Abstract

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N  =  4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care.

In the last two decades, significant gains have been realized in improving children's overall access to medical care (Dunderstadt, Hughes, Soobader, Newacheck, 2006; Shone, Dick, Klein, Zwanziger, & Szilagyi, 2005). However, disparities persist in access, utilization, and quality of care for certain subgroups of children, including those who are Black and Latino, live in lower income households, and have greater functional limitations (Coker, Rodriguez, & Flores, 2010; Flores, 2010; Raphael, Guadagnolo, Beal, & Giardin, 2009; Strickland et al., 2009). Quality of care is particularly important because there is some evidence that it is related to patient satisfaction with care and ease of service use, leading to better health outcomes (Abraido-Lanza, Cespedes, Daya, Florez, & White, 2011; Coker et al., 2010).

Within the population of children with special health care needs, two groups have encountered disparities in health care: children with developmental disabilities including autism, and children who are Black and Latino as compared with White children. Children with developmental disabilities have greater health care needs and require increased use of health services as compared with other children with special health care needs (Krahn, Hammond, & Turner, 2006; Liptak, Stuart & Auinger, 2006). Among children with developmental disabilities and other special health care needs, those with autism face exceptional challenges securing adequate health care and services (Kogan et al., 2008; Krauss, Gulley, Sciegaj, & Wells, 2003; Liptak, Stuart, & Auinger, 2006). In addition, there are significant racial and ethnic disparities in health care access, use, and quality among children with special health care needs (Coker et al., 2010; Flores, 2010; Flores, Olson, & Tomany-Korman, 2005; Raphael et al., 2009). Despite evidence of disparities by race and ethnicity in health care quality for children with special health care needs, little research has examined the disparities in quality of care among children with autism and other developmental disabilities. Our investigation is a novel contribution to the existing research because it examines the prevalence of health care disparities with a focus on race and ethnicity, autism and developmental disabilities, and quality of care. The particular vulnerabilities of these populations make these analyses important.

Quality of health care for children is sometimes referred to as family-centered care and is often measured as family perceptions of and satisfaction with their interaction with the provider, including having a personal doctor who listens, spends sufficient time, provides information, treats families as partners, and respects family cultural norms and values (Coker et al., 2010; Montes & Halterman, 2011).

Children with developmental disabilities face unique challenges securing quality health care services. The Surgeon General's Report (Office of the Surgeon General, National Institute of Child Health and Human Development, Centers for Disease Control and Prevention, 2002) highlighted concerns with the shortage of physicians willing to accept patients with intellectual disability and the ability to understand the specialized health care needs of these patients. Physicians in turn have reported feeling inadequately prepared to treat patients with developmental disabilities (Heidgerken, Geffken, Modi, & Frakey, 2005; Reichard & Turnbull, 2004). In other research, physicians identified inadequate training during medical school and residency and a lack of exposure to individuals with developmental disabilities as significant barriers to providing care to these patients, as well as limited time to see patients with developmental disabilities because of insurance constraints (Kerins, Petrovic, Gianesini, Keilty, & Bruder, 2004; Reichard & Turnbull, 2004; Stein, 2008).

Children and adults with autism seem to face even greater challenges securing adequate care. In one study, health care providers reported holding outdated beliefs about autism such as parental coldness, children's inability to feel affection, and beliefs that children with autism were deliberately noncompliant and that they would outgrow their autism if given appropriate treatment (Heidgerken et al., 2005). The extent of differential health care experiences between children with autism and other developmental disabilities is unclear, but parents of children with autism have reported greater difficulty obtaining access to specialty care compared to children with mental retardation (Krauss et al., 2003; Liptak et al., 2006). In one study, parents of children with autism were more likely to use specialty services but less likely to report that their health care provider discussed specialty services with them. In addition, parents of children with autism were more likely than parents of children with other conditions to feel the doctor did not spend sufficient time with them (Brachlow, Ness, McPheeters, & Gurney, 2007).

In addition to inadequate care that has been found for children with autism and developmental disabilities, Black and Latino children are more likely to have difficulty accessing specialty care compared with White children (Bethell et al., 2011; Liptak et al., 2008), making the present investigation of Black and Latino children with autism and developmental disabilities particularly important.

In comparison with White families, families of Black and Latino children with special health care needs consistently report their provider does not spend enough time with them (Coker, et al., 2010; Raphael et al., 2009) or listen well (Coker et al., 2010). Additionally, Black and Latino families of children with special heath care needs were less likely than White families to feel they received needed information and were less satisfied with their provider's interactions (Coker et al., 2010). In another study, Latino parents were more likely than their White or Black counterparts to report their provider did not spend enough time with them (Flores et al., 2005). Latino families reported lower overall satisfaction with the quality of care their children received in a different study (Seid, Stevens, & Varni, 2003). There is some evidence that poor quality of care is exacerbated among Black children with autism compared to Black children with other special health care needs, and to White children with autism (Montes & Halterman, 2011). However, it is unknown whether this is the also the case for Latino children.

Theoretical Framework

In this article, we examine racial and ethnic disparities in health care quality among children with autism and other developmental disabilities using Andersen's (1995) Behavioral Model of Health Care Use. This model, widely used in public health research, posits that predisposing factors (e.g., education, race, ethnicity), enabling factors (e.g., insurance), and need factors (e.g., child's condition severity) work together to predict health access, which includes quality of care. In our model, predisposing factors include parent education, family structure, and race and ethnicity. Enabling factors include family income and whether the child has insurance, and need factors include the severity of the child's disability and whether the child has autism or other developmental disabilities. The existing gaps in the research literature, shaped by this theoretical framework, prompted the present study to address the following research questions:

  1. Are there racial and ethnic disparities in quality of care?

  2. As compared to children with other developmental disabilities, do children with autism have worse quality of care outcomes?

  3. Are racial and ethnic disparities in quality of care exacerbated among children with autism compared to children with other developmental disabilities?

Method

Data and Sample

The data used in this study were drawn from the 2005–2006 wave of National Survey of Children with Special Health Care Needs (NS-CSHCN), a random digit–dialed telephone survey conducted by the National Center for Health Statistics between April 2005 and February 2007 (U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 2008). A 5-question screening instrument identified households that included a child with special health care needs, and a child was selected at random if more than one child with special health care needs was identified. Detailed interviews about child and family characteristics, the child's condition and type of health care need, and the quality of care the child experienced were then conducted with a knowledgeable parent or guardian. The data are representative of the population of U.S. children with special health care needs in non-institutionalized settings. Additional details about methods and identification of children with special health care needs are available elsewhere (Bethell et al., 2002; Blumberg et al., 2003). We focused our analysis on White, Black, and Latino children whose parents or caregivers indicated that they had been diagnosed with any of the following developmental disabilities: autism, Down syndrome, cerebral palsy, or mental retardation, which reduced the analytic sample to 682 Black, 665 Latino, and 3,762 White children; 517 children of other races and ethnicities (including Native American or Aleutian, Pacific Islander, Asian, and multiracial) were retained out of concerns for selection bias but were not examined in depth. When weighted, the sample represented 265,035 Black children with developmental disabilities, 201,930 Latino children with developmental disabilities, 898,783 White children with developmental disabilities, and 112,998 children of other races and ethnicities having developmental disabilities. Because of valid nonresponses to the dependent variables, the actual samples reported on vary slightly from the overall samples.

Table 1 describes the sample. White, Black, and Latino families differed in numerous ways. Consistent with demographic studies of the U.S. population, Black and Latino families were disadvantaged compared to Whites on income, parental education level, and child's health insurance coverage. Significantly more White children had autism compared to Black and Latino children. Black children were more likely to have health care needs that were not stable compared to White and Latino children. White mothers were less likely than Black and Latino mothers to be single.

Table 1

Description of the Sample

Description of the Sample
Description of the Sample

Measures

Dependent variables

There were six binary measures of health care quality: (a) child does not have personal doctor or nurse; (b) doctor does not spend enough time with child; (c) doctor does not listen carefully; (d) provider is not sensitive to family's values or customs; (e) doctor does not make child's parents feel like a partner; and (f) doctor does not provide enough information. Each dependent variable was recoded from its source in the NS-CSHCN survey such that it measured the presence of a disparity (e.g., child does not have personal doctor or nurse  =  1).

Predisposing factors

This domain includes our primary independent variable, race and ethnicity. Race and ethnicity were entered as three dichotomous independent variables identifying Black and Latino children as well as children of other races and ethnicities, with a common reference group being White children. Children identified as Hispanic were counted as Latino regardless of their race. This investigation was primarily focused on the disparities faced by Black and Latino children, in comparison to White children, but children of other races and ethnicities were included, separately identified, and controlled for so as not to bias the results.

Other variables in this domain of the theoretical model included several binary indicators: highest parental education (less than high school graduation, compared to high school graduate or higher); and parental marital status (single mother compared to single fathers or married and cohabiting couples).

Enabling factors

Here we included binary variables indicating family income (below 200% of the federal poverty level compared to 200% or higher) and indicating that the child had no health insurance (compared to publicly or privately insured children).

Need factors

This domain included the child's disability status (1  =  did not have autism) and severity of the child's condition (severe compared to mild or moderate).

Interaction

In one version of the multivariate models, we interacted the variable identifying the child's disability status with the race and ethnicity variables identifying Black and Latino children (but not children of other races and ethnicities). This allowed us to determine whether the racial disparity varied according to whether or not the child had autism or other developmental disabilities (Aiken & West, 1991).

Analytical Strategy

Bivariate and multivariate analyses were conducted. Bivariate analyses compared Black, Latino, and White children on the six dependent variables. Multivariate analysis was conducted with logistic regression because the dependent variables were binary. Coefficients were interpreted as log-odds and exponentiated to obtain odds ratios expressing the odds of having the disparity in the focal group (e.g., Latino children) in comparison to the reference group (e.g., White children), conditioned on the covariates.

Weighting and variance adjustment

The NS-CSHCN is a stratified sample, which requires both probability weighting and adjustments to standard errors. SUDAAN, which handles both the weighting and variance adjustments (via Taylor-series linearization) was used (Research Triangle Institute, 2001).

Missing data

There were missing data throughout the NS-CSHCN, including nearly 9 percent on income. Consequently, we used multiple imputation (Schafer, 1997): conditional probability distributions for the missing values were developed from a model consisting of 70 of the variables in the NS-CSHCN. Fifteen imputed versions of the data set were created using SAS Proc MI (SAS Institute Inc., 2004); SUDAAN (Research Triangle Institute, 2001) handled estimation of the model on each separate imputation and the combining of the estimates according to rules that account for the uncertainty of the randomly drawn values (Rose & Fraser, 2008; Graham, Olchowski, & Gilreath, 2007; Schafer & Graham, 2002; Rubin, 1987). Each dependent variable also has a certain proportion of valid nonresponse (i.e., because respondents were not eligible to answer certain questions because of logic or skip patterns in the survey). These valid nonresponses were not imputed, reducing the sample for each dependent variable. Among the 5,658 children with developmental disabilities in the sample, valid nonresponses ranged from a low of 14 (child does not have personal doctor or nurse) to a high of 332 (provider is not sensitive to cultural needs).

Results

Bivariate Results

Table 2 reports the bivariate findings on all of the outcome variables between Whites, Blacks, and Latinos. Among all children with autism and developmental disabilities, there are significant racial disparities on all but one outcome: doctor did not listen carefully. The differences were even more glaring between Latino and White children. Children from Black and Latino families were less likely to have a personal doctor or nurse. Black and Latino parents were more likely than White parents to report that the provider did not spend enough time with their child and that providers were not sensitive to family's values and customs. Lastly, Black and Latino parents were more likely than White parents to report that the doctor does not make parents feel like partner and that they did not receive enough information from the doctor.

Table 2

Bivariate Description of Quality Outcomes for White, Black, and Latino Children with Autism

Bivariate Description of Quality Outcomes for White, Black, and Latino Children with Autism
Bivariate Description of Quality Outcomes for White, Black, and Latino Children with Autism

Multivariate Results

For research Question 1, we examined whether there were racial/ethnic disparities on quality outcomes. Logistic regression models demonstrate that after controlling for covariates, there were significant racial and ethnic disparities on five of the six outcomes for families having children with autism (see Table 3). Latino children with autism and other developmental disabilities had higher odds of not having a personal doctor or nurse, than White children. Both Black and Latino families had significantly higher odds of reporting that their doctor did not spend enough time with their child compared to White families. Latino parents were more likely to report that providers were not sensitive to the family's values and customs than White families. They also were more likely to report that their child's doctor did not make them feel like a partner in their child's health and that doctors did not provide enough information.

Table 3

Odds ratios (95% Confidence Intervals) for Multivariate Regression Results

Odds ratios (95% Confidence Intervals) for Multivariate Regression Results
Odds ratios (95% Confidence Intervals) for Multivariate Regression Results

In our second research question, we asked whether having a child with autism was related to lower quality of care for the overall sample. Adjusting for covariates (see Table 3), we found that parents of children with autism were more likely to report that their doctor did not spend enough time with their child; that their doctor did not listen; that their providers were not sensitive to the family's values and customs; and that doctors do not provide enough information.

In our third research question, we asked whether racial and ethnic disparities differ or are exacerbated among children with autism compared to children with other developmental disabilities. To test this, we modeled interactions of race or ethnicity and disability status. The interaction terms answer research Question 3, telling us (a) the size of the difference in the racial or ethnic disparity for Black and Latino families, between children with autism and children with other developmental disabilities, (b) whether there are differences between autism and other developmental disabilities within racial and ethnic groups, and (c) whether the differences are significant. We found that the size of the racial and ethnic differences was greater for children with autism compared to children with other developmental disabilities on two outcome variables for Black children and on one outcome variable for Latinos, both in comparison to Whites. These significant interactions are shown in the bottom two rows of Table 4. The disparities between Black and White children with autism are greater for not having a personal doctor and not spending enough time with the doctor than they are between Black and White children with other developmental disabilities. Likewise, the difference between Latino and White children with autism was greater for doctor not listening than the difference between Latino and White children with other developmental disabilities.

Table 4

Odds Ratios (95% Confidence Intervals) for Multivariate Regression Results with Interaction of Race, Ethnicity, and Autism

Odds Ratios (95% Confidence Intervals) for Multivariate Regression Results with Interaction of Race, Ethnicity, and Autism
Odds Ratios (95% Confidence Intervals) for Multivariate Regression Results with Interaction of Race, Ethnicity, and Autism
Table 4

Continued

Continued
Continued

These significant interactions also show differences across disability type within racial/ethnic groups. Black families were 64% less likely to report that their child does not have a personal doctor if the child had other developmental disabilities, relative to Black families having children with autism. The same pattern was found for the doctor does not spend enough time. Black children with developmental disabilities other than autism were 53% less likely to have a doctor who does not spend enough time, relative to Black children with autism.

Compared to Latino families of children with autism, families of children with other developmental disabilities were 59% less likely to report that the doctor did not listen. This same difference between autism and other developmental disabilities was not found for White children on these three outcome variables. However, differences remain between children with autism and children with other developmental disabilities for the overall sample on the outcome that the doctor does not provide enough information.

Discussion

The aims of our study were to describe racial and ethnic disparities in quality of care for children with autism and other developmental disabilities; to determine if quality of care differed between children with autism compared to children with other developmental disabilities; and to examine whether racial and ethnic disparities were worse when the child had autism versus other developmental disabilities. This study builds on research that has demonstrated racial and ethnic disparities in health care for children with special health care needs (Coker et al. 2010; Liptak et al., 2008; Montes & Halterman, 2011; Raphael, et al., 2009; Seid et al., 2003). However, it is the first study of its kind to examine racial and ethnic differences in health care quality among a national sample of children with autism and other developmental disabilities.

Limitations

A consideration of the study's limitations is necessary to fairly interpret the findings. We cannot infer causality because the NS-CSHCH is cross-sectional data, making temporal relationships unclear. There may be confounding effects from unobserved variables that were not measured. It is also possible that there are unmeasured variables that account for quality of care disparities, for example, the immigrant status of Latino parents. Although the data set included a measure of whether the telephone survey was conducted in a language other than English, we did not include this variable because the majority of the cases were in the smaller Latino subsample. As a result, in the interaction analyses, some cells were empty with respect to this variable, and it was therefore not possible to determine which effects were associated with language and which were associated with ethnicity. Further research to understand the experiences of immigrant children with autism and other developmental disabilities is clearly warranted. Finally, the survey data analyzed here, like that available in nearly all of the large-scale national health surveys, relies on self-reported data by the child's parent or guardian. The children's diagnoses were not independently verified by a clinician, nor were the quality of care measures corroborated with other evidence. Despite these limitations, our study reduces selection bias present in many clinical population studies by using a nationally representative sample of children with autism and developmental disabilities.

In our models, we adjusted for predisposing, enabling, and need factors as suggested by the Andersen Behavioral Model for Health Care Use (Andersen, 1995). There were racial and ethnic differences on several of the factors, therefore it was important to take them into account in our multivariate analyses. For example, White families were more likely to have higher incomes, insurance (enabling factors), higher levels of education, and to be in two-parent families than one or both of the other two groups (predisposing factors). These findings are consistent with other studies on racial and ethnic differences of families with children with special health care needs (Coker et al. 2010; Liptak et al., 2008; Raphael, et al., 2009; Seid et al., 2003). With respect to need factors, White families were more likely to have a child with autism. This is consistent with recent studies that show that White children are more likely to receive an autism spectrum disorder diagnosis as compared to Latino and Black children (Jarquin, Wiggins, & Schieve, 2011; Mandell et al., 2009). We also found that Black families were more likely to report that the child's health care needs were not stable.

After adjusting for these important differences, racial and ethnic disparities persisted across nearly all of the quality of care outcomes. Our findings, which examined quality outcomes among a sample of children with autism and developmental disabilities, are consistent with findings from the study by Coker et al. (2010) in which they examined these outcomes with a sample of children with special health care needs defined more broadly. Although Latino families face similar socioeconomic disadvantages as Black families and perhaps face similar issues with respect to providers' inadequate understanding of their culture and experiences, many Latino families also face language barriers and undocumented immigrant status that may account for the additional disparities we found. Coker et al. examined language differences on quality of care outcomes and found that non-English speaking families reported lower quality of care than English-speaking Latino families.

With respect to our question about differences on quality outcomes between families of children with autism and families of children with other developmental disabilities, we found that families of children with autism in the overall sample were more likely to report that the doctor did not spend enough time with the child, did not listen, was not sensitive to families' values and customs, and did not provide enough information. These findings are consistent with those from Brachelow et al. (2007) who found that families of children with autism were more likely to report that providers did not discuss specialty care services and did not spend sufficient time with them compared to families of children with developmental disabilities. Further, our findings add new knowledge to emerging research on differences in health care quality between children with autism and children with developmental disabilities. Because rates of autism are growing, more specialized interventions are being developed to address the specific behavioral, social, and communication needs of children with autism. There is a growing body of research demonstrating that the earlier children with autism access these interventions, the better their outcomes will be in the future (Dawson et al., 2010).

Our findings also suggest that some differences in quality of care between children with autism and children with other developmental disabilities depend on the child's race and ethnicity. Black families of children with autism were more likely to report not having a personal doctor and that the doctor does not spend enough time with them as compared to Black families of children with developmental disabilities. However, these differences were not found for White families. Similarly, Latino families of children with autism were more likely to report that their doctor does not listen as compared to Latino families of children with developmental disabilities; however, this is not the case for White families. These findings suggest unique hardships for Black and Latino families of children with autism in obtaining quality of care. Previous research suggests these families have difficulties navigating the service system to obtain diagnoses of autism spectrum disorders for their children (Jarquin et al., 2011; Mandell et al., 2009). The present study indicates similar difficulties may contribute to challenges for these families in navigating the health care system once their child is diagnosed.

Research on racial and ethnic health disparities has found that structural factors such as socio-economic status, segregation, language barriers, and discrimination may contribute to these disparities (LaVeist et al., 2007; Rust & Cooper, 2007; Yu & Singh, 2009). In this study we controlled for socioeconomic status, yet the disparities remained. Findings by Yu and Singh (2009) indicate that parents of children with special health care needs whose primary language was not English were twice as likely to lack family-centered care compared to English-speaking parents, suggesting that language barriers contribute to disparities among Latinos. This may also partially explain our findings. A large and robust body of research shows that nondisabled patients from racial and ethnic minority groups receive markedly inadequate health care services (Smedley, Stith, & Nelson, 2003), however, there is very little about the health care of Black or Latino children with autism and other developmental disabilities. A case study of a middle class Black family of a child with autism reported that the parents experienced insensitive attitudes by providers who were evaluating their child, which caused the family to be cautious when seeking further services (Gourdine, Baffour, & Teasley, 2011). This family reported that providers made pejorative assumptions about their child's behavior and seemed to be uninformed about the scope of behaviors and problems that children with autism had (Gourdine et al., 2011). Research on parenting stress has found that caring for a child with autism is more stressful than caring for children with other developmental disabilities, primarily because of greater levels of maladaptive behaviors among children with autism (Abbeduto et al., 2004). The combination of being a person of color and having a child who exhibits behavior problems may influence the reception of these families by health care providers.

Implications

Quality of health care for children with autism and other developmental disabilities is critically important because higher quality may contribute to greater service utilization, and can lead to better outcomes for children. Our findings suggest that it is imperative for health care providers to improve their interactions with Latino and Black children with developmental disabilities and their families, and children with autism in particular. These families may need help in establishing a personal health care provider for their children. Providers who respectfully listen to their patients, spend sufficient time with them, make them feel like partners, and who are sensitive to family values and customs demonstrate high levels of cultural competence in working with diverse families (Engebretson, 2011). Our findings suggest that many providers could benefit from cultural competency training. Training programs for health care providers in cultural competence often include expanding knowledge about specific ethnic groups, enhancing communication skills, and developing culturally competent skills such as working with interpreters and using cultural brokers (Thom, Tirado, Woon, & McBride, 2006). Our research suggests that these areas of training would be useful for providers. These findings also suggest that insurance-driven incentives and other policy initiatives that promote the provision of quality care, and cultural competence of health care providers, are important for these children and their families.

Providing health care to children with autism presents unique challenges and as our research findings suggest, confounds health care quality for Black and Latino children. Providers need to understand the specific health and behavioral health needs of children with autism, and they need to learn more about the specialty services available to them so they can share this information with parents.

Future research is needed to examine racial and ethnic disparities in specialty care services for children with autism, and the experiences of Black and Latino families of children with autism with the health care systems, in particular. Research that examines the effectiveness of cultural competence training for providers of children with autism and developmental disabilities towards reducing racial and ethnic disparities in health care is also needed.

Conclusion

In summary, this study provides new evidence of racial and ethnic disparities in the quality of health care quality for Black and Latino children compared to that for White children with autism and developmental disabilities and disparities between children with autism compared to children with other developmental disabilities. Racial and ethnic disparities in health care quality were exacerbated by having autism compared to having other developmental disabilities and differences in quality of care between children with autism compared to children with developmental disabilities varied by race or ethnicity. This study is the first investigation of such disparities in health care quality within and across the population of children with autism and other developmental disabilities. Across a range of outcomes, Black and Latino children with autism had markedly worse health care quality as compared with White children and Black and Latino children with other developmental disabilities. These findings indicate that policy measures to improve the health care quality received by these vulnerable children and their families are urgently needed.

References

References
Abbeduto
,
L
.,
Seltzer
,
M
.,
Shattuck
,
P
.,
Krauss
,
M
.,
Orsmond
,
G
.,
&
Murphy
,
M
.
(
2004
).
Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome
.
American Journal on Mental Retardation
,
109
,
237
254
.
Abraido-Lanza
,
A
.,
Cespedes
,
A
.,
Daya
,
S
.,
Florez
,
K
.,
&
White
,
K
.
(
2011
).
Satisfaction with health care among Latinas
.
Journal of Health Care for the Poor and Underserved
,
22
,
491
505
.
Aiken
,
L S
.,
&
West
,
S. G
.
(
1991
).
Multiple regression: Testing and interpreting interactions
.
Thousand Oaks, CA
:
Sage
.
Andersen
,
R. M
.
(
1995
).
Revisiting the behavioral model and access to medical care: Does it matter
?
Journal of Health and Social Behavior
,
36
,
1
10
.
Bethell
,
C. D
.,
Kogan
,
M. D
.,
Strickland
,
B. B
.,
Schor
,
E. L
.,
Robertson
,
J
.,
&
Newacheck
,
P. W
.
(
2011
).
A national and state profile of leading health problems and health care quality for U.S. children: Key insurance disparities and across-state variations
.
Academic Pediatrics
,
11
(
3
),
S22
S33
.
Blumberg
,
S. J
.,
Olson
,
L
.,
Frankel
,
M
.,
Osborn
,
L
.,
Becker
,
C. J
.,
Srinath
,
K. P
.,
&
Giambo
,
P
.
(
2003
).
Design and operation of the National Survey of Children with Special Health Care Needs, 2001. Vital and Health Statistics (Series 1, No. 41)
. .
Brachlow
,
A. E
.,
Ness
,
K. K
.,
McPheeters
,
M. L
.,
&
Gurney
,
J. G
.
(
2007
).
Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs
.
Archives of Pediatric and Adolescent Medicine
,
161
,
399
405
.
Coker
,
T. R
.,
Rodriguez
,
M. A
.,
&
Flores
,
G
.
(
2010
).
Family centered care for U.S. children with special health care needs: Who gets it and why
?
Pediatrics
,
125
,
1159
1167
.
Dawson
,
D
.,
Robers
,
S
.,
Munson
,
J
.,
Smith
,
M
.,
Wintr
,
J
.,
Greenson
,
J
., …
&
Varley
,
J
.
(
2010
).
Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver model
.
Pediatrics
,
125
,
e17
e23
.
Dunderstadt
,
K. G
.,
Hughes
,
D. C
.,
Soobader
,
M
.,
&
Newacheck
,
P. W
.
(
2006
).
The impact of public insurance expansions on children's access and use of care
.
Pediatrics
,
118
,
1676
1682
.
Engebretson
,
J
.
(
2011
).
Clinically applied medical ethnography: Relevance to cultural competence in patient care
.
Nursing Clinics of North America
,
46
,
145
154
.
Flores
,
G
.
(
2010
).
Technical Report: Racial and ethnic disparities in the health and health care of children
.
Pediatrics
,
125
,
e183
e193
.
Flores
,
G
.,
Olson
,
L
.,
&
Tomany-Korman
,
S. C
.
(
2005
).
Racial and ethnic disparities in early childhood health and health care
.
Pediatrics
,
115
,
e183
e193
.
Gourdine
,
R
.,
Baffour
,
T
.,
&
Teasley
,
M
.
(
2011
).
Autism and the African American community
.
Social Work in Public Health
,
26
,
454
470
.
Graham
,
J. W
.,
Olchowski
,
A. E
.,
&
Gilreath
,
T. D
.
(
2007
).
How many imputations are really needed? Some practical clarifications of multiple imputation theory
.
Prevention Science
,
8
,
206
213
.
Heidgerken
,
A
.,
Geffken
,
G
.,
Modi
,
A
.,
&
Frakey
,
L
.
(
2005
).
A survey of autism knowledge in a health care setting
.
Journal of Autism and Developmental Disorders
,
35
,
323
330
.
Jarquin
,
V
.,
Wiggins
,
L
.,
&
Schieve
,
L
.
(
2011
).
Racial disparities in community identification of autism spectrum disorders over time: Metropolitan Atlanta, Georgia, 2000–2006
.
Journal of Developmental and Behavioral Pediatrics
,
32
,
179
187
.
Kerins
,
G
.,
Petrovic
,
K
.,
Gianesini
,
J
.,
Keilty
,
B
.,
&
Bruder
,
M. B
.
(
2004
).
Physician attitudes and practices on providing care to individuals with intellectual disabilities: an exploratory study
.
Connecticut Medicine
,
68
,
485
490
.
Kogan
,
M
.,
Strickland
,
B
.,
Blumberg
,
S
.,
Singh
,
G
.,
Perrin
,
J
.,
&
van Dyck
,
P
.
(
2008
).
A national profile of health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006
.
Pediatrics
,
122
,
e1149
e1158
.
Krahn
,
G. L
.,
Hammond
,
L
.,
&
Turner
,
A
.
(
2006
).
A cascade of disparities: Health and health care access for people with intellectual disabilities
.
Mental Retardation and Developmental Disabilities Research Reviews
,
12
,
70
82
.
Krauss
,
M. W
.,
Gulley
,
S
.,
Sciegaj
,
M
.,
and
Wells
,
N
.
(
2003
).
Access to specialty medical care for children with mental retardation, autism and other special health care needs
.
Mental Retardation
41
,
329
339
.
LaVeist
,
T
.,
Thorpe
,
R
.,
Bowen-Reid
,
T
.,
Jackson
,
J
.,
Gary
,
T
.,
Gaskin
,
D
.,
&
Browne
,
D
.
(
2007
).
Exploring health disparities in integrated communities: Overview of the EHDIC study
.
Journal of Urban Health: Bulletin of the New York Academy of Medicine
,
85
,
11
21
.
Liptak
,
G
.,
Benzoni
,
L
.,
Mruzek
,
D
.,
Nolan
,
K
.,
Thingvoll
,
M
.,
Wade
,
C
.,
&
Fryer
,
G. E
.
(
2008
).
Disparities in diagnosis and access to health services for children with autism: Data from the national survey of childen's health
.
Journal of Developmental Pediatrics
,
29
,
152
160
.
Liptak
,
G. S
.,
Stuart
,
T
.,
&
Auinger
,
P
.
(
2006
).
Health care utilization and expenditures for children with autism: Data from U.S. national samples
.
Journal of Autism and Developmental Disorders
,
36
,
871
879
.
Mandell
,
D. S
.,
Wiggins
,
L. D
.,
Carpenter
,
L. A
.,
Daniels
,
J
.,
DiGuiseppi
,
C
.,
Durkin
,
M
., …
Kirby
,
R
.
(
2009
).
Racial/ethnic disparities in the identification of children with autism spectrum disorders
.
American Journal of Public Health
,
99
,
493
498
.
Montes
,
G
.,
&
Halterman
,
J
.
(
2011
).
White–Black disparities in family-centered care among children with autism in the United States: Evidence from the NS-CSHCN 2005–2006
.
Academic Pediatrics
,
11
,
297
304
.
Office of the Surgeon General, National Institute of Child Health and Human Development, Centers for Disease Control and Prevention
. (
2002
).
Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation
.
Washington, DC
:
U.S. Department of Health and Human Services
. .
Raphael
,
J. L
.,
Guadagnolo
,
A
.,
Beal
,
A. C
.,
&
Giardino
,
A. P
.
(
2009
).
Racial and ethnic disparities in indicators of a primary care medical home for children
.
Academic Pediatrics
,
9
,
221
227
.
Reichard
,
A
.,
&
Turnbull
,
H. R
.
(
2004
).
Perspectives of physicians, families and case managers concerning access to helth care by individuals with developmental disabilities
.
Mental Retardation
,
42
,
181
194
.
Research Triangle Institute
. (
2001
).
SUDAAN (8.0) [Computer software]
.
Research Triangle Park, NC
:
Author
.
Rose
,
R. A
.,
&
Fraser
,
M. W
.
(
2008
).
A simplified framework for using multiple imputation in social work research
.
Social Work Research
,
32
,
172
178
.
Rubin
,
D. B
.
(
1987
).
Multiple imputation for nonresponse in surveys
.
New York, NY
:
Wiley
.
Rust
,
G
.,
&
Cooper
,
L
.
(
2007
).
How can practice-based research contribute to the elimination of health care disparities
.
Journal of the American Board of Family Medicine
,
20
,
105
114
.
SAS Institute, Inc
. (
2004
).
SAS/STAT (9.1) [Computer software]
.
Cary, NC
:
SAS Institute
.
Schafer
,
J. L
.
(
1997
).
Analysis of incomplete multivariate data
.
Boca Raton, FL
:
Chapman Hall/CRC
.
Schafer
,
J. L
.,
&
Graham
,
J. W
.
(
2002
).
Missing data: Our view of the state of the art
.
Psychological Methods
,
7
,
147
177
.
Seid
,
M
.,
Stevens
,
G. D
.,
&
Varni
,
J. W
.
(
2003
).
Parents' perceptions of pediatric primary care quality: Effects of race/ethnicity, language, and access
.
Health Services Research
,
38
,
1009
1032
.
Shone
,
L. P
.,
Dick
,
A. W
.,
Klein
,
J. D
.,
Zwanziger
,
J
.,
&
Szilagyi
,
P. G
.
(
2005
).
Reduction in racial and ethnic disparities after enrollment in the state children's health insurance program
.
Pediatrics
,
115
,
e697
705
.
Smedley
,
B
.,
Stith
,
A
.,
&
Nelson
,
A
.
(
2003
).
Unequal treatment: Confronting racial and ethnic disparities in health care
.
Washington, DC
:
National Academy Press
.
Stein
,
G. L
.
(
2008
).
Providing palliative care to people with intellectual disabilities: Services, staff knowledge, and challenges
.
Journal of Palliative Medicine
,
11
,
1241
1248
.
Strickland
,
B. B
.,
Singh
,
G. S
.,
Kogan
,
M. D
.,
Mann
,
M. Y
.,
van Dyck
,
P. C
.,
&
Newacheck
,
P. W
.
(
2009
).
Access to the medical home: new findings form the 2005–06 national survey of children with special health care needs
.
Pediatrics
,
123
,
e996
1004
.
Thom
,
D
.,
Tirado
,
M
.,
Woon
,
T
.,
&
McBride
,
M
.
(
2006
).
Development and evaluation of a cultural competency training curriculum
.
BCM Medical Education
,
6
,
1
9
.
doi:10.1186/1472-6920-6-38
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau
. (
2008
).
The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
.
Rockville, MD
:
U.S. Department of Health and Human Services
.
Yu
,
S
.,
&
Singh
,
G
.
(
2009
).
Household language use and health care access, unmet need, and family impact among CSHCN
.
Pediatrics
,
124
,
S414
S417
.

Author notes

Editor-in-Charge: Glenn Fujiura

Sandra Magaña (e-mail: magana@waisman.wisc.edu), University of Wisconsin-Madison, Waisman Center and School of Social Work, 1500 Highland Ave., Madison, WI 53705, USA; Susan L. Parish, Brandeis University; Roderick A. Rose, University of North Carolina; Maria Timberlake, Brandeis University; and Jamie G. Swaine, University of North Carolina.