Longitudinal%20Study%20of%20NC%20EHDI%20Program

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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
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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
--Director--Division of Speech and Hearing
Sciences, UNC-CH School of MedicineFormer
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
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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.
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The goals of the NC EHDI program reflect the
recommendations set forth by the Joint Committee
on Infant Hearings Year 2000 Position
Statement Principles and Guidelines for Early
Hearing Detection and Intervention Programs
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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.

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• 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.

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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.

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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.

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Study Design

• Longitudinal
• Statewide in scope
• Representative
• Pilot Phase

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Study Subjects

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

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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
VANCE
CASWELL
PERSON
1
HALIFAX
GRANVILLE
2
CHOWAN
WATAUGA
WILKES
YADKIN
BERTIE
FRANKLIN
FORSYTH
GUILFORD
AVERY
DURHAM
ORANGE
MITCHELL
YAN- CEY
ALAMANCE
EDGE- COMBE
CALDWELL
NASH
ALEX- ANDER
DAVIE
WASH- INGTON
MADISON
DAVID- SON
MARTIN
DARE
IREDELL
TYRELL
WAKE
BURKE
RANDOLPH
WILSON
CHATHAM
HAY- WOOD
BUN- COMBE
CATAWBA
McDOWELL
ROWAN
PITT
BEAUFORT
SWAIN
HYDE
JOHNSTON
RUTHER- FORD
GRAHAM
LINCOLN
GREENE
LEE
HENDER- SON
CABARRUS
CLEVELAND
JACKSON
WAYNE
HARNETT
GASTON
TRAN- SYLVANIA
MONT- GOMERY
LENOIR
MECKLEN- BURG
MOORE
STANLY
CHEROKEE
POLK
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
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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

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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

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Data Collection

• 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)

• 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

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

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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

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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

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114 Subjects Located in 43/100 Counties 52
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)
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Hearing Status of Parents109 Hearing5 Deaf or
Hard of Hearing Language in Home 97
English16 Spanish1 ASL
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Siblings (N 113) 19 None 17 Yes, with hearing
loss 78 Yes, with no hearing loss 41 have younger
siblings 78 have older siblings
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Other Conditions (N56 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)

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Age at Referral to BEGINNINGSs
All OCs No OCs
By 3 mo. 33 9 24
By 6 mo. 16 5 11
By 12 mo. 31 8 23
By 18 mo. 14 8 6
By 24 mo. 13 6 7
By 36 mo. 7 4 3
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Other Therapies
All OCs No OCs
SLT 44 27 17
AVT 6 1 5
PT 32 26 6
OT 28 24 4
Vision 10 10 0
Nursing 6 5 1
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Screening Setting
All (n104) OCs (n50) No OCs (n51)
WBN 46 14 30
NICU 34 24 9
Unknown 22 11 11
Other 2 1 1
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Screening Timelines
Months from DOB All (n86) OCs (n42) No OCs (n41)
1 69 28 38
2 7 6 1
3 3 1 2
4 4 4 0
Up to 8 mo. 3 3 0
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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

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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

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Diagnostic ToolsUsed Alone or in Combination
ABR OAE Tympanogram VRA ASSR Acoustic Reflex Play
Audiometry Unknown
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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/Se
vere 19 Unilateral 9
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Etiology of Hearing Loss

• Genetic 27
• Ototoxicity 3
• Other 27
• Unknown 43

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Age at DiagnosisStudy N 114Age N 103
50 (52) children diagnosed by 3 months
All OC No OC
Range .5-31 mos. 1-31 mos. .5-25 mos.
Median 3 mos. 5 mos. 3 mos.
Mean 7 mos. 7 mos. 6 mos.
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Age at Amplification
All (n 96) OCs (n 44) No OCs (n 50)
Range 1 to 35 months 1 to 35 months 1 to 31 months
Mean 12 months 15 months 11 months
Median 11 months 12 months 7 months
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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
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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.
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Family Involvement
EI Session Setting Almost Always Sometimes Rarely
Home 87 11 2
Daycare 6 5 0
SES 1 2 0
Other 2 1 0
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Family Participation Survey
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Communication Choice
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For Children Who Sign
Average Daily Use of Sign in Home (6
children) Range 1 to 14 hours Median 8
hours Mean 7 hours
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Average Number of Hours of Hearing Instrument Use

• Range 0 to 16 hrs. for all children
• 10 hours for all children and those with OCs
• 11 hours for children with no OCs

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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

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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

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1-3-6 Summary
All Children With Other Conditions No Other Conditions
Screened by 1 month of age 80 67 93
Re-screen in 1 mo. of screen 61 62 60
Diagnosed by 3 mo. 50 40 58
Amplified by 6 mo. 38 21 50
EI services by 6 mo. 36 20 51
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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.

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• 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).

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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.

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Thank you!!
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• Contact us
• Kathryn.Wilson_at_ncmail.net
• CTashjian_at_ncbegin.org