The fight for resources becomes harder the older students become – making the SEND review especially critical for this group, write Rachel Amos and Janvi Patel
With a long trail of delays behind it, the government’s SEND review is billed to finally arrive this year, evaluating the support system for those students with special educational needs and disabilities.
There is already considerable concern amongst parents that not only are they not being consulted about the SEND review but that all the messages coming from government ministers suggest the focus is on changing the system (again) and not making the system we already have work better.
From a legislative point of view, the system is good – the Children and Families Act 2014 pulled education, health and care together and enables a holistic approach.
Unfortunately, it is in the implementation of the act, the divergence of application from one local authority to another and the fight that parents have to access help that lets this down.
Parents of older children and young adults with SEND will be the most sceptical of the SEND review outcomes.
Education and health care plan (EHCP) provision is supposed to run until children are 25 years old, but in truth, that is very hard to achieve. Most EHCPs are delivered at the top of primary school, with a decline in provision as learners move out of formal education.
I talked to Nick, who has a rare genetic condition, for this article. He was born in 1984, and Great Ormand Street Hospital refused to give him a life expectancy span – the only other recorded person with the condition had only lived to age 15. Nick is now 37.
He cannot speak, as he has a tracheostomy, so Nick had a statement in school and was supported. But when he left aged 17 – unable to complete A-levels – his father says his life “fell off a cliff”.
He has never had a paid job and got very little support. He is very good at spelling, and is very active in online chat groups about his condition, but at 37 his heath is poor. The family feel strongly that if he had been better prepared for leaving school, he could have been able to contribute much more, and might even have had a job.
Stories like these are a waste of opportunity and capability
Stories like these are a waste of opportunity and capability, and a waste of the statemented support Nick was given, which vanished overnight. Not only did his educational funding disappear, a new struggle began and this is the reality for many parents of older SEND students.
The personal independence payment (PIP) was brought in in 2013 by the then chancellor George Osborne to replace disability living allowance (DLA) as part of the austerity cuts.
PIP is assessed very differently from DLA, and even if a child has had DLA throughout education there should be no assumption that they will get PIP post 18. It is also a lower amount, despite the costs for the SEND young adult increasing as they get older.
At a point of extreme change and flux, SEND children and their parents may embark on the toughest legal fights of that journey, on a diminished income. Only eight per cent of parents of disabled children are in work.
Another obvious flaw in the system is for learners who have a late diagnosis – this is particularly likely if they are neurodiverse or have a hidden disability.
One of the parents that Support SEND Kids interviewed last year spent £50,000 to achieve support for her daughter who was diagnosed with autism at age 17.
That is well beyond the means of most parents and these sorts of costs are financially crippling. Who knows how good her outcomes might have been if she had been diagnosed earlier?
The recent SEND Money Survey carried out by Let Us Learn Too and the Disabled Children’s Partnership reported that UK families have spent a combined £14.6 billion fighting authorities, a tragic waste of money and time, given that appeals have a 95 per cent success rate.
And in many cases, “success” may come too late for some of the older learners.
Families with learners who are over 16 stand to lose a lot if the SEND review fails. We mustn’t let any more lives fall off a cliff.