Giving a voice to alternative communicators

For the many people without clear natural speech, alternative communication tools can be vital and life-changing. At Manchester Met, Professor Janice Murray’s innovative research is changing the ways those tools are recommended and their users supported.

People without clear speech often use augmentative and alternative communication (AAC) to be better understood. AAC can also help users ensure their potential is recognised. As Professor Janice Murray explains, AAC is “any technology that can help someone whose own speech is really unintelligible. It can be for several reasons that they’re not able to articulate speech effectively. Other people often make assumptions about abilities because the individual can’t make themselves understood with speech.

“AAC includes a range of technologies. A pen and a piece of paper could be somebody’s aided communication system. It may be that the person can’t articulate speech but they can still write effectively. For kids who can’t read or spell, a low tech tool might be a set of picture cards. It’s organised in a way that it provides the young person with a substitute language - a substitute way of organising their sentence structure. Other options are high tech systems with a PC or tablet infrastructure and the same sort of symbols available in software packages. Some have voice output as well.”

AAC can help its users to have better access to education, employment and other opportunities. But, Janice told us, there are sometimes issues with the ways AAC is introduced and managed. A recommendation for the wrong AAC tool can be counterproductive. The timing for introduction of AAC is crucial. Those who support users of AAC, such as parents, may not recognise the potential of the tools available or feel that they are ‘giving up’ on natural speech by accepting them. Valuable AAC tools are gathering dust in storage as they fall out of use. Janice addresses these and many more issues in her research, which is innovative for involving people with severe communication challenges in designing and carrying out the research. She also plays an active role in policy development, and works with think tank Policy Connect to keep assistive technology on the political agenda.

From 2009-14, Janice was Chair of the national AAC charity, Communication Matters. Her work with the organisation contributed to the work of the government appointed Communication Champion. One outcome resulted in an NHS-funded specialised ‘hub’ and local ‘spoke’ model of AAC service provision across England. This helped to make AAC services less fractured, with people seen more quickly as a result. Greater Manchester has seen a local impact, with service developments in the pre-existing and internationally recognised ACE centre in Oldham, through their enhanced ‘hub’ provision and local ‘spoke’ support.

Exploring clinical decision-making for children who use AAC has been an important focus of Janice’s research. Janice recently led the NIHR-funded project, ‘Identifying Appropriate Symbol Communication aids for children who are non-speaking: enhancing clinical decision-making’ (I-ASC). This was a collaboration with colleagues at the Barnsley Assistive Technology Service and Leeds University. The research findings revealed that AAC decision-making is complex, yet an alarming number of decisions were based on incomplete information, suggesting one explanation why inappropriate tools were sometimes recommended to users. This could lead to users abandoning the tools and, in turn, not meeting their academic or life potential.

One output of the project that aims to reverse this trend is the new I-ASC website. The site offers a structured journey through the clinical decision-making process, without the need for decision-makers to hunt for the information they need.

Janice explains: “It’s a freely available resource to help people make better informed decisions about what AAC systems to recommend for a young person. We’ve put the whole gamut of decision making into one place.”

Public involvement (PI) and the voice of AAC users is not unique in disability research. However, Janice places her user contributors in an unusually central role:

“There’s been a long history, probably across a range of disability research where there’s a phrase that’s used, ‘nothing about me without me.’ From my point of view, I felt very strongly that I wanted significant public involvement in my most recent I-ASC project. Quite often, on medically-oriented research there is an advisory panel. You’re asked to come in maybe two or three times across the life of a project, to a committee meeting; you’re given some information about how the project has gone along and you’re asked for your opinion and your comment. Whereas in the project that I managed, right from the concept stage I approached two people to represent the stakeholders that we were going to be considering.

“I approached a young man who had used high-tech AAC all his life, but had also worked for an AAC company, carried out assessments and training and acted as a mentor for younger people learning to use the system. I also approached a parent of a young woman who was just about to go to university and used a high-tech communication aid.

“At the development stage of the bid we invited them to lead on the dissemination work package. They were also involved in the development of the materials we used to collect data. They also did some data collection interviews. Because of the speed of the AAC user’s communication, we tag-teamed him with another researcher. The other researcher responded initially to any follow up questions that arose. I also did some research methods training with these individuals. They were involved in the data analysis and they’ve also been involved in publications and presentations. And people have repeatedly been stunned when they see what they’ve been involved in and contributed.

“Public involvement is not new. I think where we have a uniqueness is in the severity of the individuals’ challenges, the length of time it would take for them to respond and communicate, and how we accommodated that.”

This has resulted in several invitations to share the I-ASC approach to public involvement; most recently a contribution to a webinar hosted by the Centre for Augmentative and Alternative Communication (University of Pretoria, South Africa), with over 150 international attendees:

Janice said: “We were delighted to be part of an event celebrating the creative, thoughtful and inclusive ways of including people with severe communication impairments in research.”

Alongside the IASC project, Janice was contracted to carry out a review by The Communication Trust, which supports young people with speech, language and communication needs. While many AAC users aspire to use text-based tools to communicate, their literacy levels can be much lower than would be expected for their learning ability. Janice identified rich areas for further research, including training and support for educators, and the particular literacy needs of children who use AAC.

AAC users can face specific challenges to taking part in the repetitive learning tasks associated with early literacy. For children using AAC, early learning experiences can’t be taken for granted - whether that’s a short piece of writing for school, or even a bedtime story.

“It takes these young people four times longer to produce a page of writing than their typically-developing peer. They’re just not getting the same practice. They’re not getting the same amount of exposure to becoming literate and curriculum moves on.

“If you think of early pre-literacy experiences, quite often that’s associated with bedtime storybook reading. It’s the last thing you do; you snuggle up, and you read the same story. A typically-developing kid will drive you bonkers because they’ll want the same book read to them forever. You’re not allowed to miss a page, you’re not allowed to miss a line, and they’ll stop you from doing it. Kids know how to teach themselves better than we do. They’re not letting you move on until they know they’ve got the story down pat.”

For children who use AAC, things are different.

“Getting them ready for bed will take twice, maybe four times as long. Having meals will take longer. So, by the time they get that little one into bed, it might not happen. If they are getting storybook exposure, they are not in charge in the same way as their typically-developing peers. Adults say ‘oh, let’s read a different book tonight’ and it’s because the adult’s bored, not the child. From that very early stage it’s about exposure to literacy. What educationalists need to understand is how much exposure, and when, and what kind of exposure they should get.”

Following her review for The Communication Trust and a literacy study at Manchester Met, Janice is planning an international literacy summer school at the University to begin in summer 2021.

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