Documente Academic
Documente Profesional
Documente Cultură
4, 1997
Objectives: This paper (a) creates and validates measures for population survey data to assess
functional limitation in mobility, self-care, communication, and learning ability for school-age
American children; (b) calculates rates of functional limitation using these measures, and
provides population estimates of the number of children with limitations; and (c) examines
these limitations as a function of socioeconomic factors. Method: The study is based on data
for children aged 5-17 collected in the 1994 National Health Interview Survey on Disability.
Ordinal values are assigned to survey items in the four functional areas and analyzed to
produce scales of high reliability. These measures are used to identify within a 95% confidence interval the number of children with these limitations. Ordered logistic regression
models measure the effects of functional limitations on disability and societal limitation. Socioeconomic differences are measured with an ordered logistic regression model that predicts
severity and comorbidity. Results: Limitations in learning ability (10.6%) and communication
(5.5%) arc the most common, with mobility (1.3%) and self-care (0.9%) occurring less often.
Six percent of children have one serious functional limitation and 2.0% have two or more
serious functional limitations. This corresponds to 4.0 million school-age American children
with serious functional limitations. Functional limitation is strongly linked to socioeconomic
disadvantage and to residence in single-mother households. Conclusions: Future population
research should use multiple-item scales for four distinct areas of functional limitation, and
a summary that takes into, account both severity and comorbidity. The improved estimates
of the number of school-age children with functional limitation in this paper may help contribute to a more informed scientific and policy discussion of functional limitation and disability among American school-age children. Future research on the disability process among
children must consider the role of socioeconomic disadvantage and family structure.
KEY WORDS: Disability; children; functional limitation; population estimates; socioeconomic disadvantage.
INTRODUCTION
1 Population
203
1092-7875/97/1200-0203$12.50/0 1997 Plenum Publishing Corporation
204
Population-based estimates of the prevalence of
functional limitation are needed to calculate the number of children who have functional limitations that
may create needs for special medical, rehabilitation,
or educational services. Many estimates of the prevalence of child disability are based on (a) medical evidence about the occurrence of potentially disabling
conditions, and (b) records of the medical and social
costs of caring for children with functional limitations.
The first type of estimate is flawed because some children have medical conditions that are not diagnosed;
other children with medical conditions do not develop
functional limitations or disabilities. The second strategy is biased because only those children who actually
receive rehabilitation interventions, whether or not
they have functional limitations, are counted. This approach also ignores the fact that some supports for
families with children with complex chronic health impairments or marked and extreme functional limitations are available only to families who are poor (for
example, SSI). Both strategies for counting disabled
children are also subject to the risk of double-counting children with multiple medical conditions and/or
rehabilitation inputs.
Given these needs for information about functional limitation, disability, and societal limitation
among children, the United States has launched a variety of population studies to improve information
and knowledge about these issues. The two major
population surveys that include nationally representative samples of sufficient size for persons of all
ages, including children, are the Survey of Income
and Program Participation (SIPP), conducted by the
U.S. Bureau of the Census, and the National Health
Interview Survey-Disability Supplement (NHIS-D),
conducted by the National Center for Health Statistics (NCHS) in the Centers for Disease Control and
Prevention. The Winter 1994 and 1995 waves of the
1992 and 1993 SIPP panels (1) and the 1994-95
NHIS-D collected data for the measurement of child
disability. SIPP has many fewer questions related to
children than NHIS-D. Survey procedures for measuring disability among young children are difficult to
design because of the very strong age relatedness of
activities at this age and the rapid pace of development. To handle this, NHIS-D developed separate
questions for children under age 4, and collected
common information on functional limitation and
disability for children 5 to 17 years of age. These design differences make the NHIS-D preferable for this
analysis of child disability.
Hogan et al.
METHOD
Data
205
Measures of Disability
Research on the survival and development of severely disabled children has shown that key measures
of functional capacity of children include the dimensions of self-care, mobility, communication, and
learning ability (14-16). A functional independence
measure (WeeFIM) for children from birth through
adolescence has found these dimensions of functioning (in elaborated form) are useful to describe caretaker and special resource needs, and in tracing
outcomes over time across health, developmental,
educational, and community settings (17-19). Accordingly, in this research we subdivide functional
limitation into four conceptually distinct categories
mobility, self-care, communication, and learning ability.
Disability is measured with reference to the ability to perform school and play activities, with and
without assistance or aid. This measure indicates
whether the children can attend school and, if they
can attend, if they are limited either in school or
other areas. Societal limitation is measured by parental perceptions of whether the child is disabled
and whether others outside of the home consider the
child disabled.
Measures of Socioeconomic Status Risk
Socioeconomic risk factors include race/ethnicity, family structure, education of the NHIS-D respondent for the child (typically the parent, usually
the mother), and three measures of the family economic situation and isolation (poverty, the lack of
telephone in household, and residence in mobile
home). Data are reasonably complete on these independent variables, with missing data amounting to
0.3% for race and ethnicity, 0.5% for family type, and
0.4% for parent's education. Using information on
family income (and a yes/no question asking nonrespondents if family income was less than $20,000 per
year), poverty status was calculated for 93.6% of
cases. A total of 2,152 cases (out of a total of 21,415)
were missing at least one of these items on Socioeconomic conditions. In this paper, we analyzed all cases
(including those with missing data), providing separate variables (not shown) in the model to indicate
each type of missing data. These procedures provide
unbiased estimates of all coefficients for the entire
population of children.
Hogan et al.
206
Analysis Procedures
This analysis consists of three steps: (1) create
and validate scales of functional limitation, (2) assess
the number of children with functional limitations using these scales, and their point-prevalence rates, and
(3) examine the prevalence of functional limitation
by family socioeconomic risk factors. Each is discussed in turn.
Scale Construction and Validation
The initial step was to identify and include all
questions in the NHIS-D that identified and/or characterized the severity of chronic (lasting 12 months
or longer) or permanent conditions or functional
limitations for children 5 to 17 years of age. Each of
these questionnaire items was then assigned to one
of four functional areas: mobility, self-care, communication and sensory (hereafter, "communication"),
and social cognition and learning ability (hereafter,
"learning ability"). These coding decisions were independently reviewed and agreed upon by each of
the four authors of this paper; in nearly all cases the
classification decision was straightforward. (See Appendix.)
The NHIS-D questionnaire was organized to determine the presence or absence of a condition or
limitation, followed with questions about its severity
(for example: some, a lot, completely unable). We
used this information to build ordinal rank items for
each type of limitation measured within a functional
area. Typically, 0 indicated no limitation, 1 indicated
some limitation, 2 indicated a more severe limitation,
and so forth. The various items for each type of limitation within each functional area were then summed
to provide an overall measure of impairment on each
dimension of functioning. The theoretical range for
each area of functional limitation is a function of the
number of types of limitation and the degree of severity measured in the NHIS-D. The ordinal scales
produced by these procedures for each functional
area have a theoretical range from 0 to a high value
of 18 (mobility), 33 (self-care), 8 (communication),
and 9 (learning ability). (See Appendix.)
It was appropriate to calculate an ordinal categorical measure for the severity of each kind of limitation since the questions themselves are ordinal and
provide no basis for stronger measurement assumptions. The decision to treat each type of limitation
within a functional area as equivalent was necessi-
RESULTS
Scale Construction and Validation
Four scales of functional limitation were successfully created. The scales have an alpha reliability coefficient of 0.87 for mobility, 0.95 for self-care, 0.74
for communication, and 0.86 for learning ability. In
usual practice, a scale with a Cronbach coefficient
alpha of better than 0.70 is considered excellent. In
no case did an item have a higher correlation with
a scale other than the one in which it was placed.
These detailed ordinal scales for each type of functional limitation are highly skewed, with few cases at
the highest levels. The detailed scales were therefore
divided into ordinal measures of the level of severity.
The results are provided in Table I.
Given that comorbidity is clinically common
among children on these four dimensions of functional performance, associations among them are expected. But since they measure conceptually distinct
functions with distinct medical consequences, these
scales should not be identical. These expectations are
demonstrated in Table II, which provides the Spearman rank order correlations of the severity of limitation among the four functional areas. The highest
scale correlations are 0.545 for learning ability and
communication and 0.444 for mobility and self-care.
Other correlations are modest and positive, ranging
from 0.238 to 0.303. This demonstrates that the four
measures of functional limitation provide empirically,
as well as conceptually, distinct measures of functional
limitation.
Greater severity of limitation in each functional
area is associated with higher levels of disability and
societal limitation. Mobility and self-care limitations
are modestly associated with disability, whereas limitations in communication and learning ability are
207
more disabling. The measure of societal limitation
(the extent to which the child is viewed as disabled)
is strong and shows little variation across functional
areas (0.376-0.451). One of the major innovations in
the NCMRR disability classification was to add a distinct measure of societal limitation. This analysis provides empirical confirmation for this decisionamong
children, disability has a rank order correlation of
0.486 with societal limitation.
The ordinal scale for each type of functional
limitation has a significant relationship to disability
and societal limitation. Table III provides the results
of ordered logistic regression models that include
each of the measures of limitation in the four functional areas as independent variables predicting disability and societal limitation. The key finding is that
each dimension of functional limitation contributes
uniquely to disability and to societal limitation. Children with a mobility limitation are 2.5 times more
likely than children without a mobility limitation to
be at each level of disability, and they are 5.3 times
more likely to experience each level of societal limitation. Limitations in self-care and learning ability
are associated with similarly high risks of disability,
and with levels of societal limitation three to four
times higher. Limitation in communication increases
the risk of disability and societal limitation by about
60%, a result that is substantially smaller than the
consequences for other types of limitation.
Population Prevalence Estimates
This paper has created measures that are appropriate for use with population survey data to measure
functional limitation in mobility, self-care, communication, and learning ability for school-age American
children. Using these measures, this paper now produces population estimates of the number and pointprevalence rates of functional limitation in school-aged
children (Table I). Most American children are not
limited in mobility (98.7%), self-care (99.1%), communication (94.5%), or learning ability (89.4%). Overall,
fully 87.7% of children are without any type of limitation.
These figures on the functional health of
American children should not disguise the large
number of children who are characterized by each
of the functional limitations. Of all school-age children, 650,000 (1.3%) are limited in mobility, 470,000
(0.9%) have a self-care limitation, 2,743,000 (5.5%)
have a communication limitation, and 5,237,000
(10.6%) have a limitation in learning ability. Overall,
208
Hogan et al.
Table I. Distribution of Children Aged 5-17 on Functional Limitations and Disability Outcomesa
Severity
Mobility imitation
None
Mild
Moderate/severe
Self-care limitation
None
Mild
Moderate/severe
Communication limitation
None
Mild
Moderate
Severe
Learning ability limitation
None
Mild
Moderate
Severe
Severity of functional limitations
No limitation
One or more mild
One serious, plus any mild
Two serious, plus any mild
Disability
No limitation
Limited, not in school
Limited, in school
Requires special services in school
Cannot attend school
Societal limitation
No one
Parent or public
Parent and public
a
NHIS-D
sample
frequency
Percent of
population
Number in
population
(1000s)
95%
Confidence
interval
(1000s)
21,134
98.7
48,894
923
233
48
1.1
0.2
543
107
42
15
21,205
99.1
49,074
97
113
0.4
0.5
216
254
925
213
20,220
94.5
616
324
255
2.8
1.5
1.2
46,800
1404
19,135
89.4
745
850
685
3.4
4.0
3.2
18,778
87.7
901
419
4.2
6.1
2.0
19,465
91.0
438
316
65
2.1
5.2
1.4
0.3
20,675
280
460
1317
1131
755
582
27
875
81
47
42
44,306
1699
1974
1564
850
43,470
2074
3028
839
973
57
45,081
1026
2577
849
657
100
710
151
42
21
96.6
47,835
904
1.3
2.2
638
48
64
1071
77
85
74
86
118
209
Table II. Spearman Rank Order Correlations of Dimensions of Functional Limitation and Disability:
Children Aged 5-17a
Mobility
Mobility
Self-care
Communication
Learning ability
Disability
Societal limitation
Self-care
Communication
Learning
ability
Disability
.441
.451
.486
_
.444
.280
.238
.258
.376
.303
.243
.295
.410
.545
.384
.438
"Table entries are the weighted Spearman rank order correlations. All correlations are significant at p < .05.
Source: 1994 National Health Interview Survey-Disability Supplement.
Table III. Ordered Logistic Regression Models of Four Dimensions of Functional Limitation as Predictors of Disability and
Societal Limitation: Children Aged 5-17
Disability
Societal limitation
Parameter
estimate
Odds
ratio
-2.944 (.35)
-3.335 (.35)
-5.356 (.41
-7.644 (.67)
Parameter
estimate
Odds
ratio
-4.818 (.74)
-5.624 (.76)
0.913 (.33)
0.802 (.33)
0.482 (+.12)
1.038 (.08)
13700,4 (p = .0001)
2.491
2.230
1.619
2.825
1.660 (+.53)
1.221 (.47)
0.483 (.14)
1.363 (.10)
4346,4 (p = .0001)
5.259
3.390
1.621
3.910
Table entries are weighted parameter estimates with 95% confidence intervals noted in parentheses, and odds ratios. All estimates
are significant at p < .001. Source: 1994 National Health Interview Survey-Disability Supplement.
210
Hogan et al.
Table IV. Ordered Logistic Regression Models of Net Sociodemographic Differentials in
Severity of Functional Limitation: Children Aged 5-17a
Sociodemographic characteristic
Severity of limitation
None (omitted category)
Mild (Intercept 3)
One serious (Intercept 2)
Two or more serious (Intercept 1)
Parameter estimate
-2.245 (.09)
-2.716 (.09)
-4.204 (.12)
Race/ethnicity
Non-Black, Non-Hispanic (omitted category)
Black
Non-Black, Hispanic
-0.144 (.16)
-0.314 (.20)c
Family structure
Two parents (omitted category)
One parent with other adult
One parent
No parent
0.208 (.25)
0.482 (.14)a
0.716 (.31) d
Parent education
College (omitted category)
High school graduate
Less than high school
0.230 (.10) b
0.196 (.18)d
0.333 (.12)d
Odds ratio
1.000
0.866
0.731
1.000
1.231
1.619
2.046
1.000
1.258
1.217
1.000
1.396
0.300 (.18)c
1.000
1.350
0.219 (.20)b
1.000
1.244
20887,16 (p = .0001)
Table entries are weighted parameter estimates with 95% confidence intervals (noted in
parentheses) and odds-ratios. This model was fitted with indicators for missing data (not shown).
None of these indicators is statistically significant (p < .05). Source: 1994 National Health
Interview Survey-Disability Supplement.
b
p < .05.
c
p < .01.
d
p < .001.
ample, grandmother or male partner) are not significantly more likely than children in two-parent
households to be functionally limited. Children who
reside in a mobile home are 35% more likely to be
functionally limited than those living in apartments
or houses. Children living in households without a
telephone are 24% more likely (controlling for poverty and housing type) to be functionally limited.
Blacks and Hispanics have a higher prevalence of
functional limitation than whites. Controlling for socioeconomic differences and family structure, black
children are no more at risk of functional limitation
than whites.
211
areas of functioning. Indeed, across the four areas of
functioning, 287,000 children have serious limitations
in two areas plus mild limitations in one or two others.
These population estimates of functional limitation among school-age children compare favorably to
estimates prepared by other researchers using different data and methods. Based on data from the 199495 SIPP for children 6 to 14 years of age, McNeil
(1) estimates that the proportion of children with
some type of disability was 12.7%. This is very close
to the estimate of 12.3% of children 5 to 17 years
old with a disability reached in this paper. Looking
at disability, McNeil reports that proportion of children with difficulty doing regular homework is 6.3%,
with 4.6% of children having a learning disability.
This paper finds that 6.9% of children are limited in
school; 1.7% require special services or are unable
to attend school. Analyzing data for children under
age 18 from the 1992-94 NHIS, Newacheck and Halfon (4) report that 6.5% of children were limited in
their activities. Sixty-one percent of these limitations
in activities were accounted for by chronic diseases
and injuries, with chronic impairments being the
main cause of the rest.
The approach developed in this paper avoids
many of the conceptual and methodological problems of earlier studies, and provides a more solid basis for the study of the entire disability process. The
use of multiple survey items, classified into medically
appropriate groupings, to create reliable and valid
measures of functional limitation is the key innovation of this paper. The further development of a
measure of comorbidity and seriousness of functional
limitation is another.
Important to the approach of this paper is the
distinction it maintains between functional limitations, disability, and societal limitation. By making
this distinction it is possible to investigate how functional limitations among children lead to disability
and societal limitation. The measurement of functional limitation provides a sound policy basis on
which to develop rehabilitation inputs. The settings
in which disability occurs varies over the life course
as the developmentally and socially appropriate activities of children are succeeded by adult roles. The
analysis of functional limitations allows policymakers
to determine the extent to which rehabilitation inputs
(including specialized school assistance) are called
for, while also providing data that may be used to
prepare for specialized housing, job training or pro-
212
grams, and income supplements may be required as
these young people become adults.
The ameliorative effect of a second adult living
in the household, even when that adult is not the
father, suggests policy attention must be directed to
unmeasured parental and socioeconomic resource
constraints faced by single-parent households. It may
be that such disadvantaged families are not able to
prevent medical conditions from developing into serious functional limitations, or that their socioeconomic disadvantage hinders access in obtaining
rehabilitation for their functionally limited children.
This paper provides evidence of cumulative disadvantage in family conditions on the disability process
among children. Children from high-risk families are
2.75 times as likely to have a serious limitation in
functioning as children from low-risk families. This
contrast illustrates that socioeconomic disadvantage
is an important factor in the disability process for
children. Higher levels of disadvantage are associated
with increased likelihood of serious functional limitation.
Children in families with low socioeconomic resources may not have potentially disabling conditions
identified in an adequate and timely fashion. In such
cases, the necessary medical inputs to prevent functional limitation will not be brought successfully to
bear. In other cases the condition may be diagnosed,
but the medical and family inputs that can be mobilized by disadvantaged families may be inadequate.
Finally, the much greater prevalence of socioeconomically disadvantaged families among children
with functional limitations will challenge the resources of health care, social services, and education
providers. And it may well lead to large numbers of
American children entering adulthood with functional impairments and disabilities that will severely
limit their chances of becoming self-supporting
adults.
By design, the NHIS-D is a cross-sectional survey. This makes it difficult to investigate conclusively
the relationship between socioeconomic conditions
and family structure, on the one hand, and functional
limitation and disability on the other. Associations
observed between the two may be due to the likelihood that (1) poor socioeconomic conditions and single-parent families lead to limitation and disability;
or (2) family economic and personal stress caused by
the disability of the child (a) caused parents to separate and divorce, (b) forced a parent to leave work
to be in the home full time, or (c) to spend-down
Hogan et al.
their assets for medical and rehabilitation services
until impoverished. To decompose these relationships
a panel study is essential.
In conclusion, in this paper we have created new
measures that distinguish areas of functional limitation and severity for a population of school-age children. These measures of functional limitation in
mobility, self-care, communication, and learning ability can be used in combination to assess type and
severity of comorbidity for school-age American children. We have used these new measures to calculate
population estimates of the number of children with
functional limitations. Our estimates of the proportion of children with any type of limitation or disability are consistent with population estimates by
other researchers. Our new measures produce improved estimates of functional limitation by providing concise indicators of the kind and severity of
functional limitation, and the extent to which children are characterized by multiple functional limitations. This information is useful both to more
appropriately characterize the disability population
of children and to formulate more appropriate public
policies to serve their needs. Finally, this study has
demonstrated that low family socioeconomic status,
poverty, and one-parent family structures are associated with a greater likelihood of functional limitation
and with more serious limitation.
ACKNOWLEDGMENTS
The authors acknowledge with thanks the statistical advice of Joseph Hogan, Ph.D., the health care
research expertise of Mary L. Fennell, Ph.D., the policy insights of William Marton, Ph.D. and Matthew
Stagner, Ph.D., and the assistance of Thomas Alarie
in the preparation of the manuscript. This research
was supported by NICHD/NCMRR Grant No. 1 R03
HD35376-01A1, "The Demography of Child Disability and Rehabilitation," Dennis P. Hogan, Principal
Investigator. An earlier version of this paper was presented at a seminar organized by Gerry Hendershot,
Ph.D., at the National Center for Health Statistics.
The opportunity to discuss our analysis of the NHISD data and to become familiar with other research
taking place on disability was immensely helpful. In
particular, we thank Wayne M. Garrison, Ph.D., and
Gordon Willis, Ph.D., of the National Center for
Health Statistics, and the anonymous reviewers for
their helpful comments. We particularly thank Milton
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Hogan et al.
Appendix. Scoring Algorithms Employed in the Creation of Ordinal Functional Limitation Scales for Children Aged 5-17
Mobility
Calculate only for those who have had the difficulty last or expect it to last for 12 or more months:
2 ADLs (in/out of bed/chair, getting around inside home)
Variables:
Response
Has difficulty only
Doesn't do/health only
Needs help/reminding/someone close by
Uses special equipment
Both needs help/reminding/someone close by and uses special equipment
Variables:
Without help and/or special equipment, how much difficulty with getting
into/out of bed/chair
Without help and/or special equipment, how much difficulty with getting
around inside the home
Score
0
1
2
0
Response
Has some difficulty
Has a lot of difficulty
Is completely unable
Not ascertained or don't know/refused (= some)
Variables:
With help and/or special equipment, how much difficulty with getting
into/out of bed/chair
With help and/or special equipment, how much difficulty with getting
around inside the home
Score
0
1
2
3
0
Response
Has no difficulty
Has some difficulty
Has a lot of difficulty
Is completely unable
Not ascertained or don't know/refused (= no difficulty)
Variables:
Score
1
1
2
2
3
Response
Has problem/delay in physical development
Doctor has mentioned this problem/delay
Range: 0-18
Self-Care
Calculate only for those who have had the difficulty last or expect it to last for 12 or more
months: 4 ADLs (bathing, dressing, eating, toileting)
Variables:
Difficulty
Difficulty
Difficulty
Difficulty
Response
Has difficulty only
Doesn't do/health only
Needs help/reminding/someone close by
Uses special equipment
Both help/remind/someone close by and uses special equipment
Score
1
1
2
2
3
215
Appendix. Continued
Variables:
Without
Without
Without
Without
help,
help,
help,
help,
how much
how much
how much
how much
difficulty
difficulty
difficulty
difficulty
with
with
with
with
bathing or showering
dressing
eating
toileting
Response
Has some difficulty
Has a lot of difficulty
Is completely unable
Not ascertained or don't know/refused (= some)
Variables:
With
With
With
With
help,
help,
help,
help,
how
how
how
how
Score
0
1
2
0
much difficulty
much difficulty
much difficulty
much difficulty
Response
Has no difficulty
Has some difficulty
Has a lot of difficulty
Is completely unable
Not ascertained or don't know/refused (= no difficulty)
Variables:
Score
0
1
2
3
0
Response
Needs help with personal care
Score
1
Range: 0-33
Communication/Sensory
Calculate only for those who have had the difficulty last or expect it to last for 12 or more months:
Variables:
Response
Has difficulty
Has difficulty
Has difficulty
Has difficulty
Variables:
Difficulty
Difficulty
Difficulty
Difficulty
Response
Has problem/delay in speech/language development
Doctor has mentioned this problem/delay
Variables:
Score
1
1
Response
Has difficulty getting along with others
Variables:
Score
1
1
1
1
Score
1
Response
Has significant problems with communicating
Score
1
Range: 0-8
Hogan et al.
216
Appendix. Continued
Social Cognition/Learning Ability
Variables:
Response
Has difficulty learning what others their age can learn
Variables:
Response
Has significant problems with understanding materials
Has significant problems with paying attention in class
Has significant problems with controlling behavior
Variables:
Response
Has learning disability
Score
1
1
Response
Has problem/delay in emotional/behavioral development
Doctor has mentioned problem/delay
Variables:
Score
1
1
1
Response
Has problem/delay in mental development
Doctor has mentioned problem/delay
Variables:
Score
1
Score
1
1