[Federal Register Volume 62, Number 193 (Monday, October 6, 1997)]
[Notices]
[Pages 52139-52145]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 97-26372]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Substance Abuse and Mental Health Services Administration
Estimation Methodology for Children With a Serious Emotional
Disturbance (SED)
AGENCY: Center for Mental Health Services, Substance Abuse and Mental
Health Services Administration, HHS.
ACTION: Solicitation of comments.
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SUMMARY: This notice describes the proposed methodology for identifying
and estimating the number of children with a serious emotional
disturbance (SED) within each State. This notice is being served as
part of the requirement of Public Law 102-321, the ADAMHA
Reorganization Act of 1992.
Comment Period: The Administrator is requesting written comments which
must be received on or before December 5, 1997.
Addresses: Comments should be sent to Judith Katz-Leavy, M.Ed., Senior
Policy Analyst, Office of Policy, Planning, and Administration, Center
for Mental Health Services, Parklawn Building Room 15-87, 5600 Fishers
Lane, Rockville, MD 20857. (301) 443-1563 fax.
For Further Information Contact: A detailed paper outlining the
estimation methodology described here is available from: Judith Katz-
Leavy M.Ed., Senior Policy Analyst, Office of Policy, Planning, and
Administration, Center for Mental Health Services, Parklawn Building
Room 15-87, 5600 Fishers Lane, Rockville, MD 20857. (301)443-1563 fax.
Background
Public Law 102-321, the ADAMHA Reorganization Act of 1992, amended
the Public Health Service Act and created the Substance Abuse and
Mental Health Services Administration (SAMHSA). The Center for Mental
Health Services (CMHS) was established within SAMHSA to coordinate
Federal efforts in the prevention, treatment, and promotion of mental
health. Title II of Public Law 102-321 establishes a Block Grant for
Community Mental Health Services (Block Grant) administered by CMHS,
which permits the allocation of funds to States for the provision of
community mental health services to children with a serious emotional
disturbance and adults with a serious mental illness. Public Law 102-
321 stipulates that States estimate the incidence (number of new cases)
and prevalence (total number of cases in a year) in their applications
for Block Grant funds, see 42 U.S.C. 300 (2). The statute also requires
the Secretary to establish definitions for adults with a serious mental
illness and children with a serious emotional disturbance. In addition,
the Secretary is required to develop standardized methods for the
states to use in providing the estimates required as part of their
block grant applications. See 42 U.S.C. 300 (2). As part of the process
of implementing this new block grant, definitions of the terms
``children with a serious emotional disturbance'' and ``adults with a
serious mental illness'' were announced on May 20, 1993, in Federal
Register Volume 58, No 96, p. 29422. Subsequently, a group of technical
experts was convened by CMHS to develop an estimation methodology to
``operationalize the key concepts'' in the definition of children with
a serious emotional disturbance. A similar group has prepared an
estimation methodology for adults with a serious mental illness.
Serious Emotional Disturbance (SED)
The CMHS definition is that ``children with serious emotional
disturbance'' are persons:
--From birth up to age 18;
--Who currently or at any time during the past year;
--Have had a diagnosable mental, behavioral, or emotional disorder of
sufficient duration to meet diagnostic criteria specified within DSM-
III-R
--That resulted in functional impairment which substantially interferes
with or limits the child's role or functioning in family, school, or
community activities (p.29425).
The definition goes on to indicate that, ``these disorders include
any mental disorder (including those of biological etiology) listed in
DSM-III-R or their ICD-9-CM equivalent (and subsequent revisions) with
the exception of DSM-III-R `V' codes, substance use, and developmental
disorders, which are excluded, unless they co-occur with another
diagnosable serious emotional disturbance'' (p. 29425).
Further, the definition indicates that, ``Functional impairment is
defined as difficulties that substantially interfere with or limit a
child or adolescent from achieving or maintaining one or more
developmentally-appropriate social, behavioral, cognitive,
communicative, or adaptive skills. Functional impairments of episodic,
recurrent, and continuous duration are included unless they are
temporary and expected responses to stressful events in their
environment. Children who would have met functional impairment criteria
during the referenced year without the benefit of treatment or other
support services are included in this definition'' (p. 29425).
The first decision that was made was to focus on community
epidemiological studies done in the United States that used either the
DSM-III-R, or its predecessor, the DSM-III, and that provided
information on the prevalence of mental disorders using a structured
interview procedure. The group decided that given the relatively small
number of community epidemiological studies that had been conducted in
the United States, it would be a mistake to exclude those few studies
that had used the DSM-III, given its considerable similarity to the
DSM-III-R.
The most frequently used structured interview procedure was the
Diagnostic Interview Schedule for Children (DISC), originally developed
by A. Costello and his colleagues (A. Costello, Edelbrock, Dulcan,
Kalas, & Klaric, l984), which includes both child and parent versions.
Other interview procedures include the Diagnostic Interview for
Children and Adolescents (DICA, Herjanic & Reich, l982), the Child and
Adolescent Psychiatric Assessment (CAPA, Angold & E. Costello, l995),
and the Composite International Diagnostic Interview (CIDI, Kessler et
al, 1994).
The group elected to consider that a child met the criteria of a
diagnosable disorder either if a diagnosis was obtained from his/her
own report on the structured interview, or from the parent's report on
the structured interview, or from the combination of the youth's report
and the parent's report, even if neither one met the criteria
separately. While there are other approaches to combining data from two
or more sources that were considered and have been used (Cohen, Velez,
& Kohn, l987; Reich & Earls, 1987), the group chose to use this
``either/or'' approach because it was believed that
[[Page 52140]]
discrepant responses can be a source of valuable information.
The greater challenge for the group was operationalizing the
concept of ``functional impairment which substantially interferes with
or limits the child's role or functioning in family, school, or
community activities'' (Federal Register, l993, p. 29425). Part of the
difficulty was in identifying appropriate measures, and understanding
the inter-relationship between the different measures, but the greatest
difficulty was in determining the appropriate threshold or cut-off
point on a scale for concluding that there was functional impairment
that was ``substantially'' interfering with functioning.
After much discussion, it was decided that in the absence of any
``gold standard'' that could be used as a basis for establishing such a
cut-off point, and in the absence of any social validation process that
has established a consensus on what the threshold should be, data would
be presented for cut-off points at two levels of functional impairment.
This has the benefit of providing additional information to planners
and policy-makers to use, and to stimulate further discussion and
research to try to better establish an appropriate threshold. The
higher prevalence rate to be reported, which uses the more inclusive or
less conservative cut-off point, still meets the definition of
``seriously emotionally disturbed.'' The less inclusive and more
conservative estimate can be used for more targeted efforts to plan on
behalf of a more limited number of children whose level of functional
impairment is especially severe.
A variety of measures of impairment were used in the community
studies, and their psychometric properties were reviewed for the group
by Hodges (l994). The most frequently used measure is a global measure,
the Children's Global Assessment Scale (Bird, Canino, Rubio-Stipec, &
Ribera, 1987; Shaffer, Gould, Brasic, Ambrosini, Fisher, Bird, &
Ahwalia, 1983), on which a youngster receives a rating ranging from 0
to 100 with lower scores indicating greater impairment. Scores are
given in ten point intervals, and for each score there is a narrative
description of the meaning of the score.
The group considered several potential cut-off points on the CGAS,
and decided to use a score of 60 or lower as the cut-off point for the
less conservative definition of serious emotional disturbance. The
narrative description for 60 is:
``Variable functioning with sporadic difficulties or symptoms in
several but not all social areas. Disturbance would be apparent to
those who encounter the child in a dysfunctional setting or time but
not to those who see the child in settings where functioning is
appropriate.''
This decision was made partly on the basis of the work by Bird and
his colleagues that indicates that, ``Empirical work has demonstrated
that the optimal cut-off score on the CGAS that demonstrates definite
impairment is a score lower than 6l'' (Bird, Shaffer, Fisher, Gould,
Staghezza, Chen, & Hoven, l993, p. 103).
The score of 50 will be used as the more stringent cut-off point to
denote the more severe impairment. The narrative description for 50 is:
``Moderate degree of interference in functioning in most social areas
or severe impairment of functioning in one area, such as might result
from, for example, suicidal preoccupations and ruminations, school
refusal and other forms of anxiety, obsessive rituals, major conversion
symptoms, frequent anxiety attacks, frequent episodes of aggressive or
other anti-social behavior with some preservation of meaningful social
relationships''.
Data Sources
There are no national epidemiological studies of mental disorders
for children and/or adolescents that have been conducted in the United
States. This deficit makes it difficult to derive prevalence rates that
are generalizable to the entire United States. In the absence of
national studies, the group chose to examine the results from eight
smaller, and more localized studies including, Kashani, et.al (1987),
Costello, et. al (1988) (1994), Bird, et. al (1988), Kessler, et. al
(1994), Jensen, et. al (1995), MECA (Lahey, et. al, 1996, Shaffer, et.
al, 1996), and Costello, et. al (1995). (see Table 1 for a summary of
these studies).
The group of technical experts determined that it is not possible
to develop estimates of incidence using currently available data.
However, it is important to note that incidence is always a subset of
prevalence. In the future, incidence and prevalence data will be
collected.
Table One.--Summary of Studies
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SystemSample size and
Study Measure and DSM system age Measure of impairment
----------------------------------------------------------------------------------------------------------------
Kashani et al 1987................... DICA/DSMIII............ N=150, 14-16 yr. olds.. Rating of 3 or 4 by
Clinicians on 4 Point
Scale of Need for Tx
and Impairment.
Costello et al 1988.................. DISC 1.3 DSMIII........ Screened=789, CGAS 60 or less.
Interviewed=278, 7-11
yr. olds.
1994 (follow-up)..................... DISC 2.3 DSMIIIR....... Screened=789, CGAS 60 or less.
Interviewed=263, 12-18
yr. olds.
Bird et al 1988...................... DISC 1.3*/DSMIII....... n=777 first stage n=386 CGAS 60 or less.
second stage 4-16 yr.
olds
Kessler et al 1994................... CIDI/DSMIII-R (adult n=600 (about) 15-17 yr. Aggregation of 5
diagnoses). olds (Part of study of Measure.
15-54 yr. olds).
Jensen et al 1995.................... DISC2.1/DSMIIIR........ n=295 6-17 yr. old..... In tx or in
need of tx.
Internal
Impairment (1 or
more).
Internal
Impairment (2 Domains
or more).
MECA (Lahey et al, 1996 Shaffer et DISC2.1/DSMIII-R....... n=1265 9-17 yr. olds... CGAS 60 or
al, 1996). Less.
CGAS 50 or
less.
Internal
Impairment,
(3 or more),
(5 or more).
[[Page 52141]]
Costello et al 1995.................. CAPA/DSMIII-R.......... 2 stages n=4500 9, 11, Internal
and 13 yr. olds. Impairment,
(1 or more),
(2 or more),
(3 or more).
CGAS (60 or
less) CAFAS (20 or
higher).
----------------------------------------------------------------------------------------------------------------
Estimation Procedures
Based on the CMHS definition of serious emotional disturbance, and
the existing data bases which provide prevalence rates that can be
applied to this definition, it is estimated that the prevalence rate of
serious emotional disturbance in children 9-17 years of age is in the
range of 9-13 percent. Presently, the data are inadequate to estimate
prevalence rates for children under the age of nine. It is also
concluded that if a more stringent definition of impairment is desired
than was used for the estimated range of 9-13 percent, then the range
is from 5-9 percent. The difference between the two estimates is that
the measured level of functional impairment is greater in the second
estimate and has been characterized in Figure 1 as ``extreme functional
impairment.'' Children at both levels of impairment are considered to
have a ``serious emotional disturbance'' however; the group of children
falling into the range of 5-9 pecent constitutes a subset of the 9-13
percent.
It should be noted that the estimated prevalence range for 9-17
year olds is higher than the range recommended by Kessler et al. (1995)
for serious mental illness in adults (5.7 percent). The higher estimate
for 9-17 years olds is consistent with the fact that using the National
Comorbidity Study (NCS) data base, which served as the main data base
for the estimation of prevalence in adults, Kessler found that the 12
month prevalence for 15-17 year olds was 8.7 percent. The twelve month
prevalance for 18-54 year olds was 6.5 percent. To further understand
this difference, however, it is important to recognize that within the
18-54 year range there are differences associated with age. For
example, in Kessler's first article, it was reported that ``disorders
are consistently most prevalent in the youngest cohort (age range 15-24
years) and generally decline monotonically with age'' (Kessler et al.,
1994, p. 13). This was also the case with serious mental illness, as
reported by Kessler et al. (1995). This finding of highest prevalence
rates in youngest adults with rates decreasing with increasing age was
not only obtained in the NCS but also in the Epidemiological Catchment
Area study, completed in the early 1980s (Regier et al., 1988). Also,
the longitudinal research by Cohen et al. (1993), and the findings by
Reinherz et al. (1993) on 17-19 year olds point to especially high
prevalence rates for older adolescents.
Within the 9-17 year age range, the data are adequate to permit
determination of gender and socio-economic differences but are not
adequate to permit determination of race differences. The comparative
analyses by Costello & Messer (l995) are particularly useful for
looking at gender and socio-economic differences. Both for global and
specific measures of impairment, they find the prevalence rates of
serious emotional disturbance in the samples already mentioned to be
about twice as high in low socio-economic groups as in high socio-
economic groups. This finding is consistent for every one of the seven
data bases included in the analysis by Costello & Messer (l995). Jensen
et al. (l995) fail to find different prevalence rates by socio-economic
status in their study. However, as they point out the socio-economic
range in their sample was limited by the fact that all of the
youngsters were military dependents.
The following steps were taken to adjust for the difference in
state socio-economic circumstances. The 1995 estimates of children and
adolescents with serious emotional disturbance by state are provided in
Table 3.
Step 1
States were sorted by poverty rates (1995), in ascending order.
Using this sort order, States were initially classified into three
groups of equal proportions, i.e., the first 17 states were put into
Group A; the next 17 States into Group B; the remaining 17 States, into
Group C. However, in reviewing the results, we noted that observations
17 and 18 differed by .01 percent. Observation number 18 was included
in group A. For this reason, Group A has 18 cases, Group B has 16
cases, and Group C has 17 cases. Group A is the group that has a
relatively low percentage of children in poverty. Group B is the mid
point, and Group C is the group with the highest percentage of children
in poverty.
Step 2
At a level of functioning of 50 (LOF=50), the number of children
and adolescents with SED is calculated to be between 5-7 percent of the
number of youth 9-17 years for Group A. For Group B, the estimate is
between 6-8 percent of the number of youth 9-17 years. The estimated
SED population for Group C is calculated to be between 7-9 percent of
the number of youth 9-17 years.
Step 3
At a level of functioning of 60 (LOF=60), the number of children
and adolescents with SED is calculated to be between 9-11 percent of
the number of youth 9-17 years for Group A. For Group B, the estimate
is between 10-12 percent of the number of youth 9-17 years. The
estimated SED population for Group C is calculated to be between 11-13
percent of the number of youth 9-17 years.
[[Page 52142]]
Table 2.--1995 Estimates of Children and Adolescents With Serious Emotional Disturbance; State Estimates
Algorithms
----------------------------------------------------------------------------------------------------------------
Estimated population
---------------------------------------------------
LOF*=50 LOF*=60
States ---------------------------------------------------
Lower limit Upper limit Lower limit Upper limit
(percent) (percent) (percent) (percent)
----------------------------------------------------------------------------------------------------------------
Group A, Lowest percent in poverty.......................... 5 7 9 11
Group B, Medium percent in poverty.......................... 6 8 10 12
Group C, Highest percent in poverty......................... 7 9 11 13
----------------------------------------------------------------------------------------------------------------
*LOF=Level of functioning from the Children's Global Assessment Scale.
Table 3.--1995 Estimates of Children and Adolescents With Serious Emotional Disturbance by State
----------------------------------------------------------------------------------------------------------------
LOF*=50 LOF*=60
State Number of Percent in ---------------------------------------------------
youth 9-17 poverty Lower limit Upper limit Lower limit Upper limit
----------------------------------------------------------------------------------------------------------------
Total...................... 33,706,204 ........... 2,118,269 2,792,391 3,466,516 4,140,636
1 New Hampshire.............. 147,695 4.07 7,385 10,339 13,293 16,246
--------------------------------------------------------------------------------
2 Alaska..................... 90,955 8.96 4,548 6,367 8,186 10,005
3 New Jersey................. 932,671 9.60 46,634 65,287 83,940 10,259
4 Utah....................... 349,086 9.76 17,454 24,436 31,418 3,839
5 Minnesota.................. 643,892 11.30 32,195 45,072 57,950 70,828
6 Colorado................... 491,930 11.34 24,597 34,435 44,274 54,112
7 Nebraska................... 231,037 11.62 11,552 16,173 20,793 25,414
8 Missouri................... 709,439 11.74 35,472 49,661 63,850 78,038
9 Kansas..................... 354,722 12.55 17,736 24,831 31,925 39,019
10 Wisconsin.................. 706,004 12.56 35,300 49,420 63,540 77,660
11 Hawaii..................... 143,901 13.97 7,195 10,073 12,951 15,829
12 North Dakota............... 91,443 14.13 4,572 6,401 8,230 10,059
13 Virginia................... 790,359 14.38 39,518 55,325 71,132 86,939
14 Nevada..................... 186,695 14.41 9,335 13,069 16,803 20,536
15 Indiana.................... 758,633 15.24 37,932 53,104 68,277 83,450
16 Rhode Island............... 115,176 15.36 5,759 8,062 10,366 12,669
17 Delaware................... 85,396 15.56 4,270 5,978 7,686 9,394
18 Maine...................... 160,434 15.57 8,022 11,230 14,439 17,648
19 Vermont.................... 76,500 15.79 4,590 6,120 7,650 9,180
20 Maryland................... 608,209 15.80 36,493 48,657 60,821 72,985
21 Wyoming.................... 75,106 16.21 4,506 6,008 7,511 9,013
22 Georgia.................... 942,161 16.30 56,530 75,373 94,216 113,059
23 Massachusetts.............. 680,101 17.12 40,806 54,408 68,010 81,612
24 Iowa....................... 385,583 17.39 23,135 30,847 38,558 46,270
25 Washington................. 714,567 17.81 42,874 57,165 71,457 85,748
26 Connecticut................ 378,473 18.03 22,708 30,278 37,847 45,417
27 Pennsylvania............... 1,462,731 18.07 87,764 117,018 146,273 175,528
28 Oregon..................... 411,543 18.22 24,693 32,923 41,154 49,385
29 Michigan................... 1,275,452 18.36 76,527 102,036 127,545 153,054
30 Ohio....................... 1,451,220 19.33 87,073 116,098 145,122 174,146
31 Idaho...................... 183,829 20.57 11,030 14,706 18,383 22,059
32 South Dakota............... 108,855 20.74 6,531 8,708 10,886 13,063
33 North Carolina............. 879,091 21.06 52,745 70,327 87,909 105,491
34 Kentucky................... 504,373 21.25 30,262 40,350 50,437 60,525
35 Illinois................... 1,517,182 22.14 106,203 136,546 166,890 197,234
36 Tennessee.................. 658,573 22.23 46,100 59,272 72,443 85,614
37 Montana.................... 126,834 22.39 8,878 11,415 13,952 16,488
38 Arkansas................... 337,718 22.44 23,640 30,395 37,149 43,903
39 Texas...................... 2,623,654 24.53 183,656 236,129 288,602 341,075
40 California................. 3,968,950 24.97 277,827 357,206 436,585 515,964
41 Oklahoma................... 457,496 24.98 32,025 41,175 50,325 59,474
42 Arizona.................... 542,019 25.31 37,941 48,782 59,622 70,462
43 Florida.................... 1,623,697 25.50 113,659 146,133 178,607 211,081
44 New York................... 2,141,435 25.51 149,900 192,729 235,558 278,387
45 West Virginia.............. 231,390 26.93 16,197 20,825 25,453 30,081
46 Alabama.................... 547,671 27.50 38,337 49,290 60,244 71,197
47 Louisiana.................. 639,158 29.69 44,741 57,524 70,307 83,091
48 South Carolina............. 470,875 32.11 32,961 42,379 51,796 61,214
49 Washington, DC............. 48,365 35.33 3,386 4,353 5,320 6,287
50 New Mexico................. 251,231 36.59 17,586 22,611 27,635 32,660
51 Mississippi................ 392,694 37.03 27,489 35,342 43,196 51,050
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[[Page 52143]]
Analyses show very similar prevalence rates for girls and boys in
the seven sites. The absence of gender differences is also apparent in
the findings of Jensen et al. (1995). Kessler (1995), however, reports
a higher prevalence rate in females than males using the adult
diagnostic categories, and an older adolescent sample (15-17 year
olds). There is no indication that overall prevalence rate of serious
emotional disturbance differs by gender within the 9-17 year age range
although there clearly are gender differences in prevalence of
particular diagnoses, such as conduct disorder and depression, and
there are suggestions that the rates may diverge in later years of
adolescence.
Overall, there is support for the use of socio-economic status as a
correction factor in developing a methodology for the estimation of the
prevalence of serious emotional disturbance. There is no empercial
basis at this point for using other correction factors.
Conclusions
Of the 33 million children and adolescents between the ages of 9-17
in the United States, 9-13 percent or 3.5-4 million of these youngsters
have a serious emotional disturbance at a score of 60 or lower on the
Children's Global Assessment Scale. A more stringent definition of
impairment, representing a score of 50 or lower on the Children's
Global Assessment Scale shows a range of 5-9 percent or 2.1-2.8 million
youngsters with a serious emotional disturbance (see Figure 1).
Currently there are not sufficient studies to determine the prevalence
rate in very young children ages birth--8. Therefore the estimated
number of children with serious emotional disturbance presented here is
a low estmate since it only included data for 9-17 year olds.
Limitations
There are several limitations for these estimates. First, it must
be recognized that these estimated ranges are based on the findings
from many modest-sized studies which varied not only in population but
often in instruments that were used (particularly for measurement of
impairment), methods that were used to collect the data, and even the
diagnostic system that was used.
Second, there are only two studies that include youngsters under
the age of nine, and these studies are not adequate to provide a base
for any estimate of the prevalence of serious emotional disturbance for
children under the age of nine. The estimate presented here is intended
for children between nine and 17 years of age.
Third, the data are also inadequate to determine prevalence
estimates for children of different racial and ethnic backgrounds.
Several of the studies included youngsters of color in their sample and
two studies were done exclusively on Hispanic youngsters in Puerto Rico
(Bird et al., 1988, & one of the MECA sites). However, the sample sizes
are too small and not sufficiently representative of African-American,
Hispanic, Asian American, or native American populations to permit
estimates to be made.
Fourth, with the absence of any large national studies, it is not
possible to determine whether rates differ in urban versus rural areas,
or different regions of the country.
Scope of Application
Inclusion in or exclusion from the definition is not intended to
confer or deny eligibility for any service or benefit at the Federal,
State, or local levels. Only a portion of children with a serious
emotional disturbance seek treatment in any given year. Due to the
episodic nature of serious emotional disturbance, some children and
adolescents may not require mental health service at any particular
time. Additionally, the definition is not intended to restrict the
flexibility or responsibility of the State or local government to
tailor publicly funded service systems to meet local needs and
priorities. However, all individuals whose services are funded through
Federal Community Mental Health Services Block Grant funds must fall
within the criteria set forth in these definitions. Any ancillary use
of these definitions for purposes other than those identified in the
legislation is outside the purview and control of CMHS.
It is anticipated that additional work will be done in future years
to refine and update the estimation methodology. CMHS will keep States
apprised as this work develops.
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[GRAPHIC] [TIFF OMITTED] TN06OC97.002
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Dated: September 22, 1997.
Richard Kopanda,
Executive Officer SAMHSA.
[FR Doc. 97-26372 Filed 10-3-97; 8:45 am]
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