Should I be applying for a statement even though DS never wants to go back to school?

[magicmutt]

I'm sorry this is long. I've tried to make it as brief as possible. I know there are lots of you on this board that are very knowledgeable about this issue and I really need some advice.

DS (12) has been off secondary school for six months now. He also missed Year 6 of primary. He is diagnosed with TS, OCD and social anxiety. He's been asssessed three times for AS and his psychiatrist has added 'autistic traits' to her description of him without giving him a full diagnosis. At our last meeting, she agreed that he showed Asperger traits, but said she didn't think there was any point pursuing a diagnosis because it wouldn't get him any more help than he's getting now . I will probably pursue the diagnosis, but I was a bit overwhelmed by the psychiatrist's logic at the meeting.

At secondary school, in spite of being in a small class for SNs and having a named person who DS could sit with whenever he felt anxious (which was most of the time), DS was constantly anxious. Once he had reached the end of his tether and couldn't go in anymore, he became reclusive and couldn't go out of the house for months afterwards. I felt like I was under house arrest, having to stay in with him all the time. (He is getting better and becoming more confident at going out now). We effectively home educated until the LEA arranged support for him at home. He is now getting online tutoring, but I'm not sure whether we are going to stick with that, or deregister and go it alone. The LEA's agenda is to get him into a PRU, then get him back into mainstream. We are accepting the free tutoring, but we have no intention, at the moment, of allowing him to go to a PRU or back into a mainstream school, where he will simply go through the same hell all over again.

That's the background. My question is: is there any point applying for a statement now? I know we are well within our rights to apply, considering DS's needs, but DS is adamant that he never wants to go back to school and we have promised him that we will respect that. We are terrified of him ever getting so ill again and if that means he never goes to secondary, so be it. We know there are other ways of getting an education. But would it be important for help for him in the future if his records show that his needs were serious enough to merit a statement?

I can't see what any statement would provide DS at this stage that would make school bearable for him. I have looked into small schools, special schools and mainstream schools with units attached, but DS would struggle in all of them. He needs one-to-one tutoring with a very patient and understanding tutor. A statement would simply name a school for him, wouldn't it? And school is exactly what he can't cope with.

A statement can name education otherwise than in school and can include home programmes. (This is how home based ABA programmes for pre schoolers are ordered by tribunals which is what we have).

so a statement Part 4 could say 'Education Otherwise Than at School under s319 of the Education Act 1996; namely (internet school / home tuition etc)'

there are also sections in Education Act 1996 about parental preference / education out of school (think its section 9 and 19)

Look at SEN Code of Practice as well.

You might want to read a blog (I think he has written a book now) by Joshua Muggleton who is now a young adult with AS and did internet schooling then went onto university. Or your DS may want to contact him. He does the conference circuit now talking about similar experiences

Hi magicmutt I would definitely apply for a statement. The fact your DS is unable to access school means he should have an assessment.

Am in very similar situation and we have just been told DS is getting a statement, still lots to sort out but it means we can access more support for him.

Agnes, that info on Josh Muggleton is very interesting, have bookmarked his page to read later.

Thanks very much for that information, Agnes. I suppose I'm worried that if the statement names a specific school for DS, the authorities will insist that he goes there and he is so terrified of going back to school.

The Josh Muggleton link is really interesting, thanks. I have had a good read of his blog and have now ordered his book. I am particularly interested in his experience of school.

starfish - congratulations on getting a statement! In what way is your situation similar? Do you know what school you want your child to go to?

Hi magic if it helps our LA SS is named on my DS statement, however he is home tutored by the LA.

However after reading Agnes post I am about to request part 4 to be changed to education otherwise.

HTH x

I would agree that going forward to gain the statement is important. It isn't about what school or where so that isn't an issue

It is a statement of the condition(s), how that presents and how that hinders ability, exactly what area's are problematic and what needs must be met for the person to be able to access an education, etc.

It's important whether he goes to any school or not because this is what you are going to use for any forward applications for tutoring fundings, respite/support possibles, cbt? specialist, anything...your statement will access other things and gives you a full evidential report to take forward with anything you might want to access for your DS and any entitlements as a result.

I'd say it might also keep the education authority from putting pressure on about the whole 'must have education by law' thing...esp as your DS is still only 12 and you probably also need a professional opinion about PRU not being an option at this time either and the reason's for that but I'd also be wanting that kept as an open-ended option for further down the line perhaps.

Hi magic, my DS is13 and has been out of school since Christmas with high anxiety. Has un diagnosed aspergers - because he won't do final part of Assessement - but all professionals agree that this is his diagnosis, if you know what I mean!

He has become very reclusive and barely leaves the house. Applied for stat Assessement in jan and home Tutition started middle of may. We are now getting a support tutor who is helping him with his anxiety and has formed a good rapport with him.

The LEA want to send him to a PRU and in our case, have visited and it is very small and has good staff and very similar children there to DS BUT it is only going to be a stepping stone and I have made this clear to the LEA. Just got to get the statement right now!

I have learned so much from this board, the advice is amazing and I really believe that pushing for the statement will give DS access to more services as he gets older.

Hope it helps to know you aren't on your own :)

Magic if they name a school he will not have to go, you can still home ed (but at your expense) - you will then just be back at square one home ed'ing with no statement. So its worth a go to get the financial support that comes with it. Also if you do get what you want (and financially what you are asking for may well be cheaper than any school placement) then if govt plans go through you will have an Education, Health and Social Care plan from 2014 which will last up to 25. The fact they are going to extend to 25 means I think statements (Plans) are going to get much harder to get from 2014 onwards (and they are hard enough now!). The only way LAs can fund 19-25 is to chop those who get a Statement / Plan in the first place. So I think now is probably your best chance. It may be possible post 2014 to get a personal budget for education / health / social care which means you will have more choice how the money is spent (allegedly)

Agnes - the only thing DS can cope with at the moment is private tutors or online teaching and I didn't think a statement would recommend that. However, you say that it would and that it would help with further support, in which case it's definitely worth going for it. To clarify: you are saying that even if we decided not to send him to any school that the statement names, the statement will still provide useful evidence to help with any other support required, is that right? It's scary that statements are going to be even harder to get. Thought they were already like gold dust.

starfish - yes, it helps very much to know I'm not on my own . In fact, your son's situation sounds uncannily similar to my son's. Like your son, mine has also just started his LEA home tuition (mainly online), but, unlike your son, I can tell already that he is not going to 'bond' with the once-a-week teacher who has been assigned to him. Her agenda is to win his trust and then help him to visit the PRU, but I know he will refuse to go. What are you hoping for with your DS? What do you think would enable him to cope with school? If you don't mind, I may need your help on the path to getting a statement, as you have just been through it yourself. I did attend a SOSSEN workshop a few months ago and still have the notes from that, but, to be honest, it rather put me off the idea because it made it sound virtually impossible to win a case.

sooz - thank you so much for clarifying the importance of having a statement. This is what I have never understood before - that a statement can help with more than just school and is important for my son's future. It would also be very good if it stopped the LEA from putting pressure on us to send DS to the PRU at this stage, which I know he couldn't cope with. We were planning to deregister him if the pressure became too much, but I know that we then lose any chance of financial help.

devient - your post gives me hope as this is exactly what DS needs at this stage in his life .

I am thinking of writing to the psychiatrist to explain that, on reflection, I believe DS should go on a waiting list for an assessment for AS. I have been advised that - rather like the statement - this will help with much more than school and is important information for DS to have himself in understanding why he feels different and can't cope with situations other people find relatively easy. However, I wonder how this will affect the statement. The waiting list is a year long, apparently. DS does have 'autistic traits' on his diagnosis - will this be enough to get him the help he needs, though? He needs to be treated like a boy with Aspergers, whether he is officially diagnosed or not.

What I refuse to accept is to put DS onto a merry-go-round of LEA home tuition, PRU, reintegration into mainstream school (without statement, which everyone says we don't need , and so no extra help), another breakdown, DS's inability to attend school, back to LEA home tuition and so on until he is 16 and the LEA can wash their hands of him.

Am happy to help magic, am by no means an expert, though it is amazing what I have learned from being on this forum from the experienced SN mums.

At the moment I am working towards DS being able to access the PRU with his tutor, it will be in a separate room, away from their pupils and just be for the hour, we are going to try it next Tuesday. I am looking at it as another small step to get DS out of the house. To be honest am really not sure what comes after this, I am going to look at the ASD units but I am wondering where DS will be able to,cope.

I do know hat PRU's are not usually suitable AT ALL for ASD and I have my guard up and although it seems a good steppingstone, I won't know until DS has been going there for lessons if it is going to be ok for a short time.

I am going to be getting the proposed statement in next couple of weeks then I will be asking more questions on here on getting it right!

Sorry for rambling, am learning all the time. I do know that the statement is going to,help DS but am unsure as to where educationally he will end up.

I mean where DS will go,to school eventually, but with the statement at least I hopefully have more options.

Thanks, starfish. I was told that DS's LEA teacher will build up very, very gradually to getting DS into the PRU, eg driving past it, going in to visit when no pupils are there, going in for a short time when people are there, etc. I am sceptical because we did all this when DS started at secondary school and it made no difference in the end because it wasn't anxiety about the unknown that troubled DS, it was the reality of school life. So I am not convinced that this would work on DS or that I will let them try it anyway. However, I do hope it works for your DS. It's good that you are visiting ASD units to see if anything feels right and I really hope you find something soon. What does your son want to happen? Would he prefer to stay at home from now on, or does he want to go back to school, albeit a more suitable school?

I can believe that PRUs are not suitable for ASD. They seem to be a mixed bag of DC with all sorts of different needs and it's probably pot luck whether the teachers have any knowledge about ASD.

Am now wondering whether we should pursue a private diagnosis for DS's 'Aspie' tendencies to speed things up. We were so shocked by the price quoted when we last explored this option (£1600) that we didn't proceed, but now we're wondering if we should just bite the bullet. It would be good to have a definitive answer at last.

Anyway, on the basis of the advice in this thread, I have realised that I do need to apply for a statement. I know it will be a long, hard road...

Thanks for your help and support, Starfish. I hope the statement is OK when it comes through although, from what I understand, you will probably have to do quite abit of tinkering with it. You have done so well to get this far.