Augmentative and alternative communication: a report on provision for children and young people in England, September 2010

The Communication Champion, for children and young people aged 0-19 in England, was appointed by Government in response to the 2008 Bercow Report on services for children and young people with speech, language and communication needs (SLCN). The Government’s action plan, responding to the Bercow Report, set out that part of the role of the Communication Champion will be to review the effectiveness of augmentative and alternative communication provision in different areas of the country to identify good practice and inform the development of future initiatives to improve services.

Some disabled children and young people can only ‘speak’ to other people if they are provided with electronic communication aids, referred to as augmentative and alternative communication aids (AAC). These aids make use of whatever movements the child or young person can control, to make choices between pictures, symbols, words or letters that are in turn linked to a digitised or synthesised electronic voice.

Provision of such aids can make a great difference to the individual’s quality of life – to their relationships, learning and eventual earning power. Growing numbers of children and adults are in need of aids, as a result of medical advances that enable fragile and premature babies to survive, but with significant physical impairment.

The 2008 Bercow Report, reviewing services for children and young people with speech, language and communication needs, found that ‘children and young people who require AAC face a particular struggle to have their needs met under the current commissioning arrangements’. The review found no consistent or equitable system (locally, regionally or nationally) for ensuring that those who need communication aids receive them.

This report provides an update to these findings. It was commissioned by government from the Communication Champion, appointed in response to the Bercow Report, who was asked to review the effectiveness of AAC provision in different areas of the country, to identify good practice and inform the development of future initiatives to improve services.

The review has focused on high technology communication aids, rather than devices such as charts and communication books with pictures, symbols or photos, since it is in this ‘hi-tech’ area that learners experience the greatest difficulty in securing appropriate provision.

The report identifies much good practice in local areas. This includes detailed assessment, the opportunity to trial aids until the right match to needs can be found, adaptations to fit the aid to a wheelchair and/or to integrate it with environmental control systems, ongoing training for users, the adults they live with and the adults who work with them at school and in other settings, rapid technical help if the aid ceases to function, and regular review to check that goals are being met and defined outcomes achieved.

To fulfil these functions, the effective PCTs and local authorities visited provide local multi-agency specialist teams, supported by regional centres of excellence. They identify a budget for communication aids and allied services, plan multi-level training for the children’s workforce, and attend to the issues that can arise at the transition between child and adult services.

Many local areas, however, fail to make effective provision. One in five of the areas visited lacks local specialist expertise, and many are struggling to fund AAC. Data from AAC suppliers also indicates that the estimated level of need is not being met. Whilst NHS guidance indicates that aids and services should be commissioned regionally, only one of ten specialised regional commissioning teams is fulfilling this commissioning function.

The new NHS White Paper ‘Equity and Excellence: Liberating the NHS’ has the potential to provide a solution to these problems. It makes clear that the proposed NHS Commissioning Board will commission national specialised services and regional specialised services set out in the Specialised Services National Definitions Set, which currently include AAC.

The report recommends that:

• 
  government ask the new NHS Commissioning Board, once established, to take forward the commissioning of regional AAC ‘hubs’ as a matter of urgency;
  
• 
  government consider commissioning regional AAC hub services on an all-age basis, that also includes the full range of high technology assistive technology as well as communication aids;
  
• 
  government ask NICE to review and if appropriate adopt quality standards for AAC which are currently being prepared;
  
• 
  quality standards include better signposting of services for individuals, parents and professionals working with children and adults who would benefit from AAC;
  
• 
  government grants to providers of AAC services are maintained until the end of March 2012, as originally planned in the Better Communication Action Plan, or until such time as the NHS Commissioning Board has completed the process of commissioning regional hub AAC services, whichever is the earlier;
  
• 
  commissioning tools for speech, language and communication needs, currently being developed within the Better Communication Action Plan Pathfinder programme, should include a description of how the local need for a ‘spoke’ AAC service should be assessed, what an effective service should look like (based on the quality standards that are in preparation), and how its impact could be measured;
  
• 
  government work with Communication Matters to develop outcome measures that effectively capture the impact of AAC on users’ quality of life and social participation;
  
• 
  the special educational needs and disability review being undertaken by government considers changes to the current Statementing system so that Statements (or any mechanism that replaces them) specify the levels of competence in AAC required by teachers and teaching assistants in regular contact with the child.
  

The annual cost of providing communication aids to every child or young person in England who needs one is in the order of £6.5 million, but benefits, in terms of an increase in the numbers of economically productive adults, can be large. If even one in ten children provided with aids and associated services were as a result able to enter permanent employment, this would realise estimated benefits of £310m to the economy over those individuals’ working lives.

Jean Gross

Communication Champion

September 2010

Introduction 1

Definitions, scope of report and sources of evidence 6

Current commissioning arrangements 13

Local provision 22

The communication aids market 45

Evidence of good practice 50

Features of a quality system 58

Conclusions and recommendations 59

Estimated costs and benefits 87

Appendix A - Case studies

Appendix B - Regional AAC services currently available

1. 
   Some disabled children and young people can only ‘speak’ to other people if they are provided with electronic communication aids. These aids make use of whatever movements the child or young person can control, to make choices between pictures, symbols, words or letters that are in turn linked to a digitised or synthesised electronic voice.
   
2. 
   Provision of such aids, along with the necessary training and aftercare, can make a great difference to the individual’s quality of life – to their relationships, learning and eventual earning power. Growing numbers of children and adults are in need of aids, as a result of medical advances that enable fragile and premature babies to survive but with significant physical impairment. Recent research in one local area, for example, shows that numbers of young people aged 15-19 with severe or complex needs increased by 70% over the decade 1998-2008.¹
   
3. 
   The 2008 Bercow Report, reviewing services for children and young people with speech, language and communication needs, found that ‘children and young people who require augmentative and alternative communication aids (AAC) face a particular struggle to have their needs met under the current commissioning arrangements’. The review found no consistent system (locally, regionally or nationally) for ensuring that those who need communication aids receive them. There was also no consistent or equitable system for ensuring that children and young people, or the adults who live and work with them, receive the ongoing support required if aids are to be useful. International research has indicated that nearly one third of all AAC equipment is abandoned if there is inadequate expertise to assess and identify the right equipment, or insufficient support available in its use².
   
4. 
   This report provides an update to the findings of the Bercow Review. It was commissioned by government from the Communication Champion³, whose programme of work on appointment included reviewing the effectiveness of AAC provision in different areas of the country, to identify good practice and inform the development of future initiatives to improve services. Her review has been supported by the AAC coordinator⁴, appointed to coordinate development work in the sector.
   
5. 
   The report assesses the current state of play in England on the provision of communication aids and allied services. It notes the problems that continue to beset many users and their families. It also draws out the features of effective practice, based on examples from local areas. It then makes recommendations for the future, along with an estimate of costs and potential benefits.
   

6. 
   AAC⁵ describes methods of communication which can be used by children, or adults, who find communication difficult because they have little or no clear speech. It adds to (augments) or replaces (is an alternative for) spoken communication. AAC can also help the user’s understanding, as well as provide a means of expression.
   
7. 
   There are two main types of AAC: unaided or aided. Most people who use AAC combine both methods. Unaided communication does not require additional equipment. People use many unaided methods to communicate; for example, body language, pointing, eye pointing, facial expressions, vocalisations, gestures. Some people use different types of signing. Aided communication requires additional equipment, ranging from simple picture materials to a computer or special communication device.
   
8. 
   Aided methods may be low technology or high technology. Low technology devices include anything which is not powered; for example, everyday objects, charts and communication books with pictures, symbols or photos, alphabet charts and pen and paper. High technology devices are devices requiring at least a battery to operate. High-technology communication systems range from simple (e.g. single message devices, Bigmack, Go Talk pointer boards, toys or books which speak when touched) to very sophisticated systems (e.g. specialised computers and programs, electronic aids which speak and/or print).
   

9. 
   Some children and young people may use alternative devices to control their aided AAC system, such as a switch, light pointer or a device to control an on-screen pointer. People who normally use a high technology device will usually have a low technology communication system in place. For example, a speech output device is suitable for using over the telephone, or in normal conversation. A paper-based communication system would be more appropriate for a private conversation, in a noisy place, or where a high technology device is inappropriate, for example at a swimming pool or perhaps when travelling, or in those instances where the technology breaks down. Increasingly, communication aids and computer technology can be integrated with other equipment, such as mounting systems, specialist seating and environmental controls
   
10. 
    This report is about high technology (hi-tech) communication aids. Whilst there is much to be learned from good local practice in the use of signs, symbols and paper-based communication systems, these do not carry the high costs of hi-tech AAC (which can be up to as much as £15,000 per aid) and have not therefore been subject to the same kind of local debate about which agency should fund the provision that has characterised the hi-tech field, and left many children and young people without a voice.
    
11. 
    In accordance with the brief of the Communication Champion, this report is about services for children and young people, aged 0-19, in England. It does, however, consider issues about the transition to adulthood for people who use AAC. In its recommendations it considers the case for commissioning some elements of AAC services on an all-age basis.
    
12. 
    This report is based on;
    

• 
  A telephone survey of NHS specialised regional commissioners carried out in January and February 2010 by BECTA on behalf of the Communication Champion and the AAC coordinator.
  
• 
  Data provided by specialist AAC services in England at the request of the AAC coordinator and the Communication Champion
  
• 
  Visits to a sample of 37 out of the 152 Children’s Trusts, carried out by the Communication Champion as part of an ongoing programme
  
• 
  Information provided by suppliers of communication aids
  
• 
  User views from members of 1Voice, a network of support and information for children who use communication aids, and their families
  
• 
  Information provided by Communication Matters, the UK Chapter of ISAAC (International Society for Augmentative and Alternative Communication), which is a Non Governmental Organisation with Special Consultative Status with the Economic and Social Council of the United Nations
  
• 
  Information from surveys of users and professionals carried out by Scope in 2007 and 2008
  
• 
  Information from the 2009 report of the Scottish Government short life working party, established to scope AAC provision, including an AAC care pathway and associated quality indicators
  
• 
  Work undertaken by the AAC Coordinator and AAC subgroup of the Communication Council⁶ to identify the characteristics of quality AAC national and local systems.
  

13. 
    In theory, communication aids fall into the scope of current NHS specialised regional commissioning arrangements, forming part of the ‘Specialised Services National Definitions Set’⁷.
    
14. 
    There are currently ten regional Specialised Health Commissioning Groups operating in England. These are overseen by the National Specialised Health Commissioning Group, which was established by the Department of Health. Specialised services are defined in UK legislation as those services that require a planning population catchment area of more than a million people and are listed within the Specialised Services National Definition Set (SSNDS), details of which can be found at: http://www.specialisedservices.nhs.uk/index.php/key-documents/specialised-services-national-definitions-set/
    
15. 
    Included within this set is SSNDS 5: “Assessment and provision of equipment for people with complex physical disability (all ages)”, which has the following sub-sets:
    

• 
  Amputee and limb deficiency services (including prosthetics) and complex orthotics services
  
• 
  Specialised wheelchair provision services
  
• 
  Environmental control services and other electronic assistive technology services
  
• 
  Specialised telecare services
  
• 
  Communication aid services
  

16. 
    Specifically, the communication aid services are defined as including “expert assessment, followed by demonstration, trial and provision of appropriate electronic and non-electronic communication devices, i.e. augmentative and alternative communication systems (AAC), user training, equipment maintenance, on-going support and periodic review.” (4.3, SSNDS Definition No. 5, page 5)
    
17. 
    In January and February 2010, telephone interviews with regional specialised health commissioners were conducted by BECTA, on behalf of the Communication Champion and AAC Coordinator, to seek information on commissioning arrangements for communication aid services. The telephone interview followed a script of questions, which explained the context of the interview within the ‘Better Communication Action Plan’ as follows:
    

18. 
    Of the ten regional specialised health commissioning groups interviewed, nine responded with information. Only four of the nine groups commissioned communication aid services on behalf of their PCTs. One of these provided assessment and loan bank services only, but required their PCTs to purchase devices. The second provided adult-only assessment services and equipment provision but on a pilot basis, and its future is dependent on the evaluation of this pilot. The third commissioned on behalf of two of its nine PCTs but was anticipating that this responsibility would be passed back to the two PCTs as the existing arrangement is historical. The fourth commissioned a communication aid and environmental control service on behalf of its 17 PCTs.
    
19. 
    Of the five responding regional specialised health commissioning groups who did not commission communication aid services, none had any plans to commission communication aid services as defined in the National Definition Set 5 in the near future, although one made reference to the possibility of addressing this in five to seven years’ time. Explanations for this included the relatively short time since the establishment of the regional specialised health commissioning groups, and the pressure of other priority services, such as HIV and bone marrow transplant services.
    
20. 
    In summary, of the nine regional specialised health commissioning groups who responded, only one – the West Midlands - was commissioning services for children and young people that included assessment and equipment provision as defined in the National Definition Set 5. Information from visits to local areas suggests that the tenth region also has no shared specialised health commissioning arrangements for AAC.
    
21. 
    This situation contrasts sharply with that for environmental control systems, where there are well established regional funding arrangements for the provision of aids and allied services.
    

22. 
    Visits to 37 local authority/Primary Care Trust areas in the course of preparing this report revealed a very variable situation. There was much good practice, described in the next section. Where practice was less good, children and parents experienced difficulties because of disputes over funding, lack of local expertise or equipment, and/or lack of training for users and professionals.
    
23. 
    At their best, local partners (PCTs, local authority children’s services and in some cases adult social care services) have aligned or pooled budgets for equipment and allied services. This is not, however, the general picture. In 27% of local areas visited, funding is not being allocated by any statutory agency, and in the majority responsibility remains unclear, with ad-hoc arrangements that are dependent on individuals’ decisions rather than codified in policy.
    
24. 
    Speech, language and communication is an area where children often fall down the metaphorical cracks between two systems (health and children’s services). Children need to communicate at home, at school and in the community, so agencies often dispute their ‘share’ of the costs. There is a lack of clarity about who is responsible.
    

25. 
    One in five (22%) of the areas visited did not have in their area a speech and language therapist with specialist expertise in AAC, or had a specialist but without sufficient time allocated to assess and support AAC users.
    
26. 
    Where a specialist speech and language therapist existed, the post had in one instance been under threat because of local need for efficiency savings, and was felt likely to be under threat next year in several other speech and language therapy services.
    
27. 
    Most of the areas visited accessed specialist multi-professional assessment and advice from centres such as ACE Centre North Oldham, Ace Centre Advisory Trust Oxford, PCAS in Bristol, the Wolfson Centre in Great Ormond Street Hospital, the Assistive Communication service in Charing Cross Hospital, the West Midlands regional Access to Communication and Technology Centre. A small minority of local areas had service level agreements with a specialist centre. Others purchased services on an ad hoc basis.
    
28. 
    Five of the areas visited reported that they were self-sufficient, with a local specialist team of speech and language and occupational therapists and technician support (although rarely a teacher).
    

29. 
    27% of the speech and language therapy managers interviewed reported problems with securing funding for aids, once an assessment had recommended that one be supplied. In these areas, multiple applications to charities often had to be made by professionals, or parents had to fund-raise to buy an aid themselves.
    
30. 
    One speech and language therapist described a young girl she works with, who has no speech but otherwise age-appropriate cognitive abilities. ‘It is always a battle between education and health over who will fund communication aids, so we are having to look at other ways of supporting this child. Her mother works for x betting firm, who are helping us with fundraising for an aid.’
    
31. 
    ‘Two children from x special school have recently had their hi- tech aids funded from various charities. There is no warranty cover when purchased through charities. Three AAC devices in the special school have recently broken down and there is no money for repairs. One parent funded the enormous price of repairs on her credit card and was still paying this back when it broke down again. The parent is still paying the original amount back but her child has no hi-tech aid’ ⁸
    
32. 
    Suppliers and therapists spoke of having to spend 100-150 hours applying to charities and other sources for funding for aids. Some found other solutions: ‘There are huge problems here in getting aids funded. We have no budget. The last one was agreed three years ago. So we are having to try to sell an old aid on e-Bay to fund a replacement’.
    
33. 
    Where aids were supplied by statutory agencies, they were joint-funded by the PCT and the local authority in just under half of local areas, solely by the local authority in a quarter of areas, and solely by the PCT in just over a quarter of areas.
    
34. 
    It was more common for money to be ‘found’ to buy aids on a case-by-case basis than for there to be an established budget. Where there was a budget, it ranged from £25,000 p.a. to £180,000 p.a., sometimes covering adults as well as children and sometimes covering the full range of assistive technology rather than just communication aids.
    

35. 
    Several respondents reported that although money had always been found for aids when requested, they felt that there were many more children who could benefit from aids than the numbers actually receiving them. Under-identification of need due to lack of awareness in the children’s workforce, or the priority given to communication in special schools, was the reason given.
    
36. 
    These reports of under-identification are borne out by comparison of what we know about the prevalence of the conditions that give rise to a need for AAC, and the numbers of children receiving hi-tech aids. Extrapolation of existing data on identified need and expenditure suggests a prevalence of 0.05% of children and young people needing high technology AAC, representing an estimated 6,200 children and young people in England.
    
37. 
    Detailed data from Norfolk, which has a comprehensive and well-regarded local AAC service, suggests a prevalence of 0.054%. However, another PCT/local authority with a 0-19 population of some 42,000 reported only six children using hi-tech communication aids, whereas a prevalence of 0.05% would represent 21 children. Another reported two users amongst a child population of some 70,000, whereas a prevalence of 0.05% would represent 35 children. The low prevalence of AAC means that it is possible that these figures are appropriate, but they do suggest some under-identification.
    

38. 
    Another issue reported was lack of integration of communication aids and other community equipment services. One supplier of communication aids noted that “We had a child who had to choose between talking and walking because the batteries he was given wouldn’t support both”.
    
39. 
    Where a child has been provided with an aid, issues often arise at transition to adulthood. One young person, for example, left school with a communication aid that later broke down. The rules required that he go through a speech and language therapist in order to apply to specialist regional commissioners for technical help and support, or a new aid. He did not have a therapist, and was therefore left without a voice until referral routes could be sorted out. One respondent to Scope’s 2008 ⁹survey of professionals reported: ‘I have had experience recently where I was supporting a young adult whose aid was funded by children’s services. When his aid needed replacing (as it wore out) he was over 18 so children’s services would not fund a replacement. I asked health and I asked social services but no-one would fund it.’ Similar issues arise where equipment belongs to a school and a pupil using the equipment moves to another school or area.
    
40. 
    A further area where problems arise for users is lack of training for the professionals who support their child. Speech and language therapists, for example, whose advice is central to appropriate provision of AAC, typically receive 6-10 hours of relevant training (for adults and children) in their four-year degree course. One training provider with particular expertise and interest provides 30 hours.
    
41. 
    Some professionals lack even a basic awareness of what AAC is and what it does. This can be a particular issue at secondary school, where the AAC user engages with a larger number of teachers. One parent emphasises the need “to get teachers to take the small amount of time required to get to grips with the technology, such that it can help the child to access the curriculum and enhance their achievements”. One secondary pupil with cerebral palsy, for example, described how one of her teachers took her communication aid away from her to play with it, apparently not understanding that the aid was not some technological toy, but her sole means of communication.
    
42. 
    Lack of skilled professional time dedicated to teaching the child or young person how to use AAC is another problem faced by users and their families. The skills involved in using hi-tech aids have to be developed slowly, over time, beginning with simple devices and then moving on to more complex systems. Yet Murphy et al (1996) identified that a person learning to use an AAC device receives an average of only 40 hours of therapy per year. In comparison, it is estimated that in order to learn English as a foreign language to the level of holding a basic conversation, approximately 200 hours of input is required.¹⁰
    
43. 
    In the words of one parent: ‘It takes weeks, months, even years to master everything about a communication aid when children are learning new things in literacy, numeracy and so on. It’s not about a single point in time, a single assessment – it is ongoing’.
    
44. 
    The case study below and those in Appendix A to this report illustrate the impact of these issues on children and families.
    

Sam Sam has severe verbal dyspraxia (i.e. difficulty in making and co-coordinating the precise movements required for the production of clear speech). He was referred to the local Speech and Language Therapy Service when he was two years old. Sam’s mother says: ‘I felt he understood what was being said as well as my other children had done at his age, but he just didn’t seem to want to speak and any words that he did use were very difficult to make out. I was worried about the assessment as I knew Sam would not really want to do anything.’ Sam was reluctant to participate at the assessment and in the therapy sessions that followed. His progress was slow although ongoing assessment showed that his understanding of language was appropriate for his age. Unfortunately, the communication aid on loan did not quite suit Sam and so a different aid was tried. The local Speech and Language Therapy Service had only a small range of devices available so once again a loan was organised from a company, Liberator. There was a period of several months to wait before a loan device was available and when it finally arrived, Sam was ill and unable to participate in the two week trial. Sam then had to wait another two months before he could borrow the communication aid again. This device was perfect for Sam and he really enjoyed using it to communicate; however, there was no funding available to make the purchase. Sam’s indistinct speech made him unwilling to interact with other people and this was a huge concern to his family. The augmentative and alternative communication (AAC) specialist speech and language therapist assessed Sam about two years after his initial assessment. She identified that Sam would most likely benefit from a communication aid. Initially a symbol board was tried. It was old and unreliable and consequently Sam was reluctant to use it. A higher tech customised talking computer with very specialist software was then loaned to Sam by the manufacturer. Sam liked this communication aid and demonstrated that he was capable of using it to convey single word messages. Sam’s mother says ‘Sam was so happy when he tried the machine and could speak to us and now he is having to wait until somebody finds some money to buy it – 20 months is a long time in his life.’ Sam attends a mainstream school with a full time teaching assistant as he requires support to access most areas of the curriculum due to the severity of his communication difficulties. Outcome A bid for funding to buy the device was made to the Primary Care Trust and the Education Service seven months ago, but sadly there is not currently any funding available for communication aids and so Sam is still waiting. It is now 20 months since his need for a communication aid was first assessed.