Five steps for success the autism diagnosis education pilot project

1. Five steps for successthe autism diagnosis education pilot project Dan Farkas Project Manager Autism Diagnosis Education Pilot Project. Ohio Chapter, American Academy of Pediatrics

2. Disclosure This presentation is funded through a grant from the Ohio Department of Health Bureau of Early Intervention Services. I have no other disclosures.

3. ADEPP Objectives • Heighten public awareness of early signs of autism • Improve access to developmental screening • Improve coordination of medical diagnosis • Enhance access to evidence-based services Local People Local Solutions Autism Diagnosis Education Pilot Project Local Situations

4. Focus Group Findings • There are limited local public awareness efforts related to early identification of developmental disorders. • There is agreement that developmental screening, including for autism, is important. • Many medical practices do surveillance.

5. Focus Group Findings • Very few medical practices do standardized screening. • No one is doing routine screening for all children. • Diagnosis of autism is currently being done at academic pediatric centers with long waits.

6. Focus Group Findings • Resources for children and families affected by autism are available, but fragmented and not well known, even in the local community. • Successful efforts for systems change have been marked by passionate leadership, broad-based community support that includes parents, and financial backing.

7. Step One: Increase the supply of people who screen for developmental delays like autism.

8. Why? • Delayed development is common! • It’s best practice! • Everyone is starting to do it! • Learn more about the kids! • Streamline the visits to address parents’ concerns! • Early intervention makes a difference! • Enhance your bottom line!

9. Ohio Chapter AAP recommendations • 9 month WCC • 18 month WCC • 30 (or 24) month WCC • 12 and 36 month WCC • ASQ or PEDS • ASQ or PEDS • ASQ or PEDS • Autism screen (MCHAT) • ASQ SE

10. Learning Collaborative Aim • 90% of children have a documented screening for autism at 24 month well child visits. • 90% of children have a documented developmental screening at 9, 12, 18, 24 (or 30), and 36 month well child visits. • 90% of children identified as at risk or with delay are referred for diagnosis and treatment. • 90% of families report practice receptive to developmental concerns.

11. Screening Collaborative Results • 55 sites • More than 400 practitioners • 5 pediatric residency programs • 2 family medicine residency programs • Continuing Education Credits • Maintenance of Certification

12. What we’ve learned about Step One -Content and process both matter. -It’s hard work, but it can be done. -Community spirit is important.

13. Step Two:Diagnostic Partnerships • A strategy to increase timely access to a standardized, comprehensive diagnostic evaluation • Psychoeducationalcomponent • Medical component • A strategy that builds on existing local, community-based resources • A strategy that requires collaboration and communication among families, local physicians, HMG, and LEAs/ESCs • A strategy that acknowledges the current and future practice of pediatrics (R3P)

14. A standardized, comprehensive diagnostic evaluation should include the following components: • Health, developmental and behavioral histories (including a 3-generation pedigree & review of systems) • Physical exam • Developmental, psychoeducational evaluation • Determination of the presence of a DSM-IV diagnosis (including a standardized tool) • Assessments of the family’s knowledge of ASD, challenges, coping skills, and resources/supports • Lab work -- Johnson, Myers, and the Council on Children with Disabilities, 2008

15. HMG/LEA: The “Enhanced Evaluation” • Additional tools for the “enhanced” evaluation: • The Routines-Based Interview (RBI) • The Family Quality of Life Survey (FQOL) • The Autism Diagnostic Observation Schedule (ADOS)

16. What will the Partnership MD do? Evaluation team sends “referral” and report to Partnership MD Partnership MD completes medical evaluation & counsels family Partnership MD sends report to HMG/LEA and referring MD Are results such that further consultation is recommended? YES Partnership MD refers to regional diagnostic center

17. What have we learned about Step Two? Step Two (Diagnostic Partnerships) -People think this is the right thing to do. -It’s harder than we think it is. -Every county is different. -Screening and diagnosis go hand in hand. -When it works, it works well.

18. Step 3 • Grand Rounds • Developmental Screening • 6 Hospitals August to November 2008 • Plan to reach all 8 pediatric and 23 family medicine programs • Web Based Learning Modules • Developmental Surveillance and Screening • The Evidence for Early Intervention • The Referral Process • The Model for Improvement

19. What are we learning about Step 3? • Step Three (Grand Rounds) -They can serve as infomercials. -We’re not sure of their impact.

20. Step 4 • Enhance communication between health care and early and education providers • Ohio’s Step Up to Quality

21. What have we learned about Step 4? Step Four (Coordinated Care) -Broaden the representation beyond HMG -If you get the right people in the room, it can be figured out -It only takes 90 minutes.

22. Step 5: Public Awareness Campaign • Raise Awareness • Share your concerns with your doctor • Expect developmental screening

23. Step 5: Public Awareness Campaign • Traditional Media • Social Media (Ohio Autism Project on Twitter) • www.concernedaboutdevelopment.org

24. What have we learned about Step 5? Step Five (Public Awareness) -It’s not cheap. -It takes more time than I thought. -It is effective.

25. What’s Next? • Now: Statewide Spread • Now: Public Awareness Campaign • September-February: Concerned About Development Learning Collaborative • April: Diagnostic Partnership Training • www.concernedaboutdevelopment.org