Child Developmental Screening Initiative Electronic Data Systems Workgroup

1. Child Developmental Screening Initiative Electronic Data Systems Workgroup

2. Tasks • Investigate how existing and developing information systems can be included in comprehensive developmental screening system • Determine who should have access to an integrated screening information system • Determine what data should be recorded and maintained

3. HOW to include existing systems • Early Learning Information System (ELIS) • Web-based early learning data system • Currently in development stage at OEL • Slated for roll-out in 2013 • Will require final state funding during 2012 Legislative Session • Plans for eventual interface with other state data systems, including Florida SHOTS

4. Florida SHOTS • A free, statewide, centralized, online immunization registry that helps health care providers and schools keep track of immunization records • Secure and trusted web-based electronic system • Authorized users (health care providers can input and access data; schools and child care providers can view data) can access up-to-date immunization information

5. Proprietary Systems • Early Steps uses the Battelle Developmental Inventory data system to store and track data on child screening (new data system anticipated next year) • Early Learning Coalitions are beginning to use Ages and Stages Enterprise data system to store and track data on child screening (ELIS will eventually interface with this system)

6. Hillsborough Collaborative Screening Initiative • Screening of 60-65 children once a month in rotating community locations • 35 community-based partners • Use of a locally developed web-based referral and follow-up system • With parent consent, copy of screening results sent to pediatrician (electronically & via mail)

7. Hillsborough Lessons Learned • Local systems can work and can be duplicated in other areas of the state (e.g., similar initiative now in Leon County) • Importance of lead agency for planning & accountability • Recognition of parent choice and provider issues - there is not always the follow through that is recommended

8. CHEER • Children’s Heath Education and Economic Resource (CHEER) – combines electronic health and academic records for students in Miami-Dade County • Stores data for 2 million children • For use by Doctors and Teachers • Partnership – The Children’s Trust, Health Choice Network, Miami-Dade County Public Schools, Ready Schools Miami and Microsoft

9. Other Data Systems • Healthy Start has its own data system for collecting and housing maternal and child screening information • Infant Metabolic Screening Data (collected at birth) is housed in a separate data system • Florida Children and Youth Cabinet Information Sharing System Sub-committee is continuing to investigate the data-sharing system developed by the court system

10. WHO needs access to screening data? • Health Care Professionals • Schools and early learning providers • Families • There can and should be differentiation between those that can input data and those that can view data

11. WHAT data should be recorded and maintained? • Individual child data to ensure • Children are screened • Children receive follow-up assessment and services • There is an assessment of the impact of intervention • Aggregate data for planning and evaluation purposes

12. Challenges • Ensuring compliance with HIPAA and FERPA requirements • Data-sharing barriers between health care professionals and other community partners, including child care providers, relative to perceived credibility and expertise • Importance of linking to the K-12 student identifier

13. Child Developmental Screening Initiative Follow-Up Services Workgroup

14. About This workgroup focuses on strategies for the large number of children screened who could benefit from early intervention but who do not yet qualify for Early Steps or school system services. Strategies such as anticipatory guidance, developmental activities, referrals to high quality early childhood programs like Early Head Start, and ensuring these high risk children don't fall through the cracks.

15. Members • Dr. Mimi Graham – Florida State University (Group Leader) • Dr. Susan Gold – University of Miami • Amanda Moore – Office of Early Learning • Cynthia Fuller – Office of Insurance Regulation • Dr. Barbara Foster – Department of Economic Opportunity • Judy Taylor-Fischer – Agency for Healthcare Administration • Dr. Mercedes Rodriguez – Osceola County Health Department • Dr. Sharon Hennessy – University of Florida • Karen Wiggins – Healthy Start Coalition • Allison M. Parish - Healthy Families Florida • Martha Harbin – Snow Team Project Staff

16. Tasks • For those children who need follow-up services and regardless of whether they qualify for Early Steps, how could the electronic system: • Include data to connect those kids and their parents and/or caregivers to available programmatic and informational sources. • Help ensure there are resources available to enable everyone in the child’s life to be included in the process.

17. Approach • Compile a list of recommended tools and activities for parents and caregivers to use with their children. • Compile of list of local organizations (including non-traditional) that may provide services to these families. • Identify the professionals and/or organizations who should receive the compiled resource information. • Determine marketing plan elements to distribute resourcesto parents and others.

18. #1: Potential RecommendedTools

19. #1: Potential RecommendedTools (Cont.)

20. #2: Preliminary list of existing local organizationsthat may provide services • L.L. Schendel Speech and Hearing Clinic at FSU (http://commdisorders.cci.fsu.edu/speech-hearing-clinic) • PREVENT Program (www.jud11.flcourts.org/SCSingle.aspx?pid=26) • Local Early Learning Coalitions (http://spe.schoolreadiness.org/pe/) • Florida State University First Words Project (http://firstwords.fsu.edu) • Mailman Center for Child Development, University of Miami: • Building Babies’ Brains (http://pediatrics.med.miami.edu/debbie-school/training/continuing-education/) • Debbie Institute (http://pediatrics.med.miami.edu/debbie-school) • Interdisciplinary Screening Program (http://pediatrics.med.miami.edu/mailman-center/clinical-services/ideas) • Early Discovery Service Project (http://pediatrics.med.miami.edu/mailman-center/research/demonstration-projects/early-discovery/) • Linda Ray Intervention Center, University of Miami (www.lindaraycenter.miami.edu) • Dade County Public Schools Florida First Start (http://beckham.dadeschools.net/Special%20Programs/even_start.htm)

21. #2: Preliminary list of existing local organizations that may provide services (Cont.) • Easter Seals Florida (http://fl.easterseals.com/site/PageServer?pagename=FLDR_early_intervention) • Tampa Bay Early Intervention Center • Home-based Early Intervention in Tampa • Igoe-Amar Child Development Center in West Palm Beach • Pinellas County ARC (www.parc-fl.org) • Family Focus – Free Screening Services • Margaret E. Dickins Children’s Technology and Multi-Sensory Room Center • Discovery Learning Center • Florida Children’s Services Council (www.floridacsc.org) • CSC of Broward County • Children’s Board of Hillsborough County • Jacksonville Children’s Commission • CSC of Martin County • The Children’s Trust of Miami-Dade • CSC of Palm Beach County • JWB – CSC of Pinellas county • CSC of St. Lucie County • Florida Outreach Project (FOP) (www.deafblind.ufl.educ) • Space Coast Early Intervention Center (SCEIC (www.sceic.org)

22. #2: Preliminary list of existing state organizations that may provide services (Cont.) • United Way of Florida (www.uwof.org) • The Center for Autism and Related Disabilities (CARD) (www.centerforautism.com) • Florida’s Head Start Collaboration Office – includes Early Head Start(www.floridaheadstart.org) • Florida Office of Early Learning (www.floridaearlylearning.com) • Private insurance: “Habilitative services” (versus rehabilitative services), such as Speech, OT and PT will be included in the essential services to be offered by insurance companies under Federal Affordable Care Act.

23. #3: Identify professionals and/or organizations who should receive the compiled resource information • Pediatricians • County Health Departments • Home visitors • Child care centers • Child protection investigators (DCF and Sheriffs’ Offices) • Community-Based Care managers • Faith-based organizations

24. #4: Marketing Plan Elements • Interface with the Electronic System that Stacy Howard’s workgroup is developing. • Suggested organizations through which to distribute information: • Florida Chapter, American Academy of Pediatrics (www.fcaap.org) • DOH (http://www.doh.state.fl.us/alternatesites/cms-kids/families/early_steps/early_steps.html) • DCF (www.dcf.state.fl.us/children/) • Florida Sheriffs Association (www.flsheriffs.org) • Healthy Families Florida (www.healthyfamiliesfla.org) • Early Head Start/Head Start (www.floridaheadstart.org) • Whole Child Leon (www.wholechildleon.com) • Early learning coalitions (www.earlylearningassociation.org) • Parents as Teachers (www.parentsasteachers.org) • Family Café (www.familycafe.net) • Miami Safe Start Initiative (www.miamisafestartinitiative.org/safestart/)

25. Sponsored by United States Department of Health and Human Services, Administration on Developmental Disabilities and the Florida Developmental Disabilities Council, Inc.