Experiences of Parents and Providers of ASD Services in Underserved California Communities

Background:  Ethnically diverse children with autism spectrum disorder (ASD) receive services at a later age and receive a different complement of services than White children (Mandell, Listerus, Levy, & Pinto-Martin, 2002; Levy et al., 2003). In California, families of children with ASD with Medi-Cal or other public insurance are less likely to use services considered medically necessary compared to families whose children were covered by private insurance (Thomas et al. 2007). Additionally, minority groups receive fewer services and significantly lower expenditures from California Regional Centers than those from White families (Harrington & Kang, 2008). These data suggest that state policies and socio-economic contexts impact families’ access to autism services. The present study utilizes data collected from focus groups in California to investigate barriers minority and low-resource families experience when accessing autism-specific services in the state.

Objectives:  To identify barriers and challenges facing under-resourced California families as they seek an ASD diagnosis and/or services.

Methods:  Eight focus groups (4 provider, 4 parent) and four interviews (3 parent, 1 provider) conducted statewide were analyzed (N=62). Participants were recruited across regions in Northern and Southern California. Parents were eligible to participate if they had a child recently diagnosed with ASD and if they received some form of government assistance. Special efforts were made to recruit parents who identified as a racial or ethnic minority. Providers were eligible if they worked with low-resource or minority families with children with ASD. Transcripts were coded for eight major codes(e.g., barriers, cultural differences, knowledge). Two raters coded each transcript using Dedoose, and 30% of transcripts were coded across focus group collection site to ensure reliability.

Results:  Systemic issues and cultural stigma emerged as major barriers to access experienced by under-resourced families. A lack of available quality services and programs was most prominent. Participants reported a need for culturally sensitive, bilingual therapists. Families also expressed frustration over biased practices, such as providers refusing to go into certain homes and neighborhoods, and different services offered to families by education level. Another systemic problem was the funding for autism services and therapies through medical insurance. This introduced additional barriers for families that contributed to long delays in services, and increased financial burdens for families (e.g., insurance co-pays). Navigating the system was a major source of concern for families, including being overwhelmed with scheduling and intrusions to the home environment. Finally, cultural denial was prevalent in both parent and provider conversations about stigma associated with disability. Respondents referenced the absence of vocabulary to describe autism in their native language, as well as the influence of gender roles within the family unit.

Conclusions:  These findings highlight several systemic barriers and challenges that low-resource, culturally diverse families face when accessing ASD-specific services in California. Policies and procedures within California that negatively impact these communities warrant further investigation in order to inform efforts to improve access to care.