Edinburgh model is 'exemplary'

30th January 2009 at 00:00
With an increasing number of children with Down's syndrome in mainstream primaries, one authority is tapping into special school expertise.

The newspapers were bursting with optimism. It appeared the UK had entered a more tolerant and inclusive era. "Down's births increase in a caring Britain," said the Times.

"Parents appear to be more willing to bring a child with Down's syndrome into the world because British society has become increasingly accepting of the genetic abnormality," reported the Independent.

A BBC Radio 4 documentary broadcast last year had got it wrong, however. Although the number of children with Down's syndrome had increased each year, as they reported (from 594 to 749), the rise was not due, as they claimed, to more mothers choosing to continue their pregnancies. There were simply more Down's syndrome foetuses because more women were having children later in life.

The increase in Down's syndrome children, coupled with the new presumption of mainstream education, means schools are welcoming more of these children through their gates than before.

In 2006, Edinburgh City Council decided to see how the youngsters were getting on, and hired teacher Isla Anderson to investigate. She found that the children in mainstream primaries were happy, but their full potential was not being realised, so the council made her responsible for Down's syndrome support within visiting teaching and support services. The result has been an award-winning service that is described by Down's Syndrome Scotland as "exemplary".

"We are aware that teachers in training are not taught how to teach children with Down's syndrome," says Pandora Summerfield, director of Down's Syndrome Scotland.

The charity offers teacher training but admits it is "only scratching the surface". It also tends to be reactive, not proactive, which is why it would like to see the Edinburgh model introduced across Scotland.

"Occasionally, we help a school prepare, but mostly a child arrives, there are problems, then the school phones," she says.

In Edinburgh, it was the same story; there was no preparation for schools receiving a child with Down's syndrome for the first time. Support ended after nursery.

When Ms Anderson carried out her research, she found class teachers felt they lacked the skills and were "desperate" for practical and formal support. They also felt guilty because curriculum pressures limited opportunities to work directly with the child.

Learning assistants were often playing too much of a role in a child's life, she said. Every child with Down's syndrome is supported full-time. The high-level input is necessary because children with Down's syndrome have a tendency to wander off and can also be stubborn and unpredictable, she explains. But without training, the support could have a negative impact.

The children frequently suffer from congestion. Ms Anderson found many were not even being encouraged to blow their own noses; the learning assistant was doing it for them. "It's all about life skills," she explains. "The children must make mistakes, because life will be full of mistakes."

Other pupils often considered the child and the learning assistant to be something of a double act. "It's important children in the class see the adult support for everyone. What other child would have an adult plastered to their side?"

In some cases, Ms Anderson found the learning assistant and child had been working together for years, creating a dependency. That, however, was three years ago when there were 14 children with Down's syndrome in the city's primaries. Now there are 23. Today, in Edinburgh, support to ease the transition into primary begins in nursery, six months before entry into P1.

Ms Anderson gets to know child and parents, and trains the nursery staff to help prepare the child for primary. They introduce table-top tasks, emphasise what good sitting is - children with Down's syndrome have a tendency to "flop", she explains.

Gradually, they wean the children off the freedom they have been used to in nursery, getting them used to the idea of following someone else's agenda. "In P1, the hardest thing for them is sitting listening to all this language when they don't necessarily understand everything."

Three or four months before the end of nursery, the child goes with a small group to visit their new school. Beforehand, they look at photographs and a social story is created. "It's during transitions that the behaviours show themselves," says Ms Anderson. "It's about preparation for every situation."

Teachers and learning assistants due to receive a child with Down's syndrome come together for their first training session at the end of the school year, in June, in preparation for the child arriving in their classroom in August. They receive a further four half-day training sessions after the child is ensconced in primary. The Link Group, as it is called, holds its sessions in special schools where all the expertise is on hand. This year, Prospect Bank has been playing host.

"Teachers and their support staff are offered training from speech and language therapists, occupational therapists, and are given the opportunity to observe special needs teachers, share their ideas and see the resources used."

The meetings also give the teachers the chance to meet colleagues who are teaching a child with Down's for the first time. And the pupils attend so they get to meet other youngsters with Down's syndrome. "Often, children are the only pupils with Down's syndrome in their school," says Ms Anderson.

By the end of the training, teachers and learning assistants will know basic signing to help them communicate (children with Down's syndrome often have poor hearing and minimal verbal communication). They will be aware that they are visual learners and will have been pointed in the direction of useful resources.

The occupational therapist will have explained that children with Down's syndrome tend to have poor fine-motor skills and muscle tone, which affects their ability to write. And the speech and language therapists will have explained their role, working to improve verbal communication and memory, and the importance of reinforcing sessions in the classroom.

Learning assistants in particular will have been trained to run the Therapy Inclusion Project, where they work on building upper-body strength with small groups of children who require it, including the pupil they are supporting. They are also given the confidence to take the class, to allow the teacher to work directly with the Down's pupil.

"Teachers and learning assistants are to be commended," says Ms Anderson. "They follow up suggestions and work very hard in making inclusion successful".

The training ends with a teddy bears' picnic, to which parents are invited. The strategies parents see staff using can be helpful at home, she says, and eradicate unfavourable views of special schools.

"For some pupils, as they move through primary school, mainstream may not meet their growing needs. If parents have an idea what facilities are available, it makes decision-making much easier."


Sophie Jones, 6, is brandishing a paint brush in her right hand, gazing intently at the painting taking shape before her. Such is her concentration she forgets about the sponge letter covered in paint in her left hand and absentmindedly puts it to her head, leaving behind a vague "M" in her hair, which could have been considerably more legible had it not been for Joan Hague's intervention.

Mrs Hague is one of three learning assistants who share responsibility for supporting Sophie in P1 at Davidson's Mains Primary in Edinburgh.

"We don't want to create a dependency," explains depute head Julia Higgins. "This also makes sense for practical reasons like absence, because more than one person knows Sophie."

P1 teacher Fiona Kay has been teaching for over a decade, but Sophie is her first pupil with Down's syndrome. The training organised by Isla Anderson (see below) has been very useful. "We all went to the training and all got the same message," she says.

The training gave Mrs Kay the big picture, she feels. Now she knows Sophie, she can see where she differs from the stereotype. "She is very much an individual," she says.

In preparation for Sophie's arrival, the bar on the classroom's fire exit was lifted out of reach. Mrs Kay also bought a bean bag so that, if Sophie was ever tired, she had somewhere to relax. And a corner of the classroom is dedicated to her. There, she keeps her picture timetable, put together every morning so she knows how her day is going to pan out.

Sophie's mother, Lorna Watson, who is a public health consultant, feels schools need to be trained to understand children with Down's syndrome, even when, like Sophie, they can communicate well.

"She'll get more tired than other children, her fine motor skills are not as well developed, and she switches off sometimes and does not want anything to do with you," Dr Watson says.

Sophie struggles with writing and, now the class is moving on to arithmetic, she is having a bit of trouble with adding. Mrs Kay predicts that the gap between Sophie and her peers will get steadily wider.

Dr Watson says: "You have to have reasonable expectations, while bearing in mind there is a real range of abilities with Down's syndrome. There are people with Down's syndrome who have skied black runs, received the MBE or written books."

Ms Anderson would love to have the time and money to spread The Link Group model across Scotland and dreams of extending what is offered in Edinburgh, so that the brothers and sisters of children with Down's syndrome are supported. Sometimes they can feel sidelined, she explains.

"I did a presentation for Down's Syndrome Scotland about the Edinburgh model and, at that end, I was asked: `Is this a postcode lottery?' That's not what you want parents to be feeling."

However, in these straitened times, when education budgets are under considerable pressure, Ms Anderson's priority is making sure the service survives in its present form.

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