Inclusion or therapy: do parents face a tough choice?

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Why a parent calls for greater access to therapy in mainstream schools.

It sounds like a stark choice, inclusion or therapy, but that’s how I felt when my son started school back in 2005.

Jack was born nine weeks early and suffered a major brain haemorrhage, resulting in quadriplegic cerebral palsy and visual impairment. Following the bleed, Jack went through a series of shunt operations to manage hydrocephalus, many of which ended in infection or blockage. The first three years were a bit of a blur for myself and husband Martin; coping with the medical problems was more than enough for us.

We were fortunate enough to have been given excellent advice from the start by our consultant neonatologist at Addenbrooke’s NHS Trust. “Stimulate, stimulate, stimulate” are words that will stay with us forever. So, stimulate we did, and Jack developed into a sociable boy, eventually speaking at the age of five but unable to sit or stand without support.

When it came to sending Jack to school, we were advised that he would cope well in a mainstream school. So, we headed off to our local village primary school full of trepidation, despite assurances that access for Jack’s wheelchair had been provided and a new changing room built over the summer.

In his early years, Jack had received full and regular support from the five therapists involved in his life. But once in school, we soon learnt that access to therapy was no longer guaranteed. From the start we became go-betweens between the local child development centre, our local authority and the school, trying to organise regular therapy and struggling to get the different bodies to talk to each other. This was something we hadn’t been prepared for, and something which added to the pressure whilst we struggled to juggle the demands of work and the care of our younger son Dylan.

Luckily for us, Jack’s school has always had a “can do” policy, so the battles have always been shared. We’ve had nothing but support from Waterbeach Primary School and the current head has been a huge player in Jack’s development, alongside the SENCO and Jack’s teaching assistant.

And there have been many battles! Trying to improve access to classrooms as Jack moves up the school hasn’t been at all straightforward. At one point we waited so long for plans to come back from the local authority that my husband had to build a ramp himself. Jack still uses that ramp today.

But the biggest battle of all has been fighting for continued access to therapy and equipment. Had Jack gone to the local special school, he would have received regular physiotherapy, speech and occupational therapy. Visits from therapists to mainstream schools appear to be infrequent and rushed. It all appears to be down to resources and “he who shouts loudest”.

Not every family wants to be a trailblazer, and not every family is equipped with the skills and determination to carry on fighting. Families should not have to choose between inclusion and therapy. Regulation is essential to ensure that children in mainstream schools have access to all the therapy they need to reach their potential. For now, though, we’re surviving, and Jack continues to shine, thanks largely to Waterbeach Primary School.

Article first published in SEN Magazine issue 42: September/October 2009.

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