Treatment Utilization Trajectories among Children with Autism Spectrum Disorder: Differences by Race-Ethnicity and Neighborhood
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Health coverage of early intensive behavioral intervention (EIBI) for children with autism spectrum disorder is expanding. Yet there is no longitudinal research on patterns of or inequities in utilization of EIBI. We integrated state administrative records with Medicaid and Census data for children enrolled in an EIBI Medicaid waiver (N = 730) to identify and describe the type and prevalence of treatment utilization trajectories, and to examine the association between trajectory types and (a) child race-ethnicity and (b) neighborhood racial composition, poverty, affluence, and urbanicity. We identified four utilization trajectories (Low, Low-Moderate, Moderate, and High users). Race-ethnicity and neighborhood affluence were associated with trajectory membership. As coverage expands, policy makers should consider strategies to improve overall treatment utilization and enhance equity.
KeywordsAutism spectrum disorder Early intensive behavioral intervention Medicaid Treatment utilization Inequities
We acknowledge the South Carolina Department of Disabilities and Special Needs and the University of South Carolina’s Institute for African American Research for their support of this work. The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the South Carolina Department of Disabilities and Special Needs.
The first author conducted the majority of this study while at the University of South Carolina and completed the study at the University of Louisville. MY conceived of the study, led its design and coordination, and drafted the manuscript; BB advised MY on conceptualization, statistical analyses and interpretation, and provided feedback on manuscript drafts, RH advised MY on conceptualization and data collection and provided feedback on subsequent manuscript drafts. All authors read and approved the final manuscript.
This study was funded in part by the Institute for African American Research at the University of South Carolina.
Compliance with Ethical Standards
Conflict of interest
Dr. Marissa E. Yingling declares that she has no conflict of interest. Dr. Bethany A. Bell declares that she has no conflict of interest. Dr. Robert M. Hock declares that he has no conflict of interest.
This article does not contain any studies with human participants or animals performed by any of the authors.
- Andersen, R. M., Davidson, P. L., & Baumeister. (2013). Improving access to care. In G. F. Kominski (Ed.), Changing the U.S. Health Care System: Key Issues in Health Services Policy and Management (pp. 33–64). New York: Wiley.Google Scholar
- Autism Speaks. (2014). The Affordable Care Act and Autism. Retrieved from https://www.autismspeaks.org/sites/default/files/docs/gr/aca_ehb_11.2014.pdf.
- Centers for Medicare and Medicaid Services. (2014). Medicaid and CHIP FAQs: Services to Address Autism. Department of Health and Human Services. Retrieved from http://www.medicaid.gov/federal-policy-guidance/downloads/faq-09-24-2014.pdf.
- Cooper, L. A., Powe, N. R., & Fund, C. (2004). Disparities in patient experiences, health care processes, and outcomes: the role of patient-provider racial, ethnic, and language concordance. Commonwealth Fund New York, NY. Retrieved from http://www.commonwealthfund.org/programs/minority/cooper_raceconcordance_753.pdf.
- Florence, J. E., Pack, R., Southerland, J., & Wykoff, R. (2012). The depth of rural health disparities in America: The ABCDEs. In R. A. Crosby (Ed.), Rural Populations and Health (p. 51).Google Scholar
- Granpeesheh, D., Dixon, D. R., Tarbox, J., Kaplan, A. M., & Wilke, A. E. (2009). The effects of age and treatment intensity on behavioral intervention outcomes for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3(4), 1014–1022. https://doi.org/10.1016/j.rasd.2009.06.007.CrossRefGoogle Scholar
- Haitovsky, Y. (1968). Missing data in regression analysis. Journal of the Royal Statistical Society, 30(1), 67–82.Google Scholar
- Hallam, R. A., Rous, B., Grove, J., & LoBianco, T. (2009). Level and intensity of early intervention services for infants and toddlers with disabilities: The impact of child, family, system, and community-level factors on service provision. Journal of Early Intervention, 31(2), 179–196. https://doi.org/10.1177/1053815109331914.CrossRefGoogle Scholar
- Interagency Autism Coordinating Committee (IACC). (2017). 2016–2017 Interagency Autism Coordinating Committee Strategic Plan For Autism Spectrum Disorder. U.S. Department of Health and Human Services Interagency Autism Coordinating Committee. Retrieved from https://iacc.hhs.gov/publications/strategic-plan/2017/.
- Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental & Behavioral Pediatrics, 29(3), 152–160.CrossRefGoogle Scholar
- Magaña, S., Parish, S. L., Rose, R. A., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50(4), 287–299. https://doi.org/10.1352/1934-9556-50.4.287.CrossRefGoogle Scholar
- Maglione, M. A., Kadiyala, S., Kress, A. M., Hastings, J. L., & O’Hanlon, C. E. (2016). TRICARE Applied Behavior Analysis (ABA) Benefit: Comparison with Medicaid and Commercial Benefits. Santa Monica, CA: RAND Corporation. Retrieved from https://www.rand.org/pubs/research_reports/RR1334.html.
- Parish, S., Magaña, S., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of Latino children with autism and other developmental disabilities: Quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117(4), 304–315. https://doi.org/10.1352/1944-7558-117.4.304.CrossRefGoogle Scholar
- Perry, A., Cummings, A., Dunn Geier, J., Freeman, N. L., Hughes, S., LaRose, L., Managhan, T., Reitzel, J.A., Williams, J. (2008). Effectiveness of intensive behavioral intervention in a large, community-based program. Research in Autism Spectrum Disorders, 2(4), 621–642. https://doi.org/10.1016/j.rasd.2008.01.002.CrossRefGoogle Scholar
- Reichow, B., Barton, E., Boyd, B., & Hume, K. (2014). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD): A systematic review. Campbell Systematic Reviews. Retrieved from http://www.campbellcollaboration.org/lib/project/338/.
- Reichow, B., & Wolery, M. (2008). Comprehensive synthesis of early intensive behavioral interventions for young children with Autism based on the UCLA Young Autism Project Model. Journal of Autism and Developmental Disorders, 39(1), 23–41. https://doi.org/10.1007/s10803-008-0596-0.CrossRefGoogle Scholar
- Shen, M. J., Peterson, E. B., Costas-Muñiz, R., Hernandez, M. H., Jewell, S. T., Matsoukas, K., & Bylund, C. L. (2018). The effects of race and racial concordance on patient-physician communication: A systematic review of the literature. Journal of Racial and Ethnic Health Disparities, 5(1), 117–140. https://doi.org/10.1007/s40615-017-0350-4.CrossRefGoogle Scholar
- Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2014). Longitudinal change in the use of services in autism spectrum disorder: Understanding the role of child characteristics, family demographics, and parent cognitions. Autism, 18(4), 433–446. https://doi.org/10.1177/1362361313476766.CrossRefGoogle Scholar
- South Carolina Department of Disabilities and Special Needs. (2012). PDD parent handbook. Retrieved from http://www.ddsn.sc.gov/consumers/Documents/PDD%20Parent%20Handbook%20CS6.pdf.
- Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (2005). Vineland-II adaptive behavior scales: Survey forms manual. Circle Pines: American Guidance Service.Google Scholar
- Strauss, K., Vicari, S., Valeri, G., D’Elia, L., Arima, S., & Fava, L. (2012). Parent inclusion in early intensive behavioral intervention: The influence of parental stress, parent treatment fidelity and parent-mediated generalization of behavior targets on child outcomes. Research in Developmental Disabilities, 33(2), 688–703. https://doi.org/10.1016/j.ridd.2011.11.008.CrossRefGoogle Scholar
- United States Department of Agriculture. (2016). Rural–urban commuting area codes. Retrieved from https://www.ers.usda.gov/data-products/rural-urban-commuting-area-codes/.
- World Health Organization (WHO). (2013). Comprehensive and coordinated efforts for the management of autism spectrum disorders (133rd session No. EB133/4). Geneva: World Health Organization.Google Scholar
- Yingling, M. E., Hock, R. M., & Bell, B. A. (2018a). Time-lag between diagnosis of autism spectrum disorder and onset of publicly-funded EIBI: Do race-ethnicity and neighborhood matter? Journal of Autism and Developmental Disorders, 48(2), 561–571. https://doi.org/10.1007/s10803-017-3354-3.CrossRefGoogle Scholar
- Yingling, M. E., Hock, R. M., Cohen, A., & McCaslin, E. (2018b). Perceived challenges to treatment utilization in a publicly-funded behavioral intervention program for children with autism spectrum disorder. International Journal of Developmental Disabilities, 64(4–5), 272–282.Google Scholar