Thursday, 15 May 2014

drawing of lines

I haven't had a response from anyone in the County Council yet to the email I sent on Tuesday. 
Dear Mr <Learning and Achievement Operations Director>
I am writing to ask for your help in getting my daughter to school and to and from her physiotherapy activities.

Our five year old, N, is severely disabled with an undiagnosed, but progressive and life-limiting, genetic condition. We have just moved her (this term) from < > school to < > because < > has a greater breadth of experience and track record dealing with children with complex needs than her previous school. Her intellect and delight in social interaction mean that main-stream school is still best for her rather than sending her to a 'special' school.

One of the other things that was important to us in our choice, rather than < > School, was that County transport would be available for her. This is set out in a letter from < >, our SEN Caseworker, on 17th March. N needs to travel to and fro in her wheelchair, which is the standard type that goes in and out of vehicles. She can also currently travel in a specially adapted car seat, but this has become problematical because she is getting bigger and there are manual handling concerns transferring her across.

It is now going on eight weeks since this decision was made and we are still waiting on County to fulfil their obligations. I understand from both < > at Transporting Somerset and from < > SEN Caseworker, that tenders have been received but they are 'unsuitable'. The latest reason cited is that they can't find a vehicle with a tail-lift.

I appreciate that there are budgetary concerns and I appreciate that eight weeks is not very long in County Council terms. However, in terms of my terminally ill five year old, this is, actually, quite a long time. And it is an additional stress that my family can do without. We are attempting to do our best by N - in fact, my husband is currently taking her swimming at < >'s pool in the absence of LEA-provided transport, in order to keep her as mobile as possible for as long as possible. He will also be taking her to riding for the disabled on Thursday, for the same reason. These therapies, to work on her balance and her muscle tone, are vital to keep her quality of life as high as possible for as long as possible. These are appropriate physical therapies, not merely bones to throw to a disabled child who will lack the life experiences of her peers.

I understand that to the County Council, N is just a minus-figure on a balance sheet. However, to us, and to the people who know her, she is a bright, funny, happy little girl who deserves as much support as she can get, for however long she is with us. We are doing our best to meet our obligations, practically and morally, to our daughter. We would like the County to do the same.

I would appreciate your help in swiftly finding a solution to these issues.

Yours sincerely 

I sent it to the following people:
  • The Learning and Achievement Operations Director
  • The SEN Casework Manager
  • Our SEN Caseworker
and I copied it to our other key professionals and our (most excellent) local councillor.

I am absolutely tanting at this point. I don't think I am being unreasonable in expecting some kind of response, even a holding response.

Because I spoke to our helper from the Somerset Parent Partnership after sending her a copy on Tuesday, I know that N was actually on the agenda to be discussed at the SEN Panel on that day.

However, we haven't even heard about that.