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Chapter 18
Parental Reports of Emotional or Behavioral Difficulties and Mental Health
Service Use among U.S. School-Age Children
Patricia N. Pastor
Cynthia A. Reuben
Anna Falkenstern
National Center for Health Statistics, Centers for Disease Control and Prevention
Introduction
The 1999 U.S. Surgeon General’s Report on Mental Health identified mental
health (MH) as an essential condition for children’s development and well-being
(U.S. DHHS, 1999). During the course of a year, approximately 20 percent of
children have symptoms of a diagnosable clinical disorder and about 5 percent
symptoms causing serious functional impairment (Leaf et al., 1996). Unfortunately,
mental disorders in children are often undetected and therefore remain untreated
(Leaf et al., 1996; Zahner, Pawelkiewicz, DeFrancesco, & Adnopoz, 1992).
Unmet MH care needs can have serious consequences for children and their families:
strained social relationships, poor academic
performance, and serious problems in adulthood. Longitudinal studies of children
with mental disorders have documented an increased risk of dropping out of school,
alcohol and drug use, and criminal activity later in life (Buka, Monuteauz,
& Earls, 2002). Further, children with mental disorders are at increased
risk for suicidal behavior (Shaffer & Craft, 1999).
Information collected from parents is important for identifying child MH symptoms
and disorders in both clinical and research settings. Many survey measures of
child MH are based exclusively on parental reports. Past research has shown
that parents frequently identify symptoms associated with behavioral and learning
disorders (Glascoe, 1991, 2000). By contrast, parents may provide less information
about symptoms related to the internalizing
disorders of children such as anxiety and depression (Teagle, 2002). Also, parents
may have less information about the symptoms
of older children than younger children because the symptoms may be less overt
as children grow older and may often occur in settings outside of the home (Achenbach,
Dumenci, & Rescorla, 2002; Verhulst et al., 2003). However, parents of both
younger and older children play a key role in identifying symptoms and initiating
care for mental disorders and, as a result, can provide detailed information
about MH service use (Costello, Pescosolido, Angold, & Burns., 1998). Moreover,
because of their central role in children’s lives, parents can also supply
detailed information about health insurance coverage and other sociodemographic
characteristics (Simpson, Scott, Henderson, & Manderscheid, 2004).
This chapter provides an overview of children’s mental symptoms by examining
parental reports of emotional or behavioral difficulties. The specific topics
covered in the chapter include (1) a description of the prevalence of emotional
or behavioral difficulties among all children 4–17 years of age and the
prevalence among children in major sociodemographic subgroups, (2) an examination
of the association between emotional or behavioral difficulties and three disorders:
attention deficit hyperactivity disorder (ADHD), learning disability, and developmental
delay, and (3) an analysis of MH service use by children with and without emotional
or behavioral difficulties.
Data and Methods
This chapter presents data from the 2001–2003 National Health Interview
Survey (NHIS), a continuous household survey of a nationally representative
sample of the U.S. noninstitutionalized, civilian population (Botman,
Moore, Moriarity, & Parsons, 2000). In-person
household interviews are used to obtain a wide range of information, including
health conditions, health insurance coverage, use of a variety of health care
services, and sociodemographic characteristics. A knowledgeable adult, usually
a parent, provides information for children. In each sample family with children,
one child 0–17 years of age is randomly selected, and additional detailed
questions are asked about this child’s health status and use of health
care services. No identifying information is maintained on the particular child
sampled.
This chapter presents estimates based on information about children in the
child sample of the 2001–2003 NHIS. The child sample response rate, reflecting
the response rate at the household, family, and sample child levels, was 81
percent in 2001–2003. The results presented in this chapter describe the
health and health care use of 28,415 children 4–17 years of age for whom
complete information for the sociodemographic, health, and health care variables
was included in the analysis. The results exclude information for 827 children
who had missing data. Because most (92 percent) of the respondents for children
were parents, all respondents hereafter are referred to as parents.
The results in this chapter are based on the weighted sample results and represent
national estimates for the U.S. noninstitutionalized, civilian population. SUDAAN
statistical software was used in all analyses to adjust for the effects of the
complex sampling design (Shah, Barnwell, & Bieler, 1997). Chi-square tests
were used to assess associations between variables and pairwise t-tests were
performed to evaluate differences between estimates. Results are reported as
statistically significant when the probability of a test statistic was less
than 0.05. Additional information on the survey methods, questionnaires, and
sampling procedures of the NHIS are available from the National Center for Health
Statistics (NCHS) Web site at http://www.cdc.gov/nchs/nhis.htm.
Questions About Emotional or Behavioral Difficulties
Beginning in 2001, the parent report version of the Strengths and Difficulties
Questionnaire (SDQ) (Bourdon, Goodman, Rae, Simpson, & Koretz, 2005;
Goodman, 1994) was added to the sample child questionnaire of the NHIS. The
SDQ is a multi-question screening
instrument that measures MH symptoms as well as impact and burden associated
with these symptoms. This analysis focuses on the responses of parents to a
single question about the child’s emotional or behavioral difficulties:
"Overall, do you think that (sample child) has difficulties in any of
the following areas: emotions, concentration, behavior, or being able to get
along with other people?" The question on overall difficulties is scored
on a 4-point scale, 0 = "No,"
1 = "Minor difficulties," 2 = "Definite difficulties,"
and 3 = "Severe difficulties." The present analysis combines the
responses of definite and severe difficulties
into a single category.
Questions About Diagnosed Disorders
Parents were also asked questions about specific disorders related to behavior
and learning: "Has a doctor or health professional ever told you that
(child) had: Attention Deficit Hyperactivity Disorder or Attention Deficit Disorder?
Mental retardation? Any other developmental delay? Autism? Down’s Syndrome?"
and "Has a representative from
a school or a health professional ever told you that (child) had a learning
disability?" Children with "any" diagnosed disorder include
those with ADHD, mental retardation, autism, Down’s syndrome, other developmental
delay, or learning disability. In this analysis, children classified as having
a diagnosis of developmental delay include only children with developmental
delays other than mental retardation, autism, or Down’s syndrome.
Questions About Use of Health Care and Educational Services
Parents answered questions about three measures of MH service use: (1) the
parent’s contact with any MH professional, such as a psychiatrist, psychologist,
psychiatric nurse, or clinical social worker, about the child during
the past 12 months; (2) the parent’s contact with a general doctor about
an emotional or behavioral problem of the child during the past 12 months; and
(3) current receipt of special education services for an emotional or behavioral
problem. In the questions about MH services, parents were asked about "problems"
rather than "difficulties".
Both problems and difficulties refer to symptoms that cause some level of functional
impairment. Additional measures of health
care service use covered in the analysis include: regular use of any type of
prescription medication for at least
3 months and a parent’s contact with a medical specialist, defined as
a medical doctor who specializes in a
particular medical disease or problem (other than obstetrician/gynecologist,
psychiatrist or ophthalmologist) about the child during the past 12 months.
A parental report of contact with a health care provider does not necessarily
indicate that a child was evaluated or treated. In this analysis, the term "contact"
refers to a parent either seeing or talking to a health care provider about
the child.
Sociodemographic Variables
Parents also provided information about a child’s sex, age, race/ethnicity,
family income, family structure, and health insurance coverage. A child’s
age is categorized as 4–7 years, 8–10 years, 11–14 years,
or 15–17 years. Children under 4 years of age are not included in this
analysis since the identification of MH difficulties usually occurs after a
child begins elementary school. The question about Hispanic ethnicity was asked
before the question regarding a child’s single or multiple race(s). Children
classified as Hispanic may be of any race. The categories
of "Non-Hispanic white"
and "Non-Hispanic black"
include only children of a single race. Because the number of children of "other
races" (non-Hispanic children
of single races other than white or black and non-Hispanic
children reported to have more than one
race) was small, this category is not shown in the tables.
A child’s family structure is based on the presence or absence of parents
(biological, adoptive, step, or foster)
in the family. Estimates are shown for families with only a mother present and
those with two parents present. Because
the number of children in families with only a father present or no parents
present was too small to produce reliable estimates, these categories are not
shown in the tables. A child’s poverty status is based on the ratio of
family income to the federal poverty threshold given family size and composition.
The poverty status categories include poor (family income less than 100 percent
of the poverty threshold), near poor (family income 100–199 percent of
the threshold), and nonpoor (family income 200 percent or more of the threshold).
Due to the substantial percentage of children (26 percent) with missing information
for family income, unknown values for family income were estimated using a multiple
imputation procedure (Schenker et al., 2004).
Health insurance coverage at the time of interview is categorized into three
groups: private, Medicaid, and no insurance. Children with private insurance
are covered by private plans provided in part or full by an employer or union,
or purchased directly. The private insurance category includes managed care
plans, other types of government-sponsored
insurance such as coverage for military dependents and the combination of both
private and Medicaid insurance. Children with Medicaid coverage have coverage
only under the State Children’s Health Insurance
Program (SCHIP) or other state-sponsored
plans. Uninsured children have neither private insurance nor Medicaid. Finally,
a child’s residential location was classified by metropolitan status.
The definition of the metropolitan status
categories corresponds to the 1993 definition by the Office of Management and
Budget of a metropolitan statistical
area (MSA). The categories include residence in a central city of an MSA, a
suburban area in an MSA that is not in central city, and an area outside of
an MSA (Office of Management and Budget, 1990).
Results
Prevalence of Emotional or Behavioral Difficulties
Approximately 5 percent of children 4–17 years of age (2.8 million)
had parental reports of severe/definite emotional or behavioral difficulties
during the past 6 months and 17 percent (9.3 million) had reports of minor difficulties
(figure 18.1, table
18.1). A higher percentage of boys than girls had difficulties at both levels
of severity (severe/definite and minor).
Among boys and girls, the percentage reported to have difficulties increased
with age (figure 18.2).
Parents reported difficulties among children 4–7 years of age less often
than among children 8–17 years of age (table
18.1).
The prevalence of emotional or behavioral difficulties varied with other characteristics
of children and their families (table 18.1).
Hispanic children were less likely to have parental reports of difficulties
at either level of severity compared with non-Hispanic
white or non-Hispanic black children.
Non-Hispanic black children were
as likely as non-Hispanic white
children to have severe/definite difficulties, but were more likely to have
parental reports of minor difficulties. The percentage of children in mother-only
families with severe/definite difficulties was double the percentage reported
for children in two-parent families
(8 percent vs. 4 percent). Children in mother-only
families were also more often described as having minor difficulties compared
with children in two-parent families
(22 percent vs. 15 percent).
Children living in poor and near poor families had higher rates of severe/definite
and minor difficulties than children in nonpoor families (table
18.1). Nearly twice the percentage of poor children had parental reports
of severe/definite difficulties as nonpoor
children (7 percent vs. 4 percent). Children with Medicaid coverage had higher
rates of difficulties than uninsured children or children with private health
insurance. The percentage with severe/definite
difficulties was 9 percent of Medicaid insured children compared with 4 percent
of privately insured children and 5 percent of uninsured children. The percentage
of children with difficulties varied less by the child’s place of residence.
Children living in metropolitan areas outside of the central city (MSA/not CC)
were less often reported by parents to have severe/definite difficulties than
children living either in the central cities of metropolitan areas
(MSA/CC) or outside of metropolitan areas (not MSA).
Diagnosed Disorders Related to Behavior or Learning
Overall, 12 percent of children 4–17 years of age (6.8 million) were
reported to have been diagnosed with at least one of the following disorders:
ADHD, learning disability, mental retardation, autism, Down’s syndrome,
or developmental delay. Nearly 7 percent (3.9 million) had ever been diagnosed
with ADHD and 8 percent (4.4 million)
with learning disability. A substantially lower percentage of children, 3 percent
(1.7 million), had ever been diagnosed with developmental delay. As figure
18.3 shows, the percentage of children with ADHD, learning disability, or
developmental delay was strongly associated with a child’s level of emotional
or behavioral difficulty. Among boys with severe/definite difficulties, 59 percent
had ever been diagnosed with ADHD, 48 percent with learning disability, and
21 percent with developmental delay. Among boys with minor difficulties, a substantial
percentage had ever been diagnosed with ADHD (22 percent) or learning disability
(22 percent), and about 7 percent had ever been diagnosed with developmental
delay. Finally, among boys with no difficulties, less than 4 percent had parental
reports of any of the diagnoses. Similarly, among girls, diagnosed disorders
were most often reported for those with severe/definite difficulties and least
often for those with no difficulties.
At all levels of emotional or behavioral difficulties, boys more often had
reports of ADHD than girls. Among children with severe/definite difficulties,
the percentages of boys and girls with diagnoses of learning disability and
developmental delay were similar. Among children with minor difficulties, girls
were less often reported to have learning disability, but were as often reported
to have developmental delay. Among children with no difficulties,
boys more often had parental reports of learning disability or developmental
disability.
Use of Mental Health and Other Health Care Services
Overall, 10 percent of children 4–17 years of age (5.4 million) used
a MH service. Use of MH services was strongly associated with a child’s
level of difficulties (figure 18.4). Among children
with severe/definite difficulties, 62 percent had used a MH service: approximately
45 percent had contact with a MH professional, 40 percent had contact with a
general doctor because of the child’s emotional or behavioral problems,
and about 23 percent received special education services because of emotional
or behavioral problems. Among children with minor difficulties, 23 percent had
used a MH service: 16 percent had contact with a MH professional, 11 percent
had contact with a general doctor because of the child’s emotional or
behavioral problems, and less than 5 percent had received special education
services because of emotional or behavioral problems. Among children with no
difficulties, approximately 4 percent had used a MH service.
Among children with severe/definite difficulties, the relationship between
sociodemographic characteristics and use of MH services varied by the type of
service (table 18.2). A similar percentage of
boys and girls had contact with either a MH professional or a general doctor
because of an emotional or behavioral problem. However,
boys were more likely than girls to use special education services because of
an emotional or behavioral problem. The relationship between a child’s
age and MH service use also differed by the type of service. Children
4–7 years of age were less likely than children 8 were less likely 17
years of age to have contact with either a MH professional or receive special
education services because of an emotional or behavioral problem. In contrast,
children 15–17 years of age were less likely than children 4–14
years of age to have contact with a general doctor because of an emotional or
behavioral problem.
Among children with severe/definite difficulties, the percentage of non-Hispanic
white children having contact with a
MH professional (51 percent) was considerably higher than the percentage of
non-Hispanic black or Hispanic
children (30 and 39 percent) (table 18.2). Similarly,
the percentage of non-Hispanic
white children having contact with a
general doctor because of an emotional or behavioral problem (44 percent) was
higher than the percentage of non-Hispanic
black and Hispanic children (25 and 29 percent, respectively). The percentage
of children receiving special education services because of an emotional or
behavioral problem did not vary by race/ethnicity. A child’s poverty status
tended to be associated with the use of health care services, but not the use
of special education services. By contrast, a child’s insurance coverage
was related to the use of all three types of services. Children with private
and public insurance coverage more often had contact with a MH professional
or general doctor because of an emotional or behavioral problem than children
without insurance. Children with Medicaid
received special education services because of an emotional or behavioral problem
nearly twice as often (30 percent) as privately insured (19 percent) or uninsured
children (18 percent). Neither family structure nor residential location was
significantly related to the use of MH services.
While the use of MH services was lower among children with minor difficulties
than children with severe/definite difficulties,
the overall pattern of use was similar (table 18.2).
Parents reported more often that boys received special education services because
of an emotional or behavioral problem than girls. A lower percentage
of children 4–7 years of age had contact with a MH professional than children
8–17 years of age. A lower percentage of Hispanic children compared with
non-Hispanic white children had
contact with a mental health professional or general doctor because of an emotional
or behavioral problem, and a lower percentage of Hispanic
children compared with non-Hispanic
black children received special education services because of an emotional or
behavioral problem. A higher percentage of children in mother-only
families reported using any of the MH services than children in two-parent
families. Children with private insurance or Medicaid reported greater use of
services because of an emotional or behavioral problem than uninsured children.
Children with Medicaid were nearly twice as likely to receive special education
services because of an emotional or behavioral problem as privately insured
or uninsured children. Use of MH services among children with minor difficulties
was unrelated to poverty status or residential location.
Use of other types of health care services also varied with a child’s
level of emotional or behavioral difficulty. Among children with severe/definite
difficulties, 48 percent used some type of prescription medication and 25 percent
had contact with a medical specialist. Among children with minor difficulties,
the percentage using each of these services was much lower: 23 percent used
prescription medication and 17 percent had contact with a medical specialist.
Finally, among children with no difficulties, use of these services was even
less frequently reported: 10 percent used prescription medication and 11 percent
had contact with a medical specialist.
Discussion
Monitoring the prevalence of child MH symptoms with data from large national
health surveys requires the development and validation of brief and reliable
measures of child MH. In 2001, a question from the SDQ about a child’s
overall emotional or behavioral difficulties was added to the NHIS as a measure
of the prevalence of MH symptoms among children (Simpson, Bloom, Cohen, Blumberg,
& Bourdon, 2005). Results from a previous study by Goodman (1999) indicated
that parental responses to the question on overall difficulties differed markedly
for children with and without diagnosed mental disorders. While it is unknown
whether parental responses indicating severe/definite emotional or behavioral
difficulties can be used as an indicator of a psychiatric disorder causing functional
impairment, the overall percentage of children with severe/definite difficulties,
approximately 5 percent, is similar to the percentage of children in the Methods
for the Epidemiology of Child and Adolescent Mental Disorders (MECA) study reported
by parents to have a psychiatric disorder with moderate to severe impairment
(5.5 percent) (Shaffer et al., 1996). Another indication that parental reports
about difficulties may indicate the presence
of impairing MH symptoms is the finding from the present analysis, that nearly
70 percent of the children with reports of severe/definite difficulties had
previously been diagnosed as having ADHD, learning disability, or developmental
delay.
The associations between parental reports of emotional or behavioral difficulties
and a variety of sociodemographic variables
also suggest that these reports provide a useful indicator of child MH symptoms.
At both levels of severity (severe/definite and minor), more difficulties were
reported for boys and fewer difficulties for young children 4–7 years
of age. These sex- and age-related
differences are similar to findings from several other large-scale
epidemiologic studies of child MH such as the Ontario Child Health Survey (Offord
et al., 1987), the Great Smokey Mountain Study (Costello et al., 1996), the
Virginia Twin Study of Adolescent Behavioral
Development (Simonoff et al., 1997), and the British Child Mental Health Survey
(Meltzer, Gatward, Goodman, & Ford, 2000).
The large size of the child sample from the 2001–2003 NHIS made it possible
to examine the prevalence of MH difficulties and the use of services among children
in specific subgroups defined by race/ethnicity, poverty status, and health
insurance coverage. Past studies of the association between race and child MH
problems have generally reported insignificant differences (Costello et al.,
1996; U.S. DHHS, 2001). The results of investigations
comparing the MH of Hispanic and non-Hispanic
white children have reported, in some cases, more problems among Hispanic children
(Achenbach et al., 1990; Glover, Pumarieaga, Holzer, Wise, & Rodriguez,
1999) and, in other cases, similar problems for Hispanic and non-Hispanic
children (Vega, Khoury, Zimmerman, Gil, & Warheit, 1995). Results from the
2001–2003 NHIS indicate that parents of Hispanic children less often reported
severe/definite difficulties than the parents of either non-Hispanic
white or non-Hispanic black children.
Whether these ethnic differences in parental reports reflect true variations
in child behavior and adjustment is uncertain. The impact of stigma, language
difficulties, and barriers to health care are possible factors related to the
lower prevalence of reported difficulties among Hispanic children (Glascoe,
2003; U.S. DHHS, 2001).
The significantly higher percentage of poor and near poor children as compared
with nonpoor children reported to have
severe/definite difficulties mirrors the findings from previous investigations
(Costello, 1989; Wadell et al., 2002). The multiple stresses and limited support
experienced by children in poor and near poor families may also be a factor
that partially accounts for the higher prevalence of difficulties reported for
children in mother-only families
than children in two-parent families.
Access to care is another factor that may facilitate parental recognition of
child MH problems (Costello et al., 1998). The higher prevalence of MH difficulties
observed among Medicaid insured children
compared with privately insured and uninsured children has been documented in
previous studies (Witt, Kasper, & Riley, 2003). A number of explanations
have been suggested for the increased prevalence of MH difficulties among children
with Medicaid: a greater tendency of the families of children with MH difficulties
to enroll in Medicaid, the effects of access to care on parental perceptions
of MH symptoms, and the adverse effects of poverty on child MH.
A child’s race/ethnicity, poverty status, and health insurance coverage
were factors strongly associated with the use of MH services among children
with emotional or behavioral difficulties. These results are similar to the
findings from other studies that have described much less use of health care
services for MH problems among non-Hispanic
black, Hispanic, and poor children (Alegria et al., 2002; Cuffe, Waller, Cuccaro,
Pumariego, & Garrison, 1995; Cunningham
& Freiman, 1996). The additional finding that race/ethnicity and poverty
were not associated with the use of special
education services for MH problems are also similar to the results of previous
research (Witt et al., 2003). These findings suggest that barriers to MH services
may be reduced in school settings. The
findings about heath insurance coverage and the use of services by children
with MH difficulties coincide with results
from a number of studies that have documented greater use of MH services by
children with private insurance or Medicaid coverage (Farmer Burns, Phillips,
Angold, & Costello, 2003; Sturm & Sherbourne, 2001). The observation
in the present analysis that children with Medicaid coverage were almost twice
as likely to be receiving special education services for MH problems as children
with either private insurance or those with no insurance coverage follows a
pattern previously described for school-aged
children with disabilities (Witt et al., 2003). Medicaid has become an important
source of funding for MH services in special education programs as well as services
provided by community-based health
care professionals (Rodman et al., 1999). Finally, the high percentage of uninsured
children with difficulties who do not appear to be receiving any services underscores
the continuing importance of this gap in the provision of child MH services
(Kataoka, Zhang, & Wells, 2002).
Limitations
Some limitations of the present study should be considered. This analysis
relied solely on information reported
by parents at a single point in time. Several studies have shown that obtaining
information from multiple informants, such as teachers, health professionals,
parents, and children, results in a more accurate assessment
of child MH symptoms (Achenbach, McConaughy, & Howell, 1987; Canino, Bird,
Rubio-Stipec, & Bravo, 1995).
Information collected directly from the child may be particularly important
for identifying some symptoms of both internalizing and externalizing disorders,
especially for adolescents (Verhulst et al., 1997). Further, a parental
report in household survey about a child’s emotional or behavioral difficulties
may be very different than an evaluation and diagnosis by a MH professional
(Flisher et al., 1997). Stigma and socioeconomic factors may lead some parents
to minimize or underreport a child’s symptoms (Fendrich , Johnson, Wislar,
& Nageotte, 1999; U.S. DHHS, 2001). Moreover, children in the institutionalized
population, including those in psychiatric hospitals and juvenile detention
facilities, were not included in the NHIS sample. While children in the institutionalized
population are more likely to have MH symptoms, the omission from the sample
of this small group of children probably had little effect on the estimation
of the national prevalence of child MH difficulties (U.S. Census Bureau, 2000).
Another limitation is the reliance on a series of single questions to measure
child MH difficulties and service use. The question on overall difficulties
does not capture the complexity, impact, and burden associated with a child’s
MH symptoms. Similarly, the questions about contacts with MH providers did not
ask parents for information about the
frequency, types, or quality of treatment that children received for MH problems.
Because the NHIS collects information at one point in time, associations observed
in the data cannot be used to determine causation. Moreover, since the sociodemographic
variables presented in this chapter are intercorrelated, the bivariate associations
may not reflect the independent effect of specific variables on the prevalence
of MH difficulties and service use.
Currently two validation studies of the SDQ are evaluating how well the items
in this instrument predict child MH. One study, directed by Alaattin Erkanli
and Jane Costello of Duke University, is comparing the performance of several
child MH screening instruments including the SDQ. The other study conducted
by Ronald Kessler of Harvard is a clinical calibration study of the SDQ that
is part of the adolescent segment of the National Comorbidity
Study. Results from both of these studies will provide guidelines for the interpretation
of parental reports in the SDQ.
Conclusions
In conclusion, the analysis of data from the 2001–2003 NHIS found that
nearly 22 percent of children 4–17 years of age had a parental report
of emotional or behavioral difficulties. Approximately 5 percent of children
were judged by parents to have severe/definite
difficulties. The prevalence of severe/definite difficulties varied with a child’s
sex, age, race/ethnicity, family structure, poverty status, health insurance
coverage, and residence. Among children with severe/definite difficulties, the
prevalence of diagnosed behavioral, developmental, and learning disorders was
markedly higher than the prevalence among children with no difficulties. The
use of health care and educational services because emotional or behavioral
problems was strongly associated with parental reports of emotional or behavioral
difficulties. However, even among children with severe/definite difficulties,
a substantial fraction did not receive MH services indicating the need for greater
access to this type of health care in communities and schools.
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