[Senate Hearing 108-169]
[From the U.S. Government Publishing Office]
S. Hrg. 108-169
NOWHERE TO TURN: MUST PARENTS RELINQUISH CUSTODY IN ORDER TO SECURE
MENTAL HEALTH SERVICES FOR THEIR CHILDREN?
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HEARINGS
before the
COMMITTEE ON
GOVERNMENTAL AFFAIRS
UNITED STATES SENATE
ONE HUNDRED EIGHTH CONGRESS
FIRST SESSION
__________
JULY 15 AND 17, 2003
__________
Printed for the use of the Committee on Governmental Affairs
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WASHINGTON : 2003
____________________________________________________________________________
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COMMITTEE ON GOVERNMENTAL AFFAIRS
SUSAN M. COLLINS, Maine, Chairman
TED STEVENS, Alaska JOSEPH I. LIEBERMAN, Connecticut
GEORGE V. VOINOVICH, Ohio CARL LEVIN, Michigan
NORM COLEMAN, Minnesota DANIEL K. AKAKA, Hawaii
ARLEN SPECTER, Pennsylvania RICHARD J. DURBIN, Illinois
ROBERT F. BENNETT, Utah THOMAS R. CARPER, Deleware
PETER G. FITZGERALD, Illinois MARK DAYTON, Minnesota
JOHN E. SUNUNU, New Hampshire FRANK LAUTENBERG, New Jersey
RICHARD C. SHELBY, Alabama MARK PRYOR, Arkansas
Michael D. Bopp, Staff Director and Counsel
Priscilla Hobson Hanley, Professional Staff Member
Joyce A. Rechtschaffen, Minority Staff Director and Counsel
Patrick J. Hart, Minority Professional Staff Member
Amy B. Newhouse, Chief Clerk
C O N T E N T S
------
Opening statements:
Page
Senator Collins.............................................. 1, 43
Senator Durbin............................................... 22
WITNESSES
Tuesday, July 15, 2003
Hon. Patrick J. Kennedy, a Representative in Congress from the
State of Rhode Island.......................................... 4
Hon. Fortney ``Pete'' Stark, a Representative in Congress from
the State of California........................................ 6
Theresa Brown, Westbrook, Maine.................................. 10
Cynthia Yonan, Glendale Heights, Illinois........................ 12
Patricia Cooper, Fayetteville, Arkansas.......................... 15
Trina W. Osher, Coordinator of Policy and Research, Federation of
Families for Children's Mental Health, Alexandria, Virginia.... 26
Tammy Seltzer, Staff Attorney, Bazelon Center for Mental Health
Law, Washington, DC............................................ 29
Jane Adams, Executive Director, Keys for Networking, Topeka,
Kansas......................................................... 32
Thursday, July 17, 2003
Cornelia M. Ashby, Director, Education, Workforce, and Income
Security Issues, U.S. General Accounting Office................ 45
Charles G. Curie, Administrator, Substance Abuse and Mental
Health Services Administration, U.S. Department of Health and
Human Services; accompanied by Susan Orr, Ph.D., Associate
Commissioner, Children's Bureau in the Administration on
Children, Youth and Families, Administration of Children and
Families, U.S. Department of Health and Human Services......... 53
J. Robert Flores, Administrator, Office of Juvenile Justice
Delinquency Prevention, U.S. Department of Justice............. 57
Alphabetical List of Witnesses
Adams, Jane:
Testimony.................................................... 32
Prepared statement with attachments.......................... 115
Ashby, Cornelia:
Testimony.................................................... 45
Prepared statement........................................... 136
Brown, Theresa:
Testimony.................................................... 10
Prepared statement........................................... 81
Cooper, Patricia:
Testimony.................................................... 15
Prepared statement........................................... 90
Curie, Charles G.:
Testimony.................................................... 53
Prepared statement........................................... 170
Flores, J. Robert:
Testimony.................................................... 57
Prepared statement........................................... 178
Kennedy, Hon. Patrick J.:
Testimony.................................................... 4
Prepared statement........................................... 75
Osher, Trina W.:
Testimony.................................................... 26
Prepared statement........................................... 94
Seltzer, Tammy:
Testimony.................................................... 29
Prepared statement........................................... 100
Stark, Hon. Fortney ``Pete'':
Testimony.................................................... 6
Prepared statement........................................... 78
Yonan, Cynthia:
Testimony.................................................... 12
Prepared statement........................................... 87
Appendix
Prepared statements submitted for the Record from:
Lex Frieden, Chairperson, National Council on Disability..... 194
Katina Paron, Program Director, Children's PressLine......... 212
Richard C. Birkel, Ph.D., Executive Director of NAMI, on
behalf of NAMI--National Alliance for the Mentally Ill..... 214
American Academy of Child and Adolescent Psychiatry.......... 221
Joseph F. Ewa, M.D., P.C., Child Psychiatrist, Executive
Director, Child Adolescent, and Adult Counseling Services.. 230
NOWHERE TO TURN: MUST PARENTS RELINQUISH CUSTODY IN ORDER TO SECURE
MENTAL HEALTH SERVICES FOR THEIR CHILDREN? PART ONE: FAMILIES AND
ADVOCATES
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TUESDAY, JULY 15, 2003
U.S. Senate,
Committee on Governmental Affairs,
Washington, DC.
The Committee met, pursuant to notice, at 9:35 a.m., in
room SD-342, Dirksen Senate Office Building, Hon. Susan M.
Collins, Chairman of the Committee, presiding.
Present: Senators Collins, Pryor, and Durbin.
OPENING STATEMENT OF CHAIRMAN COLLINS
Chairman Collins. The Committee will come to order. Good
morning. This week, the Committee on Governmental Affairs is
holding hearings to examine the difficult challenges faced by
families of children with mental illnesses.
Serious mental illness afflicts millions of children and
adolescents. It is estimated that as many as 20 percent of
American children under the age of 17 suffer from a serious
mental, emotional, or behavioral illness. Of these, nearly half
have a condition that produces a severe disability that impairs
the child's ability to function in day-to-day activities. What
is even more disturbing is the fact that two-thirds of our
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 that it can to help a son or daughter
with a serious mental illness to be just like every other kid,
to develop friendships, to do well in school, and to get along
with their siblings and 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. As a consequence, the mental health and support
services that these children and their families receive are
often uncoordinated, inconsistent, intermittent, insufficient,
and for some, almost completely non-existent.
Recent news reports in more than 30 States have highlighted
the difficulties that parents of children with serious mental
illness have in getting the coordinated mental health services
that their children need. My interest in this issue was sparked
by a compelling series by Barbara Walsh of the Portland Press
Herald last summer. She detailed the many obstacles that Maine
families had faced in getting care for their children.
I have learned that 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 the juvenile justice
system.
When a child has a serious health problem like diabetes or
a heart condition, the family turns to their doctor. But when
the family includes a child with a serious mental health
problem, it is often forced to go to a child welfare agency or
to court to secure treatment. 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 and to prevent such acts from occurring.
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.
In some extreme cases, families are actually forced to file
charges against their own child or to declare that they have
abused or neglected them in order to get the care that they
need. As one family advocate observed, ``Beat them up, lock
them up, or give them up,'' characterizes the choices that some
families face in their efforts to get the help that their
children need.
While no one knows the exact number, child advocates
estimate that one in five families with mentally ill children
in the United States has surrendered custody in order to
receive care for a child with bipolar disorder, schizophrenia,
depression, or another serious disorder. Moreover, many child
welfare systems make no distinction between children who have
been given up in order to qualify for mental health care and
those who have been removed from their homes because of abuse
or neglect.
These children come from all walks of life and from every
income level. In fact, we found that children from middle-
income families are likely to be particularly vulnerable
because their parents make too much money to be eligible for
Medicaid and yet they simply do not have the funds necessary to
pay for care once their private insurance coverage runs out.
One outpatient therapy session can cost more than $100, and
residential treatment facilities can cost $250,000 a year or
even more. Since many private health plans have coverage that
is more restrictive for mental illness than it is for physical
illness, these families must pay for most of these costs out-
of-pocket. That clearly is far more than all but the very
wealthiest families can afford.
While some States have passed laws to limit or prohibit
custody relinquishment, simply banning the practice is not the
answer. That could leave mentally ill children and their
families without any services or care at all. Custody
relinquishment is merely a symptom of a much larger problem,
which is the lack of available, affordable, and appropriate
mental health services and support systems for these children
and their families.
The hearings that the Committee is holding this week will
provide an overview of the problem and examine the barriers
that prevent families from accessing mental health services.
The Committee will also hear about innovative programs in some
States, such as Kansas, that may help to improve access to
services for these families and reduce the need for child
welfare and juvenile justice placements.
Today, we are honored to first hear from Representatives
Fortney ``Pete'' Stark and Patrick Kennedy, who joined me in
requesting a General Accounting Office study of this issue.
We will also hear from those who are living with this
challenge day in and day out, the families who have faced these
tough choices as they have struggled to get the mental health
care that their children need, and I am particularly
appreciative of the testimony that we will hear today from
three mothers who will tell us of their personal experience.
Finally, we will hear from advocates for these families who
will give us an overview of the problem and make
recommendations for improving the current system.
On Thursday, we will continue these hearings with testimony
from the General Accounting Office. We will also examine the
roles of various Federal agencies and programs that have
responsibilities for children with mental health needs, and we
will examine the extent to which these agencies work together
to meet the needs of these children.
My hope is that these 2 days of hearings will pave the way
for legislative and administrative reforms at both the Federal
and State level to reduce the barriers to care for children who
suffer from mental illness.
I am very pleased today that we are joined by two
distinguished members of the House of Representatives who have
been leaders in dealing with this very serious problem. We are
hopeful that by working together in a bipartisan, bicameral
manner, that we will be able to come up with solutions that
make a real difference in the lives of mentally ill children
and their families.
First, I would like to welcome Congressman Stark of
California. As the Ranking Member of the Ways and Means
Subcommittee on Health, Congressman Stark has been working to
improve access to mental health services for children for a
number of years.
Next, we will be privileged to hear from Congressman
Patrick Kennedy of Rhode Island, a fellow New Englander whom I
am very pleased to welcome. We always like to think that New
England leads the way on issues that affect our Nation's
families. Congressman Kennedy serves on the House
Appropriations Committee, where he has continued to advocate
for more resources to be devoted to mental health care.
I mentioned that I was pleased to join the two
representatives in commissioning a GAO study, which has been
very illuminating in shining a spotlight and giving us some
data on the extent of this problem.
Congressman Stark, we will begin with you, and thank you
both for being here with us.
Mr. Stark. Madam Chair, if you would please, I would like
to yield to Congressman Kennedy, who has a markup scheduled
ahead, if that would suit you, and let him proceed.
Chairman Collins. My staff just passed me a note after the
fact---- [Laughter.]
Telling me that I should have called on Congressman Kennedy
first, and you are very gracious to allow him to proceed.
TESTIMONY OF HON. PATRICK J. KENNEDY,\1\ A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF RHODE ISLAND
Mr. Kennedy. Thank you, Madam Chairwoman. I just want to
thank my colleague, Congressman Pete Stark, who has been such a
champion over the years for health care reform and ensuring
that our health care system actually becomes a health care
system and not a sick care system, which it currently is, and
where we, unfortunately, spend too much of our resources on the
back end rather than on the front end where we could more
effectively address many of our health care needs of our people
in this country, and also more efficiently on a cost side,
effectively treat our people. I want to thank him for his
leadership on this.
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\1\ The prepared statement of Mr. Kennedy appears in the Appendix
on page 75.
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Madam Chair, you said it all in your statement. I really
can't do much better than what you articulated in your opening
statement. I know, as you said, the panelists who are going to
be speaking can more eloquently address this issue because they
can address it from personal experience, being a parent of a
child that is caught up in this bureaucratic system that sorely
needs change.
We have a callous system in this country when it comes to
children and mental health services. Mental health is physical
health. I often get concerned when I have to talk about it as
if it is something separate from overall physical health. We
have been so accustomed to delineating a change that is not
there. It is irrelevant. The brain is part of the body, in case
anyone didn't notice. We have got to worry about a check-up
from the neck up, as I like to say, as much as anything else,
because all we do on our health care side is neglect really an
organ of the body that affects every other organ of the body.
And why, as a Nation, we spend, for example, at NIH, only
$5 of every $100 we appropriate to the NIH on mental illness--
that includes all neurological disorders, including alcoholism
and substance and chemical abuse--unbelievable to me,
unbelievable. And why, as a Nation, we don't step up and
address this problem is beyond me.
I applaud you, Madam Chairwoman, for your interest in this
issue and your leadership in this issue because I think it is
long past due and we need to address this. And children and
families are suffering. As a Nation, we do a lot, as you know,
Madam Chairwoman, standing up here and saying how we are for
children and we wear these ties with children on our ties and
we all talk about how we are for families and family-friendly
policies, and yet, when it comes to our actions, we are missing
in action. This Congress and this administration is missing in
action.
The administration's own commission, the New Freedom
Commission, says our mental health system is in shambles, is in
shambles. I think the most effective way for us to address this
is to pass legislation that will include parity for mental
health care in our overall insurance system.
As you said, Madam Chairwoman, we have a bifurcated system.
In one, we have reimbursement for mental illness, which is far
below reimbursement for every other physical illness, and it is
just discriminatory. We wouldn't, as you know, say to
asthmatics, well, we don't value your illness so we are not
going to reimburse you for asthma, or if you have diabetes,
forget about it. We don't value that. We are not going to
reimburse it. This is just patently discriminatory.
The most effective way we can address this problem is pass
parity, and I know, as you know, Madam Chairwoman, that Paul
Wellstone dedicated his life to this in this chamber, made an
enormous difference, and we would do well if we in the Congress
passed the Paul Wellstone Mental Health Parity Act. That would
bring a systematic approach to this. Where we are failing now
is we are dealing with this in kind of picking up the threads
instead of addressing it all together. We need a comprehensive
approach, and the best way to address that is to get a
comprehensive solution, and that is mental health parity.
Short of that, what can we do administratively? I know this
is about getting things done, and we want to address this in
whatever way we can. I believe there is money in the system. I
think that we have a special education system, a juvenile
justice system, a health care, HHS system, and, of course, all
of the mental health that we have in our mental health systems
in our States. We can address this. It is just that all of our
funding streams, as you know, Madam Chairwoman, are isolated.
I can tell you, we have in our State $248 million--it is a
small State--$248 million a year for DCYF, Department of
Children, Youth, and Families. That is one of the biggest
expenditures we have as a State. We are spending oodles of
money on the back end. We are spending money in such
ineffective, inefficient ways. When you consider the additional
dollars, $100,000 to keep a child in our children's
correctional system, it is just foolish. We can spend our money
so much more effectively.
What we need are systems of care. We need to make sure that
the mental health folks and the Department of Health folks and
the education folks and the judiciary folks can't say, this is
my money. We have got to make sure that this is the child's
money. This is the family's money. This doesn't belong to you
and you don't say that this is, oh, this is just the juvenile
side or this is just the special education side or this is just
the education and this is just the health care side. This is a
comprehensive pot of money that we need to insist upon. We
can't have these stovepipe funding streams, as you know.
I will tell you, a lot of my folks who are involved in this
area have said to me, ``Congressman, you know what? There is
too much turf war in this.'' There are too many organizations
that are all trying to take their piece of the pie, and in the
midst of that are the children who we are trying to spend the
money on who are losing.
I just want to conclude by saying you are going to have a
great panel, but Jane Adams has been someone who I have relied
on for support on this issue from Kansas. As you pointed out,
that is one of the models in this country. We need to listen to
folks like her and the folks that you have on the panel because
they can give us the best direction as to what to do on this
issue.
I thank you for your interest and your leadership on this
issue.
Chairman Collins. Thank you very much, Congressman. I am
pleased to excuse you at this time so that you can get to your
markup----
Mr. Kennedy. Thank you.
Chairman Collins [continuing]. And thank you for taking the
time to be with us.
Mr. Kennedy. My pleasure. My pleasure.
Chairman Collins. Congressman Stark, it is an honor to have
you here this morning.
TESTIMONY OF HON. FORTNEY ``PETE'' STARK,\1\ A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF CALIFORNIA
Mr. Stark. Thank you, Senator. It is a particular joy to be
here having just returned from a weekend at the Migis Lodge at
Sebago Lake investigating welfare problems, and I can tell you
that as far as I could tell, Maine has no problem in that
particular location. [Laughter.]
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\1\ The prepared statement of Mr. Stark appears in the Appendix on
page 78.
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But, if the State that I represent happens to have also two
Senators who happen to be women, and if they were as well liked
and as well known in California as you are in Maine, they would
have no problem at all every 6 years. Let me say, it is a
special honor to be here today and to say what a great State
you represent, and also what a good job you are doing in
focusing on this problem which gets, as my colleague,
Congressman Kennedy indicated, kind of scattered to the wind.
Everybody wants a piece of it, and I think you are taking
the lead in trying to depoliticize this and bring some calm and
focused attention to what we can do here at the Federal level
to help the States deal with it. Many States, Kansas, Vermont,
have programs that are exemplary. What I suspect you are trying
to do, and I would like to help, along with Congressman Kennedy
and others in the Senate, is to bring some focus and direction.
I have been here long enough to remember that we had a
problem years ago with what we then called AFDC, and we used to
have fathers who used to have to leave home and abandon their
children in order for them to qualify for public assistance,
and they might have been poor or ineligible, and we suddenly
woke up and said, that isn't right. The father just doesn't
make enough to support the children well and we ought to deal
with that. Eventually, we did, and we came into the 20th
Century early on.
You know about the GAO report that we all requested and the
number of children, and you are going to hear from witnesses, I
know, who will tell you much more eloquently than I can what
many of the problems are.
But some of the practical problems that the public may not
realize and for our bean counters who always wonder how much
money we are going to spend, I think it is interesting to note
that about two-thirds of the children where custody has been
relinquished are boys, and they tend to get big and strong and
they tend to get around 15 or 16 and can be literally a
physical threat to peers, to parents, to themselves, and get
pushed, therefore, into what in California we would call the
youth criminal justice system. That is not an answer. That just
throws them in with people who are perhaps criminals, and that
is not the kind of training they need.
It also seems that once children get into these systems,
whether it is a combination of criminal justice or whether it
is a youth system run by the States, they tend to stay there.
Then, they are institutionalized for many, many years. The
record shows that if a youngster is institutionalized before he
or she is 20, the odds are they will spend half of the next 30
years of their lives in an institution. So if they go into a
system into which they are mandated by the court and
institutionalized, the odds are that from the age of 20 to 50,
they will spend half of that time as a ward of the State or in
jail or some other system. That costs us, in California,
$40,000 a year.
If you just want to look at the pure numbers, to the extent
that we can stabilize young people and make them part of a
family that is responsible for them and will love them and will
maintain them, we are doing good work. How we best can achieve
that is something that I know your staff has been working
diligently, with others to craft some legislation that will
help us move toward that.
Congressman Kennedy spoke eloquently about parity, and I
would join in his support for that issue. But that deals only
really with people who have health insurance. If it is adequate
on the acute care side, parity will, indeed, help out with the
mental health side, and that would take care of a segment of
the population. But that is diminishing. The number of people
with health insurance is diminishing. The value of their
benefits is dropping as we have employment problems, and so we
can't count on it. It will help.
Then we have to deal with Medicaid eligibility. That is
another segment of the population, and that varies from State
to state and what kind of benefits are available there. That is
the very lowest of the low income. Then you have sort of people
in between. You will hear from a witness today who, while being
unable to work, I think failed to qualify for Medicaid because
of the assets test.
All of these things are a hodgepodge of roadblocks, the
unintended consequence of which is that children are
institutionalized and parents are required to do that, to give
up custody, both harming the child--the child feels abandoned
in many cases--and I am sure the parents feel guilty. Both of
those feelings can lead to a diminution of the parent-child
relationship which I think, as a lay person, is invaluable to
the stable, healthy maturation of a child into becoming an
adult who fits into our adult society comfortably.
So that is what we are faced with. I know that in the bill
that we are working on, we are talking about some money to the
State, a reward. I don't think that we can intrude on the 50
States and say, you have got to run your welfare system this
way or that way. I think the attitude that we are seeing is,
yes, there is a carrot approach here and we are moving. To get
some of this award to help you integrate your social services
systems for children, one thing you have to do is stop, change
your State law on custody relinquishment.
That seems to be the barrier that the States will have to
hurdle. It should be easy. Every State that I know of is in
great financial trouble and I think just dangling out what will
be a small amount of money, but not insignificant, will go a
long way toward getting the States to do, in whatever way they
see fit, to proceed to deal with the custody relinquishment.
We also want to increase access and capacity, screening,
services at schools, in public health departments, in welfare
departments, and in the criminal justice system. All of these
people are operating in little empires or little worlds,
unaware of what is going on in the other's world. To coordinate
that is to come into basically the 21st Century. Actually, it
is the 20th Century. We have known that the Family Preservation
Act, which is now, 10 or 15 years old, has encouraged welfare
departments to move housing, food, child care, all of those
things into one system to help a family survive economically.
We can create a system to deliver to eligible children a
combination of home and community-based health systems, and all
of that, it seems to me, will be through encouraging States to
do that, and I know we have discussed giving States broad
ability to use the funds to create State and local-level
infrastructure and to expand public health insurance and
deliver mental health care and wrap-around support, as we call
it, to eligible children.
Also Outreach, letting people know that there is a problem
and that some children aren't just always a behavior problem.
Sometimes there really is an underlying health problem that
should be addressed and studied and identified.
So that is the problem before us, and I think working
together, with the help we get from the advocacy community and
without threatening our colleagues that we are going to try and
bust the budget, we don't need to do that. We need to focus
attention. I think we do. I think that providing some
enticement--I hate to call it a bribe, but some inducement to
the States to coordinate will go a long way, and I am just so
pleased that you are taking the lead on this.
We want to work with you. I hope we can rally as much
support in the House and we wait for your introduction of a
completed bill. It is not easy, I know, to get this all into
legislative language, but we will continue to try and help you
in every way we can and look forward to seeing some great
accomplishments in this year.
Thank you again for the hearings. I want to thank the
witnesses, who I know have poignant tales to bring here and it
is not often easy to talk about problems in one's family. They
are to be commended, as are you for these hearings. Thank you
very much for letting me appear this morning.
Chairman Collins. Thank you very much, Congressman. You
have been long a leader on health care issues and I am very
grateful that you took the time to be here with us this
morning. I look forward to continuing to work very closely with
you. I really think the answer does lie in a bipartisan,
bicameral effort supported by what we learn through these
hearings, the GAO report, and the advocate group. So we will
continue our efforts, and thank you for taking the time to be
here today.
Mr. Stark. Thank you.
Chairman Collins. I would now like to call forward our
second panel, and I particularly want to thank the witnesses on
our second panel for sharing their personal stories with the
Governmental Affairs Committee today.
We have been joined by Senator Pryor, who has had a great
interest in this issue. Senator Pryor, when you have a chance
to get settled, I want to give you the opportunity, if you have
any opening comments you want to make or if you would like to
introduce Patricia Cooper, who is from your home State.
Senator Pryor. Thank you. I don't have any opening
statement, but when the Chair is ready, I would like to
introduce Ms. Cooper.
Chairman Collins. Thank you very much.
I am particularly pleased to welcome Theresa Brown of
Westbrook, Maine. Theresa was forced to relinquish custody of
her daughter, Heather, on September 27, 1999, in order to
obtain the care that her daughter so desperately needed. She
tells her story very eloquently. I know it is a very painful
story, and as she told me earlier today, that was the worst day
of her life. I am very grateful for her taking the time to come
from Maine and be with us this morning.
We are also very pleased to be joined by Cynthia Yonan of
Glendale Heights, Illinois. She was also faced with the
decision of whether or not to relinquish custody in order to
find care for her twin boys, Sean and Ryan.
I would now ask Senator Pryor if he would introduce the
witness from Arkansas.
Senator Pryor. Thank you, Madam Chair. Again, let me thank
you for your leadership on this issue. It is something I know
that you have worked on for a long time and are very serious
about and we appreciate your leadership. I speak on behalf of,
I think, all the Committee members when we say that.
Here today, I would like to introduce Patricia Cooper. She
is from a town in Arkansas called Fayetteville, Arkansas, which
happens to be where I was born, and she is like so many
American families who have to make terrible choices when they
have children who are in need of mental health services.
Arkansas is one of those States, and I am sure there are a
number of them, where we really don't have the mental health
infrastructure that we need, and that is something that we need
to work on on the State level and local level. But certainly,
there are things that the Federal Government can do.
I am not going to try to steal your thunder this morning. I
want you to tell your story because it is a very compelling
story, but I just want to welcome you to Washington and welcome
you to the Senate and thank you for being here.
Chairman Collins. Thank you, Senator, and Patricia, I join
Senator Pryor in thanking you for coming to share your story
this morning.
We are going to start with Theresa.
TESTIMONY OF THERESA BROWN,\1\ WESTBROOK, MAINE
Ms. Brown. Thank you, Chairman Collins. I am honored to be
here and honored to tell you my story about my daughter.
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\1\ The prepared statement of Ms. Brown appears in the Appendix on
page 81.
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Relinquishing custody of my daughter was not part of a
birth dream, but soon became life's nightmare. My daughter is
now 16.
When she was 6, my struggle to find appropriate and
effective services were met with suggestions that I take a
parenting class on ``hard to manage'' children and rely on
school counselors, who are only available at school and
responsible for hundreds of children. I now realize that it was
not my child who was hard to manage, but a disorganized and
undeveloped system that did not provide resources that could
meet her needs in our community.
When the systems can't meet the needs of its children, it
reflects its failures like in a mirror, on faces of the parents
and families. Our skills are questioned. Our motives are
questioned. We are blamed. In my eagerness to do everything I
possibly could, we were also shamed.
By fifth grade, Heather had experienced countless visits to
crisis units. Ineffective and missing services paved the way to
police intervention. She assaulted her peers. I watched her
life spinning out of control with terror and a broken heart.
Feeling though we were drowning, I desperately grasped at each
weak thread offered to us as though it were our lifeline. The
police suggested that I send my daughter to live with her dad
in Mississippi. Needless to say, her return trip followed soon
because her symptoms continued to escalate.
Part of the problem for our children with mental health
needs is that we don't teach them to live in our communities or
provide them with the supports they need to do that. We teach
them how to leave. When the behavior looks bad, we send them
away. We send them to friends, relatives, programs,
institutions. They are kicked out of schools, excluded from
normal activities, and isolated from reality. We teach them
that they are not acceptable or worthy of a loving environment.
Systems break what bonds they have left and they are failed by
systems. Systems make them believe they have failed, and so
they sometimes do.
By age 12, my daughter's life was further complicated by
the fact that she was sexually acting out, using alcohol and
other drugs, and carving her body. Her pain and confusion and
frustration came home to the person who loves her the most. She
assaulted me. Police intervention led to hospitalization and
more assessments. I knew she needed help, not punishment.
After 6 years of struggling to find appropriate services, I
was told the only option for keeping her safe was residential
treatment. This would come with a price tag of ultimate human
sacrifice, custody relinquishment. In order to get her the
service that she needed, I would have to refuse to take her
home from the hospital, even though the Department of Human
Services was notified 3 years prior and knew of her needs. They
offered no other alternatives.
September 27, 1999, was the most devastating day of my
life. I had to tell my fragile daughter that I would not take
her home. I had been told that no crisis bed was available,
yet, though by magic, one appeared as soon as I complied.
What would you do? What price would you pay? What treatment
or other medical condition in this great country comes with
such a high prescription, relinquishment of custody?
Psychologists did not want to label my daughter with
bipolar at age ten. Instead, they waited all those years and
she got lots of other labels--delinquent, addict, promiscuous,
violent, and runaway.
Within weeks, Heather was placed in an unsuccessful
residential treatment program that refused to honor court
orders to work towards reunification and allow visitations.
The following year, Heather entered another residential
program and attended public school. The program ignored my
request to include drug and alcohol treatment. Heather needed a
special ed label in order to access specific therapies. She did
not qualify due to past educational achievements, though her
grades were failing. Behaviors at school and at her residential
program and at home continued to spiral downward.
Fourteen months into the residential program, Heather
assaulted a staff member, resulting in charges. The assault
immediately resulted in a special ed label with an emotional
and not academic basis. They were able to get what I had been
asking for all along. Heather began giving up thinking that she
would ever be able to return home and life.
When a staff member and facilities are unable to provide
the promised mental health treatment, their backup becomes the
police. Instead of increasing the capacity of the mental health
service delivery, they often view emotional symptoms and
behavioral issues and propel youth into the criminal justice
system. Our children at this crucial, pivotal moment are no
longer consumers of the mental health system. They are now
viewed as delinquents of the juvenile justice system, often
without treatment for their mental health disorders. I felt
like we were going backwards. They were now doing what I needed
to resort to.
In May of 2002, Heather was home on a visit and she ran
away. She received an immediate discharge from the program, no
transitional services, no school, nothing. CHS had no placement
available for her at that time, so they sent her home to me, no
supports, no nothing. I requested follow-up services, supports,
counseling during the transition that would allow Heather to
successfully live at home. DHS neglected to follow up with the
services, saying they did not know if Heather would remain
home.
In June 2002, I arranged some counseling for her myself.
There was a month wait without any supports. Heather broke a
window, acted out, used alcohol and other drugs. Criminal
charges resulted. Heather ran away again, was picked up by the
police and sent to the Maine Youth Center for 3 days and was
released to DHS, who had done nothing to help find her. I had
to file the report. They didn't even send me any supports to go
through this horror.
June 2002, they still didn't have a placement for her, so
they sent her home one more time.
In July 2002, she stole my car and was charged with
possession of a Schedule Y drug and was again released to me.
Within 30 minutes, she ran away again. She was sent to the
Maine Youth Center again.
Heather's hearing for the pending assault charges on staff
resulted in both assault and drug charges being dropped. She
took a plea bargain of guilty on criminal mischief charge and
was placed on 1 year's probation.
August 2002, she was sent to a locked behavioral treatment
center. For the first time, she began to receive treatment for
both mental health issues and substance abuse issues. It took
being charged with a Schedule Y drug in order to provide my
daughter with the appropriate services.
I have jumped through the hoops. I have continued to ask
DHS what I can do to get my daughter back. The last treatment
plan made was almost 2 years ago. It has been three-and-a-half
years, treatment in exchange for custody. Heather is now in a
locked facility and is on probation. Where are the outcomes? Is
this the direction you want to see treatment take?
The new DHS goal for Heather is independent living, not
reunification. Is this what you would want for your daughter? A
DHS worker told Heather during a treatment meeting that she
could get an apartment soon, and ``if you stay with us, we will
send you to college.'' Do you know many 16-year-olds who don't
want that offer? Do you know many families who could compete
with such financial inducement?
DHS defines jeopardy in this case as my inability to pay
for service. Recent documents indicate that jeopardy has been
reduced or eliminated. A January 2002 legal summary States the
role primarily is there for special needs.
I have not been able to see my daughter since her 16th
birthday. Have any of you seen her in the last 140 days? Have
any of you talked to her or communicated with her? I haven't.
She has been my life, and she did not deserve being treated the
way she was. Thank you.
Chairman Collins. Thank you very much, Theresa. I just
can't imagine any parent going through the agony of making the
decisions that you have had to make in order to get the
treatment that your daughter so desperately needed. It is my
hope that by hearing from you and the other witnesses today
that Congress will realize that we need to help the States
solve this problem and come up with a system that ensures
access to care for severely ill children without their parents
having to either get them arrested or give them up altogether.
Those are choices that no parent should have to make.
Cynthia, I would love to hear your statement now, too.
Thank you.
TESTIMONY OF CYNTHIA YONAN,\1\ GLENDALE HEIGHTS, ILLINOIS
Ms. Yonan. Thank you. Madam Chairman and Members of the
Committee, I want to thank you all for providing me the
opportunity to testify at this hearing about a subject that is
very near and dear to my heart, the struggle that my family has
endured in attempting to access mental health services for my
twin sons.
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\1\ The prepared statement of Ms. Yonan appears in the Appendix on
page 87.
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My name is Cynthia Yonan and I appear here before you today
as a parent deeply concerned from Glendale Heights, Illinois. I
am appearing today on behalf of NAMI, the National Alliance for
the Mentally Ill, and NAMI will be submitting a written
statement for the record.\1\
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\1\ The prepared statement from NAMI--National Alliance for the
Mentally Ill appears in the Appendix on page 214.
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In 1984, I was truly blessed with the birth of my identical
twin sons, Ryan and Sean. Despite our blissful beginnings, both
the boys showed early warning signs of mental health-related
concerns. My husband and I were divorced early in their lives,
and soon after his visitation was established, I discovered
that he had physically, emotionally, and sexually abused my
boys for one-and-a-half years.
The abuse had a devastating impact on Sean and Ryan. They
both required hospitalization. Sean required it for suicidal
tendencies and Ryan for homicidal tendencies. Both boys were
hospitalized. Sean attempted suicide three times and was
extremely unstable. He left the house in the middle of the
night. He stole food, he stole money, clothing, and other
items, and Ryan exhibited the same difficult behaviors and also
could not control his anger. He was removed from school after
making violent threats.
Because of the seriousness of their illnesses, both boys
spent 3 months in a locked hospital. This quickly exhausted my
private health insurance benefits. It had restrictive caps on
the mental health coverage, and those caps caused my sons to be
released back to me from the hospital, at which point I turned
to the County Mental Health Department and they directed me to
turn over my children to the State to secure the treatment that
they needed.
Both of my sons were diagnosed early with bipolar disorder,
attention deficit, hyperactivity, post-traumatic stress
disorder, oppositional deviant disorder, and they were born
with Kleinfelder's syndrome. That is an illness that results
from having an extra ``Y'' chromosome and makes them naturally
overly aggressive and they have a lack of impulse control.
Our struggles grew after the boys returned from the
hospital in January of that year. At that time, I also had
three daughters at home, 16, six, and five. Sean and Ryan
didn't return back to school like the other kids and I spent
from January through May attempting to find them an educational
placement. The school district failed to provide me with any
assistance.
Tragically, during this time, and despite my attempts to
keep a 24-hour watch on my sons, they threatened and assaulted
two of my daughters. As you can imagine, this was devastating
to my family. I was physically exhausted, at my wit's end and a
nervous wreck every minute of the day. It was quite clear that
the boys needed intensive mental health treatment services.
Through this incredibly trying experience, I was forced to
quit my job to stay home to keep the boys and my daughters
safe. Despite the loss of my job and income, Medicaid wasn't an
option for mental health services because I owned my house and
I didn't qualify under the strict minimum assets requirement. I
could have been living in the streets. That was the only way I
could have gotten Medicaid at that time. I simply didn't know
where to turn to secure the mental health services for my sons.
Extremely exhausted and frustrated, I searched for help
from the Department of Mental Health and the Department of
Children and Family Services. Both agencies informed me that I
would have to turn my sons over to the State to secure mental
health services. Frankly, I was shocked when faced with this
decision. I couldn't fathom how State agencies could ask a
family to abandon their ill child to secure mental health
services. At the time, I wondered if families with children
that had anything other than brain illnesses, like cancer, were
ever asked to turn their child over to the State for treatment.
I love my sons, despite all that we have been through. They
are ill, not bad. I was determined that I would not abandon
them in their hour of greatest need. Giving up my sons was not
an option and it would serve only to make them feel unwanted
and unloved, not to mention further trauma that it would cause
in their lives.
I spent 2 years calling and searching for mental health
services for my sons. In 1998, I was directed to the Community
Residential Services Authority. It is a well-kept secret and
one that was offered to me only after years of struggle and
pain and when it became clear that I was not going away. The
State agency was created for kids that do not fit within the
criteria of services established under DCFS, the Department of
Mental Health, the Department of Corrections, or the Illinois
Care Grant. With guidance and help of the CRSA, my sons were
placed in a residential treatment facility in July of 1999. I
am pleased to report that the treatment they have received has
made a significant difference and given us hope for a brighter
future.
No family should be forced to go through what I did, or
anybody else at this table. Families with children that have
serious mental illnesses want and deserve laws that provide
funding for mental health treatment so no family is told they
must give up custody of the child to secure mental health
treatments and services.
I am so pleased that Senator Collins has proposed the
introduction of legislation to address this crisis. Her
leadership is greatly appreciated, and you have no idea what
you are doing for us parents and our children, ma'am.
Again, I thank you for the opportunity to speak with you
this morning and I am happy to respond to any questions that
anybody has. Thank you.
Chairman Collins. Thank you very much, Cynthia, for your
very eloquent statement. I think your experience shows what can
happen when a family does not know where to turn for
assistance, is denied coverage under Medicaid because of the
asset test, and can't afford the treatment themselves. It is
also interesting that it took you 2 years to even find some
source of help, which is another part of the problem. It is
another example of the flaws in the system.
Ms. Yonan. Can I say something?
Chairman Collins. Yes, please do.
Ms. Yonan. If I didn't have to go through that 2-year
process, my two younger daughters would never have been hurt.
My boys would have been picked up immediately from the
hospitalization stay and placed in a facility. Right now, my
boys are turning 19 and they are moving into their own
independent living program. One, Ryan, is going to be living on
his own in an apartment in Chicago shortly and his brother will
be there 3 months after him.
But what it did to the rest of my family, and I am not just
talking the immediate family, my mother, my brothers and
sisters, this affects every life that you are connected to, and
these children had a right to have that care. I just want to
know why that if I turned my child over, these agencies would
fund them. It was the same money. It didn't matter whether they
had custody or I had custody. The money was there anyway.
And what I don't understand, ma'am, and maybe you can
figure this out at the Federal level, is why these agencies
don't work together. We need an interstate agency agreement,
whether it is on a Federal level or a State level, because one
agency doesn't know what the other agency is doing. They don't
know what funding they can do for this and what they--the money
is out there. We do need--everybody needs more money, but the
money is there and we need some kind of legislation passed to
change this.
I am hoping that what you are proposing is going to go
through, and if there is anything I can do personally, I will
be more than happy to help you, and I can get as many parents
as you need to come to Washington.
Chairman Collins. Thank you so much. The questions you
raised are exactly the right questions. This really isn't a
question of money because if you are willing to give up custody
of your children, the money is there. Something is just
terribly wrong with a system that withholds treatment that is
desperately needed by these children until they get into ``the
system.''
Ms. Yonan. If they had leukemia, they would be treated.
Chairman Collins. That is right.
Ms. Yonan. But like Representative Kennedy said, your brain
is part of your body.
Chairman Collins. Right.
Ms. Yonan. They are sick. They are not bad, they are sick.
If you have leukemia, you get the treatment. But if you have a
mental illness, you don't, and that, to me, is inhuman.
Chairman Collins. Thank you.
I would now like to call on Patricia for her statement.
TESTIMONY OF PATRICIA COOPER,\1\ FAYETTEVILLE, ARKANSAS
Ms. Cooper. Madam Chairman and Members of the Committee,
thank you for providing me this opportunity to testify at this
hearing about the long struggle that my family has endured in
attempting to secure appropriate mental health services for my
son.
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\1\ The prepared statement of Ms. Cooper appears in the Appendix on
page 90.
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My name is Patricia Cooper. My son's name is Dakota. We
live in Fayetteville, Arkansas. I am also appearing today on
behalf of NAMI, the National Alliance for the Mentally Ill, and
NAMI will be submitting a written statement for the record.
Despite appearing on behalf of NAMI, this is my personal story
about what my family has gone through.
Our son, Dakota--this is him--came to live with me and my
husband, his biological father, in 1997. John has full custody
of Dakota. He is a wonderful boy with big bright blue eyes.
They will get your heart. And he has blond hair. He loves
sunsets and he always insists that we stop to enjoy them. He
also loves everyone around him. Friday is Dakota's birthday and
he will be 12 years old.
Dakota suffers from multiple mental illnesses, including
attention deficit-hyperactivity disorder, reactive attachment
disorder, left hemisphere processing deficits, oppositional
defiant disorder, and post-traumatic stress disorder. The
symptoms of these illnesses cause Dakota to act out in extreme
ways, including attempts to start fires, using knives in
dangerous and sometimes threatening ways, running out of school
into busy intersections, and sometimes hurting the dog. But, of
course, this dog is his best friend, his only sibling, and he
loves her, as well. He is a really great kid. He cannot be left
unsupervised at any time or anywhere.
Despite these challenges, John and I love our son. We know
his actions are the result of his struggles with his mental
illnesses. It is not because he is a bad kid. He is the best
kid you could ever have. He picks you flowers. He loves
sunsets. He loves colors. He is a very visual person. He wants
to take care of you when you are sick, very attentive to your
needs.
Our journey began in 1997 when the school noticed that
Dakota was really struggling. The principal informed us that
Dakota needed immediate help, and, of course, we were not
surprised because of Dakota's behavioral struggles at home.
Although we wanted to keep him in our home, it was clear to us
that he could not continue to safely reside there without the
appropriate support and services to address his mental health
needs.
Unfortunately, our private insurance did not cover home and
community-based mental health services that we needed for
Dakota. Our policy included caps and restrictions on mental
health coverage and fell far short of the intensive services
that Dakota needed. Our income level does not qualify our
family for Medicaid because both John and I work.
At this time, we decided that our only option was to place
Dakota in a residential treatment facility. He did OK with the
placement, and this first placement happened not long after he
came to live with us. So we were extremely excited and full of
hope and ready for him to return home and start anew.
But, of course, things did not go well at home with Dakota.
The truth is, our family was falling apart. We were talking
about divorce. We were working different shifts. I was trying
to finish my degree at the University of Arkansas. My husband
was working 80 hours trying to pay the bills. It was very hard.
We called the Department of Human Services and they
informed us that there were no services for Dakota and our
family. Of course, they would refer us to the mental health
institutions, but if you don't have money, what are they going
to do for you? Over time, they suggested that, given the
seriousness of Dakota's mental illnesses, we consider giving up
custody of him to the State to secure the level of services he
needed. Over the past few years, we have heard this many times.
I have been told this so much. We refuse--I refuse to consider
this option. He is worth loving and he is worth helping and I
will not give up on him.
In late 1999, a school-based therapist told us about a
TEFRA Medicaid option, and this is also known as the Katie
Beckett option, that could help fund intensive home and
community-based services that Dakota needed. Dakota also spent
time in multiple residential treatment facilities.
Unfortunately, not all of these placements went well. Actually,
after one stay, we were told that we would need to take him
home with virtually no appropriate home and community-based
services. We expressed great concern that without the
appropriate treatments and supports, Dakota would suffer
serious setbacks and his illnesses would worsen.
This has happened almost after every release from a
treatment facility because we don't have the support in our
community. We need respite. We need someone to be with him when
we can't be with him because he is a 24-hour, seven-day kid.
But he needs to be in the community. He needs to know how to
socialize from us. He needs to be a part of our family.
It was then that we were told that Dakota would be placed
in a therapeutic foster care through a voluntary placement
agreement. He was placed with a family that lived 4 hours for
home and for 11 months. The State used an abuse and neglect
proceeding to place Dakota in foster care. John and I were
treated by the foster care system as parents who had abused and
neglected our son. It was very painful and humiliating and I am
never going to go through that again. They were very helpful
and nice, but as soon as we said, ``I do,'' the tone changed
and we began to fight to get him back. It was not about help.
That is my impression.
During the past year, Dakota has resided in residential
treatment facilities in three States, Oklahoma, Colorado, and
Arkansas. We only wish that the appropriate home and community-
based mental health services existed for Dakota and our family
and were adequately funded. That is a big part. We want Dakota
home with us, the people that love him most, the family that
loves him the most, the place where he can do the best. I just
know it. We also wish that our families did not have to endure
the long battle that we did, that we had to go through to
secure the mental health services, and the toll it has taken on
our family.
I want to thank you, Senator Collins, for your leadership
in addressing the tragedy that far too many families in our
Nation face in struggling to secure mental health services for
their children. Thank you again for this opportunity to speak
with you this morning and I am happy to respond to any
questions you may have. Thank you.
Chairman Collins. Thank you very much, Patricia, for
sharing Dakota's story and your story with us.
I couldn't help but think as I have listened to all three
of you how difficult it is for a family to cope with the
challenge of raising a child who is suffering from a mental
illness. That is hard enough. But then for all of you to face
obstacle after obstacle to getting the care that your children
need is just placing an extraordinary burden on you at a time
when you already have your hands full with a considerable
challenge. That affects the entire family, as each of you have
said.
Each of you has said that you realized that your children
were suffering from a mental illness, or that something was
desperately wrong and that they needed help. Yet in listening
to your personal experiences, I noted that in each case, it
took a long time for you to get the treatment that your
children so desperately needed.
I would like each of you to comment, and Cynthia, you did a
little bit, but I would like each of you to talk about how you
think life might have been different for your child and for
your family had you been able to get the help that they needed
early, when you first realized that they were suffering. When
you realized that it was beyond your ability to cope and that
your children needed professional mental health services. How
would that have changed life for you, Theresa, and for Heather?
Ms. Brown. I think with Heather's diagnoses, if they would
have given her residential treatment when they knew she needed
residential treatment, then I don't believe she would be
suffering so bad from post-traumatic stress disorder. She would
not have this sexual addiction that she has. She would have
been able--she wouldn't have had to turn to drugs and alcohol
to cover her feelings. Us, as a family, I would be able to
enjoy what a lot of families enjoy with a 16-year-old girl,
being able to go with her to the store to buy a dress for prom,
getting her license, I mean, just having her friends over at
the house.
If they would have just diagnosed her. They wouldn't do it.
And there were only two options out in Maine for her, and she
didn't qualify for either one of them. And the two options were
DHS, which they weren't involved, so they wouldn't help, or the
school. And because she was a straight-A student, they would
not sign off for her to get treatment.
Chairman Collins. Did people at Heather's school identify
behavioral or other problems and come to you about them?
Ms. Brown. Every report card, comments on behavior, and
when it is brought to their attention, I was told that they
would rather deal with her behavior, that they could deal with
it and it was a parenting problem.
Chairman Collins. Cynthia, you started to talk about this
in when you said that had your sons received the help that they
needed, that you would not have had the devastating assault on
your daughters. Could you talk more about the delays in getting
treatment for your sons and what that meant to their progress
and also your family?
Ms. Yonan. If my sons had gotten the proper funding, if
there was some source after my medical care, health care ran
out, my sons wouldn't have lost 3 years of their lives in
residential facilities. They probably would have spent 1 year
in a residential facility.
Our family was torn apart, my younger daughters, my older
daughter, and my sons. I wouldn't have had to stop working. I
wouldn't have had to go to food pantries to feed my family. I
wouldn't have had to move out of my house into my niece's house
just to get public aid and then do as much as I could to
maintain a family on nothing and no money and nowhere to live.
I wouldn't have probably suffered two heart attacks and have a
disease that is going to kill me because the stress set off the
heart attacks.
My whole life has changed. My sons' lives have changed. We
lost--we lost years together, the things that mothers and sons
do, baseball games and all the things that you do with your
family, vacations and all the wonderful fun-loving things
people take advantage of didn't exist in my family.
And had my sons gotten that funding and it would have taken
them 1 year at a good facility like the one they are at now in
Onarga, Illinois, I believe that they could have come back and
lived in my house and we could have resumed our family life,
because we are doing it now. But because there was nothing out
there, and that 2 years I spent calling everybody in the State
of Illinois, I wrote to legislators, senators, and governors
and they had no answers because they didn't know how to tell me
what to do except give up my kids. How could--I cannot fathom
that.
I know what these women have gone through, and millions,
and I am talking millions more across the world and in the
United States of America, and I will tell you this much. I wish
to God everybody had a CRSA. It is a State agency that was
proposed by legislation in our State that helps families like
ours. If I would have found out about that, I wouldn't have
lost all those years of my life and my sons' life.
Chairman Collins. But it was 2 years before you found out.
Ms. Yonan. Yes, because it was the best-kept secret in the
State. Nobody knew about it.
Chairman Collins. Thank you.
Ms. Yonan. Thank you.
Chairman Collins. Patricia, can you tell us the difference
it would have made to your family and to the treatment of
Dakota had you been able to find the help that you needed
sooner and without relinquishing custody?
Ms. Cooper. I believe that Dakota would be a lot further
along than he is now. Of course, we are reaching age 12. He is
reaching age 12, which puts him in the really risky category,
and we have been trying to do everything we can to try to beat
that. Of course, if we would have started earlier, he could
have possibly been further along in school. I mean, he is
reading on a first grade level. His math is second. He
socializes at a 5-year-old's level. We just wasted time and
there was nothing I could do.
I want to believe that he would be further along than he is
now and he very possibly would not be gone from me for this
whole year. It has been a year since he has been home, in a
residential treatment facility. Of course, if we had the step-
down method of easing him back into our home, and then plus
having more than just wrap-around with family therapy and
individual therapy, if we actually had someone who could be a
support to us and to him, it would have made a world of
difference, I could bet my life on it, because if they could do
what I can do in the home, if we could just make everything
work together, he could do so much better.
Chairman Collins. Each of you have told a story that is
just heartbreaking, and I know all of you want nothing more
than to have your children living with you and with the support
systems and the treatment tht they need available to them right
at home. You have given us a lot to think about.
I am going to call on Senator Pryor for his questions.
Senator Pryor. Thank you, Madam Chair.
I would like to start, if I could, with Ms. Cooper. One of
the things you mentioned in your statement is private
insurance. In Arkansas, we have been having this ongoing fight
down at the State legislature about mental health parity and
trying to make sure that insurance covers mental health issues
on an equal basis, and you know that fight. There have been
some victories and some losses there.
Let me ask about your insurance. I believe you said it was
inadequate to cover what you have.
Ms. Cooper. Right. Actually, at the time that Dakota came
to live with us, the insurance my husband had put a two--I have
just lost the word--we couldn't use the insurance--preexisting
conditions for 2 years----
Senator Pryor. Oh, OK.
Ms. Cooper [continuing]. So we weren't allowed to use it
for anything with his mental illness except medication.
Senator Pryor. So there is a preexisting clause in your
insurance, so it doesn't help at all.
Ms. Cooper. Right, because we told them of his problems.
Then they wouldn't allow us to use it.
Senator Pryor. All right. Let me ask the other two
witnesses about private insurance and your experience there.
Ms. Yonan. When my sons were hospitalized for the first
time, they were in an inpatient setting and it is very costly
to do that. My mental health--the capacity, the range, because
there were caps on how much was expendable, was--it was just
run dry. I had two sons in there.
Senator Pryor. Sure.
Ms. Yonan. It wasn't on a yearly basis that this was--
because I restarted in November and they went through to
January, so they considered it split into two different years
and it sucked up all of the expenditures that were available
and there was nothing left. There was no way I could get
separate insurance for these boys because they had preexisting
conditions.
Senator Pryor. Right.
Ms. Yonan. Nobody would touch them with a ten-foot pole.
Senator Pryor. OK.
Ms. Brown. I didn't have insurance at the time, but when I
was able, when I was working and I did get insurance, it also
had preexisting conditions that wouldn't enable any treatment.
She was on Medicaid through the State at the time.
Senator Pryor. And your struggle with what your families
are going through on an ongoing basis, are you aware of anyone
that has adequate private insurance to cover the needs of their
families, their children for mental illness? Have you all
talked to anyone who has?
Ms. Yonan. No.
Senator Pryor. That is my impression, too. Go ahead.
Ms. Yonan. Well, like Representative Kennedy said, they
don't consider it like a sickness. They give you a certain
amount of dollars that you can spend, and when those dollars
are spent, oh, well. I mean, your mental illness isn't going to
go away like that. But like I said previously, if it was
leukemia, they would pay for it your entire life.
Senator Pryor. Right.
Ms. Yonan. I don't know anybody who has personal insurance
that would do that on a mental health basis.
Senator Pryor. There may be a few out there, but my
impression is just the vast majority are not going to be
adequate to cover what your needs are.
What are you all hearing, and again, I will start with Ms.
Cooper, what do you all understand to be, I mean, what are you
told is the rationale for requiring you all to relinquish
custody of your children? What is the rationale for that that
has been given to you?
Ms. Cooper. Well, basically, because we don't have the
supports in our community to keep him and he is continually
having to leave to go back into a residential treatment
facility, because he is getting older--with such short stays
between each residential treatment, 6 to 9 months is not long
enough to adequately treat anything, in my opinion, when it
comes to mental illness. So, of course, we haven't really been
able to find a way to help him, and given his age and he is
very violent--potentially, he can be very violent, and bringing
him home without support, he could run away, he could get
involved with the juvenile court system, do things, and it may
come to a point where at 15, when I need to watch him 24/7 and
I can't find that help, I am going to be forced into that
option of asking the State to help.
Senator Pryor. What were you told about why you have to
give up the custody of your children?
Ms. Yonan. They told me that they couldn't bend the rules
to fund my child--children--because they didn't fit the
specific criteria. They didn't have enough mental illnesses for
one department. They didn't have the right mental illnesses for
the other department. And, of course, DOC, the Department of
Corrections, they didn't have a criminal record. So when they
didn't fit, they couldn't go outside the box of their specific
criteria in the State. On the local level, there was nothing
that was intense enough to take care of my children because of
the multiple diagnoses and the abuse and I didn't have any
money to pay for it anyway because I had to quit and stay home
and watch my kids.
Senator Pryor. Has that been your experience, as well, that
a lot of children don't fit in the right box for certain
agencies?
Ms. Cooper. Right.
Senator Pryor. Now, is that a State or Federal issue or
both?
Ms. Yonan. That is State.
Ms. Brown. State.
Senator Pryor. State mostly? State?
Ms. Yonan. Each State has their own individual criteria on
what they will accept. I believe, like in mental illness, they
have, as far as the disease and the psychoses diagnosed, they
have to combine--they go by the same criteria. But each State
with their own funding manipulates it as they see necessary
according to each department.
Senator Pryor. And Ms. Brown, what was your answer on the
rationale you have been given on why you have to give up
custody?
Ms. Brown. Because Medicaid did not pay for residential
treatment of my daughter for mental illness and for long-term
treatment, that would be residential, and so I had no other
option, because if I put her in State custody, then they would
be able to receive Federal funds which would help pay for her
treatment.
Senator Pryor. Thank you, Madam Chair.
Chairman Collins. Thank you.
Senator Durbin.
OPENING STATEMENT OF SENATOR DURBIN
Senator Durbin. Thank you, Madam Chairman, and I want to
especially thank you for this hearing. I am afraid there aren't
enough of us on Capitol Hill talking about these problems.
I find it interesting when I go back to my State, or
anywhere, for that matter, if I mention the issue of mental
illness, after I have given my little talk, invariably, someone
will come up to me and say, ``I need to talk to you. I have had
a problem in my family. We have had a problem with our
neighbors, our friends.'' This is a real American family
problem that we don't talk about. I don't know why.
I think it goes back to perhaps what Ms. Yonan said
earlier. We just don't view this as an illness. It is something
else. I think we view it as a 19th Century curse and we don't
know if we want to be around the people who have been cursed,
and that is just plain wrong. That isn't fair to the victims.
It isn't fair to their families. And you see it evidenced so
often.
Thank you, Ms. Yonan, for being here from Illinois----
Ms. Yonan. Thank you.
Senator Durbin [continuing]. And telling your story, along
with Ms. Cooper and Ms. Brown. But you really put your finger
on it here. Who would ever consider telling a parent with a
child just diagnosed with cancer that the only way your child
can be treated is to be removed from your home, taken off
somewhere and treated as if they have been incarcerated, or
they are being punished? This is just totally upside down.
The current health care system in America is not rising to
the challenge at all. We have talked about private health
insurance here. We have 64 cosponsors of the Wellstone-Domenici
bill on parity for mental illness and health insurance. Of all
the important things we are doing in the U.S. Senate, for
goodness sakes, in the name of Paul Wellstone and for our good
friend Pete Domenici, why isn't this bill on the calendar
today, next week, so that people are not discriminated against,
so that they have an opportunity to have mental health services
covered with their health insurance.
I have a bill on discrimination. I have people that I have
talked to who are afraid to talk to a doctor about depression,
which is a common illness in America and a treatable illness in
America. They are scared to death to put it in their medical
record for fear that from that point forward, there will be an
exclusion on their health insurance policy so they can't be
covered for it. Now, this makes no sense at all. People are
unhappy, unproductive when they could be treated and treated
successfully.
I am glad, Ms. Yonan, that you told the story about finding
at least an answer to your prayers for your sons in Illinois,
but thank goodness you found it, because people weren't giving
it to you as a first option at the outset. I understand some
5,000 people have been served by this in our State, in
residential treatment facilities, that at least give you the
peace of mind that professionals are helping your boys.
How did you discover this? I mean, the Department of
Children and Family Services and others never brought this up?
Ms. Yonan. No. I started out being involved with the
Department of Mental Health and they assigned an SAS worker to
my case, and basically I asked, well, they need long-term
health. Is there anything I can do? No, we don't know anything,
la, la, la. A DCFS worker was assigned to my case. She didn't
know anything. Without the kids being turned over, there was
nothing out there.
I wrote to Senator Pate Phillips. I wrote to Kathy Wojcik
and said, is there anything out there? I need help. I need
help. And the caseworker in DCFS, who is an angel of God, found
out about the CRSA and Senator Phillips, when he wrote to the
governor about my case, found out about the CRSA and they gave
me the phone number and my whole life changed.
Senator Durbin. It took you 2 years, as I understand?
Ms. Yonan. Two years, 2 years of searching.
Senator Durbin. Before you discovered this. And you were
caught in the middle, not poor enough for Medicaid, not wealthy
enough to pay out of your pocket----
Ms. Yonan. Exactly.
Senator Durbin [continuing]. So you were stuck. Health
insurance wasn't going to cover it, and but for this program
stepping in, there was no place to turn.
Ms. Yonan. Absolutely none. My sons--I truly believe one
would have been dead and one would have been in jail. I had
nothing.
Senator Durbin. Madam Chair, as if you don't have enough to
do, my friend and former colleague Paul Simon has just done a
program on the incidence of mental illness among those
incarcerated. I call tell you, the Illinois Department of
Corrections, probably the Federal Department of Corrections and
so many others, totally unequipped to deal with this problem,
prisons being filled with people with mental illness and no
treatment. It is the worst memory of the snake pit that we
recall from our youth, this terrible idea that you would be
trapped in a prison with a mental illness and no place to turn,
and that is what is happening.
Your sons were diverted into something where they can get
some treatment. Had that not occurred and terrible things
happened and they would have been arrested and put into the
system, who knows. They could be sitting in Pontiac or Joliet
or you name it, whatever prison, with no treatment whatsoever.
Ms. Yonan. And they would never get out.
Senator Durbin. In the darkness and depths of their mental
illness, and that is a fact and that is a cruel reality that
this great Nation has to face up to, as well.
Madam Chair, thanks for your leadership on this and thank
you all for joining us.
Chairman Collins. Thank you, Senator Durbin.
Theresa, I just have one more question for you that I want
to bring out. When you very reluctantly relinquished custody of
your daughter, did you also then lose control of having any
voice in her treatment? Were those decisions also taken from
you, or are you able to be involved in deciding what happens to
your daughter?
Ms. Brown. In the beginning, they would ask me what I felt.
But at this point, I have absolutely no say whatsoever, none.
Chairman Collins. So that must be extraordinarily difficult
for you, also.
Ms. Brown. It is, because I, on top of not having contact
with her, I don't get to help make health decisions for her.
She had to have a tooth pulled and they tell me after the fact.
I mean, I don't get notified of anything anymore. I mean, it is
just--I don't understand, and when I try to find out, nobody
will tell me. And that--it makes it so difficult, because I
haven't done anything wrong, and neither has my daughter.
Chairman Collins. And Patricia, I think that this is a
point you were making, too, when your son was placed in a
foster home, a voluntary placement, but essentially one that
categorized you and your husband in the same category of people
who had abused or neglected their children. Is that correct?
Ms. Cooper. Yes.
Chairman Collins. So that must be extremely painful for
you, also.
Ms. Cooper. Yes. I did not like it--it wasn't a control
issue, it was a mom and dad issue, that we had always done what
we needed to do for him, and to get him services we were
required to give him up and have that removed from us, it was
very painful. He was 4 hours away. You miss holidays and the
tooth fairy coming. If he is sick, you are not there. Of
course, the communication, because we were over different
counties, no one communicated. It was very hard to get people
to communicate. If I knew something, it was because I probed. I
didn't know anything much about his school grades. I didn't
know who his teacher was. So, yes, I don't want to go through
that again. I like being a part of the decisions that are made
for him.
Chairman Collins. Cynthia, I want to inject a positive note
and tell you that is why I think all of us are cosponsors of a
bill called the Family Opportunity Act that would allow
families who make too much to qualify for Medicaid but still
can't afford the health care that their children need to buy
into the Medicaid program on a sliding premium level. My hope,
along with the mental health parity bill, the Family
Opportunity Act, and the legislation that I am working on with
the two Congressmen, I am hoping we can really put together a
package of bills that will make a difference.
I want to thank each and every one of you for coming
forward today. We read the statistics about the number of
children suffering with mental illness. We have talked about
the survey done by the NAMI that tells us that far too many
families are forced to relinquish custody. But your personal
stories remind us of what it is like for families, and I really
appreciate your willingness to come forward. I know you have
been through extremely painful experiences and hard times, but
my hope is that your stories will enable us to work together to
make a difference, so that other families don't have to endure
the heartbreak that you each have endured. So thank you so much
for being here today. Thank you.
Ms. Brown. Senator Collins, can I say one more thing?
Chairman Collins. Yes, Theresa.
Ms. Brown. I want you to know that, as of now, in the
court's eyes, I am being selfish and inconsiderate of my
daughter's needs because I want custody of my daughter, and so
I just wanted you to be aware. I don't understand, when did not
having a mother--I am her only blood relative in the State of
Maine and I can't--she had a friend get in a car accident very
recently who is in critical condition and I can't even be there
to comfort her. It is just--I don't understand.
Chairman Collins. Well, it is devastating and there is
something horribly wrong when you have a system that isn't a
system--but rather just a series of coverage gaps.
Our next panel also has a great deal of experience, and
again, I want to thank you so much for sharing your stories
with us today.
Chairman Collins. I would now like to call our third panel
forward. We will hear from representatives of organizations
directly involved with families facing the challenge of finding
appropriate mental health services for their children.
I would first like to welcome Trina Osher, who I had the
pleasure of meeting earlier today and who will be testifying on
behalf of the Federation of Families for Children's Mental
Health. The Federation is a family-run organization, and I
think that makes its views particularly important. It is really
a grassroots organization. It focuses exclusively on children
with mental health needs and their families, with 150
affiliates in communities throughout the country. Ms. Osher has
a very strong personal as well as a policy perspective that she
is bringing to this hearing because she, too, was forced to
relinquish custody of her own child 17 years ago.
I would also like to welcome Tammy Seltzer, who will
testify on behalf of the Judge David L. Bazelon Center for
Mental Health Law. The Center is the leading national advocacy
organization for adults and children with mental disabilities.
Ms. Seltzer will help the Committee understand the challenges
facing parents who must rely on public services to ensure that
they have equal access to mental health care.
And finally, we are very pleased to have here today Dr.
Jane Adams, the Executive Director of Keys for Networking in
Topeka, Kansas. Dr. Adams will share with us the success of a
home and community-based services Medicaid waiver program in
Kansas, and when we talked with people in preparation for this
hearing, over and over again, Dr. Adams came up and the State
of Kansas came up as a model that we could look to in trying to
encourage other States to improve their services.
So we are very pleased to have all three of you here today,
and Ms. Osher, we will start with you.
TESTIMONY OF TRINA W. OSHER,\1\ COORDINATOR OF POLICY AND
RESEARCH, FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH,
ALEXANDRIA, VIRGINIA
Ms. Osher. Good morning, and thank you so much, Senator,
for the opportunity to speak here today. As you said, I am
speaking on behalf of the Federation of Families for Children's
Mental Health and thousands and thousands of families who have
faced the agony of relinquishing custody so their child could
get mental health services.
---------------------------------------------------------------------------
\1\ The prepared statement of Ms. Osher appears in the Appendix on
page 94.
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As you said, it is 17 years since my husband and I,
desperate, desperate, desperate for help and with no other
options, relinquished custody of our own middle child so he
could go to a therapeutic residential school. It was a
devastating experience with lifelong repercussions for everyone
in our family and we are greatly encouraged by the attention
this cruel social policy is now getting thanks to your efforts
and we hope the Congressional action will soon put an end to it
forever.
From a parent's point of view, what is the problem? Parents
in general, parents around this country have limited mental
health coverage in private and public insurance plans. This
causes families to exhaust benefits before the mental health
needs of their children are fully addressed, as some of you
were asking about. This is especially true if a child's
condition is chronic and intensive intervention is periodically
required. We are either urged or required to relinquish custody
to access funds that will pay for the mental health services so
desperately needed.
A recent study of 176 Maryland families, and I am from
Maryland, showed that almost two-thirds of families whose
children had had lots of hospital visits were told to
relinquish custody. How many other parents would do such a
thing? How many of us would even be asked to do such a thing if
our children didn't have a mental illness?
Children who are relinquished in order to get mental health
service are deprived of their right to be connected to their
family. A family should be a lifelong source of emotional
support. Parents who relinquish custody are deprived of the
right to make everyday decisions about their child, like what
they will wear and what they will eat, who they will play with,
where they will go to school, or if they will be taking
medicine for their mental health problems. How would any of you
feel if you could only see or talk with your child with the
permission of a judge or under the watchful eye of a social
worker?
Safety concerns often lead to custody relinquishment. A
number of the stories we heard from in the previous panel
illustrate that, and let me give you another example from
Oregon. A family was seeking help for a child who is 16 years
old, who was running away from home, who was not cooperating in
school and refusing to take medication and living on the
streets. Children's Services recommended residential treatment.
They took custody of the child and placed him in a foster home,
from which he continued to run. Would you feel good about this
outcome if it was your child?
What is needed, as you said in your introduction a couple
of hours ago now, I think, Mrs. Collins, is a combined approach
that bans the practice but also increases access to effective
mental health treatments and services for our children.
In inviting me here today, you asked me to identify some of
the barriers we face in trying to get help for our children. No
matter how hard we try, we can't seem to get what we need, when
we need it, and how we need it. Continually being denied access
exhausts us and eventually defeats even the most resourceful
and stable of families.
Like all children, ours need outlets for physical activity
and social interaction, but they can't participate in after-
school activities or community recreation programs without some
kind of supervision or support, like a mentor or someone to
help them with the social interactions and help them control
their behaviors. There is no insurance program that will pay
for such assistance. It is not considered medically necessary.
We need a break from time to time. Unlike most parents, who
get a babysitter so they can go out to dinner and a movie,
there is almost no one who is willing to take care of our
children because of their challenging behaviors, and if we do
find someone, it is much more expensive than regular
babysitting. It seems rather unfair to us that families who
have a child with developmental disabilities easily get respite
care and we can't.
Schools are not able to help most of our children, either.
According to the Department of Education, about 50 percent of
students identified as having emotional behavior disorders drop
out of school. Once they leave schools, these students lack the
social skills and other skills necessary to be successfully
employed and eventually feed into some of the adult systems we
have heard other people talk about already.
Many parents have to give up good jobs to care for a child
who is repeatedly ejected or rejected from schools and other
programs. One parent recently told me he has not been working
for over a year just because his son needs adult supervision at
all times, and this child is not in school because the school
system says they can't serve him.
When we bring our children home from hospitals or
residential treatment programs, we need intensive and flexible
after-care services and transition services. Yet, most of our
children return home without any follow-up. Typically, severe
problems recur because they were not stabilized in the first
place, mostly because the hospitalizations were too short
because that is all the insurance would pay for, and then
after-care arrangements with schools and community-based mental
health treatment services and home-based family supports were
never made.
Our children and families need more options besides a
hospital bed and a typical 50-minute therapy hour. A few
examples. Our children need special help to develop social
skills and self-control in the real world where they are having
their troubles, but mental health professionals don't work in
these settings. They just work in their offices.
We often need special support to do normal family tasks,
like getting ready for school or supervising homework. Many of
us can't even get to mental health services without getting
help with transportation or care for other children. And
ironically, as much as we may need and want the benefits of a
support group, sometimes we are just too exhausted to go.
We are often caught between conflicting requirements of
several different child-serving systems. I recall vividly one
meeting on my own child where case managers from four different
systems--four different systems, education, mental health,
juvenile justice, and social services--could not agree on what
the problems were or how to address them. Lack of common
definitions, lack of terminology, lack of common mandates, and
confusion about eligibility criteria across these systems and
the providers within them contribute significantly to the
problem.
You also asked me to identify what Federal and State
Governments might do to help. Here are some suggestions for
you. State and Federal policies really must make it possible
for us to keep our children safe in the neighborhood, make it
possible for them to make good progress in school and to live
with us, the family that will love and care for them as no one
else will.
I am going to digress for a second from my remarks. I was
so struck by the previous panel, that every single one of them,
their children weren't in school. Now, if parents of typically
developing children didn't send their kids to school, what
would we be doing? Charging them with abuse and neglect for
failure to send your child to school. But because you have a
mental health problem or a behavior problem, somehow or other,
you don't get to go to school.
Congress must prohibit, and I really mean must prohibit
States from requiring parents to voluntarily transfer legal
custody of their child just to obtain mental health treatment,
whether these are out-of-home placements, Medicaid eligibility,
in-home supports, community supports, or access to any other
Federal source of funding.
There is a huge lack of services in general in our
communities and Congress should really consider increasing the
State mental health block grant program substantially, maybe up
to as much as 20 percent, and designating all of that money
specifically for children and their families.
Congress also needs to think about establishing a long-term
program and funding it so that there is a larger pool of people
who are qualified to serve our children and our families in a
manner that is respectful of family-driven practice and the
values of systems of care. We don't have enough people who know
how to help our kids in our communities.
And State agencies should be required to develop realistic
and working interagency agreements that really can coordinate
services and braid the funding streams. Such agreements should
require that families have a voice and choice in decision
making. They should allow the use of existing Federal funds to
pay for home and community-based services, to help pay for
family supports, and to enable families to stay together so our
kids can graduate from school, so they can enjoy friendship
like their peers, participate in community life, in other
words, to be just like any other American kid. Thank you.
Chairman Collins. Thank you very much. Ms. Seltzer.
TESTIMONY OF TAMMY SELTZER,\1\ STAFF ATTORNEY, BAZELON CENTER
FOR MENTAL HEALTH LAW, WASHINGTON, DC
Ms. Seltzer. Good morning, Madam Chairman. I am a staff
attorney for the Bazelon Center for Mental Health Law and I
want to thank you very much for the opportunity to come here
and share what we know about the custody relinquishment
problem. I applaud you for holding today's hearing and for your
role in requesting the GAO study on custody relinquishment with
Representatives Kennedy and Stark. I was particularly moved by
the panel before us, to allow the mothers to put a human face
on this devastating problem. That is not done often enough.
---------------------------------------------------------------------------
\1\ The prepared statement of Ms. Seltzer appears in the Appendix
on page 100.
---------------------------------------------------------------------------
Custody relinquishment has been a longstanding concern of
the Bazelon Center. We have provided technical assistance to
stakeholders, including States, and we have produced two
reports on the issue. Every Committee member should have an
executive summary of our ``Relinquishing Custody'' report, and
if you don't have a copy of our newest publication, ``Avoiding
Cruel Choices'' that talks more in detail about Medicaid, we
would be happy to get you copies of those.
These reports highlight the two main culprits in this
custody relinquishment problem. First, access to appropriate
and timely mental health services and supports, both in the
public and the private sectors. And the related second issue is
a lack of oversight for existing programs that can and should
be providing these services and supports.
Custody relinquishment is all the more tragic because it is
preventable. It does not and should not have to happen to a
single more child. During my testimony, I will describe how the
Senate can address the access issue by passing the Family
Opportunity Act, by enacting insurance reform, and preserving
and strengthening the Individuals with Disabilities Education
Act, or IDEA. I will also underscore the importance of
improving Federal oversight of another aspect of the Medicaid
program, the TEFRA or Katie Beckett option.
Today's hearing will describe our Nation's failure to meet
the needs of families with children who have emotional and
behavioral disorders, a failure, as we have heard, that is
tearing apart families and putting children at risk. It is our
hope that these proceedings will encourage you and your fellow
lawmakers to support specific legislative fixes to end this
unnecessary tragedy.
I believe there has already been quite a bit of overview of
the custody problem. The GAO study documented over 12,000 cases
in the year 2000 alone of children who ended up in the child
welfare and juvenile justice systems just because they needed
mental health services. We know that the GAO findings are just
the tip of the iceberg.
Custody relinquishment has been documented in at least half
the States. A survey found that 23 percent of parents who have
children with serious emotional and mental problems were told
that they needed to give up custody of their children to get
services, and one in five families actually did.
At the Bazelon Center, we consistently hear from families
that when they seek help for their children, they are offered
none. Like the mothers who appeared before you, they are
encouraged to call the police to document the problem or they
are pushed to give up custody to the foster care system.
Ultimately, children who need the most emotional support and
stability are being ripped from their homes to live with
complete strangers. This appalling practice must end.
A variety of barriers prevent parents from accessing
appropriate mental health treatment. Custody relinquishment is
largely the failure of all child-serving agencies, but two in
particular, mental health and the education systems. They have
a primary responsibility of addressing children's problems
before they reach a crisis level. And the single most important
obstacle that pushes families into giving up custody is a lack
of access to appropriate and timely mental health services and
supports.
It is clear that mental health is not a public health
priority, as I believe Congressman Kennedy mentioned. Parents
have to jump through myriad hoops to get the most basic
services for their children. Based on the President's
Commission and the Surgeon General's report, there is no doubt
that the public mental health system is underfunded and crisis,
rather than prevention, driven. In many cases, the lack of
appropriate mental health care leads to a high use of expensive
and unnecessary hospital and institutional use, money that
could be used to help children stay at home with their
families.
Parents of children with mental or emotional disorders
often struggle financially to pay for services and supports
their children need. Some parents lack insurance, either public
or private. A growing number of children in this country are
underinsured, with minimal coverage for mental health services.
Over 90 percent of private insurance plans carry
limitations and restrictions on mental health care, such as
limiting the number of outpatient sessions or limiting the
number of inpatient days that are covered, limitations that do
not appear in physical health care benefits. Moreover, private
insurance plans do not cover the full array of intensive
community-based rehabilitative services that children with the
most severe mental or emotional disorders need, services that
can be offered under Medicaid.
Students with emotional and behavioral disorders have been
recognized among the most under-identified and under-served
students with disabilities. Data suggests that schools may be
failing to correctly identify four-fifths of children with
mental or emotional disorders serious enough to adversely
affect their educational performance. And even when students
with emotional and behavioral problems are identified as
needing services, schools often fail to deliver the positive
behavioral supports required by the 1997 IDEA Amendments,
interventions that have been proven to reduce behavior problems
and improve students' chances to succeed in school.
Every parent that we heard from today and every parent that
the Bazelon Center has ever come into contact with who has been
faced with the decision to relinquish custody describes a
deteriorating school situation as a significant factor in their
decision.
So the situation is bleak, but the good news is that
custody relinquishment doesn't have to happen. Public policy
alternatives exist that could rescue families from the awful
choice of giving up custody to the State or seeing children go
without needed care.
Congress has bipartisan legislation before it right now,
which, Madam Chairman, you mentioned, would take two giant
steps toward preventing custody relinquishment. The Family
Opportunity Act would, number one, help expand Medicaid
coverage to children whose families would otherwise not be
eligible, and number two, it would give States greater
flexibility to use the home and community-based waiver to serve
mental illness with serious emotional and behavioral disorders.
The Family Opportunity Act has maintained high bipartisan
support for more than 3 years, but it has not yet become law.
It would remove the barriers that today keep thousands of
families from being able to meet their children's serious
mental health needs. Last Congress, the Senate Finance
Committee favorably reported the bill out of Committee. It is
time for Congress to finally enact this important legislation.
The home and community-based services waiver is a critical
tool that many States have failed to take advantage of because
of obstacles that Congress has the power to eliminate. The
three states that have taken advantage of this waiver, Vermont,
Kansas, and New York, have found that they have been able to
serve children in their homes at about half the costs that they
were spending for institutional care.
Unfortunately, Federal law has not kept pace with the
change in practice. When the waiver statute was first written,
most children with emotional and behavioral disorders were
served in psychiatric hospitals and that is the kind of care
that the statute covers. Now, most children are being served in
residential treatment centers and that is not what the statute
explicitly talks about and that is a fix that would be handled
by the Family Opportunity Act.
Insurance reform is another area where Congressional action
is necessary. For parents who have insurance, Congress should
ensure that insurance companies cover the range of mental
health services that would prevent custody relinquishment and
cover them without arbitrary limits. Enacting mental health
parity legislation, like the Wellstone Act, is an important
first step, but it is clearly not all that needs to be done in
the area of insurance.
IDEA is currently in the process of reauthorization.
Research demonstrates that the use of positive behavioral
interventions and supports can significantly reduce discipline
problems and ultimately result in school success for children
who, right now, are dropping out of school and failing in
school. We support Senate Bill 1248 with one exception. The
Senate bill, unlike the House legislation, requires a
behavioral assessment, but it requires only a general
assessment rather than the functional behavioral assessment
that is currently required and we would ask that the term
``functional'' be restored.
And finally, TEFRA oversight. The TEFRA option is an
important option that allows States to cover home and
community-based services for children who are at risk of
hospitalization. It is the most underutilized facet of Medicaid
that I can imagine, with services being offered to children
with emotional and mental disorders in only ten States out of
50 plus the District of Columbia. I mean, it is shocking that
children with the most serious needs, who face the greatest
risk of custody relinquishment, are not being served, not even
having the opportunity to be served in 40 States.
In conclusion, many States are struggling to address the
custody relinquishment tragedy, but they cannot do it on their
own. They need the help of the Federal Government to remove the
obstacles that are in their way to address this problem.
I want to thank you for holding this important and timely
hearing. The Committee's oversight jurisdiction on Federal
agencies that serve children is critical to fostering needed
collaboration at the Federal, State, and local levels.
Far too often, in order to get essential mental health
services for their children, caring parents have to choose
between poverty and giving up the children that they love. Too
many children with mental or emotional disorders and their
families have suffered too long for the system's failures.
I end by stressing that custody relinquishment is not a
rational choice for society and it is no choice at all for
families. I urge you to take the necessary legislative action
to ensure greater access to mental health services and supports
and greater oversight to ensure that existing programs are used
to their fullest potential to help families at risk of custody
relinquishment.
I thank you, and I am available to answer any questions you
have.
Chairman Collins. Thank you very much for your excellent
testimony. Dr. Adams.
TESTIMONY OF JANE ADAMS,\1\ EXECUTIVE DIRECTOR, KEYS FOR
NETWORKING, TOPEKA, KANSAS
Ms. Adams. Thank you for allowing me the opportunity to
speak to you today. I am going to title my testimony, ``No
Place Like Home,'' and in Kansas, we take those words very
seriously. [Laughter.]
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\1\ The prepared statement of Ms. Adams with attachments appears in
the Appendix on page 115.
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I represent hundreds of people from Kansas who have been
working since 1984 on developing an infrastructure to allow
parents choice and opportunity to raise their own children. I
am also the Vice President of the Federation of Families for
Children's Mental Health.
My invitation to speak to you asked that I talk to you
regarding the implementation of the Kansas home and community-
based services waiver. Before I talk about Kansas, I want to
share with you briefly my perspective from being a member of
President Bush's New Freedom Commission on Mental Health.
Last year, President Bush directed the Freedom Commission
to make recommendations which put in place and extend the
protections of Olmstead so that people with disabilities have
the right to live, work, learn, and participate in their homes
and communities. For the last year, as part of the Commission
work, we heard testimony from families and youth across the
country about their personal experiences trying to penetrate
the disarray of what we call the mental health system. They
told us of their efforts to access opaque and complex non-
systems, the difficulty to even understand service options, let
alone secure access to grossly underfunded programs. Family
members talked to us about discontented and overwhelmed
providers, constantly changing and conflicting regulations, and
they talked about losing their children to child welfare and
State juvenile authorities.
Parents also talked about their fear that in working with
agencies to get services for their children, they might lose
their children. Parents told the Commission, and Kansas parents
have told our legislature, that without financial resources to
access mental health care, they are forced to turn to child
welfare with the promise, implied or explicit, that mental
health services will follow, or by default, families lose to
the juvenile authorities when services are not available.
Behaviors escalate to the point that law enforcement gets
involved.
In Kansas, one problem with placing a child in foster care
is that the child welfare system is not designed to provide
mental health services. It is designed to provide a safe place,
a home, usually. Child welfare providers in Kansas are not
Medicaid mental health providers. In Kansas, a child welfare
contractor who determines that a child in foster care has a
diagnosis must then go back to a mental health center to
confirm that diagnosis and assess eligibility for services in
that system.
If the center agrees the child needs services, Medicaid
funds the services. If not, the private contractor in Kansas
must pay for services out of a capitated payment from the State
for living allowance. I can tell you, this seems to deter
advocacy for mental health services in the foster care arena.
In either case, when a child with mental health needs is
placed in foster care, there is little or no involvement of the
biological family in the child's mental health treatment. The
child is frequently moved away, and it is likely to a different
mental health center cachement area where different providers
than he or she knows and who are too distant to the family are
now going to try to work with the child. This is ten times
worse in the juvenile justice system. Families are virtually
locked out of participating.
The Freedom Commission has ended and the White House is
anticipating a report which I hope may influence the
development of services for the next decades. The Commission
will recommend the development of full and comprehensive arrays
of community services, developed in concert with the families
and the youth who receive them.
Compelling testimony and a new awareness of the national
perspective has left me an increased awareness of what the
Kansas model can offer this Nation in the area of mental
health. I am excited to explain the Kansas waiver to you, and I
care that you know that the waiver is only one part of a full
system which allows families to access services in Kansas.
Today, though, I will talk about the waiver.
The waiver does two things in Kansas. One, it extends the
service array, or the range of services, and it also expands or
extends Medicaid eligibility to families. The expanded range of
services includes, in addition to the usual Medicaid options,
like attendant care and in-home-based therapy, it also adds
wrap-around facilitation, parent support, respite care, and
independent living supports.
Expanded eligibility means that in the waiver, only the
child's income, not the parent income, is considered. This
means that in Kansas, when a parent is faced with the imminent
possibility of placing a child in a mental hospital, that
parent may elect to keep the child at home and in school in the
community where they live with Medicaid-funded supports.
With the waiver and the recognition of our legislature that
children do better, are better, and demonstrate remarkably
better outcomes in homes than any other setting, we are making
progress. Since only two other States have adopted the home and
community-based services waiver for children, New York and
Vermont, I believe I must describe briefly how we secured the
waiver, and one of the people is in this room who helped us
with our legislature secure this waiver and that person is Mary
Giliberti, formerly from the Bazelon Center.
We have had the waiver since 1998. It was evaluated by
Medicaid in fiscal year 2000 and is now in place until fiscal
year 2005. For Kansas, several agendas seemed to converge at
the same time. We have long practiced the wrap-around
philosophy and principles of planning and serving children with
parents as partners in service delivery and evaluation.
SAMHSA awarded Keys for Networking, the State family
organization, my organization, and Social and Rehabilitation
Services, one of the first national grants in 1984 to develop a
State infrastructure to begin to provide a health system of
services for children. SAMHSA had also funded in Kansas two
federally-funded demonstration grants. Those sites were in
Wichita, which is an urban community, and in rural Southeast
Kansas. What is important about that is with the demonstration
sites, SAMHSA provided a means to develop, first of all, the
array of community-based services, so we had services in place.
And then SAMHSA also provided the means to collect data to
profile service effectiveness.
By 1997 in Kansas, we knew what effective services should
look like. We knew the cost per child in the community and we
knew the cost per kind of service to maintain a child in the
community. This is important, because one of Medicaid's
requirements for the waiver is that it cost no more to serve a
child in the community than in the hospital. We had the data to
show what Medicaid calls ``cost neutrality.'' We had to
demonstrate that we could serve children in the community at no
greater cost than it cost to serve them in the hospital. We had
the services, and we had just made a decision to close a mental
hospital so we had dollars we could divert to the community.
With a full alliance of mental health providers, Social and
Rehabilitation Services, and Keys for Networking, we moved the
legislature to fund the waiver and a family-centered system of
care. I mention this alliance because it is not often in Kansas
that we all agree on exactly what we want. We showed the
legislature cost figures. We showed them charts of outcomes,
and we provided testimonies from families.
I want to move for you to page four of my testimony, which
delineates in a nice little table the cost of services, and as
I move down the chart, I want you to notice that the farther
you go away from home, the more expensive the treatment,
comparing children served on our HCBS waiver at $35 a day to
foster care, juvenile detention, and State mental hospitals,
which go as high as $165,000 a year. This information is
important. Every time we serve a child in the home in Kansas,
we save the State money and we save families.
And we have outcomes to demonstrate what happens with these
children on the waiver. Table 2 outlines for you and compares
non-waiver children who are served in the community with
children who are on the waiver, and I want to point out, as you
look at those numbers, it is important to know that the waiver
children are the most seriously mentally ill children who are
living in our community, and the data shows that the outcomes,
in fact, exceed those of other children, both in their
permanent home placements, 97 percent compared to 95 percent.
They are slightly lower on law enforcement, without law
enforcement contacts. They are doing significantly better on a
test, an instrument called the Child and Behavior Checklist.
Their grades are better, and their attendance at school is
better. The waiver does work.
Finally, I want to say, does the waiver stop custody
relinquishment? We think so. We believe effective community-
based services stops the relinquishment of custody.
What I am here, though, to ask you is since there is
apparently difficulty in that other States are not accessing
this same waiver, why does there need to be a waiver? Why don't
we just make this possible across this country?
Thank you very much for the opportunity to share this
program and to speak with you today.
Chairman Collins. Thank you very much, Dr. Adams.
Your testimony is certainly compelling. We know from our
previous witnesses and from Ms. Osher that parents want, if
possible, to be able to care for their children at home.
Parents want to retain custody of their children. They love
their children. They want to be with their children.
The information from Kansas shows that the care of children
in a community-based setting leads to better outcomes. Your
information also shows that it is significantly less expensive
to care for children in community-based settings. So why do you
think that so few States have taken advantage of the waiver?
You have made a very good point that why should there even have
to be a waiver process, but putting that aside for a moment,
Kansas, New York, and Vermont are the three states that are
known for having good systems using the waiver. Why do you
think States are reluctant when it leads to lower costs and
better outcomes?
Ms. Adams. I am not a Medicaid expert, and maybe that is
precisely the problem. Many people who I talk to fear Medicaid
rules and fear the complexity of joining this effort. I also
understand that the cost neutrality issue is a huge issue and--
--
Chairman Collins. The fact that it has to be neutral under
Medicaid for the waiver to be granted?
Ms. Adams. Yes, and that you can't just say it is neutral.
You have to prove that it is neutral, and in my opinion, States
who have had benefit of the SAMHSA demonstration sites and
system of care dollars have then access to not only create
community based services, but also demonstrate with real
numbers and real figures what it does cost.
Chairman Collins. Ms. Seltzer, I want to ask you the same
question. Given the very positive results of the states that
have used this waiver for a community-based system, why don't
you think more States are taking advantage of it?
Ms. Seltzer. I think there are at least two significant
reasons. One of them, I would characterize as stigma. I think
just about every State uses the same waiver for children who
have developmental disabilities, but they don't use it for
children who have emotional and behavioral disorders, and part
of that is because of what earlier witnesses talked about.
These children are being viewed as bad children as compared to
children who have mental health needs, just like any other
health care needs.
The other reason is the reason that I talked about, a
problem that the Family Opportunity Act can solve, and that is
the cost neutrality issue. The States have to be able to show
that they are saving money. Well, if they have very few
children in hospitals, which is the only way they are able to
show that, then it is going to be very difficult for them. If
they can use the figures from residential treatment centers,
they would have a much easier time showing cost neutrality, and
that is why it is so important that the Family Opportunity Act
be passed.
Chairman Collins. With the Katie Beckett option, also, is
there the issue that states elect this option far more often
for children with physical disabilities or physical illnesses
as opposed to emotional or behavioral illnesses?
Ms. Seltzer. You make a very good point. Let me add to my
previous comments that Maryland applied for the home and
community-based waiver recently and was turned around, so that
is just another illustration of the obstacles that States face
even when they want to address the issue.
With the Katie Beckett option, you are absolutely correct.
Of the 20 states that offer the Katie Beckett option, only ten
are serving children whose primary need is emotional and
behavioral. And one of the biggest problems is that the States,
when they are defining the children who are covered, often
don't even mention children with emotional and behavioral
disorders, even though the statute does not limit the option to
children who have physical problems.
So parents who are looking for resources, like one of the
parents who was up here earlier, aren't even going to know
about the Katie Beckett option and that it is available to them
because most of the information that is made available to
parents doesn't even mention emotional and behavioral
disorders. So this is an area, too--the Bazelon Center has done
a survey and found that the States are desperate for
information about the option and how to use it and how to make
it more available to children with emotional and behavioral
disorders.
Chairman Collins. Ms. Osher, do you have any insights that
you could share with us on why States aren't taking advantage
of the available waivers?
Ms. Osher. I can give you a parent's perspective on that. I
haven't done the research that the Bazelon Center has and I
don't have all of that research experience behind it, but I
think what the families are saying supports the research
experience and also the positive experience they had in Kansas.
The issue is that--there are two parts of it. One is
families are not being given information about any of these
services being available, and we heard that a lot. The second
is that the communities don't have the services in place in
order to provide the home and community-based services, even if
they had provisions for the waiver in terms of their policies
and their funding streams.
So the advantage is--that made it possible for Kansas to
get to a home and community-based waiver had to do with the
fact that there were special extra resources available to them
to develop--it was like seed money and an opportunity to try to
build services in communities where there weren't any services,
combined with methodologies to evaluate the cost of those
services and demonstrate their effectiveness for kids so that
they could create the data and the argument in order to have
it. If we don't have services in so many of our communities,
States may not want to go after a waiver without any money to
bring the services up.
Chairman Collins. I am going to yield to Senator Pryor. I
do have just a few more questions, so I am going to come back.
But Senator Pryor?
Senator Pryor. Thank you, Madam Chair. I have a couple of
questions and then some comments, and the questions would be, I
assume from what I am hearing today is that even though most
parents want their children living at home, I assume there are
circumstances in which everyone agrees the child should live in
some sort of institution. Is that correct?
Ms. Seltzer. Well, from our experience, most parents, most
would definitely want their children to be at home if they can.
One of the biggest problems we see with custody relinquishment
is the systems fail for so long--I mean, you heard parents
talking about 3 years, 5 years--that by the time they get to
the point where they are desperate enough to even consider
custody relinquishment, residential treatment may be the only
alternative. But----
Senator Pryor. But they could still have legal----
Ms. Seltzer [continuing]. But if prevention services had
been provided by the mental health and the education systems,
we probably wouldn't be talking about those institutional
services. They would not be needed.
Senator Pryor. The way I look at it, as well, releasing
custody is a separate issue because you could still have legal
custody of someone and them be in an institution, I assume, but
I will explore that on my own.
Give me those statistics again on TEFRA. How many States
are utilizing TEFRA?
Ms. Seltzer. Twenty States right now are utilizing TEFRA,
and only ten of those States have children who are accessing
the program whose primary need is for emotional and behavioral
health care.
Senator Pryor. Do you have an explanation for that, why
only 20 States and why only ten States?
Ms. Seltzer. The reason that we were given by States when
we took a survey of the states that don't have the option, that
haven't selected it, is because they don't know very much about
it and they would like more information about it. The states
that have the option that are not serving children with
emotional and behavioral needs, I think stigma is a huge part
of it, ignorance on behalf of parents because the States are
not informing them that children with emotional and behavioral
disorders can and should be served under this program is a huge
problem. How can you advocate for something that you don't even
know you are entitled to get?
Senator Pryor. Let me sort of sum up some of my
observations today and just see if you all agree with these. I
wrote down about six observations based on what you all have
said and what the mothers said a few moments ago.
First is that most parents want their children to live at
home or in a facility in the community, with the strong
preference on living at home.
Second, there is just not enough money in the system.
Third, private insurance is inadequate.
Fourth, the existing agencies that are out there supposedly
providing these services are not communicating with each other
and oftentimes not with the parents and the public about what
is available.
Fifth, mental illness in children, and adults, as well, but
mental illness in children is very stressful on families, and
the icing on the cake seems to be when parents have to give up
their rights to their children.
And sixth, mental health needs are more often than not
treated as second-rate conditions.
So I think when I hear all those things and those
observations, I think the bottom line I would like to apply to
this is the system we have now just isn't working very well at
all. Do you all have any comments, or do you disagree with any
of those statements? Do you want to add anything?
Ms. Osher. Right on.
Senator Pryor. Do you want to add anything to that?
Ms. Adams. I would like to add that the waiver for us is so
magic because it does not take anything away from families. It
allows families full choice. At the point where, if my child
were ready and I might be thinking about placing them, her, in
a hospital, the waiver kicks in and I am to be given a choice
of whether or not I want to proceed with that or I want to
choose to keep her in my home community and have Medicaid pay
for services.
Ms. Seltzer. Senator Pryor, I want to echo what Trina Osher
said in terms of ``right on.'' I think your observations are
quite accurate. I do want to add the positive note that this
problem is fixable. We are spending money right now very
poorly. We are--if this was a private investment for your
retirement, you would probably want someone arrested because
this is not a good use of taxpayer dollars and it certainly is
a great disservice to the children and their families. So I
think that we would encourage you to do what you can to fix
this problem as soon as you can because it really is a mystery
to me why this tragedy has not been resolved or addressed any
sooner than it has been.
Senator Pryor. I am glad you added that last little part
that it is fixable. Madam Chair, I look forward to working with
you on trying to fix it and make it better, and thank you for
having this hearing.
Chairman Collins. Thank you very much, Senator Pryor, for
your participation, and I look forward to continuing our
efforts in this regard.
Ms. Seltzer, I want to bring up one more issue before I let
you all go. You have been an extraordinary source of
information about this problem.
I know the Bazelon Center has done at least two studies
showing that custody relinquishment is a serious problem. We
now have the GAO report that demonstrates that almost 13,000
children in some, I think it is 19 States where there was, say,
a voluntary custody relinquishment in order to obtain services.
We have heard the first-hand testimony of the mothers today. So
we know that this is a serious problem.
Yet, it is my understanding that Federal law does not
require custody relinquishment to obtain mental health services
and that it even has specific language allowing voluntary
placements. In fact, my staff did some research that showed
that the Department of Health and Human Services sent out
guidance to the States on this issue--many years ago, I might
add, back in the 1980s. Why do you think there is so much
misunderstanding among the State agencies about whether or not
custody relinquishment is necessary in order to tap into these
services?
Ms. Seltzer. I am glad that you brought that up. It is
astounding that States still think that they have to require
parents to give up custody in order to access what are called
4(e) dollars to provide mental health treatment to children. I
think more and more States are becoming educated about that and
they are engaging in the practice of voluntary placements. I do
want to point out that that is not necessarily the answer----
Chairman Collins. It is not ideal, either, I realize.
Ms. Seltzer. It is wonderful that parents aren't forced to
give up custody, but a voluntary arrangement doesn't
necessarily create more services in the community that helps
you keep your kids at home. It also still forces you to go
through a system, the child welfare system, which is not an
appropriate system for you to be in. You haven't abused or
neglected your child. You just need mental health services. We
wouldn't require a child with diabetes to go through a court or
to go through any other sort of hoop like that in order to get
basic health care needs met, and that should not happen for
children with emotional and behavioral disorders, either.
Chairman Collins. I agree with your comments. I am,
however, astounded at the lack of coordination and
communication among the various systems, agencies, programs,
and one of the recommendations the GAO made was to have an
interagency task force so that we can start ensuring that there
is coordination and communication.
I am struck so much by the testimony that we heard earlier
of parents' desperate search for help, and Cynthia telling us
that after 2 years, she finally located the program that has
been enormously helpful to her twin sons. But it shouldn't be a
struggle for families to tap into the programs that they need.
So clearly, there is an outreach, education, and
communication component of this problem in addition to the lack
of community-based services and other issues. Would you agree
with that? Is there a problem in terms of communicating with
parents?
Ms. Seltzer. Absolutely. I think Trina Osher mentioned
that, as well. We are dealing with bureaucracies here and it is
very challenging to get any bureaucracy to change something
that they have been doing for years and years and years. I
think it is important for us to try to change. It would be
wonderful if parents had one phone number, one place they could
go to get all of the information they needed about what
services were available for their children.
Chairman Collins. All three of the mothers are nodding in
agreement to that.
Ms. Osher. Can I comment on that for a second, too, please?
Chairman Collins. Certainly, Trina.
Ms. Osher. Tammy mentioned particularly the educational
system and the mental health system as being places where our
children need to get services and where they can get services
and there are mechanisms in place to help them. Just those two
systems have different definitions of who is eligible for
services. They have different mechanisms for paying for those
services. They have different criteria about what needs to be
provided. They have different mechanisms for making decisions
about what will be provided and accounting for the outcomes and
so forth. They don't speak the same language.
It is not just miscommunication. They are in two different
vocabularies entirely, so anything that can be done to review
existing Federal laws in any child-serving system to develop
across the systems a common definition of who our children are
and a common goal about what we want to accomplish for our
children and a common respect for participation of families in
the decision making about what those services will be for their
children without families having to figure it out.
I mean, I do a lot of training for families and I think it
is appalling in some ways that I have got to read them all
these different Federal definitions and explain what they are.
That is not the job of a parent, to know all those definitions.
We are not supposed to be lawyers, with all due respect to Ms.
Seltzer---- [Laughter.]
And anybody else who is in that honorable profession. It is
our job to love and care for our kids, to make them oatmeal in
the morning and to read them bedtime stories and to make sure
their homework is done and give them kisses and take them on
vacations. And I think I will end right there.
Chairman Collins. Thank you. I want to thank all of you for
being here with us today. The testimony has been extremely
valuable, and I hope the three of you as well as the parents
from whom we heard earlier will help us make a difference to
the families with children with mental illness.
A lot of the elements are out there, the waivers, the
experience of States, in particular States, particularly
Kansas, the Family Opportunity Act, insurance reform, wider use
of waivers by States. The State of Maine, for example, has not
applied for the waiver that Kansas has used so effectively, so
we need to encourage States. I think we need a program that
provides some grant money and technical assistance to States to
provide a seamless approach to mental health services for
children.
There is so much that needs to be done, but one thing is
certain. No parent should have to give up custody of a child in
order to obtain the services that a child needs. I think that
that is the goal that we should be working toward, and by
putting these elements in place, I am convinced that we can
make a real difference.
So I hope that the three of you will continue to work with
us as we seek to put together a legislative package that will
include the Family Opportunity Act and broader use of waiver
programs and wrap-around services, whatever is needed, because
I think this is a problem that we can make tremendous progress
on without enormous infusions of dollars. As one of our
witnesses said earlier, the money is there in many cases. We
just make it too difficult to tap into. Or, by using home-based
and community-based programs, we can serve more people at a
lower cost and keep them where they want to be, keep these
children at home.
So I think, Dr. Adams, you said it best when you said,
``There's no place like home,'' and that should be our goal for
children for whom that is the appropriate response. For other
children, a residential care facility is going to be the
answer. We need to have a flexible system that meets the needs
of these children.
So thank you so much for your assistance to us. We will
continue to call upon you.
I want to thank all of our witnesses today for their
assistance, particularly the three mothers who shared their
unique perspectives on the challenges faced by families of
children with mental illness. Theresa, Cynthia, and Patricia
were so moving in their testimony, and you helped us gain a far
better understanding of the challenges and struggles that
families face. You are a real inspiration to those of us who
are committed to making a difference in this area.
On Thursday, the Committee will hold a second hearing. We
want to hear from the General Accounting Office and we want to
hear from the Federal agencies that have responsibilities in
this area, as well. So if any of you have any questions you
would like us to pose, please do not hesitate to send them
along.
I also want to thank my staff, which has worked very hard
on this set of hearings, particularly Priscilla Hanley, who is
my Senior Health Care Policy Advisor.
The record for this hearing will be held open for the
submission of additional materials, but the hearing is now
adjourned. Thank you.
[Whereupon, at 12:02 p.m., the Committee was adjourned.]
NOWHERE TO TURN: MUST PARENTS RELINQUISH CUSTODY IN ORDER TO SECURE
MENTAL HEALTH SERVICES FOR THEIR CHILDREN? PART TWO: GOVERNMENT
RESPONSE
----------
THURSDAY, JULY 17, 2003
U.S. Senate,
Committee on Governmental Affairs,
Washington, DC.
The Committee met, pursuant to notice, at 9:31 a.m., in
room SD-342, Dirksen Senate Office Building, Hon. Susan M.
Collins, Chairman of the Committee, presiding.
Present: Senator Collins.
OPENING STATEMENT OF CHAIRMAN COLLINS
Chairman Collins. The Committee will come to order.
Good morning. The is the second of two hearings that the
Committee on Governmental Affairs is holding this week to
examine the difficult challenges faced by families of children
with mental illness. On Tuesday, we heard compelling testimony
from three such families who told the Committee about their
personal struggles to get mental health services for their
severely ill children. The mothers who testified 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 have to
make. No parent should have to give up custody of his or her
child just to get the services that that child needs. The
testimony that we heard earlier this week made it clear that
custody relinquishment is merely a symptom of a much larger
problem, which is the lack of available, affordable and
appropriate mental health services and support systems for
these families.
The mothers described barrier after barrier that they faced
in getting care for their children. They told us about
limitations in both public and private health insurance
coverage for mental illness. While two of the mothers made too
much money to qualify for Medicaid, their private health plans
had coverage that was more restrictive for mental illness than
it was for physical illness. As a consequence, their health
care benefits were quickly exhausted and they were faced with
the prospect of paying for the cost of their children's care,
cost that amounted to hundreds of thousands of dollars. This is
more than all but the very wealthiest families could afford.
They also talked about the lack of coordination and
communication among the various agencies and programs that
serve children with mental health needs. One mother, 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 her sons.
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 finally has an answer for them. It simply
should not be such a struggle for parents to get services and
treatment for their children.
Today, we will first here from the General Accounting
Office which recently completed a report that I requested with
Representatives Pete Stark and Patrick Kennedy, entitled
``Child Welfare and Juvenile Justice, Federal Agencies Could
Play a Stronger Role In Helping States Reduce the Number of
Children Placed Solely to Obtain Mental Health Services.''
The GAO surveyed child welfare directors in all States and
the District of Columbia as well as juvenile justice officials
in 33 counties with the largest number of young people in their
juvenile justice systems. According to the GAO survey, in the
year 2001 alone parents placed more than 12,700 children into
the child welfare or juvenile justice systems so that these
children could receive mental health care. Moreover, the GAO
estimates that this is likely just the tip of the iceberg since
32 States, including five States with the largest populations
of children, did not provide the GAO with any data.
There have been other studies indicating that custody
relinquishment problems are pervasive. In 1999, for example,
the National Alliance for the Mentally Ill released a survey
which found that 23 percent, or more than one in four of the
parents surveyed, had been told by public officials that they
needed to relinquish custody of their children to get care.
Moreover, one in five of these families had done so.
We will also hear today from Federal agencies that have the
responsibility for helping with children with mental health
needs. We will have the opportunity to hear how these agencies
work to respond to the needs of children with serious mental or
emotional disorders and the needs of their families. Finally,
we hope to identify ways that these programs and agencies can
better work together to develop a more coordinated system of
care for these children at both the Federal and State level. We
want to ensure that parents such as the ones that we heard from
on Tuesday will know where to turn for help, the help that
their children so desperately need, without having to sever the
ties that bind families together.
I am very pleased to welcome today our first witness,
Cornelia Ashby, who is the Director of Education, Workforce,
and Income Security Issues at the General Accounting Office. I
mentioned the GAO report that the two congressmen and I
commissioned. It has provided us with a very important overview
of the current barriers that prevent families from accessing
the mental health services that their children need. I am very
pleased that the director, Ms. Ashby is able to be with us
today to present the findings of the report in more detail. I
would ask, Ms. Ashby, that you proceed. Thank you for being
with us.
TESTIMONY OF CORNELIA M. ASHBY,\1\ DIRECTOR, EDUCATION,
WORKFORCE, AND INCOME SECURITY ISSUES, U.S. GENERAL ACCOUNTING
OFFICE
Ms. Ashby. Thank you, Madam Chairman. Thank you also for
inviting me here today to discuss our April 2003 report on
children being placed inappropriately in the child welfare and
juvenile justice systems in order to obtain mental health
services. My testimony today will focus on three issues: the
numbers and characteristics of children voluntarily placed in
the child welfare and juvenile justice systems to receive
mental health services; factors that influence such placements;
and State and local practices that may reduce the need for some
child welfare or juvenile justice placements.
---------------------------------------------------------------------------
\1\ The prepared statement of Ms. Ashby appears in the Appendix on
page 136.
---------------------------------------------------------------------------
I use the term placed to refer to instances in which
parents, in order for their children to receive mental health
services, have voluntarily taken or declined to take some
action that has resulted in their children being placed in the
child welfare system or arrested for behaviors related to their
mental illnesses. Because information is not available, we
could not determine whether parents subsequently released
custody of their children to obtain the services.
My comments are based on our findings for the April report.
As you explained, Madam Chairman, in conducting that study we
analyzed responses to our survey of State child welfare
directors in all States and the District of Columbia, and our
survey of juvenile justice officials in 33 counties in the 17
States with the largest populations of children under age 18.
In addition, we interviewed officials of child-serving
agencies, caseworkers, and parents in six States--Arkansas,
California, Kansas, Maryland, Minnesota, and New Jersey--and
judges in each State we visited except Minnesota. We also
observed programs that State officials identified as model
programs in those six States, interviewed key Federal officials
and national experts, and researched State laws and regulations
regarding voluntary placement and relinquishment of parental
rights.
State child welfare and juvenile justice officials who
responded to our survey estimated that in fiscal year 2001
parents in their jurisdictions voluntarily placed over 12,700
children in child welfare or juvenile justice systems so that
the children could receive mental health services. Nationwide,
this number is likely higher because officials in 32 States,
including the five States with the largest populations of
children, did not provide us with estimates. Officials in 10 of
those States indicated that although they did not have an
estimate to provide, such placements occurred in their State.
Also, we surveyed juvenile justice officials in only 33
counties, and officials in three did not provide estimates but
also indicated that such placements occurred. Only estimates
were available because no Federal or State agency kept formal,
comprehensive records on children placed to obtain mental
health services. Although no Federal or State agency tracks
these children or maintains data on their characteristics,
State survey respondents indicated that placed children were
mostly adolescent males. Officials from State and county child-
serving agencies and parents we interviewed in the six States
we visited said that children who were placed had severe mental
illnesses, sometimes in combination with other disorders, and
their parents believed they required intensive treatment that
could not be provided in their homes.
Many of these children were violent and had tried to hurt
themselves or others, and the seriousness of their illness
strained the family's ability to function. Children who are
placed or at risk of placement come from families that span a
variety of economic levels. However, officials from State and
child-serving agencies in all six States we visited said
children from middle class families are more likely to be
placed because they are not eligible for Medicaid and their
families do not have the funds to pay for treatments not
covered by insurance.
Multiple factors influence parents' decisions to place
their children in the juvenile justice or child welfare systems
to obtain mental health services. Private health insurance
plans often have gaps and limitations in the mental health
coverage they provide, and not all children covered by Medicaid
receive needed services. Even when parents could afford mental
health services, some could not access services at times when
they needed those services because supplies of such services
were inadequate. In other instances, mental health agencies and
schools have had limited resources to provide mental health
services.
Also, they are required to serve children with a mental
illness in the least restrictive environment possible, which
can limit the alternatives available to parents who believe
their children need residential placements. In other instances,
parents have had difficulty obtaining all needed services for
their children in their communities because eligibility
requirements for services provided by various agencies differ.
Furthermore, some State and local officials and service
providers have misunderstood the role of their own and other
agencies and therefore have given parents inaccurate or
incomplete information about available services, thereby
compounding service gaps and delays.
Although few strategies were developed specifically to
prevent mental health related child welfare or juvenile justice
placements, State and local officials we interviewed identified
a range of practices in their States that they believe may
prevent such placements by addressing key issues that limit
access to child mental health services in their State. State
and local practices focused on three main areas: finding new
ways to reduce costs or to fund services; consolidating
services in a single location such as a school or community
center; and expanding community mental health services to
include a continuum of services ranging from early intervention
to crisis intervention and supporting families and encouraging
parental involvement in their child's care.
One cost reduction practice was to ensure that children
with lower level needs were served with lower level and less
expensive services, reserving the more expensive services for
children with more severe mental illness. Another involved
substituting expensive traditional mental health providers with
non-traditional and less expensive providers.
New ways of funding services included the blending of funds
from multiple sources, thus overcoming agencies' limitations on
the types of mental health services and placement settings each
can fund, and the use of flexible funds that have few
restrictions to pay for non-traditional services that are not
generally allowable under State guidelines.
Although States and counties are implementing practices
that may reduce the need for parents to place their children
with child welfare or juvenile justice agencies, many of the
practices are new, have been implemented on a small scale, and
only serve children in specific locations. Furthermore, their
effectiveness in achieving their multiple goals, such as
reducing the cost of mental health services, supporting
families, and helping children overcome their mental illnesses
has not been fully evaluated.
In our April 2003 report, we made several recommendations
to Federal agencies to reduce the inappropriate placement of
children in the child welfare or juvenile justice systems to
obtain mental health services. To determine the extent of such
placements, we recommended that the Secretary of Health and
Human Services and the Attorney General investigate the
feasibility of tracking these children to identify the extent
and outcomes of these placements.
To help reduce at State and local levels misunderstandings
of the roles and requirements of the multiple agencies with
responsibility for these children, we also recommended that the
Secretaries of HHS and Education and the Attorney General
develop an interagency working group to identify the causes of
the misunderstandings and to create an action plan to address
those causes. We further recommended that these agencies
continue to encourage States to evaluate their mental health
programs and that the Secretaries of HHS and Education and the
Attorney General determine the most effective means of
disseminating the results of these and other relevant studies
to State and local entities.
Madam Chairman, this concludes my statement. I will be
happy to answer any questions you may have.
Chairman Collins. Thank you very much, Ms. Ashby. I want to
thank GAO for conducting this study. I think it has been very
valuable in giving us a picture, an overview of what is going
on in several States. I also know from talking with the
families who have gone through the agonizing decision of
relinquishing custody, as well as talking to advocacy groups,
that they have taken comfort in the fact that GAO has found
this practice to occur in so many other States. Now they do not
take comfort in the fact that it is a good thing. It obviously
is a bad thing. But they hope that it will help build the case
for reforming the system.
So many of these parents have felt all alone as they have
gone through this struggle, and when they found out that nearly
13,000 children had been identified in the GAO study as being
placed in either the child welfare or the juvenile justice
system they realized that they are not alone. This is a problem
that cries out for attention at the State and Federal level,
and I thank you for that work.
I am convinced from what we have heard from experts at the
Bazelon Center and what you have said today that actually we
are greatly underestimating the number of children who have
been placed. Do you agree with that, given that only 19 States
responded?
Ms. Ashby. I do agree. As I explained and as is explained
further in our longer statement for the record, we did a survey
of the States and adding up the numbers for all those States
that responded--we only heard from 19 States and from 30 of the
33 counties that we had surveyed on the juvenile justice side.
We were told by some of the States who did respond but who did
not provide us with information that they knew such placements
occurred in their State, they just did not feel comfortable
with making any kind of estimate of how many.
Chairman Collins. That suggests that States are not
tracking these children. Is that correct?
Ms. Ashby. That is correct, they do not have a tracking
system at all for these children, although they track other
information about children that are in the child welfare system
and the juvenile justice system. They do not keep separate
records on children placed because of mental illnesses only.
Chairman Collins. I was interested, in reading your
testimony last night, in the chart on page 11, and there is one
on page 13 as well, that shows the variation from State to
State in the number of placements. For example, the estimates
varied widely. Kansas showed only 14 placements in the child
welfare system versus Minnesota which had 1,071; Indiana
reported none. You see the same kind of variations in the chart
on page 13 looking at the juvenile justice system.
We heard from an expert on Tuesday from the State of
Kansas, which is one of three States that is using a Medicaid
waiver to develop community-based and home-based systems that
may well explain the low number of placement in Kansas. So that
they are having what appears to be a fair amount of success
using this waiver to prevent parents from having to make this
awful choice.
But I have also heard that Minnesota has a number of
progressive programs in this area. So do you think that the
variation in numbers reflects both differences in how good a
job States are doing as well as whether or not they are
tracking? What is your analysis of the variations?
Ms. Ashby. First of all, none of the States are tracking
this particular population so the numbers are based on the
experiences of the respondent or the resources the respondent
had to perhaps get ideas from other people in the particular
agency. I am sure it does reflect both.
However, because it is based on, as I said, the personal
knowledge of the respondent, or the respondent and perhaps the
respondent's staff, I really do not think we can draw any
conclusions about the relative degree to which it happens in
various States, nor can we project nationally based on these
numbers.
Chairman Collins. One of the witnesses at Tuesday's hearing
indicated that a big part of the problem is that the various
Federal and State agencies with responsibilities for meeting
the needs of children with mental illness, her phrase was, they
do not even speak the same language. She said that there are
different definitions and terminology, there are differing
eligibility requirements, which you referred to in your
testimony, and they do not always understand what programs are
available in other agencies.
The mother from Illinois very eloquently testified about
searching for help for her twin sons and she finally, just
through sheer persistence, stumbled upon a State program, the
Community Residential Services Authority, that was tailor-made
to meet her sons' needs. But she found this program on her own.
She did not find it as a result of someone directing her to it.
Probably because it was funded through the State education
department, the officials in Illinois Department of Child and
Family Services, as well as officials in the Department of
Mental Health with whom she had been dealing, were not aware of
the program.
How common do you think that problem is? Did the GAO also
identify lack of coordination and knowledge as well as
misunderstandings among State and Federal officials as major
problems?
Ms. Ashby. It is definitely one of the issues we addressed,
problems we discovered at the State and local level. Now I will
say that at the Federal level, the Departments of Education,
HHS, and Justice have various means of coordinating with one
another and sharing information. They have issued guidance,
each department and agency, and the State and local agencies
under its purview have issued guidance. But in spite of that,
at the State and local level there seems to be a lot of
misinformation, a lot of confusion, a lot of just lack of
knowledge about the total scope of services that are available
to this population.
Chairman Collins. We found that there were State agencies
that were unaware that you could tap into certain Federal
programs without custody relinquishment.
Ms. Ashby. That is correct. There is no Federal requirement
that custody be relinquished. We definitely talked to some
people at the State and local level who thought there was such
a requirement.
Chairman Collins. It is so troubling to me that we hear
case after case where State officials have advised parents to
give up custody of their children truly believing that this is
necessary in order to tap into the help that the child needs,
when, in fact, it is my understanding that the Department of
Health and Human Services has twice issued guidance telling
States that that is not the case.
Ms. Ashby. Yes. One of our recommendations, of course, was,
at the Federal level, that the major agencies involved try to
figure out a way to just disseminate more information,
different types of information, perhaps use different media for
disseminating the information to State and local officials so
that they understand not only their own programs but the other
programs available to parents and how different programs
together can perhaps provide the full range of services that a
particular family needs.
Chairman Collins. One of the family members who testified
also recommended the kind of interagency task force that you
have proposed. What was the reaction of the Federal agencies to
your recommendation for an interagency task force?
Ms. Ashby. In commenting on our report, the reaction we
generally got was, that is not going to solve the problem, or
in one case, I believe it was the Department of Justice and
later you will hear from someone from that agency if I have
gotten it wrong, but I believe it was the Department of Justice
that thought it was a good idea. They would participate in such
an endeavor--in fact they all agree they would participate in
such an endeavor, but the Department of Justice thought HHS
should take the lead. And Education and I believe HHS had the
idea or thought that there are surely are problems here but
there are more fundamental problems than disseminating
information, and we are already doing that, and they believe
the recommendation does not get at some of the other problems.
We will agree that there is a multitude of issues here and
that is why we had four different recommendations, to try to
get at it from various aspects.
Chairman Collins. I think in some ways that that response
typifies the problem that we are seeing. There is no one agency
that is accountable and responsible for these children. As a
consequence, each agency says someone else ought to be the
lead, or someone else ought to take care of that. The result is
that the children are falling through the gaps, and the parents
do not know where to turn.
I noticed that one of your comments was the need for
consolidating services. Based on the work GAO did, do you think
it would be helpful if there were a single source for
assistance that parents could turn to?
Ms. Ashby. That definitely would be helpful. It would not
solve the cost issues, but it certainly would help provide
information to parents. It would be more convenient, having to
go to one location, one location in the community, perhaps a
school or a community center, to get the information. And then
make informed choices about what course of action to take.
Chairman Collins. I know for a fact that families living in
rural communities have a particularly difficult time getting
help for their children. There are obviously fewer government
doors to knock on in rural America, but there is also a real
shortage of qualified mental health providers to give the kinds
of services that these severely ill children need.
Did you visit or talk with program officials serving rural
areas or remote locations? If so, can you give us an idea of
the kinds of barriers that families living in rural America
face? Is there a shortage of providers that exacerbates the
problem of delivery of services?
Ms. Ashby. We did visit rural areas and, yes, you are
absolutely correct there is a shortage of providers. In some
communities there are no providers at all. There are providers,
in some cases, that do not have the full range of knowledge and
resources that would take care of the problems of a particular
child. In some cases, a parent, a family would have to go long
distances or a child would have to be placed in another
community because of lack of services, which does not
facilitate any kind of re-establishment of connections and
relationships within the family that could be part of the cure,
as well as transitioning the child back into his or her home.
So, yes, you are absolutely right, the problem is perhaps
exacerbated in rural areas just because of the remote locations
and distances involved.
Chairman Collins. I was struck by the testimony of the
mother from Arkansas who appeared before us on Tuesday who
talked about her little boy being placed in a residential home
for treatment that was far away from where the family lived, so
the estrangement and the ability of these parents to be
involved in the decisions involving his care was really
diminished. That seems to me to argue for our trying to figure
out a way to develop better community- and home-based programs.
All of the mothers who testified before us wanted so much
for their children to be home with them, but they did not have
the support and the services that could bring that about. It
was just so tragic to hear that. That is a problem that you
seem to have identified as well.
Ms. Ashby. Absolutely. I was not here on Tuesday for that
hearing but I did have staff here and they told me about some
of the testimonies. This problem is devastating to families. It
influences, in some cases, parents' ability to work, their
ability to take care of other children in the home. Anything
that can provide services that is more convenient and can allow
the parents perhaps to visit the children or the children to
perhaps visit their home on weekends or at some point as part
of their program certainly would help the situation.
Chairman Collins. We heard over and over again of the
devastating effect on the entire family. In one case, the ill
child assaulted one of the step-sisters. In another case, the
strain on the marriage was just terrible. These problems do
affect the entire family.
One problem that we also heard is when custody
relinquishment occurs, then the parent is cut out of any say in
what happens to the child or treatment decisions. In the
programs you reviewed during your field work, how important did
program officials say it was to provide services that supported
families and encouraged parental involvement or the opposite of
custody relinquishment? Does that make a difference as far as
the treatment of the child with the illness?
Ms. Ashby. It does, and one of the things we did was look
for promising practices in States and localities, things that
they were doing that seemed to be helping to resolve the
problem and reduce the need for these voluntary placements. And
we did find one group of activities or group of programs that
seemed to be working, although, as I have said, there have been
no formal evaluations of these programs, and all of them are
very limited. They are either operating in one State or a few
counties in a State, so more needs to be done there. And one of
our recommendations is that the Federal agencies try to
encourage evaluation and disseminate information about the
results.
But one group of programs definitely tries to help the
family, and this is done in various ways. One thing that has
occurred is that in some localities, funds from various
programs have been combined to provide the total continuum of
services that a family needs. And a family might need various
things; perhaps economic support, if a parent cannot work or is
reduced in the number of hours he or she can work, tutoring for
the child, mentoring, perhaps some type of parent support group
just because of the situation that the family is in, certainly
mental health services, all kinds of things and things that
various Federal agencies alone cannot take care of by
themselves.
And in some cases even private nonprofit organizations have
been brought into the mix and have, together, provided funding
that has helped support families.
Chairman Collins. Senator Pryor and I were talking last
night about the legislation that we want to introduce to help
in this area. In addition, it seems to me we need to move on
mental health parity for insurance coverage and also on the
Family Opportunity Act, which would be very helpful to a lot of
these families, but there are still other gaps.
My final question to you. Do you have any other
recommendations for us on what you think would really make a
difference in providing better coordination of care or any
other recommendations as well?
Ms. Ashby. Well, I guess I'll just reiterate what we have
in our statement and what I said earlier in my summary of that
statement. There are various things that need to be done. Money
is an issue. Mental health services are very costly, even for
middle class families, and there are very few families that can
really afford the mental health services needed for a severely
mentally ill child, even with private insurance in the current
state of affairs because there are gaps, there are limitations
on the extent of services, the length of time that the child
can receive the services and so forth.
And, in fact, we found that in some cases Medicaid for the
lower-income families provides better coverage for mental
health than some private employer-provided plans. So money is
an issue. So ways of providing the services either at less cost
or subsidizing the parents, and families, and paying the costs.
Lack of information we have talked about extensively.
Parents need to know the various options available to them. The
children need to be screened properly, and that is another area
we have not really talked about this morning, but there are
instances where families, if they knew, could have available to
them screening and diagnostic programs that could help them
understand the nature of the mental illness and what type of
treatment would be necessary.
And then the parent, knowing that, in combination with
knowing what is available in the neighborhood or the community,
could make informed, intelligent decisions about what to do,
and that is lacking in a lot of neighborhoods. And part of that
of course is to train the local caseworkers and providers in
terms of what is available so that they will know not only what
their agency can provide, but what other agencies can provide,
and then just cooperation among the agencies to share in the
cost, perhaps, for a particular family or a particular child
because no one agency can necessarily provide all of what is
needed.
Chairman Collins. I want to thank you very much for your
testimony and for your hard work on this issue. Your testimony
and the GAO report have been extremely helpful to the
Committee.
We want to work closely with GAO, perhaps doing some
follow-up work in this area, but also to get your input as we
draft the legislation.
Ms. Ashby. All right.
Chairman Collins. So we look forward to working with you,
and thank you so much for being here today.
Ms. Ashby. Thank you.
Chairman Collins. We are now going to call the next panel.
We will hear from the officials testifying on behalf of
agencies that have responsibilities for children with mental
health needs.
I would like to welcome Charles Curie, the Administrator of
the Substance Abuse and Mental Health Services Administration
at the Department of Health and Human Services. Mr. Curie has
more than 20 years of professional experience in the mental
health arena, including service as the deputy secretary for
Mental Health and Substance Abuse Services for the Commonwealth
of Pennsylvania.
The Committee would also like to welcome Dr. Susan Orr,
Commissioner of the Children's Bureau in the Administration on
Children Youth and Families at HHS, who is accompanying Mr.
Curie today. Dr. Orr, it is my understanding that you are not
going to be presenting formal testimony, but you will be
available to answer questions.
Next, I would like to introduce Mr. J. Robert Flores, the
Administrator of the Office of Juvenile Justice Delinquency
Programs at the Department of Justice. Prior to his
appointment, Mr. Flores served as the vice president for the
National Law Center for Children and Families.
I look forward to hearing your testimony today, and, Mr
Curie, we would like to begin with you.
TESTIMONY OF CHARLES G. CURIE,\1\ ADMINISTRATOR, SUBSTANCE
ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION, U.S.
DEPARTMENT OF HEALTH AND HUMAN SERVICES, ACCOMPANIED BY SUSAN
ORR, PH.D., ASSOCIATE COMMISSIONER, CHILDREN'S BUREAU IN THE
ADMINISTRATION ON CHILDREN, YOUTH AND FAMILIES, ADMINISTRATION
FOR CHILDREN AND FAMILIES, U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Mr. Curie. Thank you, Madam Chairman, and good morning. I
am Charles Curie, the Administrator of the Substance Abuse and
Mental Health Services Administration at the U.S. Department of
Health and Human Services. I ask that my written statement be
entered into the record as well.
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\1\ The prepared statement of Mr. Curie appears in the Appendix on
page 170.
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Chairman Collins. Without objection.
Mr. Curie. Thank you.
I offer the apologies of the deputy secretary, whom you
actually invited. His schedule did not permit him to testify
this morning, but, again, we are pleased to be here, and I want
to thank you, Senator, for your leadership on this critical
issue, which those of us in the field have seen emerge over
time and know absolutely has to be addressed.
I am here on behalf of the Department to discuss the plight
of millions of families struggling to meet the needs of their
children who have serious emotional disturbances. In
particular, I am speaking about the parents of all
socioeconomic backgrounds who relinquish custody of their
children to State welfare or juvenile justice systems solely to
enable those children to get the mental health care they need.
The Department knows the situation is a significant and
unacceptable one. We know this because we have been grappling
with the larger constellation of issues that can lead parents
to this difficult decision, issues such as gaps in health care
coverage, inadequate coordination of community-based services
and stress that can arise with a serious chronic family
illness.
We know the significant scope and range of the problem,
since as many as 5 to 9 percent of children and youth in
America experience serious emotional disturbances, illness of a
magnitude that can compromise their ability to learn, to work,
to engage in family life and the life of their community. These
are the very kinds of illnesses that can, and do, lead to
placements in the child welfare or juvenile justice system.
Frankly, it does not matter whether the tragedy of patently
relinquishment affects millions of families or one family
alone. Even one is significant and an unacceptable situation
for the family, the community and for this Nation.
Consistent with the President's New Freedom Initiative,
promoting lives in the community and the Supreme Court's
Olmstead decision, the Department of Health and Human Services
has been working to seek solutions. Testimony that you have
heard on Tuesday described how just a few of those programs are
making a difference in different parts of this Nation.
The General Accounting Office report that you requested is
very important, but it tells only part of the story. While
useful to know where the problems are, as the GAO study and
report details, it is even more useful to build a
collaborative, integrated system, beginning at the community,
with leadership at the State and Federal levels with the
capacity to meet the needs of children with serious emotional
disturbances and their families.
As requested, let me describe a few of the Department's
activities and how we are coordinating them. In many cases,
these are not simply promising practices that need evaluation.
Rather, they are practices and programs with robust and still-
growing evidence of success that can be modeled and adapted in
States and communities across the country. The question is how
we bring those practices to scale so that they make a
difference nationally.
Let me begin with the Administration for Children and
Families (ACF). The Federal Foster Care Maintenance Payments
Program, which is title IV-E, provides upward of $5 billion
annually to States to assist with foster care maintenance for
eligible children, thereby promoting State provision of proper
care for children who need placement outside their homes, in a
foster family home or institution.
First, in 1982, and again just last month, ACF has been
clear with States that Federal law does not require that a
family give up custody of their child to secure Federal funds
for that child's placement in foster care. Yet some States
continue to limit voluntary placements into foster care to
situations in which a parent specifically relinquishes custody.
Even when a child is in foster care, however, there is no
guarantee that his or her mental health needs will be met.
State child welfare agencies often face the same challenges
obtaining services that lead parents to place their children in
foster care in the first place.
Children and families involved in child welfare face long
waiting lists for mental health services. Distance to service
providers also poses another difficulty. ACF is working to
solve that problem and is engaging in other program efforts as
well. A new ACF funding announcement is building on the
experience of SAMHSA's Children Program to encourage the
creation of community-based systems of care for children with
serious emotional disturbances.
Promoting Safe and Stable Families Program funds can be
used for mental health and other supportive services for
children with serious emotional disturbances so foster care
does not need to be an option for families in the first place.
Other innovative welfare-related changes are proposed in the
President's Fiscal Year 2004 budget, such as enabling States to
use ACF funds in new ways that lets them help provide mental
health services to families earlier, without ever removing
children from the family or the community.
Let me turn now to SAMSHA, the Substance Abuse and Mental
Health Services Administration.
Some of the strongest programs that SAMSHA administers
promotes stable families, improve outcomes for children with
serious emotional disturbances and reduce placements of
children outside their homes and communities. Consistent with
the President's New Freedom Initiative, the programs emphasize
community-based systems of care over institutional care or
other forms of child outplacement.
SAMSHA's comprehensive Community Mental Health Services
Program for children and their families helps reduce the need
for parents to reduce custody of their children in order to
receive mental health services. Under the program, communities
develop systems of care that are child-centered, family
focused, community based and culturally competent. Perhaps as
important, services are coordinated among the major child-
serving systems, including child welfare, juvenile justice and
education.
The goal is to create a positive, integrated and seamless
experience in service delivery for the child and the family.
The value of systems of care cannot be overstated. Evaluations
of our program indicate that families feel supported by the
services, and critically that children improve their
functioning at home, in school, and in the community. The
program has now served over 60,000 children in 46 States, 10
American Indian and Alaskan Native Tribes, the District of
Columbia, and the territories of Guam and Puerto Rico.
Moreover, with an increasing State match over the tenure of
each grant, virtually all of the graduated grant programs have
remained in operation beyond their Federal funding lives.
SAMSHA has also provided grants in almost every State and
the District of Columbia to statewide family network
organizations. These organizations enable families of children
with serious emotional disturbance the participate in the
development of policies that result in effective services of
children with serious emotional disturbance.
Families in these networks also support each other so
children can be cared for in their homes and not have to be
placed in more restrictive settings--like the Center for
Medicaid and Medicare Services (CMS).
While services are available through many pathways for
Medicaid-eligible children with serious emotional disturbances,
I want to focus, in particular, on how children with serious
emotional disturbances, whose family incomes or assets preclude
them from eligibility for Medicaid actually can get Medicaid
services.
States may use the TEFRA optional eligibility category to
provide Medicaid coverage to chronically disabled children,
including those with serious emotional disturbances who require
an institutional level of care. Under this option, parent
income and assets are not taken into account when determining
eligibility. The option enables States to cover children who
could be served in the community. Unfortunately, fewer than 20
States, 19 exactly, use this particular option.
Further, many children with serious emotional disturbances
do not meet the criteria for an institutional level of care. So
that also contributes to that option not necessarily always
being operational.
Under this option, another option is the Home and
Community-Based waiver. Under this option, States also can
disregard income and resource rules enabling them to provide
Medicaid to children with serious emotional disturbances and
others who otherwise would be eligible only in an institutional
setting. Three States--Kansas, New York and Vermont--have
received HCBS waivers specifically for children with serious
emotional disturbances, who otherwise would be hospitalized.
Children and their families in these States can get
specific treatment and supportive services, and among them
include respite care, case management, crisis intervention and
family support services. These special waivers require States
to demonstrate that community-based care is no more expensive
than hospital care would be. The cost neutrality requirement
does make the waiver difficult to obtain because, traditionally
and currently, it refers to institutions such as hospitals,
nursing homes and ICFMR for those individuals with mental
retardation and developmental disabilities.
For that reason, President Bush included a demonstration
proposal in his FY 2004 budget to provide home and community-
based services for children currently residing in psychiatric
residential treatment facilities, including them in that
equation, along with the other three types of institutional
settings.
Finally, the early periodic screening, diagnostic and
treatment services is also available or EPSDT for Medicaid-
eligible children. Under it, a child with a serious emotional
disturbance may receive any and all necessary mental health
service and may be even determined to have a mental health
through EPSDT mandatory benefit within the Medicaid program.
We have learned one more thing, that it is critical, if we
are to end the need to make children wards of the State to get
mental health care, and it is the need for prevention and early
intervention. We must engage early. We know that prevention and
early intervention can save lives. We also know that it can
save dollars, families, jobs and education.
In conclusion, I have tried to focus these remarks on what
the Department is doing, and will continue to do, to help end
the need for parents to relinquish custody of their children to
State juvenile justice and child welfare systems in the hope of
getting treatment for their children's serious emotional
disturbances.
However, as in any public health effort, the Federal
Government cannot act alone. We must work with States to help
them organize themselves and respond in a similarly coordinated
fashion. Local communities, families, mental health
professionals, supportive services and other key groups are
part of the solution and I know are willing to work on this
issue.
Finally, parents of children with juvenile diabetes,
cerebral palsy, with cystic fibrosis or other long-term chronic
illnesses do not have to seek placement for their children in
State child welfare and juvenile justice programs to ensure
that their children get care and treatment. It is time to treat
mental illness with the same urgency as other illnesses.
Consistent with the President's New Freedom Initiative, it is
time to provide children and adolescents, with serious
emotional disturbances, the same dignity and the same
opportunity for lives lived as members of both their families
and their communities.
Thank you for the opportunity to address this critical and
important issue. I request that you make the full text of my
remarks part of the hearing record and would be pleased to
respond to any questions you may have.
Chairman Collins. Thank you very much, Mr. Curie. I wanted
to cheer at the end of your statement when you contrasted the
treatment for children with mental illness and treatment of
children with juvenile diabetes or other serious diseases, but
who are suffering from physical ailments. These families know
where to go to get help, and their parents certainly do not
have to give up custody for them to get help. So I appreciate
your making that very important point
Mr. Curie. Thank you.
Chairman Collins. Mr. Flores, I would like to call on you
next.
TESTIMONY OF J. ROBERT FLORES,\1\ ADMINISTRATOR, OFFICE OF
JUVENILE JUSTICE DELINQUENCY PROGRAMS, U.S. DEPARTMENT OF
JUSTICE
Mr. Flores. Good morning, Madam Chairman.
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\1\ The prepared statement of Mr. Flores appears in the Appendix on
page 178.
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Chairman Collins. Good morning.
Mr. Flores. I want to introduce myself. I am Bob Flores,
the Administrator for the Office of Juvenile Justice and
Delinquency Prevention, within the Justice Department's Office
of Justice Programs. And on behalf of the Department of
Justice, I am pleased to have the opportunity to testify here
this morning about a very important issue that faces,
unfortunately, too many parents; the voluntary custody
relinquishment of their children in order for them to get
necessary mental health services.
I would ask that my written statement be included entirely
in the record.
Chairman Collins. Without objection.
Mr. Flores. Thank you. Let me begin by emphasizing that it
is our sincere belief that no child should have to enter the
juvenile justice system in order to obtain mental health
services. That just simply should not happen. And no parent
should be confronted with the agonizing choice between
relinquishing custody or allowing their child to suffer as that
child's condition deteriorates for lack of mental health
treatment.
Certainly, no one can hear or read the testimony of the
parents who appeared before this Committee on Tuesday without
being moved by their stories. And being even more convinced
that we need to move quickly to help other parents who find
themselves in similar heartbreaking circumstances.
Now, that this Committee and the GAO have outlined the
problem and brought it to the forefront, these parents have
every right to ask what the Federal Government can, and will
do, to help them.
The Department of Justice solidly supports the overall goal
of reducing and eliminating the inappropriate placement of
children not only into the juvenile justice system, but into
the child welfare system as well in order to obtain mental
health services. We believe that improving the effectiveness,
availability, and affordability of mental health services for
at-risk youth as well and those already involved in the
juvenile justice system will automatically reduce the need for
parents to relinquish custody of children with serious
emotional and behavioral disturbances.
My office, the Office of Juvenile Justice and Delinquency
Prevention, has funded and will continue to fund a number of
mental health initiatives. We are seeking to broaden our
understanding of the mental health needs of at-risk youth and
juvenile offenders so that we can both improve the quality of
the services they receive and prevent these young people from
any future involvement in the juvenile justice system.
An example is the Safe Start Program, which seeks to reduce
the impact of family and community violence on children from
birth to age six. Another project, the Mental Health and
Juvenile Justice Initiative, is designed to develop a model for
delivering a broad array of mental health services to youth
within the juvenile justice system.
In its recent report, ``Child Welfare and Juvenile
Justice,'' the GAO stated the problem very clearly. GAO also
went beyond a simple identification of the problem and provided
a useful description of practices that may help to reduce the
incidence of inappropriate child welfare and juvenile justice
placements.
I am pleased to note that OJJDP already supports a number
of programs that exemplify such practices. We concur with the
recommendations in the recent GAO report and agree that this
issue is a serious problem that needs to be addressed. We see
the report as a useful starting point for resolving not only
the issue of child custody relinquishment, but broader issue of
making juvenile mental health services more accessible and
affordable.
The GAO made four recommendations that apply specifically
to the responsibilities that the Attorney General would share
with the Secretaries of Health and Human Services and
Education. I would like to address each of these
recommendations in turn.
First, GAO recommends that the Secretary of HHS and the
Attorney General investigate the feasibility of tracking
children placed inappropriately in the child welfare and
juvenile justice systems to identify the extent and outcomes of
these placements. As I stated at the outset, the critical goal
for our agency is to eliminate any need for parents to place
their children into juvenile justice or child welfare systems
to obtain those needed mental health services. It is not clear,
however, how tracking the long-term placement outcomes would
contribute to the goal of eliminating such placements entirely.
In addition, it seems premature to institute a long-term
tracking program in the absence of even barely minimal reliable
data regarding the true scope of the problem. As the GAO noted,
after conducting site visits and surveys in numerous States, no
agency tracks these children or maintains data on their
characteristics.
We do agree that it is vital to collect data to determine
the scope of the problem, and we believe that the Department of
Justice has an important role to play in this effort. It is
part of our responsibility. We see a particular need for the
Department of Justice to support HHS as the likely lead agency
in this type of inquiry by helping HHS understand the
complexities of data collection within the juvenile justice
setting, providing contact information for relevant juvenile
justice facilities and engaging in other activities supportive
of that inquiry.
Second, GAO recommends that the Secretaries of HHS and
Education and the Attorney General develop an interagency
working group to identify the causes of misunderstandings at
the State and local level and create an action plan to address
those causes. We concur with the need for an interagency effort
to both clarify the causes of the problem and to identify
policy and programmatic changes that would address those
causes.
We are willing to participate in an existing interagency
forum, and we offer the Coordinating Council on Juvenile
Justice and Delinquency Prevention as a means to immediately
implement that recommendation. The Coordinating Council, which
is meeting this afternoon and tomorrow, includes the Department
of Health and Human Services, the Department of Education, and
five other Federal agencies, Cabinet-level departments, along
with other agencies, as partners with us in coordinating
Federal programs on delinquency prevention.
As the Council's Vice Chair, I have placed the issue of
voluntary custody relinquishment by parents seeking mental
health services on today's and tomorrow's agenda. I plan to
recommend to the Council that we explore how the agencies
represented on the Council can work together to ensure that
parents are no longer forced to choose between giving up their
children or obtaining needed services for them.
As an interagency body, the Council is well positioned to
examine the multiple factors contributing to this tragic
situation and to work towards developing strategies at the
Federal level to address the needs of these children and
families.
It was also made clear at Tuesday's hearing that there is a
great need for State and local officials to receive clear
direction regarding Federal regulations and requirements. It is
important to clear up the widespread misconception that Federal
rules require parents to relinquish custody in order for their
children to receive services under Medicaid.
Although DOJ has no direct role in Medicaid administration,
we intend to work with HHS to ensure that juvenile justice
agencies and professionals understand that issue because the
Medicaid office may be one of the places parents turn first for
information.
In summary, we accept the recommendation for an interagency
working group to address the issue of inappropriate placement
of mentally ill youth and propose to use an existing
interagency forum for that purpose. This will allow us to
rapidly move forward without having to build from scratch. As
we do that, we would emphasize the need to address the more
urgent problems of these young people which are again related
to a lack of affordable mental health services.
Third, GAO recommends that these agencies continue to
encourage States to evaluate the child mental health programs
that they do fund or initiate. OJJDP and other Federal agencies
already support numerous evaluation efforts involving State and
mental health programs, and these efforts will no doubt
continue for the foreseeable future.
However, a general evaluation alone does not appear to
address the specific issues raised by the GAO report or address
the acute situations described by some of the parents at
Tuesday's hearing. The urgent problems described in Tuesday's
testimony appear to result, at least in part, from a lack of
appropriate mental health services at State and local levels,
as well as from the unavailability or inadequacy of mental
health insurance coverage.
Therefore, we recommend that States evaluate their entire
systems of care for children in order to determine the
following information. How many children with serious mental
illness are in need of care but unable to obtain it? How do
State and local child-serving agencies, such as Education,
Child Welfare, Mental Health and Juvenile Justice, address the
needs of these children and how effective are these systemic
efforts in actually meeting the mental health needs of these
youth and their families.
We also need to set some priorities in evaluating programs
for children within the juvenile justice system who have severe
and chronic mental illness, as these are the youth whose
families may be very likely to be forced into giving up legal
custody.
Further, from both a public safety and a mental health
standpoint, any effort at systemic improvement requires us to
address the problems related to teenagers who, as a result of
their severe mental illness, endanger their families, their
peers or themselves.
As reported in Tuesday's testimony, many of these youths
are involved in setting fires, threatening or assaulting their
siblings, harming family pets, engaging in self-mutilation, and
threatening suicide. Law enforcement may, in fact, properly
need to intervene in these cases to protect family members or
peers.
This population, described in the Portland Press Herald as
having one foot in the juvenile justice system and one foot in
the mental health system, requires special services that will
allow us to maintain public safety, while rehabilitating these
youth and preparing their families so they can return home to
lead safe, happy and productive lives. We must make this group
of youth a priority for accessible, affordable, and effective
intervention.
Finally, the GAO recommends that the Secretaries of Health
and Human Services and Education and the Attorney General
determine the most effective means of disseminating the results
of these and other available studies to State and local
authorities. We agree that effective information dissemination
is critical, and we will explore how to improve our existing
methods of outreach, both within OJJDP and in concert with
other Federal agencies.
Federal agencies already possess many effective avenues for
disseminating the results of their work, but we could clearly
do more. While it is important to reach State and local
policymakers and officials, I believe it is even more vital
that we reach parents who are searching, at times desperately,
for the means to help their children.
We will explore how best to reach these parents and assist
them in navigating the mental health, juvenile justice systems
and child welfare systems in their States. In addition, we will
look for better ways to help parents become effective advocates
for their troubled children. As I said, we have heard directly
from parents about barriers they face in trying to help their
children with mental illness. It is now up to us to find ways
to overcome those barriers.
This concludes my statement. I welcome the opportunity to
answer any questions that you may have.
Chairman Collins. Thank you very much for your testimony. I
have been trying to figure out why so many State officials,
child welfare workers and families are under the mistaken
impression that they have to relinquish custody in order to
qualify for their children to receive an out-of-home placement
in a residential setting. So I decided to look at the guidance
that the Department of Health and Human Services has given on
this issue. And, Dr. Orr, I am going to ask you to respond to
this.
And I have to tell you that I understand why they are
confused. It is not unambiguous. There is nothing that says
that a parent can retain custody. I looked at the 1982 guidance
that not only says nothing to suggest that a parent can retain
custody and still qualify for Title IV-E dollars, but indeed
the 1982 guidance, which I have right here from the website
from the Administration for Children and Families says, and I
quote, ``Custody may be retained by the court or given to a
private nonprofit agency.'' It says nothing at all about
custody being retained by parents.
Now, just within the last week or so--I think it was on
July 11th--the Department put out some new guidance on this,
and there is a question in the manual that says, ``Does
responsibility for placement and care of the child, as used in
Section 472(a)(2) of Title IV-E of the Social Security Act
equate with custody?'' And the answer says, ``Not
necessarily.'' That is not exactly crystal clear on this point.
I would also note that the new guidance is difficult to
locate and is not included in your on-line policy manual. It is
slightly less ambiguous than the 1982 guidance, but it still
does not state unequivocally, clearly, that parents need not
relinquish custody of their children to receive the needed
assistance. What is the problem here? Why cannot HHS clearly
say, in the on-line policy manual and in all other guidance
given to the States, that parents need not relinquish custody?
I mean, why not say that clearly, Dr. Orr?
Ms. Orr. The guidance that you are looking at is in
response to not simply questions of mental health. I grant that
I am sure that we could be more clear in the future, and we
will look to making it more clear, but that voluntary
relinquishment is the question, and we have to define what
placement and care responsibility requirements are. There are
many paths for voluntary relinquishment. Some parents actually
come to the Agency because they do not feel like they are
adequate parents and ask for a voluntary placement. Others come
for the reason that we are here today. The guidance is intended
to address all kinds of scenarios.
Chairman Collins. But why not issue clear guidance on this
point? If there is such widespread misunderstanding, which we
know there is. You have all testified that there is, we heard
testimony on Tuesday that there is, and the GAO found that
there is. We clearly have a profound misunderstanding in this
area that is affecting the lives of families struggling with
mental illness.
Mr. Curie, would you like to----
Mr. Curie. Yes. Again, I think the point we are at
currently, and we have had discussions around what type of
clear, not only in terms of making sure the language is clear,
but what type of technical assistance can we provide in a more
formalized, systemic way to State child welfare agencies, to
juvenile justice authorities, translating that down to the
county level.
And part of our process in addressing this will be bringing
clarity and going beyond just the language, but also looking at
ways we can provide active technical assistance. And my
colleague, Mr. Flores also addressed the issue of technical
assistance, and for it to be effective, it will have to be an
interagency, not only within HHS, but also across the
Departments of Justice and Education as well.
I think part of the solution and part of the way of
addressing this at this stage is to have a systemic technical
assistance approach bringing this issue to light.
Also, there are going to be a variety of forums where we
are going to be able to address this issue. The timing of these
hearings and the GAO study, along with the President's New
Freedom Commission on Mental Health, which will be delivered to
the White House, anticipated now before the end of this month,
this issue is specifically addressed in the findings of the
Mental Health Commission. And with an action plan that we
anticipate being developed from the informed opinions of that
commission, this will define the priority area in terms of
streamlining and defining a clear children's mental health
system.
I think one thing we are in agreement on right now, is that
we cannot necessarily say we have a children's mental health
system.
Chairman Collins. I was going to say ``system'' is a
misnomer.
Mr. Curie. So that is why we need to look at transforming
what we do. Many of those efforts, when it comes to a cross-
agency mental health agenda, have been underway this past year.
Along with the council Mr. Flores mentioned, which we will be
participating in actively, through SAMHSA as the lead agency
within HHS on mental health services delivery, we brought
aboard this past year an individual, Dr. Sybil Goldman. I refer
to her as our children's czar.
Her major point, and what she is doing, is assuring that we
have across agencies a children's mental health and substance
treatment agenda. And ACF has been working very closely with
Dr. Goldman, as well as CMS, within HHS. And we are also
working with the Departments of Education and Justice, she is
engaging them for the first time and as part of the action plan
we are looking to define a Federal children's mental health
agenda.
I think this is a symptom that we are dealing with, a
tragic symptom, that we are dealing with because of that lack
of a system. A part of the plan will be engaging States and
looking for States to develop a comprehensive mental health
plan across agencies. And, if we only collaborate at the
Federal level about translating that, how that will happen at
the State level, giving technical assistance and support, we
are not going to see it translated at the community level.
Chairman Collins. I agree with your comments, and we do
need to have an integrated system of care. The President's
initiative is a terrific one that I think is going to make a
real difference, but on a practical level, I have to ask all
three of you to work together to come up with clear guidance to
the States so that this misunderstanding will no longer exist.
What is out there now is not clear guidance. It really is not.
And, Dr. Orr, I understand that the current guidance deals
with a whole host of issues, but that does not preclude you
from issuing guidance on this issue, and I would ask that you
do that and provide the Committee with a copy.
Ms. Orr. We will make that commitment.
Chairman Collins. Thank you. I appreciate that.
Mr. Curie, you talked about two programs that are waivers
under the Medicare program that can be particularly helpful to
the States in this area, and one you refer to as the TEFRA
waiver. I think most of us call it the Katie Beckett waiver.
Mr. Curie. Right.
Chairman Collins. Is that the same thing, just for clarity?
Mr. Curie. It is the same thing, correct.
Chairman Collins. And the other is the home- and community-
based services waiver. And you have pointed out that only three
States--it is Kansas, Vermont and New York----
Mr. Curie. Correct.
Chairman Collins [continuing]. Have taken advantage of the
home- and community-based services waivers. We have heard very
promising results from Kansas in its use of this waiver, and I
know from a series that the Portland Press Herald did in my
State that Vermont is having a lot of success with this waiver
as well.
Why are more States not availing themselves of this waiver?
You brought up the cost neutrality issue, but Kansas has found
that it is actually saving money to develop community and home-
based systems that are an alternative to institutional care or
residential care.
Mr. Curie. I think, up until now, with only three States
having taken advantage of that, other States are looking to the
track record established in those States to determine both
cost-effectiveness, and again we are receiving data on that,
and I think it is the dilemma and the challenge many States
face around their Medicaid programs.
For example, there is an offset that you assume many times
when you begin to move any waiver ahead; that you are going to
do things differently, in a better way, to assure that the
appropriate services are accessed, and if you had accessed the
appropriate services in the first place, you do not spend money
in a needless way, and also people are served better. Though,
historically, if you take a look at many of those options that
States have pursued, and I am not talking specifically about
this one, but in general, many times the offset has not
occurred, and States end up spending money the old way and a
new way. And with the State budget crunches States are facing
right now, I think they have wanted to move from a cost
perspective in a conservative fashion.
And as what I mentioned earlier, they were only able to
gauge cost neutrality based upon nursing home, hospital and
ICFMR placement, and we have moved away, and this is somewhat
good news, we moved away from institutional care being a
mainstay to trying to develop community-based systems of care,
and psychiatric residential treatment facilities have never
been included in that equation.
So, in order to move it forward and put States in a
position to take advantage of that, we believe including that
institutional setting will give greater opportunities for
States to prove cost neutrality and be able to move forward.
In the FY 2004 budget, we have proposed demonstration
projects to be able to address that issue to inform the States.
And I think the timing of both that, along with recommendations
coming out of the commission, and of course the GAO study and
this issue now being on the front burner, we will be in a
position, as we never have been before, to be able to craft
technical assistance and help States understand how they can
move ahead with those waivers.
I think we have a responsibility to help States find the
offsets that can occur. Because when you think about it, we are
spending money on treatment for these children anyway.
Chairman Collins. Exactly.
Mr. Curie. So we should be able to find the offset, and I
think States need to have the confidence, if they are moving in
this direction, that they will realize the offsets because many
times when they have moved in certain directions, the offsets
have not been realized. So the demonstration projects will also
help us realize that.
Chairman Collins. I want to follow up on that point. I am
delighted that the administration has proposed the
demonstration project because it is my understanding that the
current law requires that the current level of care the child
must meet to be served by the waiver does include, as you say,
hospital, ICFMR or a nursing home. And that obviously is not
the norm nowadays.
Mr. Curie. Correct. Absolutely.
Chairman Collins. It is psychiatric residential treatment
center that is more the norm. Now, does CMS or does the
Department believe that we need to change the law in that
regard? I know you have done a demonstration project, but would
it be helpful to have the law changed? I know there is a
provision in the Family Opportunity Act, which I have
cosponsored, which would expand the statute to include
residential treatment centers. Do you think that statutory fix
is needed?
Mr. Curie. Yes. At this point, the Department has not
reached the conclusion that a statutory fix is needed, and that
is why they are looking at administrative remedies at this
point. But we are committed to having ongoing dialogue with you
in the process of legislation you are considering to determine
if a legal or legislative remedy is necessary. But at this
point, we have not taken a position that that is necessary.
Chairman Collins. So you may have the authority, and you
obviously believe you have the authority to do the
demonstration project.
Mr. Curie. Yes.
Chairman Collins. I think it would be helpful to clarify
the law, and that way it removes the doubt in the minds of the
States, and it might lead to greater use of it. It seems to me,
even if you may be able to do it administratively, why not
clarify the law?
Mr. Curie. And, conceptually, with the law that you are
examining and considering at this point in time, I think it is
a matter of pragmatically what is needed, and we look forward
to the continued dialogue.
Chairman Collins. Another concern about the Katie Beckett
option is that, according to the Bazelon Center survey, in many
States that have elected the Katie Beckett option, children
with mental and emotional disorders have been excluded. The
States have focused on children with severe physical problems,
and I do not believe, at least based on our analysis, that the
rules for the Katie Beckett option exclude children with
serious emotional disturbances, thus I think we have got
another communication problem here about whether the materials
prepared for the States leave most parents of children with
emotional and mental disorders uninformed about their
eligibility for the program. Could you comment on that as well?
Mr. Curie. That is consistent with our knowledge as well,
in terms of States where they do have the TEFRA option,
children with serious emotional disturbances are not
necessarily recognized or realized in that process or
prioritized, and we do believe this must be part of, when we
talk about providing technical assistance and clarity, working
with those States that already have TEFRA to assure that we can
bring clarity to that situation.
I think this is, unfortunately, as we discussed earlier,
not uncommon; that when there are many options adopted to
address the health needs of children, many times mental health
or serious emotional disturbance is not necessarily given the
clarity that the physical disorders or disabilities may have.
So it is an issue we need to address, and that is
consistent with our findings as well.
Chairman Collins. Mr. Flores, what kind of assessments are
typically made of children entering the juvenile justice system
to determine whether or not they have a mental disorder? The
reason I ask this question is I have seen several reports that
suggest that a large number of people who are incarcerated are
suffering from mental illnesses, which is obviously very
disturbing, in terms of whether or not they are receiving the
treatment. But is there a screening when a child comes into the
juvenile justice system, generally?
Mr. Flores. I would like to be able to tell you that there
is such a thing as a typical screening tool or a typical
process that is engaged, but there simply is not. Situations
vary widely from State-to-State and facility-to-facility, and
things occur at different times in the system. One of the
things that the Office of Juvenile Justice and Delinquency
Prevention has been doing is really trying to work with key
stakeholders in this issue to do two things:
One is to explain to people that mental health is a
critical issue for us in the juvenile justice system because I
think some would like to think it is only an issue for the
mental health or the Health and Human Services system on the
State or Federal level. And so we have done a great deal in
working with some of our key stakeholders, such as the judges,
and corrections officers, and we have spent a considerable
amount of time, energy and resources, provided to us by
Congress to develop good assessment tools and research. In
fact, we now have a resource guide on assessment tools that is
in final draft form that we expect to release fairly shortly.
Another responsibility of our office is to work primarily
through the State juvenile justice coordinators, their
specialists, and through different professionals, as opposed to
directly providing services to individuals (although we do that
too). We do have some work that is going on now with a number
of Native American communities, through our Tribal Youth
Program. We are providing funds directly to the Tribes so that
they can initiate mental health programs in their communities.
But to go back to your question, there is no screening
system, and I think we are still a little bit away from that,
in terms of a true adoption of the understanding of how
critical it is to address mental health needs. For example, as
my colleague Charlie said, one of the keys here is the enormous
benefit to restoring these children because that is what we are
talking about.
For example, you take a girl who has been sexually abused
over a period of time and somehow, because of just God's grace,
she really is resilient, and she is able to go to school for a
couple of years and do well, but there is a lot of anger there,
and it does not get resolved, and so she is involved in a very
nasty assault.
It is critical for people to understand that for her to
work through that, and for us to have a child who once they
leave the facility, is in a position to succeed and not come
back into this facility, triggers all of those resource costs
that States now, because of the budget concerns, really want to
solve. For us to succeed there, to really restore that girl, we
have to have the ability to do an assessment that really
identifies that at an early point.
It does not have to wait either for when they are admitted
to the correctional institution or the detention facility. It
can be done when the case first goes to juvenile court. It can
be done as an early referral, as part of the police process, or
the arrest process.
So there are a number of opportunities which we are really
trying to push because we would like to push that back as far
as possible.
I would also like to say that one of the conversations we
are beginning to have with Health and Human Services is to talk
about the use of early intervention moments. Whether it is a
Head Start program, whether it is participation in Big
Brothers, Big Sisters, membership in a Boys and Girls Club, it
is an opportunity to really start to identify those children
who are at risk very early, work with their parents, get them
that information because we can not only save money, which is a
concern, but we can save lives because we make the investment
on the front end.
So we are very concerned that there is not widespread
unanimity about what makes a good assessment tool. We are
working very hard on this.
The other thing I want to give you as a point of
encouragement is that we have people outside of government; the
pediatricians are working hard to try to figure out what they
can use as a screening tool to identify at-risk issues, of
which mental health challenges are among the most significant
that we have and that we know about.
So we have done the research, we understand mental health
is key, and we are working very hard actually to really try to,
almost like missionaries, going out and really talking to the
different States and really getting them to see how they can
help themselves by doing a very good, strong assessment on the
front end with kids coming into the system. Because part of the
mission that Congress has given JJ is to make sure that we do
not have inappropriate placements, period, in the juvenile
justice system.
So one of the areas that we have a way for us to work with
States constructively is through the process of our Formula
Grant Program which we provide to States. And one of the things
that they have to succeed at is making sure that placements of
children are appropriate, and they are not appropriate if it is
a status offense, and it should not be appropriate if it is
simply an admission to try to get mental health. Because, as
Mr. Curie has said, there is no guarantee that once they get
into that system, it is going to happen lickety split.
The other part of it is that I also think that when it is
used to kind of cut to the front of the line, we really run a
danger of pitting one group of parents against another, and I
think that would be really destructive. So I think we have just
an opportunity here to take some major strides, but we are
looking very hard at the assessment issue, and it is fortunate
for us that we do have judges who are involved in these cases.
And one of the things that we will be doing--in fact, I am
heading to San Antonio this weekend to speak to the Board of
Directors of the National Council of Juvenile and Family Court
Judges, and to speak to one of their significant committees to
talk to them about a number of issues. I will put this before
them because I think that is one of the ways that we can
disseminate information to a decisionmaker in the system who
perhaps, if no one else points these things out, is in a
position not only to do so, but to make sure that it gets the
attention it deserves.
Chairman Collins. You mentioned in your testimony some of
the efforts that you have underway to coordinate funding and
programs with other agencies, and I think one was the Safe
Schools Healthy Students Initiative. Are there other
initiatives on which your agencies have joined forces or
combined funding streams to provide services? Because one of
the lessons that I have learned from these hearings is how
fragmented the system, well, there is not a system, but how
fragmented the programs are as far as working together.
Mr. Flores. The Office of Justice programs, of which we are
part, prior to my arrival, initiated a reentry project. I think
they did that also largely through the auspices of using the
Coordinating Council. And one of the great things about it is
that it brought together funding streams from the Labor
Department, from HHS, from Education, from HUD, as well as the
Justice Department funding to really try to build the capacity
in States to address the question of how do we get kids to,
when they leave the system, as well as adults--we happen to be
responsible for the juvenile aspect--how do we get them to
succeed when they come back out because we do not want them
constantly riding the juvenile justice train or the adult
train. It is destructive.
One of the opportunities there is for States to look at,
with that money, and each of them received somewhere in the
vicinity of around $2 million to build this capacity, and we
are working with them continually, providing technical
assistance and training to them, is to look at mental health as
a major issue. Because if the mental health needs are part of
what brought that child into the system, and they are not
addressed, then one should not ask for a different result if
the ingredients were the same to get that child back in that
system, whether or not their custody was relinquished by their
parent.
So, for us, the mental health issue again is extremely
important. So that is another example of where we have taken,
and I think the budget figure is well over $100 million of
joint funding to do this project, and I think every State in
the United States is currently participating in it.
Chairman Collins. That is good to hear because I do think,
as GAO found, that the more interagency coordination, the more
effective we will be in delivering these services.
Officials in the States and the GAO have said that
supporting families is extremely important and that involving
parents represented a change in philosophy for several of these
programs. Previously, I have been told, the focus has been on
providing services to the children, and the parents have not
necessarily been included in decisions about their child's
care.
Now, we are seeing a trend that I think is a promising one
where the focus is on providing services to parents to help
them keep their children in the home and to help them make an
informed decision about their child's care.
Could you comment on those developments from the juvenile
justice perspective?
Mr. Flores. I would love to. Thank you, Senator.
I think if you went out to develop the most expensive and
questionable system, in terms of providing mental health, it
would involve sending children into the juvenile justice system
to get it. The reason for that is, on top of whatever the costs
might be of the mental health services, you have now added the
cost of confinement to that. And if it is not necessary, then
we are, in essence, really minimizing the effectiveness of the
money that Congress does provide for us to deal with this
issue.
One of the challenges here and the opportunities here is
that as we look at involving parents, we need to think about
what the alternative would be, and that is that you take
perhaps the most critical player and put them on the sidelines.
This is if you took the star quarterback and said, ``We are
going to sit this one out, and we will just see what happens.
We will have the halfback throw the passes.''
In those cases where it is inappropriate to have the parent
continue because they are perhaps the abuser or there is some
other issue, where legitimately you do not want that parent, at
least at the present time being involved, you need to find out.
We need to find places where we can really engage the parents
because they are capable of providing things and benefits to
the system that we simply cannot pay for and cannot get any
other way.
Let me give you the best example I have is through our
Missing Children Program. We have a Missing Children Program
because of parents. Parents came forward many years ago and
said, ``We know more about stolen cars than we know about
missing children, and that cannot stand.''
And so we came up with a process. Now, our office puts out
not only materials by the foremost experts in law enforcement
and in technology and missing children, and child pornography,
and child exploitation, but we have materials that are put out
by parents for parents; how to deal with this, how to access,
how to advocate for their children.
We currently fund an advocacy organization which is made up
of advocacy organizations that are primarily the parents of
many of these children who have gone missing and who have not
yet been recovered.
So I think it is a very encouraging trend, and what we
would like to see at the Office of Juvenile Justice, as I
believe was mentioned, and I know that Health and Human
Services and the entire administration wants to see, is more
ways that we can build and strengthen families and make sure
that they are a prime player. Because, at the end of the day,
we want them to go home and we want them to succeed. And so we
have to make sure that if there is any way possible that we can
work with those families, work with those moms and dads, work
with those siblings.
I would add too that, as one of the parents I believe
testified, and certainly it was covered in the news coverage
that was done in your State, that special report about the
tragic incident of walking in on one of the kids threatening
the life of another one of the siblings. We cannot forget about
those siblings.
I mean, there is the parent, there is that particular child
who is troubled, but we also have to recognize the needs of the
other children in the family. It is not likely that those
children will ever see the juvenile justice system, with
respect to that particular case. I mean, we are going to treat
that young lady as a victim. We are not going to treat her, and
she is not going to go into a kind of juvenile justice setting,
but we cannot ignore the fact of what has happened--the trauma
that has taken place.
And so how that need is going to be met, and what needs
that child has, must be determined. If we are going to be
successful, we have to work, as most good prosecutor's offices
do, with victims' services. How do we provide for those other
people in the family unit or in the community who have been
impacted?
So I want to say that I think that there is a need to have
a number of voices. And I want to also let you know that with
respect to some of our programs, we are now making sure that
children who have mental health issues in their lives are
addressed and that parents are part of advisory boards or are
part of the consultative process that we are engaging in so
that we do not come out with a product or urge a best practice
that really does not have someone who has lived through this
providing information to us directly.
Chairman Collins. Mr. Curie, could you add to that also?
Mr. Curie. Sure. Before I do, I do want to clarify
something we discussed earlier for the record. That is, when it
comes to the specific HCBS demo program, and including
psychiatric residential facilities, and it is discussed in the
President's budget, it does need legislative authority. So we
will need to discuss that aspect with you.
Chairman Collins. Thank you for that clarification.
Mr. Curie. Absolutely, There are two things I would like to
discuss. One, we absolutely need to come up with ways to assure
that the parent is always included, and that the family is
always included. I mentioned in my testimony the systems of
care approach that we are funding at SAMHSA. This very much is
based on a principle, that there needs to be family and
parental involvement at every step of the way. I think as we
look at points of intervention being earlier, as much as
possible, we are able to realize that. I think the question is
what we have learned.
Right now we are funding systems of care at about $97
million on an annual basis. We are proposing in the FY 2004
budget to add an additional $10 million to that, because it has
been also assessed as effective by the PART review that OMB has
conducted as a way of assuring not only all entities that deal
with children are at the table or around an individualized
plan, but that parents very much are central to that process. I
think it is in collaboration with, whether we are talking the
child going into the juvenile justice system potentially,
trying to divert them, or the child welfare system, we clearly
have models that work.
The question you asked earlier too in terms of integration
of funding, I think the critical thing is clear, where does the
point of integration need to be clearest? That point of
integration needs to be most clear at the level of the
individual family. So they do not have to bend themselves to
deal with a system that has desperate funding streams and
different funding streams to navigate. There are models there,
and there have been models that have been demonstrated through
a variety of waivers through CMS. Some are managed care
oriented. Some are oriented toward consolidation and
integration of using, for example, the county, or using the
local level of government as a point of integration and that
the Federal agencies or the State agencies allow that
integration to take place. I think we need to examine those
models and how they are working and see again what we can bring
to scale.
Chairman Collins. Thank you. I have just one more question
that I want to ask each of you, and that is, the GAO report
that I commissioned along with the congressmen has now been out
for, I guess, 3 months. It came out in April. I would like you
to give me an update on where you stand on implementing the
recommendations GAO had for the interagency task force,
tracking, etc. Dr. Orr, I do not know whether you have any
comments on that or whether it should be Mr. Curie.
Ms. Orr. You asked how we track data, and the automated
foster care and adoption reporting system gives us some
information. We are currently in the process of updating that
system for the first time to see where we need to make
modifications where appropriate, and we will certainly look at
that.
We do know there was voluntary relinquishment. We just do
not know whether it was because of a mental health issue on the
part of the child or whether it was a voluntary relinquishment
for some other reason. We are looking at ways in which we can
improve our data collection efforts at this point. The public
comment period just closed so it will be forthcoming.
Chairman Collins. Mr. Curie.
Mr. Curie. Along with what ACF is looking at in terms of
their data tracking, and again it is a collaborative effort
within HHS to make sure elements are in there and determine how
best those elements can be addressed. Again with the notion of
the urgency of this issue, one thing we have been clearly
focused on is the data tracking, because I do not think any of
us in this room needs to be convinced it is a problem. I think
it is a problem of relatively large scope. I think we all agree
because of the GAO study and the response, the 12,000 to 13,000
figure is larger than that, that we need to be moving urgently.
When I mentioned earlier about setting a cross-systems
mental health agenda, this issue is going to be central to that
because I think it is a major symptom of the dysfunction of the
current delivery structures throughout the Nation. So there has
been an ongoing process in place.
We plan to continue to elevate this issue further as part
of an area around problem-solving in terms of how systems can
address this in such a way that once we achieve earlier
intervention, make sure that there is screening available at
the school system level, where children basically appear,
primary care, as Mr. Flores mentioned earlier, the strong
linkage of primary care to mental health because even though a
child may not go to a community mental health specialty
provider, which is rare, they are at least seen by a primary
care physician typically twice a year, even if it is for 15
minutes each visit, which tends to be the average, there are
ways of implementing an initial mental health type of
screening.
These other types of things we are looking to, again--I do
not want to use the word institutionalize, but institutionalize
in our way of doing business to assure that there is a seamless
children's mental health system that is transparent to the
parent, and also that there is a clear single point of entry
for a parent, or a pathway regardless of what door the parent
enters, primary care, juvenile justice, child welfare, school
system. That there are pathways that lead to the same
appropriate mental health assessment and treatment. If we
attain that, we are going to address this particular problem.
That is why we need to be looking at the overall systems
approach, and keep this on the front burner as an area of
concern.
What I do not want us to do is to develop just a special
long-term work group to look at only this problem. I think we
need to look at the greater children's mental health service
delivery system, with this problem one of the primary examples
for us as to why we need to move ahead.
Chairman Collins. Thank you. Mr. Flores.
Mr. Flores. Senator, I think that if you were to ask law
enforcement professionals, prosecutors, and judges generally
where this problem ranks in their view, many would be unaware
of it. So for us, our challenge is a little bit different than
those of our colleagues over at HHS because we need to bring
this to people's attention in perhaps a different way than has
been done before.
We are having those conversations already. As I testified
earlier, I have put the issue on the agenda for the
coordinating council, so it will be a matter of discussion and
then further work by the Subcommittee, I expect, on family
health.
We are going to talk with the judges and then--I did not
get a chance to develop it, but with respect to our State
advisory groups and the juvenile justice specialists, one of
the things that we have available that is administered by our
office are block grants and formula grants. Those monies can be
used to assist States to take a look at this problem and then
to address it.
We have been working for quite some time on mental health
issues in terms of assessment tools, in terms of its importance
to the system, and the fact that without addressing them we are
not going to see the kinds of progress and prevention that we
would like to see. So that conversation has already begun and
it has been going on for some time. But I am not sure that
really our colleagues out in the JJ community really have
focused on this as an issue. I think it is important for them
to be aware of that, so we are going to bring that to their
attention in a very clear way almost immediately.
But I would say I agree with Mr. Curie that one of the
things that we want to do is make sure that we fix some of the
underlying things that need to be addressed because I think one
of the challenges that I am going to find as soon as I start
talking to people is that they are going to ask me, how do you
define that? How do you define some of the issues that you are
talking about?
I will tell you, personally I was surprised as we started
to get into the truancy issue, which is important and sometimes
has a mental health causation--that is why children stop going
to school--that there is not even a national definition for
truancy. So that when I go and have conversations with people,
even at the Department of Education, while we have a general
understanding of what we want to say to each other and what we
are talking about, we also have to be very careful. So I am
looking forward to a very close collaboration with HHS and with
folks at Education.
I would also say, and I would encourage you to also think
about the other departments. For example, if we are going to
see the progress that we would like to see in communities, we
need to make sure that we do not leave the Department of
Agriculture out of this picture, because I know from my time as
a former prosecutor that if children are having major problems
with their blood sugar and it is going up and down because
their diet is absolutely terrible, regardless of the medication
that we give them it may not have the intended effect, it may
not do the kinds of things we want them to do and we may end up
with a situation where a child does engage in a crime as a
young adult, or as an adult engages in really horrific conduct,
and then we have got really a very difficult situation to
address.
So I think that there is room here at the table and
certainly it is, in some sense, a luxury we have with the
coordinating council because we have such a broad membership
that we will bring this to everyone's attention and the
question will be: What is your mental health program and how
are you going to contribute to the success of this, and how are
we going to help. Again, our partners, which I think really
will remain in the lead on this are at HHS. How are we going to
really make it possible for them to succeed in a way that will
be meaningful to the parents that came and who listened with
rapt attention, whether it was on the Internet or however they
get this testimony.
This speaks to me especially as a parent. I have three
children. I cannot imagine the pain that some of those parents
must feel. So I guess my response is that we are going to be
moving very quickly to make sure that at least on our side of
the table something is brought to the attention of people who
may not recognize it at this time as an issue.
Chairman Collins. Thank you for your response. Thank all of
you for your testimony today. This concludes the 2 days of
hearings on this issue. It has been heart-rending to hear the
agonizing decisions that too many parents who have children
with severe mental or emotional illnesses have had to make. My
hope is that we have not only put a spotlight on the problems
that these parents face, but that we have paved the way for
both administrative and legislative solutions. We really have
to tackle this issue. It just should not be happening that
children are not getting services unless their parents give up
custody of them.
I think, as we have all said, the custody relinquishment is
merely a symptom of a lack of a system to meet the needs of
these children. So it is a complex issue, but it is one that
demands all of our commitment and attention.
I am going to be working with several of my colleagues on
legislative reforms. We welcome and need your help and your
input. I look forward to receiving information on what you are
undertaking administratively through the task force, and
through clarifying the guidance and the President's commission.
Working together I think we can make a real difference for
these children and their families, and I know that is a goal
that we all embrace.
So I want to thank you very much for being here today, and
I want to thank the GAO for its excellent work. Most of all, I
want to thank the families who were willing to come forward and
talk about their personal struggles. It is very difficult, as
we all can appreciate, to have a child who is suffering from a
mental or behavioral or emotional disorder. But then for the
family to have to battle a system as well, or to have to
encounter obstacle after obstacle to get care for those
children is something that we just cannot allow to stand. The
families who were brave enough to come forward and tell their
personal tales really enriched these hearings and helped us
gain a better understanding. So I want to thank all who
participated.
I intend to introduce bipartisan legislation in September
to help facilitate the provision of care to these children and
assistance to families who truly have nowhere to turn.
The record of this hearing will be kept open for 15 days
for the submission of any additional materials. Again, my
thanks to our witnesses. This hearing is now adjourned. Thank
you.
[Whereupon, at 11:18 a.m., the Committee was adjourned.]
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