The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
The Guardian, 7th April 2009