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Cochlear Implants & Multiple Disabilities: What We’ve Learned So Far Cochlear Implants & Multiple Disabilities: What We’ve Learned So Far

Cochlear Implants & Multiple Disabilities: What We’ve Learned So Far - PowerPoint Presentation

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Cochlear Implants & Multiple Disabilities: What We’ve Learned So Far - PPT Presentation

Cochlear Implants amp Multiple Disabilities What Weve Learned So Far Ella L Taylor Western Oregon University Susan M Bashinski University of Kansas 2008 Council for Exception Children Conference ID: 767499

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Cochlear Implants & Multiple Disabilities: What We’ve Learned So Far Ella L. TaylorWestern Oregon UniversitySusan M. BashinskiUniversity of Kansas2008 Council for Exception Children ConferenceBoston, MA

Session Goals Status of research on children with multiple disabilities and cochlear implantsChallenges of working with multiple partnersCharacteristics of children with deaf-blindness who have cochlear implantsImpact of CI on communication

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

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

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

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

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

Purpose The overall purpose of this project is NEITHER to: encourage families of children who have DB to seek out an implantNOR 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.

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)

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

Assessment Package CIDB Project Demographic SurveyMacArthur-Bates Communicative Development InventoriesWords & GesturesWords & SentencesCommunication & Symbolic Behavior Scales Developmental Profile (CSBS-DP)Reynell-Zinkin Developmental Scales for Young Children with Visual Impairments Speech Intelligibility Rubric C-SIM

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

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%)

47% were premature Etiology Percentage Complications of prematurity 26% Unknown 24% CHARGE 20% Meningitis 6% Refsum Syndrome 4% CMV (Cytomeglovirus) 4% Asphyxia 2% Klippel-Feil sequence 2% Pierre-Robin syndrome 2% Usher syndrome 2% Congenital Rubella 2% Hydrocephaly 2% Maternal drug use 2% Leber congenital amaurosis 2%

Participants’ Vision Status Vision ImpairmentParticipants Low vision (<20/200) 11% Legally blind 29% Light perception only 6% Totally blind 17% CVI 23% Diagnosed progressive loss 4% Further testing needed 11%

Participants’ Hearing Status ALL participants have severe or profound hearing loss-MUST have to qualify for cochlear implant76% born with hearing impairment6% of those tested diagnosed with central auditory processing disorder (CAPD)27% of those tested diagnosed with auditory neuropathy (AN)Six children have bilateral CI

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

Time in Sound (months)

Duration with Implant “Time in Sound”

Additional disabilities

Percentage with additional impairments

Communication (initial assessment) Large percentage of participants demonstrate little vocabulary comprehension (> 75%)92% pre have less than 5 words75% post have less than 5 wordsLarge percentage have little vocabulary production (>80%)92% pre have less than 10 words88% post have less than 10 words

Data Trends: MacArthur-Bates (initial assessments) Pre-implant Post-implant Min Max Mean Min Max Mean Vocab comprehension (407 items) 0 0 0 0 347 45.88 Vocab production (407 items) 0 32 6.17 0 85 9.27 First communicative gestures (12 items) 0 5 2.16 0 11 3.35 Pretending to be a parent (13 items) 0 1 0.17 0 13 1.12 Imitating adult actions (15 items) 0 9 1.50 0 152.73

First Communicative Gestures (initial assessment)

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)

Bilateral Cochlear Implants Six participants have bilateral cochlear implantsTend to be youngerIntroducing Grace

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

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

Concerns and Limitations Incredible variety in participants’ cochlear implant wearing patterns Reportedly: some children wear their implants during all waking hoursmany children wear their implants only at schoola 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)

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

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

Acknowledgements USDE grant award H327A050079Co-Investigators: Kat Stremel, NCDB Lisa Cowdrey, Midwest Ear Institute State Deaf-Blind Project directorsTeachers and families who allowed us to complete research in their classrooms and homes

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