Deaf But Not Delayed: Deaf But Not Delayed: Who, What, When and Who, What, When and Why?Why?

Shining Stars 2010Ann Hughes, M.A.awhughes@vcu.eduDebbie Pfeiffer, Ed.D., CEDdebbie.pfeiffer@doe.virginia.gov

Early Hearing Detection and Early Hearing Detection and Intervention (EHDI)Intervention (EHDI)Unidentified hearing loss can

adversely affect:◦Speech development◦Language development◦Academic achievement◦Social-emotional development

Historically, hearing loss was detected between 24-36 months of age◦Milder hearing loss and unilateral hearing

loss was not detected often until school age!

When.. When..

is it important to begin working with an infant who is deaf or hard of hearing?

2009 Virginia Early Hearing 2009 Virginia Early Hearing Detection and Intervention (VA Detection and Intervention (VA EHDI)EHDI)1-3-6 goal96.6% of all newborns in VA were

screened before three months of age in 2008.

3,098 infants failed an initial hearing screening; 1,277 received follow-up and 117 (5.3%) referred infants were confirmed as having a hearing loss.

27/117 children with hearing loss (23%) were enrolled in Part C services by 6 months of age (incomplete information based on informal assessments at EHDI).

Risk Factors for Late Onset Risk Factors for Late Onset or Progressive Hearing Lossor Progressive Hearing LossFamily/Caregiver concernsFamily history of permanent

childhood hearing lossNICU for > 5 days or ECMO,

assisted ventilation, exposure to ototoxic meds, or loop diuretics, and hyperbilirubinemia that requires exchange transfusion

Risk Factors for Late Onset Risk Factors for Late Onset or Progressive Hearing Loss or Progressive Hearing Loss (cont’d.)(cont’d.)In-utero infection (“TORCH” –

toxoplasmosis, other agents, rubella, CMV, herpes)

Craniofacial anomalies Characteristics associated with

syndromeSyndromes assoc with hearing loss

or progressive or late-onset hearing loss

Risk Factors for Late Onset Risk Factors for Late Onset or Progressive Hearing Loss or Progressive Hearing Loss (cont’d.)(cont’d.)Neurodegenerative disorders or

sensory motor neuropathiesCulture positive postnatal infections

assoc. w sensorineural hearing lossHead traumaChemotherapyRecurrent or persistent otitis media

with effusion (lasting 3 months or longer)

Joint Committee on Infant Joint Committee on Infant Hearing Hearing (JCIH) (JCIH)

JCIH is comprised of representatives from:◦ American Academy of Pediatrics◦American Academy of Otolaryngology and

Head and Neck Surgery◦ American Speech Language Hearing

Association◦American Academy of Audiology◦Council on Education of the Deaf, and◦ Directors of Speech and Hearing Programs

in State Health and Welfare Agencies.

JCIH’s Primary ActivityJCIH’s Primary Activity• Publication of position statements

summarizing the state of the science and art in infant hearing, and • Recommending the preferred

practice in early identification and appropriate intervention of newborns and infants at risk for or with hearing loss.

What. . .What. . .

type of EI services should be provided to families of infants and toddlers who are

deaf or hard of hearing?

JCIH Recommendations JCIH Recommendations (2007)(2007)

EarlyEarly  InterventionInterventionAll families of infants with any degree

of bilateral or unilateral permanent hearing loss should be considered 

eligible for early intervention services

There should be recognized central referral points of entry that ensure specialty services for infants with confirmed hearing loss. 

JCIH Recommendations JCIH Recommendations (2007)(2007)

EarlyEarly  InterventionInterventionEarly intervention services for infants

with confirmed hearing loss should be provided by professionals who have expertise in hearing loss, including educators of the deaf, speech-language pathologists, and audiologists. 

In response to a previous emphasis on “natural environments,” the JCIH recommends that both home-based and center-based intervention options be offered

Why. . .Why. . .

is effective early intervention critical for families of infants and young children who are d/hh?

Research says…Research says…When effective intervention

occurs no later than 6 months of age, infants perform as much as 20 – 40 percentile points higher on school-related measures ◦Vocabulary◦Articulation◦Intelligibility◦Social adjustment◦Behavior

Who. . .Who. . . should provide EI services

to families of infants and toddlers who are

deaf or hard of hearing?

The key component of providing quality services is the expertise of the provider specific to hearing loss.

JCIH, 2007

JCIH RecommendationJCIH RecommendationAppropriate interdisciplinary

intervention programs for infants with hearing loss and their families should be provided by professionals who are knowledgeable about childhood hearing loss. Intervention programs should recognize and build on strengths, informed choices, traditions and cultural beliefs of the families.

Roles of Specialists in EI Roles of Specialists in EI ServicesServices

-- JCIH Recommendations, 2007-- JCIH Recommendations, 2007Speech-language pathologists provide both evaluation and intervention services for language, speech, and cognitive-communication development.

Educators of children who are d/hh integrate the development of communicative competence within a variety of social, linguistic and cognitive/academic contexts.

Audiologists may provide diagnostic and habilitative services within the IFSP or school-based IEP.

Roles of Specialists in EI Roles of Specialists in EI ServicesServices

-- JCIH Recommendations, 2007-- JCIH Recommendations, 2007The care coordinator:◦Facilitates the family’s transition from

screening to evaluation to early intervention;

◦Incorporates the family’s preferences for outcomes into an IFSP as required by federal legislation;

◦Supports the family members in their choice of infant’s communicative development; and

◦Assists the family in advocating for the infant’s unique developmental needs.

Roles of Specialists in EI Roles of Specialists in EI ServicesServices

-- JCIH Recommendations, 2007 -- JCIH Recommendations, 2007The deaf and hard-of-hearing community, including adult and child members, can serve as mentors and role models, sharing their experiences in:◦ negotiating their way in a hearing  world;◦ raising infants or children who are deaf or

hard of hearing; and◦ providing families with a full range of

information about communication options, assistive technology, and resources that are available in the community.

Why. . .Why. . .

is it important for the Early Intervention provider to be knowledgeable about

hearing loss?

The EI Provider needs to be The EI Provider needs to be able to: able to: Educate families re: communication

optionsFoster parent/child interaction conducive

to communication/language development

Conduct approp. assessments for D/HHShare info re: technologyMonitor for progressive or late onset

hearing lossUnderstand the impact of hearing loss

on academics and long range goals

Communication OptionsCommunication OptionsAmerican Sign Language (ASL) with English as a second language

Auditory-Oral (Listening and Spoken Language)

Auditory-VerbalCued SpeechTotal Communication

Regular Developmental Regular Developmental AssessmentAssessmentWhat do you use?

Supplemental Assessment Supplemental Assessment ToolsToolsspecifically for children with specifically for children with hearing loss:hearing loss:CASSLS

IT-MAISKendall Communication Proficiency

AssessmentMacArthur Communicative

Development Inventory: Words and Gestures (8-16 mo) words and sentences (16-30 mo)

SKI HI Language Assessment

TechnologyTechnology

Hearing aidsCochlear implants,Fm systemsBone anchored hearing aids

(BAHA)

DevicesDevices

Who. . .Who. . .

do you think might be involved in providing

EI services in the following cases ?

Who are the Who are the Service Providers?Service Providers?

Child with a moderate-severe hearing loss

Family has just come from Mexico.

Parents want their child to learn both English and Spanish.

Who are the Who are the Service Providers?Service Providers?

Child with Downs Syndrome and a moderate hearing loss

Child uses good hearing aidsFamily wants their child to be included in a general ed setting

Who are the Who are the Service Providers?Service Providers?

Child has meningitis at 7 months resulting in a severe-profound hearing loss

Parents are considering a cochlear implant.

Who are the Who are the Service Providers?Service Providers?

Child who has been diagnosed with a profound hearing loss

Parents are both hearing and have never met a Deaf person.

Where. . .Where. . .

are the resources for providing effective services ?

Resources for providing Resources for providing opportunities for interaction opportunities for interaction with other parents and with other parents and education regarding education regarding communication options..communication options..Virginia Guide By Your Side (GBYS)Virginia Hands & Voices (H & V)

Add this resource to your Add this resource to your handout!handout!http://www.cdc.gov/ncbddd/ehdi/edmaterials.htmDecision Guide to Communication Choices (Brochure)

Questions You May Want to Ask Your Child’s Genetics Team

Questions You May Want to Ask Your Child’s Medical Professional  )

“Guía para Familias de Niños con Pérdida Auditiva,” (Guide for Families of Children with Hearing Loss).

How might you use bin How might you use bin resources with each of these resources with each of these families?families?1.) Child with moderate-severe hearing

loss; family does not want to draw attention to the child’s disability; wants child to learn both English and Spanish . . .

2.) Child with Downs Syndrome with a moderate hearing loss; family wants child included in gen ed with good hearing aids…

3.) Child with severe-profound hearing loss from meningitis; parents are considering a cochlear implant (but aren’t sure yet)…

4.) Child with a profound hearing loss; parents are both hearing – never met a deaf person

Resources: Teachers of Resources: Teachers of the Deaf/Hard of Hearing the Deaf/Hard of Hearing

TODHH are being encouraged to complete the EI modules◦Connect with local agencies◦Available for consultation

Transition to Part BTransition to Part BPart C SPP Indicators

◦Improved positive social-emotional skills

◦Acquisition and use of knowledge and skills

◦Use of appropriate behaviorsVA Communication Plan

Goal: Goal: ProvidingProviding Effective Effective Early Early InterventionIntervention

Who, Who, What,What,When,When,and Why?and Why?