Unmet Need and Problems Accessing Core H

Matern Child Health J (2012) 16:1081–1091
DOI 10.1007/s10995-011-0833-6

Unmet Need and Problems Accessing Core Health Care Services
for Children with Autism Spectrum Disorder
Giuseppina Chiri • Marji Erickson Warfield

Published online: 11 June 2011
Ó Springer Science+Business Media, LLC 2011

Abstract To investigate the health care experiences of
children with autism spectrum disorder, whether they have
unmet needs, and if so, what types, and problems they
encounter accessing needed care. We address these issues
by identifying four core health care services and access
problems related to provider and system characteristics.
Using data from the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) we
compared children with autism spectrum disorder with
children with special health care needs with other emotional, developmental or behavioral problems (excluding
autism spectrum disorder) and with other children with
special health care needs. We used weighted logistic

regression to examine differences in parent reports of
unmet needs for the three different health condition groups.
Overall unmet need for each service type among CSHCN
ranged from 2.5% for routine preventive care to 15% for
mental health services. After controlling for predisposing,
enabling and need factors, some differences across health
condition groups remained. Families of children with autism spectrum disorder were in fact significantly more at
risk for having unmet specialty and therapy care needs.
Additionally, families of children with autism spectrum
disorder were more likely to report provider lack of skills
to treat the child as a barrier in obtaining therapy and

G. Chiri (&)
Lurie Institute for Disability Policy, Heller School for Social
Policy and Management, Brandeis University, MS 035, 415
South Street, Waltham, MA 02453, USA
e-mail: gchiri@brandeis.edu
M. E. Warfield
The Nathan and Toby Starr Center, Heller School for Social
Policy and Management, Brandeis University, Waltham, MA,

USA

mental health services. Disparities in unmet needs for
children with autism suggest that organizational features of
managed care programs and provider characteristics pose
barriers to accessing care.
Keywords Autism spectrum disorder
Unmet needs

Access to care
Access problems

Introduction
The Centers for Disease Control and Prevention (CDC) has
found that more children than ever before are being classified as having autism spectrum disorders (ASDs).
Research conducted by the CDC found that for the 2006
surveillance year, approximately 9 per 1,000 (or one in
every 110 children) was classified as having an ASD and
that the average prevalence of ASDs identified among
children aged 8 years increased 57% in 10 sites from the
2002 to the 2006 surveillance year [1].
This is a dramatic increase from the 1990s when autism
was believed to occur in 2.0–7.0 per 1,000 children and

from the 1980s when the rate was 0.1–0.4 per 1,000 children [2]. Assuming that the prevalence rate has remained
stable over the past two decades and that approximately 4
million children are born in the United States every year,
the CDC estimates that potentially up to 730,000 individuals between the ages of 0–21 have an ASD [3]. Although
it is still not clear whether the increase is due to a change in
how the disorders are identified or to a true increase in
prevalence, ASDs have now become the second most
common developmental disability after mental retardation
among children [4].
These data on the prevalence of autism will be reflected
in a concomitant increase in the demand for health care and

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health related services. Therefore, understanding the nature
of health care needs and the experiences this population has
in seeking health care and related services, is of paramount
importance.

Using the 2007 National Survey of Children’s Health,
Newacheck and colleagues found that about 4% of US
children have unmet medical care needs [5].
A higher occurrence of unmet health care needs among
children with special health care needs (CSHCN) has been
identified in various studies. Focusing on this subpopulation, Newacheck and colleagues found that about 12% had
at least one unmet health care need when it came to
medical care, dental care, mental health care and prescriptions, and/or eyeglasses over a period of a year [6].
Davidoff [7] reported a similar percentage; almost 14% of
the CSHCN in the 2000–2001 National Health Interview
Survey had at least one unmet need for one of five selected
health care services (general medical care, prescription
drugs, dental care, mental health services, and vision services). Finally, Warfield and Gulley [8] reported that as the
number of needed services increased, so did the number of
reports of unmet needs. For instance, among CSHCN
needing only one to two services, 7% of parents claimed at
least one unmet need, while among children needing three
to four services an average of 16% of parents reported at
least one unmet need. This percentage increased to 25
among children needing five or all six selected services.

The percentage of unmet health care needs has been
found to be even higher among children with autism. A
study by Kogan and colleagues [9] utilized the 2005–2006
National Survey of Children With Special Health Care
Needs to compare the health care experiences of CSHCN
reported by their parents to have ASD with that of CSHCN
without ASD. The analyses revealed that CSHCN who also
had ASD were appreciably more likely than CSHCN
without a reported ASD to have at least one unmet need for
health care services: 30% of parents of children with ASD
reported at least one unmet health care need, versus 12% of
parents of CSHCN without ASD. These differences
remained even after statistically controlling for sociodemographic factors, the child’s functional abilities and
health insurance coverage. The ASD group was further
compared with a group of children with other emotional,
developmental, or behavioral problems (EDB) who did not
have ASD. Relative to children with other EDB problems
who did not have ASD, parents of children with ASD were
more likely to report at least one unmet health care need
(31% vs. 25%, respectively) [9].

Children with ASD have also been reported to have
significantly greater utilization of health services in terms
of annual outpatient visits (41.5 vs. 3.3), annual physician
visits (8.0 vs. 2.2), and number of medications prescribed
annually (21.8 vs. 2.1) compared to children in general

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[10]. When comparing health care utilization of children
with and without ASD in the same health plan, Croen et al.
[11] found that children with ASD had a substantially
higher annual mean number of total clinic (5.6 vs. 2.8),
pediatric (2.3 vs. 1.6), and psychiatric outpatient visits (2.2
vs. 0.3) compared to those without ASD. Two other studies, one conducted using the 2003–2004 National Survey of
Children’s Health [12] and the other using North Dakota
Medicaid claims from 1998 through 2004 [13], echo these
findings. Research has also found that children with ASD
can experience greater difficulties accessing needed services. A study conducted by Krauss and colleagues [14]

found that over one-third of the children with autism
reported experiencing problems accessing specialty care,
compared to just one-fifth of children with mental retardation, and one-fifth of children with other types of special
health care needs.
While informative, the literature on the health care
experiences of children with autism is still scanty, and
provides only a partial picture of the health care experiences of these children. Although important characteristics
and trends in unmet health care needs, health care utilization and health care access have been identified, the specific health care services families of children with ASD
lack, and the reasons for having those unmet needs, are
unclear. Recommendations for programmatic and policy
improvements could benefit from this information.
This paper looks specifically at this gap in the literature,
focusing on the unmet health care needs of children with
ASD, as it is widely accepted that unmet need for health
care represents a critical marker of access to health care [8,
15]. While access to health care is the ‘‘foundation and
hallmark of a high performance health system,’’ [16]
having access to health care (having health insurance or a
medical home or a primary care physician) does not
guarantee that all existing health problems are appropriately addressed [6, 8, 17]. Thus, access to health care

services must be investigated further by identifying the
kinds of problems families face in their efforts to obtain
various services from different providers [8].
Our paper addresses these issues by specifying and
analyzing four core health care services (routine preventive
care, specialty care, therapy services and mental health
care) and two types of access problems (health-plan related
or provider-based) across three health condition groups; (1)
children with special health care needs who do not have
emotional, developmental or behavioral problems and also
do not have autism (other CSHCN), (2) children with
emotional, developmental or behavioral problems who do
not have autism (EDB), and (3) children with autism
(ASD). First, the paper will compare reports of unmet need
across the three groups. Secondly, it will analyze parents’
report of specific access problems experienced by the three

Matern Child Health J (2012) 16:1081–1091

groups. Finally, it will examine which individual factors, if

any, are associated with unmet needs.
We employ the Behavioral Model of Health Services
Use as a framework to understand patterns in unmet health
care needs. This model postulates that health care utilization is a function of three sets of variables: predisposing,
enabling and need [18]. In our models, predisposing variables include demographic factors such as age, gender,
language spoken at home, race and ethnicity, and marital
status; enabling factors include family income, insurance
coverage status and region of residence. Region of residence was chosen as a proxy for provider supply, a community enabling factor according to Andersen’s model.
The third component in Andersen’s model is need, which
in this case was captured by the respondent’s perception of
the child’s functional ability status. To these measures we
have added a variable indicating whether the child has
ASD, EDB or other CSHCN in order to assess if group
differences remain even after controlling for other factors.

Methods
Data used for this analysis came from the 2005–2006
National Survey of Children with Special Health Care
Needs (NS-CSHCN). The survey is sponsored by the
Maternal and Child Health Bureau (MCHB) and allows the

estimation of the prevalence of CSHCN at the state and
national level, as well as providing detailed information on
the ‘‘demographic characteristics of these children, the
types of health and support services they and their families
need, and their access to and satisfaction with the care they
receive’’ [19].
Although the MCHB definition of CSHCN includes
children who are at risk, the NS-CSHCN survey only
included children with existing special health care needs
[20]. The final sample of 40,723 was achieved by screening
363,183 children representing 191,640 households nationwide. In the end approximately 750 CSHCN from each
state and the District of Columbia were included in the
sample.
The respondents were parents or guardians who were
well informed about their child’s health and health care.
Children were classified as having special health care needs
using the CSHCN Screener, a tool which identifies children
who experience one or more of five health needs (e.g., need
for special therapies or prescription medications) that could
be the consequence of a physical, mental, behavioral or

other type of health condition that has lasted or is expected
to last at least 12 months. If more than one child in the
household were identified as having special health care
needs, one was randomly selected to be the subject of a
detailed interview [22].

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The survey identified children as having an autism
spectrum disorder if the respondent answered affirmatively
to the question ‘‘To the best of your knowledge, does your
child currently have autism or autism spectrum disorder,
that is, ASD?’’
CSHCN were classified as having chronic emotional,
developmental, or behavioral problems if the respondent
answered affirmatively to two questions from the CSHCN
Screener: ‘‘Does your child have any kind of emotional,
developmental, or behavioral problem for which he/she
needs treatment or counseling?’’ and ‘‘Has your child’s
emotional, developmental, or behavioral problem lasted or
is it expected to last 12 months or longer?’’
We restricted our sample to children ages 3 and older,
because research has shown that although possible, early
diagnosis of autism is laden with problems, whereas an
accurate diagnosis can be made when the child is 3 or older
[21]. This led to a final sample size of 38,373 children.
The total number of children ages 3–17 years reported
to have ASD is 2,088. This corresponds to approximately
535,000 children nationally with both SHCN and ASD.
The total number of children ages 3–17 years reported to
have EDB but not ASD is 9,534 (about 2,333,235 nationally). A total of 26,751 children ages 3–17 years had special health care needs other than ASD or EDB (close to
6,671,714 nationally).
Measures
Unmet Health Care Needs
Of the 15 health care services the NS-CSHCN inquires
about, we selected four core health care services for analysis: routine preventive care, specialist care, physical,
occupational or speech therapy and mental health care or
counseling. The unmet need for these selected medical
services was assessed by using survey items asking whether a particular service that the respondent deemed necessary was received in the previous year. Those who
needed a service but did not receive it were considered to
have an unmet need.
Access Problems
The NS-CSHCN asks about the nature of access problems
for each of the core health care service areas thus making it
possible to examine whether different patterns across service areas and health condition groups exist. The ten
questions, asked in a yes/no format, reference a set of
problems parents may have encountered when attempting
to obtain any one of the selected core medical services in
the previous 12 months. We grouped the ten access problems into health plan or provider based. Specifically, some

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survey items underscored problems associated with health
plan policies including getting referrals for services, general health plan problems and finding a doctor who accepts
the insurance plan. Other survey items referenced providerbased issues such as lack of skilled providers, shortage of
providers that can be easily accessed, difficulties getting
appointments, and dissatisfaction with the provider.
In Tables 3 and 4, we report the percentage in each of
the three groups who experienced each of the ten specific
problems.
Data Analysis
The NS-CSHCN data were obtained using a complex
sample design that included clustering of children within
households and stratification of households within states.
To produce estimates that are representative of children
nationally and within each state sampling weights were
used. These sampling weights account for the unequal
probability of selection of each household and child, and
they include adjustments for multiple-telephone households, unit nonresponse, and noncoverage of nontelephone
households, as well as adjustments to known population
Table 1 Selected child
characteristics and insurance
coverage status by health
condition group

control estimates [22]. STATA [23] statistical software was
used to obtain accurate variance estimates in all the analyses we performed.

Results
Selected characteristics of the study population are
described in Table 1 for each of the health condition
groups and for the overall sample.
Although boys represent the majority of all CSHCN
(almost 60%), they are over represented in the ASD category (79%). While the majority of CSHCN were white
non-Hispanic (65.7%), 11.5% were Hispanic, and 16.3%
black non-Hispanic. The racial distribution is similar across
the three health condition groups.
Just under 60% of respondents reported that their child
had private health insurance only and almost 30% reported
having public insurance only. A small fraction reported
having both public and private insurance (7.3%), other
comprehensive insurance (2%), or being uninsured at the
time of survey (3.5%). Children with ASD are more likely
than the other two groups to have both public and private
Other
CSHCN (%)

CSHCN with
other EDB (%)

CSHCN with
ASD (%)

All children with
SHCN (%)

Age
3–5

17.8

7.3

18.9

15.3

6–11
12–17

39.3
43.0

41.1
51.6

42.1
39.1

39.9
44.9

Gender
Male

56.8

62.4

79.0

59.4

Female

43.2

37.6

21.0

40.6

Race
Hispanic

11.2

12.4

12.0

11.5

White, non-Hispanic

66.5

62.8

67.8

65.7

Black, non-Hispanic

15.8

18.1

14.2

16.3

Multi racial, non-Hispanic

3.5

4.1

2.9

3.6

Other

3.0

2.5

3.1

2.9

Private only

65.8

44.8

47.5

59.6

Public only

23.3

38.9

31.5

27.6

5.7

10.1

15.2

7.3

Insurance

Both public and private
Other comprehensive ins

2.1

1.9

2.5

2.0

3.2
92.0

4.4
88.8

3.4
91.5

3.5
91.2

0–99% FPL

16.8

26.4

19.9

19.3

100–199% FPL

20.3

25.8

24.7

21.9

Uninsured
Insured continuously all year
Income

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200–399% FPL

31.1

26.3

29.2

29.8

400% FPL or greater

31.8

21.5

26.2

29.0

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insurance (15.2%), however compared to other CSHCN
they are less likely to carry private insurance only (47.5%
vs. 65.8%) but more likely to have public insurance only
(31.5% vs. 23.3%).
In order to address our research questions, we conducted
bivariate and logistic regression analyses. First, the percentage of respondents reporting unmet health care needs
was calculated for each of the four core health care services
and for each of the three health condition groups. Second,
the percentage of respondents reporting access problems
was computed for each group. Bivariate analyses provide
group-specific prevalence rates and explore unadjusted
associations of the four core health care services and for
each of the three health condition groups. Lastly, four
separate logistic regression models were analyzed to
identify differential predictors of the probability of experiencing each of the four unmet health care needs. All
estimates are weighted to reflect population characteristics
and to be nationally representative.

Research Question #2 How does parent report of specific
access problems vary by service type and health condition
group (other CSHCN vs. EDB vs. ASD)?
Tables 3 and 4 show specific access problems parents
encountered as they tried to obtain care for their children.
Given the large number of comparisons performed, we
have adjusted the statistical significance to P \ 0.001 in
order to reduce Type I errors [24]. As the table shows, there
were only a few statistically significant differences among
the groups with respect to experiencing problems accessing
care. Families of children with ASD were more likely to
report provider inability to treat the child as a barrier in
obtaining therapy and mental health services (5.8 and
13.6%, respectively). Children with ASD also experienced
greater impediments than the other health condition groups
in getting routine preventive care due to having difficulties
obtaining referrals (7.0%).
How do predisposing characterisand need predict the likelihood of
need? After controlling for these
across the three health condition

Research Question #1 How does parent report of unmet
need vary by service type and health condition group (other
CSHCN vs. EDB vs. ASD)?

Research Question #3
tics, enabling resources
experiencing an unmet
factors, do differences
groups still exist?

Overall unmet need for each service type was relatively
low among CSHCN, ranging from 2.5% for routine preventive care to 15% for mental health services. Despite
this, significant differences in reports of unmet needs are
found by health condition group for three of the four
selected core health care services (Table 2). Parents of
children with ASD were more likely to report an unmet
need than parents of children with other SHCN except for
mental health where they reported similar levels of unmet
needs. Parents of children with EDB were also always
more likely than parents of children with other SHCN to
report unmet needs on all the measures except for mental
health. Parents of children with EDB and ASD reported
similar levels of unmet health care needs on all the core
health care services.

Four separate logistic regression models, one for each of
the potential unmet need, were analyzed to address this
question (Table 5). The dependent variables were coded
one if the respondent reported not having received the
needed service, and zero if the respondent reported having
received the needed service.
The logistic regression models revealed an important set
of findings. First, the predisposing factors of age, gender,
and race were not significant predictors of experiencing
unmet needs in any category. Being a single mother predicted more unmet routine preventive and mental health
care needs. English as a primary language in the home also
predicted more unmet mental health care needs.
Second, each enabling factor was a significant predictor
of different types of unmet need. Poverty and being

Table 2 Differences in reports of unmet needs for services by health condition group
Routine
preventive care
% (95% CI)

Chi-square

Specialty care
% (95% CI)

Other CSHCN

2.0 (1.7, 2.3)

82.7**

CSHCN with
other EDB

3.7 (3.0, 4.5)

8.0 (6.9, 9.3)

15.4 (13.4, 17.6)

15.5 (14.1, 17.0)

CSHCN with
ASD

4.2 (2.9, 6.0)

10.1 (7.1, 14.2)

17.9 (15.0, 21.3)

17.6 (13.3, 22.8)

4.2 (3.6, 4.8)

Chi-square

Therapy
% (95% CI)

Chi-square

Mental health
% (95% CI)

Chi-square

162.2**

11.5 (9.6, 13.6)

47.7**

12.8 (10.6, 15.5)

16.6

Chi-square test of the null hypothesis of no group differences
** P \ 0.01

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Table 3 Prevalence of health plan-based access problems by service and health condition group (% and 95% CI)
Cost too much

No insurance

Health plan problem

No referral

Provider does not
accept insurance

Other CSHCN

31.7 (24.2, 40.2)

38.3 (30.1, 47.3)

12.6 (8.5, 18.4)

0.2 (0.0, 1.3)

2.4 (1.0, 5.4)

CSHCN with other EDB

30.9 (22.4, 40.9)

26.9 (18.6, 37.2)

19.1 (10.5, 32.3)

0.1 (0.0, 0.5)

4.2 (1.5, 10.8)

CSHCN with ASD

28.4 (14.9, 47.2)

10.4 (4.3, 23.1)

13.4 (6.2, 27.1)

7.0*** (2.3, 19.2)

5.5 (1.5, 17.9)

Other CSHCN

22.4 (16.5, 29.6)

17.0 (12.3, 22.9)

20.1 (14.3, 27.5)

4.0 (2.0, 7.8)

4.1 (2.4, 7.0)

CSHCN with other EDB
CSHCN with ASD

22.0 (16.4, 28.7)
31.0 (17.7, 48.3)

16.1 (11.0, 22.9)
10.4 (4.8, 21.3)

14.3 (9.9, 20.3)
19.6 (10.0, 34.8)

2.5 (1.2, 5.1)
6.8 (1.9, 21.4)

8.0 (4.9, 12.9)
17.0 (6.8, 36.2)

Other CSHCN

11.1 (7.1, 17.0)

9.4 (5.4, 15.7)

28.8 (19.3, 40.6)

2.0 (0.8, 4.7)

1.5 (0.7, 3.4)

CSHCN with other EDB

20.5 (15.2, 27.1)

6.0 (3.7, 9.8)

18.6 (13.1, 25.8)

2.6 (0.9, 7.2)

4.9 (2.2, 10.5)

CSHCN with ASD

17.3 (11.7, 24.7)

6.0 (2.8, 12.4)

16.0 (10.9, 22.8)

1.2 (0.5, 3.2)

6.7 (3.3, 12.9)

Other CSHCN

28.8 (20.4, 39.0)

14.1 (8.2, 23.2)

10.0 (5.4, 17.6)

0.8 (0.3, 2.1)

7.4 (3.5, 15.3)

CSHCN with other EDB

20.8 (16.4, 25.9)

13.4 (9.9, 18.1)

15.2 (11.2, 20.2)

1.3 (0.7, 2.5)

6.0 (4.2, 8.5)

CSHCN with ASD

18.0 (10.7, 28.6)

6.7 (3.3, 13.1)

11.5 (6.1, 20.8)

4.1 (1.1, 14.6)

16.6 (7.8, 31.9)

Routine preventive care

Specialty care

Therapy

Mental health

Chi-square test of the null hypothesis of no group differences
*** P \ 0.001
Table 4 Prevalence of provider-based access problems by service and health condition group (% and 95% CI)
Not available in
area/transportation

Inconvenient
times

Provider did not
know how to treat

Dissatisfaction
with provider

Did not know
where to go

Routine preventive care
Other CSHCN

5.5 (2.3, 12.5)

8.6 (4.5, 15.7)

2.0 (0.9, 4.4)

5.9 (2.9, 11.7)

1.5 (0.4, 5.9)

CSHCN with other EDB
CSHCN with ASD

7.5 (4.0, 13.8)
3.7 (0.7, 17.6)

15.4 (9.3, 24.3)
15.0 (6.3, 31.7)

4.7 (2.2, 9.8)
15.2 (5.2, 36.8)

8.6 (3.7, 19.0)
7.9 (3.0, 19.1)

2.7 (1.0, 7.3)
14.2 (3.7, 41.5)
5.6 (2.1, 14.1)

Specialty care
Other CSHCN

7.8 (5.3, 11.4)

12.1 (8.5, 17.2)

6.5 (4.3, 9.7)

5.9 (3.7, 9.2)

CSHCN with other EDB

14.7 (9.4, 22.2)

13.1 (8.5, 19.8)

12.8 (7.3, 21.4)

6.3 (4.0, 9.9)

4.8 (2.7, 8.3)

CSHCN with ASD

22.3 (11.8, 38.1)

9.8 (4.6, 19.5)

15.6 (7.4, 30.1)

20.7 (6.0, 51.9)

13.9 (5.8, 29.7)

Therapy
Other CSHCN

7.6 (4.4, 12.8)

5.3 (2.9, 9.4)

1.2 (0.5, 2.7)

12.2 (5.0, 26.8)

2.6 (1.2, 5.8)

CSHCN with other EDB

12.7 (8.8, 18.1)

5.2 (2.9, 9.2)

1.8 (0.9, 3.3)

3.9 (2.0, 7.4)

3.2 (1.3, 7.3)

CSHCN with ASD

19.1 (12.6, 28.1)

5.9 (3.0, 11.2)

5.2 (1.8, 14.1)

5.4 (2.8, 10.3)

Other CSHCN

8.4 (4.8, 14.1)

7.4 (3.9, 13.7)

3.8 (1.6, 8.9)

7.9 (4.0, 15.1)

10.3 (4.3, 22.7)

CSHCN with other EDB

9.7 (6.9, 13.5)

7.7 (5.5, 10.7)

3.9 (2.6, 5.7)

9.1 (7.0, 11.7)

4.8 (3.3, 7.0)

16.8 (8.4, 30.8)

5.7 (2.4, 13.0)

14.2 (3.9, 40.2)

12.8 (5.3, 27.9)

5.8*** (3.0, 11.1)

Mental health

CSHCN with ASD

13.6*** (7.2, 24.0)

Chi-square test of the null hypothesis of no group differences
*** P \ 0.001

uninsured, two markers of social vulnerability, are significantly associated with the likelihood of having an unmet
need on several of the selected core health care services.
Type of insurance is by and large not crucial in determining
whether or not a child will lack health care, with the
exception of public health insurance which lowered the risk

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of having unmet mental health care needs. South and West
geographic regions are positively associated with increased
likelihood of having unmet routine care needs and mental
health needs (for the South region only). This is a potential
indication that health system resources are not evenly
distributed throughout the country.

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Table 5 Adjusted ORs (and 95% CI) for factors associated with measures of unmet needs
Variable

Unmet routine
preventive care needs

Unmet specialty
care needs

Unmet therapy
care needs

Unmet mental health
care needs

CSHCN with ASD

1.50 (0.89–1.74)

2.01 (1.21–3.35)

1.41 (1.05–1.90)

1.42 (0.92–2.19)

CSHCN with other EDB

1.25 (0.92–2.46)

1.38 (1.07–1.78)

1.20 (0.92–1.56)

1.20 (0.93–1.55)

Other CSHCN

1.00

1.00

1.00

1.00

3–5

0.83 (0.56–1.22)

0.69 (0.49–0.99)

1.23 (0.91–1.65)

1.14 (0.77–1.71)

6–11

0.82 (0.60–1.12)

0.84 (0.65–1.08)

0.87 (0.66–1.16)

0.78 (0.6–0.97)

12?

1.00

1.00

1.00

1.00

Male

1.00

1.00

1.00

1.00

Female

0.87 (0.65–1.17)

0.95 (0.75–1.20)

1.33 (1.03–1.73)

0.96 (0.77–1.19)

Non-hispanic, white

1.00

1.00

1.00

1.00

Hispanic, any race

0.95 (0.54–1.68)

1.01 (0.68–1.51)

1.30 (0.87–1.94)

1.15 (0.81–1.64)

Non-hispanic, black

1.01 (0.76–1.52)

0.96 (0.65–1.41)

0.98 (0.68–1.41)

0.86 (0.61–1.20)

Health condition group

Predisposing
Age

Gender

Hispanic origin and race

Non-hispanic, multiracial

1.20 (0.66–2.17)

1.33 (0.83–2.12)

0.95 (0.59–1.54)

1.33 (0.87–2.03)

Non-hispanic, other

1.48 (0.72–3.00)

1.23 (0.64–2.36)

1.48 (0.61–3.59)

1.28 (0.80–2.06)

Primary language spoken at home
Non-english

1.00

1.00

1.00

1.00

English

0.70 (0.35–1.37)

1.17 (0.67–2.03)

1.03 (0.58–1.83)

1.79 (1.03–3.12)

Family structure
2 parent (biological/adoptive)

1.00

1.00

1.00

1.00

2 parent (step)

0.97 (0.63–1.49)

1.09 (0.75–1.57)

0.69 (0.45–1.04)

1.08 (0.77–1.50)

Single mother

1.39 (1.02–1.90)

1.10 (0.83–1.46)

1.03 (0.77–1.37)

1.46 (1.14–1.86)

Other

1.27 (0.71–2.29)

1.31 (0.77–2.22)

0.86 (0.54–1.37)

1.27 (0.84–1.91)

\100

5.57 (3.12–9.97)

4.85 (3.15–7.47)

1.21 (0.80–1.84)

3.22 (2.16–4.80)

100 to \200

4.08 (2.56–6.50)

3.67 (2.57–5.24)

1.13 (0.79–1.63)

3.64 (2.55–5.18)

200 to \400

1.60 (1.01–2.54)

2.37 (1.68–3.33)

1.09 (0.78–1.54)

1.92 (1.39–2.66)

C400

1.00

1.00

1.00

1.00

Enabling
Poverty status, % FPL

Type of insurance
Private

1.00

1.00

1.00

1.00

Public

0.73 (0.05–1.17)

0.78 (0.57–1.08)

0.76 (0.55–1.05)

0.64 (0.48–0.86)

Both private and public

0.87 (0.46–1.64)

0.78 (0.49–1.27)

0.82 (0.58–1.16)

0.84 (0.56–1.26)

Insured (type unknown)

0.62 (0.20–1.89)

0.47 (0.24–0.93)

0.53 (0.24–1.21)

0.65 (0.32–1.36)

Uninsured

8.80 (5.78–13.40)

4.96 (3.38–7.27)

2.03 (1.25–3.31)

3.55 (2.42–5.21)

Geographic region
Northeast

1.00

1.00

1.00

1.00

Midwest

1.29 (0.80–2.09)

0.67 (0.47–0.95)

0.94 (0.68–1.29)

0.96 (0.70–1.32)

South

1.60 (1.02–2.53)

0.79 (0.56–1.09)

1.17 (0.87–1.59)

1.16 (0.85–1.57)

West

2.20 (1.38–3.51)

1.04 (0.72–1.52)

1.32 (0.87–2.00)

1.67 (1.17–2.37)

Need
Functional ability
Affected usually or always

2.64 (1.74–3.99)

2.45 (1.71–3.51)

2.55 (1.66–3.92)

1.94 (1.35–2.80)

Affected some or very little

1.48 (1.02–2.16)

1.81 (1.31–2.51)

1.35 (0.84–2.19)

1.44 (1.01–2.05)

Never affected

1.00

1.00

1.00

1.00

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Third, parents of children whose functional ability is
always or usually affected by their condition are more
likely to report having unmet needs on all of the selected
core health care services.
Finally, after controlling for all identified predisposing,
enabling and need factors, some differences across health
condition groups remained. Families of children with ASD
are in fact significantly more at risk for having unmet
specialty and therapy care needs. However there were no
group differences in the likelihood of having unmet routine
or mental health care needs.

Discussion
This study presents the first set of estimates of the prevalence of reported unmet need for four core health care
services for children with ASD. Understanding the nature
and extent of health disparities is the first step toward the
creation of policies aimed at narrowing those disparities
[25].
The analysis generated four key findings.
1

Children with ASD are more likely than the comparison groups to experience unmet needs and access
problems.

Our study showed important disparities in unmet needs
by health condition group. The multivariate analysis
revealed that significant differences in unmet need for
services remained among these groups even after controlling for potentially confounding relationships. Following
Andersen’s model of health care utilization, we controlled
for factors that have been shown to affect health care utilization in order to isolate the effect of having an ASD. All
other things being equal, children with ASD were significantly more at risk of not receiving needed specialty and
therapy care. In terms of unmet specialty care needs, their
experience is comparable with that of children with EDB
problems, but it appears to be unique in terms of therapy
needs.
Some have attributed the large occurrence of unmet
needs to the organizational features of managed care programs [7, 26–28]. In the past decade, children’s health
insurance has gradually shifted from private to public
coverage, and concurrently managed care has become the
leading financing and delivery mechanism for both private
and public plans [28]. From 1991 to 2004 the proportion of
the Medicaid population enrolled in managed care has in
fact risen from 9.5 to 60.7% [29]. While managed care has
many features that can promote excellent care, it also has
the potential to limit quality, encourage inadequate services, or diminish the breadth of services provided. Furthermore, regular use of ‘‘carve-out’’ measures to manage

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Matern Child Health J (2012) 16:1081–1091

costs—many state Medicaid programs have separate contracts for behavioral health services, for example—can
render care coordination between pediatricians and other
health care professionals more difficult [30]. Thus, children
with ASD or EDB face an important challenge in accessing
all needed services in a largely managed care environment.
Families of children with ASD struggled particularly
with finding providers with the necessary skills to deliver
therapy and mental health services to their children. This
finding is not surprising if one considers that a survey of a
random sample of US physicians in both primary care and
specialty fields revealed that most physicians believed their
medical training to treat chronic conditions was unsatisfactory. They lamented that their clinical training was not
adequate to diagnose and treat complex conditions and thus
felt ill-equipped to meet the demand of their current
practice [31]. This suggests that changes in medical curricula could improve physicians’ competency to treat
children with chronic, complex conditions [31]. Research
has also shown that provider-based access problems, such
as finding experienced providers, increase greatly when
children have a behavioral condition, autism or their health
care needs are not stable, and that these problems are not
correlated with insurance status [8, 14]. It is therefore
likely that increasing insurance coverage and financing will
not be sufficient to address this specific issue and that
combined financial and system-related approaches might
be more successful [8, 15, 32].
2

Unmet service need was found to vary by service type.

Our analysis shows that nationally 77.3 and 51.0% of all
CSHCN needed routine and specialty care in the 12 months
prior to the survey. A smaller but still sizeable percentage
also reported needing therapy or mental health care (22.5 and
26.6%, respectively) for the same time period. Parents of
children with ASD, however, compared to parents of children with other SHCN and children with EDB, expressed
significantly higher needs for specialty care (64.5% vs.
51.0%, v2 = 315.3, P \ 0.01) and for therapy services
(75.1% vs. 22.5%, v2 = 4,115.3, P \ 0.01).
Although less frequently needed among all children with
SHCN, therapy or mental health care services were the two
most commonly reported unmet needs. In fact, about 14
and 15% of families claimed not receiving all needed
therapy and mental health care compared to about 3 and
6% who reported unmet need in routine and specialty care.
The pattern of unmet core health service needs found in our
study is similar to what has been reported in other analyses
that examined this topic in samples of CSHCN with or
without ASD [7, 8, 33]. The higher prevalence of unmet
mental health care and therapy needs reflects the fact that
these services are offered in limited amounts or with
restrictions and copayments [34, 35]. It also reflects the fact

Matern Child Health J (2012) 16:1081–1091

that children are more likely than adults to be affected by
coverage that limits the number of days or visits as they are
more likely to exceed such limits [36]. While health
insurance in general makes children’s behavioral health
care more affordable, benefit restrictions or diagnostic
exclusions can mean that some children become in effect
uninsured if they require services more complex or intense
than those covered under the plan, or if they need treatment
for conditions that are not included in the plan [37].
In recent years several states have adopted laws
requiring insurers to provide coverage for the treatment of
autism. Even though most mandates include a benefit cap
or some other kind of limitation, these policies are likely to
still have a positive impact especially in times of shrinking
public resources as they will provide children and families
with additional coverage and access to treatment.
Finally, we also found lower reports unmet mental
health needs among non-English speaking respondents.
Cultural differences about what constitutes a medical and
mental disorder and the propensity among some nonEnglish speaking groups to underreport lack of care could
explain this finding [38, 39]. Additionally, our analyses
revealed that race/ethnicity was not a contributing factor in
explaining unmet health care needs. This could be attributed to the ‘‘healthy-immigrant effect’’, some other cultural
factor or to the way in which respondents with different
ethnic backgrounds are screened into the NS-CSHCN
sample [40, 41].
3

The prevalence of specific access problems varied by
service type.

Although we found no statistically significant differences among health condition groups for the health planbased access measures, our analyses showed that a substantial percentage of all parents attributed having unmet
needs to high cost, lack of insurance coverage or more
general health plan problems. Obtaining referrals or having
providers who did not accept the family’s insurance were
perceived as less pervasive problems. These data indicate
the presence of systemic problems. At the system level, the
first barrier to overcome is access to health insurance.
During the past decade, both federal and state governments
have made efforts to expand health care coverage for all
children, including those with special health care needs.
The State Children’s Health Insurance Program (SCHIP)
and other federal and state-led efforts have created
unprecedented opportunities for outreach and enrollment to
ensure that all children have access to the care they need to
be healthy [42]. Overcoming obstacles to insurance coverage is important because data show that in states where
more people are insured, adults and children are more
likely to have a medical home and receive recommended
preventive and chronic care [16].

1089

4

The prevalence of unmet needs is greater for children
whose functional ability is always or often affected.

Within the larger group of children with special health
care needs, there appears to be a subgroup of children with
severe limitations in activities. Even after controlling for
insurance status and other relevant predictors of access to
care, parents of these children are more likely to report
unmet needs on all four health care outcomes compared
with similar reports for CSHCN with fewer limitations. In
line with our finding of greater difficulties accessing care,
other research has also found consistent patterns of disparities whereby CSHCN with greater functional limitations have a higher risk of having delayed or forgone care
[43], experience greater adverse impact on the family’s
finances, time, and employment [44], and are less likely to
have a medical home and be in greater need of care
coordination [42]. Further research to understand why
these children experience greater difficulties can help
inform future efforts to insure a more equitable distribution
of health care services.

Limitations
This study is not without limitation. First of all, the NSCSHCN relied on parents’ reports of an ASD diagnosis
rather than medical record data. However, there is some
evidence that parents can reliably report such a diagnosis
[45]. Secondly, the survey relied on parents accurately
assessing their child’s unmet needs. Again, this can be
subject to recognition and recall errors.
Conclusions
Despite these limitations, this study has expanded what is
currently known about unmet health care needs and health
care access problems for children with ASD and their
families by examining four core health care service areas
and specific types of access problems.

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