Abstract
Using the 2008–2013 Medicaid Analytic eXtract files, this retrospective cohort study was to evaluate the effect of Medicaid home and community-based services (HCBS) waiver programs on emergency department (ED) utilizations among youth with autism spectrum disorder (ASD). Our study showed that the annual ED utilization rates were 13.5% and 18.8% for individuals on autism specific and intellectual and developmental disabilities (IDD) waivers respectively, vs. 28.5% for those without a waiver. Multivariable logistic regression showed that, compared to no waiver, autism specific waivers (adjusted odds ratio: 0.62; 95% Confidence Interval: [0.58–0.66]) and IDD waivers (0.65; [0.64–0.66]) were strongly associated with reduced ED. These findings suggest that HCBS waivers are effective in reducing the incidence of ED visits among youth with ASD.
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Ames, J. L., Massolo, M. L., Davignon, M. N., Qian, Y., & Croen, L. A. (2020). Healthcare service utilization and cost among transition-age youth with autism spectrum disorder and other special healthcare needs. Autism. https://doi.org/10.1177/1362361320931268
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders, 5th edition. American Psychiatric Association.
Burke, J. P., Jain, A., Yang, W., Kelly, J. P., Kaiser, M., Becker, L., & Newschaffer, C. J. (2014). Does a claims diagnosis of autism mean a true case? Autism, 18(3), 321–330. https://doi.org/10.1177/1362361312467709
Callaghan, T., & Sylvester, S. (2019). Autism spectrum disorder, politics, and the generosity of insurance mandates in the United States. PLoS ONE, 14(5), e0217064. https://doi.org/10.1371/journal.pone.0217064
Centers for Medicare & Medicaid Services. (2021). Ambulatory Care: Emergency Department (ED) Visits: Ages 0 to 19. Available at: https://www.medicaid.gov/state-overviews/scorecard/ambulatory-care-emergency-department-visits/index.html
Choi, K. R., Knight, E. A., Stein, B. D., & Coleman, K. J. (2020). Autism insurance mandates in the US: comparison of mandated commercial insurance benefits across states. Maternal and Child Health Journal, 24(7), 894–900. https://doi.org/10.1007/s10995-020-02950-2
Cooper, R. E. (2017). Waiting Lists and Medicaid Home and Community-Based Services. National Association of State Directors of Developmental Disabilities Services (NASDDDS). November, 2017.
Eiken, S., Burwell, B., Gold, L., Sredl, K., & Saucier, P. (2014). Medicaid Expenditures for Section 1915(C) Waiver Programs in FFY 2012. Centers for Medicare & Medicaid Services.
Elder, J. H., Kreider, C. M., Brasher, S. N., & Ansell, M. (2017). Clinical impact of early diagnosis of autism on the prognosis and parent-child relationships. Psychology Research and Behavior Management, 10, 283–292. https://doi.org/10.2147/PRBM.S117499
Enard, K. R., & Ganelin, D. M. (2013). Reducing preventable emergency department utilization and costs by using community health workers as patient navigators. Journal of Healthcare Management, 58(6), 412–427
Eskow, K. G., Chasson, G. S., & Summers, J. A. (2015). A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program. Journal of Autism and Developmental Disorders, 45(3), 626–635. https://doi.org/10.1007/s10803-014-2217-4
Eskow, K. G., Chasson, G. S., & Summers, J. A. (2019). The role of choice and control in the impact of autism waiver services on family quality of life and child progress. Journal of Autism and Developmental Disorders, 49(5), 2035–2048. https://doi.org/10.1007/s10803-019-03886-5
Eskow, K. G., Pineles, L., & Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28–35. https://doi.org/10.1111/j.1741-1130.2011.00284.x
Estes, A., Munson, J., Rogers, S. J., Greenson, J., Winter, J., & Dawson, G. (2015). Long-term outcomes of early intervention in 6-Year-Old children with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 54(7), 580–587. https://doi.org/10.1016/j.jaac.2015.04.005
Green, J., Kroll, L., Imrie, D., Frances, F. M., Begum, K., Harrison, L., & Anson, R. (2001). Health gain and outcome predictors during inpatient and related day treatment in child and adolescent psychiatry. Journal of the American Academy of Child and Adolescent Psychiatry, 40(3), 325–332. https://doi.org/10.1097/00004583-200103000-00012
Kang-Yi, C. D., Locke, J., Marcus, S. C., Hadley, T. R., & Mandell, D. S. (2016). School-based behavioral health service use and expenditures for children with autism and children with other disorders. Psychiatric Services (washington, D. C.), 67(1), 101–106. https://doi.org/10.1176/appi.ps.201400505
Kitchener, M., Carrillo, H., & Harrington, C. (2003). Medicaid community-based programs: a longitudinal analysis of state variation in expenditures and utilization. Inquiry, 40(4), 375–389. https://doi.org/10.5034/inquiryjrnl_40.4.375
Koegel, L. K., Koegel, R. L., Ashbaugh, K., & Bradshaw, J. (2014). The importance of early identification and intervention for children with or at risk for autism spectrum disorders. International Journal of Speech-Language Pathology, 16(1), 50–56. https://doi.org/10.3109/17549507.2013.861511
Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339. https://doi.org/10.1352/0047-6765(2003)41%3c329:ATSMCF%3e2.0.CO;2
LaClair, M., Mandell, D. S., Dick, A. W., Iskandarani, K., Stein, B. D., & Leslie, D. L. (2019). The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism. Health Services Research, 54(4), 912–919. https://doi.org/10.1111/1475-6773.13176
Landa, R. J. (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry, 30(1), 25–39. https://doi.org/10.1080/09540261.2018.1432574
Lee McIntyre, L., & Zemantic, P. K. (2017). Examining services for young children with autism spectrum disorder: parent satisfaction and predictors of service utilization. Early Child Educ J, 45(6), 727–734. https://doi.org/10.1007/s10643-016-0821-y
Leichtman, M., Leichtman, M. L., Barber, C. C., & Neese, D. T. (2001). Effectiveness of intensive short-term residential treatment with severely disturbed adolescents. American Journal of Orthopsychiatry, 71(2), 227–235
Leslie, D. L., Iskandarani, K., Dick, A. W., Mandell, D. S., Yu, H., Velott, D., & Stein, B. D. (2017a). The Effects of medicaid home and community-based services waivers on unmet needs among children with autism spectrum disorder. Medical Care, 55(1), 57–63. https://doi.org/10.1097/MLR.0000000000000621
Leslie, D. L., Iskandarani, K., Velott, D. L., Stein, B. D., Mandell, D. S., Agbese, E., & Dick, A. W. (2017b). Medicaid waivers targeting children with autism spectrum disorder reduce the need for parents to stop working. Health Aff (millwood), 36(2), 282–288. https://doi.org/10.1377/hlthaff.2016.1136
Liu, G., Pearl, A. M., Kong, L., Brown, S. L., Ba, D., Leslie, D. L., & Murray, M. J. (2019). Risk factors for emergency department utilization among adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-04166-y
Locke, J., Kang-Yi, C. D., Pellecchia, M., Marcus, S., Hadley, T., & Mandell, D. S. (2017). Ethnic disparities in school-based behavioral health service use for children with psychiatric disorders. Journal of School Health, 87(1), 47–54. https://doi.org/10.1111/josh.12469
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9
MACPAC. (2020). State Management of Home- and Community-Based Services Waiver Waiting Lists. Medicaid and CHIP Payment and Access Commission.
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., & Dietz, P. M. (2020). Revalence of autism spectrum disorder among children aged 8 years — Autism and developmental disabilities monitoring network, 11 Sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–12
Mandell, D. S., Morales, K. H., Xie, M., Lawer, L. J., Stahmer, A. C., & Marcus, S. C. (2010). Age of diagnosis among Medicaid-enrolled children with autism, 2001–2004. Psychiatric Services (washington, D. C.), 61(8), 822–829. https://doi.org/10.1176/ps.2010.61.8.822
Mandell, D. S., Xie, M., Morales, K. H., Lawer, L., McCarthy, M., & Marcus, S. C. (2012). The interplay of outpatient services and psychiatric hospitalization among Medicaid-enrolled children with autism spectrum disorders. Archives of Pediatrics and Adolescent Medicine, 166(1), 68–73. https://doi.org/10.1001/archpediatrics.2011.714
Mehta, N. K., Lee, H., & Ylitalo, K. R. (2013). Child health in the United States: recent trends in racial/ethnic disparities. Social Science and Medicine, 95, 6–15. https://doi.org/10.1016/j.socscimed.2012.09.011
Merryman, M. B., Miller, N. A., Shockley, E., Eskow, K. G., & Chasson, G. S. (2015). State adoption of Medicaid 1915(c) waivers for children and youth with Autism Spectrum Disorder. Disability and Health Journal, 8(3), 443–451. https://doi.org/10.1016/j.dhjo.2015.03.003
Miller, N. A., Merryman, M. B., Eskow, K. G., & Chasson, G. S. (2016). State design and use of medicaid 1915(c) Waivers and related benefits to provide services to children and youth with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 121(4), 295–311. https://doi.org/10.1352/1944-7558-121.4.295
Musumeci, M., Chidambaram, P., & Watts, M. O. (2019). Key Questions About Medicaid Home and Community-Based Services Waiver Waiting Lists. Kaiser Family Foundation. April, 2019.
Musumeci, M., Watts, M., & Chidambaram, P. (2020). Key State Policy Choices About Medicaid Home and Community-Based Services. Kaiser Family Foundation. February, 2020.
Nahmias, A. S., Pellecchia, M., Stahmer, A. C., & Mandell, D. S. (2019). Effectiveness of community-based early intervention for children with autism spectrum disorder: a meta-analysis. Journal of Child Psychology and Psychiatry, 60(11), 1200–1209. https://doi.org/10.1111/jcpp.13073
Nguyen, C. T., Krakowiak, P., Hansen, R., Hertz-Picciotto, I., & Angkustsiri, K. (2016). Sociodemographic disparities in intervention service utilization in families of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(12), 3729–3738. https://doi.org/10.1007/s10803-016-2913-3
Payakachat, N., Tilford, J. M., & Kuhlthau, K. A. (2018). Parent-reported use of interventions by toddlers and preschoolers with Autism spectrum disorder. Psychiatric Services (washington, D. C.), 69(2), 186–194. https://doi.org/10.1176/appi.ps.201600524
Pickles, A., Le Couteur, A., Leadbitter, K., Salomone, E., Cole-Fletcher, R., Tobin, H., & Green, J. (2016). Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. The Lancet, 388(10059), 2501–2509. https://doi.org/10.1016/S0140-6736(16)31229-6
Politte, L. C., Howe, Y., Nowinski, L., Palumbo, M., & McDougle, C. J. (2015). Evidence-based treatments for autism spectrum disorder. Current Treatment Options in Psychiatry, 2(1), 38–56. https://doi.org/10.1007/s40501-015-0031-z
Pourat, N., Davis, A. C., Chen, X., Vrungos, S., & Kominski, G. F. (2015). In California, primary care continuity was associated with reduced emergency department use and fewer hospitalizations. Health Aff (millwood), 34(7), 1113–1120. https://doi.org/10.1377/hlthaff.2014.1165
Reichow, B. (2012). Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(4), 512–520. https://doi.org/10.1007/s10803-011-1218-9
Rubenstein, E., Croen, L., Lee, L. C., Moody, E., Schieve, L. A., Soke, G. N., & Daniels, J. (2019). Community-based service use in preschool children with autism spectrum disorder and associations with insurance status. Research in Autism Spectrum Disorder. https://doi.org/10.1016/j.rasd.2019.101410
Samson, A. C., Phillips, J. M., Parker, K. J., Shah, S., Gross, J. J., & Hardan, A. Y. (2014). Emotion dysregulation and the core features of autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(7), 1766–1772. https://doi.org/10.1007/s10803-013-2022-5
Saqr, Y., Braun, E., Porter, K., Barnette, D., & Hanks, C. (2018). Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism, 22(1), 51–61. https://doi.org/10.1177/1362361317709970
Shattuck, P. T., & Grosse, S. D. (2007). Issues related to the diagnosis and treatment of autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 129–135. https://doi.org/10.1002/mrdd.20143
Smith, D. P., Hayward, D. W., Gale, C. M., Eikeseth, S., & Klintwall, L. (2019). Treatment gains from early and intensive behavioral intervention (EIBI) are maintained 10 years later. Behavior Modification. https://doi.org/10.1177/0145445519882895
Soke, G. N., Maenner, M. J., Christensen, D., Kurzius-Spencer, M., & Schieve, L. A. (2018). Prevalence of Co-occurring medical and behavioral conditions/symptoms among 4- and 8-year-old children with autism spectrum disorder in selected areas of the United States in 2010. Journal of Autism and Developmental Disorders, 48(8), 2663–2676. https://doi.org/10.1007/s10803-018-3521-1
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(1), 48–59. https://doi.org/10.1007/s10803-011-1215-z
The 97th US Congress. (1981). Omnibus Budget Reconciliation Act (OBRA)H.R. 3982 (97th): (PL 97–35). 1981.
Tsai, M. H., Xirasagar, S., Carroll, S., Bryan, C. S., Gallagher, P. J., Davis, K., & Jauch, E. C. (2018). Reducing high-users’ visits to the emergency department by a primary care intervention for the uninsured: a retrospective study. Inquiry, 55, 46958018763917. https://doi.org/10.1177/0046958018763917
U.S. Department of Education Office of Special Education Programs. (2021). 42nd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2020. Washington, DC: U.S. Department of Education Office of Special Education and Rehabilitative Services.
Velott, D. L., Agbese, E., Mandell, D., Stein, B. D., Dick, A. W., Yu, H., & Leslie, D. L. (2015). Medicaid 1915(c) home- and community-based services waivers for children with autism spectrum disorder. Autism, 20(4), 473–482. https://doi.org/10.1177/1362361315590806
Warfield, M. E., Chiri, G., Leutz, W. N., & Timberlake, M. (2014). Family well-being in a participant-directed autism waiver program: the role of relational coordination. Journal of Intellectual Disability Research, 58(12), 1091–1104. https://doi.org/10.1111/jir.12102
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), e1303-1311. https://doi.org/10.1542/peds.2011-0426
Weiss, C. L. A., & Mettrick, J. E. (2010). Individuals with Disabilities Education Act (IDEA). In C. S. Clauss-Ehlers (Ed.), Encyclopedia of Cross-Cultural School Psychology. (pp. 542–545). Springer, US.
Wharff, E. A., Ginnis, K. B., Ross, A. M., & Blood, E. A. (2011). Predictors of psychiatric boarding in the pediatric emergency department: implications for emergency care. Pediatric Emergency Care, 27(6), 483–489. https://doi.org/10.1097/PEC.0b013e31821d8571
Yingling, M. E., & Bell, B. A. (2019a). Racial-ethnic and neighborhood inequities in age of treatment receipt among a national sample of children with autism spectrum disorder. Autism, 23(4), 963–970. https://doi.org/10.1177/1362361318791816
Yingling, M. E., & Bell, B. A. (2019b). Underutilization of early intensive behavioral intervention among 3-year-old children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(7), 2956–2964. https://doi.org/10.1007/s10803-019-04005-0
Zhang, X., Carabello, M., Hill, T., He, K., Friese, C. R., & Mahajan, P. (2019). Racial and ethnic disparities in emergency department care and health outcomes among children in the United States. Frontiers in Pediatrics, 7, 525. https://doi.org/10.3389/fped.2019.00525
Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., & Natowicz, M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research. Pediatrics, 136(Suppl 1), S60-81. https://doi.org/10.1542/peds.2014-3667E
Acknowledgments
Dr. Liu contributed to the conception and design of the study, data acquisition, analysis and interpretation of data and drafting the manuscript. Ms. Velott contributed to design of the study, the interpretation of data and drafting the manuscript. Dr. Kong contributed to the conception and design of the study, analysis and interpretation of data and drafting the manuscript. Dr. Dick contributed to the design of the study, analysis and interpretation of data and critically reviewing the manuscript. Dr. Murray contributed to the conception of the study and interpretation of data and drafting the manuscript. Mr. Ba contributed to the data acquisition and analysis of data. Dr. Mandell, Dr. Stein, Dr. Cidav critically reviewed/edited the manuscript. Dr. Leslie contributed to the conception and design of the study, data acquisition, and interpretation of data and drafting the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding
This study was supported by an NIH Grant 5R01MH108558; Lan Kong received support from NIH CTSI Grant UL1 TR002014. The authors would like to acknowledge the Penn State College of Medicine Center for Applied Sciences in Health Economics as well as the Penn State Clinical and Translational Science Institute for their essential support of this work. The authors have no conflicts of interest relevant to this article to disclose.
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Liu, G., Velott, D. ., Kong, L. et al. The Association of the Medicaid 1915(c) Home and Community-Based Services Waivers with Emergency Department Utilization among Youth with Autism Spectrum Disorder. J Autism Dev Disord 52, 1587–1597 (2022). https://doi.org/10.1007/s10803-021-05060-2
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DOI: https://doi.org/10.1007/s10803-021-05060-2