WE WON WE WON WE WON WE WON!

[daisy5678]

I still want it in writing but the Head of SEN met with me today and confirmed that they will offer 32.5 hours of support (the whole school day) plus half-termly autism outreach from the specialist autism school and weekly support from a specialist teacher!

I was over the moon with that, but even more so when he offered me a place on the LEA SEN decisions/ strategy group.

I'd been feeling kind of selfish for accepting not going to Tribunal, because a new law was passed in November (I think I saw it on the IPSEA website) where Tribunal decisions don't just count for that particular child, but also any other similar cases where the LEA have made the same wrong decision. So one good decision for my son could have helped other parents/ children, and I bet that's partly why my LEA were crapping it!

So I said yes to being on this group because that way I can hopefully help them to make decisions which are actually fair and helpful to people in the same decision that I've been in. He said, "we want to learn lessons from what's happened in your case" and I do actually believe they might want to not get so much grief from parents like me!

He said "oooh, but the ADOS score made us realise why he needs full time support because he's obviously got really severe autism" and I said "yes, but it's not about a label or a diagnosis as some children wait ages to be diagnosed; it should be about needs and my son has had the same needs and behaviours for his whole life - a label only explains them - and it shouldn't have taken 3 years and a mountain of paperwork for the LEA to recognise his needs, just like it shouldn't have taken an MP letter and Tribunal application to get the Statement in the first place and now again to get the 23 hours raised."

He didn't argue!

And what I didn't challenge was the severe autism bit, because I'd got quite het up at his review the other day because I didn't like this idea that he has severe autism just based on the ADOS, as he's so verbal, so, well, high-functioning, which is why it's been so well masked (also by the ADHD) for all these years that he's actually autistic. I asked the CAMHS psychiatrist at the review what his 'label' was, and she said it's not an exact science - he has autism or Autistic Spectrum Disorder - but wouldn't be tied down to severe or not, just saying the score indicated severe difficulties, but his high intelligence and excellent language compensate for these to some degree.

Later she took me aside and said I shouldn't try to discount the LEA's view that the ADOS = severe autism as it will make them feel better about allocating so many resources!

So I shut up then.

So for once, happy me! I just need to sort out the DLA appeal now and then I will feel .

But even if I don't get the DLA sorted and I don't get the extra money, I've won the Social Services battle and now the most important one: the support for J, and that extra support for him is what's really important.

Thanks to those of you who've offered advice and support through all of this, espcially about writing to the MP because that seems to have really helped!

Looking forward to not having to go to Tribunal - I really might have gone under if I'd have had to do that.

[MarsLady]

Congratulations

[bullet123]

That is marvellous news :D

[Saturn74]

Fantastic!
Well done.

[aefondkiss]

great news givemesleep

[daisy5678]

Thank you guys! Can't stop smiling!

[moondog]

Fantastic Givememsleep. And in a situation to shape future policy!!!!!

[Peachy]

Great news, great to see someone getting waht they need - you have done well for your LO.

[moondog]

And fantastic that 'they' want to learn from this experience too.

[daisy5678]

Yes - that's the best bit it's all best! But it's really good that I can do something in a wider sense, having got my more personal issues sorted. I will feel I'm doing my bit then, without having to be a militant outsider as I can be militant from the inside!

[daisy5678]

Tried to strike out the words 'that's the best bit', but it didn't work!

[Candlewax]

Excellent news Givemesleep.

[moondog]

Indeed Givemesleep.
I am an insider (SALT working with people with Autism) and althoguh i hate a lot of what goes on, I am of more use in my position than out of it.

[MAMAZON]

that is fantastic news.

well done.

[catok]

Great news! Can I say thank you for all your fighting? You'll be making a big difference to us out here!

[daisy5678]

I hope that I CAN make a difference. I've always been half tempted to go to the papers with the ridiculous story of what the last three years has been like in terms of trying to get J what he needs, but I wouldn't want his friends' parents to see it and be freaked out...I don't think they realise the reality of what their children have to put up with by having J as a classmate...certainly the tales of thrown chairs and attacking teachers would freak me out as a parent, so haven't gone there!

But working within the system, yeah, I think that would be more quietly effective. I hope. IF they'll listen to me. But being a teacher too, I hope that they can't claim I'm only seeing my own experience, because I can back up all the problems that I've had with ten experiences of my pupils' parents.

[sphil]

Very pleased to read this as we're about to embark on the same fight. Have just heard that the award of 'full time funding at ASD2 level' actually translates into 20 hours a week 1:1 for DS2 . This is OK atm as he's only doing mornings but will need to be increased if/when he goes full time. So your news is very reassuring. It's so ridiculous - at his Annual Review everyone agreed that DS2 needs constant support through the school day, including breaks and lunch times and then they award him 20 hours! And this is a severely autistic child who is only just becoming verbal. He's no trouble behaviour-wise, and I'm willing to bet that's where the 20 hours comes from . The school are totally on our side, luckily.

[daisy5678]

It's ridiculous, Sphil, and this is where the threat of Tribunal makes them actually look at the individual child, as saying 'ASD2 level' is just them trying to fit your child into a band or a category, and not considering his individual needs, which is not what the law or the Code of Practice intends. They can use their own random criteria as a jumping off point, but they must look at what your child actually needs.

Do check though that the 20 hours thing is a total. Here, you get an LSA allocation (so J's was 17.5 hours) and then midday support is a separate issue, so J got 17.5 PLUS 5 midday hours, which brought him to 22.5. Plus the school was supposed to contribute 2.5 hours, so that brought J's hours to 25. If the same applies for your DS, that might be 20 plus 5 plus whatever the school is expected to contribute. Which might actually take you to 30 hours, if that makes sense.

[sphil]

Thanks Givemesleep - I hadn't realised that could be the case. We have a meeting next week so will check then. Do you think break time support might be separate too?

[daisy5678]

Not usually. But I think this is where your consultant/ paed could step in and write a recommendation which might help. Our psych has been brilliant at all the meetings and stuff - she's really helped.

You're probably right about the non-problematic behaviour making them reluctant to up the hours, but that's unacceptable. Try suggesting the most expensive local private special school - see how good full time support looks to them then!

[KarenThirl]

Cripes, that's fantastic! Brilliant statement result.

Well done on gettnig a place on the strategy group, you've worked long and hard for your ds and you deserve the recognition.

[ShinyHappyPeopleHoldingHands]

Great news.. v. inspiring x

[sphil]

Seeing the paed on Tuesday as it happens - will raise this then. Thanks again Givemesleep.

[Peachy]

Sphil are they doing what our LEA did to ds3- we know they're similar? where they will only issue a stateent to cover currents chool attendance- anything more needs to go back to panel. DS3 isn't currently using his 16 hours a week allocation but was supposed to go F/T after Easter, schoola re saying no way and I have said that as far as I am concerned there is no way i will ever trust that place agan, after the crud they've given us. (LEA taking us to looka round alternatives after half term so surely they are taking us seriously now? Mind you one of those schools is decidedly NOT going to be OK as fara s DH and I are concerned... why tehy think we'll go for a MS place in a hellhole school I have no idea....)