Not sure what to do next

[Edenviolet]

I have posted before about dd2 (4) and the problems we have been having regarding her school place for September.

Dd has ehlers danlos syndrome and type 1 diabetes. She suffers from severe fatigue, pain, subluxations, dislocations, falls and diabetes related has no hypo awareness, is on 5-7 injections a day but moving to a pump in couple of weeks and needs a lot of supervision and care.

We desperately want a 1:1 for her but were refused a statement, we appealed and the LA refused again to assess her they said she categorically cannot get a statement as has no learning difficulties.

Dds consultant has written saying that due to her health issues she needs constant supervision in class and at playtime, help with changing and toilet and will not be safe otherwise.
Without a statement the school will not give 1:1 and want to adopt a wait and see approach which I feel will be dangerous. I want everything in place for day 1 but how can dd get the 1:1 support she needs? The consultant has even said how low/high blood sugars will impact her learning but they will not budge.

Today for example dd has a terrible hypo with no symptoms whatsoever (bg was 2.3 she just suddenly collapsed no warning) then after treatment suddenly went too high afterr an hour or so (22.6) and was sleepy, irritable etc so if had been at school could not have learnt anything. Luckily dd has a cgms alarm that alerts very loudly to low blood sugar as dd has no awareness at all but there needs to be somebody trained with her to that immediately or the alarm is useless if nobody responds to it.

Can I appeal again for a statement or is there any way of getting the school to provide 1:1 care, the consultant set out very clearly in about 15 points exactly why she needs 1:1 but will that be enough?

Thanks

Have you looked into applying for continuing care?
I don't know the ins and outs of it all but i no its funded by the NHS rather than the LA and is for children with high level complex medical needs. I know some people who use it for children with feeding tubes, cpap and trachys and they get a carer on a 1:1 for the child. I don't know if they use it in school but it might be worth a look.
Have you spoken to anyone at IPSEA or a diabetes charity for advice on how to get help in school?

appeal the LAs decision to SENDIST.
you will probably find that with the evidence you have the LA will back down straight away.

I have got advice from a fb page regarding rights at school for t1 diabetics.

I had not heard about the medical funding I will look into that. I got my template letters from ipsea website so will look on there again.
The LA are so unhelpful and the school seem either reluctant or unaware how serious the problems are, I'm leaning toward reluctant to help as I have sent them lots of info about dd and tried repeatedly to arrange a meeting to discuss her needs before the end of term.
Im going to take the consultants letter in on Monday morning and see what response I get.

Did you appeal to SENDIST when the LA turned down your application for a statement?
The only issue with SENDIST is that you have a period of only 2 months to appeal once you have received the letter from the LA so you may have to move quickly.

The school are probably reluctant because of funding. The won't want to pay for a full time 1:1 without a statement. Hopefully on Monday they might realise how serious it is and support you to get a statement.

No I just tried to apply again but they had what they said was a panel meeting and said I could not appeal and dd would not get a statement as she only has medical problems and no learning difficulties so school action plus would cover her needs.

The consultants letter did state that dd should have a statement and that he fully supports us in trying to get one.

They can't stop you appealing to SENDIST. They should have sent to a proper letter stating that they are refusing to assess and this letter gives you your rights to appeal within 2 months.
They are trying to put you off. The LA has no jurisdiction over SENDIST.
I don't know anything about statements specifically for medical needs so i can't say whether you will get one but i have been through a SENDIST appeal. The LA tried to say that i had no right to appeal, SENDIST sent them a strongly worded letter advising them that i did.

I think there are some rules about having to wait a set period of time before applying for a statement again if you get turned down and don't appeal but i don't know what the time period is.

Found this linky that might give u some helpful info on diabetes and statements
www.childrenwithdiabetesuk.org/wp-content/uploads/2009/12/AccessingSupportForChildrenWithDiabetesInSchool-UK.pdf