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Journal of Autism and Developmental Disorders

, Volume 37, Issue 10, pp 1902–1912 | Cite as

Access to Care for Autism-Related Services

  • Kathleen C. Thomas
  • Alan R. Ellis
  • Carolyn McLaurin
  • Julie Daniels
  • Joseph P. Morrissey
Original paper
First Online:
Received:
Accepted:

Abstract

This paper identifies family characteristics associated with use of autism-related services. A telephone or in-person survey was completed during 2003–2005 by 383 North Carolina families with a child 11 years old or younger with ASD. Access to care is limited for racial and ethnic minority families, with low parental education, living in nonmetropolitan areas, and not following a major treatment approach. Service use is more likely when parents have higher stress. Families use a broad array of services; the mix varies with child ASD diagnosis and age group. Disparities in service use associated with race, residence and education point to the need to develop policy, practice and family-level interventions that can address barriers to services for children with ASD.

Keywords

Autism Services Access 
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Notes

Acknowledgments

Support for this research was provided by a grant from the National Institute of Mental Health (R21 MH066143) and by funding from the Centers for Disease Control through the North Carolina Center for Autism and Developmental Disabilities Research and Epidemiology. The authors wish to express their appreciation for the comments of three anonymous reviewers and the support and insight of Robin McWilliam, Vanderbilt University; Division TEACCH, especially Gary Mesibov and Ann Palmer; and the Neurodevelopmental Disorders Research Center, especially Joseph Piven and Renee Clark, at the University of North Carolina at Chapel Hill. We thank the North Carolina Public Schools, the Autism Society of North Carolina, North Carolina Families for Early Autism Treatment, the Children’s Developmental Services Assessment Centers, and the Survey Research Unit, University of North Carolina at Chapel Hill for their assistance. We especially wish to thank the families who participated in the study.

References

  1. Aday, L., & Andersen, R. (1975). Development of indices of access to medical care. Ann Arbor, MI: Health Administration Press.Google Scholar
  2. Aday, L. (1989). Designing and conducting health surveys. San Francisco, CA: Jossey-Bass.Google Scholar
  3. Birenbaum, A., Guyot, D., & Cohen, H. (1990). Health care financing for severe developmental disabilities (Vol. 14). Washington, DC: American Association on Mental Retardation.Google Scholar
  4. Birenbaum, A., & Cohen, H. (1993). On the importance of helping families: policy implications from a national study. Mental Retardation, 31(2), 67–74.PubMedGoogle Scholar
  5. Bodfish, J. (2004). Treating the core features of autism: are we there yet? Mental Retardation and Developmental Disabilities Research Reviews, 10(318–326).Google Scholar
  6. Campbell, M., Schopler, E., Cueva, J., & Hallin, A. (1996). Treatment of autistic disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 35(134–143).Google Scholar
  7. Carey, B. (2004, December 27). To treat autism, parents take a leap of faith. The New York Times.Google Scholar
  8. Davidoff, A., Yemane, A., & Hill, I. (2004). Public insurance eligibility and enrollment for special health care needs children. Health Care Financing Review, 26(1), 119–135.PubMedGoogle Scholar
  9. Dawson, G., & Osterling, J. (1997). Early intervention in autism. In Guralnick (Ed.), The Effectiveness of early intervention (pp. 307–326). Baltimore, MD: Paul H. Brookes.Google Scholar
  10. Dunn, M., Burbine, R., Bowers, C., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39–52.PubMedCrossRefGoogle Scholar
  11. Edwards, C. (2003) Diversity and cultural competence, Part 2: Issues of practical conceptualization and implementation. The North Carolina Psychologist, November-December 2003.Google Scholar
  12. Factor, D., Perry, A., & Freeman, N. (1990). Brief report: social support, and respite care use in families with autistic children. Journal of Autism and Developmental Disability, 20(1), 139–146.CrossRefGoogle Scholar
  13. Fombonne, E. (2002). Epidemiological trends in rates of autism. Molecular Psychiatry, 7, S4–S6.PubMedCrossRefGoogle Scholar
  14. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: an update. Journal of Autism and Developmental Disability, 33, 365–382.CrossRefGoogle Scholar
  15. Friedrich, W., Greenberg, M., & Crnic, K. (1983). A short-form of the questionnaire on resources and stress. American Journal of Mental Deficiency, 88, 41–48.PubMedGoogle Scholar
  16. Green, V., Pituch, K., 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, 70–84.PubMedCrossRefGoogle Scholar
  17. Gross, J. (2004, January 30). As autism cases rise, parents run frenzied race to get help. The New York Times.Google Scholar
  18. Hare, D., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), 425–444.PubMedCrossRefGoogle Scholar
  19. Hastings, R., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disability, 31(3), 327–336.CrossRefGoogle Scholar
  20. Howlin, P., & Asgharian, A. (1999) The diagnosis of autism and asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834–839.PubMedCrossRefGoogle Scholar
  21. Hurth, J., Shaw, E., Izeman, S., Whaley, K., & Rogers, S. (1999). Areas of agreement about effective practices among programs serving young children with autism spectrum disorders. Infants and Young Children, 12, 17–26.CrossRefGoogle Scholar
  22. Interagency Autism Coordinating Committee. (2005). Autism Spectrum Disorders (ASD) Roadmap.Google Scholar
  23. Kohler, F. (2000). Examining the services received by young children with autism and their families: a survey of parent responses. Focus on Autism and Other Developmental Disabilities, 14, 150–158.CrossRefGoogle Scholar
  24. Kraus, M., Gulley, S., Sciegaii, 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.Google Scholar
  25. Lau, A., Garland, A., Yeh, M., et al. (2004). Race/ethnicity and inter-informant agreement in assessing adolescent psyhopathology. Journal of Emotional and Behavioral Discorders 12, 145–156.Google Scholar
  26. Levy, S., Mandell, D., Merher, S., Ittenbach, R., & Pinto-Martin, J. (2003). Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder. Developmental and Behavioral Pediatrics, 24, 418–423.CrossRefGoogle Scholar
  27. Luther, E., Canham, D., & Cureton, V. (2005). Coping and social support for parents of children with autism. Journal of School Nursing, 21(1), 40–47.PubMedCrossRefGoogle Scholar
  28. Mandell, D., Listerus, J., Levy, S., & Pinto-Martin, J. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447–1453.PubMedCrossRefGoogle Scholar
  29. Marcus, L., Garfinkle, A., & Wolery, M. (2001). Issues in early diagnosis and intervention with young children with autism. In E., Schopler, N., Yirmiya, C., Schlman, & L., Marcus (Eds.), The Research Basis for Autism Intervention. New York: Kluwer Academic/Plenum.Google Scholar
  30. McEachin, J., Smith, T., & Lovaas, O. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97, 359–372.PubMedGoogle Scholar
  31. Newacheck, P., Hung, Y., & Wright, K. (2002). Racial and ethnic disparities in access to care for children with special health care needs. Ambulatory Pediatrics, 2(4), 247–254.PubMedCrossRefGoogle Scholar
  32. Osgood, D., Foster, F., Flanagan, C., & Ruth, G. (2005). On your own without a net: the transition to adulthood for vulnerable populations. Chicago: University of Chicago Press.Google Scholar
  33. Rhoades, J., & Cohen, J. (2004). The uninsured in America, 1996–2003: Estimates for the U.S. population under age 65 (Medical Expenditures Panel Survey Statistical Brief #45). Rockville, MD: Agency for Healthcare Research and Quality.Google Scholar
  34. Rogers, S. (1998). Neuropsychology of autism in young children and its implications for early intervention. Mental Retardation and Developmental Disabilities Research Reviews, 4, 104–112.CrossRefGoogle Scholar
  35. Rousey, A., Best, S., & Blacher, J. (1992). Mothers’ and fathers’ perceptions of stress and coping with children who have severe disabilities. American Journal of Mental Retardation, 97(1), 99–110.PubMedGoogle Scholar
  36. Ruble, L., Heflinger, C., Renfrew, J., & Saunders, R. (2005). Access and service use by children with autism spectrum disorders in medicaid managed care. Journal of Autism and Developmental Disorders, 35(1), 3–13.PubMedCrossRefGoogle Scholar
  37. Schnittker, J. (2003) Misgivings or medicine?: african Americans’ skepticism of psychiatric medication. Journal of Health and Social Behavior, 44, 506–524.PubMedCrossRefGoogle Scholar
  38. Smith, T., & Antolovich, M. (2000). Parental perceptions of supplemental interventions received by young children with autism in intensive behavior analytic treatment. Behavioral Interventions, 15, 83–97.CrossRefGoogle Scholar
  39. Stevens, G., & Shi, L. (2003). Racial and ethnic disparities in the primary care experiences of children: a review of the literature. Medical Care Research and Review, 60(1), 3–30.PubMedCrossRefGoogle Scholar
  40. Stuber, J., & Bradley, E. (2005). Barriers to medicaid enrollment: who is at risk? American Journal of Public Health, 95(2), 292–298.PubMedCrossRefGoogle Scholar
  41. Svarstad, B., Chewning, B., Sleath, B., & Claesson, C. (1999). The brief medication questionnaire: a tool for screening patient adherence and barriers to adherence. Patient Education and Counseling, 37(2), 113–124.PubMedCrossRefGoogle Scholar
  42. Thomas, K., Morrissey, J., & McLaurin, C. (2006). Use of autism-related services by families and children. Journal of Autism and Developmental Disorders, forthcoming.Google Scholar
  43. Tobing, L., & Glenwick, D. (2002). Relation of the childhood autism rating scale-parent version to diagnosis, stress and age. Research in Developmental Disabilities, 23, 211–223.PubMedCrossRefGoogle Scholar
  44. U.S. Census. (2000). Profile of Selected Economic Characteristics: 2000 (Census 2000 Summary File 3). Washington, DC: U.S. Census.Google Scholar
  45. U.S. Census. (2001). Persons by race, age and sex 2000: North Carolina. Washington, DC: U.S. Census.Google Scholar
  46. U.S. Census. (2003). Median Family Income in the Past 12 months (2003 Inflation-Adjusted Dollars) By Family Size: North Carolina. Washington, DC: U.S. Census.Google Scholar
  47. USDA (2004) Measuring rurality: rural-urban continuum codes, http://www.ers.usda.gov/Briefing/Rurality/RuralUrbCon/, accessed 8–2–06.
  48. Wieder, S., & Greenspan, S. (2003). Climbing the symbolic ladder in the DIR model through floor time/interactive play. Autism, 7, 425–435.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2007

Authors and Affiliations

  • Kathleen C. Thomas
    • 1
  • Alan R. Ellis
    • 1
  • Carolyn McLaurin
    • 1
  • Julie Daniels
    • 2
  • Joseph P. Morrissey
    • 1
    • 3
  1. 1.Cecil G. Sheps Center for Health Services ResearchUniversity of North Carolina at Chapel HillChapel HillUSA
  2. 2.Department of Epidemiology, School of Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Department of Health Policy and Administration, School of Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA

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