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Is ASD anxiety a medical or educational need?

20 replies

KOKOagainandagain · 05/05/2016 09:06

As part of the reply to JR pre-action letter for DS1 relating to transfer from statement to EHCP, the LA solicitors say that anxiety is a health issue not an education one and will be moved from part 3 to the health section of the ECPH.

DS1 is currently out of school but his statement says ASD specific counselling either from school based counsellor or CAMHS. Solicitors say he has to be in school to benefit from school counsellor and that LA can't refer to CAMHS, effect their criteria, waiting lists etc and so anxiety is nothing to do with them. They have said they will out of the goodness of their hearts assist parents following the NHS referral route, whatever that means - probably fill in a CAF!

Does this mean that, regardless of the JR forcing them to actually do the transfer, they can then issue a Plan that I can only appeal at SENDIST Tribunal?

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Ineedmorepatience · 05/05/2016 09:39

No it should be in part B, it is an educational need because it affects your chid's ability to learn!

LA are being stupid! Its like when they used to say SALT was a health need!

When you get it put into part B, make sure there is provision for it in part F.

Good luck Flowers

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Melawati · 05/05/2016 10:04

Yes, I would say educational. Currently waiting for a draft of DD's plan but has been clear from discussion with LA EP that they consider anxiety that prevents access to education as an educational need.

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KOKOagainandagain · 05/05/2016 10:47

They say that's why the LA will assist parents - they accept that anxiety is preventing DS1 from accessing education but still propose to put it in the health section Confused.

Do you think the solicitor handling JR will respond saying that the LA can't do this or is the content of the draft a separate issue that can't be dealt with at point of JR and may involve an appeal of the final draft when eventually received?

Is there precedent for anxiety like there is for SALT and OT? Does precedent set for Statement still apply to EHCP?

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Melawati · 05/05/2016 11:21

Sorry, I'm too much of a novice at this to help, but will be watching with interest.

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Ineedmorepatience · 05/05/2016 14:58

I think yes the precendents set for statements still apply for ehcp but dont know of a precedent for anxiety being in part B sorry.

I do know someone who might know though and will ask Smile

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Ineedmorepatience · 05/05/2016 22:49

Will come back tomorrow keep.

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claw12 · 05/05/2016 23:50

We had this argument years ago, CAMHS saying educational and LA saying health.

CAMHS were saying school related anxiety, school need to sort it.

You could argue that any reintegration plan to school should be underpinned by a therapeutic approach ie trained counsellor.

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KOKOagainandagain · 06/05/2016 09:02

The JR is essentially for not delivering statemented provision (SALT, OT, ASD specific counselling) whilst DS1 has been out of school for since January 2015. The LA are now arranging SALT and OT but are really pushing the anxiety as their excuse for not delivering provision. They argue that they only had responsibility whilst DS1 was in school but when that placement broke down (or as they phrase it, parents withdrew DS1 because of reported anxiety) it became an issue between us and the NHS and it was parental responsibility to get a referral to CAMHS via the GP.

As the JR is also about failure to complete transfer following a Transfer Meeting, and report whilst DS1 was still at school and a letter from the LA dated last June saying that they are in the process of drafting the Plan. The LA now want to move anxiety/counselling from parts 2 and 3 to the health section on transfer. They want parents to get a referral to CAMHS through the GP. I'm not sure that the GP could refer directly because following reorganisation CAMHS are now something else and I think we would first need a referral to comm paed. This would take a very long time even if if were the right thing to do.

I have explained over and over to the LA that the placement failed because the school were not delivering provision in the statement. The Transfer review report shows the academic impact of this in failure to make any progress. Non-delivery of provision meant that DS1was not able to cope with the additional pressures of transition from year 8 to year 9 and choosing GCSE options at the same time that a new head took over the school and introduced homework and made other changes to rules that DS1 experienced as punitive. The situation resulted in an exacerbation of DS1's 'usual' ASD related anxiety. With hindsight, I should have told the LA that the placement was at risk whilst DS1 was still their instead of focusing on communicating with the school and then trying to work with them to try and get DS1 to return.

I don't believe that DS1 has a separate mental health condition - the referral criteria for ASD provision locally. A separate diagnosis is supposed to be made at the time of ASD diagnosis - hence referral from the comm paed. If we bracket school completely, DS1 is the least anxious I have seen him for about 7 or 8 years judging by his resilience when things unexpectedly change (used to result in meltdown) and especially the number of tics he has. At the moment he is tic free for the first time in years and smiles and laughs on a daily basis. His demeanour has changed, he looks happy and relaxed instead of withdrawn and 'bad tempered', reacting to everything in his environment (including parents and DS2) with outright hostility.

I don't think that DS1 has a discrete condition or that CAMHS could provide ASD specific counselling which explained to DS1 why he reacts the way that he does and to teach him practical workarounds. At worst, CAMHS could make things a lot worse. The LA seem to want us to prove that DS1 is anxious (and therefore it is legitimate that he is not able to attend school) and that to do so we have to take him to the GP.

The LA are doing reassessment by their EP. She has sent her one page profile and her professional interests are listed as 'attachment, resilience, mental health and well-being'. Doesn't bode well. Not even the relationship between, or the impact of an ASD, then. What's the betting she attempts to 'diagnose' a separate mental health condition?

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Ineedmorepatience · 06/05/2016 09:46

Morning keep this is what my contact said, hope it is helpful.

Case law re anxiety no - but there is case law re therapies; a number even.

The general rule of thumb is any provision which educates or trains the brain is to be regarded as educational provision and therefore included in Part 3/Section F.

I suspect the LA wants to move it to G because they are then exonerated from any responsibility for it and its cheaper for them.

Edward Timpson wrote to all LAs basically saying no child will lose out as part of the transition to EHCPs. If counselling is in the statement then it must be in the EHCP UNLESS the LA has evidence (advice/reports) which recommends the child no longer needs it.

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KOKOagainandagain · 06/05/2016 11:08

Thanks for the info claw (long time no 'see' Smile) and ineed.

I had been swallowing the LA oft repeated line that the provision in Part 3 was no longer relevant because part 4 had changed. Of course that is not true. When we went to tribunal, counselling was agreed in Part 3 even though the LA wanted to name the local m/s in Part 4. Since Parts 2 and 3 were agreed before Part 4 was even considered, of course a change to Part 4 does not automatically mean there must be a change to Part 3 if DS1's needs have not changed.

I have had the LA in my house for months now - tutor, EOTAS lead tutor, SNO. They all keep banging on about how the Statement is no longer relevant because 'things have changed' so we should ignore what's in it and there is no point transferring the statement to an EHCP because DS1 will 'probably never attend school again'. They argue that because things have changed, the LA want new assessments to be carried out. They didn't arrange for new assessments though, allegedly because they thought that DS1 probably wouldn't engage with them. Instead I am encouraged to HE him and am pointed to websites for charity run youth groups for LAC and young offenders. DS1 is not suited to HE, he has never done any school work at home (had to do homework at school). DH works full time and I don't even like teaching undergraduates because they are not sufficiently passionate about minor details that just don't matter to most people the discipline [embarrassed]. I know my own weaknesses and I would be a nightmare - I check original sources of bibliographic references fgs. I know they can't force me to HE but they are trying their best to guilt-trip me/convince me it is an inevitability. I shouldn't have to abandon all hope of DS1 getting help and support to get rid of the stress that the LA bring to the situation. Sad

Threat of JR has meant that they are finally arranging SALT and OT but they have not come up with any home to school transition and will not arrange counselling. The solicitors even say that the EP reassessment for transfer will specifically consider 'strategies for DS1 to reengage with both home tuition and school'.

I will send my comments to the solicitor acting wrt JR and see what she advices we do next - progress to JR or accept that threat of JR has just forced them to act and stop delaying unreasonably. I don't even know that there would be a case for JR anymore so if the LA do issue the draft and it is crap I will have no option but to go to tribunal. How will that help get DS1 back into school? Plus DS1 will be 16 in 7 months. I can't foresee how this will complicate things, but I expect it will.

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Ineedmorepatience · 06/05/2016 11:42

I think there is a culture at the moment of pushing parents to the absolute limit until they say fuck you and walk away.

Thats where we got to and I have met many others in the same situation who are now home edding.

I admire your tenacity and courage to keep on keeping on and I really hope you get the right outcome for you and your Ds.

FlowersCakeBrewWineChocolate

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Melawati · 06/05/2016 12:55

I don't think that DS1 has a discrete condition or that CAMHS could provide ASD specific counselling which explained to DS1 why he reacts the way that he does and to teach him practical workarounds.

My DD does have a clinical dx of anxiety, and I know your DS doesn't, but the above is one of the things that she has got from Camhs and it has helped. I can see improvements in her ability to understand her behaviour and she's making progress towards workarounds/coping strategies. It's been very much in the context of understanding how her ASD affects her, and it has helped with her self esteem.
I know Camhs varies enormously between areas but it might be worth investigating this further.

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KOKOagainandagain · 06/05/2016 15:02

I have no idea tbh whether CAMHS would be any good in these parts. I have only just found out that they don't exist any more. The solicitors say the 'client group' of young people now have to be referred to the Integrated Delivery Team (IDT).

However, a quick google shows that there are several pathways including one for young people (NT and mild to moderate LD) and another neurodevelopmental pathway for severe, profound and multiple LD, ASD and ADHD. No mention has been made of the neurodevelopmental pathway.

The EOTAS lead tutor said that it doesn't matter that DS1 has ASD, this is not significant and we should bracket it. He gave some bollocks example of being afraid of spiders not being a specifically ASD issue and, in any case, he said 'we are all on the spectrum'. I refrained from poking him in the eye with a sharp stick, but only just.

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Melawati · 06/05/2016 16:46

Star there are no sharp sticks to hand, but you could poke him in the eye with this from me? The neurodevelopmental pathway is what you need. Try to see if there is anyone already involved in DS's care who could refer.
It's nonsense to say the ASD doesn't impact outside certain parameters. Really my DD's ASD underscores almost every aspect of her behaviour and understanding this informs her, us and professionals when coming up with strategies to help her manage.
Her anxiety and her ASD are two separate things, each could exist separately but together they are more than the sum of their parts, and it's this that needs the highly specialist input.

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GraciesMansion · 06/05/2016 16:57

There are a few children that I work with that have separate ASD and anxiety dx. In these cases CAMHS are responsible for providing the theraputic input needed and in some cases medication for the anxiety, and therefore it is listed as a health need in the EHCP.

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KOKOagainandagain · 06/05/2016 17:32

The thing is that I don't think that DS1 would meet the diagnostic criteria for anxiety as a separate diagnosis. Regardless of diagnostic criteria (and the delay and emotional impact of wasting your time with the referral process), I don't think that DS1 is 'anxious' per se.

I guess it is down to 'avoiding' and managing your environment and having sufficient sense of self and self-awareness to know what you like to and therefore, logically, not doing things that you believe are unpleasant and unnecessary. DS1 will not physically go shopping. He prefers to buy online, it is cheaper and he can buy specialist stuff not available in shops.

It's not that he can't go shopping and would not cope with this if he had to, but when you add the black and white thinking and not valuing social interaction - even with strangers in a public place - DS1 does not soak up the ambience - the practical result is that he rarely goes shopping IRL because the older he has become the less parents are able to persuade him to do things he does not want to do and he is definitely to old to be carried to the car (as we used to be advised to act).

This was not an issue when he was attending school, but now the same behaviour is labelled 'avoidant'. He has rational (to him) and logical (rigid) reasons for acting as he does. Plus, online shopping is hugely popular because most people agree with DS1. How can a 'normal' behaviour be diagnostic? imo avoidance is only an issue where there is a change in behaviour (not enjoying something that used to give pleasure) and where the so-called avoidant behaviour has a negative impact on day to day living. We all have different levels of tolerance. Knowing what those levels are and then organising action accordingly is not bad even if other people think behaviour 'should' be different.

But all this is a diversion. It is simple really. Placement failed. Lesson learned: placement will fail if you do not deliver provision.

He needs help to transition to another placement. End of. Everything else is just obfuscation and delay.

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Melawati · 07/05/2016 09:58

Will transfer to the new placement cause anxiety? If yes, there needs to be awareness of this and a plan to manage it so that the anxiety (even if specifically school related and not apparent in other areas of his life) doesn't mean the new placement breaks down.
In the draft of DDs Ehcp anxiety is an educational need but it states that support for the anxiety has to come from Camhs working with school (which also corresponds with opinions of two SENCOs I've spoken to who say the expertise just isn't there in school).

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Runningtokeepstill · 07/05/2016 15:16

If I may butt in, this is interesting to me as my ds's low attendance at school and now college is in part due to a physical health condition and a possibly larger part is due to anxiety that comes on when put under pressure to attend and leads to being unable to walk.

I've just put in for an EHCP assessment on his behalf as his post 16 provision is breaking down again and he falls between the cracks in terms of what is around outside college too. He can't get an apprenticeship in this physical and mental state and is too educated for the level one schemes, which is where the funding is locally.

He was referred for ASC assessment due to perceived rigid thinking patterns and social communication problems but this was discontinued as CAMHS (who assess in our area) thought he was unlikely to be on the spectrum and so wouldn't proceed to ADOS.

So we'll be in a similar position of trying to fit anxiety into the mix as something that affects his education and in fact it totally prevents him from accessing education as he just can't get in. Most educational providers (primary school, first secondary school and now college) react to him not getting in much by piling on the pressure, thus ensuring that he won't be able to get in at all.

I wish ds could get some help in managing his anxiety. He's seeing a psychologist privately but he cannot break the pattern. CAMHS have always said they cannot deal with mental health problems arising from physical illness but we are having another go at trying to get them involved. I worry that we'll end up asking the LA for support with online learning even though both ds and I think he needs to be in college, for social contact among other reasons, if only because college may not be able to work around the high absence rate.

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claw12 · 08/05/2016 22:42

Hi keep, good to see you are still here Smile.
www.ipsea.org.uk/what-you-need-to-know/important-case-law/isle-of-wight

Case law this might be helpful, particularly bottom 2 paragraphs

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