Children should be seen and not heard” is a centuries-old saying but it remains the reality for thousands of children in the UK today.
According to a recent report from disability charity Scope, there are 1.5 million children and adults in the UK with some form of communication impairment with potentially 600,000 unable to communicate without equipment. Various communication aids, such as signing and symbol systems, have been on the market for some time. Technology that talks, however, is comparatively new – and so there has been no funding stream.
In 2002, the government set up the Communication Aid Project (CAP) for school-age children in England to address this. The four-year project had £20m funding. Regional assessment centres and charities put in bids for the money to local authorities to provide assessments, equipment, and training for teaching staff, children and their parents on using the equipment. CAP benefited 4,100 children.
During this period, local authorities were also meant to be drawing up plans for providing support and training at a local level when CAP finished. But, while some continue to put money into equipment and multi-agency teams to provide assessments and on-going support, in other areas there is still undignified squabbling between social services, education and health about funding responsibilities.
The issue is exacerbated because of the lack of regional centres specialising in communication aid provision. The ACE Centre Advisory Trust has two such centres in Oxford and Oldham, both of which were involved in CAP.
Now this funding has ended, the government believes these specialised centres should be signing service level agreements with local authorities. But that’s easier said than done if local authorities are reluctant. And, without funding to sustain and expand these centres, it will become even harder to ensure that children and adults receive their much needed aids.
Caroline Gray, director of the ACE Oxford centre, says: “We see children who haven’t had what they need and it’s a real issue. They need equipment as early as possible.
“If you have a child who is very disabled, things like feeding and dressing take a long time and it can be easier for the parent to do everything for the child, who then becomes passive. The quicker you can encourage a child to make and communicate their choices, for example the clothes they want to wear or the food they want to eat, the more hope there is.”
With choice comes opportunities. “We’ve been working with an amazing girl since she was four,” says Gray. “She’s been in mainstream school and has passed 10 GCSEs at grade A. She is now working on her A-levels and wants to be an astrophysicist. Without the technology she would never have been able to do this.”
It is these opportunities that Jenny Herd wants for her nine-year-old son Adam, who cannot speak because he has athetoid cerebral palsy.
“When you have a physically disabled child, the first therapy you are offered is physio,” she says. “Communication seems to come quite a long way down the line. People worry first that their child won’t be able to walk. But that’s the least of our worries. Not being able to talk affects everything,” says Herd.
Adam had his first communication aid when he was two, paid for by the health authority following an assessment at ACE’s Oldham centre. But things didn’t immediately run smoothly. Adam has trouble moving his hands and arms so found it hard to press the buttons on his communication aid. So his parents had to work on the aid’s design and the number of words it used.
Adam had a new communication aid last year paid for by the tail end of the CAP. But because it can’t be mounted on his wheelchair it has to stay at school. This means he has to sign or use a communication book at home, so basically has to choose between communication and mobility – although, thankfully, a new wheelchair is on its way.
Herd points out that being assessed and then getting the equipment is just the beginning. “If there is no support network in your area you are likely to fail because there is no one to help the school or you with the equipment. It’s a very unusual parent who could do that all on their own. It needs to come with ongoing training and support.”
This is verified by research published by disability charity Scope this week which reveals that 64% of respondents to its No Voice, No Choice survey needed someone else to programme their communication aid for them. Responsibility for programming fell often to family members, even though only just over half had been trained or knew how to use them.
Adam is lucky because his father works in IT so is able to provide the specialised support that is needed for his son’s computer, which has a joystick and a word-prediction programme. The family is also fully supported by the mainstream school that Adam attends even though he is the only disabled child there.
Herd says: “If a child makes noises rather than talks, people think there is nothing going on in their head. That’s why having kids like Adam in mainstream schools will hopefully show that, just because they can’t walk or talk, that isn’t the case.”
For Adam, the communication aid has made his life better: “I can say things out loud and use word prediction,” he explains. This means he can call his friends on the phone and ask them if they want to play. It also means he can take part in lessons at school by saying the answers, asking questions and doing the work.
Before he had a communication aid, Adam used to get upset when people didn’t understand him. Herd knows of one young boy with cerebral palsy whose behaviour was becoming challenging because of his frustration at not being able to talk. But instead of being referred to a speech and language therapist his parents were told he should see a child psychiatrist.
“This may involve a relatively small number of children, but there are high cost implications [of not providing communication equipment],” Herd warns. “The long-term benefits are that they can be educated to a level where they are self-supporting, whereas if they are left to develop behavioural problems they could end up in residential care.”
Herd is under no illusions that Adam will ever be able to live on his own. “But independence doesn’t mean being able to do it all for yourself it means having the means to get others to do what you need. Adam will be able to live independently with personal assistants who help him and that can only be achieved by having a method of communication.”
Hopes are now pinned on the recently announced independent review into the speech, language and communication needs of children and young people supported by the Department for Children, Schools and Families and the Department of Health, and led by Conservative MP John Bercow. Bercow will hand his final report to the government in July 2008.
Bercow says his task is to formulate practical proposals for improved services. “The litmus test of such proposals is that they tackle the problems and boost the prospects of the children and young people who need our help,” he says. “I am determined to pass that test.”
Then it will be up to the government to walk its talk.
Scope’s Communication Aid Provision review of literature
This article appeared in the 15 November issue under the headline “Speak easy”