Services for Children with Autism Spectrum Disorder: Comparing Rural and Non-Rural Communities.

This study compared service use for families of children with autism spectrum disorder (ASD) who live in rural vs. non-rural areas. Participants were 415 caregivers of children with ASD, of whom 101 (23.7%) lived in rural areas of a southeastern state. Participants completed an online survey regarding access and quality of different services. For rural families, the most common services that were recommended but not implemented included behavior support services and parent support groups. Rural families also had to travel longer distances and for more time to access these services. For behavior support services, rural (vs. non-rural) families had lower perceptions of effectiveness. In addition, a map showing locations of all of the state’s Board Certified Behavior Analysts (BCBA) and Speech Language Pathologists (SLP) revealed that, compared to SLPs, BCBAs were present in a lower percentage of rural counties. Implications for practice and future research are discussed. Across the United States, the number of children diagnosed with autism spectrum disorder (ASD) has risen drastically. Currently, one in 68 children have been identified with ASD (CDC, 2014). Due to the increasing prevalence of ASD, families and service providers require reliable information regarding relevant services. We know that children with ASD utilize a combination of services, averaging three or more (CDC, 2012; Ruble & McGrew, 2007; Thomas, Morrissey, & McLaurin, 2007). Even though children with ASD require many services, families often encounter difficulty accessing and implementing recommended services. Warren, Vehorn, Dohrmann, Newsom, and Taylor (2013) found that only a minority of families reported successful implementation of different services such as applied behavior analysis (ABA) services, sleep evaluations, and genetic testing. Although many parents of children with ASD find it difficult to access quality services, greater challenges may be experienced by families in rural areas. In general, rural parents reported decreased access to services, and the services themselves were considered to be less effective (Chen, Liu, Su, Huang, & Lin, 2007; Mandell, Novak, & Zubritsky, 2005). Other studies found that rural families have less access to specialized personnel and services, such as mental health services (Hendryx, 2008; Knapcyzk, Chapman, Rodes, & Chung, 2001; Murphy & Ruble, 2012). In addition, some services may seem more difficult Support for this research was provided by the Maternal and Child Health Bureau of Health Resources and Service Administration’s (HRSA; grant HRSA-H6MMC22711) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (P30 HD15052). We would like to thank members of the Tennessee ACT Early Summit Team for help in promoting this survey, with special thanks to Carol Westlake, Cory Bradfield, John Shouse, and, Drs. Terri Urbano, and Zachary Warren. The help of the staff of the Vanderbilt Kennedy Center (especially Dr. Jan Rosemergy) and of the Tennessee Disability Coalition is greatly appreciated, as are comments on an earlier draft of this manuscript by Pablo Juarez. Correspondence concerning this article should be addressed to Maria P. Mello, Department of Special Education, Peabody College, Vanderbilt University, Peabody Box 228, 230 Appleton Place, Nashville, TN 37203. E-mail: Maria.p.mello@vanderbilt.edu Education and Training in Autism and Developmental Disabilities, 2016, 51(4), 355–365 © Division on Autism and Developmental Disabilities ASD Rural and Non-Rural Services / 355 to access than others. In fact, parents of children with ASD in both rural and non-rural areas reported trouble accessing trained professionals and accessing services overall, but the task of finding trained professionals and physicians was significantly more difficult for rural families (Murphy & Ruble, 2012). Similarly, while parents in rural and non-rural areas expressed a higher need for social skills training, speech language therapy, and behavior management services, rural parents expressed an especially high need for behavior management services (Murphy & Ruble, 2012). Rural parents not only reported difficulty accessing services, but rural teachers also reported fewer resources and less access to professional development. Overall, there were fewer teachers and specialized services available in rural schools. For example, compared to 80% of non-rural teachers, only 58% of rural teachers reported using ABA practices at school (Pennington, Horn, & Berrong, 2009). ABA services are often used for skill acquisition and behavior support for children with ASD. In a sample from a southeastern state, ABA was one of the most used services for families of children with ASD (Dymond, Gilson, & Myrand, 2007). Further, Ruble and McGrew (2007) found that in-home behavior therapy was rated by parents as the most effective intervention for children with ASD. Moreover, the National Standards Project Report from the National Autism Center (NAC; 2009) connected three of the 11 established evidence-based practices for children with ASD specifically to ABA. In a 2014 report, the National Professional Development Center on ASD reported that most evidence-based practices for children with ASD contained fundamental ABA techniques (Wong et al., 2014). Given that services based in ABA may be among the most effective for children with ASD (NAC, 2009; Ruble & McGrew, 2007; Wong et al., 2014), these services may constitute an especially important need for rural families. Although differences in many services may exist between families living in rural versus non-rural areas, past studies have generally not focused on the availability of specific services for children with ASD. In addition, while there are various definitions of rural and nonrural, for this study we considered metropolitan areas and any outlying counties of the metro area non-rural based on US Census metropolitan and micropolitan areas (US Census, 2013). This study examined these issues for specific services by answering the following research questions: (1) What services are recommended and available to families in rural compared to non-rural areas? (2) Do rural versus non-rural parents differ in their levels of satisfaction with the services that they and their children receive? (3) Do rural families differ in their respective perceptions of effectiveness of different services? and (4) Are there differences in distance and time traveled between rural and non-rural participants for difficult-to-access services?