Welcome to Standing up for James, the website of Jane Raca,
former lawyer, now author, speaker, and campaigner for the rights of disabled
My second son, James, was born in 1999, 15 weeks early and with extensive brain
damage. James has cerebral palsy, epilepsy, learning disabilities, autistic
spectrum disorder and challenging behaviour. He is also clever and has a great
sense of humour!
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 by the lack
of joined up thinking and resources. Eventually we found our way through the
system to get James into his first specialist residential school, Dame Hannah Rogers in Devon. He flourished there and in 2012 became a permanent resident. However, in 2014 he had to leave very suddenly when Ofsted suspended Dame Hannah's for management failures. He now lives and goes to school at Seashell Trust in Cheshire.
In 2014 the Children and Families Act came into force, requiring local
authorities and health services to work together and produce joint
education, health and care (EHC) plans for children with special educational
needs and disabilities. However, parents can only appeal to a legal tribunal in
connection with the education part of the plans. This is an artificial divide
for the most disabled children, whose needs are extensive and overlapping.
During the passage of the Act, I campaigned alongside disability charities for
the right of appeal to Tribunal over all parts of EHC plans. We achieved a
partial victory, in that a pilot scheme was introduced, allowing the Tribunal
judges to make non-binding recommendations on the health and social care parts.
You can read more details of my campaigning
Following this, the Department for Education (DfE) commissioned the CEDAR team at Warwick University to evaluate how the
new Act, including the pilots, was working. Along with other parents, I gave
evidence to CEDAR about my family’s experience of going to Tribunal. In March
2017 the DfE produced a report announcing that the
pilots would be rolled out nationally for a further two years, starting 2018.
This is very encouraging news.
In March 2017 I submitted evidence to the review
into residential special schools, chaired by Dame Christine Lenehan and co-chaired
by Mark Geraghty, CEO of Seashell Trust. This sets out in detail why joined up
thinking is so important for children with complex needs.
You can contact me here about the book, or your own
experiences of caring for and getting support for disabled children and