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

45. 
    AAC devices are expensive because they are specially made for a small market, and because current procurement systems are inefficient. Users would prefer aids to look and feel like the mass-market technology used by their peers, with a risk that they become embarrassed if using devices which are clearly out of date, but this poses problems. Aids need to be robust enough to withstand constant use in everyday environments. They need to have an all-day battery, amplification, environmental controls with connections and a mounting point. However, they also need to be light enough to be portable by children, often all day, without causing physical strain. Some elements of assistive technology are highly personalised, and therefore particularly costly. An example is eye gaze technology, which allows a user to input to a communication aid and environmental controls through eye movement alone.
    
46. 
    Off-the-shelf PCs do not currently provide all these features. They may well in the future, with technology like the iPad presenting new opportunities, and this could bring costs down. Stimulating the market, through improved and more consistent commissioning, would encourage companies to invest in the research and development that would be needed to make use of these opportunities. Currently, the market is mainly one of small providers, with nine companies accounting for the majority of sales, and profit margins insufficient to fund such research.
    
47. 
    Figures compiled by AAC supplier members of BHTA eCAT (British Health Trade Association – electronic Communication and Assistive Technology) show that in 2009 they supplied just over 1,000 hi- tech aids to adults and children in England, with the total spend by schools/colleges, local authorities, the NHS, charities and individuals approximately £3.28m.
    
48. 
    The NHS accounted for the largest volume of sales and spend (44% of sales and 38% of spend).Local authorities (education and social care) accounted for the next highest volume and spend (18% of sales and 26% of spend), followed by schools and colleges and charities in roughly equal proportions – schools/colleges having higher volume but lower spend.
    
49. 
    Between 2008 and 2009 there was a 7% increase in volume and a 6% increase in spend. Between 2007 and 2008, the increase in sales was 21% and the increase in spend 43%. The sharp rise in spend may be attributable to the growth of higher cost eye-gaze technology.
    

50. 
    Effective practice in the local areas visited in preparing this report includes a number of key elements. Children and young people who will benefit from communication aids do not simply require a piece of hi-tech ‘kit’. They need detailed assessment, the opportunity to trial aids until the right match to their needs can be found, adaptations to fit the aid to a wheelchair and/or to integrate it with environmental control systems, training for themselves, for 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. Evidence from Norway shows that ‘it is not sufficient to invest in additional equipment without a clear framework for multiagency planning and delivery and the essential speech and language therapy and other support services required to make equipment optimally functional for the AAC user.’¹¹
    

51. 
    Most important is a multiagency approach. Skilled assessment of the young person’s communication needs, and subsequent after-care, will typically involve a speech and language therapist with specialist expertise in AAC, an occupational therapist, a technician and teaching staff working closely with the young person, their family and staff in education and care settings.
    
52. 
    These elements can be provided by local teams, such as that in Kent.
    

53. 
    Local teams like that in Kent, where they exist, in most cases also access to highly specialist advice and training from regional tertiary services. With a prevalence rate of around 0.05% for hi-tech AAC needs, local teams in low-population LAs/PCTs may only deal with a tiny number of cases a year. As with any low-incidence need, effective provision for complex cases requires a partnership between local services and specialist regional or sub-regional services. This is particularly important in a rapidly changing technological field, such as AAC.
    

54. 
    An essential feature of effective provision in the local areas visited in the preparation of this report was an agreed budget for the purchase of communication aids, and a transparent policy agreed by all agencies on how decisions will be made on the use of the budget.
    

55. 
    Several of the local areas visited had developed effective local training for AAC.
    

56. 
    The transition from child to adult services at worst leads to a young person losing their ability to communicate when they reach adulthood, because, for example, their communication aid has been funded through a special school that they have left.
    
57. 
    In some areas, however, effective models of provision ensure that this does not happen.
    

58. 
    The AAC coordinator and AAC sub-group of the Communication Council have identified the following characteristics of a quality system for the provision of AAC.
    

• 
  A holistic approach to early identification of the need for AAC and appropriate intervention.
  
• 
  Access to meaningful data on the need for AAC, and specifically the need for hi-tech AAC.
  
• 
  Effective, coordinated joint commissioning of AAC services.
  
• 
  Raised awareness within the children’s workforce of what AAC is and the difference it makes.
  
• 
  Mapping competencies for the AAC workforce and the development of national standards in AAC service delivery.
  
• 
  Clearly defined lines of responsibility for funding AAC services and provision.
  
• 
  A sustainable network of equitable targeted and specialist AAC services across England.
  
• 
  Professional development opportunities for the children’s workforce in implementing AAC for those children and young people who need it.
  
• 
  The ability to demonstrate the application of ‘Value for Money’ in AAC provision.
  

59. 
    This report has identified much good practice in local areas working towards the features of a quality system identified by the AAC coordinator and AAC sub-group of the Communication Council. It has also identified many gaps, particularly in the identification of children’s needs and the coherence and consistence of commissioning. The recommendations which follow seek to address these gaps.
    

60. 
    Whilst highlighting some good local practice in commissioning and providing services for children and young people in need of hi-tech AAC, this report has provided evidence that responsibility for commissioning communication aids remains unclear, and that progress towards joint commissioning by PCTs and local authorities has remained slow and patchy in the two years since the Bercow Review was published.
    
61. 
    The transformation of health services set out in ‘Equity and Excellence: Liberating the NHS’ offers an opportunity to resolve these longstanding and difficult issues. The White Paper makes clear that the new NHS Commissioning Board will commission national specialised services and regional specialised services set out in the Specialised Services National Definitions Set. It will be expected, therefore, that the NHS Commissioning Board will commission regional services for AAC.
    
62. 
    The most effective AAC services seen in the course of preparing this report have been those which link regional provision of specialist assessment and of aids with local expertise from multi-professional teams, who provide after-care and support for the child/young person and the professionals who live or work with them. This is the ‘hub’ and ‘spoke’ model already used with other types of speech, language and communication needs, notably cleft palate and, to a less well developed extent, stammering. It is the model used in the only region (West Midlands) where specialised regional commissioning is working as the current Specialised Services National Definitions Set guidance suggests it ought to. It was the model recommended by the Bercow Review and in Scope’s 2009 No voice, no choice report. Internationally, it is a model used very successfully in Norway for all assistive technology¹².
    
63. 
    It is recommended, therefore, that government ask the new NHS Commissioning Board, once established, to take forward the commissioning of regional AAC ‘hubs’ as a matter of urgency.
    
64. 
    The number of hubs should be determined on the basis of population numbers plus geography. Where a region has a large number of children and young people (for example the South East, and London) or covers a wide geographical area (for example the South West, and the East of England), commissioning might be on a sub-regional basis.
    
65. 
    Adult services and the provision of assistive technology other than AAC are outside the scope of this report, but the evidence of difficulties for users on transition to adulthood, and user views on the imperative to align communication aids with other forms of technology they use regularly, suggests that there is a strong case for following the West Midlands all-age, all-assistive technology model. It is recommended that government consider commissioning regional AAC hub services on an all-age basis, that also includes the full range of hi-tech assistive technology as well as communication aids.
    
66. 
    These regional hub services might build on the existing effective arrangements for Environmental Control Services. It is suggested that the NHS Commissioning Board might, when inviting tenders for providers of regional hubs, specify that they provide:
    

• 
  Specialist multi-professional assessment of the communication needs of clients referred by local ‘spoke’ AAC teams, involving speech and language therapists, occupational therapists, teachers and technicians
  
• 
  Assessment in the client’s home or school setting, taking equipment and staff to the child
  
• 
  The provision of equipment on a short and long term loan basis
  
• 
  Recycling of equipment when no longer needed by a user
  
• 
  Training in the use of the equipment for clients and those who live and work with them
  
• 
  Dedicated teaching and learning interventions to support the development of independent communicative competence in children who use AAC
  
• 
  Same-day response to users in case of equipment malfunction
  
• 
  Training to increase the AAC competence of the disabled children’s workforce, at universal, targeted and specialist levels
  
• 
  Involvement of adult AAC users in training and supporting others
  
• 
  Data collection, including data on regional prevalence and the impact of AAC provision and allied support (outcome measurements), in order to inform the work of the NHS Commissioning Board.
  

67. 
    The specification should include the provision of aids as well as assessment, training and support, in order to avoid the post-code lottery that inevitably arises when commissioning for low-incidence, high cost and specialist needs is conducted at local level.
    
68. 
    A second advantage of including provision of aids is economies of scale. Organisations commissioned to provide the regional hubs would be able to enter into agreements with preferred suppliers, at lower cost than if local commissioners purchased equipment. They would be able to shape the market, insist on warranties, and hold suppliers to account for poor services. Alternatively, there could be a national procurement process, on the model used currently for Environmental Control Services, where there is a national NHS Assistive Technology contract with suppliers.
    
69. 
    Coherent and consistent procurement would in turn ensure a vibrant, innovative and sustainable supplier base working within an efficient and responsive market.
    

70. 
    The White Paper also proposes that quality standards, developed by NICE, will inform the commissioning of all future NHS care and payment systems.
    
71. 
    Quality standards for AAC services for children are currently in preparation, as part of the work of the AAC Coordinator and AAC sub-group of the Communication Council and Communication Matters, within the Better Communication Action Plan. It is recommended that government ask NICE to review and if appropriate adopt these quality standards for AAC services.
    
72. 
    It will be important that the quality standards adopted include the provision of information to users and their families, so that they are clear what they can expect, and from whom.
    
73. 
    The quality standards could be linked to the stages of an agreed AAC Pathway, developed for example from local models such as the one used in the West Midlands (http://www.sbch.nhs.uk/about-us/divisions-and-directorates/specialist-services/rehabilitation/west-midlands-rehabilitation-centre/services/act/).
    
74. 
    The mismatch between estimated population prevalence of AAC need and take-up in the local areas visited in the preparation of this report suggests that more needs to be done to provide information on the availability of AAC and the types of need for which it is suitable. It is recommended that any quality standards adopted by NICE include better signposting of services for individuals, parents and professionals working with children and adults who can benefit from AAC.
    

75. 
    There is already a good range of organisations with a track record of providing the type of services envisaged in the ‘hub’ model (Regional_AAC_children’s_services_currently_available'>Appendix B). They include NHS providers, charitable Trusts and maintained and non-maintained special schools. Commercial organisations supplying communication aids might well also be interested in entering the market.
    
76. 
    However, some of the organisations with a good track record are currently fragile, because they rely on short-term charitable grants or on a series of individual Service Level Agreements with PCTs and local authorities which, in the current economic climate, are becoming increasingly difficult to secure.
    
77. 
    Government grants, made under the Better Communication Action Plan (BCAP), are proving crucial in ensuring that the expertise in these organisations is not lost. It is recommended that these grants are maintained until the end of March 2012 (as originally planned in BCAP), or until such time as the NHS Commissioning Board has completed the process of commissioning regional hub AAC services, whichever is the earlier.
    

78. 
    In this model, ‘spoke’ AAC services would continue to be commissioned locally, alongside other community children’s services, in ways that fit particular local needs and resulting service configurations. In some areas, for example, GP consortia together with the local authority might commission integrated services for disabled children which work out of special schools. In others, the services might be provided differently.
    
79. 
    It is recommended that the commissioning tools for SLCN that are currently being developed within the BCAP 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.
    

80. 
    An alternative to the model proposed here, in which communication aids are provided by regional ‘hub’ services following detailed assessment and consultation with users and their families, would be to provide personal health budgets so that users and their families could make their own choice of assistive technology, from communication aids to environmental controls and perhaps even mobility aids. The NHS Commissioning Board might enter into a framework contract with a number of ‘one stop shop’ suppliers, from which users could choose. Framework contracts could include training in the use of aids, and aftercare, and specify response times to fix problems.
    
81. 
    The difficulty with this model, however, would be ensuring that individuals are aware of what communication aids are available to meet their needs and know how to access the specialist assessment that is essential to determine precisely what aid will be most suitable. Tariffs for personal budgets would need to be set on the basis of the actual costs of equipment recommended as a result of assessment. This would lead to a fairly meaningless ‘choice’ for users. It is difficult to envisage, too, how users with personal budgets would access the complex package of multi-professional aftercare they need if they are to obtain maximum benefit from a communication aid.
    
82. 
    There is no evidence, moreover, that users or parents want the level of choice that a personal budget model implies, given the level of knowledge that needs to underpin choice in a rapidly-changing, highly technical field. The parents who have provided the case studies in this report have found that too much knowledge and expertise is expected of them already. One parent says: “I live in fear of discovering something I should or could have done or requested to improve my child’s life chances, and I’ve often been asked to make choices when I really haven’t fully understood the pros and cons”. What parents want is to have that weight taken off their shoulders by informed, responsive services that provide the most appropriate form of AAC for their child, quickly, without bureaucracy, and without arguments over who pays.
    

83. 
    If it is to be the commissioner of AAC services, the NHS Commissioning Board will need mechanisms for holding providers to account. Users and parents, too, will need to be able to challenge the provider if it is not providing what they need.
    
84. 
    It is recommended that government work with Communication Matters to develop outcome measures that effectively capture the impact of AAC on users’ quality of life and social participation. AAC lends itself to outcome measures based on quality of life (social participation, friendships, wellbeing), and educational attainment. Communication Matters have already begun to survey the field, looking for example at an American measure, PIADS, which assess the impact of devices on quality of life. It should not prove difficult to put a package of outcome measures in place alongside the new commissioning system proposed here.
    

85. 
    Lack of training for professionals who work with children and young people using AAC has been flagged up in this report as a problem. It is recommended that the SEN 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.
    
86. 
    This would create a market in settings and schools for appropriate training. Work is currently underway to develop a model of specific AAC competences at universal, enhanced and specialist level that can sit within the existing SLCN competency framework developed by The Communication Trust. The framework will make it possible for assessments of SEN to specify the levels of competence required, for example, by a child’s class or subject teachers, and by the members of local enhanced services supporting the child. It will also make it possible for national, regional and local providers to link the training they offer to the three levels of competence. Training is critical so that professionals allow AAC users, with the technology with which they are supplied, to engage fully in classroom discussions and the curriculum.
    

87. 
    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. This is based on:
    

• 
  An assumed 0.05% prevalence rate
  
• 
  The Office of National Statistics mid-2009 population estimate, of some 12.4 million children and young people aged 0-19
  
• 
  An average cost of £3,500 per aid. This figure is derived from the average cost of equipment provided during the Communication Aids Project (CAP), which was a national government-funded initiative to provide communication technology for children with complex needs
  
• 
  An average three-year period before an aid needs to be replaced because of changes in the user’s needs, or new technological developments,
  
• 
  less savings resulting from assumed 10% equipment recycled for use by another child or young person.
  

88. 
    The annual cost of providing regional ‘hub’ services is more difficult to estimate. However, based on costs of delivering AAC services to support CAP, and estimated costs from existing specialist AAC services, it is anticipated that this figure would be in the region of £350,000 for each region, or some £3.2 million nationally.
    

89. 
    The main benefits of providing AAC are an increase in the numbers of economically productive adults. There is increasing evidence of adult AAC users entering employment – running their own businesses, for example. It has been estimated that every disabled young person whose employment status changes from permanent unemployment to permanent employment as an adult as a result of use of communication aid will realise benefits in the order of £500,000 over a working lifetime¹³. At this level, 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 £310 million to the economy over those individuals’ lives.
    
90. 
    Other identifiable benefits/savings include:
    

• 
  increased efficiency for local services - reducing lost time due to working outside of competence;
  
• 
  reduction in unproductive staff time spent making multiple applications for funding for equipment, from charities and elsewhere;
  
• 
  reduction in current wastage of inappropriate equipment that is provided following inadequately skilled assessment;
  
• 
  reduction in healthcare costs due to increases in users’ wellbeing;
  
• 
  over time, reduced costs of equipment as a result of more coherent procurement , generating economies of scale and driving efficiencies ;
  
• 
  reduced costs to schools and local authorities in providing teaching assistant support for children, as a result of the increased independence provided by the use of communication aids;
  
• 
  reduction in levels of dissatisfaction with statutory provision by parents of disabled children;
  
• 
  innovation in product design and development.
  

‘Well we have actually learned a great deal about all sorts of things! But actually much of it should not have been down to us. So what we have, unfortunately, learned is that if we do not do it or push for it, it will simply not happen, or not happen in any meaningful way!’