[Federal Register Volume 63, Number 137 (Friday, July 17, 1998)]
[Notices]
[Pages 38661-38665]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 98-19039]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Substance Abuse and Mental Health Services Administration
Children With Serious Emotional Disturbance; Estimation
Methodology
AGENCY: Center for Mental Health Services, Substance Abuse and Mental
Health Services Administration, HHS.
ACTION: Final notice.
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SUMMARY: This notice describes the final methodology to identify and
estimate the number of children with a serious emotional disturbance
(SED) within each State. This notice is being published as part of the
requirements of Public Law 102-321, the ADAMHA Reorganization Act of
1992.
EFFECTIVE DATE: October 1, 1998.
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 and treatment of mental illness, and
the promotion of mental health. Title II of Public Law 102-321
establishes a Block Grant for Community Mental Health Services,
administered by CMHS, that permits the allocation of funds to States
for the provision of community mental health services for children with
a SED and adults with a serious mental illness (SMI). Public Law 102-
321 stipulates that States estimate the incidence (number of new cases)
and prevalence (total number of cases in a year) of individuals with
either SED or SMI in their applications for block grant funds.
[[Page 38662]]
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 Notice, 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 SED. A similar group
prepared an estimation methodology for adults with a SMI (March 28,
1997, Federal Register Notice, Volume 62, No. 60 p.14928).
Summary of Comments
This document reflects a thorough review and analysis of comments
received in response to an earlier notice published in the Federal
Register, on October 6, 1997. Ten letters expressing either support or
concern regarding the proposed methodology were received by the close
of the public comment period. Those expressing support praised the
effort of the CMHS team of technical experts to develop reliable State
estimates for the number of children with SED. Comments expressing
concern generally noted limitations similar to those identified by the
team of technical experts in the original October 6, 1997, Federal
Register notice. These limitations included the exclusion of children
from birth to age 8 and the exclusion of variables such as ethnicity
and geographical location. Additionally, concerns were raised about
whether the proposed methodology represented prevalence rates more
precisely than State surveys or local data collection efforts.
Before addressing the comments, CMHS extends appreciation to
representatives from Atlantic County, New Jersey, and the University of
Texas Medical Branch at Galveston for directing attention to errors
made in Table 3--1995 Estimates of Children and Adolescents with SED by
State. The New Jersey upper limit for less-impaired children should
read 102,594, and the Utah upper limit estimate should read 38,399.
These corrections to Table 3 have been made and will be reflected in
all subsequent publications.
Purpose of the Methodology
Although several comments indicated satisfaction with the
estimation methodology, several others requested that CMHS clarify
appropriate use of the methodology. In response, CMHS emphasizes that
the methodology for children and adolescents with SED was developed
specifically for States to use in the areas of planning and program
development. Since it is obvious that resources for this population of
children are inadequate in relation to need, States should continue to
set priorities to assure the most cost-effective use of all available
resources. Inclusion or exclusion of any individual based on this
methodology is not intended to either confer or deny eligibility for
any other service or benefit at the Federal, State, or local level.
Estimation Methods
Some comments suggested that surveys and other State-specific or
local data would provide more precise estimations than the proposed
methodology. CMHS understands this concern. However, a group of
technical experts established by CMHS determined that the most valid
method to estimate the prevalence of SED was to examine findings from
extant community epidemiological studies that used a structured
diagnostic interview connected to the DSM-III or DMS-III-R system. The
group of technical experts thoroughly searched for studies that met
this criteria and incorporated findings from all of the studies in its
report. CMHS recognizes the value of local or statewide surveys but
continues to support the view that the most valid estimates can be
derived from community epidemiological studies that have used a
structured diagnostic interview. CMHS will support the use of State
data if they are based on community epidemiological studies that
include a standardized diagnostic interview that is linked with the DSM
system and that also includes a measurement of functional impairment.
Concerns were also raised that the singular use of poverty as an
adjustment to prevalence rates was based on convenience. This is not
the case and the October 6, 1997, Federal Register Notice summarizes
the fastidious efforts taken to examine other potential variables. For
each of the other variables considered, either insufficient evidence
existed to determine if an adjustment should be made (e.g., for
variables such as race and ethnic background, and population density)
or the available evidence suggested that adjustment should not be made
(i.e., gender). The findings from these efforts indicated that the
prevalence of SED is greater in children from low socio-economic
backgrounds than in children from middle-class or upper-class
backgrounds. As a result, the decision was made to include percent-in-
poverty as an adjustment factor. While the data were clear about an
overall relationship, in the absence of any national studies, the
quantitative adjustment that should be made could not be determined
with precision. It therefore was decided that since the report could
offer only general estimates of prevalence, given the shortcomings of
the available data, the simplest and perhaps clearest way to adjust for
percent-in-poverty would be to divide the States into groups based on
the percent-in-poverty. Although this ``grouping'' method may
potentially exaggerate the differences between States that fall in
different categories, the percent-in-poverty measures differ in a
relatively minor way. Because the estimates are not to be used to
determine funding levels, the decision was made to use this grouping
method despite minor problems. It is hoped that additional research
will permit more precise estimations in the future.
With regard to estimation methods, concerns were also raised that
the selection of poverty as the only variable to ``correct'' the
estimated prevalence of SED would produce data that underestimated the
State prevalence rates of SED. Several States emphasized that
additional factors, including geographical data (urban/rural), would
provide more representative data. CMHS recognizes the importance of
this data. However, presently, the data in this area is not precise
enough to draw estimates; in the absence of a national study, CMHS
chose to utilize and analyze the most precise data available. In this
instance, percent-in-poverty rates proved to be the most precise data
available. As new data become available, these issues will be
revisited.
One comment raised specific questions about the comparability of
the prevalence estimates for children with SED with estimates from
other studies. For example, Knitzer, in ``At the Schoolhouse Door,''
estimates that 3 to 5 percent of children are ``judged to be seriously
emotionally disturbed'' (p. xii). However, this book was published in
1990, before CMHS developed the definition of SED on which the present
estimate is based and before the results of most of the studies
included in the present report were available. Similarly, the 1969
Joint Commission on the Mental Health of Children indicates that 2 to 3
percent suffered from severe disorders. The present report is based not
only on more recent data but also on new instruments and a revised
diagnostic system.
Finally, concerns were raised that prevalence estimates for
children/adolescent with SED in individual States are not uniformly
consistent with estimates for adults with SMI published by CMHS. In
comparing data for children and adults, it should be
[[Page 38663]]
remembered that the data for children cover a restricted period of nine
years (from ages nine through 17) while the adult estimates are for the
adult lifetime, beginning at age 18 and over. Therefore, it is not
surprising that within the same State estimates for children may be
lower or higher than adults. Further, the group of technical experts
that developed estimates for SMI found substantially higher prevalence
rates in young adults than in older adults. Consequently, States with a
high percentage of elderly will have lower overall prevalence rates of
SMI than will States with a high percentage of young adults. When
comparing adult prevalence rates with those for children, it is
important to remember that the children's data are based on a
relatively short developmental stage in relation to the adult rates.
Exclusion of Children Age Birth to 8
Several comments acknowledged the paucity of research on children
from birth to 8 years and inquired about future research efforts by
CMHS to address this population. CMHS acknowledges the need to develop
estimation methodology for this very important population of young
children. Current plans for developing this methodology include an
updated literature review of prevalence data for children with a SED in
the birth to 8 age group. CMHS will make these data available when
obtained.
Exclusion of Puerto Rico
It was brought to the attention of CMHS that there was significant
interest in obtaining prevalence estimates for children with SED in
Puerto Rico. Estimates of children with SED, published on Monday,
October 6, 1997, in Federal Register, Notice Volume 62, No 193, p.
52139, were based on 1995 U.S. Census Bureau population and poverty
rate data. These Census Bureau estimates are not available for Puerto
Rico and other U.S. territories. CMHS responds to these comments by
obtaining SED estimates for Puerto Rico derived from 1990 census data
(the most recent year for which data are available).
According to the Census Bureau, the poverty rate for Puerto Rico in
1990 was 66.8 percent for persons under 18 years. Using the steps
outlined on page 52141 of the above Federal Register Notice, Puerto
Rico with a poverty rate of 66.8 percent will be included in group C
(the group with poverty rates in excess of 22 percent). At a level of
functioning of 50 (LOF=50), the number of children and adolescents with
SED is estimated to be between 7-9 percent of youth 9-17 years of age.
At a level of functioning of 60 (LOF=60), the number of children and
adolescents with SED is estimated to be between 11-13 percent of youth
9-17 years of age.
Table 1.--Estimates of Children and Adolescents With Serious Emotional Disturbance; State Estimates Algorithms
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LOF*=50 LOF*=60
Territory Number of Percent in -------------------------------------------------------
youth 9-17 poverty Lower limit Upper limit Lower limit Upper limit
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Puerto Rico................. 602,309 66.8 42,162 54,208 66,254 78,300
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* LOF=Level of functioning from Children's Global Assessment Scale.
Exclusion of Substance Use Disorders
The decision to exclude substance use disorders from this
estimation methodology was addressed in the 1993 Federal Register
Notice that provided a national definition of SED. Because substance
use disorders are not included in the definition of serious emotional
disorder, they are not included in the current estimation methodology.
Please see the Federal Register Notice (1993, 58(96), p. 29424) for a
more detailed explanation.
Instrumentation
CMHS stresses that the methodology is based on the Children's
Global Assessment Scale (CGAS) because the CGAS was the most commonly
used instrument found in the community-based epidemiology literature
received by the group of technical experts. When other instruments were
used, the findings were taken into consideration. CMHS recognizes that
a number of States use the Children's Adolescent Functional Assessment
Scale-Mini-Scale and, consequently, does not discourage the use of this
instrument.
Definition of Serious Emotional Disturbance
Some States expressed concern that the definition of SED used to
estimate prevalence may result in an over-estimate of prevalence by
counting children who had a diagnosis and functional impairment over a
2-year period rather than a 1-year period.
The definition used to estimate prevalence is ``total number of
cases in a year.'' None of the studies cited in the report gathered
prevalence information of a duration of greater than a year. In fact,
most of the studies used to formulate the prevalence estimates utilized
the Diagnostic Interview Schedule for Children, which derives
prevalence information for a 6-month time period. Therefore, not only
does the definition ensure against an over estimate of prevalence but
also there is a possibility of a slight under estimate, based on the
methods used.
Estimation Procedures
The following steps were taken to adjust for differences in State
socio-economic circumstances. The 1995 State-by-State estimates of
children and adolescents with SED 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 lowest
percentage of children in poverty; Group B represents a mid-point; and
Group C includes 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 between 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
[[Page 38664]]
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.
Table 2.--1995 Estimates of Children and Adolescents With Serious Emotional Disturbance; State Estimates
Algorithms
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Estimated population
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States LOF*=50 LOF*=60
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Lower limit Upper limit Lower limit Upper limit
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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%
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* LOF=Level of functioning from the Children's Global Assessment Scale.
Table 3.--1995 Estimates of Children & Adolescents With Serious Emotional Disturbance by State
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LOF*=50 LOF*=60
State Number of Percent in ---------------------------------------------------
youth 9-17 poverty Lower limit Upper limit Lower limit Upper limit
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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 83,940 102,594
4 Utah.......................... 349,086 9.76 17,454 24,436 31,418 38,399
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
[[Page 38665]]
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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Dated: June 29, 1998.
Joseph Faha,
Director, Legislation & External Affairs.
[FR Doc. 98-19039 Filed 7-16-98; 8:45 am]
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