White-black disparities in family-centered care among children with autism in the United States: evidence from the NS-CSHCN 2005-2006

Abstract

Objectives: The aim of this study was to compare the reported receipt of family-centered care between parents of white and black children with autism spectrum disorders (ASD) in the United States, and to disentangle the associations of race and ASD on different aspects of family-centered care.

Methods: Parents of 35,386 children, aged 0 to 17 years, were surveyed by the National Survey of Children with Special Health Care Needs (NS-CSHCN) 2005-2006. Autism was defined by the question, "To the best of your knowledge, does [child] currently have autism or autism spectrum disorder, that is, ASD?" Family-centered care was measured with 5 key indicators on a 4-point Likert scale. Univariate and multivariate analyses were used, with adjustment for the complex sampling design.

Results: The prevalence of autism in this sample was 5.4% (n = 1869). We found that, among children with SHCN but no ASD, more white parents than black parents reported receiving family-centered care. Further, fewer parents of both white children and black children with ASD reported receiving family-centered care compared with those with a child who had special needs other than ASD. Lastly, among parents with a child with ASD, being black was associated with lower reporting of family-centered care for 3 of 5 items. In multivariate analyses, black parents with a child with ASD had 2 to 5 times greater odds of not reporting family-centered care on each item compared with white parents without a child with ASD.

Conclusion: Targeted efforts are needed to improve family-centered care for parents with a child with ASD, and particularly for black families.