Advertisement

Implementing Services for Children with ASD and Their Families Within State Early Intervention Programs: A View from Two States – Opportunities, Challenges, and Future Directions

  • Donna M. Noyes-GrosserEmail author
  • Ron Benham
  • Tracy Osbahr
Chapter
Part of the Autism and Child Psychopathology Series book series (ACPS)

Abstract

The US Centers for Disease Control and Prevention estimates about 1 in 59 children in the USA has an autism spectrum disorder (ASD). A compelling parallel can be drawn between states’ implementation of the national Part C Early Intervention Program, established in 1986 under the Individuals with Disabilities Education Act (IDEA), and the increased prevalence of very young children affected by ASD. States participating in this national program for infants and toddlers and their families have been on the front line of service delivery to the growing population of very young children with ASD and their families. This chapter provides a broad overview of the Part C Early Intervention Program, state practices and challenges related to Part C implementation with import to young children with ASD and their families, and the experiences of two states, New York and Massachusetts, in addressing the needs of these toddlers and families.

Keywords

Autism Early intervention Part C IDEA Toddlers Family 

References

  1. Autism Speaks (2016). http://www.autismspeaks.org/site-wide/autism-insurance-reform. Accessed Feb 2016.
  2. Barger, B., Rice, C., Shaw, E., Squires, J., Noyes, D., & Kavulic, C. Use of diagnosed conditions for Part C Early Intervention (EI) Service Eligibility. The 31st Annual International Conference on Young Children with Special Needs and Their Families, Division for Early Childhood (DEC) of the Council for Exceptional Children (CEC), 7–9 October 2015, Atlanta, GA.Google Scholar
  3. Boyd, B., Odom, S., Humphreys, B., & Sam, A. (2010). Infants and toddlers with autism spectrum disorder: Early identification and early intervention. Journal of Early Intervention, 32(2), 75–98.Google Scholar
  4. Baio, J., Wiggins, L., Christensen, D.L., Maenner, M.J., Daniels, J., Warren, Z,...Dowling, N.F. (2018). Prevalence of autism spectrum disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveillance Summaries, 67(No. SS-6):1–23. Google Scholar
  5. Centers for Disease Control and Prevention (2014). Prevalence of autism spectrum disorder among children aged 8 years – Autism and developmental disabilities monitoring network, 11 Sites, United States, 2010, MMRW 2014;63;63 (SS--2), pp. 1–21.Google Scholar
  6. Centers for Disease Control and Prevention (2016). Autism spectrum disorders – Basic facts. Accessed Feb 2016. www.cdc.gov.ncbddd/autism/index.html
  7. Centers for Medicare and Medicaid Services, Center for Medicaid and CHIP Services (2014a, July). Clarification of medicaid coverage of services to children with autism. CMCS Informational Bulletin. Accessed https://www.medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-07-07-14.pdf
  8. Centers for Medicare and Medicaid Services, Center for Medicaid and CHIP Services (2014b, September). Medicaid and CHIP FAQs: Services to address autism. Accessed Feb 2016. https://www.medicaid.gov/federal-policy-guidance/downloads/faq-09-24-2014.pdf
  9. Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28, 42–52.Google Scholar
  10. Early Childhood Outcomes Center (2015). State approaches to family outcomes measurement: Part C Indicator 4, FFY 2013. Accessed Feb 2016. http://ectacenter.org/eco/assets/pdfs/map_partfamily.pdf
  11. Early Intervention Family Alliance. Accessed Feb 2016. www.eifamilyalliance.org
  12. Eddy, D. M., & Hasselblad, V. (1995). Analyzing evidence by the confidence and profile method. In K. A. McCormick, S. R. Moore, & R. A. Siegel (Eds.), Clinical practice guideline development: Methodology perspectives (pp. 41–51). Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services (AHCPR Publication No. 95-0009).Google Scholar
  13. Elbaum, B., Noyes-Grosser, D.M., Siegenthaler, K., Romanczyk, R., Cavalari, R., Carter, R.L., Barczykowski, A.L., & Zopluoglu, C. Utility of items specific to families of a child with an autism spectrum disorder. Presented at the International Meeting for Autism Research, 14–17 May 2014, Atlanta, GA.Google Scholar
  14. Fisher, W. P., Jr., Elbaum, B., & Coulter, W. A. (2012). Construction and validation of two parent-report scales for the evaluation of early intervention programs. Journal of Applied Measurement, 13(1), 57–76.Google Scholar
  15. Greenspan, S., & Weider, S. (1997). Developmental patterns and outcomes infants and children with disorders in relating and communicating: A chart review of 200 cases of children with autism spectrum diagnoses. Journal of Developmental and Learning Disorders, 1, 87–114.Google Scholar
  16. Holland, J. P. (1995). Development of a clinical practice guideline for acute low back pain. Current Opinion in Orthopedics, 6, 63–69.Google Scholar
  17. IDEA Infant and Toddler Coordinators Association. Association Information. IDEA Infant Toddler Coordinators Association. Accessed Feb 2016. http://www.ideainfanttoddler.org
  18. IDEA Infant Toddler Coordinators Association (2014). 2014 Finance survey. IDEA Infant Toddler Coordinators Association. Accessed Feb 2016. http://ideainfanttoddler.org
  19. IDEA Infant Toddler Coordinators Association (2015). 2015 State challenges survey. IDEA Infant Toddler Coordinators Association. Accessed Feb 2016. http://ideainfanttoddler.org
  20. Individuals with Disabilities Education Act of 2004, U.S.C. §§631 (2016a). Accessed Feb 2016. http://www.ed.gov
  21. Individuals with Disabilities Education Act of 2004, U.S.C. §§635 (2016b). Accessed Feb 2016. http://www.ed.gov
  22. Individuals with Disabilities Education Act of 2004, U.S.C. §§616 (2016c). Accessed Feb 2016. http://www.ed.gov
  23. Individuals with Disabilities Education Act of 2004, USC Section 636 (2016d). Accessed Feb 2016 www.ed.govGoogle Scholar
  24. Infant and Toddler Coordinators Association (2013). Child count data charts. IDEA Infant Toddler Coordinators Association. Accessed Feb 2016. http://ideainfanttoddler.org
  25. Johnson, C. P., Myers, S. M., & the Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215.Google Scholar
  26. Kane, M., & Trochim, W. M. K. (2007). Concept mapping for planning and evaluation. Thousand Oaks, CA: Sage Publications.Google Scholar
  27. Lord, C., & Bishop, S. (2010). Autism Spectrum Disorder: Diagnosis, prevalence, and services for children and families. Social Policy Report, 24(2), 1-21.Google Scholar
  28. Manning, S., & Kernan, G. (2015). Early Diagnoses of Autism Spectrum Disorders (ASDs) in MA: Birth Cohort 2001–2010. Massachusetts Department of Public Health, Boston, MA.Google Scholar
  29. New York State Department of Health, Bureau of Early Intervention (2015). IDEA Part C Profiles. Accessed Feb 2016. http://www.health.ny.gov/statistics/community/infants_children/early_intervention
  30. New York State Department of Health, Bureau of Early Intervention (2017a). Clinical practice guideline on assessment and intervention services for young children with autism spectrum disorder: 2017 update, report of the recommendations. New York State Department of Health, Bureau of Early Intervention, Room 208 Corning Tower Building, Albany, New York. Accessed Nov 2017. http://www.health.ny.gov/community/infants_children/early_intervention/memoranda.htm
  31. New York State Department of Health, Bureau of Early Intervention (2017b). Clinical practice guideline on assessment and intervention services for young children with autism spectrum disorder: 2017 update, report of the research evidence. New York State Department of Health, Bureau of Early Intervention, Room 208 Corning Tower Building, Albany, New York. Accessed Nov 2017. http://www.health.ny.gov/community/infants_children/early_intervention/memoranda.htm
  32. New York State Department of Health, Bureau of Early Intervention (2017c). Clinical practice guideline on assessment and intervention services for young children with autism spectrum disorder: 2017 update, quick reference guide for parents and professionals. New York State Department of Health, Bureau of Early Intervention, Room 208 Corning Tower Building, Albany, NY. Accessed November, 2017. https://www.health.ny.gov/publications/20152.pdfGoogle Scholar
  33. New York State Department of Health, Early Intervention Program (1999). New York State Early Intervention Program Clinical Practice Guideline on Autism/pervasive developmental disorders, Assessment and Intervention For Young Children (Age 0–3 Years). New York State Department of Health, Bureau of Early Intervention, Room 208 Corning Tower Building, Albany, New York.Google Scholar
  34. Noyes-Grosser, D., & MacCleod, L. (2013). Expanding the national toolbox for measuring part C participation rates: Feasibility and utility of birth cohort methodology. DaSy Center for IDEA Early Childhood Data Systems, National Conference, 16–17 September 2013, Washington, DC.Google Scholar
  35. Noyes-Grosser, D.M., & Elbaum, B. (2011, May). Measuring the impact of early intervention services on children and families: A model approach to family-centered program evaluation and quality improvement. Paper presented at the conference of the International Society for Early Intervention, New York City, NY.Google Scholar
  36. Noyes-Grosser, D. M., Holland, J. P., Lyons, D., Holland, C. L., Romanczyk, R. G., & Gillis, J. M. (2005). Rationale and methodology for developing guideline for early intervention services for young children with developmental disabilities. Infants and Young Children, 13(2), 119–135.Google Scholar
  37. Noyes-Grosser, D. M., Rosas, S. R., Goldman, A., Elbaum, B., Romancyzk, R., & Callahan, E. H. (2013). Conceptualizing child and family outcomes for children with ASD and their families. Journal of Early Intervention, 35(4), 332–354.Google Scholar
  38. Noyes-Grosser, D.M., Elbaum, B., Wu, Yan, Siegenthaler, K.M., Cavalari, R.S., Gills, J.M., & Romanczyk, R. (in press). Early intervention outcomes for toddlers with autism spectrum disorder and their families. Infants & Young Children.Google Scholar
  39. Rogers, S. J., & Dawson, G. (2009a). Play and engagement in early autism: The Early Start Denver model. Volume I: The treatment. New York: Guilford Press.Google Scholar
  40. Rogers, S. J., & Dawson, G. (2009b). Play and engagement in early autism: The Early Start Denver model. Volume II: The curriculum. New York: Guilford Press.Google Scholar
  41. Schriger, D. L. (1995). Training panels in methodology. In K. A. McCormick, S. R. Moore, & R. A. Siegel (Eds.), Clinical practice guideline development: Methodology perspectives (pp. 115–121). Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services (AHCPR Publication No. 95-0009).Google Scholar
  42. Shekelle, P. G., Ortiz, E., Rhodes, S., Morton, S. C., Eccles, M. P., Grimshaw, J. M., et al. (2001). Validity of the Agency for Healthcare Research and Quality clinical practice guidelines: How quickly do guidelines become outdated? JAMA, 286(12), 1461–1467.Google Scholar
  43. U.S. Department of Education, Office of Special Education Programs (2014a). FFY 2013-2018 Part C SPP/APR (OMB NO: 1820-0578 / Expiration Date: 5/31/2017). Accessed Feb 2016. http://www2.ed.gov/fund/data/report/idea/sppapr.html
  44. U.S. Department of Education, Office of Special Education Programs (2014b). FFY 2013–2018 Part C SPP/APR (OMB NO: 1820-0578 / Expiration Date: 5/31/2017). Accessed Feb 2016. http://www2.ed.gov/policy/speced/guid/idea/capr/2014/index.html
  45. U.S. Department of Education, Office of Special Education Programs (2016). IDEA Section 18 Data Products, 2014–15. U.S. Department of Education, Office of Special Education Programs. Accessed Feb 2016. http://www2.ed.gov/programs/osepidea/618-data/index.html
  46. Warren, Z., McPHeeters, 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.Google Scholar
  47. Weitlauf, A.S., McPheeters, M.L., Peters B., et al. (2014). Therapies for children with autism spectrum disorder: Behavioral interventions update [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); (Comparative Effectiveness Review, No. 137.) Accessed Feb 2016. http://www.ncbi.nlm.nih.gov/books/NBK241444
  48. Woolf, S. H. (1991). AHCPR interim manual for clinical practice guideline development. Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services (AHCPR Publication No. 910018).Google Scholar
  49. Woolf, S. H. (1995). An organized analytic framework for practice guideline development: Using the analytic logic as a guide for reviewing evidence, developing recommendations, and explaining the rationale. In K. A. McCormick, S. R. Moore, & R. A. Siegel (Eds.), Clinical practice guideline development: Methodology perspectives (pp. 105–113). Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services (AHCPR Publication No. 95-0009).Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Donna M. Noyes-Grosser
    • 1
    Email author
  • Ron Benham
    • 2
  • Tracy Osbahr
    • 3
  1. 1.New York State Department of HealthBureau of Early InterventionAlbanyUSA
  2. 2.Massachusetts Department of Public HealthBostonUSA
  3. 3.Massachusetts Department of Public HealthMA Early Intervention ProgramBostonUSA

Personalised recommendations