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

1. Deaf But Not Delayed: Who, What, When and Why? Shining Stars 2010 Ann Hughes, M.A. awhughes@vcu.edu Debbie Pfeiffer, Ed.D., CED debbie.pfeiffer@doe.virginia.gov

2. Early Hearing Detection and 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!

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

4. 2009 Virginia Early Hearing Detection and Intervention (VA EHDI) • 1-3-6 goal • 96.6% 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).

5. Risk Factors for Late Onset or Progressive Hearing Loss • Family/Caregiver concerns • Family history of permanent childhood hearing loss • NICU for > 5 days or ECMO, assisted ventilation, exposure to ototoxic meds, or loop diuretics, and hyperbilirubinemia that requires exchange transfusion

6. Risk Factors for Late Onset or Progressive Hearing Loss (cont’d.) • In-utero infection (“TORCH” – toxoplasmosis, other agents, rubella, CMV, herpes) • Craniofacial anomalies • Characteristics associated with syndrome • Syndromes assoc with hearing loss or progressive or late-onset hearing loss

7. Risk Factors for Late Onset or Progressive Hearing Loss (cont’d.) • Neurodegenerative disorders or sensory motor neuropathies • Culture positive postnatal infections assoc. w sensorineural hearing loss • Head trauma • Chemotherapy • Recurrent or persistent otitis media with effusion (lasting 3 months or longer)

8. Joint Committee on Infant Hearing (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.

9. JCIH’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.

10. What. . . type of EI services should be provided to families of infants and toddlers who are deaf or hard of hearing?

11. JCIH Recommendations (2007)EarlyIntervention • All families of infants withany degree ofbilateral orunilateralpermanent hearing lossshould be considered eligible forearlyinterventionservices • There should berecognized central referral points of entrythat ensure specialtyservicesfor infants with confirmed hearingloss.

12. JCIH Recommendations (2007)EarlyIntervention • Early interventionservices for infants with confirmedhearingloss should be providedby professionals who have expertisein hearing loss, includingeducators of the deaf, speech-languagepathologists, 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

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

14. Research says… • When effectiveintervention 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

15. Who. . . should provide EI services to families of infants and toddlers who are deaf or hard of hearing? The key component of providing quality servicesis the expertise of the provider specific to hearing loss. JCIH, 2007

16. JCIH Recommendation • Appropriate 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.

17. Roles of Specialists in EI Services-- JCIH Recommendations, 2007 • Speech-language pathologists provide bothevaluation and intervention services for language, speech, andcognitive-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.

18. Roles of Specialists in EI Services-- JCIH Recommendations, 2007 • The 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.

19. Roles of Specialists in EI Services -- JCIH Recommendations, 2007 • The 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 hearingworld; • raising infants or children who are deaf or hard of hearing; and • providing families with a full range of information aboutcommunication options, assistive technology, and resources thatare available in the community.

20. Why. . . is it important for the Early Intervention provider to be knowledgeable about hearing loss?

21. The EI Provider needs to be able to: • Educate families re: communication options • Foster parent/child interaction conducive to communication/language development • Conduct approp. assessments for D/HH • Share info re: technology • Monitor for progressive or late onset hearing loss • Understand the impact of hearing loss on academics and long range goals

22. Communication Options • American Sign Language (ASL) with English as a second language • Auditory-Oral (Listening and Spoken Language) • Auditory-Verbal • Cued Speech • Total Communication

23. Regular Developmental Assessment • What do you use?

24. Supplemental Assessment Toolsspecifically for children with hearing loss: • CASSLS • IT-MAIS • Kendall Communication Proficiency Assessment • MacArthur Communicative Development Inventory: Words and Gestures (8-16 mo) words and sentences (16-30 mo) • SKI HI Language Assessment

25. Technology • Hearing aids • Cochlear implants, • Fm systems • Bone anchored hearing aids (BAHA)

26. Devices

27. Who. . . do you think might be involved in providing EI services in the following cases ?

28. Who are the 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.

29. Who are the Service Providers? Child with Downs Syndrome and a moderate hearing loss • Child uses good hearing aids • Family wants their child to be included in a general ed setting

30. Who are the Service Providers? • Child has meningitis at 7 months resulting in a severe-profound hearing loss • Parents are considering a cochlear implant.

31. Who are the Service Providers? • Child who has been diagnosed with a profound hearing loss • Parents are both hearing and have never met a Deaf person.

32. Where. . . are the resources for providing effective services ?

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

34. Add this resource to your handout!http://www.cdc.gov/ncbddd/ehdi/edmaterials.htm • Decision 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).

35. How might you use bin resources with each of these 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

36. Resources: Teachers of the Deaf/Hard of Hearing • TODHH are being encouraged to complete the EI modules • Connect with local agencies • Available for consultation

37. Transition to Part B • Part C SPP Indicators • Improved positive social-emotional skills • Acquisition and use of knowledge and skills • Use of appropriate behaviors • VA Communication Plan

38. Goal: Providing Effective Early InterventionWho, What,When,and Why?