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.

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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.

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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 .

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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

    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).

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VOCA with a ‘sub set’ of people with DS

 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 support needs 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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High level of support: SLT intervention

   The young people received sustained targeted intervention where goals and strategies take into account the syndrome specific 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).

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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.  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.

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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 computer based 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.

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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.

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Using technology

     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

     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

       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 same layout 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 later address 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?

 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.

 Incidence of sensory processing disorders with this populations: making sense of complex visual info can be an (unnecessary) additional demand.

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Direct teaching

     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

      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 option need 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 community and AAC community may be vital.

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Contact details

Leela Baksi Speech and language therapist Symbol UK Ltd Newington Manor Callaways Lane Newington Kent ME9 7LU [email protected]

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