Prepared For:
National Association of Psychiatric Health Systems
Prepared By:
The Lewin Group
Study Team:
Leslie Scallet, Vice President
Stacey Bush, Associate
Margaret Rockwood, Analyst
Errol Fields, Research Assistant
Published 2000. Prepared by The Lewin Group July 1999.
TABLE OF CONTENTS
I. Introduction
II. The Costs of Neglecting The Behavioral Health
Needs of Children and Adolescents
III. Data on the Prevalence of Behavioral Health
Disorders in Youth
IV. Challenges in Identifying Youth with Behavioral
Health Problems
V. Diverse Systems Serving Multiple Needs
VI. Expenditures/Funding Sources
VII. Advances in Service Delivery/Promising Approaches
VIII. Key Problems Still Remain in Addressing Behavioral
Health Needs of Youth
EXHIBITS
Exhibit 1: Self-Reported Suicidal Behavior in High School
Students
Exhbit 2: Prevalence of Serious Emotional Disturbance
Exhibit 3: Prevalence of Youth Substance
Exhibit 4: Risk Factors
Exhibit 5: Behavioral Health Expenditures by Payer
Exhibit 6: Estimated 1996-1997 National Educational Enrollment
and Expenditures
Exhibit 7: U.S. Federal Child Welfare Spending (FY1999-2000)
Exhibit 8: Funding for Mental health/Substance Abuse Programs
Exhibit 9: System of Care Services
Exhibit 10: Examples of NAPHS Services
APPENDIX
I. Introduction
Dramatic events, including recent incidents of school violence, shine
the spotlight of public attention on behavioral disorders in youth.
This attention is welcomed by professionals engaged in the daily practice
of serving children and youth, whose mission is to identify, intervene
and treat young people exhibiting signs of such problems. However, in
order to understand the troubling incidents that achieve public notice,
it is essential to have a clearer picture of the entire problem of mental
and behavioral disorders in youth.
The past two decades have produced significant treatment advances,
from more potent mental health medications with fewer side effects,
to the creation of new home and community-based models of care. With
the opportunity to access appropriate care, many youth with behavioral
health problems go on to live healthy and productive lives.
The National Association of Psychiatric Health Systems (NAPHS)
asked the Lewin Group to produce a report providing baseline information
on current knowledge and thinking about care for youth with psychiatric,
emotional, and behavioral problems. This report is based on a literature
review, tested and reinforced by extensive structured interviews with
members of the NAPHS Youth Services Committee (comprised of leading
providers serving children and youth). The report highlights the following
issues:
- The costs of neglecting the behavioral health needs of children
and adolescents;
- The prevalence of behavioral health disorders in youth, as well
as the difficulties associated with identifying these youth;
- The diversity and fragmentation of service systems and funding streams;
- Promising services and programs available to treat youth; and
- Remaining challenges associated with addressing behavioral health
needs of youth.
Illustrations from the practical experience of care providers ground
the presentation of findings from research and data analysis. The report
ends with several conclusions drawn from the study. In addition, NAPHS
program examples illustrating approaches to providing care are in the
Appendix to the report.
Primary Findings
- Despite considerable progress over the last two decades in expanding
access to treatment for youth with behavioral health needs, many
children are not receiving the care they need from mental health specialists.
- Mental disorders in children and adolescents include a broad spectrum
of behavioral and emotional disorders that require a variety of treatments
and services along a continuum of care. There is no "one
size" that fits all.
- Several discouraging trends indicate that youth with mental health
and substance abuse problems are at greater risk than the general
population for dropping out of school, committing crimes, and attempting
or committing suicide.
- The direct and indirect costs of mental illness to society are
significant from both an economic and humanitarian perspective.
The most recent published data estimates the total costs for all mental
disorders at $148 billion in 1990, and new research is likely to set
the figure higher.
- Current data on the prevalence of mental illness indicates that
at least 11 million youth have a serious diagnosable mental, emotional
or behavioral health disorder. However, it is likely that this
figure underestimates actual prevalence rates. In addition, there
is an extremely high prevalence of youth with co-occurring mental
health and substance use disorders.
- Data are lacking on the prevalence of behavioral health
disorders among youth who do not fall within the "priority population"those
with serious emotional disturbancesand on many of the specific costs
and funding sources associated with behavioral health disorders in
children and youth.
- More than half of the funding for all behavioral health servicesand
at least that much for behavioral health services for children and
youthcomes from public sources.
- Medicaid is the key public funding source for behavioral
disorders. Since states have the freedom to select which optional
services they will include or exclude in their benefits, there are
significant variations from state to state in the services
and rates that are reimbursed to providers.
- The adoption of managed care in both private insurance and
the public sector (e.g., Medicaid) has significantly impacted service
systems and funding for child and adolescent behavioral health.
- The creation and testing of the system of care philosophy
has advanced knowledge about the requirements for effective service
systems for children and youth.
- Members of the NAPHS have broadened the array of services
they provide to children and youth to ensure that they can meet the
individual needs of youth, as well as remain competitive in the marketplace.
- Key problems remain in addressing the behavioral heath needs
of youth: the lack of services and funding to meet demand,
the existence of fragmented systems of care, inflexible
funding streams, and challenges in recruiting and retaining
front-line staff.
II. The Costs of Neglecting the Behavioral Health Needs of Children
and Adolescents
The failure of troubled youth to obtain necessary mental health treatment
carries alarming implications for the loss of human potential, as well
as the more immediate economic and social costs.
A wide array of social problems, appear to be related,
at least in part, to the unmet behavioral health needs of children and
adolescents. An abundance of literature suggests that youth with behavioral
health problems are at greater risk for: 1) committing crimes that place
them in the juvenile justice system; 2) dropping out of school; and
3) contemplating or succeeding in committing suicide.
Youth Crime/Violence and the Juvenile Justice System
The impact that known behavioral health
problems have on children and family members is substantial, but equally
significant is the impact on individuals and communities when such disorders
are unrecognized or untreated by professionals. Consider the following
excerpt from a New York Times article regarding the highly publicized
incident of two teenage boys in Littleton, Colorado, who committed suicide
immediately after killing 12 fellow students and a teacher.1
"They seemed, people said at the time, like normal children
from normal families, rattling along the bumpy emotional road that
most people believe represents the normal course of the teen-age years."
"But when psychiatrists investigated the suicides of 27 youths
in a similar incident, interviewing the victims friends, teachers
and family members, their inquiry revealed not normal teen-agers,
but severely disturbed youth. These were severely disturbed youth
whose psychological problems were longstanding and whose unhappiness
had leached out in a hundred clues that were ignored or undetected
by those around them."
"This contrast between surface assessment and underlying
reality, mental health experts say, is typical of most cases in which
teen-agers have committed acts of extreme violence. As the days proceed
and these boys lives are put under the microscope we may begin to
see a pattern of early difficulties."
The Littleton, Colorado incident, as well as other recent violence
committed by schools and communities, represent extreme consequences
of adolescents lacking emotional stability. Although such acts of violence
are rare, the literature suggests that youth with behavioral health
disorders often commit crimes that place them in the juvenile justice
system. It is estimated that 60 percent of the teenagers in juvenile
detention have behavioral disorders and approximately 20 percent experience
serious emotional disturbances. In addition, some 50 to 75 percent have
serious substance abuse problems.2
Many Americans report that they view the world as an increasingly dangerous
place to live, and widely publicized incidents of youth crime and violence
often lead the public to believe that youth-specific violent crimes
are on the rise. Statistics suggest, however, that the majority of juvenile
offenders housed in correctional institutions have been committed for
nonviolent crimes. Ninety-four percent of the children in the
juvenile justice systems are arrested for property crimes and other
less serious offenses, such as burglary and larceny.3
The publics perception of youth crime and violence has significant
implications for adolescents with behavioral health disorders in the
juvenile justice system. For example, numerous states are implementing
policies that incarcerate larger numbers of youth for longer periods
of time and prosecuting minors in adult criminal courts rather than
in juvenile courts. From 1992 through 1995, 40 states and the District
of Columbia passed laws making it easier for juveniles to be tried as
adults.4
In fact, the literature on this topic indicates that the criminal justice
system often serves as a "de facto" institution for adolescents
with mental health problems, substituting incarceration for needed treatment.
1 Goode, E. Deeper
Truths Sought in Violence by Youths. The New York Times. May
4, 1999.
2 National Mental
Health Association. Website Press Release. 1999.
3 Jones, M., Krisberg,
B. Images and Reality: Juvenile Crime, Youth Violence and Public Policy.
National Council on Crime and Delinquency. June 1994.
4 Ibid.
School Problems
School administrators and teachers constantly struggle with how
to address the diverse mental health-related needs of their students,
which range from mild learning disabilities to the emotional impact
of parental neglect or abuse to depression that may lead to suicide.
Educators are often overwhelmed and lack the skills to provide assistance
to troubled children in their classrooms, particularly children with
behavioral health disorders.
Children with unrecognized or untreated emotional disorders often cannot
learn adequately in school or benefit readily from the kinds of peer
and family relationships that are essential to becoming a healthy and
productive adult. They are also at heightened risk for school failure
and drop out, drug use, risk behaviors of HIV transmission, and many
other difficulties.5
Additionally, almost half of students with serious emotional disturbance
drop out of grades 9 to 12, and 20 percent are arrested at least once
before leaving school. Overall, students with serious emotional disturbances
miss more days of school per year than do students in other disability
categories. Of those students with serious emotional disturbance who
drop out of school, 73 percent are arrested within five years of leaving
school.6
5 Hyman, S. Director, National Institute of Mental
Health. Testimony on Children's Health. Appropriations Subcommittee
on Labor, Health and Human Services and Education, Washington, DC:
Oct. 29, 1997.
6 Ibid.
Suicide
Suicide is one of two leading causes of death for children aged 10-19
that has dramatically increased during the past two decades. In teenaged
black males, suicide is increasing at rates so striking that they warrant
the term "epidemic." 7
The increased suicide rate among adolescents is reflected in high rates
of behavior related to suicide, such as suicidal ideation, making concrete
plans for suicide, and actual suicide attempts (Exhibit 1). Major risk
factors that are associated with mortality among children include the
abuse of alcohol and drug use by children and/or their parents.
Exhibit 1: Self-Reported Suicidal Behavior in High
School Students, 1990

Source: Youth Behavior Risk Factor
Survey, 1991
7
Health and the American Child: Part 1: A Focus on Mortality Among
Children. Risks, Trends and Priorities for the Twenty-First Century.
A Report to the Nation from the Public Health Advisory Board. May
1999.
Costs to Society
The most recent published information on the costs of mental illness
to society is from a National Institute of Mental Health sponsored study
conducted by Dorothy Rice and colleagues of the University of California,
San Francisco, nearly ten years ago. Key data from the study focuses
on the costs associated with adults and children with severe mental
disorders.8 However,
separate analysis of costs for adults and children/youth are not available.
Rices study indicates that in 1990 the core indirect costs
of severe mental illness in the United States were conservatively estimated
at approximately $44 billion. This cost to society includes lost productivity
and lost earnings due to illness, as well as lost earnings due to premature
death. The direct costs of treating severe mental illness
were estimated at $20 billion. These costs occurred in a context of
$67 billion in direct costs for treatment of all mental illnesses,
which represents 10 percent of the total $760 billion direct costs for
all health care in the United States in 1990.
The other related costs of severe mental illness include expenditures
for social welfare administration, criminal justice, and family caregiving.
These were estimated at about $4 billion. The total costs (core costs,
direct and indirect, plus other related costs) of severe mental
illness in 1990 were estimated to be nearly $74 billion. For all
mental disorders, the total costs were $148 billion.
More current estimates are likely to show higher costs.9
It is also notable that mental illness has been identified in the Global
Burden of Diseases study as responsible for over 15 percent of the total
burden of disease in established market economies such as the United
States.10
Presumably, a substantial proportion of indirect costs of severe mental
disorders can be attributed to the relatively large population that
is now untreated. Given the effectiveness of current treatments for
mental health disorders, it seems likely that improved access to treatment
would decrease indirect costs, possibly offsetting increases in direct
costs to a significant degree.11
8 Health Care Reform
for Americans with Severe Mental Illnesses: Report of the National
Advisory Mental Health Council. American Journal of Psychiatry.
1993.
9 The National Institute
of Mental Health (NIMH) has contracted with The Lewin Group to provide
updated estimates of the direct and indirect costs of mental illness
to society. Because there have been significant improvements in researchers'
knowledge base about mental illness, The Lewin Group's report will
likely present figures that are higher than those presented in the
past. The report, however, is still in draft form and not yet available
for circulation.
10 Murray, C.L.,
Lopez, A.D., eds. World Health Organization, World Bank, Harvard University,
1996.
11 Ibid.
III. Data on the Prevalence of Behavioral Health Disorders in
Youth
The literature indicates that approximately 20 percent of children
and adolescents ages 9 to 17, about 11 million youth in total, have
a diagnosable mental, emotional or behavioral health disorder, from
attention deficit disorder and depression to bipolar illness and schizophrenia.12
Mental disorders in children and adolescents include a broad spectrum
of behavioral and emotional disorders, which range in severity from
minimally severe to more complex and disabling illnesses. Nine to 13
percent of children/adolescents experience serious mental or emotional
disturbances that substantially interfere with or limit their
ability to function in their family, school, and community. Between
5 and 9 percent of children have disorders that severely interfere
with their ability to function in important life domains. Exhibit 2
illustrates this point.
Exhibit 2
|
Prevalence
of Serious Emotional Distubrance
|
| Youth
with any
Diagnosable Disorder |
20% |
| Youth
with a Serious Emotional
Disturbance &
Substantial Functional
Impairment |
9-13% |
| Youth
With Serious Emotional
Disturbance &
Extreme Functional
Impairment |
5-9% |
Source: Meta-analysis,
Mental Health, US 1996, SAMHSA Center for Mental Health Services US
Department of Health and Human Services
The most commonly diagnosed childhood disorders include
behavioral, anxiety and affective disorders such as conduct disorder,
attention-deficit disorder, and clinical depression. While the names
attached to these conditions suggest generally, the childs problem,
diagnoses require a finding that the child meets rigorous tests for
the severity of a constellation of symptoms.
Estimates suggest that each year 11 percent of youth receive a diagnosis
of conduct disorder and three to six million of clinical depression.13
Attention deficit disorders comprise 50 percent of child psychiatry
clinic populations.14
Less often, youth are diagnosed with psychotic disorders, such as schizophrenia.
Because youth with mental disorders represent such a heterogeneous
population, the various disciplines, agencies, and interest groups advocating
for, and serving these children, must continuously develop creative
strategies to meet their individual needs.
12 Manderscheid,
R. and Sonnenschein, M.A. Mental Health, United States. Meta-Analysis
Study. United States Department of Health and Human Services, Substance
Abuse and Mental Health Services Administration, Center for Mental
Health Services. 1996.
13 American Psychiatric
Association. Let's Talk Facts About Childhood Disorders. Produced
by the APA and Joint Commission on Public Affairs and the Division
of Public Affairs. 1996.
14 Attention Deficit
Disorder: A Review of the Past 10 Years. Journal of American Academy
of Child and Adolescent Psychiatry. August, 1996.
Substance Use Disorders
Substance use disorders - the misuse of alcohol, cigarettes and/or
illegal and legal drugs, can reach the level of diagnosable psychiatric
disorders. They often co-occur with other psychiatric disorders, and
have a substantial impact on the lives of children and youth.
Adolescents with substance use disorders or addictions to alcohol,
marijuana, cocaine, opiates, hallucinogens, inhalants, sedatives, or
nicotine cannot control their use of a particular drug(s). Such adolescents
become intoxicated on a regular basis and often need to use a particular
drug for normal daily functioning. Individuals in this population struggle
with issues related to family, school and social life. In addition,
substance use disorders can cause or aggravate a psychological or physical
problem.15
There has been little systematic research exploring the natural course
of substance use disorders in the adolescent or general population.16
One study conducted in 1995, however, found that of 1,765 adolescents
aged 15 to 24 years, about 3.3 percent were dependent upon some sort
of drug in a 12 month period.17
In addition, despite a slight drop in the number of youth, who self-report
substance use in 1998, the nations secondary school students and young
adults continue to show a level of involvement with drugs greater than
any other industrialized country.18
According to the Monitoring the Future Study (Exhibit 3), in 1998 more
than 12 percent of 8th graders, 21 percent of 10th
graders, and 25 percent of 12th graders reported using some sort of
substance (cocaine, opiates, PCP, marijuana, amphetamines, methadone,
barbiturates) in a given month.
Exhibit 3: Prevalence of Youth Substance 
Although there are no large-scale epidemiological studies
on co-occurring psychiatric disorders among adolescents, three population-based
studies suggest high rates of co-occurrence of alcohol disorders with
mental health disorders (depression, anxiety, eating disorders, and
conduct disorder).19
In addition, a number of studies suggest a particularly high prevalence
of alcohol disorders associated with conduct disorder and depression,
and an even higher prevalence of alcohol disorders when a child is diagnosed
with both disorders.20
Youth and adults with co-occurring disorders can be placed into any
one of the following categories:21
- Complicated Chemical Dependency: Individuals diagnosed with
alcoholism or drug addiction who have psychiatric complications, though
not necessarily major mental illness;
- Substance Abusing Mentally Ill: Individuals with exacerbation
of mental illness, which is complicated by substance abuse, whether
or not the patient views substances as a problem; and
- Substance Dependent Mentally Ill: Individuals with mental
illness, who also have alcoholism and/or drug addiction, and who need
treatment for addiction, for mental illness, or for both.
It is typical for youth with co-existing behavioral health disorders
to receive treatment only if the behavior is considered dangerous or
disruptive, and to be diagnosed mistakenly with only one of the disorders.22
15 American Psychiatric Association.
Let's Talk Facts About Childhood Disorders. Produced by the APA and
Joint Commission on Public Affairs and the Division of Public Affairs.
1996.
16 Weinberg, Naimah, et al. Adolescent
Substance Abuse: A Review of the Past 10 Years. Journal of American
Academy of Child and Adolescent Psychiatry. March, 1998.
17 Ibid.
18 National Survey on Drug Use from
The Monitoring The Future Study, 1975-1997. U.S. Department of Health
and Human Services, Public Health Service, National Institutes of
Health.
19 Weinberg, Rahdert, et. al. Adolescent
Substance Abuse: A Review of the Past 10 Years. Journal of American
Academy of Child and Adolescent Psychiatry. March, 1998.
20 Ibid.
21 Mental Health Issues Today. Volume
1, Number 2. Winter 1997.
22 Ibid.
IV. Challenges in Identifying Youth with Behavioral Health Problems
Of all the afflictions of children, emotional and behavioral disorders
are probably the least well understood. Lack of understanding of these
disorders among the general public as well as among policymakers has
made it difficult to secure resources for services and supports for
this population. The public perception of many youngsters with emotional
disturbance is that they are "bad" rather than sick; the children
themselves, or in many cases the parents, are blamed for the problems.23
Child advocates have attempted to inform the public on the causes of
behavioral health problems. Scientists and mental health experts have
successfully identified many key factors that place children and adolescents
at risk of experiencing behavioral health disorders, including biological
and genetic factors, acute or chronic physical dysfunction, and environmental
conditions and stresses. Most in the mental health field agree that
childrens mental health disorders are due to a combination of biological,
psychological and environmental factors. The following table highlights
some factors that place children at risk.24
Exhibit 4: Risk Factors
|
Biological Factors
|
Psychological Factors
|
Environmental or Social Factors
|
- Genetic makeup
- Brain chemistry
- Serious nutritional deficiencies
|
- Problems with intelligence
- Reasoning abilities
- Self-esteem
- Motivation
|
- Peer relations
- Culture
- Economics
- Family issues
|
In addition, childrens emotional health can be affected by system-induced
factors such as removing a child from natural parents or siblings, placing
a child in multiple out-of-home settings, labeling a child, and/or forcing
a child to change schools.25
Despite this knowledge, the ability to distinguish between normal aspects
of a childs development, and mental health problems that may worsen
if not treated, is a challenge for parents, teachers, and mental health
care professionals. There is much evidence in the literature that prevalence
rates are underestimated.26
Distinct challenges associated with identifying mental disorders in
youth include:
- Professionals may be reluctant to label a child with a mental health
diagnosis because they fear the child will be stigmatized;
- The symptoms of neurobiological brain disorders sometimes overlap
with other disorders observed in childhood, and children often have
a difficult time communicating the symptoms they are experiencing
to adults;
- Teenage years may be associated with many developmental changes
that are challenging for parents. Such challenges might include a
teenagers changing moods and behaviors, drug experimentation, rebelliousness,
or difficulty making social adjustments. Parents often accept these
behaviors as "phases," of teenage years, but some of the
behaviors may mask underlying mental health disorders; and
- Schizophrenia develops primarily between ages 16 and 25, which means
many youth may be developing symptoms during high school years. The
illness, however, is typically not diagnosed until at least one year
after the symptoms begin to surface.
In addition to the challenges associated with identifying behavioral
health disorders in youth, there are significant inconsistencies in
definitional and diagnostic characteristics among the programs and providers
serving children. Within the federal government alone, the Center for
Mental Health Services (CMHS) in the Department of Health and Human
Services, the Department of Education and the Head Start Program definitions
of behavioral health disorders differ from one another.27
These inconsistencies make it difficult to estimate the actual number
of children with mental disorders.
A leading approach to addressing these concerns has been the effort
to identify and provide care to youth with the greatest mental health
needs. Most notably, CMHS has developed a definition to identify
the priority population for federal mental health concerns by distinguishing
between 1) youth with diagnosable mental illnesses and 2) youth with
either substantial or extreme functional impairment. CMHSs definition
targets the second group, youth with either substantial or extreme functional
impairment, known as serious emotional disturbance. SED criteria include:
- The presence of a "diagnosable mental, behavioral, or emotional
disorder of sufficient duration to meet diagnostic criteria specified
within the DSM-III-R, 28"
and
- The disorder has resulted in functional impairment, which substantially
interferes with or limits the childs role or functioning in family,
school or community activities.
Because SED children have been targeted as the priority population
for federal mental health concern, the majority of federal and state
initiatives, as well as research efforts on the prevalence of mental
health disorders in youth, focus on individuals with SED. Studies that
are specific to children who do not meet SED criteria and/or may be
at risk of developing mental health problems are much less common.29
Advocates and policymakers concerned with childrens mental health
concur that the identification of a priority population has been a progressive
step in responding to childrens behavioral health needs. Treatment
interventions remain critical for those children who may have less likelihood
of successful outcomes because of the complexity of their problem(s).
Most would agree that youth with less severe disorders also warrant
the publics attention, particularly because they are more difficult
to identify.30
In addition, early identification and treatment of youth with less severe
disorders can help prevent children from crossing over a line into the
priority population.
23 Stroul. B. Children's
Mental Health. Creating Systems of Care in a Changing Society. 1996.
24 Community-Based
Mental Health Service for Children in the Child Welfare System, Macro
International Inc. June 30, 1992.
25 Ibid.
26 Husted, June R.
Mental Illness in Children and Adolescents. National Alliance for
the Mentally Ill. June, 1997.
27 Manderscheid,
R. and Sonnenschein, M.A. Mental Health, United States, 1994. Meta-Analysis
Study. United States Department of Health and Human Services, Substance
Abuse and Mental Health Services Administration, Center for Mental
Health Services. 1996.
28 American Psychiatric
Association's Diagnostic and Statistical Manual.
29 Community-Based
Mental Health Service for Children in the Child Welfare System, Macro
International, Inc. June 30, 1992.
30 Final Report:
Community-Based Mental Health Service for Children in the Child Welfare
System. Submitted to Assistant Secretary for Planning and Evaluation,
Department of Health and Human Services. Macro International, Inc.
June, 1992.
V. Diverse Systems Serving Multiple Needs
A key factor in serving children and youth with behavioral health
problems is the range and diversity of systems and funding that must
be coordinated. This section provides a brief overview of the major
systems involved in delivering care and the following section describes
the available funding streams. While each of these systems provides
important elements of a service system, their divergent goals and philosophies
also ensure fragmentation and inconsistency. Many children and youth
simply "fall between the cracks" of these systems. A coherent
response to the behavioral health problems of children and youth require
creative reconciliation of both the mandates and funding streams provided
by these diverse systems.
Education
The educational system clearly has a stake in assuring that children
receive the mental health services they require, not only because healthy
children are easier for teacher and administrators to instruct, but
also because mental health has a direct effect on a childs potential
to learn.
Despite the fact that as many as 20 percent of children have emotional
or behavioral problems warranting intervention, less than 1 percent
of schoolchildren are identified nationally by the schools as having
such problems.31
In many ways schools are the ideal place for children to be identified
and receive health care, since it is likely that a childs problems
will manifest in the school environment. Since nearly all children attend
school, schools can provide a significant opportunity to treat children
in need, and to enroll children in public assistance programs when they
seek treatment.
The goal of prevention and early intervention is to identify troubled
children early, provide appropriate interventions for the child and
the family, and prevent problems from reaching serious proportions.
Although prevention and early intervention require collaboration among
the different service systems and agencies, educators probably have
the greatest opportunity to increase the number of children identified
at an early age.
The Education for All Handicapped Children (EAHC) [PL 94-142], created
in 1975, now titled Part B of Individuals with Disabilities Education
Act (IDEA), requires that all handicapped children ages 3-21 have access
to a free, appropriate public education in the least restrictive environment.
Education is to be provided alongside their non-handicapped peers whenever
possible and in accordance with an "individualized education program"
(IEP).
The majority of children with SED in the school system are removed
from mainstream classrooms and placed in special education settings.
During the 1992-1993 school year, over 400,000 children and youth identified
as SED were served by special education systems, accounting for 8.7
percent of all children receiving special education services.32
The common denominators among the students in special education programs
include poor academic records, extraordinarily high dropout rates, and
a high probability of encounters with the juvenile justice system.
Current Legislative Proposals: EAHC/IDEA has been amended by
various acts over the past several years that have essentially expanded
the age groups covered by the act. Congress is currently considering
the Smart IDEA Act of 1999 [HR 1672 IH] which would require State Medicaid
Plans to pay for medical services in IEPs under the IDEA in excess
of $3,500 over a school year.
31 Stroul, B. Children's
Mental Health: Creating Systems of Care in a Changing Society. 1996.
32 Oswald, D., Coutinho,
M. Identification and Placement of Students with Serious Emotional
Disturbance. Correlates of State Child-Count Data. Journal of Emotional
and Behavioral Disorders. 1995.
Child Welfare
Numerous children receive care from the child welfare system,
a complex patchwork of state and local laws and agencies and programs
that intervene in cases of child abuse and neglect. Child welfare interventions
primarily include family counseling, in-home support and training, removal
of children from their homes, residential behavioral treatment, and
either the childs return to a strengthened family or adoption or other
permanent placement.
Title IV is an open-ended federal entitlement that reimburses the federal
share of foster care maintenance, adoption assistance, and independent
living initiatives. Title IV-B provides a capped federal grant-in-aid
program that reimburses states for up to 75 percent for costs associated
with child welfare programs including time-limited family reunification
services.
The Adoption and Safe Families Act of 1997 [P.L. 105-89] continues
the eligibility for the adoption assistance subsidy under Title IV-E
to children whose adoption is disrupted. The primary thrust of this
act is to improve the safety of children (a goal that is paramount to
family reunification), promote adoption and other permanent homes, and
to support families.
Current Legislative Proposals: The Foster Care Independence
Act of 1999 [H.R. 1802], approved by the House Ways and Means Committee
May 26, 1999, would extend services and supports for youth transitioning
from foster care to independent living.
Juvenile Justice
The historical philosophy of the juvenile court has been to emphasize
treatment and rehabilitation rather than punishment and retribution.
This has changed in recent years, however, with mounting pressure from
communities and legislators to impose harsher penalties and seek retribution
from youth committing violent crimes.
The juvenile justice system is largely segregated from other systems
such as medical care, mental health services and schools that serve
children and families. Few children receive adequate screening, assessment
or treatment of behavioral health disorders in the juvenile justice
system.33
Current Legislative Proposals: There are currently several key
pieces of pending legislation that will have a significant impact youth
with behavioral health needs in the juvenile justice system.
The Juvenile Justice and Delinquency Prevention Act (JJDPA) of 1974
requires that states receiving federal funds maintain four core protections
for children. These core protections include: 1) De-institutionalization
of Status Offenders, which disallows secure detention or confinement
in excess of 24 hours for status offenders,34
2) Separation of children (by sight and sound contact) from adult offenders
in confinement, 3) removal or limited detention of children in adult
jails and prisons, and 4) Disproportionate Minority Confinement.
The Violent and Repeat Juvenile Offender Accountability and Rehabilitation
Act of 1999 would amend the JJDPA to: 1) enforce tougher standards for
juveniles that commit violent crimes, 2) weaken the language requiring
separation of children and adults in confinement, 3) allow parents in
rural areas to permit their children to be held in adult jails, 4) establish
the National Institute for Juvenile Crime Control and Delinquency Prevention
within the National Institute of Justice, and (by the Harkin and Kennedy
Amendment) 5) require school personnel to ensure immediate interventions
and services to children removed from school for any act of violence.
The Mental Health Juvenile Justice Act, introduced in the Senate and
referred to the House Subcommittee on Crime in the House (February 1999),
would allow for training of juvenile justice personnel for the assessment
and diversion of juvenile with mental health or substance abuse disorders.
In addition, the bill would 1) provide state block grants to develop
and implement effective screening and assessment of juveniles entering
the juvenile justice system, 2) allow states to use prison construction
funds to provide mental health screening/ treatment services for juveniles
and adults in correctional facilities, 3) authorize the remedy of abusive
conditions in juvenile justice facilities, and 4) require states to
report on the prevalence of mental health and substance abuse disorders
of youth in the juvenile justice system
Federal and state laws have established agencies to be responsible
for mental health and substance abuse services. Within state agencies,
there may or may not be a section or an individual responsible for childrens
services. (In a few states child mental health services are the responsibility
of a statewide childrens agency). The federal Substance Abuse and Mental
Health Services Administration (SAMHSA) administers an array of programs
primarily designed to support state efforts. Block grants form by far
the largest elements of this support, leaving funding decisions for
childrens services largely up to the individual states. SAMHSA also
administers several specialized grant programs for children and youth
services --- notably the childrens mental health services program.
PL 102-321 authorizes the Secretary of Health and Human Services to
provide grants through the Director of CMHS to public entities providing
comprehensive community health services to children with serious emotional
disturbances.35
Current Legislative Proposals: In May of 1999 the Youth Drug
and Mental Health Services Act [S. 976] was introduced in the Senate
to renew programs within the jurisdiction of SAMHSA. This act would
focus the authority of SAMHSA on community based services for children
and adolescents, to introduce new prevention and treatment oriented
services directed toward youth who are at risk of engaging violent behavior,
and to respond to crises, especially those involving youth and violence.
In addition the act would provide a six-year extension for grants under
the child mental health program.
33 Cocozza, J. Responding
to the Mental Health Needs of Youth in the Juvenile Justice System.
The National Coalition for the Mentally Ill in the Criminal Justice
System. November 1992.
34 Status offenders
are individuals whose behavior (such as running away from home) only
constitutes an offense because they are "minors."
35 This program is
the successor to the Child and Adolescent Service System Program (CASSP)
that originated the concept of the "system of care" for children.
VI. Expenditures/Funding Sources
Each of these service systems,
as well as other more generic support programs (e.g., housing), provide
financial assistance to help children and youth with behavioral health
problems. The challenge, again, is to reconcile the conflicting requirements
and demands of the varied programs in order to fashion a coherent package
of services and supports.
Because mental illnesses affect so many aspects of an individuals
life, children and adolescents living with such disorders often need
an extensive array of services, including assistance with social skills,
personal care, housing, education, and medical treatment. Funding for
treatment and this wide array of safety net services must come from
a variety of private and public sector (local, state and federal) funding
sources, each with its own mandates and priorities.
The multiple agencies responsible for reimbursing providers for childrens
services include state Medicaid agencies, state and county mental health
and substance abuse authorities, education, child welfare and juvenile
justice agencies. Although some children receive funding for the behavioral
health care they need from the private sector (i.e., employer-sponsored
health insurance, private foundations), the majority of funding for
mental and substance abuse services provided to youth is derived from
a variety of public sector programs, and most often from Medicaid.
Until the 1980s, public agencies that provided mental health services
to children and families received financial support primarily from state
appropriations, augmented by local tax dollars, federal grants, and
some first- and third-party payments.36
In the 1980s, however, states began to experiment with a variety of
approaches designed to finance mental health services for children.
These efforts have involved identifying new avenues of funding under
Medicaid, accessing child welfare entitlement funding, and integrating
services and funding streams across child-serving agencies.
In the 1990s, advocates have succeeded in raising the nations consciousness
regarding mental illness through the passage of the National Mental
Health Parity Act and adoption of mandated coverage and parity requirements
by more than 20 states. However, the overall growth of spending for
the treatment of mental illness as well as substance abuse has been
lower than the growth of health care spending.37
While overall mental health and substance abuse spending increased
by 7.2 percent annually between 1986 and 1996, estimates indicate that
physical health care spending grew by 8.3 percent annually, according
to the Health Care Financing Administration. Further, a recent study
of the Hay Group found that the value of behavioral health benefits
in health insurance continues a decade-long decline of 54% compared
with a decline of 11.5% for general health benefits.38
These findings may indicate that national trends that are affecting
much of the health care sector, such as the growth of managed care and
the increasing capacity of health plans to negotiate discounts from
providers, are having a proportionately greater impact on mental health
and substance abuse services.39
The best available data specific to dollars spent on youth services
indicate that approximately $4.8 billion was spent in the nation for
child and adolescent mental health services in 1990.40
This accounted for about 7.1 percent of total mental health care expenditures.
The author of the study reports that this figure is an overestimate
for children under age 15 and an underestimate for those under age 18.
To date, no systematic data collection has been undertaken to document
the distribution of youth mental health expenditures by payment sources.41
The available literature provides clear evidence that the public sector
is also the primary payer for behavioral health services in general.
In 1996 the public sector paid 54.2 percent of total mental health
and chemical dependency treatment and in contrast, private insurance
accounted for 26.3 percent of all behavioral health expenditures, followed
by consumer out-of-pocket expenditures (16percent) and other private
spending (3.5 percent).42
36 Ibid
37 McKusick, D., Mark,
T., King, E., Harwood, R., Health Affairs. September/October
1998, Volume 17, Number 5. Spending for Mental Health and Substance
Abuse Treatment, 1996.
38 Hay Group, Health
Care Plan Design and Costs Trends: 1988 through 1998.
39 McKusick, D.,
Mark, T., King, E., Harwood, R., Health Affairs. September/October
1998, Volume 17, Number 5. Spending for Mental Health and Substance
Abuse Treatment, 1996.
40 Rice, D.P., Kelman,
S., Miller, L.S., and Dunmeyer, S. The Economic Costs of Alcohol and
Drug Abuse and Mental Illness: 1985. Report submitted to the Office
of Financing and Coverage Policy of Institute for Health and Aging,
University of California, 1990.
41 Manderscheid,
R., Sonnenschein, M.A., Mental Health, United States, 1994.
42 National Expenditures
for Mental Health, Alcohol and Other Drug Abuse Treatment. United
States Department of Health and Human Services, Substance Abuse and
Mental Health Services Administration. 1996.
Exhibit 5: Behavioral Health Expenditures by Payer

Medicaid is the key source of public funding for child and adolescent
mental health services. Medicaid children represent 50 percent of the
population receiving Medicaid in the nation, and within the states their
use of public mental health services represents approximately 30 to
40 percent of the children served.43
Medicaid is required to provide: 1) outpatient hospital services, including
partial hospitalization, 2) physician services, and 3) Early and Periodic
Screening, Diagnosis and Treatment for children with emotional or substance
abuse problems. Although Medicaid is a federal program, each state is
governed by a State Medicaid Plan, which allows states to provide substantial
variations in the types of optional services covered and the
rates paid to providers of services.
The Childrens Health Insurance Program (CHIP) is another potential
funding source available to treat youth with behavioral health needs.
Prior to the implementation of CHIP in 1997, children who were ineligible
for Medicaid, but whose families had incomes too low to afford private
insurance, often lived without basic health care coverage.44
In 1995, more than 10 million children under the age of eighteen had
no health insurance. CHIP has created the opportunity to expand coverage
to nearly four million uninsured children from low-income families.
The Department of Education also provides a significant amount of funding
allocated to special education for children and youth with disabilities,
including those with mental illness. In 1996-97, the United States spent
$339.8 billion on total elementary and secondary education, and 5.2
million children served under special education programs received approximately
$27.6 billion, or 8.14% of this total. In addition, the United States
spent $3.7 billion on special education funding for the 447,0000 SED
children.
43 Stroul, B. 1996.
Children's Mental Health: Creating Systems of Care in a Changing Society.
44 SCHIP: The State
Children's Health Insurance Program. An Analysis of the Mental Health/Substance
Abuse Benefits and Cost-Sharing Policies of Approved State CHIP Plans.
National Mental Health Association
Exhibit 6: Estimated 1996-1997 National Educational Enrollment and
Expenditures
| |
All K-12 students
|
All special education students
|
All SED students
|
% special education
|
% SED
|
|
Enrollment45
(in millions)
|
45.841
|
5.224
|
0.447
|
11.4%
|
0.97%
|
|
Expenditures
(in billions)
|
$339.80046
|
$27.64947
|
$3.685 48
|
8.14%
|
1.08%
|
The expenditure figures are derived from two separate sources listing
per pupil expenditures. Per footnotes, Thomas Parrish, et al.,
adjusted the per pupil expenditures for special education students from
1985-86 data to 1995-96 dollars. The Lewin Group's adjustment of 1995-96
data to 1996-97 prices uses the CPI-U from January 1996 to January 1997
(1982-84=100). Parrish, et al., adjusted the 1985-86 data for
SED per pupil expenditures to 1996-97 dollars. The population data is
extracted from 1996-97
The role of the federal child welfare programs, Titles IV-B and IV-E
of the Social Security Act, is to assist states in financing child welfare
programs.49 In
general grant funds are reserved for foster care "maintenance"
costs (e.g., shelter, food, personal needs of children), case work,
data systems, staff training and administrative expenses. Medicaid is
the single largest source of health care financing for children in the
child welfare system.
While the data does not reveal how much of this is specific to behavioral
health, the following exhibit provides a summary of key childrens programs
designed to prevent and improve the adverse conditions of children,
as well as 1999 expenditures and proposed 2000 expenditures in child
welfare spending.50
45 U.S. Department
of Education, Appendix A, Twentieth Annual Report to Congress on the
Implementation of the Individuals with Disabilities Education Act,
A2-A226.
46 U.S. Department
of Education, Appendix I: Total Expenditures for Education in the
United States, FY 1999 Budget.
47 Per pupil expenditures
from Thomas B. Parrish, Fran O'Reilly, Ixtlac E. Dueñas, and Jean
Wolman, State Special Education Finance Systems, 1994-95, Center
for Special Education Finance, June 1997, 46. Parrish, et al.,
report 1985-86 data adjusted to 1995-96 dollars. The Lewin Group's
adjustment of 1995-96 data to 1996-97 prices uses the CPI-U from January
1996 to January 1997 (1982-84=100).
48 Per pupil expenditures
from Thomas Parrish, Daniel Kaleba, Michael Gerber, and Margaret McLaughlin,
Special Education: Study of Incidence of Disabilities, American
Institutes for Research, September 1998; Parrish, et al., report 1985-86
data adjusted to 1996-97 dollars.
49 Managing Child
Welfare: An Analysis of Contracts for Child Welfare Service Systems.
The George Washington University Medical Center. February, 1999.
50 Industry Statistics.
Open Minds. Federal Spending on Children's Services Exceeds $11Billion
- Clinton Administration Proposes More Spending in FY 2000. March
1999.
Exhibit 7
U.S. Federal Child Welfare Spending (FY 1999-2000)
|
Programs
|
Services
|
FY 99
|
FY 2000
(Proposed)
|
|
Head Start
|
Provides comprehensive developmental services to low income children
(three to five years old).
|
$4.66 Billion
|
$5.267 Billion
|
|
Foster Care
|
Provides a range of services to youth with special needs that
are living in foster care homes.
|
$3.9 Billion
|
$4.5 Billion
|
|
Adoption Assistance
|
Provides subsidies for adopted children with special needs.
|
$869 Million
|
$1 Billion
|
|
Independent Living
|
Provides funding for youth who are 16 years of age or older and
are transitioning to independent living. Federal funds to states
support counseling, employment, education and daily living skills
training and assistance.
|
$70 Million
|
$105 Million
|
|
Social Service Block Grant
|
Promotes families and youths economic self-sufficiency, to
prevent and reverse neglect, to avoid or reduce inappropriate
institutionalization, and when necessary, refer children and adults
for institutional care.
|
$1.9 Billion
|
$2.4 Billion
|
|
Child Welfare
|
Prevention of out-of-home placements, alternative placement development
and reunification.
|
$292 Million
|
$292 Million
|
|
Total
|
|
$11.691 Billion
|
$13.564 Billion
|
Federal child welfare law currently permits use of grant funds for
health care only in limited circumstances. Substance abuse treatment
and mental health services are allowable only as "time-limited"
family reunification services." Under the law, states may claim
federal funds for such services only as long as the child is in foster
care and only for the first 15 months that the child is in such care.
Should the family continue to need these services in order to avoid
out-of-home care, or after a child returns home from such care, other
sources of funding must be found.51
Federal block grants supplement state funding for mental health and
substance abuse programs serving both adults and children. However,
these funds, particularly those for mental health, represent only a
small proportion of total state expenditures. Block grant funding in
fiscal year 1999 totaled $289 million for mental health and $1.58 billion
for substance abuse. In addition, $78 million was provided for childrens
mental health and $7 million in substance abuse funding was earmarked
for high-risk youth. The following provides funding for fiscal year
1998 and 1999, as well as fiscal year requests for 2000.52
51 Ibid.
52 Mental Health
Report. 1999 Business Publishers. February 5, 1999.
Exhibit 8: Funding for Mental Health/Substance Abuse
Programs
(Budget Authority in Millions)
|
Types of Grant
|
Fiscal Year 1998
Actual
|
Fiscal Year 1999 Estimate
|
Fiscal Year 2000
Requested
|
|
Mental Health Block Grant
|
275
|
289
|
359
|
|
Childrens Mental Health Services
|
73
|
78
|
78
|
|
Substance Abuse Block Grant
|
1,310
|
1,585
|
1,615
|
|
High-Risk Youth
|
6
|
7
|
7
|
VII. Advances in Service Delivery/Promising Approaches
Advances in Service Delivery
Seventeen years after the release of a landmark study reporting that
two-thirds of 3 million children with SED in the country were not receiving
the services they needed, and that many more were receiving inappropriate
care,53 much
progress has been made. The 1982 release of Unclaimed Children,
as well as other key indicators of childrens mental health needs, served
as a wake up call to people concerned about children and their mental
health.
One of the key findings of Unclaimed Children
was that traditional approaches used for serving children with multiple
behavioral problems were often too fragmented to meet their individual
needs. As a result, children were often inappropriately placed in restrictive
out-of-home treatment settings and/or in the child welfare or juvenile
justice systems. Current data reflects that despite successes, there
is still a significant gap between children in need of mental health
services and those actually receiving treatment. In addition, one study
suggests only 11 percent of children at risk receive services in a mental
health setting.54
In the last two decades the scope and nature of mental health services
for children and families have undergone significant changes in philosophy,
administration and operation of services.55
There have been two major change agents in the delivery of behavioral
heath services to children: the introduction of the "system of
care philosophy," and the broad use of managed care. The following
briefly highlights key issues related to these two developments.
53 Knitzer, Jane.
The Failure of Public Responsibility to Children and Adolescents of
Mental Health Services, Unclaimed Children. 1982.
54 Manderscheid,
R. and Sonnenschein, M.A.. Mental Health, United States, 1994. Meta-Analysis
Study. United States Department of Health and Human Services, Substance
Abuse and Mental Health Services Administration, Center for Mental
Health Services. 1996.
55 Davis, Yelton,
Katz-Leavy, Lourie. Unclaimed Children Revisited: The Status of
State Children's Mental Health Service Systems. 1993.
The System of Care
The system of care philosophy holds that:
A comprehensive spectrum of mental health services and other necessary
services which are organized into a coordinated network to meet the
multiple and changing needs of children and adolescents with severe
emotional disturbances and their families.56
One of several important components of the system of care philosophy
is that children should receive treatment in community-based programs
that offer less restrictive, more normative environments. This philosophy
also acknowledges, however, that 24-hour institutional care is necessary
for certain children at various points in time.
The principles underlying the system of care were developed for the
SED population, and now have been largely accepted by providers, families,
and professionals specializing in care for SED children and youth.57
The services needed for system of care capacity also provide a template
for the service needs of the broader population of children needing
treatment. The following identifies key nonresidential and residential
services that form the recommended continuum of care.
Exhibit 9
System of Care Services
|
Nonresidential Services
|
Residential Services
|
|
Prevention
|
Therapeutic foster care
|
|
Early identification and intervention
|
Therapeutic group care
|
|
Assessment
|
Therapeutic camp services
|
|
Independent living services
|
Independent living services
|
|
Outpatient treatment
|
Residential treatment services
|
|
Home-based services
|
Crisis residential services
|
|
Day treatment
|
Home-based services
|
|
Emergency services
|
Inpatient Hospitalization
|
56 Stroul. B. Children's
Mental Health. Creating Systems of Care in a Changing Society. 1996.
57 Community-Based
Mental Health Service for Children in the Child Welfare System, Macro
International Inc. June 30, 1992.
Managed Care
The penetration of managed care techniques in the public sector has
emphasized providing cost-effective services. This emphasis has encouraged
the shift of delivery of care from inpatient to outpatient settings,
and the use of management techniques to decrease inpatient lengths of
stay. The positives and negatives associated with managed behavioral
care services for children have received significant attention.58
Managed care models are thought to encourage:
- More integrated intake, diagnosis and assessment of children and
youth with multiple problems;
- A unified network of agencies providing care for children with serious
problems;
- Pooling of resources across categorical budgets;
- Use of less costly but effective community-and home-based services.
Conversely, many observers believe managed care has created or exacerbated
problems:
- Too limited focus on cost containment may lead to implementation
without key elements of an effective service delivery system in place;
- Inadequate cost allocation models and capitation formulas, together
with the historic underfunding of childrens services, can result
in rates that are not sufficient to provide needed care;
- Fiscal incentives may be created for the managed care contractor
to re-label problems in order to shift responsibility to other systems,
particularly for children and youth needing costly services;
- Short-term contracts do not provide incentives for early intervention
and treatment, and may in fact create incentives to deny treatment.
58 Scallet, L., Brach,
C., and Steele, E., Managed Care: Challenges for Children and Family
Services. 1996. Prepared by the Policy Resource Center for the Annie
E. Casey Foundation. Stroul, B. Managed Care and Children's Mental
Health: Summary of the May 1995 State Managed
Care Meeting. 1996. National Technical Assistance Center for Children's
Mental Health, Georgetown University.
Current Promising Approaches
School administrators, educators, and policymakers face numerous challenges
in appropriately identifying and serving children with behavioral health
problems. School-based health centers (SBHCs), which primarily serve
the physical, and mental health needs of high risk, low-income children,
have been successful in providing preventive care and referral to children
with mental health needs. There are currently 1,154 SBHCs across the
country.59 Some
additional promising responses identified by experts include:60
- Making crisis intervention and other mental health support services
more broadly available to children in both regular and special education.
This can be achieved either through contracts with outside mental
health agencies or through the reallocation of the tasks of school
mental health personnel, now largely dedicated to assessment and evaluation
for special education.
- Ensuring that pre-referral strategies are sufficiently powerful
to address the needs of children exhibiting behavioral and emotional
problems, as well as learning disabilities.
- Providing in-service and pre-service training to regular education
teachers as well as workshops for school-board members and other school
board personnel designed to demystify SED in children and to facilitate
appropriate referrals.
- Strengthening the policy commitment to enhance collaboration between
schools and mental health agencies.
- Encouraging the formation of parent support and advocacy groups
and expanding opportunities for parents to collaborate in school-related
efforts to help their children.
- Examining current fiscal strategies at all levels of government
to ensure that all of the available dollars for services are being
used in the most cost-effective ways, and to develop strategies to
increase necessary resources.
- Ensuring an adequate supply of appropriately trained educators and
mental health personnel are available in the schools.
- Establishing model high intensity school-based interventions, particularly
in schools experiencing high rates of sexual and physical abuse among
young children and high rates of substance abuse among children and
adolescents or their parents.
Members of the NAPHS provide services to children and youth along
a continuum of care, based on a continuum of need (i.e., ranging
from children with SED to those with less serious disorders). Over a
period of years, this continuum has broadened from the traditional inpatient
hospital to include a variety of less intensive and restrictive services
consonant with the evolving state of the art.
NAPHS members together with other providers continue to deliver inpatient
and long-term residential treatment to youth in need of these services,
as well as provide community-based services that incorporate a system
of care philosophy in their delivery approach. Recent findings from
NAPHSs annual survey demonstrate its increased focus on outpatient,
community-based programs. In 1997, nearly 1 in every 4 admissions was
to a service other than inpatient hospitalization, compared to just
1 in 10 admissions in 1992. In addition, the vast majority of member
survey respondents provided partial hospitalization (91 percent) and
outpatient services (82.4 percent), and more than half of respondents
provided residential treatment (54.8 percent).61
The following exhibit describes some of the types of services
provided by NAPHS members that are outside the scope of the traditional
inpatient and outpatient services and generally considered key in the
system of care philosophy.62
Exhibit 10
Examples of NAPHS Services
|
Type of Service
|
Program Characteristics
|
|
Day Treatment
|
- Falls in the middle of continuum of care, between inpatient
and outpatient
- Setting varies from hospital-based to school-based
- Considered most intensive of long-term, non-residential MH
services available to children
- Can include special education, counseling, vocational, crisis
intervention, recreational, etc.
|
|
Day Treatment Models in Schools
|
- Educational assessment and planning
- Special schools that provide full-day educational
programs
- On-site mental health services linked to in-home
services for families, and full-time residential schools
|
|
Therapeutic Foster Care
|
- Least restrictive form of care among residential services
- Provides treatment for troubled children within private homes
of trained families
- Combines family-based care with specialized treatment
- Relatively new form of treatment
- Highly individualized
- Generally a low number of children in the home
|
|
Youth Corrections
|
- Designed for youth on probation for minor offenses or youth
who have been adjudicated through the courts
- Some corrections programs take form of wilderness-type programs,
while others are secured residential programs
|
|
Home-Based Services
|
- Delivered primarily in familys home
- Committed to family preservation and reunification
- "Ecological" perspective and involve
working with the community
- Service delivery hours are flexible to meet
needs of families
- Multifaceted services; education, counseling,
skill training, etc.
- Relationship between home-based worker and
family is uniquely close
|
|
Respite Services
|
- Provided both in childs home and in out-of-home settings
by trained respite providers
|
|
Group Homes for Specific Populations
|
- Created for children and adolescents who cannot function in
the family setting, but do not require institutional or residential
care
- Child is maintained in the community and continues to be involved
in community life up to his/her best ability
- Typically limited to eight or fewer residents
|
|
Independent Living
|
- Residential programs helping young adults ages 18 to 25 successfully
achieve independence
- Assist youth in planning for education and career; and working
to resolve personal and family problems
|
59 Literature Review:
Key Issues for School-Based Health Centers in Providing Mental Health
Services in a Managed Care Environment. The Lewin Group and WESTAT.
January 12, 1999.
60 Knitzer, J., Steinberg,
Z., Fleisch, B. At the Schoolhouse Door. An Examination of Programs
and Policies for Children with Behavioral and Emotional Problems.
1990.
61 Trends in Behavioral
Healthcare Systems: A Benchmarking Report. The National Association
of Psychiatric Health Systems. 1998 Annual Survey Report.
62 NAPHS Interviews
and Kutash, K. Rivera, V.R. "What Works in Children's Mental Health
Services?" Uncovering Answers to Critical Questions. 1996.
VIII. Key Problems Still Remain in Addressing Behavioral Health Needs
of Youth
From this overview, it is clear that much has been learned about what
types of services and programs are effective in meeting the needs of
children and youth. A wide variety of agencies and resources are available.
Nevertheless, some key problems remain that frustrate efforts to address
childrens behavioral health needs. This section reviews some of the
most important of these problems, reported from the vantage point of
NAPHS service providers daily experience.
Lack of Needed Services
The effort to control costs in both public programs and private
health insurance has created enormous pressures to constrain funding.
While these pressures have increased the emphasis on providing services
efficiently and cost-effectively, they also have in many instances led
to under-funding of important services and denial of needed
care.
Several members of the NAPHS Youth Service
Committee report that a number of their treatment facilities for children
- be it an inpatient facility or a "wilderness program," consistently
maintain full occupancy. They report that they are often forced
to place children on long waiting lists for services. A recent Los
Angeles Times article profiled a parent in desperate need of a 24-hour
supervised care and treatment facility for her child, who had been diagnosed
with autism and attention deficit hyperactivity disorders.
The Ventura county woman (Tina) in the article reported that by
age 6 her 10-year old son was "totally out of control,
hitting people frequently, banging his head against the wall and screaming
continuously. He couldnt function and I couldnt get him into a hospital."
Approximately1,800 children with emotional, mental and behavioral disorders
are being served by the Ventura County mental health department, according
to the article. The county, however, only has one residential treatment
facility and one state hospital in California that will accept emotionally
disturbed youths on a long-term basis. The Ventura county mother reported
that her son is currently living at home because there are no facilities
that have an opening.
"While Tina (mother) and other parents support the countys
policy of keeping mentally and emotionally troubled youths at home
and out of mental hospitals if possible, they contend that the county
lacks sufficient inpatient facilities with 24-hour supervised care
and treatment. Without these support services they fear their children
could ultimately land in another sort of institution Juvenile Hall."
Fragmented Systems of Care
According to many studies, children and adolescents with serious mental,
emotional or behavioral health disorders are poorly served by the various
public agencies that provide their care.63
Given the array of diverse settings in which childrens mental health
problems are treated and prevention is attempted, it is not surprising
that agencies and providers of care continue to struggle with fragmentation
in service delivery.
Several NAPHS members report that the majority of the children and
adolescents they are providing care to lack access to coordinated behavioral
health services as they need them. Many children are forced to remain
in an inappropriate treatment setting because the multiple payers of
services do not agree on the appropriate treatment for the child at
a given point in time.
For example, a child welfare agency may identify a child that is being
abused and determine the child needs to be placed in a residential treatment
facility. Medicaid or a public sector managed care entity, however,
may disagree with child welfare and refuse to pay for the service either
because the entity does not believe the care is necessary or appropriate,
or the entity is not allowed to reimburse for a particular service.
In the meantime, the child in need of a particular type of service is
either not receiving any sort of care, or is inappropriately directed
to receive care from a treatment setting because one of the payers has
agreed to cover it.
"The services should fit the needs of the child and family,
and instead, kids are frequently caught in the crossfire of the multiple
agencies disagreeing over what qualifies as appropriate care,"
said one NAPHS member. Another member stated, "In some situations,
it is impossible to place a child in the best program to meet their
needs because the decision must be based on whether or not a particular
payer is willing to reimburse a particular service."
This typical scenario places the providers of services in a very difficult
situation. NAPHS members report that they typically invest significant
staff resources in working with agencies to receive portions of funding
that pieced together, will cover a range of services for one child.
Specifically, one member said that of $25 million in facility operating
costs, $1 million is dedicated to pursuing payment approval for appropriate
services for children. NAPHS members stress that the more straightforward
the administrative mechanisms that pay for the services are, the easier
the provision of services will be.
Over the past decade, more and more states have made efforts to meet
the needs of children through comprehensive, multi-agency systems of
care and agreements that provide individualized services in a child-centered
and family-sensitive manner. Members reported that interagency agreements
could be helpful if the agencies reflected their commitment to providing
coordinated care through the following mechanisms: 1) resource allocations,
2) operational policies and regulations, 3) budget priorities, 4) financing
policies, and 5) administrative mechanisms.
One NAPHS member reported that while interagency agreements and collaboration
would be useful in addressing this problem, it is often difficult to
persuade child-serving agencies to participate in such agreements. He
said that although all of the agencies have a vested interested in the
well being of children, they find it difficult to work collaboratively
because of different philosophical approaches to providing care and
fears of forfeiting control over how dollars are spent.
63 Stroul. B. Children's
Mental Health. Creating Systems of Care in a Changing Society. 1996.
Community-Based Mental Health Service for Children in the Child Welfare
System, Macro International Inc. June 30, 1992.
Inflexible Funding Streams
Allocations for child serving agencies are governed by a host of federal
mandates, regulations, reimbursement rules, and categorical funding
restrictions. NAPHS members report that these restrictions often create
difficulties in providing appropriate care to children and their families.
Because many local and state mental health programs are not required
to cover all children that are living with serious mental health problems,
children are often placed on long waiting lists for services from mental
health agencies. A recent article in the Chicago Tribune reports
that an unpublished study by the Bazelon Center for Mental Health Law
suggests that parents of mentally ill youth are turning their children
over to child welfare agencies to secure mental health services.
This emerging trend, coupled with comments
from NAPHS members, indicate that Title IV-E dollars are a critical
source of funding for childrens mental health services, but limitations
on the use of these funds often conflict with evolving "systems
of care" and "wrap-around" models. For example, while
there is much evidence that parents who place children in state custody
are often dealing with some level of dysfunction themselves, (i.e.,
alcohol or other substance abuse problems), Tile IV-E funds restrict
the use of dollars to provide counseling and treatment to parents.
Recruitment and Retention of Front-Line Staff
NAPHS members report serious concerns regarding a number of issues
related to the recruitment and retention of front-line staff (i.e.,
case managers, social workers, child psychiatrists64
) in their child/adolescent treatment facilities and programs across
the country. Members consider qualified front-line staff to be one of
the most valuable resources they have in implementing effective treatment
programs for children and adolescents.
"The front-line staff members are the individuals that are
dealing with the every day emergencies from a child physically attacking
another child to a teenager refusing to take his medications. These
individuals are also the ones that can make the most significant changes
in a childs life," said one NAPHS member.
NAPHS members said that it is extremely difficult to maintain highly
qualified staff for several key reasons:
- Inadequate salaries;
- Unmanageable caseloads leading to persistent stress;
- Staff frustration with the various public and private sector bureaucracies;
and
- Staff dissatisfaction with the lack of resources necessary to make
a difference in the outcomes of the lives of children.
64 Several reports
have focused on the number of child and adolescent psychiatrists in
the United States (American Academy of Child Psychiatry, 1983; Council
on Graduate Medical Education, 1990; Graduate Medical Education National
Advisory Council/GMENAC, 1980). While estimates vary on the magnitude
of need, the studies are in agreement that there is and will continue
to be a serious shortage of child and adolescent psychiatrists. The
1980 GMENAC estimated there would be only 45 percent of the needed
child psychiatrists in 1990. Anticipating a much larger need, the
Council on Graduate Medical Education in 1990 calculated the number
of child psychiatrists met only a tenth of the demand and that the
shortage would continue into the foreseeable future.
Conclusions
Based on this review, the
following conclusions suggest some avenues for future efforts to improve
services for children and youth with behavioral health disorders.
- Highly publicized acts of school violencewhile raredo present
an opportunity to bring issues surrounding youths mental health needs
to the forefront of public and policy-makers attention. However,
the far more common instances of children and youth whose problems
lead them to do poorly in school or simply drop out may be difficult
to highlight without stigmatizing them as "potentially violent."