Single, joined-up education, health and care (EHC) assessments, plans and personal budgets for children and young people up to the age of 25 are only available to children and young people in England who have a special educational need. We are also unclear as to how the government’s approach to personalising palliative care for children and young people, which is also underpinned by joint plans and budgets, correlates with the SEND system.
At both national and local level, responsibility for the support that disabled children need – including those with life-limiting conditions – sits with a range of organisations. All too often, the needs of disabled children and their families are not the priority within those services; and no-one sees it as their responsibility to ensure that services join-up and meet the needs of families.
The existing law related to disabled children and their families stems from over 10 different Acts of Parliament, regulations and guidance which have developed over the past 50 years. It is difficult for parents to navigate; and it leads to different services and agencies shifting responsibility between themselves, and with families falling between the gaps.
What would Together for Short Lives like to happen?
We ask the government to:
- make sure all seriously ill children in England have the right to an integrated assessment, plan and personal budget.
- commission a review of health and social care law, to simplify and strengthen rights and entitlements for disabled children and their families, including seriously ill children.
- work with parents to clarify existing legal rights and entitlements.
- make disabled children a priority across government, at both national and local level.