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 extensive 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 Act, which came into force on 1 September 2014, should improve the current system. However, the extent to which it makes a real difference will only become clear when it has been applied on the ground, on a national basis, for some months.
You can read more about the campaign I worked on, to try to ensure the Act strengthened the rights of parents to get better access to social care. This campaign is not over, since the Act provides for a pilot scheme about this which has yet to be put in place. The outcome of that pilot scheme could make a big difference to the ability of parents to get the social care their children need.
You can contact me here about the book, or your own experiences of caring for and getting support for disabled children.