August 7, 2013

1. Filling a need for connection to the medical home through the CT Medical Home Initiative for Children and Youth with Special Health Care Needs August 7, 2013 Susan Roman, MPH, RN, Program Director, Special Kids Support Center, Connecticut Children's Medical Center

2. Outcome • To identify effective methods of collecting useful data for evaluation of Combating Autism Act Initiative supported activities within the states

3. Learning Objectives • Describe process of determining approach, analyzing existing data, and identifying gaps to create a plan • Describe collection of data from primary care providers and family care practitioners about their screening, identification, and referral practices and linking families to resources • Discuss examples of using data to inform the development of resources & technical assistance • Describe Keeping Children with Autism Spectrum Disorders Safe, CT AAP teleconference/webinar

4. Needs Assessment • Describe current practices • Screening and diagnosis • Assess needs for resources and training

5. Method • Contact providers within the 5 medical home regions • 2 Options • Face to face • Telephone • Needs Assessment

6. Preliminary Results • 17 practices from the 5 regions • 12/17 screened all children ages 18 – 24 months for autism spectrum disorder (ASD) • 13/15 used a standardized tool to screen young children for ASD

7. Recommendation for Children who Screen Positive for ASD • 10/15 refer to Child Development Infoline (for referral to Birth to Three) • 8/16 refer for diagnostic evaluation • 5/15 recommend a one month follow up visit • 8/16 refer to school system if child age 3+

8. Current Barriers to Screening for Practices • Insufficient time during visits • Prolonged wait times for diagnostic appointment • Lack of office policies • Lack of follow through by parents • Difficulty due to language barriers • Low literacy levels • Lack of care coordination

9. Challenges Providers Face in Serving Children with ASD and Families • Care Coordination • Staff training • Education • Resources • Therapies-including behavioral therapy

10. Response to the Needs Assessment • Developed an Autism Resource List for providers and families • *Provided M-CHAT trainings • Provided technical assistance on various barriers (practice flow, education of staff, MOC*) • Developed letter to families regarding Autism evaluations • Development of additional educational modules

11. The Original *M-CHAT EPIC Module • Review of practices in the state: • New practices • Review for previously trained practices? • What other issues were providers struggling with and how could be assist them?

12. Maintenance of Certification (MOC) • Child Health and Development Institute and Connecticut Children’s Medical Center offer an American Board of Pediatrics-approved, Part 4 Credit Quality Improvement Project for CT primary care practices interested in evaluating their autism screening practices. • GOAL: improve ASD screening implementation • Chart audit based quality improvement project • 6 months of data collection (#20 charts) • Review monthly reports • Participate in quality improvement activities http://cme.connecticutchildrens.org//moc.php

13. EPIC Module: Keeping Children with ASD Safe • How this module took shape • Feedback from providers • Research very compelling • Increase in morbidity and mortality rates • Providers at a loss • Parents needed guidance

14. CT AAP Webinar • Information important – need a larger audience • CT AAP webinar – 122 participants • Feedback was positive • 77% not very or somewhat knowledgeable about providing ASD injury prevention and safety information prior to webinar • After the webinar, 83% of respondents reported feeling knowledgeable in the topic http://ct-aap.org/2013

15. Coming Soon: MCHAT “2” • Module developed from needs assessment and meetings with providers • Will address and clarify • Critical questions on the MCHAT • Provider further guidance • Resources

16. Thank You.