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

The Future

Vision

Individuals who use augmentative and alternative communication (AAC) are included, free from discrimination, and live in an environment that recognises their needs and adapts accordingly.

Consultation with people who use AAC highlighted that, whilst provision of equipment and skilled support are identified areas of need, what is crucially important is that their needs are recognised by the wider community. This requires the wider community to have the skills to recognise the needs of people who use AAC and the ability to adapt to meet those needs. This latter aspiration resonates with equality legislation that requires public authorities to promote equity of opportunity in relation to age, disability, gender reassignment, pregnancy and maternity, race, religion and belief, sex and sexual orientation. It requires public authorities to have due regard to the need to eliminate unlawful discrimination, promote equality of opportunity and foster good relations.

Achieving the vision will mean a co-ordinated approach to ensuring equitable access to AAC equipment and services. In addition, there needs to be development of a population approach to AAC to ensure wider knowledge, understanding and communication skills.

Amongst the individuals who completed questionnaires, participated in a focus group and were interviewed individually were children, adults and carers across Scotland with mixed experiences of AAC. Key themes emerged from the consultation that are embedded into the strategic aims.

Strategic Aims

Strategic Aim

1. The communication needs of people who require to use AAC are universally recognised.

Individuals expressed a desire to live in a community where their needs are recognised and understood, a community that is familiar with AAC and understands how to interact with a person using AAC.

Strategic Aim

2. Individuals who require to use AAC have equal access to quality AAC services at a level commensurate with their needs at any point in their lives.

People who use AAC described a requirement to have timely access to specialist assessment by skilled staff who understand their needs and are knowledgeable about AAC. They described frustration at long delays and some confusion over which services they should be accessing. Specialist regional and national services are highly valued. However, there is no equity of access to these services as they are not always available to all individuals. People who use AAC also highlighted a requirement to have lifelong local access to specialist staff who are skilled in supporting their needs. Frustrations accessing AAC support from staff skilled in AAC were repeatedly highlighted. This was a particular issue during periods of transition -for example, from school to post-school where difficulties identifying appropriate adult services were described.

Strategic Aim

3. Individuals who require to use AAC are supplied with appropriate equipment in a timely manner.

A requirement is to have any equipment needs including provision, repair and replacement met without undue delay. This theme was repeatedly illustrated by reports from people who are life-long users of AAC but who currently have no reliable communication system. This is because their equipment is no longer repairable and they are relying on others to navigate several agencies and services in order to source a replacement device. The impact of this for one individual was being unable to communicate with parents via the telephone, while for another college studies could not be completed.

Strategic Aim

4. Services supporting people who use AAC contribute to developing a robust evidence base for the effectiveness and cost-effectiveness of AAC

In the current financial climate, more than ever, the field of AAC must be able to robustly demonstrate its effectiveness using summary measures and cost-effectiveness ratios. The availability of cost-effectiveness ratios would provide the necessary data to support the provision of AAC as an alternative to competing interventions for clients.

What needs to be done?

As summarised on pages 3 to 5, this document makes eight separate recommendations, with specific action points, to support achieving our ambitions for people who use AAC. These are described in further detail here.

Recommendation 1

AAC services to demonstrate the effectiveness of AAC interventions by promoting the implementation of AAC research on specific, targeted and universal AAC interventions.

Actions

1. National Services will lead on development of a National AAC Research Strategy with input from Regional Centres/Networks.

2. All AAC services will evaluate AAC related data from individual and population based intervention programmes.

AAC has the potential to enhance the lives of many individuals with severe communication impairments. There are numerous case studies, case series studies and personal stories reported in the literature that demonstrate the benefits of AAC to individuals. For example, one study¹⁴ reports on the experiences of eight adults, most with graduate degrees, two with Masters degrees and one with a doctorate, all of whom were in employment and using AAC. All participants in the study identified the importance of technology and AAC in supporting their continued employment. It is acknowledged that publication of cases where AAC is abandoned are less likely to be reported in the literature while in some studies an element of responder bias may over-report AAC use.

An evaluation of recent AAC studies examining the effectiveness of high-tech AAC is presented in the AAC Synthesis.¹⁵ In summary this paper cautiously concludes that there is evidence to support the benefits of AAC to different client groups. It also recognises that more rigorous methodological approaches are required in future studies.

This report identified a total of nine systematic reviews,^16-24 including a Cochrane review, via the Database of Abstracts for Reviews of Effects (Centre for Reviews and Dissemination, University of York, http://www.york.ac.uk/inst/crd/) as relevant to AAC. These are summarised in Appendix 3. In four of the reviews a range of speech and language therapy interventions that included AAC interventions were evaluated, while the remaining five reviews were more specifically evaluating aspects of AAC. The general trend from the reviews is that there is insufficient evidence to support interventions mainly due to poor study design, poor study description and limited sample size (many studies were single case studies). Evaluation of the reviews demonstrated wide inclusion criteria for many of the reviews resulting in heterogeneity between studies. Collectively, review conclusions tend to be suggestive rather than definitive.

One review¹⁶ suggests limited evidence of general carryover of AAC use. This may reflect the lack of understanding of AAC at a population level, where abandonment of AAC results from the levels of communication competency of the wider community experienced by the person who uses AAC. This is acknowledged within the report as an area of need highlighted by people who use AAC. It is also worth noting that measures of effectiveness of AAC tend to be dominated by direct or indirect observations on frequency of use or by rates of abandonment.²⁵ It is suggested that if effectiveness of AAC technology is based on observed frequency of use then this is likely to under-estimate the effectiveness and prevalence of AAC use.²⁵ This is because AAC tends to be used for communication repair where communication breakdown has occurred²⁶ and that it is the preference of unfamiliar listeners²⁷ while reporting of AAC use tends to be from familiar listeners such as carers and speech and language therapists. Despite the limitations of the evidence demonstrating the effectiveness of AAC and AAC interventions, the personal accounts within the literature provide powerful and compelling evidence to support the efficacy of AAC. Three single Scottish cases are presented below:

Case 2

Maggie is a 42-year-old woman with Motor Neurone Disease, diagnosed 2 years ago. She lives at home with her husband and two teenage children. Maggie's speech deteriorated rapidly following diagnosis and she was provided with a Lightwriter® communication aid and an alphabet chart. For some time she was able to use these as her main methods of communication but as she deteriorated physically she could no longer access the keyboard of the Lightwriter®. Maggie wanted to be able to continue to communicate with her friends. She also wanted to be able to read without relying on others to turn the pages for her. Maggie was provided with a Future Pad communication aid with The Grid 2 software. She is able to operate this with a single switch and use it as her main means of communication as well as to read e-books using kindle software, which is accessed through The Grid 2.

Lightwriter® a text based voice output communication aid
Futurepad, a portable tablet personal computer
The Grid2, specialist communication and computer access software
Forth Valley Health Board

Maggie's story demonstrates how, even with a deteriorating condition, AAC supports the individual to maintain autonomy and independence.

The following personal account by Barry demonstrates how he is able to have a degree of independence that would otherwise be difficult to achieve if he were not able to gain access to his current AAC system.

Case 3

Personal account by person who uses AAC

'I am a person who uses AAC because I have Cerebral Palsy which makes my speech hard to understand. I have been using different types of AAC for most of my life.

I used a low -tech AAC system called Bliss when I attended school. However after I left school I moved back home to Ayrshire and met my Speech and Language Therapist. Following an assessment, we agreed that a Lightwriter SL35 would be the most suitable communication aid for me. I liked it because it was small. Shortly after I got my Lightwriter, I started my course at Motherwell College. It felt good using the Lightwriter - it made a difference to me that people weren't standing over me reading what I was saying which is what happens when you use a low tech system. I used this SL35 Lightwriter for years and loved it.

In my early twenties my goal was to get my own home. Eventually I achieved my goal and moved into my own home - there were problems along the way over adaptations to the house and my mum had to stay with me for 3 months until all of that was sorted out. I also had some problems with local youths. This was not a nice time for me, my first experience of living alone. However, again, technology came to my aid and I was able to get help with my alert button and, most importantly, tell family and the police about what had happened using my Lightwriter®.

I gave a presentation about my life using my Lightwriter® SL35 at a conference. Attending the conference was a fantastic experience for me. It also was my first chance to see the new model of Lightwriter® - the SL40. I got the chance to try it for a few hours and what I loved about it was that I could send a text message for the very first time in my life to my mum. As well as being able to text, I thought it looked quite cool. I also realized that the improved word prediction system was really going to speed up my communication - this is obviously very important to me. The speech was also better as were a number of other features. I was in two minds about handing it back after I had a shot of the SL 40 and thought I might just run away with it I liked it so much!

I told my Speech & Language Therapist about the new Lightwriter®. Things went quiet for a while, but in February 2009 she came to visit me with a surprise package. She had applied for funding for the Lightwriter® SL40 and the funding request was successful. Here was my new Lightwriter® - the first thing I did was send my mum another text message! Mum was so happy because a couple of years ago after I had moved in to my new house she wanted to buy me a mobile phone but we realized I couldn't hold it. Mum feels it has given her peace of mind that I can now text to make contact with someone if I have a problem when I am out and about. This new Lightwriter® has really taken my independence and confidence up a level. Once when I was out alone in my power chair, I toppled over. I had no way of getting help - now with my Lightwriter® SL40 I could text someone to get me help.'

Barry Smith, Ayrshire
Lightwriter® a text based voice output communication aid

The case presented below is described from the perspective of Education staff:

Case 4

Ahmed is 17 years old. He is quadriplegic with severe limb deformities and no controllable movement in any of his limbs. He has no speech but can use eye pointing to communicate his needs which he does in a very determined fashion. When he started school he attended a special school. Further assessment showed that Ahmed was a cognitively able child with a significant physical impairment. He moved to another primary school where his physical needs could be catered for, and then continued his learning journey into Secondary School.

With significant dedicated input from the AAC Specialist, support staff, and support from Speech and Language Therapist services and SCTCI* he was given the opportunity to trial a number of AAC devices to determine the most suitable equipment - a Vanguard II. Ahmed accesses this machine with a reflective tracker placed on his forehead and reciprocal software in the device.

Ahmed is a very skilled AAC user. The Vanguard allows him to communicate with his family and his peers. It is programmed with his individual preferences and vocabulary which help him link home, his community and school with little difficulty. It has a range of additional functions such as texting, phone calls and environmental controls. Within school, the machine can access curricular programmes. However, the skills he has developed are transferable and he is able to access a desk top PC with the appropriate interface (head mouse) which allows full access to all curricular materials. He has achieved a great deal in course work and is completing Access 2 in English and Maths, Access 3 in Modern Studies and various units at Access 3 level in Digital Literacy.

Life without his device would be very different for Ahmed as his disability is a real barrier to initiating communication with others. He will require ongoing personal care and assistance. However the Vanguard allows him to initiate and lead in conversation, it provides a degree of independence where he can make choices, request help and take control of his life in a meaningful way.

* SCTCI: Scottish Centre for Technology for Communication Impaired, a national AAC assessment centre
Vangaurd™ II voice output communication aid
Glasgow City Education Authority

This case demonstrates quite clearly the positive outcomes achieved with the use of AAC equipment and support. Access to the curriculum would not be possible without it. The AAC equipment has supported Ahmed to achieve many of the well-being outcome indicators identified within GIRFEC,¹³ for example, 'developing a level of autonomy, appropriate to age and stage', 'meeting or exceeding appropriate levels of educational attainment' and 'receives additional support to overcome any disadvantages that may contribute to social exclusion' are but a few of the positive outcomes described above.

While positive outcomes following provision of AAC are clearly evident in the accounts presented above, what is not evident is the quantity and quality of AAC support from professional staff, support staff, carers and family, required to achieve these outcomes. It is also apparent that use of AAC is a personal preference and not always an identified goal for individuals. For a person whose route to AAC use has been a long circuitous one it is difficult to separate what elements of input have had a cumulative effect from those that are a consequence of appropriate intervention at the right time.

Demonstrating effectiveness is part of the Quality Strategy for Health.²⁸ Evidence for effectiveness of AAC and AAC interventions is limited and there is a need to strengthen the evidence base. There is therefore an urgent need for further well-designed research in the field of AAC.

Recommendation 2

National statistics on AAC to be gathered by relevant agencies to support future gathering of cost effectiveness data on AAC to ensure that AAC funding is sustained in the longer term.

Actions

1. All NHS based services to implement the use of nationally agreed data sets for AAC

2. All AAC services providers to implement the use of appropriate outcome measures for all clients who use AAC.

AAC services are competing with other health care technologies, education and social care services for scarce resources. Limited cost-effectiveness data is available regarding the provision of AAC and AAC interventions. Outcome measures can be used in combination with costs to develop summary measures such as cost-effectiveness ratios. The availability of such summary measures could support commissioners to direct resources towards AAC provision. Two economic evaluations related to AAC have been identified^29-30 and are evaluated in Appendix 4.

The use of standardised data collection within routine practice as well as the regular use of goal setting and outcome measures will support gathering further information on the effectiveness of AAC and AAC interventions. Focusing on outcome measures is integral to the quality strand of the Curriculum for Excellence.³¹ This requirement is echoed in the literature where AAC professionals have been urged to move towards 'documenting the efficacy of AAC services in terms of customer satisfaction, value, quality and cost'.³² Routine standardised data on AAC and AAC interventions as well as data from local outcome measures is not routinely available at present.

The Chief Health Professions Officer funded a project to develop a national Allied Health Professional minimum dataset and this work is underway. A minimum data set, that includes data such as referral source, demand and activity level has been compiled by the Information and Statistics Division in collaboration with the Allied Health Directors in Scotland under the direction of the National Implementation Group. This was followed by a further project which is a waiting times census which was completed in February 2012. The results of the project are due to be released in May 2012. In addition, the NHSScotland Data Recording Advisory Service supports and provides advice on data recording, using a nationally agreed Data Dictionary.

The Data Dictionary includes descriptive definitions useful for AAC. Local implementation of these data sets within data collection systems would facilitate the growth of a data source that nationally would be able to provide valuable information to support planning, provision and evaluation of outcomes for people who use AAC. Implementation of standardised data in combination with routine outcome measures would facilitate future AAC research and importantly enable services to be evaluated in terms of quality and cost.

Recommendation 3

All AAC service providers should develop and implement a population based approach to the provision of support for people who require to use AAC equipment and services, ensuring that needs are recognised and responded to appropriately within the wider community.

Action

1. National AAC services to lead on development of a national strategy to promote universal support for people who use AAC.

2. All AAC services to implement national strategies to promote universal support for people who use AAC.

As stated previously, intervention at the level of the individual only partly addresses the communication needs of people who use AAC. In addition to identifying individual need, people who use AAC identified that the wider community need to be aware of and able to adapt to their communicative requirements. Effective intervention for people who use AAC supports them to achieve their goals and is required to be both focussed on the individual and to be universal.

The Scottish Government has begun work on developing required competencies of the children's workforce by consulting on the Common Core of Skills, Knowledge & Understanding and Values.³³ This work has provided an opportunity to ensure that communication skills, including the ability to interact appropriately with people who use AAC, are recognised. Additionally, the Scottish Government, Equality Unit funds a project on inclusive communication. This project aims to remove barriers to active citizenship for people with communication support needs, including people who use AAC.

There is scope for more work in this area, particularly to support implementation of the Patient's Rights Act (2011).³⁴ This Act requires hospitals and healthcare services to improve communication with all patients. Local implementation of measures to meet the provisions of this legislation will encourage hospitals and other healthcare services to introduce appropriate training and access to resources for all of the healthcare workforce on communication skills, including communication support. Communication support refers to the strategies, techniques and equipment used to support people with communication difficulties, including AAC strategies, to facilitate successful communication. This might include training on strategies such as the use of Talking Mats®³⁵ or Communication Passports³⁶ and the development of a symbolised environment. An example of this is detailed in the box below:

Good Practice Example

'Talking Mats have been commissioned by Talking Points, Alzheimer's Scotland and Scotland's Colleges to train staff in the use of Talking Mats to support people with complex communication support needs.'

www.talkingmats.com
a Scottish Social Enterprise

Furthermore, there is scope for generic AAC strategies to become embedded within the training and skills of staff within social work and social care particularly to support the accurate assessment of needs through community care assessments and to access Self Directed Support.³⁷

An example of the application of a universal approach to supporting the needs of people who have communication difficulties and require to use AAC within an education setting is the Symbolised Schools Programme in Fife in the box below:

Fife Assessment Centre for Communication through Technology (FACCT)

This is a regional AAC centre that is funded by Health, Education and Social Services, staffed by a team from education and health, and provides services to adults and children. The service provides specialist assessment, support, training and a loan bank of equipment. To support building capacity within education staff the team developed the Symbolised Schools Project. This has been developed over five years and to date has implemented change in 110 schools. An award scheme for schools to support their transition towards a symbolised whole school environment has been implemented. To date, three schools have achieved a Gold award while 14 and 35 have achieved silver and bronze respectively.

A Bronze award indicates that a school has symbolised its environment in terms of routines, reminders and visual timetables in both classroom and public areas.

A Silver award includes curricular supports, e.g. supporting access to literacy and numeracy activities; self registration; and restorative practices.

A Gold award is for a school which implements all of the above; mentors other schools as a Centre of Excellence; and develops more specific symbol resources, e.g. symbolised Personal Learning Plans and joint marking scheme along with feeder secondary schools.

Participating schools have access to a data bank of shared resources available on the Fife Education Intranet service.

'We would not have achieved the transitions evident in the schools if we didn't have joint working across education and health within our service'

Principal Teacher/AAC Specialist
Fife Education Authority, NHS Fife and Fife Social Services

This good practice example demonstrates how inter-agency working has provided the capacity to support implementing a population approach to AAC. In Fife, the Symbolised Schools project has made a significant contribution to promoting a universal understanding of AAC across the children's workforce.

Meeting the needs of people who use AAC requires services to adopt the strategic aims set out previously in this guidance. This involves all agencies working collaboratively to ensure that specialist assessment, appropriate equipment and ongoing support is accessible locally and is appropriate to individual's needs.

It is therefore recommended that a strategic plan to support this recommendation is devised, led by national services with implementation at all levels across AAC services.