Monday, 2 June 2014

some are more equal than others

This is the email I sent to our SEN Caseworker, her boss, the Director of Learning and Achievement Operations and cc'd to our local councillor and MP on Friday afternoon, in reponse to the SEN's email I mentioned before the weekend.

B has just started phoning down a list of Taxi companies with wheelchair accessible vehicles in the local area. The first one he spoke to hadn't been contacted by the LEA and has gone away to see whether they can help.

Why are we having to do this ourselves?

Dear <SEN Caseworker> 
I do appreciate the difficulties that County has been experiencing putting transport in place for N. However, it is simply not acceptable to say that a child who needs a wheelchair as part of her day to day mobilisation is not able to have that wheelchair transported to school.

We have not simply 'ordered an electric wheelchair' for N as a nice, cheery, optional toy for her to take to school with her. She has been referred to the Exeter Mobility Service for an electric chair because as she grows, she is losing the ability to walk. My child is losing her ability to walk. To move around. To get in and out of chairs and cars and her bed and the bath. Already she cannot walk independently. And already walking with her Kaye Walker exhausts her. Being in a powered chair saves her energy that she can then use to do things like hold a pencil. Feed herself. Swallow. And ultimately, breathe. Her day to day kit is, this half term, also going to include a suction pump in case she cannot clear her own airways.
I know that mainstream schooling is the County's preferred method of education for children like N. It is certainly our preferred method - I cannot emphasise enough how much N's speech, language and general confidence has come on in the short time she has been at <school>. Mainstream is the right place for her, because she is an intelligent and sociable child with no behavioural difficulties, despite her day to day challenges. 
Her powered chair is going to arrive in twelve to eighteen weeks time and by then, I expect County to be able to meet their legal obligation to take her to school, with the appropriate equipment to enable her to get the most out of her day.

Until then, we will go with option one on your list - N to travel to and from school in a LEA provided car-seat, without an escort. The driver will have to be prepared to lift her in and out of the car seat because she is not always able to do this herself if she is tired; her current weight is just under 13kg. The driver will also have to transport both her small electric wheelchair and her manual wheelchair in to school on a Monday, bring them back on Tuesday afternoon and then take them in again on a Thursday morning and bring them back on a Friday afternoon. Her Kaye Walker also needs to go with her, as does the suction pump. We will do this because it is important for her to have the sense of independence that transport to school will give her; as well as being one stress that we as a family do not need to deal with.
I am extremely angry that I having to put so much of my time and my energy in to chasing SCC to meet their obligation to my daughter when I should be spending that time actually being a mum.

I look forward to hearing your thoughts regarding the SEN team declining to transport a disabled child's main form of mobilisation to school.

They are backing us in to a corner about this and I am running out of options. The Somerset Parent Partnership have suggested that we try to find someone to Advocate for us and are putting some feelers out on our behalf.  It was they who suggested phoning round a list of accessible taxi companies and seeing what we came up with. The lady I spoke to, who I had cc'd a copy of the email, told me that she had showed it to her managers and colleagues and the consensus is that the County Council are in danger of breaching the Equality Act by not providing N with appropriate transport.

I am so angry and I am so exhausted with fighting for all of this.

2 comments:

  1. IPSEA might be some help? http://www.ipsea.org.uk/

    ReplyDelete