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"I’ve had to fight for everything for him"

"I’ve had to fight for everything for him"

Published by Local Democracy Reporter Rebecca Curley at 12:42pm 11th September 2019.

The school run can be heart racing at times with parents trying to make sure their children arrive in time for the bell.

But for Surrey resident Clare McCarthy there is the added stress of her son Hayden whose life limiting illness means he could have a seizure in the car at any time. 

This means she cannot drive him to school without help as it’s too dangerous for herself and her son. 

This summer, Clare has been fighting to get financial support from Surrey County Council to help her family. 

And just two days before the children went back to school friends launched a petition to raise awareness of their case - receiving over 1,000 signatures in just over 24 hours. 

11-year-old Hayden has a rare genetic condition called tuberous sclerosis which means non-cancerous tumours develop in different parts of his body. 

The tumours can affect his brain, skin, kidneys, heart, eyes and lungs. 

Hayden is non-verbal and has to have an implant to help with the seizures and a gastrostomy peg. 

Clare says she was given the chance to choose from four schools for the 11 year old to attend this year - and so before the summer break put down her preferred choices.

She was told the council would only finance transport to the one officers deemed the most appropriately close.

But for Clare the nearest one identified would not meet the needs of her son. 

Under SCC’s policy a parent can apply for funding under exceptional circumstances - Clare says Hayden’s condition must fall into this category: "This school ticked all the boxes. It had everything we loved. Every box we are ticking and they are still saying no."

Despite choosing two schools SCC allocated a different school to Hayden - one the council is willing to finance transport for.

But Clare argues that even though route finders show the distance from their home in Englefield Green should take a few minutes less the journey is a lot different. 

The family chose Portesbery School in Deepcut but they were allocated Walton Leigh in Walton-on-Thames. Both are around 25 minutes and between 12.3-12.7 miles from their home. 

Clare said: "We’re talking about a matter of half a mile."

An appeal date has still not been set and anxious by the frustration and the effect it was having on the family friends launched a petition on Tuesday, September 3.

Within 24 hours over 1,000 people had signed it with hundreds commenting on their situation and many saying they understood the concerns. 

Clare adds: "No one from the transport team has been out to meet him. He needs one-to-one care 24 hours a day. I got to the point where I felt no-one was listening to my situation."

With two other children - aged 13 and three - this means Clare now has three different school runs to make.

So far she has managed to rope in the help of friends and family to sit with Hayden in the car while she drives him to school: "It’s unsafe for me to travel with him on my own because he can have a seizure at any moment. It’s dangerous."

Her husband James works long hours as a landscape gardener and is the only source of income for the family. 

But she fears she may have to ask her teenage daughter Amber to help her - meaning she will be arriving late and having to leave early from her school.

Clare, who has had to give up her job as an auxiliary nurse to care for her son, adds: "He didn’t ask to be born with all these problems. I’ve had to fight for everything for him - and it’s wrong."

Surrey County Council recently changed its policy around transport funding for special needs children, scrapping support for post-16 and those under five, in a cost-saving move.

The council would not comment on Hayden’s case. 

But a council spokesman said:

"At Surrey County Council we are committed to supporting all residents especially the most vulnerable to have their needs met and lead fulfilling lives.

"We have a statutory duty to provide free home to school transport for students with special educational needs who attend their nearest suitable school.

"However, where a parent/carer chooses to send their child to a school which is not their nearest they are responsible for putting in place travel arrangements and for the costs.

"If a parent/carer feels that there are exceptional circumstances linked to their case then they may follow the Council’s appeals process. We cannot comment on any individual cases."

 

 

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