My son Harvey has just turned five.

He can count to a thousand. He knows the alphabet forwards and backwards. He loves cars, Play-Doh, and making us laugh. He’s also deafblind. Harvey is severely sight-impaired and profoundly deaf, and he uses bilateral cochlear implants to help him hear the world around him.

Like so many parents of disabled children, I’ve learned that loving your child isn’t enough. You also have to fight. Constantly.

Harvey is supported by the Sense MSI service, and last Christmas, he was the star of Sense’s Christmas appeal. This year, I’m campaigning alongside Sense on SEND reform, because what families like ours are facing right now is frightening – and it cannot be ignored.

The fight for support

When Harvey was younger, we waited more than a year for his education, health and care plan (EHCP). By law, it should take no more than 20 weeks. That piece of paper isn’t a “nice to have” – it sets out the support a child is legally entitled to. Without it, everything falls apart.

Because of that delay, Harvey was placed in a busy mainstream nursery. The staff were kind and did their absolute best, but it simply wasn’t the right environment for him. He couldn’t cope.

It was heartbreaking to watch. Harvey became anxiety-ridden. He stopped eating properly. He stopped sleeping. He stopped listening and talking. For three months, he didn’t go to nursery at all. He just wasn’t the same little boy anymore.

I had to give up my job managing a primary school kitchen so I could focus on him. Like so many parents, work became impossible when the support my child needed just wasn’t there.

Sadly, our experience isn’t unusual. New research from Sense shows the scale of what families are dealing with. Over a third of parents have had to leave work altogether, and 40% have reduced their working hours because appropriate support for their child simply doesn’t exist. That’s not a personal failure – that’s a system failure.

Finally, a place to thrive

In September, Harvey started at a special school for deaf children. It’s an hour and a half journey each way, but it’s changed his life.

He’s in a class of five, not a large, overwhelming group. When he wakes up in the morning, the first thing he says to me is “Mr Jones” – his class teacher. He runs out of the house to his school taxi and comes home smiling.

He’s thriving cognitively. Everyone tells us how bright he is, especially with maths. For the first time, he feels safe enough to learn.

But the damage from those missed early years hasn’t disappeared. Harvey still finds other children frightening. He loves adults and his brothers, but he struggles to interact with his peers. Those early experiences stay with you, especially when you’re a child with complex needs.

That’s why early, specialist support matters so much. When disabled children miss out on it, the impact can last a lifetime.

Why SEND reform terrifies families like mine

I agree that the SEND system needs reform. Anyone who has lived through it knows it isn’t working. But what terrifies me is how those changes might be made.

Sense’s research shows that nearly one in two parents (47%) are worried their child’s support could be reduced under the proposed reforms. Half of parents say they feel nervous about the changes being suggested. I am absolutely one of them.

We fought tooth and nail for Harvey’s EHCP and the funding he now receives – funding he needs to access education safely and meaningfully. My fear is that reforms will give local authorities the power to take that support away.

If any of that funding is stripped back, Harvey will suffer again. And I honestly don’t know if we could go through that ordeal a second time.

Are we going to go backwards? Are the barriers we’ve spent years breaking down just going to be rebuilt?

You can change the law, but if local authorities don’t have the staff, funding, training, or specialist expertise to deliver it, nothing improves. In fact, things get worse.

Sense has been clear about what reform must look like. Legal protections for disabled children and families must not be weakened – especially around EHCPs.

Schools need sustainable funding, specialist training, and SEND support on a strong statutory footing. Without that, reform risks deepening an already overstretched and underfunded system.

Kim fighting for our stance on SEND reform

Why I’m speaking out

I’m campaigning with Sense because families like mine are already at breaking point. We are exhausted. We are scared. And we are done being told to wait, to be patient, or to accept less for our children.

Harvey deserves the chance to learn, to grow, and to feel safe in education – just like any other child. Every disabled child does.

We’ve fought so hard to get here. Reform must not take that away.