1. Children with Hearing Loss in Hawai`i: Early and Late Identified (Session #8) 2006 Early Hearing Detection and Intervention Conference Washington, D.C. February 3, 2006 Beppie J. Shapiro, Ph.D. and Nicolette K. Battad, M.A. Center on Disability Studies, College of Education, University of Hawai`i beppie@hawaii.edu, nbattad@hawaii.edu

2. Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will (not) include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

3. Presentation Outline  Description of Study  Preliminary data  Discussion

4. Hawai`i Follow-Up Study of Children with Congenital Hearing Loss  Born 1992-1998  Permanent congenital hearing loss  Lived continuously in Hawai`i  Co-occurring disabilities do not preclude assessment Study Eligibility:

5. Recruitment: Goal to recruit 187 children!

6. Current Study Status  Recruitment ended Dec. 2005  48 eligible children enrolled  Information from 343 providers obtained  Majority of data entered in database

7. Child Demographics-Birth Yr  20 females, 28 males  Median age upon study entry 6.9 years (range 4.6-13.5)

8. Child Demographics- Ethnicity

9. Family Demographics-Mother’s Info  Median age of mother at birth of child 31 yrs. (range 16-44) Mother’s EducationMother’s Age at Birth

10. Family Demographics- Income  Range 35-361%  Hawaii’s 2004 FPL for Family Size of 4 = $21,680/yr

11. Parent Report: How Was Loss Identified?  Mean age of identification reported by parent was 21 months (range 0-120 mo) At Birth 15% At Older Age by Professional- 45% NHS 33%

12. Newborn Hearing Screening by Birth Year  Total of 29 children screened thru NBHS  88% children were referred from NBHS for further evaluation

13. Age at 1 st Identification  Median Age 1 st Identified = 12 months Age (months) by which child was identified (not cumulative) # of Children

14. Age at 1 st Intervention # of Children Age (months) by which service initiated (not cumulative)

15. Educational Data  50% of Children enrolled in Special Education (SPED)  4.6 years =Average age of enrollment

16. Communication  83% Communicate primarily in spoken English;  16% Mixed; 4% ASL

17. Amplification  58% use hearing aids; 3 (6%) cochlear implants  83% Communicate primarily in spoken English; (16% Mixed; 4% ASL)

18. Child Development  38% of parents reported child had other developmental delays (cognitive, fine motor, gross motor)

19. Reference List For more information on efficacy of NBHS protocols, see Johnson, Jean, White, Karl, Widen, Judith, Gravel, Judith et al, 2005. A Multicenter Evaluation of How Many Infants with Permanent Hearing Loss Pass a Two-Stage Otoacoustic Emissions/Automated Auditory Brainstem Response Newborn Hearing Screening Protocol. Pediatrics 116:3, 663-672 Additional information on EHDI in Hawai`i and other states may be found at: www.cdc.gov/ncbddd/ehdi/dips.htm

20. Discussion Beppie Shapirobeppie@hawaii.edu Nicolette Battadnbattad@hawaii.edu