensus building needs not only to be done with agencies outside the Government, but also within, as well, and also with the Congress. Information that appears to be of interest in the current legislative climate includes cost effectiveness data. While Dr. Forstein appreciated the argument for cost effectiveness, he commented that we should not "lose sight of what a fair level of service, an equitable level of service ought to be. More and more people have fewer and fewer services, even as we're cutting costs. Using this cost analysis, a shift from mental health is going to show up in child welfare and corrections. What would be interesting in the cost analysis would be to really analyze the long- term problems to the society."

Dr. Keisler commented, "I think the data are pretty clear, at least on a State-by-State basis, that when mental health saves money, it doesn't spend less, it brings care to more people. That's very, very important."

Agenda Item: Positioning CMHS in the Marketplace--The Opportunities Available Through the CMHS Programs

The electronic communication systems include bulletin board services where discussion forums can be established. Consumers can talk to each other and grant managers can communicate with all their grantees.

The World Wide Website provides for enhanced communication with graphics. Information can be shared electronically, and people can order publications online. The Information Center also links to all the CMHS technical assistance centers. According to Mrs. Mehuron, "The difference between the Information Center and the TA centers is that the TA centers really are the ones that provide the expert advice and hold the conferences and develop the knowledge base and the publications . . . and also have, for the most part, single-issue expertise, an in-depth expertise."

The Information Center also provides a number of internal services to Center staff, such as distributing GFAs electronically, database searches, exhibit support, materials development, and other kinds of editorial services including preparation for these National Advisory Council meetings.

"Since January, we've had about a 250 percent increase in the use of the bulletin board service. We've had a 100 percent increase in requests, and over the last year we've distributed more than 40,000 publications. As we move forward, we expect to reach millions through the World Wide Website and are now about to embark on nationwide marketing."

Following Mrs. Mehuron's presentation, a demonstration of the Information Center bulletin board system and the World Wide Web communication system were demonstrated to the Council members.

Public Comment

Mr. Faenza then addressed the importance of the CMHS role in providing Federal leadership but noted that CMHS only receives 20 percent of SAMHSA's funding. "It's true that our view is that this is an irrational division of resources within SAMHSA. But saying that, as just a fact does not mean that we have any question about the need for the work of the other Centers or do not support their management. We want all three Centers in SAMHSA to be strong and treated fairly."

Irene Lynch then addressed the Council and expressed her concern about providing adequate nutrition for consumers of mental health services. She then reported on her progress in graduate school and noted that for consumers to be successful in society, they need an adequate education. On $400 a month, one can barely live, much less have any kind of a decent kind of life. Ms. Lynch added that true mental health professionals need to be "willing to risk losing your job. Because if you really cared to see us recover, to completely rehabilitate, then you may be out of jobs. Are you willing to risk that?" In closing, Ms. Lynch acknowledged the important work of Howie the Harp (who recently died) on behalf of homeless persons.

Dr. Arons then acknowledged the contribution of Eleanor Schorr, a founding member of the Council. "This will represent her last meeting with us, and I wanted to say how much we appreciated her involvement from the beginning. And by rotating off, it means that hopefully she will be refreshed and available to come back in some capacity in the future also. I very much wanted to thank you for coming and your participation."

In closing, Dr. Arons asked the Council members to consider future agenda items. Dr. Martinez asked that continued tracking be provided on the subject of managed care.

Dr. Getka added that he felt that it was very important to address the issue of cost offsets and that a strategic focus for CMHS would be to tackle that area. There is a real importance of establishing the linkages between mental health services and cost offsets to the people who control the purse strings that support CMHS and, really, any organization.

"For example, years ago, it was a policy of the Navy to discharge people with alcoholism, that it was felt to be more cost-effective to discharge them from the service than to treat that condition. However there was a very vocal group of recovering alcoholics in the military who tried to make the case loudly and strongly in a variety of different ways that alcoholism was a disease, that it wasn't a moral problem. That repeatedly fell on deaf ears in the offices of the people who controlled the military budgets. When it was determined that a Navy pilot who was discharged for alcoholism is worth about a million dollars to the system but only costs about $25,000 to treat successfully, money has flowed freely in the treatment of alcoholism in the Navy ever since."

Dr. Getka emphasized that "given the small number of people that you have and the amount of money that you're working with to target demonstration projects at that sort of thing, I think it would pay off in tremendous ways."