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

Ten thousand pounds.

My wife had been weighing the options as part of our ongoing battle with our local authority should she continue (as we expect) to cling to an Education, Health and Care Plan (EHCP) for our son, who has autism. This is the highest figure she quoted.

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

The truth is that if you have any form of disability or medical condition – call it what you will – you face a metaphorical climb up K2 killer mountain trying to prove it, even before you access the most support elementary you might need to be able to get by in modern Britain. The state can and will call upon blizzards, hurricane-force winds, and (paper) avalanches to try to keep you from reaching the summit.

The ten thousand dollars would provide us with fancy climbing gear, so to speak. It’s the price of a private report while singing and dancing by a school psychologist and various other experts.

Such a thing would serve as a wonderful “FU” to the bureaucrats, who seem to have determined that we should be stuck on a windy ledge – no matter what 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 could we raise money? Should we tap into the compensation settlement designed to help with the purchase of equipment to help me 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 money, you improvise. You find ways to fill your slingshot with as many rocks as possible, because unless you’re an investment banker, hedge fund manager, or city lawyer, you’ll be engaging in a deeply unequal fight.

The agencies you face often claim they are underfunded, with some justification after years of conservative austerity. However, they can still manage to find the money to try to crush a SEND parent rather than doing their job. There is always money available for the lawyers and whoever else they think they need to blow up the parents.

“Wait just a second,” my wife said, in an attempt to avoid my palpitations. “There is another option online at £750. Still painful, but doable for us. It might do the trick, if we need it… I’m afraid we will.

This £750 is our own personal SEND fee. Then I started adding up the overall SEND bill and quickly realized the total cost was in the thousands.

It’s not just money that we’ve spent; my wife had to go part-time and we both invested evenings and weekends.

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

Every SEND parent, regardless of origin and income level, pays this tax. There are organizations such as SOS!SEN and Special Needs Jungle it can help. Another charity, called parents in needexists to help people with low incomes finance the type of reports that my wife offered to us.

Even with this help, the SEND struggle can still feel very cold and very lonely. It’s like being bivouac halfway up the killer mountain in the middle of a blizzard. These organizations are the people who provide supplemental oxygen, hot tea, and moral support during your stay. In other words: the essential.

There’s a reason parents were driven to suicide fighting local authorities, a 2019 cross-party parliamentary report concluded.

Which brings us perfectly to the topic of how to fix this problem. I’m told that next week will see the publication of the government’s SEND review, a much-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, grueling and deadly battles with local authorities. As I wrote before, statistics indicate that parents win over 95% of appeals against said authorities, which should tell you something.

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

Unfortunately, this has long been a central government tactic. People with disabilities have been a prime target for the cuts, but they tend to be unpopular with the public. The government’s favorite wheeze to get around this? Tighten the criteria and then force people with disabilities into long and arduous struggles to prove that they really are disabled.

It’s not just a problem with myopic local authorities. Education Minister Will Quince insisted that would not be the goal. He’ll find he’s playing with fire if that’s the case.

SEND parents, hardened by their encounters with the state, are not a group the government wants to side with.

About Antoine L. Cassell

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