Mother and son, 7, forced to move into a trailer 120 miles from the family home so he can go to school
A mother struggling to educate her disabled son recounted how they were forced to move in a trailer 120 miles from the family home so the seven-year-old could attend a special school.
Dr Helen Hunt and her son Wilf spent the last two years of the term living on a campground in West Sussex, a remote county from Wilf’s father and two half-sisters in Weymouth, Dorset.
At 5 a.m. on a Monday morning, Helen packs the car with supplies, clothes, and food to last five days in the 22-foot trailer. They arrive in time for Wilf to have a quick breakfast outside Ingfield Manor School in West Sussex before entering class at 8:45 a.m.
After the school day ends on Friday, the couple then make the three-hour round trip to spend the weekend with the rest of their family.
Their life-changing routine was a hard-won result for Helen and her husband, who had to take a case to Dorset Council to claim that Wilf’s local special school was not meeting her needs.
The caravan is the only way for the family to live close to Wilf’s schooling, with AirBnB and rental options deemed too expensive.
“Until September, I had never set foot in a trailer, let alone towed,” said Helen. I.
“Life in a caravan is difficult. I have to top up my water supply every day, dispose of my wastewater and empty my toilet. Showering in a caravan is a bit difficult, and washing a child with cerebral palsy is even more inconvenient.
“I live this way because my local authority cannot adequately meet the educational needs of my son in the county where we live.”
Wilf, affectionately known as Wilfie or Wilfo, has quadriplegic cerebral palsy. He also has global developmental delay (GDD) and is non-verbal. He has serious learning difficulties and requires an EHCP (Education, Health and Care Plan) detailing his specific care.
When Helen noticed Wilf was having difficulty at his local special school, the family presented a case to the Dorset Council to be educated in a school with specific support for cerebral palsy.
The costly battles between parents and local authorities, who rack up tens of thousands of legal fees to secure their child’s right to education, are on the rise.
As local councils pay for special education, many are likely to favor schools in their area, fearing that additional fees will be taken from already strained budgets.
This year, the government said the Special Education Needs and Disabilities (SEND) system is under review and has also increased funding for SEND to £ 8 billion in 2021-2022.
Helen and her family lived in fear that their candidacy would be rejected by Dorset Council, fearing that their son would ‘fail’.
“Wilf was referred to the only school available to him in our local authority,” said Helen.
“There was no effort to really understand Wilf and his needs. He was assessed by a school psychologist employed by the Dorset Council who was not going to recommend anything other than the local authority school.
“For most parents, having the right education can make the difference between whether or not their child gets the GCSE.
“For Wilf, and for many other children with cerebral palsy, it’s the difference between learning to use a spoon or eating with your hands, it’s the difference between learning to support your own weight when transitioning from your body. wheelchair to the toilet rather than having the house fitted out with hoists.
“It’s the difference between teaching him life skills that parents of neurotypical children take for granted, or withdrawing him more and more into a world where I, his mother, cannot reach him.”
Helen says the toll “is immense” – both emotionally and financially – on the family.
“Some aspects of my career are on hold. It puts enormous strain on relationships and you spend your life living in a suitcase. It’s not what I imagined for my life in my thirties, ”she said.
But for Wilf, the progress is clear, and the sacrifice is well worth it.
The student is “lively and excited” when picked up at school. He can use cutlery and walk parallel bars, and loves to listen to everything from The Beatles to Johnny Cash.
However, Wilf’s education is still subject to an annual review.
Despite testimony from his pediatrician and manager warning that Wilf could lose some of the skills he has developed if he leaves Ingfield, Helen said the Dorset Council refused to secure funding for Ingfield until the end of his primary school years.
Although she has not heard from other families living in a part-time trailer, she said the number of families struggling to support the education of a SEND child is manifold.
She said, “You are abandoned by a system that makes you fight for everything and constantly feel in fight mode, in order to meet your child’s needs.
“I’m a doctor and Wilf’s dad is a journalist, and together we give our son a strong voice.
“But there are so many families who may not know how to navigate the system, or how to access help, or are just too exhausted to be able to fight their way through a battle with the local authorities.” , she added.
Richard Luke, 43, has cerebral palsy and works for the disability rights charity Scope.
He said I if SEND’s educational offer is not corrected, “a generation of children will grow up without the education they need or deserve”.
“The huge problem I hear when I talk to parents who have children with cerebral palsy is that they struggle and have to fight to get the support their child needs to have an equal education,” did he declare.
“Local authorities, understandably with cuts and austerity measures, are reluctant to fund the levels they should. If this happened to other children in society, there would be an uproar.
“It should be noted that 60% of children of people with cerebral palsy or above average intelligence. Why can’t they learn and have the education that everyone is entitled to? “
Earlier this year, Helen testified before an all-party parliamentary group to review specialized provisions for children with cerebral palsy.
“Helen’s story touched many people during the reunion we had – and it is unfortunately still far too common.” MP Paul Maynard, co-chair of the Cerebral Palsy APPG, said I.
“Because CP is such a broad spectrum, it’s one of the least understood neurological conditions, and parents still have to fight as hard on behalf of their children as my parents did for me ago. around 40, it seems sometimes. “
Mary Kelly Foy, MP and Cerebral Palsy APPG Co-Chair, said “it was awful to hear about the sacrifices Helen had made to secure proper care for Wilf.
“Any system that imposes these extremes on parents is clearly not suited to its purpose.
“In the UK, it is undeniable that there is a lottery of postcodes for access to services for children with cerebral palsy, with a very variable quality of service.
I approached Dorset Council for comment.