Increase research on diagnosis, prevention, treatment, and
service delivery issues to address disparities in access to mental
healthcare services, especially among different racial, ethnic,
gender, sexual orientation, and socioeconomic groups.
Goal 5: Improve the infrastructure for children's mental
health services, including support for scientifically-proven
interventions across professions.
ACTION STEPS
- Encourage the health system to respond to mental health
prevention and treatment service needs through universal,
comprehensive, and continuous health coverage.
- Review both the incentives and disincentives for healthcare
providers to assess children's mental health needs, including
preventive interventions, screening, and referral.
- Provide the infrastructure for cost-effective, cross-system
collaboration and integrated care, including support to
healthcare providers for identification, treatment coordination,
and/or referral to specialty services; and the development of
integrated community networks to increase appropriate referral
opportunities.
- Provide incentives for scientifically-proven and
cost-effective prevention and treatment interventions that are
organized to support families, and that consider children and
their caregivers as a basic unit (e.g., family therapy,
home-based treatment, intensive case management).
- Create incentives and support for agencies, programs and
individual practitioners to develop and utilize science-based
strategies and interventions in community settings.
- Determine which policies and programs for children are most
cost-effective and improve access to quality care, especially
among the uninsured.
Goal 6: Increase access to and coordination of quality mental
healthcare services.
ACTION STEPS
- Develop a common language to describe children's mental
health, emphasizing adaptive functioning and taking into account
ecological, cultural, and familial context. A common language is
important to facilitate service delivery across systems.
- Develop a universal measurement system across all major
service sectors that is age-appropriate, culturally-competent,
and gender sensitive to (i) identify children, including those
with special healthcare needs, who may need mental health
services; (ii) track child progress during treatment; and (iii)
measure treatment outcomes for individual patients.
- Modify definitions and evaluation procedures used by
education systems to identify and serve children and youth who
have mental health needs. These definitions and procedures
should facilitate access to, not exclusion from, essential
services.
- Provide access to services in places where youth and
families congregate (e.g., schools, recreation centers,
churches, and others).
- Support the development of coordinated responses by
emergency medical providers (e.g., paramedics, emergency room
personnel) and community mental health service providers to
expedite appropriate treatment and/or referral for children
presenting with emergency and traumatic episodes in hospital
emergency rooms.
- Address issues of confidentiality in ways that respect a
family's right to privacy, but encourage the coordination and
collaboration among providers in different systems.
- Encourage family organizations to help family members access
information on enhancing children's mental health and the
availability of effective treatments for mental illness so that
they can make fully-informed decisions about interventions
offered.
- Include youth in treatment planning by offering them direct
information, in developmentally appropriate ways, about
treatment options. As much as possible, allow youth to make
decisions and choices about preferred intervention strategies.
- Use family advocates, such as family members with prior
experience, to assist families in interacting effectively with
complicated service systems such as healthcare, education,
juvenile justice, child welfare, and substance abuse treatment.
- Provide a mechanism for input from youth and families in
setting a national mental health agenda and in assessing
policies and programs to promote mental health services
delivery.
Goal 7: Train frontline providers to recognize and manage
mental healthcare issues, and educate mental health providers
about scientifically-proven prevention and treatment
services.
ACTION STEPS
- Engage professional organizations in educating new frontline
providers in various systems (e.g., teachers, physicians,
nurses, hospital emergency personnel, daycare providers,
probation officers, and other child healthcare providers) in
child development; equip them with skills to address and enhance
children's mental health; and train them to recognize early
symptoms of emotional or behavioral problems for proactive
intervention. Such training must focus on developmental and
cultural differences in cognitive, social, emotional, and
behavioral functioning, and understanding these issues in
familial and ecological context.
- Facilitate training of new providers by building knowledge
of child development into the existing curricula of professional
programs and encouraging on-going training opportunities across
disciplines to facilitate the development of effective
partnerships.
- Develop and evaluate multidisciplinary programs for
healthcare professionals that focus on child and family mental
health.
- Create training support for professionals,
paraprofessionals, and family advocates to keep abreast of new
developments in the field of children's mental health.
- Address the shortage of well-trained child mental health
specialists, particularly minority individuals, by encouraging
active recruitment and the provision of incentive programs by
professional organizations, federal programs, and federal
legislation, and consider the development of training programs
for mid-level providers in mental health to address inadequate
capacity.
- Encourage professional boards for mental health specialists
(e.g., psychiatry, psychology, social work, and nursing) to
require training in: evidence-based prevention and treatment
interventions; outcome-based quality assurance; competency-based
assessment and diagnostic skills; principles of
culturally-competent care; and engaging youth and families as
partners in assessment, intervention, and outcome monitoring.
- Provide mechanisms to monitor and evaluate efforts to train
new professionals, retrain existing professionals, and examine
the effectiveness of these training efforts.
Goal 8: Monitor the access to and coordination of quality
mental healthcare services.
ACTION STEPS
- Establish formal partnerships among federal research,
regulatory, and service agencies, professional associations and
families and caregivers to facilitate the transfer of knowledge
among research, practice, and policy related to children's
mental health.
- Encourage behavioral healthcare industry and service
agencies to develop and use broad-based outcome and process
measures to ensure accountability. These measures should be
relevant and meaningful, such as symptom severity, adaptive
functioning, family satisfaction, and societal/economic costs
and benefits in terms of involvement in systems such as special
education, welfare, and juvenile justice.
- Develop national quality improvement protocols that
emphasize the use of scientifically-proven practices and
evaluate the effectiveness of service systems.
- Encourage providers to inform consumers about evidence for
and against the effectiveness of proposed treatments and
services.
- Make available information on effective prevention and
treatment interventions through federal partners, professional
organizations, family organizations, and private foundations. In
addition, provide information that will allow practitioners to
evaluate the worth of promising interventions.
- Encourage industry and service agencies to develop a variety
of mechanisms for consumers to communicate their experiences and
concerns to funding agencies and purchasers of healthcare plans
(i.e., federal, state and local governments and private
employers).
- Monitor efforts to coordinate services and reduce mental
health access disparities through public health surveillance and
evaluation research.
Proceedings based on the Surgeon General's Conference on
Children's Mental Health: Developing a National Action
Agenda
Conference Summary
Background
The nation is facing a public crisis in mental healthcare for
infants, children and adolescents. Many children have mental
health problems that interfere with normal development and
functioning. In the United States, one in ten children and
adolescents suffer from mental illness severe enough to cause some
level of impairment (Burns, et al., 1995; Shaffer, et al., 1996).
Yet, in any given year, it is estimated that about one in five of
such children receive specialty mental health services (Burns, et
al., 1995). Unmet need for services remains as high now as it was
20 years ago. Recent evidence compiled by the World Health
Organization indicates that by the year 2020, childhood
neuropsychiatric disorders will rise proportionately by over 50
percent, internationally, to become one of the five most common
causes of morbidity, mortality, and disability among children.
Concerns about inappropriate diagnosis—that is, either over- or
under-diagnosis—of children's mental health problems and about the
availability of evidence-based (i.e., scientifically-proven)
treatments and services for children and their families have
sparked a national dialogue around these issues. There is broad
evidence that the nation lacks a unified infrastructure to help
these children, many of whom are falling through the cracks. Too
often, children who are not identified as having mental health
problems and who do not receive services end up in jail. Children
and families are suffering because of missed opportunities for
prevention and early identification, fragmented treatment
services, and low priorities for resources.
To address these critical issues, the Office of the Surgeon
General held a conference on Children's Mental Health:
Developing a National Action Agenda on September 18 – 19, 2000
in Washington, DC. This conference represented an extraordinary
level of collaboration among three major Federal Departments: the
Department of Health and Human Services, the Department of
Justice, and the Department of Education. The purpose of the
conference was to engage a group of citizens in a thoughtful,
meaningful dialogue about issues of prevention, identification,
recognition, and referral of children with mental health needs to
appropriate, evidence-based treatments or services. The 300
invited presenters and participants represented a broad
cross-section of mental health stakeholders, including those from
primary care, education, juvenile justice, child welfare, and
substance abuse systems. Disciplines represented included
education, pediatrics, social work, psychiatry, psychology,
nursing, public health, and faith-based practitioners. Individuals
representing associations, advocacy groups, the scientific
community, members of the healthcare industry, clinicians,
healthcare providers, families and youth attended this
conference.
This conference is one piece of a national conversation
addressing the mental health needs of our Nation's children. The
White House Conference on Mental Health, in June 1999, was
the first major public orientation to the realities of mental
illness in the United States. This was followed by the Surgeon
General's Call to Action to Prevent Suicide in July 1999, and
the release of a first-ever Surgeon General's Report on Mental
Health in December 1999. This report addressed complex issues
in mental health and included a chapter on the mental health of
children. Most recently, in March 2000, the White House held
another meeting specifically addressing the need to improve the
diagnosis and treatment of children with emotional and behavioral
conditions. Following this conference, the National Institute of
Mental Health and the Food and Drug Administration held a meeting
in October 2000, focusing on research needed to develop
psychopharmaceuticals for young children.
The agenda for this meeting was developed with extensive input
from a broad range of interested individuals. In May, public input
was solicited through the World Wide Web and mailings to over 500
individuals. Nearly 400 responses were received within a month. On
June 26, 50 individuals were invited to a formal Listening Session
with the Surgeon General to help craft the agenda for this
conference. Key issues of concern to families, service providers,
and researchers were identified, and included:
- Educating the public about mental health and illness in
children;
- Ensuring screening and early identification of children
within key service systems;
- Implementing evidence-based treatments and services;
- Providing adequate and appropriate education and training to
frontline providers;
- Engaging families in all aspects of service delivery; and
- Continuing to build the research base on children's mental
health.
The conference agenda was thus developed to address these major
concerns, with the aim of addressing the need to improve the state
of children's mental health and their families'. To initiate
national dialogue about children's mental health concerns,
conference participants listened to plenary sessions in which
leaders in the field, including youth and family members
themselves, briefly outlined key issues involved in:
- Identifying, recognizing, and referring children with mental
health needs in key services systems;
- Health services disparities: increasing access to services
through family engagement and reducing disparities in access;
and
- State of the evidence in treatments, services, systems of
care and financing: the gap between what we know and what we do.
These presentations, summarized below, provided conference
participants with information to engage in meaningful discussions
on children's mental health issues. Conference participants were
divided into 10 working groups over the two days. To help develop
consensus recommendations, participants aided by selected
facilitators and recorders, were asked to:
- Identify the barriers to appropriate identification and
recognition of children with mental health needs and the factors
that impede access to appropriate treatments or services;
- Identify major opportunities for promoting child and
adolescent mental health and for preventing risks and
antecedents associated with mental illness;
- Identify the major policies that offer opportunity for
strengthening recognition and improving access to care;
- Identify professional training needs in child and adolescent
mental health;
- Identify the major barriers to implementing evidence-based
treatments and services; and
- Develop recommendations for bridging the gaps among
research, practice, and policy.
Facilitators and recorders of each group helped group members
prioritize their recommendations, and came together each day of
the conference to synthesize the input from their respective
groups.
Consensus among the top recommendations was developed, and
these were presented to the Surgeon General and the conference
participants. Youths present at the conference formed their own
group, and presented their input directly to the Surgeon General
and the participants as well.
Conference participants also had the opportunity to directly
address Dr. Satcher, and to provide their comments. These
recommendations, together with those developed from the NIMH/FDA
meeting on Psychopharmacology for Young Children: Clinical
Needs and Research Opportunities, were used as a basis for the
development of the Surgeon General's National Action Agenda for
Children's Mental Health.
Conference Proceedings
These summary statements reflect the views expressed in the
presentations by invited speakers and discussants at the
conference.
Welcome
DAVID SATCHER, M.D., Ph.D.,
Assistant Secretary for
Health and Surgeon General
Dr. Satcher applauded the nation's unprecedented focus on
children's mental health, and in particular, the interest from the
White House and members of both the House of Representatives and
the Senate. He shared his struggle with issues of policy and
science in his role as both Assistant Secretary for Health and
Surgeon General. Dr. Satcher commended the exemplary collaboration
among the three Federal Departments: the Department of Health and
Human Services, the Department of Education, and the Department of
Justice, in this monumental effort. He briefly highlighted the
historical context for the development of this conference,
including the White House Meeting in March 2000 that launched a
new public-private effort to improve the appropriate diagnosis and
treatment of children with emotional and behavioral conditions;
solicitation of public input on children's mental health issues;
and the Surgeon General's Listening Session on Children's Mental
Health on June 26, 2000. These events helped shaped the agenda for
today's conference.
Dr. Satcher said that one of the chief priorities in the Office
of the Surgeon General and Assistant Secretary for Health has been
to work to ensure that every child has an optimal chance for a
healthy start in life. When we think about a healthy start, we
often limit our focus to physical health. But, as clearly
articulated in the Surgeon General's Report on Mental Health,
mental health is fundamental to overall health and well-being.
Just as things go wrong with the heart, the lungs, the liver and
the kidneys, things go wrong with the brain. And that is why we
must ensure that our health system responds as readily to the
needs of children's mental health as it does to the needs of their
physical well-being.
One way to respond to children's mental health needs is to move
the country toward a community health system that balances health
promotion, disease prevention, early detection and offers
universal access to care. Such a system must include a balanced
research agenda -- including basic, biomedical, clinical,
behavioral, health services and community-based prevention
research - - and it must include a re-invigorated approach to
mental health. Dr. Satcher noted that there is no mental health
equivalent to the federal government's commitment to childhood
immunization. Children and families are suffering because of
missed opportunities for prevention and early identification,
fragmented services, and low priorities for resources. Overriding
these problems is the issue of stigma, which continues to surround
mental illness.
Responsibility for mental healthcare is dispersed across
multiple settings: schools, primary care, the juvenile justice
system, and child welfare. But the first system is the family, and
the family is represented here today, and probably better
represented at this conference than any conference in the history
of a Surgeon General's report. To improve services for children
with mental health problems and their families, Dr. Satcher stated
that we need to take three steps: 1) Improve early recognition and
appropriate identification of mental disorders in children within
all systems serving children; 2) Improve access to services by
removing barriers faced by families with mental health needs, with
a specific aim to reduce disparities in access to care; and 3)
Close the gap between research and practice, ensuring
evidence-based treatments for children.
The goal of this conference was to enlist the help of all 300
invited participants in developing specific recommendations for a
National Action Agenda for children's mental health. This
conference represented an unparalleled opportunity to make a
difference in the quality of life for America's children and
adolescents. While the task ahead will not be easy, he emphasized
the need to take advantage of "golden opportunities" which can
often be "disguised as unresolvable problems."
STEVEN E. HYMAN, M.D.,
Director, National Institute of
Mental Health
Dr. Hyman stressed how important Dr. Satcher's focus on mental
health issues has been. Dr. Satcher has devoted much of his time
to mental health, he said, and it has made an enormous difference.
When the Surgeon General of the United States recognizes the
centrality of mental health to all of health, there is an enormous
change throughout the country. It is difficult to imagine anything
more important than the mental health of our children.
There is a need to recognize that children are engaged in a
process of development. What does it mean if a child is unable to
attend in school, spends years sad, anxious and unable to learn?
Can children regain lost ground if untreated for two, five, or
eight years? We have spent so much time, appropriately so, on the
physical health of children. In education, cognitive development
has been emphasized. In contrast, social and emotional school
readiness has been pushed under the rug, or perhaps lost in debate
over what we really know, who is responsible for what, and what
the impact is from parents, peers, and the community. In the
meantime, our understanding of the social and emotional factors
that provide for school readiness and for healthy development has
lagged. More research is needed, but at the same time, much is
known. There is a terrifying gap between what we do know and how
we act, between the services we could offer and those we do offer,
and between what families can afford and what families can
access.
Stigma is an important factor. Parents are fearful about
bringing the social and emotional difficulties of their children
to the attention of medical professionals, perhaps afraid they may
be blamed. Children are sometimes directly stigmatized by the
cruelty of classmates. This is stigma squared. Dr. Hyman reminded
conference participants that we are working against a politicized
environment rather than in a purely medical environment. There are
many people who would like very much to have a referendum on the
use of psychotropic drugs in children, he said. Yet, the real
issue is appropriate diagnosis and treatment of our children. Do
we have access to those treatments and to that care? What are the
qualifications of the people to whom we bring our children? Have
they been educated in these areas? How thorough is the
investigation into what might be going wrong in a child? Does the
practitioner have the training, the time, the financial resources
to interact with the child, to talk to the family, to engage the
family, to talk to the school, the daycare centers, and really
understand what is going on? Do we have, too often, because of
problems of access and problems of finance, an emergency room or a
crisis mentality? In this conference, we have the opportunity to
focus on the core issues that are going to affect the health of
children.
BERNARD S. ARONS, M.D.,
Director, Center for Mental
Health Services
Dr. Arons described the Center for Mental Health Services,
which was formed eight years ago and whose mission is to improve
the delivery of mental health services. The center, through block
grants and Knowledge, Development and Application (KDA) grants,
has funded projects on a wide variety of issues, including
homelessness and job performance. KDA grants were used to pioneer
systems of care for children with serious emotional disorders—a
concept that changed the paradigm for delivering services to
American children and their families.
The essential role of families in the care of those with mental
illness is critical. The Center hammers away at barriers to care,
Dr. Arons said. But progress is slow. Access and cultural
competence are important issues. The center is trying to construct
a bridge between science and treatment and back again. Prevention
is critical. There is a critical need to intervene sooner. Dr.
Arons provided an analogy of a surfer, treading water out in the
ocean waiting for the right wave to come along. That wave is here,
particularly for children's mental health, he said.
Each of the participants in this conference has been carefully
chosen because of contributions he or she has made to the mental
health of children. Many American children and families are not
getting the help they need. What should be done to improve the way
children with mental illnesses are served? The conference
organizers look forward to the participants helping to move
children's mental health to the next steps.
Panel 1: Identifying, Recognizing, and Referring Children with
Mental Health Needs
CHAIR: Mary Jane England, M.D., Washington Business Group on
Health
This panel approached the prevalence of mental health need
from a variety of perspectives, revealing the broad picture of
unmet needs, health disparities, and policy implications. It
examined the discrepancy between need and availability of mental
health and substance abuse services, integrating the multiple
systems involved (e.g., juvenile justice, child welfare, substance
abuse, special healthcare, etc.). It also weighed the pros and
cons of labeling children with disorders, comparing diagnosis
versus functional impairments from a developmental perspective.
The panel also answered critical questions on how mental health
needs are identified or recognized in various systems and the
barriers to recognition. For example, how well do these systems
identify and refer children with recognized mental health needs?
What linkages do or do not exist among these systems? The various
speakers provided national data on identification, recognition,
and referral within these systems and identified, where
appropriate, federal or state policies that address recognition,
linkage, and treatment services.
IDENTIFICATION OF MENTAL HEALTH NEEDS
David (Dan) R. Offord, M.D.,
McMaster
University
Dr. Offord presented a framework for why the nation needs to
address mental health needs in children and adolescents. The
burden of suffering of children with mental disorders is
significant. In the United States, children's (ages 1-19)
emotional and behavioral problems and associated impairments are
most likely to lower their quality of life and reduce their life
chances. No other set of conditions is close in the magnitude of
its deleterious effects on children and youth in this age group.
Children with these disorders are at a much greater risk for
dropping out of school and of not being fully functional members
of society in adulthood. This burden of disease includes the
prevalence of mental illness, morbidity, and cost. All sectors of
society are involved. Prevalence estimates range from 17.6 to 22 %
(Costello, et al., 1996) in one study, and 16 % in another
(Roberts, et. al., 1998). Furthermore, child mental disorders
persist into adulthood; 74% of 21 year olds with mental disorders
had prior problems. The cost to society is high in both human and
fiscal terms.
To ensure their businesses will flourish, the business
community understands that they need to reduce the casualty class,
that is, children with early-breaking emotional and behavioral
problems and associated difficulties. There is a need to come up
with programs to raise the quality of life for large groups of
children. Criteria for child psychiatric disorders need to include
not merely emotional or behavioral abnormality, but should
consider functional impairment as well. The frequency of mental
health problems is highest among the very poor, but most children
with mental health problems are from the middle class. Important
issues to consider are risk factors and protective factors, as
well as comorbidity of disorders, which is very common.
Patterns of service use are not well understood. According to
the Great Smoky Mountains Study, one in five children used
specialty health services in the last three months, and early
termination of treatment is a problem (Costello, et al., 1996).
Reasons for underutilization are unclear. Possible reasons may
include stigma, cost, and parental dissatisfaction with services.
More research is needed to understand the reasons for
underutilization and to increase compliance. It is clear that
services for children's mental health disorders are not
underutilized. In fact, there are long waiting lists for these
services. There are, however, two issues. First, specialized
children's mental health services alone will never be sufficient,
by themselves, to reduce the tremendous burden of suffering from
child mental disorders. What is needed, in addition to effective
clinical services, are effective universal and targeted programs.
Hopefully, this strategy will reduce the size of the population
needing clinical services. All three intervention
strategies—universal, targeted and clinical—should operate in the
context of a civic community. Since clinical services are
relatively scarce and very expensive, they should be targeted to
children who need them the most, and are most likely to benefit
from them.
Suggestions for a national agenda include: (1) Ensuring a
community focus in developing the national action agenda; (2)
Using a population approach; (3) Creating common intake
mechanisms; (4) Collecting data, not just at the national and
state levels, but at community levels as well; (5) Utilizing
evidence-based interventions and keeping frontline workers up to
date; (6) Using graded interventions (e.g., trying parent training
as an inexpensive start); and (7) Underlining the importance of
the first five years to ensure that when children start school,
the race is fair.
Senora D. Simpson, Dr. PH.,
Family
Member
Dr. Simpson provided a parent's perspective on the state of
children's mental health in the United States. Every program
professes to value parents, but with a caveat: "Don't get too
involved or provide too much input, for we are after all the
experts." Multiple barriers to access and communication
difficulties among the multiple systems exist; parental
involvement, family satisfaction, preferences and quality of life
are often disregarded. There are a plethora of programs, laws,
regulations, federal and state mandates, but many have conflicting
or rigid rules, gaps in services, and arbitrary eligibility
requirements that exclude treatment for comorbid problems (e.g.,
substance abuse). Rigid, invalid, outdated and culturally
incompetent assessment tools obstruct early identification and
treatment. Stigma continues despite congressional efforts.
Quality, evidence-based treatment is limited to a few
narrowly-defined populations or is not available. The sense is
that profitability drives treatment decisions, not model practice.
"In reality, humane services are often not available if one's
pedigree is not acceptable." Very often the most in need do not
get the services. Real parental involvement, and attention to
family satisfaction, family practice and quality of life is often
left to chance.
Dr. Simpson noted that in her experience of dealing with
several generations of family members with mental health problems,
it is no easier to get help in the 1990s than in the 1960s.
"Besides, it costs more now to get a worse outcome." She noted
limited change in practice with mandated cost containment.
Suggestions for change include: (1) Implementing evidence-based
practice in mental health; (2) Charging federal governmental
agencies to review legislation and regulations which impact early
identification, referral, comprehensive and coordinated treatment
for children's mental health; the goal of this review is to
resolve duplications, and ameliorate conflicts and gaps in
treatment services; (3) Moving beyond basic research into applied
research, in particular normative and evaluation research; (4)
Engaging professional organizations and educators to develop
standardized models of higher education to produce high quality
care providers; and (5) Increasing accountability for outcomes
that are relevant within a broader context.
PRIMARY CARE AND IDENTIFICATION OF MENTAL HEALTH
NEEDS
Kelly J. Kelleher, M.D., M.P.H.,
University
of Pittsburgh
Dr. Kelleher reviewed practice in primary care, discussed
efforts to improve identification, and considered policy options
to improve the recognition and referral of children in primary
care with mental health needs. Each year, there are more than 150
million pediatric visits to primary care providers in the United
States (NAMCS, 1998). Primary care practitioners prescribe the
majority of psychotropic drugs, and they often counsel families
about behavior and emotional problems and disorders. Still, some
surveys suggest that families do not view this counseling from
family doctors as mental health services, even though the
physicians do. Most children with mental health problems see their
primary care providers rather than mental health specialists. For
many preschool children, such visits are their only contact with
any major delivery system. Parents trust these primary care
providers more than others. Yet, many barriers impede the delivery
of effective mental healthcare. For example, the average visit is
only between 11 and 15 minutes (NAMCS, 1988; CBS, 1997).
One major challenge is the disparity between what parents
report versus what physicians report as psychiatric problems in
children. In at least one large study, primary care physicians
identified about 19% of all children they see with behavioral and
emotional problems. Yet that overlapped by only 7% with what
parents identified as problems. Girls and young children are less
likely to be identified than boys. African American and Hispanic
American children are identified and referred at the same rates as
other children, but they are much less likely to actually receive
specialty mental health services or psychotropic medications. This
follow-through, or lack thereof, is very often linked to trust in
the doctor, the history of that relationship, as well as
demographics and insurance status.
Most referrals from primary care physicians for behavior
problems are for child psychologists. Significant barriers to
referral include lack of available specialists, insurance
restrictions, and appointment delays. More than two thirds of
primary care clinicians report appointment delays, with average
time to appointment with a specialist being three to four months.
Of those patients who were referred, 59% had zero visits to the
specialist; only 13% averaged one or more visits a month in the
follow-up period of six months. In short, an increasing number of
problems (15-30%) are being identified by primary care providers,
but rates of recognition (48-57%) are still low and connections to
mental health specialists are difficult.
Dr. Kelleher suggested more efforts in the following areas: (1)
Train primary care practitioners; this seems to have no impact on
management practices except for those who complete at least a
two-year fellowship training. Nonetheless, the training of primary
care physicians also needs to be expanded to include more mental
health issues. (2) Screen for disorders in primary care; however,
the effectiveness of screening depends on the availability of
assistance for scoring screening protocols and the availability of
treatment services. (3) Link specialty services through
consultation-liaison services, co-location with mental health
services, and use of behavioral specialists.
Public policy options include: (1) Payment coordination to
ensure reimbursement for behavioral services by primary care
providers, care coordination, parallel incentives for Managed
Behavioral Health Organizations, Managed Care Organizations, and
Primary Care Practitioners; (2) Data coordination through the
Substance Abuse and Mental Health Administration (SAMHSA),
Maternal and Child Health (MCH) Block grant requirements, Medicaid
waiver requirements for sharing data, and state contract mandates,
so that systems can track families and use reasonable case
management across populations; (3) Accountability standards for
screens, referrals, and treatment; and (4) Expansion of the Early
and Periodic Screening, Diagnosis, and Treatment (EPSDT)
program.
SCHOOLS AND IDENTIFICATION OF MENTAL HEALTH NEEDS
Steve Forness, Ed.D.,
University of
California, Los Angeles
Dr. Forness pointed out issues specific to mental health needs
within the school system. Children with mental health needs are
usually identified by the schools only after their emotional or
behavioral problems cannot be managed by their regular classroom
teacher. A series of parent conferences, discipline referrals, or
trial interventions in the regular classroom may precede formal
referral to special education. Under the Federal Individuals with
Disabilities Education Act (IDEA), such children should be
formally evaluated and, if found eligible, either placed in a
special classroom or provided special assistance in their regular
classrooms. The five largest categories of special education
include: learning disabilities (LD), speech and language handicaps
(SL), mental retardation (MR), and other health impaired (OHI) and
emotional disturbances (ED). Learning disabilities and speech and
language handicaps account for the majority of the 11% of school
age children in special education. Fewer than 1% of children are
found eligible in the school category of emotional disturbance.
Compared to children in the two largest categories of special
education (LD and SL) who are mostly mainstreamed (over 80%),
fewer than half the children under the ED category are
mainstreamed.
A study done by Dr. Forness and a colleague in California
showed that the schools are doing a very poor job of identifying
children, or at identifying them soon enough. Among
thirteen-year-old children from 12 special classrooms for children
with emotional disturbance, diagnoses such as depression
(approximately one third), attention deficit hyperactivity
disorder (approximately one fourth), and post-traumatic stress
disorder secondary to abuse were made. Before these children got
into special education, parents reported recognizing a problem at
a mean age of 3.5. Outside agency records (e.g., discipline
referral, prescription medication) indicated problems at a mean
age of 5 (i.e., kindergarten), and the first documented
intervention involving some sort of pre-intervention was at age
6.5. The first eligibility for special education was at about 7.8
years (i.e., toward the end of second grade), and in more than 50%
of the cases, these children were placed in the category of LD,
not in the category of ED. These children finally got the right
services at age 10.
In another long-term study of about 3,700 children done with
his colleagues at the University of Alabama in Birmingham,
assessments were conducted and mental health needs were identified
using two diagnostic analogs of risk for emotional or behavioral
disorders. Here again, the vast majority of these identified
children did not receive special education services. Among those
who did, a small minority were identified in the category of ED.
Most were primarily categorized under the LD with a few in the SL
category, even when controlling for those kids with comorbid
diagnoses of learning, speech or language problems.
Dr. Forness pointed out that one of the major barriers to
identification lies in the seriously flawed definition of ED. As a
consequence, many children in need are deemed ineligible because
of technicalities in the school definition of ED, and a
significant number appear to be misidentified in other categories
of special education reserved for children with primary learning
or language disorders. This may be due to school professionals' or
parents' attempts to avoid the stigma of mental health disorders
or problems in appropriate detection or recognition of such
disorders. In either case, under-identification or
misidentification may also make it less likely that such children
will be referred to other agencies for needed mental health
services. Cost-efficient systems for school mental health
screening and methods for training regular and special education
teachers in early detection of mental health disorders are
available, but seldom used effectively, if at all, in actual
school practice.
Suggestions from Dr. Forness include: (1) Train school
professionals, especially classroom teachers, to recognize early
symptoms of emotional and behavioral disorders; (2) Modify the
school definition of mental health disorders, which is more
restrictive than definitions for other school categories; and (3)
Develop a more proactive identification process for mental health
disorders in school, in which children are screened for emotional
or behavioral disorders early in the school years, just as they
are screened for visual acuity or other health problems.
PRESCHOOL AND IDENTIFICATION OF MENTAL HEALTH
NEEDS
Neal Halfon, M.D., M.P.H.,
University of
California, Los Angeles
Dr. Halfon noted in the past several years that there has been
an increasing policy focus on young children with two White House
conferences as well as several foundation and government reports,
which all highlight the importance of early childhood on brain
development. An important finding of these reports is that
plasticity decreases as people get older. He then used this fact
to create a context for his further remarks.
Dr. Halfon suggested that the public policy context for
understanding the development and identification of mental health
needs in children must consider a couple of issues. First, from a
public policy standpoint, he pointed out the contradiction in our
current public investment in human capital (increasing social
spending with age) with data portraying changes in brain
plasticity, which demonstrates decreasing plasticity over the life
course. What he suggested is that we are spending too little too
late and missing an important opportunity to invest early. From
the standpoint of prevention, early identification and treatment
of mental health problems, we really need to talk about a new
investment strategy in children's well-being.
The second contextual issue relates to the need to view things
from a developmental perspective. Drawing on a life course health
development perspective, he suggested that experiences during
sensitive periods of development have important long-term impact
over the life course. Dr. Halfon introduced the notion of five
developmental T's: trajectories, timing, transactions, transitions
and turning points to highlight important implications for early
identification and intervention. He suggested that developmental
trajectories for mental and behavioral function depend on the
timing of experience and the character of the transactions between
children and their caregivers. He also suggested that during
transitions and turning points, such as the move from family care
to childcare or childcare to preschool, children need extra
support.
What do we know about young children? From a limited number of
studies, mental health disorders in young children show similar
prevalence rates to those found in older children. The catch is
that you have to look more carefully to find them. Moreover,
studies indicate there are high rates of stability of disorders,
especially for externalizing disorders that include disruptive
behaviors and more aggressive kinds of behavioral problems. We
also know there are sub-threshold behavioral problems that are
identifiable and predictive. Increasingly, research has shown that
a number of biological markers that can be identified early in a
child's life have predictive power for the development of future
problems. However, a majority of problems go unrecognized and most
children do not receive treatment early in their life unless these
problems are severe.
There are several types of risk factors for the development of
mental health problems. There are a number of social factors that
have been associated with the development of mental health
problems, and poverty has been demonstrated to be an important
risk factor in the younger years. National data indicate that 22%
of children between the ages of 0 to 5 live in poverty, which
represents a sizeable exposure to a potent risk factor. There are
also biological factors (prematurity), family factors (resources,
capacity, stresses and supports), and parenting issues
(responsiveness and sensitivity of caregivers, and mental health
of caregiver) that pose risks.
In addition to highlighting the risk that many children face,
evidence indicates that we are missing many opportunities for
prevention and intervention. Few young children are recognized to
have mental health and behavioral problems and most do not receive
appropriate and timely treatment. Dr. Halfon suggested that we
have a major gap between research and practice. Thus,
interventions that have been shown to be effective are not widely
utilized. We also have no national data on prevalence, trends and
access, and quality of services that are specifically focused on
young children. The only national health data source available is
the National Health Interview Survey, and it is very difficult to
get any reliable estimates for children under five years of age
from this data source. Dr. Halfon also suggested that our
deficiencies in collecting data on prevalence, impact, and
provision of appropriate services were imminently correctable. A
number of effective preventive mental health services for young
children exist, such as home-based, center-based programs and
community-wide programs, but these are not widely applied.
In terms of pediatric practices, a national study conducted by
Dr. Halfon found that routine developmental and psychosocial
assessments of young children and their families using
standardized instruments are rarely used in pediatric practices,
and when psychosocial screening is conducted by pediatric
providers, it is associated with available community resources.
Pediatricians do not screen for maternal depression, an important
risk factor for the development of childhood mental health
problems, if there is no place to send those mothers for
appropriate treatment. Another limitation of pediatric primary
care relates to the training of pediatricians to conduct
psychosocial screening and the importance of developing new tools
to make such screening more effective and efficient.
Suggestions for public policy include (1) Create a context for
child mental health policy and one that looks at how we invest in
the lives of young children; (2) Include mental health prevention
and the promotion of socio-emotional development in state-wide
early childhood initiatives; (3) Revolutionize pediatric care,
including new assessment measures and protocols, new standards and
guidelines, local-area developmental-resource networks that
include services for entire families, appropriate reimbursement,
quality measurement and accountability; (4) Institute more
appropriate national data on families with young children either
through the expansion of the National Health Interview Survey or
the new Maternal Child Health Bureau's proposed survey; and (5)
Conduct systematic monitoring of access and quality specifically
around prevention services, treatment services, and community-wide
services.
Suggestions for research include (1) Development of
longitudinal population studies of developmental determinants of
psychopathology; (2) Expansion of integrative clinical research on
gene-environment interactions; (3) Intervention and practice
research; and (4) Prevention research, at a community level, which
takes advantage of community systems, coordinating efforts across
the National Institute of Mental Health, the Maternal and Child
Health Bureau, and the Centers for Disease Control.
CHILD WELFARE AND IDENTIFICATION OF MENTAL HEALTH
NEEDS
John Landsverk, Ph.D.,
Children's Hospital,
San Diego
Dr. Landsverk reviewed the mental health needs specific to the
foster care system. Research studies over the past two decades
have firmly established that children in foster care represent a
high-risk population for maladaptive outcomes, including
socio-emotional, behavioral, and psychiatric problems warranting
mental health treatments. Recent studies in California, Washington
State, and Pennsylvania suggest a high use of mental health
services by children in foster care, largely due to linkage to
Medicaid funding. But, it is important to note that foster care is
not a mental health system.
The number of children in the welfare system can be best
estimated from the number of children in foster care. 1995
estimates place that number at 482,000 to 710,000. This number
should then be multiplied two or three times to account for
children who are reported to child protective services and
children receiving in-home services. Entrance into this system
occurs when a child is maltreated; neglect is the most common
reason (50-60%), followed by physical abuse (20-25%), sexual abuse
(10-15%), and physiological/medical neglect (5-10%). The largest
group is a young population, ages 0 to 5, poor, minority, in
female head of household homes. This young group enters the system
at roughly twice the rate of children ages 6 and older. Foster
care children represent an extremely high-risk population. Half of
the children (ages 0 to 17) in foster care have adaptive
functioning scores in the problematic range; among children ages 0
to 6, 50-65% are in the problematic range in terms of
developmental status; among 2 to 17 year olds, 50-60% have
behavior problems; and among the 6 to 17 year olds, about 40% meet
the criteria for any diagnosis with moderate impairment.
In terms of mental health service use, children in foster care
use these services up to fifteen times more than other children in
the Medicaid system. Foster children with behavioral problems are
most likely to be seen. Data also show that children with a
history of sexual abuse are three times more likely to receive
mental health services, while children with a history of neglect
are only half as likely to receive treatment. African-American and
Hispanic children are least likely to receive services, and they
need to display more pathology to be referred for mental health
services. Developmental services are accessed significantly less
than would be expected based on the high rate of developmental
problems observed.
Despite the large mental health service utilization in the
child welfare system, the use of evidence-based treatments is very
low, and the dominant focus of treatment is on sexual abuse and
somewhat on physical abuse. In spite of the clear evidence that
the long-term effects of neglect are equally as damaging, there is
almost no attention to this issue. Little is known about how
effective services are for children involved in the child welfare
system who remain with their biological parents. Promising
evidence-based interventions include (1) Identification of
developmental problems (Leslie, San Diego). (2) Foster Parent
Management Training (Chamberlain, Oregon and San Diego). (3)
Multi-systemic treatment for Physically Abusive Parents (Swenson,
South Carolina). (4) Attachment intervention for foster parents
(Dozier, Delaware). (5) Treatment Foster Care (Farmer, North
Carolina). (6) Culture/Climate of Case Worker Teams (Glisson,
Tennessee).
Suggestions for policy initiatives: (1) Expand use of the EPSDT
Program to include comprehensive assessments; given the rates of
problems, comprehensive assessment, rather than screening for
problems, is the key issue. (2) Expand the use of the State
Children's Health Insurance Program (SCHIP) funding streams to
improve use of systematic assessment and evidence-based
treatments.
JUVENILE JUSTICE AND IDENTIFICATION OF MENTAL HEALTH
NEEDS
Linda A. Teplin, Ph.D.,
Northwestern
University Medical School
Dr. Teplin discussed what can happen when the primary care,
school, child welfare and the larger mental health systems fail.
She suggested that changes in systems (e.g., Medicaid reductions,
rise of managed care) have resulted in fewer children getting
treatment for mental health problems. Consequently, many children
are falling through the cracks and these kids are ending up in the
juvenile justice system. Poor children, minority children, and
children with comorbid disorders are disproportionately
represented.
The literature suggests high rates of alcohol, drug, or mental
(ADM) disorders in the juvenile justice population. Yet there are
few empirical studies. There is even less information on ADM
comorbidity among juvenile detainees, although related literature
suggests rates may also be high. Dr. Teplin presented data from a
study from Chicago that looked at the prevalence of mental
disorders among children in a typical detention center. Among a
sample of 1,829 children (650 girls), two thirds tested positive
for drugs (although only 6% tested positive for drugs other than
marijuana). Nearly three quarters of the females and over two
thirds of the males had one or more psychiatric disorders. Nearly
20% of the sample had an affective disorder; rates were higher
among females (27.5%). Comorbidity is common. For example, over
two thirds of youth with an affective disorder also had substance
abuse/dependence (alcohol, drug, or both). In addition, mortality
is high. To date, 33 youth (1.8% of the sample) have died, all
violently.
Based on these findings, the implications for policy and
research are multiple. Correctional healthcare, particularly among
juveniles, is a growing national public health problem. The
magnitude of mental health service needs far exceeds current
resources. Dr. Teplin and colleagues are doing follow-up
interviews with the children in the study. "We are struck by the
enormous proportion of our girls, only 10 to 17 at baseline, who
are holding babies during the follow-up interview," she said.
"Only if we provide services, innovative services geared towards
the mental health needs of these kids, can we hope to break the
cycle of disorder."
Recommendations to address mental health needs in the juvenile
justice system include: (1) Reduce the number of children in the
juvenile justice system by improving identification and services
in other systems—primary care, schools, welfare and the larger
mental health system. (2) Conduct research into understanding
patterns of ADM comorbidity. It is central to providing effective
interventions for high-risk youth both in the juvenile justice
system and in their communities. (3) Take steps to improve mental
health services for the children in the juvenile justice system.
Adequate services would include screening and treatment, with
attention paid to gender differences and comorbidity.
DISCUSSANTS
Donna Gore Olsen,
Indiana Parent
Information Network
Ms. Olsen is a family member who represents several family
advocacy groups, including the Family Voices and the Indiana
Federation of Families. She emphasized the importance of quality,
family-centered mental health services based on her own family's
experience and those of other families. Ms. Olsen expressed
concern that families' reports of problems, which they frequently
recognize before anyone else, are often ignored or minimized. She
urged the providers to talk to families and listen to their needs,
be they related to chronic illness, blended families, single
parenthood, or serious emotional needs. She called for
family-centered programs that include the whole family in
counseling services as part of the plan of care, pointing out that
many of the programs tend to be only child-centered. Further, she
pointed out the need for accessible programs, which sometimes
means in families' homes, and programs that are coordinated across
the multiple disciplines involved in a child's care. Often,
confidentiality is used to prevent this necessary collaboration.
Anecdotally, Ms. Olsen reported that the reason most families do
not return for therapy appointments is because they have not
received the practical information they need and want. Finally,
she highlighted a neglected area, namely, transition programs to
ease the stress of transition from pediatric to adult services for
children with special healthcare needs.
Glorisa Canino, Ph.D.,
University of Puerto
Rico
Dr. Canino highlighted a common theme in the presentations thus
far: the lack of access to mental health services in different
settings, particularly for minority children. The stigma of mental
health problems is far greater for minority children. Some reasons
for this disparity include lack of cultural competence of mental
health providers and lack of outreach programs. The consequence is
that many children end up incarcerated; many of these are minority
children. Other important issues that need to be addressed include
family burden, where family members are left caring for these
problems on their own; the long-term consequences of untreated
mental illness (i.e., adult psychopathology); and the impact of
cost containment on service delivery.
Lucille Eber, Ed.D.,
The Illinois
Emotional/Behavioral Disabilities Network, Riverside,
Illinois
Dr. Eber noted the important role schools can play in
identifying and intervening with mental health problems in
children. However, schools are not experiencing much success, even
with the small percentage of children identified. A primary issue
is the lack of infrastructure in schools for providing proactive
behavior supports around all students. Without universal
conditions to improve behavior and academic learning for all
children, effective interventions are less likely for the children
with the greatest needs. A lack of comprehensive support systems
and training for teachers and administrators has led to reactive,
punitive, control/ containment interventions that do not work to
establish positive behaviors and improve learning. She cautioned,
"Identification without quality intervention leads to chaos." She
urged a rethinking of mental health models for schools. This
includes moving beyond special education as the source of
intervention and using mental health resources in a different
manner than traditional clinical models. A comprehensive system of
universal (school-wide), targeted (for at-risk students) and
intensive and comprehensive interventions for those with complex
problems is needed. This requires establishing more proactive host
environments in the school. She commented on the need to change
the current Emotional Disturbance definition, the need for
increased training and staff development, and the need to change
state certification requirements in order to impact the university
training for teachers and administrators. New roles for social
workers and school psychologists should be considered so that they
can more effectively support students, teachers and families and
create partnerships with the mental health, child welfare and
juvenile justice systems.
Velma LaPoint, Ph.D.,
Howard
University
Dr. LaPoint advocated a holistic, ecological approach to
children's mental health in research, interventions, policy, and
advocacy. She concurred with Dr. Senora Simpson about the need for
professionals to meaningfully and proactively involve families in
identifying children's mental health needs, developing,
implementing, and evaluating interventions. Mental health
educational materials that are linguistically and culturally
relevant for families are also needed.
While Dr. Forness focused on children labeled as in need of
special education, Dr. LaPoint focused on all students attending
public schools. She stated that teachers need pre-service and
continuing professional development on how to recognize indicators
of children's mental health problems. Teachers need to be aware of
new and continuing challenges to children's mental health (e.g.,
parental divorce or incarceration, advertising and marketing of
targeted youth products, gun violence) and school systems need to
support teachers by having high quality referral and school-based
treatment systems, where appropriate, for children showing signs
of mental health problems.
Equally important are issues of how school organization,
classroom practices, and other related factors, including
teachers' personalities and management skills, can influence
children's behavior at school. There is also a need to go beyond
the common signs of mental health problems and use indices such as
chronic absenteeism that may be related to serious child mental
health problems. A broad assessment of children's social
competence, including their assets and support networks, is needed
by educators so that programs can be developed, implemented, and
evaluated to enhance their academic achievement and social
competence. Adequate district, state, and/or federal funding is
needed to provide schools with adequate counseling and related
support services. There is a need to reduce the student-counselor
ratio and to make better use of school counselors and
psychologists. Student-counselor ratios across the country can
range from 300 to 600 students to one counselor, with higher
ratios in high schools and large urban school districts, generally
serving low-income students of color. School counselors are often
not engaged in counseling tasks, and may spend a great amount of
time on bureaucratic tasks. School psychologists and educational
psychologists may have tasks that primarily focus on student
problem identification and placement as opposed to developing and
evaluating new and creative educational programs that can both
prevent and treat students showing signs of mental health
problems. School systems need to revisit the roles of social
workers and nurses who can also play a major role in developing
mental health prevention and treatment programs.
Dr. LaPoint went further than Dr. Teplin to say that a number
of children in the juvenile justice system are in fact,
intentionally programmed or tracked to the juvenile justice
system. Some research suggests that poor children and children of
color are tracked into the juvenile justice system while their
white, middle-class counterparts are diverted to health and mental
health systems resulting in a two-tiered child mental health
service delivery system. There is no need for this kind of service
delivery system given the vast economic wealth of this country.
The issue, for all stakeholders in our communities and society,
including service providers and elected and appointed officials,
is to have the political will to serve all children with equity in
attitudes, practices, and resources.
Panel 2: Health Service Disparities: Access, Quality, and
Diversity
CHAIR: Spero M. Manson, Ph.D., University of
Colorado.
ACCESS, BARRIERS, and QUALITY
Pathways into, through, and out of service systems are
issues of critical importance when addressing access to care,
adequacy or appropriateness of care, as well as quality. This
panel addressed these issues examining the impact of race,
ethnicity, and cultural attitudes.
David T. Takeuchi, Ph.D.,
Indiana
University
Dr. Takeuchi discussed the importance of race as a separate and
independent factor in children's mental health status, as well as
access to and quality of care. Over the past two decades, it has
been common to advocate for a more universal approach to resolving
the disparities found among racial groups. Despite one's position
regarding whether race has or has not declined in significance in
American society, an advocacy for policies that attempt to reduce
socio-economic status (SES) differentials is seen as a more
effective public policy strategy to gain acceptance among all
racial groups and, equally important, policy makers.
While this approach is popular and well meaning, it tends to
ignore an evolving body of research that finds race to have a
strong effect on mental health variables, independent of SES. For
example, a recent study assessing health outcomes for 50 states
found a strong association between racial composition and health.
The greater the minority composition, the poorer the child health
profiles. When race was included in analytical models, income and
equality did not have a significant association with child health
outcomes. Another significant variable linked to improved child
health outcomes was the willingness of states to fund social
welfare programs. These analyses suggest that simply focusing on
income inequality will not resolve racism and its consequences.
Racism is a continuous problem and creates a social environment
characterized by alienation, frustration, powerlessness, stress
and demoralization, all of which can have pernicious consequences
on mental health. There are programs that are trying to make
health systems more equitable through education, and attempting to
reduce stereotypes and prejudice by providing information about
different racial groups. Research indicates, however, that
individuals who have preexisting racist beliefs may actually have
these beliefs reinforced through such educational programs.
In order to address ethnic and racial inequities in children's
mental healthcare, racism must be viewed in a broader context,
focusing on institutional racism and the racial hierarchy of
society and its systems, including healthcare. It is unclear how
to do this, but two examples to consider would be Native
Americans' building casinos to address economic inequity; and
Native Hawaiians' current effort to achieve sovereignty. These are
two natural situations in which it can be seen how health outcomes
will be influenced.
Margarita Alegría, Ph.D.,
University of
Puerto Rico
Dr. Alegría discussed challenges in advancing equity in mental
healthcare for children of color. She presented three arguments
for increased focus on racial and ethnic differences. First, race,
ethnicity and culture of children play a major role in shaping the
care provided to them by health institutions. Racial, ethnic and
cultural differences influence the expression and identification
of the need for services. Studies have shown ethnic and racial
differences in youths' self-reports of problem behaviors,
caregivers' value judgments of what is normative behavior, and
caregiver expectations of the child. Ethnic and racial bias in who
gets identified, referred and treated within certain institutions
has also been documented. For example, African American youth are
more frequently referred for conduct problems to corrections
rather than psychiatric hospitals, even with lower or equal
measures of aggressive behavior. Quality of care is also impacted.
For example, ADHD is less often treated by medications in minority
groups than in white populations. There is also increased
probability of misdiagnoses among minority individuals, affecting
subsequent care.
Second, there are challenges in identifying the mechanisms by
which ethnicity, race, and culture account for disparities in
behavioral and emotional problems and service delivery.
Understanding these mechanisms has important implications for how
to intervene correctly. Factors that mediate such challenges may
be related to lack of early detection by providers and parents;
untrained and culturally insensitive providers; and lack of parent
and provider knowledge of efficacious treatments. For example,
Latino youths have the highest rate of suicide, yet they are less
likely to be identified by their caregivers as having problems.
Disparities in services may be due to different barriers such as
insurance status and settings where mental healthcare is
delivered. Minority children tend to receive mental health
services through the juvenile justice and welfare systems more
often than through schools or special settings.
Third, efforts to address racial and ethnic disparities in
mental health and service delivery are constrained by profound
socio-environmental, institutional, and market forces. For
example, managed care, by targeting medical necessity, may be
constrained in obtaining the complexity of funding streams that
are necessary to service minority children in the schools,
juvenile justice settings or welfare agencies. Expansion of
Medicaid eligibility for near poor families may not prove
sufficient to increase mental health service usage, if it is not
tied to increased provider availability and provider payment
incentives to treat minority populations within depressed
inner-city communities. Thus, a critical analysis of how
residential, institutional, and market policies may create
disparities is needed, and more importantly, how these policies
are implemented in ways that result in disparities. There is a
need to address these disparities by moving beyond the healthcare
sector, examining neighborhoods where minority children live
(areas of economic disadvantage, concentration of violence in
certain areas), addressing the institutions with which minority
children interact (i.e., the referral bias in the various
systems), and addressing the role of managed care and the lack of
culturally competent providers in the various systems.
Suggestions to address these disparities include: (1) Ensure
that efforts focus not only on equalizing access to treatment, but
also on equalizing outcomes of care; (2) Aggressively monitor
institutional progress towards an equitable and compassionate
system of mental healthcare for children of color; and (3) Move
beyond policy interventions in the healthcare system to more
socio-educational approaches, where government agencies are not
agents of control but agents of support.
Kenneth B. Wells, M.D.,
M.P.H.,
UCLA/RAND
Dr. Wells presented new preliminary data from three national
surveys on access to specialty mental healthcare. The findings
demonstrated high levels of unmet need for specialty care for
children and adolescents and substantial ethnic disparities in
access to such care. Detailed findings will be presented in a
forthcoming article. Dr. Wells also drew attention to key issues
in formulating public policy to address unmet need for child
services. One set of issues relates to children in the public
sector, where differences within and across states in
implementation of policies to cover uninsured children result in
children with varying degrees of vulnerability to unmet need for
mental healthcare. Policies that guarantee coverage for uninsured
children across diverse populations and geographic areas are
needed to address this problem. Another set of issues applies to
the private sector, where there has been much debate about the
feasibility of implementing parity for mental health and physical
health services for both children and adults; yet prior studies
suggest that children have more to gain from parity, as they tend
to be high utilizers if they use services and more quickly reach
plan limits on coverage (Sturm, 1997). Thus achieving parity of
coverage in the private sector may be especially important for
addressing the unmet need for child mental health services. Yet,
Dr. Wells indicated that the meaning of parity is changing under
managed care, as the defined benefit does not necessarily directly
correspond to the level of care provided under management policies
(Burnam and Escarce,1999). Finally, Dr. Wells provided an example
of the promise of quality improvement for mental disorders for
adults, Partners in Care; in that study, depressed primary care
patients from clinics using quality improvement programs had
better one-year clinical outcomes and retention in employment than
similar patients in clinics without quality improvement programs
(Wells, et. al., 2000). These kinds of studies should be developed
for children and adolescents with major mental disorders, as we
develop practice-based solutions across public and private sectors
to address unmet mental healthcare needs of diverse child and
adolescent populations.
Suggestions for future research include: (1) Develop access and
mental health quality of care indicators for children and
adolescents; (2) Profile unmet need for under- and uninsured
subgroups in particular areas, in light of disparity in coverage
and implementation across federal and state programs; and (3)
Monitor access and quality of care for children and adolescents
nationally. Suggestions for policy changes include: (1) For the
uninsured, replace existing programs or fill the diverse gaps in
federal and state policies; (2) For the privately insured, start
with parity of mental health coverage with medical conditions, and
enforce tougher mandates for implementation. In addition, the
management and quality under parity needs to be evaluated; and (3)
For the publicly insured, implement quality improvement, and
reduce delays and the financial barriers to mental healthcare.
REACHING OUT TO AND ENGAGING FAMILIES
This panel discussed the challenges affecting access to and
coordination of mental healthcare for children and families,
including the lack of availability of non-traditional services.
One critical question addressed how to better engage families in
evidence-based services and treatments.
Barbara J. Friesen, Ph.D.,
Portland State
University
Dr. Friesen argued that effective mental health services
require cultural competence, full family participation and
appropriate services and supports. Family support and
participation can provide benefits, including reduced need for
inpatient treatment, shorter length of inpatient stay, better
service coordination, increased likelihood that a child will
return home following out-of-home placement, and increased
caregiver satisfaction. When families were involved in the child
welfare system, they were more likely to follow through with
treatment and the caseworkers were more likely to provide
appropriate care.
There are several significant barriers to family participation
and effective treatment for children's psychiatric disorders.
First, stigma attached to mental disorders results in families
feeling at fault for their child's mental illness. Low-income
families are most likely to receive disrespect from healthcare
providers. Second, family and service providers lack information.
Third, gaps in services are a major problem. Even when a family is
armed with information about exactly what they are looking for,
very often they cannot find it. Other practical, tangible barriers
include cost; many families have gone bankrupt trying to care for
their children. The most damaging policy is one in which parents
need to give up custody in order to get services for their
children. Distance can also be a barrier to care. Sometimes
families must travel long distances to receive appropriate care
for their child.
Suggestions for engaging families include: (1) Develop
anti-stigma campaigns to educate the public and healthcare
providers; (2) Train services providers in effective,
family-centered treatment approaches; (3) Support family members
and family organizations who can improve access to services
through a variety of outreach and support roles; and (4) Evaluate
these practices.
C. Veree’ Jenkins,
Family Involvement
Coordinator, Family HOPE, West Palm Beach, Florida
Ms. Jenkins described her family's experience overcoming the
ravages of the mental illness of her son, Joel. She called it the
story of "J.O.E.L.: Joy Overcoming Everything Logical." She
emphasized the importance of faith in dealing with a child's
mental illness. Joel had a journey through mental illness,
substance abuse, the juvenile justice system and early fatherhood.
All along the way, no one ever asked the family their faith and
what they believed in, said Ms. Jenkins. In a substance abuse
treatment program, Joel had his bible taken from him, told it was
a crutch preventing him from overcoming his substance abuse
problems. But, Ms. Jenkins said, you need faith in God to make it
through these systems; you put faith in the hands of the therapist
managing your care and sometimes are let down. Finally, Joel went
to the church where he found ‘wrap-around faith’ where they
provided mentoring, counseling services 24 hours a day, seven days
a week, helped him get a job, and get rid of his guns and provided
other assistance. Ms. Jenkins encouraged consideration of
faith-based organizations, which can provide safe havens, camps,
music, art, and all sorts of activities that can be very helpful
to a family in need. Joel is now drug, alcohol and cigarette free.
He is a law-abiding citizen, married, a good parent, employed and
owns his home. A recent graduate of the McCollough Seminary, he is
Assistant Youth Pastor of his church. As a family, Joel, Ms.
Jenkins and her husband work together to share their faith and
hope with others.
Lynn Pedraza, Ed.S.,
Family Member
Ms. Pedraza described how her family, which includes
biological, foster and adoptive children, encountered many
challenges trying to navigate the multiple systems often involved
in the care and treatment of children with mental disorders. So
much of the mental health world operates from a deficit
perspective requiring families to prove their needs, rather than
strengths, to get services. Workers have coerced parents and
threatened to take children away when families try to fight for
appropriate services. Suggestions to engage families include: (1)
Put mental health at the forefront of health policy decisions and
research efforts; (2) Research should focus on the human side of
mental health, the connections to others, trust, pleasure, joy and
respect. In other words, examine what caring looks like and what
happens when this caring is incorporated into mental health
services; and (3) Researchers need to become invol
