You MatterA course for parents and educational support staff to facilitate communication through AAC

Amanda Bousaki & Clare Latham

• What it is• How it came about• What it contains• How it was trialled• Some of the participants reactions• What has happened as a result of the

participants attending the course

Today we will discuss…

Today we will discuss…

• Off-the-shelf course• Designed to be run over two and a half days,

or 8 x two hour sessions• Empowers parents, families, and support staff• Supports their use of all forms of AAC• Trains them to facilitate communication

through AAC

What is it?

“Anecdotal and research evidence suggests that professionals may not fully understand the

perspectives of family lies of children who need or use alternative or augmentative

communication (AAC). This may impact on the provision of appropriate services.”

(Julie Marshall and Juliet Goldbart 2008)

How it came about

The local concerns- Insufficient support for parents and support staff- Isolation

Becta funding enabled the authors to: - Design a questionnaire.- Review the current literature- Work with a small focus group.- Design a course that addresses the highlighted concerns.- Pilot this course in three areas of Britain as part of the

larger “You Matter” project.

What is it?

• Powerpoint presentation with embedded video clips

• Detailed tutor guide• Detailed participants guide with case studies• All activities and support materials• All paperwork to run the course• Suggested paperwork to advertise the course

What it contains

• Concerns• Pressures• Hopes• Setting aims for the course

Session One

Role models

Facilitating Communication• Defining what we mean by

communication• How communication through

aided systems develops

Sessions Two and Three

Stage One Communicates•Likes•Dislikes•Wants

Give Examples

Stage Two Child uses a few words either spoken or aided or both

Give examples

Stage Three Links ideas using their aided communication, speech gesture or both

Give Examples

Stage Four •Attempts to speak about things not in the “here and now”•Asks, “Why”•Links ideas using “because”

Give examples

Stage Five •Adds specific details•Can make simple predictions•Questions to find out new information “How”•Learns alongside peers pro actively

Give examples

Facilitating Communication• How to select vocabulary at the

right level for a child

Sessions Two and Three

Core and fringe vocabulary

Core vocabulary Fringe vocabulary

• How participants communication affects the child’s progress

• How participants communication will change as the child gains skill

Session Four

• You use the system, don’t demand that they use their system

• Child led, not adult led• Waiting, not talking• Commenting not questioning

What YOU need to do

• “initially I was daunted but very glad I took part. I was able to reflect and actually see what I had achieved”

• “Viewing self was weird but amazing to see how I interacted”

• “In the feedback, the video was the biggest thing that was most valued –both watching and being videoed themselves”

Parent-child video session

Session Five • Review of video• Involving others

Sessions six and seven • Where to focus help• How to implement help• How to measure success• How to get support• How to set long term aims

Video

What shall we work on? More of the same?Move on?

I will check progress ...... Make a note of when

What did he/she do that surprised me?

What did I learn along the way

Putting my child and family at the centre

• Shall we use aided communication in the next year?• When will we use it?• How will we use it?• What will we use it for?• Who will ensure it is ready?• Who will see it is returned to its place?• Who will ensure it has the right vocabulary?• Who will model its use? • Who will use it with my child?

• Developing technical skills• Keeping in touch

Session Eight

Three pilot course• Milton Keynes• Northampton• Oxford

All had• A mix of parents and education staff• Between 10 and 16 participants• A mixture of AAC systems

How was it trialled?

• “Brilliant going on a course with parents to get their point of view and what they need from us”

• “Enjoyed listening to parents views and how they are effected by the challenges”

• “It has been a wonderful opportunity to meet with parents and carers to discuss communication at length”

• “To give children more of a voice, to initiate, instead of taking it away from them”

• “A new way of communicating, understanding what’s important and what's achievable”

Feedback: Education Staff

• “A very useful course. Meeting people in similar situations and getting the help and information we need to move forward with our child”

• “Fantastic to meet professionals who understand OUR problems”

• “I believe communication is as fundamental as walking ..... You should get the same support to learn to talk through AAC ... A very inspiring course”

• Brilliant – showed importance of setting up activity – having everything you need near by and time to do this – not asking to confirm too much etc. – learned lots.”

• ”Gaining an understanding of AAC and how I can begin to use it ... Fantastic to have guided sessions on actually making pages for us”

• “Initially I was daunted but very glad I took part, I was able toreflect and actually see what I had achieved.”

Feedback: Parents

• “The teaching assistants and parents were becoming a team”

• “Our parents were keen, hardworking, open to suggestions, and want the best for their children – we can all learn a lot together”

• “It was really good to have parents there because they brought so much to the table and I think TAs really benefited from hearing from them”

• “Videoing is such a powerful tool and really enables a person to stand back and watch what they are doing. It really facilitated reflective practice. I feel that they [parents] came up with relevant feedback without me needing to be too directive.”

Feedback: Tutors

• All pilots will run a follow-up• Leaders of the three courses will run them

again on a yearly basis• Setting up local branches of 1Voice• Leaders have noticed improved

communication on follow-up visits

Other benefits

Further details from www.ace-centre.org.uk

01865 759800

How to obtain the course

• Berry J 1987 “Strategies for Involving Parents in programs for young children using AAC “ Journal of Alternative and Augmentative Communication 1987

• Blischak D,LombardinoL, Alice D. “Use of Speech-Generating Devices; In support of natural Speech” 2003 Journal of Alternative and Augmentative Communication Vol 19 2003

• Bruno J Dribbon M 1998 “Outcomes in AAC; Evaluating the effectiveness of Parents Training Program” Journal of Alternative and Augmentative Communication 1998

• Cress C Marvin 2003 “Common questions about AAC services in Early Intervention " Journal of Alternative and Augmentative Communication Vol4 2003

• Grunland M Bjork-AkessonE Wilder J Ylven R 2008 “AAC Interventions for Children in a Family Environment Implementing Evidence Based Practice “ Journal of Alternative and Augmentative Communication Vol24 2008

• King G Batorowicz B ShepherdT 2008 “Expertise in research- informed clinical decision making; Working effectively with families of children with little or no functional speech” Review Informa UK2008

• Latham C Buckley K 2008 “LOOK2Talk” Ace Centre Advisory Trust Pub• Lund S Light J “Long-term 2007 “Outcomes for Individuals Who Use AAC Part3 – Contributing Factors” Journal of

Alternative and Augmentative Communication Vol 23 2007• Marshall J Goldbart J 2008 “Communication is Everything I think – parenting a child who needs AAC” International

Journal of Language and Communication Diorders 2008• Mc Naughton D RackenspergerT Benedex-Wood E. KrezmanC. WilliamsM, LightJ 2008 “A child needs to be given a

Chance” Parents of Individuals who use AAC Describe the Benefits and Challenges of Learning AAC Technologies Journal of Alternative and Augmentative Communication Vol24 2008

• PepperJ Weitzman E “It Takes Two To Talk” A Hanan Centre Publication2004• Stephenson J DorwickM2005 “Parents perspectives on the communication skills of their children with severe disabilities”

Journal of Intellectual and Developmental Disability June 2995

References