cover story: skill mix

Time for communi

With speech and language therapists in short supply and people with communication support needs missing out on the benefits of AAC (augmentative and alternative communication), imaginative solutions are called for. Mike Harrison, Rosanne Lyddon, Cathy Harris and Yunus Hansdot are part of a three year Leonard Cheshire Disability Communication Project involving communication support workers, speech and language therapists and a programme of staff training.
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lmost half of Leonard Cheshire Disabilitys residential service users have communication impairments associated with congenital or acquired conditions such as cerebral palsy, multiple sclerosis and acquired brain injury. The nationwide shortage of speech and language therapists - and the priority given to dysphagia management - means that such clients may not be able to access the help they need. An award winning Communication Project championed by the charity is working to overcome this through employing communication support officers and offering training to staff (box 1, p.10). The charity has recruited a team of ten communication support officers, one for each of the Leonard Cheshire Disability geographic regions. The communication support officers visit service users, staff and volunteers regularly to assist them in developing more effective communication methods and to make sure that speech and language therapy recommendations are put into effect within the service users own environment. Journey time to clients can be up to 4 hours depending on the area covered. On average a communication support officer sees 8-10 clients at a time, spending 60-90 hours with each, although this can be less if there is a simple solution. On receiving a referral, the communication support officer checks if a speech and language therapist is already involved, then makes contact with them. The majority of clients referred have no AAC system in place, and some have old or obsolete equipment which is no longer insured. The ethos of the project is to find a low tech and low cost solution if possible. The communication support officers all have PCS Boardmaker, so can introduce Communication Passports, symbol books and spell books if they will be helpful. Training has been provided by the Communication Aid Centre at Frenchay Hospital in Bristol, and the communication support officers can use the CAC-Frenchay Screen for AAC.

tion by a team from University College London. It is funded by a grant of 737,000 from the Big Lottery Fund, with additional funding from UniChem (part of Alliance Boots) and Lloyds TSB Foundation for England and Wales. It has been introduced in Leonard Cheshire Disability services throughout the UK, following a successful pilot project in the charitys central region, which covers Bedfordshire, Berkshire, Buckinghamshire, Gloucestershire, Hertfordshire, Northamptonshire, Oxfordshire and Warwickshire. Leonard Cheshire Disability has a fundraiser in each region so, if the NHS and Social Services will not or cannot fund a high tech communication aid when a need is identified, the charity tries to source funding that includes a commitment to maintain the aid.

The ethos of the project is to find a low tech and low cost solution if possible.
The project started with communication support officer Rosanne Lyddon. She had been a care assistant for 6 years and was not particularly experienced with speech and language therapy issues, so describes the development of the project as a learning curve. Her work involves assisting the service users to explore and improve their own personal communication system(s) and also look at how other people communicate with them. Sometimes her role is to raise awareness of an individuals communication style and preferences. This might include someone who indicates yes / no with an eye flicker, or agreeing with a client how many times it is acceptable to ask them to repeat something before they resort to an aid. One lady with a degenerative condition is keen to maintain her speech for as long as possible. She was anxious that a communication aid would make her lazy, but is happy with the support of a spell board. Rosanne feels one of the big advantages of the communication support officer role is that it

gives clients the benefit of time. This gets them back into the way of having conversations and gives people who have an element of institutionalisation some choice and independence. Clients can also be involved in creating their own Communication Passport or Book. Talking Mats has proved useful for finding out about a clients likes and dislikes. The communication support officers encourage clients to be as honest as possible about where they live / staff / residents / money, but only pass on the comments with consent. A side effect is that this offers information about the daily routine which is useful when it comes to programming a high tech aid. Making sure that the support package is delivered to the service user in an accessible and empowering way has the knock-on effect of improving the communication skills of everyone connected with the service. This has two benefits. The speech and language therapists have someone who will follow up their recommendations and work with clients on a regular basis. And, just as important, the communication support officers become a ready source of support for clients, ensuring that their communication needs are understood and catered for by staff. Turnover of staff can be high in residential services, but the communication support officers ensure continuity for this particularly vulnerable group of clients.

Reaching people

Evaluation
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The Communication Project is being independently evaluated throughout its three year dura-

Often disabled children and young adults with communication impairments are well catered for at school, but support can fall away as they reach adulthood. The Communication Project is reaching people who have not had access to speech and language therapy as they move into the community or into residential services, and do not have appropriate ongoing support in the environment in which they live. Yunus Hansdot (37) has cerebral palsy and is a resident at Leonard Cheshire Disabilitys service in Cheltenham. Staff supporting Yunus on a daily basis first asked Rosanne for advice in October 2005 because they realised that he was upset but did not know why. He wanted to tell them hed

SPEECH & LANGUAGE THERAPY IN PRACTICE SPRING 2008

ication
like to change his key worker but he was finding it difficult to express himself. He was visibly frustrated and everyone thought it was a bigger problem than it was, remembers Rosanne. Yunus has good auditory comprehension and recognition of symbols but very limited intelligible speech. The first thing Rosanne did was renew his Bliss book - a communication aid based on symbols which can be used in isolation or in sequence to create a message. When you meet Yunus you can see that he has a lot to offer, says Rosanne. He has a wicked sense of fun and likes to crack jokes also he has a sense of adventure. Seven years ago, Yunus undertook a sponsored tandem skydive to raise funds for a communication aid - the Pathfinder with Minspeak - which was then purchased. This is an excellent device but it was not right for him. Rosanne recognised this and discussed the problem with the service manager and staff who had worked with Yunus. It was agreed that Yunus should be referred to a speech and language therapist. Cathy Harris, lead therapist for communication aids in the adult service at Gloucestershire NHS Primary Care Trust, says that Yunus case highlights the need for ongoing specialist assessment and input for people who use communication aids, especially after the transition from education to adult services. When I met Yunus, he was finding his current communication aid very frustrating. He was adamant he didnt want to try to use it. Yet he is a great total communicator and knew what he wanted from a speech output device, especially in relation to size and accessibility. Cathy was able to reassess his current needs fully, and Yunus has been supplied with a more appropriate device a Dynamo. If someone isnt assessed by a speech and language therapist, money can be wasted on inappropriate equipment. Its about looking at a persons environment, assessing their needs and abilities, giving them choice, and not being afraid to try different things out over a period of time. The trial period is really important as it can show whether the device is going to be useful to them in the longer term, says Cathy. The Dynamo is mounted on Yunus wheelchair on a quick release mount. The touch screen

cover story: skill mix

L-R Cathy Harris, Rosanne Lyddon, Yunus Hansdot. Courtesy of Leonard Cheshire Disability.

Making sure that the support package is delivered to the service user in an accessible and empowering way has the knock-on effect of improving the communication skills of everyone connected with the service.
is divided into nine sections, for ease of access, and the chosen category headings reflect Yunus needs and interests. Once Yunus feels confident locating and accessing one level, new vocabulary is added onto the next level. Rosanne has learned to programme the Dynamo and works with him to make sure that all the information is personal and up-todate. So, for example, hobbies includes motorbikes. Yunus loves Harley Davidson bikes and goes to the International Motorcycle & Scooter Show at the NEC in Birmingham each year. Information and comments can be added before and after the event. In the cold drink section there is Bud please and If I cant have a Bacardi Ill just have a coke. He also has a swearing section but hes careful how he uses this. Cathy says the advantage of speech output is that someone can more easily attract attention

and ask questions, so they are initiating speech and communication rather than just being in response mode. The Dynamo is still just one part of Yunuss communication system. He also uses his low tech Bliss book and Rosanne is working on putting together a Communication Passport, which will help new staff build a relationship with Yunus and understand his needs and preferences more quickly. Key to all his communication and having his needs met are a supportive environment and staff with time and the necessary skills. After the initial assessment and input, Cathy only needs to visit Yunus every few months, but Rosannes ongoing role is crucial. Cathy knows that she can rely on Rosanne to put her recommendations into practice and to let her know if a problem arises. One of Rosannes priorities is to make sure all staff know that Yunus has his Dynamo when he needs it. Rosanne also meets Yunus regularly to work on his vocabulary on the Dynamo, which they are expanding all the time. In residential homes, service users benefit from having a person like Rosanne, especially if there are frequent changes of care staff, says Cathy. In addition to training staff, Rosanne supports and encourages Yunus to use his communication systems. The role of the speech and language therapist is to assess, plan and deliver intervention and then to enable the communication support officers to follow up any recommendations, supporting them as necessary.

Interactive and confident

Now that Yunus is well supported he is making full use of his low tech Bliss book and high tech Dynamo communication systems. The Dynamo means that he is able to interact much 9

SPEECH & LANGUAGE THERAPY IN PRACTICE SPRING 2008

cover story: skill mix more readily when he goes out and meets people. Rosanne says that members of staff have noticed a difference in Yunus since he started using the Dynamo. Hes able to be more interactive in group activities, more verbal and more confident. Cathy feels the way Leonard Cheshire Disabilitys Communication Project is accessing expertise is invaluable. Knowing my visits will be followed up is key. The communication support worker can make sure that recommendations are acted upon, which benefits the clients who may not be able to speak up for themselves. With constraints on spending in the NHS, Cathy adds it is crucial that resources and equipment are strategically deployed. The Communication Project is an excellent initiative. It utilises a collaborative approach to care, with an understanding of the importance of services being delivered where a person lives. Individuals feel more supported and are able to make the best use of their communication systems in their own environment. Rosannes enthusiasm also shows no signs of diminishing. As a communication support officer she has access to the membership benefits of Communication Matters and to equipment roadshows, healthcare exhibitions and the expertise of suppliers such as Possum. The team is also extending links with other agencies such as the ACE Centre in Oxford, University College London and Scope. So, what keeps her going? Rosanne says, I want to see it through because I have been involved for so long. I really enjoy doing the job, working with service users even on the bad days when I want to throw the laptop out! Starting with someone who may have nothing and seeing them at the SLTP end, just making that bit of difference. Rosanne Lyddon can be contacted on 01295 713250. Mike Harrison is the Leonard Cheshire Disability Communication Project Co-ordinator, Central Office, 30 Millbank, London SW1P 4QD. Leonard Cheshire Disability supports over 21,000 disabled people in the UK and works in 52 countries. It campaigns for change and provides innovative services that give disabled people the opportunity to live life their way. Visit www.LCDisability.org for more information.

Box 1 Communication training An important element of the project is the training course that Leonard Cheshire Disability staff receive, which ensures they give service users the best possible support for their communication needs. The course recently received recognition at the Greater London Training Awards, when Leonard Cheshire Disability was presented with a Highly Commended award. This is part of the National Training Awards which were set up to celebrate businesses, organisations and individuals that achieve outstanding success through training and development. The awards are sponsored by City & Guilds. The charity has so far trained approximately 250 staff and volunteers, raising awareness of communication issues and introducing AAC techniques ranging from simple symbol boards and Talking Mats to sophisticated voice output aids. The course was collaboratively developed by Tom Presland and Marianne Scobie of Leonard Cheshire Disabilitys Service User Support Team, with help from the charitys Regional Training Manager, Diane Perry. All staff who work with people with communication impairments at Leonard Cheshire Disability will attend this course over the next three years.

Resources

ACE Centre Oxford, www.ace-centre.org.uk Bliss Symbolics a symbolic graphical language, www.blisssymbolics.us Boardmaker with Picture Communication Symbols, www.mayer-johnson.com Communication Matters, a UK charity concerned with AAC needs, www.communicationmatters.org.uk Communication Passport a low tech resource to help with communication of personal information related to a persons care and preferences, www.callcentrescotland.org.uk Dynamo a symbol based communication aid with a dynamic display and digitized speech output, www. dynavox.co.uk Frenchay Hospital Communication Aid Centre and Screening Tool, www.cacfrenchay.nhs.uk/ Pathfinder a powerful communication aid with synthesized speech output using Minspeak language system accessed via a static keyboard, www.prentkeromich.co.uk Scope, a UK disability organisation, whose focus is people with cerebral palsy, www.scope.org.uk Talking Mats a low tech communication framework involving symbol sets, www.talkingmats.com University College London project evaluation, www.ucl.ac.uk/HCS/research/projects/?projectid=45

DO I SEE THE INCREASE IN SUPPORT WORKERS AS AN OPPORTUNITY TO SPREAD GOOD COMMUNICATION PRACTICE? DO I ACCESS RESOURCES FROM THE VOLUNTARY SECTOR? DO I USE PROJECT MANAGEMENT PRINCIPLES WHEN PLANNING A SERVICE DEVELOPMENT? How has this article been helpful to you? What is your experience of working with the voluntary sector and support staff? Let us know via the Spring 08 forum at www. speechmag.com/Members/

REFLECTIONS

news extra

SEN outcomes debated

A private Members Bill to require central collection and annual publication of information relating to children with a range of Special Educational Needs has passed its second reading in Parliament and is being supported by the Government. A private Members Bill is a proposal for new legislation that is debated by Parliament. Sharon Hodgson MPs motivation for initiating it came from personal experience. Her son, diagnosed as severely dyslexic, has had variable speech and language therapy input depending on the familys location rather than his needs. She believes that analysing existing data and gathering new information that focuses on monitoring outcomes will raise expectations and achievement. The MP said, It will be a step in the right direction to record whether children with SEN are happy, safe, enjoying school, achieving personal targets, making a positive contribution to society and, where possible, going on to achieve independent economic well-being. We can then highlight the valuable contribution that children with SEN can go on to make. The Special Educational Needs (Information) Bill now goes forward to a Committee for more detailed consideration. www.publications.parliament.uk/pa/pahansard.htm

Anti-social networks

Ability Net has drawn attention to the ways that social networking websites, popular with young people, are excluding people with disabilities. The charity reviewed Facebook, MySpace, Bebo, YouTube and Yahoo. It says, Many of the barriers to accessibility we encountered could be easily remedied and it was shocking how little response we received when we approached the sites for advice on these issues. www.abilitynet.org.uk

Changing attitudes

Leonard Cheshire Disability has teamed up with the makers of Wallace & Grommit, Chicken Run and Creature Comforts for a media campaign to challenge and change attitudes towards disability. Creature Discomforts includes plasticine characters using wheelchairs, sticks or crutches, combined with the real voices and experiences of disabled people. Steve Harding-Hill from Aardman Animations commented that creating animated stories that are informative, entertaining and poignant has been an immense but incredibly satisfying challenge. www.creaturecomforts.org

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SPEECH & LANGUAGE THERAPY IN PRACTICE SPRING 2008