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.
This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N = 4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with autism and other developmental disabilities had a consistent pattern of worse health care access, utilization, and quality. We then test mediation models to determine if health care quality mediates the relationship between ethnicity and health care utilization disparities. Three of four quality indicators (provider does not spend enough time with child, provider is not culturally sensitive, and provider does not make parent feel like a partner) were significant mediators. These analyses suggest that interventions targeted at improving providers' cultural sensitivity and behavior during the clinical encounter may reduce disparities in the health care utilization of Latino children with autism and other developmental disabilities.
This study investigated families' experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the $25,000 annual allocation. Key findings included families' preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents' placed on the personalities and interpersonal skills of providers. Parents' descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children's HCBS autism waiver program.
Our findings highlight the importance of establishing a collaborative partnership with waiver families in promoting family well-being. These results suggest that training and/or resources that foster team building and communication can positively impact family functioning among families with young children with autism.
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