Thousands of people in the UK may be living without access to a powered communication aid that would enable them to have a voice, according to research.

The research, Shining a Light on Augmentative and Alternative Communication, by augmentative and alternative communication (ACC) charity Communication Matters, found that 316,000 people in the UK are benefiting or may benefit from AAC support. Of those, 31,600 could be using powered communication aids yet only around 9,000 are.

The findings, which found great variation in service provision across the UK, stem from research carried out by the University of Sheffield. It highlights there is little consistency in identifying, assessing and providing AAC devices and many local areas are failing to make effective provision.

Other findings in the report included:

• Service commissioning and funding arrangements are often inconsistent and sometimes dependent upon in-year savings from other budgets, making it difficult for services to plan strategically and ensure maintenance and replacement of communication aids are built into continuing care plans
• Although the majority of people who use AAC and their families and carers expressed frustration with all or some of the AAC service they received, many were nevertheless satisfied with AAC services
• There is little consistency in service provision across the UK with few services having the interdisciplinary skills and resources to meet the most complex AAC needs
• Less than 5% of the 92 AAC services surveyed reported joint service funding arrangements
• Joint commissioning is viewed as vitally important to improve the integration of services across health, education and care settings, and avoid disputes over responsibility for funding.

Katie Holmes, research manager for Communication Matters, says: “This research report is a wake-up call; it highlights growing need for AAC in the UK yet what is lagging behind is commissioning of services, funding arrangements and specialist expertise. It has confirmed what we knew anecdotally:  that there is a postcode lottery of support and provision for both children and adults who use AAC, with a particular dearth around support for adults.

“For those who use AAC, and their families, the biggest issue is the constant barriers they face around securing funding for much needed services and equipment. With advancing technology developments, professionals working with people who use AAC need continual specialist training and support. Too much of their time is currently spent battling for funding when it could be better used to support individuals and increase skills and confidence in the AAC field.”

Cathy Harris, chair of Communication Matters, added: “This research paints a concerning picture for children and adults who need AAC and their families. It shines a light on the real picture around AAC needs and the lack of provision available. Too often individuals are left without access to AAC systems and services. It is unacceptable that there is no consistent approach to ensure that every potential communication aid user has a voice.

“It is a human right to be empowered to communicate. If you are unable to walk, it is natural to expect access to a wheelchair so why are those who cannot talk denied access to a communication aid? Without AAC life for those with speech difficulties can be lonely, difficult and isolating. This is all compounded by the low levels of public recognition that exists in the UK.

“Communication Matters are calling for improvements in funding and provision of AAC devices alongside greater public awareness. We are working closely with the Department for Education, NHS England and our strategic partners in Wales, Scotland and Northern Ireland to influence the future commissioning of specialised AAC services in the UK.”