Welcome to Standing up for James, the website of Jane Raca, author, lawyer and campaigner for the rights of disabled children.
My second son, James, was born in 1999, 15 weeks early and with severe brain damage. James has cerebral palsy, epilepsy, learning disabilities and autism.
Ten years later I began writing my book, Standing up for James, which was published in 2012. It’s the story of our day-to-day struggles in coming to terms with James’s disabilities, and trying to get support from our local authority. We ended up in utter despair, and completely overwhelmed.
Rosa Monckton, President of KIDS charity and a tireless campaigner for the rights of disabled children and young adults, wrote the foreword for Standing up for James. For more about the book:
Though James is now receiving the day-to-day care and education he needs in a residential school, it’s not the end of the story. All over the UK, children with varying degrees of disability are unable to get the equipment and support that they need. The impact of all this on those children, their parents and siblings can be devastating.
I want my book and this website to be part of the debate on the Children and Families Bill. The Bill reforms the system for providing for children with special educational needs and disabilities. It is currently awaiting the report stage of the parliamentary process, before its third reading in the House of Commons.
Whilst I welcome the move to more integrated planning for disabled children, I have concerns that parents may not be able to ensure that the plans are fulfilled. You can read my views here.
You can contact me here about the book, or your own experiences of caring for and getting support for disabled children.