Updates, Uplinks and Updates, Uplinks and Downloads to Early Downloads to Early

Intervention for Intervention for Infants/Toddlers with Hearing Infants/Toddlers with Hearing

LossLoss

Updates, Uplinks and Updates, Uplinks and Downloads to Early Downloads to Early

Intervention for Intervention for Infants/Toddlers with Hearing Infants/Toddlers with Hearing

LossLossSarah Peters, Ph.DSarah Peters, Ph.DEllen Rolader, M.A.Ellen Rolader, M.A.

Melinda Smyth, M.A.Melinda Smyth, M.A.

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Training OutcomesTraining OutcomesParticipants will:Participants will:

• Identify resources related to Early Intervention with Infants Identify resources related to Early Intervention with Infants and Toddlers identified with Hearing lossand Toddlers identified with Hearing loss

• Discuss Virginia State protocols for Early Intervention Discuss Virginia State protocols for Early Intervention practices when serving Deaf and Hard of Hearing Infants and practices when serving Deaf and Hard of Hearing Infants and Toddlers and their familiesToddlers and their families

• Discuss future needs of Early Intervention and families of Deaf Discuss future needs of Early Intervention and families of Deaf and Hard of Hearing Infant/Toddlers for state of the art and Hard of Hearing Infant/Toddlers for state of the art practices. practices.

• Have hands on experience with materials.Have hands on experience with materials.

Incidence of Pediatric Hearing Loss

• About 12,000 babies are born each year with permanent hearing loss

• About 20% of children born have a profound hearing loss

NCHAM, 2001

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Incidence per 10,000Incidence per 10,000(NCHAM)(NCHAM)

30

12 11

6 52 1

0

10

20

30

40

BOTTOM LINE…Hearing loss in babies

and young children

is not uncommon!

Medical & Professional Awareness

• Surprisingly low

• Many unaware of:– Advances in technology

– Testing methods– Communication options

In the Past• Before Universal Newborn Hearing

Screening (UNHS) began in hospitals at birth, the average child was diagnosed with hearing loss at: – 2 ½ years for babies with severe to

profound loss– 4 to 5 years for those with mild to moderate

loss

Today

• Hearing can be screened on the day of birth

• Babies are diagnosed early and are receiving early intervention

services by age 3.9 months

unidentified hearing loss at birth can adversely affect

speech and language development as well

as academic achievement and social-emotional development

It has long been recognized that:

Universal Newborn Universal Newborn Hearing Screening (Hearing Screening (UNHSUNHS))

• By July 2000, Virginia’s law By July 2000, Virginia’s law required all newborns born required all newborns born in a hospital to in a hospital to be screenedbe screened

The Good News: By 2005, all states had The Good News: By 2005, all states had a newborn hearing screening program a newborn hearing screening program

in placein place

The Sad News: Almost 60% of newborns The Sad News: Almost 60% of newborns who did not pass screening, failed to who did not pass screening, failed to

have appropriate follow-up in audiology have appropriate follow-up in audiology and early intervention programsand early intervention programs

Nationwide Universal Newborn Hearing Screening

Virginia’s UNHS 2006

• Number of Live Births: 108,716 • 99% Screened Before 1 Month • 2.9% Did not pass• 83.5% Received follow-up• 1.7% Passed screening, but at-risk for

progressive or delayed-onset hearing loss• 111 children born in 2006 have been

identified with hearing loss

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2008 What we have 2008 What we have learnedlearned

• Children still slip through the cracksChildren still slip through the cracks• Physicians in the NICU not always Physicians in the NICU not always

reporting to the primary pediatricianreporting to the primary pediatrician• Families lost to follow-upFamilies lost to follow-up• Lack of standardization in re-testingLack of standardization in re-testing• Delays in fitting amplification systemsDelays in fitting amplification systems• Appropriate Early Intervention not always Appropriate Early Intervention not always

offered to familiesoffered to families

Early Identification is Important !

• Enables early intervention to take place

• Takes advantage of the critical window for growth in all areas of development • Gives parents more time to make

decisions

Oh No, Not Another CommitteeOh No, Not Another Committee

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• Joint Committee on Joint Committee on Infant Hearing (JCIH) Infant Hearing (JCIH) 2007 Statement2007 Statement

• Major influence on Major influence on the reauthorization of the reauthorization of Early Detection of Early Detection of Hearing Impaired Hearing Impaired Infants in Congress Infants in Congress nownow

Expanded Definition Expanded Definition of Targeted Hearing of Targeted Hearing lossloss

Separate protocols Separate protocols for NICU and well for NICU and well baby nurseriesbaby nurseries

Genetics Genetics consultation is consultation is recommended for recommended for confirmed hearing confirmed hearing loss.loss.

Interventionist are Interventionist are specialists not specialists not generalistsgeneralists

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Recommendations

Reauthorization of the Early Hearing Reauthorization of the Early Hearing Detection and Intervention Act of 2008Detection and Intervention Act of 2008

Improves Services for Newborns and Infants with Hearing LossImproves Services for Newborns and Infants with Hearing Loss

• Highlights Central Point of EntryHighlights Central Point of Entry• Early ScreeningEarly Screening• DiagnosisDiagnosis• Follow-up careFollow-up care• Early interventionEarly intervention• Family support servicesFamily support services

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Commonwealth of Virginia’s

EDHI Agency• VEDHI info• Part of VA’s Department of Health

(VDH) • www.infanthearing.org/states/virginia/in

dex.html• Gayle Jones, MPH, CHES • Goal of audio eval by one month and

EI by 6 months

Virginia’s Early Hearing, Detection & Intervention

Agency

Mission: to minimize or eliminate communication disorders resulting from a hearing loss

Goal: to identify hearing loss in children before 3 months of age and provide appropriate EI services before 6 months

www.vahealth.org/hearing/

Clueless? Who to contact

Virginia Network of Consultants (VNOC)

Professionals with expertise in working children who are deaf or hard of hearing are available to provide

consultation/training in school divisions and state operated programs in Virginia to promote and enhance

the educational services for the children

Contact:Ann Hughes

804-828-1342awhughes@vcu.edu

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What Services are What Services are availableavailable

• Universal Newborn Hearing Screening prior to one Universal Newborn Hearing Screening prior to one month of agemonth of age

• Follow up by the Virginia Department of Follow up by the Virginia Department of Health(VEDHI)Health(VEDHI)

• Early Intervention Part C ServicesEarly Intervention Part C Services

• Family supportFamily support

Success Story

“Our daughter, Jane, was born 6 weeks premature. She was in the NICU for 1 month. While in the NICU, her hearing was tested and she failed. We were advised to follow up with audiological testing within one month after she came home. The results of the next evaluation indicated a mild to moderate hearing loss in both ears. She did not have a profound loss and we were relieved.

Our pediatrician referred us to our local early intervention program. We have been with this program now for 2 years and are grateful for the services they have provided for Jane and for us, as well.

Jane, now 26 months, is such a pleasure in our lives and is learning to talk “up a storm”. We are blessed to have had EI professionals work with us to show us what to do with Jane since she was diagnosed at birth.”

After Identification: Now What?

• Be sure to report to VEDHI • Find audiological contact

within medical home• Refer for parent support • Provide appropriate EI services

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PartnershipsPartnerships

• Deaf adultsDeaf adults

• Families of children Families of children who are deaf/hard of who are deaf/hard of hearing (GBYS)hearing (GBYS)

• People representing People representing different different communication communication options (H&V)options (H&V)