The state of specialist services and equipment provision for children with complex communication needs
Augmentative and alternative communication (AAC) is the term used to describe methods of communication which can be used to add to the more familiar methods of speech and writing when these are impaired. It includes unaided systems such as signing and gesture, as well as aided techniques ranging from picture charts and paper-based systems to the most sophisticated computer technologies currently available, which are often referred to as communication aids. AAC can be a way to help someone understand, as well as a means of expression. Increasingly, communication aids and computer technology can be integrated with other equipment, such as environmental controls, curriculum ICT, powered mobility, mounting systems and specialist seating.
The explosion of technology in recent years has produced an impressive range of opportunities to enable children and adults with little or no speech to communicate more effectively using communication aids. However, funding responsibility for high tech devices and access to independent specialist expertise has yet to catch up with this rapidly evolving field. There is still a very low level of awareness amongst the children’s workforce in general about the field of AAC and the difference it makes to the lives of children (and adults) who find it difficult to communicate. The National Year of Communication is a wonderful opportunity to raise the profile of the potential of technology to transform the lives of children with complex communication needs and there are early indications that government policy is beginning to address this issue.
Government requested a summary of the current position of AAC provision in England from the Communication Champion, Jean Gross, who has been instrumental in moving this agenda forward. Her report was submitted to the Department of Health and the Department for Education in September 2010 and details current commissioning arrangements, evidence of good practice, estimated costs and benefits and recommendations for the improvement and development of communication aid provision. Whilst it focuses on issues relating to the provision of communication aids and AAC services for children and young people aged from birth to 19 years, the issues raised are just as real and pertinent for adults requiring communication aids.
The SEN Green Paper has indicated that responsibility for commissioning specialised health services, including AAC, will rest with the new NHS Commissioning Board, subject to parliamentary approval. However, this responsibility already exists with regional specialised health commissioning groups. However, with one exception (ACT in Birmingham), communication aid services are not being commissioned despite their remit to do so. 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.” In a recent survey, explanations for this included the relatively short time since the establishment of the regional specialised health commissioning groups, the pressure of other priority services, such as HIV and bone marrow transplant services, or cited some local arrangements within individual primary care trusts – although this is clearly inconsistent across the country.
In order to consider a model of provision for the future, there are two very simple questions that need to be addressed: how many people need AAC? And, what difference does it make? At the moment, we do not have robust answers to these questions. The Communication Matters: Research Matters project may shed some light on this in the future, but for now these challenges remain.
Using the NHS specialised services definition, electronic communication devices are changing as new technologies reach the market place. The arrival of personal MP3/video player and computer tablet technology has seen a wealth of communication “apps” appear offering cheaper mainstream solutions that do not necessarily accentuate a person’s disability. Eye gaze systems are also appearing increasingly in different guises – this technology enables access to technology by eye movement alone and offers remarkable opportunities for children with complex physical disabilities; however, this technology is currently very expensive. Communication devices for children with a wider range of needs than has previously been considered are also now appearing in the market place. For example, children on the autistic spectrum who have been using a picture exchange system for communication can now have electronic communication devices that build on this strategy. So, trying to capture evidence of the impact of this constantly evolving technology (and for whom) is challenging.
The Better Communication action plan, the Government’s response to the Bercow Report, has gone some way in trying to push forward this agenda and answer some important questions for the future of AAC provision. The Communication Council has approved an AAC Sub-Group, which is chaired by the Communication Champion, Jean Gross, and comprises representation from people who use AAC, their families, local, regional and national health, education departments, services, schools and third sector organisations. This group has identified the following key issues for consideration:
- 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 high 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.
By engaging with the wider activities within the Better Communication action plan, some progress has been made on all of these issues. Despite the constantly evolving landscape of AAC equipment, provision, services and commissioning arrangements, a model for AAC services and provision is evolving, similar to the existing model for Environmental Control System (ECS) services. This model consists of regional services with an identified budget for specialist equipment, assessment, installation, training and periodic review. It has already been proposed in the NHS White Paper that specialised health commissioning, including AAC services, will not be the responsibility of GP consortia, but instead will be overseen by the NHS Commissioning Board. With the current uncertainty about the future arrangements for the White Paper Equity and Excellence: Liberating the NHS, the opportunities for implementing this model for the future hang in the balance. However, we know this technology will continue to evolve and increase in availability as will the numbers of children and adults who can benefit from it.
Anna Reeves is the AAC Coordinator, a post identified in the Better Communication action plan, and is based at the charity ACE Centre North in Oldham, which provides AAC and assistive technology services across the North of England: