Free to download and use, the Together for Short Lives 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.  Funded by the Department for Education it was writte by Anna Gill, a parent carer of a young person with a life-limiting condition, on behalf of the Council for Disabled Children (CDC).  It aims to give 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.

Barbara Gelb OBE, chief executive of Together for Short Lives, said: "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."

Download the guide here