My Lords, I add my strong support to Amendment 181. My noble friend Lady Hughes has just refereed to Jane Raca. Anyone who has read her book, Standing Up for James, will know that there is an urgent need to improve the current system of support for families with disabled children. However, the Government’s proposals for appeals risk creating an even more complex system than already exists, with different appeals or challenges having to be made simultaneously, as we have heard, about different parts of the EHC plan to different bodies.
In her book, Jane Raca recounts the situation of her local vicar’s family. The Tomlinsons have six children, including Edmund, who is 14 and severely autistic. Ed does not speak and has no sense of danger or of what is socially appropriate, He is very often awake at night, meaning that Matthew and Joanna, his parents, have very little sleep. Although Ed’s statement provides for him to attend a weekly boarding school for autistic children, he is at home every weekend and all school holidays. Despite that, his parents receive just 27 nights’ respite a year, which they try to eke out during the school holidays. They got that only when they broke down completely in front of their GP.
That is far too little support but, as Joanna Tomlinson says, she just did not have the strength to fight for what the family needed and for Ed’s needs to be looked at holistically. The Bill holds out hope for that.
Joanna knew that her local authority would not have agreed to fund both the education and the social care provision, and that she would have had to fight to appeal on both fronts. The Bill will perpetuate that unless we accept these amendments. If we do not, parents will still have to face three different processes if they wish to challenge the content of EHC plans. I urge the Minister to accept this amendment.