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