The Teaching Research Institute/Western Oregon University

1. Influencing Outcomes for Children Who Are Deaf-Blind With Cochlear Implants -Research Studies-Findings-Implications The Teaching Research Institute/Western Oregon University

2. Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A). Grant H327A080045; Project Officer, Maryann McDermott. Opinions express within are those of the project/authors and do not necessarily represent the position of the U.S. Department of Education.

3. PresentersKat Stremel Thomas & Mark Schalock Project StaffTRI – Kat Stremel Thomas; Mark Schalock; Bernie Samples; Peggy Malloy; Cindi MafitEast Carolina University – Susan Bashinski, PhDCincinnati Children’s Hospital Medical Center – Susan Wiley, MD & Charlotte Ruder

5. Acknowledgements • We wish to extend a special thank you to all of the children and their parents who are participating in the study. • We also wish to thank the many State Deaf-Blind projects and private consultants who assisted with the research • We couldn’t have accomplished this task without you!

6. States That Are Represented (26 + DC) • Arizona • California • Delaware • Florida • Georgia • Illinois • Indiana • Kansas • Kentucky • Maryland • Massachusetts/Perkins School for the Blind • Mississippi • Missouri • Nebraska • New Jersey • New York • North Carolina • Ohio (CCHMC) • Oklahoma • Oregon • Pennsylvania • South Carolina • Tennessee • Texas • Virginia • Washington • Washington, DC

7. Three Major Project Phases • Research - Today’s focus • Research to Practice - Intervention Strategies • Practice to Technical Assistance & Training – Methods used to teach caregivers

8. Outcomes: Participants will increase their knowledge of: • …the demographics for children with deaf-blindness who receive cochlear implants (implant to age eight years), • …the research studies currently in progress and the research designs, • …the preliminary findings of the studies and findings of special populations, • …challenges for families, and • …the implications of the findings for families and service providers.

9. 2009 National Child Count for Children Who Are Deaf-Blind 4,313 children have a mod-severe, severe or profound sensorineural hearing loss States increased their identification of children with implants from 251 in 2005, to 581 in 2009 An increased number of children are receiving bilateral implants

10. Outcomes of Project • To collect data on the outcomes and related factors for children (dbci) so that parents can make more informed decisions about implantation, services, types of therapy for their children • To identify factors underlying more positive outcomes with the long-term objective of improved intervention and access to opportunities for language growth

11. Research Studies • Study A – What effect does age at implant and hearing age have on child outcomes? • Study B – What are the differences in the caregiver’s verbal interactions before and after implant? • Study C – What are the effects of individualized interventions carried out by the caregivers post implant in natural environments? (In Progress)

12. Research: Children Who Are Deaf-Blind With Cochlear Implants • Participants Status: How many children are participating? • Demographics: Who are these children?

14. Participant Demographics • Participants with bilateral implants = 19

15. Participant Demographics

16. Participant Demographics

17. Participant Demographics Additional Challenges 58.7% have physical challenges 55.9% have cognitive challenges 20.6% have behavior challenges 63.7% have complex health care needs

18. Participant Demographics Participants’ Age at Implant Range = 6 months to 6 years 0 months 12 months or younger = 14 13 - 24 months = 33 25 – 36 months = 23 37 – 48 months = 5 over 48 months = 8 (Participants ranged up to 8 years of age at time they joined study)

19. Participant Demographics Participants’ Duration with Implant as of most recent Assessment: Time in Sound/Hearing Age Range = 2 month to 5 years 0 months 12 months or less = 20 13 - 24 months = 15 25 – 36 months = 12 37 – 48 months = 11 over 48 months = 26 * A large number of our young participants have little “time in sound.”

20. Research Studies • Study A: What effect does age at implant and hearing age have on child outcomes? • N = 86 • Longitudinal design • Outcomes: Taken from a battery of assessments

21. Assessments A battery of assessments were selected that examined child behaviors across a variety of domains, across the age range from birth to 60 months & included small increments across items. The Rynell-Zinkin Scales have been validated for children with low vision and blindness. The assessments are repeated across time (depending on post implant or pre-implant status; at least annually for post).

22. Assessments Used In the Research/Intervention Project Communication & Symbolic Behavior Scales Developmental Profile MacArthur-Bates Communicative Developmental Inventories (W&G;W&S) Reynell-Zinkin Scales (7 sub-scales) • Infant-Toddler Meaningful Auditory Integration Scale or Meaningful Auditory Integration Scale • Speech Intelligibility Measures

23. STUDY A: Example Data Analyses REYNELL-ZINKIN Response to Sound Vocalization and Expressive Language Age at Implant “Time in Sound” Age at Assessment

24. Example Data Analyses

25. Example Data Analyses

26. Example Data Analyses

27. Example Data Analyses

28. Example Data Analyses

29. Example Data Analyses

30. Reynell-Zinkin Response to Sound Little relationship between age at implant and receptive language Significant, but weak relationships between hearing age and age at assessment and receptive language Children’s receptive language DOES improve significantly over time post implant Children’s receptive language DOES improve significantly from pre to post implant

31. Example Data Analyses

32. Example Data Analyses

33. Example Data Analyses

34. Example Data Analyses

35. Example Data Analyses

36. Example Data Analyses

37. Reynell-Zinkin Vocalization and Expressive Language • Little relationship between age at implant and expressive language • Significant, but weak relationships between hearing age and age at assessment and expressive language • Children’s expressive language DOES improve significantly over time post implant • Children’s expressive language DOES improve significantly from pre to post implant

38. Data for Post Implant ChildrenN=83

39. Data for Pre-Post Implant ChildrenN=19

40. Post-CI Data for Children with CHARGE (N=20)

41. The children in the study are a very diverse group. With this diversity comes complex relationships rather than simple relationships between such things as age and outcomes These children (as a group) do experience improvements in receptive and expressive language pre to post implant. Individual outcomes vary considerably. Overall Findings to Date: Study A

42. Overall Findings to Date: Study A • The children (as a group) do experience improvements in receptive and expressive language over time after receiving an implant. • Individual outcomes vary considerably.

44. Study B - Research Question: Do caregivers talk to the child more after implantation compared to pre-implant? • Use of the Language Environmental Analysis to record: - the audio enviornment - the adult’s verbalizations - the child’s vocalizations - the turns in conversation

45. LENA Data Auditory Environment Meaningful Talk Distant Talk TV Noise Silence Adult Words Child Vocalizations Conversational Turns Estimated Mean Length of Utterance Estimated Developmental Age (in months) Standard Score Percentile

46. LENA Data

47. LENA Data

48. LENA Data

49. LENA Data

50. LENA Data