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Maternal and Child Health Journal, Vol. 1, No.

4, 1997

Improved Disability Population Estimates of Functional


Limitation Among American Children Aged 5-17
Dennis E Hogan, Ph.D.,1,3 Michael E. Msall, M.D.,2 Michelle L. Rogers, M.A.,1 and
Roger C. Avery, Ph.D.1

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

This paper (a) creates and validates measures


that are appropriate for use with population survey
data to assess functional limitation in mobility, selfcare, communication, and learning ability for schoolage American children; (b) provides population
estimates of the number of children with limitations
and of the point-prevalence rates of functional limitation in school-age children; and (c) examines these
limitations as a function of socioeconomic factors.

1 Population

Studies and Training Center, Brown University, Providence, Rhode Island.


2 Dcpartment of Biomedical Pediatrics, Brown University, and
Child Development Center, Rhode Island Hospital, Providence,
Rhode Island.
3Correspondence should be directed to Dennis P. Hogan, Ph.D.,
Population Studies and Training Center, Box 1916, Brown University, Providence, Rhode Island 02912. e-mail: Dennis_Hogan@brown.cdu

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.

The information collected in these studies has


been analyzed in government reports to count children with particular types of limitations and disabilities (1-3). Newacheck and Halfon (4) identify the
prevalence and impact of chronic physical or mental
conditions that cause childhood disability. Survey reports of many of these functional limitations are relatively rare and can severely limit attempts to
statistically identify estimates of population counts
and socioeconomic differentials. A complicating factor is that the statistics that do exist ignore the occurrence of multiple conditions that may increase the
likelihood of disability and complicate rehabilitation
(5). Conceptually appropriate measures of functional
limitation that are reliable and valid would provide
an improved basis for research and policy on disability
among children. This paper (a) creates and validates
measures that are appropriate for use with population
survey data to assess functional limitation in mobility,
self-care, communication, and learning ability for
school-age American children; and (b) provides population estimates of the number of children with limitations, and estimates the point-prevalence rates of
functional limitation in school-age children.
This paper also examines those limitations as a
function of family socioeconomic risk factors. The socioeconomic circumstances of the child's family are
central to the understanding of functional limitation
and disabilityidentification and diagnosis, treatment, and rehabilitation response (5,6). Family life
circumstances also are important since they may significantly buffer children with chronic medical conditions from potential functional limitation or
disability (7). Families belonging to a racial minority
group are likely to have less access to necessary specialized medical care and services, increasing the
likelihood of a functional limitation or disability. The
structure of the family impacts on time and socioeconomic resources, with poor socioeconomic origins
reducing the probability that a functionally limited
child will receive necessary special services (8).

METHOD
Data

The National Health Interview Survey (NHIS)


is conducted annually to monitor the health, health
care needs, and health care services of the nation.
The NHIS annually provides demographic, socioeco-

Improved Disability Population Estimates


nomic, and health information for a nationally representative sample of noninstitutionalized persons
and their households. The NHIS includes about
122,000 persons in 48,000 households, with an average response rate of approximately 95%. The principal source of data for this study is the 1994
NHIS-D. The 1994 NHIS-D includes 21,415 children
5 to 17 years of age (9-10). The 1994 NHIS and the
Disability Supplement included batteries of questions
measuring medically diagnosed problems or conditions, limitations in daily activities or routine functions, developmental levels, the use of medical
facilities, medications, special diets and equipment,
along with participation in special programs or activities.
An important potential threat to the representativeness of the sampled population in this study
is the reliance on a household-based sample. Some
small proportion of children, and a possibly higher
proportion of children with severe disabilities, may
be in institutionalized settings and not represented
in the NHIS-D. Data from the 1990 Census of Population on children in institutions, from state and
county data on handicaps among children in foster
care in non-household settings (11: Tables 1 and 4),
and from SIPP estimates on the rate of disability
(12), provide the basis for consistent estimates that
only about 2.0% of all disabled children are missed
by a household-based sample.
Classifying Disability
This analysis is guided by the National Center
for Medical Rehabilitation Research (NCMRR)
framework for the classification of disability (13: 3338). This model emphasizes measures across various
life domains, involving physical functioning, social relationships, normal activities, and community life.
Three aspects of disability are of interest: (1) functional limitation is the restriction or lack of ability to
perform an action in the manner or with the range
consistent with the purpose of an organ or organ system; (2) disability is the inability or limitation in performing tasks, activities, and roles to levels expected
in physical and social contexts; (3) societal limitation
refers to the restriction, attributable to social policy
or barriers (structural or attitudinal), that limits fulfillment of roles or denies access to services and opportunities that are associated with full participation
in society.

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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-

tated by the lack of any obvious method to rank or


score each functional limitation. The scales were examined for reliability using the Cronbach coefficient
alpha test statistic. The initial Cronbach alpha for
each of the four areas of functional limitation was
calculated. Items were removed if they had an alpha
below the overall Cronbach alpha or if they had a
correlation of less than 0.30 with the total scale (constructed from the other variables). These deleted
variables typically were items with very few positive
responses, or screening items that were better measured by other items in the scale.
These detailed ordinal scales were then collapsed into categories that represent the severity of
functional limitation. Children with a score of 1 or
2 were classified as having a mild limitation in each
area of functioning. A score of 4 or higher indicates
a severe limitation.
A summary measure of functional limitation was
created to take into account comorbidity among areas of functional limitation. This summary measure
was obtained by combining information on the number of different functional dimensions on which a
child has a limitation, incorporating information
about whether a mild or moderate/severe limitation
is present. This results in a measure of the severity
of functional limitation with four categories: (a) no
limitation, (b) mild limitation in one or more areas
of functioning, (c) moderate/severe limitation in one
area of functioning (with zero to three types of mild
functional limitation), and (d) two or more areas of
moderate/serious functional limitation (with zero to
two types of mild functional limitation).
Population Prevalence Estimates
Upon successful completion of these scale creation procedures, the measures of functional limitation were used to estimate the point prevalence rate
and population count of each type of limitation by
degree of severity. The summary measure of the severity of functional limitation was used to estimate
the point prevalence rate and population count of
comorbidity of types of functional limitation among
children, by degree of severity.
Socioeconomic Risk
The final step in the analysis was to use ordered
logistic regression procedures to determine how the

Improved Disability Population Estimates


summary measure of the severity of functional limitation is a function of socioeconomic characteristics
of the child's family. Statistical tests for the appropriateness of this proportionality assumption (using
a .05 level of significance) indicates that this is a satisfactory assumption.
These population estimates and multivariate
models were prepared using specialized software
(SUDAAN; 20) that takes into account the complex
sample design of the NHIS, thus producing true estimates of standard errors.

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

Source: 1994 National Health Interview Survey, Disability Supplement (N = 21,415).

6,075,000 school-age American children (12.3%)


have some type of functional limitation. Confidence
intervals for these point-prevalence estimates of
population counts are shown in the final column of
Table I.
Moderate and severe limitation in functioning
also differ by type. Mild mobility limitation characterizes 1.1% of children, with another 0.2% having
a moderate/severe limitation. (A moderate/severe
limitation includes, for example, children with difficulty both getting in or out of a bed/chair and moving
around the house without help.) Applying these sam-

ple estimates to obtain population counts, in the


United States about 107,000 children 5 to 17 years
of age experience moderate/severe mobility limitation. Among those with a self-care limitation, moderate/severe limitations characterize about 254,000
(0.5%) of school-age children. (Moderate/severe
limitations includes children with difficulty on 3 or
more activities of daily living, and children who need
help and/or special equipment with one or more activities of daily living.) About 584,000 children
(1.2%) have moderate/severe communication limitations (indicating difficulties in communicating basic

Improved Disability Population Estimates

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

No disability (Omitted category)


Limited, not in school (Intercept 4)
Limited, in school (Intercept 3)
Requires special services in school (Intercept 2)
Cannot attend school (Intercept 1)

Societal limitation

Parameter
estimate

Odds
ratio

-2.944 (.35)
-3.335 (.35)
-5.356 (.41
-7.644 (.67)

No societal limitation (Omitted category)


Parent or public (Intercept 2)
Parent and public (Intercept 1)
Mobility
Self-care
Communication
Learning ability
-2 Log Likelihood, df (p)

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.

needs to the family). Limitations in learning ability


are much more common among school-age children,
with 1,974,000 (4.0%) having moderate functional
limitation in learning and an additional 1,564,000
(3.2%) having a severe learning limitation. (A severe
learning limitation is characterized by limitations on
multiple measures of learning, and a report that a
doctor has mentioned a developmental delay or
learning disability.)
Many American children have limitations in
more than one area of functioning. Of the 4.0 million
children who have at least one serious functional
limitation, 1.9 million additionally have one or more
mild limitations in other types of functioning. A total

of 973,000 children (2.0%) have serious limitations


in two or more 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 (tabulation not shown).
Socioeconomic Risk

Table IV presents an ordered logistic regression


model of family socioeconomic risk factors in functional limitation. The importance of parental resources shows up quite clearly in the differentials in
prevalence of functional limitation by respondent
parent's education and family poverty. The preva-

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

Family economic situation


Not in poverty (omitted category)
In poverty

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

House/apartment (omitted category)


Mobile home

0.300 (.18)c

1.000
1.350

Phone in household (omitted category)


No phone in household

0.219 (.20)b

1.000
1.244

-2 Log Likelihood, df (p)

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.

lence of a functional limitation by education of the


NHIS-D respondent for the child is about one-quarter higher among children whose parent has less
than a college education. Similarly, children in families with below poverty-level incomes are 40% more
likely to be functionally limited. Children from oneparent households are 62% more likely than children in two-parent households to have a functional
limitation. Children living in homes where no parent
is present (typically, grandmother-headed homes or
fosterage arrangements) are even more disadvantaged. Children living in a home with one parent
(typically the mother) and one other adult (for ex-

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.

Improved Disability Population Estimates


It is important to understand the cumulative effects of disadvantage on the likelihood that a child is
functionally limited. Using the prediction equations
associated with the ordered regression models of Table IV, we calculated the prevalence of serious functional limitation for two groups of children: (a)
children in a two-parent household in which the respondent adult has a college education, and the family income is above the poverty level; and (b) children
in a one-parent household in which the parent has
less than a high school diploma, and the family income is below the poverty level. The results dramatically demonstrate the social stratification of functional
limitation among American children. The children
from poorer socioeconomic origins are 2.75 times
more likely than children from favorable origins to be
at each level of severity of functional limitation.

CONCLUSIONS AND IMPLICATIONS


This paper created measures that are appropriate for use with population survey data to assess
functional limitation in mobility, self-care, communication, and learning ability for school-age American
children. While specifically applied to data from the
1994 NHIS-D, these procedures can be applied to
calculate measures of functional limitation in other
surveys that collect measures of functioning and activities of daily living for children. This would improve the analysis of such data by grouping multiple
items into four key functional areas that are independently related to disability and societal limitation.
These four measures of functional limitation may be
examined singly or in combination, using the measure of severity of functional limitation and comorbidity also developed in this paper. Together these
measures can provide investigators with more valid
and reliable measures for population-based studies of
child disability.
These new measures of functional limitation
provide the basis for improved population estimates
of the point-prevalence rates of functional limitation
in school-age children. A total of 6.1 million children
have some type of limitation. Of these, 4.0 million
children have at least one serious functional limitation. Comorbidity in functional limitation is notable1.9 million children have, in addition to their
serious limitation, one or more mild limitations in
other types of functioning. A total of 973,000 schoolage children have serious limitations in two or more

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

Improved Disability Population Estimates


Kotelchuck, Ph.D., the editor of the Maternal and
Child Health Journal, for his support and advice in
shaping this article.

REFERENCES
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2. Adams PF, Marano MA. Current estimates from the National
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3. Verbrugge LM. The Disability Supplement to the 1994-95 National Health Interview Survey (NHIS-Disability). Paper prepared for the Division of Health Interview Statistics, National
Center for Health Statistics, Hyattsville, MD 20782 (October),
1994.
4. Newacheck P, Halfon N. Prevalence and impact of disabling
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Government Printing Office, 1995.
10. U.S. Department of Health and Human Services. 1994 National Health Interview Survey on Disability, Phase 1. Machine Readable Data. CD-ROM Series 10-8 (SETS Version
1.22a), 1996.

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11. Hill BK, Lakin KC, Novak AR, White CC. Foster care for
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15. Eyman RK, Grossman HJ, Chaney RH, Call TL. Survival of
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18. Msall M, DiGaudio K, Duffy L, et al. WeeFIM: Normative
sample of an instrument for tracking functional independence
in children. Clin Pediat 1994;33:431-38.
19. Ottenbacher K, Taylor E, Msall M, et al. The stability and
equivalence reliability of the functional independence measure for children (WeeFIM). Develop Med Child Neurol
1996;38:907-16.
20. Shah BV, Barnwell BV, Bieler GS. SUDAAN users manual
and software, release 7.0. Research Triangle Park, NC: Research Triangle Institute, 1996.
21. Newacheck P, Taylor W. Childhood chronic illness: Prevalence, severity, and impact. Am J Public Health
1992;82(3):364-71.
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214

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:

Difficulty with getting into/out of bed/chair


Difficulty with getting around inside the home

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

Has problem/delay in physical development


Doctor has mentioned this problem/delay
Score
1
1

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

with bathing or showering


with dressing
with eating
with toileting

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

Improved Disability Population Estimates

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

with bathing or showering


with dressing
with eating
with toileting

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

Needs help with personal care

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

communicating to people outside of family


communicating to family members
communicating basic needs to family
understanding when others talk or ask questions

communicating to people outside of family


communicating to family members
communicating basic needs to family
understanding when others talk or ask questions
Problem/delay in speech/language development
Doctor has mentioned this problem/delay

Response
Has problem/delay in speech/language development
Doctor has mentioned this problem/delay
Variables:

Score
1
1

Difficulty getting along with others

Response
Has difficulty getting along with others
Variables:

Score
1
1
1
1

Score
1

Significant problems with communicating

Response
Has significant problems with communicating

Score
1
Range: 0-8

Hogan et al.

216
Appendix. Continued
Social Cognition/Learning Ability
Variables:

Difficulty learning what others their age can learn

Response
Has difficulty learning what others their age can learn
Variables:

Significant problems with understanding materials


Significant problems with paying attention in class
Significant problems with controlling behavior

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

Problem/delay in emotional/behavioral development


Doctor has mentioned problem/delay

Response
Has problem/delay in emotional/behavioral development
Doctor has mentioned problem/delay
Variables:

Score
1
1
1

Problem/delay in mental development


Doctor has mentioned problem/delay

Response
Has problem/delay in mental development
Doctor has mentioned problem/delay
Variables:

Score
1

Score
1
1

Has learning disability


Score
1
Range: 0-9

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