1. Early Hearing Detection and Intervention (EHDI) ~ Challenges and Opportunities ~

2. Why is early identification of hearing loss so important? Hearing loss occurs more frequently than any other birth disorder.

3. Incidence per 10,000 of Congenital Disorders/Diseases

4. Why is early identification of hearing loss so important? Hearing occurs more frequently than any other birth disorder. Undetected hearing loss has serious, negative consequences.

5. Reading Comprehension Scores of Hearing and Deaf Students Age in Years Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press. Grade Equivalents

6. Why is early identification of hearing loss so important? Hearing occurs more frequently than any other birth disorder. Undetected hearing loss has serious negative consequences. There are dramatic benefits associated with early identification of hearing loss.

7. Benefits of Early Identification

8. 0.81.21.82.22.83.23.84.24.8 0 1 2 3 4 5 6 Identified <6 mos (n = 25) Identified >6 mos (n = 104) Age (yrs) Language Age (yrs) Boys Town National Research Hospital Study of Earlier vs. Later Moeller, M.P. (1997).Personal communication, moeller@boystown.org 129 deaf and hard-of-hearing children assessed 2x each year. Assessments done by trained diagnostician as normal part of early intervention program.

9. Early Identification of Hearing Impairment in Infants and Young Children March, 1993 The consensus panel concluded that all infants should be screened for hearing Impairment...this will be accomplished most efficiently by screening prior to discharge from the well-baby nursery. Infants who fail...should have a comprehensive hearing evaluation no later than 6 months of age. NIH Consensus Panel

10. EHDI Program Goals All infants will be screened for hearing loss at birth or before 1 month of age. Infants not passing the screening will receive appropriate audiologic and medical evaluation before 3 months of age. Infants and their parents will be linked with a medical home and culturally competent family support. All infants with confirmed permanent hearing loss will begin receiving early intervention services before 6 months of age. Statewide data and tracking systems will be established to monitor the quality of screening services and to help ensure that children and families receive the follow-up services they need.

11. EHDI Program Components Universal Newborn Hearing Screening Universal Newborn Hearing Screening Medical Home Medical Home Diagnostic Audiology Diagnostic Audiology Early Intervention Early Intervention Family Support Family Support Tracking and Data Management Tracking and Data Management

12. Technological advances have made it possible to conduct highly reliable physiological hearing screening of children as young as a few hours old. Universal Newborn Hearing Screening – Universal Newborn Hearing Screening – Technology Technology AABR (Automated Auditory Brainstem Response) OAE (Otoacoustic Emissions)

13. Percentage of Newborns Screened for Hearing Prior to Discharge Universal Newborn Hearing Screening Universal Newborn Hearing Screening

14. 37 States Have Legislative Mandates Related to Universal Newborn Hearing Screening States with mandates No mandate No mandate, but statewide programs Universal Newborn Hearing Screening Universal Newborn Hearing Screening

15. Universal Newborn Hearing Screening - Universal Newborn Hearing Screening - Legislation Legislation

16. + There are hundreds of excellent universal newborn hearing screening programs operating nationwide. + With almost 90% of all babies being screened prior to discharge, newborn hearing screening is becoming the accepted standard of care. - Many programs are still struggling with high refer rates and poor follow-up. Universal Newborn Hearing Screening Universal Newborn Hearing Screening

17. 1999 2000 2001(6 mos.) (n=43,547) (n=46,771) (n=23,307) Inpatient Pass Rates (state average) 85.2%85.5%87.5% 10 most effective hospitals 92.8%93.4%93.7% 10 least effective hospitals 70.7%63.4%74.4% Outpatient completion (state average) 70.1%67.1%68.3% 10 most effective hospitals 94.5%95.9%94.7% 10 least effective hospitals 45.3%52.9%58.08% Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110* Evaluations (state average) 37.3%43.4%40% *based on only 3 months of available data Universal Newborn Hearing Screening Universal Newborn Hearing Screening

18. Medical Home Medical Home Accessible Family-centered Comprehensive Continuous Coordinated Compassionate Culturally effective A primary care physician provides care which is:

19. Parent Groups Mental Health Birthing Hospital Audiology Primary Provider Child/Family ENT Genetics Early Intervention Programs 3rd Party Payers Deaf Community Services for Hearing Loss

20. Medical Home – Primary Care Provider Medical Home – Primary Care Provider Education Education

21. Medical Home – Strategies for Improving Medical Home – Strategies for Improving Follow-up Follow-up

22. Medical Home – Follow-up Medical Home – Follow-up

23. Diagnostic Audiology Diagnostic Audiology + Equipment and techniques for diagnosis of hearing loss in infants continues to improve + States are developing guidelines to identify audiologists who can appropriately serve infants and young children

24. Diagnostic Audiology Diagnostic Audiology - Severe shortages in experienced pediatric audiologists delays confirmation of hearing loss - State EHDI Coordinators estimate only 56.1% receive diagnostic evaluations by 3 months of age

25. Early Intervention Early Intervention + Some families are experiencing the benefits of early identification and intervention

26. Early Intervention Early Intervention - Current system designed to serve infants with bilateral severe/profound losses---but, majority of those identified have mild, moderate, and unilateral losses - Only 53% of infants with hearing loss are enrolled in EI programs before 6 months of age - Only 31% of states have adequate range of choices for EI programs

27. Family Support Family Support (grief) Reactions to unexpected diagnosis (pressure) Urgency of communication decisions Common emotions of families upon learning that their child has a hearing loss:

28. Family Support Family Support (confusion) Search for experienced professionals (isolation) Availability of services and support Common emotions of families upon learning that their child has a hearing loss:

29. EHDI Data Management, Tracking and EHDI Data Management, Tracking and Follow-up Follow-up - 33% of submissions have no identifying data -- making follow-up by state EHDI staff impossible - Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, Heelstick, EI, Immunizations) + 75% of states receive screening data from some hospitals -- information submitted for 62% of births in 2001

30. Where do we go from here? Where do we go from here?