Updates, Uplinks and Downloads to Early Intervention for Infants/Toddlers with Hearing Loss

1. Updates, Uplinks and Downloads to Early Intervention for Infants/Toddlers with Hearing Loss Sarah Peters, Ph.D Ellen Rolader, M.A. Melinda Smyth, M.A.

2. Training OutcomesParticipants will: Identify resources related to Early Intervention with Infants and Toddlers identified with Hearing loss Discuss Virginia State protocols for Early Intervention practices when serving Deaf and Hard of Hearing Infants and Toddlers and their families Discuss future needs of Early Intervention and families of Deaf and Hard of Hearing Infant/Toddlers for state of the art practices. Have hands on experience with materials. 2

3. 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

4. Incidence per 10,000(NCHAM) 4

5. BOTTOM LINE… Hearing loss in babies and young children is not uncommon!

6. Medical & Professional Awareness • Surprisingly low • Many unaware of: • Advances in technology • Testing methods • Communication options

7. 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

8. 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

9. It has long been recognized that: unidentified hearing loss at birth can adversely affect speech and language development as well as academic achievement and social- emotional development

10. Universal Newborn Hearing Screening (UNHS) By July 2000, Virginia’s law required all newborns born in a hospital to be screened

11. The Good News: By 2005, all states had a newborn hearing screening program in place The Sad News: Almost 60% of newborns who did not pass screening, failed to have appropriate follow-up in audiology and early intervention programs Nationwide Universal Newborn Hearing Screening

12. 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

13. 2008 What we have learned Children still slip through the cracks Physicians in the NICU not always reporting to the primary pediatrician Families lost to follow-up Lack of standardization in re-testing Delays in fitting amplification systems Appropriate Early Intervention not always offered to families 13

14. 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

15. Oh No, Not Another Committee 15

16. Expanded Definition of Targeted Hearing loss Separate protocols for NICU and well baby nurseries Genetics consultation is recommended for confirmed hearing loss. Interventionist are specialists not generalists Recommendations Joint Committee on Infant Hearing (JCIH) 2007 Statement Major influence on the reauthorization of Early Detection of Hearing Impaired Infants in Congress now 16

17. Reauthorization of the Early Hearing Detection and Intervention Act of 2008Improves Services for Newborns and Infants with Hearing Loss Highlights Central Point of Entry Early Screening Diagnosis Follow-up care Early intervention Family support services 17

18. Commonwealth of Virginia’s EDHI Agency • VEDHI info • Part of VA’s Department of Health (VDH) • www.infanthearing.org/states/virginia/index.html • Gayle Jones, MPH, CHES • Goal of audio eval by one month and EI by 6 months

19. 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/

20. 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 804-828-1342 awhughes@vcu.edu

21. What Services are available Universal Newborn Hearing Screening prior to one month of age Follow up by the Virginia Department of Health(VEDHI) Early Intervention Part C Services Family support 21

22. 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.

23. 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.”

24. After Identification: Now What? • Be sure to report to VEDHI • Find audiological contact within medical home • Refer for parent support • Provide appropriate EI services

25. Partnerships Deaf adults Families of children who are deaf/hard of hearing (GBYS) People representing different communication options (H&V) 25