Welcome to Standing up for James, the website of Jane Raca, former lawyer, now author, speaker, 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 severe 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 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, respite and support that they need. The impact of all this on those children, their parents and siblings can be devastating.
The children and families bill, which is due to receive Royal Assent in spring 2014, should improve the current system. However, the extent to which it makes a real difference will only become clear from September, when it starts to be applied on the ground, on a national basis.
You can read more about the campaign I have been working on to change the part of the bill relating to appeals from decisions by local authorities.
You can contact me here about the book, or your own experiences of caring for and getting support for disabled children.