An overview of current augmentative and alternative communication trends, services and experiences

Posted in Personal Perspective on 7th Jul 2015

Page-20-1Current issues in AAC

AAC describes methods of communication used by individuals with communication difficulties that add to or replace spoken communication. These include communication boards and books (low technology) as well as electronic devices such as voice output communication aids (high technology).1

The proliferation of inexpensive mobile technologies has dramatically changed the landscape for individuals with communication difficulties, with the use of touch screen phones and tablet devices being readily adopted by these individuals, partly as they are cheaper and more universally available than traditional dedicated communication aids.2 These also enable digital, as opposed to face-to-face, communication e.g. e-mail, Skype and social networking. iPads are an example of a mainstream device now commonly used as a communication aid by children and adults, with many communication apps being developed and sold for minimal cost. The development of mainstream technologies is largely driven by the needs and preferences of the wider population, which rarely match the needs and skills of individuals with complex physical and communication needs.3 It is important to ensure that provision for individuals who require adaptations and specialist soft and hardware does not diminish.

Another field of development has been voice banking for individuals who are likely to lose their speech as a result of a progressive condition, which enables a person’s own voice to be stored for use later with their communication aid.4 The computer generated voices of high technology aids have been cited as critical factors in the acceptance and use of communication aids.5

Eye-gaze technology has been used by small numbers of severely disabled people to control bespoke communication aids for some time, but is now being developed as a more consumer friendly tool for mainstream devices, such as a laptop or Windows tablet. Recent developments have seen lower cost eye-gaze cameras, originally intended for gaming, being developed to work with lower cost tablets including iPads.

There has also been a growth in Brain-Computer Interface (BCI) research over the past 15 years, with one development being its use as a communication aid. BCI systems measure brain activity recorded from the scalp or cortical neurons which enable individuals to communicate through computers by controlling cursor movements or selecting letters.6 BCI does offer a new potentially life-changing method of communication for those with limited or no muscular movement, particularly with poor vision. However, technological development and larger-scale research is needed before it can be used reliably as a communication aid with any vulnerable client group. There are a number of practical issues that need to be explored before it is released to the larger population of individuals with communication difficulties e.g. technical support, training, ease of use of set up and reliability of response rates. Alongside technological changes, financial and political factors are influencing AAC provision. Historically, funding for and access to AAC provision and assessment has been problematic in the UK, with a history of poor provision and a postcode lottery for individuals with communication needs.7 However, from April 1st 2013, AAC was assigned under NHS Specialised Commissioning, commissioned directly by NHS England, with specialist AAC assessment, equipment, training and support having a dedicated, albeit finite funding budget, ensuring a more equitable service.8 A ‘hub and spoke’ service model was proposed with specialist centres (‘hubs’) providing assessment and provision for the 10% of individuals who require a specialised service, and local services (‘spokes’) to provide the remaining 90% requiring non-specialised AAC. Services are currently awaiting confirmation of hub designation status.

If specialised AAC services are to meet the NHS Outcomes Framework Domains, required by the new NHS specialised commissioning contract, of enhancing quality of life, ensuring individuals have a positive experience of care and protecting individuals from avoidable harm,9 we need to ensure that the services and AAC devices provided are evidence-based and person-centred.

Experiences of communication and interaction using a tablet to communicate

In June 2014 students from University College London underwent various ‘communication challenges’ as part of the Royal College of Speech and Language Therapist’s Giving Voice Campaign to raise awareness of services essential to people who have communication or swallowing difficulties. One student, Helen Currie, spent a week using a text-to-speech application on her tablet. This was her sole means of communication aside from typical non-vocal communication strategies such as facial expression, gesture, basic signing and body language. In what follows, Helen recounts her experience of a week with no speech.

Why I did it

As a Student Speech and Language Therapist (SLT) I had been learning about the implementation of assistive devices to support communication. Before starting my course I had worked as an assistant with many people with communication difficulties. Some used devices with great success but some abandoned them altogether. I wished to gain further insight into the use of such devices and discover why people may accept and/or abandon them.

What I found

My reactions to using the device surprised me and several key interactional issues became apparent:

  • I was a slow communicator

I found it difficult to get noticed, to initiate my turn in a conversation and to fight for my space to talk. The social environment in which I was interacting did not allow for minutes to go by without a response. People would often jump in to help out and guess what I wanted to say, or simply take the floor for them, as what I had to say was not worth the wait. This led to a sense of loss of control. Not only control of my end of the conversation, but with it, my ability to express my beliefs and negotiate my personhood within my social networks. I was now in the hands of those I interacted with, as maintenance of my interactional space was largely up to their patience.

  • My tablet stole my identity

The focus of my communication was the device, not me. People were looking at what I was typing, not at my face or body: much information about how I felt about something was therefore lost or not conveyed simultaneously with the message but at a delayed point. Similarly, as I was looking where I was typing, I was not able to see people’s faces and pick up on how they felt or their needs in the conversation and so could not react as I would have liked to. The subtleties of meaning conveyed through intonation, stress and pitch and idiosyncratic features such as my accent were lost to an electronic voice, its only similarity to mine was that it was female.

  • Communication became a chore

Communication breakdown was very common due to difficulty with the volume of the voice or the lack of intonation. I was constantly typing, repeating, and clarifying. It was exhausting. Therefore communication became frustrating and bothersome and I found myself avoiding circumstances in which I would bump into people to avoid the trouble of taking out my device. Further to this, I felt a certain stigma in taking out my device and drawing attention to my different way of communicating. Someone even told me they deliberately avoided me when I was using it.

Conclusion

My experience was not that of somebody who has genuine communication difficulties, which may warrant the introduction of an assistive device. However, the challenges I faced raised certain issues around interaction with assistive devices. These experiences resonate with published work by people with disabilities.10,11 Mainly, that the interaction is not about the equipment, it’s about the people. Provision of assistive technology is vital but is not a miracle solution to communication difficulties. This highlights the fact that simply supplying a device for communication does not solve ‘the problem’. Interactional advice could help people who use devices and their significant others to develop conversational patterns which are satisfactory to them. The full blog of the communication challenges can be found at: uclugivingvoiceblog.wordpress.com

References

  1. Communication Matters. Shining a Light on Augmentative and Alternative Communication. 2013; Edinburgh: Communication Matters.
  2. AAC-RERC – Rehabilitation Engineering Research Centre on Communication Enhancement. Mobile Devices and Communication Apps: An AAC-RERC White Paper; 2011: Nebraska, Lincoln: AAC-RERC.
  3. Beukelman D. (ed.) Presentation at the State of Science Conference for the RERC on Communication Enhancement. ‘AAC for the 21st Century: Framing the Future’. 2012; held June at Baltimore, MD.
  4. Euan Macdonald Centre. Giving voice to people living with MND: voice banking and the generation of personalised synthetic voices: Blog Post: 2014 http://www.euanmacdonaldcentre.com/giving-voice-to-people-living-with-mnd-voice-banking-and-the-generation-of-personalised-synthetic-voices/
  5. Baxter S, Enderby P, Evans P, and Judge S. Barriers and Facilitators to the use of High-Technology Augmentative and Alternative Communication Devices: A Systematic Review and Qualitative Synthesis. International Journal of Language and Communication Disorders 2012;47(2):115-29.
  6. Kubler A, Birbaumer N. Brain–computer interfaces and communication in paralysis: Extinction of goal directed thinking in completely paralysed patients? Clinical Neurophysiology 2008;119:2658-66.
  7. Office of the Communication Champion. Specialised AAC Provision: Commissioning National Services: 2011. London: Communication Council.
  8. NHS England. Draft Service Specifications for Specialised AAC Services [green/whitepaper]:2014: London: NHS England.
  9. Department of Health. The NHS Outcomes Framework 2013-2014: 2012. London: Department of Health.
  10. Robillard, A. Communication problems in the intensive care unit. Qualitative Sociology 1994;17(4):383-95.
  11. Robillard, A. Meaning of a disability – the lived experience of paralysis 1999. Philadelphia: Temple University Press.

ACNR 2015;15(2):20-21.   Online 6 /07/15

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