Longitudinal Study of NC EHDI Program

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. Kathryn Wilson, MA, CCC-SLP, Cert-AVT Christene Tashjian, MPA

2. Study Design Team Joni Alberg, Ph.D.--Executive Director—BEGINNINGS Cyndie Bennett, MA—Superintendent—Office of Education Services, NC Dept. of Health & Human Services Jack Roush, Ph.D., CCC/A --Director--Division of Speech and Hearing Sciences, UNC-CH School of MedicineFormer Member, Joint Committee on Infant Hearing Christene Tashjian, MPA—Assistant Executive Director of Research & Development, BEGINNINGS Kathryn Wilson, MA, CCC-SLP, Cert-AVT—Director—Resource Support Program, Office of Education Services, NC Dept. of Health & Human Services

3. Faculty Disclosure In the past 12 months, we 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 our presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.

4. The goals of the NC EHDI program reflect the recommendations set forth by the Joint Committee on Infant Hearing’s “Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs”

5. 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.

6. 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.

7. 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.

8. 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 after EI.

9. Study Design • Longitudinal • Statewide in scope • Representative • Pilot Phase

10. Study Subjects • BEGINNINGS’ database • Received EI services • Born since newborn screening implemented • Three years old when entered study • Parents agreed to participate

11. BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc. Location of Longitudinal Study Children As of December 2006 Children Located in 43 of 100 Counties COUNTIES 1 PASQUOTANK 2 PERQUIMANS ALLE- GHANY NORTH-AMPTON CAMDEN GATES ASHE CURRITUCK ROCKING- HAM SURRY WARREN HERT- FORD STOKES CASWELL VANCE PERSON 1 HALIFAX GRANVILLE 2 CHOWAN WATAUGA WILKES YADKIN BERTIE FORSYTH FRANKLIN GUILFORD AVERY DURHAM ORANGE MITCHELL YAN- CEY ALAMANCE CALDWELL EDGE- COMBE ALEX- ANDER NASH DAVIE WASH- INGTON MADISON DARE DAVID- SON MARTIN IREDELL TYRELL WAKE BURKE RANDOLPH WILSON CHATHAM HAY- WOOD BUN- COMBE McDOWELL CATAWBA PITT ROWAN BEAUFORT SWAIN HYDE JOHNSTON RUTHER- FORD GRAHAM LINCOLN GREENE LEE HENDER- SON CABARRUS CLEVELAND JACKSON WAYNE HARNETT GASTON TRAN- SYLVANIA MONT- GOMERY LENOIR MOORE MECKLEN- BURG STANLY POLK CHEROKEE CRAVEN MACON PAMLICO CLAY CUMBER- LAND JONES SAMPSON RICH- MOND HOKE DUPLIN UNION ANSON SCOT- LAND CARTERET ONSLOW ROBESON BLADEN PENDER NEW HANOVER COLUMBUS BRUNSWICK As of 12/31/03

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. 54 Data Collectors! • 8 BEGINNINGS Parent Educators • 33 EI Teachers • 6 CHACs • 1 CHSLCs (to date, will have 6) • 6 SLPs • 4 Members of Design Team • Director of NC EIP • 3 EIP Administrative Staff • 2 BEGINNINGS Administrative Staff • 3 EIP Regional Directors • Director of NC EHDI Program

14. 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 PLS-4 testing by SLPs (EI, RSP, and contract) Data Collection

15. Data Elements

16. Obtaining Language Assessment Information at Transition • EI File Review • EI transition language assessment scores from: • Rosetti Infant-Toddler Language Scale • Developmental Observation Checklist (DOCS) • Preschool Language Scale-Fourth Edition (PLS-4)

17. PLS - 4 • To be administered to all subjects at ages 3, 4, 5, and 6. • Test results compared with previous year(s) to assess progress • Share results with parents & preschool

18. Preschool Language Scale-4 • Age range birth to 6 years, 11 months • Two subscales • Norm-referenced • Administration time • English and Spanish versions • Routinely used in early intervention • Utilized with children who have developmental delays

19. 114 Subjects Located in 43/100 Counties52 Boys and 62 Girls Ethnicity White - 60% (68) Black - 21% (24) Latino – 15% (17) Asian – 3% (3) American Indian – .5% (1) Bi-racial – .5% (1)

20. Hearing Status of Parents109 Hearing5 Deaf or Hard of HearingLanguage in Home 97 English16 Spanish1 ASL

21. Siblings (N= 113) 19 None 17 Yes, with hearing loss 78 Yes, with no hearing loss 41 have younger siblings 78 have older siblings

22. Other Conditions (N=56; 49%) • Oral motor - 23 (41%) • Orthopedic – 14 (25%) • Vision – 14 (25%) • Genetic – 13 (23%) • Cognitive – 12 (21%) • Chronic Otitis Media – 12 (21%) • Medically Fragile – 9 (16%) • Other – 29 (52%)

23. Age at Referral to BEGINNINGS’s

24. Other Therapies

25. Screening Setting

26. Screening Timelines

27. Screening Timelines 93% of children with only HL were screened by 1 month 80% of all children were Screened by 1 month (Range = 1 to 8 months) 67% of children with Other Conditions were screened by 1 month

28. Re-Screening Timelines 61% (56) of all children re-screened within 1 month of initial screen (Range = .5 mos. – 2 yrs. 11 mos.) 62% (29)of children with Other Conditions re-screened within 1 month of initial screen. 58% (26) of children with No Other Conditions re-screened within 1 month of initial screen

29. Diagnostic ToolsUsed Alone or in Combination ABR OAE Tympanogram VRA ASSR Acoustic Reflex Play Audiometry Unknown

30. Type of Hearing LossAt Referral to BEGINNINGS Sensorineural 100 Conductive 7 AN/AD 5 Unknown 2 Mild 1 Severe 8 Mild/Moderate 23 Severe/Profound 22 Moderate 13 Profound 14 Moderate/Severe 19 Unilateral 9

31. Etiology of Hearing Loss • Genetic 27% • Ototoxicity 3% • Other 27% • Unknown 43%

32. Age at DiagnosisStudy N = 114Age N = 103 50% (52) children diagnosed by 3 months

33. Age at Amplification

34. Type of Hearing Instrument Air Conduction HA 92 Bone Conduction HA 1 Unknown 1 No Amplification 10 In addition, 27 children have personal FM systems, 25 have Cochlear Implants

35. Age at EI Initiation 36% (40)of all children enrolled by 6 months of age. * 51% of children with no other conditions enrolled by 6 mos. * 20% of children with other conditions enrolled by 6 mos.

36. Family Involvement

37. Family Participation Survey

38. Communication Choice

39. For Children Who Sign Average Daily Use of Sign in Home (6 children) Range: 1 to 14 hours Median: 8 hours Mean: 7 hours

40. Average Number of Hours of Hearing Instrument Use Range = 0 to 16 hrs. for all children 10 hours for all children and those with OC’s 11 hours for children with no OC’s

41. Language Assessment at Age 3Preschool Language Scale – Fourth Edition (PLS-4) • Auditory Comprehension Subscale • No OCs • Range: 51-125 • OCs • Range: 50-114 • Expressive Communication Subscale • No OCs • Range: 54-123 • OCs • Range: 50-110

42. Language Assessment at Age 4Preschool Language Scale – Fourth Edition (PLS-4) • Auditory Comprehension Subscale • No OCs • Range: 50-129 • OCs • Range: 50-107 • Expressive Communication Subscale • No OCs • Range: 61-122 • OCs • Range: 50-119

43. 1-3-6 Summary

44. Challenges & Limitations • Conducting a study of this scope with no additional funding. • The number of people involved in data collection. • Management of large amounts of data. • Not all EI screening and diagnostic data are in one place, requiring time-consuming follow-up.

45. “Scope Creep” – the scope of work keeps expanding. • Numerous sources from which data must be collected. • Access to audiological data. • No developmental assessments to match PLS-4. • Cadre of SLPs needed to test at ages 4-6. • Mobility of families (28% drop rate of 4-year olds to date).

46. Next Steps… • Continue testing 4 year olds using the PLS-4. • Begin testing 5 year olds in April 2007. • Further Analysis • Seek funding for the longitudinal study.

47. Thank you!!

48. Contact us: • Kathryn.Wilson@ncmail.net • CTashjian@ncbegin.org