Tomorrow, the government is releasing a white paper that will lay out its plans for supporting children with special educational needs (among other things). This is a long-awaited paper that follows weeks and months of uncertainty, delay, and what can only be described as propaganda and consultation by media.
Those of us with disabled children have seen our families described in binary terms, with our experience squeezed into convenient boxes that suit the government’s desperate wish to save money. Comments from the general public on social media and “in real life” confirm one thing: the demonisation of disabled children and their parents has been staggeringly effective – intended or not.
And we are left tonight with the prospect of losing so much that should help us keep our children safe, well and alive that it is very hard to remain hopeful. We are still working with uncertainty, and there is no doubt that there is much work to be done once the white paper is published, when uncertainty yields to facts.
Tomorrow, I will open my files.
I will book meetings with schools during which we will discuss the fact that they are unable to deliver the special educational provision that a child needs (and that they are legally bound to deliver). I will remind them of their duty, and I will work with the local authority to remind them of their legal responsibility.
I will continue working with another family to ensure that school staff make referrals that arise from their observations of special educational needs. I will remind the school that “but the OT service won’t answer” is no reason for not making the referral – that their job is to identify and seek expert advice.
I will support young people to navigate the move into adulthood – that delicate overlap between education, social care and welfare.
I will meet a “dispute resolution officer” in a bid to secure the right support for a child before the hearing date in 2027.
I will work with families to help them navigate everyday life with a disabled child: we will talk about supporting sleep, how to cope when your child doesn’t eat, how to secure feeding and other tubes. We will take time to acknowledge that neither mum or dad is sleeping much at all, that there is nobody able to give them a break, that babysitters are never a part of their lives because their child is simply too complicated.
Tomorrow, I will take the next best step.
I have already started thinking about what that next step might be in the face of the leaks we have heard.
Everything I know from 25 years in the SEND world tells me that the plans discussed make little sense. I cannot see how the fairy tales can be implemented. I suspect many, many teachers will leave the profession. I suspect that more children will be harmed and that the burden on adult social care in years to come will be overwhelming as a result.
But despair paralyses me and makes me annoyingly useless. So I choose hope. Not the airy-fairy fingers crossed hope.
I choose the hope that makes me open those files in the morning and continue working within the system that is currently in place.
I choose the hope that will have me reading every word of that white paper and considering my response. The hope that will push me to contact any and all elected officials I can.
I choose the hope that sees parent carers of disabled children, and anyone who knows a family like mine standing up to the government and declaring:
Every child deserves an education that meets their needs.
Every child deserves to feel safe at school.
Every child deserves to live.
Tugboat SEND Navigation 