15 hours awarded on statement so am YET AGAIN forced to disagree and possibly appeal!

[bonkerz]

Am really fed up. Am sat here having to write a strongly worded letter AGAIn to the LEA about the fact that my son has only been awarded 15 hours on his statement. The head in her evidence states he is already recieving over 25 hours of 1:1 support and that this is not meeting DSs needs and is only just containing the issues and that he is at risk of permanent exclusion due to his problems and is currently attending a PRU unit to enable school some time out.
Am having trouble getting case worker to ring me and arrange a meeting and im fuming TByh and totally fed up. Just had meet with parent partnership rock! So do have 2 A4 sheets of pointers to put in this letter but im so angry and upset right now i cant focus!

What are the chances of LEA upping hours from 15 to 35 based on the fact that ME and SCHOOL say he cant function or access curriculaum without it????????

I think threatening the press is the nuclear option, if you know what I mean, so keep it for the absolute final push. If they totally disregard you,however, you could mention that your pal in PR (me) has a couple of journalist friends at the Daily Mail who are gagging to write a "Labour government's SEN policy in disarray, councils cheating parents of needy kids" type story, which of course plays into the Mail's Tory agenda anyway. Tell them that you would have to give names and all details, but try and say it more in sorrow than in anger, iykwim. It is true actually; the press do like this kind of story and we could easily get it in the paper. You could say that you have nothing left to lose, and want to tell the world what's happening to needy children, and the danger they and their classmates are being put in through inadequate one-to-one hours in (insert name of your home town). You could mention that it's also a major health and safety issue and you believe the council is failing in its duty of care if it lets your son be unaccompanied for such a large percentage of time (good legal jargon!).Tell them they need to put that point to the Head of SEN, their boss, and you will hold off till you hear back from them definitively. I would keep it as the sanction of last resort if you can though, as it can only be used once! Plus most of us mumsnetters are practically lawyers ourselves by now, so by chatting on mumsnet you pretty much have taken informal legal advice!! Go for it, and don't worry if you get emotional, you are allowed to and it's much more uncomfortable for them if you cry than if you shout!! Go in wearing your armour, and think of it as fighting for your child who can't fight for himself. I also sometimes use Bachs Rescue Remedy to give me a bit of courage.

I think threatening the press is the nuclear option, if you know what I mean, so keep it for the absolute final push. If they totally disregard you,however, you could mention that your pal in PR (me) has a couple of journalist friends at the Daily Mail who are gagging to write a "Labour government's SEN policy in disarray, councils cheating parents of needy kids" type story, which of course plays into the Mail's Tory agenda anyway. Tell them that you would have to give names and all details, but try and say it more in sorrow than in anger, iykwim. It is true actually; the press do like this kind of story and we could easily get it in the paper. You could say that you have nothing left to lose, and want to tell the world what's happening to needy children, and the danger they and their classmates are being put in through inadequate one-to-one hours in (insert name of your home town). You could mention that it's also a major health and safety issue and you believe the council is failing in its duty of care if it lets your son be unaccompanied for such a large percentage of time (good legal jargon!).Tell them they need to put that point to the Head of SEN, their boss, and you will hold off till you hear back from them definitively. I would keep it as the sanction of last resort if you can though, as it can only be used once! Plus most of us mumsnetters are practically lawyers ourselves by now, so by chatting on mumsnet you pretty much have taken informal legal advice!! Go for it, and don't worry if you get emotional, you are allowed to and it's much more uncomfortable for them if you cry than if you shout!! Go in wearing your armour, and think of it as fighting for your child who can't fight for himself. I also sometimes use Bachs Rescue Remedy to give me a bit of courage.

sorry, pressed button three times by mistake in my outrage on your behalf!

thanks guys, been a bit naughty and have devised a list of things that need to be said and have printed it out. DH came home and said it looked like id been to a lawyer!! mumsnet is great!!!!

had meeting and it looks like we WILL get 32 hours of support. Case worker totally on our side. Head mistress said she has had a few members of staff voice there apprehension at DS starting back in the MS school and apparently the governers are not happy about it either!! Case worker said she will insist on a review 6 months after DS starts back at MS which may not be till after easter as looks like we will try and keep him at PRU till statement is finalised and support network in place. School have also requested that emotional councilling and support contact is written into the statement to try and get DS expressing how he is feeling in words rather than physical aggression.
Used the line about health and safety and how would LEA answer parent whos child had been hurt by DS! THAT was funny to watch case worker squirm!!!
Also informed case worker that if full time support STILL does not work in MS that i will be fighting for the priory setting. She was quick to inform me that she will PERSONNALLY help me find somewhere suitable for DS if statement fails!! We will see i suppose.
Am off to bed now cos DH gone out with kids till 4 ish so am gonna try get rid of this stress head ache!

That all sounds very positive - well done!

fantastic!!!!!

Well done! It sounds as if things are moving forward at last for you and your son. Perhaps as well with your son having a positive experience of school now at the PRU he might have learnt some coping strategies for when he goes back.

Virtual champagne opened

Well done Bonkerz - fingers crossed for you all!

Well done Bonkerz!

far better to get it sorted out now than settle him in then find out school might not take him after all as with ds3 9though Paed taking on our case so we will get answers LOL).

Brilliant bonkerz, well done

thanks guys. DS kicked off big time yesterday and PRU teacher rang me to tell me she retracted statement she had made and felt DS had a big maturity and emotional problem. She said alot of his anger is born from frustration (apparently he kicked off cos he couldnt grasp time telling! This she found strange considering he loves maths and is G&T). When she described his meltdown and said it lasted ages i asked how long before he calmed down and she said 20 minutes! This is fast compared to school so i took great delight in telling her she obviously had not seen a BIG meltdown which can take upto an hour and a half to calm down from! Think this scared her cos she started talking about reintergration!!!!

Well maybe that silly lady at the PRU will stop making snap judgements based on a couple of hours with a child. It drives me mad the way so-called experts diagnose what our kids need after a few hours with them and a module in special needs 20 years ago at uni! Good news!

Lets just hope that CAHMS see what everyone else sees and finally gives DS a label! Will be devastated if they say he is 'normal......that sounds strange but YKWIM. DO YOU?????? God that does sound terrible. What i mean is after everything that has happened it would be the final straw if CAHMS dont think he has a problem and it would mean i am a terrible mum who has created a naughty boy. OK am gonna shut up now cos i know oyu all know what i mean!

Am getting nervous about the assessment day on friday. HAs anyone had a day at CAMHS with their child just before diagnosis? Dont know what to expect!

I really think it will be an ADOS but am surprised they haven't explained to you exactly what it's all about!

Why not ring tomorrow and leave a message for the person who is in charge of ds's case? Just ask what is going to happen and say you want to hear it on the phone rather than in front of ds on Friday.

I know EXACTLY what you mean about dx. But you aren't a terrible mum! A dx is a signpost to what ds needs next so you are a good mum to want one. Let us know!

thanks givemesleep. DS had another bad day again and is working out his anger on the kareoke machine right now!!!! SO FUNNY!!!!

Just realised i did have to sign a form to say they could video DS so i think he has had the ADOS test! Will nkow tomorrow i suppose

Well it doesnt look like he ahs had the ADOS test tBH. Day spent at CAMHS today involved filling in a 'my family' form and making a fmaily shield followed by playtime and luch big brother style (cameras everywhere and professionals with clip boards!)
Meeting with psych after lunch to discuss DS. Meeting ended with psych saying they will have a meeting next week and discuss DS and see if he meets criteria for diagnosis BUT that they will only diagnose if they feel it is best for DS.
I immediately pointed out that without a diangnosis DS cannot access support and help and that i hoped they would take that inot consideration!

Yet again it is now a waiting game!

If he meets criteria, they should diagnose, but I guess what they were saying is that it is pointless diagnosing if he does not meet criteria. Because then he'd have an inaccurate label so it would not be best for DS, if that makes sense.

In a week, it will all be more concrete!

well if DS doesnt meet the criteria for a diagnosis i dont know what we will do TBH!!!
Am now gonna spend all the time till report arrives panicking and worrying!

Surely they need to see him in situ, ie, where he finds life most stressful which is at school. I can't believe the problems you are having. If a child is at a PRU, needs tons of 1 to 1 support to cope with mainstream then there is clearly something wrong (sorry that sounds really bald but YKWIM). It's either caused by stuff happening to them (we have a chap who certainly wasn't born with SEN but has, through his crap life, acquired them) or clinical. Clearly the first is not the case with your son so it HAS to be the second. Crikey. How thick are they? Sorry I'm chuntering but I just feel so cross for you and cannot believe what you are being put through.
Has the chap at the Priory school near you observed him. It would be interesting to get his feedback.

Bonkerz, the dx shouldn't be the only pathway to more help. I say shouldn't because I know it isn't always like that, but J was Statemented even before he had any dx and got DLA even before he had any dx. The only thing that the ADHD and autism diagnoses did was give more of a description of his difficulties.

The only place that needed a label to give us some help were Social Services - but the ADHD dx, which you have, should be sufficient for them.

I know that a label can open up more things e.g. autism training for schools etc. but in terms of core resources, as flyingmum says, there are clear needs here and the Statement and the support shouldn't be dependent on an ASD dx so an inaccurate dx wouldn't really move anything forward, would it?...unless I've missed something? - which is very possible!

I even had a meeting with a mediation person recently where she repeatedly (and patronisingly) reminded me that the new dx probably wouldn't affect the LEA's decision as decisions were based on need not dx think I knew that already!

That IS the way I guess things have to be - especially when dxs are so hard for some to get because of waiting lists etc. So I guess what I am trying to say is, don't worry: he has very clear needs and support for those needs should not depend on an official ASD dx, so don't stress about dx!

Sorry, really tired so this probably doesn't make sense!

makes complete sense!
I know i shouldnt put so much enphasis on diagnosis BUT i feel the only way i will come to terms with DS problems would be with a formal title IYKWIM.
It is true that the facts clearly show a little boy who has complex severe needs and regardless of diagnosis these needs need to be met. In reality its hard to meet those needs without a diagnosis mainly due to the training a carer will need being specifically for ASD children and DS hasnt got a diganosis!!!
Found out today as well that the ONLY reason the LEA upped DS hours on his statement was purely because the MP had written to them!! Had a letter from said MP today stating that by the time i recieve the letter i should have the full time support as he had personnally seen to it and that if that wasnt the case i was to ring him immediately!!!!!

I didn't realise you had got the full time now! Well done - that's brilliant! I too had contact from MP's assistant today to discuss the 'issues'. She's (MP) gonna write to the Head of Children's Services, so your news makes me feel positive that that might actually help!

I take your point about training. I think that's the new layer for J - having staff trained beyond generic behaviour management techniques.

Yay for your MP - so is it 32 hours support or 34 you now have?

It is frustrating and it is mainly down to funding. Keep nagging the LEA, as I work in a school as a TA however it is hard to employ staff, espesh when it comes down to 1:1 support as so many children need support however the funding is not there. Good luck.