Together for Short Lives has published a new guide to help families of children and young people with life-limiting conditions join-up their education, health and social care. Free to download and use, the interactive online guide helps families to understand their rights and make the most of the new special educational needs and disability (SEND) system, which is being implemented by government, the NHS, local councils, schools and others across England. It has been funded by the Department for Education and written by Anna Gill OBE, a parent carer of a young person with a life-limiting condition, on behalf of the Council for Disabled Children (CDC).
Many of the families of the 40,000 children in England with life-limiting conditions have to spend long hours co-ordinating the multiple appointments, services and professionals required to meet their often complex needs. For many parent-carers, this burden reduces the precious time they get to spend with their seriously-ill children and their brothers or sisters.
Together for Short Lives’ new interactive resource aims to give this time back to families by making it easier to navigate and find information about the new SEND system. It helps by describing the important parts of the system, including:
- what local offers, education, health and care (EHC) plans and personal budgets are, who is eligible for them and how they can help children and families
- what families’ rights are and how they can complain and appeal against decisions relating to their child’s assessments, plans and SEND provision
- who holds the local SEND system to account and how families can influence it.
I will always remember talking to a parent who told me that they found navigating education, health and care services to be like a minefield and that they were frightened going through it. They said that services didn’t join up and that professionals didn’t explain things to them. By the time the parent had made it all fit together, their child has passed away. Together for Short Lives’ new guide aims to help prevent these tragic situations and make sure that children with the most complex health needs get the joined up assessments, plans and services they need as quickly as possible. I urge families to make as much as use of our new guide as possible.
Barbara Gelb OBE, Chief Executive Together for Short Lives