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This is a presentation of the Autism Diagnosis Education Pilot Project at the 2009 OCALI conference in Columbus, Ohio on November 19, 2009.

This is a presentation of the Autism Diagnosis Education Pilot Project at the 2009 OCALI conference in Columbus, Ohio on November 19, 2009.

Published in Health & Medicine
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  • 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
  • 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 Practice Ohio Chapter AAP Recommendations AGE Recommended Tool 9 months PEDS or ASQ:3 12 months ASQ : SE 18 months PEDS or ASQ:3 24 months M-Chat 30 months PEDS or ASQ:3 36 months ASQ: SE 48 months PEDS or ASQ:3 Annually ages 6-18 Pediatric Symptom Checklist
  • 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
      • Psychoeducationa l 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.
    • 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 What if a child is suspected of having autism?
  • 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 Are results such that further consultation is recommended? Partnership MD sends report to HMG/LEA and referring MD Partnership MD refers to regional diagnostic center YES Partnership MD completes medical evaluation & counsels family
  • 25. Four counties have had at least one child go through the Diagnostic Partnership process : Number of children evaluated 23 Gender 15 M 8 F Chronological age Range 17-91 months Under 36 months 10 37-48 months 6 49-60 months 5 > 60 months 2
  • 26. Four counties have had at least one child go through the Diagnostic Partnership process : Diagnoses Number % Autism 6 26% PDD-NOS 3 13% Aspergers 1 4% TOTAL ASD 10 43% Language Delay/Disorder 6 26% Language + Behavior 3 13% Global Delay 3 13% No Clinical Dx 1 4%
  • 27. Four counties have had at least one child go through the Diagnostic Partnership process : Diagnosis x Age Age ASD Other Under 36 months 5 5 37-48 months 1 5 49-60 months 3 2 > 60 months 1 1
  • 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)
  • 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
    • [email_address] (614) 846-6258
  • 37.