Transcript Slide 1

Beyond Newborn Screening:
Working with Children Who
Are Deaf
and Hard of Hearing
and Their Families
Early Intervention Conference
Roanoke, 2006
Leslie Hutcheson Prince
Virginia Department for the Deaf and Hard of Hearing
Debbie Pfeiffer
Virginia Department of Education
“Beyond Newborn Hearing
Screening:
Meeting the Educational
and Health Care Needs of
Infants and Young Children
with Hearing Loss in
America”
Consensus Conference on
Effective Educational and
Health Care Intervention for
Infants and Young Children
with Hearing Loss, 2004
• Dorothy K. Marge, Ph.D. and Michael Marge,
Ed.D., Co-Editors
• Published June, 2005
• This report in its entirety can be found at:
http://www.upstate.edu/pmr/beyond_newborn.pdf
Recommendations were
categorized as follows:
• Elements of a model educational program of services
• Best approaches to implement a model educational
program of services with a recommended research
agenda
• Elements of a model health care program of services
• Best approaches to implement a model health care
program of services with a recommended research
agenda
• Ways in which education and health care may
combine and coordinate their efforts for benefit of the
child and family
Participant Outcomes:
• Learn more about the recommendations
made at the National Consensus Conference
for implementing an effective early
intervention program for children who are
deaf or hard of hearing and their families
• Become familiar with materials available
through the VDDHH lending library for use in
early intervention with families of children
who are deaf or hard of hearing
• Leave with many new resources!
Effective Child Find is
a key element of a
Model Educational
Program for children
who are deaf or hard
of hearing
Would you like to know why?
The research says it all…
Language Age in Months
35
Expressive Language Scores for Hearing Impaired
Children Identified Before and After 6 Months of Age
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
(NCHAM)
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
50
Identified BEFORE 6 Months
Identified AFTER 6 Months
0
13-18 mos
(n = 15/8)
19-24 mos
(n = 12/16)
25-30 mos
(n = 11/20)
Chronological Age in Months
(NCHAM)
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
And in Virginia, this
research was a key
influence in the
establishment of the Early
Hearing Detection and
Intervention (EHDI)
program.
Overview of EHDI
• The goal of the Virginia Early Hearing
Detection and Intervention program is
to identify congenital hearing loss in
children before three months of age
and to assure enrollment in appropriate
services early intervention services
before six months of age.
Overview, cont.
• The Code of Virginia requires that all hospitals with
newborn nurseries and all hospitals with neonatal
intensive care services will screen the hearing of all
newborns prior to discharge and report to the Virginia
Department of Health.
• Hospitals are also required to inform the parent and
the child's primary health care provider about the
infant's risk status and/or screening results and
recommendations for follow-up.
Overview, cont.
• Persons who provide audiological services are
required to: 1) report children who are at risk
for hearing loss, children who fail to pass a
hearing screening and children identified with
hearing loss to the Virginia Department of
Health; and, 2) to give parents information
about hearing loss, including choices about
learning communication, and to refer them to
local early intervention services.
But, remember, the system
must be “effective”
• So, Virginia has the law in place but is
our system effective?
• Data may give us some insight.
Data
2004
80.3 % of infants who failed screening received follow
up
1.9% of newborns were reported with one or more risk
indicators
84 infants with hearing loss
Median age at diagnosis, 3.9 mo.
2005 (PRELIMINARY)
78% of infants who failed screening received follow up
1.9% of newborns were reported with one or more risk
indicators
76 infants with hearing loss
Median age at diagnosis, 4.0 mo.
Five Year Trends
Percentage of Referred Infants Receiving Diagnostic Audiologic
Evaluation
1999 - 2003
Percentage
100.0
80.0
60.0
40.0
20.0
0.0
1999
2000
2001
2002
2003
2004
Year of Birth
Diagnostic Audiologic Evalution Before 3 Months of Age
Total Diagnostic Audiologic Evalution
So, 77% of those infants
referred for an audiological
assessment are getting one,
and 70% are getting it before
3 months of age.
THAT’S GOOD.
But, then what?
Finding some of them is not
enough!
• Remember, Virginia Law requires that
the audiologist refer the family to early
intervention services.
• And the Consensus Report notes that
the final element of a model program is:
“Certified and qualified
service providers with
expertise in working with
infants and young children
who are deaf or hard of
hearing.”
What are the
components of a quality
early intervention
program for families of
children who are deaf
or hard of hearing?
Recommendation 1
• Family involvement has a
significant impact on a child’s
progress and therefore, a
family-centered approach
should be used for infants and
young children with hearing
loss.
Possible Effects of Hearing Loss on
Parent-Child Relationship:
• Prior to
diagnosis
– Reduced
communication
and interaction
• Following
diagnosis
– Strong emotions
• May interrupt
process of
attachment
Emotional Responses
of Family
• Some deaf parents may be relieved
• Experiences surrounding the initial diagnosis
may include:
– Profound sense of personal loss
– Disillusionment
– Reported “blurred memory” - bewilderment
– Shock
– Anger
– Guilt
Grieving Process
“Families with Deaf
Children: Discovering
Your Needs & Exploring
Your Choices”
and
“Families with Hard of
Hearing Children: What
If Your Child Has A
Hearing Loss?”
Published by Boys Town Press, 1997
Recommendation #2:
• The choice of communication
approach and language system
and educational setting is a
process that requires
collaboration between parents
and specifically trained
professionals (Moeller &
Condon, 1994)
Communication Options
•
•
•
•
•
Total Communication
Cued Speech
Oral (Auditory-Oral, Aural/Oral)
Auditory-Verbal (Unisensory)
American Sign
Language/English as a Second
Language (bi-bi approach)
Some Resources!
• Choices in Deafness: A Parents’ Guide
to Communication Options by Sue
Schwarz (book)
• SKI HI Curriculum
• “Beginnings: Communication Choices”
(videotape)
• “Aural-Oral and Sign Options for Hearing
Families in Early Intervention”, HOPE, Inc
• “Introduction to American Sign Language” and
“ASL for Families”, Video, HOPE, Inc
• “Discovering Cued Speech: Instructional
Video and Workbook”
• “SKI HI Total Communication Videotape
Program” (10 videos with 3 lessons on each)
Recommendation 3:
• Provide proactive, comprehensive and
ongoing audiologic management, both
for the hearing loss and the applied
technology.
“Statewide loaner hearing aid
bank should be created.”
• Virginia Hearing Aid Loan Bank
• Virginia Department of Health established loan
program using federal grant funds
• Bridge the gap between diagnosis and
personal hearing aid or FM system acquisition
• Any child with hearing loss, under age 18, is
eligible
Virginia Hearing Aid Loan Bank
• Parent submits loan application in conjunction
with audiologist
• Loan period of six months, with additional sixmonth extension possible
• As of the end of 2005, 26 children have
received loaners; 16 audiologists participated
• Unused FM systems have been traded for an
additional 23 Phonak and Oticon hearing aids.
Virginia Hearing Aid Loan Bank
• Management Contact:
Blue Ridge Care Connection for Children
c/o Lisa Powley
PO Box 800421
Charlottesville, VA 22908
434-924-0222, 1-800-251-3627
[email protected]
Funding When the Loan
Ends
• Consumer Services Fund
– http://atlfa.org/csf.htm
• Assistive Technology Loan Fund Authority
– http://atlfa.org
• VDDHH Hearing Aid Funding Packet
• Private Insurance
• Medicaid/FAMIS
Other Technologies Are
Important as Well
• TTYs, telephone ring signalers, bedshakers (alarm clocks), visual smoke
detectors.
• Some devices available through VDDHH
Technology Assistance Program (TAP).
• Others available for demo through
VDDHH TAPLOAN sites.
Recommendation #4:
Develop guidelines for increasing
or decreasing placement in
mainstream education settings
based on the child’s
communication and academic
development.
Recommendation # 5:
The specialized and technological
needs of infants and children with
hearing loss are unique and require
a professional with specific training
in providing services for them.
For More Information:
• Radford University – Coursework for
Hearing Impaired Licensure
– http://www.radford.edu/~ebaustin/
• AGBell/UNC “First Years” Program
– www.firstyears.org
• UNC Greensboro Distance Learning
– http://center.uncg.edu
• Institute for Hard of Hearing and Deaf
– http://cha.nu.edu/IHHD/ProDev/Infant.html
Training Opportunity
• Ann Hughes,
Partnership for People with Disabilities,
VCU
IHHD online courses, reimbursable
Recommendation #6:
• Based on research evidence,
continually update and improve
curriculum and training resources
and materials for serving infants and
young children with hearing loss and
their families.
Catalog Information: Where
to Get More Good Stuff!
• SKI*HI Publications Through Hope, Inc.
– www.hopepubl.com
• Clerc Center at Gallaudet
– www.clerccenter.gallaudet.edu
• AGBell
– www.agbell.org
• Harris Communications
– www.harriscomm.com
• Boys Town Press
– www.boystownpress.org
Now, let’s have
some fun with the
materials!
Activity Stations Around the Room