‘I have not been to school since I was 13. The system is failing kids with special education needs’

I have autism, anxiety and post-traumatic stress disorder (PTSD) from the experiences I faced in my last year of primary school. I also struggled with an eating disorder and have experienced the worst of the education system, special education (SEND) system and the NHS. My PTSD wasn’t diagnosed until I was 16 and I have not been to school since I was 13. Since I was 16, I have been campaigning for change in the education and SEND system. I started out campaigning locally and then nationally. I have been on Woman’s Hour several times, met lots of MPs and attended many meetings and protests trying to make change. I also won the Nasen Young Advocate of the Year award in 2025. 

When I read the government’s schools white paper earlier this year, and their plans for reforming the SEND system, I was shocked and not in a good way. The proposed reforms were highly anticipated and had been delayed by the government several times. There was hope that this meant the government was taking time to get it absolutely right but, when reading the white paper, I felt like they could not have gotten it more wrong. 

This will be the biggest change to education in 30 years, but it feels like the government is gambling with an entire generation’s lives and futures. There is currently a consultation on the white paper ongoing, due to close on 18 May.

Read more:

• My children were out of school for more than a year as we fought to get them SEND support
• Families face a bitter fight for SEND support in the UK: ‘It nearly killed us emotionally and financially’
• Mainstream school was right for my daughter. SEND changes could cause more harm than good

My biggest concern with the white paper is that EOTAS (Education Other Than At School) is not mentioned at all. Those of us with EOTAS provision are a small but very vulnerable minority and currently our futures are up in the air. The big push was on mainstream inclusion and attendance and it seems that those of us out of school and unable to do those things have been forgotten about entirely. 

I don’t know if I have the legal right to an education any more or if my EHCP (Education, Health and Care Plan) will just vanish suddenly. Children and young people out of school long term deserve a suitable education as well but the government has forgotten about us. This is especially concerning as EOTAS has been on the rise recently – if school suddenly becomes the only place to get an education, anyone who cannot cope will have so many future opportunities taken away. Education is a right no matter where it takes place.

My next concern is around inclusion. The white paper claimed it will increase inclusion but, unfortunately, I only see these changes doing the opposite. The renewed focus on attendance and exams will only further sideline children who already struggle with these things making them less likely to achieve good outcomes. By prioritising standards alongside inclusion, it will force schools to choose to push results, sacrificing mental health rather than focusing on individual student wellbeing. Flexibility is key in inclusion, and the white paper seems more focused on changing the child to fit the school than making sure that schools can adapt to each child. 

The white paper also assumes that school is safe and the best place for every child. By not showing out-of-school education as a valid option, the number of children traumatised by being forced to go into unsafe unsuitable environments will massively increase.

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Schools are being incentivised to identify SEND students but the funding to support those students simply does not keep up with their need. This means schools will be stuck with large numbers of students needing support but no money to help them. It also means parents will be stuck in conflict with schools trying to get support for their children. The current system makes families fight local authorities and the new one will make them fight schools instead. This will fracture communities which schools are the very heart of. 

Another thing that worries me is the proposed changes to Education, Health and Care Plans (EHCP). Currently EHCPs are custom made to fit the needs of the child or young person it serves but the new system would make you choose one of seven “specialist support packages” (SSPs). This removes any flexibility and, in my opinion, is one of the worst blows to educational rights in my lifetime. I would not fit into any of these packages when I was at school or now. It erases the fact that children and young people are individual and have different needs, needs that cannot just be put in convenient boxes to suit the adults around them. What will happen if families fight for the highest level of support just to be met with entirely unsuitable options and a child that has been stretched too far and is broken? If needs cannot be met in the education system, those children and young people don’t just disappear, the health service will take the full force of these failings as well.

My last concern is that the government seems to have completely ignored reports from both the Education Select Committee and the Neurodivergent Task and Finish Group. Both reports took a lot of time, money and consideration to make but their evidence-based recommendations that have gone unnoticed by the Department for Education when making the SEND white paper. If reports with input from families have not been put into the white paper it makes you wonder what the priority was when making the white paper – improving outcomes from the SEND system or temporarily balancing the budget?

The government needs to start listening to families with lived experience of the SEND system. The consultation on the white paper only allows you to make very specific comments on the reforms when a rethink of this entire white paper is needed. I will continue to campaign for SEND reform until the government starts listening to the people with lived experience and works with us. How many children and young people have to be failed and their futures scarified until the government gives SEND students a truly equal right to education? We have so much to give to society. When will we be seen as people with lives rather than an inconvenience to budget?

Do you have a story to tell or opinions to share about this? Get in touch and tell us more. 

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