Identifying Children with Special
Health Care Needs in the National
Health Interview Survey: A New
Resource for Policy Analysis
Amy J. Davidoff
to identify children with chronic illness through a noncategorical approach, as
exemplified by the Children with Special Health Care Needs (CSHCN) screener. The
ability to use the NHIS to identify CSHCN will permit analyses of the effects of welfare
reform and public insurance eligibility expansions during the late 1990s on CSHCN.
Data Sources. The NHIS from 1997, 1999, and 2000. The NHIS is an ongoing
household survey representative of the civilian, noninstitutionalized population of the
Study Design. Survey items were selected from the NHIS and thresholds designated
to replicate the content and logic of the CSHCN screener. The screener asks explicit
questions concerning an elevated need for, or use of health care services, and about
limitationsinactivity,both causedbyachronichealth condition.The algorithmcreated
was applied to the pooled 1999–2000 NHIS to generate national prevalence estimates.
Multivariate logistic regression was estimated to determine the effect of having
particular demographic characteristics on the likelihood of being identified as CSHCN.
Log odds ratios were compared to those from earlier NHIS-based estimates and from a
pretest of the CSHCN screener.
Principal Findings. An estimated 12 percent of noninstitutionalized children aged 0
through 17 have a chronic condition that results in elevated service use or limitations in
less serious or shorter-term conditions. The estimated effects of child characteristics on
the likelihood of being identified as having special health needs are similar but not
identical to other algorithms that have been used to identify CSHCN.
Conclusions. It is feasible to use existing questions in the NHIS to identify a
population of CSHCN that is substantially similar to children identified through other
algorithms or through use of a screening instrument imbedded in a household survey.
The availability of this algorithm will permit use of the NHIS for important analyses of
the effects of welfare reform and public insurance expansions on children with special
health care needs.
Key Words. Children, chronic illness, measurement, CSHCN screener
become an important focus for providers and policymakers in the arenas of
health care and education. In the changing policy environment, with recent
reforms to the welfare system, expansions in use of managed care, and
expansions of public insurance eligibility through the State Children’s Health
Insurance Programs (SCHIP), ongoing assessment of the extent to which the
health care delivery system meets the needs of these children is essential.
Researchers have begun to address the effects of these policy changes for
children generally (e.g., Blumberg, Dubay, and Norton 2000; Davidoff,
Garrett, and Yemane 2001; Garrett, Davidoff, and Yemane 2003.) However,
the ability to monitor the effects of these policies on children with special
health care needs (CSHCN) has been limited due to the difficulty of identi-
fying this population in data sources generally available to policy researchers.
of CSHCN routinely have been acknowledged (Newacheck et al. 1996). The
1994–1995 disability supplement to the National Health Interview Survey
(NHIS-D) was used by several research groups to characterize CSHCN na-
care (Newacheck et al. 1998; Stein and Silver 1999). However, the NHIS-D
has not been repeated, precluding use of these estimates to provide a baseline
for evaluation of recent policy changes.
In response to the need for better measurement and monitoring, the
Maternal and Child Health Bureau (MCHB) of the Health Resources and
et al.2002). Thistelephonesurvey,fieldedfrom October 2000 to March 2002,
provides information on demographics, health insurance, household income,
access to care, and family impacts. The survey includes approximately 750
children with special health care needs in each state, and is expected to be
repeated every four or five years.
Children in the National Survey of CSHCN are identified as having
special needs using the CSHCN screener (Bethell, Read, Stein et al. 2002).
The author wishes to acknowledge the very helpful suggestions of Christine Bethell, Jack Hadley,
Ian Hill, Lynda Honberg, Paul Newacheck, Ruth Stein, and Bonnie Strickland. Jennifer Lesko
provided excellent research assistance. Funding for this research was provided by the Maternal
and Child Health Bureau, Grant R40 MC 00292. The opinions expressed are those of the author
and do not reflect those of the Urban Institute or the Maternal and Child Health Bureau.
Address correspondence to Amy J. Davidoff, Ph.D., Senior Research Associate, The Urban
Institute, 2100 M Street N.W., Washington, DC 20037.
54 HSR: Health Services Research 39:1 (February 2004)
The CSHCN screener identifies children with elevated or unusual needs for
health care or educational services due to a chronic health condition. In
addition to the National Survey, the CSHCN screener was added to the
Medical Expenditure Panel Survey (MEPS) beginning in 2000 and on a trial
basis to the latter half of the 2002 NHIS. Thus each of these surveys will have
an explicit mechanism to identify CSHCN, and will provide important
resources for policy researchers. However, the base period for each of these
surveys follows the changes in health and welfare policy that occurred during
the middle and latter half of the 1990s.
The purpose of this project is to assess the feasibility of using an ongoing,
nationally representative household survey that covers this recent period of
to create an algorithm that replicates the content and logic used in the CSHCN
screener. I select the CSHCN screener as the model because, although there is
no gold standard, the policy research community has converged in its support
for this mechanism to identify CSHCN. I estimate the national prevalence of
CHSCN, and report on the sensitivity of the estimates when the assumptions of
the algorithm are altered to be more or less inclusive. These estimates are
compared with those available from the 1994–1995 NHIS-D andfrom a pretest
of the national CSHCN survey. Finally, I compare cash assistance and public
insurance enrollment for CSHCN between 1997 and 2000 to demonstrate the
unique contribution that the NHIS can make to assessing how major policy
changes affect children with special health care needs.
Historically, researchers and policymakers used multiple approaches to
health and education programs (Aron, Loprest, and Steuerle 1996; New-
acheck et al. 1998). For example, some programs focused on children with
diagnosed chronic medical conditions, while others focused on children with
specific functional limitations. These mechanisms for identifying children are
referred to as ‘‘categorical’’ approaches, because children were included or
excluded from the definition based on their inclusion in a previously specified
state Title V programs during the early 1990s, and calls for a definition that
focused on the consequences of chronic illness for children, the MCHB
Children with Special Health Care Needs in the NHIS55
Division of Services for Children with Special Health Needs developed the
following definition to be used for planning and advocacy purposes:
Children with special health care needs are those who have or are at increased
risk for a chronic physical, developmental, behavioral, or emotional condition
and who also require health and related services of a type or amount beyond
that required by children generally. (McPherson et al. 1998)
In an effort to describe and quantify the number of children who met the
MCHB criteria for having special health needs, two research teams analyzed
data from the 1994 and 1995 NHIS. Through 1996, the NHIS consisted of a
core questionnaire that collected information on demographics, health status,
and use of health care services. Regular supplements included information on
health insurance and detailed information on family income sources and
amounts. During 1994 and 1995, special supplemental questionnaires on
disability (NHIS-D) were included. Specific questions and responses from
these special modules were combined with data from the core instrument to
Newacheck et al. (1998) used the 1994 and 1995 NHIS to identify two
children reported to use an elevated level of health care services due to
a chronic physical, developmental, behavioral, or emotional condition. A
second group was presumed to need services because they had a functional
limitation or disability. The definition did not include children at risk of
developing a chronic condition. The definition identified 18 percent of
children under age 18.
Stein and Silver (1999) based their work with the NHIS on a theoretical
framework and a screening questionnaire (the QuICCC——the Questionnaire
for Identifying Children with Chronic Conditions) designed to identify the
target population (Stein, Westbrook, and Bauman 1997). The QuICCC uses a
noncategorical approach, identifying children not on the basis of a specific
diagnosis, but whether the child experiences any consequences associated
personal assistance to compensate for a limitation in function, or other service
use above routine. This more restrictive definition identified 14.8 percent of
children under age 18 as having special health needs.
More recently, researchers from the Foundation for Accountability
developed a screening instrument to identify children with special health care
needs (CSHCN screener), modeled after the QuICCC (Bethell, Read, Stein
et al. 2002). This instrument asks explicit questions about whether a child
56 HSR: Health Services Research 39:1 (February 2004)
needs or uses more medical care or educational services than is usual for most
children of the same age, or is limited or prevented in his or her ability to do
the things most children the same age can do, all associated with a health
problem that has lasted or is expected to last 12 months or longer. As a
screening instrument, the CSHCN screener captures a more limited
population of children than the QuICCC (Bethell, Read, Neff et al. 2002).
Starting in 1997, the NHIS underwent a major redesign, changing the
focus of the survey from the prevalence of specific medical conditions and
detailed use of health care services, to the prevalence of functional limitations
and disabilities. Information is still collected on a subset of the most common
chronic conditions. In addition, there was a shift in the survey design.
Previously, all persons responded to questions in the core survey, except that
the list of medical conditions was split into six sublists, and each family was
ascertain the presence of a broad range of chronic conditions for any one
person. With the redesign, a series of questions on demographics, disability,
disabling conditions, access to care and use of services, health insurance, and
income are asked of all respondents. Information on the presence of specific
medical conditions, and additional detail on access and use are asked of a
sample child in each family. The content and design of the revised NHIS
makes it much more appropriate for the task of identifying CSHCN,
compared with the previous core instrument.
This analysis uses the 1997, 1999, and 2000 National Health Interview Survey
(NHIS). The NHIS is a continuous household survey that is nationally
representative of the civilian, noninstitutionalized population of the United
calendar year. The content and design of the NHIS were described in the
OPERATIONALIZING THE CSHCN SCREENER USING
The Children with Special Health Care Needs (CSHCN) screener includes
five question sets. Each question set asks whether the child has some type of
elevated or unusual need for services, or a limitation in activity. Follow-up
Children with Special Health Care Needs in the NHIS57
questions determine whether the service need or limitation is due to a
chronic health condition. A child who meets any of the five criteria is identi-
fied as having a special health need. Following the organizational structure
of the CSHCN screener, I selected survey items from the NHIS and re-
sponses that would designate children meeting each of the five screening
criteria. An algorithm was structured to identify children who met any of the
The screening question content areas, the individual NHIS questions,
and the prevalence of the various indicators used in the algorithm are
described in Table 1. A relatively large proportion of children (10.8 percent)
were reported to have a health problem for which they have taken
prescription medications for at least three months. Smaller percentages
reported that the child had seen or talked to a physical, occupational,
respiratory, or speech therapist or audiologist in the past year (4.5 percent);
and 5.2 percent reported that the child had seen or talked to a mental health
elevated or unusual service use. These include numbers of visits to health
professionals, overnight hospital stays, home care visits, hospital emergency
room visits, and surgical procedures, all in the past 12 months, whether the
child currently receives special education or early intervention services, and
whether the child has an impairment that requires use of special equipment.
The number of surgical procedures was not used in the algorithm because
procedures to repair minor defects (e.g., hernia repair) or otolaryngology
procedures are very common in children. Likewise, the number of hospital
emergency room visits was not used, because high emergency room use may
represent poor access to primary care, rather than the consequence of a
Thresholds for the number of office visits, home care visits, and hospital
stays were established after examining the population distributions; levels
were selected to capture approximately 10 percent or fewer children. The 10
percent target is somewhat arbitrary; the MCHB definition does not provide
guidance as to what constitutes a need for services ‘‘beyond that required by
children generally.’’ Approximately 2.7 percent of children had an overnight
stay not related to birth, and only 1 percent of children had any home care
visit. The presence of either was used as an indicator for elevated service use.
The choice of a threshold for physician office visits was constrained because
the visit data are reported in ranges. An estimated 7.2 percent of children had
10 or more visits. The next lowest threshold available was ‘‘four or more
58 HSR: Health Services Research 39:1 (February 2004)
Children with Special Health Care Needs Screener Criteria and Elements Selected from the NHIS to
Operationalize CSHCN Screen
% of Children
Screener criterion: Child currently needs or uses medicine prescribed by a doctor, other than vitaminsn
NHIS: Child has problem for which he/she has taken prescription medications regularly for three or more months
Reports unmet need for prescription medications, past 12 months, due to cost
Screener criterion: Child needs or uses more medical care, mental health or educational services than is usual
for most children of the same agen
NHIS: Child reported to have at least one of the following indicators of elevated service need/use:
Has impairment or health problem that requires use of special equipment, including brace, wheelchair, or
hearing aid, excluding eyeglasses and special shoes
Ten or more visits to a health professional, past 12 months
One or more overnight hospital stays other than for birth, past 12 months
Any homecare visits, past 12 months
Currently receives special education or early intervention services
Reports unmet need for medical care, past 12 months, due to cost
Screener criterion: Child is limited or prevented in any way in his/her ability to do the things most
children of the same age can don
NHIS: Limited in any way, all ages
Needs help from others with any personal care needs, age 43
Has mobility impairment that has lasted or is expected to last 412 months
Hearing ability without hearing aid——has a lot of trouble
Children with Special Health Care Needs in the NHIS 59
% of Children
Screener criterion: Child needs or gets special therapy, such as physical, occupational, or speech therapyn
NHIS: Family member has seen/talked to a physical therapist, speech therapist, respiratory therapist, audiologist,
or occupational therapist in past 12 months concerning the health of the child
Screener criterion: Child has emotional, developmental, or behavioral problem for which he/she needs treatment or counseling
NHIS: Family member has seen/talked to mental health professional (psychiatrist, psychologist, psychiatric
nurse, clinical social worker) in past 12 months concerning the health of the child
Reports unmet need for mental health counseling, past 12 months, due to cost
Source: Author’s analysis of the 1999, 2000 National Health Interview Survey.
nDue to medical, behavioral, or other condition that has lasted or is expected to last 12 months or longer.
60 HSR: Health Services Research 39:1 (February 2004)
visits,’’ which captured 32.2 percent of children, too large a group for the 10
One of the limitations of the NHIS measures of elevated service use,
compared withtheCSHCN screener,isthatthey do not capturechildren who
need, but may not receive an elevated level of services. The NHIS includes
questions about unmet need for a variety of services. In sensitivity analyses I
included unmet medical, prescription drug, and mental health need in the
algorithm to capture CSHCN who may have limited access to care.
Overall, 6.5 percent of children are reported to be limited in some way
due to a physical, mental, or emotional problem. Relatively few children (0.4
percent) have reported limitations in activities of daily living and only 1.6
percent report mobility impairments.
Most of the available NHIS questions concerning service use do not
explicitly link to the presence of a chronic health condition, but the algorithm
created to identify CSHCN requires that the child be reported to have a
chronic condition. The information on chronic health conditions comes from
two sources. For children reported to have a limitation of activity, information
is collected on the NHIS concerning the type and duration of the condition
that causes the limitation. The types of conditions identified include vision
problems, hearing problems, speech problems, asthma or breathing prob-
lems, birth defects, injuries, mental retardation, other developmental delay,
chronic conditions that had been present for at least 12 months or since birth.
The NHIS also includes questions concerning the presence of a series of
medical conditions. The questions are asked in two ways: whether a physician
or health provider ever told the parent that the child had a specific chronic
condition, and whether the parent reports that the child had selected
conditions or symptoms in the past12 months. The first group of ‘‘diagnosed’’
developmental delay, autism, Downs syndrome, cerebral palsy, muscular
dystrophy, sickle cell anemia, diabetes, arthritis, congenital or other heart
problems, and asthma. The asthma question is refined by follow-up questions
concerning the presence of an asthma attack, and the need for an emergency
room visit in the past 12 months. The group of parent-reported symptoms or
conditions includes seizure, respiratory allergies, eczema or skin allergies,
food or digestive allergies, frequent diarrhea or colitis, anemia, or frequent
headaches. An indicator was created for children reported to be ‘‘unhappy,
sad, or depressed’’ often during the past six months as a proxy measure for
Children with Special Health Care Needs in the NHIS61
children with depression or anxiety. Very low birth weight (under 1,500gm)
children under age two were identified due to their elevated need for
monitoring,evenin theabsence of reportedlimitations or medical conditions.
Using the individual measures from the two sources, I created a
‘‘limited’’ and a ‘‘comprehensive’’ indicator for chronic conditions. The
comprehensive indicator includes any chronic condition associated with a
limitation of activity,any of theconditions diagnosed by a health professional,
with the condition that the child must have had active asthma symptoms
within the past year, those symptoms or conditions reported by parents in the
past 12 months, the childhood depression indicator, and the children with
very low birth weight. The limited condition indicator excludes those
symptoms or conditions reported solely by parents because some of the
conditions tend to be less serious, and the duration is not reported.
Prevalence estimates for the individual conditions and for the various
summary measures of chronic conditions are provided in Table 2. The
comprehensive condition measure captures more than 40 percent of all
children, suggesting that it captures a broad array of children with conditions
that vary with respect to seriousness and duration. The limited measure
captures almost 18 percent of children. An emotional, developmental, or
behavioral condition is reported for 10.6 percent of children.
A general limitation to use of household survey data to identify children with
special health care needs is the reliance on parent or child report of medical
conditions,activitylimitations,and use ofhealth careservices.However,allof
the national estimates of the prevalence of CSHCN rely on self-report. There
are two additional limitations that are specific to this NHIS algorithm. First,
some children with chronic medical conditions may not be captured if their
condition does not limit activities and is not included in the battery of
questions concerning medical conditions. This limitation might cause the
there is not an explicit linkage between questions about service use and
service use associated with one or more acute conditions, and also report a
chronic condition that is not associated with either a limitation of activity or
elevated service use.Thischild would beidentifiedbythe algorithm ashaving
a special health need, resulting in an overstatement of the prevalence of
CSHCN. Although it is not possible to quantify the magnitude of error
62 HSR: Health Services Research 39:1 (February 2004)
Table2: PrevalenceofReported ChronicHealthProblemsamongChildren
Selected Medical Conditions
Doctor or health professional ever told you child had:
Attention deficit disorder
Other developmental delay
Sickle cell anemia
Congenital or other heart disease
Asthma, with episode in past 12 months
Any of listed conditions
During past 12 months has child had:
Eczema or skin allergy
Food or digestive allergy
Severe headaches or migraines
Sequent diarrhea or colitis
Any of conditions reported in past 12 months
Child has been unhappy, sad, or depressed
often during past six months (age 4–17)
Child very low birthweight (VLBW*), o2 years old
Child has chronic condition that limits activity
Child in fair or poor health
Summary Measures of Health Conditions
Comprehensive: Any listed conditions diagnosed
by health professional, conditions during past 12 months, child
depressed, VLBW*, under 2 years or child has chronic
condition that limits activity
Limited: Any of listed health conditions diagnosed by health
professional, child depressed, child VLBW*, under 2 years
or child has chronic condition that limits activity
Emotional, developmental, or behavioral conditions: health
professional diagnosed ADD, mental retardation, other
developmental delay; child depressed or child has chronic
developmental or behavioral condition that limits activity
Source: Author’s tabulations of 1999–2000 National Health Interview Survey.
Children with Special Health Care Needs in the NHIS63
associated with this limitation given the current data, the error acts in the
opposite direction of the first limitation described and is expected to be small
Measuring Characteristics of Children and Families
Measures of age, race and ethnicity, gender, family structure, insurance
files of the NHIS. Records for parents and children were linked to create
measures of family structure, parent education, and poverty status on the
child’s record. Indicators for child receipt of Temporary Assistance for Needy
Families (TANF), current enrollment in Medicaid or SCHIP, and for any
current insurance coverage were created.
2000. Sample proportions were also calculated for selected variables for 1997
and for 2000, and comparisons were made across the two years. Standard
errors were adjusted for the NHIS complex survey design. All analyses were
performed using Stata software, version 8.
National Prevalence of Children with Special Health Care Needs
Table 3 presents estimates of the proportion of children who meet each of the
five criteria in the CSHCN screener. The first column reports the percentage
of children who meet the first stage criterion of having elevated or unusual
need for services or a limitation of activity. The second and third columns
show the effects of limiting further to those children who also have a chronic
health condition, definedusing thelimited setof conditions (Method 1),or the
comprehensive set of conditions (Method 2).
The category that consistently captures the largest group of children is
elevated or unusual service use, which includes almost 14 percent of children.
The next largest group is prescription drug use (10.8 percent), followed by
activity limitations (7.3 percent), mental health use (5.2 percent), and use of
special therapies(4.5 percent). Overall, almost one quarterof children meet at
least one of the five criteria. A smaller percentage of children meet the criteria
for both elevated service use or activity limitation and a chronic health
condition. For example, using Method 1, only 7.6 percent of children report
64 HSR: Health Services Research 39:1 (February 2004)
elevated or unusual service use, and report a condition from the limited
condition list. Most of the children who have limitations of activity also
report a condition from the limited list, whereas only 60 percent of children
using prescription drugs and a similar percent of those for whom a
mental health visit is reported have conditions that appear on the limited
list. Overall, using Method 1, 12 percent of children meet the criteria for
Sensitivity to the Health Conditions Included. When the more comprehensive
set of chronic health conditions is used under Method 2, a greater percent of
children meet both the service use or limitation criteria and report a chronic
health condition. The biggest increase is in the percentage of children that
have elevated or unusual service use and have a health condition from the
condition from the limited list. Overall, the prevalence of CSHCN in the
population under Method 2 is estimated at 17.6 percent.
Sensitivity to the Addition of ‘‘Unmet Need’’ to the Algorithm. The addition of
unmet need to the indicators for elevated service use has a relatively small
effect on the resulting prevalence estimates. When unmet need criteria are
included with the limited condition set, 12.4 percent of children are identified
as CSHCN, compared with 12 percent under Method 1. The increment is
larger when the comprehensive condition set is used, with the prevalence
Table3:National Prevalence of Children with Special Health Care Needs
Meets Use or
Child currently needs/uses prescription
Child needs/uses more medical care,
mental health or educational services
Child is limited in ability to do things
Child needs/uses special therapy
Child needs/uses mental health treatment
Child meets any criteria for CSHCN
13.8% 7.6% 10.6%
Source: Author’s analysis of 1999–2000 National Health Interview Survey.
Children with Special Health Care Needs in the NHIS65
estimate increasing to 18.8 percent. The relative lack of sensitivity of the
estimates to inclusion of unmet needs suggests that limiting measures in the
algorithm to indicators of elevated service use would exclude only a small
number of possible CSHCN.
The NHIS Estimates in Context
Prior research efforts to identify and characterize children with special health
care needs nationally provide useful points of comparison for the current
estimates. Table 4 presents results from logistic regressions, showing the
relative importance of age, race, gender, family structure, parent education,
and poverty status on the likelihood that a child will be identified as a special
needs child. The 1994–1995 NHIS-D estimates for the QuICCC and the
MCHB definition are from Stein and Silver (2002). The estimates for the
CSHCN screener are from a pretest of the National Survey from Bethell,
Read, Stein et al. (2002). Estimates for Method 1 from the 1999–2000 NHIS
Qualitative comparison with the other data sources and algorithms
income are more likely to be identified as CSHCN. When Method 2 is used,
the age gradient is less steep, suggesting that younger children are more likely
to be identified as CSHCN, and males are overrepresented to a lesser degree
(data not shown). The relative effects of age, race/ethnicity, family type, and
povertystatusonthelikelihoodthatachild isidentifiedasCSHCN aresimilar
across the studies. Differences between the pretest of the CSHCN screener
and the three NHIS based estimates may reflect different measurement
approaches (i.e., use of the CSHCN screener in the survey as opposed to
algorithms created from existing survey questions). Alternatively, the
differences may be due to different sample frames, use of telephone versus
an in-person survey, and the absence of controls for other important
determinants of CSHCN in the logistic regression.
Demonstrating Use of the NHIS to Monitor the Effects of Policy on CSHCN
One of the potential roles for the NHIS is to monitor the effects of change in
national policies, such as welfare reform or SCHIP expansions, on the health,
health insurance, and income support for CSHCN. To demonstrate this
capability I use Method 1 to identify CSHCN on 1997 and 2000 NHIS data,
and compare receipt of cash assistance, public insurance enrollment, and any
66 HSR: Health Services Research 39:1 (February 2004)
insurance coverage over time for CSHCN and other children. The 1997 data
capture sources of income in 1996, providing a useful baseline for an
assessment of changes in AFDC/TANF participation associated with passage
of the Personal Responsibility and Work Opportunity Reconciliation Act in
1996. Likewise, the 1997 estimates of current insurance coverage provide a
Being Identified as a CSHCN——Comparison of Estimated Odds Ratios across
Effect of Child and Family Characteristics on the Probability of
Child and Family
At or above
Source: Estimates for the MCHB and QuICCC definitions are reproduced with permission from
Stein and Silver 2002.
Estimates for the CSHCN screener pretest are reproduced with permission from Bethell, Read,
Stein et al. (2002).
Estimates from the 1999–2000 NHIS are the author’s analysis.
Children with Special Health Care Needs in the NHIS67
useful baseline,prior to implementation of SCHIP during thelater 1990s. The
results are presented in Table 5.
Estimates from the NHIS provide evidence of greater receipt of cash
assistance among CSHCN compared with other children, and a precipitous
drop between 1996 and 1999. For CSHCN, the 1999 TANF participation rate
of 7.0 percent is 5.6 percentage pointsand 45 percent lower thanthe1996 rate
receiving TANF assistance, a rate 4.2 percentage points and 45 percent lower
than the rate in 1996. Thus the cash assistance participation rate declined
slightly more among CSHCN compared with other children, but the rate of
decline was similar.
Welfare reform and improvements in the economy were associated with
eligibility through SCHIP combined with outreach efforts encouraged
enrollment. Public insurance enrollment among CSHCN is significantly
higher than among other children in both 1997 and 2000 (28.6 percent versus
18.1 percent in 2000), but the changes over time were not significant for either
group. This suggests that the two policy forces acted in equal and opposite
directions, and there was no differential effect on CSHCN. Likewise,
examining the overall insurance rate, the results in Table 5 suggest higher
insurance rates for CSHCN than for other children (91.1 percent versus 88.6
percent in 2000). The combined increases in public and other insurance
Programs, 1997 and 2000
Participation by CSHCN in Public Insurance and Cash Assistance
Child Receives TANF 7.0
Children Enrolled in Public Insurance
Children Insured (any)
Standard errors are in parentheses.
nTwo-sided t-test significant at the .05 level for CSHCN versus Other Children within each year.
#Two-sided t-test significant at the .05 level for CSHCN: 2000 versus 1997.
$Two-sided t-test significant at the .05 level for Other Children: 2000 versus 1997.
Source: Author’s analysis of 1997 and 2000 National Health Interview Survey.
68HSR: Health Services Research 39:1 (February 2004)
of children without special health needs that had insurance, but not CSHCN.
This analysis suggests that it is feasible to use the revised NHIS to devise a
noncategorical approach to identify CSHCN. In this work, I replicated the
elements and logic of the CSHCN screener, which is the basis for identifying
children in the National Survey of Children with Special Health Care Needs.
Although there is overlap in the information that is collected on the National
Survey and the NHIS, the analytic capabilities of the NHIS provide an
important complement to the national survey data. As demonstrated in this
article, the NHIS allows researchers to monitor the effects of policy changes
over time on CSHCN, particularly during the late 1990s, a period of active
public policy change. The addition of the NHIS as a means to study the status
of CSHCN is particularly useful to policy researchers because the NHIS is an
ongoing survey, with a high response rate and large sample size. Although
public use files do not include state and local identifiers that may be useful for
some policy analyses, these can be accessed via the Research Data Center at
the National Center for Health Statistics.
In addition, the NHIS has a broader array of data on child health status
and family characteristics, and these capabilities will be exploited in related
research. For example, preliminary analyses have characterized patterns of
Medicaid and SCHIP eligibility for CSHCN, demonstrating that the greater
prevalence of both child and parent disability, a greater proportion of single-
parent families, and a lower income distribution results in higher rates of
public insurance eligibility for CSHCN. Ongoing research will address
explicitly the effects of expansions in public insurance eligibility on insurance
coverage for CSHCN.
Consistent with the findings of Newacheck and Taylor (1992), this
analysis demonstrates that the estimated prevalence of CSHCN is dependent
on the specification of underlying medical conditions used to identify
CSHCN. Many children with less serious conditions, such as respiratory or
skin allergies, make regular use of prescription medications and may have
of public policy, it may be more important to cast a narrower net, focusing on
children with conditions likely to be more serious and disabling. Otherwise,
Children with Special Health Care Needs in the NHIS69
the noncategorical approach to identifying CSHCN may be seen as irrelevant
It is also important to acknowledge that neither the MCHB conceptual
other studies, addresses the issue of severity of the condition or the degree of
impact on the child or family. The ability to identify children with more
substantial or multiple consequences associated with chronic illness would
provide an alternative way to narrow the focus. For example, in exploratory
and elevated or unusual service needs, representing 59 percent of CSHCN.
Finding effective ways to use multiple indicators on the CSHCN screener to
proxy severity of the condition is an important avenue for future research.
The relatively high proportion of children reported to have emotional,
behavioral, and other developmental conditions underscores the importance
of this subgroup of children. Additional research on whether and how
characteristics, insurance coverage, and access to care for these children differ
from children with primary physical conditions will be very useful to
policymakers. This information is critical to ensure that appropriate resources
are allocated to serve the needs of children with emotional, behavioral, and
The overall prevalence estimates in this analysis are nearly identical to the
MCHB estimate and somewhat higher than the QuICCC or CSHCN screener
lower when the more limited set of conditions is used. Despite the differences in
estimated prevalence of CSHCN, the effects of various demographic character-
the 1999–2000 NHIS and the estimates from the 1994 NHIS-D and, to a lesser
extent, the pretest of the CSHCN screener. Thus, the algorithm developed to
identify CSHCN on the revised NHIS likely identifies a major subset of the
children identified through the other mechanisms, even if there is not perfect
correspondence between the definitions. Moreover, the application of a
consistent definition to multiple years of the NHIS provides a useful tool for
analyzing the effects of public policy over time.
Aron, L. Y., P. J. Loprest, and C. E. Steuerle. 1996. Serving Children with Disabilities: A
Systematic Look at the Programs. Washington DC: Urban Institute Press.
70HSR: Health Services Research 39:1 (February 2004)
Bethell, C. D., D. Read, J. Neff, S. J. Blumberg, R. Stein, V. Sharp, and P. W.
Newacheck. 2002. ‘‘Comparison of the Children with Special Health Care
Needs Screener to the Questionnaire for Identifying Children with Chronic
Conditions——Revised.’’ Ambulatory Pediatrics 2 (1): 49–57.
2002. ‘‘Identifying Children with Special Health Needs: Development and
Evaluation of a Short Screening Instrument.’’ Ambulatory Pediatrics 2 (1): 38–48.
Blumberg, L. J., L. Dubay, and S. A. Norton. 2000. ‘‘Did the Medicaid Expansions for
Children Displace Private Insurance? An Analysis Using SIPP Data.’’ Journal of
Health Economics 19: 33–60.
Botman, S. L., T. F. Moore, C. L. Moriarity, and V. L. Parsons. 2000. ‘‘Design and
Estimation for the National Health Interview Survey, 1995–2004. National
Center for Health Statistics.’’ Vital Health Statistics 2 (130): 1–31.
Coverage, and Healthcare Access and Use Before and After Welfare Reform: National
Changes from 1994 to 1997. Unpublished Final Report to the Health Care
Financing Administration ( June).
Garrett,B.,A.Davidoff,andA. Yemane.2003.‘‘Effects ofMedicaidManaged Care on
Health Services Access and Utilization.’’ Health Services Research 38 (2): 575–94.
McPherson, M., P. Arango, H. Fox, C. Lauver, M. McManus, P. W. Newacheck, J. M.
with Special Health Care Needs.’’ Pediatrics 102: 137–40.
Newacheck, P., R. E. K. Stein, D. K. Walker, S. L. Gortmaker, K. Kuhlthau, and J. M.
Perrin. 1996. ‘‘Monitoring and Evaluating Managed Care for Children with
Chronic Illness and Disabilities.’’ Pediatrics 99: 952–8.
Newacheck, P. W., B. Strickland, J. P. Shonkoff, J. M. Perrin, M. McPherson, M.
McManus, C. Lauver, H. Fox, and P. Arango. 1998. ‘‘An Epidemiologic Profile
of Children with Special Health Care Needs.’’ Pediatrics 102: 117–23.
Newacheck, P., and W. Taylor. 1992. ‘‘Prevalence and Impact of Childhood Chronic
Conditions.’’ American Journal of Public Health 82: 364–71.
Stata Statistical Software, version 8. College Station, TX: Stata Corp L.P.
Stein, R. E. K., and E. J. Silver. 1999. ‘‘Operationalizing a Conceptually Based
Noncategorical Definition. A First Look at U.S. Children with Chronic
Conditions.’’ Archives of Pediatric and Adolescent Medicine 153: 68–74.
—— —— ——. 2002. ‘‘Comparing Different Definitions of Chronic Conditions in a National
Data Set.’’ Ambulatory Pediatrics 2 (1): 63–70.
Stein, R. E. K., L. E. Westbrook, and L. J. Bauman. 1997. ‘‘The Questionnaire for
Identifying Children with Chronic Conditions: A Measure Based on a
Noncategorical Approach.’’ Pediatrics 99 (4): 513–21.
Van Dyck, P. C., M. McPherson, B. B. Strickland, K. Nesseler, S. J. Blumberg, M. L.
Cynamon, and P. W. Newacheck. 2002. ‘‘The National Survey of Children with
Special Health Care Needs.’’ Ambulatory Pediatrics 2 (1): 29–37.
Children with Special Health Care Needs in the NHIS71
72 Download full-text