1. Longitudinal Study of NC EHDI Program A joint study by the Office of Education Services of the NC Dept. of Health and Human Services And BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc. Presented by Joni Alberg, Ph.D. and Christene Tashjian, MPA BEGINNINGS--Raleigh, NC

2. Faculty Disclosure Information In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s), the product(s) or provider(s) of the service(s) that will be discussed in our presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA, nor will we discuss any unapproved or off – label uses of pharmaceuticals or devices.

3. Study Design Team Joni Alberg, Ph.D.--Executive DirectorBEGINNINGS Cyndie Bennett, MASuperintendentOffice of Education Services, NC Dept. of Health & Human Services Jack Roush, Ph.D., CCC/A, Chair--Director--Division of Speech and Hearing Sciences, UNC-CH School of Medicine Member, Joint Committee on Infant Hearing Christene Tashjian, MPAAssistant Executive Director of Research & Development, BEGINNINGS Kathryn Wilson, MA, CCC-SLP, Cert-AVTDirectorResource Support Program, Office of Education Services, NC Dept. of Health & Human Services

4. Goals of the NC EHDI Program All infants are screened for hearing loss prior to discharge from birthing/neonatal facilities, or within one month of birth.

5. All infants referred from the screening process complete diagnostic audiological evaluation by three months of age. All infants with diagnosed hearing loss receive appropriate interventions by six months of age, including amplification selection (if appropriate) and early intervention.

6. Early Intervention Program for Children Who Are Deaf or Hard of Hearing Provide comprehensive, developmental and educational services to children who are deaf, hard of hearing, or deaf/blind, ages birth to 3, and their families with a concentration on language and communication skill development.

7. Purpose of the Study Examine efforts to achieve 1-3-6 goals for newborn hearing screening/diagnosis/intervention. Examine language outcomes of children transitioning from EI to Preschool. Follow the language development progress of children who have exited EI.

8. Questions We Set Out to Answer 1.Are we meeting our goals for newborn screening and diagnosis? 2.Are we achieving desired goals for language and communication development in children enrolled in EI? 3.Do children continue to make gains in preschool so that they are on par with hearing peers when they enter Kindergarten?

9. Study Design Longitudinal Statewide in scope Representative Pilot Phase

10. Study Subjects BEGINNINGS database Received EI services Born since newborn screening implemented Turning three years old during Pilot Phase Parents agree to participate

11. As of 12/31/03 CHEROKEE MACON GRAHAM HAY- WOOD RUTHER- FORD BUN- COMBE YAN- CEY MADISON MITCHELL CLEVELAND LINCOLN CATAWBA BURKE MECKLEN- BURG UNION CABARRUS ROWAN IREDELL STANLY DAVID- SON MONT- GOMERY RANDOLPH MOORE ANSON RICH- MOND HOKE CHATHAM HARNETT CUMBER- LAND ROBESON BLADEN SAMPSON COLUMBUS BRUNSWICK NEW HANOVER PENDER ORANGE DURHAM PERSON GRANVILLE VANCE FRANKLIN WAKE NASH JOHNSTON WAYNE DUPLIN GREENE LENOIR PITT JONES ONSLOW CARTERET CRAVEN HYDE WASH- INGTON BERTIE MARTIN CURRITUCK NORTH- AMPTON HALIFAX EDGE- COMBE ROCKING- HAM STOKES SURRY FORSYTH GUILFORD DAVIE ASHE WATAUGA ALLE- GHANY CALDWELL ALEX- ANDER McDOWELL WILSON AVERY CASWELL WARREN YADKIN TYRELL DARE SWAIN JACKSON POLK SCOT- LAND PAMLICO BEAUFORT CAMDEN GATES HERT- FORD COUNTIES 1 PASQUOTANK 2 PERQUIMANS 1 CHOWAN 2 CLAY TRAN- SYLVANIA HENDER- SON ALAMANCE GASTON LEE WILKES BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc. Location of Longitudinal Study Children As of December 2005 As of 12/31/05

12. Methodology Design Team developed data collection forms BEGINNINGS created parent release forms, FAQs, abstract; translated into Spanish BEGINNINGS staff, EI staff, CHAC were trained to use the forms

13. Data Collection BEGINNINGS staff confirm current parental info with EI staff, get family update (if needed) BEGINNINGS staff call parents, send materials; 3 attempts made Parents sign ROI, PPF EI staff complete their portion of DCF CHACs provide screening/hearing info Children assigned unique ID number, no names

14. Data Elements Family/ChildHearingEI Hearing status of parents & siblings NBS/re-screen tool(s), results Dates service began/ended Primary language in home Etiology of lossLocation/frequency of serv.; length of session Parent(s) job, highest education level Initial & transition hearing thresholds Description of services Other challenges – childInitial & transition HL type Level of parental participation in sessions Avg. # hr/day child uses HI (or signs) at home Age at 1 st HA fittingOther therapies child receives Communication choice(s) HA type/CI/FMPrivate SL/AVT

15. EI File Review EI transition language assessment scores Rosetti, DOCs, PLS-4 Subset of 30-40 children to be given PLS-4 by EI SLPs

16. PLS - 4 To be administered to all subjects at ages 4, 5, 6 Test results compared with previous year(s) to assess progress Share results with parents & preschool

17. Gender 27 female 18 male Other Challenges 20 None 3 Unknown 8 One Challenge 3 Two Challenges 10 Three or More Challenges Preliminary Findings 45 subjects Located in 29/100 counties

18. Hearing Status of Parents 42 Hearing 3 Deaf or Hard of Hearing Language in Home 39 English 5 Spanish 1 ASL

19. Siblings 7 None 6Yes, with hearing loss 31 Yes, with no hearing loss (1 Incomplete data)

20. Other Therapies 23None 22One or more 9One only 5Two therapies 4Three therapies 2Four therapies 1 Six therapies 1 Seven therapies

21. Screening ToolsLocationResults AABR 18NICU 11Refer-both 21 OAE 4WBN 17Pass-both 3 2 – Step 4Other/Unknown 3Refer-one 5 Unknown 5Direct Refer 2

22. Rescreen ToolsLocationResults AABR 7Hospital 12Refer 19 OAE 3Priv. Aud. 3Pass 2 2 – Step 3Health Dept. 1Direct Refer 1 Unknown 2Other 6

23. Diagnostic Tools ABR23 OAE15 Tympanogram10 VRA 7 ASSR 2 Acoustic Reflex 1 Play Audiometry 2 Unknown 2

24. Type of Hearing Loss At Diagnosis Bilateral27 Unilateral 3 Unknown 3 Right Ear Sensorineural20 Conductive 3 AN/AD 4 None 1 Unknown 5 Left Ear Sensorineural21 Conductive 3 AN/AD 4 None 0 Unknown 5

25. Type of Hearing Loss At Transition Bilateral23 Unilateral 2 Unknown 8 Right Ear Sensorineural16 Conductive 4 Mixed 1 AN/AD 3 Unknown 9 Left Ear Sensorineural17 Conductive 3 Mixed 1 AN/AD 3 Unknown 9

26. Age at Diagnosis N = 32 Range:.5 to 31 months Median Age: 3 months Mean Age: 7.4 months 17 children diagnosed by 3 months (53%)

27. Age at EI Initiation (N=45) Range: 2 to 34 months Median: 11 months Mean: 12.6 months 14 children (31%) were enrolled in EI by 6 months

28. Hearing Instruments N = 42 Hearing Aid Recommended?39 yes 3 No Age at HA Fitting: Range: 1 to 35 months Median: 12 months Mean: 14 months

29. Type of Hearing Instrument Air Conduction HA37 Bone Conduction HA 1 Bone/Air HA 1 None 3 Average Daily Home Use of Hearing Instrument (36 children): Range: 0 to 16 hours Median: 10 hours Mean: 9 hours Average Daily Use of Sign in Home (4 children) : Range: 1 to 24 hours Median: 7.5 hours Mean: 10 hours Personal FM System12 Cochlear Implant11

30. Communication Choice 1 st Choice2 nd Choice Auditory Oral 26 3 Auditory Verbal 10 3 Cued Speech 0 1 Total Communication 6 2 ASL 2 1 Other Sign 1 1

31. Language Assessments at Transition DOCS: Overall (n=16) DOCS: Language (n=17) DOCS: Cognition (n=17) SS: Range 64 – 103 Mean 88 SS: Range 5 – 107 Mean 81 SS: Range 6 – 103 Mean 80 PLS 4: Total Language (n = 9) SS: Range 63 – 92 Mean 79

32. What We Have Learned So Far… The Pilot Phase of the Study has been critical. Not all EI screening and diagnostic data are in one place, requiring time-consuming follow-up. 53% of our babies have been diagnosed by 3 months of age! Collaboration among agencies responsible for screening, diagnosis, intervention and transition is essential to collecting complete data.

33. Challenges Conducting a study of this scope with no additional funding. The number of people involved in data collection. Management of large amounts of data. Conducting research with non-researchers. Scope Creep – the scope of work keeps expanding. Numerous sources from which data must be collected.

34. Next Steps… Continue Pilot Study until we have 100 children. Seek additional funding. Begin testing 4 year olds using the PLS-4.

35. Thank you!!