This post is a tangent from my usual posts on neuroplasticity and polyvagal theory, but I feel an important one.
While neuroplasticity work is extremely helpful, it is also important to set your child up for success by arming yourself with knowledge of the SEND system and how EHCPs work.
In the week when I originally wrote this piece, parents and children across the country had just rejoiced (or not) at finding out about their children’s secondary school placements.
I am writing this as the parent of a child who has a different way of looking at the world and a different way of learning, which requires specific accommodations and interventions for him to be on a level playing field with the other children in his class.
This different learning style is referred to as “special educational needs”. The term “special educational needs” exists due to a crisis in education in the UK – an education system based on a very narrow, result-driven, checkbox curriculum, the de-skilling of teachers, who tend to have a very limited background in child development and psychology, and enormous, unmanageable class sizes. The term really means children who are square pegs who do not fit round holes, and constantly using the term “SEND”, to most of us “SEND parents” is incredibly UN-inclusive.
My child is DME (Dual/Multi Exceptional – which means he has a profile of above average underlying ability, but with a range of barriers to learning). He has diagnoses including auditory processing disorder, developmental language disorder, dyslexia, dyspraxia and attention difficulties. His high learning potential along with these barriers to learning mean that schooling in a mainstream setting could be highly traumatising if we tried to make him fit the mould.
In my work with children and adults with neurodiversity and trauma, I deal with children with a huge range of presentations and difficulties from all over West Sussex and beyond, and very often have parents in clinic on their knees with identical stress to what we’ve had to deal with over the past 3 years or so.
We joined the school when my son was about to go into year 3, from a small prep school – mainly for financial reasons, but also because we felt he needed more help than his previous school was qualified to offer. When we came to look around our primary school and two other WSCC primary schools, we were told by all three schools that an EHCP (Education and Healthcare Plan) is not necessary for primary schools, because they will accommodate needs anyway, and that EHCPs tend to only be useful for secondary schools. Also, that if we started the process in year 3, we wouldn’t have one until year 6 anyway.
On the strength of these comments, which I knew to be unwittingly misleading due to there being a very clear law in place (which I had studied), I decided to put the wheels in motion before we arrived at the school.
Sadly, I’ve now found out from speaking to a former state school SENCo that this may have caused ripples of annoyance with the school, even before we joined – going to tribunal to appeal the nonsensical content of the original EHCP was something I don’t think any parent at our school has ever done before, and seemed to horrify most people. I don’t know if this is everywhere, but certainly schools in our area dislike parents who advocate for their children.
There is a misconception amongst most people that “you have to be really severe to get an EHCP”. It is true that West Sussex only really tends to hand EHCPs out without argument to children who are smashing classrooms, or other people, up. Sadly, it can also boil down to who has spare funds for private evidence and legal representation, which can amount to several thousand pounds. The SEND community, nationwide, has learnt that we cannot trust anyone on a local authority payroll (including SENDIAS), and we have learnt how to identify gaslighting by public servants and deflect it effectively. I could actually give lessons on how to do this now.
It is not correct that it would take 4 years to get an EHCP in place – in fact, the legal timeframe for the process is 20 weeks. It is also not correct that a school must monitor and gather evidence over a number of terms – this is the school’s POLICY, not law. It is also incorrect to insist that a child has a diagnosis before a needs assessment can take place – this is about identifying a child’s needs and putting support in place to level the playing field. Every single autistic person is unique, so a diagnosis is not going to tell anyone what exact provision an autistic child needs. A parent can make a request for an assessment at any stage, but it is wise to have evidence to back up the need for an assessment.
Shockingly, most West Sussex schools’ SEND policies are illegally worded, but it is down to parents to realise that this is the case.
Why is this the case? The truth is that it’s deliberate: to save the local authority and school money. This is NOT about meeting the needs of children – it’s about forcing them through a system that is not fit for purpose.
The legal test for an Educational Heath and Care Needs Assessment (EHCNA) is:
- whether the child or young person has or may have special educational needs (“SEN”); and
- whether they may need special educational provision to be made through an EHC plan.
If the answer to both of these questions is yes, the local authority must carry out an EHC needs assessment.
I know of other DME (Dual / Multi-Exceptional) children with high IQs, who were reading Harry Potter in Reception, had passed grade 8 piano with a distinction by the age of 9 and knew how to use Pi by KS2, but whose sensory and mental health needs are such that they require an EHCP to allow them to achieve their potential and have needed specialist secondary settings rather than having to cope with the trauma of a boisterous, enormous secondary setting with poor pastoral care. But, in this unaccepting, ableist world, there is this awful misconception that EHCPs are something to be ashamed of.
In our case, we requested an assessment on 30th April 2018. Our assessment was turned down on 22nd June 2018, so I immediately put in an appeal to the SENDIST tribunal. This is a court hearing, which is conducted “on the papers”, so no attendance in court is required. 95% of SENDIST tribunals are either vacated by the local authority or find in favour of the child, but schools do not help with appeals because there is a conflict of interests.
We had the option to go to mediation, but mediation is often used as an excuse to waste time by local authorities to save money and put off the evil day, so I wanted to take our case through the legal process. Annoyingly, the recent SEND review is abolishing the ability to go straight to tribunal, and make it obligatory to go to mediation first. This sounds to me like a wonderful way for local authorities to stall the process, but that’s just me being cynical.
In our case, because of all the private reports I supplied (OT, SLT, etc) the judge ordered an assessment of needs. The assessment took place in the term that my son moved to the school (September 2018), which was a great time to assess as he had moved from a class of 10 where he was nurtured and hand-held to a class of 30 where he was expected to stand on his own two feet a lot more!
It is worth mentioning that the EP, OT and SLT reports provided by the local authority were all lacking in specific and quantified provision, which initially resulted in a meaningless EHCP (see graphic below).
The NHS OT report pretty much said he has no issues whatsoever, while our private OT report said the opposite! Our NHS SLT report only covered his areas of strength – so, of course, he fell into the average category in those areas, whereas our private SLT report highlighted areas of moderate and severe need. The NHS SLT was also told that she was not allowed to attend his annual review meeting because we’d had a private report written and had legal representation – suspicious, hey?
The LA EP reports we’ve seen have copied and pasted large chunks out of existing professional reports – I’m not sure what sort of quality of information they’d contain otherwise. In fact, the last EP report removed my son’s dyslexia diagnosis from her report and stated that he needs “a very high level of support”, but without stating what that meant. When questioned, she told me “I rarely suggest any specific level of training for any learning need as this can restrict access to appropriate provision. Teachers or other members of staff can be highly experienced and have all of the appropriate expertise without having a formal qualification and the worry about being specific is that if a school does not have a person with this qualification they may not agree to placement”. In other words, this EP was making him fit a school rather than stating his needs and ensuring that the school could accommodate them. When I challenged her, asking whether she felt her report met HCPC standards, she asked me to call her so we could talk on the phone, obviously knowing she wasn’t. I have taken the matter further with the HCPC under Fitness to Practice, because I hate to think of other EHCP parents having the wool pulled over their naïve eyes.
An EHCP is a legally binding document, specifying and quantifying the provision required for an individual child to make progress in the following areas: cognitive and learning; social, emotional, and mental health; speech and communication; physical and sensory. It is REALLY important that provision is not vague, so it is not open to all kinds of interpretation in order to make a child “fit”, as in the EP example above.
Our first draft of the EHCP was produced at Christmas, 2018. It contained such vague provision that it hardly made sense, so we then spent MONTHS appealing content.
Here’s why a well-written EHCP is important – can you imagine if your employer handed you a contract like this one?
We fought a very expensive battle to ensure that my son received specialist dyslexia intervention within a mainstream primary environment. A member of the LBAT team was assigned to him to assess and devise a programme, and to provide training to members of staff on dyslexia. Part of my reason for doing this was to benefit the wider school community. As an aside, I don’t think anyone has ever acknowledged that the additional dyslexia training was due to us spending thousands on private assessments and legal fees to enable this. A simple thank you goes a long way after such a vicious battle. Instead, I’ve simply had horrible treatment by other parents, implying that I’ve made a fuss over nothing, and had similar from the previous head teacher.
In the case of my child, once he had the right accommodations in place, he started making visible progress in all areas. However, when we started looking at secondary schools, we were very put off the “most convenient” choice by the use of terms such as “more able” and “less able” in the presentations we attended. We were shocked that anyone would be allowed to use these terms these days – but apparently these are accepted terms in a world that does not accept neurodiversity and disabilities. The world in which we live is about forcing everyone through the same sausage machine. Forcing kids with neurodiversity through this sausage machine causes long-term mental health issues. This is not about “more able” – many children with neurodiversity are actually far “more able” than their “neurotypical” peers, but simply need accommodations, such as extra processing time, readers and scribes, etc. This terminology is as offensive and unacceptable as calling someone in a wheelchair a “cripple”, or as ridiculous as expecting someone with a broken leg to set their own cast!
We decided to find a school that would accept my child as he is, and that would offer him the chance to reach his potential by incorporating the accommodations he needs into the school day. We found a tiny little school that specialises in specific learning difficulties and speech and language, with on-site SLT and OT, and where all teachers have a BDA Level 5 or above in dyslexia and/or dyscalculia, and he was instantly offered a place. Not only that, but he came out at the end of his two trial days begging to go to that school. We then had to fight the local authority for funding for the £11k per term fees, and for transport.
In order to fight for this provision, we had to hire a private OT (£800), SLT (£800) and EP (£2k +), as well as legal representation (£5k?). I would add that these fees are higher than usual OT, SLT and EP assessment fees because we hired professionals who were also experienced expert witnesses: this is sadly almost a necessity when trying to get a child into a specialist independent setting, as this almost always involves a tribunal hearing. Fortunately the OT and SLT reports provided by the NHS via school and the local authority were so lacking in detail that we have not even needed to go to court for our choice of school – HOORAY. Additionally, our SENCo said some extremely helpful things to our independently commissioned professionals as part of these assessments, and also in the Annual Review process last June, and we think this helped us secure our choice of school. Our legal representative also attended our Annual Review to ensure that important points we might have missed were picked up on. It is really shocking that this was necessary, of course.
I have since put in a Subject Access Request to find out what went on behind the scenes. I’ve seen some very unprofessional communications, including a rather interesting email from the LA to all professionals involved, which appears to prejudice the legal EHCP process for which I’ve now decided to seek legal advice – not for our benefit but for that of others. Influencing a legal process is a criminal offence. However, I’m apparently the big baddy in all this. Fairly obvious the second I walk through the school gates. I’ve also been asked to give my story to a journalist for Channel 4, which I am carefully considering how to do. My story won’t be unique by any means, sadly.
The reason why I’ve written this post that I think there is a big misconception about what an EHCP is and what it means for a child – even by some people who are teachers and even head teachers. For a child with mental health needs of any kind that are stopping them from achieving their full potential, or for children with severe specific learning difficulties or autism, who are likely to struggle at secondary school, it is EXTREMELY important that parents are aware of what an EHCP can mean for their child, and that there are other options than huge, potentially traumatising sausage factory secondary schools for them.
This is the same across the entire country – not just our little one-horse village or even the county of West Sussex. We are lucky to have a caring, tiny school, but as someone who has been through a stressful, lonely journey with very little support from school or other parents, I feel EHCP expertise is lacking. Not just here – everywhere. And other parents need to understand how this works too, so they can support friends and act on their Facebook posts telling the world their door is open for them at any time, blah blah… that door closes in your face when you start to question the broken system!
I strongly feel that parents need to know where they can access this information for themselves – even if they suspect that different learning styles/behaviours or a neurotype that has not yet been identified at preschool or school. I feel that preschool should also arm parents whose children have been identified as requiring extra support with this information.
Some parents do not want to know that their children require extra help, but perhaps this is because the world is not accepting of neurodiversity or differences in general. I do not feel that the parent school community has been accepting of my child’s needs either. We have had all manner of ignorant comments by other parents. Additionally, as parents, we feel that we’ve been considered pariahs due to the constant stress taking its toll, and this extreme lack of understanding by others. Sadly, I know I’m not the only one who feels like this.
My most important take away is that just because the average child at the average primary school gets a place at the average secondary school, fits the sausage factory mould, ticks all the boxes and goes through their secondary years in their blazer and tie, fending for themselves, fiddling on their mobile phone and being forced to grow up and fit in, it doesn’t mean that everyone has to take this route.
When I was a prep school parent, a kind mum invited me for coffee because she recognised that I was struggling. She talked me through her journey. She told me it will all be ok and that all I have to do is find out how to navigate my son through his education. She told me to find my tribe and not to bother with the average people. I’m eternally grateful for her advice! Now it’s my turn to offer others the same advice.
- Don’t trust anyone who works for your local authority – because they may well be thinking of budget rather than your child’s needs.
- Reseach the process thoroughly and remain a few steps ahead of your school and local authority.
- If possible, get someone to handle EHCP-related communications for you, as the process is overwhelming and stressful. In my case, I’ve been branded all sorts of things I’m not just because I continued to fight my child’s legal corner.
- Keep communications breezy and effervescent.
- Learn how to identify and deflect gaslighting.
- Remember that none of this is personal – it’s all about money.
Where parents can go for help and support:
Support/information groups on social media:
Reaching Families (however, this is not an expert group on EHCPs and some of the information is very in accurate)
EHCP for Parents and Carers in West Sussex – a West Sussex-specific support group, which allows anonymous posts for those in the legal process, to help parents through the process of applying for EHCPs plus appeals and finding appropriate schools for their child’s needs
Education Equality – high-quality EHCP legal advice
Not Fine in School – for parents of children affected by attendance-based anxiety
Real-life support groups:
Umbrellas – social group that gathers monthly around West Sussex, in-person and online
Reaching Families also has a befriending service for those who have recently received a diagnosis
SEND Advocacy services:
Education Advocacy Education Advocacy | SEN Advocates – accepts legal aid for those who meet the criteria
How to be Heard – How to be Heard | Facebook Amanda Sokell
Rochelle Sivitier – email@example.com www.ehcpconsultancy.co.uk