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90–515 PDF 2004

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RECOMMENDATIONS TO IMPROVE MENTAL

HEALTH CARE IN AMERICA: REPORT FROM

THE PRESIDENT’S NEW FREEDOM COMMISSION

ON MENTAL HEALTH

HEARING

BEFORE THE

SUBCOMMITTEE ON SUBSTANCE ABUSE AND

MENTAL HEALTH SERVICES

OF THE

COMMITTEE ON HEALTH, EDUCATION,

LABOR, AND PENSIONS

UNITED STATES SENATE

ONE HUNDRED EIGHTH CONGRESS

FIRST SESSION

ON

EXAMINING THE REPORT FROM THE PRESIDENT’S NEW FREEDOM COMMISSION ON MENTAL HEALTH RELATING TO RECOMMENDATIONS TO

IMPROVE MENTAL HEALTH CARE IN AMERICA

NOVEMBER 4, 2003

Printed for the use of the Committee on Health, Education, Labor, and Pensions

(
COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

JUDD GREGG, New Hampshire, Chairman

BILL FRIST, Tennessee

MICHAEL B. ENZI, Wyoming

LAMAR ALEXANDER, Tennessee

CHRISTOPHER S. BOND, Missouri

MIKE DEWINE, Ohio

PAT ROBERTS, Kansas

JEFF SESSIONS, Alabama

JOHN ENSIGN, Nevada

LINDSEY O. GRAHAM, South Carolina

JOHN W. WARNER, Virginia

EDWARD M. KENNEDY, Massachusetts

CHRISTOPHER J. DODD, Connecticut

TOM HARKIN, Iowa

BARBARA A. MIKULSKI, Maryland

JAMES M. JEFFORDS (I), Vermont

JEFF BINGAMAN, New Mexico

PATTY MURRAY, Washington

JACK REED, Rhode Island

JOHN EDWARDS, North Carolina

HILLARY RODHAM CLINTON, New York

SHARON R. SODERSTROM, Staff Director

J. MICHAEL MYERS, Minority Staff Director and Chief Counsel

SUBCOMMITTEE ON SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES

MIKE DEWINE, Ohio, Chairman

MICHAEL B. ENZI, Wyoming

JEFF SESSIONS, Alabama

JOHN ENSIGN, Nevada

EDWARD M. KENNEDY, Massachusetts

JEFF BINGAMAN, New Mexico

JACK REED, Rhode Island

KARLA CARPENTER, Staff Director

DAVID NEXON, Minority Staff Director

(II)
CONTENTS

STATEMENTS

NOVEMBER 4, 2003

Page

DeWine, Hon. Mike, a U.S. Senator from the State of Ohio ................................ 1

Kennedy, Hon. Edward M., a U.S. Senator from the State of Massachusetts ... 3

Reed, Hon. Jack, a U.S. Senator from the State of Rhode Island ....................... 5

Mayberg, Stephen W., Commissioner, The Presidents New Freedom Commission on Mental Health, Sacramento, CA; and Charles G. Curie, Administrator, Substance Abuse and Mental Health Services Administration, U.S.

Department of Health and Human Services, Washington, DC ........................ 6

Appelbaum, M.D., Paul S., Department of Psychiatry, University of Massachusetts Medical School, Worcester, MA; Michael M. Faenza, President

and Chief Executive Officer, National Mental Health Association, Washington, DC, on behalf of the Campaign For Mental Health Reform; Carlos

Brandenburg, Administrator, Nevada Division of Mental Health and Developmental Services, Carson City, NV; and Ann Buchanan, Cockeysville,

MD ......................................................................................................................... 22

ADDITIONAL MATERIAL

Statements, articles, publications, letters, etc.:

Stephen W. Mayberg ........................................................................................ 36

Charles G. Curie ............................................................................................... 39

Paul S. Appelbaum, M.D. ................................................................................. 41

Michael Faenza ................................................................................................. 64

Carlos Brandenburg ......................................................................................... 66

Ann Buchanan .................................................................................................. 68

(III)

(1)

RECOMMENDATIONS TO IMPROVE MENTAL

HEALTH CARE IN AMERICA: REPORT FROM

THE PRESIDENT’S NEW FREEDOM COMMISSION ON MENTAL HEALTH

TUESDAY, NOVEMBER 4, 2003

U.S. SENATE, SUBCOMMITTEE ON SUBSTANCE ABUSE AND MENTAL

HEALTH SERVICES, OF THE COMMITTEE ON HEALTH, EDUCATION, LABOR, AND

PENSIONS, Washington, DC.

The subcommittee met, pursuant to notice, at 10 a.m., in room

SD–430, Dirksen Senate Office Building, Senator DeWine (chairman of the committee) presiding.

Present: Senators DeWine, Kennedy, Reed, Murray, and Clinton.

OPENING STATEMENT OF SENATOR DEWINE

Senator DEWINE. We welcome all of you today. I certainly welcome my colleague, Senator Kennedy, whom I look forward to

working with closely on these issues particularly as we move forward on the reauthorization of the Substance Abuse and Mental

Health Services Act.

Today we are meeting to talk about the report and recommendations made by the President’s New Freedom Commission on Mental

Health. The findings in this report are certainly very important but

also very troubling.

Each year, approximately 5 to 7 percent of adults and 5 to 9 percent of children experience serious emotional disturbances or serious mental illness. These illnesses are a great impediment to their

daily function. Mental health is fundamental to a person’s overall

physical health and well-being and is crucial to leading a productive and balanced life.

Mental illnesses such as depression and schizophrenia are illnesses as destructive as cancer or heart disease. Mental illness

ranks first among illnesses that cause disabilities in the United

States, Canada, and Western Europe.

The World Health Organization has reported that suicide worldwide causes more deaths each year than war or murder and is the

leading cause of violent death.

Despite such staggering statistics, it is apparent that there continue to be barriers to treatment for a great number of those who

suffer from mental illness. In a 1999 report by the Surgeon General

on the topic of mental health, he said: ‘‘Research-based capacities
2

to identify, treat, and in some instances prevent mental disorders

are outpacing the capacities of the service system the Nation has

in place to deliver mental health care to all who could benefit from

it.’’

Clearly, this leaves a great number of people with mental illness

suffering.

We know that the monetary and emotional toll of mental illness

is very high in this country. Annually, the indirect economic cost

of mental illness is around $79 billion, $63 billion of which is due

to lost productivity.

There is also a tremendous cost to the system for the incarcer- ation of mentally ill offenders. Approximately $4 billion is lost in

productivity for the incarcerated who have mental illnesses and for

the lost time of those who provide family care.

The difficult issues surrounding the incarceration of mentally ill

offenders are discussed in this report and are issues that have been

of great concern to me for quite some time. In an effort to address

this problem, I worked with my fellow Ohioan, Congressman Ted

Strickland, to introduce the Mentally Ill Offender Treatment and

Crime Reduction Act, which recently passed the Senate. This bill

offers grants to create and expand mental health courts and also

provides training for officers in criminal and juvenile justice agencies to help them properly identify offenders who may be mentally

ill.

This bill also has received broad bipartisan support. I want to

thank Senator Kennedy for his work on the bill. And I feel it is

very important, both to public health and to public safety, that we

continue to move forward on this bill.

The report that we are examining today will help us do even

more here in Congress to help ease the suffering of the mentally

ill. I look forward to hearing the goals and recommendations in this

report as well as plans for implementation. This report has the potential to be a concrete starting point for the Federal Government,

the States, and the mental health community in reforming the current system.

On our first panel this morning, I would like to introduce Dr.

Stephen Mayberg and Administrator Charles Curie. Mr. Stephen

Mayberg comes to us from the California Department of Mental

Health, where he serves as director. Dr. Mayberg was appointed director in 1993 and was reappointed in 1999. Prior to his appointment, he served as director of the Yolo County Mental Health Program. He has served as president of the California Mental Health

Directors Association, president of the National Association of

State Mental Health Program Directors, and president of the

NASMHPD Research Institute.

Administrator Curie is from the Substance Abuse and Mental

Health Services Administration. He has been gracious enough to

testify at two previous hearings of this subcommittee, and we

thank him for doing that.

Prior to his confirmation as administrator in October 2001, Mr.

Curie served as deputy secretary for mental health and substance

abuse services for the Department of Public Welfare in Pennsylvania. During his tenure, he established and implemented a policy

to reduce and ultimately eliminate the use of seclusion and re-
3

straint practices in the State hospital system. This program won

the 2000 Innovations in American Government Award sponsored

by the Harvard University John F. Kennedy School of Government,

the Ford Foundation, and the Council on Excellence in Government.

Mr. Curie also served as president and CEO of the Helen H. Stevens Community Health Center in Carlisle, PA and executive director and CEO of the Sandusky Valley Center in Tiffin, OH.

Let me now turn to Senator Kennedy for introductions of our second panel.

OPENING STATEMENT OF SENATOR KENNEDY

Senator KENNEDY. Thank you very much, Mr. Chairman.

I might just make a brief opening comment, and I want to first

thank Senator DeWine. He was really responsible for our committee developing this Subcommittee on Substance Abuse and Mental

Health Services because of his long-time interest and strong commitment. We are hopeful that in this Congress not only will our

committee be more involved and active but also that the Senate

will in terms of our national debate and action. So I want to thank

him very much for all that he has done in developing the subcommittee and also for calling this hearing today.

As the President’s Commission reports, our mental health system

is in crisis and is providing inadequate care. Too many people are

falling through the cracks and not obtaining the care they need.

Improving access to mental health care is one of the most important health issues facing the Nation. One of the saddest examples

of the crisis is the emerging issue of families giving up custody of

their children because mental health care and support are not

available.

We have legislation with Senator Grassley and myself, cosponsored by more than 77 Members of the Senate, and the funding is

already in the budget, so we are very hopeful that we can get that

legislation passed before we adjourn this fall.

As the report makes clear, the mental health system needs far

more than simple repair. A broad transformation is needed. Mental

illness should be treated with the same urgency as other medical

problems.

When the President announced the formation of the Commission,

he urged Congress to enact legislation that would provide full parity in health insurance coverage of mental and physical illnesses.

He emphasized that limits placed on benefits are a major barrier

to mental health care. Yet the legislation needed to bring parity to

mental health care is still far from enactment.

It has been 3 years since the ‘‘Mental Health Equitable Treatment Act’’ was first introduced by Senator Domenici and Senator

Wellstone. In this Congress, it has broad bipartisan support, with

66 Senate cosponsors. The American people should not have to wait

any longer for this help.

The bill brings first-class medicine to millions of citizens who

have been second-class patients for too long. Passage of the Paul

Wellstone Mental Health Equitable Treatment Act should be the

first order of business in transforming the mental health system in

the Nation.
4

The crisis in coverage has many harmful consequences. Private

practitioners are withdrawing from managed care networks over

concerns about adequate reimbursement, and patients are left

struggling to find doctors who will treat them. Often, patients face

a 50 percent copay for mental health services compared to the customary 20 percent for physician office visits. Many do not get the

treatment they need for mental disorders because of the higher copayment.

The report also cites another key barrier—the shortage of mental

health professionals trained to work with children and adolescents

particularly in rural areas. Disparities like this in mental health

services should be eliminated, and early mental health screening

and assessment should be common practice.

The failure by a patient to obtain treatment can mean years of

shattered dreams and unfulfilled potential. Americans with mental

illness deserve health and happiness, too, just as those with physical illness.

One in five Americans will suffer some form of mental illness

this year, but only one-third of them will receive treatment. Millions of our fellow citizens are unnecessarily enduring the pain and

sadness of seeing a loved one or a friend battle illnesses that seize

the mind and break the spirit.

Now is the time for Congress and the administration to take action to address the mental health crisis in our Nation. I look forward to the important testimony we will hear today and to working

with my colleagues to achieve the reforms so clearly needed.

I might mention, Mr. Chairman, that we have excellent studies

that go back to the Carter Administration. Rosalyn Carter appeared before this committee and was one of the first First Ladies

to testify on mental health. She was very impressive then, and she

continues to maintain a very high profile and a great interest in

this issue, and I believe she was over in the House of Representatives testifying as well. She has done an extraordinary job.

Then, we had the 1999 Surgeon General’s report, and now we

have this report. So it is really coming down to whether we have

the will to take action.

I think we have seen the documentation of what is necessary and

what is needed, analyzing the challenges that we have out there

in terms of the fragmentation and the failure to reach parity. But

as we are looking at the failure to reach parity, we fail even in the

Medicare system, the public system. We have not done our job even

here in terms of making sure that that system is going to have full

parity.

What we are finding out is that the longer we wait—and today

we are going to hear some excellent testimony—it is getting more

difficult to develop providers. The numbers are shrinking, reimbursement obviously is poor, the paperwork is exhaustive, and the

gymnastics that doctors have to go through in order to treat their

patients correctly in terms of getting proper treatment for them is

wearing on the doctors as well as on the patients. Children and the

elderly are the most vulnerable, and we see that and hear about

it time and time again, and we have not done what is necessary.

So I want to thank the chairman. He is a man of resolution and

determination, I know, and he works to try to see how we can work
5

across the span to try to get bipartisan support. We want to thank

him very much for having this hearing, and we commit ourselves

to working with the chair and all of the members of the committee.

Just briefly, I want to thank Paul Appelbaum, at the University

of Massachusetts Medical School. It is a great pleasure. He is currently director of the Department of Psychiatry at the University

of Massachusetts Medical School and has been a practicing psychiatrist for 20 years. I want to thank him for his commitment to

treating the indigent and working poor. He has had an extraordinary commitment to that over the course of his life.

He is immediate past president of the American Psychiatric Association, where he highlighted the growing problems of persons

with mental disorders in accessing needed psychiatric services both

in terms of personnel and facilities. It is a very important message

for us.

And I want to thank Ann Buchanan who will be telling us a

human story. She is enormously courageous, and we look forward

to her testimony.

Thank you, Mr. Chairman.

Senator DEWINE. Senator Kennedy, thank you very much.

Senator Reed?

OPENING STATEMENT OF SENATOR REED

Senator REED. Thank you very much, Mr. Chairman, and let me

also commend you, not only for scheduling this hearing but for your

consistent and determined advocacy for mental health issues and

so many other issues in the U.S. Senate and the United States

Congress.

I want to thank the witnesses for being here. The New Freedom

Commission is another in a series of reports which suggest that our

mental health care system is broken and needs significant reform.

And policymakers at every level—national, State, and local—have

to be concerned about this system.

I am particularly disappointed as we begin this hearing that we

have yet to move on the Paul Wellstone Mental Health Parity Act.

I think that measure alone would contribute significantly to improving the system of mental health care throughout the United

States.

We have seen despite our initial efforts to achieve mental health

parity, the insurance companies have found ways around it. What

we want to do is find a way so that they can deliver care that

meets the needs that we see out there in society.

I think indeed, one of the first steps we should take in this reform effort is to pass the pending Paul Wellstone Mental Health

Parity Act, but as the Commission points out, that is not the only

step that we can take and must take. In my own State of Rhode

Island, we have a very, very active group of mental health practitioners and support systems, but we still have problems. One of the

key problems is in the area of childhood and adolescent mental

health services. We have a wonderful hospital, Bradley Hospital,

the only psychiatric hospital in the Nation to exclusively treat children and adolescents with mental illness, and they do a remarkable job. Yet that hospital and that system of care for adolescents

and children is under great pressure and great stress.
6

In many cases, we are failing the children of this Nation when

it comes to providing effective mental health services, and that is

a problem that we will not only regret, but suffer for many decades

going forward as these children mature into adults.

Ann Buchanan, as Senator Kennedy pointed out, will tell the

story of her son Rusty, who experienced the problem of ‘‘aging out’’ of the system, being in that awkward transition from an adolescent

mental health care system into the adult system, and that transition is difficult and in some places impossible.

But again, I hope we can rally the support and, as Senator Kennedy said, the will to do what increasingly is clear that we must

do, and that is to fix our mental health care system.

Thank you, Chairman DeWine.

Senator DEWINE. Thank you, Senator Reed, very much.

What we will do for all of our witnesses today is follow a 5-

minute rule, and we would like you to condense your testimony to

5 minutes. We already have everyone’s written testimony, so if you

could just condense it to 5 minutes, that will give us an opportunity to ask some questions.

Dr. Mayberg, thank you for joining us.

STATEMENTS OF STEPHEN W. MAYBERG, COMMISSIONER, THE

PRESIDENT’S NEW FREEDOM COMMISSION ON MENTAL

HEALTH, SACRAMENTO, CA; AND CHARLES G. CURIE, ADMINISTRATOR, SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND

HUMAN SERVICES, WASHINGTON, DC

Mr. MAYBERG. Thank you, and good morning, Mr. Chairman and

subcommittee members.

I am Stephen Mayberg. I have submitted written testimony, and

I think all of you have clearly articulated many of the issues and

what brings us to this position. I will speak to you from my position as a commissioner on President Bush’s New Freedom Commission on Mental Health and as director of the California Department of Mental Health, arguably the largest public mental health

system in the United States.

As you know, there were 15 commissioners on this committee,

the first group representing States, elected officials, constituency

groups, family members, and consumers. There were seven ex officio members and representatives from Health and Human Services

as well as HUD, Labor, Education, and Veterans’ Affairs.

We were charged with looking at the public and private mental

health system and the issues that led to the failures in our system,

or the system in shambles, as we reported in our annual report,

looking at three particular issues—stigma, fragmentation, and the

disparities in private insurance between health and mental health.

We focused in on fragmentation.

The charge was to complete this in 1 year. We found that the

work was overwhelming and was more than we could handle in a

year, but that did not stop us from holding monthly meetings and

having two field visits, one to Los Angeles and one to Chicago.

We discovered that the issues are tremendously complex and not

easily articulated in a short period of time. We had feedback from

the public, from written testimony, expert testimony, invited testi-
7

mony, as well as reading voluminous amounts of material. We

broke into 16 subcommittees because we could not get a handle on

that and focused on specific issues like children’s services, older

adult services, the interface with the criminal justice system and

the interface with the physical health system, cultural competence,

acute care—all kinds of things like that.

What we came up with after 6 months was that it was in our

minds true that the system was broken and needed to be transformed, not reformed, that services were fragmented for children

and for adults, and for older adults, services were almost nonexistent, and there was a disproportionate amount of burden on us in

terms of disability and employment of persons with serious mental

illness.

In July, we submitted our report with a series of goals and recommendations and a vision that mental health needs to be a higher priority, that there should be a time in our future when mental

illness can be prevented or cured, but every American deserves access to adequate treatment and support.

Let me quickly discuss the key goals and recommendations that

we have made. First, we found that if we are to transform mental

health care, our programs, from the Federal level to the community

level, must shift toward consumer and family-driven services. Consumer needs and preferences—not bureaucratic requirements— must drive the services that they receive. To achieve that goal, the

Commission recommends specific changes in Federal programs and

upgraded State responsibility for planning effective services.

Second, we observed that the members of minority groups and

people in rural areas today have worse access to care. ‘‘Place and

race’’ does matter. Further, they often receive services that are not

responsive to their needs. As a result, the burden of mental illness

is heavier for those individuals. The Commission urged a commitment, again, from the community up to the Federal level to services that are ‘‘culturally competent,’’ acceptable to and effective for

people of varied backgrounds.

The Commission’s review further found that too often, mental illness is detected late, not early. As a result, services frequently

focus on helping people live with considerable disability rather

than on intervening early, which nearly always yields better outcomes, with less disability, and a better opportunity for meaningful

life in the community.

Thus, we recommend a dynamic shift in care toward a model

that emphasizes early intervention and disability prevention and,

as our report stated, ‘‘Early detection, assessment, and linkage

with treatment and supports can prevent mental health problems

from compounding and poor life outcomes from accumulating.’’

Achieving this goal requires better and more extensive engagement in education of first-line health care providers, primary care

practitioners, but also demands a greater focus on mental health

care in institutions such as schools, child welfare programs, and

the criminal and juvenile justice systems. The goal is a system of

integrated community-based care that can screen, identify, and respond to problems early.

The Commission also noted that a majority of adults, even those

with the most serious mental illness, want to work but are held
8

back by poor access to effective job supports, incentives to remain

on disability status, and employment discrimination. That, too, can

be changed.

We also recognize that there is a gap between what we know and

what we do, and there is a 15- to 20-year science-to-service delivery

gap. We need to move our system forward where we use what we

have learned in practice rather than leaving it in the journals, and

that means changing our incentives to pay for that but also changing our training programs to make sure that people are educated

appropriately in the latest state-of-the-art, state-of-science, services.

Finally, we feel that it is incumbent upon us to move into the

21st century and use the power of information technology more appropriately. We need to look at how to use patient records in ways

that both protect privacy but use technology so that people get appropriate and adequate care and do not have to reiterate their

issues time and time again.

We understand that the majority of Americans go to the Internet

to look up issues of their disease, and we need to be able to put

that in a usable form for most people when they find out that

someone in their family or they themselves are suffering from a

mental illness.

With these recommendations, our work is done and the work of

all the rest of our advocates, friends, and policymakers begins. We

truly believe that we have a blueprint for change. We hope that

through a series of hearings like this and through the advocacy of

all those in the mental health community, we will be able to

achieve that change.

Thank you very much.

Senator DEWINE. Dr. Mayberg, thank you very much.

[The prepared statement of Mr. Mayberg may be found in additional material.]

Senator DEWINE. Mr. Curie?

Mr. CURIE. Thank you, Mr. Chairman, Senator Kennedy, Senator

Reed. I am honored to present on the President’s New Freedom

Commission on Mental Health and the administration’s activities

to achieve the goals contained in the Commission report.

I would also like to request that my written statement be submitted for the record.

First, I want to thank my friend and colleague, Steve Mayberg,

for his contributions to the Commission’s work. He is a great leader

in California, and he was a tremendous leader and member of the

commission.

I also want to recognize the leadership demonstrated by Michael

Hogan, the director for mental health from Ohio, who was unable

to be with us today, but he was chairman of the President’s Commission, and Mike’s steadfast commitment to do what is right for

people with mental illness steered the Commission through many

tough decisions and ultimately led to the final report which we are

here to discuss today.

An important context for our work in the Bush Administration

and the recommendations developed by the Commission is the

words of people in our service delivery systems working to obtain

and sustain recovery. In particular, the first position I held as a
9

new master’s of social work graduate in a branch office in Fostoria,

OH was working as a therapist to help mental health consumers,

individuals coming out of at that time Tiffin State Hospital to

make the transition back into the community. This aftercare group

included consumers who had spent over a decade in the hospital.

I asked them the question what they needed to make their transition successful and what they needed to deal with and manage

their illness. They never spoke in terms of programs, they did not

speak in terms of needing a psychiatrist or even a social worker,

but what they spoke of was that they needed a job, a home, and

meaningful personal relationships—or, to use a direct quote, ‘‘I

need a life, a real life; I need a job, a home, and a date on the

weekend.’’ They want a life, a real life with its rewards.

This is the very essence of the recommendations contained in the

final report of the President’s New Freedom Commission. It is a

privilege to serve President Bush and work for Secretary Tommy

Thompson, as this is an administration that knows treatment

works and recovery is real.

As you may know, SAMHSA has been given the lead role to conduct a thorough review and assessment of the final report of the

President’s New Freedom Commission on Mental Health, with the

goal of implementing appropriate steps to strengthen our mental

health system.

The ‘‘Mental Health System Recovery Plan,’’ if you will, will require the implementation of a ‘‘To Do List’’ currently being developed by SAMHSA on behalf of the Bush Administration. The ‘‘To

Do List’’ will form an action agenda to achieve transformation of

mental health care in America. And I am very fortunate to have

a lead staff person whom I have asked to address this internally

for developing this action agenda, and she is Kathryn Power. Kathryn recently joined SAMHSA as director of our Center for Mental

Health Services—she is standing up behind me—I was going to say

we stole Kathryn from Rhode Island, but it benefits us greatly, and

it is going to benefit the Nation greatly. She is working to develop

an agenda for transformation that is built around the six goals and

19 recommendations contained in the Commission’s report.

To lead the effort, I have assembled a transformation task force.

We are already working with relevant Federal agencies to determine ways to provide States the flexibility needed and the incentive to bring to bear the full force of the resources available to meet

the needs of people with mental illness.

Our agenda must be consumer and family-driven, not bureaucratically bogged down. Consumers of mental health services and

their families must stand at the center of the system of care. Consumer and family needs must drive the care and services that are

provided. The result will be more of our family members, coworkers, neighbors and friends living that rewarding life in their communities that I talked about in the beginning of my remarks.

In closing, we all need to recognize the changes that need to be

made will not happen overnight. But what we structure, what we

begin to pull together to develop this ‘‘To Do List’’ must assure that

we keep pressing onward. Developing and implementing the action

agenda for transformation will be an ongoing process. Clearly, our

success will depend on our ability to span all levels of government
10

and the private sector to align and bring to bear the full force of

resources available. The strategy will be to keep our focus on the

needs of adults with serious mental illnesses, children with serious

emotional disturbances and their family members. The goal is to

make recovery a reality for everyone.

Thank you for your time and interest in our work, and of course,

we would be pleased to answer any questions you may have at this

time.

[The prepared statement of Mr. Curie may be found in additional

material.]

Senator DEWINE. Mr. Curie, thank you very much.

The ‘‘To Do List’’ that you are working on, again, when do you

think that will be completed, and give us some more ideas about

what you are looking at.

Mr. CURIE. Sure. We have actually begun working on the ‘‘To Do

List,’’ and we anticipate having a first draft of the document which

describes our activities and immediate plans within the next 60

days. And again, we will have ongoing discussions with the committee as we are in the process of developing that.

Senator DEWINE. And in 60 days, we will be able to see that?

Mr. CURIE. Yes, yes. And in fact, what we will be doing in the

meantime—at this point, some of the things that we are actually

doing include conducting an inventory of those things that already

are being implemented and being worked on within the Federal

Government around the goals of the Commission. For example,

there is a national suicide prevention plan that has been in the

process of being developed over the past 3 to 4 years. We are looking to bring that into an action plan which would be relevant to

achieving Goal 1, that mental health is essential to health and that

we raise the awareness of mental health in this country, tying it

to health, and have a real focus on suicide prevention and a multifaceted approach to raising the awareness of what mental illness

really is and what society needs to be doing to begin to address

that.

We are also pulling together a transformation task force in which

we bring aboard the Federal agencies. Steve mentioned those agencies in his testimony. Not only, of course, will SAMHSA and HHS,

with CMS, be involved with that, the National Institutes of Health,

NIMH in particular, and ACF, Children and Families, within HHS

and HRSA, but also HUD, Labor, Education.

Recovery is going to be framing this ‘‘To Do List.’’ If we are looking at recovery, that is facilitating the process of helping people

learn how to manage their illness and be able to manage their life

and get that life. That is the end game.

Access to treatment is critical. Access to care is critical. Having

the latest evidence-based practices and having incentives out there

which will be part of this ‘‘To Do List’’ and how we work with financing and Medicaid to do that is going to be critical. But along

with that, we also want to make sure that all the entities—and I

did not mention Justice, but Justice will also be part of this task

force—are helping people understand in general, particularly people with serious mental illness in their families, that we are here

to help them build a life, because we also know that that prevents
11

relapse. We also know that ultimately, if you attain and sustain recovery, you are also overcoming that disability.

Senator DEWINE. Let me move if I could, because we do not have

much time, to a follow-up to what Senator Reed said in his opening

statement and that is an area that I think troubles all of us, and

that is the whole problem with young people who have mental

health problems. We are going to get into this further in this committee—in fact, we are going to hold at least one hearing on the

whole issue of suicide among young people, and we are going to do

that fairly shortly in this committee, and I think we will probably

have another whole hearing just on mental health issues of young

people—but let me ask both of you this. What is in this report that

we should know about in the whole area of young people’s mental

health problems? Maybe another way of asking the question is,

how are we doing as a country? How are we doing, what are we

not doing, and what do we need to do? I am going to ask the second

panel the same question.

Mr. MAYBERG. We are not doing very well, and the reason we are

not doing very well is that first, the system is fragmented. Parents

say to us time and time again, ‘‘We do not know where to get care.

The system is opaque’’——

Senator DEWINE. Where do I go.

Mr. MAYBERG [continuing]. Where do I go, whom to ask—and if

I do ask somebody, they send me to somebody else, so that care is

not coordinated.

We realize that our interventions with children are oftentimes

many years after they have first exhibited symptoms, and by the

time we intervene, many, many bad things have happened so that

they have lost critical developmental milestones because they are

struggling with the issues of their illness.

We have to provide more active outreach into the schools because

children are in schools. Most kids are first seen by their primary

care providers. We need to work out a system where our interface

with primary care is much better. And we do a very, very poor job

where our most disturbed kids are. We do not do the same kind

of active outreach into the child welfare system and into the juvenile justice system like we should do.

So in summary, we are not treating the early end of it or the late

end of it, and the system is opaque. So our recommendation is

much more of a public health-type recommendation where we need

to do earlier intervention, better identification, more empowerment

of families to be able to move the system forward.

Senator Reed talked about issues of transition and where kids

move out. We have two distinct systems. When someone graduates

from our children’s mental health system, a whole set of new rules

and obligations occurs, and we lose them. We have invested lots of

energy, and then they start all over again in the adult system.

Mr. CURIE. I could concur with everything Dr. Mayberg shared.

Clearly, primary care linkage is critical because kids are seen there

more frequently than in any mental health setting initially; also,

school-based—and those are clear recommendations. Keeping the

child with the family—you brought up earlier the issue around custody, and we need to address that. Parents should not have to give

up custody of their children in order to receive mental health serv-
12

ices, and we need to address that as part of this action plan. It is

unacceptable.

Also, a systems of care approach is important. We do have a

track record through the Center for Mental Health Services of

SAMHSA in which we have had over the past decade the establishment of systems of care which we see better outcomes—that is,

making sure that all child care and child-serving agencies within

a neighborhood are working to the benefit of a child. The reason

that children’s issues are so complex is because you are talking

about multiple systems which engage children, and we need to

make sure there is a consistent way of doing that.

One other example I would give of why early intervention and

also applying what we know—and I think that with children, taking the science of what we know and making sure it is in the delivery system is critical. When we talk about people with co-occurring

disorders, and we are seeing now that one out of every five adults

with an addiction, according to our latest household survey, also

has a serious mental illness, we now know that there is a window

of opportunity in those teen years that when a mental illness is beginning to emerge, and kids begin experimenting with drugs, that

is many times the beginning of a co-occurring disorder. We can intervene earlier and have a full assessment done. If a teenager, for

example, is presenting himself because he is using drugs, make

sure there is a full assessment done; is there an emotional disturbance or a mental illness involved in that situation? If you intervene

in that window of opportunity in the teen years, you can give an

individual years of a life in their twenties because you are treating

them for the underlying disorder. We need to make sure that that

is the expectation.

Senator DEWINE. Senator Kennedy?

Senator KENNEDY. Thank you.

I thank both of you for enormously powerful and distressing testimony. Just on this issue of what you call co-occurring disorders,

what is SAMHSA doing now to try to deal with that?

Mr. CURIE. I am glad you asked that question, Senator. It is a

top priority for SAMHSA. We submitted approximately a year ago

a report to Congress on co-occurring disorders which offers a 5-year

blueprint of how we can begin implementing a partnership with

States, in particular, a structure which will bring the assessment

of co-occurring disorders and treatment as part of the expectation

of what we do.

We are in the process of awarding grants. This year, we are

awarding grants to seven States, called our COSG grants, to Governors’ offices, so that a Governor’s office can bring together not

only the mental health authority and the drug and alcohol authority, but the criminal justice authority because of the high rate of

individuals in the criminal justice system with untreated co-occurring disorders.

We are also providing ongoing technical assistance. We have had

a National Summit on Co-Occurring Disorders, and we are working

very actively to raise it with the professional associations as well

as the State mental health and drug and alcohol authorities. We

are working in close partnership with the National Association of

State Drug and Alcohol Directors as well as the National Associa-
13

tion of State Mental Health Program Directors to see to it that

States have what they need to address this issue.

And I think for the first time, the most significant thing is that

we have been able to quantify the issue. The household survey that

we do each year now has a mental health component, and to be

able to clearly show that one out of five people with an addiction

or an abuse dependence problem has a serious mental illness—that

is not just a mental health diagnosis, that is a functional assessment—tells us that it has got to be every door being the right door

when you come to a treatment door, whether that be primary care,

whether that be a mental health door or a substance abuse door.

Senator KENNEDY. Is this with regard to children; did the survey

look at children, too?

Mr. CURIE. The household survey does include those 12 to 17, so

we are able to capture the teenage population, yes.

Senator KENNEDY. Let me ask you, Dr. Mayberg, your Commission report strongly supports Federal legislation for mental health

parity; is that correct?

Mr. MAYBERG. That is correct.

Senator KENNEDY. Do they also make a recommendation with regard to Medicare, that we ought to do something to address that

issue?

Mr. MAYBERG. One of the important issues that we looked at was

the whole issue of financing, and we did make a recommendation

that any time there are discussions about Medicaid reform or Medicare reform, that mental health needs to be at the table and not

be an afterthought. And there are some specific recommendations

about particular issues that should be addressed when that discussion occurs, such as parity in Medicare, such as prescription drug

costs.

Senator KENNEDY. Your earlier outline about the fragmentation

and how families are trying to deal with this and are lost in trying

to get a handle on it includes stories that we hear time and time

again, and our failure to try to systematize this is one of the great

public policy failures, I believe. And part of it is getting the framework and second is to get the resources out there.

How can we change the consumer-driven—most mental health

services are controlled by managed care where choice is limited. We

run up against this kind of challenge as well. How can we deal

with this?

Mr. MAYBERG. We have several recommendations for how to deal

with this. One, with the transformation, States need to take a more

active role in developing a plan of care, and that means not just

mental health, because mental health does not provide the majority

of care for children or for adults, as it turns out, so we need to look

at ways that States can plan the delivery of care, and there need

to be some kind of incentives to be able to do that, to break down

the silos.

Senator KENNEDY. Which States are doing that? Are any of them

doing that now?

Mr. MAYBERG. None of them is doing that right now.

Senator KENNEDY. Well, this is the challenge you give us—to try

to set an overall framework at the Federal level, but you want the

flexibility within the States. I do not know what we are hearing
14

about how the States are going to use the flexibility to try to deal

with the range of different issues and problems in terms of the

prisons, child welfare. We have a great debate about health clinics

in schools, and the basic reason that we do not have health clinics

in schools is because people are concerned about the distribution of

condoms. That is basically the reason. And we see what the loss

is in terms of being able to work—some schools get around this,

and I can tell you a dozen different schools in Massachusetts where

it makes an enormous difference. They do have the health clinics,

because they have worked the arrangements out with the local hospitals and so on, and it makes an enormous difference.

But what can you tell us about how we are going to as a society—is it resources, is it public policy? Here we are now. You have

studied this thing. What are the real roadblocks in trying to get

through this? We want you to knock hard on our door. Is it resources? Is it the willingness to deal with it? Is it the entrenched

interests? Where does the responsibility lie—and if it is with us, we

want to hear it.

Mr. MAYBERG. Senator, I will knock hard, and I think you addressed all of the issues. Part of it is a comfort with status quo.

Part of it is a lack of knowledge. Part of it is bureaucratic silos that

we have where there is an unwillingness to think about new ways

of doing business. And part of what we really are looking at in our

consumer and family-driven system is that the persons who are

most disenfranchised are the recipients of service, and the more we

can give them information and empower them, the more we can

hope that there can be some pressures from a grassroots point of

view to force these changes. I think that we make a mistake in our

bureaucracies from not listening to that grassroots message. It certainly was true in California, not listening, that voters were feeling

disenfranchised. And I think that consumers and family members

are very disenfranchised right now. The more information we can

give them, the more they can attack the bureaucratic and policy

barriers that stop us from delivering quality care.

Senator KENNEDY. My time is up, but could I just ask you one

question. We have a prescription drug bill that is in conference

now. Can you make any kind of assessment about the people who

know they have a problem, are trying to get prescription drugs for

mental health and just cannot get them because of income limitations? Can you make a quick assessment? As I said, my time is up,

but can you tell us now, or do you want to submit that?

Mr. MAYBERG. From a quick point of view from my perspective

of analyzing the pharmacy debt in California, 70 percent of all prescriptions written are by primary care—they are not written in

mental health. So if it is not covered on the formulary, they are not

going to get the services.

Half the people that we see are not eligible for Medicaid coverage

for their medication, and they do not get it on Medicare, so many,

many people do not get needed medications because of insurance

or formulary restrictions.

Senator KENNEDY. Thank you very much.

Thank you, Mr. Chairman.

Senator DEWINE. Senator Reed?
15

Senator REED. Thank you very much, Mr. Chairman, and

thanks, Charles, for identifying Kathryn Power. I am working on

one cup of decaffeinated coffee, so I did not recognize her—and you

are right—you did in fact steal her from Rhode Island, but it was

good for SAMHSA, and we in Rhode Island are making do without

her. And Bill Emmett who is also here today is from Rhode Island,

too. He is a long-time advocate for families with mental health

issues. Thanks, Bill for your work.

Let me just address a question which you both alluded to based

on the questions of the chairman and Senator Kennedy, and that

is, the problem with transitions. In the juvenile justice system, you

are getting care and then, suddenly, you are released, and the good

news is that you are out of some type of incarceration, but there

are no services. We just throw these young people, typically young

male adults or teenagers, back into the same environment, with no

support system, after they have made some progress. In fact, in a

way, it is cruel, because they are beginning to learn to adjust and

cope, and then they are out the door again.

There is another area of transition, and that is increasingly, college students, who may be getting support at home, may be receiving health care under the family plan, they go off to college, confront a whole different world, and we are seeing remarkable rates

of suicide among college students.I know that NYU is not alone,

but in the last several months, there have been three major incidents there.

It seems to me that one of the problems with the system—and

you have alluded to it, and perhaps you can do more—is these

transitional points and how do we address the transitional points

where it seems to be really broken.

Dr. Mayberg first, and then Mr. Curie.

Mr. MAYBERG. Thank you, Senator.

Part of the difficulties we have in transition have to do with the

silos that we talked about, the bureaucratic silos, and part of it has

to do with regulatory and statutory limitations that contribute to

that. For example, with children in the juvenile justice system, if

you are ‘‘incarcerated,’’ you lose your eligibility for Federal participation, so that oftentimes, mental health systems drop out and are

not engaged in doing case management or care management. The

person shows back up in the neighborhood, and the system is really

clueless about what is happening.

The same thing is true in terms of rules that determine eligibility for children up to the age of 18, and when they move away

and go to college, they lose their eligibility. Too often, our system

becomes driven by funding streams rather than by consumer or

family needs. So if we look at ways to deliver the services instead

of following the dollar, we probably are going to do a better job.

Senator REED. Charles?

Mr. CURIE. I would also add, Senator, that transitions—and

framing it that way, I think, is very helpful, because you are exactly right—that is where many people fall through a crack, where

the system has failed individuals not only in your example of the

young person going to college and that being a transition and is

there going to be coverage for them and accessibility of care, but

also in the public health sector, not only the juvenile justice sys-
16

tem, but also the children’s mental health system. There are States

that have very good children’s mental health systems but still have

not mastered the transition of that child going into an adult system

of care.

I do believe that what the action agenda needs to address as far

as the recommendations of the Commission is to assure that for the

first time, we have a coherent, cross-systems mental health agenda

at the Federal level, with all those departments and entities I mentioned earlier at the table in agreement that they are going to be

giving a consistent message to their counterpart agencies at the

State level and that we put incentives in working with the States

and provide the assistance so that every State has a cross-systems

mental health agenda and plan.

Right now, the only plan that States are required to submit

around mental health is around the block grant. That is submitted

from the State mental health authority to SAMHSA. Our block

grant constitutes less than half a billion dollars across the States,

while we have Medicaid that is in the mid-$20 billion, and we have

a juvenile justice system and an adult justice system that is providing services within the walls and getting into mental health and

behavioral health care.

If we can get that aligned and require a real plan from the

States, that would be profound and I think set the stage to be able

to deal with the silos and to be able to address transitions in ways

that we have not been able to address them before.

Senator REED. Do you need additional statutory authority to

prompt this comprehensive planning?

Mr. CURIE. We are examining that right now. We believe right

now that if we use our State incentive grant model that we have

used for substance abuse prevention and that we are using now for

co-occurring disorders, award the dollars to the Governors’ offices,

and we are also discussing with NGA, that the Governors would be

able to bring together those folks. Right now, the good news is that

within the administration, all the agencies that I mentioned earlier

have agreed to send not only principals but people who are going

to roll up their sleeves and do the work for each of those agencies

to hammer out such a plan.

So if we set the stage and get rolling with it, one goal will be

how do you institutionalize that long-term.

Senator REED. Thank you very much, gentlemen. My time has

expired.

Thank you, Mr. Chairman.

Senator DEWINE. Thank you, Senator Reed.

Senator Murray?

Senator MURRAY. Mr. Chairman, thank you very much for having this hearing and for all the work of the Commission. I think

this provides a very good road map for ways that we can improve

our country’s mental health services, and I think it clearly identifies some of the significant gaps in access and coverage and quality

outcomes, and I hope we can use this report as a call to action.

Mr. Chairman, I especially appreciate your focus on children, and

Senator Reed and Senator Kennedy as well—I think all of us are

deeply concerned about where that is going—and your commitment
17

to hold additional hearings on how we can address some of those

inequities, and of course, the Commission’s report as well.

Senator Reed and Senator Kennedy both mentioned mental

health parity. It is an issue that has raised its head here a number

of times. The Commission has addressed it. I think that is one of

the reasons why young people have trouble getting access to mental health care as well, is the mental health parity, and if you could

just reemphasize for all of us the importance of that, I would appreciate it.

Mr. CURIE. Absolutely. The Commission, of course, has some very

strong statements in its findings that the issue of parity is going

to be part of the fundamental transformation, that if a parity bill

passes—and again, the Commission supported the President’s position on endorsing and supporting parity—it will greatly help access, especially those employees who have coverage, to make sure

that children who have emerging serious emotional disturbances

can receive the treatment they need.

We think it is also tied to developing a system that can address

in an early way interventions as well.

Also, there is the issue of the data. There are a variety of studies

now that have come out that have demonstrated that those States

that have adopted parity have done so in such a way that it has

been at a minimal cost and yet the benefits, which we are still

studying, are very encouraging.

So again, the Commission supports the President’s position on

parity, and we do believe that you pay for it sometime, I guess is

another way of looking at it, and if you are not paying for it early

on to do the right type of treatment, the costs are even greater economically, but most importantly, profoundly, the human cost is tremendous.

Senator MURRAY. Thank you, and I appreciate the recommendation on that.

I did want to ask this. The Commission’s report does address the

current geographic inequities in access, and it paints a pretty dim

picture for our rural communities. I know that in my home State

of Washington, almost every county has been deemed a mental

health profession shortage area, so for patients, that means that

even if we had mental health parity, getting access is almost impossible.

One of the Commission’s recommendations is greater access or

greater use of technology to reduce some of these access problems.

In Washington, we are working to integrate telemedicine into rural

communities to expand access to mental health treatment.

There are a lot of difficulties in implementing technology. One of

them is reimbursement. I would like you to comment on how we

are going to address that issue, because it seems to be one of the

blocks that we have in trying to move forward on this.

Mr. CURIE. Goal 6, one of the six major goals, is technology, and

the link to remote areas was made in terms of the use of telehealth. Clearly, as part of this action agenda that I described earlier, we are going to be looking at aligning financial incentives in

a way to realize those goals, recognizing that in remote areas, we

need to take a multifaceted approach. We need to look at technology not only in terms of linking professional help directly to con-
18

sumers and families but also the use of technology in individuals’ lives so that individuals can have access to information and care.

And we have not exploited that opportunity enough and need to do

that in this process.

So a major focus will be the alignment of financial incentives to

determine what are the types of interventions and what are the

types of tools that individuals need to have available to them in

order to attain and sustain recovery, so that will be a major focus.

The other thing I might mention is that when it comes to the

issue of dealing with rural and remote areas, it is also a workforce

development issue, and we need to look at how to give incentives

to professionals to live in those areas, have partnerships with the

academic institutions. It will be a multifaceted approach that we

are going to have to take.

Senator MURRAY. Well, again, specifically, how do you recommend providers are reimbursed and host sites reimbursed for

training and equipment? That seems to be one of the barriers to

using technology in our rural communities.

Mr. CURIE. I think we need to examine how we begin to look at

those as being real interventions in ways that we have not looked

at them before and determine how they can be financed. I think we

need to examine what are the barriers——

Senator MURRAY. So you are not ready to make recommendations?

Mr. CURIE. We are still in the process of examining just how

those recommendations can look, but we are working—I cannot say

enough good things about CMS and how they were at the table

throughout the whole Commission, how they committed themselves

through this action agenda—and we are examining ways in which

we can align the financing and have the incentives in the right

place to realize the goals of the Commission.

Senator MURRAY. Thank you very much, Mr. Chairman.

Senator DEWINE. Thank you.

Senator Kennedy—excuse me. Senator Clinton?

Senator CLINTON. I would be happy to listen to Senator Kennedy.

[Laughter.]

I want to thank the chairman for this important hearing, and I

do want to thank Senator Kennedy for his lifetime of commitment,

along with his family, to many of these issues.

I also really want to congratulate and thank the Commission. I

think this is a very significant piece of work, and my greatest fear

is that nothing will come of it. We have been down this road before.

We deinstitutionalized people. We created drug regimens. We have

done a lot to try to deal with the problem on the margins and in

the silos, and your report convincingly and movingly illustrates

how far we have to go.

I would hope that you would use this committee, particularly

people like the chairman and Senator Kennedy, my colleagues,

Senator Reed and Senator Murray, who have both a wealth of experience and a real commitment to try to figure out what legislative, regulatory, and appropriations strategies will work, because

otherwise, I am afraid that we will go down the path of sending

a lot of money out to Governors’ offices, telling them to get everybody together, asking them to please come up with results, and we
19

will be here 5 years or 6 years or 7 years, with not much to show

for it, and the situation will continue to deteriorate.

So I really do urge you to be very forward-leaning in your efforts

to try to get the support that you need, and perhaps even pick a

couple of States and pour everything into them so that you can

make them laboratories and we can look.

I know the work that Mr. Curie did on Medicaid managed care

for substance abuse was excellent work in Pennsylvania, and partly

because of funding cutbacks and budgetary pressures, a lot of that

work is not going on elsewhere and has even been taking some hits

in Pennsylvania. And I know the work that Dr. Mayberg did in

California was really essential in trying to rationalize such a huge

system.

But I can just see what is happening now—as State budgets are

cut, a lot of the advances that individual States made in the nineties are being undercut.

There are a couple of startling findings or conclusions in your report, but one that just really got to me was that the very first goal

and the very first point you make is about suicide and the fact that

suicide ranks as the leading cause of violent deaths worldwide

came as a surprise to me. Amidst all of the other priorities that you

are talking about, the fact that you put that as number one I think

says a lot. But what can we do—while we are looking at revamping

the system, creating better transitions, providing better financial

incentives, is there anything specifically that can be done to address suicide, or is it something that is just embedded in the whole

range of problems, and we really cannot take it out and deal with

it separately from everything else you are recommending?

Dr. Mayberg?

Mr. MAYBERG. We put that first because it is one that actually

is something we can do something about. We were shocked by our

benign neglect of this huge problem. Thirty thousand Americans a

year die of suicide, and we do not address the issue. And clearly,

when we focus in on suicide prevention programs, the results are

dramatic.

A recent study suggested that just having primary care providers

asking a person, ‘‘Have you considered suicide?’’ reduces the suicide

rate by 29 percent—one question.

The Air Force focused in on it and dropped their suicide rate by

almost 50 percent.

So just putting it as a priority of our mental health system to

focus in on this national tragedy—as you said, twice as many people die of suicide as of homicide.

Mr. CURIE. I would say the answers to your questions, can we

do it directly or is it embedded, are ‘‘yes’’ and ‘‘yes.’’ I think there

are things that we can do directly, and I think Steve has described

some of those efforts.

Also, when you take a look at the other roles—early intervention,

the linkage to primary health care, having mental health programs

available in the schools where we can interview early—all of these

can play a role and have been demonstrated in an evidence-based

way do play a role in reducing suicide.

But again, they are not systemic, they are not systemwide, and

they are not the natural way we are doing things, and much of
20

what we need to be doing is making sure that we have early intervention available, we have access to care where people present

themselves, particularly children and youth.

Also, it is going to take a public-private partnership. The private

sector has come forward and foundations have come forward identifying this as an issue, and I think government and the private sector need to come together on both a national suicide prevention

strategy as well as overall awareness of mental health and anticipate that that will be part of our action plan, getting that process

rolling.

Also, health classes, education—if we can begin educating kids in

the health classes about depression and mental illness early on,

just as we educate them about having a healthy diet, I think that

stressing that more is going to be another aspect.

Senator CLINTON. I certainly hope we can move on that. I am

deeply concerned about it.

I also wanted to ask is it fair to say that in many ways, we

desintitutionalized during the sixties and seventies, and we incarcerated during the eighties and nineties? In looking at the numbers

just for New York, the Mental Health Association shared with me

some very frightening statistics. In 1955, there were 550,000 people

with mental illness in State mental hospitals. In 2000, there were

870,000 persons with mental illness incarcerated—three-tenths of

the population in 1955, three-tenths of the population in 2000.

We shut down a lot of the mental health institutions for good

reason, we never made good on the promise of community-based

services, and we have essentially used our prisons as the mental

health institution of last resort.

What can we do about the prison being the new back ward of the

mental health system?

Mr. MAYBERG. We refer to this issue as ‘‘trans-institutionalization.’’ We do not think that all of the people who went from the

State hospital ended up in the criminal justice system, but clearly

one of the contributing factors has been the increase in co-occurring

disorders, that the use of substances and alcohol combined with

mental illness does create a situation where we are more apt to

come in contact with the criminal justice system. So part of it is

doing better screening up front for co-occurring disorders and also

looking at some of the incentives to institutionalize. It is a costshift in some ways. It is cheaper in many instances to put someone

in prison than to put them in a State hospital.

Senator CLINTON. What is the difference in cost, because certainly in some of the high-cost States, it is $30,000 to $40,000 per

prisoner. So what would be the comparable cost?

Mr. MAYBERG. The cost of one of my State hospital beds is

$110,000 a year, so it is three times as much to be in a State hospital. And the cost of being on the street, homeless, when you look

at all the costs of revolving doors and emergency rooms, revolving

door and county jails, is probably $30,000 or $40,000, too.

Mr. CURIE. I would add that before I left Pennsylvania, we did

a survey of the State prisons, and this has pretty much held up nationally with other prison systems. Eighty percent of the individuals in prison had a drug and/or alcohol issue. Over 50 percent

were under the influence at the time of arrest. Twelve to 13 per-
21

cent met the definition of serious mental illness. Ninety percent of

those individuals had a co-occurring substance abuse problem.

The individuals with mental illness typically are getting into

trouble and arrested due to a substance abuse or use issue into the

prisons. Also, we did a study of what we call our CHIPS program

in Pennsylvania to try to derive real data based on what you just

shared, Senator Clinton, the notion of are people coming out of

State hospitals and going to prisons. We found that around one to

two percent of the individuals who came out of State hospitals actually got in trouble with the law, but the mushrooming going on

in the State prisons, the link seemed to be the enforcement of the

drug laws, which does point out the need for us to be partnering

with Justice to determine how we can assure access to treatment,

because there have been many demonstration studies across this

country that have shown that individuals receive treatment for

their substance abuse, they recover, and they do not recommit a

crime, they do not get in trouble with the law, and with the high

percentage of co-occurring, the same is true—if they receive the appropriate treatment, they attain recovery.

So it is the nexus of public health and public safety, and definitely is a focus of the action agenda.

Senator CLINTON. Thank you.

Thank you, Mr. Chairman.

Senator DEWINE. Let me thank both of you very much, and to

conclude on an observation, Dr. Mayberg, I was intrigued with your

exchange with Senator Clinton and your statement that just asking

the question, ‘‘Have you thought about or contemplated suicide?’’ will take that rate down is a phenomenal thing. It strikes me that

the asking of that question by a primary care physician or by someone in the military really, though, is going beyond the mental

health system, or at least in a sense is going beyond the mental

health system, and maybe that is the key.

I am afraid that sometimes, a primary care physician may not

think he or she is in the mental health system, and I think sometimes people in the military certainly would not think they were

part of the mental health system. And maybe the key is for more

people to think they are part of the mental health system, and if

we can do that, maybe we can accomplish a lot more. It is just a

thought; I do not know.

Mr. MAYBERG. That is why we put that goal first. We have made

a fundamental mistake by separating the mind from the body; they

are integrated, and we need to look at persons as a whole and not

separate their behavioral health issues out from their physical

health issues, and it is incumbent upon us as mental health professionals to work with the primary care system and the school system because they are the case-finders, they are the individuals who

can make substantive differences for us.

So we really need to change our focus from the tail-end of the

system to the beginning of the system.

Senator DEWINE. Thank you both very much. We appreciate it.

Mr. MAYBERG. Thank you, Mr. Chairman.

Mr. CURIE. Thank you.

Senator DEWINE. We look forward to working with both of you

in the future.
22

Senator DEWINE. Let me ask our second panel to begin coming

up now, if you will, and I will introduce the second panel as you

are coming up.

Senator Kennedy has already introduced Dr. Paul Appelbaum.

We appreciate you being here with us, Doctor.

Mr. Michael Faenza is the present CEO of the National Mental

Health Association, which works to promote mental health and prevent mental disorders. He is a social worker by training and has

spent the last decade on legislative advocacy to improve mental

health services. He has also spent over 15 years providing direct

service to children and adults with mental disorders. In addition to

his service with the National Mental Health Association, he also

serves on the National Assembly of Health and Human Services

Organization’s board of directors and the National Health Council

board of directors. He was also a member of the planning board for

the Surgeon General’s Report on Mental Health.

Dr. Carlos Brandenburg is joining us today as a member of the

NASMHPD and as the administrator of the Nevada Division of

Mental Health and Developmental Services. Prior to joining the

Nevada Division of Mental Health in 1995, Dr. Brandenburg

served as director of forensic services at the Lakes Crossing Center

for the Mentally Disordered Offender in Reno, NV and as a mental

health consultant at the Sierra Nevada Job Corps Center.

Dr. Brandenburg has also served as a social worker and clinical

psychologist.

Ann Buchanan, our final witness today, is from suburban Baltimore and will be sharing with us the story of her son, Rusty, who

has struggled with depression since the age of 16. Her experiences

in dealing with treatment centers, support systems, and payment

plans place her in a unique position to comment on the New Freedom Commission’s recommendations.

Mrs. Buchanan, you and your son should certainly be commended for your courageousness and perseverance in dealing with

this debilitating disease, and we thank you for testifying today and

for joining with us.

Thank you very much.

Dr. Appelbaum, we will start with you.

STATEMENTS OF DR. PAUL S. APPELBAUM, DEPARTMENT OF

PSYCHIATRY, UNIVERSITY OF MASSACHUSETTS MEDICAL

SCHOOL, WORCESTER, MA; MICHAEL M. FAENZA, PRESIDENT

AND CHIEF EXECUTIVE OFFICER, NATIONAL MENTAL

HEALTH ASSOCIATION, WASHINGTON, DC, ON BEHALF OF

THE CAMPAIGN FOR MENTAL HEALTH REFORM; CARLOS

BRANDENBURG, ADMINISTRATOR, NEVADA DIVISION OF

MENTAL HEALTH AND DEVELOPMENTAL SERVICES, CARSON CITY, NV; AND ANN BUCHANAN, COCKEYSVILLE, MD

Dr. APPELBAUM. Thank you, Mr. Chairman.

I am Paul Appelbaum, M.D., professor and chair of the Department of Psychiatry at the University of Massachusetts Medical

School, where I oversee the largest mental health treatment system

in central Massachusetts.
23

As immediate past president of the American Psychiatric Association, I have been deeply involved in efforts to reform the system

of care for mental disorders and have followed the work of the

Commission closely. When the Commission declared in its interim

report that the mental health system is ‘‘fragmented and in disarray,’’ it struck a chord with mental health professionals and persons with mental disorders and their families across the country.

Let me tell you about the troubling situation in my home State

of Massachusetts.

Imagine that you live in Massachusetts and have become so depressed that you cannot work or care for those who rely on you,

but you are fortunate enough to have health insurance and expect

not to have trouble finding the treatment you need.

When you call a general hospital with a large outpatient clinic

like mine, however, they explain that they must put you on a waiting list of weeks to months in duration. With insurers paying less

than the actual cost of delivering outpatient treatment, hospitals

have been reducing the size of their clinics or closing parts of them

altogether, to the point where the need for services vast exceeds

the supply.

Perhaps next, you try calling a list of private practitioners in the

community who, your insurance company says, are part of their

‘‘network.’’ But many of them tell you frankly that they can no

longer accept insurance coverage because the rates are too low to

allow them to survive. They can see you only if you pay out-of-pocket for the cost of your care. Other clinicians of course do still accept

some patients with insurance, but they too have waiting lists; if

you leave your name, they will call you back—when and if an opening appears.

With time passing and no treatment, your condition worsens.

One morning, you cannot even get out of bed. A worried family

member brings you to the nearest psychiatric emergency room,

itself overwhelmed with people like you who have been unable to

access timely care. Although it is clear by now that you need to be

hospitalized, you wait 7 hours—about average, you later learn—for

an empty bed to be found in a hospital 50 miles away. You are one

of the lucky ones. Other patients, several of them adolescents, have

been living in the emergency room for several days while waiting

for a bed. It turns out that psychiatric units are notorious money

losers in general hospitals, with insurers paying somewhere around

70 percent of the real costs, and that units have been closing

around the State and indeed around the Nation for the last decade.

Your neighbor, with bipolar disorder, who works in a minimum

wage job without insurance, is in an even tougher spot. Community

mental health centers are no longer funded by the State or the

Federal Government to care for uninsured patients and are now

simply turning them away.

Since Massachusetts hospitals have to accept uninsured patients

as a condition of participating in the Medicaid program, when your

neighbor deteriorates to the point of needing to be hospitalized, at

least a bed can be found. But as it becomes clear that she will need

longer-term care in one of the few remaining State hospitals, she

waits for more than a month before the transfer can take place.

And once she is discharged into the community, the continuum of
24

services that she needs—housing, job training, treatment for substance abuse—is stretched so thin that there is no guarantee that

she can access any of them.

If this were the situation only in Massachusetts, it would be a

tragedy but might not warrant the attention of this committee and

the whole Congress. But these scenarios are echoed in State after

State. Given this, it is no surprise that the U.S. Surgeon General’s

Report on Mental Health cited data showing that only 20 percent

of persons with mental disorders receive any treatment in a given

year, and that includes fewer than half the persons with such severe disorders as schizophrenia and bipolar disorder.

Hence, the importance of the Commission’s call for a ‘‘fundamental transformation’’ of our approach to mental health care.

The recommendations in the Commission’s report are, without

exception, helpful. But to be frank, they fall short of the fundamental transformation that is so clearly needed. As president of the

American Psychiatric Association, I appointed a task force to develop a vision of what a genuine system of mental health care

should be. That report, along with my presidential address that

lays out some directions we can follow, has been provided to the

committee.

In short, I suggest that we need to facilitate the integration of

treatment for most mental disorders into the primary care medical

system—a goal that faces numerous structural obstacles today.

And for our citizens with severe and persistent mental disorder, we

must reinvigorate the vision of President John F. Kennedy, whose

Community Mental Health Act of 1963 marked the last attempt to

construct a nationwide mental health system that could care for all

of our citizens.

Finally, while the costs of such a program cannot be ignored, it

can be funded in substantial part from money now spent on jails,

homeless shelters, disability payments, and other efforts to compensate for the failing of our mental health system.

Thank you for your attention, and I would be pleased to respond

to the committee’s questions.

Senator DEWINE. Thank you very much, Dr. Appelbaum.

[The prepared statement of Dr. Appelbaum may be found in additional material.]

Senator DEWINE. Mr. Faenza?

Mr. FAENZA. Thank you, Mr. Chairman, and a special thanks to

you, Senator, for your attention to the plight of adults with mental

illness who are caught in our justice system and kids in our juvenile justice system. After 30 years in the field, I do not think anything is more important than that focus, frankly.

My name is Michael Faenza, and I am the president and CEO

of the National Mental Health Association—I have been in that job

for 10 years—and I am pleased to offer this testimony on behalf of

the Campaign for Mental Health Reform.

We are very excited about this Campaign. It is an effort to advance new Federal policy to make access, recovery, and quality in

mental health services the hallmarks of our Nation’s mental health

system, and that idea is to use the Commission report, which we

are very excited about, as the baseline and the lever to do this

work.
25

The Campaign represents a broad spectrum of mental health

consumers, families, advocates, professionals, providers, States,

counties, and communities, and it is rare that we in our community

have this kind of solidarity with a single purpose. We share a commitment to the vision and goals of the President’s Commission on

Mental Health and are eager to work with this committee to advance needed reforms.

I want to say a special recognition for Bob Glover, with the National Association of State Mental Health Program Directors,

whose vision created this Campaign.

Just a word about myself—I have worked within that 30 years

for years in juvenile justice, public mental health services, vocational rehabilitation, and I have lived with mental health problems

since childhood. Forty years ago, I was a kid who was moved from

classroom to classroom and expelled from schools because of inability to pay attention, was not able to play well with others. I had

a diagnosis of a bipolar disorder as an adult. But I have been

blessed to have the same psychiatrist for 7 years, who found five

medications that worked for me, and my 30 years in the field have

not led with that fact, but I think it informs my testimony.

A true mental health system must bring many systems to the

table, as has been noted—public health and primary care are so

important, as Dr. Appelbaum said; health financing, child welfare,

education, housing, criminal justice, rehabilitation, and employment, to name only the most obvious. And I believe that that will

not happen without Federal legislation and without legislation in

the States. It just will not come to be.

In calling for transformation of mental health care, the Commission has given us a vision that we believe truly can be reached because the science has transformed our understanding of mental illness, given us the tools to diagnose and treat most mental disorders. The Commission’s message that we can build resilience in

the recovery from mental illness is a realizable goal reflects another transformation in thinking about mental illness.

What is needed now is a policy and budgetary commitment to realize dramatic reform in mental health care.

We do appreciate that there are opportunities for mental health

reform at all levels of government, and we recognize the importance of leadership from the Federal Government—the Federal

Government—in advancing change administratively. But administrative action alone cannot align the inconsistent eligibility of requirements of many Federal programs that are critical to providing

benefits, services, and supports needed by many people with mental illness. And administrative measures alone cannot overcome the

limitations, for example, of Medicare mental health benefits, which

fail to provide basic parity and fail to cover cost-effective services

needed to treat chronic mental illness.

This committee in particular can play a vital role in crafting

needed solutions by giving new policy direction to the Substance

Abuse and Mental Health Services Administration. With revision of

its statutory charter, SAMHSA can become a truly effective leader

of mental health system transformation and more closely embrace

the principles of public health.
26

We hope to work with this committee and provide concrete recommendations that will advance the Commission’s goals and

strengthen SAMHSA’s hand in helping achieve them.

I would be remiss in not reinforcing what Senator Clinton said,

that in my 30 years in the field, this is the worst time for mental

health. The National Mental Health Association did a study several

months ago, and there are 23 States that have cut back funding

for public mental health services. We project that within the next

few months, 45 States will cut mental health services. The numbers of kids with mental health problems in juvenile justice settings, adults with mental illness on our streets and in our jails—

these are numbers that are increasing. There is a special irony in

what we are talking about here today and what is actually happening for people at risk and with mental disorders.

Concretely, the Campaign wants to earmark a number of things

that we think are important in legislation and action by this committee. The first is fostering new financing and planning mechanisms to provide effective community-based care to children and

youth with mental health needs. People with mental illness are on

the short end of the stick in terms of interventions for health status and quality of life in this country. Nothing in my experience is

as grotesque as our neglect of children in this country; it is just

shameful.

Second is fostering mental health promotion and early intervention services through school-based mental health care. As an example, the Safe Schools, Healthy Students Program is a collaboration

between SAMHSA, Department of Education, and Department of

Justice. It is underfunded. It is just pilot programs, but it is an example of the kind of integration that could happen at the Federal

level.

We need to advance early detection and treatment for mental

health problems across the age span.

We need to reduce fragmentation in mental health service delivery, including systems for care for children and their families. We

need to make that more than a concept but real, through Federal

leadership for the States.

As mentioned, we need to advance a national strategy for suicide;

we need to foster integration of health and mental health care—

that should be a huge priority for SAMHSA; and, as mentioned, we

need to increase the integration of mental health and substance

abuse.

As the President stated in announcing the establishment of the

Commission, ‘‘Our country must make a commitment.’’ That commitment will necessarily require, we think, dramatic reforms

across a range of government programs. A national system in

shambles requires national Federal leadership a little wary of the

flexibility of the Sates. When we look at Medicaid reform down the

road, we need to be sure that we do not pull the rug out from

under 50 percent of the funding in community mental health services.

We believe it is critical that we embark on this path with an appreciation that mental health has long been dramatically underfunded relative to the impact of mental disorders on the individual
27

and, really, the overall health and quality of life of people in this

country.

We urge Congress to make mental health and the transformation

to a recovery-based system both a legislative and a funding priority.

Again, thank you so much, Mr. Chairman, and I will be pleased

to answer any questions.

Senator DEWINE. Mr. Faenza, thank you very much.

[The prepared statement of Mr. Faenza may be found in additional material.]

Senator DEWINE. Dr. Brandenburg?

Dr. BRANDENBURG. Good morning, Mr. Chairman and members

of the subcommittee.

My name is Carlos Brandenburg, and I am the administrator of

the Division of Mental Health and Developmental Services in the

State of Nevada.

I would like to extend my thanks to Chairman DeWine for inviting me to testify this morning regarding the State of Nevada’s experience and efforts in trying to implement the President’s New

Freedom Commission on Mental Health.

By describing the poor State of the Nation’s public mental health

system, the President’s New Freedom Commission provided an invaluable service not only for millions of people in this country with

mental illness and their families, but also for those of us responsible for administering the programs that are in crisis.

Nevada, notwithstanding our successes, faces many challenges.

At the same time, there has never been a more hopeful time to

take on this challenge, and I am profoundly grateful for the opportunity to serve as my State’s lead on this issue at this particular

moment in time.

Why am I so hopeful? First, we have in the Federal Government

a true partner. As you indicated this morning, Administrator Curie

has worked hard within the administration to help the President

form the Commission, to ensure that it was composed of extraordinary people, and to establish for it an ambitious and achievable

mission.

Second, as you are hearing today, the advocates who stand up for

the mental health community here in Washington, DC as well as

nationwide are organized and prepared to work together like never

before to help the policymakers make the Commission’s vision a reality and see to it that the light shone on this issue is not dimmed.

Third, we are witnessing an unprecedented interest on the part

of Congress, as evidenced by this hearing and the creation of this

subcommittee.

Fourth is the good fortune of the State of Nevada itself. Nevada

was honored that President Bush appointed Nevada State Senator

Randolph Townsend to serve on the President’s Mental Health

Commission. In order to assist Senator Townsend on this, we held

numerous task force and focus group meetings throughout the

State to explore the range of problems and the gaps in mental

health services in our State. This enabled Senator Townsend to

bring to the Commission concrete recommendations for improvements that could be applied both locally and nationally.
28

Further, these meetings and focus groups allowed us to quantify

the degree of unmet need in Nevada and to identify the barriers

that impede care for people with severe mental illness.

During the 2003 State legislative session, Senator Townsend had

the foresight to introduce Nevada State Senate Bill 301, a copy of

which I am submitting along with my testimony. This State law

created the Nevada Mental Health Plan Implementation Commission. The commission is charged explicitly with developing an action plan for implementing the recommendations and goals of the

final report of the President’s New Freedom Commission on Mental

Health. The Nevada Commission must submit a report setting

forth an action plan to Nevada’s Interim Finance Committee, its

Legislative Committee on Health Care, and to Governor Guinn on

or before January 1, 2005.

In all of our deliberations, we are focused on specific recommendations, both policy and budgetary, that will turn the President’s Commission’s national goals into concrete, forward steps in

Nevada.

The Nevada Commission, in addition to providing an organized

mechanism to facilitate comprehensive State mental health planning and policy development, has also been an effective means of

keeping the subject of mental health in the media cross the State

and helping us reduce stigma and increase awareness.

During the course of our meetings, we have been struck by the

fact that too many Nevadans do not know that mental illness can

be treated and that recovery is possible. We have learned about the

large barriers encountered by individuals waiting in emergency

rooms up to 3 or 4 days before they can be hospitalized in our public mental health hospitals. We have tremendous work shortages in

our rural areas; we are having a hard time recruiting and retaining

mental health professionals to work in rural Nevada. In fact, all

the psychiatrists in our rural areas are considered ‘‘tourists,’’ working mainly out of Reno or Las Vegas.

And more important, we need to be more consumer-involved and

consumer-friendly in the delivery of services. Nevada for the last

decade has led the Nation in the rate of suicide. We are determined

to develop a Statewide suicide prevention strategy to work on this

problem.

The Nevada Commission’s efforts have been greatly enhanced by

generous technical support provided by the National Association of

State Mental Health Program Directors, NASMHPD. In conjunction with a grant they received from the Federal Substance Abuse

and Mental Health Services Administration, NASMHPD is enabling us to bring national experts, including members of the President’s Commission, to our meetings. They are providing us with

recommendations of best practices and programs in other areas of

the country that can be implemented in Nevada. This assistance

has been invaluable.

Ultimately, our Commission will show Nevada how to change the

fragmented nature of our mental health delivery system.

This is the last point that I would like to leave with the subcommittee. The ultimate goal of the President’s Commission and,

in turn, the Nevada Commission is ambitious and attainable. Indeed, it is calling for system transformation. The report of the New
29

Freedom Commission on Mental Health identifies the fragmentation of services and financing as central barriers to the effective delivery of comprehensive mental health services and has called on

all levels of government to correct this problem by ultimately establishing in each ‘‘an extensive and coordinated State system of services and supports that work to foster consumer independence and

their ability to live, work, learn, and participate fully in their communities.’’

You have heard about Nevada’s commitment in making this happen, but neither Nevada nor any other State can do this without

significant assistance on the part of the Federal Government. Specifically, we require Federal assistance to both engage in the type

of planning envisioned by the Commission and to implement those

plans, enabling us to fill the tremendous gaps in our service delivery systems for those individuals who are severely mentally ill.

Even in Nevada, where we have been uniquely fortunate to begin

the transformation process, we will not be able to do this without

Federal funding. We hope that the subcommittee, presumably as it

begins its efforts to reauthorize SAMHSA and its programs, will

work closely with the States and the Campaign for Mental Health

Reform to devise a bold program that will provide the support

needed to ensure that the vision of transformation is realized.

Thank you.

Senator DEWINE. Thank you.

[The prepared statement of Mr. Brandenburg may be found in

additional material.]

Senator DEWINE. Mrs. Buchanan, thank you very much for joining us.

Mrs. BUCHANAN. Good morning, Chairman DeWine and members

of the subcommittee.

I am Ann Buchanan of Cockeysville, MD, and I am proud to be

here this morning to share with you the story of my son’s struggle

with mental illness and offer some perspectives on President

Bush’s New Freedom Commission on Mental Health. I would like

to thank you for convening this important hearing and inviting the

unique perspectives of individuals living with mental illness and

their families.

I want to begin by sharing with you the story of my family’s

struggle with mental illness. The story is about my 22-year-old son,

Russell, or Rusty, as we call him. Today Rusty is doing better and

slowly moving on the difficult but uncertain path of recovery. He

has a diagnosis of schizophrenia. He lives in a residential program

at Keypoint in Dundalk, MD.

As a child, Rusty was quite calm, quiet, and a loving child with

no signs of aggression at all. Today he is participating in a program

that will help him acquire skills to begin working soon. He is making slow but sure progress in his recovery. However, it has been

a long way back from 4 years ago when Rusty turned 18.

In 1997, our family suffered a devastating loss when my husband

lost his battle with cancer. Rusty was 16. Shortly thereafter, Rusty

began showing signs of anger—probably normal for a teenager coping with the death of a parent. However, these symptoms grew

worse and resulted in attacks on me. We reached a turning point
30

that eventually resulted in Rusty being admitted to an inpatient

unit.

Within a one-year period of time, he was hospitalized three

times. Things worsened to the point that Rusty had to leave high

school and eventually was placed at Maryland’s Regional Institute

for Children and Adolescents, RICA, in Baltimore. He spent much

of 1998 and 1999 at RICA.

In March of 1999, he was about to turn 18 and was moving toward getting his high school diploma. The staff at RICA made clear

that once Rusty turned 18, he would be an adult and would legally

have the right to make his own decisions. More important, they

made clear that once he turned 18, he would no longer meet the

age criteria, and he would have to transition to the adult mental

health system.

Unfortunately, most of the staff at RICA was not familiar with

how to make this transition. It fell on me to do research and make

contacts with residential programs in the area. What I found was

that most programs had long waiting lists for housing and residential programs. Those without long waiting lists refused to accept

him because of his history of aggressive behavior. At this point, I

was afraid he was going to be sent back home to me, which I was

very worried about because of his prior attacks on me.

Throughout this period in the spring and summer of 1999, I grew

increasingly anxious. More important, this uncertainty put enormous stress on Rusty and compounded his symptoms. During a period when he was trying to finish his high school studies in July

1999, just before returning to RICA after a weekend visit at home,

Rusty attempted suicide by drinking gasoline. This resulted in his

hospitalization, first in the hospital for his medical care, and then

to Shepherd Pratt, and eventually a 3-month stay at Spring Grove

Hospital. This is how he entered the adult mental health system.

I remain convinced that had Rusty been able to seamlessly transition to a housing program, with a treatment plan coordinated by

the adult mental health system, many of these problems in 1999

could have been avoided. However, we were left on our own to

manage this transition, not because the staff at RICA was uncaring

but rather, our struggle stemmed from the fact that neither the

child and adolescent system nor the adult system is held accountable for ensuring that young adults can make the transition.

The sad reality is that thousands of families every year face the

enormous challenge of having their child ‘‘age out’’ of adolescent

treatment and service programs.

It should not come as a surprise to anyone that the course of

mental illness does not magically shift once a child turns 18, 19,

or 20. The symptoms they experience, be it anxiety, depression,

mania, psychosis or paranoia, do not change to fit our mental

health system’s preexisting definitions about what are child and

adolescent services versus what are adult services.

In my view, it is disturbing that the separate child-adolescent

and adult systems struggle so mightily to help adolescents make

the transition into adulthood. This is especially the case with children and adolescents with more severe mental illnesses who are

much more likely to see diagnoses of illness stay with them into

adulthood.
31

Why is the transition so difficult? Children acquire certain legal

rights when they reach age 18, legal rights that can limit the ability of parents and families to get their children the help they need.

Rules governing eligibility for SSI, SSDI, and Medicare and Medicaid shift once a child reaches the age of 18, and eligibility for certain treatment and residential programs may be compromised once

an adolescent turns age 18.

These problems are compounded by complicated and confusing

rules such as Medicaid spend-down. It is rare to find a public agency, whether in the adult or the child system, which will pay for

case management and other wraparound services that can ease

this transition for families.

What must be done to address the complicated issues faced by

consumers and families dealing with the transition from the childadolescent system to the adult system?

The White House Commission Report offers some important findings and recommendations. As this report notes, funding and accountability in our Nation’s public mental health system is needlessly fragmented and complicated. The Federal Government has to

begin working with States and localities to provide more flexibility

while insisting on more accountability for achieving outcomes that

are tied to recovery. Individualized treatment plans for consumers

and their families, as proposed by this report, would be a major

step forward in helping families put in place the treatment and

support their children need before they turn 18 and become adults.

Better systemwide planning, as this report proposes, is critically

important and should involve not just public mental health agencies but also affordable housing, education, and job training.

Finally, I want to comment on findings and recommendations in

the report calling for consumers and families to have greater control over their own care. While this goal is laudable, it will never

be achieved without expansion of family education and peer support programs to help consumers and families learn more about

mental illness, treatment system, and how to advocate for themselves.

I am a graduate of the NAMI Family-to-Family Education Program. I found it to be enormously helpful in preparing me to cope

with my son’s illness and become an advocate both for his recovery

and for improvements in the service system in our community. I attended the Family-to-Family class when Rusty was hospitalized the

first time, and it helped me understand and make contacts to get

me started learning about this illness.

Thank you for the opportunity to talk today.

[The prepared statement of Mrs. Buchanan may be found in additional material.]

Senator DEWINE. Mrs. Buchanan, thank you very much. Yours

is a very, very compelling story and I think a story that is very instructive for us.

Senator Kennedy really wanted to be here to hear your testimony, and he had another commitment, but he did leave a question

which I am going to ask on his behalf for you. This is Senator Kennedy’s question: ‘‘We know that far too many children and adolescents, like your son, who need mental health services do not receive

them. One reason for this is that public schools do not do a good
32

job of supporting mental health. In your own experience, your son

Rusty was forced to withdraw from his high school. How could

Rusty’s school have done a better job of helping him so he could

have remained in school?’’ Mrs. BUCHANAN. Actually, Rusty was always in the special education system of public education, and each year, he would have an

individual IEP plan drawn up. After he was hospitalized, each time

he returned to Towson High School, he had to go through a review

board to see if they felt he was safe to return, and they accepted

him. One day, he made a verbal threat to a student, and then they

really questioned him. They did psychological testing on him, and

Rusty felt that he could no longer attend, so they did provide home

tutoring for him until he could be placed at Hannah Moore School,

which is for emotionally disturbed children. This was just prior to

going to RICA. But Hannah Moore was not equipped to handle his

problems, either, so he went to RICA.

So more psychological testing and attention—at first, we thought

Rusty’s behavior was typical teenage behavior, being argumentative and so on, but it led to much more than that; it was deeper.

After his father died, he was first treated with major depression,

but as time went on, I could see that it was not just from his father’s death, it was more deep-rooted than that.

Senator DEWINE. Thank you very much. Senator Kennedy has a

second question, and I think it does make a good follow-up: ‘‘From

your own experience, what advice do you have for the Senate and

today’s panel about how to help more people like your son by successful and have positive outcomes?’’ You have already touched on that a little bit, but is there anything else you would like to add?

Mrs. BUCHANAN. More education on mental illness needs to be

addressed. Like many illnesses, people do not want to talk about

mental illness, but it needs to be brought forth so that people are

aware of it before it gets too far advanced.

Senator DEWINE. Thank you very much. Your testimony has

been very, very helpful and certainly has outlined for us in very

human terms a lot of the problems that we do have.

Dr. Brandenburg, in your State, how do you currently address

children’s mental health issues, and what kind of help would make

the most difference for your State? What additional help do you

need?

Dr. BRANDENBURG. The State of Nevada right now has a Division

of Child and Family Services that provides mental health services

for children in our State. Like other States, our services for children are fragmented. We are having a hard time providing mental

health services to those individuals who are in the child welfare

system, those individuals who are in the juvenile justice system. So

what we are trying to do is get a handle on that through a legislative subcommittee, trying to find out how to break those various

silos.

Just like Mr. Curie and the subcommittee indicated earlier, at

the Federal level, you have many different funding streams. You

have SAMHSA, you have NIMH, you have Justice, all providing

funds at a different area for different programs. That translates

itself down to the State level, where we have our various silos.
33

So what we are trying to do at the State level is break down

those silos and break down the fragmentation of services, because

kids are falling through the cracks in our State between the time

that they go either from juvenile justice into the mental health system or from the children’s mental health services into the adult

system.

Senator DEWINE. Thank you.

Mr. Faenza, you have outlined in your written testimony as well

as in your oral testimony that ‘‘Among the important issues we

urge this committee to take up and on which we are developing legislative proposals are the following,’’ and then you give a very brief

summary of a number of different proposals.

I take it you are going to develop those further and come forward

to this committee and Congress with very specific legislative proposals; is that correct?

Mr. FAENZA. That is correct. The Campaign partners are determined to bring a lot more flesh to the bones of these concepts and

to very candidly bring those forward. We will also be looking with

a lot of anticipation to Director Power’s game plan to respond to

the Commission report under SAMHSA. But they will be very specific, and there will be a lot of solidarity in the community behind

those recommendations.

Senator DEWINE. We look forward to reviewing your very specific

proposals, so we welcome that. We want to encourage that.

Mr. FAENZA. Thank you.

Senator DEWINE. When you bring them to the committee and to

the Congress, we certainly want to take a look at them.

Mr. FAENZA. We will be anxious to do that. Thank you, Senator.

Senator DEWINE. Very good.

Dr. Appelbaum, in your written testimony you state: ‘‘The recommendations in the Commission’s report are, without exception,

helpful, but to be frank, they fall short of the fundamental transformation that is so clearly needed.’’ And then you continue on.

Do you want to give us the highlights of what you are talking

about? What is lacking?

Dr. APPELBAUM. Senator, the track record of mental health policy

in this country for the last 25 to 30 years has been to address problems of high salience in a piecemeal fashion for a short period of

time, so we become interested in youth suicide or substance abuse

by pregnant women or the problems of the elderly; we develop a

few model programs, we fund them for an initial period, and 5

years later, when the focus has shifted elsewhere, we allow those

programs to be resorbed into the residual mental health system.

The result has been a system that has contracted over time and

failed to provide a comprehensive approach to mental health care.

What I was suggesting in that comment was that merely to continue with a model programs approach such as we have been doing

condemns us to being, as Senator Clinton suggested, in the same

place 5 years from now or 10 or 20 years from now.

The last time we really thought systemically about what it would

take to address the mental health needs of the American people as

a whole was in the early 1960’s, and we came up with what was

not a bad plan. We divided the country by State, and each area of

each State was assigned a catchment area. There was a community
34

mental health center designed to be responsible within that

catchment area for the mental health needs of every person who

lived there.

So the question of where you went when you had a mental

health problem was a nonquestion. You went to the mental health

center, and it had the responsibility of integrating you into the system of care.

Moreover, when you transitioned from being a child to being an

adult, there was a place—it was the mental health center—that

had responsibility for making sure that you bridged that gap. They

were responsible for you when you were 17, and they were responsible for you when you were 19.

It was a terrific concept. In part, the problems that it had were

problems derived from inadequate funding in the first place. The

notion was that the Federal Government would provide funds to

build these centers and then would taper its support over a number

of years, and that the States or someone would pick up the difference. Well, the Federal support indeed was tapered and ultimately transitioned to the block grant system in roughly 1980, but

the State tapered their support simultaneously, and nobody picked

up the difference.

So we have a vestige in some areas of the country of this community mental health system, but the reality is it is only a shell of

what it once was.

Maybe a revitalization of that system is what we need now.

Maybe there is some other equally comprehensive and integrated

approach. But it is that kind of thinking that I was suggesting we

need to engage in.

Senator DEWINE. So, Doctor, if you took a snapshot of where we

were 10 years ago, 20 years ago, are you saying that we have actually regressed?

Dr. APPELBAUM. I am saying that we have actually regressed.

Senator DEWINE. I am seeing a nodding of ‘‘yes’’ from Dr. Brandenburg, Mr. Faenza, and of course, Dr. Appelbaum. Would that be

correct? OK.

Dr. APPELBAUM. I was speaking last week, Senator, to a team

from Summit County in Ohio that had just won a national award

for an innovative mental health program. I visited Summit County

2 years ago and frankly, I thought that in my travels around the

country, it was one of the finest integrated community mental

health center-based programs I had seen—the kind of model that

we could expand around the country. But when I talked to the director of mental health services and the medical director last week

and told them how impressed I had been 2 years ago on my visit,

they said, ‘‘Well, you might feel differently if you came back today,’’ that even this model program is facing extreme economic stress,

and they are watching important pieces of it no longer be able to

be supported.

So the answer to your question is clearly ‘‘yes.’’ Senator DEWINE. That testimony is very troubling, and this

hearing has been very troubling—but very instructive and, we

hope, very helpful.

Are there any additional comments from any of the witnesses?

[No response.]
35

Senator DEWINE. We thank you all very much.

The hearing is adjourned.

[Additional material follows.]
36

ADDITIONAL MATERIAL

PREPARED STATEMENT OF STEPHEN W. MAYBERG

Good morning Mr. Chairman and Members of the Subcommittee. I am Dr. Stephen W. Mayberg, Director of the California Department of Mental Health. I was

privileged and honored to have been named by President Bush to serve as a member

of his 15-member New Freedom Commission on Mental Health, under the chairmanship of Ohio Mental Health Commissioner Mike Hogan.

My position as the Director of the California Department of Mental Health, the

largest State mental health system with a public sector budget at almost $3.4 billion

and 8,500 employees, gives me a broad perspective of the issues and problems facing

our public mental health system. Even more important, I suspect that a factor in

my selection to the Commission was my long time advocacy for an accountable, state

of science and user-friendly mental health system that is responsive to the people

we serve. I have frequently spoken of a system that produces outcomes and is about

services, not bureaucracies.

The public members of the Commission included not only representatives of State

Government such as I, but also representatives from the judicial branch, from mental health services providers, and from the ranks of mental health advocates. We

were joined by seven ex officio Federal members representing not only agencies and

offices of HHS, but also the Departments of Education, Labor, HUD, and Veterans

Affairs.

One of those ex officio members, SAMSHA Administrator Charles Curie, is testifying here with me today. He and his agency have been charged by the Administration to assess the work of the Commission and to lead the transformation of mental

health care that its recommendations help guide. With his expertise that spans Federal, State and local mental health—and his highly effective leadership style—evidenced in his remarkable work in Pennsylvania State Government to change how

mental health services are done there—I feel confident that we can accomplish the

transformation of today’s mental health care system And, with your help, we can

do it in ways that benefit the people the system was intended to serve first and foremost—men and women, teens and children and their families living today with

mental illnesses.

Quoting the Executive Order that created the Commission, the charge to the Commission was ‘‘to recommend improvements [in the U.S. mental health system] to enable adults with serious mental illnesses and children with severe emotional disturbances to live, work, learn, and participate fully in their communities.’’ To do so

we were asked to conduct a comprehensive examination of the U.S. mental health

system today.

The challenge was to accomplish that mission within a year. And so we have. In

July, the result of our work was submitted to the President, and to the Nation.

Why The Commission Was Created

In any given year, about 5–7 percent of adults have a serious mental illness. In

2002, for example, SAMHSA’s National Survey on Drug Use and Health reports

that an estimated 17.5 million adults age 18 or older, 8.3 percent of all adults, had

serious mental illnesses (SMI). A similar percentage of children and youth, from 5–

9 percent, have a serious emotional disturbance in any one year. I’m referring to

illnesses that not only meet the diagnostic criteria for mental illnesses found in the

Diagnostic and Statistical Manual of Psychiatry, Fourth Edition (the DSM–IV), but

illnesses that also substantially hinder one or more life’s activities like holding a

job, getting dressed, learning at school, or participating in community activities.

These are illnesses that rank first among the leading causes of disability in the

United States, Canada and Western Europe. They also are the leading cause of suicide, causing more deaths each year worldwide than homicide and war together.

Mental illnesses cost the Nation an estimated $79 billion annually. And the vast

majority of that total ($63 billion) reflects loss of productivity as a result of these

illnesses and another $12 billion in mortality costs resulting from premature death.

In human terms, the losses are nearly incalculable, spanning lost families and

homes, lost education, lost livelihood, and most of all—lost opportunities.

Yet, despite the prevalence, the costs, and the clear public health imperative, people with these disorders often are untreated or under-treated. Mental illnesses often

have been under reported. Compounding the problem, countless individuals in need

of services cannot or do not receive them. Again, according to the SAMHSA Household Survey, in 2002, among adults with serious mental illnesses, 30.5 percent perceived they had an unmet need for treatment in the past 12 months.
37

Too many Americans including policymakers and administrators, program officials

and health care providers, for too long did not recognize the full public health implications of these devastating disorders. And for too long, any efforts to address mental illnesses in America have been piecemeal, patchwork affairs.

President Bush created the Commission because, first and foremost, as he stated, ‘‘Americans with mental illness deserve our respect . . . and they deserve excellent

care.’’ He recognized that millions of Americans of all ages, both male and female,

and of all races and ethnicities experience mental illnesses.

President Bush created the Commission because he recognized that mental illnesses, like other chronic illnesses, can be treated successfully and that people with

mental illnesses can and do recover.

Perhaps most critically, he recognized, as do an ever-growing number of those of

us working in the field, that three key obstacles keep people with mental illnesses

from getting the services they want and need:

1. The stigma that still surrounds these illnesses;

2. The fragmented mental health care service system; and

3. Existing treatment and dollar limits for mental health care in private health

insurance.

The Commission the President established was asked to address the second

issue—the fragmented mental health care service delivery system, to identify ways

to respond and models that work to respond, and to make solid recommendations

for all levels of government and public and private sectors to take action.

The Report’s Findings

To do so, the Commission developed a format to receive public comment, hear expert testimony, and to conduct field visits. We assessed existing reports and documentation addressing a wide range of issues and reached out to experts in science,

policy, program development, and those experiencing mental illnesses themselves.

Our open meetings generated voluminous content as well as input from the

1,000,000 hits on our website.

The scope of information and issues was, at times, staggering and to provide focus

we identified 16 areas of concern. Subcommittees of the Commission looked at, for

example, diverse issues such as interfaces between physical health and mental

health, criminal justice issues, children’s and older adult issues, issues of culture,

and co-occurring disorders, as well as numerous other topics.

The work was prodigious; the information gathered extensive. An interim Report

issued at the 6-month point in our work helped inform the field about where our

deliberations were headed and generated still further comment and discussion. That

interim report clearly stated the ‘‘system is in a shambles’’, care is fragmented for

adults and children, older adults do not receive adequate care, and we have unacceptably high levels of unemployment and disability for persons with serious mental

illness.

With tremendous diligence, dedication and work, the Commission crafted the

Final Report of the President’s New Freedom Commission on Mental Health. Titled

Achieving the Promise: Transforming Mental Health Care in America, the report

presents the Commission’s vision for a transformed mental health system for America and provides a roadmap for that transformation. The destination is recovery—

the essentials for living, working, learning, and participating fully in the community—what SAMHSA Administrator Curie likes to call ‘‘a life in the community for

everyone.’’

It’s a vision that we must realize. During our work, we disclosed that today’s mental health system unintentionally is focused on managing the disabilities associated

with mental illnesses rather than fostering recovery. That limited approach is a

product of fragmentation, gaps in care and uneven quality of care when it occurs.

These system problems frustrate the work of dedicated staff and make it much

harder for people with mental illnesses and their families to access needed care.

We would reweave today’s patchwork system into whole cloth—strengthened by

a focus on resilience and recovery. The approach we have recommended will move

children, youth, adults and older Americans with mental illnesses toward full community participation, instead of school failure, institutionalization, long-term disability and homelessness.

The roadmap we have charted focuses on six goals and a series of specific recommendations for Federal agencies, States, communities, and providers nationwide.

Together, working through both the public and private sectors, the recommendations leverage resources to their utmost to achieve the needed transformation of

mental health care.

The data I have already shared with you underscore the importance and urgency

of meeting the goals and implementing the recommendations the Commission has
38

proposed. As I’ve already observed, these goals and recommendations are drawn not

from the Commission members alone, but from the experiences of clinicians and administrators, consumers and families, policymakers and community-based services

programs.

The Goals and Recommendations

Let me discuss some of the key goals and the recommendations we have made

to reach them.

First, we found that if we are to transform mental health care, our programs—

from the Federal level to the community level—must shift toward consumer and

family-driven services. Consumers’ needs and preferences, not bureaucratic requirements, must drive the services they receive. To achieve that goal, the commission

recommended specific changes in Federal programs and upgraded State responsibility for planning effective services. Most critically, we stressed the importance of

placing consumers and their families at the center of service decisions.

Second, we observed that members of minority groups and people in rural areas

today have worse access to care. Further, they often receive services that are not

responsive to their needs. As a result, the burden of mental illness is heavier for

these individuals. The Commission urged a commitment, again, from community up

to the Federal level, to services that are ‘‘culturally competent’’—acceptable to and

effective for people of varied backgrounds.

The Commission’s review further found that, too often, mental illness is detected

late, not early. As a result, services frequently focus on helping people live with considerable disability, rather than on intervening early, which nearly always yields

better outcomes—less disability, and a better opportunity for a meaningful life in

the community. Thus, we recommended a dynamic shift in care, toward a model

that emphasizes early intervention and disability prevention. As our report stated,

‘‘early detection, assessment, and linkage with treatment and supports can prevent

mental health problems from compounding and poor life outcomes from accumulating . . .’’

Achieving this goal requires better and more extensive engagement and education

of first-line health care providers—primary care practitioners. It also demands a

greater focus on mental health care in institutions such as schools, child welfare

programs, and the criminal and juvenile justice systems. The goal is a system of

integrated, community-based care that can screen, identify, and respond to problems

early. The Commission also noted that a majority of adults—even those with the

most serious mental illness—want to work, but are held back by poor access to effective job supports, incentives to remain on disability status, and employment discrimination. That, too, can be changed with thoughtfully designed community-based

programs, incentives to employers. Most critically, it can be changed by instilling

in community leaders, employers and educators the knowledge that people with

mental illnesses can and do recover and that they can be good students, workers,

and members of their families and communities.

Acknowledging significant progress in research on mental illnesses, the panel

urged the elimination of the 15–20 year lag between the discovery of effective treatments and their wide use in routine patient care. We underscored the need for accelerated and relevant research to promote recovery and, ultimately, to cure and prevent mental illnesses We also found that while we have gleaned considerable new

insights into what services and supports are most effective in helping people achieve

recovery and resilience, these practices find their way into community-based care

far too slowly. Thus, we called for a more effective process to make ‘‘evidence-based

practices’’ the bedrock of service delivery. This will require that payers of mental

health care reimburse such practices, that universities and professional groups support training and continuing education in research-validated interventions.

Finally, we recommended that the mental health system needs to move more effectively to harness the power of communications and computer technology to improve access to information and to care, and to improve quality and accountability.

With strong protections for privacy, these technologies can improve care in rural

areas, help prevent medical errors, improve quality and reduce paperwork.

Throughout the report, the Commission identified private and public sector model

programs as exemplars of how aspects of mental health care have been transformed

in selected communities.

These examples of innovation—across America, across the age span, and addressing many needs—illuminate how dramatic change is possible, and serve as beacons

for the broader improvements recommended by the Commission.
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In Closing

With the transmission of our Report, the work of the Commission ended. Your

work, the work of lawmakers, policymakers, program developers, administrators

and citizens is just beginning. The challenge before you is to move today from the

principles we have espoused to policy that will guide the transformation of mental

health care today. It’s a challenge to move from paper to practice in the community.

Change is not easy; but the Commission has provided models and pointed the way.

It’s a challenge that will take thought, resources and resolve. But most critically,

it’s a challenge that must be accepted not only here at the Federal level, but also

in States and communities as well as families and individuals.

I hope your role as Federal legislators, is to lead by example—to lead in breaking

through the stigma of mental illnesses, to lead in breaking down the silos that keep

policy and programs for working toward shared solutions, and to lead in the knowledge that, with a system that works for them, people with mental illnesses can and

will recover to lead healthy, contributing lives in their communities as parents and

partners, workers and students, taxpayers and concerned citizens of their Nation.

I am convinced that, together, we can undertake and realize the wholesale transformation of mental health care in America that will be measured not in the bureaucratic terms of dollars and cents, but rather in outcomes that improve the quality of the lives of people with mental illnesses, lives that can and should be lived

with dignity, productivity and the pursuit of happiness that the founding Fathers

envisioned for us all.

Thank you, Mr. Chairman and Members of the Subcommittee, for the opportunity

to be here and to explore with you what the Commission has found and recommended.

PREPARED STATEMENT OF CHARLES G. CURIE

Mr. Chairman and Members of the Subcommittee, I am honored to present on the

President’s New Freedom Commission on Mental Health and the Administration’s activities to achieve the goals contained in the Commission’s final report. First, I

want to thank my friend and colleague Steve Mayberg for his kind words and his

contributions to the Commission’s work. I also want to recognize the leadership

demonstrated by Michael Hogan as the Chair of the President’s Commission. Mike’s

is steadfast commitment to do what is right for people with mental illness steered

the commission through many tough decisions and ultimately led to the final report

which we are here today to discuss.

An important context for our work in the Bush Administration and the recommendations developed by the commission is the words of people in our service

delivery systems working to obtain and sustain recovery. In particular, the first position I held, as a new MSW graduate, was working as a therapist to help mental

health service consumers make the transition from in-patient care in State hospitals

back into the community.

This aftercare group included consumers that had spent over a decade in the hospital. I asked them what they needed to make their transition successful. They

didn’t say they needed a psychiatrist. They didn’t say they needed a psychologist.

They didn’t even say they needed a social worker. They didn’t say they needed a

comprehensive service delivery system or evidenced-based practices. They said they

need a job, a home and meaningful personal relationships or to use a direct

quote...’’I need a life—a real life . . . I need a job, a home and a date on the

weekends.’’

People seeking or in recovery from mental illness need most to feel connected.

They want a life, a real life with all of its rewards. This is the very essence of the

recommendations contained in the final report of the President’s New Freedom

Commission on Mental Health.

It is a privilege to serve President Bush and work for Tommy Thompson, our Secretary of the U.S. Department of Health and Human Services. This is an Administration that knows treatment works and recovery is real!

In the words of our President, ‘‘Political leaders, health care professionals, and all

Americans must understand and send this message: mental disability is not a scandal—it is an illness. And like physical illness, it is treatable, especially when the

treatment comes early.’’ As you have heard the President charged the Commission

to study the problems and gaps in our current system of treatment, and to make

concrete recommendations for immediate improvements that will be

implemented . . . by the federal government, the state government, local agencies,

as well as public and private health care providers.

I will not spend a lot of time on the details of the report because you have already

heard from Steve Mayberg. Instead, I will share a little of the ‘‘why’’ and the ‘‘what
40

now’’ perspectives with you. Currently, numerous Federal, State and local government entities oversee mental health programs. In fact, the Commission identified

over 40 Federal programs alone.

One of the largest Federal programs that supports people with mental illnesses

is not even a health services program. The Social Security Administration’s (SSA)

Supplemental Security Income (SSI) and Social Security Disability Income (SSDI)

programs paid approximately $27 billion in disability payments in 2002 to beneficiaries with mental impairments (excluding mental retardation). Persons with

mental illness represent the fast growing group of persons determined to be disabled

by SSA.

At the same time employment is an essential tool for persons with mental illnesses to fully participate in their communities. The majority of adults with serious

mental illness want to work and many can work with help. However, many seek

disability status to get health coverage and to do so, the must either end or limit

their employment. As a result, many consumers with serious mental illness continue

to rely on Federal assistance payments in order to have health care coverage, even

when they have a strong desire to be employed.

Few mental health planning or Medicaid planning requirements ensure States

work across State agencies or with mental health constituencies to form a single

comprehensive mental health plan for the State. Consequently, the goals and desired outcomes, the service definitions and provider qualifications, and the payment

mechanisms and organization of mental health care can be very different, depending

on whether Medicaid, general fund appropriations, or other sources, such as schools,

Temporary Assistance for Needy Families, local public mental health authorities, or

juvenile justice systems are the payers of services.

Clearly, more efficient organization and better coordination of services and funding streams will assist providers in making sure effective treatment is received and

that recovery can be realized. And, Federal funding sources should be aligned and

provide consistent direction to States in their planning efforts, taking into account

the multiple missions of the various funding streams and programs.

When the President announced the Commission and defined the scope of responsibility, he spoke frankly about the poor quality of mental health care in this country in terms of its fragmented delivery system. He talked about the many points

of contact we have with people with mental illnesses—all too often this being homeless shelters, criminal justice system or welfare system. He talked about missed opportunities to diagnosis and treat individuals suffering from mental disorders. And,

he also acknowledged the difficulty of achieving a diagnosis and providing the state

of the art care we know can be delivered.

He spoke of the many Americans who fall through the cracks of our current service delivery system and equated that failure with years of lost living and of lives

entirely lost before help is given—if it is ever, in fact, even offered.

President Bush drew upon the all too often common example of a 14-year old boy

who suffered from severe depression and began experimenting with drugs to selfmedicate and alleviate his symptoms. You are all well too familiar with the shameful scenario of the honor student turned drug addict. This young man, like many

Americans of all ages, slipped through the cracks. And just like him, he wasn’t diagnosed until age 30 with a bipolar disorder, they wait half their lifetime for someone

to notice that their behavior wasn’t simply a matter of poor choices.

As you may know, SAMHSA has been given the lead role to conduct a thorough

review and assessment of the final report of the President’s New Freedom Commission on Mental Health with the goal of implementing appropriate steps to strengthen our mental health system. In short, President Bush asked the Commission to

give the mental health system a physical... they did. The diagnosis is ‘‘fragmentation and disarray.’’ The Commission report found the nation’s mental health

care system to be well beyond simple repair. It recommends a wholesale transformation that involves consumers and providers, policymakers at all levels of government, and both the public and private sectors.

The ‘‘Mental Health System Recovery Plan’’ if you will, will require the implementation of the ‘‘To Do List’’ currently being developed by SAMHSA on behalf of the

Bush Administration. The ‘‘To Do List’’ will form an action agenda to achieve transformation of mental health care in America. My lead staff person for developing this

action agenda is Kathryn Power. Kathryn recently joined SAMHSA as the Director

of our Center for Mental Health Services. She is working to develop an agenda for

transformation that is built around the 6 goals and 19 recommendations contained

in the Commission’s Report.

This transformation will require a shift in the beliefs of most Americans and will

require the nation to expand its paradigm of public and personal health care. Everyone from public policymakers to consumers and family members must come to un-
41

derstand that mental health is a vital an integral part of overall health. Along with

this new way of thinking, Americans must learn to address mental health disorders

with the same urgency as other medical problems.

The report also challenges us to close the 15-20 year lag time it takes for new

research findings to become part of day-to-day services for people with mental illnesses. Waiting for the research to make its journey down an already clogged pipeline equates to generations lost in the process. Too many Americans are already

under-served and many more are done a disservice when their quality of life remains poor while they wait for the latest research to crawl into their communities.

The report challenges us to harness the power of health information technology

to improve the quality of care for people with mental illnesses, to improve access

to services, and to promote sound decision-making by consumers, families, providers,

administrators and policymakers. And it challenge us to identify better ways to

work together at the federal, state and local levels to leverage our human and economic resources and put them to their best use for children and adults living with—

or at risk for—mental illnesses. Most of all, the report reminds us that mental illness is a treatable illness and that recovery is the expectation. As a compassionate

nation, we cannot afford to lose the opportunity to offer hope to those people fighting for their lives to obtain and sustain recovery.

To lead the effort I have assembled a transformation taskforce. We are already

working with relevant Federal agencies—to determine ways—to provide States the

flexibility needed and the incentive—to bring to bear the full force of the resources

available to meet the needs of people with mental illnesses. I am counting on the

relationship that SAMHSA and other Federal Agencies have with our State partners. As we move forward, we will work with States to develop an Action Agenda

of their own. A few states have already begun—Texas, Nevada, Nebraska—to name

a few.

The new state agendas must be consumer and family driven—not bureaucratically

bogged-down. Consumers of mental health services and their family members must

stand at the center of the system of care. Consumer and family needs must drive

the care and services that are provided. The result will be more of our family members, co-workers, neighbors and friends living that rewarding life in their communities that I talked about in the beginning of my remarks.

In closing, we all need to recognize the changes that need to be made will not

happen over night. Developing and implementing the Action Agenda for Transformation will be an ongoing process. Clearly, our success will depend on our ability

to span all levels of government and the private sector to align and bring to bear

the full force of resources available. The strategy will be to keep our focus on the

needs of adults with serious mental illnesses, children with serious emotional disturbances and their family members. The goal is to make recovery a reality for everyone.

Thank you for your time and interest is our work. I would be pleased to answer

any questions you may have at this time.

PREPARED STATEMENT OF PAUL S. APPELBAUM, M.D.

Mr. Chairman and members of the Committee, I am Paul Appelbaum, MD, Professor and Chair of the Department of Psychiatry at the University of Massachusetts Medical School, where I oversee the largest mental health treatment system

in Central Massachusetts. As the immediate past president of the American Psychiatric Association, I have been deeply involved in efforts to reform the system of

care for mental disorders, and have followed the work of the Commission closely.

When the Commission declared in its Interim Report that ‘‘the mental health delivery system is fragmented and in disarray . . .,’’ it struck a chord with mental

health professionals, persons with mental disorders and their family members,

across the country. After three decades of neglect and progressive defunding, the

mental health system finds itself mired in crisis. Let me tell you about the troubling

situation in my home state of Massachusetts.

Imagine that you live in Massachusetts and have become so depressed that you

cannot work or care for those who rely on you, or so stricken with anxiety that you

can no longer leave your house. But you are fortunate enough to have health insurance and expect not to have trouble finding the treatment you need. When you call

a general hospital with a large outpatient clinic like mine, however, they explain

that they will need to put you on a waiting list of weeks to months in duration.

With insurers paying less than the actual cost of delivering outpatient treatment,

hospitals have been reducing the size of their clinics or closing parts of them altogether, to the point where the need for services vastly exceeds the supply.
42

Perhaps next you try calling a list of private practitioners in the community who,

your insurance company says, are part of their ‘‘network.’’ But many of them tell

you frankly that they no longer accept insurance coverage, because the rates are too

low to allow them to survive. They can see you only if you pay out of pocket for

the costs of your care. Other clinicians, of course, do still accept some patients with

insurance, but they too have waiting lists. If you leave your name, they will call

you back when—and if—an opening appears.

With time passing and no treatment, your condition worsens. One morning, you

cannot even get out of bed. A worried family member brings you to the nearest psychiatric emergency room, itself overwhelmed with people like you who have been unable to access timely outpatient care. Although it’s clear by now that you need to

be hospitalized, you wait 7 hours—about average you learn—for an empty bed to

be found in a hospital 50 miles away. In the emergency room, you are one of the

lucky ones. Other patients, several of them adolescents, have been living there for

several days while waiting for a bed. It turns out that psychiatric units are notorious money—losers in general hospitals, with insurers paying somewhere around

70% of the real costs, and that units have been closing around the state for the last

decade.

Your neighbor, with bipolar disorder, who works in a minimum wage job without

insurance, is in an even tougher spot. Community mental health centers are no

longer funded by the state to care for uninsured patients and are now simply turning them away. Since Massachusetts hospitals have to accept uninsured patients at

the hospital’s expense as a condition of participating in the Medicaid program, when

she deteriorates to the point of needing to be hospitalized, a bed can be found. But

as it becomes clear that she’ll need longer-term care in one of the few remaining

state hospitals, she waits for more than a month before the transfer can take place.

And once she’s discharged into the community, the continuum of services that she

needs—housing, job training, treatment for substance abuse—is stretched so thin

that there is no guarantee that she can access any of them.

If this were the situation only in Massachusetts, it would be a tragedy, but might

not warrant the attention of this Committee and all of Congress. But these scenarios are echoed in state after state. Given this, it is no surprise that the US Surgeon General’s Report on Mental Health cited data showing that only 20% of persons with mental disorders receive any treatment in a given year, and that includes

fewer than half the persons with such severe disorders as schizophrenia and bipolar

disorder. Hence, the importance of Commissioner Hogan’s call in the transmittal letter for the Commission’s report, for a ‘‘fundamental transformation’’ of our approach

to mental health care.

The recommendations in the Commission’s report are, without exception, helpful.

But to be frank, they fall short of the fundamental transformation that is so clearly

needed. As president of the American Psychiatric Association, I appointed a task

force to develop a vision of what a genuine system of mental health care should be.

That report, along with my presidential address that lays out some directions we

can follow, has been provided to the Committee. In short, I suggest that we need

to facilitate the integration of treatment for most mental disorders into the primary

care medical system—a goal that faces numerous structural obstacles today. And for

our citizens with severe and persistent mental disorders, we must reinvigorate the

vision of President John F. Kennedy, whose Community Mental Health Act of 1963

marked the last attempt to construct a nationwide mental health system that could

care for all our of our citizens. And while the costs of such a program cannot be

ignored, it is likely that they can be funded in substantial part from money now

spent on jails, homeless shelters, disability payments and other efforts to compensate for the failings of our mental health system.

Thank you for your attention and I would be pleased to respond to the Committee’s questions.
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PREPARED STATEMENT OF THE CAMPAIGN FOR MENTAL HEALTH REFORM

Mr. Chairman and Members of the Subcommittee, I am Michael Faenza, President and CEO of the National Mental Health Association and I am pleased to offer

this testimony on behalf of the Campaign for Mental Health Reform.

The Campaign for Mental Health Reform has been organized to advance Federal

policies to make access, recovery, coherence, and quality in mental health services

the hallmarks of our nation’s mental health system. The organizations making up

the Campaign represent mental health consumers, families, advocates, professionals, providers, States, counties, and communities and are dedicated to improving

the lives of people with mental illnesses and children with mental, emotional or behavioral disorders. We welcome the opportunity to provide testimony regarding the

recommendations of the New Freedom Commission on Mental Health. Sharing a

common commitment to advancing the Commission’s vision and goals, we are eager

to work with this committee to advance needed reforms.

The Commission report and its recommendations represent an important milestone to guide policymakers. Building on the 1999 Report of the Surgeon General

on Mental Health, the Commission’s work offers a compelling vision and recommendations on how our nation must address mental health that finds broad support in the mental health community. We view the Commission’s report as a call

to action, and applaud the commissioners’ efforts to beam a national spotlight—albeit for a brief year—on a subject that is too often neglected: the needs of adults

and children with or at risk of mental illness.

We share a belief that there is a desperate need to transform mental health care

in the United States. Mental illness takes a devastating toll on millions of individuals and their families. It is the second leading cause of disability and premature

death in our country. However, as a country, we have yet to make mental health

a real priority commensurate with its prevalence, morbidity and mortality. Mental

health and the state of our public mental health delivery system should be matters

of real societal concern. Consider, for example, that untreated mental illness im-
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poses a cost of some $79 billion on our economy. As the Commission reported, one

of every two people who need mental health treatment in our country do not receive

it. Mr. Chairman, as you know from your years of work on this issue, some 16 percent of those in our nation’s prisons and jails have a mental illness. And as many

as 80 percent of the young people in our juvenile justice system have a mental or

substance use disorder. Thirty-thousand Americans die by suicide each year, with

mental disorders a factor in 90 percent of those instances. The suicide rate exceeded

the homicide rate this past year as it has for the last 100 years. Like mental health

problems generally, suicide strikes across the age span. Suicide is the third leading

cause of death among those between 10 and 24. Older Americans have the highest

rate of suicide of any population in the United States, and the suicide rate of that

population increases with age, with those 65 and older accounting for 20 percent of

all suicide deaths, while comprising only 13 percent of the population. The rate of

suicide among Native Americans is about 1.7 times the rate of the nation as a

whole. Shocking as they are, these statistics alone mask the crushing pain that

mental health problems cause individuals, their families, and communities. They

also represent a stark reflection of our failure to make mental health a real priority.

The Commission ‘‘got it right,’’ in our view, when it said last year that our nation’s

failure to prioritize mental health is a national tragedy.’’

In fact, government has both underfunded mental health programs and failed to

address mental health as a cross-cutting issue. As the Commission ably documents

in highlighting the paralyzing fragmentation in mental health service-delivery, mental health is an issue of public health, health financing, child welfare, education,

housing, criminal justice, rehabilitation, and employment, to name only the most obvious.

In its report, the President’s Commission called for a transformation of mental

health care in America. The goal of transformation might seem a novel concept or

overblown rhetoric. But there is a compelling logic to this vision. Science has transformed both our understanding of mental illness, and the tools to diagnose and treat

most mental illnesses. The Commission’s recognition that we can build resilience

and that recovery from mental illness is a realizable goal reflects another transformation in thinking about mental illness. But public understanding and attitudes

about mental illness are still shaped by old stereotypes and stigma. And, with rare

exception, State and local governments have not been able to bring together the

needed tools to enable people with mental illnesses to live and participate fully in

their communities. Although the Commission has provided a compelling vision of

the elements of a transformed mental health system, it has not laid out a roadmap

for how the transformation it prescribes might be realized.

The Commission left it to policymakers to answer the question, how do we proceed

down a road toward real transformation? Administration officials have described a

process aimed at developing administrative measures that would advance the Commission’s goals. Mental health advocates have been invited to offer recommendations. We welcome that invitation and have initiated efforts to meet with pertinent

agency officials.

We appreciate that there are opportunities for mental health reform at all levels

of government and we recognize the importance of leadership from the Federal Government in advancing change. But it is difficult to conceive that administrative action alone can transform a system described as ‘‘in shambles.’’ Administrative measures cannot align the inconsistent eligibility requirements of the disparate Federal

programs so critical to meeting the array of benefits, services and supports needed

by many people with mental illness. Administrative measures will not address the

anomaly that by law, Medicaid, the largest payer of mental health services in the

country, treats mental health care as an optional service. And administrative measures will not alter the fact that Medicare mental health benefits fail to provide basic

parity between mental health care and care for any other illness and fail to cover

important, effective services needed to treat chronic illness.

Congress must be a leader in changing a ‘‘system’’ that, in the Commission’s

words, ‘‘does not adequately serve millions of people who need care.’’ The problems

pinpointed by the Commission span a range of challenges—including scattered and

sometimes ineffective programs, uncoordinated funding streams, and unmet need—

but this committee can play a vital role in crafting needed solutions. Importantly,

this committee’s leadership in reauthorizing and giving new policy direction to the

Substance Abuse and Mental Health Services Administration can establish a framework for powerful change.

We hope to work with this committee and provide concrete recommendations for

legislation that will advance the Commission’s goals and strengthen SAMHSA’s

hand in helping achieve them.
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Among the important issues we urge this committee to take up, and on which we

are developing legislative proposals, are the following:

• Fostering new financing and planning mechanisms to provide effective, familydriven community-based care to children and youth with mental health needs;

• Fostering mental health promotion and early intervention services through

school-based mental health care;

• Advancing early detection and treatment across the age span for mental health

problems, including co-occurring mental illnesses and substance use disorders;

• Reducing fragmentation in mental health service delivery, including support

and systems of care for children and their families;

• Developing mechanisms to expand, implement, and monitor the progress of the

national strategy for suicide prevention;

• Fostering greater integration of health and mental health care;

• Fully involving mental health consumers and families in orienting the mental

health care system toward a recovery orientation;

• Developing targeted programs to expand and improve the effectiveness of the

mental health workforce, including the training of racial and ethnic minority mental

health professionals to meet the needs of increasingly diverse populations; and

• Fostering diversion of juveniles and adults from justice systems to improved

community-based mental health care systems.

As this committee moves toward reauthorization efforts, we also look forward to

working with you, and with the agency, on a significant revision in the role of the

Substance Abuse and Mental Health Services Administration (SAMHSA) within the

Federal government. With appropriate revision of its statutory ‘‘charter’’, SAMHGA

can become an even more effective focal point for leadership on many of these and

other important mental health issues, as well as provide leadership to States and

communities.

As the President stated in announcing the establishment of a mental health commission, ‘‘our country must make a commitment.’’ That commitment will necessarily

require dramatic reforms across a range of government programs—among them,

Medicaid, Medicare, housing, Social Security income support, vocational rehabilitation, education, child welfare, and justice. In some instances, we believe Federal programs give insufficient attention to the needs of people with or at risk of mental

illness; most, however, provide important assistance, but with their differing objectives, eligibility requirements, and financing structures, contribute to the widespread fragmentation in mental health service-delivery that is too often both inefficient and ineffective. We applaud this subcommittee for giving the Commission’s

recommendations early consideration. But we also hope, Mr. Chairman, that as you

review the challenges facing children and adults with or at risk of mental illness

that you will consider urging other committee chairmen to make mental health reform a priority that moves us toward cross-system coordination and integration, and

ultimately the kind of transformation the Commission envisioned.

Finally, Mr. Chairman, it is critical that we embark on this path with an appreciation that mental health has long been dramatically underfunded relative to the

impact mental disorders have on the individual, his or her family, the community,

and the economy. In short, we urge Congress to make mental health and the transformation to a recovery-based system both a legislative and a funding priority.

PREPARED STATEMENT OF CARLOS BRANDENBURG

Mr. Chairman and Members of the Subcommittee: My name is Carlos Brandenburg, and I am the Administrator of the Division of Mental Health and Developmental Services in Nevada’s Department of Human Resources. I would like to extend my thanks and appreciation to Chairman DeWine and the Subcommittee for

inviting me to testify this morning regarding the State of Nevada’s experience and

efforts pertaining to the final report of the President’s New Freedom Commission

on Mental Health.

By describing the poor state of the nation’s public mental health system, the

President’s New Freedom Commission on Mental Health provided an invaluable

service not only for the millions of people in this country with mental illness and

their family members, but also for those of us responsible for administering the programs that are in crisis. Indeed, the mental health system in Nevada, notwithstanding our successes, faces extraordinary difficulties. At the same time, there has never

been a more hopeful time to take on this challenge, and I am profoundly grateful

for the opportunity to serve as my State’s lead on this issue and at this particular

point in time.

Why am I so hopeful?
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Much has already been said about the significance of the goals stated by the

President’s Commission itself, its recommendation that mental health be transformed, and its commitment to recovery. The value of the Commission’s work cannot

be overstated, but let me identify other critical factors.

First, we have in the Federal government a true partner. Administrator Curie

worked hard within the Administration to help the President form the Commission,

to ensure that it was composed of extraordinary people, and to establish for it an

ambitious but achievable mission.

Second, as you are hearing today, the advocates who stand up for the mental

health community in Washington, D.C., are organized and prepared to work together like never before. The Campaign for Mental Health Reform—today being represented by Mike Faenza of the National Mental Health Association—can help policy-makers make the Commission’s vision a reality and see to it that the light shone

on this issue is not dimmed.

Third, we are witnessing unprecedented interest on the part of Congress, as evidenced by this hearing and the creation of this Subcommittee.

And, fourth, is the good fortune of the State of Nevada itself. Nevada was honored

that President Bush appointed Nevada State Senator Randolph J. Townsend to

serve on the President’s Mental Health Commission. The Commission’s only elected

official, Senator Townsend has long been a proponent of mental health care. His recent work with the Commission has served as a great catalyst for Nevada’s current

efforts to transform mental health in our state.

In order to assist Senator Townsend in carrying out his duties and responsibilities

as a commissioner, we held numerous town hall and focus group meetings to explore

the range of problems and gaps in mental health care for Nevadans. This enabled

him to bring to the Commission concrete recommendations for improvement that

could apply both locally and nationally. Further, these meetings and focus groups

allowed us to quantify the degree of unmet need in Nevada and identify the barriers

that impede care for people with mental illness and prepare us for our work

ahead—after the work of the Commission was done.

During the 2003 state legislative session, Senator Townsend had the foresight to

introduce Nevada State Senate Bill 301, a copy of which I am submitting along with

my testimony. This state law created the Nevada Mental Health Plan Implementation Commission. The commission is charged explicitly with developing an action

plan for implementing the recommendations and goals of the final report of the

President’s New Freedom Commission on Mental Health in Nevada.

The Nevada Commission must submit a report setting forth the action plan to Nevada’s Interim Finance Committee, its Legislative Committee on Health Care, and

to Governor Guinn on or before January 1, 2005.

The Nevada Commission members elected Senator Townsend to serve as its

Chair. Other members include six state legislators, four state agency heads (including myself). The Commission also provides for extensive public involvement, including participation by consumers, family members, and providers. Our fourth meeting

is being held as we speak. Needless to say, my colleagues gave me leave to speak

with you all today. Each meeting is focused on one of the six goals of the final report

of the presidential commission. Today’s meeting is focused on ensuring early assessment and treatment of mental disorders, improving school-based mental health programs, and the need to provide integrated treatment for those with co-occurring

mental health and substance abuse disorders. In all our deliberations, we focus on

specific recommendations, both policy and budgetary, that will turn the President’s

Commission’s national goals into concrete forward steps in Nevada.

The Nevada Commission, in addition to providing an organized mechanism to facilitate comprehensive state mental health planning and policy development, has

also been an effective means of keeping the subject of mental health in the media

across the state and helping to raise awareness and hopefully reduce stigma. During

the course of our meetings, we have been struck by the fact that too many Nevadans

do not know that mental illness can be treated and that recovery is possible. We

have learned about the large barriers encountered by individuals with mental illness who are chronically homeless. We have heard compelling testimony about the

need for consumer involvement in care and the success of various consumer model

programs around the country, and we have learned some strategies used by other

states and locales in improving the nearly nonexistent mental health care in rural

areas of the nation—of course, an issue of particular concern in Nevada.

The Nevada Commission’s efforts have been greatly enhanced by generous technical support provided by the National Association of State Mental Health Program

Directors (NASMHPD) in conjunction with a contract with the federal Substance

Abuse and Mental Health Services Administration (SAMHSA). NASMHPD is enabling us to bring national experts, including members of the President’s Commis-
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sion, to our meetings. They who are providing us with recommendations of best

practices and programs in other areas of the country that can be implemented in

Nevada. This assistance has been invaluable.

Ultimately our Commission will show Nevada how to change the fragmented nature of our mental health delivery system. There are some preliminary findings that

I can report here today. For example, enhanced education about mental illness

would greatly improve the general public perception of mental illness and also increase the understanding that mental illness impacts overall health and that mental

illness is treatable and recovery is possible. Nevada will also focus on implementing

a state strategy for suicide prevention.

But here is the last point I would like to leave with the Subcommittee. The ultimate goal of the President’s Commission and, in turn, the Nevada Commission, is

ambitious—attainable, but ambitious. Indeed, it is calling for system transformation. The report of the New Freedom Commission on Mental Health identifies

the fragmentation of services and financing as central barriers to the effective delivery of comprehensive mental health services and has called on all levels of government to correct this problem by ultimately establishing in each ‘‘an extensive and

coordinated State system of services and supports that work to foster consumer

independence and their ability to live, work, learn, and participate fully in their

communities.’’ (Recommendation 2.4). You have heard about Nevada’s commitment

in making this happen. But neither Nevada nor any other state can do this without

significant assistance on the part of the federal government.

Specifically, we require federal assistance to both engage in the type of planning

envisioned by the Commission and to implement those plans, enabling us to fill the

enormous gaps in care for people with mental illnesses. Even in Nevada, where we

have been uniquely fortunate to begin the transformation process, we will not be

able to do it without federal funding. We hope that the Subcommittee, presumably

as it begins its effort to reauthorize SAMHSA and its programs, will work closely

with the states and the Campaign for Mental Health Reform to devise a bold program that will provide the support needed to ensure that the vision of transformation is realized.

Thank you again for inviting me to speak today. I am happy to entertain any

questions at this time.

PREPARED STATEMENT OF ANN BUCHANAN

Chairman DeWine, Senator Kennedy and members of the Subcommittee, I am

Ann Buchanan of Cockeysville, Maryland. I am proud to be here this morning to

share with you the story of my son’s struggle with mental illness and offer some

perspectives on President Bush’s New Freedom Commission on Mental Health. At

the outset I would like to thank you for convening this important hearing and inviting the unique perspectives of individuals living with mental illness and their families.

Before commenting on the final report of the White House Commission on Mental

Health, I would like to first tell you and members of this Subcommittee a little

about myself and my family’s experience with mental illness—a saga that continues

to this very day. My son is Rusty is now 22 years-old. When Rusty was age 16, he

and I suffered catastrophic event when his father, my husband, lost his battle with

cancer. Shortly thereafter, Rusty was diagnosed with depression—probably not uncommon for a teenage boy coping with the trauma of the loss of a father. In 1997,

Rusty was hospitalized twice at Shepperd-Pratt. During this period, Rusty was

growing increasingly agitated and angry and he physically attacked me twice. Shortly thereafter, he was forced to withdraw from Towson High School at age 17 and

was enrolled at Hannah Moore—a school for troubled adolescents.

After only three months at Hannah Moore, he was sent to the Regional Institute

for Children and Adolescents (RICA) in Baltimore. RICA is a treatment facility that

is part of the Maryland Department of Health and Mental Hygene. It includes both

residential programs and day treatment for adolescents with serious emotional disturbances and other mental illnesses. It offers a range of services including psychiatric treatment, crisis intervention, behavior modification, special education and

rehabilitative services.

After arriving at RICA, Rusty stayed for over a year, and with the help of the

staff and a supportive environment, graduated high school in 1999. While this

would normally be an occasion for celebration and accomplishment for most families,

it was a source of enormous stress for Rusty, myself and many of the staff at RICA.

Tragically for us the spring and summer of 1999 were filled with anxiety and uncertainty as Rusty approached his 18th birthday and high school graduation. The sad

reality is that as he approached what would normally be a period of great optimism
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and promise for most adolescents and their families, Rusty and I were dealing with

the fact that he was ‘‘aging out’’ of the child and adolescent mental health system

with very little planning and stability about the adult system of care he would be

entering.

While the staff at RICA were very caring and responsive, the sad reality is that

it was rare for them to deal with a young person such as Rusty who was receiving

a high school diploma. We all knew that a date certain was coming when Rusty

would no longer be eligible to receive services at RICA—again, because of he was

rapidly approaching the point at which he had ‘‘aged out’’ of Maryland’s child and

adolescent system. The stress this placed on Rusty was enormous and in the summer of 1999 he attempted suicide.

I want to reiterate that the staff at RICA were helpful. However, I was forced to

do most of the work to find a residential placement for Rusty. Waiting lists were

long and finding a residential placement was enormously difficult. All across Maryland, psychiatric hospitals and residential programs have been cutting beds and

shrinking programs. I made applications to 3-4 residential programs. Each had either a long waiting list or were unwilling to take him because of his history of abusive behavior—the result of his mental illness.

This period was filled with tremendous anxiety for Rusty and myself. RICA said

that he had to leave and I felt strongly that it was not safe for him to return to

my home. He was being denied placement in residential programs that could meet

his needs or was going to be placed on a waiting list that could take months if not

years. Eventually, he began receiving services from the adult system only after the

suicide attempt in July 1999 and an involuntary admission to Spring Grove Hospital. In other words, only after his symptoms and condition had deteriorated to the

point that he was a threat to himself (and most certainly others) was he able to

get the treatment he needed from the adult system.

While our story may be unique, I doubt it is. The sad reality is that thousands

of families every year face the enormous challenge of having their child ‘‘age out’’ of adolescent treatment and service programs. It should not come as no surprise to

anyone that the course of mental illness does not magically shift once a child turns

18, 19 or 20. The symptoms they experience—be it anxiety, depression, mania, psychosis or paranoia—do not change to fit our mental health system’s pre-existing

definitions about what are children and adolescent services v. what are adult services. In my view, it is disturbing that the separate child-adolescent and adult systems struggle so mightily to help adolescents make the transition in to adulthood.

This is especially the case with children and adolescents with more severe mental

illnesses who are much more likely to see their diagnosis and illness stay with them

into adulthood.

What must be done to ensure that meaningful transitional services become a reality? First, we need to recognize the shift in legal relationships that occurs when

the law deems an adolescent to be an adult with full legal rights in our society.

Rusty acquired specific rights once he became an adult. This included certain rights

relative to his mental illness treatment that did not exist when he was an adolescent. At the same time, the genesis of these legal rights should in no way obscure

the obligation of child-adolescent programs to be assertive in ensuring that young

people are fully able to access to mental illness treatment and services. More importantly, they should have an affirmative obligation to ensure that the adult system—

whether a public mental health authority or a CMHC—is aware of, and is prepared

to meet the treatment needs of adolescents reaching adult age.

The child-adolescent and adult mental health systems are necessarily separate—

on the basis of clinical and legal rationale. However, this separation should not extinguish the obligation for both to develop a cooperative and collaborative relationship that can foster a seamless transition.

One major challenge for us—and for providers such as RICA—is the shift in eligibility for income support and health care entitlements that can occur as adolescent

becomes a legal adult. In our case, Rusty qualified for certain Social Security survivor benefits from his late father. Many other adolescents with severe mental illnesses qualify for SSI before their 18th birthday. In either case, their access to certain programs may often be driven by what Medicare and Medicaid will pay for.

More importantly, for most families, this transition is rarely smooth and can involve months, and even years, of uncertainty as to which programs they qualify

for—this is especially the case with respect to state Medicaid ‘‘spend down’’ requirements. Moreover, in many states eligibility for Medicaid can be tied to participation

in a specific program. For example, Rusty’s eligibility for Medicaid currently depends on his continuing to be served in the residential program where he lives. If

he were to leave (or were forced out), he would almost certainly lose eligibility for

Medicaid and be left with no coverage for prescription medications and only limited
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coverage for outpatient therapy. Note—he would still be able eligible for Medicare;

however, Medicare does not cover prescription medications and has a 50% co-payment requirement for outpatient mental health services. Clearly more needs to be

done to address the fragmentation in both funding streams and eligibility standards

for these very complicated programs.

Our struggle with mental illness continues. Rusty has been diagnosed with schizophrenia. Since 1999, he has been in several different programs in Maryland, including Alliance in Essex. Currently, he resides at Keypoint in Dundalk, in a 3-bedrrom

apartment he shares with two other consumers. He slowly gaining more independence and has begun to ride the MTA on his own. He has also been participating

in a day treatment program. As part of this, he has begin working in the greenhouse

at Keypoint in hopes of acquiring skills that will allow him to participate in a work

program at the local Home Depot.

THE WHITE HOUSE MENTAL HEALTH COMMISSION REPORT

I would like to make a few brief observations about President Bush’s New Freedom Mental Health Commission Report as it relates to my own family’s experience

with mental illness. First, it is important to note this report does not contain any

specific findings or recommendations with respect to services designed to address

the transition from the child-adolescent system to the adult system. At the same

time, this report does document the enormous fragmentation that remains a serious

problem in our public mental health system.

The report also calls for development of an individualized plan of care for both

children and adults with mental illness (Recommendation 2.1). Specifically, the report recommends that such plans should be designed to improve service coordination, allow for informed choices and help achieve and sustain recovery. I have little

doubt that had such a plan been in place, Rusty would have been able to make a

more productive transition into adulthood.

On a more macro-level, Recommendation 2.2 calls for greater involvement of consumers and families in fully orienting the mental health system toward recovery.

This includes a plea for greater engagement of consumers and families in the planning and evaluation of services. This is certainly a laudable goal and would certainly help make providers (and more importantly) public officials more aware of the

struggles that adolescents and their families experience when children become

adults.

The report also contains a heavy focus on the need for more comprehensive state

planning (Recommendation 2.4). This is a very positive step toward making the

transition between the child-adolescent and adult system more seamless. As the report notes, such comprehensive state planning should allow for more creativity and

flexibility with respect to eligibility requirements for federal programs, insist on

more accountability at the state and local level (especially to consumers and families) and expand the array of available services. Among the requirements that could

be an integral part of this new era of comprehensive state planning is accountability

for ensuring that adolescents aging into the adult system (and their families) receive

assistance in making this often difficult transition. Such transition services should

include intensive case management and benefit planning.

Finally, I also want to comment on findings and recommendations in the report

calling for consumes and families to have a greater control over their own care.

While this goal is laudable, it will never be achieved without expansion of family

education and peer support programs to help consumers and families learn more

about mental illness, treatment system and how to advocate for themselves. I am

a graduate of the NAMI ‘‘Family-to-Family’’ Education program. I found it to be

enormously helpful in preparing me to cope with my son’s illness and become an

advocate both for his recovery and for improvements in the service system in our

community.

Likewise, numerous peer support and psycho-education programs for both consumers and families have a proven track record of effectiveness in promoting recovery real change at the community level. As you and your colleagues on this Subcommittee move forward in implementing this report, I would urge you to consider

the enormous value of programs such as ‘‘Family-to-Family’’ in moving toward the

goals articulated by the White House Commission.
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CONCLUSION

Chairman DeWine and members of the Subcommittee that you for the opportunity

to offer this testimony on behalf of myself and millions of families living everyday

with mental illness.

[Whereupon, at 11:48 a.m., the subcommittee was adjourned.]

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