Transcript TITLE SUBTITLE - Communication Matters

On the road to VOCA with
young people who have
Down syndrome
Leela Baksi,
Consultant speech and language therapist,
Symbol UK Ltd
This paper includes material from parents of four young people who
use VOCA whom I have worked with for between 6 and 14
years:
 Tracey Howes
 Pauline Keating
 Debra Coote
 Fiona Corbin
Thank you to these parents and young people for their input and
support in developing this paper.
www.symboluk.co.uk
This paper takes a syndrome-specific approach, looking at issues
and recommendations on using and supporting VOCA with
people who have Down syndrome.
Down syndrome (Trisomy 21) is the commonest medical condition
with associated learning disability. The incidence of this
condition is 1:850 or 1:1000 and there are an estimated 16,000
school aged children with DS in the UK.
Speech, language and communication needs are an invariable
feature, with a specific profile of strengths and deficits, including
greater challenges with expressive syntax and issues with
speech intelligibility.
www.symboluk.co.uk
Murray-Branch and Gamradt, 1999, highlighted that the potential of
Assistive Technology including VOCA was under-used with
people with Down syndrome.
This paper supports the assertion that VOCA should be considered
as part of a package of intervention tailored to the syndrome
specific speech, language and communication impairments and
learning style associated with Down syndrome.
It offers insights into ways in which VOCA can be used effectively
with this population, drawing on clinical work with children and
young people with DS in tertiary level services, and exploring
four case studies of young people with Down syndrome with
severe speech production difficulties through parents’ short
accounts and comments on their sons’ journeys.
www.symboluk.co.uk
Firstly I set out recommendations from Murray Branch and
Gamradt regarding VOCA for people with Down syndrome. I am
not aware of any other reviewed-and-published literature on
VOCA specifically with this diagnostic group.
Next I present insights highlighted by parents from four parallel
single case studies of young people with DS who use, or are
starting to use, VOCA. I asked parents if they would like to
contribute ‘’ and these are presented with minimal editing to
enhance readability.
Finally I outline tentative recommendations on using VOCA with
this client group, drawing from the literature, what parents said,
and my clinical experience.
www.symboluk.co.uk
Murray-Branch and Gamradt 1999- reference details
Murray-Branch, J. and Gamradt, J.E. (1999). Assistive technology:
Strategies and tools for enhancing the communication skills of
children with Down syndrome. In J.F. Miller, M. Leddy and L.A.
Leavitt (Eds.), Improving the communication of people with
Down syndrome (pp. 161-204). Baltimore, MD: Paul H. Brookes
www.symboluk.co.uk
Murray-Branch and Gamradt 1999 outlined
personalisation of systems with this population
‘When investigating aided communication techniques for this purpose, the
intervention team must assess the child's ability to communicate in
many real-life situations.
 ...the types of things that the child must communicate within these
situations
 ...what the child is attempting to say
 ....the child's degree of success in attempts at expressing this info
(Brown, Shiraga, York, Zanella and Rogan 1984; Carlson 1981)’
‘The type of communication aid (high or low technology) is
determined based on many factors such as the need for a voice,
portability, and the number of required messages.’
www.symboluk.co.uk
Murray-Branch and Gamradt 1999 alluded to pushing
syntactic skills through VOCA layout
‘Displays on communication aids can help children present
complex thoughts by using a logical sequence of symbols...
within these displays, words are organized by their meaning or
function in a sentence.’
www.symboluk.co.uk
Murray-Branch and Gamradt 1999 described VOCA
achieving specific functions as part of a multimodal
approach
‘Jenny more regularly starts conversations and is successful in
getting her message across by using a combination of speech,
gestures, her communication book, and her calendar. Jenny is
beginning to use a high-technology communication aid.’
www.symboluk.co.uk
Down syndrome: a specific profile of strengths and
challenges documented over the past 30 years
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A specific profile of speech, language and communication skills
and impairments are associated with the syndrome, as well as
sensory and motor impairments (Roberts and Chapman 2008,
Rondal and Buckley 2003).
Difficulties with speech intelligibility are multifactorial in origin
(Chapman 1997).
The extent and severity of these is variable (Rondal and Buckley
2003), and the ‘natural history’ has not yet been mapped across
the population (Laws and Bishop 2004,).
With appropriate opportunities, supportive environments and a
comprehensive programme of speech and language therapy,
we generally expect people with DS to be successful at using
spoken language as a primary means of communication (see
Buckley 2001, Kumin 2004).
www.symboluk.co.uk
VOCA with a ‘sub set’ of people with DS
Higher support needs
Clinically, the young people discussed here faced greater levels of
challenge in some areas, compared to the majority of their age
peers with DS. This often included issues with motor
coordination and control affecting the whole body and/or speech
production.
 Higher levels of support- SLT and otherwise
The families of these young people have sought out and worked
services to ensure that they receive greater intensity of support
than is generally available through statutory services, including
robust management of medical and sensory issues, challenging
schools to further develop inclusive practice, and weekly
specialist speech and language therapy over many years.
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www.symboluk.co.uk
High level of support: SLT intervention
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The young people received sustained targeted intervention
where goals and strategies take into account the syndromespecific communication profile and learning style, in the context
of a Total Communication approach.
Comprehensive speech and language therapy intervention is
implemented to maximise speech production skills and to
develop language and communication (RCSLT SIG in DS,
forthcoming).
This is tailored to the individual’s current skills and zone of
proximal development (Nye, Fluck and Buckley 2001).
www.symboluk.co.uk
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The young people discussed here made slower and limited
progress with speech production, with a greater reliance on AAC
for expression than other young people with Down syndrome
receiving similar intervention.
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This motivated opening of discussion with families about use of
VOCA, and development of personalised communication
systems, along with lobbying for provision of hardware from
statutory services.
www.symboluk.co.uk
Jacob- a personalised system and long term
intervention with ambitious targets
‘Leela first suggested a communication device when Jacob was
about 9 years old. Jacob had limited verbal communication
although he understood a lot of speech and whilst he knew lots
of Makaton signs, his communication with Makaton was limited
to a few key signs. It was clear to Leela that Jacob needed
some other means of 'getting his message across.'
‘We trialled several different communication devices - some were
too small, others too basic - and settled for a Dynavox DV4
(thanks to Leela's input, funded by the LEA). The Dynavox DV4,
whilst quite heavy and cumbersome, is robust and has a range
of different levels that can be adapted to suit the person using it.’
www.symboluk.co.uk
Jacob- a personalised system and long term
intervention with ambitious targets
‘We agreed together how to programme the Dynavox to suit
Jacob's needs and over time Jacob learned how to work his way
around it and how to pick his favourite topics to talk about.’
‘We have had to adapt the programme over time as Jacob has
developed and to change things that didn't work or that Jacob
wasn't interested in. We have also been able to download
photos for some topics which works well for Jacob.’
www.symboluk.co.uk
Jacob- a personalised system and long term
intervention with ambitious targets
‘If I am honest, I was a little sceptical at first, being unsure whether
or not Jacob would learn how to navigate his way around it. My
experience of Leela over many years, however, is that she
always sets challenging targets, and that she is usually right!’
‘The Dynavox has given Jacob the means to choose what he wants
to tell us about and allows him to give his thoughts and feelings
on it. Quite apart from the fact that the Dynavox has given
Jacob's a greater means of getting is message across, he also
enjoys using it. We can play word and number games with it and
he has fun!’
www.symboluk.co.uk
Proactive approach from therapist
enables VOCA use
 It was clear to therapist that J needs
‘some other means’- may not be
clear to families,
 Parent initially sceptical about J’s
capacity to use-would it be too
challenging?
 High expectations from experienced
clinician are enabling.
 Support to secure hardware from
LEA is mentioned as part of
therapist’s role.
Features of J’s VOCA
 Trialled devices, none ideal,
selected best fit.
 System evolves over time reflecting
changes in J’s interests/content of
communication.
 Flexible use of symbols and photos.
 Jointly planned, programmed by J’s
mum (at times inconsistent with
received wisdom about
programming VOCAs).
 Enables self determination of topic,
expression of thoughts and feelings
(higher level functions than
achieved through sign)
 The box does more than
communication- we play games as
well
www.symboluk.co.uk
Nick- easy to use and multifunctionality
‘[Nick had an enjoyable and successful time in mainstream primary
school. As he got older, there was] very slow progress in speech
and communication [and] he showed increasing signs of
frustration, Leela advised us to obtain a communication aid; we
obtained the Dynavox about 4 years ago.
We were uncertain how Nick would cope and initially he just loved
to play so he could get use to it. As Nick was using the Voca
more, the rest of the family would find it highly amusing by what
he was saying and Nick loved the reaction that he received in
return. One of his favourite phrases (& still is!) is ‘Daddy go to
work!’ and then grins like a Cheshire cat. He says this phrase
very well too! As Nick’s confidence grew, the Voca was proving
very useful in telling others how Nick was feeling, what he was
doing, where he was going on holiday etc.’
www.symboluk.co.uk
Nick- easy to use and multifunctionality
‘However, the Dynavox was very heavy and cumbersome, so when
Nick left College at the age of 18, Leela explored the
possibilities of the ‘Ipad 2’ because of it’s versatility and
lightweight.
A big success!! Nick took it like a duck to water! He found his way
round the Ipad very quickly. Not only did he find it helped him
tell us how he was feeling (or what he did), but he also loves
watching ‘You Tube’ clicks of his favourite T.V. programme,
Eastenders and Disney songs. He seems to be able to
understand that he needs it for working and improving his
communication, but also obtaining fun from it too.
Nick went to Lourdes (with support) last year with the Catholic
Lourdes Pilgrimage. He took his Ipad which enabled him &
others to take lots of pictures & video clips, which gives him (&
us) immense joy to look back on.’
www.symboluk.co.uk
Introducing VOCA to N and family
 Family recognised slow progress
and frustration
 Advised by therapist to obtain
communication aid, family initially
uncertain
 N initially enjoyed ‘playing’ to get
used to it
 Initial ‘compromise’ option was too
cumbersome- changed for ipad
when available
How the ‘box’ extended opportunities
 N used amusing phrases that make
family laugh, says favourite phrase
too- extended verbal
communication, also feelings,
holiday places etc- beyond here and
now communication.
 Uses for fun- watching video clips,
taking video and photos.
 Also functions as simple device to
gather, use, review picture materials
about important events/activities.
www.symboluk.co.uk
Edward- VOCA builds on low tech
devices and ICT skills
‘His school speech therapist is now seriously looking at getting
Edward an iPad with an app that makes it operate in a similar
fashion to Jacob’s. As we’ve discussed, the issue with Edward
is that he’s a young man with quite good understanding of
what’s going on, but very poor articulation of speech so people
often assume he understands less than he actually does.
His communication book is great with new people, enabling him
quickly to convey information about his likes, dislikes, places he
goes, family and so on. But it is quite hard to update
(particularly, as we’ve found, given how reluctant Edward is to
change and amend things – a downside of him becoming very
attached to the book!) and also limited in what it can convey.
I’m optimistic that Edward would really benefit from computerbased communication aids. He likes using computers, loves his
iPod and Flip (digital video camera), and I think the sky is the
limit with new technology. ‘
www.symboluk.co.uk
Moving on to VOCA
 Refers to another young person with
DS who uses VOCA- impact of role
model VOCA users with DS.
 Communication book is limited in its
content, ease of updating- looking
for extended communication
potential of VOCA
Previous experience supports VOCA
 Draws attention to experience, skills
and enjoyment of using digital
technology- anticipates benefits,
does not mention uncertainties,
scepticism
www.symboluk.co.uk
Olly- insufficient awareness of
possibilities and benefits
‘My thought process was that he would be talking before he was
five and I thought that introducing Makaton was not going to be
beneficial as he would have to just learn to talk. I was very
ignorant as to how difficult he would find it and am so grateful
that with Symbol's help Makaton was used as it has been his
only way to communicate for a very long time.’
www.symboluk.co.uk
Olly- insufficient awareness of
possibilities and benefits
‘Now however, having had eleven years experience with a child
who finds talking a problem I am so grateful that technology has
caught up. Olly has no problem using any form of gadget and is
very competent on the ipad.
I have noticed a big improvement in his sentence structure since
using Proloquo2go and we have found some games etc on the
internet that he has to talk to and they answer back or mimic his
words, this is both vastly entertaining and very productive in
getting a few more "speech" sessions out of him, without him
realising that we are working.’
www.symboluk.co.uk
Olly- insufficient awareness of
possibilities and benefits
‘In an ideal world I wish we had started to use this programme
before but unfortunately we were totally unaware that it existed
and because it seems to be a new idea many of the professional
we deal with are unwilling or unable, due to financial constraints
to support its use outside the home environment.’
www.symboluk.co.uk
Thoughts about AAC and VOCA
 Didn’t anticipate trajectory of
emergence of speech.
 Initially felt that ‘he would have to
talk’ if Makaton sign wasn’t used.
 With support, O used sign which
has been ‘only way to communicate
for a long time’, grateful for
guidance
 Advances in technology offer new
opportunities. Comments on
competence at using gadgets, ipad.
 Comments on lack of /inability to
support from professionals, maybe
because new idea, financial
constraints.
 Wishes had started earlier
Benefits of using ipad
 VOCA has promoted use of some
sentences
 Ipad used for fun, motivating speech
practice as well.
www.symboluk.co.uk
Tentative recommendations on using
VOCA with people who have DS
This section includes recommendations based on the literature and
accounts reviewed above, as well as additional points based on
clinical experience which are presented in contrasting colour.
www.symboluk.co.uk
Using technology
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Build on skills at using other devices, that play to strengths in
visual processing and visual and kinaesthetic learning
Make the box do more than just VOCA: PDA (personal digital
assistant) with photos, calendars, video clips, speech practice
games etc.
System must be portable taking into account individual’s motor
challenges
Facilitate maximum involvement of user in maintenance and
ownership: charging, turning on and off etc.
Keep operational buttons minimal: go back, index page,
clear/backspace (not separate functions)
www.symboluk.co.uk
Identifying content
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Use personalised vocab rather than prestored programme- construct a
system that fills the gap in individual’s communicative competence.
Start with favourite/highly used items from communication charts etc.
‘Highest impact, greatest need’ (Janice Light).
Names of people and places are key items
Also favourite items and events- clothes for Louise, nosebleed,
sleepover and party for Nick, sports and sports actions for Jacob.
Have social messages and include wind ups-humorous comments. Non
verbal humour is slapstick- need support to take part in verbal humour.
‘Start with contexts that provide sustained opportunities for social
interaction’ (Janice Light)
www.symboluk.co.uk
Organising the system
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Set up a system that evolves without changing existing structure
i.e. lots of room for development.
Have an index page/top screen, Light et al use screen shots for
index, I have used colour coding.
Reduce navigational demands- without capping language
development (Janice Light)
Use dynamic screen but retain elements that stay the samelayout for motor access patterns, location of sentence starters,
go back button etc
Push thematic roles in organisation of vocabulary and devise
layouts that support sentence making: take into account
syntactic deficits and promote language development.
Focus on clause structure. Add ‘linking words’ page lateraddress phrase structure as secondary ‘icing on the cake’. This
parallels recommendations regarding SLT intervention for
spoken/signed language with this client group.
Add prestored vocab set later
www.symboluk.co.uk
No Visual Scene Displays?
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Visual scene displays play to active, exploratory learning style.
Characteristic learning style associated with DS: have a go
when I know I can do it. Motivated more by people than by
learning experiences.
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Incidence of sensory processing disorders with this populations:
making sense of complex visual info can be an (unnecessary)
additional demand.
www.symboluk.co.uk
Direct teaching
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Teaching alongside opportunities to ‘play’
Facilitated communication style teaching, where instructor give hand
over hand support, plays to learning style associated with DS- give full
support and gradually fade prompting
Teach to check speech display and to clear speech display as early
skills.
Teach use of repetition for emphasis e.g. wake up, wake up; I feel
excited excited, and also to repeat whole message. Simple strategies
can fulfil some functions that might otherwise required linguistic skills.
Set up routines to enable user to indicate vocab to add to the VOCA
www.symboluk.co.uk
Build awareness of potential for people
with DS
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When intelligibility issues impact on communicative competence
(in spite of sustained direct work on speech skills) but language
skills continue to progress, VOCA is strongly indicated.
Talk to families about the potential of VOCA early- maybe in
response to ‘what if’s?’
In the context of a Total Communication approach,
communication books, charts and VOCA can be ‘under
consideration’ for all clients with DS as a possible future optionneed to build confidence and awareness within DS community
Linking to awareness of interest and competence in using
technology generally amongst people with DS may help build
confidence in idea of using VOCA and other devices to support
communication
Role models who have DS and use VOCA may be important.
AAC specialists have a key role and links between the DS
www.symboluk.co.uk
community and AAC community may be vital.
Contact details
Leela Baksi
Speech and language therapist
Symbol UK Ltd
Newington Manor
Callaways Lane
Newington
Kent ME9 7LU
[email protected]
www.symboluk.co.uk