Published: 08 September 2022
Poorly matched communication aids limit children’s prospects
Communication aids can transform the lives of children who can’t speak or whose speech is difficult to understand. Around 1 in 200 children in the UK need this type of communication support to convey their thoughts, feelings and ideas, and to hold conversations. For these children, the aids used while their language and communication skills are still developing can have a life-long influence on educational achievement, mental health, overall wellbeing and life prospects. While most people take communication for granted, these young people must work hard to get across what they understand, know and want to say.
Augmentative and alternative communication (AAC) systems refer to a range of high- and low-tech aids used to support or replace natural speech that may be difficult to understand. AAC includes electronic symbol communication aids that use graphic symbols, letters or whole words to let someone say exactly what they want to say.
Choosing the best AAC aid is a complex process that involves professional assessments of children’s language, medical and physical characteristics, a child's motivation to communicate and the constraints of currently available aids. Final decisions and aid recommendations are made with input from the child, their family and ongoing service support to build effective learning and use of an aid.
Historically, despite AAC assessment processes and some services in place, up to half of all children’s aids were abandoned. The reasons are unclear but assumed to be related to aid suitability, insufficient understanding of a child’s needs or a lack of support to learn how to use the aid. With each aid costing up to £10,000, and inappropriate or no provision of an aid costing £500,000 per individual over their lifetime, the financial loss to the NHS is significant.
The impact for children and the cost of abandonment from poorly matched aids highlighted the need to address the lack of guidance around AAC assessment and decision-making. As a result, in 2016 the NIHR Health and Social Care Delivery Research (HSDR) Programme awarded funding of £720,000 to a team of AAC specialists at the Manchester Metropolitan University, the University of Leeds and Barnsley Assistive Technology Service to investigate the decision-making processes around symbol communication aids. Janice Murray, a speech and language therapist and Professor of Communication Disability at Manchester Metropolitan University, led the Identifying Appropriate Symbol Communication (I-ASC) project. She said:
“Identifying appropriate communication aids for children who use symbolic systems to communicate is complex and challenging. We want to further enhance quality of life outcomes for these children but need to ensure that the current process of decision making is as effective as it could be.” Professor Janice Murray, lead researcher for the I-ASC project
Supporting appropriate and consistent decision making
The I-ASC project focused on several areas of research which together formed a new body of evidence for current practice with new recommendations around AAC decision-making.
Beginning with a review of existing research on communication aid design, the team explored the characteristics of children who benefit from AAC. Through interviews and focus groups with specialist education and health service practitioners, family members and users of AAC aged 5 to 18 years, the team gathered views on the assessment process and recommendations for communication aids. Their views formed the basis of surveys for AAC practitioners.
“Our research showed that irrespective of diagnosis, children had very different experiences of communication aid assessment, including who was involved and how they came to their decisions.” Dr Yvonne Lynch, Assistant Professor in Speech and Language Pathology at Trinity College Dublin and member of the I-ASC research team
The AAC practitioners’ survey responses showed that a complex set of child characteristics, access features and aid attributes were important influencers in the decision-making process. The surveys’ results were published in BMJ Open and Augmentative and Alternative Communication.
The surveys also highlighted how families’ opinions and priorities often differed to those of professionals. For example, professionals felt that symbol layout and screen navigation, alongside vocabulary and language packages, were the most important elements when choosing an aid. By contrast, families reported that portability, voice, appearance and size were extremely important.
Findings from across the project were used to create the I-ASC decision-making guidance tool – the UK’s first evidence-based model of AAC decision making. The tool offers practitioners, families and children who use AAC access to free, bespoke resources to support the decision-making process. The I-ASC resources range from story books to explain and engage children in their AAC assessment process, through to information gathering logs and AAC aid trial plans. Used alongside practitioner assessments, the tool aims to make the process more consistent for all children and young people.
Promoting public involvement in disability research
From the outset, the team was supported by two public representatives – a young adult user of AAC and a parent of a young person who used AAC. Both representatives were involved in the study’s development, data collection, analysis and sharing of the results, ensuring the outcomes would be relevant to AAC users and their families.
Although public involvement is common in disability research, Professor Murray explained that I-ASC’s inclusion of the representatives as core team members was “unique in the severity of one individuals’ challenges, in terms of the length of time it would take for them to respond and communicate, and how we were able to readily accommodate that with a few insightful adjustments to interaction ground rules.”
I-ASC’s unique approach to public involvement attracted an additional award from the NIHR HSDR Programme to evaluate its impact across the project. Published in Qualitative Health Research, the team reported practical ways to support participation in research for people with complex speech and motor disorders. The team has since shared their approach in numerous settings, including a webinar for over 150 international attendees.
The I-ASC project’s much-needed guidance is now influencing practice and policy, with many AAC professionals having attended workshops and webinars about putting the I-ASC tool into practice. For example, the team worked alongside the charity Communication Matters to deliver a study day, and a webinar hosted by Call Scotland, which helps children and young people overcome disability and barriers to learning. The I-ASC tool is also included in numerous speech and language degree programmes, including Trinity College Dublin, University College London and Oslo University, Norway.
The I-ASC team is driving forward policy change through its involvement with the All-Party Parliamentary Group for Assistive Technology, where in 2018, the team outlined the potential impact of their findings on the way AAC services are organised and commissioned by NHS England. At that time, the Lead Commissioner for NHS England Rehabilitation and Disability Specialised services committed to using I-ASC’s new evidence to support their commissioning decisions. The cross-party discussion of the research is published on Policy Connect’s website.
In 2019, the Lead Health Commissioner for Greater Manchester Combined Authority issued a call for action after attending an I-ASC dissemination workshop that highlighted the variance in provision for children and young adults who do not meet specialised AAC service criteria.
Professor Murray’s expertise in the field has led to national and international roles and recognition, including a fellowship of the Royal College of Speech and Language Therapists for her inclusive research in AAC and enhancing the evidence base on decision making. She is also the chair of the AAC Committee for the International Association for Communication Sciences and Disorders. The I-ASC project, and specifically Professor Murray, were awarded a national AAC research award in 2019 by Communication Matters. The award recognised the project’s impact on service delivery and development – an impact that continues to improve the lives of many children who use AAC aids.
The study was funded by the NIHR Health and Social Care Delivery Research Programme.
More information about the study is available on the NIHR’s Funding & Awards website.
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