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Autism. Author manuscript; available in PMC 2016 June 15.
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Published in final edited form as:

Autism. 2014 October ; 18(7): 815–826. doi:10.1177/1362361313512902.

Access to services, quality of care, and family impact for

children with autism, other developmental disabilities, and other
mental health conditions
Rini Vohra, Suresh Madhavan, Usha Sambamoorthi, and Claire St Peter
West Virginia University, USA
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Abstract
This cross-sectional study examined perceived access to services, quality of care, and family
impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as
compared to caregivers of children with other developmental disabilities and other mental health
conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was
utilized to examine the association between child’s special needs condition and three outcomes (N
= 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source
of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of
shared decision making, and no routine screening), and family impact (financial, employment, and
time-related burden). Multivariate logistic regressions were performed to compare caregivers of
children with autism spectrum disorders to caregivers of children with developmental disabilities
(cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health
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conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or

depression), or both developmental disabilities and mental health conditions. Caregivers of
children with autism spectrum disorders were significantly more likely to report difficulty using
services, lack of source of care, inadequate insurance coverage, lack of shared decision making
and care coordination, and adverse family impact as compared to caregivers of children with
developmental disabilities, mental health conditions, or both.

Keywords
Access to services; autism; autism spectrum disorder health care; burden of autism; developmental
disabilities; family impact; mental health condition; quality of care
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Introduction
Prevalence of autism spectrum disorders (ASDs) has risen in the past decade by 78%
(Centers for Disease Control and Prevention (CDC), 2012a), and currently 1 in 88 children
in the United States has ASDs. ASD is associated with restrictive, repetitive, and stereotyped
patterns of behavior along with functional and social impairments (American Psychiatric

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Corresponding author: Rini Vohra, Department of Pharmaceutical Systems and Policy, School of Pharmacy, West Virginia
University, P.O. BOX 9510, Morgantown, WV 26505-9510, USA. [email protected].
 Vohra et al. Page 2

Association, 2000). ASD is also associated with extensive physical and neurological
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comorbidities (Joshi et al., 2010; Kohane et al., 2012; Levy et al., 2010) such as epilepsy,
schizophrenia, cranial anomalies, inflammatory bowel disease, sleep disorders, and muscular
dystrophy (Kohane et al., 2012; Maski et al., 2011). Some developmental disabilities (DDs)
are particularly highly comorbid with ASDs. These specifically include conditions such as
cerebral palsy, intellectual disability (ID)/intellectual developmental disorders (IDD), Down
syndrome, or developmental delay (CDC, 2012c). The prevalence of comorbid DDs in
children with ASDs can be as high as 90% as compared to 82% for children with ID/IDD,
76% for children with developmental delay, and 51% for children with cerebral palsy
(Boulet et al., 2009). Similarly, mental health conditions (MHCs) such as attention deficit
hyperactivity disorder (ADHD; Furman, 2008), anxiety, behavioral/conduct problems, or
depression have also been found to cooccur with ASDs (Stewart et al., 2006; White et al.,
2009). Management of such complex and heterogeneous sets of DDs and MHCs in children
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with ASDs requires provision of services by multiple health-care professionals which may
be challenging for the existing DD centers or clinics, a fact supported by many observational
studies (Bitsko et al., 2009; Boulet et al., 2009; Krauss et al., 2003; Liptak et al., 2006a).

Although symptoms of cognitive delay and socio-behavioral issues are common in children
with ASDs, DDs, and MHCs, children with ASD are unique because of the developmental
course of ASDs, their treatment, and management (Volkmar et al., 1999). Caregivers of
children with ASDs may face different challenges due to a number of reasons: (1) the
complexity of the disorder itself, which requires intensive pharmaco-therapeutic and
behavioral interventions needing coordination among multiple educational and health-care
providers (Volkmar et al., 1999); (2) extensive developmental and physical comorbidities
(Boulet et al., 2009; Kohane et al., 2012; Levy et al., 2010) that need greater medication
management and attention by the caregiver as well as the health-care providers; and (3) lack
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of “gold standard” or evidence base for wide array of pharmacological, biomedical,

alternative treatment, and behavioral therapies used by caregivers of children with ASDs
(Warren et al., 2011). In addition, the substantial out-of-pocket direct health-care costs and
other indirect costs incurred by families of children with ASD also pose a significant
financial burden on these families (CDC, 2012b; Kogan et al., 2008).

The complexity of ASD and its impact on the family is evident in the reports of caregivers of
children with ASDs; these caregivers have reported greater unmet needs (Chiri and Warfield,
2012; Siklos and Kerns, 2006), issues with access to services (Krauss et al., 2003; Ruble et
al., 2005), and dissatisfaction with the quality of care provided (Montes et al., 2009; Spann
et al., 2003) as compared to caregivers of children without ASDs. When compared to
caregivers of children with DDs, some studies have also observed greater unmet needs
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(Cadman et al., 2012), problem accessing services (Boulet et al., 2009; Krauss et al., 2003),
and poor quality of care (Liptak et al., 2006b) among caregivers of children with ASDs.
Primary care physician referral to specialty providers and satisfaction with primary care
physician services are also impacted by presence of ASDs. Ming et al. (2011) found that
fewer children with ASDs received referrals for specialists from their primary care
physicians than children with other neurologic disorders. Liptak et al. (2006a) examined
perceptions of parents of children with DDs including ASDs about satisfaction with primary
health care. They found that families of children with ASDs expressed greater dissatisfaction

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with the communication and coordination of care among primary care physicians as
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compared to families of children with other DDs. Difficulties in accessing services,

dissatisfaction with the service, and poor quality of health care may also lead to negative
outlook. For example, families of children with ASDs were also found to be more negative
in their comments about the services and were more likely to express unmet needs as
compared to families of children with other DDs (Liptak et al., 2006a).

Even among groups of children with special health-care needs (CSHCN), caregivers of
children with ASDs report greater unmet health-care needs. Using 2005–2006 National
Survey of Children with Special Health Care Needs (NS-CSHCN) data, Kogan et al. (2008)
compared the caregivers’ health-care experiences and family impact for children with ASDs
to caregivers of other CSHCN and caregivers of children with emotional, developmental,
and behavioral problems (EDBPs) to caregivers of other CSHCN. This study found that
caregivers of children with ASDs and EDBPs are more likely to report poor experiences in
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accessing services, receiving family-centered care, and an adverse family impact as

compared to caregivers of other CSHCN. Even though the study established a significant
association between caregivers’ negative experiences and child’s special needs conditions, it
lacked a comprehensive comparison between the ASD and EDBP groups. In addition, the
study also did not compare issues reported by caregivers of children with ASDs to those
reported by caregivers of children with multiple comorbid conditions such as both DDs/
MHCs.

This study attempts to fill the knowledge gap by examining issues with access to services,
quality of care, and family impact reported by caregivers of children with ASDs as
compared to caregivers of children with DDs, MHCs, or both DDs/MHCs. Identifying
health-care disparities across caregivers of children with ASDs and other special needs
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conditions such as DDs and MHCs will indicate differences in perceptions of caregiver
needs and highlight the variations in the extent and type of health-care needs of these
children. Such differences, if they do exist, will help inform the health-care providers and
policy makers in designing programs that may address core deficits in areas of services
provision, care coordination, and shared decision making, leading to improvement in family
outcomes for caregivers of children with ASDs, DDs, and MHCs. Due to the complex nature
of ASDs, extensive comorbidity burden and health-care needs, and costs associated with the
condition (CDC, 2012b), provision of care under the umbrella of DD networks may be
inadequate. It is expected that caregivers of children with ASDs will be more likely to have
poor access, poor quality of care, and adverse family impact, as compared to caregivers of
children with DDs and MHCs.
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Methods
Data source
This study uses cross-sectional data from 2009–2010 NS-CSHCN, a computer-assisted
random digit dial telephone survey with a complex multistage design representative of the
US civilian noninstitutionalized population with children aged 0–17 years. The NS-CSHCN
provides child- and household-level data on children with and without SHCN (Maternal and
Child Health Bureau, Data Resource Center for Child & Adolescent Health, 2011). A total

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of 372,698 children were screened for SHCN in the 50 states and District of Columbia (DC)
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from 196,159 households. The analyses reported here are based on sample of children who
were identified as CSHCN through the survey’s CSHCN screener (N = 40,242).

Study population
All special needs children aged 3–17 years with a caregiver-reported current diagnosis of
ASDs, DDs, MHCs, or both DDs/MHCs formed the sampled population. The final
analytical sampled population (hereafter referred to as sample) was 18,136.

Measures
Key independent variable
Child’s special needs condition (ASD, DD, and MHC): ASD was identified from
caregiver-reported confirmation to the question “Does the child currently have autism,
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Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder?”

Children with DDs consisted of those who had cerebral palsy, Down syndrome,
developmental delay, or ID/IDD. Children with MHCs consisted of those who had ADHD,
anxiety, behavioral/conduct problems, or depression. Based on ASD, DD, and MHC, we
adapted the following hierarchical classification of special needs conditions: (1) ASD, (2)
DD (without ASD or MHC), (3) MHC (without ASD or DD), and (4) both DD/MHC
(without ASD). As evident from the classification, the ASD group included children with
ASD alone (n = 372), ASD with DD (n = 694), MHC (n = 739), and both DD/MHC (n =
1220).

Dependent variables
Access to services: Access to services was assessed using four measures: difficulty using
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services, difficulty getting referrals, lack of source of care, and inadequacy of health
insurance coverage. For this study, the services represent those offered by primary care
providers, schools, hospital systems, other clinics/health centers, and any other relevant
institution. Difficulty using services was measured as a binary variable using yes/no
responses to the question “During the past year, have you had any difficulties using or delay
in services due to lack of eligibility, availability of services, cost issues, problems getting
information, getting appointments, or any other reasons?” Difficulty getting referrals was
measured as a three-category variable and was derived from two questions “Did you need a
referral?” and “Among those who needed a referral, whether getting referrals was a big
problem, a small problem, or not a problem?” The three categories were as follows: (1) did
not need a referral, (2) big/small problem, and (3) no problem. Lack of source of care was a
binary indicator derived from yes/no responses to the question “Does the child lack a
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personal doctor/place for routine/sick care or did not receive all specialty care, when
needed?” Inadequacy of health insurance was derived from the questions “Whether the child
has a health insurance?” and “Does the insurance allow the child to see a provider or provide
benefits that meet the child’s needs?” The variable was grouped into two categories: (1) no
insurance/never/sometimes and (2) have insurance/usually/always.

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Quality of care: The quality of care was assessed with three binary measures: lack of shared
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decision making, lack of care coordination, and lack of routine screening or well-child visits.
Lack of shared decision making was derived from the question “Did the health-care provider
discuss, encourage/make it easy to ask questions, or respect your treatment choices?” and
was grouped as (1) never/sometimes and (2) usually/always. Lack of care coordination was
based on the question “Did you receive a family-centered care/received help from different
providers (health care, educational, and other), and how satisfied were you with the
communication between the different providers?” Lack of care coordination was grouped
into (1) did not receive family-centered care/no help from health-care providers/somewhat
dissatisfied/very dissatisfied with the communication and (2) received family-centered care/
help from provider/satisfied/somewhat satisfied with the communication. No routine
screening was derived from the question “Number of times the child received a well-child
checkup, when he was not sick or injured?” and was grouped into two categories: (1) none
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and (2) one/more than one.

Family impact: The impact of the special needs condition on the family was assessed using
three measures of family burden due to child’s condition: financial burden, employment
burden, and time-related burden. Financial burden was derived from two questions:
“Whether family had financial problems due to child’s condition or the family paid US
$5000, US$1000–US$5000, or less than US$1000 for child’s medical care in the past year,
excluding health insurance premiums?” and categorized into two groups: (1) had financial
problems/spent ≥US$1000 for child’s medical care and (2) no financial problems/paid <US
$1000 for child’s medical care. Employment burden was derived from a yes/no response to
the question “Did the caregiver stop working because of child’s condition?” Time-related
burden was asked only to caregivers who provided home-based care and derived from two
questions: “Did you provide home-based care?” And for those who provided home-based
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care, “How many hours did you spend in providing, arranging, and coordinating?” Time-
related burden was categorized into three groups: (1) did not provide home-based care, (2)
<10 h per week of providing home-based care, and (3) ≥10 h per week of providing home-
based care.

Other independent variables: Demographic variables consisted of child’s age (3–5 years,
6–11 years, and 12–17 years), child’s gender (male, female), child’s race and ethnicity (non-
Hispanic Whites, Blacks, Other races, and any Hispanic race), parental marital status
(married, single, divorced/widowed/separated, and no parents in the household).
Socioeconomic status comprised caregiver income level (≤100% Federal Poverty Line
(FPL), 101%–200% FPL, 201%–400% FPL, and >400% FPL) and caregiver education level
(less than high school, high school, and greater than high school). Other variables were as
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follows: metropolitan statistical area (MSA) status (metro, non-metro, and less than 500,000
area population), geographic region (Northeast, Midwest, South, and West), and type of
health insurance (public, private, public/private, other, and none). We also included number
of special needs children (one, more than one) in the household, child’s functional ability
(never affected, sometimes/very little affected, and always/usually affected), and presence of
a physical comorbidity (yes or no).

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Statistical analyses
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Statistically significant associations between a child’s special needs conditions and

demographic, socioeconomic status, and other independent and dependent variables were
tested with chi-square statistics. Unadjusted and multivariable binary and multinomial
logistic regressions were conducted to test the associations between child’s special needs
conditions (ASDs, DDs without ASDs, MHCs without ASDs, and both DDs/MHCs without
ASDs) and measures of access to services, quality of care, and family impact, after
controlling for demographic variables, socioeconomic status, number of special needs
children in the household, child’s functional ability, and presence of a physical comorbidity.
The analyses for inadequacy of insurance coverage outcome measure did not include type of
health insurance as one of the independent variables. All analyses accounted for the complex
survey design of 2009–2010 NS-CSHCN using appropriate clustering, strata, and sampling
weights. PROC SURVEYFREQ and SURVEYLOGISTIC procedures were used in the
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study. Analyses were conducted using SAS 9.3 (SAS Inc.).

Results
Overall, the sample was primarily male (65.0%) and non-Hispanic White (63.1%) children
(data not shown in tabular form). Nearly 50% (47.9%) of children were in the age group 12–
17 years. Overwhelming majority of caregivers were mothers (76.2%); most of the
caregivers were married (57.5%), with greater than high school education (66.7%), and with
above 200% FPL income level (52.1%).

Characteristics of the sample by child’s special needs condition are summarized in Table 1.
In all, 16.1% of the sample were children with ASD; majority of these children were males
(79.9%), older (6–17 years; 83.1%), and only a very small proportion (6.2%) had no
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functional disability (never affected functionally). Of the sample children, 11% had DDs and
no ASDs. Children with DDs were primarily in the age group of 6–17 years (73.1%), and
10.1% had no functional disability. Majority of the children in the sample had MHCs and no
ASDs (58.3%); these children were primarily in the age group of 12–17 years (55.7%), and
30.1% had no functional disability. There were 14.4% children with both DDs/MHCs;
90.8% of these children were in the age group 6–17 years, and 7.9% had no functional
disability.

On further exploration of the data (not shown in tabular form here), it was observed that
there were no statistically significant differences in racial composition between ASD and
MHC groups. As compared to children with ASDs, those with DDs were less likely (odds
ratio (OR) = 0.60, 95% confidence interval (CI) = 0.45–0.81, p < 0.001) to be non-Hispanics
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compared to Hispanic – any race. On the other hand, as compared to children with ASDs,
those with both DDs/MHCs were more likely to be non-Hispanic Blacks (OR = 1.81, 95%
CI = 1.22–2.67, 0.001 < p < 0.01), than Hispanic-any race. There were no statistically
significant differences in rates of physical co-occurring conditions between children with
ASDs and MHCs.

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Child’s special needs condition and outcomes

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Detailed description of the outcome measures and the items used to create the measures are
provided in Table 2.

Bivariate analysis—Table 3 summarizes the unadjusted associations between child’s

special needs conditions and outcomes as measured by access to services, quality of care,
and family impact. Numbers and weighted percentages correspond to caregivers who
reported problems with the respective outcome measures. Caregiver-reported difficulty using
services, difficulty getting referrals, inadequacy of insurance coverage, lack of shared
decision making, lack of coordination, financial burden, employment burden, and time-
related burden differed by the type of special needs condition.

Access to services—More caregivers of children with ASDs reported difficulty using

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services (55.0%) than caregivers of children with DDs (43.7%) and MHCs (36.4%). One-
third (33.4%) of caregivers of children with ASDs reported insurance coverage as
inadequate, as compared to 23.8% of those with DDs and 21.3% of those with MHCs.

Quality of care—Greater proportion of caregivers of children with ASDs reported lack of

shared decision making (43.1%), as compared to caregivers of children with DDs (36.4%)
and MHCs (31.1%). A significantly greater proportion of caregivers of children with ASDs
reported lack of coordination (86.7%) as compared to all other groups (82.2% DDs, 61.0%
MHCs, and 80.2% both DDs/MHCs).

Family impact—Financial burden was observed in greater proportion of caregivers of

children with ASDs (53.2%) than caregivers of children with DDs (40.7%), MHCs (36.0%),
or both (43.0%). Employment burden was observed in greater proportion of caregivers of
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children with ASDs (38.4%), as compared to caregivers of children with DDs (29.9%),
MHCs (11.6%), or both DDs/MHCs (27.0%). Time-related burden was observed in a greater
proportion of caregivers of children with ASDs (24.1%) as compared to caregivers of those
with MHCs (7.9%) and both DDs/MHCs (18.6%).

Unadjusted and adjusted logistic regression analyses—Tables 4 and 5 display the

ORs, adjusted odds ratios (AORs), and 95% CI for unadjusted and adjusted models,
respectively, for each measure of the three outcomes: access to services, quality of care, and
family impact.

Access to services—Caregivers of children with ASDs were significantly more likely to

report difficulty using services as compared to caregivers of children with DDs (AOR =
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1.68, 95% CI = 1.30–2.17) and MHCs (AOR = 1.56, 95% CI = 1.31–1.84). Caregivers of
children with ASDs were also more likely to report lack of source of care as compared to
caregivers of children with DDs (AOR = 1.53, 95% CI = 1.13–2.07), and those with both
DDs/MHCs (AOR = 1.32, 95% CI = 1.01–1.73). Caregivers of children with ASDs were
more likely to report inadequate insurance coverage as compared to caregivers of children
with DDs (AOR = 1.63, 95% CI = 1.20–2.20) and MHCs (AOR = 1.57, 95% CI = 1.30–

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1.90). Caregivers of children with ASDs were not different from caregivers of children with
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both DDs/MHCs in reporting inadequacy of insurance coverage.

Quality of care—Caregivers of children with ASDs were more likely to report lack of
shared decision making, as compared to caregivers of children with DDs (AOR = 1.41, 95%
CI = 1.10–1.80), MHCs (AOR = 1.53, 95% CI =1.28–1.82), or both DDs/MHCs (AOR =
1.35, 95% CI = 1.10–1.66). Caregivers of children with ASDs were also more likely to
report lack of care coordination as compared to caregivers of children with DDs (AOR =
1.42, 95% CI = 1.06–1.91), MHCs (AOR = 3.31, 95% CI = 2.71–4.04), or both DDs/MHCs
(AOR = 1.87, 95% CI = 1.45–2.41). Caregivers of children with ASDs did not differ from
caregivers of children in the other three groups, for the number of routine screenings the
child had in the past 12 months.

Family impact—Caregivers of children with ASDs were more likely to have financial
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burden than caregivers of children with DDs (AOR = 1.45, 95% CI = 1.10–1.91) and MHCs
(AOR = 1.59, 95% CI = 1.33–1.91). There were no significant differences in report of
financial burden between caregivers of children with ASDs and those with both DDs/MHCs.
Caregivers of children with ASDs were also more likely to report employment burden, as
compared to caregivers of children with DDs (AOR = 1.57, 95% CI = 1.23–2.00), MHCs
(AOR = 3.06, 95% CI = 2.51–3.74), and both DDs/MHCs (AOR = 1.73, 95% CI = 1.36–
2.20). Time-related burden was also significantly different for the four groups, where
caregivers of children with ASDs were more likely to report time-related burden as
compared to caregivers of children with MHCs (AOR = 2.87, 95% CI = 2.18–3.78) and both
DDs/MHCs (AOR = 1.80, 95% CI = 1.32–2.44).

Discussion
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This article set out to examine the association between special needs conditions (ASDs,
DDs, MHCs, or both DDs/MHCs) and caregiver-reported issues with access to services,
quality of care, and impact of the condition on the family. After adjusting for demographic
characteristics, socioeconomic status, number of special needs children in the household,
child’s functional ability, and presence of a physical comorbidity, overall, caregivers of
children with ASDs were more likely to report issues with access to services and quality of
care as compared to caregivers of children with DDs, MHCs, or both. Caregivers of children
with ASDs were also more likely to report financial, employment, and time-related burden
as compared to the other three special needs condition groups. One component of access
(getting referrals) and one component of quality (routine screening) were not significantly
associated with special needs conditions groups.
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In our study, compared to caregivers of children with DDs, MHCs, and both DDs/MHCs,
caregivers of children with ASDs were more likely to report difficulty accessing services. A
closer examination of the various aspects of this measure indicated that caregivers of
children with ASDs had difficulties using services because of eligibility, availability of
services, delays in appointments, and difficulty obtaining information about services. For
example, 25.8% caregivers of children with ASDs compared to 11.6% caregivers of children
with MHCs reported limited availability of services. Caregivers of children with ASDs were

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also more likely to report lack of source of care compared to caregivers of children with
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DDs and those with both DDs/MHCs. Taken together, these findings may highlight access
difficulties of children with most complex needs such as children with ASDs due to limited
supply of subspecialty care providers in the United States. It is well documented that there is
a paucity of pediatric subspecialists’ workforce in the United States (Althouse and
Stockman, 2011), and this may lead to children not receiving timely care in their region and
community of residence.

We also observed significant association between inadequacy of insurance coverage and

special needs condition groups. Caregivers of children with ASDs were more likely to report
inadequate insurance coverage (when measured as whether the insurance allows to see
providers as needed) as compared to caregivers of children with DDs and MHCs. These
findings suggest that generous insurance benefits that cover needs of children with ASDs
may reduce the caregiver perception of access difficulties. It is also plausible that caregiver-
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reported insurance inadequacy may decrease over time, as increasing number of states pass
legislative mandates for better insurance coverage of behavioral therapies (such as applied
behavior analysis) for children with ASDs (National Conference of State Legislatures,
2012).

Except for timely/routine screening (i.e. well-child visits), quality of care was poor among
children with ASDs (as reported by caregivers) compared to children with DDs, MHCs, and
both DDs/MHCs. Caregivers of children with ASDs were more likely to report problems in
shared decision making, an important component of family- or patient-centered care
(Institute of Medicine (IOM), 2001), as compared to children with DDs, MHCs, and both
DDs/MHCs. This study supports prior research by Liptak et al. (2006b), which showed that
caregivers of children with DDs and specifically ASDs are more likely to report inability of
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pediatricians and other primary care providers to understand their concerns, to provide
information about their child’s condition, and to put parents in touch with other parents of
children with similar conditions. Levy and team (Autism Speaks, 2012) identified areas
which may be barriers to shared decision making based on interviews with 20 primary care
providers in a hospital in Philadelphia and 20 parents of children with ASDs. These areas
were parent’s perception of primary care pediatrician’s knowledge and help with autism-
related decisions, pediatrician’s lack of confidence in their training to advise parents about
autism-related treatments, and physicians’ discomfort in discussing alternative and
complementary medicine. The researchers also suggested that these areas need to be targeted
for improving provider–patient shared decision making among caregivers of children with
ASDs (Autism Speaks, 2012).
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Caregivers of children with ASDs were more likely to report lack of care coordination
compared to caregivers of children with DDs, MHCs, and both DDs/MHCs. It has to be
noted that the care-coordination variable encompasses health-related medical, educational,
or social services in the past 12 months. As stated in the introduction (Boulet et al., 2009;
Krauss et al., 2003; Liptak et al., 2006a; Volkmar et al., 1999), children with ASDs have
extensive health-care needs along with physical, developmental/neurological comorbidities
(Boulet et al. 2009; Kohane et al., 2012; Maski et al., 2011) due to which they require
services from multiple health-care, educational, and social services providers (Volkmar et

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al., 1999). As our care-coordination measure also includes a communication item, one could
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speculate that caregivers of children with ASDs are also more likely to get in touch with
multiple professionals, requiring consistent communication with different types of health-
care providers. Enhancing communication skills of both caregivers and the health-care
providers and reducing miscommunications among multiple providers may play a significant
role in reducing care-coordination problems for children with ASDs. Our study findings also
suggest that care coordination may be improved by development of better patient–provider
networks and adopting best practices of patient-centered care models.

Impact of the special needs condition on the family was also significantly different across
the four special needs conditions. Caregivers of children with ASDs were more likely to
report employment burden (leaving a job because of child’s condition) compared to all other
special needs condition groups analyzed in our study. Employment burden reported by
caregivers of children with ASDs highlights that the needs of this group are complex and
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challenging for the caregivers/families. Such differences are specific to ASDs, rather than
being associated with having a child with a special needs condition. Caregivers of children
with ASDs were more likely to spend 10 h or more per week in coordinating or arranging
home-based care for the child, as compared to caregivers of children with MHCs or both
DDs/MHCs. In addition, financial burden was also more likely among caregivers of children
with ASDs compared to caregivers of children with DDs and MHCs. All these components
may be related. For example, additional time spent on coordinating or arranging home-based
care may lead a caregiver to leave job for child care and subsequent loss of income. Loss of
income may directly/indirectly add to the financial burden of caregivers of children with
ASDs. Impact of ASDs on the family also has implications for caregiver’s health-related
quality of life. Indeed, some studies have reported that caregivers of children with ASDs not
only bear greater financial and time burden associated with child’s care but also suffer from
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poorer health outcomes when compared to the caregivers of children without ASDs (Cidav
et al., 2012; Kogan et al., 2008; Wang and Leslie, 2010).

It is interesting to note that caregivers of children with both DDs/MHCs were as likely as
caregivers of children with ASDs to report difficulty using services, inadequate insurance
coverage, and financial burden. In our study, we observed that children with both DDs/
MHCs were more likely to have co-occurring physical conditions as compared to children
with ASDs. One could speculate that children with both DDs/MHCs may have extensive
health-care needs due to presence of multimorbidity, and this could translate into greater
health-care use (Bitsko et al., 2009; Boulet et al., 2009; Gurney et al., 2006). Because of the
extensive health-care needs and comorbidity burden common to both the groups, it is
possible that caregivers of children with both DDs/MHCs and ASDs share similar
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experiences in accessing and using services. We also observed that children with both DDs/
MHCs were more likely to live in households with lower incomes. Greater use for health-
care services of children with both DDs/MHCs due to multimorbidity (Bitsko et al., 2009;
Boulet et al., 2009; Gurney et al., 2006) and lower income levels of the households in which
children with both DDs/MHCs live may explain absence of significant differences in the
likelihood of financial burden among caregivers of children with both DDs/MHCs and
ASDs.

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 Vohra et al. Page 11

This study utilized the most recent NS-CSHCN with a nationally representative sample of
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CSHCN. To the best of our knowledge, ours is the first study to comprehensively examine
caregiver-reported access, quality, and family burden across caregivers of four groups of
special needs condition: ASDs, DDs, MHCs, and both DDs and MHCs. Our study also
aligns with some goals of Healthy People 2020, such as a focus on increasing the proportion
of CSHCN who receive their care in family-centered, comprehensive, and coordinated
systems.

However, the limitations of this study need to be considered while interpreting the study
findings. This study was limited by the type of DDs and MHCs available in the survey and
may not have accounted for other neurologic conditions (e.g. schizophrenia). Our special
needs conditions groups (DDs and MHCs) may not be mutually exclusive. ADHD which
falls under MHCs in our study may also qualify as a DD. However, DD and MHC
categorization used in this study has been used in a previous study by Nageswaran et al.
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(2011) utilizing the 2005 NS-CSHCN in assessment of difficulty using services across
different types of special needs conditions. This study did not establish any validity or
reliability of the outcome measures, most of which were adapted from core quality outcomes
for CSHCN established by data resource center for child and adolescent health (Maternal
and Child Health Bureau, 2011). Therefore, replication of the study results may vary
depending on the items used to define the outcome measures. This is a cross-sectional study
which does not establish causality of association of type of special needs condition and
outcome measures.

Conclusion
Based on our study findings, one can conclude that caregivers of children with ASDs face
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significant barriers in access to services and face adverse family impact. In addition, children
with ASDs also receive poor quality of care compared to caregivers of other special needs
conditions (DDs and MHCs). Our findings highlight that children with ASDs form a
vulnerable population within the group of DDs that may require greater provider and
caregiver attention as compared to children with DDs and MHCs. Our findings also suggest
that caregivers of children with ASDs may require services and care that extend beyond that
provided by the current health-care system. Public policies and state-level programs are
needed to reduce the deficits in health-care services for children with ASDs.

Acknowledgments
Funding
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This research was funded by the West Virginia Collaborative Health Outcomes Research of Therapies and Services
(WV CoHORTS) Center (AHRQ grant # R24HS018622-03).

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Table 1

Description of study sample (N = 18,136) by type of special needs condition.

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All ASD DD, no ASD MHC, no ASD DD and MHC, no

ASD

n Column n Column n Column n Column

weighted % weighted % weighted % weighted %

2936 16.1% 2036 11.2% 10,688 58.3% 2476 14.4%

Gender***
Male 2363 79.9 1176 60.2 6859 62.5 1616 63.4
Female 573 20.1 860 39.8 3829 37.5 860 36.6

Age***
3–5 years 415 16.9 539 26.9 341 3.8 183 9.2
6–11 years 1372 47.3 854 44.2 4387 40.6 1116 45.9
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12–17 years 1149 35.8 643 28.9 5960 55.7 1177 44.9

Race/ethnicity***
Hispanic, any race 310 15.3 269 21.4 1032 14.1 286 15.0
Non-Hispanic Whites 2140 63.5 1354 53.4 7851 66.2 1636 58.1
Non-Hispanic Blacks 203 10.7 207 16.4 914 13.2 297 18.9
Non-Hispanic other 283 10.5 206 8.8 891 6.6 257 8.1

Caregiver education***
LT HS 117 7.4 138 12.0 604 12.2 217 16.7
HS 363 16.0 347 24.6 1779 21.0 505 25.5
GT HS 2456 76.7 1551 63.4 8305 66.9 1754 57.8

Poverty level***
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<100% FPL 459 18.6 431 25.6 1992 23.9 681 34.9
101%–200% FPL 607 21.5 436 26.1 2138 22.3 588 25.8
201%–400% FPL 955 32.0 667 27.6 3225 27.7 719 24.2
>400% FPL 915 28.0 502 20.7 3333 26.1 488 15.1
MSA status
Non-metro 362 14.7 323 15.6 1592 15.6 432 18.4
Metro 1615 74.6 1069 75.7 5823 74.1 1242 71.3
<500,000 state population 959 10.7 644 8.8 3273 10.3 802 10.3

Region***
West 870 24.9 613 23.5 2609 19.4 673 20.5
Midwest 581 18.4 442 22.7 2340 21.7 485 21.6
South 843 33.6 594 35.2 3839 41.5 881 39.4
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Northeast 642 23.1 387 18.6 1900 17.4 437 18.6

Marital status***
Single 269 9.8 242 17.3 1216 15.0 331 17.5
Married 2095 66.3 1460 64.0 6696 55.5 1446 50.8
Separated/Widowed/Divorced 458 20.2 257 15.9 2010 22.8 488 23.6

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All ASD DD, no ASD MHC, no ASD DD and MHC, no

ASD
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n Column n Column n Column n Column

weighted % weighted % weighted % weighted %

2936 16.1% 2036 11.2% 10,688 58.3% 2476 14.4%

No Parents in the HH 114 3.8 77 2.8 766 6.8 211 8.1

Number of special children in the HH***

One 2373 66.7 1665 68.7 8380 62.2 1863 57.5
Two or more 563 33.3 371 31.3 2308 37.8 613 42.5

Health insurance type***

Private 1482 45.1 859 34.3 5988 48.4 887 30.8
Public 829 32.0 701 43.7 3356 38.0 1141 52.3
Both 455 17.5 362 17.3 654 6.6 295 10.5
Other 93 3.0 47 1.5 392 3.4 80 3.0
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None 77 2.4 67 3.2 298 3.6 73 3.4

Child’s functional ability***

Never affected 186 6.2 174 10.1 3521 30.1 208 7.9
Sometimes/very little 786 25.7 630 30.5 4681 42.6 842 33.3
Always/usually 1964 68.1 1232 59.5 2486 27.3 1426 58.8

Co-occurring physical condition***

Yes 1468 52.3 1229 66.0 5451 53.9 1470 62.3
No 1468 47.7 807 34.0 5237 46.1 1006 37.7

ASD: autism spectrum disorder; DD: developmental disability (cerebral palsy, Down syndrome, developmental delay, or intellectual disability);
MHC: mental health condition (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression); LT: less than; GT:
greater than; HS: high school; FPL: Federal Poverty Line; MSA: metropolitan statistical area; HH: household; NS-CSHCN: National Survey of
Children with Special Health Care Needs.
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Based on self-reported data from caregivers (N = 18,136) of children aged 3–17 years who had either ASD, DD, or MHC. All analyses accounted
for the complex survey design of 2009–2010 NS-CSHCN. Asterisks represent significant differences in groups based on chi-square tests.
***
p < 0.001.
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Table 2

Description of items used to create outcome measures in the study using 2009–2010 NS-CSHCN.
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Outcome measures Categories

Access to services
Difficulty using services
During the past 12 months, did you have any difficulties or delays getting 1 Had difficulty
services for the child with the special needs conditions due to any of the
six reasons: eligibility for services, availability of health-care providers, 2 No difficulty using services (reference)
appointments for services, cost of services, obtaining information, or any
other
reasons?
Difficulty getting referrals
During the past 12 months, did the special needs child need a referral to see 1 Big/small problem
a doctor or receive services and was getting referral a big/small/no problem
(three-category variable)? 2 No problem (reference)
3 Did not need referral
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Lack of source of care

Usual source of care: Do you have a personal doctor/nurse/ place for routine 1 Lacks usual/specialty source of care/did not
care/sickness? receive any specialty care
2 Has a usual/specialty source of care/received
all specialty care needed (reference)

Specialty source of care: During the past 12 months, was there any time the
special needs child needed a specialty doctor and did the child receive all/any
care?
Adequacy of health insurance coverage
Did the child have a health insurance during the past 12 months and does 1 Does not provide benefits/allows to see
the insurance provide benefits/cover services, or allow to see the health-care providers/no insurance
provider needed?
2 Provides benefits/allows to see a
provider/has insurance (reference)
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Quality of care
Shared decision making
How often did the health-care providers discuss options of health-care 1 Never/sometimes
treatments, encourage to raise concerns/questions, make it easy to raise
concerns/questions, and consider/respect caregiver treatment choices? 2 Usually/always (reference)

Care coordination
Family Centered Care: Did the child visit a health-care provider or a doctor 1 Did not receive family-centered care/help
in the past 12 months. If yes, does the provider: spend enough time with the from health-care providers/somewhat
child with the special needs condition, listen carefully to you, is sensitive to dissatisfied/very dissatisfied with the
your family values and customs, give specific information to you when communication
needed,
or make you feel like a partner in child’s care. 2 Received family-centered care/help from
provider/satisfied/somewhat satisfied with
the communication (reference)

During the past 12 months, did the caregiver need extra help and how often
did the caregiver get help in arranging/coordinating among these different
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health-care providers/services?
Does anyone in doctor’s office/any other person help you arrange/coordinate
care among different health-care providers?
Do doctors or other health-care providers need to communicate with
child’s school, early intervention program, child care providers, vocational
education or rehabilitation program and how satisfied were you with that
communication?

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Outcome measures Categories

Routine screening
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During the past 12 months, how many times did the child with the special 1 None
needs conditions need a well-child checkups?
2 One/more than one (reference)

Family impact
Financial burden
During the past 12 months, did the child’s health conditions cause financial 1 Yes, had financial problems/spent ≥US
problems and did the family pay <US$1000, US$1000–US$5000, or >US $1000
$5000
for child’s medical care? 2 Had no financial problems/spent <US$1000
(reference)

Employment burden
Has the caregiver or any other family member stopped working due to child’s 1 Yes
condition?
2 No (reference)
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Time-related burden
How many hours per week do the caregivers or any other family member 1 ≥ 10 h per week
spend in providing/arranging/coordinating home-based care for the child with
the special needs condition (three category variable)? 2 <10 h per week (reference)
3 Do not provide home-based care

NS-CSHCN: National Survey of Children with Special Health Care Needs.

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Table 3

Access to services, quality of care, and family impact measures by type of special needs condition (N =
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18,136).

All ASD DD, no ASD MHC, no ASD DD and MHC, no

ASD

n Column n Column n Column n Column

weighted % weighted % weighted % weighted %

2936 16.1% 2036 11.2% 10,688 58.3% 2476 14.4%

Access to services

Difficulty using services*** 1598 55.0 882 43.7 3612 36.4 1215 51.5

Difficulty getting referrals*** 328 11.2 187 11.1 655 7.8 301 12.9

Lack of source of care 536 19.9 297 15.5 1762 19.4 426 18.8

Inadequate insurance coverage*** 965 33.4 412 23.8 2001 21.3 621 29.7
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Quality of care

Lack of shared decision making*** 1167 43.1 616 36.4 2912 31.1 911 38.5

Lack of coordination*** 2469 86.7 1643 82.2 6237 61.0 1966 80.2

No routine screening 318 9.1 188 8.3 1116 10.0 223 8.1
Family impact

Financial burden*** 1592 53.2 891 40.7 3936 36.0 1077 43.0

Employment burden*** 1031 38.4 577 29.9 1016 11.6 599 27.0

Time burden*** 585 24.1 485 24.7 646 7.9 415 18.6

ASD: autism spectrum disorder; DD: developmental disability (cerebral palsy, Down syndrome, developmental delay, or intellectual disability);
MHC: mental health condition (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression); NS-CSCHN:
National Survey of Children with Special Health Care Needs.
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Based on self-reported data from caregivers (N = 18,136) of children aged 3–17 years who had either ASD, DD, or MHC. Difficulty getting
referrals and time-related burden were three-category variables. All analyses accounted for the complex survey design of 2009–2010 NS-CSHCN.
Asterisks represent significant differences in groups based on chi-square tests. Column percentages are not provided for caregivers who had no
reported issues with access to services, quality of care, or adverse family impact.
***
p < 0.001.
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Table 4

Unadjusted ORs and 95% CIs from logistic regressions on measures of access to services, quality of care, and
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family impact.

Outcome measures ASD vs MHC ASD vs DD ASD vs DD and MHC

OR 95% CI OR 95% CI OR 95% CI

Access to services
Difficulty using services 2.13*** 1.84–2.48 1.58*** 1.26–1.98 1.15 0.95–1.39

Difficulty getting referrals 1.24 0.96–1.61 1.12 0.79–1.59 0.90 0.67–1.21

Lack of source of care 1.03 0.86–1.24 1.35* 1.02–1.79 1.07 0.83–1.38

Inadequate insurance coverage 1.85*** 1.57–2.18 1.61** 1.20–2.15 1.19 0.96–1.47

Quality of care
Lack of shared decision making 1.68*** 1.44–1.97 1.32* 1.04–1.69 1.21 0.99–1.48
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Lack of coordination 4.27*** 3.56–5.13 1.35* 1.02–1.78 1.72*** 1.34–2.20

No routine screening 0.90 0.72–1.13 1.10 0.79–1.52 1.14 0.85–1.52

Family impact
Financial burden 2.02*** 1.74–2.34 1.65*** 1.31–2.08 1.51*** 1.25–1.82

Employment burden 4.74*** 3.95–5.68 1.46** 1.16–1.85 1.69*** 1.37–2.08

Time burden 3.55*** 2.75–4.59 1.09 0.78–1.51 1.55** 1.17–2.06

OR: odds ratios; CI: confidence intervals; ASD: autism spectrum disorder; DD: developmental disability; MHC: mental health condition (attention
deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression); NS-CSCHN: National Survey of Children with Special Health
Care Needs.
Based on self-reported data from caregivers (N = 18,316) of children aged 3–17 years who had either ASD, DD, or MHC. All analyses accounted
for the complex survey design of 2009–2010 NS-CSHCN. Multinomial logistic regressions were performed for difficulty getting referrals and time-
related burden. In these regressions, the reference groups for the dependent variables were “no difficulty getting referrals” and “no time-related
burden.” The reference groups for other dependent variables in the order of appearance are “no difficulty using services,” “presence of a source of
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care,” “adequate insurance coverage,” “presence of shared decision making,” “satisfactory coordination among and between health care providers,”
“routine screening,” “no financial burden,” and “no employment burden.”
***
p < 0.001;
**
0.001 ≤ p < 0.01;
*
0.01 ≤ p < 0.05.
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Table 5

AORs and 95% CIs from logistic regressions on measures of access to services, quality of care, and family
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impact.

Outcome measures ASD vs MHC ASD vs DD ASD vs DD and MHC

AOR 95% CI AOR 95% CI AOR 95% CI

Access to services
Difficulty using services 1.56*** 1.31–1.84 1.68*** 1.30–2.17 1.16 0.95–1.43

Difficulty getting referrals 1.09 0.82–1.47 1.18 0.82–1.70 0.98 0.71–1.35

Lack of source of care 1.09 0.89–1.33 1.53** 1.13–2.07 1.32* 1.01–1.72

Inadequate insurance coverage 1.57*** 1.30–1.90 1.63** 1.20–2.20 1.20 0.96–1.49

Quality of care
Lack of shared decision making 1.53*** 1.28–1.82 1.41** 1.10–1.80 1.35** 1.10–1.66
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Lack of coordination 3.31*** 2.71–4.04 1.42* 1.06–1.91 1.87*** 1.45–2.41

No routine screening 0.95 0.72–1.26 1.08 0.77–1.53 1.23 0.90–1.68

Family impact
Financial burden 1.59*** 1.33–1.91 1.45** 1.10–1.92 1.23 1.00–1.51

Employment burden 3.06*** 2.51–3.74 1.57*** 1.23–2.00 1.73*** 1.36–2.20

Time burden 2.87*** 2.18–3.78 1.34 0.97–1.87 1.80*** 1.32–2.44

AOR: Adjusted odds ratios; CI: confidence interval; ASD: autism spectrum disorder; DD: developmental disability (cerebral palsy, Down
syndrome, developmental delay, or intellectual disability); MHC: mental health conditions (attention deficit hyperactivity disorder, anxiety,
behavioral/conduct problems, or depression); NS-CSCHN: National Survey of Children with Special Health Care Needs; MSA: metropolitan
statistical area.
Based on self-reported data from caregivers (N = 18,136) of children aged 3–17 years who had either ASD, DD, or MHC. All analyses accounted
for the complex survey design of 2009–2010 NS-CSHCN. Models were adjusted for child’s age, child gender, race and ethnicity, caregiver marital
status, caregiver education, caregiver income level, MSA status, geographic region, type of health insurance, number of special children in the
Author Manuscript

house-hold, child’s functional ability, and a physical comorbidity. Multinomial logistic regressions were performed for difficulty getting referrals
and time-related burden. In these regressions, the reference groups for the dependent variables were “no difficulty getting referrals” and “no time-
related burden.” The reference groups for other dependent variables in the order of appearance are “no difficulty using services,” “presence of a
source of care,” “adequate insurance coverage,” “presence of shared decision making,” “satisfactory coordination among health care providers and
services,” “routine screening,” “no financial burden,” and “no employment burden.”
***
p < 0.001;
**
0.001 ••p < 0.01;
*
0.01 ••p < 0.05.
Author Manuscript

Autism. Author manuscript; available in PMC 2016 June 15.