Five steps for success: The Autism Diagnosis Education Pilot Project

1. Five steps for success:The 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. Target Communities

5. 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.

6. 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.

7. 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.

8. Step One: Increase the supply of people who screen for delayed development through the use of evidence-based tools. How? The Concerned About Development Learning Collaborative

9. Why Screen? Even the best doctors make mistakes. One in eight children are born with some delay in development. With more responsibilities , patients and meetings, your clinical eye is more challenged now than ever before. Typical surveillance misses up to 60% of children with a developmental problem, and we all know how important early detection is for families and doctors. 20% of mental health problems identified without tools: (Lavigne et al. Pediatr. 1993; 91:649-655)30% of developmental disabilities identified without tools: (Palfrey et al. JPEDS. 1994; 111:651-655)80-90% with mental health problems identified with tools: (Sturner, JDBP 1991; 12:51-64)70-80% with developmental disabilities correctly identified with tools:(Squires et al., JDBP 1996; 17:420-427)

10. What are the benefits of screening? Screening 411 The CADLC developmental screening tools follow recommendations of the American Academy of Pediatrics. These tools are multi-question surveys. Parents or caregivers answer the questions before a well child visit. Providers score the answers (we teach you how) and determine and appropriate course of action (we teach you that too.) -Delayed development is common. -You’re seeing the kids when it matters. -Developmental screening is best practice. -Everyone is starting to do it. -Developmental screening improves access services that help young children develop physically, socially and emotionally.

11. It’s Best PracticeOhio Chapter AAP Recommendations

12. CADLC Content • How do you use screening tools? • How do you refer children suspected of having delayed development? • How do you refer children who fail an autism screen? • How do you get billed fairly for your work?

13. CADLC Process • How will you implement screening into your busy practice? • How will you receive continuing support? • How will you collaborate with other practices? • How will you use quality improvement to make you better at your job?

14. Learning Collaborative Aim • 90% of children have a documented screening for autism at 18 and 24 month well child visits. • 90% of children have a documented developmental screening at 9, 18 and 24 or 30 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.

15. Help Get Yourself Recertified. Part IV MOC Delivers Measured Results. Just look what CADLC has already done. It’s a New Requirement! For most pediatricians, Part IV Maintenance of Certification is a requirement, starting in 2010. CADLC participants will be eligible for Part IV Maintenance of Certification through the American Board of Pediatrics. It won’t cost you a dime.

16. CADLC Delivers Measured Results

17. I don’t have enough time: Overcoming the barriers to developmental screening . Simple Solutions -Screening tools target concerns for parents and practitioners. -CADLC teaches a team approach to maximize efficiency. -Many CADLC teams do well child checks in the same amount of time now than before they were using the screening tools. -CADLC provides the screening tools to you at no cost. -CADLC provides a website and live support to address questions. -CADLC address local referral and early intervention options. -You’ll meet the local resources in your community. -You’ll discuss ways to improve partnerships in the area. -You can’t afford not to screen. -Early identification improves care. -Early identification saves resources for parents and providers. -CADLC provides information on coding, billing, and reimbursement. -CADLC has helped many practices generate new revenue. Common Concerns I don’t have enough time. I don’t have the right tools. I don’t know where to refer. I can’t afford to screen.

18. Screening Collaborative Results • 55 sites • More than 800 potential practitioners • 5 pediatric residency programs • 2 family medicine residency programs • Continuing Education Credits • Maintenance of Certification

19. 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.

20. Step Two:Diagnostic Partnerships • A strategy to increase timely access to a standardized, comprehensive diagnostic evaluation • Psychoeducational component • 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)

21. How do the diagnostic teams work? • Doctors from Step One screen the child. • If a child fails a screen, they are referred. • Under three to Help Me Grow. • Over three to Lead Educational Agency. • If the child isn’t suspected of having autism, the normal protocol applies.

22. What if a child is suspected of having autism? • 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

23. 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)

24. 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

25. Four counties have had at least one child go through the Diagnostic Partnership process :

26. Four counties have had at least one child go through the Diagnostic Partnership process:

27. Four counties have had at least one child go through the Diagnostic Partnership process:

28. 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.

29. 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

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

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

32. 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.

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

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

35. 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.

36. What’s Next? • Now: Statewide Spread • Now: Public Awareness Campaign • September-February: Concerned About Development Learning Collaborative • April: Diagnostic Partnership Training • www.concernedaboutdevelopment.org • dfarkas@ohioaap.org (614) 846-6258