Joshua's battle: one boy's fight for special schooling

A boy with a rare form of cerebral palsy has won the right to remain at a unique centre that caters for his needs. Hilary Wilce reports
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The Independent Online

Joshua Carter had seizures as a baby and was slow to develop. Then came a devastating diagnosis: cerebral palsy.

Joshua is now 12, and over the past dozen years his mother, Sara Carter, has fought vigorously for the educational provision he needs. Like many parents of children with special needs, she has found herself constantly struggling with a system that often seems more concerned with saving money than providing for the children it is supposed to serve.

Widespread frustration about this boiled over recently when Tony Blair was angrily confronted by Maria Hutchins, the mother of an autistic child. And David Cameron, the Conservative leader, who has a four-year-old son with epilepsy and cerebral palsy, has come out fighting for the retention of special schools and for a system that caters for the individual needs of dis- abled children.

But what makes Sara Carter's case special is that she has not only succeeded in getting tailored secondary school provision for Joshua, but also for his three classmates, and possibly other children. "I didn't scream and shout, but I made sure they knew I wasn't going to go away," says the 40-year-old with a background in marketing and a core of pure steel.

Joshua has difficulties with learning; he sometimes uses a wheelchair and sometimes walks with a frame. From the first, there were complications over his provision because he lives in Buckinghamshire for education services, but in East Berkshire for health provision. The buck went back and forth and "he never got the services he should have done", says Sara Carter.

However, she heard, from other parents, about a Hungarian-based education system called conductive education, that retrains the central nervous system of children with motor disorders, and started to drive Joshua twice a week to Worthing, West Sussex, to a school where it is practised.

When a specialist there told her that her son had the rare ataxic form of cerebral palsy, which makes sufferers particularly unsteady and shaky, and that the only specialist ataxia group was at the Peto Institute in Hungary, she packed her bags and embarked on several gruelling years of living for months at a stretch in Budapest, with Joshua and his younger brother, Louis. "I'll never forget arriving there in the middle of winter, knowing no one, with a foot of snow on the ground."

It was worth it. Within two and half years Joshua had made huge progress. "I came back to the Institute one afternoon and there was this huge group of parents standing by the stairs and when they saw me they all said 'Ssssh' and I looked and there was Joshua walking along the corridor!"

But when he returned to England he languished in a special school class of a dozen assorted children, "two of them severely autistic, a child with cerebral palsy who was tube-fed and lying down, and a girl with Down syndrome".

For a time, Carter continued to take him back and forth to Hungary. "It cost a fortune, but we did some fundraising and remortgaged our house twice."

However, she knew he could not stay in the school in England that he had been assigned to, so she contacted the PACE Centre, in Aylesbury, a specialised charity which offers conductive education to between 55 and 65 children, aged up to 11, 85 per cent of them with cerebral palsy.

This centre was started 10 years ago, after a local charity began to offer short programmes built around the pioneering work of Hungarian physician Professor Andras Peto. "It is based on the idea that the central nervous system has plasticity. So, if the M25 is closed, you say 'Well, let's go another way,'" explains Heather Last, the centre's director. Peto's ideas caught the popular imagination but sank out of sight, partly, she says, under the weight of too many articles trumpeting them as a "miracle cure", "and also because they did not fit the existing system".

"We have teachers, occupational therapists and physiotherapists, all very well-trained, and a conductor, who delivers this kind of education, isn't any of those. A conductor is looking at the child as a whole. It's about learning how to learn, and learning includes everything - acquiring cognitive skills, acquiring social interaction skills, acquiring personal independence, and acquiring mobility."

At the centre, children in bright, specially equipped rooms are helped to sit properly, improve their balance, speak more clearly and develop independence. Teachers, physiotherapists and speech and language therapists work together, following the same programme. Rhyme and rhythm are important, as is personalised help - the staff-pupil ratio is high - and programmes are meticulously crafted to weave all the children's needs together.

As a small group of four- and five-year-olds follows a story, the children are also learning how to sit up straight and shift their weight from one foot to another - an essential skill for walking and undressing.

Older children follow aspects of the national curriculum, while special handles on their desks allow them to prevent their arms flailing about, and the team approach means that problems are quickly identified and addressed. "Someone might say, 'Oh, I see why he can't do that,'" says Last. "It might be something to do with hand function. So they'll say, 'I need that piece of equipment modified.'

"It's completely different from a child being taken out of the classroom for half an hour a week, and the therapist having no control over what happens until the following week."

The centre is popular, and initially told Carter there was no place for Joshua. "But when I told them about him and what we'd been doing they just said 'Bring him anyway. You've worked so hard!'"

However, places cost up to £34,000 a year, and although local authorities are only charged three quarters of that (£400,000 has to be raised annually to make up the shortfall) they are still expensive. To preempt any quibbling about funding, Carter toured other special schools, asking if Joshua would fit in. All said no.

"I took Josh with me when I went to see my education officer, so she could see how he was. He was crawling around everywhere and she was a nervous wreck. People make decisions all the time about these children they've never even seen!"

Joshua has now had five happy and productive years at PACE. He says he likes coming to the school and seeing his friends. His mother says: "If he hadn't come here he'd have had bad posture, which would have meant him getting crooked, and his digestion wouldn't have worked well. He wouldn't have been able to feed himself or speak properly. Now he knows how to sit with his feet on the floor, and he's starting to figure things out for himself.

He can plan and sequence events and his expectations are different, too. He knows if he wants something done he'll have to get up and do it himself." However, he should have left a year ago. But there was nowhere suitable for him to go. So Carter set to work.

First she invited the heads of all the secondary special schools that she knew the authority might suggest for Joshua to come in and visit PACE. Seeing the specialist provision in action, they agreed they could not meet his needs.

Then she gathered paper ammunition. She discovered that Buckinghamshire had been criticised by school inspectors for not offering enough in-county provision for its special needs children, and that data collected by the South Central Regional Inclusion Partnership, on the delivery of services to vulnerable children, had also raised questions of provision. In addition, the national Every Child Matters agenda was emphasising the need for local services to meet children's individual needs.

So she came up with the idea that the authority should use the spare space in one of its special schools to set up a pilot conductive education project for secondary-age children like Joshua. PACE would provide the staff, the children would be on the roll of the special school, and the local authority would supply funding. It would be, she pointed out, much cheaper for them than paying for Joshua to go to a distant boarding school, which was the other alternative.

"Basically I said I can take you for this amount, or I can take you for half the amount. It took 18 months for them to come back to me, but from September, Joshua and his classmates, and possibly another child from Hertfordshire, will be an independent group in their own classroom in the school. We are all very excited!

"I am hell bent on flagging up the fact that these children have to go somewhere. A lot of children have gone on from the PACE centre to schools that weren't appropriate, and if children don't carry on with this system, they can revert and get stiff again. Butonce the idea was presented, the local authority was very good about making it happen."

The PACE Centre is planning a major expansion. As well as extending its work to secondary-age children, it is expanding outreach and training and planning a bigger centre.

To do this it needs to raise between £2m and £3m."But we have a deep-seated philosophy, which is to do with belief in a child," says Amanda Richardson, the head of the centre. "It's a belief that a child is going to learn and going to be able to take responsibility for his or herself. I came from an educational background, and when I came to PACE it opened up a whole new way of looking at things."

"The core of what we do is all about motivating children to do things for themselves," says Last. "It's the 'I can do it' attitude, and the children here acquire it, and then they start to encourage one another. They'll say, 'You'll never walk like that. You need to get your bottom in!'"

The centre hopes greater prominence will help it offer a blueprint for mainstream integrated provision, as health, education and social services start to work more closely together.