Applying for a statement prior to starting school. Advice/Experience needed please.

[lulurose]

My dd2 has medical special needs, she has type one diabetes and is on an insulin pump 24 hours a day. This involves lots of care, set changes, blood glucose testing, carbohydrate counting and monitoring exercise and food intake. She is 2.

I gave up work to care for her and we are in reciept of Middle rate DLA and carers allowance.

Her consultant has suggested we start tthe ball rolling and apply for a statement for her. When I rang our LEA SN dept I was told that we wouldn't get assessed because there aren't any local diabetic children with statements. Do all enquiries get fobbed off initially? My dd will need some one to one help because she can't blood test herself, give herself insulin or treat herself when hypo. The insulin pump is new technology so perhaps LEAs aren't familiar with them. Should I now write? Get any outside agencies involved?

If anyone has any experience or advice to add please do.....it seems such an arbitary process.

TIA

I think the argument that might be used is that a Statement is for Special Educational Needs and your DD's needs aren't strictly educational. However, my DH's niece had complicated and severe health problems involving daily injections etc and she did get Statemented (this was a good 15 years or so ago, though). Clearly your DD is going to need some sort of additional support at school, but it might not necessarily be in the form of a Learning Support Assistant.

The fact that no diabetic children in the LEA are statemented at the moment is completely irrelevant - the LEA have a duty to consider the merits of each application, and can't have some blanket policy. Write to the Head of SEN (council website will have details) making a formal request for statutory assessment and at least the ball will be rolling.

Hopefully someone with experience of children at school with diabetes will be along here with more advice.

Thanks Hassled,

I know it is not strictly an educational need, but if the disease isn't managed properly then blood glucose will go sky high and she will be aggressive, dizzy and therefore not be able to access the curriculum. The same is true of low blood sugars (hypos), she has no awareness and could be unconscious quite quickly. Poor control at school may well lead to severe diabetes complications later in life.

I will write again to the LEA, I just found the IPSEA website that has a couple of template letters in it.

Thanks for replying.
Ifanyone else has any experience of this I'd appreciate advice.

I was trying to remember IPSEA but my mind was blank. There's also something called Parent Partnership which is LEA funded - I found them to be really good but other people haven't found them useful at all. Add in that bit about needing to ensure she is able to access the curriculum - good luck.

I know a girl who is severely diabetic, but she just has full time access to one of the admin staff who is trained to deal with her needs and all staff had to be trained and know how to spot the signs to know to send for the admin staff. So I know that it can be managed without a Statement, but can see why you want one.

Get the consultant to write a letter, spelling out in great detail why adult support will be needed, how, how long for etc.

If the consultant requests and supports it, you have a greater chance of it happening.

Good luck.

Yes, I would start ASAP. It took me a year to get my son's Statement, and that was considered quite quick by some (even though legally it's only supposed to take 6 months )

I would agree with gms, get one of the professionals that deal with your dd involved. I think they do like to try to fob you off, especially as your dd is so young, but like my dd3 also 2, she will need support the day she starts nursery, waiting to see how she will get on isn't an option. The fact that no other diabetic child is statemented is a very poor excuse, every child is different. We have finally got an agreement for assessment and have already had an initial meeting with an ed psych but dd3s case probably won't go to panel until September and then after that the statement itself has to be worked out, so it's a long process.

We requested Statement for DS when he was just over 2. He doesn't have health/medical needs but ASD/SN. Just make sure you write a clear, short letter and send it RECORDED DELIVERY.

I will be watching this with interest as my DD has similar medical needs andc I've been wondering what happens when she starts school as, like you I get DLA and carers allowance now so that Ican be with her all the time. Please let us know how you get on and good luck.

Round here if it a health need it would be managed by care plan set up in conjunction with school with health advice - sometimes with a statement, sometimes without. Do you know which school dd2 is likely to go to? Or which nursery? I'm guessing that the nursery manager would be the first person to speak to, because they can start the ball rolling with LEA if necessary. The schools should be happy enough to tell you how they would manage those issues, then you can start process if necessary.

Thanks for all your advice and experiences. I've written a letter and will keep plugging away.

Yes,dd will go to the school her sister has a place at (one year older and starts this year). I have spoken to the head and she seemed quite laid back, they have an older girl with type One diabetes but because she is on a 2 injection a day regime, her needs don't impact on the school staff as much as my dds will. Because she is on a pump there will need to be much more adult involvement. It will be new to the school as insulin pumps are not the norm yet.

I think I will go it alone without the school at this stage and get her consultant to write a supporting letter. She won't be able to start school unless there is some support in place, I really don't want to go in and take over her care at school, I know some parents with children with this disease do have to.

Thanks again x