Blindness separates people from things. Deafness separates people from people. --- Helen Keller

1. The Physician’s Role in the Development of Effective Early Hearing Detection and Intervention Programs

2. Blindness separates people from things. Deafness separates people from people. --- Helen Keller

3. Improvements in Hearing Screening Equipment

6. 3 Percentage of Newborns Screened for Hearing in the United States For current data see: http://www.infanthearing.org/status/unhsstate.html

7. States with Legislative Mandates Related to Universal Newborn Hearing Screening Status of UNHS Legislative Mandates States with mandates No mandate, but statewide programs No mandate

8. AAP Task Force on Newborn Infant Hearing • Endorses implementation of universal newborn hearing screening • Defines standards for: • Screening • Tracking & Follow-up • Identification & Intervention • Program Evaluation • Encourages AAP Chapters to provide leadership in developing statewide programs

9. In addition to the AAP, Universal Newborn Hearing Screening Has Been Endorsed by: • National Institutes of Health • Maternal and Child Health Bureau • Centers for Disease Control & Prevention • Joint Committee on Infant Hearing • American Academy of Audiology • American Speech-Language-Hearing Association • National Association of the Deaf

10. Why is Early Identification of Hearing Loss so Important? • Hearing loss is the most frequent birth defect.

11. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence Site Size Per 1000 Rhode Island (3/93 - 6/94) 16,395 1.71 Colorado (1/92 - 12/96) 41,976 2.56 New York (1/95 - 12/97) 69,761 1.95 Texas (1/94 - 6/97) 52,508 2.15 Hawaii (1/96 - 12/96) 9,605 4.15 New Jersey (1/93 - 12/95) 15,749 3.30

12. Incidence per 10,000 of Congenital Defects/Diseases

13. Why is Early Identification of Hearing Loss so Important? • Hearing loss is the most frequent birth defect. • Undetected hearing loss has serious negative consequences.

14. 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.

15. Effects of Unilateral Hearing Loss Normal Hearing Unilateral Hearing Loss Math Keller & Bundy (1980) (n = 26; age = 12 yrs) Language Math Peterson (1981) (n = 48; age = 7.5 yrs) Language Social Bess & Thorpe (1984) (n = 50; age = 10 yrs) Math Blair, Peterson & Viehweg (1985) Language (n = 16; age = 7.5 yrs) Math Culbertson & Gilbert (1986) Language (n = 50; age = 10 yrs) Social Average Results 0th 10th 20th 30th 40th 50th 60th Math = 30th percentile Percentile Rank Language = 25th percentile Social = 32nd percentile

16. Why is Early Identification of Hearing Loss so Important? • Hearing loss is the most frequent birth defect. • Undetected hearing loss has serious negative consequences. • There are dramatic benefits associated with early identification of hearing loss.

17. 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

19. Tremendous ProgressDuring the Last Decade • Less than 30 hospitals with UNHS in 1993; compared with almost 2,500 today • More than 2.5 million babies are screened every year prior to discharge • 36 states have passed legislation related to newborn hearing screening

20. Implementing Effective EHDI Programs out Then a miracle occurs Start Good work, but I think we might need just a little more detail right here.

21. The Other Side of the Coin . . . . • 1,000+ hospitals are not yet screening for hearing loss • Almost 1.5 million babies are NOT screened every year prior to discharge • Existing legislation is of variable quality • Follow-up rates are often alarmingly low • Some hospitals have unacceptably high referral rates

22. Status of EHDI Programs in the US:Universal Newborn Hearing Screening • With 2/3 all babies screened prior to discharge, newborn hearing screening is becoming the standard of care • There are hundreds of excellent programs - - - regardless of the type of equipment or protocol used • Many programs are still struggling with high refer rates and poor follow-up

23. Status of EHDI Programs in the US:Tracking and Data Management • Typically reported “lost to follow-up” rates are 40% to 60% • 75% of states collect some data from hospitals, but only about 1/3 include identifying information --- making follow-up by state impossible • Only 17% of states currently have any linkages with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)

24. Status of EHDI Programs in the US:Audiological Diagnosis • Equipment and techniques for diagnosis of hearing loss in infants continues to improve • Severe shortages in experienced pediatric audiologists delays confirmation of hearing loss • State coordinators estimate only 56.1% “receive diagnostic evaluations by 3 months of age

25. Status of EHDI Programs in the US:Early Intervention • Current system designed to serve infants with bilateral severe/profound losses---but, majority of those identified have mild, moderate, and unilateral losses • Part C of IDEA is severely under utilized • State Coordinators estimate: • 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

26. State Coordinator’s Ratings of Obstacles to Effective EHDI Programs Serious or Extremely Serious Obstacle Unwillingness of third-party payers to reimburse for hearing screening 28% Physicians don’t know enough about newborn hearing screening, diagnosis, and intervention 41% Shortage of qualified pediatric audiologists 49%

27. Results of Statewide Parent Survey about Newborn Hearing Screening Program After all hearing tests were completed, how did you feel? Strongly Agree or Agree total group subgroup* Worried about my baby’s hearing 11% 24% Confused about the results of screening tests 10% 24% Glad hearing screening is done at this hospital 91% 70% Confident the hearing tests were correct 91% 70% Frustrated by how long it took to get results 13% 28% Happy with the professional way screening was done 86% 76% Confident about what I needed to do next 88% 56% Subgroup consisted of parents whose baby did not pass the newborn hearing screen

28. What Can Physicians Do To Help? • AAP Model Legislation • Education • Work with hospitals and Departments of Health • Encourage parents to follow-up

29. Resources are Available to Assist NCHAM’s Implementation Guide

30. www.infanthearing.org

31. www.babyhearing.org

32. Appreciation is expressed to the following groups for assistance in preparing the preceding materials: • American Academy of Pediatrics, Department of Chapter and State Affairs • The National Center for Hearing Assessment and Management, Utah State University • Boys Town National Research Hospital • Maternal and Child Health Bureau Additional information and assistance can be obtained from: • www.infanthearing.org • www.babyhearing.org