Autism Pilot Project Presentation

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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.

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Autism Pilot Project Presentation

  1. 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. 2. Disclosure <ul><li>This presentation is funded through a grant from the Ohio Department of Health Bureau of Early Intervention Services. </li></ul><ul><li>I have no other disclosures. </li></ul>
  3. 3. <ul><li>ADEPP Objectives </li></ul><ul><li>Heighten public awareness of early signs of autism </li></ul><ul><li>Improve access to developmental screening </li></ul><ul><li>Improve coordination of medical diagnosis </li></ul><ul><li>Enhance access to evidence-based services </li></ul>
  4. 4. Target Communities
  5. 5. Focus Group Findings <ul><li>There are limited local public awareness efforts related to early identification of developmental disorders. </li></ul><ul><li>There is agreement that developmental screening, including for autism, is important. </li></ul><ul><li>Many medical practices do surveillance. </li></ul>
  6. 6. Focus Group Findings <ul><li>Very few medical practices do standardized screening. </li></ul><ul><li>No one is doing routine screening for all children. </li></ul><ul><li>Diagnosis of autism is currently being done at academic pediatric centers with long waits. </li></ul>
  7. 7. Focus Group Findings <ul><li>Resources for children and families affected by autism are available, but fragmented and not well known, even in the local community. </li></ul><ul><li>Successful efforts for systems change have been marked by passionate leadership, broad-based community support that includes parents, and financial backing. </li></ul>
  8. 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. 9. Why Screen? <ul><li>Even the best doctors make mistakes. </li></ul><ul><li>One in eight children are born with some delay in development. </li></ul><ul><li>With more responsibilities , patients and meetings, your clinical eye is more challenged now than ever before. </li></ul><ul><li>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. </li></ul>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. 10. What are the benefits of screening? <ul><li>Screening 411 </li></ul><ul><li>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.) </li></ul><ul><li>-Delayed development is common. </li></ul><ul><li>-You’re seeing the kids when it matters. </li></ul><ul><li>-Developmental screening is best practice. </li></ul><ul><li>-Everyone is starting to do it. </li></ul><ul><li>-Developmental screening improves access services that help young children develop physically, socially and emotionally. </li></ul>
  11. 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. 12. CADLC Content <ul><li>How do you use screening tools? </li></ul><ul><li>How do you refer children suspected of having delayed development? </li></ul><ul><li>How do you refer children who fail an autism screen? </li></ul><ul><li>How do you get billed fairly for your work? </li></ul>
  13. 13. CADLC Process <ul><li>How will you implement screening into your busy practice? </li></ul><ul><li>How will you receive continuing support? </li></ul><ul><li>How will you collaborate with other practices? </li></ul><ul><li>How will you use quality improvement to make you better at your job? </li></ul>
  14. 14. Learning Collaborative Aim <ul><li>90% of children have a documented screening for autism at 18 and 24 month well child visits. </li></ul><ul><li>90% of children have a documented developmental screening at 9, 18 and 24 or 30 month well child visits. </li></ul><ul><li>90% of children identified as at risk or with delay are referred for diagnosis and treatment. </li></ul><ul><li>90% of families report practice receptive to developmental concerns. </li></ul>
  15. 15. Help Get Yourself Recertified. <ul><li>Part IV MOC Delivers Measured Results. </li></ul><ul><li>Just look what CADLC has already done. </li></ul><ul><li>It’s a New Requirement! </li></ul><ul><li>For most pediatricians, Part IV Maintenance of Certification is a requirement, starting in 2010. </li></ul><ul><li>CADLC participants will be eligible for Part IV Maintenance of Certification through the American Board of </li></ul><ul><li>Pediatrics. </li></ul><ul><li>It won’t cost you a dime. </li></ul>
  16. 16. CADLC Delivers Measured Results
  17. 17. I don’t have enough time: Overcoming the barriers to developmental screening . <ul><li>Simple Solutions </li></ul><ul><li>-Screening tools target concerns for parents and practitioners. </li></ul><ul><li>-CADLC teaches a team approach to maximize efficiency. </li></ul><ul><li>-Many CADLC teams do well child checks in the same amount of time now than before they were using the screening tools. </li></ul><ul><li>-CADLC provides the screening tools to you at no cost. </li></ul><ul><li>-CADLC provides a website and live support to address questions. </li></ul><ul><li>-CADLC address local referral and early intervention options. </li></ul><ul><li>-You’ll meet the local resources in your community. </li></ul><ul><li>-You’ll discuss ways to improve partnerships in the area. </li></ul><ul><li>-You can’t afford not to screen. </li></ul><ul><li>-Early identification improves care. </li></ul><ul><li>-Early identification saves resources for parents and providers. </li></ul><ul><li>-CADLC provides information on coding, billing, and reimbursement. </li></ul><ul><li>-CADLC has helped many practices generate new revenue. </li></ul><ul><li>Common Concerns </li></ul><ul><li>I don’t have enough time. </li></ul><ul><li>I don’t have the right tools. </li></ul><ul><li>I don’t know where to refer. </li></ul><ul><li>I can’t afford to screen. </li></ul>
  18. 18. Screening Collaborative Results <ul><li>55 sites </li></ul><ul><li>More than 800 potential practitioners </li></ul><ul><li>5 pediatric residency programs </li></ul><ul><li>2 family medicine residency programs </li></ul><ul><li>Continuing Education Credits </li></ul><ul><li>Maintenance of Certification </li></ul>
  19. 19. What we’ve learned about Step One <ul><li>-Content and process both matter. </li></ul><ul><li>-It’s hard work, but it can be done. </li></ul><ul><li>-Community spirit is important. </li></ul>
  20. 20. Step Two: Diagnostic Partnerships <ul><li>A strategy to increase timely access to a standardized, comprehensive diagnostic evaluation </li></ul><ul><ul><li>Psychoeducationa l component </li></ul></ul><ul><ul><li>Medical component </li></ul></ul><ul><li>A strategy that builds on existing local, community-based resources </li></ul><ul><li>A strategy that requires collaboration and communication among families, local physicians, HMG, and LEAs/ESCs </li></ul><ul><li>A strategy that acknowledges the current and future practice of pediatrics (R3P) </li></ul>
  21. 21. How do the diagnostic teams work? <ul><li>Doctors from Step One screen the child. </li></ul><ul><li>If a child fails a screen, they are referred. </li></ul><ul><ul><li>Under three to Help Me Grow. </li></ul></ul><ul><ul><li>Over three to Lead Educational Agency. </li></ul></ul><ul><li>If the child isn’t suspected of having autism, the normal protocol applies. </li></ul>
  22. 22. <ul><li>A standardized, comprehensive diagnostic evaluation should include the following components: </li></ul><ul><ul><li>Health, developmental and behavioral histories (including a 3-generation pedigree & review of systems) </li></ul></ul><ul><ul><li>Physical exam </li></ul></ul><ul><ul><li>Developmental, psychoeducational evaluation </li></ul></ul><ul><ul><li>Determination of the presence of a DSM-IV diagnosis (including a standardized tool) </li></ul></ul><ul><ul><li>Assessments of the family’s knowledge of ASD, challenges, coping skills, and resources/supports </li></ul></ul><ul><ul><li>Lab work </li></ul></ul>-- Johnson, Myers, and the Council on Children with Disabilities, 2008 What if a child is suspected of having autism?
  23. 23. HMG/LEA: The “Enhanced Evaluation” <ul><li>Additional tools for the “enhanced” evaluation: </li></ul><ul><ul><li>The Routines-Based Interview (RBI) </li></ul></ul><ul><ul><li>The Family Quality of Life Survey (FQOL) </li></ul></ul><ul><ul><li>The Autism Diagnostic Observation Schedule (ADOS) </li></ul></ul>
  24. 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. 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. 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. 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. 28. What have we learned about Step Two? <ul><li>Step Two (Diagnostic Partnerships) </li></ul><ul><li>-People think this is the right thing to do. </li></ul><ul><li>-It’s harder than we think it is. </li></ul><ul><li>-Every county is different. </li></ul><ul><li>-Screening and diagnosis go hand in hand. </li></ul><ul><li>-When it works, it works well. </li></ul>
  29. 29. Step 3 <ul><li>Grand Rounds </li></ul><ul><ul><li>Developmental Screening </li></ul></ul><ul><ul><ul><li>6 Hospitals August to November 2008 </li></ul></ul></ul><ul><ul><ul><li>Plan to reach all 8 pediatric and 23 family medicine programs </li></ul></ul></ul><ul><li>Web Based Learning Modules </li></ul><ul><ul><li>Developmental Surveillance and Screening </li></ul></ul><ul><ul><li>The Evidence for Early Intervention </li></ul></ul><ul><ul><li>The Referral Process </li></ul></ul><ul><ul><li>The Model for Improvement </li></ul></ul>
  30. 30. What are we learning about Step 3? <ul><li>Step Three (Grand Rounds) </li></ul><ul><li>-They can serve as infomercials. </li></ul><ul><li>-We’re not sure of their impact. </li></ul>
  31. 31. Step 4 <ul><li>Enhance communication between health care and early and education providers </li></ul><ul><li>Ohio’s Step Up to Quality </li></ul>
  32. 32. What have we learned about Step 4? <ul><li>Step Four (Coordinated Care) </li></ul><ul><li>-Broaden the representation beyond HMG </li></ul><ul><li>-If you get the right people in the room, it can be figured out </li></ul><ul><li>-It only takes 90 minutes. </li></ul>
  33. 33. Step 5: Public Awareness Campaign <ul><li>Raise Awareness </li></ul><ul><li>Share your concerns with your doctor </li></ul><ul><li>Expect developmental screening </li></ul>
  34. 34. Step 5: Public Awareness Campaign <ul><li>Traditional Media </li></ul><ul><li>Social Media (Ohio Autism Project on Twitter) </li></ul><ul><li>www.concernedaboutdevelopment.org </li></ul>
  35. 35. What have we learned about Step 5? <ul><li>Step Five (Public Awareness) </li></ul><ul><li>-It’s not cheap. </li></ul><ul><li>-It takes more time than I thought. </li></ul><ul><li>-It is effective. </li></ul>
  36. 36. What’s Next? <ul><li>Now: Statewide Spread </li></ul><ul><li>Now: Public Awareness Campaign </li></ul><ul><li>September-February: Concerned About Development Learning Collaborative </li></ul><ul><li>April: Diagnostic Partnership Training </li></ul><ul><li>www.concernedaboutdevelopment.org </li></ul><ul><li>[email_address] (614) 846-6258 </li></ul>

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