A Right to Speak Supporting Individuals who use Alternative and Augmentative Communication

The Background

Language is at the heart of all human existence. It establishes relationships, conveys information and is the medium through which most of human activity is performed². The ability to communicate is key to the individual's ability to be autonomous, and to be able to make choices and decisions without interference from others.³

Communication has an important role in contributing to a person's psychological health.⁴ People with motor neurone disease report loss of speech to be the worst aspect of the disease⁵. Loss of intimacy as a consequence of communication difficulties has been recognised as a contributory factor in carer-strain where a carer is caring for a person with communication difficulties.^4,6 For young children, the ability to produce spoken language is an important skill in the acquisition of literacy.⁷

Communication principally occurs through the spoken and written medium. In today's world the use of the written medium via short messaging service (SMS or texting), social networking, email and the world wide web is increasing. The written medium is often the communication of choice where previously spoken communication would have been used. For the individual with communication and/or physical difficulties, written communication can sometimes be the most practical mode of communication.

AAC refers to methods that augment or replace usual methods where an individual has no reliable means of communication. These methods are typically used by individuals with impaired communication. People who use AAC may include, for example, individuals who have communication difficulties from birth as a consequence of cerebral palsy, learning disabilities, autism and other difficulties, or people who have an acquired communication difficulty following stroke, dementia, motor neurone disease and other neurological conditions. AAC systems may also be used by people with temporary loss of communication - for example, within intensive care wards. AAC systems vary from high-tech dedicated computer equipment to adapted mainstream technology with specialist software or simple low-tech picture communication books. AAC has the potential to enhance the lives of many individuals with communication impairments.

Prevalence

In the United Kingdom, there is no specific prevalence data for people of all ages with communication difficulties who use AAC. RCSLT⁸ estimates that between 0.3% and 1.4% of the total population require the use of AAC systems although this is reported to be a conservative estimate.

Specific figures for children with AAC needs are not available either, although there is a range of recorded data that gives a flavour of what demand might be. Setting the Scene⁹ suggests there are nearly 45,000 young people with additional support needs in Scotland, while some 28,190 children between the ages of 5 and 17 receive Disability Living Allowance.

Additionally, the Support Needs System, administered by the Information Services Division: Scotland, records all children with health needs. National data is extrapolated from information provided by individual health boards but the system is not consistently applied. For example while there are an estimated 7,200 children with complex needs in Scotland, only 3321 are registered on the Support Needs System. The system collates data for children from 0 to 19 years. Figures for 2009 suggest that approximately 20,000 children in Scotland have communication needs, of which 4,000 have severe communication needs. Meanwhile the number of children with complex needs and severe disability is increasing because of increased survival of pre-term babies and increased survival after severe trauma or illness.¹⁰

Further guidance on estimated prevalence of AAC use in Scotland can be explored by examining prevalence data for conditions associated with AAC use. One Scottish study¹¹ exploring AAC training provided by speech and language therapists reports the most common conditions associated with AAC use in Scotland as cerebral palsy, motor neurone disease, stroke and multiple sclerosis. Prevalence rates for these specific conditions, and others associated with AAC use, are summarised in Appendix 2.

The use of a national register for people who use AAC has been considered and, while there would be benefits in such an entity, there are many methodological barriers to overcome ranging from the complex and individual nature of AAC to whether registration is voluntary or mandatory. Meanwhile a current UK study that includes examining prevalence of AAC is in progress and will be a key data source for future AAC commissioning (http://www.communicationmatters.org.uk).

Demand

Increasing demand is anticipated as a consequence of changing demographics, with an increase in survival of children with disabilities; improving mortality for adults with disabilities; and increasing numbers of people living with acquired long term conditions. In addition, developments in mainstream and specialist technology, and a greater awareness and acceptance of technology, also raise expectations.

Costs

Individual equipment ranges in cost from £30 to £18,000 (minimum and maximum cost of available technology at 2011 prices) and usually has a life span of around 5 years, requiring repair and replacement over the course of an individual's life (from pre-school to adult). AAC equipment is highly specialist, low volume and requires skilled support to be used effectively. While low-tech AAC equipment is generally low cost in terms of initial production costs it can be associated with higher costs over time as these systems are tailored to individual needs and require continual revision and reissue.

Current Service Provision

In some areas of Scotland, joint interagency budgets provide efficient access to AAC equipment. In other areas, services have used a targeted approach to develop the skills of the wider AAC workforce. However, evidence from service providers suggests that provision across Scotland is inconsistent and does not always meet the needs of people with communication difficulties, particularly those requiring high-tech devices. Examples include:

• school children facing long delays before equipment is available;
• school leavers having equipment breaking down and facing a year in work, at college or university unable to communicate before replacement equipment is purchased; and
• people with progressive illnesses dying before the equipment becomes available.

Some services regard assistive technology simply as referring to telecare. This has been described as 'remote or enhanced delivery of care services to people in their own home or in a community setting by means of telecommunications and computerised AAC systems'. In some cases an AAC device can be regarded as functioning as a telecare device - for example, where provision of an AAC device enables a person to reliably contact carers and thus reduce the input required via direct care services. AAC is generally not regarded as telecare but can be a useful tool in the provision of telecare.

Consequences

The cost of not providing adequate AAC services is high, particularly if education and employment opportunities are denied.

An individual who is quadriplegic can control his environment, make text or voice calls, engage in face-to-face conversations and get support from a carer, as well as shop or bank and communicate via the internet using available technology.

The potential cost savings in such a case, for an individual living alone at home, are demonstrated in the box below:

AAC provision/living at home
Total cost of AAC equipment £18,000*
Weekly Care costs 49 hours @ £14.20/hr £ 695.80
Total annual care costs: £ 39,181.60

No AAC provision/living at home
AAC Equipment costs £0
Weekly care costs 7x24 hours @ £14.20/hr £ 2385.60
Total annual care costs £ 124,046

Total Annual Saving with AAC provision £ 84,864.40

*maximum cost based on available technology today; the average lifespan of technology is 5 years so this could be a recurring cost every 5 years. Cost of AAC support not included.

The example above demonstrates a significant increase in care costs if AAC needs are not provided for.

Anecdotally, individuals who are unable to communicate basic needs and emotions are more likely to be admitted to hospital inappropriately and, when admitted, their stay is likely to be longer.

To be unable to communicate is to be excluded from many aspects of everyday life. For a child in school this may mean being unable to actively participate in many aspects of the curriculum. Getting It Right for Every Child¹³ (GIRFEC) is a national programme aimed at improving outcomes for all children in Scotland. GIRFEC has identified eight well-being indicators, as follows: nurtured; active; respected; responsible; included; safe; healthy; achieving. Where a service is unable to identify AAC needs for a child with communication difficulties or to support and make provision for these needs, it is failing to meet these quality indicators and consequently failing the child. It is difficult to see how any of the above indicators can be met if a child is unable to communicate.

The example below demonstrates how AAC has been used to support an individual to express views and integrate into a wider community.

Case 1

Jack is 53 and had a stroke 10 years ago which left him with a right- sided weakness and severe

expressive aphasia. As a result he has no useful speech and is unable to read or write. Jack has been known to SLT services since his stroke and communicated using gesture, vocalisation a communication book and, most recently, a specialist voice output communication aid. He attended his local day centre until about two years ago when he became depressed and sometimes had violent outbursts. At this point, he was re-referred to the multidisciplinary team for input from Psychology, Nursing and SLT.

The team worked with Jack to find out why he no longer wished to attend the day centre. Using Talking Mats, Jack indicated that he did not wish to be defined by his disability, and he was unhappy attending a 'day centre'. Other options to help Jack engage in activities in the community were therefore explored. During this time, the SLT working with Jack obtained a portable media device with a specialist application for Jack to try.

Jack took to this mainstream technology and is now managing well and is integrating into the community.

Failing to meet the needs of people who use AAC results in widening inequalities because of the difficulties accessing justice, healthcare and education. For a child with severe communication difficulties, the potential impact of lack of speech on development, learning and literacy is significant. Early intervention regarding AAC provision and support is crucial to reduce inequalities for the individual who needs to use AAC. Similarly, for adults who use AAC, the cost of being unable to maintain employment, train for employment or participate in education due to lack of adequate provision is widening inequality.

In summary, the costs of not providing AAC are far reaching, widely acknowledged but poorly described. The costs to individuals include restricted educational attainment and employment opportunities, increasing anxiety levels, increasing carer strain, and reduced quality of life. The costs to services include higher care costs, longer and more frequent hospital admissions and barriers to a good quality of life.