Date Presented 4/1/2017
This ethnography of 12 Latino families of children with autism reveals that parents felt they must “battle” systems of care to get publicly funded services for their children. Findings show the need for greater family support in policy and practice to reduce service disparities for Latino children.
Primary Author and Speaker: Amber Angell
PURPOSE: The purpose of this study is to understand Latino parents’ experiences obtaining and managing their children’s autism services in Los Angeles County. While large-scale studies have shown that Latino children with autism in the United States experience disparities in rates of autism services compared with White children (Broder-Fingert, Shui, Pulcini, Kurowski, & Perrin, 2013; Zuckerman et al., 2014), their parents’ experiences of these disparities are not well understood. This study asked, What challenges and opportunities do Latino parents face as they engage with systems of care to obtain autism services for their children? Findings give practitioners important insights into the challenges Latino parents may face in obtaining autism services for their children.
DESIGN AND METHOD: This dissertation research is a 12-mo ethnographic study of 12 bilingual Latino families of children with autism living in Los Angeles County. Ethical approval was obtained through the University of Southern California Health Sciences Review Board. Families were recruited through a regional center in Los Angeles County. The regional center mailed study recruitment letters to a random computer-generated list of families who met recruitment criteria. Interested parents contacted the author by phone or email. The study was carried out in two phases. In Phase 1, two audio-recorded narrative interviews were conducted with 12 families (19 parents, one grandmother) to understand their experiences obtaining services for their children. After Phase 1, six families were selected using heterogeneity sampling and invited to participate in Phase 2; all invited families chose to participate. In Phase 2, narrative interviews and participant observation were carried out with six families (11 parents) in home, clinic, school, and community contexts. Children’s health records (Angell & Solomon, 2014) provided triangulation of data to further understand parents’ narratives. NVivo 10 software (QSR International, Doncaster, Victoria, Australia) was used for coding, which used a narrative approach of keeping stories intact. Analysis used an iterative process, moving between parents’ stories and the broader sociocultural, political, and economic context.
RESULTS: Some parents engaged in “battles” with systems of care, while others chose not to fight, fearing that professionals might mistreat their children in retaliation. Despite these differences in parents’ experiences, they found that publicly funded services that their children had a legal right to on the basis of their autism diagnosis were not given to the children unless their parents “fought” for them. The Latino parents in the study faced a double standard: They could fight and possibly “win” services but often met even more resistance from administrators, or they could choose not to fight to ensure that professionals “liked” them and would not mistreat their children, at the cost of not “winning” the services they felt their children needed.
CONCLUSION: Like Magasi (2012), I argue that parents’ work navigating systems of care is a complex but often invisible occupation that has been given little attention in occupational therapy. The double standard that the parents faced is best understood within the sociocultural, political, and economic context, which includes documented service disparities for Latino children across systems of care and policies of austerity that influence how public services are distributed.
IMPACT STATEMENT: These findings have the potential to inform policy that supports parents’ efforts to obtain publicly funded autism services for their children. In addition, the findings can guide occupational therapists who work with children with autism to better understand families’ and caregivers’ health care experiences and to support their needs (Lawlor & Mattingly, 2014).
References
Angell, A. M., & Solomon, O. (2014). The social life of health records: Understanding families’ experiences of autism. Social Science and Medicine, 117, 50–57. https://doi.org/10.1016/j.socscimed.2014.07.020
Broder-Fingert, S., Shui, A., Pulcini, C. D., Kurowski, D., & Perrin, J. M. (2013). Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics, 132, 94–100. https://doi.org/10.1542/peds.2012-3886
Lawlor, M. C., & Mattingly, C. (2014). Family perspectives on occupation, health, and disability. In B. A. B. Schell, G. Gillen, & M. E. Scaffa (Eds.), Willard and Spackman’s occupational therapy (12th ed., pp. 150–162). Baltimore: Lippincott Williams & Wilkins.
Magasi, S. (2012). Negotiating the social service systems: A vital yet frequently invisible occupation. OTJR: Occupation, Participant and Health, 32(1 Suppl.), S25–S33. https://doi.org/10.3928/15394492-20110906-03
Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14, 301–308. https://doi.org/10.1016/j.acap.2013.12.004
