Increasing the communicative opportunities and skills of young people with multiple physical and sensory disabilities Hannahs at Ivybridge and Plymouth University Tamzin Gribble (SLT) Dr Ruth Firth (SLT) Dr Allegra Cattini Lauren Carroll September 2013

COMMUNICATION MATTERS…

The aim of the project How the project came about What we did Findings What next? Overview

How the project came about Trickier to access parents  piecemeal training & plenty of room for improvement! AAC introduced late A need to improve training for our care staff Plymouth University Research Awards prompted action!

It is the parent/carer who can hold the key to developing effective communication for a VOCA user, if they are provided with the appropriate support (You Matter Project; Bousaki, Lloyd-Cocks, Latham, and Moore, 2011).

Aims of the Project 1. To increase the amount of AAC use, particularly beyond the school/college day. 2. To investigate whether increased AAC use (particularly use of Voice Output Communication Aids) leads to improved cognitive abilities.

Providing You Matter training for the parents and care staff of young AAC users will result in increased VOCA use. As a result of increased communication and interaction using their VOCA the young people will show an increase in their cognitive abilities. Hypotheses

What did we do? Baseline Questionnaire for parents/carers IQ testing Data logging Intervention 2 day training for parents/carers Post measures Questionnaire for parents/carers IQ testing Data logging

Who was involved? 15 young people aged parents/carers completed Q’aire 1 3 parents + 9 carers attended training 4 parents + 8 carers completed Q’aire 2 (7 of whom received the training)

Questionnaire How often the VOCAs are used What VOCAs are used for Situations when VOCAs used most/least Who tends to initiate interactions Technical barriers to using VOCAs Other barriers to using VOCAs Suggestions as how to motivate VOCA users to use them more General comments

Cognitive Testing Teaching alternative communication has been shown to lead to cognitive advancement in other areas (Capirci, Cattani, Rossini and Volterra, 1998).

Leiter R Non-Verbal IQ Test (Age 2;0-20;11) Identification of embedded figures or designs within a complex stimulus. Figure Ground (The ‘Find It’ game)

Testing in progress!

Data Logging

The Training You Matter (Bousaki, Lloyd-Cocks, Latham, and Moore, 2011)... with a few adaptations

2 full day sessions Brings together carers/parents and professionals on an equal footing in order to provide practical and positive ways forward for the children’s AAC needs. Gives parents/carers the tools and the support needed to evaluate their child’s communication levels, set their own goals, solve their own difficulties and become active decision-makers in supporting their own child’s communication

What We Found Key findings from Questionnaire 1 Key findings from Questionnaire 2 - evaluation of training - comparison between training vs. no training Data logging to date Findings from cognitive testing

Questionnaire 1

What VOCA Is Used For and How Often ………….Talk about likes and dislikes ….....Indicate choices ……………Talk about feelings/emotions …………Ask a question ………………Give information ………………..General chat …..Ask for something …….Say hello ………Get someone’s attention Not usedUsed

Technical Barriers to VOCA Use (Strongly disagree (-3) to strongly agree (+3)) Barriers to UseMean Scores ParentsCare Staff Too big Too heavy Charging Too slow Content Reliability Set up time-2.44 Safety reasons Programming knowledge Set up knowledge

Technical Barriers to VOCA Use …………….....Too big … Too heavy …………….....Charging … Too slow ….....Content … Reliability … Set up time ….....Safety reasons …..Programming knowledge … Set up knowledge Non BarrierBarrier

Other Barriers to VOCA Use (Strongly disagree (-3) to strongly agree (+3)) ParentsCare Staff Other forms of communication preferred Lack of time Only relevant for school/college Not sure of all the VOCA can do Limited opportunities It’s frustrating Knows what AAC user wants without VOCA use It’s for use with unfamiliar people Practical reasons1-0.67

Other Barriers to VOCA Use Non BarrierBarrier …………..Other forms of communication preferred … Lack of time … Only relevant for school/college … Limited opportunities …………………………………………...Frustration ….Know what AAC user wants without it …………… For use with unfamiliar people ……………………..Practical reasons Not sure of all VOCA can do

Participants’ Comments More training wanted More quality time with AAC user Larger staff group with knowledge of AAC user Easier without access issues Frustrations re. hardware issues

One parent’s thoughts “ I feel guilty I do not use the communication aid with [name]. I recognise and appreciate it is important for him to express himself. I just about get through the day, feeding him, doing medicines etc...The aid is one more thing that stresses me...”

Questionnaire 2

Feedback re. You Matter Reports of increased understanding of: how difficult it is for the AAC user the AAC user’s level and next steps the importance of core vocab the need to wait and listen more

Feedback re. You Matter 71% of attendees stated that they had changed how they interact with VOCA users Comments ‘”I model more. I wait longer for responses.” ‘”I encourage her to communicate her answer to me using her VOCA more now rather than just guessing what I think she actually wants and am amazed at how often I guess wrong!!’ “I understand better now how using her VOCA gives her an independent voice. I am trying to use it more at home.”

What VOCA is Used For Most T2 Not usedUsed ……..……….Talk about likes and dislikes … Indicate choices ………………..Talk about feelings/emotions …………….…Ask a question ……………..…Give information …………..…...General chat ……………….Ask for something ………….….Say hello ………Get someone’s attention

Barriers to VOCA Use T2 (Strongly disagree (-3) to strongly agree (+3)) TrainingNo Training Other forms of communication preferred Lack of time Only relevant for school/college Not sure of all the VOCA can do Limited opportunities It’s frustrating Knows what AAC user wants without VOCA use It’s for use with unfamiliar people Practical reasons

Barriers to VOCA Use T2 ……Other forms of communication preferred … Lack of time … Only relevant for school/college … Limited opportunities ………………………………...Frustration ……………Know what AAC user wants without it …………… For use with unfamiliar people ………..Practical reasons ….....Not sure of all VOCA can do Non BarrierBarrier

Table of data logging to date

Cognitive assessment

Conclusions You Matter training was positively received + had positive outcome in terms of peoples’ views Further evidence is needed to determine whether this leads to a sustained increase in VOCA use. Those with largest increase in VOCA use have made most marked progress in cognitive scores but the link between this and training is uncertain.

More care staff training Reconsider training for parents + consider increasing focus on low tech Regular data logging Negotiate the introduction of ‘communication champions’ Consult the young people about their views Input into College module re communication What Now?

addresses