1. 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

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

3. Percentage of Births Screened for Hearing Before Discharge Number of Programs

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

5. . Status of Universal Newborn Hearing Screening in the United States (Dec 2001). Percentage of Births Screened 90%+ 21 - 50% 1 - 20% 3 51 - 90%

6. 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

7. Typical UNHS Screening Protocols (example for 1,000 newborns) Hearing Loss=3 Normal Hearing=37 Diagnosis n=40 Inpatient Screening Fail=40 Pass=960 1 Stage AABR Hearing Loss=3 Normal Hearing=7 Inpatient Screening Pass=920 Fail=80 Outpatient Screening n=80 Diagnosis n=10 Pass=90 Fail=10 2 Stage OAE Diagnosis n=20 Inpatient Screening Pass=980 Fail=20 Hearing Loss=3 Normal Hearing=17 1 Stage OAE / AABR

8. Protocols Used in Universal Newborn Hearing Screening Programs Screening Procedures Before Hospital Discharge After Hospital Discharge Percent of newborns screened OAE-------11.6% ABR-------23.3% OAE/ABR------- 6.7% OAE 21.4% OAEABR4.2% ABROAE2.8% ABR 23.2% OAE/ABR 6.4% Other protocol ---------- 0.3%

9. Efficiency of Early Hearing Detection and Intervention 1999 2000 2001(6 mos) (n=43,547) (n=46,771) (n=23,307) Inpatient Refer 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% % of babies who complete Diagnostic 33 of 133 65 of 165 12 of 41* Eval & have permanent hearing loss 24.8%39.4%29.3% Number of babies still in process 224 215 69 *only 3 months worth of data

10. 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

11. 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) 16,3951.71 42% Colorado (1/92 - 12/96) 41,9762.56 48% New York (1/96 - 12/96) 27,9381.65 67% Utah (7/93 - 12/94) 4,0122.99 73% Hawaii (1/96 - 12/96) 9,6054.15 98%

12. Tracking and Data Management 75% of states report at least some hospitals submit data to state about results of their screening program For those getting data, information was submitted for 62% of the births in last quarter 33% if submissions do not include identifying information --- making follow-up by state impossible Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)

13. 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

14. 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 56.1% receive diagnostic evaluations by 3 months of age

15. Availability of Pediatric Audiolgists Number of states Pediatric Audiolgists per 10,000 Births per year

16. EHDI Materials Available from State Programs (n=54) General Screening Brochure 39 states What To Do If Your Baby Refers 35 states What To Do If Your Baby has a Hearing Loss41 states Guidelines for Audiologic Diagnostic Evaluations 30 states List of Qualified Pediatric Audiologists39 states Brochure about Genetics of Hearing Loss 7 states Fair or Excellent Availability of Materials in other Languages 34 states

17. Average Age in Months 3 3 35 19 30 24 25 31 56 Coplan (1987) Eissman et al. (1987) Gustason (1987) Meadow-Orlans (1987) Yoshinago-Itano (1995) Stein et al. (1990) Mace et al. (1991) O'Neil (1996) Johnson et al. (1997)* Vohr et al. (1998)* 010203040506070 Confirmation of Permanent Hearing Loss

18. 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

19. Early Intervention Part C of IDEA is an under used resource 96% of state coordinators know who the Part C coordinator is 74% of states have someone on the IDEA Interagency Coordinating Council with experience / expertise in hearing loss with infants State Coordinators estimate: – 53% of infants with hearing loss are enrolled in EI programs before 6 months of age –31% of states have adequate range of choices for type of EI programs

20. Percentage of State Coordinators Who Rate Early Intervention Programs in His/Her State as Good or Excellent For children with: bilateral severe/profound losses 63% bilateral mild/moderate losses 56% unilateral losses46%

21. 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

22. EHDI and the Medical Home 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

23. State Coordinators Ratings of Obstacles to Effective EHDI Programs Serious or Extremely Serious Obstacle Unwillingness of third-party payers to reimburse for hearing screening 28% Physicians dont know enough about Hearing screening, diagnosis, and intervention 41% Shortage of qualified pediatric audiologists49%

24. 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

25. Parents Attitudes About Newborn Hearing Screening After all hearing tests were completed, how did you feel? Strongly Agree or Agree Worried about my babys hearing 11% Confused about the results of screening tests 10% Glad hearing screening is done at this hospital91% Confident the hearing tests were correct 91% Frustrated by how long it took to get results13% Happy with the professional way screening was done86% Confident about what I needed to do next 88%

26. If the analysis is limited to those whose babies did not pass the inpatient or outpatient screen After all hearing tests were completed, how did you feel? Strongly Agree or Agree total group subgroup Worried about my babys hearing 11%24% Confused about the results of screening tests 10%24% Glad hearing screening is done at this hospital91%70% Confident the hearing tests were correct 91%70% Frustrated by how long it took to get results13%28% Happy with the professional way screening was done86%76% Confident about what I needed to do next 88%56%

27. Wanted Received

28. I am a great believer in luck, and I find that the harder I work, the more I have of it. ---Thomas Jefferson