I’m worried that even more disabled children could get lost within the SEND system after reforms

The government has announced a series of reforms which will see billions of pounds of funding injected into the special educational needs and disabilities (SEND) system over the next few years. But there remain concerns that children could get “lost” within the system as experts argue that some measures may amount to “cost-cutting”. 

As part of our series on the SEND system, Cara Roughani, co-founder of SEND Protect and mother of a seven-year-old boy who has autism, shares her experiences and explains why she remains concerned about the government’s reforms.

I’m a single mum to a little seven-year-old boy called Jayden. He was diagnosed with autism when he was four years old, but our journey with the SEND system started when he was 18 months old. 

We went through a horrible two years of being passed from pillar to post. I phoned my doctors every day asking for help. He was head-butting the floor and throwing himself downstairs and hurting himself, and no one would help me. 

I was passed from doctors to children’s mental health services and just told that I would have to wait. The only reason I eventually got an appointment after months of calling was because I reached absolute breaking point and made it clear how desperate the situation had become. No mum should ever have to feel that way.

I was told that it was a fast track and that he would receive a diagnosis within two years, but again I had to chase and chase. A health visitor encouraged me to make a complaint because she thought he had been lost within the system, so I did. 

The issue I faced was that every single professional was telling me he was autistic, but no one was putting it in writing so I could access support. It took me two years to get the official diagnosis.  

You think that once you get a diagnosis it will wave a magic wand and everything will fall into place, but there is still very little help. You’re then smashed in the face with the challenge of applying for an education, health and care plan (EHCP). 

You win one fight and then there’s another fight. As parents, we’re always up against some battle. It’s just so tiring. It affected my mental health a lot.

I’m lucky to have good family support and good friends around me. But for me, it meant I couldn’t work. I lost one job because I needed extra time off to look after Jayden. I was lucky that somebody else gave me a job and was much more flexible, but the financial strain was huge. It’s a very lonely place being a SEND parent because you don’t feel like anybody else understands.

Now I know there are amazing groups and support networks, but I didn’t even know there was such a thing as a parent/carer forum then. No one tells you that. No one told me that I could have been claiming disability living allowance (DLA) to help with the financial strain. We have to learn these things from other mums and dads. 

Read more:

• What will the SEND reforms mean for families and their disabled children?
• It was a traumatic, hellish fight trying to get SEND support for my daughter
• Meet the dads who started a podcast about their experiences raising autistic children

I’ve worked in finance for more than 20 years and I realised that a lot of families are given incorrect information or there’s not a lot of information out there about what to do to protect your children’s financial future. That’s when I decided to set up SEND Protect, so that we could give families information.

Every parent’s biggest fear is what will happen to their children when they are no longer here. When you’re a SEND parent, you feel like you need to live forever. Our children are so vulnerable. Who is going to look after them? Is there enough money? My son will never be a burden to my family – but he could be a financial burden, without planning.

Jayden is doing really well now and SEND Protect is thriving. We’re able to help people put plans in place. We’re two mums on a mission to help as many people as we can. The biggest challenges for me as a SEND mum were the loneliness and the financial pressures, and that’s why SEND Protect was created to offer free financial education to SEND families.

Jayden is in mainstream primary school and there have been times when he has really struggled. I remember going to the Christmas fair – all the children were singing songs, and Jayden was in a dark room on his own. It broke my heart because he loves to sing and dance. Some schools aren’t equipped for every child’s needs.

Jayden is what I call a ‘SEND-betweener’. He’s bright and capable and would likely feel out of place in a special school right now, but he struggles with big classrooms. I’m dreading secondary school. My son has an EHCP, but it’s not always followed properly. 

I don’t believe the current system is working, and while I understand that the government is trying to make changes, I’m concerned about whether the proposed reforms are the right ones.

I understand there are budget pressures, but my son still deserves the best education possible and the support he needs to thrive.

We need more schools for the SEND-betweeners, and we need more schools to have sensory rooms and soft play areas. Children with SEND need regular movement and sensory breaks. They cannot be expected to sit and learn all day without support. When Jayden has breaks, he can concentrate much better. That’s where I believe funding should be directed.

Teachers are already under so much pressure. I don’t have all the answers, but I do know there are serious gaps in the system. And I’m concerned about the amount of children who could get lost in the system, more than are already getting lost now. 

More children are getting diagnosed, but there are not enough schools and not enough teachers. There are not enough people who understand. It’s good that there will be more money to train teachers to understand special needs – but there’s autism, cerebral palsy, all different types of disability. How can you possibly train teachers in everything they need to know? 

I want my son to have the best education possible. I want him to be able to learn to read and write and so that he could potentially work one day, but he might not be able to. If he cannot get into a school with the right provision, once these changes come in or his EHCP is taken away, I will have no option but to homeschool him.  

If I’ve got to homeschool my son, when do I work? When do I earn money? That’s more strain on the government because you will have more parents claiming benefits because they can’t work. It’s like a vicious cycle. It is a very scary place right now.

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.”

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

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