My children were out of school for more than a year as we fought to get them SEND support

As part of the Big Issue’s series on the special educational needs and disabilities (SEND) system, Elizabeth Padilla shares her experience of struggling to get support for her two children, who are both autistic and were out of school for 13 months because they could not cope in a mainstream setting.

I have twins, a boy and a girl, who are nearly 13. We realised quite early on that my son was autistic. When he was very young, we thought he was a daydreamer and that he would catch up, because he is a bright and articulate child. 

His Year 2 teacher noticed that he was struggling with handwriting and something wasn’t quite adding up for her. Then we went into Covid and schools were shut down. He was put on the SEND register and, because they are twins, our children went into a bubble together. It was the best time they had in school because it was a smaller group.

My son’s autism assessment was delayed because of the pandemic but we got a diagnosis in 2021. We applied for an Education, Health and Care Plan (EHCP), but we kept getting knocked back by the local authority. They claimed the school was not doing enough to support him.

Read more:

• Disabled people appointed to co-produce Timms review of PIP: ‘This opportunity cannot be wasted’
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• Children with SEND need support. The government must not restrict their rights

My daughter got diagnosed with autism in 2023. It was a bit easier for her to get an EHCP because her issues ended up being more pronounced. We had more evidence for her in that initial round, and eventually we had them both on EHCPs.

Our biggest challenges came when they transitioned to secondary school in 2024. There was this real sense that they should be in mainstream school. They’re both bright and academically capable. But at the time, my daughter was struggling with severe OCD, struggling to eat and struggling to be in school.

We ended up choosing a secondary school that was close to home, smaller than the others nearby, and not as rigid in their rules. We thought: “OK, that sounds a little bit better, a little bit more loving and nicer than some mainstream secondary schools.”

My children ended up both falling apart by December of Year 7. They were throwing up at the gates of the school. It was hell. All our lives were hell. We were quite lucky that we weren’t getting threatened with fines for school absence. The school was pretty understanding in that sense, but we all knew that the school was not right. It just was not the right setting for them. They need a small, loving, caring setting.

We had emergency annual reviews and chose a small, specialist independent school. They do one-to-one tuition and small group lessons but offer a full range of academics. We put in the request with their EHCPs and then it went to a panel (who had never met my children) and they kept saying that they have to stay in mainstream school.

I found out later that their mainstream school had written to the local authority in the summer prior to them starting to say that they could not meet their needs, which had never been shared with us as parents. The local authority refused to mediate with us. So we went to tribunal. As part of the tribunal, they went to pretty much every mainstream school in the borough, and all of them said they couldn’t meet their needs. And the panel still said no.

It wasn’t until December 2025 that the panel agreed that they could go to the specialist school. They have started there now, but my kids were out of school for 13 months. I think it’s had a knock-on effect. 

I run my own business [Hues Clothing, which sells sustainable and sensory-friendly kidswear]. My husband works full time. I’m also disabled and have a lot of chronic health conditions. We had to fight to get tutoring at home.

The knock-on effect of the stress it’s had on all of us has been massive. My husband’s job has suffered. My business has suffered. I’m probably going to have to close it down now. My health has suffered greatly. My kids have suffered the most.

We call 2025 the dumpster fire of a year. I lost my mother to a house fire in the United States and we were dealing with all of that too, and it felt like the local authority just didn’t care.

It’s only been a few weeks since my kids started the new school, but it has been life changing. My stress levels are down. My health is better within a few weeks. It’s been quite incredible the difference having my kids in a suitable setting has made. They are excited to go to school again.

My kids were socially isolated and their mental health deteriorated to the point that they both needed one-on-one sessions from children’s mental health services. Within a few weeks of the new school, they’re socialising again. They’re asking to meet up with friends again. They’re running into school.

I feel like I’ve become an expert. I’m now advising other parents, not in a professional capacity, but saying: “Look up these resources. Read this. Here are case laws that have been sent to me.” If it wasn’t for other SEND parents helping me, I wouldn’t have gotten to where we are now.

Why do we have to fight? I know there’s a funding crisis but there’s not enough provision for in-between kids. If you have a profoundly disabled child, there are specialist schools. But there’s not really much around for children that aren’t profoundly disabled but do have SEND.

We need systemic change in education. It’s not fit for purpose. I think we really need more holistic schools. We need more teachers, and more schools, so that they don’t have to be in classrooms of 30 kids. There needs to be more provision opened up for the in-between kids so that they’re not taking the resources of mainstream teachers.

When my kids were in mainstream school, they needed so much extra help. That takes away from the other kids in the class. They have never been naughty kids but they just needed extra support. If we could create schools that were more comfortable to be in for neurodivergent kids, they are going to be great for everyone.

With twins, I am paying double. The paperwork is double. And it all came at the exact same time. We’re hopefully through to the other side, but there will be more challenges and fights to come. My hope is that they learn to advocate for themselves when it comes to whatever they want to do. As parents, we’re putting things in place for them, but I hope there are welfare systems that support them, because there’s so much negativity around disability in this country.

All of the teachers and special education coordinators I’ve spoken to, the people on the ground doing the work daily, get it and they’re all frustrated. But the local authorities and the decision makers don’t get it.

How do we get through to them? How do we get through to the government that this underfunding is going to create a bigger problem in the future? If my kids have been forced to stay in mainstream school and if I hadn’t advocated to get them tutoring last year, they would have had 13 months with absolutely no education and they would still not be in school.

If they have no education, what do their future prospects look like? What happens to their mental health if they have nothing? If you’re not funding the SEND system, you’re going to create more of a burden on the welfare system and on the NHS, with people not working, needing more medical care, more mental health care, more social services. It’s about putting the funding into SEND education so these kids don’t need as much support when they grow up.

Response from the Department for Education

Responding to the Big Issue’s series around the SEND system, a Department for Education spokesperson said: ”These heartbreaking cases show why it’s so crucial we strengthen support for children with SEND and ensure families get help earlier and closer to home.

”We know too many parents are forced to fight for support, with rising demand meaning children’s needs can escalate to crisis point before help arrives. That is not good enough – and our reforms will mean more support for children, not less.

“Our reforms are designed to strengthen support for children and ensure help is delivered earlier and more consistently. We have already committed to unprecedented long-term investment, including £200 million to train teachers in SEND and at least £3 billion to create 50,000 new specialist places, and there will always be a legal right to additional support for children with SEND.”

Despite these reassurances, there remain fears that SEND support will be reduced rather than enhanced.

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

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