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88–933 PDF 2003

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

(

(II)

COMMITTEE ON GOVERNMENTAL AFFAIRS 

SUSAN M. COLLINS, Maine, Chairman 

TED STEVENS, Alaska 

GEORGE V. VOINOVICH, Ohio 

NORM COLEMAN, Minnesota 

ARLEN SPECTER, Pennsylvania 

ROBERT F. BENNETT, Utah 

PETER G. FITZGERALD, Illinois 

JOHN E. SUNUNU, New Hampshire 

RICHARD C. SHELBY, Alabama 

JOSEPH I. LIEBERMAN, Connecticut 

CARL LEVIN, Michigan 

DANIEL K. AKAKA, Hawaii 

RICHARD J. DURBIN, Illinois 

THOMAS R. CARPER, Deleware 

MARK DAYTON, Minnesota 

FRANK LAUTENBERG, New Jersey 

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 

(III)

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

Page

IV

Kennedy, Hon. Patrick J.—Continued

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

(1)

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 

2

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, 

3

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. 

4

1The prepared statement of Mr. Kennedy appears in the Appendix on page 75. 

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. 

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. 

5

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. 

6

1The prepared statement of Mr. Stark appears in the Appendix on page 78. 

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.] 

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. 

7

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 apVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00011 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
8

proach 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 wraparound 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 

9

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. 

10

1The prepared statement of Ms. Brown appears in the Appendix on page 81. 

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. 

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 

11

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 minVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00015 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
12

1The prepared statement of Ms. Yonan appears in the Appendix on page 87. 

utes, 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 

13

1The prepared statement from NAMI—National Alliance for the Mentally Ill appears in the 

Appendix on page 214. 

and dear to my heart, the struggle that my family has endured in 

attempting to access mental health services for my twin sons. 

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

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 

14

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 

15

1The prepared statement of Ms. Cooper appears in the Appendix on page 90. 

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. 

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. 

16

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 

17

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. 

18

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. 

19

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. 

20

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 

21

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? 

22

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 

23

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 

24

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. 

25

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. 

26

1The prepared statement of Ms. Osher appears in the Appendix on page 94. 

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. 

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? 

27

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 

28

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. 

29

1The prepared statement of Ms. Seltzer appears in the Appendix on page 100. 

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. 

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. 

30

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. 

31

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 servVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00035 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
32

1The prepared statement of Ms. Adams with attachments appears in the Appendix on page 

115. 

ices 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.] 

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 perVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00036 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
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sonal 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 inVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
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cludes, 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. 

35

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 nonwaiver 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? 

36

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. 

37

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 proVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
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gram 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 

39

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 

40

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 communitybased 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 

41

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.] 

(43)

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 

44

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 reVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00048 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
45

1The prepared statement of Ms. Ashby appears in the Appendix on page 136. 

port 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. 

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 mainVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00049 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
46

tains 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 expenVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00050 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
47

sive 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. 

48

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 

49

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 

50

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. 

51

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 situaVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00055 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
52

tion 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 lowerincome 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 followup work in this area, but also to get your input as we draft the 

legislation. 

Ms. ASHBY. All right. 

53

1The prepared statement of Mr. Curie appears in the Appendix on page 170. 

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. 

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 

54

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. 

55

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 welfarerelated 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. 

56

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 CommunityBased 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. 

57

1The prepared statement of Mr. Flores appears in the Appendix on page 178. 

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. 

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. 

58

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. 

59

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 

60

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 

61

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 manVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00065 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
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ual 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. 

63

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 communitybased 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 

64

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 statVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00068 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
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ute 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 

66

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 Stateto-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 

67

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 

68

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, 

69

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. 

70

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. 

71

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 

72

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 

73

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 behavVerDate 0ct 09 2002 09:50 Oct 29, 2003 Jkt 088993 PO 00000 Frm 00077 Fmt 6601 Sfmt 6601 C:\DOCS\88933.TXT SAFFAIRS PsN: PHOGAN
74

ioral or emotional disorder. But then for the family to have to battle a system as well, or to have to encounter obstacle after obstacle 

to get care for those children is something that we just cannot 

allow to stand. The families who were brave enough to come forward and tell their personal tales really enriched these hearings 

and helped us gain a better understanding. So I want to thank all 

who participated. 

I intend to introduce bipartisan legislation in September to help 

facilitate the provision of care to these children and assistance to 

families who truly have nowhere to turn. 

The record of this hearing will be kept open for 15 days for the 

submission of any additional materials. Again, my thanks to our 

witnesses. This hearing is now adjourned. Thank you. 

[Whereupon, at 11:18 a.m., the Committee was adjourned.] 

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