When you become the parent of a disabled child, it goes like this. First, you have to come to terms with the things that make your child different to other children, and with the impact of those things on your family and your expectations about how life would be.
Then you have to start having fights. You find yourself having to convince the people and authorities who make decisions and manage budgets that your child really does need the things they need.
You get a diagnosis and you have to become an expert. No one appears at your side to say ‘this is what your child needs, and this is how to get it’. Finding information about what might exist in your area and how your child might access it resembles a particularly frustrating and unreliable game of Chinese whispers.
That is why Disabled Children: A Legal Handbook is such an important resource for parents. Newly updated to reflect the Children and Families Act 2014 and the new SEND Code of Practice, it is a comprehensive guide to the law on everything from educational assessments to housing adaptations. It is crammed with detail while being easy to read and navigate, with a useful summary of legal entitlements at the start. The second edition contains extra information on the transition to adulthood and a helpful new chapter on the range of legal remedies that exist.
Authors: Steve Broach, Luke Clements, Janet Read
£50, Legal Action Group
The authors say: ‘Parents may find that they have to be extremely well-informed and persistent.’ They are not wrong. This book gives us as parents the information we need and the tools to persist. When we understand the legal obligations that statutory organisations have to our children, we will not be fobbed off with ‘we don’t do that here’ or ‘that’s not in the budget’.
It is more than just a legal handbook. It is a call for disabled children to be fully valued and included, and for their lives to be understood. The introductory chapter sets the tone, describing with empathy the obstacles that get in the way of the ordinary life that families with a disabled child aspire to live. You realise you’re not alone against the world, even if it sometimes feels that way.
Catriona Moore is a policy officer at the National Autistic Society and the parent of a child with complex needs