Waiting for his time to come
Mrs Bird, not unreasonably, had expected her son's entry to the school to be straightforward. True, Jamie has Down's syndrome. But he had spent three happy terms in the nursery, lives around the corner, and has an older brother in the school.
Bourne School claims great commitment to integrated education. Its nursery was the first in the county to be funded for special needs places and Jamie shared his classroom assistant with Amber Webb, another child with Down's syndrome. On Jamie's statement of special educational needs, educational psychologists and others testified that he would benefit from continuing at Bourne, and had made progress and friendships in his time at the nursery.
But Jamie - and Amber whose entrance was also delayed - has been caught up in a game of brinkmanship between officers of the education department at East Sussex and the head and governors of Bourne School. At stake is East Sussex's bid to establish that it need not quantify the number of hours of support on statements. And at the root of that is a new policy which makes the partial devolution of special needs budgets to schools a top priority.
In April, East Sussex introduced a policy whereby funding for pupils with moderate learning difficulties, emotional and behavioural difficulties and specific learning difficulties should be delegated to schools. The new policy - an attempt to redirect the runaway train of special needs funding - was, claims the county, thoroughly aired with heads and experts before being put into practice this year.
But the train appears to have hit the buffers almost immediately. Parents of East Sussex children with Down's syndrome are alarmed that the authority is now refusing to specify on statements the number of hours of extra ancillary assistance or individual teaching that their children should get. "Without the hours," said one parent, "the statement is worthless. I might as well put it in the fire."
In the understanding of lawyer Sally Capper, education advocacy worker at the Down's Syndrome Association, East Sussex's failure to specify hours is contrary to the spirit - and the letter - of the 1993 Education Act. "The LEA, by failing to obey the law, is depriving the parents of rights," she says. The authority argues that the duty to "specify staffing arrangements" obliges them to describe the type rather than the hours of support needed. Legal aid is now being sought for the Bird family to bring Jamie's case to judicial review.
If families in East Sussex are unhappy, some local heads are no less so. John Kenward of Bourne Primary was one of the heads who supported the devolution of some special needs budgets to schools. He wanted a fund to enable him to shift resources around the school in response to pupils' changing needs. "It's much more flexible," he says. "The special needs teachers control some of the budget and can juggle on a daily basis if necessary."
But during the consultation period, Mr Kenward and some other heads understood that pupils such as Jamie - with expensive, long-term needs - would continue to be protected by central funding. It came as a surprise when most children with Down's were not. Meanwhile, East Sussex has retained central funds for other needy children, such as the severely autistic.
John Kenward argues that the amount he stands to receive under East Sussex's new funding formula for taking on children with needs as extensive as Jamie Bird's will not cover the cost of supporting them, and will wipe out smaller amounts of extra help currently being given to large numbers of other pupils with lesser needs. "The consequences are potentially disastrous," he says. "We felt we had to make a stand."
Paul Burnett, pupil services manager at East Sussex, makes a steady defence of the new policy. "What we're trying to do is provide schools with flexibility to adjust levels of provision if needs change," he says. "Part of the rationale is to ensure that resources are pumped into schools rather than central administration." He takes the view that the delegated budgets are sufficient.
None the less, an acrimonious six-month wrangle between the school and the LEA remained unresolved as term started. Four days into the new school year, Mrs Bird told John Kenward that she was bringing her son in, willy nilly, the following Monday. The authority stopped just short of directing the school to take the child and, for now, the money has been found in a compromise solution. But this will only hold good until March when some of the funding runs out. "After that, we're in uncharted waters," says Mr Kenward.
Parents, whether or not they involve themselves in the increasingly vociferous Down's Syndrome Association group in the area, fear that the welcoming attitude of heads has evaporated with the central funding. "Whereas in the past, " said one, "they were very supportive of parents trying to get extra funding out of the local authority, now, because it's coming out of their own budgets, there's definitely a change of attitude and in some cases they're saying they haven't got the resources." At a heated meeting of about 20 parents with Down's children shortly after term started, almost all reported that the attitude of heads had changed.
Meanwhile, the heads themselves will meet county officials later this term.
Events in East Sussex are being watched with interest by local authorities around the country. Already some are refusing to specify hours on statements; others do so only under duress or on instructions from the new special educational needs tribunal. But with most authorities robbing Peter to pay Paul, a legal judgment establishing that statements need not specify the number of hours of extra assistance would relieve some budgetary pressure. So, if the Birds were to lose their case and a loophole established, the effects could be widespread.
It would at least enable local authorities to shift the responsibility down to schools. "East Sussex is in danger of reversing the trend whereby mainstream heads were becoming increasingly supportive of integrated education," says John Kenward. "If the county wants a positive attitude, we have to be re-assured that we can meet the aspirations of parents."
Boosted by the 1993 Act, parental aspirations for children with Down's syndrome and other special needs are increasing all the time. Twenty-five years ago, children with Down's received no education at all from education authorities, only inputs from the health service. By 1993, a Guy's Hospital survey found that things had changed radically. Of the children they studied, 39 per cent of those born in 1985 had gone into mainstream primary schools.
Still, many more parents want mainstream places than are getting them. There is wide variation around the country. In the Portsmouth area, where the Sarah Duffen Centre at the University of Portsmouth provides expertise and training, especially with literacy, almost all primary-age children with Down's syndrome are in mainstream schools. (Sarah Duffen was educated in the mainstream, learned to drive a car and runs a baking business with her mother.) Parents tend to face particular difficulty at all transfer stages. "From infant to junior is difficult," says Sally Capper. "Then from junior to secondary is incredibly difficult. A lot of parents at that stage form the conclusion that their child won't be able to cope in a mainstream school anyway. On the whole, parents are quite realistic about their children. They don't want them to be uncomfortable and unhappy, but if they're coping socially they don't see why they shouldn't be taught in a mainstream situation."
In Suffolk, Madge Gibbs has five adopted children with Down's syndrome. She has watched two of them sit out their secondary years at home while the authority has denied them entry to the local school, and she has refused to send them to the 30-mile distant special school named on their statements. Now battle has been joined once again on behalf of 13-year-old Paul. Appeals both locally and to the Secretary of State have failed and the family is now going for judicial review.
To me it's not just about academic achievement," says Mrs Gibbs. "It's about preparing our young people for adult life in the community. I want them to have a quality of life where they can do some decision-making for themselves and I know that our four youngest are all capable of that. It looks to me as if the authority is judging them not as individuals but as a group, and putting the name of the disability first."
Sally Capper believes Down's children face particular prejudice. "People see the facial characteristics and make assumptions about their capabilities. " It is impossible to generalise about what children with Down's syndrome are capable of, but as more have had a chance in mainstream, attainments have been rising. This summer, for example, Louisa Chierchia, now aged 17, got three GCSEs in drama, technology and a science at Swanmore Secondary School near Southampton. Professor Sue Buckley and her colleagues at the Sarah Duffen Centre are much-visited by people from other authorities, interested in what they are achieving in Hampshire. "People tend to look at the videos and say - well they're the bright ones," she says. "But they can't all be the bright ones. It's more to do with the opportunities they've had to develop."
New research from the centre reveals the benefits of becoming literate; out of 14 children, seven learned to read and showed a much better understanding of grammar and vocabulary than the rest.
One generalisation that can be made is that children with Down's syndrome commonly have attention problems and need reminding of the task in hand. They often need classroom assistants and this, says Sally Capper, "seems to be an expense that local authorities resent".
The question of special needs funding is a vexed one. "The details are very convoluted," says John Wright of the Independent Panel for Special Education Advice. "But the underlying situation is quite simple. The Government is giving parents extra tools to make demands for special help, but not giving local education authorities the resources to meet those demands. The result is an increase in conflict."