1. Universal Newborn Hearing Screening and Intervention Evaluation Shanna Shulman, PhD Melanie Besculides, DrPH Shanna Shulman, PhD Melanie Besculides, DrPH

2. Acknowledgments Mathematica team: Anna KatzCharlotte Hanson Henry IreysKeith Rathbun Lisa TrebinoEileen Curley Irene Forsman, Federal Project Officer Karl White, National Center for Hearing Assessment and Management Program staff Mathematica team: Anna KatzCharlotte Hanson Henry IreysKeith Rathbun Lisa TrebinoEileen Curley Irene Forsman, Federal Project Officer Karl White, National Center for Hearing Assessment and Management Program staff

3. Presentation Road Map Background Methods Overview of findings Barriers and strategies Program implementation themes Future directions Conclusion Background Methods Overview of findings Barriers and strategies Program implementation themes Future directions Conclusion

4. Conceptual Framework for the Program Newborn Further Evaluation Intervention Newborn Screening Audiologic diagnosis by three months Medical home Family-to-family support S Birth Early intervention by six months Speech, language, social skills development on par with peers at school entry Intervention Goal S Screening before hospital discharge or within one month

5. Program Evaluation Background 90% of infants screened for hearing loss 30-50% receive follow-up screening MPR Evaluation: –Programs progress in achieving goals –Barriers and strategies for improvement 90% of infants screened for hearing loss 30-50% receive follow-up screening MPR Evaluation: –Programs progress in achieving goals –Barriers and strategies for improvement

6. Evaluation Focus Diagnosis Early intervention Medical home Family-to-family support Diagnosis Early intervention Medical home Family-to-family support

7. Evaluation Methods Literature review Survey of state and territorial program coordinators Site visits to 8 state programs (AZ, CA, MA, MN, NE, PA, TN, WY): –UNHSI staff –Hospital staff –AAP Chapter Champion –Audiologists Literature review Survey of state and territorial program coordinators Site visits to 8 state programs (AZ, CA, MA, MN, NE, PA, TN, WY): –UNHSI staff –Hospital staff –AAP Chapter Champion –Audiologists

8. Findings Screening is almost universal Gaps in follow-up remain: –Diagnostic evaluation by 3 months –Link to early intervention –Link to medical home –Link to family-to-family support Screening is almost universal Gaps in follow-up remain: –Diagnostic evaluation by 3 months –Link to early intervention –Link to medical home –Link to family-to-family support

9. Barriers to follow-up Service system capacity Provider knowledge Family challenges in obtaining services Information gaps Service system capacity Provider knowledge Family challenges in obtaining services Information gaps

10. System Capacity: What Is Lacking Equipment to perform screenings Audiologists to perform evaluation Intervention services focused on infant/toddler hearing Family-to-family support services Equipment to perform screenings Audiologists to perform evaluation Intervention services focused on infant/toddler hearing Family-to-family support services

11. Strategies for Lack of Equipment Seek grants to purchase equipment Maintain alternate screening opportunities Seek grants to purchase equipment Maintain alternate screening opportunities

12. Rate of Audiologists per 10,000 Births MT WY ID WA OR NV UT CA AZ ND SD NE CO NM TX OK KS AR LA MO IA MN WI IL IN KY TN MS AL GA FL SC NC VA WV OH MI NY PA DE NJ CT RI MA ME VT NH AK HI Fewer than 2 audiologists per 10,000 births 2 – 2.99 audiologists per 10,000 births More than 4 audiologists per 10,000 births 3 – 3.99 audiologists per 10,000 births DC MD

13. Strategies for Lack of Audiology Services Conduct outreach and training Work to increase reimbursement (commercial and public) Conduct outreach and training Work to increase reimbursement (commercial and public)

14. Strategies for Lack of EI, Family-to-Family Services Implement training, specialized curricula Tap community resources Partner with other organizations Hire regional parent coordinators Implement training, specialized curricula Tap community resources Partner with other organizations Hire regional parent coordinators

15. Provider Knowledge: Barriers Lack of protocols for standardized screening and presentation of results Low volume of patients decreases quality of screening, follow-up, and evaluation services Lack of provider knowledge about UNHSI and key partners Wait-and-see attitude among PCPs Lack of protocols for standardized screening and presentation of results Low volume of patients decreases quality of screening, follow-up, and evaluation services Lack of provider knowledge about UNHSI and key partners Wait-and-see attitude among PCPs

16. Strategies for Lack of Protocols and Low Patient Volume Provide TA to screening hospitals Make follow-up appointment before discharge Concentrate screening in small group Provide ongoing training, particularly for low- volume areas Provide TA to screening hospitals Make follow-up appointment before discharge Concentrate screening in small group Provide ongoing training, particularly for low- volume areas

17. Strategies for Lack of Knowledge, Attitudes Outreach and training Single point of contact to link families to services Education, colleague-to-colleague training Outreach and training Single point of contact to link families to services Education, colleague-to-colleague training

18. Family Barriers to Obtaining Services Pre-authorization requirements, lack of insurance Need to go to unfamiliar location for evaluation Lack of transportation to audiologist Transient living situations and language barriers Pre-authorization requirements, lack of insurance Need to go to unfamiliar location for evaluation Lack of transportation to audiologist Transient living situations and language barriers

19. Strategies to Help Families Get Services Facilitate pre-authorization or enrollment in public assistance programs Establish relationship with audiology center Facilitate pre-authorization or enrollment in public assistance programs Establish relationship with audiology center

20. Strategies to Help Families Get Services Partner with existing programs Develop education materials in other languages Use translation services Hire bilingual staff Partner with existing programs Develop education materials in other languages Use translation services Hire bilingual staff

21. Information Gaps: Barriers Poor communication among hospitals, PCPs, audiologists, and program Data systems not accessible to providers Privacy laws impede agency sharing Poor communication among hospitals, PCPs, audiologists, and program Data systems not accessible to providers Privacy laws impede agency sharing

22. Strategies to Improve Communication Train hospital staff on importance of relaying complete information Use existing data sources to complete missing data fields Use specialized software, metabolic screening cards, or electronic birth certificates to convey results Train hospital staff on importance of relaying complete information Use existing data sources to complete missing data fields Use specialized software, metabolic screening cards, or electronic birth certificates to convey results

23. Strategies to Improve Use of Data Use web-based systems to facilitate real-time transmission of results, contact information, and track follow-up Establish data-sharing procedures Secure family permission for data sharing Use web-based systems to facilitate real-time transmission of results, contact information, and track follow-up Establish data-sharing procedures Secure family permission for data sharing

24. 1. Program Implementation Varies by State Legislation Infrastructure Privacy laws Legislation Infrastructure Privacy laws

25. 2. More Mature Programs Are Farther Along Established reporting relationships Internal data and tracking capabilities Relationships with early intervention and family-to- family support services Effective follow-up strategies Cross-agency communication Established reporting relationships Internal data and tracking capabilities Relationships with early intervention and family-to- family support services Effective follow-up strategies Cross-agency communication

26. 3. Program Priorities on the Right Track Improving data and tracking systems Enhancing provider knowledge Increasing EI service system capacity Improving family services Improving data and tracking systems Enhancing provider knowledge Increasing EI service system capacity Improving family services

27. 4. Infant Hearing Loss Is Low Incidence Volume matters Providers require ongoing training Coordinating entity is important Volume matters Providers require ongoing training Coordinating entity is important

28. Future Program Directions Improve data systems to support surveillance and follow-up Build additional capacity Develop family-to-family support services Promote importance of early detection Improve data systems to support surveillance and follow-up Build additional capacity Develop family-to-family support services Promote importance of early detection

29. As Things Stand Programs poised to take action Model of collaboration in public health Programs poised to take action Model of collaboration in public health