Identifying the Needs of Parents and Providers of Children & Youth with Autism Spectrum Disorder in Rural Areas
Wednesday, April 26, 2023
12:00 PM - 1:00 PM
The purpose of this study was to learn and describe the barriers and unmet needs experienced by parents and providers providing support to children with ASD in rural communities through a life course perspective. Eight parents and eight service providers participated in the focus groups from rural counties in Illinois, United States. Parents discussed barriers to accessing and coordinating services, from ASD diagnosis to transition and future planning. Overall themes highlighted the scarcity of qualified professionals trained to work with and serve children and youth with ASD and the resourcefulness caregivers and providers need to fill the gaps in education, health care, transition, and future planning. We present recommendations shared by parents and providers on ways to improve access to services and support for families in rural areas.
Sandra Vanegas, PhD is a developmental psychologist and a research assistant professor at the Steve Hicks School of Social Work at the University of Texas at Austin. She also serves as the Clinical Training Director for the Autism Consortium of Texas (ACT) LEND and as the Director of Research for the Texas Center for Disability Studies. She is an IL LEND alum, completing the LEND postdoctoral fellowship in 2016. Her research focuses on identifying and addressing health and educational disparities that impact children and youth with developmental disabilities from racially/ethnically and linguistically diverse backgrounds. She is currently leading an RCT to examine the efficacy of the ASD Screening and Parent Engagement (ASPEN) Program, a culturally informed parent-mediated intervention for families in low-resource households.
Yovia Xu, PhD, MSW is a clinical assistant professor and the health disparity course director at the University of Illinois College of Medicine (UICOM) Rockford campus. She is a LEND alum, and earned her PhD in disability studies from UIC. She also has a master’s in social work from the University of Chicago. At UICOM, Yovia teaches M1 and M2 students topics ranging from health equity, population health, and health humanities. She also lectures on autism and neurodevelopmental disorders for Rockford campus’ family medicine residents. Her research centers around health equity, autism and other disabilities.