Office of Epidemiology and Research, Division of Research

Advancing Applied MCH Research

(SDAS) Trends in Racial and Ethnic Health Care Disparities for Children with Autism and Other Developmental Disabilities

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Project Number: R40 MC 26192
Grantee: Brandeis University
Department/Center: Lurie Inst for Disability Policy/Heller School
Project Date: 9/1/2013

Final Report


Principal Investigator

Susan Parish, PhD
Professor and Director, Lurie Institute
415 South Street, MS 035
Waltham, MA  02453-2728
Phone: 781-736-3928


  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)


  • African American
  • Hispanic/Latino


Numerous US policy objectives call for research and interventions to reduce racial/ethnic health care disparities. However, few studies have addressed this important issue for children in general, and only three studies have examined racial/ethnic health care disparities for children with autism and other developmental disabilities. In our previous research, we found that there were significant disparities in the health care access, health care quality and service utilization of Black and Latino children with autism and other developmental disabilities, and the situation was particularly poor for Latino children. Although our research has established that these disparities exist, little other evidence exists about the general trend in such disparities. Is the system of care improving for Black and Latino children with autism and other developmental disabilities? To address this overarching questions, the proposed study has these aims: (1) To describe longitudinal population trends and correlates of racial and ethnic health care disparities of Black and Latino children with autism/DD; and (2) To identify longitudinal trends and correlates of health care disparities among Latino children of Spanish- and English-speaking parents. The three major outcomes we will analyze include: (a) health care access; (b) health care service utilization; and (c) health care quality. It is important to examine longitudinal population changes in health care access, service utilization and quality of care over the past 10 years because of several major initiatives that have been implemented to reduce racial and ethnic health care disparities, as well as improve the care of children with autism and other special health care needs. Taken on balance, we hypothesize that these initiatives will have improved the health care access, service utilization and quality of care received by Black children with autism/DD. However, the lack of insurance of Latino children, and the language barriers faced by many Latino families leads us to hypothesize that significant gains were not realized over the past decade for these children. Additionally, Latino immigrants are more likely to face language barriers. The study will specifically determine whether patterns of racial/ethnic disparities persist after controlling for socioeconomic status, severity of impairment, and health insurance status. Identifying trends in racial and ethnic disparities in the health care of vulnerable children with autism and other developmental disabilities is imperative as a first step in developing interventions that effectively promote optimal development of vulnerable children with autism. To conduct these analyses, we will use existing data from the National Survey of Children with Special Health Care Needs (2005/06 and 2010/11) and the National Survey of Children’s Health (2003, 2007, and 2012). Study results will be published in two or more peer-reviewed journals, presented at four scientific or policy meetings, and disseminated via fact sheets and podcasts.




Autism, Access to Health Care , Developmental Disabilities, Health Disparities , Health Care Utilization , Immigrant Populations, Health Care Quality, Special Health Care Needs

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