The Status of Early Hearing Detection and Intervention in the United States

1. The Status of Early Hearing Detection and Intervention in the United States Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University www.infanthearing.org

2. Number of Hospitals Doing Universal Newborn Hearing Screening Number of Programs

3. Why is Implementation of Newborn Hearing Screening Accelerating? Improved Screening Techniques/Equipment

4. Why is Implementation of Newborn Hearing Screening Accelerating? Improved Screening Techniques/Equipment Acceptance by Policy Makers

5. Endorsements for Universal Newborn Hearing Screening • National Institutes of Health • American Academy of Pediatrics • 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

6. Why is Implementation of Newborn Hearing Screening Accelerating? Improved Screening Techniques/Equipment Increased Number of Acceptance by Successful Programs Policy Makers

7. Why is Implementation of Newborn Hearing Screening Accelerating? Improved Screening Techniques/Equipment Acceptance by Increased Number of Policy Makers Successful Programs Public Awareness/Demand

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

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

10. 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

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

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

13. 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.

14. 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

15. Effects of Mild Fluctuating Conductive Hearing Loss Teele, et al., 1990 194 children followed prospectively from 0-7 years. ) Days child had otitis media between 0-3 years assessed during normal visits to physician. ) Data on intellectual ability, school achievement, and language competency individually ) measured at 7 years by "blind" diagnosticians. Results for children with less than 30 days OME were compared to children with more than ) 130 days adjusted for confounding variables. Effect Size for Outcome Measure Less vs. More OME WISC-R Full Scale .62 Metropolitan Achievement Test Math .48 Reading .37 Goldman Fristoe Articulation .43 Teele, D.W., Klein, J.O., Chase, C., Menyuk, P., Rosner, B.A., and the Greater Boston Otitis media Study Group (1990). Otitis media in infancy and intellectual ability, school achievement, speech, and language at age 7 years. The Journal of Infectious Diseases , 162 , 685-694.

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. Yoshinaga-Itano, et al., 1996 Compared language abilities of hearing-impaired children identified 6 before 6 months of age (n = 46) with similar children identified after 6 months of age (n = 63). All children had bilateral hearing loss ranging from mild to profound, 6 and normally-hearing parents. Language abilities measured by parent report using the Minnesota 6 Child Development Inventory (expressive and comprehension scales) and the MacArthur Communicative Developmental Inventories (vocabulary). Cross-sectional assessment with children categorized in 4 different 6 age groups. Yoshinaga-Itano, C., Sedey, A., Apuzzo, M., Carey, A., Day, D., & Coulter, D. (July 1996). The effect of early identification on the development of deaf and hard-of-hearing infants and toddlers . Paper presented at the Joint Committee on Infant Hearing Meeting, Austin, TX.

18. Expressive Language Scores for Hearing Impaired Children Identified Before and After 6 Months of Age 35 30 25 Language Age in Months 20 15 10 Identified BEFORE 6 Months 5 Identified AFTER 6 Months 0 13-18 mos 19-24 mos 25-30 mos 31-36 mos (n = 15/8) (n = 12/16) (n = 11/20) (n = 8/19) Chronological Age in Months

19. Vocabulary Size for Hearing Impaired Children Identified Before and After 6 Months of Age 300 250 200 Vocabulary Size 150 100 Identified BEFORE 6 Months 50 Identified AFTER 6 Months 0 13-18 mos 19-24 mos 25-30 mos 31-36 mos (n = 15/8) (n = 12/16) (n = 11/20) (n = 8/19) Chronological Age in Months

20. 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

21. Tremendous ProgressDuring the Last Decade • Less than 30 hospitals with UNHS in 1993; compared with more than 2000 today • More than 2 million babies are screened every year prior to discharge • 34 states have passed legislation related to newborn hearing screening

22. The Other Side of the Coin . . . . • 2,200 hospitals are not yet screening for hearing loss • Almost 2 million babies are NOT screened every year prior to discharge • Existing legislation is of variable quality • Only 9 states (accounting for 7% of the births) have implemented reasonable statewide programs • Follow-up rates are often alarmingly low • Some hospitals have unacceptably high referral rates

23. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening

24. Universal Newborn Hearing Screening • With over half of all babies are screened prior to discharge, has newborn hearing screening become 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

25. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System

26. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of Refers Site Size Per 1000 with Diagnosis Rhode Island (3/93 - 6/94) 16,395 1.71 42% Colorado (1/92 - 12/96) 41,976 2.56 48% New York (1/96 - 12/96) 27,938 1.65 67% Utah (7/93 - 12/94) 4,012 2.99 73% Hawaii (1/96 - 12/96) 9,605 4.15 98%

27. Tracking "Refers" is a Major Challenge (continued) Initial Rescreen Births Screened Refer Rescreen Refer Rhode Island 53,121 52,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%) Hawaii 10,584 9,605 1,204 991 121 (1/96 - 12/96) (91%) (12%) (82%) (1.3%) New York 28,951 27,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)

28. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System • Appropriate and Timely Diagnosis of the Hearing Loss

29. Audiological Diagnosis • Equipment and techniques for diagnosis of hearing loss in infants continues to improve • Severe shortages in experienced pediatric audiologists are delaying confirmation of hearing loss • Most states are having serious problems linking babies with diagnostic follow-up

30. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System • Appropriate and Timely Diagnosis of the Hearing Loss • Prompt Enrollment in Appropriate Early Intervention

31. Early Intervention • Part C of IDEA is an under used resource • Services are generally quite good for babies with severe profound bilateral loss, but less adequate for babies with more moderate loss

32. Key Concepts for Early Intervention • Transactional • Developmental • Family Focused • Holistic • Transdisciplinary

33. Communication Choices • American Sign Language • Total Communication • Auditory Verbal • Auditory-Oral • Cued Speech

34. Technology Decisions • Audiological Evaluation • Hearing Aids • Cochlear Implant • Assistive Devices

35. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System • Appropriate and Timely Diagnosis of the Hearing Loss • Prompt Enrollment in Appropriate Early Intervention • A Medical Home for all Newborns

36. What Is a Medical Home? • A primary care physician provides care which is: • Accessible • Family-centered • Comprehensive • Continuous • Coordinated • Compassionate • Culturally effective

37. EHDI and the Medical Home Birthing Hospital Audiology Parent Groups Mental Health PrimaryProvider Child/Family ENT 3rd Party Payers Deaf Community Early Intervention Programs Genetics Services for Hearing Loss

38. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System • Appropriate and Timely Diagnosis of the Hearing Loss • Prompt Enrollment in Appropriate Early Intervention • A Medical Home for all Newborns • Culturally Competent Family Support

39. What do families want to know when a child is diagnosed with hearing loss…. • Whatdo we do next? • When must we take action? • Where do we get more information? • How do we decide? • Who will help us? • Why do we need early intervention?

40. Emotions of Families with a Deaf orHard of Hearing Baby • (grief)Reactions to Unexpected Diagnosis • (pressure)Urgency of Communication Decisions Search • (confusion)Search for Experienced Professionals • (isolation)Availability of Services and Support

41. Status of EHDI Programs in the United States • Universal Newborn Hearing Screening • Effective Tracking and Follow-up as a part of the Public Health System • Appropriate and Timely Diagnosis of the Hearing Loss • Prompt Enrollment in Appropriate Early Intervention • A Medical Home for all Newborns • Culturally Competent Family Support • Elimination of geographic and financial barriers to service access