Journal of Autism and Developmental Disorders

, Volume 35, Issue 1, pp 3–13 | Cite as

Access and Service Use by Children with Autism Spectrum Disorders in Medicaid Managed Care

  • Lisa A. Ruble
  • Craig Anne Heflinger
  • J. William Renfrew
  • Robert C. Saunders


Although Medicaid is the largest public payer of behavioral health services, information on access and utilization of services is lacking, and no data on the frequency of service use or types of services provided for children with autism spectrum disorders (ASDs) are available. As states move toward managed care approaches for their Medicaid program, services information is critical. Behavioral health service data for children with autism spectrum disorders were collected from a state Medicaid Managed Care (MMC) program and analyzed from fiscal years 1995 through 2000. Findings revealed that the number of children who received services over time increased significantly; however, the rate of service use was only one tenth of what should be expected based on prevalence rates. The mean number of service days provided per child decreased significantly, about 40%, and the most prevalent forms of treatment changed. Day treatment vanished and medication and case management increased disproportionately to the number of children served. Explanations and implications of the findings are presented as well as recommendations for future research.


services medicaid managed care mental health behavioral health 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. Agency for Healthcare Research and Quality. (2001). Child health toolbox. Washington, DC: Author. Retrieved August 17, 2003, from
  2. American Academy of Pediatrics. (2001). The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5):1221–1226Google Scholar
  3. American College of Mental Health Administrators. (2001). A proposed consensus set of indicators for behavioral health. Pittsburgh: Author. Retrieved August 17, 2003, from
  4. American Medical Association1997Physician’s current procedure terminology: CPT 98, standard editionAuthorChicagoGoogle Scholar
  5. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., Test Revision ed.). Washington, DC: AuthorGoogle Scholar
  6. Braddock, D., Hemp, R., Rizzolo, M., Parish, S., & Pomeranz, A. (2002). The State of the States in Developmental Disabilities: 2002 Study Summary. University of Colorado: Coleman Institute for Cognitive Disabilities and the Department of Psychiatry. Retrieved August 24, 2003 from edu/ColemanInstitute/stateofthestates/summary_2002.pdf
  7. Bureau of TennCare. (2003). Eligibility for TennCare coverage. Retrieved August 17, 2003, from
  8. Center for Medicare and Medicaid Services. (2002). Procedures for coding and payment determinations for clinical laboratory tests and for durable medical equipment. Washington, DC: Author. Retrieved August 17, 2003, from
  9. Chakrabarti, S., Fombonne, E. 2001Pervasive developmental disorders in preschool childrenJournal of the American Medical Association28530933099Google Scholar
  10. Chang, C., Kiser, L., Baily, J., Martins, M., Gibson, W., Schaberg, K., Mirvis, D., Applegate, W. 1998Tennessee’s failed managed care program for mental health and substance abuse servicesJournal of the American Medical Association279864869Google Scholar
  11. Children’s Mental Health Benchmarking Project: Second-Year Report. Lexington, MA: Dougherty Management Associates, Inc. (available at Scholar
  12. Committee on Children with Disabilities2001Technical report: the pediatrician’s role in the diagnosis and management of autistic spectrum disorder in childrenPediatrics10712211226Google Scholar
  13. Coordinating Center for the Managed Behavioral Health Care in the Public Sector. (2002). Children and adolescents with severe emotional disorders study. Chicago: Psychiatric Department. University of Illinois (available at Scholar
  14. Croen, L., Grethr, J., Hoogstrate, J., Selvin, S. 2002The changing prevalence of autism in CaliforniaJournal of Autism and Developmental Disorders32207215Google Scholar
  15. Dawson, G., Osterling, J. 1997

    Early intervention in autism

    Guralnick, M. eds. The effectiveness of early interventionBrookes PublishingBaltimore, MD307326
    Google Scholar
  16. Deal, L. W., Shiono, P. H. 1998Medicaid managed care and children: An overviewFuture of Children893104Google Scholar
  17. Department of Developmental Services. (1999). Changes in the population of persons with autism and pervasive developmental disorders in california’s developmental services system: 1987 through 1998. Report to the legislature. Retrieved August 17, 2003, from Scholar
  18. Department of Health. (March 1999). Performance Audit. Retrieved August 17, 2003, from http://www.comptroller. Scholar
  19. Division of State Audit2002Performance audit: Medicaid encounter data December 2001Comptroller of the TreasuryNashville, TNGoogle Scholar
  20. Fombonne, E. 2003The prevalence of autismJournal of the American Medical Association2898789Google Scholar
  21. Fox, H. B., McManus, M. A. 1998Improving state Medicaid contracts and plan practices for children with special needsFuture of Children8105118Google Scholar
  22. Greene, W. H. 1997Econometric analysis3rd ed.Prentice-HallNew YorkGoogle Scholar
  23. Heflinger, C., Simpkins, C., Northrup, D., Saunders, R., & Renfrew W. (2000). The status of TennCare children and adolescents: Behavioral health, health, service use, and consumer satisfaction: The IMPACT study baseline report on interview data. Nashville, TN: Center for Mental Health Policy, Vanderbilt Institute for Public Policy Studies. Retrieved August 17, 2003, Google Scholar
  24. Human Services Research Institute (January 2002). Managed behavioral health care in the public sector: A study of utilization, costs, and outcomes. : Cambridge, MAGoogle Scholar
  25. Hurth, J., Shaw, E., Izeman, S. G., Whaley, K., Rogers, S. J. 1999Areas of agreement about effective practices among programs serving young children with autism spectrum disordersInfants and Young Children121726Google Scholar
  26. Hutchinson, A., Foster, E. M. 2003The effect of Medicaid managed care on mental health care for children: A review of the literatureMental Health Services Research53954Google Scholar
  27. Interagency agreement. (2001). Retrieved August 17, 2003, Scholar
  28. Ireys, H. T., Wehr, E., Cooke, R. E. 1999Defining medical necessity: Strategies for promoting access to quality care for persons with developmental disabilities, mental retardation, and other special health care needsNational Center for Education in Maternal and Child HealthArlington, VAGoogle Scholar
  29. Kaiser Commission on Medicaid and the Uninsured. (2001, December). Medicaid and managed care. Retrieved August 17, 2003, Scholar
  30. Mandell, D., Jisterud, J., Levy, S., Pinto-Martin, J. 2002Race differences in the age at diagnosis among Medicaid-eligible children with autismJournal of the American Academy of Child and Adolescent Psychiatry4114471453Google Scholar
  31. Mark, T., Buck, J., Dilonardo, J., Coffey, R., Chalk, M. 2003Medicaid expenditures on behavioral health carePsychiatric Services54188194Google Scholar
  32. Mele, N. C., Flowers, J. S. 2000Medicaid managed care and children with special health care needs: a case study analysis of demonstration waivers in three statesJournal of Pediatric Nursing156372Google Scholar
  33. M.I.N.D. Institute. (2002). Report to the legislature on the principal findings from the epidemiology of autism in California: A comprehensive pilot study. M.I.N.D. Institute. University of California, Davis. Retrieved August 17, 2003, pdfGoogle Scholar
  34. National Committee for Quality Assurance. (n.d.). The health plan employer data and information set (HEDIS). Specifications for survey measures. Washington, DC: Author. Retrieved August 17, 2003, Google Scholar
  35. National Research Council2001Educating Children with AutismNational Academy PressWashington, DCGoogle Scholar
  36. New York State Department of Health Early Intervention Program1999Clinical practice guideline: Autism/pervasive developmental disordersNew York State Department of HealthNew YorkGoogle Scholar
  37. Peele, P. B., Lave, J. R., Kelleher, K. J. 2002Exclusions and limitations in children’s behavioral health care coveragePsychiatric Services53591594Google Scholar
  38. Perrin, J. 2002Health services research for children with disabilitiesThe Milbank Quarterly90303324Google Scholar
  39. Ronder, R. W., Kastner, T., Parker, S. J., Walsh, K. 1999Serving people with developmental disabilities in Medicaid managed careManaged Care Quarterly72330Google Scholar
  40. Ruble, L. 2002, JulyAutism: diagnosis, treatment, and needs of families. Presented at the meeting of the Center of ExcellenceVanderbilt UniversityNashville, TNGoogle Scholar
  41. Ruble, L., Brown, S. 2003

    Pervasive Developmental Disorders: Autism

    Wolraich, M. eds. Disorders of development and learningBC DeckerLondon249266
    Google Scholar
  42. Saunders R., Heflinger CA. (in press). Assessing behavioral health system performance in the TennCare program: What has happened during Medicaid managed care? Psychiatric ServicesGoogle Scholar
  43. Sing, M. 2001Problems with using encounter data from Medicaid HMOs for research and monitoringMathematica Policy ResearchPrincetonGoogle Scholar
  44. STATA Corporation1999Stata user’s guide, Release 6Stata PressCollege Station, TXGoogle Scholar
  45. Strain P. S., Wolery M. & Izeman S. 1998. Considerations for administrators in the design of service options for young children with autism and their families. Young Exceptional Children, winter 8--16Google Scholar
  46. State of Tennessee. (2001). Annual statistical report. Department of Education. Retrieved August 17, 2003, http://www.k-12. Scholar
  47. Tennessee Department of Mental Health and Mental Retardation1996A provider risk contract. Part 3: Definition of covered services in the enhanced benefits packageAuthorNashville, TNGoogle Scholar
  48. Tennessee Hospital Association1996Uniform billing guide: UB-92, 1992 RevisionAuthorNashville, TNGoogle Scholar
  49. U.S. Department of Education. (1997). Individuals with disabilities education act amendment of 1997, P.L. (pp. 105-117). Washington, DC: Author.Google Scholar
  50. U.S. Department of Education. (1999). To assure the free appropriate public education of all children with disabilities. Twenty-first annual report to congress on the implementation of the individuals with disabilities education act. Retrieved August 17, 2003, Scholar
  51. U.S. Department of Education. (2001). To assure the free appropriate public education of all children with disabilities. Twenty-third annual report to congress on the implementation of the individuals with disabilities education act. Retrieved August 17, 2003, docGoogle Scholar
  52. U.S. Department of Health and Human Services. The international classification of diseases: 9th revision, clinical modification: ICD-9-CM. (1980). Washington: AuthorGoogle Scholar
  53. van Eys, P., & McLaughlin, J. (2002). Autism interagency study group proposal for a comprehensive statewide services plan for children with autism and their families: Report to the␣general assembly in response to SJR 567. Tennessee Children’s Health Initiative. Retrieved August 17, 2003, from␣ 12–23.pdf
  54. Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., Murphy, C. 2003Prevalence of autism in a US metropolitan areaJournal of the American Medical Association2894955Google Scholar

Copyright information

© Springer Science+Business Media, Inc. 2005

Authors and Affiliations

  • Lisa A. Ruble
    • 1
    • 3
  • Craig Anne Heflinger
    • 2
  • J. William Renfrew
    • 2
  • Robert C. Saunders
    • 2
  1. 1.Department of Pediatrics, Weisskopf Center for the Evaluation of ChildrenUniversity of LouisvilleUSA
  2. 2.Department of Human and Organizational DevelopmentVanderbilt UniversityUSA
  3. 3.Department of PediatricsUniversity of Louisville, WCECLouisvilleUSA

Personalised recommendations