Lessons Learned from Universal Newborn Hearing Screening

1
Lessons Learned from Universal Newborn Hearing
Screening

• Christine Yoshinaga-Itano, Ph.D. Marion Downs
  Center
• University of Colorado, Boulder
• Christie.Yoshi_at_colorado.edu

2
Universal Hearing Screening Rates

• The Center for Disease Control (CDC) reports that
  92-95 of all 4 million newborns are screened for
  hearing within one month of birth. (2005-2006
  statistics)

3
Missing Babies

• Research statistics from programs with strong
  follow-through rates (80 or greater) indicate an
  incidence rate of 2 to 3 per 1000 births.
• We have data on only 1 in every 1000 births
  Center for Disease Control http//www.cdc.gov/ncbd
  dd/EHDI/data.htm
• At the most optimistic figure we are able to
  identify and track only 50 of infants who are
  deaf or hard of hearing at birth

4
Why are they missing?

• Not all hospital screening programs can track
  individual infants some report total number
  screened, total referred, total passed
• Physicians do not always aggressively urge
  families to return for follow-up
• Refer rates from hospital screening programs are
  too high

5
Why are they missing?

• There are often too many diagnostic audiology
  sites but few that specialize in pediatrics
• Audiologists do not always know where to refer
• Understanding of the urgency is not universal
  among professional groups interacting with
  parents, i.e., nurses, physicians, Part C,
  audiologists, speech/language pathologists

6
Identified Children with Hearing Loss

• We are currently identifying about 3,528 infants
  with hearing loss (deaf/hard of hearing,
  unilateral, neural, conductive)
• We anticipate that we should be identifying 8,000
  to 12,000 infants
• Of these 3,528 identified infants in 2006, only
  half are identified before 3 months of age (about
  1,700).

7
Infants Identified with hearing loss as a result
of UNHS/EHDI

• 30-40 unilateral
• 60-70 bilateral
• Of the Bilaterals
• 30 mild-moderate
• 30 moderate-severe/severe
• 30 severe-profound/profound
• 10 profound
• 5 deaf of deaf

8
Amplification before 4 months of age

• We currently have no data about how many infants
  who are deaf or hard of hearing receive their
  amplification before 4 months of age.
• Lack of finances for amplification are often
  preventing enrollment into early intervention-
  Infants should be enrolled in early intervention
  immediately upon identification before
  amplification is obtained

9
Infants with hearing loss enrolled in early
intervention

• Of these 1,700 diagnosed before 3 months, only
  46 are enrolled in early intervention services
  before 6 months of age.
• 782 infants are enrolled in early intervention
  before 6 months of age and about 129 of these 782
  infants come from the state of Colorado.

10
Early Intervention Enrollment

• What kind of early intervention are these infants
  enrolled in?
• There is no data regarding whether or not the
  early intervention providers have specialty
  knowledge and skills in the area of deaf and hard
  of hearing infants

11
Early Intervention Providers

• Most of the early intervention services provided
  to these families are through professionals who
  are speech/language pathologists
• Some of the early intervention services are
  provided by deaf educators
• Early childhood special educators provide early
  intervention services to a large portion of these
  families

12
Whose not referred?

• Sometimes children with unilateral hearing loss
• Sometimes children with very mild hearing losses
• Sometimes children with auditory neural hearing
  loss
• But these children do not represent over 50 of
  the identified population

13
What kind of services are infants receiving?

• 57.7 Part C EI
• 7.7 non-Part C
• Non Part C public services may be deafness
  specific services
• Presumably the remainder are receiving private
  services
• We do not know how many Part C programs have
  intervention providers with expertise in hearing
  and deafness.

14
For every 100 children

• For every 100 deaf or hard of hearing newborns
• Only 50 will be identified through UNHS
• Of these about half or 26 infants will be
  identified before 3 months of age
• 32 will be referred to early intervention
  services but only 15 will start early
  intervention before 6 months of age

15
State of emergency extreme urgency

• Several problems have emerged
• Insufficient data management systems
• Too many points of entry into diagnostic
  audiologic evaluations
• Too many points of entry into early intervention
  services

16
Why the urgency?

• Greater chance for the development of age
  appropriate language in language of choice
• Greater chance for the development of age
  appropriate social-emotional and cognitive skills
• Greater chance of auditory skill development
  sufficient for the development of intelligible
  speech

17
Single Point of Entry into Early Intervention

• Establish a single point of entry (a centralized
  referral system) into early intervention services
  with specialists who have knowledge and skills in
  deafness and hearing
• This system is a system of referral and first
  contact
• Not enough specialists in deafness and hearing
• Majority of infants and families are provided
  early intervention services through
  speech/language pathology
• Both the JCIH and a 2005 Office of Disabilities
  report identified the lack of a single point of
  entry is a significant issue for loss to
  follow-through

18
Single Point of Entry into Intervention

• Colorado created the Co-HEARS, Colorado Hearing
  Coordinators, as the single point of entry- under
  CSDB (coordinate with health and education).
  (others California refers through Dept of
  Education. NC refers through Beginnings) It
  is a system that coordinates between health and
  education through the State School for the Deaf
  and Blind
• Colorado system typically provides 10 hours of
  contact that includes information, resource
  guide, counseling, support. This contact is the
  beginning of information.
• Early Intervention Professionals need to
  increase diversity Deaf/HH, racial/ethnic
  diversity
• Guide by Your Side Parents

19

• Currently, Colorado is the only state that
• screens over 95 of its infants
• Has greater than an 80 follow-through rate to
  diagnostic audiology
• Diagnoses over 80 of the infants before 3 months
  of age
• Enrolls over 80 of the infants before 6 months
  of age in early intervention services specific to
  hearing loss

20

• Documents the developmental outcomes of the
  infants/toddlers/children who are deaf or hard of
  hearing longitudinally. Demonstrates age
  appropriate development through 7 years of age
  with the same assessment protocol.
• Assures that early-identified children of all
  degrees of hearing loss, receive appropriate
  intervention programs as demonstrated by their
  language developmental growth curves.

21
Developmental Outcomes Assessment

• States must be able to report the age of
  enrollment into early intervention and initiation
  of early intervention services
• The professional expertise of the provider
• The quantity and frequency of early intervention
  services
• The developmental outcomes of the children
  enrolled same instruments on all children in
  the state (capable of documentation across
  languages other than English).

22
Components of the system

• Single point of entry- Co-HEAR
• Deafness/Hard-of-hearing specific early
  intervention services
• Developmental outcomes reporting
• Parent-to-parent support
• Deaf/Hard-of-hearing role model/mentor
• Deaf/CODA/interpreter sign language instruction
  (native/fluent sign instruction)

23
Speech piggybacks onto Sign Fast-mapping from
sign to speech 

• Christine Yoshinaga-Itano
• Allison Sedey
• Kristin Uhler

24

• Yoshinaga-Itano, C. (2006). Early
  Identification, Communication Modality, and the
  Development of Speech and Spoken Language Skills
  Patterns and Considerations. In M. Marschark
  P.E. Spencer, Advances in the spoken language of
  deaf and hard-of-hearing children. New York
  Oxford University Press, pp. 298-327.
• Yoshinaga-Itano, C. (2005) From Sign language to
  spoken language Evidence of a lexical piggyback
  in the language of children with cochlear
  implants, SRCLD (Society for Research in Child
  Language Development), Wisconsin, June 10, 2005

25
Children who signed pre-implant

• Selected children who signed in gt 50 of
  utterances at pre-implant tape
• Sign instruction deaf/fluent or native signer
• No additional disabilities that interfere with
  language development
• N 29

26
Assessment

• Spontaneous Language Sample
• 25 minutes of interaction
• Child interacted with parent or teacher
• Free play/conversation
• Transcribed and analyzed by SALT
• Spoken and sign language transcribed

27
of Words Produced in Spoken Language (with or
without sign)
28
of Words Produced in Spoken Language (with or
without sign) with hearing conversational partner
29
Participant ZECI at 13 mo. Early ID
of Words Spoken
Months Post Implant
30
Participant SeCCI at 18 mo. Early ID
of Words Spoken
Months Post Implant
31
Participant DCImplant at 20 mo early ID
of Words Spoken
Months Post Implant
32
Participant IvanCI at 20 mo.early ID
of Words Spoken
Months Post Implant
33
Participant HillaryCI at 20 mo.early ID visual
disability
of Words Spoken
Months Post Implant
34
Participant SCCI at 20 mo.early ID
of Words Spoken
Months Post Implant
35
Participant BMCI at 24 mo. Early ID
of Words Spoken
Months Post Implant
36
Participant SWCI at 27 mo. Late ID

• .

of Words Spoken
Months Post Implant
37
Participant EllenCI at 30 mo. (late ID 9 mo.)
of Words Spoken
Months Post Implant
38
Participant WMCI at 30 mo. Early ID
of Words Spoken
Months Post Implant
39
Participant GTCI at 36 mo.- late ID
of Words Spoken
Months Post Implant
40
Case WJ Post MeningitisCI at 13 mo. Auditory
verbal
of Words Spoken
Months Post Implant
41
Summary

• On average, children who communicated primarily
  with sign language and no speech before receiving
  a cochlear implant
• Used spoken language (with or without signs)
  about 50 of the time with hearing parents after
  6 to 12 months of implant use
• Used spoken language (with or without signs)
  about 80 of the time with hearing parents after
  18 to 24 months of implant use
• All Colorado CI surgeons and implant teams
  support use of sign language pre and post
  implantation in conjunction with auditory/speech
  intervention

42

• Age at implantation has dropped to 12-15 months
  of age
• Bilateral implantation increasingly common
• Speech and auditory skill development has been
  even faster, with infants/toddlers mastering
  age-appropriate phoneme discrimination within one
  to three months post implantation.
• Success rate greater than any other published
  studies to our knowledge for both speech and
  language
• About 50 continue sign language after speech is
  intelligible

43
Longitudinal development of early and
later-identified children

• Rosalinda Baca
• Christine Yoshinaga-Itano

44
Age appropriate language is lasting

• 244 children with longitudinal language data from
  12 months through 7 years, at least 3 assessments
• 3 birth cohorts before UNHS (lt1992), 1992-1998
  (partial UNHS), after 1999 (UNHS established)
• Normal cognitive, low cognitive
• Hearing loss mild, moderate, severe, profound

45
Ordinary Least Squares Regression Trajectory
Across the Full Sample
46

• Taking both children with normal cognitive
  function and those with low cognitive ability,
  the growth curve line is an average developmental
  growth curve over time. All of the children
  above the line are functioning within the normal
  range, though those at the line are borderline
  average.

47
Colorado Longitudinal Hierarchical Linear
Modeling 21 mo. To 66 mo.Baca Yoshinaga-Itano
48
Three birth cohorts

• Before 1992 UNHS began at two birthing
  hospitals in 1992, none of the children born
  before 1992 had hearing screened at birth in
  Colorado
• 1992-1998 Beginning with two birthing
  hospitals, the state gradually added 60 of the
  birthing hospitals. 1998 legislation was passed
• By 1999, all birthing hospitals began screening
  prior to hospital discharge.

49
Hierarchical Linear Modeling 21 mo. To 66
mo.Baca Yoshinaga-Itano

• Blue (n21) Before 1992, Red (n147)
  1992-1999Green (n76) After 1999

50
Developmental Growth Curves

• The mean developmental language growth of the
  children born after universal newborn hearing
  screening is significantly better than any other
  birth group but still not equal to the mean
  language growth of children with normal hearing.
• The growth curve is within the low average range
  for children with normal hearing (normal range)
  for children born after 1999.

51
Children with multiple disabilities

• Approximately 40 of the children who are deaf or
  hard of hearing have multiple disabilities
• Many have cognitive disabilities

52
Fitted Linear Trajectories by Cognitive Quotient
LQ at 18Mo 71.17 LQ at 36Mo 55 Slope.39
LQ at 18Mo 91.67 LQ at 36Mo 80.28 Slope.69
53
Growth curves by cognitive levels

• Children with normal cognitive ability have
  significantly stronger language growth curves
  than those with low cognitive ability.
• These graphs do not take age of identification or
  degree of hearing loss into account.

54
Children with cognitive disability

• Developmental language growth, on average, is
  half of the rate of children with normal
  cognitive ability

55
Degree of Hearing Loss and Cognitive Ability

• For children with low cognitive ability, degree
  of hearing loss does not have great impact
• For children with normal cognitive ability,
  degree of hearing loss plays a greater role, mild
  versus all other degrees of hearing loss

56
DOHL BY COG GROUP
57

• This graph takes into account two variables
  degree of hearing loss and cognitive ability. It
  does not take into account year of birth or age
  of identification of hearing loss
• As children get older, degree of hearing loss for
  those children with normal cognitive ability,
  plays a greater role.

58
DOHL by COG
Norm/High
Low
59
Year of birth with normal cognitive

• Language quotients decreased from 18 to 36 months
  for all groups
• Language quotients for infants born after UNHS
  with normal cognitive decreased but were well
  within the normal range
• LQ99 at 18 mo. And LQ87 at 36 months

60
Year of Birth Groups Separated by Cognitive
Quotient
Norm/High
Low
61
YOB and DOHL
62
State High-Stake Assessment Considerations

• Performance compared to all students
• Caveat only includes students with IEPs
• Test accommodations
• Test bias
• Alternate assessment
• 1 - based on alternative achievement standards
• 2 - based on modified achievement standards
• What we can learn
• Example Colorado Student Assessment Program
  (CSAP)

63
CSAP Reading 2001-2005 (DHH students)
64
Growth Profile CSAP Reading 2004-2005 (DHH)
65
Growth Profile CSAP Writing 2004-2005 (DHH)
66
Growth Profile CSAP Math 2004-2005 (DHH)
67
Summary of CSAP Outcomes

• Strong Effects on Outcomes-Prioritized
• Early Intervention
• Extra-curricular activities
• Age of identification of HL
• Spoken language
• Degree of HL
• Free reduced lunch as detriment to performance
• Level of service matches student needs
• Most students are making acceptable growth
• 1 years growth in 1 year must be the standard

68
AZ-CO Longitudinal Study of Mainstream DHH
Students 2001-2006 (Research Team Antia,
Kreimeyer, Reed, Stryker, Luckner, Johnson)

• Findings Academic Outcomes (Math, Reading,
  Language) N150
• Average performance is within 1 SD of mean of
  hearing peers
• Performance is stable across grade levels
• Students are making on average one years growth
  in one years time

69
AZ-CO Longitudinal Study of Mainstream DHH
Students 2001-2006

• Findings Student Effects on Academic, Social,
  and Communication

• Facilitating Factors Hard worker
• Capable
• Intelligent
• Motivated
• Self advocate
• Social
• Uses amplification consistently
• High expectations

• Detracting Factors
• Late identification of loss
• Language delays
• Unmotivated
• Additional disabilities
• Poor attendance

70
Successful Attributes for DHH Students (Luckner
Muir, 2001)

• Collaboration Consultation
• Pre-teach, Teach, Post-teach
• Early Identification Early Intervention
• Reading
• High Expectations

• Family Involvement
• Self-Determination
• Extra-Curricular Involvement
• Friendships Social Skills
• Self-Advocacy

71
Successful Attributes for DHH Students (Luckner
Muir, 2001)

• Collaboration Consultation
• Pre-teach, Teach, Post-teach
• Early Identification Early Intervention
• Reading
• High Expectations

• Family Involvement
• Self-Determination
• Extra-Curricular Involvement
• Friendships Social Skills
• Self-Advocacy

72
Research Summary Corroborating factors
influencing positive outcomes for DHH children

• CIPP/CSAP
• Early intervention
• Extra-curricular participation
• Early identification

• AZ-CO
• Early identification
• Motivated
• Self-advocate
• Social

• Luckner Muir
• Early Identification Early Intervention
• Self-Determination
• Friendships and social skills
• Extra-Curricular Involvement
• Self-Advocacy

73
Research Summary Corroborating factors
influencing positive outcomes for DHH children
74
The time is now

• It is within our reach to provide children who
  are deaf or hard of hearing with appropriate
  intervention services that can allow them to
  develop age-appropriate or cognitively
  appropriate language and social-emotional skills,
  but it will take a significant effort to develop
  collaboration and memorandums of agreement.