[Senate Hearing 108-682]
[From the U.S. Government Publishing Office]
S. Hrg. 108-682
MENTAL HEALTH IN CHILDREN AND YOUTH: ISSUES THROUGHOUT THE
DEVELOPMENTAL PROCESS
=======================================================================
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
SECOND SESSION
ON
EXAMINING MENTAL HEALTH IN CHILDREN AND YOUTH, FOCUSING ON ISSUES
THROUGHOUT THE DEVELOPMENTAL PROCESS, AND S. 1704, TO AMEND THE PUBLIC
HEALTH SERVICE ACT TO ESTABLISH A STATE FAMILY SUPPORT GRANT PROGRAM TO
END THE PRACTICE OF PARENTS GIVING LEGAL CUSTODY OF THEIR SERIOUSLY
EMOTIONALLY DISTURBED CHILDREN TO STATE AGENCIES FOR THE PURPOSE OF
OBTAINING MENTAL HEALTH SERVICES FOR THOSE CHILDREN
__________
APRIL 28, 2004
__________
Printed for the use of the Committee on Health, Education, Labor, and
Pensions
U.S. GOVERNMENT PRINTING OFFICE
93-524 WASHINGTON : 2004
_________________________________________________________________
For sale by the Superintendent of Documents, U.S. Government Printing
Office Internet: bookstore.gpo.gov Phone: toll free (866)512-1800;
DC area (202) 512-1800 Fax: (202) 512-2250 Mail: Stop SSOP,
Washington, DC 20402-0001
COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
JUDD GREGG, New Hampshire, Chairman
BILL FRIST, Tennessee EDWARD M. KENNEDY, Massachusetts
MICHAEL B. ENZI, Wyoming CHRISTOPHER J. DODD, Connecticut
LAMAR ALEXANDER, Tennessee TOM HARKIN, Iowa
CHRISTOPHER S. BOND, Missouri BARBARA A. MIKULSKI, Maryland
MIKE DeWINE, Ohio JAMES M. JEFFORDS (I), Vermont
PAT ROBERTS, Kansas JEFF BINGAMAN, New Mexico
JEFF SESSIONS, Alabama PATTY MURRAY, Washington
JOHN ENSIGN, Nevada JACK REED, Rhode Island
LINDSEY O. GRAHAM, South Carolina JOHN EDWARDS, North Carolina
JOHN W. WARNER, Virginia 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 EDWARD M. KENNEDY, Massachusetts
JEFF SESSIONS, Alabama JEFF BINGAMAN, New Mexico
JOHN ENSIGN, Nevada JACK REED, Rhode Island
Karla Carpenter, Staff Director
David Nexon, Minority Staff Director
(ii)
C O N T E N T S
__________
STATEMENTS
WEDNESDAY, APRIL 28, 2004
Page
DeWine, Hon. Mike, a U.S. Senator from the State of Ohio, opening
statement...................................................... 1
Reed, Hon. Jack, a U.S. Senator from the State of Rhode Island,
opening statement.............................................. 2
Dodd, Hon. Christopher J., a U.S. Senator from the State of
Connecticut, opening statement................................. 4
Kennedy, Hon. Edward M., a U.S. Senator from the State of
Massachusetts, prepared statement.............................. 7
Collins, Hon. Susan M., a U.S. Senator from the State of Maine,
prepared statement............................................. 8
Osofsky, Joy D., Professor of Pediatrics, Psychiatry, and Public
Health, Louisiana State University Health Sciences Center, and
President, Board of Directors, Zero to Three; Marleen Wong,
Director, Crisis Counseling and Intervention Services, Los
Angeles Unified School District, Los Angeles, CA, and Director,
School Crisis and Intervention Unit, National Center for Child
Traumatic Stress, UCLA and Duke University; Louise A. Douce,
Director, Counseling and Consultation Services, the Ohio State
University; Maryann Davis, Assistant Professor, Center for
Mental Health Services Research, Department of Psychiatry,
University of Massachusetts Medical School, Worcester, MA;
Linda Champion, Child Advocate, National Alliance for the
Mentally Ill, and Vice President, Alabama Family Ties,
Montgomery, AL, and Barbara Altenburger, Family Advocate,
Parents Involved Network, Mental Health Association of
Southeastern Pennsylvania, Philadelphia, PA.................... 12
Prepared statements of:
Joy D. Osofsky........................................... 14
Marleen Wong, LCSW....................................... 23
Louise A. Douce, Ph.D.................................... 34
Maryann Davis, Ph.D...................................... 38
Sessions, Hon. Jeff, a U.S. Senator from the State of Alabama,
opening statement.............................................. 44
Altenburger, Barbara, prepared statement......................... 51
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.:
Response to questions of Senator Reed from Joy Osofsky....... 20
Response to questions of Senator Bingaman from Marleen Wong.. 28
Response to questions of Senator Bingaman from Maryann Davis. 40
Response to questions of Senator Reed from Maryann Davis..... 42
Response to questions of Senator Bingaman from Linda M.
Champion................................................... 46
The Keeping Families Together Act (S.1704)................... 66
American Academy of Child and Adolescent Psychiatry.......... 67
Michael Faenza, National Mental Health Association........... 72
Susan Mikolic, Parent and Advocate........................... 74
The National Child Traumatic Stress Network (NCTSN).......... 82
(iii)
MENTAL HEALTH IN CHILDREN AND YOUTH: ISSUES THROUGHOUT THE
DEVELOPMENTAL PROCESS
----------
WEDNESDAY, APRIL 28, 2004
U.S. Senate,
Subcommittee on Substance Abuse and Mental Health Services,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The subcommittee met, pursuant to notice, at 10:05 a.m., in
room SD-430, Dirksen Senate Office Building, Hon. Mike DeWine
(chairman of the subcommittee) presiding.
Present: Senators DeWine, Sessions, and Reed.
Opening Statement of Senator DeWine
Senator DeWine. Good morning. Let me thank all of you for
being here today, and let me also welcome Senator Reed, with
whom I have worked on so many issues in the past concerning
children.
Today, we are meeting to talk about mental health issues
concerning children and youth throughout their developmental
process. The simple fact is that children and youth with
emotional and behavioral needs face tremendous challenges in
receiving care in our Nation today. Mental health care is
dispersed across many systems for children, including schools,
the juvenile justice system, the child welfare system, the
substance abuse treatment system, through their primary care
providers, and within their own families.
I have seen in my own home State of Ohio serious failures
in the child mental health system. Just a few weeks ago, a
series of disturbing stories ran in the Cincinnati Enquirer
regarding the children's mental health system in Ohio. These
articles focused on children who are mistreated at treatment
centers, are in families unable to afford necessary care, and
children whose parents give them up to child protection
services in order to receive treatment. The many shortcomings
of the current system resulted in mental health needs of
children not being met and actual harm being done to children
who were in the care of those paid to protect and help them.
Now, obviously, passing Senator Pete Domenici's mental
health parity legislation--officially called the Senator Paul
Wellstone Mental Health Equitable Treatment Act--would be the
best solution for many of the children in these articles, as
well as many children facing similar problems in other States.
We know that these children are many in number.
Each year, approximately 5 to 9 percent of children suffer
from serious mental illness or serious emotional disturbances.
However, fewer than one in five of these children will receive
needed treatment.
Early childhood is a critical time period to prevent the
onset of emotional and behavioral impairments. If these
children do not receive appropriate treatment or if their
illness is too severe, these children are more likely to
continue on paths which lead to expulsion from school and
child-care facilities for disruptive behavior, separation from
their family, visits to juvenile justice facilities, and
dropping out of high school.
Some of the issues concerning children and youth in the
mental health system were discussed at a hearing that we held
to examine the Final Report of the President's New Freedom
Commission on Mental Health. The report found that
fragmentation of the mental health system and gaps in care for
children were serious problems.
The report also stated that the multiple programs created
to finance and support children and youth with mental illness
help foster an approach that is complex, fragmented, and
inconsistent in its coverage, which makes the entire process
very difficult for parents or caretakers.
Mental health is absolutely fundamental to a person's
overall physical health and well-being and is critical to
leading a productive and balanced life. Our children and young
people deserve access to services that are appropriately and
effectively provided. That is why I have worked with Senator
Dodd and Senator Smith from Oregon to introduce the Youth
Suicide Early Intervention and Prevention Expansion Act--a bill
that would provide funding for the creation and expansion of
statewide youth suicide early intervention and prevention
strategies. Tragically, suicide is the third leading cause of
death of children and youth ages 10 to 24.
I have also been working with my friend, Senator Reed, on a
bill we have introduced called the Campus Care and Counseling
Act that would provide needed funds to mental and behavioral
health centers on our Nation's college and university campuses.
We know that rates of university-age students seeking care
while away at school are rising, and counseling centers are
struggling to keep up with these rising numbers.
I look forward to discussing all these issues today and
hearing the testimony from our witnesses. I believe that this
testimony will serve to educate us on issues concerning the
children and youth mental health system, and I am confident
that these recommendations will serve as a real starting point
for change and improvement.
Let me now turn to Senator Reed for his comments.
Opening Statement of Senator Reed
Senator Reed. Thank you very much, Mr. Chairman. Thank you
for calling today's hearing and also for your devoted and
consistent attempts to help children of the United States in so
many ways through the health care system. Thank you, Mr.
Chairman.
As we all know, today we are facing a crisis in the mental
health care system throughout the United States, particularly
when it comes to the needs of our children and young adults. I
would like to express my appreciation to the witnesses who are
here today. Each of today's panelists offer a unique
perspective on the critically important issue of children's
mental health. Thank you all very much.
The recent rash of suicides on college campuses throughout
this country has illustrated the dire consequences of failing
to address the mental health needs of our young people. Just
last week, the Washington Post reported the fifth suicide at
the George Washington University since December 2003.
A recent study of counseling center directors found that 81
percent were concerned about increasing numbers of students
with severe psychological problems, 67 percent reported a need
for more psychiatric services, and 63 percent reported problems
with the growing demand for services without an appropriate
increase in resources.
I would like to share with you a sampling of the type of
cases seen by just one counselor at the University of Rhode
Island: one student with depression and a recent suicide
attempt, one student with schizophrenia, two students with
self-cutting behaviors, three with drug and alcohol problems,
one victim of rape, two students with eating disorders, two
with difficulty adjusting to college life, and one with panic
attacks. And that is not even the entire caseload of this one
counselor.
Along with Senator DeWine, we introduced the Campus Care
and Counseling Act to increase access and enhance mental and
behavioral health services for our college students. This bill
authorizes grants to colleges and universities for a range of
activities, including prevention, screening, early
intervention, assessment, education, treatment, and ongoing
case management of mental and behavioral health problems.
College mental health is just one piece, though, in the
complicated puzzle of children's mental health. For young
children in particular, access to care is a critical problem.
In Rhode Island, as in most communities in this country, we are
suffering from a severe shortage of child psychiatrists. The
lack of competent providers, combined with limited outpatient
mental health services, few substance abuse treatment programs,
and virtually nonexistent residential treatment facilities, has
left families literally with no place to turn.
With few options at hand to access treatment, some parents
are even forced to give up custody of their children just to
qualify for public mental health programs.
According to Dr. Greg Fritz, chairman of child psychiatry
at Brown University School of Medicine, emergency room visits
have tripled in the past 3 years. Outpatient clinics have
waiting lists of 2 months or more. Patients being discharged
from the hospital wind up being readmitted 6 weeks later
because they decompensate before their number comes up on the
waiting list for outpatient treatment.
We as a nation have failed children with mental illnesses
on many levels. They are often not diagnosed in a timely
fashion, they are treated by providers with minimal mental
health training, they are forced to bounce around between
various systems of care--if they are able to access mental
health services at all. Then when they finally figure out how
the system works and provided that they do not end up as one of
the many incarcerated mentally ill, they age out of the
adolescent system and have to start all over in their
transition into the adult mental health system, a system with
even less to offer them.
Last, I would note and echo the comments of the chairman
that tomorrow marks the 2-year anniversary of President Bush's
call on Congress to pass mental health parity legislation. I am
disappointed that, despite having broad support, Congress has
refused to act upon legislation that would aid millions of
Americans in obtaining needed mental health treatment and
renounce the current system that allows private mental health
insurance plans to discriminate with impunity when it comes to
mental health coverage.
I extend to my colleagues the hope that this hearing will
provide the impetus for us to take action on the Paul Wellstone
mental health parity act. It would be a fitting tribute to
literally a giant--well, not literally because we are the same
size, but a giant in the U.S. Senate.
[Laughter.]
Mr. Chairman, I also have a statement from Senator Dodd. As
you know, he is deeply interested in children's mental health,
particularly with youth suicide and the use of antidepressant
medication in children. He unfortunately is unable to attend
today's hearing but asked that his statement be included in the
record.
Senator DeWine. It will be made a part of the record.
[The prepared statement of Senator Dodd follows:]
Statement of Senator Dodd
Good Morning. I would like to begin by thanking Chairman
DeWine and Senator Reed, two of the Senate's strongest
advocates for children's mental health reform, for holding this
important hearing today. While I am not a member of this
Subcommittee, both Chairman DeWine and Senator Reed are aware
that the issue before this Subcommittee today is one that holds
great meaning to me. Unfortunately, while other Senate business
prevents me from attending today's hearing, I appreciate the
Chairman making my statement part of the hearing record.
I would also like to thank all of the witnesses who are
testifying today and all of those in attendance. It is very
encouraging for me to see that, collectively, you represent
many different specialty areas within the issue of children's
mental health--from initiatives designed to meet the needs of
infants to those designed to meet the needs of young adults,
from services and awareness campaigns designed to improve the
mental health of our children in primary and secondary schools
to those designed to improve the mental health of our young
people in college. I commend all of your hard work, and I
applaud your professional and personal commitment to this
issue. If we are to start making a meaningful difference today,
then we need the continued dedication and support of each and
every one of you.
I am heartened to see all of you here this morning; yet, in
a way, I am also disheartened. The fact that the United States
Senate needs to hear testimony from professionals and advocates
who come from across the children's mental health spectrum
clearly reflects the alarming fact that the problems we face as
a society in this issue also come from across the spectrum.
Ensuring that all of our children and young adults have
access to comprehensive mental health care that adequately and
fully addresses their individualized needs is one of the most
acute crises facing our society today. We all know the alarming
facts. According to most inter-agency studies done by the
Department of Health and Human Services, approximately 20
percent of children in our country suffer from a diagnosable
mental, emotional, or behavioral disorder, while up to 10
percent suffer from a serious disturbance or multiple
disorders. Yet, well over half of these children are unable to
access the appropriate community-based care they require.
Children and their families across this country, regardless of
their age, race, ethnicity, socioeconomic status, or location,
all too often find themselves facing a seriously fragmented
mental health delivery system--a system that all too often
fails to assess and diagnose disorders and their possible
causes accurately, cannot offer complete comprehensive
community-based care in the child's natural setting, employs
medical and health professionals who are well intentioned but
improperly trained, and cannot provide adequate financial and
emotional support, information, and hope. Clearly, these
widespread problems, compounded by the relative paucity of
research on the risk factors and causes of children mental
health disorders, speak to the urgent need for greater Federal
involvement in this area.
In my capacity as a Senator from Connecticut, I have
recently addressed two areas within the issue of children's
mental health: youth suicide prevention and the use of
antidepressant medications in children and young adults.
We all know that youth suicide is a grave crisis in the
United States. According to the Centers for Disease Control and
Prevention (CDC), more than 3,000 young people take their lives
each year, making suicide the third overall cause of death
between the ages of 10 and 24. We also know that youth suicide
is intricately linked to mental health--specifically to
disorders like depression and substance abuse. More than 90
percent of young people who attempt suicide are found to suffer
from a mental, emotional, and behavioral disturbance.
I am pleased that we have already taken several positive
steps toward better understanding the tragedy of youth suicide
and its emotional and behavioral risk factors--both on the
Federal and local levels. Today, hundreds of community-based
programs and statewide collaborative strategies across the
country offer a variety of early intervention and prevention
services to thousands of children and young adults--services
that include comprehensive screening, assessment, and
individualized counseling. However, we still face significant
challenges in this area. As we all know too well, a large
number of States and localities are finding themselves with
unprecedented budget deficits--making the establishment of new
services and the retention of existing services increasingly
more difficult.
I have introduced bipartisan legislation with Chairman
DeWine along with Senators Gordon Smith and Harry Reid. This
legislation, the Youth Suicide Early Intervention and
Prevention Expansion Act of 2004, seeks to support further the
good work being done on the community level, the State level,
and the Federal level with regards to youth suicide. Through
the establishment of a new grant initiative, this legislation
supports the further development and expansion of statewide
youth suicide early intervention and prevention strategies and
the community-based services they seek to coordinate. It also
encourages greater Federal support in the planning,
implementation, and evaluation of these strategies and services
and creates a new inter-agency collaboration that promises to
focus on research, policy development, and the dissemination of
data specifically pertaining to youth suicide. Along with
Chairman DeWine, I am fully committed in working to pass the
legislation this year.
Although today's hearing is not focused on prescription
drug treatment for depression in adolescents and children, I
would like to touch on the issue briefly. Last Friday, the
Washington Post reported on the results of a study published in
the Lancet, a British medical journal, showing an increase in
the risk of suicidal behavior among children taking four
popular antidepressants. The study also showed no measurable
benefit to children. This disturbing report added to the
growing questions surrounding the use of antidepressants, and
specifically the class of drugs known as selective serotonin
reuptake inhibitors (SSRIs), in children.
SSRIs are prescribed to millions of American children each
year, and that number continues to increase. Families and
physicians caring for children suffering from depression are
desperate for answers about the appropriate use of
antidepressants. While many experts insist that antidepressants
can be a critical component of care, parents cannot help but
take reports of ineffectiveness and increased risk seriously.
It is imperative that questions surrounding SSRIs are
answered as quickly as possible. If these drugs do indeed pose
a risk to children, physicians and the public must be made
aware of that risk immediately. On the other hand, it is
equally important to discover the truth in the case that SSRIs
do not pose a threat to children's well-being, so that doctors
can continue to prescribe these life-saving medicines without
fear. In the current environment of uncertainty, there is a
legitimate concern that children who now benefit, or who may
benefit, from SSRIs will be inappropriately denied access to
these drugs.
Yesterday, I sent a letter to Acting FDA Commissioner
Lester Crawford urging the agency to bring some clarity to this
issue as soon as possible. This letter was a follow-up to a
letter that I sent on March 1 to then-Commissioner Mark
McClellan, along with nine of my Senate colleagues. In that
earlier letter, we asked the FDA to consider invoking its
authority to require additional testing of SSRIs to determine
once and for all whether or not these drugs benefit our
children. With the recent report in the Lancet, our request has
taken on even greater urgency.
I have asked Acting Commissioner Crawford to share with me
the FDA's plans to address this issue. I have also offered to
help in whatever way I can, so that families can be confident
that their children are receiving the best possible care. We
must get to the bottom of this issue as soon as possible.
Lastly, Mr. Chairman, no discussion of mental health would
be complete without mentioning the critical absence of parity
between our mental and physical healthcare systems. Two years
ago this week President Bush endorsed the notion that there is
need for equity between these two disparate systems. Sadly,
however, legislation ensuring parity, originally championed by
our dear friend Senator Paul Wellstone, has yet still failed to
pass, despite the co-sponsorship of close to 70 members of the
Senate, including both the Chair and Ranking Member of this
Subcommittee. Mental health parity is critically essential not
only if we are to address the mental healthcare needs of our
children but also the needs of all Americans.
We have a societal obligation to break through the stigma
that is still unfortunately attached to children's mental
health--a stigma that still keeps these issues largely off our
television airwaves and the front pages of our newspapers. We
have an obligation to reach out to our young people--to help
them understand that whatever difficulties or illnesses they
might be experiencing are only temporary and treatable in a
comfortable setting. And, most important, we have an obligation
to instill in our young people a sense of value, self-worth,
and resilience. Therefore, I am fully committed to working with
each of you--doctors, psychiatrists, psychologists, counselors,
nurses, teachers, advocates, and affected families--so that we
can better understand the causes of mental health disorders and
develop effective mental health initiatives and services that
reach every child and young adult in this country--
compassionate initiatives that give them encouragement, hope,
and above all, life.
Senator Reed. I thank the chairman again for holding
today's hearing, and I look forward to working with him on
these critical issues and listening to these outstanding
witnesses.
Thank you, Mr. Chairman.
Senator DeWine. Senator Reed, thank you very much.
At this time I would like to submit a prepared statement
from Senators Kennedy and Collins to be included in the record.
[The prepared statement of Senator Kennedy follows:]
Prepared Statement of Senator Edward M. Kennedy
Thank you, Senator DeWine, for convening this important
hearing and for your strong commitment to the well-being of the
nation's children.
As the report of the President's New Freedom Commission
stated, our mental health care system is in crisis. The quality
of care isn't good enough, access, isn't broad enough, and the
whole system isn't consumer-oriented enough.
No group in our population bears a greater burden of this
failure than the young. One in five children and adolescents
have mental health disorders, but three-quarters of them never
receive the care they need. The large racial disparities in
access to care and quality of care are serious problems as
well.
The results of this failure are higher school drop-out
rates, more frequent family conflicts, higher rates of drug
abuse and violence and higher rates of anxiety disorders,
depression, and even suicide.
It is clear that we can do much more to prevent, treat, and
cure mental illness in children. The panelists here today
demonstrate that it is a problem we must meet at all stages of
development.
The recommendations of the New Freedom Commission offer us
a unique opportunity to act effectively. One of the key
recommendations is to improve mental health care services in
schools.
Schools have become the de facto providers of mental health
care for children. In fact, 80 percent of the children who
receive mental health care services receive them in schools.
But the care in schools is plagued by the same factors that
plague other systems of care--not enough funds, not enough
personnel, poor quality of care, little involvement of parents,
and few prevention efforts.
In addition, the lack of research and dissemination of
evidence-based practices has meant few advances in intervention
and treatment.
Complex and costly care has led to families doing the
unthinkable--giving up custody of their child to the child
welfare system or juvenile justice system in order to obtain
services, even though such systems are ill-prepared to meet
their needs. A lack of parity in financing for mental health
care for children has contributed greatly to this disturbing
defect.
It's clear we can't afford to wait any longer to make
urgently needed improvements, and I look forward to working
with Senator DeWine, Senator Reed and other Members of the
Subcommittee on the recommendations made by today's panelists.
[The prepared statement of Senator Collins follows:]
Prepared Statement of Senator Susan M. Collins
I want to commend the Subcommittee Chairman for holding
this hearing to examine mental health issues in children and
youth throughout the developmental process. Unfortunately, I am
chairing a Governmental Affairs Committee hearing this morning,
so I am unable to deliver my testimony in person, but I
appreciate the Chairman's kind offer to make certain that it is
included as a part of the hearing record.
Serious mental illness afflicts millions of our nation's
children and adolescents. It is estimated that as many as 20
percent of American children under the age of 17 suffer from a
mental, emotional or behavioral illness. What I find most
disturbing, however, is the fact that two-thirds of all young
people who need mental health treatment are not getting it.
Behind each of these statistics is a family that is
struggling to do the best it can to help a son or daughter with
serious mental health needs to be just like every kid--to
develop friendships, to do well in school, and to get along
with their siblings and other family members. These children
are almost always involved with more than one social service
agency, including the mental health, special education, child
welfare and juvenile justice systems. Yet no one agency, at
either the State or the Federal level, is clearly responsible
or accountable for helping these children and their families.
My interest in this issue was triggered by a compelling
series of stories by Barbara Walsh in the Portland Press Herald
which detailed the obstacles that many Maine families have
faced in getting desperately needed mental health services for
their children.
Too many families in Maine and elsewhere have been forced
to make wrenching decisions when they have been advised that
the only way to get the care that their children so desperately
need is to relinquish custody and place them in either the
child welfare or juvenile justice system.
Yet neither system is intended to serve children with
serious mental illness. Child welfare systems are designed to
protect children who have been abused or neglected. Juvenile
justice systems are designed to rehabilitate children who have
committed criminal or delinquent acts. While neither of these
systems is equipped to care for a child with a serious mental
illness, in far too many cases, there is nowhere else for the
family to turn.
Last year, I commissioned a GAO report with Representatives
Pete Stark and Patrick Kennedy that found that, in 2001,
parents placed more than 12,700 children into the child welfare
or juvenile justice systems so that these children could
receive mental health services.
Moreover, I believe that this is just the tip of the
iceberg, since 32 States--including the five States with the
largest populations of children--did not provide the GAO with
any data.
There have been other studies indicating that the custody
relinquishment problem is even more pervasive. A 1999 survey by
the National Alliance for the Mentally Ill found that 23
percent--or one in four parents surveyed--had been told by
public officials that they needed to relinquish custody of
their children to get care, and that one in five of these
families had done so.
While some States have passed laws to limit or prohibit
custody relinquishment, simply banning the practice is not a
solution, since it can leave mentally ill children and their
families without services and care. Custody relinquishment is
merely a symptom of the much larger problem, which is the lack
of available, affordable, and appropriate mental health
services and support systems for children with serious mental
health needs and their families.
I chaired a series of hearings in the Governmental Affairs
Committee last summer to examine this issue further. We heard
compelling testimony from mothers who told us that they were
advised that the only way to get the intensive care and
services that their children needed was to relinquish custody
and place them in the child welfare system. This is a wrenching
decision that no family should be forced to make. No parent
should have to give up custody of his or her child just to get
the services that the child needs.
The mothers also described the barriers they faced in
getting care for their children. They told us about the
limitations in both public and private insurance coverage. They
also talked about the lack of coordination and communication
among the various agencies and programs that serve children
with mental health needs. One parent, desperate for help for
her twin boys, searched for 2 years until she finally located a
program--which she characterized as ``the best kept secret in
Illinois''--that was able to help.
Parents should not be bounced from agency to agency,
knocking on every door they come to, in the hope that they will
happen upon someone who has an answer. It simply should not be
such a struggle for parents to get services and treatment for
their children.
The Keeping Families Together Act, which I have introduced
with a bipartisan group of my colleagues, would help to reduce
the barriers to care for children with serious mental health
needs and would assist States in eliminating the practice of
parents relinquishing custody of their children solely for the
purpose of securing mental health services.
The legislation authorizes $55 million for competitive
grants to States to create an infrastructure to support and
sustain statewide systems of care to serve children who are in
custody or at risk of entering custody of the State for the
purpose of receiving mental health services. States already
dedicate significant dollars to serve children in State
custody. These Family Support Grants would help states serve
children more effectively and efficiently, while keeping them
at home with their families.
The legislation would also remove a current statutory
barrier that prevents more States from using the Medicaid home
and community-based services waiver to serve children with
serious mental health needs. This waiver provides a promising
way for States to address the underlying lack of mental health
services for children that often leads to custody
relinquishment. While a number of States have requested these
waivers to serve children with developmental disabilities, very
few have done so for children with serious mental health
conditions. Our legislation would provide parity to children
with mental illness by making it easier for States to offer
them home- and community-based services under this waiver as an
alternative to institutional care.
The Keeping Families Together Act takes a critical step
forward to meeting the needs of children with mental or
emotional disorders and their families. Attached to my
testimony is a more detailed summary of the Keeping Families
Together Act, and I urge all of the Members of the Subcommittee
to work with me so that we can get this legislation passed and
signed into law before the end of the year.
Again, Mr. Chairman, thank you for allowing me to submit my
testimony, and I look forward to working with you to ensure
that appropriate and affordable mental health services and
support systems are available for all children and young people
with mental health needs and their families.
Let me introduce the panel. I will introduce all the
members of the panel. We will keep your statements to 5
minutes. We are going to be fairly tight on that because that
will give us an opportunity to ask some questions and hear your
comments.
On our panel this morning, I would first like to introduce
Dr. Joy Osofsky. She is currently professor of Pediatrics,
Psychiatry, and Public Health at Louisiana State University
Health Sciences Center in New Orleans and is the head of the
Division of Pediatric Mental Health. She serves as director of
the Violence Intervention Program for Children and Families and
the Harris Center for Infant Mental Health. The doctor has
published and edited numerous articles on the effects of
violence in young children, and in June of this year, she will
publish an edited book titled ``Young Children and Trauma.''
She is president of Zero to Three: National Center for Infants,
Toddlers, and Families, and in 2002, she was awarded the
Nicholas Hobbs Award for contributions to public policy by
Division 37 of the American Psychological Association.
Next, let me introduce Marleen Li Chen Wong. She is the
director of Mental Health, District Crisis Intervention Teams,
and Suicide Intervention Programs for the Los Angeles Unified
School District, the second largest school district in the
United States. She has administrative responsibility for four
outpatient child clinics, a staff of 186 clinical social
workers and clinical psychologists, child psychiatrists, and
community workers; and 350 district crisis team members. She is
also responsible for administering the mental health
consultation program in over 100 children's day care centers in
Los Angeles Unified School District schools. She is currently
serving as director of the School Crisis and Disaster Recovery
Program at the National Center for Child Traumatic Stress at
UCLA and Duke University.
Next, let me introduce Dr. Louise Douse. She is the
director of the Counseling and Consultation Service at the Ohio
State University, which serves the full range of counseling and
mental health needs of the Ohio State University student body.
She is a specialist in college student mental health and has
been counseling college students for the past 25 years. She is
the immediate past president of the Society of Counseling
Psychology, Division 17 of the American Psychological
Association, and in the year 2003, the Association of
University and College Counseling Center Directors presented
her with the Lifetime Achievement Award.
Next, I would like to introduce Dr. Davis. Dr. Davis is
currently an assistant professor in the Department of
Psychiatry at the University of Massachusetts and a faculty
member of the Center for Mental Health Services Research. Her
current efforts focus on the mental health needs of children
transitioning into adulthood. Dr. Davis has designed and
implemented a transition support project, Project Nexus, to
assist children with mental health needs during this difficult
transitional period. Dr. Davis also serves as a consultant to
the Center for Mental Health Services of the Substance Abuse
and Mental Health Services Administration on their evaluation
program of the Partnership for Youth Transition grant program.
Let me also introduce Linda Champion. Since 2002, Mrs.
Champion has served as a data analyst for the Alabama
Department of Mental Health and Mental Retardation. She is the
vice president of Alabama Family Ties, an advocacy group which
advocates for children and adolescents with mental illness.
Mrs. Champion is also the Children's Issues Advisor to the
National Alliance for the Mentally Ill in Alabama and serves on
numerous planning committees working with the State of Alabama
Department of Mental Health and Mental Retardation.
Finally, let me introduce Barbara Altenburger. As the
parent of an adolescent with serious emotional and behavioral
disorders, she has had to navigate the children's mental health
system herself and, therefore, can offer great insight to us.
We commend her commitment to helping us all better understand
this important and complex issue. She serves as a family
advocate at Parents Involved Network of Philadelphia, a program
of the Mental Health Association of Southeastern Pennsylvania.
In addition to her work with the Parents Involved Network, she
has shared her experiences at local workshops and conferences
and is a long-time advocate for improved mental health and
related services for children, adolescents, and their families.
We thank all of you very much for joining us, and we
appreciate it. We look forward to all of your testimony. We
will start on my right with Dr. Osofsky. Doctor, thank you very
much.
STATEMENTS OF JOY D. OSOFSKY, PROFESSOR OF PEDIATRICS,
PSYCHIATRY, AND PUBLIC HEALTH, LOUISIANA STATE UNIVERSITY
HEALTH SCIENCES CENTER, AND PRESIDENT, BOARD OF DIRECTORS, ZERO
TO THREE; MARLEEN WONG, DIRECTOR, CRISIS COUNSELING AND
INTERVENTION SERVICES, LOS ANGELES UNIFIED SCHOOL DISTRICT, LOS
ANGELES, CA, AND DIRECTOR, SCHOOL CRISIS AND INTERVENTION UNIT,
NATIONAL CENTER FOR CHILD TRAUMATIC STRESS, UCLA AND DUKE
UNIVERSITY; LOUISE A. DOUCE, DIRECTOR, COUNSELING AND
CONSULTATION SERVICES, THE OHIO STATE UNIVERSITY; MARYANN
DAVIS, ASSISTANT PROFESSOR, CENTER FOR MENTAL HEALTH SERVICES
RESEARCH, DEPARTMENT OF PSYCHIATRY, UNIVERSITY OF MASSACHUSETTS
MEDICAL SCHOOL, WORCESTER, MA; LINDA CHAMPION, CHILD ADVOCATE,
NATIONAL ALLIANCE FOR THE MENTALLY ILL, AND VICE PRESIDENT,
ALABAMA FAMILY TIES, MONTGOMERY, AL; AND BARBARA ALTENBURGER,
FAMILY ADVOCATE, PARENTS INVOLVED NETWORK, MENTAL HEALTH
ASSOCIATION OF SOUTHEASTERN PENNSYLVANIA, PHILADELPHIA, PA
Ms. Osofsky. Mr. Chairman and Members of the Committee, I
am delighted to have the opportunity to appear before you today
on behalf of Zero to Three. As you introduced me, I am Joy
Osofsky, a professor of pediatrics, psychiatry, and public
health at Louisiana State University Health Sciences Center,
and president of the board of directors of Zero to Three. Zero
to Three is a national, nonprofit organization that has worked
to advance the healthy development of America's babies and
toddlers for over 25 years. I would like to start by thanking
the committee for their interest in addressing the mental
health needs of infants, toddlers, and families, and I would
particularly like to thank you, Mr. Chairman, for your
leadership in helping to address the mental health needs of our
most vulnerable infants and toddlers, those involved in the
child welfare system through your support of the Court Teams
for Change Project, an effort that I will describe in a few
minutes.
Despite what we know from science and research, discussions
on children's mental health have consistently excluded babies
and toddlers, focusing instead on school-age children and
adolescents. Although they cannot talk to us about what they
are feeling like older children can, sometimes referred to as
``silent victims,'' babies and toddlers have many ways of
communicating, and we have many ways to assess their social and
emotional needs.
Unfortunately, some infants and toddlers experience mental
health problems. Their early social and emotional development
is vulnerable to such factors as repeated exposure to violence,
persistent fear and stress, abuse and neglect, severe chronic
maternal depression, or biological factors such as prematurity
and low birthweight and conditions associated with substance
abuse.
Babies do not exist in isolation. The parent's mental
health can also affect the young child. Conditions such as
maternal depression and anxiety disorders can disrupt
parenting. For example, infants of mothers who have chronic,
untreated depression often withdrawn, ultimately affecting
their language skills, as well as their physical and cognitive
development.
The message I want to convey today, however, is not a
pessimistic one. When we do identify these children and their
parents, we know how to provide effective infant mental health
interventions for the baby and for the significant adults in
the baby's life. These interventions can prevent or ameliorate
the effects of negative early experiences. What we are missing
is the widespread awareness of the problem, the systems to
identify children who are affected, and readily accessible
services to meet their needs.
So why should we care about infant mental health? First,
learning to regulate emotions and developing secure attachments
form the very foundation of a child's ability to learn, and
infants cannot wait. The early years are a period of extremely
rapid brain growth, wiring and pruning of neuronal connections.
The pathways that are laid down in these early years are the
ones that will guide the child's reactions and emotions for the
rest of her life.
Second, science supports our concern. The National Academy
of Sciences report ``From Neurons to Neighborhoods'' concluded
that the elements of early childhood programs that enhance
social and emotional aspects of development are just as
important as those supporting cognitive and linguistic
competence. The goal of ensuring that all children are ready
for school has become a national priority. Young children who
do not achieve early social and emotional milestones perform
poorly in the early school years and are at higher risk for
school problems and juvenile delinquency later in life.
Infants and toddlers in foster care represent a group of
children that are extremely vulnerable. Juvenile and family
court judges are uniquely positioned to improve the well-being
of infants and toddlers in the child welfare system to ensure
that they are receiving the resources and supports they need to
address their social and emotional needs.
I have been involved in developing an approach to working
with these young children in Miami-Dade Juvenile Court. Three
years of data show substantial gains in improving social and
emotional development of infants, toddlers, and their families.
Of the families selected to receive the intervention, 58
percent of the children improved in their developmental
functioning, 100 percent of the infants were reunified with
their families, and substantiated reports of abuse and neglect
were reduced from 97 percent to zero.
The Federal Government is in a unique position to support
the documented and growing needs of mental health services for
infants, toddlers, and families. While some child-related
services such as early Head Start and Part C early intervention
address infant mental health, only a small number of children
meet the eligibility requirements of these programs. Zero to
Three recommends that the mental health needs of infants,
toddlers, and families be recognized and addressed in bills
currently up for reauthorization, including Head Start,
Individuals with Disabilities Education Act, Child Care
Development Fund, and Substance Abuse and Mental Health
Services Administration.
These recommendations are supported by findings in
President Bush's New Freedom Commission on Mental Health, as
well as the National Research Council Institute of Medicine
report ``From Neurons to Neighborhoods: The Science of Early
Childhood Development.''
Our recommendations are as follows:
One, strengthen infant and early childhood mental health
services and integrate such services into all child-related
services and systems.
Two, assure earlier identification and intervention of
mental health problems and disorders in infants, toddlers, and
their parents.
Three, develop system capacity through professional
development/training of service providers.
Four, assure comprehensive mental health services for
infants and toddlers in foster care.
Five, provide infant/toddler child-care programs with
access to mental health consultation and support.
Six, support and advance evidence-based practices in infant
and early childhood mental health through the establishment of
a national infant mental health resource center.
In conclusion, Mr. Chairman, existing Federal, State, and
community programs for young children should be used as
foundations to expand and improve infant mental health
services. Although research is clear in demonstrating the
importance of healthy social and emotional development at the
earliest stages of life in assuring school readiness and
developing healthy relationships later in life, we have not
translated this knowledge into what we do for babies and
toddlers. If we truly desire children to be ready to learn,
much less to grow up as healthy adults, we need to make a
concerted effort to address the critical mental health needs of
our youngest children and families.
Thank you very much.
Senator DeWine. Doctor, thank you.
[The prepared statement of Ms. Osofsky follows:]
Prepared Statement of Joy D. Osofsky
Mr. Chairman and Members of the Committee, I am delighted to have
the opportunity to appear before you today on behalf of ZERO TO THREE.
I am Joy Osofsky, a psychologist and Professor of Pediatrics,
Psychiatry, & Public Health at Louisiana State University Health
Sciences Center and President of the Board of Directors of ZERO TO
THREE. ZERO TO THREE is a national non-profit organization that has
worked to advance the healthy development of America's babies and
toddlers for over 25 years. I would like to start by thanking the
committee for their interest in addressing the mental health needs of
infants, toddlers, and their families. I would also like to
particularly thank Senator DeWine for his leadership in helping to
address the mental health needs of our most vulnerable infants and
toddlers, those involved in the child welfare system through his
support of the Court Teams for Change Project, an effort that I will
describe in just a few minutes.
what is infant mental health?
Despite what we know from science and research, discussions on
children's mental health have consistently excluded babies and
toddlers, focusing instead on school-age children and adolescents.
Although they cannot talk to us about what they are feeling like older
children can, babies and toddlers have many ways of communicating, and
we have many ways to assess their social and emotional needs.
Most babies experience healthy social and emotional development.
They smile and coo, cry and recover, and become social beings. Babies
and toddlers with typical mental health have the capacity to
experience, regulate and express emotions; form close and secure
interpersonal relationships; and explore the environment and learn. The
healthy mental development of babies and toddlers is dependent upon
their ability to manage their feelings, develop trust with others, and
learn about the world in which they live.
This all happens as infants and toddlers work to make sense of
their environment. It is then that they first find their efforts
encouraged--or not; first attempt to concentrate and find that
possible--or not; first conclude that the world seems organized and
reasonably predictable--or not; first learn that others are basically
supportive--or not. It is in the first years of life that the
foundations for empathy, trust, curiosity, and competence are laid
down.
Attachment is one of the most critical developmental tasks of
infancy. We know from the science of early childhood development that
early relationships and attachments to a primary caregiver are the most
consistent and enduring influence on social and emotional development
for young children.\1\ Infants and toddlers who are able to develop
secure attachments are observed to be more mature and positive in their
interactions with adults and peers than children who lack secure
attachments.\2\ They may also have a better self-concept, more advanced
memory processes, and a better understanding of emotions.\3\ Those who
do not have an opportunity to form a secure attachment with a trusted
adult (for example, infants and toddlers who experience multiple foster
homes) suffer grave consequences. Their development can deteriorate,
resulting in delays in cognition and learning, relationship
dysfunction, difficulty expressing emotions, and future mental health
disorders.
---------------------------------------------------------------------------
\1\ Shonkoff, J., & Phillips, D. (Eds.). (2000). From neurons to
neighborhoods: The science of early childhood development. Washington,
DC: National Academy Press.
\2\ Ibid.
\3\ Ibid.
---------------------------------------------------------------------------
Unfortunately, some infants and toddlers experience mental health
problems. The early social and emotional development of babies and
toddlers is vulnerable to such factors as repeated exposure to
violence, persistent fear and stress, abuse and neglect, severe chronic
maternal depression, biological factors such as prematurity and low
birth weight, and conditions associated with prenatal substance abuse.
Without intervention, these risk factors can result in mental health
disorders. In babies and toddlers, the effects of these factors may
look like excessive and inconsolable crying; a heightened sensitivity
to touch and cuddling; excessive biting, kicking and hitting; inability
to focus on activities, flat affect (no expression, no emotions) and
depression. Infant mental health intervention for the baby, and for the
significant adults in the baby's life, can prevent or ameliorate the
effects of negative early experiences.
Unlike adults, babies and toddlers have fairly limited ways of
responding to stress and trauma. They may respond through inconsolable
crying, withdrawal from daily activities, sleeplessness or lack of
appetite due to depression, anxiety, and traumatic stress reactions,
poor weight gain, or aggressive behavior in older toddlers. If the
underlying causes of the stress are not addressed, they can develop
into serious mental health disorders, including depression, attachment
disorders, and traumatic stress disorders. Infants can experience
withdrawal and depression as early as 4 months of age.\4\
Unfortunately, despite the severe consequences, these disorders are not
being identified. Neither parents nor most providers know enough about
how to identify the early warning signs to make effective referrals.
---------------------------------------------------------------------------
\4\ Luby, J. (2000). Depression. In C. Zeanah (Ed). Handbook of
Infant Mental Health (pp. 296-382).
---------------------------------------------------------------------------
Babies do not exist in isolation. The parent's mental health can
also affect the young child. Conditions such as maternal depression and
anxiety disorders can disrupt parenting. For example, infants of
mothers who have severe chronic, untreated depression often withdraw,
ultimately affecting their language skills, as well as physical and
cognitive development. Older children of depressed mothers show poor
self-control, aggression, poor peer relationships, and difficulty in
school. \5\
---------------------------------------------------------------------------
\5\ Embry, L. and Dawson, G. (2002). Disruptions in parenting
behavior related to maternal depression: Influences on children's
behavioral and psychobiological development. In J. Borkowski, S.,
Ramey, C. & Bristol-Powers, M. (Eds). Parenting and the young child's
world. (pp. 203-214) Mahwah, NJ: Erlbaum.
---------------------------------------------------------------------------
Ultimately, for the very young child, mental health disorders will
have a significant effect on later school performance and life
successes. In fact, more and more young children are being expelled
from child care and preschool for behavior problems, and supports are
not available for these children, their parents, or their caregivers.
Without early identification, assessment and effective intervention
these problems will escalate.
Given the importance of social and emotional development in the
first 3 years of life, the scarcity of data on the mental health of
babies and toddlers is disappointing, but not surprising, considering
the lack of attention to social and emotional development in infants
and toddlers. Although no data are available for children under age 3,
it is estimated that between 2 percent and 8 percent of all children
under the age of 18 are reported to have a mental/emotional problem or
functional limitation.\6\,\7\ If these same estimates are
applied to the birth to 3-age population, between 228,000 to 913,000
infants and toddlers are at risk of mental health disorders.
---------------------------------------------------------------------------
\6\ Colpe, L. (2000). Estimates of mental and emotional problems,
functional impairments, and associated disability outcomes for the U.S.
child population in households. Retrieved April 24, 2003, from
www.mentalhealth.org/publications.
\7\ Halfon, N. & Newacheck, P. (1999). Prevalence and impact of
parent-reported disabling mental conditions among U.S. children.
Journal of the American Academy of Child and Adolescent Psychiatry,
38(5), 600-609.
---------------------------------------------------------------------------
why should we care about infant mental health?
Learning to regulate emotions and developing secure attachments are
not simple, pleasant milestones in a baby's development that take a
backseat to the growth of cognitive skills as a child prepares to enter
school. Rather, they are the very foundation of the child's ability to
learn. A child who has not developed consistent, positive relationships
with adults, cannot regulate his own emotions, cannot consider the
emotions of his peers, does not trust adults, has difficulty in being
motivated to learn, or cannot calm himself to tune into teaching will
not benefit from early educational experiences.
There are many good reasons to care about early social and
emotional development. First, infants can't wait. The early years are a
period of extremely rapid brain growth, wiring and pruning of neuronal
connections. The pathways that are laid down in these early years are
the ones that will guide the child's reactions and emotions for the
rest of her life. Second, science supports our concern. The National
Academy of Sciences report From Neurons to Neighborhoods \8\ concluded
that the elements of early childhood programs that enhance social and
emotional aspects of development are just as important as the component
that support cognitive and linguistic competence.
---------------------------------------------------------------------------
\8\ Shonkoff, J. & Phillips, D. (Eds.) (2000). From neurons to
neighborhoods: The science of early childhood development. Washington,
DC: National Academy Press.
---------------------------------------------------------------------------
The goal of ensuring that all children are ``ready for school'' has
become a national priority. As a result, programs that support
children's school readiness are becoming more and more important to
policy-makers, parents, and the general public. It is becoming very
clear that efforts to improve school success cannot begin at preschool,
nor focus exclusively on academics. In fact, studies suggest that
emotional, social, and behavioral competence is a strong predictor of
academic performance in elementary school. Young children who do not
achieve early social and emotional milestones perform poorly in the
early school years, and are at higher risk for school problems and
juvenile delinquency later in life.\9\
---------------------------------------------------------------------------
\9\ Raver, C. (2002). Emotions matter: Making the case for the role
of young children's emotional development for early school readiness.
Social Policy Report of the Society for Research in Child Development,
16(1) 3-23.
---------------------------------------------------------------------------
Finally, we should all care about early social and emotional
development because barriers exist for families and providers, and our
inaction is making the problem of accessing infant mental health
services worse. Barriers include the scarcity of infant mental health
providers and supervisors; the lack of awareness by the general public,
policy-makers, parents, teachers, health care providers and others
about the importance of early social and emotional development; limited
funding for infant mental health services; lack of capacity to provide
mental health services to parents along with their children; reluctance
by families to use mental health services; and the overall lack of
application of scientific knowledge to practice.
federal recommendations
The Federal Government is in a unique position to support the
documented and growing needs of mental health services for infants,
toddlers, and families. While some child related services, such as
Early Head Start and Part C Early Intervention address infant mental
health, only a small number of children meet the eligibility
requirements of these programs. ZERO TO THREE recommends that the
mental health needs of infants, toddlers, and families be recognized
and addressed in bills currently up for reauthorization including Head
Start, Individuals with Disabilities Education Act (IDEA), Child Care
Development Fund (CCDF), and Substance Abuse and Mental Health Services
Administration (SAMHSA). These recommendations are supported by
findings in President Bush's New Freedom Commission on Mental Health
(2003) as well as in the National Research Council Institute of
Medicine report From Neurons to Neighborhoods: The Science of Early
Childhood Development (2000). \10\,\11\ Our recommendations
are as follows:
---------------------------------------------------------------------------
\10\ New Freedom Commission on Mental Health (2003). Achieving the
promise: Transforming mental health care in America. Executive Summary.
DHHS Publication No. SMA-03-3831. Rockville, MD: U.S. Department of
Health and Human Services.
\11\ Shonkoff, J. & Phillips, D. (Eds.) (2000). From neurons to
neighborhoods: The science of early childhood development. Washington,
DC: National Academy Press.
---------------------------------------------------------------------------
1. Strengthen infant and early childhood mental health services and
integrate such services into all child-related services and systems.
Infant mental health services are scarce. Where they do exist, they
are fragmented and disconnected from the settings and services most
frequently used by young children and families. Infant and early
childhood mental health services across the continuum of promotion,
prevention, and treatment must be created, expanded, and improved.
Services must be comprehensive: they should promote healthy social and
emotional development for all young children, provide prevention
services for families of young children experiencing or at risk of
experiencing situations that jeopardize healthy social and emotional
development, and provide individualized treatment services for children
who have mental health disorders.
Illinois has utilized this comprehensive approach in addressing
infant mental health. Evaluation of an integrated mental health
approach in Illinois documented the effectiveness of including Social
Emotional Specialists in Part C Early Intervention programs. These
specialists provide training, technical assistance, as well as mental
health consultation to the managers, coordinators, and providers of the
Part C program. Evaluation findings revealed positive improvements in
practice that are helping programs to address all components of Part C,
easier access to mental health services, and earlier identification of
mental health disorders.
Social and emotional development is not an isolated issue. It
spills over into all areas of early childhood development. Infant
mental health services must be integrated into all services that touch
the lives of infants, toddlers, and their families. These may include
child care, Early Head Start, pediatric and family health care, public
health, community mental health, child welfare/social services, home-
visiting, and Part C Early Intervention.
2. Assure earlier identification and intervention of mental health
problems and disorders in infants, toddlers and their parents.
Early identification of risk factors is critical in preventing and
treating mental health disorders in young children. All professionals
who have contact with infants and toddlers, and families should be
aware of early risk factors, how to screen and where to refer for
assessment and intervention. Developmentally appropriate screening and
assessment tools for infants, toddlers, and parents are critical for
the early identification of, planning and delivery of effective
interventions. Screening and assessment of parental mental health,
stress and support systems are equally important in enabling providers
to document the needs of parents. The well-child visit is an important
opportunity for early identification of developmental, emotional, and
behavioral problems. Physicians, time-pressured to provide both medical
care and anticipatory guidance, would be best supported if they had
ready access to screening tools, (including those that could be
completed by parents), practical information about referral
information, and financing strategies.
To encourage developmental and behavioral screening and assessment
for all infants and toddlers, barriers to reimbursement must be
eliminated. Strategies to improve financing include encouraging the use
of appropriate diagnostic procedures and billing codes; expansion of
billing options in Medicaid to allow for treatment of parents and
infants together; maximizing use of Early and Periodic Screening,
Diagnosis, and Treatment Program (EPSDT) and State Children's Health
Insurance Program (SCHIP), and recognizing infant, toddler, and parent
mental health concerns as legitimate treatment issues.
3. Develop system capacity through professional development/
training of service providers.
Neurons to Neighborhoods informs us that, ``Given the substantial
short- and long-term risks that accompany early mental health
impairments, the incapacity of early childhood programs to address
these concerns and the severe shortage of early childhood professionals
with mental health expertise are urgent problems.'' \12\ If we hope to
make a positive difference in the lives of children who are already
affected by mental health disorders, violence, and trauma and promote
healthy social and emotional development we must invest in building a
strong infant mental health workforce.
---------------------------------------------------------------------------
\12\ Shonkoff, J. & Phillips, D. (Eds.) (2000). National Research
Council and Institute of Medicine. From neurons to neighborhoods: The
science of early childhood development. Washington, DC: National
Academy Press.
---------------------------------------------------------------------------
The quality of a service system depends on the individuals that
deliver the services. ``Substantial new investments should be made to
address the nation's seriously inadequate capacity for addressing young
children's mental health needs. Expanded opportunities for professional
training, as recently called for by the Surgeon General, and incentives
for individuals with pertinent expertise to work in settings with young
children are first steps toward more effective screening, early
detection, treatment, and ultimate prevention of serious childhood
mental health problems.'' \13\
---------------------------------------------------------------------------
\13\ Ibid.
---------------------------------------------------------------------------
Greater investments must be made in infant mental health. Both the
community at large as well as parents and the early care and education
providers need to be aware of the importance of early social and
emotional development. In addition, there should be increased support
for training, continuing education, recruitment, and retention of
professionals with special training in infant and early childhood
mental health services.
There are no national data to document shortages in infant mental
health personnel. Anecdotally, based on calls and requests that ZERO TO
THREE receives from States and communities, the need for specialized
training as well as general awareness of social and emotional
development is overwhelming. In a recent survey of unmet needs in the
Illinois early care and education system, 62 percent of programs
reported inadequate mental health resources. Investing in mental health
training yields promising outcomes. In 24 Early Head Start programs
that participated in the ``Pathways to Preventions'' training model,
three critical objectives were achieved: staff knowledge and skills
were extended into programs beyond Early Head Start, program supports
were strengthened, availability of mental health providers were
increased, and staff retention improved.
4. Assure comprehensive mental health services for infants and
toddlers in foster care.
Infants and toddlers in foster care represent a group of children
that are extremely vulnerable. Most have been seriously maltreated;
they exhibit behavior problems such as failure to thrive, tantrums,
self-endangering, aggression, and inability to be consoled. Nearly 80
percent are prenatally exposed to substance abuse, 40 percent are born
prematurely and/or low birth weight, and all of them experience
repeated and often traumatic separation from caregivers, placing them
at risk for future mental health disorders. Infants are the fastest
growing and single largest cohort in foster care. Babies placed in
foster care before 4 months of age remain in foster care longer than
other children.\14\ Over 39,000 infants enter foster care each year.
Infants and toddlers who have suffered physical or sexual abuse,
neglect, and separation from their parents will also suffer emotional
and developmental consequences unless they, and their parents, foster
parents and other primary caregivers, are provided with supportive
mental health interventions.
---------------------------------------------------------------------------
\14\ Wulczyn, F., Harden, B. and Hislop, K. (2002). The placement
of infants in foster care. Infant Mental Health Journal, 23(5), 454-
475.
---------------------------------------------------------------------------
Juvenile and Family Court Judges are responsible for the well-being
of the children in their courts and can be powerful agents of change.
They are uniquely positioned to improve the well-being of infants and
toddlers in the child welfare system and to ensure that they are
receiving the resources and supports they need to address social and
emotional needs. In fact, judges have an opportunity, perhaps the last
one for these most vulnerable infants and toddlers, to focus on healing
in the process of adjudicating the case. \15\
---------------------------------------------------------------------------
\15\ Osofsky, J.D. & Lederman, C.S. (in press). Healing the child
in juvenile court. In J.D. Osofsky (Ed). Young Children and Trauma:
Intervention and Treatment. New York: Guilford, 2004.
---------------------------------------------------------------------------
I have been involved in developing an approach to working with
these young children in the Miami-Dade Juvenile Court. Three years of
data show substantial gains in improving social and emotional
development of infants, toddlers, and their families. In this court,
all infants, toddlers and their mothers receive screening and
assessment services. Babies are screened for developmental delays and
referred for services. A parent-infant psychotherapy intervention is
available to a select number of mothers. An Early Head Start program
connected to the court is the first designed specifically to meet the
needs of maltreated children. Children showed significant improvements
in enthusiasm, persistence, positive affect and a reduction of
depression, anger, withdrawal and irritability.\16\ Of the families
selected to receive the intervention: 58 percent of children improved
in their developmental functioning; \17\ 100 percent of infants were
reunified with their families; \18\ and reports of abuse/neglect were
reduced from 97 percent to 0.\19\
---------------------------------------------------------------------------
\16\ Lederman, C. (2003). Mental health trends in 2003: Miami's
infant and young children's mental health program: A place where the
healing begins. The National Center for State Courts.
\17\ Adams, S., Osofsky, J., Hammer, J., & Graham, M. (2003).
Program Evaluation Florida Infant & Young Child Mental Health Pilot
Project, Year 3, Final Report, Tallahassee, FL: Florida State
University Center for Prevention & Early Intervention Policy.
\18\ Lederman, C. (2003). Mental health trends in 2003: Miami's
infant and young children's mental health program: A place where the
healing begins. The National Center for State Courts.
\19\ Ibid.
---------------------------------------------------------------------------
5. Provide infant/toddler child care programs with access to mental
health consultation and support.
Increasingly, young children are being expelled from child care and
preschool for behavior problems, including biting, tantrums, hitting,
throwing objects, or inconsolable crying.\20\,\21\ A survey
of child care providers in New Hampshire found that 53 percent of
respondents had expelled at least one child, age birth through six.
Young children with behavior problems are difficult to teach, and if
disliked by teachers and peers because of behavior, quickly lose
motivation for learning, withdraw from peers, or face social
rejection.\22\
---------------------------------------------------------------------------
\20\ Wheatley, E. (2001). Child care expulsion survey. Bow, NH: New
Hampshire Association for Infant Mental Health.
\21\ Cutler, A. & Gilkerson, L. (2002). Unmet needs project: A
research, coalition building and policy initiative on the unmet needs
of infants, toddlers and families. Chicago, IL: University of Illinois
at Chicago and Erikson Institute.
\22\ McEvoy, A. & Welker, R. (2000). Antisocial behavior, academic
failure and school climate: A critical review. Journal of Emotional and
Behavioral Disorders, 8(3), 130-140.
---------------------------------------------------------------------------
An estimated 7 million babies and toddlers (nearly 65 percent of
all children under age 3) spend time in non-parental care each day.
\23\ Good child care can be an excellent early learning environment
where healthy social and emotional development can be promoted for all
children. With mental health consultation and training, staff can
support and promote social and emotional development, prevent
behavioral problems, and identify early warning signs of mental health
disorders.
---------------------------------------------------------------------------
\23\ Oser, C. & Cohen, J. (2002). America's Babies: The ZERO TO
THREE Policy Center Data Book. Washington, DC: Zero to Three Press.
---------------------------------------------------------------------------
A Kentucky study demonstrated success of mental health consultation
in child care. Of the approximately 400 children served through June
2003, 88 were identified as being at-risk for such discharge. Of these,
only 8 lost their placement due to behavior problems, while 80 had been
successfully maintained in these programs.
6. Support and advance evidence-based practices in infant and early
childhood mental health through the establishment of a national infant
mental health resource center.
Parents and professionals are hungry for information about social
emotional development. There is new research available and some
promising models for addressing infant mental health, but providers are
largely unaware of this information. One way to improve the mental
health outcomes for young children is by creating a national resource
center for infant mental health. Such a center would:
Provide information, technical assistance, training and
other resources about social-emotional development in infants and
toddlers with disabilities to early intervention personnel and parents.
Identify and disseminate infant mental health models.
Translate current research about effective infant mental
health intervention and treatment approaches for parents and early
intervention professionals.
Develop materials screening and assessment tools, how to
integrate mental health goals into Part C Individualized Family Service
Plans, and infusing relationship-based approaches into Part C practice.
Coordinate with other mental health initiatives such as
those through the Early Head Start National Resource Center to assure a
systematic approach across birth to three programs.
Many States are in the process of developing strategic plans for
early childhood mental health services, developing financing
strategies, etc. This is an opportune time to identify and disseminate
promising evidence-based practices, and translate what is known from
the science of early childhood education into what we do for infants,
toddlers and families.
In conclusion, Mr. Chairman, existing Federal, State, and community
programs for young children should be used as foundations to expand and
improve infant mental health services. Although research is clear in
demonstrating the importance of healthy social and emotional
development at the earliest stages in life in assuring school readiness
and developing healthy relationships later in life, we have not
translated this knowledge into what we do for babies and toddlers. If
we truly desire children to be ready to learn, much less to grow up to
be healthy adults, we need to make a concerted effort to address the
critical mental health needs of our youngest children and their
families.
Response to Questions of Senator Reed From Joy Osofsky
Question 1. Is there evidence of improved outcomes, better
compliance, and cost savings through providing combined services? For
example, properly treating an alcoholic's bipolar illness to avoid
relapsing on alcohol.
Answer 1. Unfortunately, many juvenile facilities have inadequate
mental health services and limited programs to help change behaviors
and provide rehabilitation for incarcerated juveniles. Incidences of
recidivism are high. Most show antisocial behaviors entering the prison
and many more show antisocial traits and mental health symptoms while
in prison related to the harsh treatment and experiences while they are
in the facility. Most juvenile facilities are understaffed with mental
health professionals and do not have good individual and group services
to meet the mental health needs of the youth. To address this issue, it
can be helpful for correctional facilities to link with universities,
medical schools, community programs, and other settings that may be
able to provide services and help to develop more positive programs for
the youth.
Question 2. Are different Federal funding streams a barrier to
quality mental health care?
Answer 2. Barriers when they transition out of juvenile facilities
include: (1) Traditional case management services that are often
inadequate to help youth with the transition; and (2) few good
community programs to help develop skills and support them when they
return to their home communities.
What judges can do to help this situation:
(1) Judges can help to develop collaborations where youth and their
families can participate in prevention and intervention programs in
their communities to prevent their being incarcerated.
(2) Judges can work together with mental health professionals and
school systems to try to develop diversionary programs for first time
offenders who have not committed violent crimes in order to provide
intervention and, hopefully, prevention in their communities.
(3) Judges can play an active role in monitoring the treatment of
juveniles in facilities by periodic review.
(4) Judges can play a key role with youth being returned to the
community in establishing and monitoring community programs to prevent
recidivism.
(5) Judges need more education about mental health issues in
juveniles and effective programs and interventions.
Senator DeWine. Ms. Wong?
Ms. Wong. Good morning, Mr. Chairman and Members of the
Subcommittee. I am Marleen Wong, and for the past 30 years, I
have worked in School Mental Health Services, District Crisis
Teams, and the Suicide Prevention Unit of the Los Angeles
Unified School District. For 8 of those years, I was the
director.
I have been asked today to comment on the state of school
mental health services and the priorities that our country
might establish in response to the recommendations of the
President's New Freedom Commission on Mental Health,
particularly the recommendation that school-based mental health
services be expanded and enhanced. I temper my ``Director of
School Mental Health'' remarks with my personal experience as a
mother of two children, a school social worker, a former school
board member, a past member of the local teachers union, a
current member of the local administrators union, the director
of the school unit for the National Center for Child Traumatic
Stress, a current member of the Institute of Medicine Board of
Neuroscience and Behavioral Health, and a consumer of mental
health services.
What is the scope of the problem for our school children
who need mental health services? The 1999 Surgeon General's
Report on Mental Health reported that in any given year about
20 percent of children have a mental disorder requiring the
attention of a mental health professional. And yet a recent
Rand study notes that only 8 percent of children who need
mental health care actually receive services. This leaves 92
percent of our children who need are without any services. Of
the 8 percent who do receive services, 85 percent of the
children receive them in school mental health programs, making
schools the de facto primary source of mental health services
for children K-12 in this country.
Currently in the United States, there are about 15,000
school districts and approximately 100,000 schools. During a
regular school week, 70 percent of the total population of
children kindergarten through 12th grade in public and private
schools are in attendance.
If we are to transform our mental health care system, we
must establish a true system of care for all children, not just
those with persistent and chronic mental illness. We must
include children at every age and stage, those at risk for
serious disorders, children caught in family or community
crises, and disabled children. All aspects of children's lives
are in a fluid state of development. early intervention and
disability prevention means a shift in thinking to a ``well
child'' mental health system, one that is adequately resourced
for each of the components of early identification, early
intervention, prevention, and effective treatments. One aspect
of care should not be sacrificed for another because of funding
disparities. One child should not be left behind because of
another's needs.
School mental health services must be supported with
adequately quality assurance and accountability measures. Most
importantly, in measuring our success, mental health
professionals must find a way to integrate the mission of
mental health with the mission of education. Outcomes must not
only include a decrease of symptoms but evidence of improved
academic functioning--support for better grades, improved
classroom behavior, fewer absences, and increased attendance,
less dropout. These criteria are generally not within the realm
of traditional treatment outcome. However, they are solid
indices of health, rehabilitation, and recovery for children.
I would also like to speak about the Individuals with
Disabilities Education Improvement Act, a critically important
piece of legislation that helps to support children who are
disabled. I would especially like to thank the committee for
recognizing the disabling effects that trauma exposure can have
for young children and for the inclusion of language in the
bill that can help children who struggle in school as a result
of trauma and the effects of traumatic events.
Fragmentation of funding, programs, and personnel is a
growing problem for school mental health. They suffer from
service and funding fragmentation. I am proud to say that the
Los Angeles Unified School District has supported mental health
services for the past 71 years. However, in the 30 years that I
have worked in the school district, we have had to fight to
maintain those services during annual budget deliberations when
categorical, special education, Title I, and general fund
dollars wax and wane.
Finally, I would like to share a personal story, one that
shows how far we have come. My involvement in this work goes to
an earlier generation. From the time that I was 6 years old, my
grandmother told me stories about her early life in San
Francisco. That beautiful city was part of the Wild West in the
early 1900s. For Chinese immigrants, it was a vibrant and
dangerous place.
My grandmother, Ruth, was 5 years old when she was sold by
her impoverished mother to a Chinese family emigrating to
America. As a child, she remembered the day her mother pushed
her toward a woman she had never seen and said, ``This woman
will be like your mother now.'' As a young child, she crossed
an ocean with strangers to confront violence in the new world
of San Francisco Chinatown.
Once she saw a group of men refuse to pay the bill for
their dinner and many bottles of liquor. And when the owner of
the restaurant insisted upon payment, they drew guns and
destroyed the place. My grandmother, Ruth, hid in a corner,
unharmed but traumatized. And in the following weeks, she
refused to leave her home. She feared that she would be killed
and that the violence would happen again.
Not long after that incident, the violence did happen
again. And the head of her new family was shot and killed as an
innocent victim during a gang shooting. My grandmother never
completed elementary school.
In 1905, there was no counseling available in schools, nor
was there any recognition of the paralyzing effects of violence
on children. The year my grandmother died, in 1999, I began my
association with Rand and UCLA to test our trauma intervention
for its effectiveness with children in schools. And the results
can be read in the Journal of the American Medical Association
in the August 2003 issue.
We have come a long way in our country in recognizing the
need for such services to children, and yet we have so much
more to do.
The mission of schools is to educate. The mission of mental
health services is to heal. And our responsibility is to the
child who will benefit from both. The reality is that the
mission of one cannot proceed without the success of the other.
So I thank you, Mr. Chairman and Senator Reed and Mr.
Kennedy and members of the committee, for the opportunity to be
here, to present this information, and to express the gratitude
of those who work in schools. Your work is vitally important to
the creation of a children's mental health system that truly
cares for children.
Thank you.
Senator DeWine. Ms. Wong, that is a very compelling story.
Thank you very much.
[The prepared statement of Ms. Wong follows:]
Prepared Statement of Marleen Wong, LCSW
Good morning Mr. Chairman and Members of the Subcommittee. I am
Marleen Wong, Director of Crisis Counseling and Intervention Services
for the Los Angeles Unified School District, and Director of the School
Crisis and Intervention Unit for the National Center for Child
Traumatic Stress (NCCTS) at UCLA and Duke University. For the past 30
years, I have worked in School Mental Health Services, District Crisis
Teams and the Suicide Prevention Unit of the Los Angeles Unified School
District. For 8 years, I was the Director of those services.
The Los Angeles Unified School District, (LAUSD) is the second
largest school district in the United States with a population of
738,000 students K-12 and over 80,000 employees, over half of them
teachers. The School Mental Health Service was established in LAUSD in
1933 to assist special education students with social and emotional
consequences of serious health conditions or physically handicapping
challenges. During my tenure as Director, from 1993 to 2001, school
mental health services grew from 25 to 200 staff members of child
psychiatrists, clinical psychologists and social workers in outpatient
clinics and schools.
In 2001, I was appointed the Director of Crisis Counseling and
Intervention Services in LAUSD. My responsibility is to train and
oversee district level crisis teams comprised of 250 school counselors,
nurses, social workers, school psychologists, school police, and
attendance counselors. Crisis teams are required at every school site.
Eleven district crisis teams support and enhance site teams during
incidents that overwhelm the resources of a school.
As a school social worker, I have worked with children representing
every community of our diverse district and responded to hundreds of
crisis events involving the injury or death of students or staff.
Twenty years ago, at the 49th Street Elementary School, a man who lived
in the second floor apartment across the street from the school, opened
fire with multiple weapons as our students were dismissed for the day.
He held the school under sniper fire for an hour and a half, killing a
9-year-old girl and wounding several other students and staff. That
tragedy prompted the development of the first formal policies and
procedures in LAUSD, initiating our current system of crisis response,
i.e., the formation of a crisis intervention team at every school and a
district level team to support the school response.
Two large scale disasters in Los Angeles, the Los Angeles riots and
fires and the Northridge earthquake, required a larger crisis response
and recovery programs. Our district worked closely with the Los Angeles
County Department of Mental Health, receiving several FEMA Crisis
Counseling Grants to reach out to our students and encourage their
return to school. After the riots, human relationships had to be
mended. After the earthquake and the hundreds of powerful aftershocks,
parents sought out school mental health services for their children.
Many of our children were afraid to return to school, suffering from
traumatic stress and depression due to the complex interactions of
fear, ruined homes, multiple residential relocations, and family
conflict.
In 2001, I was asked to join the National Center for Child
Traumatic Stress (NCCTS), a national program initiated by Congress and
funded by the Substance Abuse and Mental Health Services Administration
(SAMHSA). The NCCTS oversees the National Child Traumatic Stress
Network (NCTSN), a mental health network of 54 university, hospital,
and community programs dedicated to raising the standard of care and
improving access to services for traumatized children, their families
and communities across the United States. My work as the Director of
School Crisis and Intervention for the National Center, builds on my
focused view of local needs and the problems of organizing and
sustaining a school mental health program within a local education
agency. It enables me to have a broader national perspective of the
range of the needs and challenges confronted by community agencies and
school districts who wish to establish school mental health services in
rural, suburban and urban environments.
I have been asked today to comment on the state of school mental
health services and the priorities that our country might establish in
response to the recommendations of the President's New Freedom
Commission on Mental Health, particularly the recommendation that
school-based mental health services be expanded and enhanced. I temper
my ``Director of School Mental Health'' remarks with my personal
experience as a mother of two children, a school social worker, a
former school board member, a past member of the local teachers' union,
a current member of the local administrators' union, a current member
of the Institute of Medicine (IOM) Board of Neuroscience and Behavioral
Health, and a consumer of mental health services.
Demographic Information About Children, Schools and School Mental
Health Services
What is the scope of the problem for our school children who need
mental health services?
The 1999 Surgeon General's Report on Mental Health reported that in
any given year, about 20 percent of children have a mental disorder
requiring the attention of a mental health professional. In 2002,
SAMHSA's National Survey on Drug Use and Health reported that an
estimated 5 to 9 percent of children and youth have a serious emotional
disturbance in any 1 year.
And yet, a 1995 RAND study notes that only 8 percent of children
who need mental health care actually receive services--this leaves 92
percent of our children who need care without any services. Of the 8
percent who do receive services, 85 percent of the children receive
them in school mental health programs. Community agencies,
pediatricians, public mental health services agencies, even
correctional facilities, have a role to play in providing care, but the
reality is that schools have become the de facto primary source of
mental health services for children.
The Goals and Recommendations of the President's New Freedom Commission
on Mental Health
I would like to discuss school mental health services within the
context of the goals and the recommendations of the President's New
Freedom Commission on Mental Health.
The Commission has recommended that we:
Place consumers and their families at the center of
service decisions.
Currently in the United States, there are about 15,000 School
Districts and approximately 100,000 Schools. During a regular school
week, 70 percent of the total population of children Kindergarten
through 12th grade are in attendance at one of these schools. If we add
to this large number, the parents, siblings and families of the
students, and the families of teachers, administrators and other school
personnel, over 50 percent of the total United States population is
connected during the work week to a school somewhere in this country.
Schools are natural sites of service for children and families.
The Commission has recommended that we:
Reduce disparities and the burden of unmet needs and lack
of access to services among minority groups.
and
Develop a model that emphasizes early intervention and
disability prevention.
If we are to transform our mental health care system, we must
establish a true system of care for all children, not just those with
persistent and chronic mental illness. We must include children at
every age and stage, those at risk for serious disorders, children
caught in family or community crises, and disabled children. All
aspects of children's lives are in a fluid state of development. Early
intervention and disability prevention means a shift in thinking to a
``well child'' mental health system, one that is adequately resourced
for each of the components of early identification, early intervention,
prevention, and effective treatments. One aspect of care should not be
sacrificed for another because of funding disparities. One child should
not be left behind because of another's needs.
School personnel are intimately aware of the social, psychological,
and academic toll that mental health disorders, traumatic experiences,
and mental illness can take on our children and adolescents. Early
identification and intervention can make a difference at any grade.
Children may not do well in preschool because their experience of
domestic violence has interfered with their brain development, capacity
to learn, and behavior. Elementary school children exposed to trauma
and violence can lead to poor sleep and poor learning, compromising
their acquisition of basic educational skills. A child who has done
well in elementary school may be bullied in middle school or exposed to
violence in the community, and go on to develop symptoms of
posttraumatic stress that disturb academic performance, classroom
behavior, and school attendance. A student in high school may suffer a
traumatic loss because of the death of a close friend through a traffic
accident, catastrophic school violence, or suicide, and become
seriously depressed.
Middle school and high school students often respond to experiences
of trauma and loss by abusing alcohol or drugs or by engaging in
reckless or high-risk sexual behaviors. They may also struggle with
thoughts of suicide.
Schools are the place where the loss of motivation for learning of
such students can be noted as a symptom of depression or trauma, and
can best be addressed through school mental health programs.
In our crisis intervention work in the Los Angeles Unified School
District and in many other parts of the country, we have worked with
children in a post-crisis school setting. Often, while working with
their trauma, we discovered children with other mental health problems
that had never been addressed. Unfortunately, schools are limited by
the lack of personnel to adequately provide intermediate and long term
mental health and case management services that children need.
Our crisis intervention work showed that most students suffer
silently from trauma or depression, spending their school days ``hidden
in plain sight''. Schools routinely screen for vision and for hearing,
two conditions which we would all agree are crucial to learning. Just
as crucial may be school screening for trauma and depression, where
fear, disturbing thoughts, feelings and images become barriers to
school attendance and classroom participation.
The Commission has recommended that we:
Establish ``evidence-based practices'' as the bedrock of
service delivery.
We can do this by supporting ongoing practical research that is
embedded in schools and communities, and by providing training linked
to scientific findings and clinical experience. This is one of the
central goals of the National Child Traumatic Stress Network.
The Commission has recommended that we:
Improve quality and accountability:
Establishing school based mental health services is not a panacea.
Services must be supported with adequate quality assurance and
accountability measures. An example of such requisite oversight is that
44 percent of the students who seek help at school-based health clinics
present with mental health disorders or problems. Of the students who
seek help for depression, few receive evidence-based treatments. The
average number of three to four visits suggests that few ever receive
the full ``dose'' of recommended treatment, and follow up is rarely
done.
Some disorders, such as psychological trauma and depression, are
very amenable to identification and treatment within a school setting.
These are also the disorders that are being identified as leading
causes of disability among the general population of children in the
United States. Our work in LAUSD with RAND and UCLA Health Sciences
Research Center, documented disrupted academic performance, negative
classroom behavior and less school attendance among students
traumatized by their exposure to community violence. In fact,
scientific studies are showing that childhood trauma further affects
the onset and course of many other child and adolescent health and
mental health conditions, from attention deficit and bipolar disorder
to substance abuse and conduct disorder.
Most importantly, in measuring our success, mental health
professionals must find a way to integrate the mission of mental health
and the mission of education. From an organizational perspective,
mental health services in schools cannot operate outside the structure
and organization of the educational environment. In order to succeed
within the educational environment and to gain acceptance from
educators, the integrity of the academic day must be preserved.
Outcomes must include not only a decrease of symptoms but also evidence
of improved academic functioning--better grades, improved classroom
behavior, fewer absences, and increased attendance. These criteria are
generally not within the realm of traditional treatment outcomes.
However, they are solid indices of health, rehabilitation, and recovery
for children.
IDEA
I would also like to speak about the Individuals with Disabilities
Education Improvement Act, a critically important piece of legislation
that helps to support services for children who are disabled. Although
IDEA has not yet been enacted, I would like to commend the committee
for the progress it has made in the Senate. I want to affirm that
school children with disabilities need the help that can be provided
through this bill, and they need it now. I would especially like to
thank the committee for recognizing the disabling effects that trauma
exposure can have for young children, and for the inclusion of language
in the bill that will help children who struggle in school as a result
of trauma and the effects of traumatic events.
A report on developmental disabilities and trauma was developed by
the NCTSN, and has been submitted for the record. That report includes
information from population studies showing that the national
prevalence rate for developmental disabilities in the United States is
1.8 percent. This translates into many children in our school systems
needing the specialized education provided through IDEA. Additional
studies have shown that individuals with developmental disabilities are
at increased risk for abuse as compared to the general population. For
example, 64 percent of maltreated children have a disability, such as
behavioral disorders; speech, language, or learning disabilities; or
mental retardation. Children with mental retardation were the most
severely abused. When we identify a child with special needs, it is
essential to determine the full context of the child's life and history
so that the most appropriate services can be provided.
It is therefore a major step forward for the Senate to recognize
that the development of vulnerable young children can be thrown off
course because of traumatic experiences, and that, with timely
intervention, a child's life can be supported back onto a normal
developmental path.
Obstacles to Mental Health Services Access
In establishing the New Freedom Commission on Mental Health,
President Bush noted three key obstacles that keep people with mental
illnesses from getting the services they 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.
Lack of Parity
In our society, and in our health care system, children with mental
disorders face the same stigma and discrimination as adults. It is
unfair that an illness that can affect the brain, emotions,
intellectual development and capacity, and relationships, and can so
tragically affect the development of a child, is treated as less than
serious, less than real. Schools can only do so much. When children are
referred for mental health care, even those whose families have private
insurance often cannot get medically necessary care because of the lack
of parity in mental health coverage. This situation is worse than
unfair . . . it can be lethal. Efforts to enact Federal mental health
parity legislation have been close to success many times, and even now,
parity has the widespread support of the Senate, the House, the
President, and over 360 national organizations. Yet, American families
are still waiting. It is the hope of all of us who work with children
and their families that a full and fair mental health parity bill will
be finally enacted in this Congress.
Overcoming Stigma Through School Mental Health Programs
In Los Angeles, we have completed 4 years of trauma work with
students who have been exposed to community violence. Through concerted
effort, our program of mental health services has overcome much of the
stigma that often surrounds such programs. Perhaps the greater
acceptance of our mental health services is that we approach problems
as developmental challenges and tasks, providing education, case
management and support to parents; making consultation available to
teachers; and providing treatment to children so that they can succeed
in school. In the initial cohort of 20 LAUSD schools receiving special
trauma intervention, only 3 percent to 5 percent of parents declined
mental health services for their children.
Our intervention was tested in randomized clinical trials and the
results were published as an ``original contribution'' in the August
2003 Journal of the American Medical Association. A screening of
thousands of children in LAUSD over the past 4 years found that 90
percent of students in some neighborhoods had been exposed to multiple
incidents of violence, as witnesses and victims and that 27 percent of
them had clinical levels of PTSD and 16 percent of them had clinical
levels of depression. After 10 sessions of CBITS, the majority of
children significantly decreased their symptoms of PTSD and Depression
to the extent that they could no longer be diagnosed as traumatized or
depressed. In the evaluation of an early group of students, there was a
significant increase in grade point average as compared not only to
students who had not yet received the intervention, but also as
compared to students who had tested negative for either of the
disorders.
More importantly, after students completed the Cognitive Behavioral
Intervention for Trauma in Schools (CBITS), over 92 percent of the
parents understood that exposure to community violence had created
serious psychological and academic problems in their children's lives.
Eighty-five percent of the parents were pleased with the outcomes of
treatment and 76 percent wanted to refer another family member or
friend to receive services.
Fragmentation of Funding, Programs, and Personnel
Like public mental health systems, school mental health programs
also suffer from service and funding fragmentation. I am proud to say
that the Los Angeles Unified School District has supported mental
health services for the past 71 years. However, in the 30 years that I
have worked in LAUSD, we have had to fight to maintain those services
during annual budget deliberations when categorical, special education,
Title I and general fund dollars wax and wane. This year, many mental
health professionals, such as school counselors and social workers,
will lose their jobs because of severe budget cuts necessitated by the
downturn in the economy.
In 1992, I worked with our Los Angeles County Department of Mental
Health Services to negotiate the first Medi-Cal (Medic-Aid) contract
between a school district and a county mental health service. We are
currently able to draw down ``rehabilitation'' reimbursements for
services to Medi-Cal eligible students and their families.
This funding stream, however, does not provide any financial
support for the work we do with indigent, uninsured children and
families. Over 73 percent of LAUSD students and their families live
below the poverty level and receive free and reduced lunch. The budget
crisis in California has been so severe that there is no longer public
mental health funding available for indigent, uninsured children, the
largest socioeconomic group of students within our school district.
Further hampering the foundation of economic support, reimbursement
dollars for school mental health services are often absorbed by the
larger district budget to offset losses in other areas. Locally,
reimbursements ``earned'' through these programs and others, such as
designated instructional counseling mandated by the Individual
Education Plan (IEP) for special education students, or Local Education
Agency (LEA) Medic-Aid, are not necessarily returned to support the
programs that provided the services.
What is needed are multiple sources of funding earmarked for school
mental health services that is protected within State, Federal and
local education budgets to establish and sustain programs that serve
children's needs.
The NCTSN: The National Child Traumatic Stress Network and the National
Center for Child Traumatic Stress (NCCTS)
In my work with the National Center for Child Traumatic Stress, and
the 54 affiliated sites that form the larger National Child Traumatic
Stress Network, we are enacting one of the basic principles in delivery
of services to children--to make services available to the children
where they are, in schools and other community settings where they live
their lives. This is why our network is helping to bring trauma-
informed services to children in schools, residential treatment
centers, child welfare systems, correctional facilities, rural clinics,
domestic violence shelters, community-based programs, refugee services,
and many more. Our goal is to raise the standard of care for
traumatized children by developing and delivering evidence-based
treatment and services in a timely and effective way.
In my role as Director of the School Crisis and Intervention Unit
of the National Child Traumatic Stress Network, I can attest to the
increasing acceptance of school-based mental health services by
families and school communities. These services are critical to meeting
our nation's mission of promoting academic excellence, good citizenship
and the well-being of our children.
Children and adolescents in our schools feel comfortable asking for
these services, courageously commit to the hard work involved in
treatment, and even refer their friends. Parents and guardians have
told us that they are very pleased that the services are being offered.
Teachers have seen the results in their classrooms, and have
enthusiastically expressed their support. Integrating mental health
services in schools can be successful with sufficient support.
Historical Roots: The Story of Ruth
My involvement in this work goes back many generations. From the
time I was 6 years old, my grandmother told me stories about her early
life in San Francisco. That beautiful city was part of the Wild West in
the early 1900's. For Chinese immigrants it was a vibrant and dangerous
place. The residents of Chinatown were vulnerable to violence from
Chinese gangs who victimized businesses, from Tong warfare (kinship and
clan organizations fighting for economic, social and political
dominance), and from white Americans who viewed the Chinese as less
than human.
The process of immigration from Macao, the island of my
grandmother's birth, to San Francisco was no less dangerous. Pirates
and thieves preyed on children and adults who boarded boats to escape
the effects of the Boxer Rebellion in South China. They fled to find
their way to ``Gold Mountain'', the name given to California and the
promises it held for a better life.
My grandmother, Ruth, was 5 years old when she was sold by her
impoverished mother to a wealthy Chinese family emigrating to America.
As a child, she remembered the day her mother pushed her toward a woman
she had never seen before and said, ``This woman will be like your
mother now.'' As a young child, she crossed an ocean with strangers to
confront violence in the new world of San Francisco Chinatown.
Once she saw a group of men refuse to pay the bill for their dinner
and many bottles of liquor. When the owner of the Chinese restaurant
insisted upon payment, they drew guns and shot bullets into the walls,
ceiling and floors, smashing the furniture and laughing as they left.
Ruth hid in a corner, unharmed but traumatized. In the following weeks,
she refused to leave her home. She feared that she would be killed and
that the violence would happen again.
Not long after that incident, the violence did happen again. The
head of her new family was shot and killed as an innocent bystander
during a gang shooting. My grandmother never completed elementary
school.
In 1905, there was no counseling available in schools, nor was
there recognition of the paralyzing effects of violence on children.
The year my grandmother died, in 1999, I began my association with RAND
and UCLA Research to test our intervention for its effectiveness in
schools.
The scars of violence can last a lifetime, but with early
identification and early intervention in schools, the distress,
anxiety, depression and trauma can be lifted and healed and children
can be helped to resume productive and successful social, emotional and
academic lives.
We have come a long way in our country in recognizing the need for
such services to children, and yet we do have so much more to do. The
children are waiting.
In Closing
The mission of schools is to educate. The mission of mental health
services is to heal. Our responsibility is to the child who will
benefit from both. The reality is that the mission of one cannot
proceed without the success of the other.
I thank you, Mr. Chairman, Mr. Kennedy, and Members of the
Subcommittee, for the opportunity to be here, to present this
information to the subcommittee, and to express the gratitude of those
of who work in the schools. Your work is vitally important to the
creation of a children's mental health system that truly cares for
children.
Response to Questions of Senator Bingaman From Marleen Wong
Question 1. Every year, an estimated 9 percent to 13 percent of
children and adolescents in the United States experience a clinically
significant mental disorder that warrants treatment. Yet, according to
the Surgeon General's Report on Mental Health, two-thirds of these
vulnerable young people do not receive any mental health treatment at
all. What can we do to improve access to treatment?
Answer 1. In establishing the New Freedom Commission on Mental
Health, President Bush noted three key obstacles that keep people with
mental illnesses from getting the services they 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.
If we are to transform our mental health care system, we must
establish a true system of care for all children, not just those with
persistent and chronic mental illness. We must include children at
every age and stage, those at risk for serious disorders, children
caught in family or community crises, and disabled children. All
aspects of children's lives are in a fluid state of development. Early
intervention and disability prevention means a shift in thinking to a
``well child'' mental health system, one that is adequately resourced
for each of the components of early identification, early intervention,
prevention, and effective treatments. One aspect of care should not be
sacrificed for another because of funding disparities. One child should
not be left behind because of another's needs.
Lack of access to treatment is the result of many failures in the
health care system. One way that access to mental health treatment
would be improved is through the funding of preventive programs and
early intervention mental health services in schools. The Early
Periodic Screening, Diagnosis and Treatment (EPSDT) programs were meant
to serve this purpose but have never been instituted or sufficiently
funded to operate effectively in schools. Unlike community mental
health clinics, hospitals or doctor's offices, schools are natural
settings for children and parents. School mental health programs have
demonstrated that children and families accept such services with less
stigma and are more likely to complete the course of treatment.
Community agencies, pediatricians, public mental health services
agencies, even correctional facilities, have a role to play in
providing care, but the reality is that schools have become the de
facto primary source of mental health services for children. A 1995
RAND study noted that only 8 percent of children who need mental health
care actually received services--this leaves 92 percent of our children
who need care without any services. Of the 8 percent who did receive
services, 85 percent of the children received them in school mental
health programs.
In our crisis intervention work in the Los Angeles Unified School
District and in many other parts of the country, we have worked with
children in a post-crisis school setting. Often, while working with
their trauma, we discovered children with other mental health problems
that had never been addressed. Unfortunately, schools are limited by
the lack of personnel to adequately provide intermediate and long term
mental health and case management services that children need.
To improve access, we need to address the barriers to treatment on
several fronts. One approach is greater detection through improved
education of professionals who work with children such as teachers,
pediatricians, DCFS workers, and probation counselors, a principle
supported in proposed S. 1223. Community leaders, including school
superintendents, principals, union officials and faith leaders must
also be included in an educational campaign to ensure that their
decisions about children's programs are informed by scientific
knowledge. Developing cultural competency in addition to high quality,
and effective services, also noted in S. 1223, are crucial to this
goal. National education and media campaigns about children's mental
health should address this problem in multiple communities. One of the
issues pertinent to access and disparity are the racial and ethnic
differences among groups which include stereotypes that prevent
appropriate treatment from being provided, language and cultural
barriers, and lack of resources in disadvantaged communities. The work
of Drs. Sheryl Kataoka and Ken Wells, UCLA Health Services Research
Center, has elucidated these issues in details.
Making mental health screening in schools routine for easily
treatable problems, such as traumatic stress and depression will
identify unmet needs and improve access to care. Our crisis
intervention work showed that most students suffer silently from trauma
or depression, spending their school days ``hidden in plain sight''.
Schools routinely screen for vision and for hearing, two conditions
which we would all agree are crucial to learning. Just as crucial may
be school screening for trauma and depression, where fear, disturbing
thoughts, feelings and images become barriers to school attendance and
classroom participation. Schools are the place where the loss of
motivation for learning of such students can be noted as a symptom of
depression or trauma, and can best be addressed through school mental
health programs.
In our society, and in our health care system, children with mental
disorders face the same stigma and discrimination as adults. It is
unfair that an illness that can affect the brain, emotions,
intellectual development and capacity, and relationships, and can so
tragically affect the development of a child, is treated as less than
serious, less than real. Schools can only do so much. When children are
referred for mental health care, even those whose families have private
insurance often cannot get medically necessary care because of the lack
of parity in mental health coverage. This situation is worse than
unfair . . . it can be lethal. Efforts to enact Federal mental health
parity legislation have been close to success many times, and even now,
parity has the widespread support of the Senate, the House, the
President, and over 360 national organizations. Yet, American families
are still waiting. It is the hope of all of us who work with children
and their families that a full and fair mental health parity bill will
be finally enacted in this Congress.
Question 2. Evidence-based treatments are now available for the
full range of child and adolescent mental disorders. Yet these
effective treatments fail to reach a majority of those who can benefit
from them. How can we close the gap between research and real-world
practice to ensure that evidence-based treatments are available in
community service settings?
Answer 2. Closing the gap between research and practice begins in
graduate training programs. S. 1223 supports the concept that teaching
evidence based treatments begins in graduate programs of psychiatry,
psychology, school psychology, psychiatric nursing, social work, school
social work, marriage and family therapy, school counseling, and
professional counseling. Support for continuing education through loan
repayments, scholarships, and grants that increase the number of mental
health providers expert in child and adolescent mental disorders will
facilitate the infusion of sufficient numbers of providers in all child
settings and enhance the quality of evidence-based services for
children.
In my work with the National Center for Child Traumatic Stress, and
the 54 affiliated sites that form the larger National Child Traumatic
Stress Network, we are enacting one of the basic principles in delivery
of services to children--to make services available to the children
where they are, in schools and other community settings where they live
their lives. This is why our network is helping to bring trauma-
informed services to children in schools, residential treatment
centers, child welfare systems, correctional facilities, rural clinics,
domestic violence shelters, community-based programs, refugee services,
and many more. Our goal is to raise the standard of care for
traumatized children by developing and delivering evidence-based
treatment and services in a timely and effective way. And we are doing
this by directly linking the researchers and the providers in ongoing
collaborations to improve care based on research and clinical practice.
The New Freedom Commission stated that ``evidence-based practices''
are the bedrock of service delivery and that we improve quality and
accountability. We can support this effort by supporting ongoing
practical research that is embedded in schools and communities, and by
providing training linked to scientific findings and clinical
experience. This is one of the central goals of the National Child
Traumatic Stress Network.
Establishing school based mental health services is not a panacea.
Services must be supported with adequate quality assurance and
accountability measures. An example of such requisite oversight is that
44 percent of the students who seek help at school-based health clinics
present with mental health disorders or problems. Of the students who
seek help for depression, few receive evidence-based treatments. The
average number of 3 to 4 visits suggests that few ever receive the full
``dose'' of recommended treatment, and follow up is rarely done.
Some disorders, such as psychological trauma and depression, are
very amenable to identification and treatment within a school setting.
These are also the disorders that are being identified as leading
causes of disability among the general population of children in the
United States. Our work in LAUSD with RAND and UCLA Health Sciences
Research Center, documented disrupted academic performance, negative
classroom behavior and less school attendance among students
traumatized by their exposure to community violence. In fact,
scientific studies are showing that childhood trauma further affects
the onset and course of many other child and adolescent health and
mental health conditions, from attention deficit and bipolar disorder
to substance abuse and conduct disorder.
Most importantly, in measuring our success, mental health
professionals must find a way to integrate the mission of mental health
and the mission of education. From an organizational perspective,
mental health services in schools cannot operate outside the structure
and organization of the educational environment. In order to succeed
within the educational environment and to gain acceptance from
educators, the integrity of the academic day must be preserved.
Outcomes must include not only a decrease of symptoms but also evidence
of improved academic functioning--better grades, improved classroom
behavior, fewer absences, and increased attendance. These criteria are
generally not within the realm of traditional treatment outcomes.
However, they are solid indices of health, rehabilitation, and recovery
for children.
Question 3. Children with serious emotional disturbance often have
multiple problems and require services from several systems, including
the mental health, educational, child welfare, and juvenile justice
systems. How can we enhance the coordination and collaboration of
various child-serving systems?
Answer 3. What is needed are multiple sources of funding earmarked
for mental health services that are protected within State, Federal and
local education budgets to establish and sustain programs that serve
children's needs. Coordination and collaboration of various child
servicing systems can be enhanced by placing those services at one
location within an area or geographic region. In addition, a multi-
disciplinary collaborative team approach to serving each child would
enhance and promote ``wrap-around'' services, tailoring the services to
the changing needs of the child.
Many public mental health systems suffer from service and funding
fragmentation. I am proud to say that the Los Angeles Unified School
District has supported mental health services for the past 71 years.
However, in the 30 years that I have worked in LAUSD, we have had to
fight to maintain those services during annual budget deliberations
when categorical, special education, Title I and general fund dollars
wax and wane. This year, many mental health professionals, such as
school counselors and social workers, will lose their jobs because of
severe budget cuts necessitated by the downturn in the economy.
In 1992, I worked with our Los Angeles County Department of Mental
Health Services to negotiate the first Medi-Cal (Medic-Aid) contract
between a school district and a county mental health service. We are
currently able to draw down ``rehabilitation'' reimbursements for
services to Medi-Cal eligible students and their families.
This funding stream, however, does not provide any financial
support for the work we do with indigent, uninsured children and
families. Over 73 percent of LAUSD students and their families live
below the poverty level and receive free and reduced lunch. The budget
crisis in California has been so severe that there is no longer public
mental health funding available for indigent, uninsured children, the
largest socioeconomic group of students within our school district.
Further hampering the foundation of economic support, reimbursement
dollars for school mental health services are often absorbed by the
larger district budget to offset losses in other areas. Locally,
reimbursements ``earned'' through these programs and others, such as
designated instructional counseling mandated by the Individual
Education Plan (IEP) for special education students, or Local Education
Agency (LEA) Medic-Aid, are not necessarily returned to support the
programs that provided the services.
In my work with the National Center for Child Traumatic Stress, and
the 54 affiliated sites that form the larger National Child Traumatic
Stress Network, we are enacting one of the basic principles in delivery
of services to children--to make services available to the children
where they are, in schools and other community settings where they live
their lives. This is why our network is helping to bring trauma-
informed services to children in schools, residential treatment
centers, child welfare systems, correctional facilities, rural clinics,
domestic violence shelters, community-based programs, refugee services,
and many more. Our goal is to raise the standard of care for
traumatized children by developing and delivering evidence-based
treatment and services in a timely and effective way.
I would also like to speak about the Individuals with Disabilities
Education Improvement Act, a critically important piece of legislation
that helps to support services for children who are disabled. I would
especially like to thank the committee for recognizing the disabling
effects that trauma exposure can have for young children, and for the
inclusion of language in the bill that will help children who struggle
in school as a result of trauma and the effects of traumatic events.
A report on developmental disabilities and trauma was developed by
the NCTSN, and has been submitted for the record. That report includes
information from population studies showing that the national
prevalence rate for developmental disabilities in the U.S. is 1.8
percent. This translates into many children in our school systems
needing the specialized education provided through IDEA. Additional
studies have shown that individuals with developmental disabilities are
at increased risk for abuse as compared to the general population. For
example, 64 percent of maltreated children have a disability, such as
behavioral disorders; speech, language, or learning disabilities; or
mental retardation. Children with mental retardation were the most
severely abused. When we identify a child with special needs, it is
essential to determine the full context of the child's life and history
so that the most appropriate services can be provided.
It is therefore a major step forward for the Senate to recognize
that the development of vulnerable young children can be thrown off
course because of traumatic experiences, and that, with timely
intervention, a child's life can be supported back onto a normal
developmental path.
Question 4. The New Freedom Commission on Mental Health and the
Surgeon General's report both identified a national shortage of mental
health professionals trained to treat mental illness in children and
adolescents. I have introduced S. 1223, The Child Health Care Crisis
Relief Act, which creates incentives to help train, recruit, and retain
child mental health professionals through loan repayments,
scholarships, and grants. Do you feel passage of this legislation would
be helpful in reducing the shortage of qualified professionals?
Answer 4. The passage of S. 1223 would significantly reduce the
shortage of qualified professionals in several ways. First, it provides
graduate students and working professionals with much needed financial
support to further their studies with competitive grants. The proposed
bill also addresses all the major issues and recommendations of the
President's New Freedom Commission Report, especially the need to:
Reduce disparities and the burden of unmet needs and lack of access
to services among minority groups.
Establish ``evidence-based practices'' as the bedrock of service
delivery.
Improve quality and accountability.
Through my work with the National Center for Child Traumatic
Stress, and the 54 affiliated sites that form the larger National Child
Traumatic Stress Network, I am very aware of the difficulties of
insufficient numbers of trained health care providers who are expert in
child mental health or child trauma. In our network, we are directly
linking providers with training programs so that we can enact one of
the basic principles in delivery of services to children--to make
services available to the children where they are, in schools and other
community settings where they live their lives. This is why our network
is helping to bring trauma-informed services to children in schools,
residential treatment centers, child welfare systems, correctional
facilities, rural clinics, domestic violence shelters, community-based
programs, refugee services, and many more. Our goal is to raise the
standard of care for traumatized children by developing and delivering
evidence-based treatment and services in a timely and effective way.
But without sufficient numbers of providers, and without a decent and
fair health care reimbursement system, even the best training programs
may not lead to successful integration of more providers throughout the
system of child health care. This is why school-based mental health
programs, IDEA improvements, and mental health parity legislation must
be pursued at the same time that we enhance training programs for child
health care providers.
Senator DeWine. Dr. Douce, thank you.
Ms. Douce. Good morning, Chairman DeWine and Senator Reed.
Thank you very much for inviting me here today. As a member of
the American Psychological Association and as director of the
Counseling and Consultation Services at the Ohio State
University, I oversee the provision of a broad range of mental
and behavioral health services to nearly 50,000 students a
year. I appreciate this opportunity to speak with you today
about the growing mental and behavioral health needs of college
students as you consider the College Care and Counseling Act.
Let me start with an example. Consider a senior in the
business school who is struggling with a broken relationship.
He cannot sleep, he cannot concentrate, he does not go to
class, and he finds himself sitting outside his ex-girlfriend's
apartment at night waiting to see whom she is dating. He
imagines beating that man to a pulp. He is a first-generation
college student. He works 25 to 30 hours a week in addition to
going to school, and he is qualified for significant financial
aid to put himself through college. If he cannot address his
emotions and his behavior, he is at risk of not graduating and,
frankly, at risk for stalking. It is hard for him to seek help,
but seeing his whole future disintegrating has convinced him to
try counseling.
In my written testimony, I offer an example of a young
woman with a severe eating disorder and a young man that is at
high risk for suicide.
Situations like those I have just shared are common to
college and university campuses throughout our country. During
the period from 1975 to 1995, college and university counseling
centers saw a dramatic increase in both the numbers and the
severity of the mental health concerns.
In fact, many of the students that colleges and
universities want to retain leave school for personal rather
than academic difficulties. A number of studies have shown a
positive relationship between counseling services and actually
staying in school and graduating. It is a lose-lose situation
when a student who has taken out loans, received Federal grant
aid, does not complete his or her degree. The loans do not go
away. The student is not better off. And neither is our
government investment in them.
Now, let me just speak to some of the most serious issues.
The most serious issue to me is suicide. Suicide is the second
leading cause of death among college students. A 2000 survey by
the American College Health Association found that within the
previous year 22 percent felt they were so depressed that they
could barely function, 9 percent had seriously considered
suicide, and 1.5 percent had made attempts. In our own center,
last year, 273 students admitted to suicidal ideation at
intake, 11 had plans and means. None of those students died,
yet tragically three other OSU students did end their lives by
suicide.
Suicide is preventable with knowledgeable and skilled
intervention. Depression and anxiety are often at the root, and
these are curable diseases. increased awareness, early
detection, effective referral, and skilled intervention are the
keys, and I would like to commend you, Mr. Chairman, for your
leadership on the issue of suicide prevention.
A second major issue is alcohol and substance abuse.
Approximately 1,400 college students between the ages of 18 and
24 die each year from alcohol-related injuries; 500,000
students are injured while under the influence of alcohol;
600,000 students are assaulted by another student who has been
drinking; and 70,000 students are victims of alcohol-related
sexual assault and date rape. These numbers are astounding.
We know that facing the consequences of addictive behavior
is one of the first steps to change. College and university
counseling centers can play a major role in participating in
wellness and prevention programs, counseling students in
trouble, providing court-mandated therapy for students in the
legal system for alcohol-related behavior. Our services assist
students in facing their consequences, examining their choices,
and learning to choose more appropriate alternatives.
I would like to take my last few minutes to acknowledge the
leadership of Senators Reed and DeWine in meeting the mental
and behavioral health needs of college students with their
introduction of the College Care and Counseling Act. Along with
the support and involvement of Senators Smith and Clinton, you
have introduced significant legislation that can really make a
difference in the lives and successes of our Nation's students
enrolled in postsecondary education.
Funds would be made available for use for activities such
as prevention, screening, early intervention, assessment,
treatment, management, and education of mental and behavioral
health needs of students on campus.
This year, the Federal Government expects to spend $70
billion in student financial assistance. This investment often
makes the difference in a student's decision to pursue their
dream of a college education. While undoubtedly significant, it
is an investment that may not always yield the results we
anticipate.
Mental and behavioral health concerns and how they are
addressed can make this difference. I sincerely believe it is
one of the best returns on investment you can make. I hope that
as the Senate Health, Education, Labor, and Pensions Committee
moves forward with its reauthorization of the Higher Education
Act that this legislation will be a priority for inclusion in
the final bill. It is too important not to.
Finally, I would again like to thank you, Senator DeWine,
for having me testify in this important hearing today and for
cosponsoring this bill.
I will be glad to respond to any questions.
Senator DeWine. Thank you very much.
[The prepared statement of Ms. Douce follows:]
Prepared Statement of Louise A. Douce, Ph.D.
Good morning Chairman DeWine and Members of the Subcommittee. Thank
you for inviting me here today. As an active member of the American
Psychological Association and as Director of Counseling and
Consultation Services at the Ohio State University, I oversee the
provision of a broad range of mental and behavioral health services to
nearly 50,000 students each year. I appreciate this opportunity to
speak with you today about the growing mental and behavioral health
needs of college students as you consider the College Care and
Counseling Act (S. 2215).
Let me outline why these mental and behavioral health services on
college campuses are so important:
Maximize student success
Increase rates of retention and graduation
Provide crisis management and services
Provide mental health consultation to faculty and staff
Develop prevention strategies and contribute to a wellness
culture
Advance multicultural competency in a global community
Ensure appropriate continuum of care
I would like to begin by sharing some real life stories of college
students that have sought help at our counseling center at Ohio State.
Consider a senior in the business school who is struggling with a
broken relationship. He can't sleep, he can't concentrate and he finds
himself sitting outside his ex-girlfriend's apartment at night waiting
to see whom she is dating. He imagines beating that man to a pulp. He
is a first generation college student, works 25 hours a week and has
qualified for significant financial aid to put himself through college.
If he cannot address his emotions and his behavior, he is at risk of
not graduating and, frankly, at risk for stalking. It is hard for him
to seek help, but seeing his whole future disintegrating has convinced
him to try counseling.
Now consider a young woman who is a freshman in the Honors program.
She is very bright, has very high SAT scores and feels pressure from
everyone's expectations for her success. She has also had an eating
disorder since junior high school. She worries constantly, is obsessed
with her weight and limits food. Since starting school her anxiety has
been very problematic, she rarely eats and her weight has gone below
100 pounds. She realizes she needs help and seeks counseling.
Finally consider a graduate student who is struggling with
depression. He cannot get to sleep at night until 3 or 4 a.m. and then
oversleeps his 9 a.m. class. He has trouble getting out of bed some
days, does not enjoy anything he used to, pushes friends away, knows he
is failing and blames himself. About the only way he can think to
escape his despair is suicide. His mother, who lives 1,500 miles away,
convinces him to find the counseling center.
Increased Need
Situations like those I have just shared are common on college and
university campuses throughout our country. During the period from 1975
and 1995 colleges and university counseling centers saw a dramatic
increase in both the numbers and severity of mental health concerns. A
national survey of counseling center directors confirmed that this
trend of increased demand continued throughout the 1990s.
More specifically, a research consortium of 36 counseling centers
found increases in anxiety, fear and worries and dysfunctional behavior
including eating disorders, alcohol and substance abuse and anger/
hostility. They also reported increases in the impact of violence,
family dynamics, depression and bipolar disorder.
This study outlines the major issues in college student mental
health:
Depression, anxiety and anger (also referred to as
Affective Disorders)
Eating Disorders and body image distortion
Traumatic Stress Reactions following exposure to
Violence in community and war (returning veterans
& internationals)
Date rape, harassment and stalking
Family discord, dysfunction and abuse
Natural disasters around the world
Alcohol and substance abuse
Future, career and crisis of hope
In the years ahead, I would expect to see the trend of an
increasing number of students seeking mental and behavioral health
services to continue--if not grow at a more significant pace. Current
research suggests that more students are entering college with prior
treatment histories of severe mental illness now controlled with
medication, a great thing. However, they may have more difficulty with
adjustment to change and are at increased risk of relapse or
reoccurrence without appropriate mental health support. In addition,
the Institute for Higher Education Policy recently reported that
between 2000 and 2015, the college-age population will increase by 16
percent or 2.6 million students, 80 percent of whom will be ethnic
minorities, and nearly half Hispanic. The report noted that students
from ethnic minority communities historically suffer most from
financial, academic, and cultural barriers. This may be especially
salient for first generation college students. Providing culturally
competent therapy and prevention programming is a vital element in
graduating a fully diverse class. A better-educated population is in
turn necessary for the United States to remain competitive in a global
economy. We, as a Nation are counting on them to be successful.
Students Who Receive Mental and Behavioral Health Services Have Higher
Retention Rates
In fact, many of the students that colleges and universities want
to retain leave school for personal rather than academic difficulties.
Recent research has demonstrated that students who receive counseling
for their mental and behavioral health needs reported increases in
``personal well being, academic success and retention.'' Further, a
number of studies have discovered a positive relationship between
counseling services and retention rates. It's a lose-lose situation
when a student, who has taken out loans and received Federal grant aid,
doesn't complete his or her degree. The loans don't go away. The
student is not better off--and neither is our government investment in
them. On the other hand, both the student and the government win when a
student who received financial assistance from the Federal Government
graduates and goes on to future success. That student is better off--
and so is our Nation. Sometimes all that it takes to turn a potentially
tragic situation into a success story is an interest and commitment to
a student's mental health needs.
Suicide Prevention
Let me speak to one of the most serious issues in this population,
suicide. Suicide is the second leading cause of death among college
students. A 2000 survey by the American College Health Association
found that within the last year 33 percent of college students reported
feeling hopeless, 22 percent said they felt so depressed they could
barely function, 9 percent seriously considered suicide; and, 1.5
percent had actually attempted suicide. Last year in our center, 273
students admitted to suicidal ideation at intake, 11 had plans and
means. None of those students died yet, sadly, three other OSU students
did end their lives by suicide.
The Ohio State University participated in a decade long study of
suicide at Big 10 Universities in the 1980's. The researcher, Dr. Mort
Silverman, visited with coroners and traced all student deaths to
verify all deaths by suicide and determine patterns. The overall number
of such deaths was less than the rate for the general population aged
15 to 24. Dr. Silverman attributed this to the relatively greater
access to mental health care through the Big 10 university counseling
centers. What were especially helpful from this study were patterns
specific to each university. At Ohio State we had a significant number
of deaths by cyanide and a higher rate among international graduate
students than the other schools. We immediately addressed access to
cyanide in chemistry labs and developed greater prevention efforts with
the international population including orientation workshops on family
stress, dating ``American style'' and stress management. Since then we
have had no cyanide deaths and reduced our suicide rate by 40 percent
from 4.5 persons to 2.7 persons over the last 5 years. That is 2.7 too
many, but lower than one would predict for 50,000 students. Suicide is
often preventable with knowledgeable and skilled intervention.
Depression and anxiety are often at the root and those are curable
diseases. Increased awareness, early detection, effective referral and
skilled intervention are the keys. I would like to commend you Mr.
Chairman for your leadership on this issue of suicide prevention.
Alcohol and Substance Abuse
Approximately 1,400 college students between the ages of 18 and 24
die each year from alcohol-related unintentional injuries, including
motor vehicle crashes. Five hundred thousand students are injured while
under the influence of alcohol and 600,000 students are assaulted by
another student who has been drinking. Seventy thousand students are
victims of alcohol-related sexual assault or date rape. These numbers
are astounding. The related damage in drunk driving, vandalism,
property damage and police involvement is incredible. In 2001,
approximately two in five (44.5 percent) college students reported high
risk or binge drinking. Our own data at Ohio State University indicates
that this rate continued to climb in 2002 to 52.8 percent (from 44.2
percent in 2000). We also saw a 10 percent increase for women, students
of color, students of legal drinking age and seniors. We did see a
decline in use by first year students, which we attribute to a
multifaceted education campaign. We have known for years that college
students engage in high risk drinking. We also know that many of these
students stop this behavior sometime during their college career. Many
do not. We also know that facing consequences of addictive behavior is
one of the first steps to change. College and university counseling
centers can play a major role in participating in wellness and
prevention programs, counseling students in trouble and providing court
mandated therapy for students in the legal system for alcohol related
behavior. Our services assist students in facing their consequences,
examining their choices and learning to choose more appropriate
alternatives.
Counseling and Mental Health Service Reductions
As you probably know, college tuition continues to rise
dramatically. State subsidies for higher education continue to be cut
across the Nation and college administrators are caught in the squeeze.
They look to cut costs internally wherever possible and mental health
services have been severely impacted. In the last 10 years colleges and
universities have had to set session limits (39 percent 1992; 44
percent in 2002), impose fees (7.4 percent in 1992, 15 percent in 2000)
and reduce staff. At a time when the mental and behavioral health care
needs of students are increasing, the means to meet those needs are
being reduced. Employing usage fees affects students on financial aid
disproportionately. These students have fewer resources to start with
and may be at higher risk for leaving school because of personal
problems--problems that could be resolved with appropriate and
accessible care.
Campus Care Act
I would like to take my last few minutes to acknowledge the
leadership of Senators Reed and DeWine in meeting the mental and
behavioral health needs of college students with their introduction of
the College Care and Counseling Act--S. 2215. Along with the support
and involvement of Senators Smith and Clinton, you have introduced
significant legislation that can really make a difference in the lives
and successes of our Nation's students enrolled in postsecondary study.
This bill will help thousands of students get the help they need, when
they need it and better insure the return in our Nation's investment in
them.
S. 2215 authorizes $10 million in competitive grant funds to
college counseling centers, mental health clinics, and psychology
service centers within institutions of higher education to create or
expand the mental and behavioral health services to students. Funds
made available can be used for activities such as prevention,
screening, early intervention, assessment, treatment, management and
education of the mental and behavioral health needs of students on
campus. Resources may also be used to better educate families about the
psychological health of their children. These are critical areas
identified by counseling centers on campus that need attention. Over
the past 5 years, counseling center directors reported substantial
increases in the percentage of students they see with severe
psychological problems, sexual assault concerns, alcohol problems,
illicit drug use, and eating disorders with little to no increase in
resources to support their work.
Why Support College and University Counseling and Mental Health
Services? Why the Federal Government?
This year, the Federal Government expects to spend nearly $70
billion in student financial assistance. This investment often makes
the fundamental difference in a student's decision to pursue the dream
of a college education. It is the most significant contribution the
Federal Government makes to our Nation's postsecondary students. And
while undoubtedly significant, it is an investment that may not always
yield the results we anticipate--for a variety of reasons, but often
due to undiscovered, unaddressed or unmet needs related to mental and
behavioral health problems.
Mental and behavioral health concerns and how they are addressed--
can make the difference between a student that finishes in 4 years
versus 7; a student that graduates and one who drops out; and a student
who takes his or her own life and one that goes on to live a healthy
life. The Campus Care and Counseling Act calls for a small contribution
of resources but it offers a sound, targeted, intervention, based on
research, that can yield big contributions in areas including academic
success, retention, graduation rates and life and death.
I sincerely believe it is one of the best returns on investment you
can make. I hope that as the Senate Health, Education, Labor, and
Pensions Committee moves forward with its reauthorization of the Higher
Education Act that this legislation will be a priority for inclusion in
the final bill. It is too important not to. Finally, I would again like
to thank you, Senator DeWine for having me testify at this important
hearing today and for cosponsoring S. 2215.
I will be glad to respond to any questions.
Senator DeWine. Dr. Davis?
Ms. Davis. Mr. Chairman and members of the subcommittee, I
am grateful for this opportunity to talk with you today about a
developmental stage that is ignored and a group of young people
that we cannot afford to lose. I study the transition into
adulthood of youth with the most serious mental health
conditions and the public systems with which they are involved.
I hope my testimony, which is based on my and my colleagues'
research, convinces you that we need to change our service
systems to help these young people become contributing members
of society rather than what our service systems do now, which
is to abandon them and their families in the middle of this
critical developmental stage.
The transition period covers ages 14 to 25. Of those who
are 14 to 25, 2 to 3.5 million of them have the most serious
mental health conditions. The typical transition to adulthood
that most of us experience is based on the steady accumulation
of cognitive, emotional, and social maturity and increased
skills and knowledge so that by age 25 society reasonably
expects us to have finished school, to be working, and to move
out of the family home.
For adolescents with serious mental health conditions,
particularly those in public systems like special education,
child welfare, or child mental health, their odds of becoming
successful young adults are bleak. Disability and circumstance
slow their steady accumulation of maturity skills and
knowledge. By young adulthood, about 30 percent have
experienced homelessness. The rate of school dropout,
unemployment, drug or alcohol problems, and pregnancy covers
around 50 percent. And by age 25, up to 65 percent have been
arrested. In essence, they are failing in every domain of adult
functioning.
But the real failure is our inadequate service systems.
While their need for services does not go away, our service
systems do, right in the middle of this critical developmental
stage.
This mid-transition service loss is caused by unintentional
barriers that are produced by the separateness of our child and
adult funding streams, entitlements, and service systems. Not
only do individuals lose services, but the services that do
exist rarely address the particular needs of youth with serious
mental health conditions.
Let me illustrate some of these barriers through real life
stories. Matt, who had been involved with special education,
child welfare, and the State child mental health system since
age 5, could not access the State's adult mental health system
when he turned 19. Matt lived in a State, like many other
States, in which child and adult mental health systems restrict
access to their services to those who have one of a list of
qualifying psychiatric diagnoses. In 62 percent of States, the
list of diagnoses for adult services is more restrictive than
they are for child services. Matt did not have one of those
qualifying adult diagnoses, and he was denied any further
access to the State's mental health system.
Hannah, who developed a major depressive disorder when she
was 16, had been on an adolescent psychiatric hospital unit for
6 months when she turned 18. With little notice, she was
transferred to the adult unit. There she was the only patient
under age 30. The sudden shift of unit that broke off her
relations with those on the adolescent unit and put her with
older adults that she found frightening led to despair and
suicide attempts. When she eventually left the hospital, like
most young adults in the adult mental health system, she found
few programs that had any younger adults in them and no
recognition of her transition support needs.
We have learned that the causes of this service inadequacy
and the mid-transition service loss are complex. For example,
State mental health systems are greatly dependent on Medicaid
funding. Child eligibility for Medicaid is different from adult
eligibility. And as a result, each day some young people with
serious mental health conditions lose the payer of their needed
services because of the passage of a birthday that marks entry
into adulthood.
While the solution to these problems is complex, the goal
is clear. Give these young people a chance for successful
adulthood by providing supportive services throughout the
transition age, until adult functioning has been attained. No
States have come close to this goal, although most are making
efforts.
To achieve this goal, we need to motivate our systems to be
creative in solving the system problems, to embrace this
developmental stage, and to embrace these young people. We also
need to develop more knowledge to guide these efforts.
I thank you for providing a forum from which greater
progress may evolve. I would especially like to thank you,
Chairman DeWine, and Representative Stark for your focused
effort in the transition issue.
Senator DeWine. Doctor, thank you very much.
[The prepared statement of Ms. Davis follows:]
Prepared Statement of Maryann Davis, Ph.D.
Mr. Chairman and Members of the Subcommittee, I am Maryann Davis,
Ph.D., a psychologist on the faculty of the Center for Mental Health
Services Research, in the Department of Psychiatry at the University of
Massachusetts Medical School. Over the past 10 years I have conducted
research on the developmental needs of youth with serious mental health
conditions during the transition to adulthood and the public systems
with which these young people are involved. I am very grateful for the
opportunity to talk with you today about a developmental stage that is
ignored, in a group of young people we can't afford to lose. I hope my
testimony convinces you that we need to change our service systems to
help these young people become contributing members of our society,
rather than what our systems do now, which is to abandon them, and
their families, in the middle of this developmental stage.
The transition period covers ages 14 through 25. At any given time,
there are 2-3.5 million individuals in the transition age who have the
most serious mental health conditions. The typical transition to
adulthood that most adolescents experience involves the steady
accumulation of cognitive, emotional, and social maturity, that under
most conditions, results in increased skills and knowledge so that by
age 25 we reasonably expect young people to finish school, be working,
move out of the family home, develop adult friendships and loving
relationships, and begin to contribute to our society. For adolescents
with serious mental health conditions involved with public systems,
like special education, child welfare, or child mental health services,
their odds of becoming successful young adults is bleak. During
adolescence their psychosocial development is delayed in every area. By
young adulthood about 30 percent have experienced homelessness, almost
half have a developed drug or alcohol abuse or dependence, half have
dropped out of high school, about half are unemployed, up to half of
these young women have become pregnant, and, by age 25, up to 65
percent have been arrested. In essence, as a group, they largely fail
in every domain of adult functioning.
But the real failure is our inadequate support system. While their
psychiatric disability does not go away, our support system for them
does. In the midst of this important developmental stage there is an
abrupt loss of services that has no correlation with an improvement in
their state of mental health. Rather it is the result of myriad system
barriers erected by the separateness of our child and adult services,
agencies, funding streams, and entitlements. Adolescent services that
address the particular transition needs of those with serious mental
health conditions are too rare. Few of these adolescents gain access to
the adult mental health system, which contains vocational, supported
education, housing, and substance abuse services in addition to mental
health treatment. However, the few who are given access to adult
services encounter find that adult systems typically have no
developmental framework in their policy or practice. There is little
recognition that a 22-year-old needs different types of services than a
40-year-old. Thus the adult system, that frequently denies them any
entry, also typically offers few services that are appropriate or
appealing to this young adult population. Currently, there is no State
that has been able to overcome these system problems.
I'd like to relate one young person's story to demonstrate this
point. Matt became involved with special education, child welfare, and
the child mental health system since age 5. By age 17 he had a social
worker from each of these systems who were responsible for finding
services for him. He had a single mother and younger siblings. His
residential treatment ended at age 17. He was sullen, depressed, and
had angry outbursts. He was on numerous psychotropic medications. He
yearned for acceptance, but put up a gruff unfriendly exterior to ward
off the expected rejection.
His special education program couldn't find a school program for
him for months. Things got worse at home. He joined a gang, fathered a
son, and turned 18 in the ensuing months. Like so many youth with
serious mental health conditions he dropped out of school. His
transition plan, mandated by the Individuals with Disabilities
Education Act became moot upon his dropping out. The school made an
application for him to access adult mental health services which could
start serving him when he turned 19. But, in his State, like many
States, the child and adult mental health system restricts their
services to those who have one of a narrow list of qualifying
psychiatric diagnoses. In 62 percent of States the list of diagnoses is
more narrow in the adult than child mental health system. Matt didn't
have one of the adult diagnoses, and was denied any further access to
the State's mental health system after age 19.
Upon his 18th birthday his child welfare case was closed. The John
Chaffee Foster Care Independent Living Act allows many youths to
continue voluntarily in child welfare services after age 18, receive
independent living supports, and extends their Medicaid coverage to the
age of 21. But, like many young people in his position Matt was not
interested in any further involvement with this Agency.
By age 19 he was a legal adult, with little guidance, who had lost
all his child services. He didn't know how to apply for disability. He
was uninsured. He had no diploma. No steady source of reliable income.
And no hope. He was soon hospitalized for a suicide attempt, and was
never able to provide financially or emotionally for his son.
Matt's situation is unfortunately common among the young people
with serious mental health conditions in our public systems. While
special education and child welfare systems have developed many
programs and approaches to aide the transition to adulthood, those
approaches are targeted at nor well suited for youth with serious
mental health conditions. Transition supports in the State child mental
health system are sparsely distributed across the country, and adult
mental health system has not begun to address the needs of the younger
adult population. We miss a critical window of development. We have an
opportunity to help these youths become productive adults in our
society, to work, have homes, have friends, and start families. But we
squander that opportunity, to the detriment of us all.
The solution to these system problems is complex, but the goal is
clear. We need to provide appropriate transition supports continuously
into adulthood until the services are no longer needed. If we are to
achieve this goal we need to encourage innovation and creative
solutions to the current system barriers. We need to create the
motivation to change these systems and we need to develop more
knowledge to guide us as we solve this complex problem.
There are solutions to be had at every level. At the Federal level,
changes such as extending eligibility for Medicaid coverage for youth
with disabilities to age 25, would facilitate the provision of
continuous services throughout the transition stage. State mental
health authorities can work to make their eligibility criteria the same
for adult and child services. At the local level, young people can be
invited into the change process, to help guide the changes so that they
are appealing to them. We also need more research to develop and
demonstrate treatments or services that are effective with this age
group. Achieving our goal will prevent crime, homelessness, lost
productivity, and lost members of society.
Thank you, Mr. Chairman and Members of the Subcommittee, for
providing a forum from which greater progress may evolve. I would
especially like to thank Senator DeWine and Representative Stark for
their focused interest in the transition issues.
Response to Questions of Senator Bingaman From Maryann Davis
Question 1. Every year, an estimated 9 percent to 13 percent of
children and adolescents in the United States experience a clinically
significant mental disorder that warrants treatment. Yet, according to
the Surgeon General's Report on Mental Health, two-thirds of these
vulnerable young people do not receive any mental health treatment at
all. What can we do to improve access to treatment?
Question 2. Evidence-based treatments are now available for the
full range of child and adolescent mental disorders. Yet these
effective treatments fail to reach a majority of those who can benefit
from them. How can we close the gap between research and real-world
practice to ensure that evidence-based treatments are available in
community service settings?
Question 3. Children with serious emotional disturbance often have
multiple problems and require services from several systems, including
the mental health, educational, child welfare, and juvenile justice
systems. How can we enhance the coordination and collaboration of
various child-serving systems?
Question 4. The New Freedom Commission on Mental Health and the
Surgeon General's report both identified a national shortage of mental
health professionals trained to treat mental illness in children and
adolescents. I have introduced S. 1223, The Child Health Care Crisis
Relief Act, which creates incentives to help train, recruit, and retain
child mental health professionals through loan repayments,
scholarships, and grants. Do you feel passage of this legislation would
be helpful in reducing the shortage of qualified professionals?
The first three questions are covered very thoroughly in the New
Freedom report for children and adolescents. What is not covered very
well in that report are the specific needs of youth during the
transition into adulthood. I will focus my answers on that age group.
(1) INCREASING ACCESS. Your question is particularly important for
youth with mental health conditions during the transition to adulthood.
All studies converge on the fact that there is a critical loss of
services between ages 16-23. Thus, that figure of 67 percent not
receiving needed services increases dramatically during these ages. I
will address some of the factors that contribute to the loss of
services and to not accessing service in the first place.
(A) Stigma. Teens and younger adults want to fit in with their
peers, they do not want to be labeled as mentally ill. In this age
group it is the young people themselves who need to be encouraged to
identify their mental health need and to access services that can help
them. The social stigma of mental illness is the worst of any
disability group. Thus, more young people can be identified and treated
if access is destigmatized. Reducing the stigma of screening or
treatment can be achieved in various ways. The first principal is to go
to where they are; the internet, schools, the mall, public transit,
etc. For example, USE THE INTERNET. Having an internet screening device
with some link to services is an anonymous way that any teen or young
adult, who is struggling in their functioning can get some sense of
whether they have a mental health condition that could benefit from
treatment. The second principal is to imbed the screening and treatment
into issues that youth care about. For example, youth might not want to
take a mental health screening test, but they may be very interested in
finding out why they're struggling to work, finish school, earn money,
or move out on their own. Imbedding screening for mental health, and
other conditions, into tools that they can readily access to help them
figure out how to do these things better is a friendly way to help them
find out that not only do they have a mental health condition, but that
its getting in the way of things that they want to achieve, and there's
help to be had. The third principle is ensure that the development of
screening and treatment mechanisms is guided by young person input
(young people with mental health conditions). They are the only ones
who can really indicate what approaches will attract or repel young
people. Making these kinds of innovative approaches work, and making
them ethical could be the focus of Federal programs, like SAMHSA, NIMH,
OSERS, NIDRR, NIDAA. Encouraging these agencies to work collaboratively
increases the likelihood that the issues that young people care most
about will help overcome the issue of stigma.
(B) Disappearing Payors. Many young people who have mental health
conditions, and are receiving treatment for them, lose access to
treatment upon the passage of an ``adult'' birthday. Essentially the
payor of their ``child'' treatments no longer covers them at this age,
and the payors of ``adult'' treatments will not fund them. This occurs
across numerous payors. Each suggestion below focuses on the kind of
action that would increase access to mental health services because of
the continued presence of a payor for those services. Parents'
insurance can cover a young adult child as long as they remain in
school. However, for young people with serious mental health
conditions, this offers little help because fewer than half finish high
school and only a small fraction go on to post secondary school.
Encouraging insurance companies to allow parents of youth with
disabilities to maintain their coverage until age 25, regardless of
school status, would help maintain the continuity of services. It might
also be a motivator for screening--since they would have to document
disability. Medicaid eligibility is much broader for children than for
adults. The changes take place somewhere between age 18 and 21.
Extending eligibility for Medicaid automatically for anyone with a
disability up to age 25 would go a very long way toward providing
access to needed services. Changing the definition of disability, as
used for Medicaid or social security, so that those between the ages of
18 and 25 could qualify as disabled under EITHER the child or adult
definition of mental health disability would also ensure that those who
were considered disabled as a 17.99 year old, would still be considered
disabled throughout the period of transition. Extend the eligibility
for independent living supports provided through the John Chaffee
Foster Care Independent Living program to the age of 25 for those with
disabilities. Provide an extra pot of money in the Federal mental
health block grants administered through SAMHSA for States to access to
increase the numbers of youth who receive State mental health care
during ages 16-25.
(C) Embrace the developmental stage of emerging adulthood. In
``normative'' or ``typical'' development there is a new stage of
development that has been recognized and described; emerging adulthood,
which starts around age 18 and ends around age 25. There is all kinds
of legislation around entitlements and programs that defines childhood
as ending at 18, or 21. For youth with disabilities, their development
is delayed, and society's expectation that they function as adults at
18 or 21 is misplaced. Supports for youth with disabilities need to
uniformly be extended to at least age 25. If ``typical'' development
means full adult functioning at 25, then, really, supports,
entitlements, programs, etc., should be extended to age 28 for youth
with disabilities. This is a guiding principal that should be applied
to many legislative efforts that affect the population of adolescents
and young adults with mental health conditions.
(2) Evidence-based practices do not exist for youth in transition.
Like so many other realms, we have focused our evidence-based
approaches on either child/adolescent or adult populations. The
efficacy Multi-Systemic Treatment that is so impressive for reducing
delinquency is unknown for youth aged 18-25. The efficacy of the
Assertive Community Treatment Program is unknown for 14-21 year olds.
The first step for youth in transition to adulthood is to develop
evidence-based practices; perhaps emphasizing the need to test and
perhaps modify existing models for this age group. NIMH should be
encouraged to offer funding in this area. The various other
recommendations from the New Freedom report for extending the evidence
base to real world setting holds for this age group as well.
(3) Youth in transition have needs that extend from the child to
the adult system. Thus, not only do the various child-serving agencies
need to be involved, but the various adult-serving agencies as well;
adult mental health, housing, vocational rehabilitation, substance
abuse services, supported education, corrections, etc. The
recommendations in the New Freedom Commission Report for reducing
fragmentation are excellent. I would encourage one particular aspect
for youth in transition; the embracing of outcomes across domains of
functioning to guide funding. Many of the ``costs'' of not treating
youth during the transition to adulthood aren't mental health costs but
they are broader societal costs; homelessness, unemployment, crime,
substance use, youthful pregnancy. We need to bring together the
Federal, State and local agencies that are involved in these domains of
functioning so that their accountability cannot be shifted off to the
other. If we use young adult outcomes as our guides we will definitely
improve services for this age group, and improve our society.
(4). Child Health Care Crisis Relief Act. Looks good to me, except
that it does not include professionals specializing in young adults,
I'd VERY MUCH like to see that age group included. Again, if we can
conceptualize the developmental process leading to adulthood as
including the ``emerging adult'' stage rather than ending at that stage
we will be more closely aligned with the real development of these
individuals, and with the supports that they need to be launched into a
successful adulthood.
Response to Questions of Senator Reed From Maryann Davis
A significant number of mentally ill patients also suffer from
substance abuse problems, known as ``co-morbid conditions''. As you
well know, there are different funding sources for each. Likewise,
these individuals access services in a variety of settings, such as
residential facilities and the juvenile justice system. Many of you
spoke to the fragmentation of mental health care and the difficulty of
accessing services.
Question 1. Is there evidence of improved outcomes, better
compliance, and cost-savings through providing combined services? For
example, properly treating an alcoholic's bipolar illness to avoid
relapsing on alcohol.
Answer 1. The simple answer is yes.
Comorbid mental health conditions and substance abuse. Let me say
that I am not an expert on the dual diagnosis/comorbidity literature.
So I have examined the literature to provide an answer to you for this
specific population. Two current critical analyses of the existing
research on the subject indicate that, there are still many holes in
our knowledge, the most common finding is that treatment of both
disorders (combined services) is more successful in terms of improved
functioning, symptomatology, or drug/alcohol use, than either alone.
For those with comorbid mental illness and substance abuse disorders,
there is evidence of improved outcomes when both conditions are
treated.
This said, both reviews were quite clear that the evidence at this
point is thin. There have not been many or many well-designed studies
to draw from, and the specifics of the question are vast. Just as
specific disorders of mental illness differ, so do the specific
disorders of substance abuse, and we don't have a complete picture
about combined treatments for all of the different combinations. One
specific study even found that subjects with social anxiety disorder
and alcohol dependence who were treated for both conditions
simultaneously actually fared worse in their subsequent alcohol use,
than those who were treated only for their social anxiety disorder.
However even this finding argues for the coordination of substance
abuse and mental health treatment; if for some conditions it is
advantageous to hold off on treatment of one condition that needs to be
coordinated. Thus, all evidence points to the need for well-coordinated
services.
Overall, the specifics of good, evidence-based treatments for
individuals with dual diagnoses are just beginning to emerge. Even less
is known about combined treatments for adolescents, for youth in
transition to adulthood, or for different cultural groups. I saw no
literature on cost savings or specific findings on combined services
improving treatment compliance. Cost improvements are implied by some
of the findings that combined services reduce emergency room/detox
visits, but cost analyses have not been conducted. These questions have
simply not been addressed through research. Many more studies are
needed.
My own research indicates that for transition-aged youth with dual
mental health/substance abuse conditions, the combined condition is
exponentially worse in terms of high school dropout, not living with
family, and trouble with the law. Again, the little bit of evidence
from the research literature is supportive of coordinating treatment
for both conditions. One study found that youths with SED, whose
substance use disorder went undiagnosed by clinicians during
adolescence, fared much worse than either youth with identified dual
conditions, or youth with mental health conditions alone. One
interpretation of the findings is that those who were identified as
comorbid received some treatment for both conditions, while those whose
substance use disorders were unrecognized deteriorated from lack of
treatment for the substance use disorder. Similarly, a study of
adolescents with ADHD (Attention Deficit/Hyperactivity Disorder) found
that adult substance use disorders were much higher in adolescents who
had not received pharmacological treatment for their ADHD. Taken
together these studies suggest that either untreated substance use or
mental health conditions can both lead to increased substance abuse in
young adulthood.
Combined services in other areas of multiple needs. There is no
direct evidence about better outcomes, engagement, or cost
effectiveness of combined services in the transitioning population. The
circumstantial evidence is strong.
(1) They clearly are involved across multiple systems; mental
health, education, child welfare, juvenile justice, substance abuse,
homeless-runaway youth, etc.
(2) Their functional impairments span different agencies'
expertises; jobs/career, education, housing, adequate parenting.
(3) Their ``conditions'' are often multiple, mental health combined
with substance abuse, learning disabilities, developmental
disabilities, and chronic health conditions are common, and treatment
for these other conditions are most commonly offered through non-mental
health agencies.
(4) Services that address multiple needs have been shown to be
associated with better outcomes in various domains of functioning,
which can be translated into cost savings.
The general literature on well-coordinated services across
different service domains is supportive of the notion that coordination
alone is insufficient. That is, coordinating average care may not be
any more effective than not coordinating it, though families are more
satisfied when even insufficient care is coordinated. What is really
needed is the coordination of high quality care. Several clinical
trials are now showing things like combined pharmacotherapy with highly
specified cognitive behavioral therapy is more effective than either
alone. Although these particular services wouldn't necessarily come
through different funding streams, it does highlight that combined and
high quality services are more effective than ill-informed
uncoordinated services.
Question 2. In your experience, are different Federal funding
streams a barrier to quality mental health care?
Answer 2. Yes.
Quality mental health care, particularly during the transition
stage, depends on being able to fluidly address functional needs as
they arise. A young person is not going to focus on their mental health
treatment needs if they are imminently homeless, if they can't get a
job and they need to support themselves, or if their lives are
miserable at school. Similarly, not attending to their mental health
care will interfere with their abilities to address these problems.
Funding streams are service-based, not people-based. They help
foster the silos of agencies at the State level. Those silos are not
well coordinated at the individual or State level. As a result of that,
families and youth experience gaps and redundancies in services and
treatments, and providers are frustrated with an inability to access
needed services. More subtly, the silos foster silo-think. That is
those working with these young people tend to think about only the
services that their systems offer in addressing their needs, and know
less, have less access to, and less often consider services offered
through other systems.
My research has also shown that one of the barriers to accessing
transition support services for adolescents in State mental health
systems was that other agencies held the purse strings for many of the
needed services, and were not motivated to address the unique needs of
the youth in their systems that had mental health conditions. For
example, many administrators described that there were foster care
independent living dollars (Chaffee funds) that were available to youth
in foster care. However, those funds were invested preferentially in
youth who were succeeding (i.e. expected to complete high school), or
were used for generic independent living supports that didn't address
the needs of youth with mental health conditions.
Administrators also described that the differing eligibilities for
different Federal programs, such as Medicaid, EPSDT, etc., added to the
complexity of how long they could provide services to youth. Some youth
were eligible for Federal programs until they were 18, while others
were eligible until age 21, so the child system ``covered'' to age 21,
but only if an individual had health care coverage to that age.
Finally, an analysis of ``transition support'' programs for youth
with serious mental health conditions revealed that service providers
attempting to serve this population must currently expend tremendous
effort cobbling together fragments of funding that are generally time-
limited, service-limited, age-limited, disability-limited, or income-
limited. In a study of 18 providers serving the transitioning
population, researchers found that these 18 providers used 40 different
fund sources, most of which were not shared by more than 2-3 providers.
The most common category of funding was private (i.e. private
foundations), rather than public sources. Without a stable,
comprehensive funding base, the system of care for youth in transition
will develop at a snail's pace.
Similar issues of silos exist within children's services. An
excellent publication analyzing the impact of separate Federal funding
streams in children's systems is Help or Hindrance?: The Federal
Government and Interagency Systems of Care for Children with Serious
Mental Disorders.
Fragmentation of services and conflicting program rules have long
impeded children's and families' access to needed care. This issue
brief examines the Federal Government's role from the perspective of
State officials responsible for children's mental health programming.
(February 2003), which can be found at http://store.bazelon.org/
children.html.
Senator DeWine. Senator Sessions has joined us. Jeff, do
you have any opening comments?
Opening Statement of Senator Sessions
Senator Sessions. I am delighted to have Linda Champion
here. She is a champion for the mentally ill and has been a
friend of mine for a number of years, has always been
exceedingly helpful in helping me understand these issues, and
is a leader in Alabama in it.
I thank you for inviting her to testify. Good to see her
husband, Graham, back there. They are really fine Alabama
citizens and leaders in particular on this issue.
Senator DeWine. Very good.
Mrs. Champion, with that introduction, you are next.
Mrs. Champion. Thank you so much, Chairman DeWine, Senator
Sessions, Senator Reed, and Members of the Committee. Thank you
so much for holding this critically important hearing today. I
am truly honored to be part of this panel and to speak on
children's mental health issues.
I am Linda Champion of Montgomery, AL. Since 2000, I have
been a member of NAMI Alabama working as a child advocate. I am
also vice president of Alabama Family Ties, an advocacy group
that collaborates with NAMI Alabama to provide support and
education to parents of children and adolescents with mental
illness. I am first and foremost the mother of a 17-year-old
son who has been struggling with mental illness since the age
of 7. It is from the perspective of both a mother and a child
advocate that I am honored to come before you today and provide
this testimony on the current state of the children's mental
health system.
NAMI is the Nation's largest grassroots advocacy
organization, with 220,000 members representing children and
adults with mental illness and their families.
So often I have listened to families pour out their
heartfelt stories of failed attempts to access mental health
services for their child in a system that is fragmented, overly
bureaucratic, and not at all family-friendly. The system fails
to offer support, adequate information, and resources to
parents and caregivers of children with mental illness. The
opening statement of Surgeon General Satcher's Report on
Children's Mental Health really says it all: ``the burden of
suffering experienced by children with mental health needs and
their families has created a health crisis in this country.''
For families of children with mental illness, this is, quite
frankly, an understatement. Our family's experience is right in
line with the finding of the President's New Freedom Commission
that our Nation's mental health system is in shambles, with no
defined or coherent system at all. At various times, we are
accused of being ambivalent and uncaring. It is also suggested
to us that the sins of the father are visited on sons, a direct
reference that Lee, who is my adopted son, was being punished
for the sins of his father. Parents and caregivers of children
with mental illness in my State and communities across this
country are forced to navigate a fragmented, overly
bureaucratic, and family-unfriendly system.
You have my family's personal story in the written
testimony submitted for the record. I would like to highlight
some of our struggles in attempting to access mental health
services for Lee. I will do so in referencing numbers: three,
the number of acute-care placements Lee has had in his short
life thus far; five represents the number of residential
treatment facilities Lee has lived in before he was finally
stabilized so that he could function in a less restrictive
environment; six is the number of different psychiatrists he
has seen in his short life because of changes in residential
treatment places; seven represents the number of changes that
have occurred in medication combinations; 10,000-plus is the
number of miles each year that we have traveled to visit Lee
and stay involved in his treatment in the various residential
treatment facilities he has been placed in; two is the number
of custody changes that have occurred in Lee's life with our
family. We gained custody through adoption, lost custody to
obtain mental health treatment, and fought for custody of Lee,
and he is now with us.
But one represents the life of a child who has missed out
on far too many normal childhood things--scouting, dating,
going to proms, the normal things that parents usually
experience with their children.
As a parent who has lived through a difficult struggle in
attempting to secure appropriate mental health services for
Lee, I have the following suggestions of immediate actions that
should be taken to help eliminate the burden that families are
forced to endure and to improve services for children with
mental health illnesses:
End the discriminatory cap on private insurance coverage
for mental health services. Our family was forced to give up
custody because we quickly exhausted our lifetime private
health benefits to provide the treatment for Lee. Please
support the mental health parity legislation, S. 486.
End the practice of forcing families to give up custody of
their child to access mental health services. There is no
greater injustice than forcing a parent to choose between
maintaining custody of their child or seeking services for him.
No parent should ever face this choice, yet it happens every
day in this country, and families like ours are forced to give
up custody and live with the consequences. Please support the
Keeping Families Together Act to help end this practice, S.
1704.
Encourage States to develop effective interagency
collaboration and partnerships between all child-serving
agencies and with families. We were forced to act as case
manager for Lee over and over again to work with the multiple
agencies that failed to communicate.
Train and educate all child-serving professionals about the
early warning signs of mental illnesses in children. All child-
serving professionals, especially school professionals and
those working in child welfare and juvenile justice, should be
trained to recognize the early warning signs of mental health-
related concerns in children and know what to do when they
exist.
Build an effective children's mental health treatment
system. Alabama and every other State must invest in building
an effective children's mental health treatment system that
provide a full array of services for children and families.
Parents need to be provided with appropriate information
about their child's diagnosis and treatment. We were often left
in the dark about Lee's diagnosis and treatment options that
were available to us. Much of what we learned we had to learn
on our own.
The good news is that the scientific community has made
great strides in understanding childhood mental illnesses and
treatment works for many children, if you can get it. Of
course, we deeply regret that it took so long to access
services for Lee and what we have missed along the way.
Mr. Chairman, my dream is that the U.S. Senate and the
House of Representatives will realize the precious treasure we
have in our Nation's children. We can only help them reach
their full potential if we can ensure that children who suffer
from mental illnesses receive appropriate treatment and
services. The health care needs of our children should be a
national priority just like it is for juvenile diabetes,
obesity, cancer, and other childhood illnesses.
You and your colleagues are in a unique position to truly
impact the quality of the lives of our children. We ask that
you do so by doing the right thing today for our children and
their families.
I want to thank you for the opportunity to present one
parent's story. I hope and trust that in some small way I have
raised questions in your mind about what we can do to help our
children.
Thank you so much. I will be glad to answer any questions.
Senator DeWine. Mrs. Champion, thank you very much.
Response to Questions of Senator Bingaman From Linda M. Champion
Question 1. Every year, an estimated 9 percent to 13 percent of
children and adolescents in the United States experience a clinically
significant mental disorder that warrants treatment. Yet, according to
the Surgeon General's Report on Mental Health, two-thirds of these
vulnerable young people do not receive any mental health treatment at
all. What can we do to improve access to treatment?
Answer 1. Improve Access to Treatment--Early Identification and
Intervention
The majority of children and adolescents suffering from a mental
illness largely go undiagnosed due to a number of reasons: parents are
uninformed of normal childhood development, schools label their erratic
behavior as delinquent thus forcing them into a juvenile justice system
that we already know from private and governmental studies are ill
equipped to handle mental illness within their systems, and the
appalling gaps in our child and adolescent mental health system force
families to seek treatment far from their communities or none at all,
and the lack of coordination within child serving agencies who serve
some of these children in different capacities or not at all. Our child
serving systems must be given opportunities and challenges to work
together in identifying and treating children and adolescents with
mental illnesses. From a parent's perspective, child-serving agencies
do not work together and will point to their sister agencies for
treatment services--forcing parents to become case managers for their
child's treatment. My recommendations would be as follows:
Train and educate all children-serving professionals about the
early warning signs of mental illnesses in children. All child-serving
professionals: day care providers, teachers, pediatricians, child
welfare, juvenile justice professionals must be trained to recognize
the early warning signs of mental health concerns.
Build an effective children's mental health system. Federal, State
Government, and commercial insurers should be encouraged to realign
funding policies related to children's mental health needs and develop
a comprehensive array of services to meet their needs. Alabama and
every other State must invest in building an effective children's
mental health treatment system that provides the full array of services
for children and families. This includes home and community-based
services, school-based services, respite services and more. We learned
first hand about the critical shortage of qualified children's mental
health providers and the lack of appropriate services. Our nation needs
to address the critical shortage of children's mental health
professionals and the lack of appropriate services, especially in rural
communities.
Question 2. Evidence-based treatments are now available for the
full range of child and adolescent mental disorders. Yet these
effective treatments fail to reach a majority of those who can benefit
from them. How can we close the gap between research and real-world
practice to ensure that evidence-based treatments are available in
community service settings?
Answer 2. Close the gap between research and real-world practice to
ensure that evidence-based treatments are available in community
service settings.
We know there is a large, reliable, and evidence-based body of
knowledge in the research community to know what works for our
children, yet there is a definite delay in the transference of this
knowledge to the very people who would benefit from it. From my
perspective, professionals often do not have sufficient knowledge to
make both accurate diagnosis and effective pharmacological
interventions. Parents must then do the research themselves and
advocate for their children. Not all parents are able to do this and
our children languish in ineffective mental health systems. A
collaborative public/private oversight organization comprised of both
Federal representatives and private professionals from the child and
adolescent psychiatric community should be established to review;
approve and certify; publicize, their findings; and lastly educate all
mental health care professionals on these findings. Federal grant
programs should follow their recommendations. Accurate information on
evidence-based practices must be disseminated to States, training
initiatives on these practices should be established, and policy
changes in Federal funding to States willing to effect change should be
made. And lastly, families should be involved in the process to ensure
fidelity to the process.
Question 3. Children with serious emotional disturbance often have
multiple problems and require services from several systems, including
the mental health, educational, child welfare, and juvenile justice
systems. How can we enhance the coordination and collaboration of
various child-serving systems?
Answer 3. Enhance the coordination and collaboration of various
child-serving agencies.
Encourage States to develop effective interagency collaborations
and partnerships between all child-serving agencies and with families.
Encourage all Federal child serving agencies to establish performance
based indicators for collaboration programs--reward those States that
are willing to work together by blending and braiding Federal and State
dollars. Provide Federal seed money to States so that data systems can
be created to provide both monitoring of collaborative programs, but
accountability for agencies back to their respective Federal grantor.
On the flip side, penalize those States that are not willing to set up
true collaborative efforts.
Question 4. The New Freedom Commission on Mental Health and the
Surgeon General's report both identified a national shortage of mental
health professionals trained to treat mental illness in children and
adolescents. I have introduced S. 1223, The Child Health Care Crisis
Relief Act, which creates incentives to help train, recruit, and retain
child mental health professionals through loan repayments,
scholarships, and grants. Do you feel passage of this legislation would
be helpful in reducing the shortage of qualified professionals?
Answer 4. Passage of S. 1223, The Child Health Care Crisis Relief
Act.
Absolutely, as we know the bill creates incentives to help recruit
and retain child mental health professionals providing direct clinical
care, and to improve, expand, or help create programs to train child
mental health professionals. The passage of this legislative would
create a richer infrastructure of child and adolescent professionals.
The lack of qualified mental health providers is part of the reason for
the unacceptably high number of youth with mental illnesses that fail
to receive treatment and why families are often told that they must
wait on long waiting lists for services for a seriously ill child.
The Surgeon General put it best in stating that there is a
``dearth'' of child psychiatrists, appropriately trained clinical child
psychologists, and social workers in this country. Here are the facts:
The Federal Government has designated 3,543 urban, suburban, and
rural localities as Mental Health Professional Shortage Areas due to
their severe lack of psychiatrists, psychologists, social workers and
other professionals to serve children with mental illnesses;
According to the U.S. Bureau of Health Professions, the demand for
the services of child and adolescent psychiatrists is projected to
increase by 100 percent by 2020, while the number of these
professionals is expected to increase by only 30 percent resulting in a
severe shortage of child and adolescent psychiatrists;
According to the American Academy of Child & Adolescent Psychiatry,
there are currently approximately 6,300 child and adolescent
psychiatrists in this country with a need at 32,000;
The National Center for Education Statistics within the U.S.
Department of Education reports that the national average student-to-
school counselor ratio in U.S. schools is 513:1, more than double the
recommended ratio of 250:1.
The consequences of untreated mental illnesses in children are
devastating. These youth are at higher risk for school failure and drop
out, alcohol and drug use, suicide (the 3rd leading cause of death for
10-24 year old young people), and engaging in high risk and unlawful
activity.
In Alabama, our families know on a very personal basis the effect
of mental health professionals. Many times, parents will see three or
four different therapists and/or psychiatrists per year in visiting
mental health clinics, or need to travel great distances to seek
services for their children.
Senator DeWine. Ms. Altenburger?
Ms. Altenburger. Mr. Chairman, Members of the Subcommittee,
my name is Barbara Altenburger, and I am from Philadelphia, PA.
I am the mother of Bruce Altenburger, who is a 15-year-old. I
would like to thank you for the opportunity to speak about a
serious problem I and many other parents across the country
have encountered in trying to access services for our children
through the public mental health system. We struggle to become
our child's advocate--often learning how to make the system
respond through a trial-and-error process. We become
overwhelmed, frustrated, confused, and emotionally drained by
the process. Many parents give up.
It is important for you to know that the range of needed
mental health services is frequently unavailable, that there is
very little coordination among the systems that are mandated to
serve our children, and that there is usually no plan to
determine which public agency should be responsible for serving
a particular child. This evasion of responsibility results in
long delays in providing children with desperately needed
mental health and related services. Consequently, our children
are unserved, underserved, and inadequately served.
The mental health needs and problems of children are
diverse in nature and intensity. Some children have disorders
that respond to intervention, diagnosis, treatment, and
services. Others with more complex disorders and needs often
find that their tragic plights are made more extreme by
inadequate mental health services. Although every parent's
story is unique, let me outline generally what my experience
has been and how it is relevant to the experience of many other
parents and children with severe emotional disturbances.
My story and that of my son Bruce is a story of the
difficulty of diagnosing mental disorders in children and
adolescents. It is about the difficulty of finding qualified
specialists to care for a very troubled child, and the even
greater difficulty of getting access to needed care because of
health insurance barriers. It is about the pressures put on
parents to give up custody of their children to get needed
mental health services. Finally, for children who are eligible
for publicly funded care, it is about what some call the
``public mental health system.'' Parents across the country can
tell you that there is no system. But it is worse than that. It
is a maze.
My child and many other children have gotten services
through a variety of different, uncoordinated programs. The
school system has provided certain services. Behavioral issues
have led to contact with the juvenile justice system and its
services. We have gotten services through other publicly funded
programs. But there has never been any coordination between
these agencies and no true system of care providing needed
wraparound services.
As a result, parents must become their child's best
advocate and case manager. I have no reason to think that
mental health services in Philadelphia are markedly better or
worse than those elsewhere. My experience is that rather than
enlisting parents in their child's recovery, too many programs
lack respect for parents. In the children's recovery too many
programs lack--I am sorry. Parents are seldom given a role in
planning or even decisionmaking concerning their child's care.
My experience is that while public programs are intended to
help our children, they too often fail them. Yet the philosophy
too often is that the ``child failed the program'' rather than
vice versa.
What is it like to have a child with bipolar disorder and
learning disabilities? What is it like to be a mother perceived
as incompetent? What is it like to be the parent of a child
who, from an early age, always seemed to require more? A child
who was noticed, but often for negative reasons. A child whose
school, from nursery school on, continually suggested
conferences. A child whose years in elementary schools were
marked by frequent contact with principals, teachers,
counselors. A child who seemed to be almost but never quite
okay.
At different times my house has been a battleground. My son
has been severely depressed, angry, out of control, hysterical,
and manic. At times he would be full of remorse--[Pause.]--
excuse me--and experience great bewilderment over his
behaviors. I felt helpless and pained by his apparent distress.
My family had urged me to have my son evaluated by a child
psychiatrist. It took over 90 days for our first appointment
paid for by my personal insurance. As a result of the
evaluation, my son was diagnosed as having severe emotional
problems and possible bipolar. From that time on, Bruce has
been seen by a variety of psychiatrists, and every one tried a
different approach, different medication, and gave a different
diagnosis. And during this period, Bruce was evaluated by the
school psychologist because of a variety of behaviors,
including running out of school, crying in the classroom,
walking in the hallway while class was in session, and yelling
that he wanted to go home. It was at this time that I could no
longer afford private insurance because of the high out-of-
pocket costs it required me to bear. I then turned to the
county mental health system.
My first experience at a community mental health center was
devastating as I was told that I was the cause of my son's
problems--the cause of my son's problems and that I needed
treatment, that he was perfectly okay. I was stunned that a
professional could make this statement after meeting with me,
not my son, for approximately 40 minutes and when the
psychiatrist wanted to give me a prescription for Bruce which
would calm him down and enable me to handle him. I went to
another community mental health center and was put on a long
waiting list.
And the process continues across our country of long
waiting lists, inexperienced mental health workers, and a
dramatic lack of public health system psychiatrists, and of
parents being told that their child has failed the program.
What I thought would make a difference never made enough of
a difference. My child does not stay on an even keel for longer
than a month or two.
My child has attended many different special education
programs for children with severe emotional disturbance
provided by the school system. Through our public mental health
system, he has been placed in residential treatment facilities
for long-term treatment and has been hospitalized. During his
hospital stays, he has been drugged to the point where he
became incoherent. He has been labeled as ``severely
emotionally disturbed'' as well as ``conduct disordered'' and
``bipolar.'' I have been told that his future is bleak, and at
other times that he could have a productive life. I have been
criticized for being overly involved and for doing too much, as
well as reproached for being underly involved and not trying
hard enough. I have been blamed for the ``failures'' at our
home, school, and community by some and praised for good
parenting by others. I have been treated with respect, and
ignored.
Parents across the country feel that they are their best
resource for their children. They are the only consistent
factor in their child's treatment and can provide information
and insight that can come from no other source. They steel
themselves against the subtle and not so subtle accusations of
blame and failure. Parents go from agency to agency, all
professing to help troubled children. We read books written by
``experts.'' We receive counseling and attend seminars. We try
to find a ``cure'' for our children's outbursts, inability to
learn and socialize like apparent ``normal'' children, and a
few of us do manage to find help from the mental health system.
But for the unlucky majority, the feeling of hopelessness
increases as they see little improvement despite their efforts
to work cooperatively with professionals that work with their
children. Many see a future full of heartache and little hope.
I have not given up on my son and continue to fight for his
well-being and for the provision of needed services to help him
overcome his problems. But I demand that our public mental
health programs not give up on him either. There is much that
must be done to improve public mental health service delivery.
I agree that it must be transformed. But the one key element of
that change, I believe, must be a change in the relationship
between these programs and the parents of these children.
Regardless of whether a child is living at home or away
from home, family members must be viewed as a primary resource
for their children and must have a voice and a vote as an equal
partner in the planning and decisionmaking concerning their
child.
Mr. Chairman and Members of the Committee, children are not
little adults. They must be treated by professionals that have
been trained to work with children and adolescents. Parents in
every State urge you to make children's mental health a real
priority and to develop and fund effective Federal programs
that serve our children's mental health needs. We know that
there are pockets of expertise, but that is not on a scale that
bears any relationship to the magnitude of the problems we
encounter every day. Designing these needed programs may not be
simple, but they must include a few elements. They must have
child-centered services that are family-focused, community-
based, multisystem, culturally competent, and least
restrictive. Such services must be available across the
country, not just as pilots in a handful of communities. And
given that our children represent the Nation's future, we must
approach this with the seriousness, energy, and scope of the
Manhattan Project.
Thank you.
[The prepared statement of Ms. Altenburger follows:]
Prepared Statement of Barbara Altenburger
Mr. Chairman and Members of the Subcommittee: My name is Barbara
Altenburger and I am the parent of Bruce Altenburger who is 15 years
old. Thank you for the opportunity to speak to you about the serious
problems I and other parents like me across the country have
encountered in trying to access services for our children through the
Public Mental Health System. We struggle to become our child's
advocate--often learning how to make the system respond by a trial-and-
error process. We become overwhelmed, frustrated, confused, and
emotionally drained by the process. Many parents give up!
It is important for you to know that the range of needed mental
health services is frequently unavailable; that there is very little
coordination among the systems that are mandated to serve our children
and there is usually no plan to determine which public agency should be
responsible for serving a particular child. This evasion of
responsibility results in long delays in providing children with
desperately needed mental health and related services. Consequently,
our children are unserved, underserved or served inappropriately.
The mental health needs and problems of children are diverse in
nature and intensity. Some children have disorders that respond to
intervention, diagnosis, treatment, and services. Others, with more
complex disorders and needs, often find their tragic plight exacerbated
by an inadequate public mental health system. Although every parent's
story is unique, let me outline generally what my experience has been,
and how it is relevant to the experience of many other parents and
children with serious emotional disorders.
My story and that of my son Bruce is a story of the difficulty of
diagnosing mental disorders in children and adolescents. It is about
the difficulty of finding qualified specialists to care for a very
troubled child, and the even greater difficulty of getting access to
needed care because of health insurance barriers. It is about the
pressures on parents to give up custody of their children to get needed
mental health services, finally, for children who are eligible for
publicly funded care it is about what some call the ``public mental
health system.'' Parents across the country can tell you there is no
``system.'' But it is worse than that. It is a maze. My child, and many
other children, has gotten services through a variety of different,
uncoordinated programs. The school system has provided certain
services. Behavioral issues have led to contact with the juvenile
justice system and its services. We have also gotten services through
other publicly funded programs. But there has never been any
coordination between these different agencies and no true system of
care providing needed wraparound services. As a result, parents must
become their child's most effective advocate and their case manager. I
have no reason to think that mental health services in Philadelphia are
markedly better or worse than they are elsewhere. But my experience is
that rather than enlisting parents in the children's recovery, too many
programs lack respect for parents. Parents are seldom given a role in
planning or even decision-making concerning their children's care. My
experience is that while public programs are intended to help our
children, they too often fail them. Yet the philosophy too often is
that the ``child failed the program'' rather than vice-versa.
What is it like to have a child with a Bipolar Disorder and
learning disabilities? What is it like to be perceived as the
incompetent mother? What is it like to be the parent of a child, who
from an early age, always seemed to require more? A child who was
noticed, but often for negative reasons. A child whose school, from
nursery school on, continually suggested conferences. A child whose
years in elementary schooled were marked by frequent contact with
principals, teachers, and counselors. A child who seemed to be almost,
but never quite, okay.
At different times my house has been a battleground. My son has
been severely depressed, angry, out of control, hysterical, and manic.
At other times he would be full of remorse and expressed great
bewilderment at his behavior. I felt helpless and pained by his
apparent distress.
My family urged me to have my son evaluated by a child
psychiatrist. It took over 90 days for our first appointment paid for
by my personal insurance. As a result of the evaluation he was
diagnosed as having serious emotional problems and possible Bipolar
Disorder. From that time on Bruce was seen by various psychiatrists and
each one tried a different approach, different medication and gave a
different diagnosis. And during this period Bruce was evaluated by the
school district psychologist because of his various behaviors including
running out of the school, crying in the classroom, walking the
hallways while classes were in session and yelling that he wanted to go
home. It was at this time that I could no longer afford private
insurance because of the high out-of-pocket cost it required me to bear
and I then turned to the county mental health system.
My first experience at a community mental health center was
devastating as I was told that I was the cause of my son's problems and
that I needed to be in treatment and that he was perfectly okay! I was
stunned that a professional could make this statement after meeting
with me, not my son, for approximately 40 minutes. I was astonished
when the psychiatrist wanted to give me a prescription for Bruce which
would calm him down and enable me to then ``handle him''. I went to
another community mental health center and was put on a long waiting
list.
And the process continues across our country, of long waiting
lists, inexperienced mental health workers, a tremendous lack of public
mental health system child psychiatrists, and of parents being told
that their child failed the program.
What I thought would make the difference never made enough of a
difference; my child does not stay on an even keel for more than a
month or two at a time.
My child has attended many different special education programs for
children with serious emotional disturbance provided by our school
system. Through our public mental health system he has also been placed
in residential treatment facilities for long-term treatment and been
hospitalized. During his hospital stays he has been so drugged, that he
became incoherent. He has been labeled ``severely emotionally
disturbed'' as well as ``conduct disordered'' and ``Bipolar.'' I have
been told his future is bleak and, at other times, that he can have a
productive life. I have been criticized for being over-involved and
doing too much, as well as reproached for being under-involved and not
trying hard enough. I have been blamed for the ``failures'' at home,
school, and community by some, and praised for good parenting by
others. I have been treated with respect, as well as patronized and
ignored.
Parents across the country feel they are the best resource for
their children. They are the only constant factor in their children's
treatment and can provide information, insight, and continuity that can
come from no other source. They steel themselves against the subtle and
not-so-subtle accusations of blame and failure. Parents go from agency
to agency, all professing to help troubled children. We read books
written by ``experts.'' We receive counseling and attend seminars. We
try to find a ``cure'' for our child's outbursts, inability to learn
and socialize like other apparent ``normal'' children and a few of us
do manage to find help from the mental health system. For the unlucky
majority, the feeling of hopelessness increases as they see little
improvement despite all their efforts to work collaboratively with the
professionals that work with their children. Many see a future full of
heartache and little hope!
I have not given up on my son, and continue to fight for his well-
being and for the provision of needed services to help him overcome his
problems. But I demand that our public mental health programs not give
up on him either. There is much that must be done to improve public
mental health service delivery. I agree that it must be
``transformed.'' But the one key element of that change, I believe,
must be a change in the relationship between these programs and the
parents of these children.
Regardless of whether a child is living at home or away from home,
family members must be viewed as a primary resource for the child and
must have a voice and a vote as an equal partner in planning and
decision-making concerning their child.
Mr. Chairman and Members of the Committee--children are not little
adults and they must be treated by professionals that have been trained
to work with children and adolescents. Parents in every State urge you
to make children's mental health a real priority and to develop and
fund effective Federal programs that serve our children's mental health
needs. We know that there are pockets of excellence, but not on a scale
that bears any relationship to the magnitude of the problems we
encounter every day. Designing these needed programs may not be simple,
but they must include a few key elements. We must have child-centered
services that are family-focused, community-based, multi-system,
culturally competent and least restrictive/least intrusive. Such
services must be available across the country, not just as pilots in a
handful of communities. And given that our children represent our
Nation's future--we must approach this with the seriousness, energy,
and scope of the Manhattan Project. Thank you.
Senator DeWine. Thank you very much.
Senator Reed?
Senator Reed. Thank you very much, Mr. Chairman, and thank
you, ladies, for your eloquent and very effective testimony.
Senator Kennedy and Senator Dodd asked me to raise some
questions on their behalf, so if I may, Ms. Wong, in our
schools today children are so often subject to some traumatic
events--snipers, CNN war stories, and contaminated mail. How
can schools best help these students when they face these
unusual traumatic circumstances? And what resources become
paramount when responding to these types of situations?
Ms. Wong. In our work also with the Department of Justice
with Cops in Schools as well as our National Center for Child
Traumatic Stress, we found that children are exposed to
violence at a far higher rate than in previous generations and
if we exclude even the violence that they see on TV. The
research would suggest, at least the little that we have, after
the Oklahoma City bombing, show that especially younger
children are quite traumatized by television viewing of this
sort. But with older children, we are finding higher rates of
exposure to community violence, to bullying in schools, to acts
of violence in the community.
In Los Angeles, for instance, in certain of our
communities, especially, I think this can be generalized in
communities where there are large urban centers, communities
where there are high rates of crime, gang activity, drug abuse,
etc, we found up to 90 percent of our students in these
selected communities had high rates of violence exposure, and
27 percent of them had posttraumatic stress disorder at
clinical levels, 16 percent of them had depression at clinical
levels. We suspect that among special education children as
well that are integrated into the school district programs that
there might be high rates of violence exposure.
I think what we have, we are very lucky in Los Angeles to
have a school mental health program, but I think the testimony
you heard today is very true. I think it is quite fragmented. I
think schools try to piece it together as best they can and
that there needs to be a system in place where across the
country--it does not matter whether you live in a rural or
urban or suburban area--that any parent can access these
programs for their children, and particularly, as we said,
programs that respond to trauma and depression and suicide.
I think these in particular are problems and disorders and
challenges that can be very well addressed, addressed early,
and really have a very good outcome, both for the mental health
of children and success in education.
Senator Reed. Another question, if I may, and I will
address it to Ms. Wong and Ms. Osofsky. We screen children for
vision. We screen children for hearing. We screen children
routinely for many things. And there is some discussion, at
least in the literature, about screening children for mental
health issues. Is that something that you would advocate or
could comment upon? Ms. Osofsky and then Ms. Wong perhaps.
Ms. Osofsky. The issue you raise, Senator Reed, is very
important. The answer is yes, we do need to screen for mental
health as we screen for medical conditions, physical
conditions, vision, hearing, those types of issues.
One of the problems and I think one of the very important
areas that I would urge the subcommittee to consider as we are
putting forth these bills is prevention and early intervention
is very important, but we cannot accomplish prevention and
early intervention unless we do screening. And there are ways
to do screening ranging from better education for child-care
providers, better education for child protection, certainly
better education for primary care providers and pediatricians
who see children as part of their well-baby checkups, including
mental health screening as part of ESDP, the Medicaid screening
that occurs routinely or is supposed to occur routinely for
children when they are referred or an evaluation.
And I think we need to turn to experts in the mental health
community to develop screenings that are feasible to use. It is
not feasible during a well-baby checkup to have to spend half
an hour in-addition to other kinds of things. But what we are
really interested in are screenings that would alert primary
care physicians or child-care providers or child protection or
even parent advocates under certain circumstances, a whole
variety of people, to what we call red flags. And when they
recognize some of these red flags, which could be behavior that
is out of control, aggressive behavior, which could be
withdrawal on the part of the child, which could be other types
of things, to then refer them for a more extensive evaluation.
So we need a variety of levels there.
But if these things are picked up earlier, we are able to
do much more in the way of prevention and early intervention.
Senator Reed. Thank you very much, Dr. Osofsky.
Dr. Davis, you sketched out a very complex and troubling
situation where people age out of the system. The story of the
young woman who was transferred from a pediatric psychiatric
setting to an adult one sounds like something out of Hollywood
in the 1930s--horrific.
Part of the problem is trying to coordinate the system, not
just the health care system but the housing system, the
substance abuse system. Any thoughts you have on how we can
better coordinate that?
Ms. Davis. You are right. It does all need to be
coordinated. Quick thoughts are difficult.
I think one of the things that we have learned in
children's mental health systems, the system-of-care principle
where we recognize that children have needs across many
different agencies certainly holds through this developmental
stage. And so one of the things that we might think about would
be the various mechanisms that we have already used to try to
encourage more system-of-care development where there is a
recognition that needs go across many different domains of
functioning and that there is expertise and resources that go
across our various public agencies.
And so I think to the extent that we can extend that
philosophy and those approaches--and basically there are
various different mechanisms. There are Federal funding
mechanisms. There are a variety of different mechanisms that
have developed to try to enhance a wraparound or a system-of-
care approach that would extend through age 25, I think we
would benefit tremendously.
I think what we have learned in children's mental health
would help us tremendously. There is a tremendous strength in
thinking about individuals developmentally, about thinking
about the critically important role of families, that when you
get into the adult mental health system, and other adult
systems, it does not exist. They tend to think monolithically
about the adult and not think developmentally, and tend to even
more so minimize family involvement. So I think that we can
take that strength from the kid side.
On the adult side, there is a lot of expertise that the kid
side does not have in terms of how do you help with vocational
rehabilitation, the more current models on recovery. Those are
very important--housing, co-morbid substance abuse.
Those are all issues that the adult system knows about.
They just do not know how to apply it to this developmental
stage. So I think that there is a lot to be done concretely.
I think at the Federal level there are many different
things that we can examine and I cannot give you a short answer
as to exactly what those should be, but clearly an examination
of the funding mechanisms, as I mentioned, in Medicaid would be
extremely important to look at in detail about what are some of
the mechanisms there that are barriers? What are some
mechanisms that could actually facilitate systems to solve this
issue?
I will just tell you quickly, last summer I spoke with one
member from every State who was in charge of, who was a lead
administrator for adult mental health systems for every single
State in the country. And one of the things that they said
about this population is that this age group, they are just one
of many populations that they have to worry about. In essence
it had not received a priority enough for adult systems to turn
around and handshake with child systems. I think that we have
many different mechanisms for encouraging that kind of
prioritization and that is really what needs to happen at this
time.
Senator Reed. Thank you.
Mr. Chairman, I am asking questions for both Senator Dodd
and Senator Kennedy, so I will not ask for three times the
time, but----
Senator DeWine. I was going to say that would give you
about half an hour.
[Laughter.]
Senator Reed [continuing]. Half an hour, that is right,
just the warm up time.
First, Dr. Douce, thank you for your kind words about the
legislation that the Chairman and I are sponsoring. One of the
aspects of getting health care is the community's support for
the individual. However, there is a stigma attached to asking
for help particularly for a college student asking for help,
any kind of help. Do you find that as a problem on campus?
Ms. Douce. Yes, I do, although I think it is lessening, and
we in fact have a stigma reduction committee as part of our
counseling center prevention outreach. Next week is Suicide
Prevention Week and our Stigma Reduction Group has designed a
number of sort of informational pieces to reduce the stigma of
accepting help and to demonstrate that it is actually a
strength to seek help, and it is a strength to seek help
earlier when the problem is just beginning than to lose your
whole term by sinking deeper and deeper into a depression of
anxiety.
Senator Reed. Thank you very much. Senator Dodd wanted me
to pose this question, and I recognize that none of the
panelists are MD's, but the recent controversy surrounding
antidepressants, and specifically the class of drugs known as
selective serotonin re-uptake inhibitors, SSRIs, raises real
questions about the appropriate use of these medicines in
children. Would anyone like to advance a view as to the use of
these medicines from your perspective, not as physicians but as
someone who closely looks at the children's mental health
system throughout the country? Dr. Osofsky.
Ms. Osofsky. I work within a medical center and I consult
frequently with child psychiatrists, and I am not an expert in
psychopharmacology. However, we see a great deal of use of
medications for children of all ages. We focus a great deal on
very young children as well, even children 3-years-old, where
we find their primary care physicians, often pediatricians,
will put them on sometimes even more than one medication. Many
of us are very, very concerned about the fact that instead of
the issues that you are addressing in terms of screening,
recognizing the problems, evaluation, early treatment,
intervention, actually that speaks to the whole age range.
People are very quick to put children on medication.
Part of it is I think the reimbursement system because some
of the reimbursement system is for a very few number of
sessions, sometimes even just a short consultation, and people
are looking for quick fixes. They think that the medication
will change the behavior, and I think it is really not only
unfortunate, but it does need to be used in a much more
cautious way.
What we would urge is to be able to do the things we have
been talking about in terms of screenings, good evaluations,
and then sometime medication is very helpful in conjunction
with treatment, but that better evaluations will probably lead
to much less medication as well as better reimbursement for
services.
Senator Reed. Thank you very much.
Thank you, Mr. Chairman, you have been most gracious. Thank
you.
Senator DeWine. Good questions. Thank you very much.
Senator Sessions?
Senator Sessions. Thank you, Mr. Chairman. You have been a
leader on this issue for so many years, and I am glad I could
be here. I am sorry I had to be at a conference on health care
this morning that caused me to be late.
One of the things we talked about, Dr. Osofsky, at the
hearing on how to contain health care costs, one of the
suggestions that I made is, with regard to prescription drugs,
that we are prescribing drugs that not only do not work, but
sometimes are harmful. That article that Senator Dodd referred
to and Senator Reed, indicates that is true on occasion. Do you
feel like there is enough certainty of efficacy of certain
drugs, and can we do a better job as a government helping to
establish which ones are effective and which ones are not,
therefore helping the psychiatrists and psychologists as they
treat young people?
Ms. Osofsky. Training is a very important issue, and
certainly in our medical schools and our medical centers we
offer a great deal of training related to psychopharmacology. I
would agree that if people were better informed about
medications that may work under certain circumstances and how
they might be used, that it would be helpful.
I think that, unfortunately, medications are being
prescribed, medications that speak to issues of mental illness
and mental disorders, and these kinds of issues, by people who
have had less experience with how those medications might
relate in various ways, but I also think, again, we are very
quick to think that we can provide some kind of medication to a
young person, as I say, even as young--we see them as young as
3-years-old and 4-years-old. Instead of evaluating the problem
in the context of what is going on with them, what is going on
with the problem, provide support to the family, a much more
integrated approach, so that then we might choose medication
after a period of time, and certainly it is very helpful with
various disorders, certainly bipolar disorder, other types,
depression, it can be very effective. But we do need to
evaluate certainly children within the context of relationships
and be very careful in terms of the types of treatment. And we
do need more reimbursement for services.
Senator Sessions. Any brief comment on that subject?
Ms. Champion, you are indicating, as did Ms. Altenburger,
that you did not feel like that some of the professionals or
health care personnel respected you or understood the
difficulties you were facing. At one point I think you
indicated they thought you were indifferent. Why do you think
that is? Is that a problem in the system?
Ms. Champion. Yes, it definitely is a problem in the
system. Parents go through this blame and shame cycle. There is
something inherent that a parent is to be able to control a
child, and if you cannot control a child, you are deemed a bad
parent. So you are not only----
Senator Sessions. Is that at school too sometimes?
Ms. Champion [continuing]. It is at school. I think it is
throughout the entire community, in school settings, in social
circles, church circles as well, and it is very difficult.
Parents usually feel very alone, very alienated. And mental
health professionals by and large, unless you really get in and
establish a dialogue and a relationship with the mental health
professional, it is very difficult to do so. You are
essentially separated from your child, whether you are entering
an acute care system or a residential system. Your child is
taken into the system and you are immediately separated from
that child, and not much interfacing with them. The systems
usually are not very family friendly to do so.
That also bears witness to a lack of coordination among the
child-serving agencies. There is a lot of finger pointing going
on, and that of course, boils down to dollars and cents. If
child-serving agencies can learn to braid and blend Federal and
State dollars in a different way, I think that you will find a
much better system overall for children, and a much fuller
array and richer array of services for children.
Senator Sessions. You certainly had a number of situations
in which your child was moved, and you had to make a lot of
different changes. Is that sort of symptomatic of what you were
saying, that the system is fragmented and not well organized?
Ms. Champion. Yes, sir. It certainly is. Mental health
professionals usually are not aware of a higher level of care
that is required for your child. They may certainly be able to
recognize that an outpatient treatment is not suiting the needs
of their child, that maybe residential treatment is required,
but oftentimes they cannot point you to a residential treatment
facility that would meet the needs of your particular child.
Senator Sessions. Thank you.
Ms. Altenburger, I thank you for sharing similar comments
from your background. I think my time has expired.
Thank you, Mr. Chairman.
Senator DeWine. Dr. Davis, I am not sure I understand fully
the barriers you are talking about in regard to this
transitional period of time. Can you spell that out for me so
that we can, my staff and I, and Senator Reed and Senator
Sessions maybe can do something about this?
Ms. Davis. I would be happy to. I think that the most
concrete barrier that we see is that we have separate funding
for child and adult services, and so what typically happens is
those systems evolve to serve each of their mandated population
as best they can. So we have various systems just preserving
children. You have those who are in the child welfare system,
special education. I do not have to tell you all the various
systems that we have.
What surprises me the most is when you get to a system
where there is no obvious reason why there should not be a
continuity within the mental health system. We have children,
adolescents, young adults, adults, older adults, all who have
mental health needs. We have split our systems into separate
child and adult systems, and what happens within those systems
is that the priority populations get defined differently, so in
the child system we have youth with serious emotional
disturbance, and adults is typically adults with serious mental
illness.
While in fact those disorders do not have to look very
different, States tend to interpret those as being very
different definitions. So in the adult system, they will
typically have a more narrow definition because they feel like
the adults that they are meant to serve are those with the most
serious and chronic conditions, and they often then do not take
into consideration what might be child--typically conditions
that develop in childhood that could continue into adulthood.
They say in their list, those are not diagnoses that get you
entry into the adult system.
So you have a group of young people, particularly things
that involve more behavioral kinds of components like conduct
or disruptive behavior disorder. If a young person is
identified as primarily suffering from that kind of diagnostic
criteria, when they go to--somebody has to apply for them to
get into the adult system even though they are in the State's
child system. They then have to apply. And at that point the
eligibility person typically says: this is not one of our
qualifying diagnoses. You cannot enter. So that is one of the
major things.
We just completed a study where we looked at, just in
policy, the differences for eligibility for child and adult
mental health systems within a singular State mental health
agency, and with the exception of one State, every single State
has some difference and some meaningful difference in their
eligibility requirements, and they require youth who have just
been served because they are a child, to meet the new service
eligibility for adulthood. That is a funnel. In essence there
is a significant group of young people who do not make it
through that funnel because of that eligibility difference.
What we tend to see as a result of that, the people who
work with these young people know that they are not going to
get them into the adult mental health system. They start
screening them out, in essence.
There are several States that show a tremendous marked
decrease in receiving services at age 16, and while not all of
that can be attributed to the service system, per se, young
people can decline services. There are a variety of reasons.
But one of the major ones that we know forces a barrier is that
if case managers know that they are not going to be entitled,
they start essentially screening them out of the system at that
point. So you end up with a very small number who actually
applies for eligibility to the adult system. That is at the
State level.
When we were doing that study we looked at Medicaid
eligibility entitlements and definitions, and what you see over
and over is that there are conditions and situations that will
entitle a child to access Medicaid eligibility. Those
definitions typically end at age 18. Sometimes States have the
flexibility to end that at 18, 19, 20 or 21. None of those goes
beyond age 21. What happens, in essence, is that you had a
condition that could qualify for a child but now that you are
now adult, you are no longer eligible for and you can lose
those Medicaid entitlements at that point or that Medicaid
service that you needed because you are not qualified any
longer.
Those are some of the simple concrete things that get in
the way of being able to provide continuous services. I think
the thing that more broadly leads to that is that we haven't
recognized this as a developmental stage, that we tend to as a
society say there is some age at which you are an adult, and we
have legally made that 18. For drinking purposes and those
kinds of things it is 21. But we do not recognize--we do for
ourselves and for those of us who have children who are college
age, most of us would not boot them out the door at 18. We know
that they continue to need services and we know that there is
sort of a new developmental stage that is being defined within
developmental psychology called ``emerging adulthood,'' and
that is defined as existing up to age 25. We as a society are
not yet making our service systems accommodate the fact that we
are not ready at 18 or 21 typically to function as adults, and
yet these more vulnerable young people who have even fewer
resources to draw from and forced out without any further
recognition.
So I think part of it is that we have made this false
dichotomy, you are either a child or an adult, and our systems
follow that and our funding follows that and our entitlements
follow that, but it is not in fact matching up at all with what
naturally occurs with a young person's development which
extends much more toward age 25.
Does that help clarify?
Senator DeWine. Sure. I think it is difficult, I think you
would agree it is difficult to translate that into legislation.
Ms. Davis. It is, although I think an examination of
Medicaid and----
Senator DeWine. I mean your point is very well taken and I
understand what you are saying, and we have got these
artificial barriers and they have been erected over the years,
and the question is how do you begin to try to break that down
and how do you begin to deal with the reality of the way people
live their lives, and we do not do that for anybody else, but
yet we have set this up for this group of people, and we have
kind of set this artificial barrier, and boom, there it is.
Ms. Davis [continuing]. I think one of the things that I
was impressed with when I looked at the Medicaid eligibility is
that there are some things that will extend for children who
have disabilities, certain entitlements from 18 to 21. That is
the kind of mechanism that may not open up the door for
everybody, but given that this is a partly vulnerable group who
has a disability, that kind of thing is possible.
Senator DeWine. Thank you very much.
Ms. Davis. You are welcome.
Senator DeWine. Dr. Douce, let me ask you about--you have
detailed, particularly in your written statement, what you have
done at Ohio State. What is your feeling as far as the universe
of colleges and universities across the country in how well
they are doing, how well we are doing as a society in regard to
providing mental health services to students today? How are we
doing today versus in 1990, 1980, 1970? I mean what have been
the trend lines here, particularly when we look at the suicide
problem? Let us just focus on that.
Ms. Douce. I think services are uneven I think across all
colleges and universities. Some have extensive, comprehensive
services available. Some have very limited services available.
Some have no services available. I think the issue of suicide
continues to be an issue, and I think the issue of anxiety and
drivenness feeds that suicidality, that it is actually a
combination of depression and anxiety that causes someone to
choose to end their lives, to end the despair.
The fact that it is uneven, the fact that college
administrators struggle with the rising costs of college and
trying to cut costs in any ways they can, some cut mental
health services out all together. Some provide very limited
mental health services.
Senator DeWine. If you do not know the answer to this, just
tell me, but is there a difference between campuses that are
residential campuses and campuses that are less residential or
more commuter campuses?
Ms. Douce. Absolutely. The reality is when you have
students on campus and you have a high residential population,
you have them 24 hours. So you have suicide attempts in the
dorms. You have drug overdoses. You have assaults. You have
things that you have to deal with. Those campuses tend to also
put mental health services in play because they need them for
the residential students.
For campuses that are primarily commuter, sometimes those
campuses, especially if they are regional campuses or draw from
a variety of different counties, those students are really at
risk to get the services they need because the local county may
not choose to serve them if they are not a resident of that
county. So the commuter services, the regional campuses, the
campuses that actually are trying to attract more rural
students, more first generation students, have some of the
greatest need and some of the fewest services.
The Act, what I think is important about this Act is it
applies grants. There will be competitive grants. There will be
a strong evaluative component to those grants, so that services
that are needed in unmet areas can be responded to.
Senator DeWine. You use the term ``availability of
services.'' It is one thing to be available. It is another
thing to be accessed. How do you deal with that?
Ms. Douce. I think there is a real important need to have
prevention and outreach services to really try to establish a
wellness culture on your campus. If we are out there doing
programs at different clubs, in classrooms, in residence halls,
in a number of places, you present yourself as someone for whom
you might go seek help. That is how you fight stigma reduction.
Availability is also about waiting lists and----
Senator DeWine. About what? I am sorry.
Ms. Douce [continuing]. Waiting lists, and the reality on
college campuses, when you talk about a trend from 1975 to
1995, many, many, many more students are seeking services, and
most university counseling centers have a hard time meeting
those services at the time they need to be met. If you spend
several weeks getting up the courage to go seek counseling, you
finally go, you get an urgent important or an intake
appointment, and then you wait another 3 or 4 weeks to get
service, you have lost your term. That is a problem.
Senator DeWine. Can you comment at all about the culture on
a campus? Is there any relationship between, if you know, if
you have read any studies on this or if there have been any
studies on this, about the pressure on campus, the academic
pressure or any other kind of social pressure connected with
the suicide rate?
Ms. Douce. I am trying to think of studies in my head.
Certainly the biggest increase that we have seen in the last 10
years is anxiety-related disorders, full-blown panic attacks,
obsessive-compulsive disorders, anxiety disorders in general.
That anxiety is related to the stress that many people feel
about needing to be at a certain place, needing to achieve in a
certain way, where we in our attempt to maximize student
success, have created a younger generation that is quite
driven, and driven with a sense of fear of not meeting certain
expectations, and that fear drives self-destructive behavior,
suicidal behavior, alcohol abuse behavior, cutting. We are
seeing more cutting in college students than we ever have.
Senator DeWine. Seeing more what?
Ms. Douce. Cutting, which is a self-injurious behavior,
where you actually cut yourself in a ritualistic way. Twenty
years ago when I started, if I saw a student who was cutting, I
could assume that they had had childhood sexual abuse. Today
that is not the case. It is actually a shared behavior, a very
self-destructive shared behavior, to relieve the anxiety and
stress that builds up. That does then relate to suicide. It
does then relate to serious mental health issues.
I would like to say that we have covered a whole gamut, and
more of the students in your system are coming to my system.
That is an advantage. One of the real advantages of medication
is we have many, many more people who are able to go to college
with serious mental disorders than they ever have before. We
have many, many more people with a variety of disabilities
going to college than we ever have before. They struggle with
transition. They struggle with adjustment. They are at higher
risk and need higher services, but it is to this Nation's
advantage to have our country continue to be able to compete
globally, that we graduate a much greater range of students,
more diverse students, more culturally sensitive.
Senator DeWine. Sure. I wonder if you could talk in more
detail about the alcohol and drug abuse focused services that
you provide. In particular, I am interested in students with
these co-occurring disorders. I wonder if you find a large
number of students with clinically diagnosed mental health and
substance abuse disorders.
Ms. Douce. Yes, the dual diagnosis is a major issue. In my
center we have expertise, a full range of expertise, but
specific expertise in substance and alcohol abuse. We work with
the Students Wellness Committee to try to do both alcohol
education and substance abuse education. We have groups that
focus on success, not excess, which is really not an
abstinence-based program but a responsibility-based program. We
accept court mandated DUIs. Part of my dream is actually to
develop a college student DUI program, because I think when
college students are sent to the community DUIs, they look at a
number of people that are older, have more serious addictions
and distance themselves. Yet, I think that first legal or
judicial infraction is an absolute educational opportunity to
require people to look at their own behavior.
Senator DeWine. Dr. Osofsky, you talked about the need to
have professionals better trained to identify people who have
these problems. I wonder if you could talk, for example, about
pediatricians. Are they getting the professional training today
in medical schools?
Ms. Osofsky. Actually, that is one of the groups that we
need to address very clearly related to training. The focus in
pediatric training has been, or primary care training as well,
primarily physical health. They may focus on vision and hearing
and those types of things, but much more on taking care of
those types of issues than mental health issues, and, yes, I
would agree with you very strongly that we need to address, in
medical school education as well as additional training for
pediatricians, ways to identify, the red flags to identify
mental health issues and refer for additional consultation.
One of the programs that I am involved with, Harris Center
for Mental Health, where we provide training to mental health
professionals, we also are actually just starting a program
where we are going to be consulting with pediatricians and
pediatric clinics as well to offer mental health consultation,
but also education and training for pediatricians.
So many things are missed at that point that that issue is
very important because often either at a well-baby check, or
even an emergency room check, that is the only time we are
going to see some of these people with the kinds of problems
that we are talking about, and I think that the issues that are
being raised on the college level with older children are also
very relevant for the younger children, the issue of
availability of services, access to services, the stigma around
services, and I think if we broadened our education related to
mental health issues for primary care physicians and
pediatricians, perhaps some of that stigma could be reduced and
be part of a regular care that they generally achieve.
Senator DeWine. Senator Sessions.
Senator Sessions. I do not know whether NIH is investing
enough in that. To me, some more research in general might be
helpful in how to diagnose and how to treat these illnesses but
that is another issue I suppose.
Dr. Davis, you really raise an interesting point about
children growing into adulthood. I visited a group home in
Huntsville, AL. It was basically built by HUD. We provide
housing for people who have difficulties anyway, and so they
pooled that money with some other money from other agencies,
and had a very nice group home for people with mental illness,
and it helped them, many of whom were working independently. Do
you think that would be something that might work for a number
of these children? And what percentage do you think could
benefit from something like that?
Ms. Davis. If I understand specifically what that
represents, this is certainly a group of young people who need
support around housing as they age out of the children's
system. Many of them are leaving foster care and foster care
settings, so they do not have----
Senator Sessions. A home to live in.
Ms. Davis. Any homes to go to, yes. So there is a large
number. I cannot put a precise number, but there are various
States that have looked at the child welfare population and
estimated up to 60 and sometimes higher proportions, have a
serious emotional disturbance, depending on where those studies
have occurred. So there is a good number of young people who
have those kinds of conditions exiting foster care with a
disability. That would clearly be helpful.
I think that there are many things that are available
within adult systems for adults with mental illness. I think
the crux of the difficulty for this age is twofold. You have a
group that is aging out of the children's system with a
category that we consider serious emotional disturbance, that
there is a group of them that will not meet the eligibility for
adults with serious mental illness because we define that
slightly differently. So because of that sort of arbitrary
distinction, some of them will not get into that housing
because somebody will say, oh, you do not have a mental health
disability because you do not meet the criteria any longer.
For those who do meet that criteria, they may have
developed their mental illness as a young adult, or they may
have had it since they were younger. The difficulty that we
have is that a lot of those programs that are currently funded
that adults can access are largely holding adults that are 30-
to 50-years-old, and so when we create a group situation in
particular, it is not very feasible to just make any old adult
program open to our younger adult population. First of all,
they will not accept it, they will not stay. For many of them
if they do stay it can be quite traumatizing for them. For many
of them essentially they just walk away. So it is a complicated
issue. It certainly is helpful. I certainly would not want to
say no, it would not be helpful, but I think we have to look at
some of these other barriers that are contributing to that not
being as helpful as it should be.
Senator Sessions. Thank you very much.
Ms. Champion, I know you and I talked one time about the
school and IDEA Individuals with Disabilities Education Act.
Most schools are supposed to be able to provide appropriate
care for children with any disability, and they heroically try
really. But if you made a decision that there was a private
center that your child would be particularly benefited by going
to instead of going to school, and you decided you were
prepared to fund that yourself, would you get any reimbursement
from the system at all for that today, even though it would
relieve a financial burden on the school system if you had sent
the child to the school?
Ms. Champion. I would probably need to work very
aggressively with the school system in accessing services
through an IEP, and quite frankly, would more than likely
involve some litigation on the part of trying to do that. I
think some come full circle in thinking that schools have been
given quite a bad rap in trying to provide services for
children that they consider seriously emotionally disturbed,
and I think more often that advocacy groups and family networks
need to reach out to school systems and provide a better
relationship with them, to go in and actually assist them in
providing a safe environment within the school system or an
alternate environment that is going to the school system
instead of parents going in and being very contentious in
trying to access services for their children.
I would say that in our State, I think that is beginning to
happen. Certainly with the school officials that we have had an
opportunity to talk with recently, they know that they cannot
handle this age, this population on their own and that it is
not going away. By just putting them into alternative schools
or boot camps, they are still coming back into the system with
the same issues, and they need to look at alternative ways in
approaching it.
NAMI has a very wonderful program called Parents and
Teachers as Allies that certainly needs to be looked at in
every school system, but I think that particularly in our State
we are going to try to reach across that bridge to school
officials and work more effectively with them, and quite
frankly, it is going to take a culture change.
Senator Sessions. I know you have been a leader in that,
and I thank you for it and the advice you have given me on it.
I think making it easier, Mr. Chairman, that a person could
use just a small amount of the money the school system would
have used for care for this child, plus their own. They may
have an opportunity to make a decision that could provide
really special care for a child, and it is pretty inflexible as
it is today. I think we can do better on that.
Thank you very much, and thank you for your leadership.
Senator DeWine. Thank you, Senator Sessions.
This has been a great panel. Thank you very much. We
appreciate all of you being here, sharing your experiences with
us. We intend to move forward. This subcommittee has two bills
that we have introduced. Senator Reed and I have introduced
one. Senator Dodd and I have introduced another bill. We hope
to move forward on this legislation. We also have taken from
you some very specific, several specific recommendations which
we would hope in the future to be able to move forward on. So
this has been a very productive meeting. Thank you very much.
[Additional material follows.]
ADDITIONAL MATERIAL
The Keeping Families Together Act (S. 1704)
Each year, thousands of parents are forced to relinquish their
custody rights to the State in order to obtain mental health care for
their seriously ill children. Services to treat severe mental disorders
in children can be extremely expensive and private insurance tends to
run out after a few months, leaving even middle class parents unable to
afford the cost. Yet affected children often remain ineligible for
Medicaid because their parents' income and assets keep them from
qualifying for assistance. With no other way to get their treatment for
their children, parents are forced to choose between custody or care.
The GAO reported in April that, in 2001, parents in 19 States placed
12,700 children in State welfare or juvenile justice agencies in order
to obtain mental health services for them. Moreover, that estimate is
considered low, because 31 States did not respond to the survey.
The Keeping Families Together Act seeks to keep these children with
their families and includes three main components:
family support grants to states
Authorizes $55 million in competitive grants to States that would
be payable over 6 years to create an infrastructure to support and
sustain statewide systems of care to serve children who are in custody
or at risk of entering custody of the State for the purpose of
receiving mental health services. These grants are intended to help
States serve these children more effectively and efficiently, while
keeping them at home with their families.
The Family Support Grants could be used to:
Foster inter agency cooperation and cross-system financing
among the various State agencies with responsibilities for serving
children with mental health needs. This will help to eliminate
fragmentation of services and will increase the capacity of agencies to
share public resources. States already dedicate significant dollars to
serving children in State custody, and this will enable them to use
those resources more effectively, while still allowing children to
remain with their families;
Provide a comprehensive array of community-based mental
health and family support services for eligible children and their
families that will be sustainable after the grant has expired;
Facilitate the design of a State plan through a
collaborative process involving State child-serving agencies, parents,
providers, and other stakeholders;
Provide outreach and public education programs to increase
awareness about the services that are available to eligible children
and their families;
Carry out administrative functions related to the programs
and activities carried out under the grant, including the development
and maintenance of data systems.
Requires States to provide matching funds over the 6-year period of
the program, ultimately equaling not less than $2 for each $1 of
Federal funds provided under the grant. States would also be required
to report annually, beginning with the second fiscal year in which a
State receives funding under a grant, on the progress and success of
the programs and activities carried out by the State under the grant.
Not later than 3 years after the date of enactment, and after the full
6 years of the grant, a report to Congress is required evaluating the
success of States in using the grants to eliminate the problem of
custody relinquishment.
Federal Interagency Task Force
Requires the Administrator of the Substance Abuse and Mental Health
Services Administration, acting in conjunction with the Director of the
Office of Juvenile Justice and Delinquency Prevention, the
Administrator of the Administration for Children and Families, the
Administrator of the Centers for Medicare&Medicaid Services, and the
Assistant Secretary of Education for Special Education, to establish a
Federal interagency task force to examine mental health issues in the
child welfare and juvenile justice systems and the role of their
agencies in promoting access by children and youth to needed mental
health services. The task force would also be charged with monitoring
the family support grants, making recommendations to Congress on how to
improve mental health services, and fostering interagency cooperation
and removing interagency barriers that contribute to the problem of
custody relinquishment.
allows states to use the medicaid home- and community-based waiver to
treat children with mental illness in less restrictive settings
Modernizes a critical Medicaid State waiver program by making
children and adolescents in residential treatment facilities, like
those in hospitals, eligible for home- or community-based services
under Medicaid, providing that the cost is no higher than that of
institutional care.
Prepared Statment of the American Academy of Child and Adolescent
Psychiatry
Introduction
The American Academy of Child and Adolescent Psychiatry (AACAP) is
a medical membership association established by child and adolescent
psychiatrists in 1953. Now over 6,900 members strong, the AACAP is the
leading national medical association dedicated to treating and
improving the quality of life for the estimated 7-12 million American
youth under 18 years of age who are affected by emotional, behavioral,
developmental and mental disorders. AACAP supports research, continuing
medical education and access to quality care. Child and adolescent
psychiatrists are the only medical specialty fully trained in the
treatment of mental illness in children and adolescence.
The AACAP thanks Substance and Mental Health Services Subcommittee
chairman, Sen. Mike DeWine (R-OH) for holding this important hearing,
and we applaud his continued commitment to increasing access to
treatment for children and adolescents with mental illnesses.
The Surgeon General's 2000 report on children's mental health
estimated that 20 percent of American children and adolescents have a
diagnosable mental or emotional illness. Of this number, fewer than one
in five receive treatment. Barriers to treatment include a lack of
affordability, lack of availability of specialists, including child and
adolescent psychiatrists, and stigma. Anxiety disorders, ADHD, and
depression are the most common mental illnesses occurring in children
and adolescents.
Early Intervention
The barriers to early identification and treatment are the critical
areas of focus for children and adolescents with mental illnesses. Five
studies funded by NIMH have consistently identified under-recognition
of mental illnesses as a major problem. Missed opportunities, because
of under-identification or no opportunity for identification,
translates into losing the option of early intervention. For children
and adolescents, an early diagnosis and adequate treatment may limit
the severity of a life-time disorder or minimize a less severe
disorder. After the option of early intervention is lost, the chain of
life-time devastation from mental illness looms ahead: school failure,
family crises, substance abuse, entrance into the juvenile justice
system, more and more costly interventions, and on into adulthood. The
President's New Freedom Commission on Mental Health listed the
expansion of early intervention services for children and adolescents
with mental illnesses as one of its main recommendations in its final
report, Achieving the Promise: Transforming Mental Health Care in
America. In the report, the Commission states, `` If the system does
not appropriately screen and treat them early, these childhood
disorders may persist and lead to a downward spiral of school failure,
poor employment opportunities, and poverty in adulthood. No other
illnesses damage so many children so seriously.'' The increased
availability and affordability of treatment will enable earlier
identification and interventions for children and adolescents with
mental illnesses.
Coverage
Today, approximately 85 percent of all privately insured families,
and a growing number of those covered by Medicaid, are in a managed
health care plan. Children are being enrolled in managed care plans at
a higher rate than adults and represent a disproportionately larger
number of managed care members. The current efforts to contain costs
increase the risk of compromises in the quality of care for a
population that is still growing.
One of the key barriers to treatment for children and adolescents
with mental illness is a lack of parity in insurance coverage for
mental illness. Discriminatory coverage, including limiting the number
of inpatient and outpatient visits, and higher copays and deductibles
for children and adolescents, is uniquely counterproductive. Reducing
treatment options contributes to missed school days, involvement with
the juvenile justice system or even suicide attempts. Too often, a
misperception of the cost of mental health coverage prevents access to
care, but the Congressional Budget Office (CBO) estimates that managed
nondiscriminatory mental health benefits will increase average premiums
by less than 1 percent the cost of the average benefit. The cost offset
of not treating a child with a mental illness will prove to be much
more expensive in the future.
Due to the risk-adjustment strategies to protect the financial
interests of managed care organizations, there is little incentive in a
managed care system to offer parity for services for children with the
most serious disorders. These children tend to be high service
utilizers and are often involved in multiple agencies. They pose a
challenge to managed care systems because they require services at
various levels of intensity for extended periods of time. These
children are then left underserved, resulting in shifting the
responsibilities for care to other systems such as special education,
child welfare or juvenile justice. Co-pays for children and adolescents
should not only reflect parity but should be set so moderately that
families seek early intervention, evaluation and treatment for mental
and physical illnesses without the fear of financial disaster. With
early intervention and treatment, children will live healthier,
productive lives into adulthood. When managed care systems deny
coverage to children and adolescents, an expedited appeals process
should be in place to resolve denials.
Coverage that Meets Developmental Needs
Children and adolescents are too often treated according to adult
standards. They are not little adults and need age-appropriate
treatment coverage that respects developmental needs. Accurate
comprehensive evaluations are more time consuming for children and
adolescents. This is recognized in the CPT manuals for interactive
psychotherapy. Health care plans should not limit the assessment of all
levels of neurological and behavioral development. There are current
pressures for child and adolescent psychiatrists to prescribe
medication without a full evaluation, which is not good medicine or an
efficient use of resources.
Most managed care systems for behavioral health have been designed
without input from a child and adolescent psychiatrist or family
members of children with serious emotional disorders. Most do not
understand the importance of strong links among the treatment, home,
and community environment. Services that support a system of care for a
child's treatment plan should not be denied automatically if they fall
outside the inpatient or outpatient benefit or be discriminated against
because the benefit is for a mental illness. Children and adolescents
with serious emotional disorders and their families need many kinds of
services from a variety of sources, such as schools, community mental
health centers, and social service organizations. Many managed care
systems are not yet coordinating these services that children with
serious emotional disorders and their families need, and, too often,
when the services are implemented, the coverage for their use is denied
and only partially covered.
Coverage, with parity, should include a full continuum of
treatment--including, but not limited to, preventive interventions,
early identification, assessment and diagnosis, case management,
outpatient treatment, partial hospitalization, home-based services,
detoxification and inpatient treatment. Treatment for children and
adolescents requires that services involve the child or adolescent and
family as well as appropriate collaboration with other significant
caregivers, teachers, physicians or providers of other needed services.
Access
The health system's denial of access to specialists, such as child
and adolescent psychiatrists for mental illnesses is a major concern.
Children and adolescents should have access to all providers in the
plan, with direct access to specialists with training in treating the
disorders of childhood and adolescence. Child and adolescent
psychiatrists are physicians specifically trained to treat children and
adolescents with mental illnesses. The denial of access to such
specialists can result in inadequate diagnosis and treatment of the
illness and delayed treatment.
Often children and adolescents are faced with discriminatory
coverage combined with their physicians being eliminated from the
provider networks. Continuity of care between a child and adolescent
psychiatrist and his/her patient is crucial to the well being of the
child. Trust between a doctor and patient is critical, and the
relationship between a child or adolescent and his/her psychiatrist
must not be compromised. When a child or adolescent is suddenly
required to change therapists, the trust and confidence that child
depends on is undermined, damaging the outcome of the treatment and of
future treatments.
Systems of Care
Currently, most State mental health, education, juvenile justice,
social service and child welfare agencies do not provide coordinated
treatment for children and adolescents with mental illnesses; although,
a number of federal laws and programs, including Medicaid and the
Individuals with Disabilities Education Act (IDEA) mandate
comprehensive coverage for low-income children, children in the child
welfare system and children with disabilities, including children with
serious emotional disorders. Differing eligibility criteria for
services and a lack of State mandates or funding streams contribute to
fragmentation of State service systems. This lack of coordination
across State service systems, coupled with the lack of parity in the
insurance system, has forced many families to consider the
unthinkable--giving up custody of their children to State child welfare
or juvenile justice agencies in order to access treatment for their
children.
No services should be denied that support a system of care for a
child's treatment plan. Children and adolescents should have direct
access to the services that support them and their families. A serious
emotional disturbance touches every part of a child's life. Therefore,
children and adolescents with serious emotional disturbances and their
families need many kinds of services from a variety of sources, such as
schools, community mental health centers, and social service
organizations.
Studies suggest that effective systems of care:
reduce the need for hospital and out-of-home residential
treatment placements;
improve how children behave and function emotionally;
improve school performance;
reduce juvenile involvement with the justice system; and
provide services to more children and families who need
them.
Model Systems of Care Program
The Substance Abuse and Mental Health Administration's (SAMHSA)
Comprehensive Community Mental Health Services for Children and Their
Families program is a model systems of care program for States. The
program is a discretionary grant and contract program that supports the
development of intensive community-based services for children and
their families based on a multi-agency, multi-disciplinary approach
involving the public and private sectors. Recent evaluation data found
notable improvements for children after 1 year of services in the
following areas: reduced law enforcement contact, improved school
attendance and academic performance, and improved emotional and
behavioral problems. The program currently funds 67 programs in 43
States and services a total of 46, 633 children and adolescents with
serious emotional disorders. The AACAP recommends an increased
appropriation for the SAMHSA's Children's Mental Health Services
Program so that it may be expanded to serve all States.
Medicaid Access
The Medicaid program provides low-income families with
comprehensive health care. Medicaid's Early, Periodic, Screening,
Diagnosis and Treatment (EPSDT) program mandates that all children
eligible for Medicaid receive comprehensive mental health treatment.
Despite this mandate, full implementation in all States has not
occurred, leaving many eligible children without access to the
comprehensive care they are entitled to by law. This is due to a lack
of parity for mental illnesses in State Medicaid systems, differing
State eligibility criteria and regulations, and a lack of coordination
between service systems. Allowing middle-income families of children
with mental illnesses to buy-in to the Medicaid program, for example
through the Katie Becket waiver currently available in the States of
Kansas, New York and Vermont, provides access to intensive treatment
services such as residential treatment centers for these families that
they would otherwise not be able to afford. Increased access to
Medicaid coverage for middle-income families and low-income families
who are ineligible for Medicaid because of family assets such as
ownership of a home, would remove one of the barriers to treatment for
these children and their families. The AACAP recommends passage of the
Dylan Lee James Act, S. 622 and H.R. 1822, to allow families of
children with serious emotional disorders to buy into the Medicaid
program.
Shortage of Children's Mental Health Professionals
A final barrier to treatment for children and adolescents with
mental illnesses is the lack of available specialists trained in the
diagnosis and treatment of these disorders. In particular, there is a
critical national shortage of child and adolescent psychiatrists. There
are about 7,000 child and adolescent psychiatrists nationwide while the
prevalence rate for children and adolescents with mental illnesses is
between 10 and 15 million. Data on this professional shortage comes
from several sources including the Surgeon General, the President's New
Freedom Commission on Mental Health, the Council on Graduate Medical
Education (COGME), a committee of the Department of Health and Human
Services and the Bureau of Health Professions. The Abt Associates
report for COGME concluded that by 1990, the Nation should have over
33,000 child and adolescent psychiatrists. The Bureau of Health
Professions projected that between 1995 and 2020, the use of child and
adolescent psychiatrists will increase by 100 percent, with general
psychiatry's increase at 19 percent. An increase in the numbers of all
children's mental health professionals can help reduce one of the
barriers to treatment for the families of children with mental
illnesses. The AACAP recommends congressional action in this effort,
including passage of the Child Healthcare Crisis Relief Act, S. 1223
and H.R. 1359, which would encourage individuals to enter all
children's mental health professions through the creation of education
incentives.
Conclusion
Children and adolescents in America, regardless of their family
income level, should have access to psychiatric treatment, which should
be provided on a nondiscriminatory basis integrated with other
necessary medical services. Services should include a full continuum of
treatment--including, but not limited to, preventive interventions,
early identification, assessment and diagnosis, case management,
outpatient treatment, partial hospitalization, home-based services,
detoxification and inpatient treatment. Treatment for children requires
that services involve both the child or adolescent, and family as well
as appropriate collaboration with other significant caregivers,
teachers, physicians or providers of other needed services.
Summary of Legislative Recommendations:
Enactment of the Paul Wellstone Mental Health Parity Act,
S. 486 and H.R. 953, sponsored by Sen. Domenici (R-NM) and Kennedy (D-
MA), and Reps. Kennedy (D-RI) and Ramstad (R-MN).
An appropriation of $140 million for SAMHSA's
Comprehensive Community Mental Health Services for Children and Their
Families program.
Enactment of the Keeping Families Together Act, H.R. 3309
and S. 1704.
Enactment of the Dylan Lee James Act, S. 622 and H.R.
1822, sponsored by Sens. Grassley (R-IA) and Kennedy (D-MA), and Reps.
Sessions (R-TX) and Waxman (D-CA).
Enactment of the Child Healthcare Crisis Relief Act, S.
1223 and H.R. 1359, sponsored by Sens. Bingaman (D-NM) and Collins (R-
ME) and Reps. Kennedy (D-RI) and Ros-Lehtinen (R-FL).
The AACAP appreciates this opportunity to submit a statement for
the record on issues throughout the developmental process for children
and adolescents with mental illnesses.
Attachment: Health Care System Leaves Mentally Ill Children Behind.
Boston Globe, March 26, 2004.http://www.boston.com/news/globe/health
science/articles/2004/04/27/health care ststem leaves mentally ill
children behind/
Prepared Statement of Michael Faenza
Mr. Chairman and Members of the Subcommittee: The National Mental
Health Association (NMHA) is the country's oldest and largest nonprofit
organization addressing all aspects of mental health and mental
illness. In partnership with our network of 340 State and local Mental
Health Association affiliates nationwide, NMHA works to improve
policies, understanding, and services for individuals with mental
illness and substance abuse disorders, as well as for all Americans.
Established in 1909 by a mental health consumer, NMHA's philosophy has
consistently been that the needs of consumers and communities must be
at the center of all policy and practice concerns in the mental health
field.
We applaud the careful work this committee is undertaking in
studying the many facets of mental health in this country. The subject
of your hearing today is critically important because children are
falling through the cracks of our ``mental health system,'' and those
cracks are widening. We welcome your focus.
As a society, we attach a high value to children's well-being. Yet
our country is failing children and adolescents by not addressing or
treating their mental and emotional health. We are failing because we
are not addressing the issues that keep children and adolescents from
receiving appropriate care: these include the limited access to
treatment and services; the fragmentation of services; the lack of
investment in prevention; the shortage of providers with sufficient
expertise; stigma of mental illness; and the failure to engage families
and children in mental health and substance abuse prevention and
treatment efforts. Sadly, even the limited research information we
possess about children's mental health is not being translated into
clinical practice. If we do not change this trajectory, we will
continue to foster a cycle of emotional and behavioral problems for our
children resulting in school failure, substance abuse, violence,
imprisonment, and most tragically, wasted lives that could have been
changed.
``Symptoms'' Compromising Quality of Care
While there are many serious problems in the mental health system
that cross the age span, a unique set of ``symptoms'' too often
compromise the quality of children's mental heath care. They include:
Requiring diagnosis prior to treatment. As noted by the
U.S. Surgeon General, due to the ongoing physical, emotional, and
cognitive development of children, it can be difficult to accurately
diagnose mental disorders. Premature or inaccurate diagnosis can result
in inappropriate treatment and labeling. In addition, a key aim of
children's mental health should be to address mental health problems
before they progress into conditions that meet the diagnostic criteria
for a mental disorder. Unfortunately, both public and private financing
mechanisms tend to require that a child be diagnosed prior to receiving
treatment.
Treating only ``ED children.'' Many public systems require
not only that a child have a diagnosis, but that the child meet the
diagnostic, durational, and functional requirements set by the State/
county for a ``serious emotional disturbance.'' In other words, systems
purposely avoid treating children until their condition reaches a point
where functioning is severely impaired.
Lack of child- and family-centered services. When
children's mental health needs are addressed at all, the system for
serving them is often treated as an extension of the adult system, and
as a result truly child- and family-focused service planning and
delivery is in short supply. In many cases, children with mental
disorders are not served at all by the mental health system, but end up
instead in other systems, such as juvenile justice.
Shortage of practitioners specifically trained in
children's mental health.
Too many children inappropriately placed in the juvenile
justice and child welfare systems due to lack of MH services for
children and families. Some families are even forced to relinquish
custody to these systems just to get MH services for their children.
Increasing numbers of children with emotional or behavioral disorders
are entering the juvenile justice system. Researchers estimate that
between 50-75 percent of youth in the juvenile justice system have
diagnosable mental health disorders; one in five has a serious
emotional disorder (ED). Correctional systems are simply not designed
to provide mental health services and are ill equipped to meet and
often even recognize the mental health needs of children.
Lack of prevention and early intervention.
This committee, in its oversight capacity and as an architect of
SAMHSA reauthorization legislation, has an opportunity to address these
problems, and make children's mental health and well-being the priority
it must be. We urge the Committee to make the needs of America's
children and youth with, or at risk of, mental disorders a major focus
of SAMHSA's authorizing legislation. We recommend that you develop
legislation that places major emphasis on high-quality community-based
mental health treatment services and prevention (to include screening,
preventive services and early intervention) of mental disorders in
children and youth.
Core Principles:
We believe the following core principles should shape the
development of that needed policy direction:
(1.) The promotion of good mental health, prevention and treatment
for children and youth with mental disorders is the responsibility of
every family, school, social service agency including child welfare,
law enforcement, and juvenile justice system.
(2.) Effective mental health services for young people are based
and administered in the communities where children and families live.
(3.) Parents, siblings and other caretakers are central to the
treatment of children with mental disorders, and should be seen as
critical partners and participants in every child or youth receiving
treatment.
(4.) In addition to specific centers or agencies that need to be
developed and funded to deliver community-based services for children
and youth with mental health needs, organizations that serve children
and families--including child welfare, juvenile justice and schools--
need adequate resources to screen and identify children and youth at
risk of increased mental health challenges.
(5.) Schools, child welfare agencies, and juvenile justice systems
need to provide preventive mental health services, identify and provide
basic services for children and youth who are screened and known to
have mental disorders, and work collaboratively with other community
organizations to ensure good outcomes for each child.
(6.) Many youth with mental disorders also have substance abuse
problems, and substance abuse prevention and treatment should work in
an integrated fashion with children and youth, not separately, for good
outcomes for children.
(7.) Children and youth are often the most adversely affected
individuals regarding the experience of living through any disaster,
witnessing or being exposed to violence, loss of family members, living
in poverty, having poorly met physical health care needs, and
experiencing acute medical problems. Community organizations that
address these issues need the resources to identify the mental health
needs of children and youth and ensure that appropriate treatment is
accessed.
Policy recommendations:
Building on those principles, we urge that a SAMHSA reauthorization
bill, and this committee's oversight of SAMHSA, address the following:
(1.) SAMHSA leadership must address the reality that mental health
services and preventive programs for children and adolescents are
scarce in number and poor in quality; given the magnitude of the need,
the situation could aptly be termed a national crisis.
(2.) Mental health services and prevention programs targeting the
needs of vulnerable children and families should be near the top of
SAMHSA's goals and investments in community.
(3.) Federal agencies including the Department of Education, Office
of Juvenile Justice and Delinquency Prevention, Maternal and Child
Health and other URSA programs, CDC, NIGH and Homeland Security should
all be linked formally and with clear charges to SAMHSA. SAMHSA needs
support and direction to move much more vigorously towards
collaborative planning and pooled resources with other Federal agencies
to meet the challenges to the mental health of children across the
United States.
(4.) Prevention resources within CMHS need to be greatly expanded,
and should be a public health cornerstone of the agency.
(5.) A fourth SAMHSA center that focuses on the promotion of mental
health and the prevention of mental disorders in children and youth, as
well as the risks and solutions for adults, is needed.
(6.) The Children's Mental Health Services Grant program
(hereinafter the ``Systems of Care'' program) within the Center for
Mental Health Services should have greater flexibility to meet the
needs of youth. We urge that you revisit eligibility rules that limit
program access to youth who meet the criterion of having a ``serious
emotional disturbance,'' and, as a result, too-frequently deny needed
services until a youngster's condition deteriorates.
(7.) The needs of children in communities who are at risk because
of traumatic events or disaster argue for a robust new Grant program
within SAMHSA.
(8.) A new Grant program to support community-based planning would
help move many more communities toward developing needed systems of
care.
The National Mental Health Association looks forward to working
with this Committee to make its vision for meeting the special needs of
children a reality for tomorrow.
Statement of Susan Mikolic, Parent & Advocate
Chairman DeWine and members of the Committee, I am Susan Mikolic of
Lake County, Ohio. I have two children with mental illness. My oldest
son, now 16, has been ill since age 5. His challenges include Bipolar
Disorder, Attention Deficit Disorder, Oppositional Defiance Disorder,
Post-Traumatic Stress Disorder, multiple medical problems, and several
learning disabilities. My youngest son, now 14, has been ill since age
6. His challenges include Bipolar Disorder, Attention Deficit Disorder,
Anxiety Disorder, multiple medical problems, and several learning
disabilities.
I am a registered nurse by education and experience. I have,
however, out of necessity, devoted the last 6 years to mental health
advocacy. Today I present to you as a very concerned parent and
citizen. It wasn't long after my children were diagnosed and I
attempted to access services that it became clear to me that a large
portion of the services my children needed didn't exist, or if they did
exist, were either of poor quality, ineffective, inaccessible, or cost
prohibitive. I rolled up my sleeves and got involved in an attempt to
make the system better for my children and all others to walk in their
footsteps. I served as President of National Alliance for the Mentally
III (NAMI) Lake County, member of the NAMI Ohio Board of Directors, Co-
chair of the NAMI Ohio Children's Committee, co-chair of the Ohio
Department of Mental Health Children's Division Strategic School
Success Committee, co-chair of the Professional Development work group
of the ``Mental Health, Schools, and Families Working Together Toward a
Shared Agenda'' Initiative, and countless other task forces,
committees, work groups, panels, and advisory groups. Due to the extent
of my involvement, visibility, and expertise I have become an
established advocate for childhood mental health issues, assisting
families around the entire State as they attempt to secure needed
services for their children.
I mention all this to provide a framework for your interpretation
of my testimony as I will not only relate my personal family
experience, but will also reflect those of struggling families all
around the State of Ohio. I will focus my comments primarily in the
area of middle-income families as this is my area of expertise and
experience.
I stated earlier that it became clear that the services my children
needed were either non-existent, poor quality, ineffective,
inaccessible, or cost prohibitive. I will expand.
1. High quality, effective, accessible, and affordable psychiatric
care--My children, and all these children, need high quality,
effective, accessible, and affordable psychiatric care for our
children.
As you know, there is a critical shortage of Child Psychiatrists. I
am blessed to live in Cleveland, a medical hub in the State of Ohio. We
have a large number of Child Psychiatrists, yet waiting lists remain at
3 months for an initial appointment, with many practices closed to new
patients. We are blessed. There are areas around the State and nation
that have few, if any, Child Psychiatrists. I see the initiative to
stem this gap with use of Pediatricians. This practice concerns me. As
a healthcare professional, it is clear to me that in this information
age one cannot know all there is to know in multiple specialties. Many
pediatricians have a special interest in Attention Deficit
(Hyperactivity) Disorder (ADD/ADHD), for example, and diagnose and
treat the child for ADHD with stimulants. Because they rarely are well
versed in the entire field of Child Psychiatry, they often miss co-
morbidities, as well as exacerbate other undiagnosed illness by
medication management. Specifically, I refer to the use of stimulants
and antidepressants, the use of which can unmask an underlying Bipolar
Disorder. Children are given stimulants for ADHD, and antidepressants
for Depression, Anxiety Disorder, and Obsessive-Compulsive Disorder,
and often no one is watching for a potentially emerging mania. Both of
my children were originally treated with antidepressants and mood
stabilizers for depression, anxiety, and ADHD, and both were triggered
into mania. Had they not been under the care of a Child Psychiatrist I
believe the mania would have been identified as the ``impulsiveness''
of ADHD and they would not have been appropriately diagnosed and
treated until some time later when untold health and social damage
would have taken place.
I will relate a personal experience where such a thing happened
even with the oversight of a Child Psychiatrist. My youngest son was
diagnosed with Bipolar Disorder. His Psychiatrist eliminated pediatrics
from her practice. It was too time-consuming. It was better for her
economically to only treat adults who didn't need interaction with
school systems, etc. We changed care to another local Child
Psychiatrist. He did not concur with the Bipolar Diagnosis and promptly
took my son off his mood stabilizer, remaining on antidepressants and a
stimulant. My son went into a manic mood swing shortly thereafter. He
was walking on the roof on one foot, was extremely activated, etc. When
notified that my son was walking on the roof the Psychiatrist
responded, ``Is that dangerous?'', saying my son was getting more
impulsive and increased his stimulant dose. Eventually he ended up on
triple the recommended dosage when I sought a 2nd opinion, where the
Psychiatrist looked at his mood charts and promptly concurred that he
indeed had Bipolar Disorder. If I did not know what mania looked like,
from having experienced with my other child, the mania would have
continued unchecked, indeed, exacerbated, by his medication management.
I hear stories like this all around the State. It is my personal
opinion that these children's illnesses need to be managed by a
psychiatric specialist.
Now, one decides their child needs to see a Child Psychiatrist.
They must next determine if that Psychiatrist is a provider on their
insurance panel. Most are not on all panels and now the family finds
that the pool of Child Psychiatrists available shrinks by perhaps 50
percent or more. Then the family calls to make an appointment with the
Psychiatrist only to BE scheduled 3 months out even though their child
is in crisis. One is then guided in the meantime to go to the Emergency
Room for any crisis situations. This is not a helpful option. The staff
in most Emergency Rooms are not adequately trained to assist with this
population. If indeed the child is admitted to a psychiatric hospital
based on the Emergency Room visit, which only occurs if the child is
actively homicidal or suicidal, the child only stays 3-5 days and is
discharged with poor follow-up care. Essentially hospitalizations are
non-productive in terms of helping stabilize a child.
In this area of discussion I will relate two personal experiences
to highlight some of today's realities.
We have a family history of 5 suicides. I took my son to the
Emergency Room hoping to have him hospitalized for his safety. He was
not admitted because he was not suicidal ``enough'' I ask you, if you
had a significant family history of suicide, your child has a personal
10 year history of profound depression and suicidality, and is now
actively suicidal, would you feel that suicidality is so measurable
that one's suicide risk could be nonchalantly dismissed?
I now relate another example of how Emergency Room care may be
used. My son's illness was increasingly unstable. At one point he
refused an appointment with his Psychiatrist due to this instability
and limited energy to make the trip to the physician's office. His
illness continued to escalate. I called his attending Child
Psychiatrist asking for an urgent appointment, a med change over the
phone, or some guidance. His Psychiatrist told me to take him to the
Emergency Room. I said that would do no good as he was not suicidal or
homicidal. She said, ``Yes, I know, but maybe if he waits in the
Emergency Room for 4 or 6 hours he will think twice about canceling an
appointment with me.'' My, what a cost-effective, compassionate, and
humane approach to a cry for help. We changed Psychiatrists.
Now, in the area of changing Psychiatrists I would like to address
an increasingly common complication. The parent who carries the family
health insurance changes jobs or the employer changes carriers, and,
the child's established Child Psychiatrist is not a provider on the new
insurance panel. One must then choose if they will self-pay or put
their child through the distress and care lag inherent in relaying
history and trying treatments already attempted, once again. In
addition, changing Psychiatrists is not equivalent to changing
orthopedists or pulmonologists. One has to build a relationship with
the Psychiatrist to trust them enough to share troubling symptoms.
Changes in the treatment team create excessive and unnecessary distress
as well as treatment delays as the new physician learns the patient.
2. Financial Burdens--Let's talk cost. If you stay with the child's
current Psychiatrist on a self-pay basis, you will pay $65-$150/hour.
Also, virtually all insurance plans limit the number of appointments
per year that are covered for psychiatric care. If your child has a
typical care schedule they will see the Psychiatrist once per month,
and their therapist once per week. This totals 64 appointments per
year, of which greater than 2/3 will be self-paid by the family. And if
they self-pay for an out of network psychiatrist that cost increases.
At one time our family paid $500/week out of pocket for psychiatric
care. Historically, for the last 11 years, our family has spent
$20,000-$25,000/year out of pocket on medical expenses. My husband and
I are college educated, professional people, earning good wages, but a
family cannot sustain bills like this on an ongoing basis. We took 3
home equity loans against our home and eventually could no longer
afford all the loan payments. Last fall we sold our home.
If my child had leukemia, we would not have lost our home, we would
not be broke. The lack of insurance parity creates an unconscionable,
unnecessary burden on families. It is truly a present day
discrimination as clear as lack of voting rights for women or the
historical discriminatory practices against minority populations. I
read somewhere a great analogy regarding this practice. I do not recall
where I read it and therefore cannot credit the author, but the author
noted that the illness of Parkinson's Disease is thought to be related
to a deficit in the neurotransmitter Dopamine and that Schizophrenia is
associated with abnormally high levels of dopamine. Yet Parkinson's
Disease is well covered under insurance plans and Schizophrenia is not.
The author suggests that this practice is as ludicrous as insuring the
right leg but not the left. This practice is plain and simple,
unadulterated discrimination and this country should be outraged at the
discriminatory nature of this practice.
But they aren't . . . and why not? I believe insurance parity has
not been achieved yet, in large part, due to misunderstandings and
stigma about mental illness. In our old neighborhood the children were
forbidden to play with my children because of their illness. This was a
professional, educated community. But they were afraid, out of a lack
of knowledge. They assumed mentally ill children were violent children.
For 10 years my children had no friends. The families would not even
acknowledge us if we said hello. We have to do better than this for our
children. We recently moved when we had to sell our home. My son is
trying to make friends in his new environment, which has truly been a
blessing in this one sense. He said to me last night, ``Mom, I can't be
myself. I want friends and if I act myself I won't make any friends. Do
you have any idea what it was like to not have any friends for 10
years. I don't want that again . . . so I pretend to be someone else
with them.''
The need for friends and to fit and to be accepted is at it's
strongest in the school environment. The children use what little
coping energy they have to try to fit in and be accepted. This leaves
little reserves to devote to education.
3. Educational Issues--School related issues are the number one
reason families call me for assistance. They are in tears, desperate to
find help. The biggest common denominator in this struggle has been the
lack of knowledge about mental illness among the school staff
interacting with our children as well as ingrained judgments about
children with mental illness. We, as most all parents of mentally ill
children, have been told that our child was just being lazy, refusing
to do work. Yes, on the most surface level this would be the
observation. But our children's struggles are much more complex than
that superficial assessment. My children are coping with extreme
emotion swings, concentration problems, attention problems, medication
side effects, poor sleep, and the list goes on. We need to ask, ``What
are the child's behaviors telling us? What do they need?'' and work to
meet those needs so that our children can involve themselves in
learning. One cannot learn when they are falling asleep from powerful
medication, when their thoughts are racing in a mania, when they have
entirely lost initiative from a depression. When children are in
exacerbations of their mental illness, they cannot access the general
education curriculum. Instead of providing accommodations to help our
children, we are repeatedly told by school staff that we are enabling
our children as they push our children beyond their limits and
sacrifice their health. I have repeatedly heard this scenario over and
over again in my advocacy work with families. And I have experienced it
first-hand throughout my children's school careers.
We have had to pay a Psychiatrist to come to a school meeting to
explain, in her words, ``that we are dealing with a situation where my
son is making a choice between `should I kill myself today' and
algebra.'' We had to bring the doctor because we, as parents, are not
believed when we inform the school of our children's challenges. We
have been offered a ``choice'' of home instruction Mon./Wed. and Tues./
Thurs. at 2:45 or 3. What if a parent's work schedule necessitated them
never being home from work prior to 5 p.m.? When I pointed out to the
school that this hardly reflected true choice, I was told again, ``You
have a choice. You may CHOOSE between Tues./Thurs. and Mon./Wed. And
you can choose either 2:45 or 3 p.m.'' That's hardly a variety of
choices. My son at one point could only handle 1 hour of home
instruction per day, but the district couldn't secure a tutor who would
tutor 1 hour/day 5 days a week. So his services were reduced to 1/hour
day twice a week.
As a more complete example of what our children are up against, I
will briefly describe the challenges our family fought when my oldest
son was in 7th grade. In the spring we met to plan his 7th grade
Individual Education Plan (IEP) with services in an Serious Emotional
Disturbance (SED) inclusion setting. Yes, plan for what 7th grade would
bring. However, none of the 15+ school personnel at that meeting
informed us how very different the structure of 7th grade would be,
requiring him to change classes for every class, 11 different
personalities to adjust to, 11 different sets of expectations, chaos in
the halls, gym and hall lockers. These things may seem insignificant to
a healthy adult, or even a healthy child, but for my child and most
children with mental illness, these are huge barriers. Again, I imagine
out of lack of knowledge, those at the IEP meeting felt these things
weren't worthy of mention. They were, however, to prove to be the
antecedent of my son's decompensation into suicidality and catatonia.
Fall classes began and within 2 weeks my son was identifying how
stressed and pressured he was feeling. I began to communicate with the
school about the need to reduce his stress and the need to access the
accommodations planned for in his IEP. At 1 month into school his Child
Psychiatrist was alarmed at the decompensation that had occurred in
just 1 month. She cautioned we must reduce his stress immediately. I
sent letters, notes, made calls, and had meetings with school personnel
as we tried to implement his IEP plan that allowed for him to return to
his SED class if he was feeling stressed or having a bad day. I asked
that the school use my son as his own barometer of what he could handle
for the day. He knows best how he is feeling. This suggestion was met
with disdain. I was ``called to the principal's office'' and told I was
enabling my son. I was actually supporting my son's survival strategy.
During exacerbations of his illness he cannot handle large groups of
people, sometimes any people at all. He was feeling very volatile and
was asking to accommodate his need for less chaos and stress. As I said
in a recent letter to our Special Education Director, ``If my child had
leukemia and was asking to go to the nurses office because he was
feeling nauseated, he would be escorted there--no questions asked--and,
with much empathy.'' At a minimum, my child should be able to state his
needs and have them honored. Instead, they labeled him and pushed him
relentlessly to go to inclusion classes. Eventually he became so
unstable, depressed, and suicidal that we had to remove him from
school. He was hospitalized twice that fall and was so severely
depressed he was unable to dress, talk, or leave the house. He slowly
emerged from the depression with the stress of school eliminated. He
returned to school the following spring to a self-contained SED class,
attending 3 periods of school a day. It took him 1/1/2/ years to return
to a full school day. He lost nearly 2 years of education because the
staff refused to believe that his disability was getting in the way of
his education and reduce his stress. Had his stress been reduced via
strategies agreed to in his legal IEP, it is likely this exacerbation
and 2 year recovery would have been avoided.
Another major challenge once there is agreement to provide
services, is that the type of services our children need are, for the
most part, unavailable. Our children need a therapeutic approach. Some
also need a behavioral approach, but that's just a portion of the
affected children. Most programs available to our children are
behavior-oriented programs. They are missing the mark. Our children
need therapy in their day. My son did transfer into a behavior-oriented
SED class. We placed him there because he needed a small group setting.
He does not need to be with SED kids all day, but that is the only way
to get him into a small group setting with the present menu of program
options. We do not design services for kids . . . we place kids into
existing programs. We as parents must pick the ``least of the evils''
among the ``programs'' offered. My son might just make it in a self-
contained SED class, but what he will achieve will not be ``school
success'' he will survive school.
Not only are our children not learning, but the stressors place on
the child by an uninformed educational system exacerbate their
illnesses even further. As the stressors continue their health
continues to decompensate . . . their illness becomes unstable. And
with every exacerbation the possibility of them returning to their
previous functioning level declines. So if they were operating at a 90
percent functioning level, then decompensated into another episode,
they may only return to a functioning level of 86 percent next time,
and so on the spiral goes, until 1 day we reach the current outcomes
detailed in the National Longitudinal Transition Study of Special
Education Students commissioned by Congress. The study was initiated in
1987 and completed in 1994. The study showed the following outcomes for
students with Serious Emotional Disturbance (SED).
41.7 percent of students with SED graduate from high
school
They earn a grade point average between 1.7-2.1
They earn an average of 2.1-3.0 credits per year.
In Ohio a child needs to earn 21.5 credits to graduate from high
school. At this credit rate it would take a typical SED child 7-10
years to complete high school. And we wonder why they don't graduate
from high school?
Post-graduation statistics showed that at 3-5 years post-
graduation:
Less than half were competitively employed (47.4 percent)
A little less than half were already mothers (48.4
percent)
More than half were already arrested (57.6 percent)
Nearly half were living with their parents (45.4. percent)
4. Recommendations--Clearly, our nation needs to do better for this
vulnerable population than this. I implore you to search your souls. Be
afraid of mental illness if you need to. But do the right thing. I
think a great deal of stigma is related to fear that these tragic
illnesses might strike one's own family. And indeed they often do. One
in 4 families are affected by mental illness. It will strike someone
you know and love and all of this could happen to them. PLEASE stop
this atrocity today. Search your souls and roll up your sleeves. Make
changes to this horribly broken system that is as much a tragedy as the
children's and families struggles themselves. Make a difference for
future generations. In the ``The Report of the Surgeon General's
Conference on the Children's Mental Health: A National Action Agenda''
released January 3, 2001 David Satcher states, quoting The World Health
Organization, that ``by the year 2020, childhood neuropsychiatric
disorders will rise proportionately by over 50 percent to become one of
the five most common causes of morbidity, mortality, and disability
among children.'' The time is now. If we don't change this, who will?
So, what do we need to do? First and foremost, what is critically
needed, yesterday, is a national educational media blitz. Every mental
health board, mental health agency, advocacy group, etc. knows this
needs to be done, but it is expensive. No groups budget can handle the
cost of this initiative alone. It is done for AIDS. It is done for drug
abuse. It is time to do this for mental illness. Once people understand
that mental illness is like any other illness, other changes will fall
into place naturally. Many of this countries citizens are wealthy.
Every day they donate millions of dollars to museums, parks, and other
assorted groups. The money is out there. It's just that mental illness
is not yet identified as a worthy recipient for a variety of reasons.
But information, education, splashed everywhere, will open eyes. We
know that. It happens time and time again. If you do nothing else, help
this country establish an anti-stigma campaign. A lot of the rest will
fall into place then. Parity will occur because people will understand
that is the only right and decent thing to do. College students will
see the need and the rewards of pursing a career in Psychiatry.
Teachers will approach children with compassion. The tasks to improve
the system will all be easier.
Goal 1 of the President's New Freedom Commission Report clearly
states this recommendation as follows: Recommendations 1.1: Advance and
implement a national campaign to reduce the stigma of seeking care and
national strategy for suicide prevention.
Recommendations 1.2: Address mental health with the same urgency as
physical health.
Secondly, school issues for children with mental illness need to be
addressed immediately. Changes will only be made through collaboration.
These are complex inter-system issues. Collaborative projects need to
be supported. In the Ohio ``Mental Health, Schools, and Families
Working Together Toward a Shared Agenda'' initiative, the mental
health, educational, and family/advocacy communities are uniting to
make a difference. We can only make this very complex system effective
if we unite. Education about childhood mental illness for all teachers,
on an preservice and in-service basis, is essential. The education
community cannot know how to help our children unless they are educated
on how to do this. Mandatory education on how to support academic
success for children with mental illness is crucial.
The President's New Freedom Commission was charged to ``make
recommendations that would enable adults with serious mental illnesses
and children with serious emotional disturbance to live, work, learn,
and participate fully in their communities.'' \1\ Please help to assure
that the recommendations in that report are enacted. Our children, your
children, will thank you.
---------------------------------------------------------------------------
\1\ Report of The President's New Freedom Commission on Mental
Health, July 22, 2003
---------------------------------------------------------------------------
5. Conclusion--Chairman DeWine and Members of the Committee, I
thank you for the opportunity to share my views on this important
issue. And I stand ready to serve and work with you as you move forward
on your work.
In closing I would also like to add that I have attached an
addendum to this testimony. It is a newspaper article that appeared in
the Cincinnati Enquirer on Sunday, March 21, 2004. The Enquirer ran a
special report on Childhood Mental Illness. My family and it's story
was one of the families highlighted in that report.
everything spent, and no help
mother fights to save her bipolar sons
by debra jasper and spencer hunt enquirer columbus bureau
After 14-year-old Matthew Mikolic chased his younger brother with a
knife, his mother asked Lake County officials to pay to send him to a
psychiatric center. They refused.
``They said he wasn't violent enough, that he had only tried to
kill his brother once,'' Susan Mikolic says.
Now, the Eastlake, Ohio, mom lives in fear that next time, Matthew,
who is now a 220-pound, mentally ill 16-year-old, will succeed. She
hides tools and poisonous household cleaners in a locked fishing tackle
box in the garage. She started locking up kitchen knives after Matthew
tried to stab Brian, then 12.
``Brian locked himself in the bathroom, called me and said, `Get
home, Matthew's got a knife and he's trying to kill me,'' Mikolic, 44,
recalls.
``I called the police, and a whole SWAT team came. By the time I
got there, Brian was crying in the driveway, and Matthew had his hands
in the air.''
Mikolic sought help from the county because she had no money left
for more care. When her insurance ran out, she sold her $287,000
suburban home to cover treatment for both of her sons, who have bipolar
disorders that cause them to swing from overly hyper to depressed or
violent.
At first, the boys needed weekly counseling, but insurance only
covered half the cost of 20 sessions with a psychiatrist a year at $125
each per child. Eventually, Mikolic and her husband were shelling out
more than $20,000 a year for family therapy. They took out three home
equity lines of credit to pay for treatments, including lightbox
therapy, music therapy, and anti-psychotic drugs.
For Mikolic, the pressures finished off her marriage and forced the
couple to sell their home to pay off their loans. In the end, she was
left with just enough to put a small downpayment on a modest white
house that needs a $3,000 roof.
She also developed diabetes and such deep depression that she could
no longer work as a nurse.
``It was a process of letting go, selling the house, the furniture,
everything,'' she says. ``I've had relatives look at me and say, `How
could you lose your home, your husband, your job?' And I say, `Where
would you have stopped? What would you do to save your kids?' ''
Mikolic says what happened to her shows just what families with
mentally ill children are up against. She and other advocates are
pushing Ohio lawmakers to pass a bill that would force insurance
companies to cover a mental illness in the same way they cover a
physical illness.
If her sons had leukemia, Mikolic reasons, she wouldn't have had to
sell her home. ``Why should it be different for us because they are
bipolar?'' she asks.
Roberta Barb, an administrator of child protection services in Lake
County, says her agency opted not to send Matthew to a treatment center
because, ``As a group, we decided he was not in need of placement. We
can't make everybody happy, and we're not placing a kid in treatment
just because a parent believes he needs to go.''
The teen has tried everything to get his emotions under control,
even shock treatments that applied electric jolts to his brain. So far,
nothing's worked. He refused more shock treatments after he was given
two drugs during a procedure--one to paralyze him and one to put him to
sleep. The drug to paralyze him took effect first.
``I could hear the machine start, but I couldn't tell them I was
awake,'' Matthew says. ``I kept thinking, I should put my hand up, but
I couldn't. It was scary. Once they started the procedure, I didn't
know if I'd feel it.''
He's frustrated, but grateful for his mom for refusing to give up
on him. ``If it weren't for her, I'd be dead. If she didn't support me,
I would have killed myself.''
He pauses and lowers his voice.
``The illness puts that in your head,'' he says. ``People say you
can control it, but I don't think so. I know I can't control it.''
[Whereupon, at 11:48 a.m., the subcommittee was adjourned.]