CEO Blog – Working together to make disabled voices heard

Written by Gen Dearman, April 2022

Over the last few weeks I’ve been reflecting on just how much is going on right now in our society, and in particular the issues that we are facing in the UK such as increasing food prices and rising energy bills. These changes affect us all, but from speaking to the parents and families that Challengers supports, I know that the impact of these cost increases for families with disabled children is greater.

A 2019 study by Scope reported that, on average, a family with a disabled child would have to pay £581 a month to have the same standard of living as a family with a non-disabled child. For almost a quarter (24%) of families with disabled children, these extra costs amount to over £1,000 per month, and for families with disabled children who rely on life-saving electrical equipment, their energy costs alone are set to soar to more than £3,000 per year.

Instead of focusing this post on the doom and gloom, I want to talk about how we can collectively take action to make a difference. Last week saw the launch of the #SENDABetterMessage campaign by the Disabled Children’s Partnership, which Challengers actively supports, and comes in response to the Government’s recent green paper: the SEND review. The paper recognises the wide array of issues that disabled children and their families are facing and outlines proposals to change this – many of which are welcomed – however the community also has its concerns.

Gen and the Guildford Pre-school team

One point in particular which I would like to highlight is the drive to make mainstream schools more inclusive, which is largely positive, however the worrying flipside is the recommendation to only let families pick from a pre-defined list of schools. It is highly likely that this will limit choice, meaning that children are unable to access a school that can offer the best support for their individual needs.

There are Challengers families who are currently struggling with this situation, putting them under an immense amount of stress and pressure, and in some cases into financial hardship. Here is the experience of one family we support:

“Our family is going through a really stressful time at the moment. Our son’s school have said they can no longer meet his needs and the Local Authority (who have never met our son) have decided that he needs to go to a Severe Learning Disability School which we know isn’t the right place for him. We’ve been left with no other option than to go to tribunal to fight this decision, at a minimum cost of £10k.

It’s an unfair and undemocratic situation, and takes a huge toll on our family. We are just two parents with no experience of fighting for the rights of our son, against teams of professionals who have spent years training for this. We won’t be able to recoup our costs even if we win, which means our whole family has to forego a lot, just so that our son can attend the school that will benefit him. Life can be unfair, but it is persistently unfair with a disabled child.”

This proposed change could have serious consequences for disabled young people, and we have seen this first-hand through the work of our 555 service, which provides urgent support to families of disabled young people who are out of education. Sometimes this is because their current school place cannot provide the appropriate support, or the lack of support has sadly led to their exclusion. The young people arrive in crisis, with their families often at a loss at what to do next, but our highly trained staff help them to reset, learn valuable life and social skills, and build their confidence in preparation for a successful return to school.

We know that reform is needed now more than ever, and listening to our parents we know that they want and need more support, but we want this support to be carefully considered and in the best interest of everyone. Challengers will continue to do its very best for disabled children and their families, but we need support from the wider sector and Government to make this happen.

So my ask is a simple one – please do take the time to reflect on the SEND review, make your voice heard and be part of the consultation to help us achieve a better system and a brighter future for everyone.