Solving the SEND Crisis - Call for Evidence
This is the evidence I submitted for UK Parliament’s Solving the SEND Crisis - Call for Evidence.
My evidence was not chosen as part of the official documentation, but wanted to share it here.
My name is Gemma Wilkinson-Lowe, I am a writer and editor for children’s books and I live in Essex. I am submitting my evidence because over the last few years, I have become an advocate of sorts for SEND children, parents in the EHCP process and accessibility in books and publishing. Of all the reasons I have experienced to write in about the SEND crisis, I wanted to focus on the heavy weight the process puts onto the parents, who not only seem to be relied upon to drive the process forward, but in order to do so, hinges seemingly entirely on the privilege and position of the parents.
My son is in year 1 and is visually impaired and neurodiverse; he has a long and terrifying list of medical diagnoses actually, but so far, has been thriving – in part (if you’ll excuse my parental pride) due to his own brilliance, tenacity and determination, but also, he has always had full support around him; from us, his family, his nursery, his doctors and now, the teachers in his school.
At his first ophthalmology appointment, when he was about 10 weeks old, the doctor bluntly told me he was blind. Then left the room. Nearly three and a half years later, I learned that it was at this moment that the doctors should have contacted the council’s special educational needs team, something that didn’t happen until nearly three years later.
During these three years, we had an initial set of appointments for ophthalmology, neurology and genetics between our local hospital and Great Ormond Street. Then the pandemic hit, and we did not have any appointments (despite chasing endlessly) for 15 months nor did we have any other form of support to discuss what was happening with with our son or how he was developing.
The system had failed us immediately, but we didn’t know it. Ignorance is bliss, as they say, and we launched into a world we didn’t know, armed only with what sadly turned out to be, a naive assumption that the systems in place would, and were, working as intended. Our son was in the system, so we were sure the wheels would turn and that would start the process. What we didn’t know then was that it would only be by us fighting, researching and spending our energy and time, that the process would even start. Follow-up appointments requested by doctors by a certain date wouldn’t automatically come through unless I chased by phone, spending hours on hold; a few times I convinced other doctors to send a chasing letter to get an appointment or resorting to calling PALs a few times for a follow-up. Often, we didn’t even know we needed to fight, and even when we did, where should we start. Sometimes it truly was that I said the right combination of words at the right person, possibly even at the right moment, and by chance it seemed, the process started. In later years we’ve learnt that just because it’s started, doesn’t mean it has the energy to continue by itself, and instead it would be a process powered only by us fighting and chasing at every single stage.
It was with this knowledge and experience with medical appointments on the NHS for my son that two years later, I entered into the EHCP and school system. These two systems, while separate, cross-over frequently in SEND matters.
Given the list of my son’s medical needs and his visual impairment, I started to think about the support he might need at nursery and get everything in order for him eventually starting school, in three years time. So I emailed the nursery SENCO, whom though she eventually became a staunch ally, I had to work to convince her, over several emails and a meeting, that my son needed to be on a one plan. I had done my research before I emailed her, as my sister was a manager of a nursery setting herself, so I sought her advice as well as the advice of her boss too. (This isn’t the first instance in our story that relies and hinges on our personal connections and circumstances to get the process moving.) At that point in his life, he wasn’t struggling at nursery, but knew he was likely to need at least monitoring closely to ensure he didn’t fall behind. At the least, he would need the space and activities adapting to his visual impairment. Him starting to struggle should not be the catalyst for support with documented medical issues, and nor should it be for any child.
It was my correct combination of words to the right person that kicked off the EHCP process for us, it was the nursery SENCO who put us in touch with his Visual Impairment Specialist Teacher (who should have been put in touch with us when we found out there was an issue with his eyesight at 10-weeks old).
Despite all this, as I have been reflecting on the systems we have been through over the last few years (medical, educational, support), I think we might first be perceived as a textbook example of how the system does work to benefit those who need it. As I have become more involved and aware of the stories, trials and difficulties of others who have journeyed through the same system, I have come to believe that the fact that we had a relatively easy time in getting the EHCP (three weeks before the summer holiday before his reception year), could actually represent the inherent problems in the system. And, as quite a lot of things tend to be, I think part of the problem is privilege.
Applying for an EHCP is a long, emotionally draining, technically difficult and heartbreaking process even at its smoothest. As I am sure many SEND parents who have experienced this process will attest, to see your child stripped down to medical and legal language, explaining all their issues without compassion in black and white brought me to tears many times. But you continue to pull yourself through because it is in their best interests.
It’s quite an academic exercise really; I spent time reading everything I could about the EHCP process, the law surrounding the process and SEND, I read government legislation, EYFS and KS1 curriculums and joined various SEND forums online. I did my research; I had the privilege to find the time and energy to do this and used the skills I use in my profession (I am a writer and editor) to do this, so this was in my wheelhouse. A privilege of my own circumstances and education.
This meant that going through the process, I knew the questions to ask, our rights and, often most importantly, who to ask those questions to. Along with the fabulous SENCO at the nursery he attended, along with his visual impairment specialist teacher (and I can not express how indebted we are to brilliance and experience of both those amazing women), we strategically made our way through the process and were successful first time.
I say ‘strategic’ as collectively we made sure to benefit the application where we could: by making sure we had 18 months of One Plans as evidence, medical reports and letters from all his doctors, as well as my own written evidence. We applied for it mainly through the lens of his visual impairment, knowing that the criteria for this is black and white and he fell way below the eyesight criteria, and bolstered it with the support he would require for his other needs, including his neurodivergence. I can’t call this a privilege, more a medical happenstance, but by this point, we’d figured out everything and everyone we needed in place to benefit for our intended outcome. The process took longer than the legal 20-week timeframe (from my research, in Essex only 1% of applications are within the legal timeframe), it was just shy of 50 weeks. It just squeaked in time for us to start talking to the school before he started – two weeks before the end of the summer term.
After my son had joined school, I discovered that large print editions of the phonics scheme at the school were unavailable, so I worked with Little Wandle Letters and Sounds and HarperCollins Publishers to ensure they would be. I mention this to bolster my point above: my son now has access to large print editions of his classroom phonics scheme, not just because he requires these to access his education because of his disability and it is right that he be provided with them, but because his mother happens to work in the publishing industry, knew these books can be created (and how) and I knew how to talk to and approach the publishers to get the result I wanted. I, as well as many parents, will go to extraordinary lengths for the benefit and happiness of my children, but this situation irks and enrages me because although our son is the at the very centre of our world, in society and the school system he is in, he is no more or less deserving to have his needs met than any other child, yet circumstances have blessed him. Of course, other visually impaired children on this phonics scheme will also benefit now, which makes me feel happy and incredibly proud. After finding myself in the SEND system, experiencing the stress and failure of it in real time, I decided that instead of getting angry and frustrated, I would do whatever I could to make small positive changes, and I will continue to do this where I can.
It even goes further: we are currently on the waitlist for an ASD assessment, and we are nearly a year into the 18/20 month wait for an appointment. Our luxury here is that we are not seeking and waiting this diagnosis in order to start the wheels moving so he can get the support he needs in this area, because, as mentioned above, we already have that in place, but we are seeking diagnosis because our son deserves to know about himself as fully as he can. I have met and spoken to so many people who are in desperate need of diagnosis and children are struggling in the meantime without the support in place at home and school.
Upon much reflection, researching, reading and experience, from my perspective the problem with EHCP and wider SEND support isn’t so much the laws themselves, but that the implementation of the laws is often non-existent; at worst flagrantly twisted by the people meant to uphold this support due to huge budget issues and at best, works only for those with the privilege of time, energy and education to ensure it works for them.
In addition to this, I think the bar to participate in this system, which deals with the most vulnerable in our society, is entirely too high. For success, it needs a lot of time, energy, money and education just for it to function smoothly. And it functioning in this manner seems to be exceedingly rare: I become more aware of how lucky and privileged we are in this area every day. Even the success in this process is at a high cost, emotionally and mentally, for those who can participate, but that has almost become a luxurious side-effect of success for your SEND child. IPSEA has a legal course available on their website, advertised for professionals and parents and carers of SEND children going through the system. That IPSEA even feels it should have to advertise a law course in such a way is ridiculous to me: Children should be supported because they need support, not because their parents and carers have completed a law course. And what happens with my son when he is old enough to take over his own care? Not only will he have the barriers to society he has through his visual impairment and neurodivergence, he will also have to spend his time and energy fighting for support to get his needs met. This is not acceptable and we must do better.
