Analysis: The fight for the right to be heard

But access to technologies that would allow them to talk is patchy, prompting a call this week from charity Scope for ringfenced funding, reports Cathy Wallace.

When 11-year-old Connor is hungry, he can't tell his mum Corinne Boyle that he'd like a sandwich. Instead, Connor, who has severe cerebral palsy, must communicate using body language and gestures.

Connor's only means of verbal communication is a voice-simulation device called a Big Mac, which stores a 20-second message activated when the device is pressed.

"When Connor hits the button, the message I have recorded is 'mum I need you now'," Boyle explains. "But it's not really communication - he might want to say 'I want my brother'. By recording that message I have already narrowed his choices."

The scale of the problem

Disability charity Scope today (5 September) published Communication Aid Provision, a report calling for ringfenced funding to provide communication aids. The funding should provide equipment, training and support and should be tied specifically to the person with communication support needs.

Abigail Lock, parliamentary affairs manager at Scope, says: "It has to be a statutory requirement. It's a human rights issue - people have the right to free speech but some people require equipment to enable them to access that right."

Scope estimates there are more than 136,000 children and young people in the UK with a communication impairment, and 124,000 of these would benefit from some form of communication aid.

As basic as the Big Mac is, it is preferable to no communication aid at all, a problem more and more children and young people with communication support needs now face following the end of the government's Communication Aid Project (Cap).

Cap ran from 2002 to 2006 and provided £5m a year for expert assessment, communication equipment and training for more than 4,000 school-aged children, in addition to any local provision. A number of centres of excellence were developed but, for some local authorities and primary care trusts, it was an excuse to ignore the need for local provision altogether.

Lock says: "Cap was a short-term project. But some local authorities didn't do anything to put provision in place when it ended. It was applied differently in different areas and there were situations where local education authorities would insist the equipment could only be used in school."

The actual number of children and young people with communication support needs is not known. "Figures aren't kept centrally, it's down to the local authority and primary care trust to keep them," Lock explains. "In some cases the figures just aren't recorded. We are talking about a relatively low incidence, so it is easier to ignore these people - after all, without help, they cannot complain."

She continues: "I don't like the term 'postcode lottery' but that is the reality. In some areas of the country there are specialist organisations, but in others nothing.

"I recently spoke to a parent who has no idea where to go for support. The primary care trust and local authority have turned their backs on him. His son, who is nine, is self-harming because he's so frustrated, and the parents feel they have failed because they can't get him this equipment."

Boyle knows only too well the problems of accessing support for Connor. "In the past four years we have gone through five or six speech and language therapists," she says. "They take a few months to get round to seeing Connor, then they need time to assess him, by which time they have moved on and the next one has arrived."

Ironically, Boyle says, communication between professionals also leaves something to be desired. "Connor has a hearing impediment but the speech and language therapist doesn't contact hearing aid services," she explains. "In business, you'd have these two people discussing the problem. I'm sick of having to divide Connor into segments. It frustrates me to have to justify why communication is so important."

Working in partnership

Scope has just announced a three-year partnership with BT to help provide communication equipment and undertake more research to find out the actual number of people in the UK with communication support needs.

Adam Oliver, head of the project at BT, says the partnership was inspired by a meeting with 21-year-old Natalie Sides, a student at Scope's Beaumont College in Lancaster. She now benefits from the prototype Wheeltop Project communication aid. This enables Sides to speak, text and email, which she says has changed her life.

Boyle meanwhile is hopeful more government funding is in the pipeline: "By having Gordon Brown in power and David Cameron in opposition, things might change," she says. "They both have disabled children. The bottom line is, it's a funding issue. If I want more professional assessment I get told Connor has already had this much time and money invested and money has to be divided between all the children. Connor has adapted very well to communicating non-verbally but I know there's a person in there just trying to get out."

COMMUNICATION AIDS

- Communication impairments range from being unable to speak to developmental and language disorders such as stammering, cleft lip and palate, dyslexia and learning disabilities.

- Communication aids range from basic letter boards and flipcharts to high-tech electronic voice output communication aids.

- The cost of providing communication aids ranges from £10 to more than £9,000.

- Scope warns that many centres specialising in communication aids are under threat now the Communication Aids Project has ended.

- www.scope.org.uk.