More than words

For years Ben was frustrated because he was unable to express himself, but communication aids have helped to transform his life and enabled him to gain more independence. Suzanne Fry reports:

Ben Treadwell was born a healthy baby but when he was slow to learn to walk and failed to speak his parents, Harry and Dodo, knew there was something different about their son. It was not until Ben was five that he was finally diagnosed with a learning disability, which was suspected to have been caused by a case of the measles when he was five months old.

“For two years everyone said Ben was just a bit late developing but as his mother I knew something was wrong,” says Dodo. “Then a specialist came to see him and it was the first time anyone had asked me if Ben had ever had measles because the illness could have damaged his brain. It had never even occurred to me that the illness he had as a baby could have had a long-term effect.”

Frustrated by not being able to communicate, Ben became disruptive and as he grew in strength and size his behaviour became unmanageable. Reluctantly, his parents decided to place him in a residential care home in Ringwood, Hampshire, which was run by the Camp Hill Movement Foundation – an initiative founded on the concepts of education and social life outlined by anthroposophist, Rudolf Steiner.

At 19, having been unable to qualify for employment within the community of the foundation, Ben moved to Lympe, a village in Kent, to live in a residential care home run by Hft, a charity supporting people with learning disabilities.

Using communication aids

Once he had moved, Hft organised for a speech therapist from Kent County Council to work with Ben to try to develop his communication skills. Over time a better understanding was gained of the challenges Ben faced and it was recognised that while he could often understand what he was being asked he was unable to annunciate any words to communicate his answers.

Ben was taken by his speech therapist to a London teaching hospital for an assessment and it was there that they first learned of a programme being run by Lancaster University that was utilising communication aids primarily to assist people who had suffered strokes. As part of a spin-off project Ben was provided with the prototype of a device called an Orac.

“The Orac machine was a life saver,” says Harry. “Ben used to struggle to express himself with grunts and then blow out his cheeks in frustration because he was unable to be understood. Since having the Orac Ben’s behaviour has improved beyond recognition and without it I truly believe Ben would have had an unhappy life. There is a strong possibility he would have become more disruptive the older he became simply because he was frustrated that he was unable to express himself.”

The Orac has a number of keys illustrated with a symbol, which when pressed can say a pre-recorded word or phrase. To trial its suitability, initially just 36 keys on the machine were programmed with recorded messages, which Ben was able to understand and use straight away. Delighted by this and keen to maximise the benefits of the communication aid, Ben’s brother Timothy made recordings for each button.

Dodo says the Orac made a real impact and in particular made it easier for the family to keep in touch over the phone between regular visits.

“Ben having a communication aid has made a world of difference,” says Dodo. “Previously he used to communicate by pointing. As his mother I could generally find out what he was trying to say but other people could not necessarily understand. We speak to Ben three times a week on the phone and before he had the machine to help him communicate it used to be a terribly one-sided conversation. The Orac meant we could ask questions which he could answer by using the machine.”

Moving with the times

Ben has used the Orac extensively but more recently Hft support workers at the home where he lives have worked alongside the local authority’s community learning disability team to explore the possibility of introducing a new, more advanced portable communication aid. The machine, called Vantage, is operated by using a touch-screen display to select illustrations on a variety of subjects to say recorded words or sentences. With a wider range of options to choose from and the ability to upload photographs that are personal to the user, it was hoped the equipment would increase the vocabulary Ben had available to him and enable him to have more independence by empowering him to make more choices.

To support the introduction of the Vantage, Nicola Bonfield, service manager for Hft, organised a training session and wrote briefings for the staff at the residential care home where Ben lives to teach them how to use and programme the device.

“I think it is really important to move with the times and investigate new avenues to ensure we are able to continue to provide the best possible level of care for the people we support,” says Bonfield. “The Orac is a good communication aid, but it is limited, which is why we were keen to support Ben to explore other options.

“He took to the Vantage in no time at all and it’s great because it has enabled him to make more choices by giving him an increased vocabulary. Previously we could ask Ben what he would like for dinner and he could choose from fixed options, now he can say exactly what he would prefer. As a result it has enabled him to have more independence because he is able to communicate more freely and the staff supporting him can be confident that they have understood exactly what he is asking for.”

The Vantage has been uploaded with pictures of Ben’s family as well as the staff supporting him and Bonfield says they have noticed changes in his behaviour, with Ben appearing more relaxed and less frustrated at being unable to express himself. Hft staff have also been working to help enhance the regular communication Ben has with his family in West Sussex by supporting him to make video calls using Skype.

“We have always kept in close contact with Ben; at least once a month Hft support staff bring him on the train to stay with us and we speak regularly,” says Dodo. “What is wonderful about using Skype is that we can see Ben and he can see where we are and know that we are at home. As we get older the harder it is becoming for us to travel for his annual review but having Skype has meant we are still able to attend and take an active involvement in his support.”

About the author

Suzanne Fry is public relations manager at Hft.

This feature first appeared in the June/July issue of Learning Disability Today magazine. For more features like this, as well as opinion columns, news and research, subscribe to the magazine today. For more information click here

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