Advertisement

Treatment Utilization Trajectories among Children with Autism Spectrum Disorder: Differences by Race-Ethnicity and Neighborhood

  • Marissa E. YinglingEmail author
  • Bethany A. Bell
  • Robert M. Hock
OriginalPaper
  • 119 Downloads

Abstract

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.

Keywords

Autism spectrum disorder Early intensive behavioral intervention Medicaid Treatment utilization Inequities 

Notes

Acknowledgments

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.

Author Contributions

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.

Funding

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.

Ethical Approval

This article does not contain any studies with human participants or animals performed by any of the authors.

References

  1. Acevedo-Garcia, D., Osypuk, T. L., McArdle, N., & Williams, D. R. (2008). Toward a policy-relevant analysis of geographic and racial/ethnic disparities in child health. Health Affairs, 27(2), 321–333.  https://doi.org/10.1377/hlthaff.27.2.321.CrossRefGoogle Scholar
  2. 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
  3. Auchincloss, A. H., Van Nostrand, J. F., & Ronsaville, D. (2001). Access to health care for older persons in the United States: Personal, structural, and neighborhood characteristics. Journal of Aging and Health, 13(3), 329–354.CrossRefGoogle Scholar
  4. 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.
  5. Bilaver, L. A., Cushing, L. S., & Cutler, A. T. (2016). Prevalence and correlates of educational intervention utilization among children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(2), 561–571.  https://doi.org/10.1007/s10803-015-2598-z.CrossRefGoogle Scholar
  6. 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.
  7. Cheema, J. R. (2014). Some general guidelines for choosing mssing data handling methods in educational research. Journal of Modern Applied Statistical Methods, 13(2), 53–75.  https://doi.org/10.22237/jmasm/1414814520.CrossRefGoogle Scholar
  8. 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.
  9. Daniels, A. M., & Mandell, D. S. (2013). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 1–15.  https://doi.org/10.1177/1362361313480277.Google Scholar
  10. 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
  11. 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
  12. Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27(1), 70–84.  https://doi.org/10.1016/j.ridd.2004.12.002.CrossRefGoogle Scholar
  13. Haitovsky, Y. (1968). Missing data in regression analysis. Journal of the Royal Statistical Society, 30(1), 67–82.Google Scholar
  14. 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
  15. Howlin, P., Magiati, I., & Charman, T. (2009). Systematic review of early intensive behavioral interventions for children with autism. American Journal on Intellectual and Developmental Disabilities, 114(1), 23–41.  https://doi.org/10.1352/2009.114:23-41.CrossRefGoogle Scholar
  16. 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/.
  17. Kim, C., Disare, K., Pfeiffer, M., Kerker, B., & McVeigh, K. (2009). Effects of individual and neighborhood characteristics on timeliness of provider designation for early intervention services in New York City. Journal of Developmental & Behavioral Pediatrics, 30(1), 38–49.CrossRefGoogle Scholar
  18. Kirby, J. B., & Kaneda, T. (2005). Neighborhood socioeconomic disadvantage and access to health care. Journal of Health and Social Behavior, 46(1), 15–31.CrossRefGoogle Scholar
  19. Krieger, N., Chen, J. T., Waterman, P. D., Rehkopf, D. H., & Subramanian, S. V. (2005). Painting a truer picture of US socioeconomic and racial-ethnic health inequalities—geocoding.pdf. American Journal of Public Health, 95(2), 312–323.CrossRefGoogle Scholar
  20. LaVeist, T. A., Nuru-Jeter, A., & Jones, K. E. (2003). The association of doctor-patient race concordance with health services utilization. Journal of Public Health Policy, 24(3/4), 312.  https://doi.org/10.2307/3343378.CrossRefGoogle Scholar
  21. Leventhal, T., & Brooks-Gunn, J. (2003). Children and youth in neighborhood contexts. Current Directions in Psychological Service, 12(1), 27–31.CrossRefGoogle Scholar
  22. Linstead, E., Dixon, D. R., French, R., Granpeesheh, D., Adams, H., German, R., … Kornack, J. (2017). Intensity and learning outcomes in the treatment of children with autism spectrum disorder. Behavior Modification, 41(2), 229–252.  https://doi.org/10.1177/0145445516667059.CrossRefGoogle Scholar
  23. 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
  24. Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153.  https://doi.org/10.1352/1934-9556-51.3.141.CrossRefGoogle Scholar
  25. 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
  26. 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.
  27. Makrygianni, M. K., & Reed, P. (2010). A meta-analytic review of the effectiveness of behavioural early intervention programs for children with Autistic Spectrum Disorders. Research in Autism Spectrum Disorders, 4(4), 577–593.  https://doi.org/10.1016/j.rasd.2010.01.014.CrossRefGoogle Scholar
  28. Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2006). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802.  https://doi.org/10.1007/s10803-006-0314-8.CrossRefGoogle Scholar
  29. Matson, J. L., & Goldin, R. L. (2014). Early Intensive Behavioral Interventions: Selecting behaviors for treatment and assessing treatment effectiveness. Research in Autism Spectrum Disorders, 8(2), 138–142.  https://doi.org/10.1016/j.rasd.2013.11.005.CrossRefGoogle Scholar
  30. McManus, B. M., Robert, S., Albanese, A., Sadek-Badawi, M., & Palta, M. (2013). Predictors of receiving therapy among very low birth weight 2-year olds eligible for Part C early intervention in Wisconsin. BMC Pediatrics, 13(1), 106.CrossRefGoogle Scholar
  31. Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11.CrossRefGoogle Scholar
  32. 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
  33. 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
  34. Reed, P., & Osborne, L. (2012). Impact of severity of autism and intervention time-input on child outcomes: Comparison across several early interventions. British Journal of Special Education, 39(3), 130–136.  https://doi.org/10.1111/j.1467-8578.2012.00549.x.CrossRefGoogle Scholar
  35. 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/.
  36. 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
  37. Shattuck, P., Grosse, S., Parish, S., & Bier, D. (2009). Utilization of a medicaid-funded intervention for children with autism. Psychiatric Services, 60(4), 549–552.  https://doi.org/10.1176/appi.ps.60.4.549.CrossRefGoogle Scholar
  38. 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
  39. 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
  40. 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.
  41. 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
  42. Stevens, G. D. (2003). Patient-provider racial and ethnic concordance and parent reports of the primary care experiences of children. The Annals of Family Medicine, 1(2), 105–112.  https://doi.org/10.1370/afm.27.CrossRefGoogle Scholar
  43. 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
  44. Thomas, K. C., Morrissey, J. P., & McLaurin, C. (2006). Use of autism-related services by families and children. Journal of Autism and Developmental Disorders, 37(5), 818–829.CrossRefGoogle Scholar
  45. 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/.
  46. Virués-Ortega, J. (2010). Applied behavior analytic intervention for autism in early childhood: Meta-analysis, meta-regression and dose–response meta-analysis of multiple outcomes. Clinical Psychology Review, 30(4), 387–399.  https://doi.org/10.1016/j.cpr.2010.01.008.CrossRefGoogle Scholar
  47. Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-VanderWeele, J. (2011). A Systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303–e1311.  https://doi.org/10.1542/peds.2011-0426.CrossRefGoogle Scholar
  48. White, K., Haas, J. S., & Williams, D. R. (2012). Elucidating the role of place in health care disparities: The example of racial/ethnic residential segregation. Health Services Research, 47(3pt2), 1278–1299.  https://doi.org/10.1111/j.1475-6773.2012.01410.x.CrossRefGoogle Scholar
  49. Williams, D. R., & Collins, C. (2001). Racial residential segregation: A fundamental cause of racial disparities in health. Public Health Reports, 116(5), 404.CrossRefGoogle Scholar
  50. Williams, D. R., & Mohammed, S. A. (2009). Discrimination and racial disparities in health: Evidence and needed research. Journal of Behavioral Medicine, 32(1), 20–47.  https://doi.org/10.1007/s10865-008-9185-0.CrossRefGoogle Scholar
  51. 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
  52. 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
  53. 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
  54. Young, W., Weckman, G., & Holland, W. (2011). A survey of methodologies for the treatment of missing values within datasets: Limitations and benefits. Theoretical Issues in Ergonomics Science, 12(1), 15–43.  https://doi.org/10.1080/14639220903470205.CrossRefGoogle Scholar
  55. Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 11.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Kent School of Social WorkUniversity of LouisvilleLouisvilleUSA
  2. 2.Hamilton College, College of Social WorkUniversity of South CarolinaColumbiaUSA

Personalised recommendations