Cochlear Implants Multiple Disabilities: What We ve Learned So Far

1. Cochlear Implants & Multiple Disabilities: What We�ve Learned So Far Ella L. Taylor Western Oregon University Susan M. Bashinski University of Kansas 2008 Council for Exception Children Conference Boston, MA

2. Session Goals Status of research on children with multiple disabilities and cochlear implants Challenges of working with multiple partners Characteristics of children with deaf-blindness who have cochlear implants Impact of CI on communication

3. Trends in Cochlear Implantation FDA continues to lower the age of eligibility for receiving a cochlear implant Cochlear implant centers are reporting a dramatic increase in the number of bilateral implants CI technology continues to advance (i.e., the number of implant channels, amount of damage done to ear physiology by implant, etc.)

4. Research on CI & Multiple Impairments Edwards (2007) reviews the small amount of research focusing on CI and children with multiple disabilities General findings from her examination: Cognitive functioning is one of the strongest predictors of progress in developing speech perception and speech production Parents report satisfaction with CI due to increased eye contact, awareness of the environment and response to requests.

5. Trends in Results of Cochlear Implantation (HI only) Earlier ages for implantation are associated with more significant, and rapid, progress Variability in outcomes continues to exist, especially for children who receive implants at older ages Orally-focused post-implant habilitation is, generally, associated with more positive outcomes than is total communication

6. Importance of This Research Project States across the country are reporting: A significant increase in the number of children with DB receiving implants Increasing numbers of children with multiple disabilities receiving implants

7. Importance of This Research Project Current extant literature base nearly entirely reports data re: cochlear implants with children who are deaf Very limited data exist regarding post-implant outcomes for children with deaf-blindness Outcomes with children who are deaf are NOT transferable to children with deaf-blindness

8. Purpose The overall purpose of this project is NEITHER to: encourage families of children who have DB to seek out an implant NOR to discourage families from doing so. The purpose of the study is to establish a database that families, in the future, might consult to make more informed decisions.

9. Research Partners Deaf-Blind Services Projects in 22 states (AZ, CA, CT, DE, FL, GA, IL, KS, KY, MA, MD, MN, MO, NC, NE, NJ, NY, OH, OK, OR, PA, TX) Cochlear Implant Centers: Midwest Ear Institute (Kansas City, MO) Cincinnati Children�s Hospital (Ohio) Boys� Town National Research Hospital (Omaha, NE)

10. Challenges Numerous collaborative partners exacerbate the challenge of compliance with IRB requirements Completion of subcontracts and / or collaborative agreements has had a negative impact on ID & consent with participants Identification and assessment of pre-implant participants has been difficult because of health and scheduling variables

11. Assessment Package CIDB Project Demographic Survey MacArthur-Bates Communicative Development Inventories Words & Gestures Words & Sentences Communication & Symbolic Behavior Scales Developmental Profile (CSBS-DP) Reynell-Zinkin Developmental Scales for Young Children with Visual Impairments Speech Intelligibility Rubric C-SIM

12. Assessment Schedule Participants are divided into three groups, for purposes of assessment: Pre-implant Post-implant Implant less than seven years Implant for seven years or longer Assessment schedule varies according to the amount of time the child has had a cochlear implant

13. Participants Demographics reported here are in regard to 63 participants: Chronological age: 13 mos. to 12 yrs. 7 mos. Gender: 64% male, 36% female Ethnicity: 70% Caucasian 13% Latino 13% African-American 2% Native American 3% Other Prematurity : 1 out of every 2 born prematurely CI Status: Pre-implant (19%), Post-implant (81%)

14. 47% were premature

15. Participants� Vision Status

16. Participants� Hearing Status ALL participants have severe or profound hearing loss-MUST have to qualify for cochlear implant 76% born with hearing impairment 6% of those tested diagnosed with central auditory processing disorder (CAPD) 27% of those tested diagnosed with auditory neuropathy (AN) Six children have bilateral CI

17. Participants� Age at Implant Demographics reported below are in regard to 51post-implant participants: Range: 6 months to 10 years, 7 months =12 months = 12% 13 � 24 months = 33% 25 � 36 months = 18% 37 � 48 months = 11% 49 � 60 months = 12% > 5 years = 14% Median implant age: 28 months

18. Time in Sound (months)

19. Duration with Implant�Time in Sound�

20. Additional disabilities

21. Percentage with additional impairments

22. Communication (initial assessment) Large percentage of participants demonstrate little vocabulary comprehension (> 75%) 92% pre have less than 5 words 75% post have less than 5 words Large percentage have little vocabulary production (>80%) 92% pre have less than 10 words 88% post have less than 10 words

23. Data Trends: MacArthur-Bates(initial assessments)

24. First Communicative Gestures(initial assessment)

25. Data Trends: MacArthur-Bates Children who had implants for longer duration demonstrated increased output of �first communicative gestures� (n = 23, p < .10) (e.g., Extends arm to give something, Extends arms to be picked-up)

26. Bilateral Cochlear Implants Six participants have bilateral cochlear implants Tend to be younger Introducing Grace

27. Preliminary Findings Population of children with DB is extremely diverse; receiving a cochlear implant is not associated with any particular etiology Majority of participants have two or more additional disabilities (beyond DB) Younger participants in study, as a group, received their implants at earlier ages Participants in study, who had more additional disabilities, as a group received their implants at older ages Participants appear to be demonstrating tremendous variability in their outcomes

28. Preliminary Findings Implantation at an earlier age appears to be associated with more rapid, significant progress Participants with longer �time in sound� appear to demonstrate increased output Participants appear to be showing increased vocalizations during play, after CI Participants appear to begin to show small increases in response to gestures and words

29. Concerns and Limitations Incredible variety in participants� cochlear implant wearing patterns Reportedly: some children wear their implants during all waking hours many children wear their implants only at school a number of children wear their implants inconsistently-home and school some participants� families have discontinued use of their child�s implant (as much as 10% reported in some states)

30. Concerns and Limitations Intensity, frequency, and types of available intervention / habilitation vary widely across children and families Tremendous need exists for appropriate intervention / habilitation techniques for implementation with children who have concurrent vision and hearing losses AND additional disabilities

31. Concerns and Limitations Severe shortage of personnel trained in auditory-verbal (A-V) therapy techniques Even therapists trained in AV techniques are unsure of how to adapt these for implementation with children with DB

32. Acknowledgements USDE grant award H327A050079 Co-Investigators: Kat Stremel, NCDB Lisa Cowdrey, Midwest Ear Institute State Deaf-Blind Project directors Teachers and families who allowed us to complete research in their classrooms and homes

33. Contact Info Susan M. Bashinski (sbashins@ku.edu) Ella Taylor (taylore@wou.edu) Project Website http://www.wou.edu/cidb