As CEO of Sense, a crucial part of my role is talking to decision-makers about the issues that affect disabled people’s lives, with evidence that is rooted in the views and experiences of families and individuals that we support.
On 30th September I was honoured to give evidence to MPs at the Public Accounts Committee in Parliament, as part of their inquiry into Support for Children with Special Educational Needs and Disabilities (SEND). I was invited as CEO of Sense and in my role as Vice-Chair of the Disabled Children’s Partnership (DCP), a coalition we’re part of that campaigns for improved health and social care for disabled children and their families. This was a unique opportunity to share some of the challenges experienced by children with SEND when trying to access the right support as well as some of our suggestions for improving outcomes.
I was joined on the panel by Philippa Stobbs from the Special Educational Consortium, Matt Keer, a parent and contributor for Special Needs Jungle, and Mrunal Sisodia, chair of the National Network of Parent Carer Forums. Each witness was able to offer their experience and perspective, whether as a professional or a parent, but we all reached the same conclusion, the system isn’t working well for disabled children and young people. During the session we discussed a wide ranging number of topics and areas where we think the system needs to be improved. From my perspective, there were four key points that I wanted to raise on behalf of the children and families that Sense and the Disabled Children’s Partnership represent:
- We need a more joined up system so that families are well supported and don’t lose out: families tell Sense consistently that education, health and social care services don’t work together well. Research has shown that 83% of children and young people with Education and Health Care Plans (EHCP) are not receiving any funding from health and social care budgets to support them. There is a lack of joined up planning for young people’s futures, and transition to adult health and social care services is often not included in EHCPs at all.
- Give it back – the Government need to plug the funding gap: there is a £434 million funding gap for disabled children’s social care services, and there is an immediate need to plug this gap and invest in these services. We know through our work as a service provider how much disabled children and their families need more support. Whether they are struggling to pay for a wheelchair, can’t get the right support at school or need an essential break from caring through respite services, many families are reaching breaking point, and this has to change. These barriers make it much harder for families and children to participate fully at school. This is something we’ve been calling for as part of the Disabled Children’s Partnership, of which we are a founder member.
- Specialist support services are being cut: Many children now struggle to access specialist sensory support services due to cuts by the Local Authority, not only in mainstream schools, but in special schools too. Local Authorities need to do more to ensure they’re aware of upcoming needs, and plan services accordingly, to ensure children with sensory impairments are able to access the support they need to participate fully in school.
- We need to redefine success and outcomes: for the children and young people we support, we need to move away from some of our traditional ways of constructing outcomes in quite short-term, narrow education objectives and more into how we are going to support this young person to be as independent as possible, to have relationships, friends and so on. There are some young people who have some very complex needs for whom the outcome is never going to be employment, but the other outcomes are just as valuable including independent living, communication, control or even just confidence. It’s vital that the education system recognises and celebrates the success of disabled students in a meaningful way.
On leaving the session, I felt encouraged at the consensus in the room and the priority that the MPs in attendance put on fixing the system for disabled children. We know that there’s a long way to go but hopefully this signals that we are on the way to seeing solutions brought forward to give disabled children and families the support that they deserve. We won’t stop until the system is fixed, once and for all.