Our interactive guide aims to help families of children and young people in England with life-limiting conditions join-up their assessments, plans and services across education, health and social care.
Update: This resource for parents was written to support families through the introduction of what was a new system in 2014. The law has not changed since then and the information in this guide remains correct but the context needs updating. It will be reviewed and amended after the national SEND review announced in September 2019 has been completed.
Free to download and use, it helps families to understand their rights and make the most of the special educational needs and disability (SEND) system, which is implemented by government, the NHS, local councils, education providers and others. 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.
Our guide aims to help by introducing the following topics and linking to other useful information and support for families:
- 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.