About 1.6 million pupils with Special Educational Needs or Disabilities (SEND), including nearly 576,000 children and young people who have an Education Health and Care Plan (EHCP), have recently gone back to schools across England or have joined for the first time. Spare a thought for the many of them who are going to unsuitable education settings or without the right support in place because the appropriate help is not available to them.
We know that the SEND system is in crisis. Obtaining an EHCP is currently seen as the only sure way to secure support. However, in England, it is also common for local authorities to issue vague, unclear, poorly written EHCPs. In many cases, the result is that children or young people do not receive the support they need, or sometimes, they receive no special support at all.
This means that families are forced to fight hard to ensure that their children receive the provision they are legally entitled to. If the language in the education plans is vague, enforcement of the plans becomes a daunting battle.
To address the problem, Ekaterina Harrison, a solicitor and volunteer for the charity SOS!SEN, has recently published a handbook for parents and carers to help them navigate the SEND minefield.
Here she talks to Learning Disability Today about why it is important to have effective systems to support the academic and personal growth of pupils with SEND, while also safeguarding their mental health and ensuring the long-term well-being of everyone involved in their care and education.
An ECHP is a legal document that specifies a child’s or young person’s SEND, the outcomes that are sought for that child or young person, and the special educational provision that is required to meet their needs, together with relevant health and social care provision.
The legal aspect is important, as plans are made and looked after according to rules set out in the Children and Families Act 2014. Obtaining an EHCP grants legal entitlements and protections, which can be enforced through an appeal to the SEND tribunal, judicial review or other means. An EHCP also provides parents or the young person with a conditional right to choose their preferred school or college.
Yet EHCPs that are not well written can end up being empty documents. I say that you should imagine a poorly drafted EHCP as a chocolate teapot; it may look appealing and have fancy words written all over it, but when it is put to use it quickly melts away without providing any valuable assistance. The plan, like a teapot, needs to be fit for purpose. That is why it is vital to ensure that the EHCP is written carefully to provide clear guidance and support for the child’s or young person’s education journey.
There is a lot of neurodivergence in my family and I started to advocate for my children quite early on. This led me to look at my own neurodivergence, and I was diagnosed as autistic last year. I also have a brother who went missing five years ago this summer. He was neurodivergent and struggled a lot with his mental health. The question of what happened to him continues to occupy my family’s thoughts. We remain unsure of his fate but have never ceased our efforts to find him.
This bleak reality is sadly all too common for neurodivergent individuals, many of whom struggle to cope with the challenges of life. Undiagnosed conditions such as autism can lead to a variety of mental health issues. The mental health stigma exacerbates the situation, making feelings of shame unbearable for some.
The statistics in this field are alarming. According to an International Society for Autism Research policy brief published in 2021[1], studies conducted across different countries such as the US, Sweden and Taiwan reveal troubling trends. For instance, autistic people are up to seven times more likely to die by suicide and six times more likely to attempt to do so compared with the general population. This risk is even higher for autistic individuals who do not have any intellectual disability. Autistic women are at a staggering 13 times higher risk of suicide compared with non-autistic women.
The situation with my brother’s disappearance took me by surprise. I didn’t know that things like that could happen. It is something that I always keep in mind when people question why I advocate for my children so relentlessly; or why I help others through this complex and challenging process, through my own work with SOS!SEN.
All the above underscores the critical importance of gaining early diagnoses and setting up comprehensive support systems. It is so important that children’s individual needs are met. For many neurodivergent people, timely intervention and appropriate assistance can be the difference between life and death.
My eldest son’s secondary school placement broke down and I had to appeal to the tribunal and file for judicial review. I found that in this situation, the most helpful people were those who had already navigated the process. SOS!SEN offered more than just therapeutic advice; it offered useful legal advice. I wanted to pay that favour back. Of course, with three children with special needs and a full-time job, it is difficult to find time to volunteer, but my law firm Katten is generous in its allowance for pro-bono work. It allows me to use some of my working hours to work as a volunteer. Without its support, I don’t think I could do that.
When I came up with the idea for my book The EHCP Handbook: How to Make an Effective Education, Health and Care Plan, I knew that writing it would not be easy. The book is intended for families who have children and young people with SEND. Given the likelihood that many readers have diverse learning styles, I knew I had to consider carefully how to adjust my writing to meet their individual needs.
ECHPs are legal documents, and the subject of law can be intimidating to a lot of people, so I thought about how I could make it accessible to them. That’s why the book is full of visual references and metaphors such as the chocolate teapot. There are also many stigmas associated with having a child with an EHCP, so I also wanted parents to feel better and more optimistic about their children’s futures.
Metaphors help to bring complex legal ideas to life in ways that are relatable and easy to grasp. They also encourage readers to think critically about the broader implications of the issues discussed. For example, I talk about a language trap known as “weasel words”. This phrase describes words in legal documents that suck the meaning out of other words around them, in the same way that a weasel sucks the insides out of an egg and leaves just the shell.
In practice, weasel words are tricky phrases that sound important, but they are actually vague and confusing. People use them to avoid saying something definite so that it will be easier to change their meaning later if necessary.
In an EHCP, for example, it might be stated that a child is entitled to “up to” 10 hours of additional learning support per week. However, the weasel phrase “up to” suggests that the 10 hours is not a fixed amount, or that someone else will decide the amount. So, the child might end up with no extra help at all, since zero is included in “up to”.
Legal books should be written in ways that are easy to understand so that more people can grasp complex legal ideas. This makes the legal system more open and fair. I hope readers will find my book helpful. The main thing I want is to help support the rights of children and young people who have SEND so that education is made more accessible and inclusive for all.
I think there has been a general under-investment in education. That is why we have seen breakdowns of placements and children going without education. There has also been greater recognition of certain conditions such as autism and attention deficit hyperactivity disorder of late. It wasn’t always there. Children used to be branded as naughty instead, or their behaviour was seen as the result of bad parenting. Now we understand that it’s not, it’s just due to difference. This has created increased demand that children’s SEND be recognised, because we have better knowledge, better research and better understanding. These children have a right to have adjustments made.
We used to drive cars without seat belts because we did not know they were needed, and while many who were involved in crashes managed to survive, many did not. Similarly, now that we have a better understanding of neurodivergence, it is essential to ensure that our children are safe and supported. All such adjustments come with the knowledge we have gained over time, and knowing about potential harm and doing nothing is simply unacceptable.
In my opinion, the SEND tribunal is currently the only mechanism that truly holds the SEND system accountable. The problem lies not with the laws themselves, but with how local authorities are handling them. The 2014 SEND reforms were intended to create a fairer, more effective process to support children and young people with SEND, but many local authorities have instead focused on budget cuts rather than fulfilling their legal duties.
In 2023, local authorities had a success rate of just 1.7% in SEND tribunal cases, meaning that families won the vast majority of cases. This highlights that local authorities frequently make unlawful decisions.
Reports from the Local Government Association in 2022 and 2024 reveal that many local authorities justify policies that conflict with the law by claiming that they are addressing imbalances in the SEND system. They argue that these policies distribute limited resources more fairly and prevent wealthier families from gaining advantages.
However, this rationale is flawed. It overlooks how the implementation of these policies delays or denies the provision of essential services and therefore undermines the equity and fairness that the local authorities claim to promote. Local authorities must be held accountable to follow laws that are designed to protect and support all children and young people. The focus should be on ensuring that everyone receives the help they need, not on policies that seem fair but actually deny services to those in need.
While many local authorities follow their own policies, the SEND tribunal is guided by law, which is what we need—laws upheld and our rights secured. Without the SEND tribunal, accountability in the system would collapse, and this would make it far harder for families to ensure compliance with the laws that are designed to protect vulnerable children and young people.
In my view, there is an argument for expensive, specialist provision. In some cases, mainstream provision can feel like a warehouse provision of education for children as it is streamlined and optimised to be cost-effective. It shouldn’t be a surprise if you have optimised everything so much that when someone comes along who is different and cannot cope, they fall through the cracks. Bespoke, tailored provision costs more money and there is no getting around that.
I think the whole system needs a change in mindset. Local authorities sometimes blame parents for the rise in the number of requests for ECHPs and tribunals. There has been a lot of talk, especially in light of the recent LGA report, about how only the affluent, sharp-elbowed middle classes benefit from the SEND system because they can afford tribunals and evidence that is obtained privately.
I believe this reference to “affluence” was made in the LGA report that was issued in 2022, and the narrative seems to have persisted. This is being done without much understanding or acceptance that parents are making fair requests for a child or young person to have special educational support because they have SEND. Families are not asking for special treatment ‑ they are asking for their children’s legal rights to be respected.
We also probably need to reassess our approach to discipline of children at school. Are we throwing potential out for the sake of compliance with uniforms and rigid rules? It is heartbreaking when you hear stories of children who achieved high scores in their SATs in year six at primary school, but when they moved to secondary school, the placement broke down because the child couldn’t follow the rules in the bigger secondary school setting. Then they can go months without education.
People think that strict military-style rules work in schools and produce results, but I think someone needs to look more closely at the collateral damage it can cause some children and not only children with SEND.
A lifetime of masking and trying to fit into a setting that is not appropriate for a person can have a huge toll on mental health. In school, such efforts might come at a huge personal cost to the young person, and the damage might last for years. Some people might reach breaking point, and this is something that cannot and should not be ignored.
It has been amazing. The book seems to be creating a world of its own – a sort of an EHCP Handbook space, with its little rituals and traditions. It has become a tradition among SOS!SEN volunteers to share photos of their pets alongside the book. This beautifully captures the warmth and strong sense of community within SOS!SEN. These photos also offer glimpses into the lives of the wonderful volunteers who dedicate their time to helping others.
I believe it is important to challenge the narrative that “affluent families” are monopolising resources, as in effect, it unfairly shames everyone who seeks help. The existence of SOS!SEN demonstrates that support is accessible to people of all levels of affluence. I wrote my book to spread knowledge about EHCPs and to empower everyone to advocate for their loved ones or to be self-advocates. It is great to see families helping each other. This is truly beautiful.
The EHCP Handbook How to Make an Effective Education, Health and Care Plan: A Guide for Parents and Carers is an accessible, illustrated handbook which provides guidance on how to make an effective Education, Health and Care Plan for young people with special educational needs.
You can view a sample here.
[1] See: https://cdn.ymaws.com/www.autism-insar.org/resource/resmgr/files/policybriefs/2021-insar_policy_brief.pdf
