1. National Center for Hearing Assessment and Management
The Status of Early Hearing Detection and Intervention in the United States
Karen Ditty
National Center for Hearing Assessment and Management
Utah State University

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, but statewide
programs
No mandate

5. Percentage of Newborns Screened for Hearing Loss in the United States3
Percentage of Newborns Screened for Hearing Loss in the United States
(Dec 2001) .
Percentage of Births
Screened .
90%+ % %
1 - 20%

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

7. Acceptance By Policy Makers
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

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

9. Why is Early Identification of Hearing Loss so Important?
Hearing loss occurs more frequently than any other birth defect.

10. Rate Per 1,000 of Permanent Childhood Hearing Loss in UNHS Programs
Sample Prevalence
Site Size Per 1000
Rhode Island (3/93 - 6/94) 16,
Colorado (1/ /96) 41,
New York (1/ /97) 69,
Texas (1/94 - 6/97) ,
Hawaii (1/ /96) 9,
New Jersey (1/ /95) 15,

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

12. Why is Early Identification of Hearing Loss so Important?
Hearing occurs more frequently than any other 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
Keller & Bundy (1980)
Math
(n = 26; age = 12 yrs)
Language
Peterson (1981)
Math
(n = 48; age = 7.5 yrs)
Language
Bess & Thorpe (1984)
Social
(n = 50; age = 10 yrs)
Math
Blair, Peterson & Viehweg (1985)
(n = 16; age = 7.5 yrs)
Language
Math
Culbertson & Gilbert (1986)
(n = 50; age = 10 yrs)
Language
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 ,

16. Why is Early Identification of Hearing Loss so Important?
Hearing loss occurs more frequently than any other 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
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,
and normally-hearing parents.
Language abilities measured by parent report using the Minnesota
Child Development Inventory (expressive and comprehension scales)
and the MacArthur Communicative Developmental Inventories
(vocabulary).
Cross-sectional assessment with children categorized in 4 different
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
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. Good work, but I think we might need just a little more detail right
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.

20. Is the Glass Half Empty or Half Full?
More than 21/2 million babies are screened every year prior to discharge
Less than 30 hospitals with UNHS in 1993; compared with more than 2400 today
36 states have passed legislation related to newborn hearing screening
Or half empty?
1,400+ hospitals are not yet screening for hearing loss
More than a 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

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
Culturally Competent Family Support

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. Typical UNHS Screening Protocols (example for 1,000 newborns)
Hearing Loss=3
Normal Hearing=7
Inpatient
Screening
Pass=920
Fail=80
Outpatient
n=80
Diagnosis
n=10
Pass=70
Fail=10
2 Stage
OAE
Hearing Loss=3
Normal Hearing=37
Diagnosis
n=40
Inpatient
Screening
Fail=40
Pass=960
1 Stage
AABR
Diagnosis
n=20
Inpatient
Screening
Pass=980
Fail=20
Hearing Loss=3
Normal Hearing=17
OAE / AABR
1 Stage

24. Protocols Used in Universal Newborn Hearing Screening Programs
Screening Procedures
Percent of newborns
screened
Before Hospital Discharge
After Hospital Discharge
OAE
11.6%
ABR
23.3%
OAE/ABR
6.7%
OAE
OAE
21.4%
OAE
ABR
4.2%
ABR
OAE
2.8%
ABR
ABR
23.2%
6.4%
OAE/ABR
OAE/ABR
Other protocol
0.3%

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. Purposes of an EHDI Data System
Research
Program Improvement
and Quality Assurance
Screening
Diagnosis
Intervention
Medical, Audiological and
Educational

27. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs
Sample Prevalence % of Refers
Site Size Per with Diagnosis
Rhode Island (3/93 - 6/94) 16, %
Colorado (1/ /96) 41, %
New York (1/ /96) 27, %
Utah (7/ /94) , %
Hawaii (1/ /96) 9, %

28. 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/ /96)
(99%)
(10%)
(85%)
(1.3%)
Hawaii
10,584
9,605
1,204
991
121
(1/ /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%)

29. 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 of 2001
33% of 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)

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

31. 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

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

33. Confirmation of Permanent Hearing Loss35
Coplan (1987) 19
Eissman et al. (1987) 30
Gustason (1987) 30
Meadow-Orlans (1987) 24
Yoshinago-Itano (1995) 25
Stein et al. (1990) 31
Mace et al. (1991) 56
O'Neil (1996) 3
Johnson et al. (1997)* 3
Vohr et al. (1998)* 10 20 30 40 50 60 70
Average Age in Months

34. Hawai'i EHDI Progress Age of Identification and Intervention 60 50 40
Age in Months 30 20 10
pre
1992
1993
1994
1995
1996
1997
1998
Year
Data from Hawai’I Zero to Three Project

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

36. 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

37. Percentage of State Coordinators Who Rate Early Intervention Programs in the State as Good or Excellent
For children with:
bilateral severe/profound losses %
bilateral mild/moderate losses %
unilateral losses %

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

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

40. 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

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

42. 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 %
Physicians don’t know enough about
Hearing screening, diagnosis, and intervention %
Shortage of qualified pediatric audiologists 49%

43. 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

44. EHDI Materials Available from “State” Programs
(n=54)
General Screening Brochure states
What To Do If Your Baby Refers states
What To Do If Your Baby has a Hearing Loss 41 states
Guidelines for Audiologic Diagnostic Evaluations 30 states
List of Qualified Pediatric Audiologists 39 states
Brochure about Genetics of Hearing Loss 7 states
Fair or Excellent Availability of Materials in
other Languages states

45. Information Wanted vs. Received by Parents
at Hearing Loss Confirmation
Martin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)
Degree of loss
Auditory system
Amplification
Educational options
Speech/Lang dev
Etiology
Home activities
*Written Information
*Financial Support
*Emotional Support
*Parent Contacts
*Referral Sources 20 40 60 80
100
Wanted
Received