Funded Projects

(SDAS) Racial and Ethnic Disparities in Children's Early Diagnostic and Health Services

Grantee: Brandeis University
Principal Investigator: Susan Parish
Project Number: R40MC27472
Project Date: 9/1/2014

Age group(s)

• Perinatal/Infancy (0-12 months)
• Toddlerhood (13-35 months)
• Early Childhood (3-5 years)
• Middle Childhood (6-11 years)
• Adolescence (12-18 years)

Abstract

There is clear evidence that racial and ethnic health care disparities are persistent in the United States and this represents a major US public health problem. However, little is known about racial and ethnic health care disparities for children with autism and other developmental disabilities (autism/DD). Researchers have not examined racial and ethnic disparities in pathways to care, which includes several stages of help-seeking, including parental perceptions of problems, use of primary care services, recognition within primary care, and referral to or use of specialty care services among children with autism/DD. The purpose of this study is to examine racial and ethnic disparities in pathways to diagnosis and early service utilization among children with autism/DD. Our goal is to assess whether there are significant differences in pathways to care among racial and ethnic minority children with autism/DD, informed by Goldberg and Huxley's pathways to care model. Sayal applied this model to specialist health service use of children with mental health problems and delineated several stages of helpseeking: parental perception of problems, use of primary care services, recognition within primary care, and referral to or use of specialist health services. For Aim 1, Latino and Black children with autism/DD will be compared to non-Latino White children with autism/DD in relation to stage 1 (i.e., parents' initial perception of child's problems). For Aims 2 & 3, Latino and Black children with autism/DD will be compared to non-Latino White children with autism/DD in relation to stage 2 (i.e., primary care service use including access to diagnosis and health care providers' responsiveness to parents' concerns). For Aim 4, related to stage 3 (i.e., early specialty care service use), Latino and Black children with autism/DD will be compared to non-Latino White children with autism/DD in the age at first use, number and type of specialty care services. To address these four aims, we will analyze data from two national surveys: the National Survey of Children with Special Health Care Needs for 2009/10; and the Survey of Pathways to Diagnosis and Services for 2011. The study population consists of school-aged children (6-17 years) with autism/DD (N=3,518). Parent respondents in these datasets were all adults aged 18 years or older. We will conduct descriptive and bivariate analyses, and multivariate modeling to describe the extent and correlates of racial and ethnic disparities in pathways to care. All analyses will be conducted with appropriate weighting and variance adjustment, using Stata.

Publications

Listed is descending order by year published.

Magaña, S., Parish, S. L., and Son, E. (2016) Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder. Journal of Intellectual Disability Research, 60: 424– 434. doi: 10.1111/jir.12293.

Magaña S, Parish SL, and Son E. Have Racial and Ethnic Disparities in the Quality of Health Care Relationships Changed for Children With Developmental Disabilities and ASD?. American Journal on Intellectual and Developmental Disabilities. 2015;120(6)504-513.