Beyond Newborn Screening:Working 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

“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…

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(NCHAM)

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(NCHAM)

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, moeller@boystown.org

129 deaf and hard-of-hearing children assessed 2x each year.

Assessments done by trained diagnostician as normal part of early intervention program.

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.

Data2004

80.3 % of infants who failed screening received follow up1.9% of newborns were reported with one or more risk indicators84 infants with hearing lossMedian age at diagnosis, 3.9 mo.

2005 (PRELIMINARY)78% of infants who failed screening received follow up1.9% of newborns were reported with one or more risk indicators76 infants with hearing lossMedian age at diagnosis, 4.0 mo.

Five Year Trends

0.0

20.0

40.0

60.0

80.0

100.0

Per

cen

tag

e

1999 2000 2001 2002 2003 2004

Year of Birth

Percentage of Referred Infants Receiving Diagnostic Audiologic Evaluation

1999 - 2003

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 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.

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, 1-800-251-3627LKP2V@hscmail.mcc.virginia.edu

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, bed-

shakers (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