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The Status of Early Hearing Detection and Intervention in the United States
Karl R. White, PhDNational Center for Hearing Assessment and Management
Utah State University
www.infanthearing.org
Number of Hospitals Doing Universal Newborn Hearing Screening
3 3 11 26 60 120243
462712
934
2050
-100100300500700900
110013001500170019002100
Nu
mb
er o
f P
rog
ram
s
Improved ScreeningTechniques/Equipment
Why is Implementation of Newborn Hearing Screening Accelerating?
Improved ScreeningTechniques/Equipment
Acceptance byPolicy Makers
Why is Implementation of Newborn Hearing Screening Accelerating?
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
Improved ScreeningTechniques/Equipment
Acceptance byPolicy Makers
Why is Implementation of Newborn Hearing Screening Accelerating?
Increased Number ofSuccessful Programs
Improved ScreeningTechniques/Equipment
Acceptance byPolicy Makers
Why is Implementation of Newborn Hearing Screening Accelerating?
Increased Number ofSuccessful Programs
PublicAwareness/Demand
Blindness separates people from things.Deafness separates people from people.
--- Helen Keller
Why is Early Identification of Hearing Loss so Important?
• Hearing loss is the most frequent birth defect.
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
Incidence per 10,000 of Congenital Defects/Diseases
30
12 11
6 52 1
0
10
20
30
40
Hearing Loss
Cleft lip or palate
Down Syndrome
Limb defects
Spina bifida
Sickle Cell Anemia
PKU
Why is Early Identification of Hearing Loss so Important?
• Hearing loss is the most frequent birth defect.
• Undetected hearing loss has serious negative consequences.
Reading Comprehension Scores of Hearing and Deaf Students
1.0
2.0
3.0
4.0
5.0
6.0
7.0
8.0
9.0
10.0
8 9 10 11 12 13 14 15 16 17 18
Deaf
Hearing
Age in Years
Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.
Gra
de
Eq
uiv
alen
ts
Effects of Unilateral Hearing Loss
MathLanguage
MathLanguage
Social
MathLanguage
MathLanguage
Social
0th 10th 20th 30th 40th 50th 60th
Percentile Rank
Normal Hearing Unilateral Hearing Loss
Keller & Bundy (1980)(n = 26; age = 12 yrs)
Peterson (1981)(n = 48; age = 7.5 yrs)
Bess & Thorpe (1984)(n = 50; age = 10 yrs)
Blair, Peterson & Viehweg (1985) (n = 16; age = 7.5 yrs)
Culbertson & Gilbert (1986)(n = 50; age = 10 yrs)
Average ResultsMath = 30th percentile
Language = 25th percentileSocial = 32nd percentile
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 .62Metropolitan Achievement Test
Math .48Reading .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.
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.
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.
13-18 mos(n = 15/8)
19-24 mos(n = 12/16)
25-30 mos(n = 11/20)
31-36 mos(n = 8/19)
0
5
10
15
20
25
30
35
Identified BEFORE 6 Months
Identified AFTER 6 Months
Expressive Language Scores for Hearing Impaired Children Identified Before and After 6 Months of Age
Chronological Age in Months
Lan
gu
age
Ag
e in
Mo
nth
s
13-18 mos(n = 15/8)
19-24 mos(n = 12/16)
25-30 mos(n = 11/20)
31-36 mos(n = 8/19)
0
50
100
150
200
250
300
Identified BEFORE 6 Months
Identified AFTER 6 Months
Vocabulary Size for Hearing Impaired Children Identified Before and After 6 Months of Age
Chronological Age in Months
Vo
cab
ula
ry S
ize
0.8 1.2 1.8 2.2 2.8 3.2 3.8 4.2 4.80
1
2
3
4
5
6
Identified <6 mos (n = 25)
Identified >6 mos (n = 104)
Age (yrs)
Lan
gu
age
Ag
e (y
rs)
Boys Town National Research Hospital Study of Earlier vs. Later
Moeller, M.P. (1997). Personal communication, [email protected]
129 deaf and hard-of-hearing children assessed 2x each year.
Assessments done by trained diagnostician as normal part of early intervention program.
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
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
Status of EHDI Programs in the United States
• Universal Newborn Hearing Screening
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
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
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%
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%)
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
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
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
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
Key Concepts for Early Intervention
Transactional Developmental Family Focused Holistic Transdisciplinary
Communication Choices
• American Sign Language
• Total Communication
• Auditory Verbal
• Auditory-Oral
• Cued Speech
Technology Decisions
• Audiological Evaluation
• Hearing Aids
• Cochlear Implant
• Assistive Devices
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
What Is a Medical Home?
• A primary care physician provides care which is:
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally effective
EHDI and the Medical Home
Parent Groups
Mental Health
Birthing Hospital
Audiology
Primary Provider
Child/Family
ENT
GeneticsEarly
Intervention Programs
3rd Party Payers
Deaf Community
Services for Hearing Loss
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
What do families want to know when a child is diagnosed with hearing loss….
• What do 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?
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
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