COVER STORY: COMMUNITY DEVELOPMENT

Kick Starting Total Communication
Driven by a desire to see the communication needs of adults with learning disabilities given a higher priority, Helen Page and Viki Baker kick started an ambitious programme of cultural change, where communication is seen as the solution rather than the problem.
READ THIS IF YOU WANT TO • GET COMMUNICATION ON THE COMMISSIONING MAP • DELIVER A SOLUTION FOCUSED, USER-LED SERVICE • WORK OUTSIDE TRADITIONAL BOUNDARIES TO MAKE THINGS HAPPEN

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s with most speech and language therapists working in adult learning disabilities, our team in Sussex was frustrated that basic communication issues for many of our clients were not being addressed or given high priority by the services they received. For example a hearing impaired client who can sign, living in a non-signing environment; nonverbal clients being described as ‘unable to communicate’. Our team felt communication would continue to be a low priority without increased drive, awareness, understanding and energy targeted to this crucial area by the local Commissioners and Learning Disabilities Partnership Board. These boards have been set up across the country as directed in Valuing People (DH, 2001) and reinforced in Valuing People Now (DH, 2009) to ensure that people with a learning disability and their carers have a say in planning and developing services and policies. Viki Baker is Professional Advisor for Speech and Language Therapy at Sussex Partnership NHS Foundation Trust. She designed a project which would both kick start an agenda to address the communication needs of people with learning disabilities and be part of establishing a Total Communication Strategy for East Sussex. The Kick Start Communication project was all about changing a culture. It would place communication central to policy and planning, and view it as the solution and not the problem facing local services. A project proposal to the Learning Disability Development Fund in 2007 successfully secured funding for venues, resources and one day a week of speech and language therapy time to coordinate the project. Kick Start Phase 1 started in 2007 with a series of road shows across East Sussex in community venues such as the civic centre in Uckfield. These road shows showcased and promoted total communication. They were designed for users and for people who support, care for, or come into daily contact with people with a learning disability in the course of their work.

I was keen to take on the role of the Kick Start Communication project worker, and the whole team relished the idea of working outside their traditional professional roles in this new and creative way. We worked in partnership with local users, carers, voluntary organisations, advocacy services and local authority and policy officers to plan and organise the events. They joined us from the beginning, doing everything from being members of the steering group through to running stalls and workshops.

Immediate impact

The road shows enabled people with learning disabilities to see and try out a range of total communication approaches and tools. They also proved a good way to increase families’, carers’ and support services’ awareness of total communication approaches and resources. The stalls showed how simple, practical ideas can make a big difference and immediately have an impact on the daily lives of people with learning disabilities. We think what made the road shows successful was the range of resources on offer. While there were some commercially produced aids, the majority were simple paper examples that could easily be made by carers using the information sheets provided. There were over 15 stalls including ones on visual planners, talking mats, intensive interaction, signing, voice output aids and making simple communication aids. It was an opportunity for those attending to see examples of best practice and to meet service users on the speech and language therapy caseload who already have effective communication systems. In addition speech and language therapists offered a drop-in service where people could come and discuss any communication issues. They went away with ideas and resources which they could develop further. One happy visitor went home with a key ring to make his communication aid. His speech was unclear but he refused to carry a communication

Our cover star Cherry Lane (centre) enjoys the Festival of Togetherness (p.6) with carer Helen Martin (left) and sister Holly Holt. Photo by John Cole.

book. This was reducing his independence as he was relying on carers to communicate on his behalf. The speech and language therapist suggested using small laminated cards with set phrases and symbols representing activities and topics he wants and needs to communicate, and attaching them to a key ring. In the first year nearly 500 people attended three road shows across East Sussex. They came from a wide range of backgrounds, locations and services, and over half had a learning disability. Other attendees were staff / carers, professionals working in the adults with learning disabilities field and members of the public. The feedback gathered at these events was all overwhelmingly positive. One mother commented, “This is the most helpful conversation I have had in my whole experience of professionals talking about my daughter, and she is 19, it was really worth me coming.” A residential staff member wrote “absolutely brilliant and very inspirational, I can’t wait to try some ideas out when I get back to work.” Sussex Partnership NHS Foundation Trust gave its innovative services award to this project in 2007. The success of Kick Start Communication Phase 1 put total communication on the commissioning map

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SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2010

COVER STORY: COMMUNITY DEVELOPMENT
as a top priority and secured funding for year 2. The East Sussex Commissioning strategy ‘Strong Voices Big Ideas’ has key objectives and funding for total communication work in East Sussex, and has enabled a series of other total communication projects to obtain funding via a Total Communication Strategy. Kick Start Phase 2 provided a combination of training initiatives, road show events, speech and language therapy drop-ins and workshops, all of which focused on prevention of communication difficulties. They gave staff the information and tools to make their work places into Total Communication Environments, where signing, gesture and using pictures are part of the culture. Kick Start also acts as a signposting service to other East Sussex communication projects such as an intensive interaction project and new training initiatives. We improved road shows by increasing resources, marketing, and developing the drop-in service. We ran a programme of workshops concurrently at road shows. One popular session was by Decoda, a local social enterprise specialising in working with people with profound disabilities. As Tom Smurthaite of Decoda says, they are “using sound and music as a catalyst for change and to spark new ways of communicating”. Two hundred people attended the annual ‘maxi’ road show in 2008, and 80 of these were people with a learning disability. We also introduced ‘mini’ road shows which travel to residential services to consult around communication and to link with local person centred planning initiatives. We held mini road shows at the Conquest Hospital, Hastings and the Eastbourne District General Hospital, as part of Learning Disability Week. These mini road shows were aimed at hospital staff and focused on resources relevant to the hospital setting, for example simple pictures showing procedures such as injections and blood pressure, and the best ways to communicate with people with a learning disability who receive outpatient services. and strategic planning of services across East Sussex for people with learning disability. One member, Tim, came to a session in Eastbourne where a number of people got together to plan and agree the standards and evidence. We then took the draft standards to the full Involvement Matters Team. They went through each standard doing role plays, exploring the meaning and impact of the standards and thinking about their own views and experiences. We have successfully secured further funding for 2009/10. This will enable the Kick Start team to use the resources and ideas developed over the last three years to establish a programme of events including: • a road show and workshops targeted at families and focusing on transition / school leavers and higher education, run in partnership with education / colleges and paid services • a whole range of innovative workshops to ensure implementation of the Total Communication Standards • a series of mini road shows aimed at improving competencies and knowledge of both the learning disability workforce and the general public to improve quality of relationships for people with a learning disability • targeting universal services such as libraries, police and transport, in partnership with the Community Connections project which employs staff with learning disabilities • extending total communication awareness into the public domain such as supermarkets and leisure centres. We have learnt a lot from the past three years and will put this knowledge to good use. For example we will target supermarkets that already employ people with learning disability. Their experiences of working will directly influence our displays to make them more relevant to staff and customers. We will ensure that the road shows demonstrate and model total communication through stalls, workshops, speech and language therapy drop-ins, drama, music and make-and-do activities in creative and energising ways.

Case examples Darren Darren’s carers brought him along to See A SaLT to try and get help for his high anxiety around activities. The therapists recommended using photos on a visual timetable to plan his day. The carers were invited to our total communication training on visual planners and produced a timetable to suit Darren’s needs. He is much less anxious now he can see what is going to happen. Paula Paula has a severe learning disability and is very difficult to reach. She has a range of self-stimulatory behaviours and shows no motivation to be with other people. The See A SaLT therapists suggested introducing intensive interaction with Paula. This is an approach where interactions are led by the person with a learning disability. The therapists also signposted the carers to Inter-act Now, the East Sussex Intensive Interaction Network. This brings all those using or interested in using intensive interaction together to share experience, develop skills and support those wanting to promote an intensive interaction approach within services.

New model

As a direct result of offering drop-ins at the road shows, we have developed a new model of working called See A SaLT. These sessions provide practical advice and support without people having to wait a long time for a more traditional service. They are a quicker and more efficient way of managing the caseload. Sessions are solution focused and user-led. The See A Salt sessions are provided as a part of the Total Communication Strategy. They work effectively because they are one element of a comprehensive range of services (see case examples). We have established with users and carers a set of Total Communication Standards in services to monitor and audit approaches. Members of the Involvement Matters Team were involved in creating the standards. This group of people with learning disabilities work for the Learning Disability Partnership Board. They are involved in co-designing

Real stories

The Learning Disability Development Fund has financed a Total Communication Resource pack. This is a booklet detailing all the total communication resources available to people with learning disabilities. Its exciting features include real stories of people using their communication aids successfully, photos and signposting to websites, organisations and local groups. It also includes the Total Communication Standards. We have produced a short film of local people with a learning disability communicating to show that total communication is about building relationships and self-esteem, getting to know each other and togetherness. It is a very inspirational film and a great introduction to our training.

We are working on our second film which will link directly to the Total Communication Resource pack. It will show people demonstrating how communication tools such as picture timetables help them in their day-to-day lives. Excerpts from this film will be used as part of an online resource pack. For example, when the pack describes a communication passport, you will be able to click on the icon of a passport to see a short film of someone using one. Both films will be available on DVD and the online package will be available some time in 2010. Kick Start has highlighted the communication needs of people with learning disabilities and provided a preventative approach to addressing these needs. It has influenced commissioners in the establishment of an East Sussex Total Communication Strategy, of which Kick Start is a key component. The current emphasis is on engaging with specific services around developing person centred approaches. We are working in partnership with local projects and focusing on specific community groups. We are confident that this will establish total communication in a far-reaching and nationally progressive way. Kick Start Communication has created a real energy and desire for change in East Sussex, and those of us involved are driven and committed to continue providing and developing this valuable service. Kick Start Communication has been extended to Brighton & Hove, West Sussex and other localities in the trust. There has just been a Total Communication road show in Brighton & Hove, and the topic is very much on their Learning Disability Partnership Board agenda. Hopefully these developments will produce similar outcomes for people with a learning disability and their families and carers.

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2010

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COVER STORY: COMMUNITY DEVELOPMENT
Our latest venture is a Festival of Togetherness, a specialised total communication road show. Although all our clients are welcome, it is targeted at people across our region with high support needs and those who are hard to reach due to limited communication / interaction skills. Our multidisciplinary team members, local organisations and enterprises will come along to share their knowledge, show their wares and offer a very interactive environment. We are having zones rather than stalls, which is more suitable for our targeted visitors. All zones will use all the senses (sight, touch, hearing, smell and taste). The sensory zone will include sensory cooking such as smoothie making, with additional trays for smelling, touching and tasting ingredients. It will also have sensory boxes with examples and free starter kits for making your own. The communication zone will look at objects of reference, intensive interaction, switches and environmental aids. In addition to a movement and music zone, a chill-out zone will include massage, aromatherapy and reiki. The outdoor space will have kite flying, a fire engine, a pony, art, a marquee, picnic area and live music. In the large sports hall Decoda will be creating a safe and interactive environment using their decodamaze, an inflatable everchanging environment of sounds and images, as well as their music gym and sensory igloo. Our aim is to make the whole event a model of good communication and togetherness. We too often see communication tools not being used, in the backs of cupboards, and people described as having ‘no’ language or no effective means of communicating, having things done to them rather than being offered ways to communicate. We want to get across that communication is a two-way relationship and will only be successful if the communication partners are using the same ‘language’. We also want to demonstrate how important it is to build relationships, to share experiences and to learn together. Framework 4 Change is helping us organise the event. This local organisation has been part of our previous Kick Start, holding stalls and workshops. They very much wanted to set up the Festival of Togetherness with us to embed work on total communication within their community way of thinking. Their representative Helen Zeida says, “Frameworks 4 Change works to create deep culture change which results in a shift from service to community thinking and action. The shift changes the perception of people who need paid support from that of passive recipient to active citizen.” We have thought very carefully about creating a place of welcome, joy, safety, exploration and learning for all our visitors. To ensure they can enjoy the day fully, we are providing changing facilities, showers, hoists, picnic blankets and a cafe. We also have a dedicated crew of helpers who are passionate about total communication. Their job will be to welcome and connect with the people who come to be with us on the day, supporting SLTP everyone to have a fabulous time. Helen Page is the Kick Start Communication Project Worker, email hpage105@hotmail.co.uk, and Viki Baker is Clinical Director for Learning Disabilities / Professional Advisor for Speech and Language Therapy at Sussex Partnership NHS Foundation Trust.

References

Editor’s choice

Department of Health (2001) Valuing people a new strategy for learning disability for the 21st century a white paper. Available at: http:// www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/ DH_4009153 (Accessed: 22 April 2010). Department of Health (2009) Valuing people now: a new three-year strategy for people with learning disabilities. Available at: http://www. dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/ DH_093377 (Accessed: 22 April 2010).

So many books, so little time! Editor Avril Nicoll gives a brief flavour of texts that have got her thinking.

Resources

• Decoda - www.decoda.org • East Sussex Learning Disability Partnership Board - www.eastsussex.gov.uk/socialcare/ adults/disability/learning/partnershipboard. htm • Frameworks 4 Change www.frameworks4change.co.uk/ • Intensive Interaction – www.intensiveinteraction.co.uk • Learning Disability Week – www.mencap. org.uk/page.asp?id=9879 • Strong Voices Big ideas (East Sussex Commissioning Strategy) –www.eastsussex. gov.uk/socialcare/policiesandplans/ adultservices/commissioningstrategies/ default.htm • Talking Mats – www.talkingmats.com

Sue Gerhardt argues that loving, responsive parenting in the early years facilitates emotional self-regulation, with life-long implications for communication and mental health. She explores the development of stress, and helpful and unhelpful learned responses. Although on first reading it seemed to lack hope, ‘Why Love Matters’ lays the groundwork for developing solutions. It draws on different disciplines, and much of the language used and techniques discussed are familiar to speech and language therapists. Can we take something from the assertion that it is time to give priority to relationships over goal-oriented behaviour? Why Love Matters (2004), Routledge, ISBN 978-1-58391-817-3 What can we do to become more attuned to the ethical aspect of our work? Following in-depth exploration using scenarios and expert responses, Richard Body and Lindy McAllister identify themes, all of which have practical implications. It helps to talk things through, negotiate roles and boundaries, become more aware of where the power lies in relationships and recognise the tensions between organisational, professional and personal values. Our clients also benefit when we pay more attention to the nuances of the language we use; depending on the context, the word ‘yet’ can do much to inspire or to induce despair. Ethics in Speech and Language Therapy (2009), Wiley-Blackwell, ISBN 978-0-470-05888-6 Editor Sue Roulstone dedicates ‘Prioritising Child Health’ to families who “have to fight for resources for the children” and “practitioners who are struggling against the odds to provide services”. Among the parents and practitioners writing in the first section, a children’s palliative care nurse bringing prioritisation issues into particularly sharp focus. The theoretical section contains a wonderfully thoughtprovoking contrast between a philosopher drawing on Marxist perspectives and an economist. The most important message is to be much more explicit about our decision making. Contrary to what we might think, with open debate public confidence will grow. Prioritising Child Health – Practice and Principles (2007), Routledge, ISBN 978-0-415-37634-1

REFLECTIONS • DO I KEEP THINGS SIMPLE WITH OPPORTUNITIES TO SEE, TRY AND LEARN? • DO I FIND WHAT IS ALREADY WORKING AND BUILD ON IT? • DO I REALISE THAT, WHEN COMMUNICATION IS CENTRAL TO POLICY, THE FUNDING FOLLOWS?

Do you wish to comment on the difference this article has made to you? See the information about Speech & Language Therapy in Practice’s Critical Friends at www. speechmag.com/About/Friends.

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SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2010

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