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Longitudinal Study of NC EHDI Program

This study examines the efforts of the NC EHDI Program to achieve the 1-3-6 goals for newborn hearing screening, diagnosis, and intervention. It also examines the language outcomes of children transitioning from Early Intervention to Preschool and follows the language development progress of children who have exited Early Intervention.

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Longitudinal Study of NC EHDI Program

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  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 Director—BEGINNINGS Cyndie Bennett, MA—Superintendent—Office 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 MedicineMember, 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

  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 • Are we meeting our goals for newborn screening and diagnosis? • Are we achieving desired goals for language and communication development in children enrolled in EI? • 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. BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc. Location of Longitudinal Study Children As of December 2005 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 STANLY MOORE MECKLEN- BURG 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 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. 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 Data Collection

  14. Data Elements

  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. Preliminary Findings45 subjects Located in 29/100 counties Gender 27 female 18 male Other Challenges 20 None 3 Unknown 8 One Challenge 3 Two Challenges 10 Three or More Challenges

  18. Hearing Status of Parents42 Hearing3 Deaf or Hard of HearingLanguage in Home39 English5 Spanish1 ASL

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

  20. Other Therapies • None • One or more • One only • Two therapies • Three therapies • Four therapies • 1 Six therapies • 1 Seven therapies

  21. Screening

  22. Rescreen

  23. Diagnostic Tools ABR 23 OAE 15 Tympanogram 10 VRA 7 ASSR 2 Acoustic Reflex 1 Play Audiometry 2 Unknown 2

  24. Type of Hearing LossAt Diagnosis Bilateral 27 Unilateral 3 Unknown 3 Right Ear Sensorineural 20 Conductive 3 AN/AD 4 None 1 Unknown 5 Left Ear Sensorineural 21 Conductive 3 AN/AD 4 None 0 Unknown 5

  25. Type of Hearing LossAt Transition Bilateral 23 Unilateral 2 Unknown 8 Right Ear Sensorineural 16 Conductive 4 Mixed 1 AN/AD 3 Unknown 9 Left Ear Sensorineural 17 Conductive 3 Mixed 1 AN/AD 3 Unknown 9

  26. Age at DiagnosisN = 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 InstrumentsN = 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 HA 37 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 System 12 Cochlear Implant 11

  30. Communication Choice 1st Choice2nd 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

  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!!

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