Transcript The Status of Early Hearing Detection and Intervention in the United States Karl R.

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
90
2050
934
712
462
t)
00
(e
s
99
19
98
19
97
19
96
19
95
19
94
19
93
19
19
19
60
26
11
92
3
91
3
243
120
20
or
ea
rli
er
2100
1900
1700
1500
1300
1100
900
700
500
300
100
-100
19
Number of Programs
Number of Hospitals Doing Universal
Newborn Hearing Screening
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Acceptance by
Policy Makers
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
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Acceptance by
Policy Makers
Increased Number of
Successful Programs
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Acceptance by
Policy Makers
Increased Number of
Successful Programs
Public
Awareness/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
Site
Sample
Size
Prevalence
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
40
30
30
20
5
6
10
11
12
1
2
0
ia
m
U
ne
lA
PK
el
C
le
ck
a
Si
fid
bi
a
in
s
Sp
ct
fe
de
e
b
m
m
ro
Li
nd
Sy
te
n
la
ow
pa
D
or
lip
ft
le
ss
C
Lo
g
rin
ea
H
Why is Early Identification of
Hearing Loss so Important?
• Hearing loss is the most frequent
birth defect.
• Undetected hearing loss has serious
negative consequences.
Grade Equivalents
Reading Comprehension Scores
of Hearing and Deaf Students
10.0
9.0
8.0
7.0
6.0
5.0
4.0
3.0
2.0
1.0
Deaf
Hearing
8
9
10
11
12
13
14
15
16
17
18
Age in Years
Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.
Effects of Unilateral Hearing Loss
Normal Hearing
Keller & Bundy (1980)
(n = 26; age = 12 yrs)
Math
Language
Peterson (1981)
(n = 48; age = 7.5 yrs)
Math
Language
Bess & Thorpe (1984)
(n = 50; age = 10 yrs)
Social
Blair, Peterson & Viehweg (1985)
(n = 16; age = 7.5 yrs)
Math
Language
Culbertson & Gilbert (1986)
(n = 50; age = 10 yrs)
Math
Language
Social
Average Results
Math = 30th percentile
Language = 25th percentile
Social = 32nd percentile
0th
10th
20th
Unilateral Hearing Loss
30th
40th
Percentile Rank
50th
60th
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.
Outcome Measure
WISC-R Full Scale
Metropolitan Achievement Test
Math
Reading
Goldman Fristoe Articulation
Effect Size for
Less vs. More OME
.62
.48
.37
.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
6 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).
6 All children had bilateral hearing loss ranging from mild to profound,
and normally-hearing parents.
6 Language abilities measured by parent report using the Minnesota
Child Development Inventory (expressive and comprehension scales)
and the MacArthur Communicative Developmental Inventories
(vocabulary).
6 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.
Language Age in Months
Expressive Language Scores for Hearing Impaired
Children Identified Before and After 6 Months of Age
35
30
25
20
15
10
Identified BEFORE 6 Months
Identified AFTER 6 Months
5
0
13-18 mos
(n = 15/8)
19-24 mos
(n = 12/16)
25-30 mos
(n = 11/20)
Chronological Age in Months
31-36 mos
(n = 8/19)
Vocabulary Size for Hearing Impaired Children
Identified Before and After 6 Months of Age
Vocabulary Size
300
250
200
150
100
Identified BEFORE 6 Months
Identified AFTER 6 Months
50
0
13-18 mos
(n = 15/8)
19-24 mos
(n = 12/16)
25-30 mos
(n = 11/20)
Chronological Age in Months
31-36 mos
(n = 8/19)
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.
Language Age (yrs)
6
Identified <6 mos (n = 25)
Identified >6 mos (n = 104)
5
4
3
2
1
0
0.8
1.2
1.8
2.2
2.8
3.2
3.8
Age (yrs)
Moeller, M.P. (1997).Personal communication
, [email protected]
4.2
4.8
Tremendous Progress
During 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
Size
Prevalence
Per 1000
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%
Site
% of Refers
with Diagnosis
Tracking "Refers" is a Major Challenge
(continued)
Initial
Refer
Rescreen
Rescreen
Refer
Births
Screened
Rhode Island
(1/93 - 12/96)
53,121
52,659
(99%)
5,397
(10%)
4,575
(85%)
677
(1.3%)
Hawaii
(1/96 - 12/96)
10,584
9,605
(91%)
1,204
(12%)
991
(82%)
121
(1.3%)
New York
(1/96-12/96)
28,951
27,938
(96.5%)
1,953
(7%)
1,040
(53%)
245
(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
Birthing
Hospital
Parent Groups
Audiology
Mental Health
Primary
Provider
3rd Party
Payers
ENT
Child/Family
Deaf
Community
Services for
Hearing Loss
Early
Intervention
Programs
Genetics
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 or
Hard 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