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Emma J Harris, Sharon Ryder and Lisa Totten

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1 Emma J Harris, Sharon Ryder and Lisa Totten
The Positive AACtion Kit: An evidence-based information package for parents, teachers and others supporting school-aged children to use AAC Emma J Harris, Sharon Ryder and Lisa Totten Speech Pathologists Rocky Bay

2 Outline Background All About AAC Working Together
Selecting a Communication Device Trialing a Communication Device Funding for AAC Supporting Communication Device Use

3 What is AAC? Augmentative and Alternative Communication
Assists people with complex communication needs (CCN) to be understood by others Unaided methods (eg gesture, signs, facial expression) Aided methods: Low tech (eg alphabet or picture boards, communication books) High tech (eg speech generating devices-SGDs) First some background… Estimated 0.12% of population in Victoria have CCN (Bloomberg and Johnson, 1990) High tech uses electronics. SGD – voice Total communication – using a combination of AAC methods

4 Reported Positive Outcomes
Positive outcomes in some young children using a variety of AAC methods have been reported by caregivers and include: Improved communication More social opportunities Improved quality of life More educational opportunities Increased independence (Angelo, 2000; Bailey et al, 2006; reviewed in Light & Drager, 2007)

5 AAC Device Return and Abandonment
Estimated 75% of high-tech devices are abandoned by the people who use them (Stevens [Becta] 2006, as cited in Scope, 2007) Impact: Child may not have an effective means of communication Effect of past negative experience (Pendergrass & Vestal, 2002) Costs (finance & otherwise) HOWEVER… Estimated 75% of high-tech devices are abandoned by the people who use them, due to the lack of available training and support Impact People may be less likely to try again Costs to all involved – child, family, schools, therapy providers & funding bodies Commonly available AAC devices range from approx. $200 - $15 000 Hidden learning cost - as time spent learning AAC may reduce time available to learn other skills. Learning AAC device vs academic classroom learning (Beukelman (1991)

6 Commonly Reported Supports and Barriers
Ease of AAC device use Technological barriers, eg Break down Resultant frustration Effective teaming and services Ineffective teaming Family involvement Belief user understood without device Inadequate training A complex network of factors appear to be supports and barriers to AAC device use. Commonly reported supports include.. Device breakdown barrier *Ford - 70% of devices reportedly broke down at least once *McNaughton and colleagues –breakdown of device reported to lead to temporary abandonment of device due to frustration Inadequate training barrier *Allaire and colleagues - only 67% of caregivers reported receiving training for their child’s SGD ____________________ *McNaughton et al. n=7 internet focus group – parents had children ranging from 6 to 30 years of age. *Allaire et al n=18 SGD users who responded to this question. All other participants who did not use electronic AAC devices are not considered here. Ages of total 110 children supported by the caregivers ranged from 2 to 26 years of age. *Bailey interviewed n= 7 caregivers of children using AAC devices. *Johnson et al n=275 ASHA speech pathologists ranking top 5 barriers & supports *Lund & Light n=7 young men with CP who had been using AAC systems for at least 15 years. Also families & professionals associated. Sources: Ford, 2000 as cited in Scope, 2007; McNaughton et al, 2008; Allaire et al, 1991; Bailey et al, 2006; Johnson et al, 2006; Lund and Light, 2007.

7 Supporting AAC Device Users
Best practice includes: Working as a team Integration into everyday routines Providing meaningful opportunities to use device Training and supporting communication partners Ongoing device programming Providing extensive and long-term support (Speech Pathology Australia, 2004; Pendergrass and Vestal, 2002) Now for a run down on some related literature and research in the field. Best practice in AAC includes: Working as a team with the AAC user and their communication partners Integrating assessment, training and practice into everyday routines Providing meaningful opportunities to use device Providing training and support to communication partners* Ongoing device programming to meet changing needs* Providing extensive and long-term support as necessary

8 Perspectives of WA Caregivers
Qualitative interview of 12 Western Australian caregivers of school-aged children who had trialed or used SGDs (Totten and Ryder, 2009) To identify caregiver perceptions on: supports and barriers for positive outcomes roles and responsibilities of team members In order to add to the research and get a local perspective we aimed to…

9 Considerations for Service Delivery
Assessment Family centred Ask about and respect family values Clear articulation of what’s involved Clearly negotiate roles and responsibilities with all stakeholders Show families a range of devices (Totten and Ryder, 2009) *Family centred – include the family in the entire process. *Ask about and respect family values – because they may have an impact on outcomes. *Negotiate roles and responsibilities – because there was variance in caregiver opinions on who should be responsible for particular areas. The findings correlate with the findings of Soto & colleagues. *Show families a range of devices – because that’s what they want.

10 Considerations for Service Delivery
Collaboration Sharing information – a responsibility for all stakeholders Regular meetings Sharing how child uses SGD in different environments Working towards common goals (Totten and Ryder, 2009)

11 Developing the Positive AACtion Kit
Goals: Increase knowledge about AAC systems Provide information in choosing, trialling and/or supporting the use of a SGD Promote evidence-based strategies Emphasise the importance of teamwork Goals: Increase knowledge about AAC systems Provide information in choosing, trialling and/or supporting the use of a SGD Promote evidence-based strategies that maximise participation and educational outcomes across a range of environments Emphasise the importance of teamwork and how it relates to effectiveness of SGD use

12 Developing the Positive AACtion Kit
Received NGCS Funding Contracted a speechie with extensive AAC experience to implement project Invited stakeholders experienced in AAC to provide feedback before finalising Stakeholders advised of kit availability Final copies distributed Positive AACtion Kit available on Rocky Bay website Received NGCS (Non-government Centre Support) Funding Contracted a speechie with extensive AAC experience to implement project Invited stakeholders experienced in AAC (eg parents, educators, therapists) to provide feedback before finalising Stakeholders advised of kit availability Final copies distributed Positive AACtion Kit available on Rocky Bay website

13 Feedback Forms All respondents agreed or strongly agreed:
They now knew more about AAC They now knew more about communication devices Their understanding of strategies to increase communication device success had improved Using the Kit would improve their work with children who use AAC They would recommend the Kit to others CDs with feedback forms distributed to 50 organisations and/or individuals Four feedback forms returned, 2 from speechies and 2 from consultants

14 Online Feedback Positive AACtion Kit was also accessed through the Rocky Bay website Informal feedback was received from 6 individuals via Feedback was unanimously positive “What an amazing resource. As a special ed teacher and mum of ASD children using AAC devices it will prove invaluable.” Informal feedback was received from 6 individuals via , some from the Eastern States and one from UK

15 Use and Layout Part of a collaborative team model
Information sheets given as needed Provide basis for further discussion/planning Information sheets: Link to other info sheets and templates Include a summary of key points Have links to ‘Find Out More’

16 1. All About AAC 1.1 AAC – An Introduction 1.2 Communication Development 1.3 AAC Does Not Hinder Natural Speech Development 1.4 Types of AAC 1.1 AAC – An Introduction Everyone has the right and the need to communicate 1.2 Communication Development AAC supports children’s language and communication development 1.3 AAC Does Not Hinder Natural Speech Development Children need a range of methods to be able to communicate with all people in all situations 1.4 Types of AAC All types of AAC should be valued

17 1. All About AAC Low-tech AAC increased speech production for 89% of subjects (Millar et al, 2006) SGD intervention didn’t hinder and often aided speech development (Romski et al, ) Preschoolers used a variety of AAC systems (Binger and Light, 2006) Millar et al, 2006 – meta-analysis of research from 1975 to 2003, Low-tech AAC increased speech production for 89% of subjects, 27 subjects from 2-60 years, most with intellectual disability or autism. Speech production in remaining 11% of subjects was unchanged. Romski et al, 2010 – Random allocation of 68 toddlers with developmental delays - SGD did not hinder and often aided speech development, aged from 2 to 3 years old to augmented communication input, augmented communication output or spoken communication interventions. Over 50% of those in augmented communication output group used spoken words (statistically significant compared to spoken communication intervention group) Binger and Light, 2006 – Survey of preschool SPs in Pennsylvania.

18 2. Working Together 2.1 A Family Centred Approach to AAC 2.2 What Families Need to Know 2.3 What Schools Need to Know 2.4 What Service Providers Need to Know 2.1 A Family Centred Approach to AAC Applying family-centred principles to AAC 2.2 What Families Need to Know Family involvement is needed for success 2.3 What Schools Need to Know Schools and families must work together 2.4 What Service Providers Need to Know Enter the AAC process with families as a partner

19 2. Working Together Team collaboration was shown to have positive effects in many areas (Hunt et al, 2002) Lack of team collaboration and lack of home support (Kent-Walsh and Light, 2003) Parents “often seemed to feel that they ought to have known more than they did” (Goldbart and Marshall, 2004) Hunt et al, 2002 – Team collaboration to develop and implement plans was shown to have positive effects in many areas, including social interactions with peers and use of AAC . Study included 3 students in general education classrooms (kindy, grade 1 and grade 5). Teams consisted of general education teacher, inclusion support teacher, instructional assistant, SP and one parent. Multiple baseline design with measures obtained through observation periods. Other positive effects were observed in academic skills and engagement in classroom activities. Kent-Walsh and Light, 2003 – Qualitative interview of 11 general education teachers who had a child who used AAC in their classroom, Teachers named lack of team collaboration and lack of home support as barriers to inclusion Goldbart and Marshall, 2004 – Qualitative interview of 11 parents of children who had a child who used AAC - Parents “often seemed to feel that they ought to have known more than they did”.

20 2. Working Together

21 3. Selecting a Communication Device
3.1 Communication Devices 3.2 Assessment in AAC 3.3 Words and Messages on a Communication Device 3.4 Operating a Communication Device 3.1 Communication Devices Describes types and additional features 3.2 Assessment in AAC The entire AAC team is involved in AAC assessment 3.3 Words and Messages on a Communication Device Ensure quick and easy access to core vocabulary 3.4 Operating a Communication Device Take as much time as needed to find the best access method for the child

22 3. Selecting a Communication Device
Many parents reported no input (McNaughton et al, 2008) Parents wanted increased knowledge (Angelo et al, 1996; Angelo et al, 1995) Caregivers wanted more information (Goldbart and Marshall, 2004) McNaughton et al, – Internet based focus group interview of 7 parents of people aged 6 to 30 years with CP who used AAC. Many parents reported having no input in selecting an AAC device provided to their child . Angelo et al, 1996 – Survey of needs, priorities and preferences of parents of children aged 13 to 21 years who used AAC devices parents from 97 families responded. Angelo et al, 1995 – Survey of needs, priorities and preferences of parents of children aged 3 to 12 years who used AAC devices. 91 parents from 59 families responded. Parents expressed a need for increased knowledge of assistive devices Goldbart and Marshall, 2004 – Qualitative interview of 11 parents of children who had a child who used AAC. Caregivers wanted more information to increase their involvement in decision making .

23 3. Selecting a Communication Device

24 4. Trialling a Communication Device
4.1 Trialling a Communication Device 4.2 Planning for a Communication Device Trial 4.3 Setting Goals in AAC – The Basics 4.4 Setting Specific Goals for Communication Device Trials 4.1 Trialling a Communication Device Trial of a communication device is necessary 4.2 Planning for a Communication Device Trial Waiting times are not wasted times 4.3 Setting Goals in AAC – The Basics Clear and specific goals support positive outcomes 4.4 Setting Specific Goals for Communication Device Trials Having only one or few clearly defined goals will keep the team focused

25 4. Trialling a Communication Device
Lund and Light (2006) noted: AAC is not an outcome A good outcome needs to be individually defined Many parents’ key measure of success was independent communication using AAC device (McNaughton et al, 2008) Lund and Light (2006) noted: AAC is not an outcome, it is a tool for end goals of communication and increasing participation A good outcome needs to be individually defined by key stakeholders – critical to include AAC user and family Many parents in an internet focus group reported their key measure of success for their child was independent communication using their AAC device (McNaughton et al, 2008) – Internet based focus group interview of 7 parents of people aged 6 to 30 years with CP who used AAC

26 4. Trialling a Communication Device
Templates: Roles and Responsibilities Checklist AAC Goal Setting Communication Inventory AAC Goal Routine Matrix Communication Device Trial Diary

27 5. Funding for AAC 5.1 Funding for AAC in Western Australia
Government Funding Non Government Funding (Fundraising and Charities) Self Funding Combinations Questions to Ask About Funding and Ownership of a Communication Device

28 6. Supporting Communication Device Use
6.1 Valuing ALL Forms of Communication 6.2 Teaching Strategies – Modelling in Everyday Activities 6.3 Creating Opportunities for Communication 6.4 Prompting Techniques to Support AAC Use 6.1 Valuing ALL Forms of Communication A range of communication methods ensures the child can communicate with all people in all environments 6.2 Teaching Strategies – Modelling in Everyday Activities Input before output! 6.3 Creating Opportunities for Communication The best opportunities occur in daily routines 6.4 Prompting Techniques to Support AAC Use Working towards maximising independence

29 6. Supporting Communication Device Use
AAC modelling assisted preschoolers to produce multi-symbol messages (Binger and Light, 2007) Aided AAC intervention: can teach students to become more effective communicators may have a positive effect on speech (Binger et al, 2008) Multi-symbol messages were produced consistently by 4 of 5 preschoolers receiving aided AAC modelling (Binger and Light, 2007). 3 children used voice output communication systems and 2 used communication boards. One child using a voice output communication system did not show consistent gains. The 4 children who produced multi-synbol messages generalised the skill to other play routines. A review of current research indicated that aided AAC intervention can teach students to become more effective communicators and may have a positive effect on speech (Binger et al, 2008)

30 Appendices Literacy and AAC Transitions and AAC
AAC and Children with Autism Core Vocabulary – Australian Word Frequency List AAC Websites

31 Conclusion The Positive AACtion Kit for AAC teams is now available
Feedback has been positive If you use the Kit, please provide feedback The Positive AACtion Kit for AAC teams is now available on CD or from the Rocky Bay website Feedback from people using the kit has been positive If you use the Kit, please provide feedback, as it will be used to review and update the Kit in the future

32 Thank you to … Acknowledgements
Linda Chiu, Director Clinical Services, Rocky Bay The many people who provided feedback in the planning and development stages of the project The parents from our 2009 research project who inspired this Kit NGCS for funding support

33 Contact Details Rocky Bay Sharon Ryder Senior Speech Pathologist
Ph: Postal address: PO BOX 53, Mosman Park WA 6912 Website: Kit: Rocky Bay Website  Services  Clinical Services Directorate  scroll down to Resources  AAC Action Pack

34 References Allaire, J.H., Gressaard, R.P., Blackman, J.A., Hostler, S.L. (1991) Children with severe speech impairments: Caregiver survey of AAC use. Augmentative and Alternative Communication, 7 (4), Angelo, D.H. (2000). Impact of augmentative and alternative communication devices on families. Augmentative and Alternative Communication, 16, Angelo, D.H., Jones, S.D., Kokoska, S.M. (1995) Family perspective on augmentative and alternative communication: Families of young children. Augmentative and Alternative Communication, 11, Angelo, D.H., Kokoska, S.M., Jones, S.D. (1996) Family perspective on augmentative and alternative communication: Families of adolescents and young adults. Augmentative and Alternative Communication, 12, Bailey, R.L., Parette,H.P., Stoner,J.B., Angell,M.E., & Carroll, K. ( 2006). Family members’ perceptions of augmentative and alternative communication device use. Language, Speech & Hearing Services in Schools, 37 (1), Binger, C. & Light, J. (2006) Demographics of preschoolers who require AAC. Language, Speech & Hearing Services in Schools, 37 (3), Binger, C. & Light, J. (2007) The effect of aided AAC modeling on the expression of multi-symbol messages by preschoolers who use AAC. Augmentative and Alternative Communication, 23 (1), Binger, C., Berens, J., Kent-Walsh, J. & Taylor, S. (2008) The effects of aided AAC interventions on AAC use, speech and symbolic gestures. Seminars in Speech and Language, 29 (2), Bloomberg, K. & Johnson, H. (1990) A statewide demographic survey of people with severe communication impairments. Augmentative and Alternative Communication, 6 (1), Goldbart, J., & Marshall, J. (2004). “Pushes and pulls” on the parents of children who use AAC. Augmentative and Alternative Communication, 20 (4),

35 References Hunt, P., Soto, G., Maier, J., Müller, E. & Goetz, L. (2002) Collaborative teaming to support students with augmentative communication needs in general education classrooms. Augmentative and Alternative Communication, 18, Johnson, J.M., Inglebret, E., Jones, C., & Jayanti, R. (2006) Perspectives of speech language pathologists regarding success versus abandonment of ACC. Augmentative and Alternative Communication, 22 (2), Kent-Walsh, J.E. & Light, J.C. (2003) General education teachers’ experiences with inclusion of students who use augmentative and alternative communication. Augmentative and Alternative Communication, 19 (2), Light, J. & Drager, K. (2007) AAC technologies for young children with complex communication needs: State of the science and future research directions. Augmentative and Alternative Communication, 23 (3), Lund, S.K., & Light, J. (2007). Long-term outcomes for individuals who use augmentative and alternative communication: Part III – contributing factors. Augmentative and Alternative Communication, 23 (4), Lund, S.K. & Light, J. (2006). Long-term outcomes for individuals who use augmentative and alternative communication: Part I – what is a “good” outcome? Augmentative and Alternative Communication, 22 (4), McNaughton, D., Rackensperger, T., Benedek-Wood, E., Krezman, C., Williams, M.B., Light, J. (2008) “A child needs to be given a chance to succeed”: Parents of individuals who use AAC describe the benefits and challenges of learning AAC technologies. Augmentative and Alternative Communication, 24 (1),

36 References Millar, D.C., Light, J.C. & Schlosser, R.W. (2006) The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language and Hearing Research, 49 (2), Pendergrass, M., & Vestal, J.C. (2002) Making the most of augmentative communication devices. The Case Manager, 13 (1), Romski, MA, Sevcik, R.A., Adamson, L.B., Cheslock, M., Smith, A., Barker, R.M., Bakeman, R. (2010) Randomized comparison of augmented and nonaugmented language interventions for toddlers with developmental delays and their parents. Journal of Speech, Language and Hearing Research, 53, SCOPE. (August 2007). Communication Aids Provision: Review of the Literature. Policy and Government Affairs. Retrieved ( ) from litreview07.pdf Speech Pathology Australia (2004). Augmentative and Alternative Communication-Position Paper. Melbourne, Victoria. Retrieved ( ) from Totten, L., & Ryder, S. (2009). Parental perspectives on the responsibilities of team members involved in supporting AAC devices for school aged children. Research findings presented at the 2009 More than Gadgets Conference, Perth, WA.


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