When Willow Langdale-Smith’s son, Theo, was just two years old, he was on 24/7 ventilation at home via tracheostomy owing to a serious heart issue. But despite the severity of his condition, she was told that Theo was not disabled enough to warrant social care input and that he would be attending a mainstream primary school.
The trouble was, Theo’s poor health meant it was hard to ensure any plan was up to date enough to ensure his safety in school, so Langdale-Smith opted to home-educate him. Then, shortly before he turned 6, Theo underwent a heart transplant. His physical health improved, although he was still tube-dependent and immunosuppressed; he was also diagnosed with autism spectrum disorder and attention deficit hyperactivity disorder.
Langdale-Smith looked again at school. She received an education, health and care plan (EHCP) for Theo, but it was so “woolly and ineffectual” that she decided to continue to home-educate him.
Following a two-year period without review, she approached schooling a third time, as his health had stabilised.
“It has taken almost a year of negotiation and information gathering to fulfil the annual review, and even though a place at special school has finally been awarded, he remains off roll, as there are no full-time places [available] currently,” says Langdale-Smith.
Theo – who is now nine years old – attends the school for a few hours, a few days a week, and for the rest of the time he is at home being educated by Langdale-Smith and a tutor who she pays for.
But she still feels lucky: “I genuinely believe that he would not have this place at the hugely oversubscribed school if I had not been able to interpret the law, copy in relevant consultants and partners to emails to the SEND team, and to be able to hold my head high in meetings, armed with confident knowledge.”
She says she knows that too many parents are not in a position to do those things. Until recently, Langdale-Smith was the chair of the Leicestershire Parent Carer Forum (LPCF), so she knows how the system works. But there are numerous parents out there who don’t have this insight, yet they have to wrestle with the intricacies and inefficiencies of the system daily to ensure their child’s legal right to inclusion.
How have we reached a point where, to get our most vulnerable students an education, you have to negotiate a system this complicated, and where the “you” in that sentence is a parent who may not have the knowledge or skills required to do that – or indeed, who may also have SEND, too?
The major problem is that local authorities have too many competing responsibilities, says Barney Angliss, a former local authority commissioner and now a SEND consultant who advises parents.
He points out that local authorities are responsible for overseeing schools’ identification of young people’s special needs; they are then responsible for assessing young people’s special needs, where these are likely to require additional resources – and for meeting the cost of these additional resources. They are also responsible for deciding when these additional resources are no longer required. As a result, this can end up in what Angliss describes as a “drive to the bottom”.
“Some of the assessments I’ve seen in the past year from local authorities right across the country are simply meaningless, and show no attention to the individual needs,” he says.
“They’re often a generic ticklist of things that rely on existing local authority facilities and may simply be compensating for the limits on school resources. Many of these plans offer provision that has been copied and pasted from other children’s assessments. That’s not what the law requires and it’s simply not acceptable.”
The issues Angliss flags up are all too familiar to Bren Prendergast, a SEND specialist adviser. She says that need assessments are “scant” and recommendations for teaching are “vague”.
“Many reports appear to be resorting to ‘google it’,” says Prendergast. This results in inadequate levels of support for children who then become disengaged or anxious, and gain a reputation as being “unfit for mainstream”, which in turn piles more pressure on the local authority.
You could argue that the local authority is advocating for the child in these circumstances, so the parent should not have to take on that role. But for the reasons stated above, in terms of conflict of interest, and also the fact that the parent has certain expectations of what they want for their child, many parents feel they are pushed into the role.
It’s a situation that Adam Boddison, chief executive of the National Association for Special Educational Needs, acknowledges happens far too often. He says parents and professionals are pitched against each other when it comes to advocating for children with SEND.
“The reality is that both want to put excellent provision in place and we need to see a greater emphasis on coproduction to make this a reality,” says Boddison. “Professionals may have the qualifications and the expertise in terms of navigating the system, but parents have expertise, too, particularly when it comes to knowing their own child.”
That cooperation seems tricky to negotiate at the best of times, let alone when funding is as stretched as it is currently. Parents report that they have to step up to ensure the right provision is allocated – as well as the right funding – because they can’t trust the LA to do so, and there is no one else in the system to take on that role.
Should schools be stepping up to give someone – the special educational needs and disabilities coordinator (Sendco), perhaps – an advocacy role? So many Sendcos do this already informally, but for the reasons Nancy Gedge has written about in Tes before (bit.ly/Sendcos), their power is severely curtailed.
Boddison believes there are better ways of ensuring that responsibility for navigating the system is not solely left to parents. He says three key steps could be taken to strengthen the advocacy of children and young people with SEND.
“Firstly, we could recalibrate the accountability framework so that schools are rewarded for being inclusive,” he says. “Secondly, we can build on the work that has already been done by the Whole School SEND consortium in growing a community of SEND advocates through workforce development. Thirdly, there are increasing calls for the appointment of a national SEND commissioner to be a champion, friend and protector of children and young people with SEND at the highest level.”
Such measures may go some way towards addressing some of the problems highlighted, but Langdale-Smith isn’t prepared to sit around and wait for these things to happen. She resigned from the LPCF because she felt there was no scope to develop a “more holistic and overarching parent-carer advocacy role with the tiny grants the DfE provide”. Instead, she’s taken the bull by the horns and set up a charitable organisation called Namaste Wellbeing, which is run by parent carers to develop wellbeing.
“This deliberately ambiguous and therapeutic name gives us the opportunity to work on parental mental health, by running workshops on meditation, but also to really educate and manage parental expectation of ‘the system’,” says Langdale-Smith.
“I know only too well that unless you’re personally educated and have the skills to cooperate and investigate, and use the SEND Code of Practice to your advantage, then your child is at a disadvantage, way beyond their disabilities.”
Simon Creasey is a freelance journalist