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Boy with limited mobility stranded in classrooms

Victoria WaltonOxfordshire political reporter
Martin Wackenier Stefan stands to the right of the image smiling at the camera. He is wearing a checked shirt and dark framed glasses with short brown hair. Sonya stands next to him wearing similar glasses and blond hair. She is wearing a red top and holding a medium size black dog There is a Christmas type background to the photo.Martin Wackenier
Sonya's son, Stefan, has been left behind in classrooms due to his mobility issues

The family of a boy with a medical condition that affects his mobility says legally protected funding is needed to stop him being left behind in classrooms.

Sonya Zyssemich's son, Stefan, goes to a mainstream school in Abingdon. He has multiple epiphyseal dysplasia (MED) which affects his hips and means he needs adult support to get around. But due to a lack of funding, that help is not always available.

Stefan has an education health and care plan (ECHP), but while the education part of the provision can be challenged in court, the health element is assessed by the NHS.

Sonya said this means schools are not given enough funding "because it's a health provision not an education provision".

It means Stefan, who sometimes uses a wheelchair, needs to call his mum if he gets stranded, so she can alert the school or go herself to move him to his next lesson.

Sonya insists the school is not at fault, "they have tried their hardest to put in the provision that they can," she said. But the funding doesn't match Stefan's needs.

Sonya has been sharing her family's story as part of a meeting to help inform the health and social care select committee on the "missing H in EHCPs".

Chris Fulton, from Botley, also spoke about his son's experience. Tommy, who's five, has significant developmental delay, with Chris "battling through the courts" to help ensure the education part of Tommy's EHCP is fit for purpose.

But he described the health element as as "eye opening" and "light touch" on his health needs. "What that leads to is a thin sense of provision for the difficulties he faces," he said.

In her role as the chair of the health and social care select committee, MP for West Oxford and Abingdon, Layla Moran, said one of the main concerns was the "H part of the EHCP isn't written into legislation". This means a parent has less power to challenge the health funding of their EHCP.

Sonya Zyssemich and Chris Fulton stand either side of Layla Moran MP outside a school
Sonya Zyssemich and Chris Fulton have raised their concerns with Layla Moran MP who chairs the health and social care select committee

Moran described the move to bring the health provision in line with education as "common sense" but wanted to make sure it would make a difference.

She said "in the end we want more occupational therapists, better access to wheel chairs and the right funding in place so that people aren't fighting over pots of money."

"What we need most of all is the voices of children at the heart of the system," she added.

The local care board said the health part of an EHCP already comes with a certain amount of legal protection.

A spokesperson for Buckinghamshire, Oxfordshire and Berkshire West Integrated Care Board said "if the agreed health provision is not being provided, families can raise the issue with the relevant NHS body... Parents can also ask for an annual or early review of the plan, or if appropriate, an emergency review".