2. Faculty Disclosure I do not have a significant financial relationship with the manufacturers of commercial products and/or providers of commercial services discussed in this CME activity. I do not intend to discuss an unapproved/off-label use of a commercial product/device in my presentation.

3. Overview Background State Wide Needs Assessment Results Subcommittees recommendations Overall recommendations

4. Background March 8, 2007: House Joint Resolution 23 passes by the Alabama Legislature March 20, 2007: Formation of Alabama Autism Task Force September 2007 to May 2008: Needs assessment was conducted June 17, 2008: First meeting of Task Force January 22, 2009: Task force completed final report and last meeting January 2009: Formation of Interagency Council on Autism

5. Subcommittees of the Task Force Diagnosis and Early Screening Intervention Services (0 to 5 years) Intervention Services (6 to 21 years) Health Care Ad Hoc Regional Center Development Systems of Care Financial Impact

6. Statewide Needs Assessment Conducted by the Alabama Autism Collaborative Group (multiple institutions/organizations and 17 individuals affected by autism) Data was extracted: Literature review Community forums Survey on ASD Provider Surveys Key informant interviews Focus Groups

7. Early Screening and Diagnosis Alabama: Average time from concern to diagnosis: 3 years 50% respondent diagnosis after age 3 years Average age of diagnosis: 6 years Few trained diagnostician and providers 25% received diagnosis outside of Alabama

8. Comments from parents “Three pediatricians told me there was nothing wrong with my 20-month-old son” “Pediatricians told me that my child just needed to be in preschool for socialization at ages 4-5 years” “My child’s pediatrician does not believe that ASD is a real diagnosis. I had to beg him for a referral” “Her former pediatrician refused to believe me that she had autism. Pediatricians need mandatory schooling on autism” “I would have wanted my pediatrician to take ASD seriously, pay attention to my concerns and diagnose my child”

9. Diagnosis and early screening subcommittee recommendations Establishment of University-Based Regional Interdisciplinary Diagnostic Evaluation Clinic All health care practitioners who provide primary care to young children provide universal screening and surveillance for developmental delays/disabilities and for ASD All agencies working with at risk children (EI, Head start) conduct ASD specific screening Public awareness campaigns for red flags as well as actions for parents and health care providers

10. Interventions for Birth-Five -Results Needs Assessment- Slide from Dr. Mulvihill, SOPH, 2008

11. Interventions for birth to five Priority Needs Increased intervention hours Training for parents Increased number of providers Training for providers

12. Subcommittee Recommendations Families will have access to information, support and resources they need in their home Children will receive individualized evidence based and best practice treatments which are readily available Children and families will experience a seamless transition between interventional agencies through service coordination from birth to five

13. Interventions for School-Aged Children -Results from Needs Assessment- B Mulvihill, Needs Assesment 2008

14. Interventions for School-Aged Children -Priority Needs- Broadened access to services Training for school personnel Understanding and awareness Evidence-based interventions Parent education Increased support for children with ASD Greater intensity of services Transition support

15. Health/Medical Services Few medical professionals trained in ASD Routine medical/dental providers is problematic Lack of research on some treatments Proliferation of alternative medicine treatments Lack of coverage by medical insurance

16. Medical Services -Priority Needs- More training for primary care providers Training for the broad range of providers Insurance coverage/state coverage costs Medical rather than mental health coverage

17. Systems of Care Significant weakness exist in the services delivered Other states have effective programs Need for regional diagnostic services For regional training services Ongoing consultation with schools Model intervention program

18. Regional Resource Centers A source for assessment and intervention services information Training site for professionals Identify best practices for multidisciplinary assessment of ASD Establish parent network support Public awareness campaign

19. Systems of care subcommittee State Autism Coordinator Interagency Autism Council

20. Thank You