[House Hearing, 110 Congress]
[From the U.S. Government Publishing 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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45-553 PDF WASHINGTON : 2009
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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
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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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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.
Reference List
Administration for Children Youth and Families (2008). Trends in
Foster Care and Adoption--FY2000-FY2005 http://www.acf.hhs.gov/
programs/cb/stats_research/afcars/trends.htm.
American Academy of Child and Adolescent Psychiatry (2008). AACAP
Position Statement on Oversight of Psychotropic Medication Use for
Children in State Custody: A Best Principles Guideline http://
www.aacap.org/galleries/PracticeInformation/
FosterCare_BestPrinciples_FINAL.pdf.
American Academy of Pediatrics (2002). Healthcare of young children
in foster care. Pediatrics, 109, 536-541.
APHA Joint Policy Committee (2006). Regulating Drugs for
Effectiveness and Safety: A Public Health Perspective: Position Paper
http://www.lww-medicalcare.com/pt/re/medcare/aplus.html.
Bhatara, V.S., Feil, M., Hoagwood, K., Vitiello, B., & Zima, B.T.
(2002). Trends in combined pharmacotherapy with stimulants for
children. Psychiatric Services, 53, 244.
Bussing, R., Zima, B.T., & Belin, T. (1998). Variations in ADHD
treatment among special education students. Journal of the American
Academy of Child and Adolescent Psychiatry, 37, 968-976.
dosReis, S., Zito, J.M., Safer, D.J., Gardner, J.F., Puccia, K.B.,
& Owens, P. L. (2005). Multiple psychotropic medication use for youths:
a two-state comparison. Journal of Child and Adolescent
Psychopharmacology, 15, 68-77.
dosReis, S., Zito, J.M., Safer, D.J., & Soeken, K. (2001). Mental
health services for youths in foster care and disabled youths. American
Journal of Public Health, 91, 1094-1099.
Hagen, S. & Orbeck, L. A. (2006). The prescription of psychotropic
medications in foster care children: a descriptive study in St. Louis
County. www.d.umn.edu/sw/executive/hstacy.html.
Harman, J.S., Childs, G.E., & Kelleher, K.J. (2000). Mental
healthcare utilization and expenditures by children in foster care.
Archives of Pediatrics & Adolescent Medicine, 154, 1114-1117.
Klein, D.F. (1993). Clinical psychopharmacologic practice. The need
for developing a research base. Archives of General Psychiatry, 50,
491-494.
Klein, D.F. (2006). The flawed basis for FDA post-marketing safety
decisions: the example of antidepressants and children.
Neuropsychopharmacology, 31, 689-699.
Lader, M. & Naber, D. (1999). Difficult Clinical Problems in
Psychiatry. London: Martin Dunitz Ltd.
Mandell, D.S., Morales, K.H., Marcus, S.C., Stahmer, A.C., Doshi,
J., & Polsky, D.E. (2008). Psychotropic medication use among Medicaid-
enrolled children with autism spectrum disorders. Pediatrics, 121,
e441-e448.
Martinez-Mir, I., Garcia-Lopez, M., Palop, V., Ferrer, J.M., Rubio,
E., & Morales-Olivas, F.J. (1999). A prospective study of adverse drug
reactions in hospitalized children. British Journal of Clinical
Pharmacology, 47, 681-8.
Olfson, M., Marcus, S.C., Weissman, M.M., & 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,
514-521.
Pandiani, J. & Carroll, B. (2008). Vermont Mental Health
Performance Indicator Project http://healthvermont.gov/mh/docs/pips/
2008/documents/Pip022908.pdf.
Roberts, R., Rodriguez, W., Murphy, D., & Crescenzi, T. (2003).
Pediatric drug labeling. The Journal of the American Medical
Association, 290, 905-911.
Safer, D.J. (2004). A comparison of risperidone-induced weight gain
across the age span. Journal of Clinical Psychopharmacology, 24, 429-
436.
Safer, D.J. & Zito, J.M. (2006). Treatment-emergent adverse events
from selective serotonin reuptake inhibitors by age group:children
versus adolescents. Journal of Child and Adolescent Psychopharmacology,
16, 203-213.
Safer, D.J., Zito, J.M., & dosReis, S.M. (2003). Concomitant
psychotropic medication for youths. American Journal of Psychiatry,
160, 438-449.
Shatin, D., Levin, R., Ireys, H.T., & Haller, V. (1998). Healthcare
utilization by children with chronic illnesses: a comparison of
Medicaid and employer-insured managed care. Pediatrics, 102, e44.
Soumerai, S.B. & Avorn, J. (1990). Principles of educational
outreach (`academic detailing') to improve clinical decision making.
The Journal of the American Medical Association, 263, 549-556.
Soumerai, S.B., McLaughlin, T.J., & Avorn, J. (1990). Quality
assurance for drug prescribing. Quality Assurance in Healthcare, 2, 37-
58.
Strayhorn, C.K. (2006). Foster Children Texas Healthcare Claims
Study-Special Report Texas Comptroller.
Texas Dept of State Health Services (2005). Psychotropic medication
utilization parameters for foster children www.dshs.state.tx.us/
mhprograms/
psychotropicmedicationutilizationparametersfosterchildren.pdf.
Texas Health and Human Services Commission (2006). New guidelines
reduce use of psychotropic drugs http://www.hhsc.state.tx.us/
stakeholder/Sep_Oct06/psychotropic_drugs.html.
Turner, S., Nunn, A.J., Fielding, K., & Choonara, I. (1999).
Adverse drug reactions to unlicensed and off-label drugs on paediatric
wards: a prospective study. Acta Paediatr, 88, 965-968.
Zarin, D.A., Tanielian, T.L., Suarez, A.P., & Marcus, S.C. (1998).
Treatment of attention-deficit hyperactivity disorder by different
physician specialties. Psychiatric Services, 49, 171.
Zima, B.T., Bussing, R., Crecelius, G.M., Kaufman, A., & Belin,
T.R. (1999). Psychotropic medication treatment patterns among school-
aged children in foster care. Journal of Child and Adolescent
Psychopharmacology, 9, 135-147.
Zito, J.M. (1994). Psychotherapeutic Drug Manual. New York: Wiley
and Sons.
Zito, J.M., Safer, D.J., & Craig, T.J. (2008). Pharmacoepidemiology
of psychiatric disorders. In A.G.Hartzema, H.H. Tilson, & K.A. Chan
(Eds.), Pharmacoepidemiology and Therapeutic Risk Management (pp. 817-
854). Cincinnati: Harvey Whitney Books.
Zito, J.M., Safer, D.J., dosReis, S., Gardner, J.F., Magder, L.,
Soeken, K. et al. (2003). Psychotropic practice patterns for youth: a
10-year perspective. Archives of Pediatrics & Adolescent Medicine, 157,
17-25.
Zito, J.M., Safer, D.J., dosReis, S., Gardner, J.F., Soeken, K.,
Boles, M. et al. (2002). Rising prevalence of antidepressant treatments
for U.S. youths. Pediatrics, 109, 721-727.
Zito, J.M., Safer, D.J., Sai, D., Gardner, J.F., Thomas, D.,
Coombes, P. et al. (2008). Psychotropic medication patterns among youth
in foster care. Pediatrics, 121, e157-e163.
Zito, J.M., Safer, D.J., Valluri, S., Gardner, J.F., Korelitz,
J.J., & Mattison, D.R. (2007). Psychotherapeutic medication prevalence
in Medicaid-insured preschoolers. Journal of Child and Adolescent
Psychopharmacology, 17, 195-203.
Zito, J.M., Safer, D.J., Zuckerman, I.H., Gardner, J.F., & Soeken,
K. (2005). Effect of Medicaid eligibility category on racial
disparities in the use of psychotropic medications among youths.
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\
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\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.
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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\
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\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.
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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.
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\24\ Leslie LK, Kelleher KJ, Burns BJ, Landsverk J, Rolls JA.
Foster care and Medicaid managed care. Child Welfare 2003;82(3):367-92.
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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.
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\25\ Institute for Research on Women and Families. Health services
for children in foster care. Sacramento, CA: California State
University, 1998.
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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.
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\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.
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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.
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\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:
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\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\
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\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
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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.
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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\
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\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.
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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\
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\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
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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\
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\50\ Ibid.
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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\
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\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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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\
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\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.
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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\
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\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.
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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.
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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.
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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.
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\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.
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\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.
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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\
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\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.
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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\
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\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.
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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\
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\25\ Florida Statewide Advocacy Council (2003). Psychotropic drug
use in foster care. Available from: http://www.floridasac.org.
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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 . . .