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

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 Grade Equivalents Age in Years Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.

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. Boys Town National Research Hospital Study of Earlier vs. Later 129 deaf and hard-of-hearing children assessed 2x each year. Assessments done by trained diagnostician as normal part of early intervention program. 6 Identified <6 mos (n = 25) 5 Identified >6 mos (n = 104) 4 3 Language Age (yrs) 2 1 0 0.8 1.2 1.8 2.2 2.8 3.2 3.8 4.2 4.8 Age (yrs) Moeller, M.P. (1997). Personal communication , moeller@boystown.org

9. NIH Consensus Panel Early Identification of Hearing Impairment in Infants and Young Children March, 1993 The consensus panel concluded thatall 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.

10. EHDI Program Goals ▣All infants will be screened forhearing 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 ▣ Medical Home ▣ Diagnostic Audiology ▣ Early Intervention ▣ Family Support ▣ Tracking and Data Management

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

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

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

15. ▣Universal Newborn Hearing Screening - Legislation

16. ▣Universal Newborn Hearing Screening +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.

17. ▣Universal Newborn Hearing Screening 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 ononly 3 months of available data

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

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

20. ▣Medical Home – Primary Care Provider Education

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

22. ▣ Medical Home – Follow-up

23. ▣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 -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 + Some families are experiencing the benefits of early identification and intervention

26. ▣Early Intervention - 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 - Current system designed to serve infants with bilateral severe/profound losses---but, majority of those identified have mild, moderate, and unilateral losses

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

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

29. ▣ EHDI Data Management, Tracking and Follow-up +75% of states receive screening data from some hospitals -- information submitted for 62% of births in 2001 - 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)

30. ▣ Where do we go from here?