Method and Participants Study 1 (n=148) Data collected through the GO4KIDDS online survey examining the general health, well-being, and social inclusion of children with severe DD, and their parents – used questions specific to SLP and AAC Parents: 95% mothers, 92% biological parents, 77% married Diverse sample (wide range SES avg. Barratt SES = 40 (SD=13) from across Canada (see map); 23% not born in Canada, 17% first language other than English Children: 71% boys; age 3-19 years (M = years) Adaptive Age Equivalent from SIB-R: range 3 months to 13 years (M=3.25 years) Maladaptive Behavior Index from SIB-R: range -56 to 4 (M=-15.90) 55% with ASD (by parent report) Method and Participants Study 2 (n=12) Parents: all mothers, recruited from Study 1, private agency, special school, and websites Telephone interview conducted ( hours) in two sessions (1. screening, consent and SIB-R; 2. AAC interview) Children: 58% boys (n=7); age 4 – 17 (M = years); 25% DD (n=3), 75% ASD (n=9) Purpose and Research Questions Study 1. Quantitative Parent Online Survey 1.How many children are using AAC systems? How do they differ from non-users of AAC? 2.Among users of AAC systems, what systems are used? 3.How effectively do children communicate with their AAC system? Does it help them communicate better than unaided speech? 4.How do factors such as diagnosis, adaptive, and maladaptive behaviour affect how children with DD use AAC? Study 2. Qualitative Study based on Parent Interviews exploring themes including: AAC use, experiences of AAC longitudinally, the transition process, community participation, specific functional communication skills with AAC, and AAC service system issues/barriers A Two-part Investigation of Augmentative and Alternative Communication Use in Canadian Children Melissa Rourke 1,2 Adrienne Perry 1,2 Tracie Lindblad 1,3 1 Team GO4KIDDS 2 York University, Toronto, Ontario 3 Child Development Centre of Oakville, Ontario, Canada Acknowledgments: We would like to thank all the families who completed the Surveys and interviews for this study. We are very grateful to Teresa Lee for her assistance with recruitment and data collection and Azin Taheri for her assistance with the GO4KIDDS data. Data for Study 1 were collected as part of the CIHR Team: GO4KIDDS: Great Outcomes for Kids Impacted by Severe Developmental Disabilities, Nominated Principal Investigator: Adrienne Perry, York University. ( Background AAC systems are methods/techniques used to augment or replace children’s spoken language AAC systems range from “low-tech” (e.g., basic yes/no systems, or velcro-backed pictures) to “high-tech” (e.g., voice output communication aids including iPADs) There is a lack of empirical group-based studies in the literature and a need to document AAC usage and its effectiveness in a Canadian sample Results (Study 1 cont’d) 2. Among AAC users (n=63) what AAC system(s) are used? 4 Categories of AAC use: Basic AAC (24%): yes/no switches, basic signs, gestures, etc., Picture Exchange Communication System (PECS; 32%): Bidirectional exchange of pictures with a communicative partner Voice Output Communication Aids (VOCAs; 14%): Electronic speech generating devices, e.g., Dynavox or iPADs Sign language (31%): Using signs as a sophisticated language Results (Study 1 cont’d) 4. What factors affect AAC use (con’t)? Results (Study 2; n=12) 1. AAC Use Primary AAC: VOCAs: 75% (n=9); PECS: 25% (n=3) Multiple AAC: 42% (n=5; 1 to 4 systems currently in use) Number of AAC systems over time: (M = 3; 1 to 5 systems) 2. Transition Process (from one AAC system to another) 50% (n=6): easy or good transition, 50%: somewhat difficult or difficult transition. Parents expressed a need for more supportive services during transition process 3. Participation and Communication with AAC (where and with whom?) Children communicated best at home, in school, and in therapeutic settings. Children did not communicate as much or as well with grandparents, other relatives, strangers, in the community, and at recreational activities. Children use AAC primarily to request 83% (n=10) and make choices 75% (n=9) 4. AAC Services and Barriers Only 33% (n=4) children received a formal AAC assessment, other families bought for themselves, or received informally through other therapy programs Only 50% (n=6) received follow-up services AAC Services are fractured, disorganized, and difficult to access Lack of funding, long waitlists (parents often don’t wait and pay out of pocket) Disconnect between school system and private/public healthcare system services Results (Study 1) 1. Comparing AAC users to non-AAC users 63 AAC users (42%) vs. 85 non-users (58%) Users of AAC had lower levels of spoken communication, measured on a 4-point ordinal scale ( χ 2 =20.62, p<.001), AND lower adaptive skill levels on the SIB-R (t=2.04, p=.04). Users of AAC did not differ in Maladaptive behaviour or age, nor the proportion with ASD, compared to non-users of AAC Benefit ~50% No Benefit ~50% “How much does ______ use spoken language to communicate?” “Can you indicate generally how well _______ communicates using his/her system?” ☐ Able to use very little meaningful speech ☐ Able to use very little meaningful communication ☐ Able to communicate basic needs and wants ☐ Able to communicate needs, wants, and some needs ☐ Able to communicate within a limited range of topics in a meaningful way Comparing communication level with speech vs. AAC in each individual child 4. What factors affect AAC use? Diagnosis Children with ASD were more likely to be using PECS, while children with DD were more likely to be using Sign language (χ 2 =8.43, p=.038) Children in the ASD group showed significantly higher levels of maladaptive behaviour than children with DD (F=7.86, p=.007) The two groups did not significantly differ in age (F=.01, p=.937), or adaptive age (F=.08, p=.783) * * School Home Community Clinical Settings Communicative Functions and Participation Adaptive Age Children with a lower adaptive age had lower levels of communication with AAC (F=5.99, p=.001) Adaptive skill level did not affect: the type of AAC system used, or improvement with AAC Maladaptive Behaviour Level Maladaptive behaviour significantly affected the type of AAC system used (F=3.11, p=.034) (PECS group had most severe Maladaptive) Maladaptive behaviour did not affect: level of communication with AAC, or improvement with AAC * *