How do those who cannot communicate verbally talk to the outside world? Douglas Blane reports
A little bit of history was made this month when a machine opened a debate in the Scottish Parliament. At 5pm on May 7, MSP Nanette Milne pressed a button on a handheld device, which then spoke a few sentences about the anguish of people who have no voice.
"Sadly, in 21st-century Scotland, a significant number of our fellow citizens daily experience such desperation and frustration," it said.
Craig Gibson (right) is one of those citizens. A smiling 18-year-old at Corseford School, Renfrewshire, Craig has some speech, but his words are hard to understand. His mum, teachers and therapists at the Capability Scotland school for children with complex needs, can follow most of what he says.
But getting through to people outside this group is a struggle, one Craig would love to be released from. He wants what most of us take for granted - a voice. But he isn't going to get one. His local authority has decided not to provide him with a communication device, because he'll be leaving school soon.
"It's a shame," says Joanna Shannon, the school's speech and language therapist. "We would have had all this time before he goes, to teach him how to use the machine."
That expert guidance is vital. Today's augmentative and alternative communication (AAC) devices are powerful and flexible. But it takes time to access their full capability, and every child has different needs and abilities
At Corseford, Courtney Pollock, 16, has a device she operates as it sits on her knees. Plastic guide-holes on 13-year-old Steven Sweeney's machine help his finger to contact chosen sections of the touch-screen.
Owen Hunter, 14, has a large, wheelchair-mounted device that he operates with a green button beside his head. He demonstrates by moving his head an inch to the side to catch fleetingly highlighted on-screen sections. Once he has homed in on what he wants to say, a robotic, transatlantic voice intones: "My name is Owen. I live in Paisley. I like telling jokes to people and funny news from home and school. What do you call a cat that drinks lemonade?"
After a short pause, he laughs at the same time as he presses the image for the answer, which makes it hard to hear. "A sourpuss," he makes the machine repeat, and laughs again with his whole body.
Capability Scotland and the Corseford youngsters are taking part in a nationwide campaign to end "the postcode, age, advocacy and impairment lottery", which sees a few youngsters given a voice while the rest stay speechless.
"That's what the debate in Parliament was about," says Sally Millar of CALL Scotland and the Royal College of Speech and Language Therapists. "Only one in six of the 2,500 people who need a communication aid, gets it. Children fare slightly better than adults. But it's not uncommon to have their aids removed when they leave school.
"We badly need an AAC strategy that sets out minimum standards of service and delivers better-quality, equitable provision across Scotland."
There is a huge difference between that provision, as delivered by modern devices, and what can be done with older equipment, such as Bigmacks, with their brief, pre-recorded messages. One word epitomises that difference, says Ms Millar - language.
Children might be able to signal needs with pre-programmed messages, she believes. "But the ultimate long-term aim of education must be to provide them with true language as a tool for creative communication, for thinking, problem-solving, writing."
It's the distinction between basic communications and real language, she says: "To be linguistic as well as communicative, a system must offer the facility of sequencing and ordering words and phrases into longer and novel utterances. Mastering this is the single most important process of the child's education."
Important but time-consuming. As a child's learning grows, so too does the content of the device, explains Corseford social subjects teacher Theresa Brady - in terms of the range of topics and the flexibility of the messages each contains.
"At the start of each term, I identify the new words and phrases we'll be using, and the speech and language therapists then programme the words and the pictures that access them into the machines," she says. "So when I'm talking about Scotland in the Middle Ages, say, the children have already met the new words so they can use them and build on them."
A short, three-way conversation illustrates the potential when learner and device grow together in this way - as well as the scope for youngsters to adapt messages creatively during a conversation:
"When was your birthday?" Miss Shannon asks Courtney, who has had her device for 18 months. She quickly finds a response.
"My birthday is the fourteenth April," the device replies.
Did she have a party?
"You went to Palm Springs, didn't you?" Miss Shannon helps out.
"Yeah," Courtney says with her own voice.
Did she go on her own?
A pause for thought, then a quick scan for a reply: "My sisters' names are Abbie, Rebecca and Stephanie."
Her sisters went too?
"Yeah," she smiles.
As well as synthesising speech, AAC devices store and play back the children's choices of music and video, says Miss Shannon - and Courtney demonstrates with a burst of a Robbie Williams song. They can also, very usefully, handle environmental control. "The children can operate blinds, doors, windows and fans remotely. They practise in a special room here. It's all about life-skills - preparing for leaving school and living in their own place."
A smile and a nod from Steven show that he'd like to add something. After a short wait, while the framework guides his finger, he says through his device: "My name is Steven. Nice to meet you."
Nice to meet you, Steven.
"I was the sound guy for our school musical Beauty and the Beast," Steven's machine says. "I can open doors and special windows and work my DVD player and TV."
Can he open all the doors in the school? A big smile and a shake of the head. "The most important thing is that I can speak," his machine continues. "All people who need this help should get it, I think."
Owen agrees, through his machine: "My friend Craig needs a communication aid. But he's not getting one because he is leaving school soon. I don't think that's fair."
Augmentative Communication in Practice. Scotland 2003. http:callcentre.education.ed. ac.ukSCNIntro_SCAintro_ sca.html
The augmentative and alternative communication (AAC) campaign is still in progress and the outcome as yet is unclear. But in the 25 years of its existence, the CALL Centre has seen many changes in the education of children with communication needs, says Sally Millar, specialist speech and language therapist and joint founder.
The day after the parliamentary debate on AAC technology, Adam Ingram, the minister for children and early years, announced Government support for a national database of resources for pupils with additional needs. The intention is to roll it out in August.
"This is big news," says psychologist Stuart Aitken. "It changes the landscape of accessible print materials."
The database is being supported, said the minister, because of the findings of a scoping study, "Books for All", written by Stuart Aitken and Paul Nisbet - joint founder-member of the CALL Centre.
The small group, based at Edinburgh University, also includes two teachers and an information officer. But in future all that expertise will be accessed under a different name - CALL Scotland. "We got fed up with people from India thinking we're a call centre, and phoning up to ask for a job," says Nisbet.
"CALL now stands for `communication, access, literacy and learning'. We provide expertise and technology for children who have communication difficulties in the widest sense."
CALL Scotland works mainly with children who have no speech or hardly any, says Sally Millar. "That doesn't mean they are learning disabled - they might be very bright - but they just can't speak."
The latest technologies these youngsters can use are loaned out to schools. There is a marked decrease in demand for Bigmacks, and a growing interest in more sophisticated technology, such as adapted keyboards, note-taking devices and speech synthesisers.
"I go to the CALL Centre if I want to know what's happening across the country," says Jean Kerr, principal teacher at Corseford School in Renfrewshire, "if there's a need for research or if I want help with software or hardware.
"They do continuing professional development and will come into school to adapt equipment. They've an unusual mix of skills and they're good when you want someone to talk to, to come up with ideas."
One of the most effective of these ideas has been the Smart Wheelchair. "It's intended for children with severe and multiple difficulties," Mr Nisbet says. "It has bumpers, collision sensors and a speech synthesiser. We designed the electronics and made and sold 11 sets before teaming up with a company called Smile Rehab. They now manufacture them under licence, while we do the software.
"There's a lot of smart wheelchair research in universities, but this is the only one you can buy commercially."
Researchers sometimes miss the point, he says. "You're not trying to build a robot. Instead, you want something that supports and is controllable by the user. The smartest part of any smart wheelchair is the person. Even if they can't see or have severe learning difficulties, they're still a lot cleverer than any machine."
It's a philosophy that goes to the heart of CALL Scotland's approach, says Sally Millar - and of how that philosophy gets turned into action. "We are about technology, but we're about more than that. We provide a practical, hands-on service combined with research and development. We're in and out of schools. We know what the kids need and what staff and parents are asking for. We learn which technologies work and which don't.
"We do lots of things at CALL Scotland, and it's sometimes not easy - even for us - to see the thread that ties them all together. That thread is the children and their needs, as we have grown to understand them over the past 25 years."