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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 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 we are hoping he will go to college next year.

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, 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.  The review has now been published and I will be writing a response to it. I am also 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 provision.
 
You can read more details of my campaigning here. You can contact me here about the book, or your own experiences of caring for and getting support for disabled children and young people.  


 JANE RACA