What happens to your children when you’re gone? This is a question that may cross every parent’s mind from time to time.
But for Sir Ed Davey, the leader of the Liberal Democrats, preparing his son’s life, care and finances for after he and his wife pass away is a practical reality.
This is because his son John has complex special educational needs and requires around-the-clock care.
So while Davey’s job as a politician is to assess how the Government’s reforms to special educational needs and disabilities (SEND) will affect families across the UK, his role as a father means the stakes are personal.
Speaking in an interview with The i Paper, he said: “Just because I’m an MP and my wife’s a councillor … didn’t make it easy at all. We understood the system, and my wife’s also a lawyer, but we had to battle very, very hard.”
John has an undiagnosed neurological condition that affects his mobility, meaning he cannot walk independently. He also has learning disabilities and difficulties with communication.
John first said ‘daddy’ at age eight
Despite being born with these complex needs, John was denied speech and language therapy until the age of five “because he could swallow his food and his drink and he was deemed not to need it”. Davey said his “red letter day” was when John finally said the word “daddy” at age eight.
“When you’re dealing with a child of one or two, you’d have thought trying to help them communicate at an early stage when their brain is forming would have been the right thing, but apparently it wasn’t,” he said.
This, Davey explains, is why he believes the Government’s plans for early intervention do not go far enough. The Lib Dems are calling for universal screening for SEND, which would enable teachers to assess all pupils aged six to seven to ensure no child “slips through the cracks”.
He welcomed elements of the reforms, which are set to see the vast majority of pupils with SEND educated in mainstream schools, with special schools reserved for those with the most complex needs.
Liberal Democrats leader Sir Ed Davey said his son was denied speech and language therapy as a toddler because he could chew and swallow food (Photo: Jordan Pettitt/PA Wire)But he warned that plans for children with high-level needs, like John, are “nonsense”.
Under the changes, children with education, health and care plans (EHCPs) – which are legal documents that describe a child’s needs and unlock extra funding – will be reassessed at key transition phases from 2030.
Children who meet the new legal threshold for the highest level of support will be given a Specialist Provision Package (SPP) and will therefore be eligible for a new-style EHCP. The Schools White Paper, which sets out the SEND proposals in a consultation, indicates that children with conditions that present on a spectrum, such as autism and ADHD, are at risk of losing specialist support.
Ministers have drawn up a draft of seven different packages of support, but it will be finalised in 2028 following a national consultation.
One in eight children is expected to lose their EHCP during the transition process, and instead be placed on an Individual Support Plan (ISP), according to the Department for Education. Schools will have a legal duty to provide these new plans, but they will not carry the same legal weight as EHCPs.
New-style EHCPs won’t work for all children
Davey said that his son’s needs are so severe that he will retain his EHCP under the changes, but the idea of a child with complex needs fitting into a predefined package is “nonsense”.
“That might work for a lot of people… I’m not convinced it’s going to work for everybody, because there are a lot of children who don’t fit into need categories, who aren’t diagnosed, like John, who have such complexity of needs that the idea that a predefined package is going to work is just nonsense.
“I’m going to be making sure that we’re looking at the whole reform of EHCPs to make sure they do help enough children and there aren’t any gaps.”
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Davey said that, in the end, school was not the right environment for John’s education. After two special school placements did not work out, he has been educated at home for the last few years.
“We managed to get it through the local authority, first of all, because it saves them money, and also because it’s right for John,” he said, adding that his son began to speak once he was in a calm home environment.
Davey said that if he and his wife had followed the UK guidance on SEND children when John was born, he would have been “mollycoddled and wrapped in cotton wool”, meaning he would probably need a wheelchair today.
But instead, the parents took him to the Peto Institute in Budapest – a world-renowned institution specialising in physical rehabilitation for children with motor disorders – where they did four hours of work a day. His wife, Emily, would write out every single exercise so they could recreate the programme at home.
“Now, John has progressed so much. He is able to communicate his needs,” Davey said. “I fear that if we did not seek out this therapy, John would be in a very different position now.”
Tailored support should not just be for “the lucky ones who have parents who’ve got resources and will fight hard”, he added.
John’s ability to hold his own weight and communicate his needs gives Davey some comfort, as it means his son will be easier to care for when he and his wife are no longer around. But his greatest fear is what will happen after they are gone.
“I just want to make sure he’s looked after,” he said. “Room 101 is what happens when I’m gone, when my wife’s gone. Although we’ve got great family and friends, the parental-child link is something that you have to experience to understand. It’s almost primaeval, and you can’t not fight for your child.”
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A DfE spokesperson said: “Our once-in-a-generation reforms are overhauling a broken, one-size-fits-all SEND system that has failed children for too long – backed by £4bn to ensure every child gets the right support, in their local school, at the earliest possible stage, without having to fight for it.
“For children with the most complex needs, we are guaranteeing Specialist Provision Packages – expert-designed plans with full legal protections – setting out exactly what each child requires, from specialist teaching and therapies to communication devices and one-to-one care.
“We have always been clear that special schools will continue to play a vital role – and we are introducing national price bands alongside strengthened standards to ensure every specialist placement delivers real progress for children, not higher bills for councils.”
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