Parents of children with special needs are at breaking point – we deserve better

“I’ve met so many parents who have been the most amazing advocates and fighters for their children’s rights and that’s brilliant and I applaud every single one. But I’m more worried about the children that don’t have parents that are in that position and aren’t able to fight. I want a system where nobody has to fight.”

So said Will Quince, the children and families minister at the Department for Education (DfE), during a webinar hosted by Special Needs Jungle, a non-profit organisation and essential resource for any special educational needs (SEND) parent.

Well, most of us “fighter-parents”, pushed to breaking point by a system that you at least appear to recognise is failing, feel exactly the same way.

It breaks our hearts every time we write emails or make phone calls on behalf of our own children to our local authorities, which regularly fail to respond. It is at the back of our minds when we raise complaints. When we write to our local MPs (which doesn’t always help much) or to councillors. When we calculate the potential cost of legal representation or other help with the preparation of appeals.

It haunts us that some parents in the same boat are forced to give up. The SEND community possesses considerable reserves of empathy, a commodity that the government seems to lack.

To be fair, Quince, who wrote an open letter to parents and carers of children and young people with special needs and disabilities upon his appointment, acquitted himself quite well in the webinar. In a government depressingly short on talent, his delivery suggested that here was a minister with a fully-functioning and engaged brain.

Special Needs Jungle said that he seemed “to be willing to speak to parents openly” and appeared “to have a genuine desire to help disabled children, young people and parents/carers”.

Regrettably, this has not always been the case. But the charity also noted that the sector’s bruised parents are “more knowledgeable, more vocal, more cynical, and, unsurprisingly, a hell of a lot more angry”. My own family can testify to that. We’re hopping mad and Quince has some work to do to prove that his honeyed words amount to something more.

This brings us to where the problems start, because it doesn’t matter how much goodwill the minister has if the same isn’t true of the wider department in which he works or of the government in which he serves. That remains open to question.

Quince was speaking ahead of the publication of a much anticipated (and delayed) SEND review and consultation. I recently covered another DfE missive of no less interest to the special needs parenting community entitled “School Attendance: Improving Consistency of Support”. The language used in the document was prescriptive, even threatening, particularly to parents of children experiencing attendance difficulties as a result of untreated anxiety or other mental health issues, bullying, disability or a combination of all of the above.

This is one of a number of government documents hailing from the DfE, which Tania Tirraoro, the founder and co-director of Special Needs Jungle, criticises for their tendency to have small sections in them devoted to special needs, as if this can be dealt with by putting the issue in a little box.

This is a recipe for failure. To make the system work properly for children with special needs, to make it so parents don’t have to engage in debilitating battles to get what the law says they should be entitled to, the government needs to do better than this. SEND needs to be at the heart of these documents. It needs to run through their fibre.

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Quince at least recognised that SEND is a multi-headed beast. The dismal performance of Children and Young People’s Mental Health Services, better known as Child and Adolescent Mental Health Services (CAMHS), also often plays a key role in parents’ problems. So do failings in the provision of other necessary services, such as occupational therapy and/or speech and language therapy.

It is nice hearing a minister talk about working with other departments with a view to improving the situation. The trouble is, it doesn’t always work so well in practice, especially when it comes to the core issue that can’t be escaped: resources.

There is no excuse for the cynicism displayed by local authorities when confronted by SEND parents. It is not just their failure to respond to communication, or their stock answer to any request (“no”) that creates problems. They have been known to engage lawyers to battle parents when they take councils to appeal, even though it doesn’t help them much. A staggering 96 per cent of the cases heard by tribunals go the way of the parents. But these are not technically wins. They are simply them getting what their children are entitled to in law.

The trouble is, there’s a cold and cynical calculation at work in all this. Local authorities realise that if their blocking tactics make enough of parents go away, they will ultimately save money. This is what, to them, makes it worth their spending public funds on lawyers. The fear that saving money is the ultimate, and cynical, aim of the SEND review is also all too real.

Catriona Moore, policy officer at IPSEA, a charity providing special needs advice, summed it up in a tweet: “‘Clarity about entitlements’ was the minister’s phrase. Let’s hope there’s no attempt in the Green Paper to water down children’s existing rights and entitlements.”

If that’s where this ends up, then all Quince’s words will count for nothing, and the bitter battles many parents have been left waging will shift from local authorities and health services to him.