Of course we can’t afford the specialist care we need for our son – no special needs parent can

The SEND struggle can still feel very cold, and very lonely. It is like being bivouacked halfway up a killer mountain in the middle of a blizzard

SEND parents face a metaphorical climb up K2, before accessing even the most basic support they need (AFP/Getty)

Ten thousand pounds.

My wife had been pricing up options as part of our ongoing battle with our local authority in case it should continue (as we expect) to dig its heels in over an education health & care plan (EHCP) for our son, who has autism. That was the top figure she quoted.

Such exercises are the inevitable result if you have a child with special educational needs and/or disabilities (SEND).

Truth is, if you have any form of disability or medical condition – call it what you will – you face a metaphorical climb up killer mountain K2 in trying to prove it, before accessing even the most basic support you might need to be able to get by in modern Britain. The state can and will call upon blizzards, hurricane force winds, and avalanches (of paper) in an attempt to prevent you from summiting.

The ten grand would provide us with some fancy climbing gear, so to speak. It is the cost of an all-singing, all-dancing, private report by an educational psychologist and various other experts.

Such a thing would serve as a wonderful “F U” to the bureaucrats, who appear to have determined that we should remain stuck on a windy ledge – regardless of the evidence we submit.

Of course we can’t afford it. I physically recoiled when I heard that number. How much did you say??

Then I started thinking... Could we? Should we? How might we go about raising the cash? Should we dip into the compensation settlement designed to assist with the purchase of equipment to assist with my own disabilities?

This is the life of a SEND parent; you do what you have to do. And if you don’t have the cash, you improvise. You find ways to fill your sling with as many stones as possible, because, unless you are an investment banker, a hedge fund manager, or a city lawyer, you will be engaging in a profoundly unequal struggle.

The agencies you are up against often claim they are underfunded, with some justification after years of Tory austerity. However, they can always manage to find the cash to try and crush a SEND parent in preference to doing their jobs. There’s always money available for lawyers, and whomever else they think they need to blow parents down the mountain.

“Wait just a second”, my wife said, in an attempt to head off my palpitations. “There’s another, online option at £750. Still painful, but achievable for us. Might do the trick, if we need it… I fear we will.”

That £750 is our own personal SEND tax. Afterwards, I started totting up the overall SEND bill and quickly realised that the total cost was well in the thousands.

It’s not just cash we’ve shelled out; my wife has had to go part-time and we have both invested evenings and weekends.

But this doesn’t make us special – in fact, far from it.

Every SEND parent, whatever their background and income level, pays this levy. There are organisations such as SOS!SEN and Special Needs Jungle that can help. Another charity, called Parents in Need, exists to assist people on lower incomes with funding the sort of reports my wife was pricing up for us.

Even with this help, the SEND struggle can still feel very cold, and very lonely. It is like being bivouacked halfway up the killer mountain in the middle of a blizzard. These organisations are the people who provide supplemental oxygen, hot tea and moral support while you’re there. In other words: the essentials.

There is a reason parents have been driven to suicide in battling local authorities, the finding of a cross-party parliamentary report back in 2019.

Which brings us neatly on to the subject of how to fix this. I’m told that next week will see the publication of the government’s SEND review, a hotly-anticipated green paper.

What everyone in the SEND world wants is an end to the tax, an end to the system that forces parents into unequal, gruelling, bruising battles with local authorities. As I’ve written about previously, the statistics say parents win more than 95 per cent of appeals against said authorities, which ought to tell you something.

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The problems are created by the mountains parents have to scale to get to that step. But there is also something that everyone in the SEND world will oppose: any attempt to use this to water down rights and support.

That has, regrettably, long been a tactic of the central government. Disabled people have been a favourite target for cuts, but they tend to be unpopular with the public. The government’s favourite wheeze for getting around this? Tighten the criteria and then force disabled people into long and arduous struggles to prove that they are actually disabled.

This isn’t just a problem with myopic local authorities. Education minister Will Quince has insisted that this will not be the aim. He’ll find he’s playing with fire if it is.

SEND parents, battle-hardened through their encounters with the state, are not a group the government wants to get on the wrong side of.