In my thirties I had a successful career as a partner in a
national law firm. I specialised in commercial disputes for banks. Then my
world changed when my second son, James, was born 15 weeks early with extensive
brain damage. My career as a solicitor proved unsustainable and so I now devote
my time to managing James’s life and to writing, speaking and campaigning on
disability issues. James has cerebral palsy, epilepsy, learning disabilities,
autistic spectrum condition and challenging behaviour. He is also clever and
has a great sense of humour!
In 2012 I wrote my first book, Standing Up for James. 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. He is now 18 and will be going to college next
year. After that we are not quite sure what the future holds.
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.
For their families, short breaks can be critical in order to survive. For
the child, occupational therapy services can be as important as learning to
read and count.
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.
In March 2017 the DfE produced a report announcing
that the pilots would be rolled out nationally for a further two years, and the
nationwide pilots began on 3 April 2018. This is very encouraging.
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. I am
working on a sequel to Standing Up for James, as our family has
continued to have a roller coaster existence in getting him the right
You can read more details of my campaigning here.
You can contact me about the book, or your own
experiences of caring for and getting support for disabled children and
young people (see below).