Engaging Audiologists in EHDI Data Systems

1. Engaging Audiologists in EHDI Data Systems Les R. Schmeltz, Au.D. NCHAM & Arizona School of Health Sciences Randi Winston, Au.D. NCHAM & The EAR Foundation of Arizona

2. Faculty Disclosure Information • In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in our presentation. • This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA and will not discuss unapproved or “off-label” uses of pharmaceuticals or devices.

3. Goals of EHDI • All newborns will be screened for hearing loss before 1 month of age. • All infants referred from screening will have diagnostic evaluations before 3 months of age. • All infants identified with hearing loss will receive appropriate medical, audiologic, and educational intervention services before 6 months of age. • All infants with hearing loss will have a medical home. • Every state will have a complete EHDI Tracking and Surveillance System to minimize loss to followup. • All families will receive culturally-competent family support. • Every state will do regular systematic monitoring and evaluation to improve the effectiveness of the EHDI program.

4. All newborns will be screened for hearing loss before 1 month of age. • Vast majority of babies ARE screened prior to discharge from newborn nursery • Many programs offer out-patient screening for babies not screened by discharge • Most hospitals are reliable reporters of screening results to EHDI program • Nationally, over 90% of babies are screened

5. All infants referred from screening will have diagnostic evaluations before 3 months of age. 5.57% of babies screened needed audiological evaluations (47 states) 55.09% of babies who needed diagnostic evaluations had hearing status confirmed by 3 months of age (36 states—range was from 5% in 3 states to 90% in 5 states) Monitoring compliance with this goal requires the EHDI program receive appropriate information from audiologists

6. All infants identified with hearing loss will receive appropriate medical, audiologic, and educational intervention services before 6 months of age • Monitoring compliance with this goal requires the EDHI program to receive appropriate data from the medical home, audiologist and early intervention providers.

7. All infants with hearing loss will have a medical home. • Monitoring compliance with this goal requires the EHDI program receive appropriate data from the medical community.

8. Every state will have a complete EHDI Tracking and Surveillance System to minimize loss to followup. • Monitoring this goal is difficult because of the ambiguity of “complete” and the definition of “lost to followup.” • A Tracking and Surveillance System is incomplete if data are not being received from professionals involved in every step of the process

9. All families will receive culturally-competent family support. • Compliance with this goal requires the EHDI program receive feedback from the families served.

10. Every state will do regular systematic monitoring and evaluation to improve the effectiveness of the EHDI program. • This goal requires the EHDI program to have timely, accurate data reporting from screening facilities, audiologists, medical personnel, early intervention providers and families.

11. Required to report to a state agency when a child with permanent hearing loss is identified: • Physicians: • Yes (10 states) No (25 states) • Audiologists: • Yes (25 states) No (19 states) • Others: • Yes (11 states) No (27 states)

12. Comments: “Audiologists encouraged, but not required, to report to ISDH” “Not required, but most audiologists report results to EHDI on form sent to parents recommending the assessment” “Not required. When new Birth Information Network is implemented, the language is supportive of reporting ‘birth defects’ to the health department.” Audiologists are not statutorily required to report to Sound Beginnings, but many do.”

13. Roles of audiologist in EHDI • Receives initial test data • Provides rescreen and diagnostic data • Provides amplification data and monitoring • Coordinates or initiates referral to early intervention provider(s) • Counsels parents regarding communication choices • Sees that infant moves appropriately through the process

14. Without Audiological Data: • EHDI programs cannot track individual babies who do not pass the screening • EHDI programs cannot identify babies with hearing loss who may be in need of additional services • EHDI programs cannot determine if babies at risk for hearing loss do develop a loss • EHDI programs cannot systematically monitor and evaluate the effectiveness of the EHDI program

15. Why data may be missing: • Lack of knowledge: • Program may be tracking infant • EHDI program procedures • Importance of data to program • What data needs to be submitted • Whose job it is to submit the data • Timelines of EHDI program

16. Why data may be missing: • Privacy concerns: • HIPAA • Lack of legislative mandate • Parent does not release information • “Big brother”

17. Why data may be missing • Lack of communication • Audiologists may not be brought “on board” by the EHDI programs • Audiologists may not have a clear understanding regarding the importance of their role in the “big picture” • Mechanisms for reporting audiological outcomes to the EHDI program may not be well established

18. Why data may be missing: • Other reasons: • May not have proper equipment to report • No reimbursement for reporting • Final diagnosis may be pending medical or other referral • May be waiting until all activity is complete (amplification, early intervention)

19. Engaging AZ Audiologists: • Audiologists are pulled into EHDI program as team players and collaborators • Community audiology meetings are held with other EHDI stakeholders • Educating audiologists on the importance of their role relative to the EHDI process • Audiologist’s barriers, issues and needs are discussed • Collaborative problem solving often occurs

20. Engaging AZ Audiologists • Collaboration with audiologists in developing state guidelines for newborn hearing screening and pediatric diagnosis • Annual pediatric workshops are held to assist audiologists in updating skills and to provide networking opportunities • Audiologists are invited to sit on various EHDI taskforces • Annual CDC data shared

21. Engaging AZ Audiologists • Legislation passed in May 2005 requiring the reporting of all data • Developed Audiology reporting form • Only included essential data elements • Site visits made to introduce and implement form

23. Comments and Questions