Standing up for James, the website of Jane Raca, former lawyer, now author,
speaker and campaigner for the rights of disabled children and young people.
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 a specialist residential school and he has
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.
You can read more about the campaign
I worked on, to try to ensure the Act strengthened the rights of parents
better access to social care. This campaign is not over, since the Act
for a pilot scheme for the tribunal judges to make recommendations on health and social care issues. The outcome of
pilot scheme could make a significant difference to the ability of
get the social care and health provision their children need.
I have just submitted evidence
to the Lenehan review into residential special schools, which
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 young people.