[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?

=======================================================================


                                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

                              ----------                              


                         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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Kennedy appears in the Appendix 
on page 75.
---------------------------------------------------------------------------
    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.]
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Stark appears in the Appendix on 
page 78.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Yonan appears in the Appendix on 
page 87.
---------------------------------------------------------------------------
    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\
---------------------------------------------------------------------------
    \1\ The prepared statement from NAMI--National Alliance for the 
Mentally Ill appears in the Appendix on page 214.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Cooper appears in the Appendix on 
page 90.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    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.]
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Curie appears in the Appendix on 
page 170.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Flores appears in the Appendix on 
page 178.
---------------------------------------------------------------------------
    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.]


                            A P P E N D I X

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