Beyond%20Newborn%20Screening:%20Working%20with%20Children%20Who%20Are%20Deaf%20and%20Hard%20of%20Hearing%20and%20Their%20Families%20%20Early%20Intervention%20Conference%20Roanoke,%202006

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Beyond Newborn ScreeningWorking with Children
Who Are Deaf and Hard of Hearingand Their
Families Early Intervention ConferenceRoanoke,
2006

• Leslie Hutcheson Prince
• Virginia Department for the Deaf and Hard of
  Hearing
• Debbie Pfeiffer
• Virginia Department of Education

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Beyond Newborn Hearing ScreeningMeeting the
Educational and Health Care Needs of Infants and
Young Children with Hearing Loss in America
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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

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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

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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!

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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

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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
0
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 (NCHAM)
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Vocabulary Size for Hearing Impaired Children
Identified Before and After 6 Months of Age
300
250
200
Vocabulary Size
150
100
Identified BEFORE 6 Months
50
Identified AFTER 6 Months
0
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 (NCHAM)
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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.
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Identified lt6 mos (n 25)
5
Identified gt6 mos (n 104)
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3
Language Age (yrs)
2
1
0
0.8
1.2
1.8
2.2
2.8
3.2
3.8
4.2
4.8
Age (yrs)
Moeller, M.P. (1997).
Personal communication
, moeller_at_boystown.org
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And in Virginia, this research was a key
influence in the establishment of the Early
Hearing Detection and Intervention (EHDI)
program.
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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.

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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.

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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.

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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.

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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.
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Five Year Trends
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So, 77 of those infants referred for an
audiological assessment are getting one, and 70
are getting it before 3 months of age. THATS
GOOD. But, then what?
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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

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Certified and qualified service providers with
expertise in working with infants and young
children who are deaf or hard of hearing.
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What are the components of a quality early
intervention program for families of children who
are deaf or hard of hearing?
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Recommendation 1

• Family involvement has a significant impact on a
  childs progress and therefore, a family-centered
  approach should be used for infants and young
  children with hearing loss.

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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

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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

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Families with Deaf Children Discovering Your
Needs Exploring Your Choicesand Families
with Hard of Hearing Children What If Your
Child Has A Hearing Loss?

• Published by Boys Town Press, 1997

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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)

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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)

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Some Resources!

• Choices in Deafness A Parents Guide to
  Communication Options by Sue Schwarz (book)
• SKI HI Curriculum
• Beginnings Communication Choices (videotape)

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• 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)

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Recommendation 3

• Provide proactive, comprehensive and ongoing
  audiologic management, both for the hearing loss
  and the applied technology.

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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

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Virginia Hearing Aid Loan Bank

• Parent submits loan application in conjunction
  with audiologist
• Loan period of six months, with additional
  six-month 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.

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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
• LKP2V_at_hscmail.mcc.virginia.edu

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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

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Other Technologies Are Important as Well

• TTYs, telephone ring signalers, bed-shakers
  (alarm clocks), visual smoke detectors.
• Some devices available through VDDHH Technology
  Assistance Program (TAP).
• Others available for demo through VDDHH TAPLOAN
  sites.

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• Recommendation 4
• Develop guidelines for increasing or decreasing
  placement in mainstream education settings based
  on the childs communication and academic
  development.

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• 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.

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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

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Training Opportunity

• Ann Hughes,
• Partnership for People with Disabilities, VCU
• IHHD online courses, reimbursable

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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.

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Catalog Information Where to Get More Good Stuff!

• SKIHI 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

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Now, lets have some fun with the materials!

• Activity Stations Around the Room