“We shouldn’t have to battle for the same opportunities that children without disabilities take for granted,” said Tania Tirraoro, parent of two boys with Asperger syndrome.

She was speaking at a rally in London where around 1,000 parents, children and teachers had gathered to call for more funding for SEND, ring-fenced funding and more accountability in the system.

But it is just five years since the new SEND system was introduced - with the aim of offering a “simpler, improved and consistent” help for children and young people with SEND.

What has gone so wrong?

SEND: Minister admits funding is ‘difficult’ for schools

Inquiry: Pupils with SEND ‘failed by cuts and deliberate delays’

Quick read: Half a billion shortfall in school SEND funding ‘crisis’

At the London rally - one of more than 20 such events around the country on Thursday organised by the parent-led SEND National Crisis campaign - many talked of how they had to repeatedly fight for their children to get the support they need.

And it isn’t just parents who are concerned: Ofsted, together with the Care Quality Commission, has been carrying out reviews of how the SEND system is working in every local authority.

Ofsted’s annual report, published in December, warned that too many areas were providing a “sub-standard service”. It pointed to rising exclusions among children with SEND, a lack of support for mental health needs, and some children with autism waiting up to two years to be diagnosed and getting no education at all in the meantime.

There are around 1.2 million pupils with special educational needs in England, 14.6 per cent of the entire school population. Of these, about one in five have needs which are severe enough to need an education, health and care plan.

These plans set out what support these children need including which school they will go to and importantly provide legal protection for that support.

Those children who have SEND but do not have an EHCP are on what is called “SEN support”. Schools are expected to meet their needs out of their own budgets, funded from a “notional”, non-ring-fenced, amount calculated on what a typical school of that size needs rather than the actual number of pupils with SEND.

New DfE figures published last week, on the same day as the SEND National Crisis rallies, show that there has been an 11 per cent rise in the number of pupils with EHC plans during the calendar year 2018.

And as the number of children with SEND rises, the system is buckling.

The Local Government Association has estimated that there is a funding gap of more than £500 million between what is needed and what they have.

The worrying signs are that this seems only likely to get worse. The school funding crisis means the system is now locked into a downward spiral. The more cash-strapped schools become, the less likely they are to be able to afford to give pupils on SEN support the help their parents feel they need - remember the money for these needs is not ring-fenced. 

As a result, more parents will apply for EHCP plans to try and guarantee that support; the DfE figures show applications for these plans rose by 12 per cent last year.

But then, once an EHCP plan is granted, a local authority has to find the money to provide that support from its high needs funding. And when that “high needs funding block” starts to dwindle, guess where a growing number of councils are turning in order to top it up?

Earlier this year, it was revealed that 38 local authorities had asked to move money from mainstream schools to the “high-needs block” to support SEND provision. But, of course, less money for mainstream schools makes it even harder for them to cater for pupils on SEN support, and so the cycle continues.        

The good news is that politicians are increasingly taking notice.

The government gave £350 million towards SEND in December 2018. Nick Gibb, schools minister, when asked what elements of education should be prioritised for funding has said there was a particular issue around high-needs funding and Damian Hinds, education secretary, has asked for heads’ views on how to improve the SEND funding system saying: “I’ve made clear that I will back headteachers to have the resources they need to provide the best education possible for every child - that ambition is no different for children with SEND, nor should it be.”

It seems then, that there is agreement that more money is needed, but the question is: how long will those pupils with SEND have to wait for the support they need?

The parents who were marching last week were the parents of children with SEND. But it is not just a SEND issue, it is an issue for all in education. 

More funding for schools, and the therapy and mental health services which work with them, could set up a virtuous circle in which catering for children’s needs earlier in life means they need less support later on.  

But that “could” depends on another, perhaps more fundamental, change.

At the moment parents who feel failed by the system are having to go to tribunals or even court. What they want goes beyond just putting more money in the existing system. They want a culture change to ensure that money stays with pupils with SEND so that they can finally stop fighting for what others take for granted.