Daughter got her statement

[Karen_L]

Hi, well you will remember that I was trying to get extra help for Vikki at school as we were told once Vikki is sixteen there was no help available for her to continue on at sixthform.

Well the LEA agreed to everything we requested but said we didn't need a statement, As you know once your child is sixteen they have no legal rights as far as education is concerned as it is not compulsary education. We took the advice of Ipsea and had a rep from SNAP with us at a mediation meeting, the meeting went around in circles for 11/2 with us not backing down and letting the LEA know that we were prepared to go to court over this from the statement finally we got a letter from the Lea a couple of days later to say that they would do a statement. The statement is more a legal document to protect Vikki if she isn't getting the help she needs to attend school.

This news has been a great weight off our shoulders, your child has Lupus and they have rights, it is such a shame that we have to fight all the time. I do know that the co-ordinator and others from the LEA had had to look up Lupus so in one sense we have managed to spread the word a little further.

I do hope this post will help you to help your child have the best education programme for them and understanding from their school and LEA.

Good Luck

Love Karen xx

[Clare.T]

That's brilliant Karen - many congratulations ! :)
Thanks for letting us know too - I am sure others will be encouraged and informed by your experience.

What are the initials please ?

All the best to yourself in your current struggles

Very good luck for a speedy recovery :luck: :luck: :luck:

Clare

[Karen_L]

Sorry Clare,

LEA - lOCAL EDUCATION AUTHORITY

IPSEA - IDEPENDANT PANEL FOR SPECIAL EDUCATIONAL ADVICE (CHARITY)

SNAP - NOT SURE WHAT IT STANDS FOR BUT IT A RECOGNISED CHARITY FOR CHILDREN WITH SPECIAL NEEDS

Ipsea and Snap are very useful for fighting for your childs rights in education, they fight for kids who not only have learning difficulties but for kids like ours with Lupus who find it difficult to keep up with the school sylabul because of ill health, there are all sorts of ways they can help our kids, Please don't leave it too long before you seek help for your child if they need it, I should have applied for this when Vikki was first dx Feb 03 but I didn't know about it and no body tells you anything.

I know you may not think this is related to Lupus but parents of kids with Lupus need to know what is available to them to help their kids have a decent education most of our kids are too sick to go to school full-time, you can apply for them to have home tuition and possibly go to school part-time when able like Vikki has done for the past 18 months And don't forget you have the DDA on your side.

I do hope it will help other parents out there that are not only concerned about their childrens health but also about the amount of education and social activities (which is also very important) they are loosing.

good Luck

Love Karen xx

[Fishaholic]

Hi Karen

I'm surprised you've had trouble with the LEA. I've finished university and there is something called the DSA (Disabled Student Allowance) which is funded through your LEA. So it seems rather weird that they will provide support once you get to university, but not in the years between GCSE and A-level! I had no idea that was the case.

Incidentally, if your daughter does later go on to university, the DSA is very good and extremely helpful. It can be used to cover all sorts of costs for help you might need. I know that this is far too early, but be aware that should your daughter need it, it is best to apply long before starting the course as it can take a long time to have your needs assessed, the help agreed to and the equipment bought or helpers employed.

You usually need an independent assessment, usually by CELT (can't remember exactly, but something about Learning Technologies) who make recommendations. It is very rare for the LEA to turn that down. I was very nervous about my own assessment, but it was great. For once they were on "my side" and got me help and equipment I hadn't even considered asking for but was really useful. I just wonder if there is anything similar for people like your daughter who are still at school.

Anyway, I wish you and your daughter the best of luck.

Hugs, Sarah.