Failed by the SEND system: Five young disabled campaigners tell MPs government must ‘listen to our voices’

Five young disabled people who have been failed by the special educational needs and disabilities (SEND) system have told MPs that the government and education sector must listen to their voices if they want to fix the barriers they have faced.

Lucy Bowerman, Sarah Cobb, Joanna Hall, Katie Nellist and Madeline Thomas all gave evidence to members of the Commons education committee on Tuesday as part of its Solving the SEND Crisis inquiry.

They spoke of lengthy delays in diagnosis, failures in support during their secondary school years, the impact of these failures on their mental health, and the critical lack of resources within mainstream schools.

All of them had spent significant portions of their school years in mainstream education, but most had also spent some time in specialist settings or out of education entirely.

Lucy Bowerman said she had been “completely failed by the system”, which led to her spending “prolonged periods out of education”.

She told the MPs: “There are so many simple things that could have been done that just weren’t.

“I guess it’s alright to offer somebody support, but if you’re not offering them the right support, then what’s the point in doing it, because you can actually cause further trauma and further damage to people with not doing that.”

She said schools needed to ensure there was “flexibility”, including around the curriculum, and ensure they were “listening to the person and their family”, and “remembering that every person is their own unique individual, with individual needs, individual likes and dislikes, and it’s around tailoring things to that rather than insisting that people conform to social norms and fit into silly little boxes”.

Joanna Hall said that, at secondary school in Sheffield, there was only one SEN-trained professional in a school for about 1,000 pupils.

She said education settings need to be “considerate of what works for that particular person” and not always assume that if someone is unwell it is because of “exam stress”.

She said: “Because for me, that is the only thing I’ve enjoyed about school is the academics.

“Socially, I’ve struggled, communication, the sensory element of it, it was hell.”

She added: “In terms of making things better, I think having more options for people and considering what that particular person wants to do.

“Mainstream school is not equipped to deal with SEN effectively, but it could be, it’s a lack of funding.”

And she said the “academic focus on league tables” in mainstream settings “is a massive issue” because “all the teachers are so stressed by it, which then bleeds into the children”.

Sarah Cobb said her support at primary school had been “absolutely brilliant”, but it was when she moved to secondary school that the “support all started to fall apart”, although it was “brilliant” while she was in the sixth form and “really good” at university, where she receives disabled students’ allowance and the university has put adjustments in place.

But she said the uncertainty of whether she would receive the support she needs had been “really anxiety-inducing” and had “taken a toll on my mental health”.

She also said she had “really struggled” with inaccessible teaching materials, and the impact of having to spend time outside the classroom during practical demonstrations in physics lessons because of her health conditions, and also outside the sports hall during PE because she couldn’t take part, which she said “felt so isolating”.

Madeline Thomas said that “flexibility and empathy” were vital, and she told the MPs how much distress she experienced by having to conform to a series of rules around a new school uniform, which became “overwhelming”.

She said: “I think that is the heart of it, just empathy and being able to recognise that despite those rules and regulations, each child is a separate individual, and each child needs to be taken into account as a whole person, rather than a statistic.”

She told the committee that she and her parents had had to “fight” for the support she eventually received after leaving mainstream education.

She said: “I do believe that, especially from how vocal I was about my experiences and how much I was struggling when I was younger, the issues that I was having could have been noticed earlier.

“And I think that if they had, I possibly would have gotten much more support, and I may have been able to have stayed in mainstream education.”

Katie Nellist said the support she received had improved while she was at secondary school when she received an autism diagnosis, but she was “still unable to cope” and is now educated outside school.

Although she has an education, health and care plan (EHCP), it has changed many times because she was “moving provision a lot, because no-one could work out why I couldn’t go to school”.

She told the committee: “Every time you need to get a change with your local authority to the EHCP, you’re stuck waiting for such a long time because there’s always this back and forth and they don’t listen to you, and there’s always communication delays, and it just takes such a long time.

“Even if you are in crisis right now, there’s nothing you can do, you’re just stuck waiting, and that takes such a big toll on families, because you’re having to advocate for yourself constantly.”

She also told the committee that she believed the term “inclusive” was being misused by the education sector and it was being used “as a blanket term” that “just removes the nuances and the fact that people are individuals with needs that may conflict with each other”.

She said teachers needed to “sit down and have a long chat with each pupil and kind of understand what’s going on with them, and mainstream schools just do not have the resources to do it at all”.

She said that “smaller class sizes would help some people, smaller schools overall.

“School is really overwhelming, it’s just sensory overload constantly, constantly.”

Asked for their final messages for the government, all five spoke about the need for better communication and to listen to the voices of young disabled people.

Lucy Bowerman said the government needed to “listen to people like us and listen to their families and when you do that you will start getting all of the information you need”.

Madeline Thomas said the government needed “to keep young people within these conversations and to keep listening to our voices and to have us within those decisions”.

Sarah Cobb said they needed to “listen to the individual and make sure you include them in the conversation”.

Katie Nellist called on those in power to put the “youth voice at the heart of all SEND services and functions and everything including that young person” and for local authorities “to stop fighting families and start working with families and young people”.

And Joanna Hall said the government needed to ensure that they “don’t leave the working-class kids out of it” as their parents themselves often have education barriers that mean it is harder for them to advocate for their children.

Picture: (From left to right) Sarah Cobb, Katie Nellist, Madeline Thomas, Joanna Hall and Lucy Bowerman

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