[House Hearing, 110 Congress]
[From the U.S. Government Printing Office]



 
                   PRESCRIPTION PSYCHOTROPIC DRUG USE


                     AMONG CHILDREN IN FOSTER CARE

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


                                HEARING

                               before the

                            SUBCOMMITTEE ON
                   INCOME SECURITY AND FAMILY SUPPORT

                                 of the

                      COMMITTEE ON WAYS AND MEANS
                     U.S. HOUSE OF REPRESENTATIVES

                       ONE HUNDRED TENTH CONGRESS

                             SECOND SESSION

                               __________

                              MAY 8, 2008

                               __________

                           Serial No. 110-83

                               __________

         Printed for the use of the Committee on Ways and Means




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                      COMMITTEE ON WAYS AND MEANS

                 CHARLES B. RANGEL, New York, Chairman

FORTNEY PETE STARK, California       JIM MCCRERY, Louisiana
SANDER M. LEVIN, Michigan            WALLY HERGER, California
JIM MCDERMOTT, Washington            DAVE CAMP, Michigan
JOHN LEWIS, Georgia                  JIM RAMSTAD, Minnesota
RICHARD E. NEAL, Massachusetts       SAM JOHNSON, Texas
MICHAEL R. MCNULTY, New York         PHIL ENGLISH, Pennsylvania
JOHN S. TANNER, Tennessee            JERRY WELLER, Illinois
XAVIER BECERRA, California           KENNY HULSHOF, Missouri
LLOYD DOGGETT, Texas                 RON LEWIS, Kentucky
EARL POMEROY, North Dakota           KEVIN BRADY, Texas
STEPHANIE TUBBS JONES, Ohio          THOMAS M. REYNOLDS, New York
MIKE THOMPSON, California            PAUL RYAN, Wisconsin
JOHN B. LARSON, Connecticut          ERIC CANTOR, Virginia
RAHM EMANUEL, Illinois               JOHN LINDER, Georgia
EARL BLUMENAUER, Oregon              DEVIN NUNES, California
RON KIND, Wisconsin                  PAT TIBERI, Ohio
BILL PASCRELL JR., New Jersey        JON PORTER, Nevada
SHELLEY BERKLEY, Nevada
JOSEPH CROWLEY, New York
CHRIS VAN HOLLEN, Maryland
KENDRICK MEEK, Florida
ALLYSON Y. SCHWARTZ, Pennsylvania
ARTUR DAVIS, Alabama

             Janice Mays, Chief Counsel and Staff Director

                  Brett Loper, Minority Staff Director

                                 ______

           SUBCOMMITTEE ON INCOME SECURITY AND FAMILY SUPPORT

                  JIM MCDERMOTT, Washington, Chairman

FORTNEY PETE STARK, California       JERRY WELLER, Illinois
ARTUR DAVIS, Alabama                 WALLY HERGER, California
JOHN LEWIS, Georgia                  DAVE CAMP, Michigan
MICHAEL R. MCNULTY, New York         JON PORTER, Nevada
SHELLEY BERKLEY, Nevada              PHIL ENGLISH, Pennsylvania
CHRIS VAN HOLLEN, Maryland
KENDRICK MEEK, Florida

Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public 
hearing records of the Committee on Ways and Means are also published 
in electronic form. The printed hearing record remains the official 
version. Because electronic submissions are used to prepare both 
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unintentional errors or omissions. Such occurrences are inherent in the 
current publication process and should diminish as the process is 
further refined.


                            C O N T E N T S

                               __________

                                                                   Page

Advisory of May 1, 2008, announcing the hearing..................     2

                               WITNESSES

Julie M. Zito, Ph.D., Professor of Pharmacy and Psychiatry, 
  Pharmaceutical Health Services Research, University of 
  Maryland, Baltimore............................................     6
Jeffery Thompson, M.D., Medical Director, Washington State 
  Department of Social and Health Services, Olympia, Washington..    14
Tricia Lea, Ph.D., Director of Medical and Behavioral Services, 
  Department of Children's Services, State of Tennessee, 
  Nashville, Tennessee...........................................    20
Misty Stenslie, Deputy Director, Foster Care Alumni of America...    27
Laurel K. Leslie, Developmental-Behavioral Pediatrician, Center 
  on Child and Family Outcomes, Tufts-New England Medical Center 
  Institute for Clinical Research and Health Policy Studies, 
  Boston, Massachusetts..........................................    38
Christopher Bellonci, M.D., Medical Director, The Walker School, 
  Needham, Massachusetts.........................................    46

                       SUBMISSIONS FOR THE RECORD

American Academy of Pediatrics, statement........................    74
Vera Hassner Sharav, statement...................................    76
Carl Smudde, statement...........................................    84
Bruce Lesley, statement..........................................    84
Jody Leibman Green, statement....................................    87
Tara Thomson, statement..........................................    89


                   PRESCRIPTION PSYCHOTROPIC DRUG USE



                     AMONG CHILDREN IN FOSTER CARE

                              ----------                              


                         THURSDAY, MAY 8, 2008

             U.S. House of Representatives,
                       Committee on Ways and Means,
        Subcommittee on Income Security and Family Support,
                                                    Washington, DC.

    The Subcommittee met, pursuant to notice, at 11:00 a.m., in 
room B-318, Rayburn House Office Building, Hon. Jim McDermott 
(Chairman of the Subcommittee), presiding.
    [The advisory announcing the hearing follows:]

ADVISORY

FROM THE 
COMMITTEE
 ON WAYS 
AND 
MEANS

                            SUBCOMMITTEE ON

                   INCOME SECURITY AND FAMILY SUPPORT

                                                CONTACT: (202) 225-1025
FOR IMMEDIATE RELEASE
May 01, 2008
ISFS-16

                     McDermott Announces Hearing on

               the Utilization of Psychotropic Medication

                      for Children in Foster Care

    Congressman Jim McDermott (D-WA), Chairman of the Subcommittee on 
Income Security and Family Support, today announced a hearing to 
examine the use of psychotropic drugs for children in the foster care 
system. The hearing will take place on Thursday, May 8, 2008, at 11:00 
a.m. in room B-318 Rayburn House Office Building.
      
    In view of the limited time available to hear witnesses, oral 
testimony at this hearing will be from invited witnesses only. However, 
any individual or organization not scheduled for an oral appearance may 
submit a written statement for consideration by the Subcommittee and 
for inclusion in the printed record of the hearing.
      

BACKGROUND:

      
    Psychotropic medications have been increasingly prescribed for 
children in recent years, but the use of these drugs appears to be 
particularly elevated for children in foster care. One recent study 
found that psychotropic drug treatment was three or four times more 
common for youth in foster care than for other children receiving 
healthcare services through the Medicaid program. Additionally, 
children in foster care are often prescribed multiple psychotropic 
medications, and sometimes these drugs are used for off-label purposes 
(i.e., meaning their effects have not been demonstrated in children). 
These medicines are most commonly used to treat depression, anxiety and 
attention-deficit/hyperactivity disorder.
      
    While the trauma associated with coming into foster care may 
increase some children's need for certain prescription drugs, the high 
rate of use of psychotropic medications in foster care has raised 
concerns regarding the monitoring of these drugs and whether a 
continuum of treatment services is being provided to these children 
beyond medication. It appears only a minority of States have 
established methods to formally regulate the use and administration of 
these medications among children in their care.
      
    In announcing the hearing, Chairman McDermott stated, ``Some 
children in foster care may need and benefit from psychotropic 
medication. But these drugs should not be used as a shortcut to treat 
foster children when more effective treatments, including counseling, 
might provide long-term benefits. We need to carefully oversee the 
prescription of these medicines, especially when it comes to placing 
foster children on multiple drugs or prescribing medication for off-
label use.''
      

FOCUS OF THE HEARING:

      
    The hearing will examine the use of prescription psychotropic drugs 
among children in the foster care system.
      

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noted above.

                                 

    Chairman MCDERMOTT. The meeting will come to order.
    I will not further apologize but to say thank you very much 
for staying. As a medical doctor and a child psychiatrist, 
today's hearing is especially important to me because the issue 
before us is not some academic, text book study case. The issue 
is real and is defined by untold numbers of foster kids who are 
taking psychotropic drugs.
    When at-risk children are taken into custody for their own 
safety, they become foster children, and we become their 
parents. Along with that comes a special obligation, I believe, 
to protect and care for them. We are here today to fulfill part 
of our responsibility by evaluating the use and supervision of 
psychotropic or mind-altering drugs for children in foster 
care.
    This review is particularly timely, since today is National 
Children's Mental Health Awareness Day. While our discussion 
may touch on the fact that all children are prescribed 
psychotropic drugs, more now than in the past, that issue is 
now largely beyond the scope of the Subcommittee. Our focus 
today is on the use and regulation of these medications for 
foster children; and, recent research presents some troubling 
findings for us.
    Here, foster children are three to four times more likely 
to be prescribed psychotropic medication than other children 
receiving Medicaid services. Got a pill, here's a problem. Got 
a pill is not the continuum of treatment options that these 
children deserve. Additionally, foster children are often 
prescribed and administered several of these drugs at the same 
time.
    We'll hear about a case study in Texas where over 40 
percent of foster children who have been dispensed psychotropic 
drugs in 2004 were concurrently receiving three or more drugs 
at one time. Finally, it appears that a significant number of 
children in foster care are prescribed these medications that 
are for off-label use; which means that its effects have not 
been demonstrated in children.
    Now, children coming into foster care have suffered various 
degrees of psychological trauma. As a child psychiatrist I have 
no doubt that some of them may benefit from medication, but I 
also worry that foster children may sometimes be prescribed 
psychotropics, because such treatment is easy and quick as 
opposed to effective and really appropriate. I think we need 
better oversight and coordination for all healthcare needs of 
foster children and I include such a requirement in the 
legislation I recently introduced called the Invest in KIDS 
Act. In terms of specific reforms that address concerns about 
over-prescribing of psychotropic drugs, three issues come to 
mind.
    First, every State should establish a review process for 
use of these medications for foster kids. Are the drugs 
appropriate and safe for kids? Is the quantity used 
appropriate; and are other treatment options available? These 
are questions that need to be asked.
    Second, foster children need continuity in their 
healthcare. Their primary physician should not change every 
time their placement does; and their medical records should not 
be split between multiple doctor's offices. This idea of a 
consistent, single healthcare provider is sometimes called a 
medical home; and, these kids need more than one home.
    Third, we need to ensure that foster children have access 
to a wide range of treatment options and a way to navigate 
through those options. Many believe the state's ability to 
achieve this goal will be undermined by the administration's 
regulation to limit Medicaid funding for so-called targeted 
case management services, which is a fancy term for helping 
people access services designed to promote their health and 
well-being.
    The House of Representatives recently passed legislation by 
a vote of 349 to 62 to suspend this and several other Medicaid 
regulations that threaten to restrict access to needed care. 
Foster kids are our kids. Jerry and I are the Godfathers of the 
foster kids of this country and we should treat them 
accordingly.
    Today, we will focus on ensuring they receive the type of 
treatment that best meets their needs and best supports their 
long-term development. I now yield to Mr. Weller.
    Mr. WELLER. Thank you, Mr. Chairman.
    In Spanish you say ``compadre,'' as the Godfather. Thank 
you for conducting this hearing, Mr. Chairman, and to our 
witnesses, thank you for your patience this morning. We had 
votes today requested by both Republicans and Democrats, and we 
expect to spend a little more time on the floor than we 
anticipated. So, I'm sorry that you were tied up and I hope 
this doesn't affect your schedules this afternoon.
    We appreciate the time you are committing to this important 
hearing today. We are here this morning to review concerns 
about the health of foster children and the healthcare provided 
them. Today, our specific topic is the use and possible overuse 
of psychotropic medications amongst these children. Children in 
foster care often have serious, mental and behavioral 
challenges.
    As we have heard in prior hearings, too many foster 
children have multiple home placements, jump from school to 
school, and are seen by multiple caseworkers and doctors with 
little consistent oversight. Foster children should have access 
to the same range of health treatments including medicines as 
other children so they can overcome their challenges and grow 
up to be healthy, productive adults.
    Through Medicaid and other programs, children in foster 
care are entitled to healthcare coverage; however, as we have 
learned from previous hearings, this does not mean that all 
foster children receive adequate care. At today's hearing we'll 
hear about the appropriateness of psychotropic medications 
provided to foster children and the systems in place to ensure 
that children are receiving proper care.
    Unfortunately, recent research points to serious questions 
about the use and possible overuse of such drugs amongst foster 
children. Given the challenges they face, it's not surprising 
that many foster children may benefit from specialized 
medications to help them deal with anxiety, depression, and a 
host of other issues.
    However, it is bracing to learn that children in foster 
care use these drugs at three to four times the rate as other 
children with Medicaid coverage. It is our responsibility to 
ensure the foster care and medical systems carefully and 
responsibly establish that foster children are being properly 
cared for. So we have many questions today.
    For example, are we sure that all foster children receiving 
drugs need them?
    Are we sure and confident that the drugs they are taking 
are appropriate for and have been proven effective in children?
    Are we sure and confident that foster children are taking 
these drugs properly and that they benefit from the drugs they 
take?
    Are some foster children receiving dangerous combinations 
of multiple drugs? Do we know whether states have proper 
systems to monitor the safety and effectiveness of these drugs 
when prescribed to foster children? Those are the types of 
questions any parent would want to know before his or her child 
takes such medications.
    As Misty Stenslie of the Foster Care Alumni Association, 
one who has personally experienced psychotropic drugs, notes in 
her testimony, we are standing in the place where the parents 
of children in foster care belong. So we need to ask these 
questions and we need to get answers.
    I look forward to testimony today and working with my 
colleagues in a bipartisan way to ensure we are doing right by 
these children. Again, thank you, Mr. Chairman, for conducting 
this important hearing and thank you to the panelists for 
joining us today. I yield back.
    Chairman MCDERMOTT. Thank you. Your testimony will be 
entered in full into the record; and, the purpose of this 
hearing really is to give us ideas about legislation that we 
can craft that will be useful across the country.
    One of the problems we're going to hear about, I think, 
here is the sort of patchwork of what we have today and we'd 
like to have your ideas about how best to deal with that so 
that we can make it not a problem whether you're raised in 
Kentucky, New Hampshire, Washington State, Illinois or 
wherever.
    You should get the same kind of treatment, more or less, 
with respect to these medications; so, we will begin by Dr. 
Zito from Baltimore, Maryland, University of Maryland.
    Dr. Zito?

 STATEMENT OF JULIE M. ZITO, PH.D., PROFESSOR OF PHARMACY AND 
PSYCHIATRY, PHARMACEUTICAL HEALTH SERVICES RESEARCH, UNIVERSITY 
                          OF MARYLAND

    Dr. ZITO. Thank you, Mr. Chairman.
    My name is Julie Magno Zito and I am really pleased to be 
invited to testify today, a professor of pharmacy and 
psychiatry at the University of Maryland in Baltimore, and my 
research focus has been on pharmico-epidemiology in the area of 
psychiatry with a particular focus on child mental health.
    We published over a hundred papers that deal with the 
various aspects of community-based medication used for 
emotional and behavioral conditions. Prior to coming to 
Maryland, I was at the New York State Office of Mental Health, 
where I developed guidelines for physician prescribing of 
psychotropic drugs for severe mental disorders.
    In the year 2000, Carol Strayhorne, Comptroller of the 
State of Texas, requested an independent analysis of 
psychotropic medication patterns for foster care children in 
the State of Texas, which we agreed to conduct with data that 
were supplied by the Texas Department of Health and Human 
Services and were then analyzed at the University of Maryland. 
So the focus of my comments to you will reflect the study on 
Texas foster care, primarily, but I would like to put it a bit 
in the context of the general overall use of psychotropic drugs 
in children in the United States.
    I would like to make four points in my 4 minutes, so these 
will be fairly brief. First, I think there is a real need for 
community-based studies of outcomes of psychotropic treatment, 
not just in foster care, but in all children, because we have 
had this dramatic, expanded use of psychotropics for emotional, 
behavioral conditions, and, most of that evidence, is based on 
clinical trial studies in volunteer populations for short-term 
use. So we really don't know the extent to which children (to 
answer Mr. Weller's question ``what do we know,'') benefit 
based on community-based populations because 
they are not likely to be the same population as were in clinica
l trials.
    The second point I'd like to make is that we have to get 
beyond symptom control in knowing that drugs really work well 
in children, so beyond symptom controls, what does that mean?
    By beyond symptom control for short term use I think we 
want to know how well children benefit in terms of academic 
performance, in terms of their development, social needs and 
social relationships; and, also in terms of safety. Finally, in 
regard to this point I think we need cooperation that could 
take place right now within every State to link relevant foster 
care agencies: one that has responsibility for oversight (which 
in Maryland we call the Department of Human Resources) and, to 
link their databases with the databases that are in the 
Maryland Medicaid System so that we can better understand 
treatment services and outcomes of care.
    This linkage is relatively inexpensive and could be done 
immediately; and, what would that allow us to do? It would 
allow us to see the level of continuity of care and to see 
these outcomes in terms of the type of placement setting that 
the children are in.
    Also, in foster care from the data in our paper, rates of 
psychotropic utilization are three to four times higher than 
the children who are in Medicaid because of low income (TANF or 
S-CHIP). More interesting even than that fact is that if you 
look at pre- schoolers in Texas, 
foster care youth, 12 percent were receiving psy- 
chotropic meds and 67 percent of the kids in the 13 to 17 years 
of age.
    So, I suggest that parents and advocates would be willing 
to say that when two-thirds of foster care adolescence receive 
psychotropic medication for behavioral and emotional problems, 
which is far, far in excess of the non-foster care population, 
we should be able to have assurances that the youth are 
benefiting from the treatments. This is not just Texas by any 
means. We have data from Minnesota, California, Delaware, and 
Pennsylvania. All of them show the same thing--relatively high 
rates.
    So to conclude this point, I would ask why don't we have 
national reporting of foster care treatment so that we can look 
at the variation by State and by region and come to a better 
understanding of what might be excessive or what might be 
appropriate? We don't know from just looking at these numbers 
and we can't really make very strong inferences about 
appropriateness, because there's no question in anyone's mind 
that the needs of these children for mental health services is 
very, very, great.
    Third point, concomitant medication use which you have 
alluded to, some people call it ``polypharmacy,'' but that's a 
pejorative word in a lot of circles so we say concomitant, 
i.e., intended to be used together. Here, the Texas data were 
pretty compelling when 73 percent of the kids on medicine were 
likely to receive two or more and forty percent three or more 
psychotropic drug classes.
    What do those concomitant classes tell you? That they are 
likely to be anti-depressants or anti-psychotics, although the 
population that's actually being treated for psychosis is far 
smaller than the antipsychotic use suggests; and, the third 
group is stimulants. So that's the story in terms of 
concomitant use.
    Why do we worry about that? Well, first of all as you said 
it's virtually all off-label, so there's very little basic work 
that's been done to support their efficacy or safety, even in 
ideal populations, let alone in community-based populations.
    The fourth point is that more therapeutic research is 
needed because pediatric populations are not the same as 
adults. Children are not little adults, as we all learned a 
long time ago, and even their adverse event profile looks 
remarkably different. So we're really looking at experimental 
experience, which may be what the SSRI safety concerns pointed 
out to us 2 years ago. Related to concomitant use, the fact is 
that more drugs used together present more opportunities for 
expanded adverse events. So, what could we do about drug 
safety?
    We could get serious in the United States about drug 
safety, in order to look for low frequency (rare) events. 
You've got to look out there in the community, in the usual 
practice population, not only in the ideal subjects who come 
into clinical trials.
    We need money and funding for that naturally, and that 
sounds very self-serving. Beyond the money and funding for it, 
I think we need a change in the way we approach the answer to 
the question ``does this drug work and in whom?'' Then, last 
point is on oversight. Here I would laud Illinois and Tennessee 
for their more creative approaches to the question of how to 
perform oversight.
    In general, oversight is pretty weak. There are no 
consequences if a physician gets a letter in the mail. Who 
knows why five or more concomitant psychotropic classes for a 
child is an adequate cut point to signal oversight review. 
There's absolutely no empirical evidence--none--zero. It seems 
to be copied somewhere from adult standards which might be 
reasonable, but in children, it's a really strange number.
    So we recommend that there be the kind of oversight that 
Illinois and Tennessee are suggesting after somebody's on three 
concomitant classes at one time. I'll stop there.
    [The prepared statement of Ms. Zito follows:]

              Prepared Statement of Julie M. Zito, Ph.D.,
      Professor of Pharmacy and Psychiatry, Pharmaceutical Health
          Services Research, University of Maryland, Baltimore

    My name is Julie Magno Zito. Thank you for the invitation to 
testify today. I am a Professor of Pharmacy and Psychiatry at the 
University of Maryland, Baltimore. I have received more than 4 million 
dollars in NIH and foundation support. This support has allowed me to 
pursue pharmacoepidemiologic research as a specialty in the area of 
psychiatry, with a focus in the area of child mental health. Our team 
of specialists includes child psychiatrist and pediatrician 
researchers, pharmaceutical computing experts and epidemiologists and 
together we have published nearly 100 research papers on population-
based medication use for the treatment of emotional and behavioral 
conditions. Prior to this position, I was a research scientist at the 
Nathan Kline Institute in New York where I developed guidelines for 
physician prescribing of psychotropic drugs for severe mental disorders 
(Zito, 1994). In 2006, Carole K. Strayhorn, Comptroller of the state of 
Texas requested an independent analysis of psychotropic medication 
patterns for foster care children in Texas which we agreed to conduct 
with data supplied by the Texas Department of Health and Human Services 
and analyzed at the University of Maryland. The results of that 
analysis are the focus of my report today.
OBJECTIVES FOR THE PREPARED TESTIMONY
    My objective for the prepared testimony is to present and support 
four major points.
    Need for Community-based Studies on Outcomes of Psychotropic 
Treatment. Since 1990, the expanded use of psychotropic medication to 
treat emotional and behavioral problems in U.S. youth has caught the 
attention of the media without adequately informing the public of 
evidence of beneficial and appropriate use. To address this important 
gap in our knowledge base on the benefits and risks of such treatments 
requires sustained study in community-based youth populations--not just 
in clinical trial volunteers. Post-marketing studies are particularly 
important to identify and describe patient outcome in terms of academic 
performance, social development and avoidance of negative outcomes, 
e.g. crime, substance abuse and school failure--in other words, beyond 
symptom control. In the current U.S. research environment, most 
medication research focuses on symptom improvement in short-term 
clinical trials which is necessary but not sufficient information to 
establish the role of medication in community-based pediatric 
populations. Therefore, we recommend outcome studies of community-
treated youth--for all youth, but particularly in foster care and 
disabled youth because they have the greatest likelihood of receiving 
complex, poorly evidenced, high cost medication regimens. Cooperation 
between the state agency responsible for oversight of child welfare and 
the Medicaid administration would permit databases to be linked so that 
the continuity of care and outcome in foster care can be assessed 
according to the type of placement setting.
    High Foster Care-specific Prevalence of Psychotropic Medication 
Use. Among community-based populations, foster care youth tend to 
receive psychotropic medication as much as or more than disabled youth 
and 3-4 times the rate among children with Medicaid coverage based on 
family income [temporary assistance for needy families (TANF) or state-
Children's Health Insurance Program, (s-CHIP)]. For example, in 2004, 
38% of the 32,000+ Texas foster care youth less than 19 years of age 
received a psychotropic prescription (Zito et al., 2008). When 2005 
data were disaggregated by age group the 2005 annual prevalence of 
psychotropic medication was: 12.4% in 0-5 year olds; 55% in 6-12 year 
olds; and 66.5% in 13-17 year olds. When two-thirds of foster care 
adolescents receive treatment for emotional and behavioral problems, 
far in excess of the proportion in non-foster care population, we 
should have assurances that the youth are benefiting from such 
treatment. Relatively high annual prevalence of psychotropic 
medications also has been reported for foster care youth in Minnesota 
(Hagen & Orbeck, 2006), Maryland (dosReis, Zito, Safer, & Soeken, 2001; 
Zito, Safer, Zuckerman, Gardner, & Soeken, 2005), Delaware (dosReis et 
al., 2005), California (Zima, Bussing, Crecelius, Kaufman, & Belin, 
1999), and Pennsylvania (Harman, Childs, & Kelleher, 2000). 
Collectively, these patterns raise questions but do not address 
appropriateness and the role of medication in this vulnerable and needy 
population. Whether medication addresses the social, environmental and 
developmental needs of youth where unstable family structures are the 
norm is unknown.
    Data for descriptive utilization studies are readily available 
through the Center for Medicaid and Medicare (CMS), and are relatively 
inexpensive to organize and analyze but as yet there is no national 
reporting of foster care treatment. Questions about why, typically 
foster care youth exceed the use of psychopharmacologic drugs observed 
in disabled youth deserve to be explored from a broader, societal 
perspective as well as from a clinical perspective. Poverty, social 
deprivation, and unsafe living environments do not necessarily justify 
complex, poorly evidenced psychopharmacologic drug regimens.
    Concomitant Psychotropic Medication Patterns in Foster Care with 
Little Evidence of Effectiveness or Safety. Combinations of medication 
are prescribed in order to address multiple symptoms. The sparse data 
on such practice patterns suggest that it is increasing (Safer, Zito, & 
dosReis, 2003). To assess concomitant psychotropic classes in the Texas 
foster care data, we selected a one month cohort of youth in July 2004 
and found 29% (n=429) received one or more classes of these 
medications. Of these psychotropic-medicated youth, 72.5% received two 
or more psychotropic medication classes and 41.3% received 3 or more 
such classes. In such combinations, more than half the medicated youth 
had an antidepressant (56.8%); a similar proportion (55.6%) had an ADHD 
medication (a stimulant or atomoxetine) dispensed, and 53.2% had an 
antipsychotic dispensed. Most psychotropic combinations lack adequate 
evidence of effectiveness or safety in youth. Typically, they are 
adopted based on knowledge generalized from adult studies or assume 
that the combination is as safe and effective as each component of the 
regimen. Such assumptions, however, are not warranted because data 
reveal that children and adolescents differ from adults in adverse drug 
reactions to psychotropic medications (Safer, 2004; Safer & Zito, 
2006). In addition, pediatric research shows that increasing the number 
of concomitant medications increases the likelihood of adverse drug 
reactions (Turner, Nunn, Fielding, & Choonara, 1999; Martinez-Mir et 
al., 1999). Long-term safety and drug-drug interactions are also more 
problematic. Data show that poorly evidenced regimens tend to increase 
in complexity over the age span suggesting that polypharmacy is not 
effective in managing the multiplicity of problems of foster care youth 
and others with serious social, behavioral and mental health problems 
who are often referred to as treatment-resistant or difficult to treat 
(Lader & Naber, 1999). This is particularly true when observing youth 
with repeated hospitalizations. In the Texas cohort, 13% had a 
psychiatric hospitalization in the study year and 42% of these had a 
psychiatric hospital diagnosis of bipolar disorder. As younger age 
youth receive psychotropic medications, the early introduction of 
medications to the developing youth (12% of preschoolers in these data 
from Texas), suggests the need for drug safety studies. Drug safety 
studies require access to large community-based data sets, formation of 
cohorts for longitudinal assessment over successive years and 
epidemiologic methods for conducting observational safety studies. Yet, 
funding and training of clinical scientists for this type of research 
is quite modest (Klein, 1993; Klein, 2006) while the FDA is largely 
focused on the pre-marketing assessment of new drugs (APHA Joint Policy 
Committee, 2006).
    Concomitant medication with antipsychotics and anticonvulsant-mood 
stabilizers is referred to as ``off-label' usage, i.e., lacking FDA 
approved labeling for either the age group or the indication for 
treatment, e.g. an antipsychotic for ADHD or disruptive disorders. In 
the Texas foster care data, most antidepressant use was also off-label. 
Moreover, when the drug class use was compared among the leading 
diagnostic groups, there was little evidence of specificity. In youth 
with 3 or more medication classes, antipsychotic medications were used 
in 76.1% of those with an ADHD diagnosis; 75.8% of those with 
adjustment or anxiety diagnoses; and 84.1% of those with a depression 
diagnosis. If medication regimens increase the risk of adverse events 
without robust evidence of benefits (outcomes), prudence suggests that 
oversight programs monitor and review therapeutic interventions in 
professionally competent, individualized, and caring assessments.
    Foster Care Oversight, Quality Assessment and Public Health-
oriented Prescriber Education. Quality assurance programs for 
psychopharmacologic treatments aim to review and assess the 
appropriateness of therapy. Such programs are understandably weak 
because: 1) record reviews are not always accurate; 2) multiple 
prescribing physicians may account for prescriptions that are not 
actually in use; 3) computerized systems that trigger automatic warning 
letters frequently have no impact (Soumerai, McLaughlin, & Avorn, 1990) 
in part because there are no consequences for prescribing outside the 
guidelines. In the Texas Medicaid system, the Texas Department of State 
Health Services panel produced practice guidelines for youth in 
Medicaid in 2005 (Texas Dept of State Health Services, 2005). They 
concluded that a department review should be required if antipsychotic 
agents and antidepressants were prescribed for youth under 4 years of 
age, stimulants under 3 years of age, if 2 or more drugs from the same 
class were prescribed concomitantly, and if 5 or more different classes 
of psychotropic medication were prescribed concomitantly. Five months 
after promulgating these criteria, there was a 31% drop in use of 5 or 
more psychotropic classes among foster care youth (Texas Health and 
Human Services Commission, 2006). Illinois and Tennessee foster care 
programs have implemented oversight based on a central or regional 
academic reviewing process that is intended to keep prescribing 
physicians up to date on current practice and to discourage unnecessary 
or potentially unsafe regimens. This is a laudable step in the 
direction of more nuanced, comprehensive reviews and allows for a 
patient-specific, individualized review. If such programs are evaluated 
formally, they can provide valuable information on the feasibility and 
success of this approach to improve the quality of psychotropic 
medications for foster care.
    We recommend that the criterion for triggering an individualized 
patient record review is the dispensing of 3 or more concomitant 
psychotropic medication classes in youth given that such drug use lacks 
supportive evidence and systematic safety studies, and is off-label in 
almost all instances. Essentially, 3-drug class regimens have 
inadequate evidence for a therapeutic benefit and safety in youth. 
Additional appropriate triggers include young age (antipsychotic or 
antidepressant in <4 years olds) and 2 or more drugs used concomitantly 
within the same class.
BACKGROUND
Increased Psychotropic Medications for Youth: Good News or Bad News?
    Medicaid insurance covers vulnerable pediatric populations 
including youth with disabilities and those in foster care, as well as 
youth qualifying by low family income [temporary assistance to needy 
families (TANF) and state-Children's Health Insurance Program (s-
CHIP)]. The treatment experience of Medicaid youth is accessible for 
population-based research because the Center for Medicaid and Medicare 
Services (CMS) is a repository of detailed administrative data on 
outpatient visits and medication dispensings along with demographic 
data including race/ethnicity and enrollment characteristics. These 
data enable researchers to create yearly trends in health service use 
including psychotropic drugs across states.
    Since 1990, psychotropic medication use in children and adolescents 
has increased dramatically across all insured youth (Zito et al., 
2003). Among more than 900,000 youth with either Medicaid or HMO 
insurance coverage, administrative claims data from the community 
showed the use of a psychotropic medication was 2-3 times greater in 
1996 than 10 years earlier. In general, Medicaid youth receive more 
mental health services including psychotropic medications than 
commercially-insured youth because they have more impairments (Shatin, 
Levin, Ireys, & Haller, 1998). Data on Medicaid-insured youth in a 
northeastern state showed 8.9% of youth less than 19 years old received 
a psychotropic medication in 2007 (Pandiani & Carroll, 2008). 
Remarkably, antipsychotic use increased approximately 6-fold between 
1997 and 2007. While the rising use affects all age groups, the rise is 
particularly notable in preschoolers. Medicaid-insured preschoolers 
from 7 states were 5-times more likely to received an antipsychotic and 
twice as likely to receive an antidepressant in 2001 compared with 1995 
data from 2 other states (Zito et al., 2007). The trend toward 
increased prevalence of psychotropic medication is similar in 
commercially-insured youth although the annual rate is lower. This 
trend is illustrated by national parent survey data [Medical 
Expenditure Panel Survey, MEPS] for the 1987-1996 decade and showed 
similar growth (Olfson, Marcus, Weissman, & Jensen, 2002). In summary, 
population-based analyses of psychotropic usage patterns for youth show 
variations in use according to region, race/ethnicity, type of 
insurance, as well as clinically relevant differences in age group, 
gender and type of condition (Zito, Safer, & Craig, 2008). When the 30% 
of U.S. youth with Medicaid insurance are analyzed according to 
eligibility, foster care is likely to be the group receiving the 
highest rates of psychotropic medication relative to the disabled 
(eligible by Supplemental Security Income) and those with income 
eligibility.
Foster Care Psychotropic Medication Use
    Demographic Profile of Foster Care Youth in the United States. In 
2005, 514,000 youth were in publicly supported foster care--less than 
1% (0.7%) of the 74 million youth less than 18 years of age 
(Administration for Children Youth and Families, 2008). Data from 2000 
showed gender is equally split. A majority is 6-15 years old: 11-15 
year olds (29%); 6-10 year olds (25%); 1-5 (24%); 16-18 year olds 
(16%); and the remainder are less than 1 and over 18. In FY 2000, 
African-American youth represented the largest share of children in 
foster care (41%) followed by White (40%), Hispanic (15%) and Native 
American (2%). These race/ethnicity characteristics are 
disproportionately high relative to the U.S. population of African-
Americans (15%) and Native Americans (1%). Length of stay data indicate 
that 55% of youth are in foster care for less than 2 years. As children 
age, their chances of reaching optimal residency (permanency goal) 
diminishes. A large majority of youth in foster care live in a non-
relative foster home (47%) or in a relative foster home (25%). Most 
youth return to parental care (57%) while adoption or living with 
relatives occurs in 27% of cases. Against this statistical demographic 
profile, we will explore the medical treatments for behavioral and 
psychiatric conditions with a focus on psychotropic medications.
    Psychotropic Prevalence in Foster Care. Among the 32,135 Texas 
foster care Medicaid enrollees less than 20 years old in the study year 
September 2003 to August 2004, 37.9% of youths had a psychotropic 
medication dispensing (Zito et al., 2008). This figure contrasts with 
25.8% (CI 25.0-26.6) annual prevalence from a Mid-Atlantic foster care 
population in 2000 (Zito et al., 2005). In 1998, 34% of youth ages 3-16 
in St. Louis County, Minnesota Family Foster Care had at least 1 
psychotropic medication dispensing. This compared with 15% of youth 
receiving a psychotropic medication in the general population (Hagen et 
al., 2006).
    Among Medicaid enrollees less than 20 years old in a populous 
suburban county of a mid-Atlantic state in 1996, psychotropic treatment 
prevalence rates for foster care youths were 1.7 (95% CI=1.4,2.2) times 
higher than those for SSI youths and 18 (95% CI=14.9,22.7) times higher 
than those for youths in the other aid group (dosReis et al., 2001). 
Other aid refers primarily to eligibility based on income or medical 
need.
    In FY 1995, Medicaid claims from foster care youth 5-17 
continuously enrolled youth in Southwestern Pennsylvania showed these 
children were 3 to 10 times more likely to receive a mental health 
diagnosis. They were 7.5 times more likely to be hospitalized for a 
mental health condition than children covered by AFDC. Prevalence of 
psychiatric conditions was comparable between foster care and disabled 
youth (Harman et al., 2000).
    Foster care youth with a diagnosis of autism spectrum disorder 
(ASD) were twice as likely to receive concomitant drug therapy (defined 
as 3 or more medication classes overlapping for more than 30 days in 
the year 2001) compared with their counterparts eligible by low family 
income. Findings from this large national sample suggest that factors 
unrelated to clinical presentation may account for these prescribing 
practices and warrant further research ((Mandell et al., 2008).
Concomitant Psychotropic Medications: More Than One in the Same Class 
        or Between Classes
    A recent review of the sparse literature on concomitant 
psychotropic medication use in youth revealed that this treatment 
regimen was rarely used in children in the late 1980s (Safer et al., 
2003). Bhatara et al. showed concomitant use for the treatment of 
attention deficit hyperactivity disorder (ADHD) based on national 
ambulatory medical care survey (NAMCS) data increased 5-fold from 1993 
through 1998 (Bhatara, Feil, Hoagwood, Vitiello, & Zima, 2002). Across 
all conditions, there was an increase of 2.5-fold from 4.7% to 11.6% 
using MEPS data that was observed by Olfson et al. for the period from 
1987 through 1996 (Olfson et al., 2002). In general, this review 
suggests that concomitant use of psychotropic medications in youth is a 
recent phenomenon. Common combinations include stimulants and clonidine 
(Zarin, Tanielian, Suarez, & Marcus, 1998) and stimulants and 
antidepressants (Zito et al., 2002).
    Concomitant use is likely to be greater in populations treated by 
psychiatrists than those treated by pediatricians. (Bussing, Zima, & 
Belin, 1998) showed that in a Florida school district-wide sample of 
elementary school age special education youth, concomitant psychotropic 
use occurred in 48% of psychiatrist-treated youth compared with 6% of 
pediatrician-treated youth.
    In the Texas study, in a one month cohort (July 2004), 72.5% of the 
medicated youth received concomitant medications (Zito et al., 2008). 
Among the medicated youth, 41.3% received *3 psychotropic medication 
classes concomitantly, 15.9% received *4, and 2.1% received *5 classes. 
The rank order of the most common concomitant psychotropic class 
combinations was as follows: antipsychotics with ADHD medications, 
antipsychotics with antidepressants, antidepressants with ADHD 
medications, and anticonvulsant-mood stabilizers with antidepressants 
(Zito et al., 2008). Generally, psychotropic treatment by medication 
class was not specific relative to the leading diagnostic groups 
(Depression; ADHD; Adjustment/Anxiety). To illustrate, 76 to 84% of 
youth with 3 or more concomitant classes had antipsychotic dispensings 
regardless of the diagnostic group and the vast majority reflected 
behavioral and emotional symptoms, i.e. non-psychotic use. At the time 
of the study, all antipsychotic and anticonvulsant-mood stabilizer use 
was off-label use, i.e. without FDA-approved labeling for an 
indication, dose or age group (Roberts, Rodriguez, Murphy, & Crescenzi, 
2003).
Foster Care Oversight for Medication Quality of Care
    Clinical guidelines on foster care services have been produced by 
professional organizations, e.g. The American Academy of Child and 
Adolescent Psychiatry (American Academy of Child and Adolescent 
Psychiatry, 2008). Their standards focus on minimal and ideal 
recommendations. The recommendation on requests by the prescribing 
physician for consultation with child and adolescent psychiatry experts 
is only initiated by the requesting physician. The American Academy of 
Pediatrics statement on healthcare of young children in foster care 
recommends more frequent monitoring of the health status of children in 
placement than for children living in stable homes with competent 
parents (American Academy of Pediatrics, 2002).
    Clinical education teams working the public sector are known as 
academic detailers and have been shown to be effective (Soumerai & 
Avorn, 1990). Ideally, a team of clinical pharmacists led by a 
psychopharmacologist in child psychiatric drug therapy could work to 
balance drug information originating from proprietary-funded thought 
leaders. Such an approach could lead to a balance between a marketing 
perspective and a long-term public mental health perspective.
    Another concern of Medicaid treatment is cost. In the Texas data we 
analyzed, very expensive psychotropic medications were prescribed, 
including antipsychotic agents (averaging $22/month) and 
anticonvulsant-mood stabilizers (averaging $110/month). In fact, over 
50% of the Medicaid expenditures for the foster care youth in FY 2004 
were for antipsychotic medications (Strayhorn, 2006). In light of the 
vast public expenditures and services related to medication use, 
public-interest academic detailing should be encouraged.
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Psychiatric Services, 56, 157-163.

                                 

    Chairman MCDERMOTT. Thank you for your testimony.
    Dr. Jeffrey Thompson is a physician in Washington State. 
Dr. Thompson?
    Dr. THOMPSON. Thank you Representative McDermott.
    Chairman MCDERMOTT. Thank you for coming all this way.
    Dr. THOMPSON. Yes, well, I was actually at CMS all week so 
this was an easy drive, somewhat easy from Baltimore.

    STATEMENT OF JEFFERY THOMPSON, M.D., MEDICAL DIRECTOR, 
   WASHINGTON STATE DEPARTMENT OF SOCIAL AND HEALTH SERVICES

    Dr. THOMPSON. My name is Jeff Thompson. I am the Chief 
Medical Officer for Washington State Medicaid.
    I want to thank you for the opportunity to testify on this 
very important topic. I want to also talk about what Washington 
State is doing. Our leaders in Washington State are doing some 
great stuff; and, so, I want to cover what's happening there 
and how the leadership is emphasizing integration of services 
as well as outcomes in safety. Safety is something, I think, we 
can all stand on.
    Second, I want to talk about our findings using pharmacy 
claims data, which show some serious variations in pharmacy 
practice and children in foster care.
    Third, the importance of forming good working relationships 
with the family and children's communities as well as the 
providers, because we can't do it without them. You can't just 
put administrative controls, but what we have been able to do 
is show data that bring everybody to the table including the 
drug companies.
    Finally, I want to talk about how we're attempting to find 
national best practices by working with the National 
Association of Medicaid Directors and Carol Clancy at the 
Agency for Healthcare Quality and Research, AHRQ. I want to 
recognize the leadership of our Governor, Christine Gregoire, 
as one of the key leaders, as well as key Washington State 
House and Senate leaders, in particular, Mary Lou Dickerson and 
James Hargrove as well as my Secretary, Ms. Robin Arnold-
Williams.
    With their guidance, our Medicaid program is integrating 
mental health services under legislation house bill 1088. 
Simply, this State statute puts children at the center of care 
and ensures that the medical care, the mental healthcare, and 
the family services are all integrated. We are trying. It's 
difficult to do. We accomplish this by trying to integrate 
treatment protocols by increasing the amount of community-
based, mental health services available to children in foster 
care by educating our primary care physicians and our mental 
health professionals, and using an evidence-based practice 
center at the University of Washington with Dr. Trupin to set 
safety standards for review of medication and prescription 
histories setting thresholds.
    We are also piloting wrap-around programs for family 
services. We are equally concerned as the Committee with the 
trend of increased medication use in children as well as adults 
and the elderly. Using our pharmacy claim system, we note an 
increasing use of off-label drugs and medications, multiple 
medications, poly pharmacy, whatever the correct term is. We 
also note that there are many providers or prescriptions that 
are happening for a single client, so we are concerned about 
whether there is good continuity of care; and, we have 
questions about medication adherence. When prescribed, are they 
actually taking it?
    These issues, in short, may or may not be in the best 
interest of our clients, both the children and vulnerable 
adults in foster care. We note that parents are seeking 
services from across the State, across the Cascade Mountains. 
They go up and down the I-5 corridor, sometimes great 
distances, to find care. This is not the best medical home or 
coordination of care.
    In foster care, we note a high use of mental health 
medications, combinations sometimes exceeding the FDA adult 
doses in children of very low ages; and, finally, we have 
shared with the community these regional variations in poly 
pharmacy or concurrent use and are working with the University 
of Washington as well as advocacy communities, the primary care 
communities, the mental health communities, the target pilot 
programs where we see high variations in care. In short, we 
cannot do this without working across our agencies; so we are 
actually working with our children's administration our DD 
populations, our aging and disability agency as well as anybody 
we can find to bring the provider types of drug companies, our 
contracted services, to basically lay out the full story of 
what's happening.
    Washington State Medicaid believes that improving care and 
reducing the variation can only happen by working with 
community providers and advocacy groups. We do this by a 
continuous collaboration on database snapshots from our claims 
data and our pharmacy data for the care of the population. The 
examples, I might add, are showing them that the number of 
children who are under the age of 5 that are getting anti-
psychotics, sometimes as low as age 1 or less.
    Looking at the number of foster kids that are on five or 
more mental health drugs concurrently, looking at adherence 
histories to find out whether they actually picking up the 
medications that are being prescribed and what are the presence 
of county variations and dosing variations that exceeds agreed-
upon safety thresholds. We find this data actually allows us to 
be collaborative and bring everybody to the table; and then we 
have successfully set community standards across the State. We 
accomplish this positive change with mood stabilizers, anti-
depressants, stimulant use and ADHD, and we will shortly sell 
safety thresholds for anti-psychotics and children's 
healthcare.
    We note that the data is presented in a non-judgmental 
manner. This brings the Committee together, and I might add, 
the drug companies are actually at the table when we discuss 
this. What we want to do is stop and take a short, deep breath 
and review the treatment plans to ensure that there's an 
integrated plan for the treatment.
    Recently, our safety standards for stimulants have steered 
as many as 56 percent of prescriptions for stimulants to lower 
dose, fewer medications, and sometimes to rethink prescriptions 
in the very young. Note that 44 percent of prescriptions that 
are at high dose are in the very young, when our community and 
us agree that this is actually the appropriate use. So, it's 
very complex. It's an all or nothing. There's a lot of gray 
here.
    Finally, Washington State can't do this alone. When you 
look across the country you see antipsychotic use varies among 
states. When we look at the entire population it's as varied 
between 4 and 13 percent of the entire Medicaid population in 
some states, maybe on antipsychotics. Since there's so much 
variation, the Medicaid medical directors across the country 
have asked the National Association of Medicaid Directors and 
Carol Clancy at AHRQ to sponsor an up-to-date pharmacy claims 
review and then do a program to benchmark best practices.
    If we can highlight these best practices, like the Texas 
algorithms, the Massachusetts provider consultations, the New 
York and Rutgers integration project, Arizona's mental 
healthcare contracts, or the San Diego project to improve 
medication adherence and other programs, this will help us to 
find the best evidence-based care with the appropriate mix of 
State services.
    Thank you for the opportunity to testify on this important 
topic.
    [The prepared statement of Dr. Jeffery Thompson follows:]

    Prepared Statement of Jeffery Thompson, M.D., Medical Director,
       Washington State Department of Social and Health Services,
                          Olympia, Washington

    I want to thank you for this opportunity to testify on the 
important topic of medication use in children--and more specifically, 
children in foster care. I will be brief in my testimony, which will 
cover four items:

    1.  First, I will cover what is happening in Washington State's 
Medicaid program, where we are leaders in emphasizing the integration 
of services, outcomes and safety.
    2.  Second, our findings using Medicaid-paid pharmacy claims 
indicate serious variations of prescription practice for children and 
foster care.
    3.  Third, the importance of forming a good working relationship 
with the child 
and family's community, while using data to reduce variation and improve
 care.
    4.  Finally, how we are attempting to find ``best practices'' among 
Medicaid programs nationally by working with the National Association 
of Medicaid Directors (NASMD) and the Agency for Health Research and 
Quality (AHRQ).

    I want to recognize the leadership of our Governor, Christine 
Gregoire, as well as key members of the Washington House and Senate (in 
particular, Representative Mary Lou Dickerson and Senator James 
Hargrove), and the Secretary of the Department of Social and Health 
Services (Robin Arnold-Williams). With their guidance, our Medicaid 
program is integrating mental health services under legislation known 
as HB 1088. Simply, this state statute puts the child at the center of 
care and ensures that medical, mental health and family services are 
integrating all care, communicating care plans, and tailoring 
individualized services with families for care of the child. We 
accomplish this through integrated treatment planning, increasing 
mental health community-based services, educating Primary Care 
Providers (PCPs) and mental health providers in evidence-based 
practices, setting safety standards to review prescriptions that exceed 
safety thresholds, and piloting ``wraparound'' services for the family.
    We are concerned over the trend of increasing medication use in 
children as well as adults, and the elderly. Using our pharmacy claims 
system we note an increasing use of ``off label'' medications, use of 
multiple medications, use of multiple providers to direct care, and 
questions about medication adherence--issues that in short may or may 
not be in the best interest of our children and vulnerable adults.
    We note that parents seek services across the state--sometimes very 
distant from their residence. In foster care we note a higher use of 
mental health medications and combinations--sometimes exceeding FDA 
dosing for adults. Finally we have shared with the community the 
regional variations in poly-pharmacy and are working with the 
University of Washington and the advocacy community as well as primary 
care and mental health providers to target our pilot projects to areas 
of variation in foster care services. These pilots will allow providers 
to call or seek Web-based consultations during business hours based on 
evidence-based standards. But, we cannot do this alone and must work 
across agencies, provider types, contracted services and the community 
to understand the full story.
    Washington Medicaid believes that improving care and reducing 
variation can only happen by working with community providers and 
advocacy groups. We do this by continuous collaboration on data-based 
snapshots of care in the population. Examples include the number of 
children under 5 years old on anti-psychotics, the number of foster 
children on five or more mental health drugs concurrently, the lack of 
adherence to the medications, the presence of county variations, and 
dosing variations that exceed safety thresholds. This is data we share 
with partners including the state's Pharmacy and Therapeutics 
Committee, the mental health work group (which includes drug companies, 
advocacy groups, primary care and mental providers) and, importantly, 
our sister agencies. We find data and collaboration can successfully 
set community standards of care.
    We have accomplished this positive practice change for mood 
stabilizers, antidepressants, stimulants to treat ADHD, and will 
shortly set safety thresholds for anti-psychotics. We note that when 
data is presented in a non-judgmental manner the community can work 
with the state to ``stop and take a deep breath'' and review care plans 
in an integrated framework. Recently, our safety standards for 
stimulants have steered 56% of prescriptions to lower doses, fewer 
scripts or encouraged prescribers to rethink stimulant use in the 
young. Please note that 44% of pharmacy care is continued. This 
emphasizes that the clinical picture is complex--and some kids do need 
these medications.
    Finally, this is not an issue for Washington State alone. When we 
look across the country we see antipsychotic use that varies between 
states--as much as 4% to 13% in the Medicaid populations. Because there 
is so much variation, the Medicaid medical directors asked NASMD and 
AHRQ to sponsor an up-to-date pharmacy claims and program benchmarking 
project. We hope this benchmarking will highlight ``best practices'' 
like the Texas algorithms, the Massachusetts provider consultations, 
the New York and Rutgers integration project, the Arizona mental health 
contracts, the San Diego projects to improve medication adherence, and 
other programs that will help to define the best evidence-based care 
and the appropriate program mix for state services.
    Thank you for the opportunity to testify on this important topic.

    [GRAPHIC] [TIFF OMITTED] 45553A.001
    
    [GRAPHIC] [TIFF OMITTED] 45553A.002
    

                                 

    Chairman MCDERMOTT. Thank you for your testimony.
    I would like to say I realize I kept you a long time 
waiting. We would like you try and hold your time to 5 minutes.
    Dr. Lea from Tennessee.

    STATEMENT OF TRICIA LEA, PH.D., DIRECTOR OF MEDICAL AND 
     BEHAVIORAL SERVICES, DEPARTMENT OF CHILDREN'S SERVICES

    Dr. LEA. Mr. Chairman and Members of the Committee, thank 
you for the opportunity to talk with you today.
    My name is Tricia Lea and I am here to testify on behalf of 
the American Public Human Services Association, it's affiliate, 
the National Association of Public Child Welfare Directors, and 
the State of Tennessee where I serve as the Director of Medical 
and Behavioral Services for the Department of Children's 
Services.
    The Tennessee child welfare system has been under intense 
scrutiny since May of 2000 when the lawsuit was filed on behalf 
of children who had experienced difficulties while in State 
custody. One concern in the lawsuit focused specifically on the 
inappropriate use of psychotropic medications, and the 
subsequent settlement agreement required the department to hire 
a full-time medical director specifically to oversee the 
implementation of policies and procedures concerning the use of 
psychotropic medication for children in State custody.
    I serve in this medical director position and would like to 
share with you our child welfare agency's progress in this 
area. Tennessee began a reform by conducting an in-depth 
evaluation of policies and practices with the assistance of Dr. 
Christopher Bellonci, who is also here to testify today.
    He and I co-facilitated a multi-disciplinary work group 
that developed five policies related to the use of medication. 
Dr. Bellonci also drafted the initial DCS medication monitoring 
guidelines as a tool for our case managers to use in monitoring 
the psychotropic medications prescribed for children in their 
care.
    An initial review of a sample of children's case files 
audited by the lawsuit's Federal monitor found that 
approximately 25 percent of children in custody were prescribed 
psychotropic medications in 2003. Despite some fluctuation, the 
numbers of custody-children prescribed medication have declined 
and currently average around 20 percent with the majority of 
these children being the adolescents and being prescribed one 
or two psychotropic medications.
    Tennessee has also hired a part-time consulting child and 
adolescent psychiatrist, Dr. Deborah Gatlin, who has 
established a pharmacy and therapeutics Committee to review 
medication practice across the State. This Committee has also 
assisted in updating the DCS medication-monitoring guidelines 
using the standards that were developed by the State of Texas.
    Cases that fall outside of the utilization parameters are 
reviewed at several levels in our State. DCS has a statewide 
network of nurses and psychologists that monitor healthcare for 
our children, including the use of psychotropic medication, 
along with the consulting child psychiatrist, a pediatric nurse 
practitioner, and myself.
    Outside of our agency we have five centers of excellence 
that are partnerships with the State of Tennessee and academic 
medical centers and community providers. These centers were 
created to serve children in and at risk of custody and they 
provide a second opinion capacity for children regarding 
prescriptions of psychotropic medications.
    The review of medications falling outside our parameters 
have also become automated via our database system, and this 
happened in the fall of '07. Anytime a medication regimen falls 
outside of the parameters, the system automatically sends an e-
mail alert to our psychiatrist triggering further review. The 
majority of cases that she has reviewed have been found to be 
clinically appropriate care for our kids.
    The updated child welfare database also allows for more 
accurate tracking of all health information and all health 
services for the children in custody. The system provides an 
ongoing summary which acts as a health passport for the child 
and this summary is shared with all care givers and providers 
serving the child and is similar to what Texas has developed.
    Tennessee is able to see cases in which children and youth 
in our custody have benefited from the oversight and monitoring 
processes we have put in place regarding medication. One 
example that I want to share is about a child who is 14 years 
old. He is in full guardianship. Parental rights have been 
terminated and he has had multiple diagnoses, including mild 
mental retardation, bipolar disorder, impulse control disorder, 
and psychotic disorder. He was placed at a residential 
treatment facility, but was continuing to require frequent, 
acute, psychiatric hospitalizations. He was prescribed six 
psychotropic medications at the same time. When our DCS 
regional nurse reviewed these medications to give consent, she 
contacted our psychiatrist, because the combination fell 
outside several of our utilization parameters.
    The psychiatrist was concerned enough about this 
combination and this child's care and the frequent medication 
changes that she wanted his psychiatric care to transfer to our 
regional centers of excellence. The youth has now been taken 
off several of these psychotropic medications, is in a family 
foster home, and is doing fairly well.
    The State of Tennessee Department of Children's Services 
has made significant progress regarding psychotropic medication 
practices for children in custody. We continue to work to 
ensure that children in custody have all of their health needs 
adequately addressed and that those who are prescribed 
psychotropic medication are only done so when clinically 
indicated.
    In those cases we want to assure that if medication is 
appropriate, informed consent is given and ongoing monitoring 
occurs. Additionally, Tennessee is working diligently to assure 
that psychotropic medication is not used inappropriately or as 
a means of control, punishment, or discipline for a child or 
for the convenience of staff or care givers.
    Thank you very much for the opportunity to testify on this 
important topic.
    [The prepared statement of Tricia Lea, Ph.D., follows:]

                Prepared Statement of Tricia Lea, Ph.D.,
              Director of Medical and Behavioral Services,
         Department of Children's Services, State of Tennessee
Introduction
    Thank you for the opportunity to submit testimony regarding the use 
of psychotropic medication among children in the child welfare system. 
My name is Tricia Lea, Ph.D., and I am submitting testimony on behalf 
of the State of Tennessee, where I serve as the Director of Medical and 
Behavioral Services for the Department of Children's Services (DCS), 
and the National Association of Public Child Welfare Administrators 
(NAPCWA), an affiliate of the American Public Human Services 
Association (APHSA). APHSA is a nonprofit, bipartisan organization 
representing state and local human service professionals for over 77 
years. NAPCWA, created as an affiliate in 1983, works to enhance and 
improve public policy and administration of services for children, 
youth, and families. As the only organization devoted solely to 
representing administrators of state and local public child welfare 
agencies, NAPCWA brings an informed view of the problems facing 
families today to the forefront of child welfare policy. DCS is the 
agency responsible for our state's child welfare programs. The 
Department's mission is to empower families and support community 
safety and partnerships to help ensure safety, permanency and wellbeing 
for children in our care. The State of Tennessee is committed to 
protecting the children served in our child welfare system by ensuring 
that medical, mental and behavioral health services are provided in the 
least intrusive manner and in the least restrictive setting that meets 
each child's needs.
Background
    The child welfare system in Tennessee serves over 20,000 children 
and youth at risk of custody each year and has approximately 8100 
children and youth currently in custody. The Department of Children's 
Services has been under intense scrutiny since May 2000, when a civil 
rights class action lawsuit was filed by Children's Rights, Inc., on 
behalf of children who had experienced difficulties within the child 
welfare system. According to the complaint, Tennessee was not 
fulfilling its obligations to children in foster care, as children were 
staying in custody for long lengths of time, being placed in emergency 
shelters or congregate care settings rather than family-like settings, 
experiencing multiple placement moves, and not getting all of their 
healthcare and educational needs met. Additional concerns in the 
lawsuit focused on the inappropriate use of psychotropic medications 
for children in care, inadequate monitoring of psychotropic 
medications, and the possible use of these medications as a means of 
control, punishment or discipline of children or for the convenience of 
staff providing care to foster children.
    A settlement agreement was finalized in the lawsuit in July 2001. 
This agreement became known as the Brian A. Settlement Agreement, as it 
was named after one of the eight foster youth for whom the original 
lawsuit was filed. This settlement established the outcomes to be 
achieved by the State of Tennessee on behalf of children in custody and 
their families. It also mandated the creation of the Technical 
Assistance Committee (TAC) consisting of experts in the child welfare 
field to serve as a resource and monitoring function for the Department 
in the development and implementation of its reform effort. The 
Settlement Agreement also required that Tennessee DCS review all 
policies and procedures surrounding the use of psychotropic medication, 
that DCS implement all recommendations made by TAC, and that the 
Department hire a full-time Medical Director specifically to oversee 
the implementation of policies and procedures concerning the use of 
psychotropic medication for children in DCS custody. I serve in this 
Medical Director position and would like to share with you one child 
welfare agency's progress in the area of psychotropic medication.
First Area of Reform: Evaluation of Current Policies and Practices
    The first phase of reform for Tennessee was to conduct an in depth 
evaluation of current policies and practices regarding psychotropic 
medication. The Department conducted this analysis with the assistance 
of Dr. Christopher Bellonci, an expert child psychiatrist and 
consultant provided by the Child Welfare League of America. Dr. 
Bellonci and I co-facilitated a multidisciplinary workgroup that 
included psychiatrists, psychologists, nurses, and other leadership and 
field staff from the Department of Children's Services, the state 
Department of Mental Health and Developmental Disabilities, provider 
trade organizations, and provider agencies serving children in custody. 
The guiding principles developed by this group included:

      DCS will ensure that psychotropic medications prescribed 
for children in custody are used in combination with other therapeutic 
modalities contained in a multidisciplinary treatment plan.
      DCS will ensure that parents and children are offered an 
opportunity for meaningful participation and input in the decision 
making process related to the possible use of psychotropic medications.
      DCS will ensue that psychotropic medications are properly 
administered and that custodial children receiving the medications are 
properly supervised to ensure consistency and continuity in their care 
and treatment.
      DCS will ensure that the efficacy, safety and side 
effects of psychotropic medications used with children in custody are 
tracked and documented.
      DCS will ensure that psychotropic medications are not 
used as a means of control, punishment or discipline of children or for 
the convenience of the treating facility.
      DCS will prohibit the use of psychotropic medication s on 
a pro re nata (as needed) basis without the prior authorization of the 
DCS Director of Medical and Behavioral Services or his/her designee.
      DCS will ensure that direct-care staff are trained in the 
use, administration, and monitoring of psychotropic medications with 
children.
      DCS will monitor and track the prescribing practices of 
psychotropic medications to include ethnic, gender, age and trends for 
children in DCS care.

    These principles were included in the ``DCS Standards of 
Professional Practice for Serving Children and Families'', which is a 
document outlining the vision of the Department to ensure quality care, 
appropriate service, safety and permanency for children and families in 
Tennessee.
Second Area of Reform: Policy and Practice Development
    These principles also guided the development of five policies 
related to the use of medication, including policies about medication 
administration, emergency and PRN usage of psychotropic medication, 
medication errors and informed consent. The Brian A. Settlement 
Agreement outlined specific practices to follow regarding the process 
of informed consent and psychotropic medications, specifically that 
``whenever possible, parents shall consent to the use of medically 
necessary psychotropic medication.'' When parents are not available or 
their legal rights have been terminated, then DCS regional nurses 
review and provide consent to medically necessary medication. DCS 
developed a statewide network of nurses to monitor healthcare for 
children in custody, including the use of psychotropic medication.
Monitoring Guidelines and Procedures
    In addition to assisting in policy development, Dr. Bellonci 
drafted the ``DCS Medication Monitoring Guidelines'' referenced in his 
testimony, as a tool for DCS case managers to use in monitoring the 
psychotropic medications prescribed for the children in their care. As 
Dr. Bellonci has noted, these guidelines were not meant to define 
prescribing practices but to help inform decision making and oversight 
related to psychotropic medication usage for children in foster care.
    Once the DCS medication policies and monitoring guidelines were 
promulgated and shared with contract providers, DCS required each 
provider agency to complete a ``self-assessment'' of their compliance 
level with every practice mandated in each of the medication policies. 
The Department used these data as a baseline for ongoing monitoring 
that occurs each year by our internal auditors. Those providers who 
were not in compliance were also required to submit corrective action 
plans to be used by DCS for ongoing evaluation and technical 
assistance. In addition to annual site reviews, DCS also conducts 
unannounced site visits to residential facilities by multidisciplinary 
teams consisting of regional and central office DCS personnel. These 
site visits consist of interviews with staff and youth, as well as 
intensive reviews of personnel, training and clinical records to 
determine whether these programs are implementing the protection from 
harm policies (those dealing with psychotropic medication as well as 
restraint and seclusion).
Training
    The Department developed specific training curricula for agency 
staff and contract providers in order to assist with the implementation 
of these protection from harm policies. One training focuses on 
educating DCS staff, providers, and resource parents about policies 
related to psychotropic medication usage. This computer-based training 
utilizes case vignettes, challenge questions, and expert resources to 
spark discussion among individuals serving children. Another training 
curriculum teaches resource parents how to properly administer, store, 
dispose of and monitor medication use for children and youth in their 
homes. These training modules have been shared with the provider 
agencies caring for DCS children in TN, as the Brian A. Settlement 
Agreement suggests that all DCS staff and private agency staff serving 
children in custody should be trained similarly.
Audits
    As part of the ongoing monitoring mandated by the Brian A. 
Settlement Agreement, the Technical Assistance Committee audits a 
sample of case records of children in custody of the state of 
Tennessee. Regarding psychotropic medication, these reviews focus on 
determining how many children are prescribed psychotropic medication, 
the ages and placements of these children, and whether or not 
appropriate informed consent was obtained for the psychotropic 
medications.
    The first case file review conducted by the Federal Monitor was 
completed in 2004 and reviewed data from 2003. This review found that 
approximately 25% of children in custody were prescribed psychotropic 
medications. The next case file audit reviewed data from 2004 and was 
completed in 2005, finding that only 17% of children in the sample were 
prescribed psychotropic medication. This sample was somewhat different 
from the previous year, in that it reviewed children just entering the 
child welfare system who had only been in custody approximately six 
months. The TAC also conducted a review of DCS case files in 2006 
(looking at practice in 2005), which found that 21% of children in 
custody were administered psychotropic medication. Despite some 
fluctuation, the numbers of children prescribed medication has 
declined. The majority of children prescribed psychotropic medication 
each year has been the adolescent population.


----------------------------------------------------------------------------------------------------------------
                                                       2004 n = 106         2005 n = 276         2006 n = 268
----------------------------------------------------------------------------------------------------------------
Case file documents child was administered                        25%                  17%                  21%
 psychotropic medication during review period
----------------------------------------------------------------------------------------------------------------



      Percent of Children in Each Age Range
       Administered Psychotropic Medication                2004                 2005                 2006
----------------------------------------------------------------------------------------------------------------
0-3 years
------------------------------------------------------  0% (0 of 106)------   0% (0 of 81)------   0% (0 of 69)-
----------------------------------------------------------------------------------------------------------------
4-6 years                                               11% (5 of 47)         9% (3 of 34)         3% (1 of 30)
----------------------------------------------------------------------------------------------------------------
7-9 years                                              25% (15 of 59)         3% (1 of 29)        32% (6 of 19)
----------------------------------------------------------------------------------------------------------------
10-12 years                                            33% (18 of 55)        24% (8 of 33)       37% (11 of 30)
----------------------------------------------------------------------------------------------------------------
13-18 years                                           40% (68 of 171)       34% (34 of 99)      33% (34 of 120)
----------------------------------------------------------------------------------------------------------------



      Informed Consent for Administration of
         Psychotropic Medication Received                  2004                 2005                 2006
----------------------------------------------------------------------------------------------------------------
Informed Consent given                                            69%                  60%                  70%
----------------------------------------------------------------------------------------------------------------
No informed consent                                               33%                  40%                  30%
----------------------------------------------------------------------------------------------------------------


Third Area of Reform: Tracking Data Trends
    In order to provide additional expertise, consultation, review and 
oversight with regard to psychotropic medication, TN DCS employed a 
Child and Adolescent Psychiatrist, Deborah Gatlin, M.D. Dr. Gatlin has 
established a Pharmacy and Therapeutics Committee, whose membership 
includes psychiatrists and pharmacists with special expertise related 
to child and adolescent care. This group reviews medication practice 
across the state and advises on issues related to mental health 
treatment for children in custody. Our various review initiatives 
identified children taking as many as eight different psychotropic 
medications. There appeared to be, in some instances, a lack of 
oversight for medication management and drug interactions.
    As a mechanism of tracking psychotropic medication usage for 
children in foster care, DCS worked with TennCare (Tennessee's Medicaid 
program) and TennCare Select (the Managed Care Company serving children 
in custody) to receive paid claims data for children and identified 
psychotropic medications. Blue Cross and Blue Shield provided this 
pharmacy data to the Department, and this information was matched 
against the child welfare database (TNKids) for each month. Summary 
data from January--December 2006 indicates that on average, 19.8% of 
children in DCS custody were prescribed at least one psychotropic 
medication during the calendar year. The providers prescribing the most 
medications to Tennessee's custody children were physicians 
specializing in psychiatry. The classes of drugs prescribed the most 
during 2006 included antipsychotics and stimulants (e.g., Seroquel and 
Adderall). During 2006, three-fourths of the 19.8% of children on 
medication received only one or two psychotropic medications (44.8% and 
31.0%, respectively); 16.4% received three psychotropic medications, 
and less than 1% received four or more psychotropic medications 
concomitantly. A child in the custody of the State of Tennessee who was 
administered medication during 2006 was more likely to be a white male, 
adjudicated dependent and neglected, age 13 years, and prescribed 
approximately two psychotropic medications by a psychiatrist. The 
research division of DCS is currently analyzing the pharmacy claims 
data for the 2007 calendar year, but trends from the second quarter of 
2007 indicate similar numbers of children on psychotropic medications 
(an average of 20.1%). Additionally, 2007 data show that of those 20% 
of youths receiving psychotropic medications, the majority (an average 
of 75%) are prescribed only one or two medications.
Fourth Area of Reform: Updating Monitoring Guidelines and Protocols
    In conjunction with the Pharmacy and Therapeutics Committee, the 
DCS Consulting Psychiatrist, Dr. Gatlin, has formulated updated 
medication monitoring guidelines for use in Tennessee. These 
``Psychotropic Medication Utilization Parameters'' were adapted form 
the original ``DCS Medication Monitoring Guidelines'' as well as the 
Texas Department of State Health Services standards. These parameters 
outline situations in which further review of a foster child's 
medication regimen is warranted. These guidelines do not indicate if 
the treatment is inappropriate, but indicate that further analysis of 
the situation is needed. The new parameters include:

      Four or more psychotropic medications prescribed 
concomitantly
      Two or more psychotropic medications of the same class 
prescribed concomitantly (specifically antidepressants, antipsychotics, 
stimulants, and mood stabilizers)
      Medication dose exceeds the usual recommended dose (the 
Pharmacy and Therapeutics Committee drafted a listing of commonly used 
psychotropic medications used in the treatment of children and 
adolescents, outlining maximum dosages)
      Children under five years of age prescribed psychotropic 
medications

    Cases that fall outside of the DCS medication monitoring guidelines 
are reviewed at several levels. The state of Tennessee is fortunate to 
have regional health units staffed with nurses and psychologists in 
each of the 12 regions of the state. Additionally, in central office, 
we have our consulting child psychiatrist (Dr. Gatlin) as well as a 
pediatric nurse practitioner. Outside of DCS, we have five ``Centers of 
Excellence for Children in State Custody'' that are a partnership with 
the State of Tennessee and academic medical centers and community 
providers. The Centers of Excellence (COEs) were created to serve 
children in and at risk of custody and provide expert guidance for the 
diagnosis and treatment of medical and behavioral health disorders for 
all community providers. The COEs also offer limited direct services 
for the most complex cases of children in and at risk of custody and 
for situations in which service gaps exist.
    While reviews of individual cases that fall outside of these 
medication parameters have been reviewed at numerous levels for some 
time, the DCS child welfare database has now automated these reviews. 
Since August of 2007, when medication information is input into the 
database, a review by the psychiatrist is automatically triggered. An 
e-mail alert is sent to our consulting psychiatrist for further review. 
Dr. Gatlin's reviews of these cases have typically indicated that more 
clinical information is needed to understand the situation, that the 
treatment is within reasonable clinical community standards, that 
consultation with a Child and Adolescent Psychiatrist or Center of 
Excellence is indicated, or the child's case should be transferred from 
the Primary Care Provider (PCP) to a Psychiatrist. The majority of 
cases falling outside the psychotropic medication parameters have 
indicated appropriate care. The updated DCS database also mandates that 
consent information for each psychotropic medication is documented. In 
Tennessee, youths aged 16 years and older have the same legal rights to 
consent to mental health treatment including psychotropic medications 
as adults. The database requires an explanation if a youth is 16 years 
of age or older and was not the person who gave consent for the 
psychotropic medication. Similarly, the Brian A. Settlement Agreement 
mandates that whenever possible, parental consent should be obtained 
for psychotropic medications. If parental rights are not terminated, 
the new data system forces an explanation if the parents did not 
provide the informed consent.
    The updated database also allows for more accurate tracking of 
health information for children in custody, including allergies, 
medical conditions, psychiatric diagnoses, all medications (including 
psychotropic), and documentation of all health services rendered to the 
child (including medical, dental, vision, and mental health). The 
system allows for a summary to be developed, which acts as a ``Health 
Passport'' for the child to ensure that all caregivers and providers 
serving the child have clear information on the child's history and 
current health status. This summary is shared with case managers, 
healthcare providers, placement agencies, and resource parents. This is 
similar to the passport that the state of Texas has developed as a part 
of its STAR Health program.
    DCS is now working on contrasting the pharmacy claims data with the 
data in our child welfare database to ensure that we are adequately 
tracking all children in custody who receive psychotropic medications. 
Additionally, the Pharmacy and Therapeutics Committee continues to act 
in an advisory capacity for this process and will be used to review 
individual providers who have concerning prescribing practices in 
comparison to the drug utilization parameters used in Tennessee.
    We are able to see cases in which children and youth in our custody 
have benefited from the oversight and monitoring processes we have put 
in place. One example is that of a 14 year old boy, in full 
guardianship, with diagnoses of Mild Mental Retardation, Bipolar 
Disorder, Impulse Control Disorder, and Psychotic Disorder. He was 
placed at a residential treatment facility but continued to require 
frequent psychiatric hospitalizations and was prescribed six 
psychotropic medications (two antipsychotics, two mood stabilizers, one 
sedative, and an additional medication for impulse control). When the 
DCS regional nurse reviewed these medications to give consent, she 
contacted our Child and Adolescent Psychiatrist as the medication 
regimen met several of the monitoring triggers. The Psychiatrist was 
concerned about the youth's placement moves and frequent medication 
changes and recommended that his psychiatric care transfer to one of 
our Centers of Excellence. The youth has been taken off several of the 
psychotropic medications, is now placed in a foster home rather than a 
residential facility, and is doing fairly well.
    The State of Tennessee Department of Children's Services has made 
significant progress regarding psychotropic medication practices for 
children in custody. We recognize that there is a high rate of mental 
illness associated with our population and that there is trauma 
associated with entering the foster care system. However, Tennessee is 
working to ensure that children in custody have their mental health 
needs adequately addressed and are prescribed psychotropic medication 
when clinically indicated. In those cases, we want to ensure that 
appropriate informed consent is given and ongoing monitoring occurs. 
Additionally, Tennessee is working diligently to ensure that 
psychotropic medication is not used inappropriately or as a means of 
control, punishment, and discipline of children or for the convenience 
of staff.
    Thank you very much for the opportunity to speak to this important 
issue affecting the children of our country.

                                 

    Chairman MCDERMOTT. Thank you.
    I apologize for making somebody from Tennessee talk that 
fast!
    [Laughter.]
    Dr. LEA. I kept it under 5 minutes.
    [Laughter.]
    Chairman MCDERMOTT. Our next witness is Misty Stenslie, who 
is the Deputy Director for the Foster Care Alumni Association 
of the United States.
    Misty?

         STATEMENT OF MISTY STENSLIE, DEPUTY DIRECTOR,
                 FOSTER CARE ALUMNI OF AMERICA

    Ms. STENSLIE. As one of the twelve million adults in the 
United States who grew up in foster care, the government did 
service as my parents; This Committee, your colleagues in 
Congress, have stood in the places where our mothers and 
fathers belong and we thank you for that.
    We ask you to consider the recommendations that come from 
this panel and, in all of your decisions about foster care, to 
consider them both from a lawmaker's point of view and from a 
mom or dad's point of view, because you really do have that 
responsibility for us.
    So, hearing you say that you are our godfathers took me 
back a little bit, because that's something that I'm still not 
used to. I felt it and I appreciate it.
    I am the deputy director of Foster Care Alumni of America. 
We're a national association that brings together those of us 
who share the foster care experience to be that extended family 
network for each other. Thank you.
    We also work with other social workers, foster parents, 
other professionals, in order to improve foster care practice 
and policy for the ones who come after us because those really 
are our younger brothers and sisters having shared the same 
parents, the government.
    In addition to having grown up in foster care, I am a 
masters-level social worker and I have worked in child welfare 
for the last 19 years. I am also proud to be the foster mother 
to three young people who came to me in their teen-age years 
and are now in their middle twenties, 22, 23, and 26. So the 
thing I know the most about in the world is foster care, and on 
this topic of the use of psychotropic medications and anything 
else in the foster care system or child welfare system. There's 
just not going to be a simple answer and I think you already 
know that.
    As the community of alumni of the foster care system, we do 
ask you to remember to wear your parent hat too when you're 
making these decisions. My own childhood, I spent about 12 
years total living in 30 different placements. I lived in group 
homes and kinship care and foster homes and residential 
treatment and juvenile correction facilities, just about at 
least one of every kind of placement that's available.
    Through those unstable years, I had probably a couple of 
hundred people who were responsible for me, and I still left 
foster care at 18, even with no family, even with a couple 
hundred people who looked out for me at least for a little 
while. During my time in care I had a long list of diagnoses, 
including post-traumatic stress disorder, oppositional defiant 
disorder, conduct disorder, sleep disorder, mood disorder. I 
got to have a lot of those kinds of things too.
    Due to the instability of my living situation, it seemed 
like sometimes the only choice the professionals in my life 
could see that they had, because they couldn't fix my life, 
would be that they would prescribe medication. So, over the 
years, I was on more medications than I can count. Most of the 
time that was without me knowing what they were for, how I 
should expect to feel different, what side effects to watch out 
for, what the plan was, whether I was supposed to take them 
forever, and whether I was supposed to just take them this 
week.
    So it wasn't until I was a senior in high school and about 
my 30th placement that I even found out that I had the right to 
question or challenge what all those diagnoses were and what 
all that medication was about. My very last foster home 
dutifully gave me my handful of pills every night for the first 
week or two I was there. Then, one night, the foster dad said 
to me, ``What are all these pills for?'' I went, ``I don't 
really know. I know they're supposed to help me sleep.'' He 
said, ``Why don't you sleep?'' I said, ``I get really anxious 
at night and I have a really hard time getting any rest.'' So, 
he said, ``Let's stay up. Let's figure out what happens.'' So, 
we made cocoa.
    We sat up playing cards half of the night, and every time 
there was a bump in the night, I had my typical anxious 
response, because I really did have post traumatic stress 
disorder. So every time that anxious response came up, he would 
explain to me what the noise was. He would say it's the water 
softener regenerating. It's the furnace kicking on. It's the 
dog upstairs getting a drink of water and explaining these 
things to me that I had no way of knowing myself.
    The other thing that those foster parents did was they 
acknowledged that I was actually really smart. I was really 
smart to have figured out that if I never went to sleep too 
deeply, I was less likely to be hurt in the house where I came 
from and that it wasn't a disorder in me that I had so much 
trouble with sleeping. It was a disorder in my life and that I 
really responded to my life's realities in the best way I could 
to keep myself safe.
    So, as you'll see in my written testimony, a lot more 
information, both about what I have to say and about what we 
hear from other alumni of the foster care system all around the 
country, but a few things I want to make sure that you know, is 
it's a really common thing to hear from our alumni members, our 
brothers and sisters from foster care around the country, that 
they received diagnoses and medications in response to their 
disordered lives and we do know about foster children is that 
many of us do actually have psychiatric needs due to the trauma 
of abuse and neglect and the trauma of living in placement away 
from everything that's familiar and the trauma of growing up 
with no family. We also know that young people in foster care 
are coming from families having histories of psychiatric 
problems, so whether it's a result of the trauma or a matter of 
the genetic predisposition or a collision of those factors, we 
do know that children in foster care often have needs that must 
be addressed. Sometimes, medication is the very best way to do 
that, but, what we hear so much from people who actually have 
lived the experiences, the medications are way too often given 
as a substitute when we can't give kids what they really need, 
and that's love, stability, power, hope; someone who sees them; 
somebody who hears them; somebody who will stick with them.
    So I have a couple of specific recommendations I want you 
to hear. First is that consistency is the key to adequate and 
appropriate mental healthcare. We need stable placements. We 
need people who love us and who will stand with us and we need 
a medical home. I don't know why it's taken so long for this 
country to catch on. I don't know anybody who thinks it's a bad 
idea.
    Why are we having such a hard time making that up?
    We need a medical home. Those of us from foster care, we 
don't typically have things like photo albums and family scrap 
books. Sometimes the closest thing we have to that is whatever 
official records exist about us, so why don't we put them all 
in one place?
    The second thing I want to make sure you hear is medication 
should not be the first option considered and should never be 
the only option considered; pills can't change what happened to 
us. We need access to well-trained and supportive professionals 
who provide culturally competent services. We need ongoing 
access to healthcare even after we've been adopted, reunified, 
and especially after we've emancipated.
    We need to know about our own lives. We need access to our 
records, to information, and we need the power to seek or 
refuse the treatment that we get based on what we know and the 
support that we have. So, again, on behalf of all of us from 
foster care, thank you for standing where our parents belong. 
It really does matter.
    Thank you.
    [The prepared statement of Misty Stenslie follows:]
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    Chairman MCDERMOTT. Thank you for that testimony.
    Laurel Leslie is a physician who is at Tufts New England 
Medical Center Institute for Clinical Research And Health 
Policy. Welcome, Dr. Leslie.
    Dr. LESLIE. Thank you.

 STATEMENT OF LAUREL K. LESLIE, M.D., DEVELOPMENTAL-BEHAVIORAL 
 PEDIATRICIAN, CENTER ON CHILD AND FAMILY OUTCOMES, TUFTS-NEW 
  ENGLAND MEDICAL CENTER INSTITUTE FOR CLINICAL RESEARCH AND 
                     HEALTH POLICY STUDIES

    Dr. LESLIE. Mr. Chairman, thank you very much for the 
opportunity to testify at this hearing on the healthcare needs 
of children in foster care. As you mentioned, my name is Laurel 
Leslie, and today I am proud to speak on behalf of the American 
Academy of Pediatrics and its Task Force on Foster Care of 
which I am a member.
    The academy recognizes that psychotropic medication can be 
an appropriate and effective part of a treatment plan for some 
children in foster care. It's critical, however, that these 
children receive thorough evaluations and comprehensive 
treatments that address all aspects of their physical, mental, 
developmental/educational and behavioral health, and that any 
treatment is evidenced based where evidence is available.
    Congress should support and fund quality, comprehensive 
care for all aspects of health and well-being of children in 
foster care, including their mental health. The few research 
studies available show rates of psychotropic medication use 
ranging from 13 to 50 percent among children in foster care, 
which is much higher than the approximately 4 percent rate of 
youth in the general population.
    A report prepared by the government Accountability Office 
found that 15 states have identified the overuse of 
psychotropic medications as one of the leading issues facing 
their child welfare system in the upcoming years. Soon-to-be 
published data from Safe Place, which is in Philadelphia, also 
demonstrated in the Medicaid program children in foster care 
who have autism were more likely to use three or more 
psychotropic medications than children who qualified through 
the Supplemental Security Income program. These data show 
alarming interstate variation in prescription pattern rates of 
psychotropic medication used for children in foster care.
    It's difficult to know from these preliminary data or the 
multitude of reports that are emerging in the media whether the 
use of these medications is appropriate, although at the very 
least, the use of a combination of three or more medications is 
controversial. Clearly, medication can be helpful for some 
children, but with the increasing use of these medications 
among the population in general there comes the added 
responsibility to ensure that children have an access to an 
array of treatment strategies.
    Furthermore, the failure to coordinate and provide 
continuity in services and the absence of clear guidelines and 
accountability to ensure that treatment decisions are in a 
child's best interest create a greater risk that medications 
will be prescribed to control children's behavior in the 
absence of individualized service plans that offer these 
vulnerable children their best chance for success. These 
critical questions don't have simple answers and addressing 
them will require sustained collaboration between healthcare 
and child welfare professionals as well as the funding streams 
to support this collaboration.
    Allow me to share with you three stories from my own 
experience as a clinician that demonstrate where I think we as 
a system have failed or succeeded in addressing appropriately 
the mental health needs of children in foster care.
    Four-year-old Carrie came to see me because of violent 
temper tantrums. She had broken windows, doors, and 
televisions, in different foster-care homes. Since she was so 
difficult to control, she had already been through multiple 
placements.
    Working in close collaboration with her foster parents, we 
were able to wean her down to one psychotropic medication and 
we educated her foster parents in intensive behavioral 
interventions that they could put in place to help shape 
Carrie's behavior. However, when Carrie was placed for adoption 
in a neighboring county, neither her foster parents nor I were 
given the opportunity to share what we had learned with the 
adoptive parents or with any prospective medical or mental 
health provider who might be seeing her.
    Her behavior returned with a vengeance, and because her 
prospective parents did not know how to cope with her 
behavioral problems, that adoption fell apart within 2 weeks. 
She was placed with yet another foster family, because the 
family she had previously been with had already filled their 
beds.
    When Jenelle aged out of the foster care system, like 
Misty, she had had 22 mental health diagnoses and was on four 
different medications. She had no idea why any of the drugs 
were being given to her and she stopped them all immediately--a 
very dangerous move to make, considering that some psychotropic 
medications can have serious side effects if stopped suddenly. 
Jenelle met with me after aging out of the foster care system 
and asked me why she'd been on so many medications and why no 
one had ever taken the time to educate her about her own health 
or how to care for her healthcare needs. I did not have a good 
answer for her.
    Nine year old Jacob had been in foster care for several 
years while his mother was in jail because of drug use. He had 
hearing loss, ADHD, a reading disability, and needed medical, 
mental health, and school-based services that were coordinated 
and we were able to put together. When his mother was released 
from jail I was able to transition Jacob's care and meet 
together with Jacob, his mother, and the foster parents.
    Interestingly to me, Jacob's mother had received no help 
with parenting while she was in jail and shared with me her own 
inability to set limits or discipline, as she had been a victim 
of child abuse herself, an all-too-common story. We worked with 
her to learn parenting skills, find mechanisms of coping with 
stress that did not include using substances, and take over the 
many care coordination needs of her son. By improving her 
parenting skills, we were able to help her better manage her 
child's ADHD symptoms.
    Mr. Chairman, in conclusion, our Nation has a moral and a 
legal responsibility to provide better care to these vulnerable 
children. The Academy has identified priorities in healthcare 
for children in foster care that include the following:
    One, all children, including children in foster care, 
should have a medical home.
    Two, comprehensive physical development and mental health 
assessment should be given to every child within thirty days of 
entering State custody. Mental health assessments should also 
be conducted on any child for whom psychotropic medications are 
being considered.
    Three, care coordination must be a priority. The Academy 
strongly supports section 421 of H.R. 5466, the Invest In KIDS 
Act, which requires states to improve care coordination for 
children in foster care. We were pleased to work closely with 
you, Mr. Chairman, and your staff, to develop this section and 
hope it can be passed expeditiously.
    Four, if children in State custody--am I out of time?
    Chairman MCDERMOTT. You already have been over.
    Dr. LESLIE. Okay. We feel an established protocol should be 
set up and there are details related to that in my written 
testimony.
    Thank you again for the opportunity to testify, and I 
stand, or sit, ready to answer any questions you may have.
    [The prepared statement of Laurel K. Leslie, M.D., 
follows:]

    Prepared Statement of Laurel K. Leslie, Developmental-Behavioral
  Pediatrician, Center on Child and Family Outcomes, Tufts-New England
   Medical Center Institute for Clinical Research and Health Policy 
                                Studies

    Mr. Chairman, I am grateful for the opportunity to testify at this 
important hearing on serving the healthcare needs of children in foster 
care. My name is Laurel Leslie, MD, MPH, FAAP, and I am proud to speak 
on behalf of the American Academy of Pediatrics (AAP) and its Task 
Force on Foster Care, of which I am a member. I am an Associate 
Professor of Medicine and Pediatrics at Tufts Medical Center, a 
practicing pediatrician, and a researcher on children's mental health 
needs. A particular focus of my clinical work and research has been 
children in foster care.
    The American Academy of Pediatrics has a deep and abiding interest 
in the healthcare provided to children in the foster care system. The 
Academy has published a handbook on the care of foster children, 
Fostering Health, as well as numerous policy statements, clinical 
guidelines, and studies regarding child abuse, neglect, foster care, 
and family support. In addition, the Academy has recognized the unique 
challenges faced by children in foster care by designating the special 
healthcare needs of children in foster care as one of the five issues 
highlighted in its Strategic Plan for 2007-2008 and establishing a Task 
Force on Foster Care that will craft a multi-pronged strategy for the 
AAP to improve the health of children in foster care.
    The AAP recognizes that psychotropic medication can be an 
appropriate and effective part of a treatment plan for some children in 
foster care. It is critical, however, that these children receive 
thorough evaluations and comprehensive treatment that address all 
aspects of the child's physical, mental, developmental/education, and 
behavioral health, and that are evidence-based where evidence is 
available. Congress should support and fund quality, comprehensive care 
for all aspects of the health and well-being of children in foster 
care, including their mental health.
Our Nation Must Address the Health Needs of Children in Foster Care
    On any given day, approximately 540,000 children are in foster 
care, most of whom have been placed there as a result of abuse or 
neglect at home. Several decades of research has firmly established 
that the healthcare needs of children in out-of-home care far exceed 
those of other children living in poverty. Compared with children from 
the same socioeconomic background, children in foster care have much 
higher rates of birth defects, chronic physical disabilities, 
developmental delays, serious emotional and behavioral problems, and 
poor school achievement.\1\ In fact, nearly half of all children in 
foster care have chronic medical problems,2,3,4,5 about half 
of children ages 0-5 years in foster care have developmental 
delays,6,7,8,9,10,11 and up to 80% of all children in foster 
care have serious emotional problems.12,13,14,15,16,17,18,19
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    \1\ Committee on Early Childhood, Adoption and Dependent Care. 
Healthcare of Young Children in Foster Care. Pediatrics, Vol. 109, No. 
3, March 2002.
    \2\ US General Accounting Office. Foster care: health needs of many 
young children are unknown and unmet. Washington, DC: (GAO/HEHS-95-
114); 1995.
    \3\ Takayama JI, Wolfe E, Coulter KP. Relationship between reason 
for placement and medical findings among children in foster care. 
Pediatrics. 1998;101(2):201-207.
    \4\ Halfon N, Mendonca A, Berkowitz G. Health status of children in 
foster care. The experience of the Center for the Vulnerable Child. 
Archives of Pediatrics & Adolescent Medicine. 1995;149(4):386-392.
    \5\ Simms MD. The foster care clinic: a community program to 
identify treatment needs of children in foster care. Journal of 
Developmental & Behavioral Pediatrics. 1989;10(3):121-128.
    \6\ Chernoff R, Combs-Orme T, Risley-Curtiss C, Heisler A. 
Assessing the health status of children entering foster care. 
Pediatrics 1994;93(4):594-601.
    \7\ Hochstadt NJ, Jaudes PK, Zimo DA, Schachter J. The medical and 
psychosocial needs of children entering foster care. Child Abuse & 
Neglect 1987;11(1):53-62.
    \8\ Horwitz SM, Simms MD, Farrington R. Impact of developmental 
problems on young children's exits from foster care. Developmental and 
Behavioral Pediatrics 1994;15(2):105-10.
    \9\ Leslie LK, Gordon J, Ganger W, Gist K. Developmental delay in 
young children in child welfare by initial placement type. Infant 
Mental Health Journal 2002;23(5):496-516.
    \10\ Swire MR, Kavaler F. The health status of foster children. 
Child Welfare 1977;56(10):635-53.
    \11\ Szilagyi M. The pediatrician and the child in foster care. 
Pediatrics in Review 1998;19(2):39-50.
    \12\ Halfon N, Mendonca A, Berkowitz G. Health status of children 
in foster care. The experience of the Center for the Vulnerable Child. 
Archives of Pediatrics & Adolescent Medicine. 1995;149(4):386-392.
    \13\ Landsverk JA, Garland AF, Leslie LK. Mental health services 
for children reported to child protective services. Vol 2. Thousand 
Oaks: Sage Publications; 2002.
    \14\ Glisson C. The effects of services coordination teams on 
outcomes for children in state custody. Adminstration in Social Work. 
1994;18:1-23.
    \15\ Trupin EW, Tarico VS, Low BP, Jemelka R, McClellan J. Children 
on child protective service caseloads: Prevalence and nature of serious 
emotional disturbance. Child Abuse & Neglect. 1993;17(3):345-355.
    \16\ Clausen JM, Landsverk J, Ganger W, Chadwick D, Litrownik A. 
Mental health problems of children in foster care. Journal of Child & 
Family Studies. 1998;7(3):283-296.
    \17\ Urquiza AJ, Wirtz SJ, Peterson MS, Singer VA. Screening and 
evaluating abused and neglected children entering protective custody. 
Child Welfare. Mar-Apr 1994;73(2):155-171.
    \18\ Garland AF, Hough RL, Landsverk JA, et al. Racial and ethnic 
variations in mental healthcare utilization among children in foster 
care. Children's Services: Social Policy, Research, & Practice. 
2000;3(3):133-146.
    \19\ Pecora P, Kessler R, Williams J, et al. Improving family 
foster care: findings from the Northwest Foster Care Alumni Study. 
Seattle, WA: Casey Family Programs, available at http://www.casey.org; 
2005.
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     Typically, their history of abuse and neglect and the accompanying 
health, developmental and behavioral problems they experience have an 
ongoing impact on all aspects of their lives, even long after these 
children and adolescents have left the foster care system.\20\ For 
example, the 2005 Northwest Foster Care Alumni Study reported that 
alumni from foster care were six times more likely to suffer post-
traumatic stress disorder, four times more likely to turn to substance 
abuse, twice as likely to experience depression, and more than two-and-
a-half times more likely to be diagnosed with an anxiety disorder.\21\ 
(Figure 1) Other examples of poor health outcomes in adulthood that 
have been linked to childhood abuse and neglect include heart disease, 
tobacco use, substance abuse, sexually transmitted diseases, unintended 
pregnancy, delinquency, obesity, and work absenteeism.\22\
---------------------------------------------------------------------------
    \20\ Centers for Disease Control and Prevention. Adverse Childhood 
Experiences (ACE) study. http://www.cdc.gov/od/oc/media/pressrel/
r980514.htm.
    \21\ Ibid.
    \22\ Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of 
childhood abuse and household dysfunction to many of the leading causes 
of death in adults. Am J Prev Med. 1998; 14:245-258.
---------------------------------------------------------------------------
    The healthcare needs of children in foster care are often under-
identified and undertreated, despite the overwhelming evidence of need 
from research. Stark evidence that children are not receiving timely 
services has come from a range of studies, from the 1995 Government 
Accountability Office (GAO) report demonstrating that 1/3 of children 
had healthcare needs that remained unaddressed while in out-of-home 
care, to the analysis of the National Survey of Child & Adolescent 
Well-Being documenting that only a quarter of the children with 
behavioral problems in foster care received mental health services 
within a one-year follow-up period.\23\
---------------------------------------------------------------------------
    \23\ Burns BJ, Phillips SD, Wagner RH, et al. Mental health need 
and access to mental health services by youths involved with child 
welfare: a national survey. Journal of the American Academy of Child 
and Adolescent Psychiatry. 2004;43(8):960-970.
---------------------------------------------------------------------------
    Children in foster care are at risk for having inadequate 
healthcare provided to them. Most children enter foster care under 
precipitous and adversarial conditions; little may be known about their 
medical history and their parents may be ambivalent about partnering 
with an investigative case worker to address their child's well-
being.\24\ If medical information is obtained, it may not be 
transmitted to subsequent caseworkers or foster parents who bring a 
child to see a clinician. As a result, physicians find themselves 
trying to identify and treat conditions without access to the child's 
medical history. Appropriate treatments may be delayed or clinicians 
may need to order otherwise unnecessary laboratory work-ups or 
referrals to subspecialists.
---------------------------------------------------------------------------
    \24\ Leslie LK, Kelleher KJ, Burns BJ, Landsverk J, Rolls JA. 
Foster care and Medicaid managed care. Child Welfare 2003;82(3):367-92.
---------------------------------------------------------------------------
    Despite a bewildering number of adults participating in these 
children's lives (e.g. investigative case workers, social workers, 
birthparents and/or foster parents, primary care clinicians, 
specialists, school personnel, judges, lawyers, and court-appointed 
child advocates), they often lack a single, clearly designated 
individual to monitor their health-related needs and care. Because 
foster parents have no legal authority to make medical decisions, they 
are frequently not informed regarding the outcomes of the child's 
physical and mental health assessments, including the decision to 
prescribe medication.
    Many children experience multiple changes during their episode in 
foster care, with more than 25% experiencing three or more placement 
changes per year.\25\ Each placement change results in a change in 
caregiver, and possibly a change in social worker and any involved 
healthcare providers, thus increasing the potential for an uninformed 
diagnosis, poor communication and coordination of health-related needs 
and inconsistent, duplicative delivery of care.
---------------------------------------------------------------------------
    \25\ Institute for Research on Women and Families. Health services 
for children in foster care. Sacramento, CA: California State 
University, 1998.
---------------------------------------------------------------------------
    Policymakers may find it difficult to reconcile these statistics 
regarding unmet need with other data on healthcare financing and 
utilization among children in foster care. Mental health service use by 
children in foster care is 8-11 times greater than that experienced by 
other low-income and generally high-risk children in the Medicaid 
program.26,27 Children in foster care account for 25-41% of 
expenditures within the Medicaid program despite representing less than 
3% of all enrollees.28,29 The answer to this apparent 
contradiction lies in recent data which have shown that up to 90% of 
these costs may be accounted for by 10% of the 
children.30,31 The services are being shifted to the back 
end of the system to children living in residential treatment, group 
homes, and psychiatric facilities. A small number of children are 
receiving intensive, expensive services because the system has 
neglected them until their needs became catastrophic. This is 
ultimately a failure to screen adequately and provide services to the 
overwhelming majority of children who would be excellent candidates for 
treatment and would likely respond to more modest levels of treatment 
if such services were provided at the earliest possible time.
---------------------------------------------------------------------------
    \26\ Harman JS, Childs GE, Kelleher KJ. Mental healthcare 
utilization and expenditures by children in foster care. [see 
comments]. Archives of Pediatrics & Adolescent Medicine. 
2000;154(11):1114-1117.
    \27\ Halfon N, Berkowitz G, Klee L. Mental health service 
utilization by children in foster care in California. Pediatrics. 
1992;89(6 Pt 2):1238-1244.
    \28\ Ibid.
    \29\ Takayama JI, Bergman AB, Connell FA. Children in foster care 
in the state of Washington. Healthcare utilization and expenditures. 
JAMA. 1994;271(23):1850-1855.
    \30\ Ibid.
    \31\ Rubin DM, Alessandrini EA, Feudtner C, Mandell D, Localio AR, 
Hadley T. Placement stability and mental health costs for children in 
foster care. Pediatrics. 2004;113(5):1336-1341.
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Improvements Are Happening, But They Bring New Challenges
    Although the landmark Adoption and Safe Families Act of 1997 is 
rightly heralded for its focus on improving pathways to permanency and 
adoption for children in foster care, a less discussed but equally 
important mandate of that legislation was that states focus on the 
well-being of children under their care. This spurred the development 
of more coordinated approaches to providing healthcare to children in 
the child welfare system. The last decade has seen the emergence of 
different models of care, from healthcare and mental health 
professionals inserted into child welfare units to screen adequately 
and provide oversight to the healthcare needs of children, to 
specialized health centers that provide screening services to all 
children entering out-of-home care and timely follow-up to children, 
particularly during periods of placement change. These units have been 
responsive to guidelines published by the American Academy of 
Pediatrics, the American Academy of Child and Adolescent Psychiatry, 
and the Child Welfare League of America to provide the assessment and 
referrals necessary to meet the goals for timely access to appropriate 
care. Specialized health programs have also been demonstrated to 
improve referral of children to treatment services.\32\
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    \32\ Horwitz SM, Owens P, Simms MD. Specialized assessments for 
children in foster care. Pediatrics. 2000;106(1 Pt 1):59-66.
---------------------------------------------------------------------------
     As we have begun to achieve some success in improving access to 
care, new challenges have emerged. One that has risen to national 
attention recently has been the concern for the overuse of psychotropic 
medications among our nation's youth in general, with a potentially 
disproportionate increase among children in foster care. The few 
research studies available show rates of psychotropic medication use 
ranging from 13-50% among children in foster 
care,33,34,35,36,37,38,39 compared with approximately 4% in 
youth in the general population.\40\ In fact, a report prepared by the 
Government Accountability Office found that 15 states identified the 
overuse of psychotropic medications as one of the leading issues facing 
their child welfare systems in the next few years.\41\ Recently 
published data from Texas suggests that the use of multiple medications 
concurrently is occurring at high rates among children in foster 
care.\42\ Soon-to-be-published data from Safe Place also demonstrates 
that in the Medicaid program, children in foster care with autism were 
much more likely to use three or more psychotropic medications than 
children who qualified through the Supplemental Security Income 
program.\43\ Those data have shown alarming interstate variation in the 
prescription patterns of psychotropic medications for children in 
foster care across our nation.
---------------------------------------------------------------------------
    \33\ Ferguson DG, Glesener DC, Raschick M. Psychotropic drug use 
with European American and American Indian children in foster care. J 
Child Adolesc Psychopharmacol. 2006;16(4):474-481.
    \34\ Zima BT, Bussing R, Crecelius G M, Kaufman A, Belin TR. 
Psychotropic medication treatment patterns among school-aged children 
in foster care. J Child Adolesc Psychopharmacol. 1999;9(3):135-47.
    \35\ McMillen JC, Scott LD, Zima BT, Ollie MT, Munson MR, 
Spitznagel E. Use of mental health services among older youths in 
foster care. Psychiatr Ser. 2004;55(7):811-817.
    \36\ Breland-Noble AM, Elbogen EB, Farmer EM, Dubs MS, Wagner HR, 
Burns BJ. Use of psychotropic medications by youths in therapeutic 
foster care and group homes. Psychiatr Serv. 2004;55(6):706-708.
    \37\ Zito JM, Safer DJ, Sai D et al. Psychotropic medication 
patterns among youth in foster care. Pediatr. 2008;121(1):e157-e163.
    \38\ Raghavan R, Zima BT, Andersen RM, Leibowitz AA, Schuster MA, 
Landsverk J. Psychotropic medication use in a national probability 
sample of children in the child welfare system. J Child Adolesc 
Psychopharmacol. 2005;15(1):97-106.
    \39\ Zima BT, Bussing R, Crecelius GM, Kaufman A, Belin TR. 
Psychotropic medication use among children in foster care: relationship 
to severe psychiatric disorders. Am J Public Health. 1999;89(11):1732-
5.
    \40\ Olfson M, Marcus SC, Weissman MM, Jensen PS. National trends 
in the use of psychotropic medications by children. J Am Acad Child 
Adolesc Psychiatry. 2002;41(5):514-21.
    \41\ US Government Accountability Office. Child Welfare: Improving 
Social Service Program, Training, and Technical Assistance Information 
Would Help Address Long-standing Service-Level and Workforce 
Challenges. Washington, DC: US GAO; 2006.
    \42\ Zito JM, Safer DJ, Sai D et al. Psychotropic medication 
patterns among youth in foster care. Pediatrics 2008;121(1):e157-e163.
    \43\ David Rubin, MD, MPH, FAAP, personal communication, April 
2008.
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    It is difficult to know from these preliminary analyses or the 
multitude of reports that are emerging in the media whether the use of 
these medications by children in foster care is appropriate, although 
at the very least the use of combinations of three or more medications 
remains controversial. Clearly, medication can be helpful to some 
children, but with the increasing use of these medications among 
children in general, there comes the added responsibility to ensure 
that children have access to an array of treatment strategies, from 
medication to community-based services that may augment or replace the 
need for medications in many circumstances. Furthermore, the failure to 
coordinate and provide continuity in services and the absence of clear 
guidelines and accountability to ensure that treatment decisions are in 
the child's best interest, create a greater risk that medications will 
be prescribed to control children's behaviors in the absence of 
individualized service plans that might offer the best chance for 
success. These critical questions do not have simple answers, and, 
addressing them will require sustained collaboration between healthcare 
and child welfare professionals, as well as the funding streams to 
support such collaboration.
Children in Foster Care Must Have a Medical Home
     Beginning in the 1960s, the American Academy of Pediatrics 
pioneered the concept of the ``medical home,'' which is defined as 
``accessible, continuous, comprehensive, family centered, coordinated, 
compassionate, and culturally effective.'' \44\ In a medical home, the 
physician should be known to the child and family and should be able to 
develop a partnership of mutual responsibility and trust with them. In 
the case of children in foster care, a medical home can provide a 
critical source of stability and continuity in a child's otherwise 
chaotic life. The medical home's efforts should include the following:
---------------------------------------------------------------------------
    \44\ American Academy of Pediatrics Medical Home Initiatives for 
Children With Special Needs Project Advisory Committee. The Medical 
Home. Pediatrics, Vol. 110 No. 1 July 2002.

      Obtaining health records. Too many children in state care 
arrive in a physician's office without any medical history or 
documentation.
      Obtaining educational records. Educational records, 
including an Individualized Education Plan, can contain critical 
information about the child's care, development, and physical and 
mental health needs and current service use.
      Attempting to include the birth parent or legal guardian. 
If possible, close family members should be part of discussions and can 
often provide at least portions of health history, family history and 
consent for use of medication.
      Communicating with the child's caseworker, who may have 
access to information about the child's health and well-being.
      Obtaining any health history available from the foster 
parent.
      Ruling out medical issues that may contribute to the 
behaviors of concern (e.g. hearing loss).
      If appropriate, making a mental health referral to a 
qualified mental health provider. The medical home should communicate 
with the mental health provider. If psychotropic medication is to be 
prescribed, it should ideally be done by a child psychiatrist, 
psychiatric nurse practitioner, a developmental/behavioral 
pediatrician, or a highly skilled and knowledgeable pediatrician with 
access to mental health consultation.
      Following good medical practice in medication management. 
Any clinician prescribing psychotropic medications for children in 
foster care should exercise good clinical judgment and follow evidence-
based guidelines, including recommendations for both psychotherapeutic 
and psychopharmacological treatment.
      Obtaining assent from the child or teen who has been 
well-informed about the medication. Too many children in foster care 
have no idea what their diagnoses are or why they are taking 
medication.
      Detailed practice parameters are available through the 
Academy publication, Fostering Health.\45\
---------------------------------------------------------------------------
    \45\ American Academy of Pediatrics District II Task Force on 
Healthcare for Children in Foster Care. Fostering Health: Healthcare 
for Children and Adolescents in Foster Care. 2nd Edition. American 
Academy of Pediatrics, 2005.

    Experience has taught us that a medical home can play a critical 
role in the lives of children in foster care. Allow me to share three 
stories with you from my own experience as a clinician that demonstrate 
where we as a system have failed or succeeded in addressing 
---------------------------------------------------------------------------
appropriately the mental health needs of children in foster care:

     Four-year-old Carrie* first came to see me because of 
violent tantrums. She had broken windows, doors, and televisions in 
previous foster homes. Because she was so difficult to control, she had 
already been through several foster care placements. Working in close 
cooperation with her foster parents, we were able to wean Carrie down 
to one psychotropic medication and educate her foster parents in 
intensive behavioral interventions to help shape Carrie's behavior. 
However, when Carrie was placed for adoption in a neighboring county, 
neither her foster parents nor I were given the opportunity to share 
what we had learned with her adoptive parents or her pediatrician or 
mental health clinician. Her behaviors returned with a vengeance and, 
because her prospective parents did not know how to cope with them, the 
adoption fell apart within two weeks. Carrie was then placed with yet 
another foster family.
     When Janelle*  aged out of the foster care system, she had 
22 mental health diagnoses and was on four different medications. She 
had no idea what any of the drugs were for and stopped all of them--a 
dangerous move, considering that some psychotropic medications can have 
serious side effects if stopped suddenly. Janelle met with me after 
aging out of the foster care system and asked me why she had been on so 
many medications and why no one had ever taken the time to educate her 
about her own health and how to care for her health needs. I did not 
have a good answer for her.
---------------------------------------------------------------------------
     *Not the child's real name.
---------------------------------------------------------------------------
     Nine-year old Jacob* had been in foster care for several 
years while his mother was in jail because of drug use. He had hearing 
loss, Attention Deficit Hyperactivity Disorder, and a reading 
disability and needed medical, mental health, and school-based services 
which we had been able to put in place. When his mother was released 
from jail, I was able to transition Jacob's care and meet together with 
Jacob, his mother, and foster parents. Interestingly, Jacob's mother 
had received no help with parenting while in jail, and shared with me 
her own inability to set limits or discipline as she herself had been a 
victim of child abuse, an all-too-common story. We worked with her to 
learn parenting skills, find mechanisms of coping with stress that did 
not include substance use, and take over care coordination of the many 
needs of her son. By improving her parenting skills, we were able to 
help her better help her son to manage his ADHD symptoms.
---------------------------------------------------------------------------
     *Not the child's real name.

Recommendations
    Our nation has a moral and legal responsibility to provide better 
care to these most vulnerable children. We must ensure that, in 
removing them from their homes, we improve the health and well-being of 
foster children and do not further compound their hardship. While the 
AAP Task Force on Foster Care will issue additional recommendations in 
the future, the American Academy of Pediatrics has identified 
priorities in healthcare for children in foster care that include the 
following:

Comprehensive Care for Children in Foster Care
     All children, including children in foster care, should 
have a medical home that is accessible, continuous, comprehensive, 
family centered, coordinated, compassionate, and culturally 
effective.\46\ For children in foster care, a medical home can provide 
a crucial source of stability, continuity of care, and information.\47\
---------------------------------------------------------------------------
    \46\ Medical Home Initiatives for Children With Special Needs 
Project Advisory Committee. The Medical Home. Pediatrics, Vol. 110, No. 
1, July 2002.
    \47\ American Academy of Pediatrics. Fostering Health: Healthcare 
for Children and Adolescents in Foster Care. 2nd edition. American 
Academy of Pediatrics, 2005.
---------------------------------------------------------------------------
     Comprehensive physical, developmental, and mental health 
assessments should be given to every child within 30 days of entering 
state custody.\48\ Mental health assessments should also be conducted 
on any child for whom psychotropic medications are being 
considered.\49\
---------------------------------------------------------------------------
    \48\ American Academy of Pediatrics. Committee on Early Childhood, 
Adoption, and Dependent Care. Healthcare of young children in foster 
care. Pediatrics 2002;109:536-41.
    \49\ New York State, Office of Children and Family Services. The 
use of psychiatric medications for children and youth in placement; 
authority to consent to medical care. 2002. Available at http://
ocfs.state.ny.us/main/sppd/health_services/manual.asp
---------------------------------------------------------------------------
     Care coordination must be a priority. The Academy strongly 
supports Section 421 of H.R. 5466, the Invest in KIDS Act, which 
requires states to improve care coordination for children in foster 
care. We were pleased to work closely with Chairman McDermott and his 
staff to develop this section and hope it can be passed expeditiously.

          The Academy is profoundly concerned that the recent 
        Centers for Medicare and Medicaid Services interim final rule 
        on Case Management Services represents a step away from care 
        coordination. While the rule states that its purpose is to 
        improve care coordination, the significant limits it imposes 
        are likely to restrict state flexibility and deny the child 
        welfare system valuable tools to coordinate health and related 
        services for children in foster care. The Academy strongly 
        endorsed the legislation passed by the House to place a 
        moratorium on this rule.

     Financing should reimburse healthcare professionals for 
the more complex and lengthy visits that are typical of the foster care 
population. Financing must also cover the cost of the healthcare 
management to ensure that this medically complex population receives 
appropriate and timely healthcare services.\50\
---------------------------------------------------------------------------
    \50\ Ibid.
---------------------------------------------------------------------------
     Child welfare agencies and healthcare providers should 
develop and implement systems to ensure the efficient transfer of 
physical, developmental, and mental health information among 
professionals who treat children in foster care.\51\
---------------------------------------------------------------------------
    \51\ Ibid.
---------------------------------------------------------------------------
     Health insurance for children and adolescents in foster 
care must include a comprehensive benefits package, such as the Early 
and Periodic Screening, Diagnosis and Treatment (EPSDT) package, to 
cover the wide array of services needed to ensure optimal physical, 
emotional, developmental, and dental health.\52\
---------------------------------------------------------------------------
    \52\ Ibid.

Mental Health Services for Children in Foster Care
      If children in state custody are placed on medication, 
there should be an established protocol for obtaining consent and 
monitoring the use of that medication. Depending on the state, parties 
authorized to provide this consent could include a juvenile court 
officer, social services commissioner, or other authorized guardian or 
agency with assistance from a clinician knowledgeable of the evidence 
regarding psychotropic medication use. Pediatric and mental health 
providers should have ongoing communication with the child and 
caregivers to monitor treatment response, side effects and potential 
adverse reactions. Caseworkers also should maintain documentation 
regarding recommendations for prescriptions, changes in dosage and side 
effects, and child's response to medication as a treatment option. 
Youth should be involved and educated about the risks, benefits, and 
side effects of taking psychotropic medications. When appropriate, the 
assent of youth should be documented in addition to consent of the 
caretaker and/or caseworker.\53\
---------------------------------------------------------------------------
    \53\ American Academy of Pediatrics. Committee on Early Childhood, 
Adoption, and Dependent Care. Healthcare of young children in foster 
care. Pediatrics 2002;109:536-41.

     Financing should include funds for developing family-based 
approaches to mental health and developmental services.\54\
---------------------------------------------------------------------------
    \54\ Ibid.
---------------------------------------------------------------------------
     Both the National Child Abuse and Neglect Data System 
(NCANDS) and the Adoption and Foster Care Analysis and Reporting System 
(AFCARS) should track at least basic information on the use of 
psychotropic medications among children in foster care. At present, 
neither system collects any data in this area. The Academy filed 
comments with the Administration on Children, Youth and Families on 
March 5, 2008 that included recommendations for new AFCARS data 
elements on psychotropic drug prescriptions for children in foster 
care.

    Mr. Chairman and Members of the Subcommittee, I deeply appreciate 
this opportunity to offer testimony on behalf of the American Academy 
of Pediatrics. I stand ready to answer any questions you may have, and 
I thank you for your commitment to the health of the children of our 
nation.

                                 

    Chairman MCDERMOTT. Mr. Weller points out, perhaps I could 
do some education. Green is for five minutes. When it goes to 
yellow, that means you got a minute. When it's red, it's over. 
It's a little late for show and tell, but thank you very much 
for your testimony.
    Christopher Bellonci is the medical director at the Walker 
School in Needham, Massachusetts.

            STATEMENT OF CHRISTOPHER BELLONCI, M.D.,
              MEDICAL DIRECTOR, THE WALKER SCHOOL

    Dr. BELLONCI. Thank you, Mr. Chairman and Members of the 
Committee.
    I am pleased to be here on National Children's Mental 
Health Awareness Day to discuss this important issue. I am 
prepared to speak today as a child psychiatric practitioner, a 
consultant to the child welfare system, and a medical director 
of a residential treatment center. One possible explanation for 
the apparent overuse of psychiatric medications for children in 
the child welfare system is the high rate of mental illness 
found in this population.
    Studies indicate that 60 to 85 percent of the children 
being served by the child welfare system meet criteria for a 
DSM4 psychiatric diagnosis. In many cases, this is related to 
the trauma that resulted in the removal from their family, but 
in the significant number of cases, the mental illness appears 
to have pre-dated their removal. These children's families are 
often significantly affected by mental illness and substance 
abuse. These familial conditions lead to a genetic 
predisposition to mental illness in their children. This risk 
can then be multiplied by in utero exposure to alcohol and 
other drugs. Often, these children then suffer neglect and 
abuse, which compound their genetic and biological risk to 
develop emotional and behavioral disorders.
    Multiple placements within the foster care system add 
additional burdens to healthy emotional development and impair 
coordinated mental health treatment. Early detection and 
assessment of the mental health needs of these children are 
critical in order for them to receive necessary mental health 
interventions.
    Unlike mentally ill children from intact families, these 
children rely on the State to provide informed consent for 
their treatment, to coordinate treatment planning and clinical 
care, and to provide longitudinal oversight of their treatment. 
The State has a duty to perform this protective role for 
children in State custody. However, the State must also take 
care not to reduce access to needed and appropriate services.
    Many children in State custody benefit from psychotropic 
medications as part of a comprehensive, mental health treatment 
plan. As a result of several highly publicized cases of 
questionable prescribing practices, treating youth in State 
custody with psychopharmacological agents has understandably 
come under increased scrutiny. Many states have implemented 
consent, authorization and monitoring procedures for the use of 
psychotropic medications for children in State custody.
    Unfortunately, these policies have unintended consequences, 
such as delaying the provision of or reducing access to 
necessary medical treatment. I believe the critical question in 
this discussion is whether medication is being prescribed 
appropriately in ensuring that all the child's mental health 
needs are being adequately addressed.
    Most psychoactive medications do not, as yet, have specific 
approval by the FDA for children under age 12. This approval 
requires research demonstrating safety and efficacy, and, the 
research so far lags behind the clinical use of these 
medications. Long-term studies are needed to adequately 
determine the safety and efficacy of psychoactive medications 
in this age group.
    In making decisions to prescribe such medications, child 
psychiatrists are often left to evaluate data from studies in 
adults, even though there are documented cases of medications 
that were safe in adults causing unanticipated side effects in 
children.
    The lack of data supporting current prescribing trends 
makes the informed consent process all the more critical for 
children in State custody. In my consulting work in Tennessee I 
drafted medication monitoring guidelines for use by that 
state's child welfare workers. These guidelines are meant to be 
used by child welfare caseworkers in their monitoring of 
psychotropic medications prescribed for children in care.
    They are similar to those developed in other jurisdictions; 
and, frankly coming up with a common agreement for thresholds 
that should trigger a clinical review should not be that 
difficult. These guidelines are not intended to dictate 
treatment decisions by individual providers. Every child or 
adolescent has unique needs that require individualized 
treatment planning.
    At times in my own practice, the appropriate treatment for 
a specific child will fall outside of the parameters of these 
guidelines, but, I would expect that if anybody questioned why 
a specific child was on a medication under my care, I could 
give a rational explanation.
    State child welfare agencies need to develop a second 
opinion capacity for times when prescribing practices fall out 
of established guidelines for community systems of care. In 
Tennessee the State contracts with five university medical 
centers in five different regions of the State to provide 
expert second-opinion capacity regarding all aspects of a 
child's mental health diagnosis and treatment planning, 
including psychiatric medication.
    I've included the guidelines I developed for Tennessee in 
my written statement and would be happy to discuss them in more 
detail during the question and answer period of this hearing.
    Thank you.
    [The prepared statement of Christopher Bellonci, M.D., 
follows:]

           Prepared Statement of Christopher Bellonci, M.D.,
      Medical Director, The Walker School, Needham, Massachusetts

    Mr. Chairman and Members of the Committee, my name is Christopher 
Bellonci, M.D. and I am pleased to be here to discuss the important 
issues related to psychotropic medication use among children in 
America's foster care system. I am a board-certified child and 
adolescent psychiatrist and the medical director at Walker, a multi-
service agency in Needham, Massachusetts where I work directly with 
children in the child welfare system. I am a member of the American 
Academy of Child and Adolescent Psychiatry as well as a member of the 
Mental Health Advisory Board of the Child Welfare League of America. 
For several years I have been consulting to the State of Tennessee's 
child welfare agency helping that State to revise their policies and 
procedures regarding psychotropic medication use and behavior 
management.
    As Dr. Zito has outlined in her testimony, children in child 
welfare appear to be prescribed psychotropic medication at higher rates 
than children who are not within the child welfare system. In 
Tennessee, unpublished data indicated that approximately 25% of the 
children in that system were taking psychiatric medication. As you have 
heard from Dr. Zito, her most recent study of children in the Texas 
child welfare system showed 34.7% of the children were taking 
psychiatric medications with 41.3% of those children on psychiatric 
medications taking three or more medications.
    One possible explanation for the apparent overuse of psychiatric 
medications for children in the child welfare population is the high 
rate of mental illness found in this population. Studies indicate that 
60-85% of the children being served by the child welfare system meet 
criteria for a DSM-IV Psychiatric diagnosis. In many cases this is 
related to the trauma that resulted in their removal from their family 
but in a significant number of cases the mental illness appears to have 
predated their removal. With such a high prevalence of mental illness 
in this population, screening for mental disorders is superfluous and 
instead providers time would be better served moving to a comprehensive 
assessment of the child and family's strengths and needs that can be 
used for treatment planning and service delivery.
    The families from which these children were removed are often 
significantly affected by mental illness and substance abuse. These 
familial conditions lead to a genetic predisposition to mental illness 
in their children. This risk can be multiplied by in-utero exposure to 
alcohol and other drugs. Often these children then suffer neglect and 
abuse compounding their genetic and biological risks to develop 
emotional and behavioral disorders. Multiple placements within the 
foster care system add additional burdens to healthy emotional 
development and impair coordinated mental health treatment. Early 
detection and assessment of the mental health needs of these children 
is critical in order for them to receive necessary mental health 
interventions.
    Unlike mentally ill children from intact families, these children 
rely on the state to provide informed consent for their treatment, to 
coordinate treatment planning and clinical care, and to provide 
longitudinal oversight of their treatment. The state has a duty to 
perform this protective role for children in state custody. However, 
the state must also take care not to reduce access to needed and 
appropriate services. Many children in state custody benefit from 
psychotropic medications as part of a comprehensive mental health 
treatment plan. As a result of several highly publicized cases of 
questionable prescribing practices, treating youth in state custody 
with psychopharmacological agents has come under increased scrutiny. 
Many states have implemented consent, authorization, and monitoring 
procedures for the use of psychotropic medications for children in 
state custody. Unfortunately, these policies can have unintended 
consequences such as delaying the provision of, or reducing access to, 
necessary medical treatment.
    The critical question in this discussion is whether medication is 
being prescribed appropriately and ensuring that all of the child's 
mental health needs are being adequately addressed. Most psychoactive 
medications prescribed for children under age twelve do not as yet have 
specific approval by the Food and Drug Administration (FDA); such 
approval requires research demonstrating safety and efficacy. Such 
research, so far, lags behind the clinical use of these medications. 
Long-term studies are needed to adequately determine the safety and 
efficacy of psychoactive medications in this age group. In making 
decisions to prescribe such medications child psychiatrists often are 
left to evaluate data from studies in adults even though there are 
documented cases of medications that were safe in adults causing 
unanticipated side-effects in children. The lack of data supporting 
current prescribing trends makes the informed consent process all the 
more important for children in state custody. The prescribing of 
multiple psychotropic medications (``combined treatment'' or 
``polypharmacy'') in the pediatric population is on the increase. 
Little data exist to support advantageous efficacy for drug 
combinations, used primarily to treat co-morbid conditions. The current 
clinical ``state-of-the-art'' supports judicial use of combined 
medications, keeping such use to clearly justifiable circumstances 
(AACAP policy statement 9/20/01).
    In my consulting work in Tennessee, I drafted medication monitoring 
guidelines for use by that state's child welfare workers. The 
guidelines were meant to be used by child welfare caseworkers in their 
monitoring of psychotropic medications prescribed for children in care. 
They were not intended to dictate treatment decisions by providers. 
Every child or adolescent has unique needs that require individualized 
treatment planning. At times, the appropriate treatment for a specific 
child will fall outside the parameters of these guidelines. State child 
welfare agencies need to develop a second opinion capacity for times 
when prescribing practices fall out of established guidelines or 
community standards of care. In Tennessee, the state contracted with 
four university medical centers in four different regions of the state 
to provide expert second opinion capacity regarding all aspects of a 
child's mental health diagnosis and treatment including psychiatric 
medication.
    It was the intent of the following guidelines that children in care 
receive necessary mental health treatment, including psychotropic 
medications, in a rational and safe manner. The guidelines reflect 
common practice wisdom in the field of child psychiatry:

      Medication should be integrated as part of a 
comprehensive treatment plan that includes:

          Appropriate behavior supports and treatment
          Symptom and behavior monitoring
          Communication between the prescribing clinician and 
        the youth, parents, guardian, foster parents, child welfare 
        case manager, therapist(s), pediatrician, school staff and any 
        other relevant members of the child or youth's treatment team

      Medication decisions should be appropriate to the 
diagnosis of record, based on specific indications (i.e., target 
symptoms), and not made in lieu of other treatments or supports that 
the individual needs. There should be an effort, over time, to adjust 
medication dosages to the minimum dosage at which a medication remains 
effective and side effects are minimized. Periodic attempts at taking 
the child off medication should also be tried and, if not, the 
rationale for continuing the medication should be documented.
      Medication decisions need to be based upon adequate 
information, including psychiatric history and assessment, medication 
history, medical history including known drug allergies and 
consideration of the individual's complete current medication regimen 
(including non-psychoactive medications, e.g., antibiotics).
      Polypharmacy, or the use of multiple psychiatric 
medications, should be avoided.
      When a recommendation is made for a child to take more 
than one medication from the same class (e.g., two anti-psychotic 
medications), the recommendation should be supported by an explanation 
from the prescribing clinician and may warrant review by a consultant 
to the child welfare system.
      A child taking more than three psychotropic medications 
should prompt an explanation from the prescribing clinician and may 
warrant review by a consultant to the child welfare system.
      Medication dosages should be kept within FDA guidelines 
(when available). The clinical wisdom, ``start low and go slow'' is 
particularly relevant when treating children in order to minimize side 
effects and to observe for therapeutic effects. Any deviations from FDA 
guidelines should be supported by an explanation from the prescribing 
clinician and may warrant review by a consultant to the child welfare 
system.
      Unconventional treatments should be avoided. Medications 
that have more data regarding safety and efficacy are preferred over 
newly FDA-approved medications.
      Medication management requires the informed consent of 
the parents or guardians (unless parental rights have been terminated 
in which case the state must provide informed consent) and must address 
risk/benefits, potential side effects, availability of alternatives to 
medication, prognosis with proposed medication treatment and without 
medication treatment and the potential for drug interactions.
      The risk versus benefit of a medication trial needs to be 
considered and continually reassessed, and justification should be 
provided, where the benefit of a medication comes with certain risks or 
negative consequences.
      Children on psychotropic medications should be seen by 
their prescribing clinician no less that once every three months. This 
is a bare minimum and children in acute settings, displaying unsafe 
behavior, experiencing significant side effects, starting on SRI's or 
not responding to a medication trial or in an active phase of a 
medication trial should be seen more frequently.
      If laboratory tests are indicated to monitor therapeutic 
levels of a medication or to monitor potential organ system damage from 
a medication these lab studies should be performed every three months 
at a minimum (maintenance phase). If the medication is being initiated, 
these lab studies will need to be performed more frequently until a 
baseline is achieved.

    In addition to developing the guidelines, a computerized, 
interactive state-of-the-art training curriculum was developed for all 
child welfare staff in Tennessee. The curriculum used clinical 
vignettes to teach child welfare staff about the revised psychotropic 
medication policies and procedures as well as the medication 
guidelines. The Department is also working to update its information 
technology system to be able to embed the guidelines into their 
database so that when a child's psychiatric medications fall out of the 
guidelines an alert is sent to the case manager or supervisory staff. 
This system would work similar to a pharmacy's computer program 
alerting the pharmacist to possible medication contraindications.
    State child welfare agencies should create websites that can 
provide ready access for clinicians, foster parents, and other 
caregivers to pertinent policies and procedures governing psychotropic 
medication management, psycho-educational materials about psychotropic 
medications, consent forms, adverse effect rating forms, reports on 
prescription patterns for psychotropic medications, and links to 
helpful, accurate, and ethical websites about child and adolescent 
psychiatric diagnoses and psychotropic medications (AACAP Position 
Statement on Oversight of Psychotropic Medication Use for Children in 
State Custody: A Best Practices Guideline).
    States should develop the capacity to monitor the rate and types of 
psychotropic medication usage by children in state care as well as the 
rate of adverse reactions to prescribed medications. States should 
establish a process to review non-standard, unusual, and/or 
experimental psychiatric interventions with children who are in state 
custody. States should collect and analyze data and make quarterly 
reports to the state or county child welfare agency regarding the rates 
and types of psychotropic medication being prescribed to children in 
their care. Making this data available to clinicians in the state could 
serve as a vehicle to improve the quality of care provided to children 
in state custody.
    Thank you for the opportunity to address this important area of 
concern impacting America's most vulnerable youth.

                                 

    Chairman MCDERMOTT. Thank you.
    Mr. Weller, would you like to ask the first question?
    Mr. WELLER. Sure, Mr. Chairman, recognizing that the delay 
of our hearing may have made it difficult for other Members of 
the Subcommittee to attend because of various obligations in 
their schedules, can I ask unanimous consent that Members of 
the Subcommittee have five legislative days to submit questions 
to the witnesses for the record?
    Chairman MCDERMOTT. Without objection, it's ordered.
    Mr. WELLER. I should say written questions to the 
panelists.
    Ms. Stenslie, thank you for your testimony. You had 
personal experiences both as a foster youth, but also as a 
foster parent, and clearly you are very committed to foster 
children because of your role with the alumni association.
    You know, Mr. Chairman, she spoke eloquently about the need 
for the ability of foster youth to be able to somehow maintain 
their records if they're going to change foster homes, and be 
able to take those medical records with them if they change 
positions as well. Of course, we've been working in the Ways 
and Means Committee and there's been a bipartisan effort on 
electronic records and other capabilities with technology we 
have. I've often wondered why can't we do that. So perhaps 
that's an area you and I can work together on.
    Ms. Stenslie, why do so many foster youth end up being 
prescribed medication, both from your personal experience, but 
also from your observation?
    Ms. STENSLIE. I'm glad you asked that and I don't think 
there's a really predictable answer, but what I've seen in the 
foster care system, a lot of times we end up doing things to 
make it easier for the adults. The adults are overworked and 
they're underpaid, and they have all kinds of commitment and 
idealism when they start. Then they get squashed by our system 
and how hard it is to work in, and I've been there.
    So we do a lot of things in child welfare to try to make 
things easier for the adults; and, so, I think a lot of times 
managing a young person's behavior through the use of 
medication is a way to try to make it possible for foster 
parents to stick with this kid just a little longer, or for the 
group home to not send them to a higher level of care, that we 
do it so the adults in their lives can figure out how to cope 
with them.
    I think that a lot of times medication is used as a 
chemical restraint for children whose behavior get out of 
control. Dr. Leslie talked about a little girl who broke 
windows and televisions, and certainly we know that's not safe 
or healthy for anybody, but, we also know that we can't take 
away what she went through by giving her a pill. So, maybe the 
pill is the stopgap measure, but we have to help her figure out 
how to negotiate what she went through, because her reality is 
not going to change.
    Mr. WELLER. I have a 20-month-old daughter and there's days 
we're a little tired when we get home. So, I think I understand 
where you're coming from on that.
    You state in your testimony: ``Over the years, I was on 
more medications than I can count, usually without my knowing 
what the meds were for, how I should expect to feel, side 
effects to watch out for, or any plan for follow-up.'' You had 
questions.
    Did anyone in your life ever give you answers to those 
questions?
    Ms. STENSLIE. No. It wasn't until I was an adult and I was 
in college that I actually found a therapist myself and she 
told me that I would be able to go and get some of my records 
and find out what all of that was about, because I didn't leave 
the system with any of that information. So she helped me to at 
least get a clinical profile from my last stint in placement; 
and, it said right on there that I had post-traumatic stress 
disorder and depression. That's something that no one ever told 
me.
    Mr. WELLER. Your caseworker never discussed this with you, 
your foster parents never discussed it with you?
    Ms. STENSLIE. No.
    Mr. WELLER. Your doctor never discussed it with you that 
prescribed the medicine?
    Ms. STENSLIE. No.
    Mr. WELLER. For me it's very frustrating, because for a 
better job and better life, a person needs a high school 
diploma, and so many foster youths go from school to school to 
school. It makes it difficult for them not only to socialize, 
but to develop friends.
    Ms. Stenslie. I've been to at least 25 schools.
    Mr. WELLER. 25 schools in your own personal experience.
    How many doctors did you encounter during that period of 
time? You went to 25 different schools?
    Ms. STENSLIE. Right. Probably fewer than you would expect, 
because much of that time I was completely without health or 
mental healthcare, so I didn't have as many doctors as I did 
social workers, because the social workers were required. The 
doctors were seen as a luxury.
    Mr. WELLER. So, do you think the process worked in your own 
experience or as it currently exists does it work for kids when 
it comes to their exposure to psychotropic drugs that may be 
prescribed in their case?
    Ms. STENSLIE. I think it works for some. I think there are 
a lot of really highly qualified and invested doctors out 
there; and, obviously, many of them are here today, but I think 
it takes a special set of skills and knowledge to be competent 
in dealing with youth who come from very highly traumatized 
backgrounds.
    I think you also have to, on top of the trauma informed 
care expertise, know about foster care, because it brings its 
own set of life circumstances that you can't possibly 
understand unless you purposely tried to.
    Mr. WELLER. Thank you.
    Mr. Chairman, you've been generous and my red light's been 
on for some time.
    [Laughter.]
    Mr. WELLER. Thank you.
    Chairman MCDERMOTT. Thank you.
    In listening to this it's interesting that I had written 
down the same questions that Mr. Weller explored. That is, why 
is it we can't have a medical home? So I'd like to move to the 
pros here for a second and ask. Well, not that you're not a 
pro, because you are a social worker, but those of you who have 
been roaming around the country looking at various systems, 
where have they gotten it together best?
    I understand there may be some desire to pump your own 
balloon, but if you could give us a clue as to where they have 
figured out how to coordinate the records and get a decent 
review system of what's going on and maybe peripherally get the 
kids involved in understanding what it is they're on and why, 
because that really is a part of the medical home situation. So 
I'd like to hear what you think.
    Does it take a law suit like Tennessee to bring you up to 
the tips of your toes? Or, is there someplace where they really 
worked it out? So, it's really a blue book question for any one 
of you to jump in on. I'd like to hear what we should look at 
to emulate or encourage or, whatever.
    Dr. LESLIE. I'd be happy to comment on something. I'm not 
going to be commenting from the State level but just from what 
you asked initially about what is the medical home. So just for 
everyone's review, what we see is a medical home is a site 
where your care is continuous, coordinated, accessible, 
comprehensive.
    That's what should make a medical home. So, from the 
pediatrician's perspective, there's about three models I would 
say out there, again, from the pediatric perspective of what is 
a medical home. Several communities have come up with systems 
where there are multiple disciplines of people located at those 
settings where they're evaluating kids. So, you have somebody 
who is looking for developmental problems; somebody who is 
looking for educational problems; somebody who is looking at 
mental health; somebody who is looking at what medications a 
child is on for chronic health problems, and all that is put 
together. L.A. has one of those systems. Philadelphia does. 
Connecticut does; where kids who are entering foster care come 
and are evaluated in a comprehensive manner and then followed 
on a more routine basis over time.
    That's not always feasible in every community. In 
Rochester, for example, we have what some would call a foster 
care champion, Moira Szilagyi, has set up a clinic that 
specifically addresses the needs of children in foster care, so 
she may not be a part of a comprehensive center, but she is 
doing that on her own as a clinician. That's a second example.
    A third example would be mechanisms of making sure kids are 
evaluated in getting evidenced-based treatments in partnerships 
with other settings. Some states or counties have set up where 
child welfare and mental health, or child welfare and Medicaid, 
partner together around meeting those needs. Massachusetts, for 
example, somewhat like Tennessee, has just hired a whole group 
of nurses who are going to work and provide oversight within 
child welfare for what are the medical problems and what 
medications children are on. That would be a third example 
where it is actually housed in Medicaid mental health or child 
welfare. I think those are three different models.
    The other thing I'd say is I think the comprehensiveness of 
care is really important to stress. One of the things I was 
very lucky about when I mainly worked in California, but we 
worked to develop highly evidenced-based treatments for 
children in foster care. So, for example, I was lucky as a 
clinician to be able to refer a child and their foster parent 
to a program that's been developed out of Oregon where they 
actually train foster parents in the 16-week session on how to 
handle behavior problems. We've been able to show that 80 
percent of children will respond to that. About 20 don't, and 
those are the kids that have pretty serious mental disorders 
and need more than what a foster parent can provide, but that's 
using the person who's with the child the most as an 
intervention agent and I'd be happy to share information with 
that with any of you as well.
    Dr. LEA. Tennessee has been mentioned several times, so I 
want to make sure that I get a chance to comment. I think we've 
done some things right. The law suit has given us some 
financial means to make some steps that might otherwise not 
have been available.
    We also appreciate the house support of the moratorium on 
TCM as we're facing losing $73 Million for the care that we 
provide kids. I think we've been able to do, one of the things 
Dr. Leslie mentioned, was all children coming into custody 
getting a health screening within 30 days. That is something 
that we mandate and is done at our health department within 
links onto mental health health assessments in the community as 
needed.
    I mentioned in both my written and oral testimony about the 
centers of excellence that we have, those were actually created 
by a different lawsuit that we have but have really served us 
well. They were created specifically for kids in imminent risk 
of custody and our most complex cases go there.
    Those kids that have not only numerous mental health 
diagnoses that are aggressing in treatment, not progressing in 
treatment, nobody knows what to do with. Foster parents are at 
a loss, and the team of professionals that are psychology, 
neurology, medical take a look at that child. They do provide 
some ongoing care. Unfortunately, they are not able to see 
every child coming into custody or provide ongoing care for 
every child who remains in custody, but they have been a 
fabulous resource above and beyond the nurses, psychologists 
and psychiatrists that we have in-house in Tennessee.
    Chairman MCDERMOTT. Ms. Stenslie, you commented that at one 
point you wound up in detention, to some kind of a detention 
situation.
    I worked for a number of years at the center in the State 
of Washington where we dealt with all the kids who came through 
the juvenile justice system. We gave them a comprehensive work-
up at that point. I don't think we had a comprehensive work-up. 
This was Cascadia; that's now closed. I don't know whether 
they're still doing that in the State or not.
    Did you receive anything different when you got to that 
level of dysfunction?
    Ms. STENSLIE. You know, I'm not so sure, because people 
weren't discussing that with me directly. So I don't know for 
sure.
    In those correctional facilities there were certainly more 
people with doctor in their title than I had seen in other 
kinds of places; and, so, as an adult, someone who has worked 
in those systems, I know that there was more mental healthcare 
available right there on campus, but I don't know that I 
actually received it.
    I do remember very vividly standing in line with nearly 
every other resident of those facilities at eight o'clock every 
night and eight o'clock every morning to each get our little 
white paper pills in a little white cup. I'm not aware of 
receiving any more or better health or mental healthcare while 
I was there. The fact that I grew up without knowing about what 
my own diagnoses were and what the meds were for, I'd have to 
say as an adult then learning about that PTSD diagnosis, then I 
was able to take some control about it.
    Then I went and did some research and found out what it was 
and was able to look at those books and to ask questions and 
say, you know what? That does describe me and there are some 
ways to fix that out there and I'm not just crazy and I'm not 
just destined for a whole life of nightmares and not sleeping 
at night. Then I could claim what belonged to me and get rid of 
what didn't and address it, but I had no chance to even do that 
until somebody talked to me.
    Chairman MCDERMOTT. Dr. Thompson?
    Dr. THOMPSON. Well, medical home also would be the 
naysayer. It's the new buzz word. We went through chronic care 
management. We went through disease management and now we're at 
medical home, and quite frankly, I'm still perplexed about what 
this is, but I think it's a good idea. For me it's three 
things.
    I absolutely agree with records management, whether it's 
electronic or whether it has to be portable and it has to go, 
because how can you really tell what's going on. The other 
thing I think is missing is medical home has to be putting the 
client at the center with mental health, medical, and family 
services integrated.
    Most of the time, I don't know of any service that actually 
mixes and matches all those three together well. I think there 
are pieces and parts and we're trying to find those. We 
certainly are trying, but we haven't figured out Washington 
State.
    Chairman MCDERMOTT. What's the place that you wind up with 
the problem in coordinating the three?
    Dr. THOMPSON. Well, I think its contracts are separate. 
Budgets are separate. You fund mental health differently than 
medical and sometimes differently than family services; and, 
therefore, you contract differently. There are multiple mixes 
of people in this discussion and there is not really good 
integration. That's fundamentally what I see.
    So when you can write contracts and funding streams where 
they all have to talk, then I think that's a medical home. 
Whoever wants to be at the center, at the top, whatever, fine, 
but, right now, I see it as, ``Is it the pediatrician that 
wants to be at the center?''
    As far as I'm concerned, the client's at the center, and 
everybody's got to talk around that client. My take-home point 
is that we have not done a good enough job of explaining med 
management to the families and the clients. I'll take that 
home, and that's going to happen.
    The third thing is standards. You can send him off to a 
medical home, but if we don't all agree on what the standards 
are, what the care is, and we see it in our State, in some 
places it's a whole bunch of meds. In some places it's not many 
meds. In some places it's meds combined with mental health 
treatment. So I think standards are really important. I know 
it's probably a dirty word, but, people have got to. What we 
demand of banking and what we demand of our automobile industry 
and our space industry is that we've got to take an industrial 
approach or an engineering approach. There can't be the 
standard of variation that we see in medicine.
    I know that's probably not the best thing to say, but as I 
look at it, we've got to do what we've done really well in 
banking and automobile; and, we can push that into medical. I 
think we're going to do a much better job.
    Chairman MCDERMOTT. Is that happening in the pediatrics 
association, the National Association of Pediatrics?
    Dr. LESLIE. In terms of setting standards?
    Chairman MCDERMOTT. Yes.
    Dr. LESLIE. Well, both the American Academy of Child and 
Adolescent Psychiatry and the American Academy of Pediatrics 
routinely publish guidelines on what's appropriate treatment 
and try to get those into the community.
    Chairman MCDERMOTT. So you've got the guidelines. You've 
published them. They simply are not filtering down to the 
practitioners or there's no oversight.
    Dr. BELLONCI. There's a great deal of variability, and I 
don't know that any of the states have all the components that 
I would like to see implemented. I think there are good 
examples of some best practice and merging some of what you've 
heard today.
    This doesn't have to be that complicated. We need to have 
screening at intake and point of removal. Was the child already 
diagnosed with a psychiatric condition? Are they already taking 
psychiatric medication so they continue on those, if they had a 
preexisting condition?
    Do they have an emerging trauma related to the removal 
itself?
    If you believe the statistics that 60 to 85 percent of 
these kids are going to be diagnosed with a psychiatric 
condition, when I was trained in medical school you skipped 
screening and you just go to comprehensive assessment of their 
needs and strengths and move to treatment planning, because why 
waste your dollars screening at such a high incidence rate?
    We then need to have comprehensive treatment plans that may 
include medication recommendations, but, states should not 
assume that just because a doctor is prescribing this 
psychiatric medication that that precludes their need to have a 
second opinion capacity. I think there are some very scary 
stories of medication practices that you're hearing about.
    I recently admitted a three-year-old who was on three 
psychiatric medications including lithium; and, when I brought 
that to the attention to the child welfare agency I couldn't 
even get a response from them. The child left on a small dose 
of a stimulant medication.
    There needs to be informed consent by knowledgeable, 
trained, child welfare staff if and only if the parent or 
guardian can't be there. There clearly needs to be information 
sharing with the child themselves, even when I'm working with 
four and 5-year-olds as best as I can in a developmentally 
appropriate way. I'll talk about why I am giving them that 
medication and what they should expect, and what they might 
need to look for. I meet with them frequently to monitor their 
side effects or their response.
    There needs to be an IT system that can actually tell the 
child welfare system what are the medications these children 
are taking in the individual case as well as in the aggregate. 
Then there needs to be a Committee that actually reviews that 
data periodically so that they can inform practice and engage 
the child psychiatric community.
    Chairman MCDERMOTT. Thank you all for your testimony. 
Mention was made of the section in the Invest in KIDS Act about 
the healthcare coordination and Mr. Weller and I are working on 
trying to bring. We may not get the huge bill out of here. This 
Congress is a little bit confusing in terms of trying to do 
something big, but we're trying to do some thing that we think 
can help the system, particularly in this area before the end 
of the session.
    So, thank you very much for not only coming but waiting and 
participating and we thank you for coming. Thank you very much.
    The meeting is adjourned.
    [Whereupon, at 1:37 p.m., the Subcommittee was adjourned.]
    [Responses to Questions for the Record posed by Chairman 
McDermott to Julie M. Zito, Ph.D. follow:]
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    [Responses to Questions for the Record posed by Chairman 
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    [Responses to Questions for the Record posed by Chairman 
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    [Responses to Questions for the Record posed by the 
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    [Responses to Questions for the Record posed by Chairman 
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                       Statement of Bruce Lesley
    Mr. Chairman, Ranking Member Weller and Members of the House 
Subcommittee on Income Security and Family Support, thank you for this 
opportunity to submit comments for the record regarding the May 8, 2008 
hearing on the Utilization of Psychotropic Medication for Children in 
Foster Care.
    First Focus is a bipartisan advocacy organization committed to 
making children and their families a priority in federal policy and 
budget decisions. Our organization is dedicated to the long-term goal 
of substantially reducing the number of children entering foster care, 
and working to ensure that our existing system of care protects 
children and adequately meets the needs of families in the child 
welfare system. We are especially concerned with ensuring access to 
appropriate and high-quality health and behavioral healthcare for 
foster children.
    As you know, children who have been abused or neglected often have 
a range of unique physical and mental health needs far greater than 
other high-risk populations, including physical disabilities and 
developmental delays. For instance, foster children are more likely 
than other Medicaid children to experience emotional and psychological 
disorders and have more chronic medical problems. In fact, studies 
suggest that nearly sixty percent of children in foster care experience 
a chronic medical condition, and one-quarter suffer from three or more 
chronic health conditions.\1\ In addition, nearly 70% of children in 
foster care exhibit moderate to severe mental health problems,\2\ and 
40% to 60% are diagnosed with at least one psychiatric disorder.\3\
---------------------------------------------------------------------------
    \1\ Simms, M.D., Dubowitz, H., & Szailagyi, M.A. (2000). Needs of 
children in the foster care system. Pediatrics , 106 (Supplement), 909-
918.
    \1\ Kavaler, F. and Swire, M.R. (1983). Foster Child Healthcare. 
Lexington, MA: Lexington Books; 1983.
    \3\ dosReis, S., Zito, J.M., Safer, D.J., & Soeken, K.L. (2001). 
Mental health services for foster care and disabled youth. American 
Journal of Public Health , 91, 1094-1099.
---------------------------------------------------------------------------
    Given that a large number of children in foster care exhibit 
behavioral problems, it is not all too surprising to see high 
psychotropic medication usage rates for this population. Studies have 
shown that kids in foster care are prescribed psychotropic medications 
at a much higher rate than other children--2 to 3 times higher.\4\ Yet 
youth in foster care are often prescribed two or three medications, the 
effects of which are not well-known in combination.\5\ In fact, in the 
Medicaid program, children in foster care are much more likely to use 
psychotropic medications than children who qualify through other aid 
categories.\6\
---------------------------------------------------------------------------
    \4\ Raghavan, R., Zima, B.T., Anderson, R.M., Leibowitz, A.A., and 
Schuster, M.A. (2005). Psychotropic medication use in a national 
probability sample of children in the child welfare system. Journal of 
Child and Adolescent Psychopharmacology, 15, p. 97-106.
    \5\ dos Reis, S., Zito, J.M., Safer, J.M., Gardner, D.J., Puccia, 
J.F., Owens, K.B., and Pamela, L. (2005). Multiple psychotropic 
medication use for youths: a two-state comparison. Journal of Child and 
Adolescent Psychopharmacology, 15 (1), p. 68-77.
    \6\ dosReis, S., Magno Zito, J., Safer, D.J., and Soeken, K.L. 
(2001). Mental Health Services for Youths in Foster Care and Disabled 
Youths. American Journal of Public Health, Vol. 91, No. 7.
---------------------------------------------------------------------------
    A number of states have reported alarmingly high rates of 
psychotropic medication use for foster children. For instance, in 2004, 
37.3% of children in the Texas foster care system were prescribed 
psychotropic medications.\7\ In a random sample of 472 Texas foster 
children prescribed psychotropic medications, researchers Zito and 
Safer found that 41.3% received 3 or more different psychotropic 
medication classes concomitantly, and 15.9% received 4 or more.\8\ 
Furthermore, in 2006, Texas Comptroller for Public Accounts, Carole 
Keeton Stayhorn issued a comprehensive special report on the treatment 
of foster children in the state. The report found that psychotropic 
drugs accounted for well over 76% of all medications prescribed to 
Texas children in foster care, and a number of the medications 
prescribed to children in care had shown little to no efficacy in 
research studies.\9\
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    \7\ Zito, J.M., and Safer, D.J. External Review: A 
pharmacoepidemiologic analysis of Texas foster care.
    \8\ Zito, J.M., and Safer, D.J. External Review: A 
pharmacoepidemiologic analysis of Texas foster care.
    \9\ Stayhorn, C.K., Texas Comptroller of Public Accounts (2006). 
Texas healthcare claims study--special report: Foster children.
---------------------------------------------------------------------------
    Similarly, a California study found that in comparison to a 
statewide sample of children enrolled in Medicaid, children in foster 
care were nearly 3 times more likely to receive psychotropic 
medication. Additionally, their use of methylphenidate (a prescription 
stimulant commonly used to treat ADD and ADHD) in the past year was 
twice as high as the national estimates.\10\ A study of Iowa's foster 
care population found that 42% of children in foster care had been 
prescribed psychotherapeutic medication within the 20 month study 
period.\11\ A 2001 study of a Florida county foster care population 
found that 23% of the sample was using medication at the time, and, 57% 
of the sample had multiple prescriptions.\12\
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    \10\ Zima, B.T., Bussing, R., Crecelius, G.M., Kaufman, A., and 
Belin, T.R. (1999). Psychotropic medication use among children in 
foster care: Relationship to severe psychiatric disorder. American 
Journal of Public Health, vol. 89, No. 11.
    \11\ University of Iowa, Public Policy Center (2004). Health policy 
brief: A study of Iowa's children in foster care. No. 4.
    \12\ Green, D.L., Hawkins, W., and Hawkins, M. (2005). Medication 
of children and youth in foster care. Journal of Social Work in 
Disability and Rehabilitation.
---------------------------------------------------------------------------
    Nationally, we see a similar and all too disturbing trend. 
Prescriptions for psychotropic medications have increased dramatically 
for children with behavioral and emotional problems over the last 20 
years, a trend evident for younger age groups--even 
preschoolers.13,14,15 Many have expressed alarm about the 
safety, efficacy and long-term consequences of psychotropic medication 
use in children, especially concerning younger age 
groups.16,17,18 Specifically, researchers have voiced 
concerns about the effects of these medications on the developing 
brain, and the safety and effectiveness of medications tested in adults 
for attenuating behavioral and emotional symptoms in children.
---------------------------------------------------------------------------
    \13\ Zito, J.M., Safer, D.J., dosReis, S., Gardner, J.F., Magder, 
L., Soeken, K., Boles, M., Lynch, F., and Riddle, M.A. (2003). 
Psychotropic practice patterns for youth: a 10-year perspective. 
Archives of Pediatrics & Adolescent Medicine, 157(1): 14-6.
    \14\ Olfson, M., Marcus, S.C., Weissman, N.M., and Jensen, P.S. 
(2002). National trends in the use of psychotropic medications by 
children. Journal of the American Academy of Child and Adolescent 
Psychiatry. 41(5): 514-21.
    \15\ Zito, J.M., Safer, D.J., dosReis, S., Gardner, J.F., Boles, 
M., and Lynch, F. (2000). Trends in the prescribing of psychotropic 
medications to preschoolers. JAMA, Vol 283, No. 8.
    \16\ Vitiello, B. (1998). Pediatric psychopharmacology and the 
interaction between drugs and the developing brain. Can J Psychiatry, 
43:582-584.
    \17\ Jensen, P.S. (1998). Ethical and pragmatic issues in the use 
of psychotropic agents in young children. Can J Psychiatry,43:585-588.
    \18\ Greenhill, L.L. (1998). The use of psychotropic medication in 
preschoolers: indications, safety, and efficacy. Can J Psychiatry, 
43:576-581.
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    Moreover, between 50% and 75% of psychotropic drugs are not 
approved for use in children or adolescents.\19\ For certain newer 
classes of drugs, medications have not been licensed for use in 
children. As a result, providers are often prescribing drugs for 
children ``off-label''--the practice of prescribing meds for use other 
than the intended indication.
---------------------------------------------------------------------------
    \19\ Schirm, E., Tobi, H., de Jong-van den Berg, L.T. (2003) Risk 
factors for unlicensed and off-label drug use in children outside the 
hospital. Pediatrics, 111(2):291--5.
---------------------------------------------------------------------------
    Overmedication for children in foster care is especially a concern 
given that they often go without adequate healthcare, little monitoring 
or adjustment of medications, and are offered few alternative treatment 
options, such as psychotherapy. In fact, a 1995 Government 
Accountability Office (GAO) report found that despite regulations 
requiring comprehensive routine healthcare for foster care children, 12 
percent receive no routine healthcare and 32 percent have unmet 
needs.\20\ Moreover, in a recent survey, HHS found that more than 30 
percent of foster care cases reviewed did not demonstrate the provision 
of adequate services to children.\21\
---------------------------------------------------------------------------
    \20\ Foster Care: Health Needs of Many Young Children Are Unknown 
and Unmet. (May 26, 1995). GAO/HEHS-95-114. Washington, D.C.
    \21\ U.S Department of Health and Human Services (HHS) (2005). 
General findings from the Federal Child and Family Services Review. 
http://www.acf.hhs.gov/cb/cwrp/results/statefindings/genfindings04/
genfindings04.pdf.
---------------------------------------------------------------------------
    A study by Stahmer and colleagues found that although toddlers and 
pre-schoolers in child welfare exhibit significant developmental and 
behavioral needs, few receive services. In fact, in this sample, 41.8% 
of toddlers and 68.1% of pre-schoolers exhibited deficits, yet only 
22.7% received services.\22\ The National Survey of Child & Adolescent 
Well-being similarly documented that only a quarter of children 
exhibiting behavioral problems in out-of-home care actually received 
mental health services within a one-year follow-up period.\23\ 
Comparable findings have been reported by a number of other 
researchers. For instance, Zima and colleagues (2000) found that 80% of 
children in a random sample received a psychiatric diagnosis, but only 
half actually received mental health or special education services.\24\
---------------------------------------------------------------------------
    \22\ Stahmer, A.C., Leslie, L.K., Hurlburt, M. et al. (2005). 
Developmental and behavioral needs and service use for youth children 
in child welfare. Pediatrics, 116, No. 4, 891-900.
    \23\ Burns, B.J., Phillips, S.D., Wagner, R.H. et al. (2004). 
Mental health need and access to mental health services by youths 
involved with child welfare: a national survey. Journal of the American 
Academy of Child and Adolescent Psychiatry. 43(8): 960-970.
    \24\ Zima, B.T., Bussing, R., Yang, X., et al. (2000). Help-seeking 
steps and service use for children in foster care, Journal of 
Behavioral Health Service and Research, 27, No. 3, 271-285.
---------------------------------------------------------------------------
    Moreover, data indicate that psychotropic medication use in foster 
children is often not appropriately monitored. In a sample of over 
1,100 child welfare case files reviewed, more than half of the children 
were taking at least one psychotropic medication. Sadly, forty-four 
percent of these children had no record of a medical evaluation and had 
not received a medical diagnosis. In addition, proper consent for 
administering medication had been obtained in less than half of the 
cases.\25\
---------------------------------------------------------------------------
    \25\ Florida Statewide Advocacy Council (2003). Psychotropic drug 
use in foster care. Available from: http://www.floridasac.org.
---------------------------------------------------------------------------
    We have a unique responsibility when it comes to foster children. 
Children in foster care are legal wards of the state courts or social 
service agencies, and it is our responsibility to ensure that every 
child in foster care receives the services, resources, and supports he 
or she needs. No child should be prescribed psychotropic medication 
without proper consent. It is critical that a child receives a 
comprehensive medical evaluation and a medical diagnosis before 
beginning treatment for a mental or behavioral disorder. Non-
pharmacological interventions (e.g. psychotherapy) should be considered 
as an alternative to psychotropic medication, or if appropriate, in 
combination with pharmaceutical treatment. Children on psychotropic 
medications should receive routine follow-up care and their 
prescription dosages should be regularly monitored and adjusted as 
appropriate. Any potential side-effects of medications should also be 
carefully monitored.
    A recent GAO report identified over-prescribing of psychotropic 
medications to foster children as one of the leading issues facing 
child welfare systems in the coming years.\26\ We urge you to request a 
GAO report on the practice of prescribing psychotropic medications for 
foster children to determine if these prescriptions are safe and cost 
effective, and examine the practice of prescribing these medications to 
young children. The study should also examine the practice of providers 
prescribing medications ``off-label'' and the frequency of prescribing 
concomitant use of psychotropic medications for this population.
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    \26\ GAO-07-850T (May 15, 2007). Additional Federal Action Could 
Help States Address Challenges in Providing Services to Children and 
Families, a testimony before the Subcommittee on Income Security and 
Family Support, Committee on Ways and Means, House of Representatives.
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    We believe that it is also important to invest in long-term drug 
safety investigations, provide ongoing clinical monitoring of 
psychotropic medication use in children, and develop the most 
appropriate and effective treatments possible for children in foster 
care.
    In closing, Mr. Chairman and Members of the committee, First Focus 
stands prepared to work with you to ensure that the healthcare needs of 
foster children are adequately met. We thank you for your leadership in 
addressing this critical issue, and protecting the health and welfare 
of our most vulnerable children. We look forward to working with you to 
ensure better care for our nation's foster children. If you have any 
additional questions, please contact Shadi Houshyar, VP for child 
welfare policy at First Focus, at (202) 657-0678.
            Sincerely,

                                                       Bruce Lesley
                                                          President

                                 
                       Statement of Jody Leibmann
    Children's Law Center of Los Angeles is a nonprofit public interest 
legal organization that serves as the voice for abused and neglected 
youth in the largest foster care system in the nation. Our committed 
attorneys represent over 25,000 abused and neglected children in the 
Los Angeles County foster care system.
    In addition to our daily advocacy on behalf of each child's 
individual needs and circumstances, we also take the knowledge and 
experience gained through our work to advocate for broader system 
reforms. In this vein, we are heartened and encouraged by the 
commitment of the Subcommittee on Income Security and Family
    Support to improve the lives of the more than half a million 
children living in the nation's foster care system and specifically to 
address the deficiencies in the current process regarding foster youth 
and psychotropic medications.
    We hope to draw your attention to three specific issues that we 
believe require attention and reform:
    (1) Improved court oversight of psychotropic medications prescribed 
to foster youth; (2) Increased youth participation in the decision-
making and monitoring process around the use of psychotropic 
medications; (3) Continuity of mental healthcare; and (4) Improved data 
collection and tracking.
Introduction
    Unfortunately, as a result of the trauma they have experienced, 
many youth in foster care suffer from mental and emotional problems 
that can jeopardize their safety, well-being, success in school, and 
may keep them from finding stable homes. For some of these children, 
psychotropic medications are a key part of effective mental healthcare. 
However, careful evaluation and monitoring are essential to ensure that 
these medications are safe and effective, and that they are not over or 
under utilized. To achieve this goal, we direct your attention to three 
main deficiencies in our system as it operates today.
Court Oversight
    Since the Court is considered the de facto ``parent'' of children 
in the foster care system, judges should have the authority to approve 
or deny any request by a doctor to have a foster child take a 
psychotropic medication. In order for the Court to make an informed 
decision, it is critical that the physician or healthcare professional 
requesting that the child take psychotropic medications submit a 
written request to the Court upon having conducted a full examination 
of the child. After reviewing the request against the Court's broader 
observations of the child throughout the duration of the case, Courts 
must then be sureto make orders for any needed therapy or behavioral 
intervention to run concurrent with the medication, and to put a plan 
in place to provide for regular monitoring of how well the medication 
is working--or not working--along with any side effects the youth is 
experiencing. Finally, the child's social worker should be required to 
submit regular reports to the court--at a minimum at each statutorily 
required review hearing--which include regular updates regarding 
progress in therapy and when the child was last seen by his or her 
physician so that the court can make orders that are based on updated, 
accurate information about the child.
Youth Participation
    Youth experience a great deal of frustration and anxiety when they 
are excluded from the decision making process and are not given an 
opportunity to communicate with the judge or to ask questions. 
Similarly, both judges and attorneys report that without the child's 
participation it is difficult to know exactly what is happening in the 
child's life and how a prescribed medication may be impacting a child's 
affect or demeanor. It has been our experience that when children and 
youth are able to attend their hearings they actively ask questions, 
engage in discussion with the judge, and leave with an understanding of 
why certain decisions, such as the decision to have a child take a 
powerful medication, have been made. Further, the Court can learn a 
great deal by observing in-person changes in the child's demeanor, 
affect or attitude.
    When it comes to psychotropic medications--powerful drugs that 
often involve serious side effects--it is critical that youth have the 
opportunity to provide input to the Court. This can best be 
accomplished by including them in the approval and monitoring process 
over these medications. While a doctor is the best person to decide 
which medication may be most appropriate for a child based on his or 
her medical history, weight, and other physical factors, for many 
foster youth who often move frequently between placements, the judge 
may be the only constant and consistent observer of that child's 
behavior and demeanor. Having the youth come to Court is therefore a 
critical component of ensuring appropriate Court oversight of the 
psychotropic medication process.
    Youth should also be given age-appropriate information about 
medications as well as the right to be heard in court and to object to 
a medication request.
Continuity of Care
    Continuity of health and mental healthcare is a major issue for 
foster children. They often move from home to home, and may see many 
different doctors and therapists. Some of our clients report that 
doctors who prescribed their medications spent little time with them 
and did not know their health history or prior medications. Some 
clients have been on medications for many years, starting when they 
were very young, have been prescribed multiple medications at the same 
time, and have experienced serious side effects.
    Issues such as insurance or Medicare coverage determinations should 
not impact the quality of mental healthcare that foster youth receive. 
Our recommendation is to implement a system whereby children able to 
establish trusting relationships with qualified therapist, and that 
they continue to receive treatment from that therapist for as long as 
possible. In the event that the youth has to see a different provider, 
the transition should be done as quickly and smoothly as possible 
without a delay in treatment. Finally, treatment should continue on a 
regular, uninterrupted basis until it is no longer necessary. Placement 
changes and other factors unrelated to mental health should not control 
or cause arbitrary changes in therapists or treatment plans.
Data Collection
    A cohesive system of data collection and tracking is the only way 
to ensure that true system reform is occurring and that outcomes for 
our foster youth with regard to psychotropic medications are improving. 
As such, child welfare agencies should be equipped with the resources 
to maintain records, optimally via an electronic database, that is 
regularly updated whenever there is a change in the child's medication 
or medications and contains information not only regarding all of the 
medications the child is taking, but also the dosage, target symptoms 
for which the medications were prescribed, the child's response to each 
medication, any side effects experienced, and the names and contact 
information of all treating physicians and mental healthcare providers.
Conclusion
    It is our hope that your consideration of our recommendations will 
lead to concrete reforms so that our juvenile courts have complete and 
accurate information and are better able to provide needed oversight of 
the use of psychotropic medications for foster youth; foster youth will 
have a better understanding and opportunity to participate in important 
medical decisions that impact their quality of life; and data tracking 
will lead to a better continuity of mental healthcare for our most 
vulnerable population.

                                 
                       Statement of Tara Thomson
    I am a Mother of four Children and a 71 year old mother that I have 
to care for without child support. I am on unemployment and it is about 
to end this month. I am going to lose it all if I can find a decent 
job. I lost my car and I am bankrupt. I have applied for foodstamps. 
Please help as we are Americans and why do we have to suffer anymore. I 
am a good mother and great daughter. I love my country and would like 
to see our fellow Americans have a better opportunity to make it in a 
bad economy. Plus would'nt make since to extend as when people do start 
spending the rebate checks and hopefully by then more jobs will be 
restored as well as more work needed to fill the demand for employers 
that have more business due to increased spending. It makes a lot of 
since we need to help this country get it back together. WE THE PEOPLE 
right . . . must I say anymore. . . . Give it a chance and I promise 
you will see a drop in homeless and straving kids and bankruptcy. 
Please help us. . . .
            Respectfully,
    Florida residences and Clearwater communities . . .
    Tara Thomson and family . . .