British parents of children with Down syndrome say they feel unwelcome in schools

From The Guardian in the UK:

For the last nine years, Tim has battled for his daughter, Sally, to attend local - rather than special - schools and for her to receive the help she needs. Sally, 14, has Down's syndrome. It has meant entire nights on the computer preparing for two tribunals against the local authority as it denied Sally occupational therapy and then threatened to cut her speech and language therapy.

It has meant ignoring Sally's more reluctant teachers who have told him his daughter's learning has "plateaued" when he can see at home how her reading is improving.

And it has meant blocking out the comments of some parents in the playground who have questioned why the "Down's syndrome girl is at this school".

Until yesterday, it was all worth it.

Sally's school friends have helped her to "grow up normally", Tim says. They have often picked her up on the way to school and assisted her on to the bus. They have invited her to their sleepovers.

Moreover, Tim is convinced that academic expectations for Sally have been much higher in a mainstream rather than a special school, and that she has achieved more as a result.

But the battle is now over. Tim and his wife Susan, who live in London, say they have "lost the will to fight any more" and will most likely send their daughter to a special school next year.

Her teachers are not preparing lessons at the right level for her, Sally's parents say - although they acknowledge that this is often not the teachers' fault, as they haven't had the right training.

Sally is now sometimes left alone at lunchbreak because her friends are growing up faster than she is and the school refuses to pair her off with a "buddy".

"We feel we are abandoning our child and letting her down," Tim says. "We've always thought the best thing for her, and for society, was a mainstream school. We've felt our moral crusade for inclusion was a fight worth having. But we are facing increasing numbers of people in education who are holding rank in opposition to us and we are losing the will to fight."

Sally, he says, will know exactly what is going on when she changes schools and, as a "bright, tuned-in little girl", will feel she has let her parents down.

Children with Down's syndrome started to attend mainstream schools in the UK in 1981. They were given a right to an education in schools only in 1971 - before which they were deemed "uneducable".

Why, Tim says, after all these years, does he have to opt for a special school for a child who has done "pretty well" in mainstream schools? "Why is it so bloody difficult?"

He is one of a growing number of parents to ask such questions. In the last two years, life has got tougher for many parents with children who have Down's syndrome and who are in mainstream schools, the Independent Panel for Special Education Advice (Ipsea) has told Education Guardian.

The organisation, which gives legal advice to parents whose children have special needs or disabilities, says three times as many children with Down's syndrome have been refused a statement of special educational needs in mainstream schools this year compared with last.

The statement sets out a child's needs and the support a child should have. Local authorities and schools then have a statutory duty to provide that support. The statement is reviewed annually.

Jane McConnell, chief executive of Ipsea, says local authorities are either not issuing statements - and instead delegating funds for special needs to schools - or are making the wording of statements so "blurry" that the support the child is entitled to is open to interpretation.

"When the local authority is challenged, they often back down because it is obvious that a child with Down's syndrome needs a statement," McConnnell says. "But this can be an exhausting process for parents." A study by Birmingham University shows that the number of statements has declined steadily since 2001.

Gillian Bird, director of education and information at Down Syndrome Education International, which is based in Portsmouth, says more parents are now choosing special schools over mainstream ones than five years ago.

Bob Black, education information officer of the Down's Syndrome Association, agrees. "Many parents are transferring their children from mainstream primary schools into special schools, particularly for secondary school," he says.

There are many schools across the country that include children with Down's syndrome very well, Bird and Black say. But an increasing minority of schools are now showing a reluctance to take on pupils with Down's syndrome. The fight is becoming too tough.

Bird says more children with the chromosome disorder are being told they don't need speech and language therapy. This is nonsense, she says: it is well known that young people with Down's syndrome have speech and language problems into adulthood.

Ensuring that occupational therapy is on a child's statement has become "increasingly difficult", says Black. And there has been a growing reluctance from teachers to adapt lessons to cater for children with Down's syndrome.

"Schools are digging their heels in," Black says. "We are getting the sense that schools, already overburdened with work, are feeling they have enough on their plates and don't want to make adjustments for this group of children as well."

Black blames, in part, remarks made by Mary Warnock, the architect of England's special needs education system, four years ago. Warnock said pressure to include pupils with special needs in mainstream schools had caused "confusion, of which children are the casualties". She called for a fundamental rethinking of the principle of including children with physical or emotional difficulties in mainstream schools. The ideal of inclusiveness "springs from hearts in the right place", she said, but moving pupils out of special schools had left a "disastrous legacy".

Warnock's remarks confirmed it was OK for headteachers and schools "in leafy areas, who want an easier life" to be reluctant about inclusion, Black argues.

Charlotte Woodbridge knows all about this sort of reluctance. "I feel like a warrior parent," says the former teacher, whose son Jamie, 10, has Down's syndrome and is at the local primary school in north London. "I have a degree and am articulate and I have struggled with the system." (Both are pictured.)

Woodbridge won a tribunal last month, which has guaranteed that her son's school has a Down's syndrome adviser who visits at least four times a year. "It's been an uphill battle to get each of his teachers to go on a one-day training course and to arrange for a specialist teacher for him," she says. Woodbridge is thinking about secondary schools for Jamie for September 2010, but she knows of no other child with Down's syndrome in her area who is attending a mainstream secondary. "I'm absolutely sure that his reading and general behaviour are much higher than if he had gone to a special school," she says.

Mary would be happy with her son's school, a local primary in London, were it not for the fact that the teachers make it obvious they don't want David, six, there, she says. "It's a great school and we don't want to take him out of mainstream education. They keep calling me in to tell me that he is not in class because he can't keep up. I know they don't want him there. But I want him to know the local community."

A study for the Down Syndrome Educational Trust in 2002 showed that children with the syndrome develop on average five to six years faster in spoken language and literacy in mainstream schools than in special schools. The disadvantage of mainstream schools was that they were less likely to have "special friends, boyfriends or girlfriends, and a social life of their own in their late teens".

The government-commissioned Lamb inquiry into special educational needs and parental confidence will report in July, and a private member's bill on special educational needs was read in parliament last week. But not even the MP who is taking forward the bill, John Bercow, is confident that it will become legislation.

And Black worries that the Lamb inquiry could replace statements with something "unpleasantly wishy-washy that will set us back 20 years".

The proportion of children with Down's syndrome in mainstream schools has always varied by location. A study by Leeds University in 1997 showed that in some areas of the UK, 67% of five- and six-year-olds with Down's syndrome, and 25% of 14- to 16-year-olds, were in mainstream schools, while in others, 28% of five- and six-year-olds and no 14- to 16-year-olds were.

Black estimates that four years ago, a fifth of children with Down's syndrome who were in mainstream primary schools transferred to mainstream secondary schools. He thinks the figure is closer to a third now. But the slow upward trend may well now be starting to reverse.

• Some names have been changed.