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Help! Don't know what to make of this advice (Advocates for Children)

(19 Posts)
KeepOnKeepingOn1 Mon 05-Nov-12 12:39:15

LEA are due to finalise draft statement this week. I have not heard wrt rewrite amendments but I was feeling OK until I received this email:

'Thank you for your email and the attachment. You have set things out very clearly, but I do have to make you aware that you do not have a clear diagnosis for DS and this could create a problem going forward.

An ‘umbrella’ diagnosis encompassing so many different features makes it very difficult to assess which of these features is the one requiring specialist input. That leads to problems with provision because you are unable to focus on one central diagnosis supported by a clear diagnostic assessment. It appears that DS is on the Autistic Spectrum. If so, then that needs to be the starting point from which the diagnostic assessment flows. I have not experienced a child who appears to be on the Autistic Spectrum having so many associated syndromes ascribed to him, and that concerns me. There is one core issue here, and it is that that needs to be addressed first. Certainly the term you have used includes ASD, but it also includes a great deal else and therein could lie the difficulty.

Your contributions are valuable and supported by the reports you have, but I envisage that you may well have difficulty with the LEA when it comes to their response to what is in the draft Statement. They may well challenge the number of issues raised and choose simply to address the one that will cost them the least financially eg dyslexia.

I think that you should seriously consider taking DS to see an Specialist in Autistic Spectrum disorder and getting a clear diagnostic assessment. Then you will know what is directly linked to ASD and what is not.

You are doing a great job in preparing all this material, and I do not want to be discouraging in any way, but I need to point out to you where I think the LEA might go with this, and there is a weakness in your case here.'

What does it mean? confused

Maybe rising panic is preventing me from being able to think but I don't understand why I keep being advised to see a specialist (what are DK and MS ffs). Why are they saying this?

Can anyone help please?

TIA

bochead Mon 05-Nov-12 14:15:41

Simply put it means they don't have the knowledge to help you - ditch them lest they muddy the waters because of their own lack of understanding. They risk causing you problems - not helping you resolve them.

ASD encompasses a variety of disorders within the umbrella they refer to. Do a one pager yourself listing those problems and how you want them tackled;

e.g ASD - ASD trained TA (X hours per week) + staff training for class teacher.
Communications = SALT required +ASD outreach.
Sensory issues - OT needed
Dyslexia - Dyslexia outreach

It's totally normal with a disorder as complex as ASD to need a range of specialists involved in order to obtain their specialist help ffs. Therefore I'm boggled at this letter - do they work for the LA?

alison222 Mon 05-Nov-12 14:25:41

DS has Asperger's. He is high functioning and we have Autism outreach, OT, physio involved and he is not a "complex" child. The LEA's have lots of complex children to deal with. This is normal for them.
Bochead's advice is good and easily understood by the LEA too.

zzzzz Mon 05-Nov-12 14:34:49

I thought support was supposed to be in response to need, not diagnosis????

These people sound odd, and frankly panic inducing.

I like bocs take. List deficits, list appropriate level of support.

How could LA be allowed to drive diagnostic process? My pead would be extremely vocal on that one.

KeepOnKeepingOn1 Mon 05-Nov-12 15:23:40

Thank you all. smile If it weren't for all your experiences to the contrary I would feel even worse.

I would love to dismiss the advice but thought that the charity had kudos and knew what they were talking about:

"Whilst at Bar School, X began doing pro bono work for a tiny charity helping those with disabilities. Her first client was a child with multiple and complex disabilities, whose mother was facing a Special Educational Needs Tribunal. The mother lost her case, due to having no real understanding of the Tribunal process and no one to support her. Her child remained in a mainstream school.

X took on the case, and after forcing a case review by the Local Education Authority, and, without recourse to a second Tribunal, a Special School placement, costing £200,000 per annum, was secured.

In ten years of doing this work, X has never lost a case."

X then set up the charity with a legacy from her late husband. My communications have been with X.

My fear is that she knows something I do not and she is right that the LEA can/will choose one need to address and simply dismiss the reports by DK and MS in the same way as they have done.

Do I have to brace myself for that dismissal despite overwhelming evidence (just like they refused to assess twice) - expect it so that I can just move on to tribunal? I don't want to feel kicked in the guts when I need to gather my strength for the future fight.

btw DK said to me that he is unusually complex (7 elements) but that it is this complexity that means that he is one of the small minority of children that need teaching holistically in ss as in ms there is not the time to implement 15 mins withdrawal from the classroom each day without severely compromising access to the curriculum in key subjects.

bochead Mon 05-Nov-12 15:24:27

My LA somehow manages to drive the diagnostic process sad.

My struggle was a triumph of NEED over formal diagnosis & yes I won at Tribunal without that magic bit of paper. The law occasionally triumphs.

Bitter experience has taught me that people try to bamboozle and confuse you at every turn BUT that if you take Star's advice and remain totally focussed on outcomes then you do stand a fair chance.

I try and remain on target by utilising 3 "rules" picked up from other MNetters

1. Support is supposed to be based on actual NEED, not diagnosis.
2. Support at school is to enable your child to access the National Curriculum.
3. What outcome do I want from any intervention? (eg my child to understand instructions given, or to be able to tie his shoelaces etc).

When I get confused I go back to those 3 points and normally one of them gets me on task.

KeepOnKeepingOn1 Mon 05-Nov-12 15:37:06

boc 'support based on need' is my mantra but I have a horrible feeling that this is just like 'every child matters' and it does not take you long to work out that there is a massive gap between what's written in policy documents and what practically happens on a day-to-day basis in the classroom. I am now unable to say the words 'every child matters' without a sneer because I know it means nothing.

So did your LEA argue they needed a firm diagnosis and was this the main reason why you had to go to Tribunal? (Bloody well done for winning!) In other words do they make decisions/act on 'support based on need' without Tribunal?

Iceflower Mon 05-Nov-12 15:40:41

OMG It's finally clicked with me which Advocates you were talking about. I first heard about them in a blog by Tania Tirrarro, and had considered contacting them.

bochead makes a lot of sense smile.

To be fair to the Advocates you refer to, my LA refers to statements as BESD, ASD, etc, so she's probably harking at this. Most professionals in my LA seem to like hanging a "primary need" round a child and tag on other needs.

But, to repeat, bochead makes a lot of sense grin

Lougle Mon 05-Nov-12 15:43:42

She may be trying to hint to you that 'ASD' is going to be a higher threshold SN for Statement in your LA than some of your other ones. In which case, it would benefit you to be phrasing all those difficulties as ascribed to the ASD, rather than the other potential (or actual) causes.

Having said that, everyone is completely right that all diagnoses or none, it's the needs that matter.

zzzzz Mon 05-Nov-12 15:53:48

The issues are educational NOT medical. They still have a duty to provide equal access to the national curriculum even if you refused them access to your dc's medical records.

This is absolutely unacceptable, we can't have dc diagnosed based on what is most advantageous to LAs, how will we ever be able to gather any statistics on outcomes if dx is so tainted??? shock

KeepOnKeepingOn1 Mon 05-Nov-12 15:58:26

OK that would make sense for the DK report but what about the SALT report by MS? Advocates have dismissed her report as they have issues with the wording 'these features are consistent with an Autistic Spectrum Disorder ICD10'.

Also the indi ss school is not AS/ASD primarily but is also SpLD, ADD, APD (specialist dyslexia school) so it may be problematic having a statement that put ASD as the primary need.

mariammma Mon 05-Nov-12 16:29:29

Am I right in thinking you haven't had an ed psych report?

It may just be that your advocate is pointing out the obvious truth that, when 'medical' specialists make educational recommendations, it's harder for them to contradict 'educational' specialists in complex cases. So, a world expert in asd trumps a generalist ed psych for an asd dc, but is easier to argue against in a complicated dc with a lot of bits an pieces.

bochead Mon 05-Nov-12 16:47:46

So would making ASD the main heading on the one pager & then the other stuff sub-headings get round your point mariammma?

perhaps a sentence at the top saying
Child X's ASD presents as follows:-
Communication issues - blah, blah
Sensory issues - blah, blah etc

The LA argued at Tribunal that the support I wanted was without precendent in an undiagnosed child. The shame is that it ever had to go that far - especially as it all takes so long. The law is the law however so I got what DS needed at that time.

KeepOnKeepingOn1 Mon 05-Nov-12 17:24:25

I think the Advocates are arguing that 'ASD with 6 elements' rather than 'complex neurodevelopmental disorder' with 7 elements including ASD would be a stronger argument. Well, it might be but it would not reflect DS's needs which are complex and compounding rather than serial (primary, secondary etc). Primary ASD would mean that a whole range of provision in (unsuitable) ss and mainstream or dual placement would be argued could meet his needs whereas the LEA have nothing at all that can meet complex needs in the academically able.

What also worried me today was that DS and I had the first visit from EOTAS including a teacher and TA (mob-handed). The teacher wants to do 'functional skills' level 1 - why not the school curriculum? He is supposed to be in year 7 but she was talking about exams at 16 - how he wouldn't have to go to a centre but they would do the marking. Why is she assuming he would be out of school for years to come?

btw EOTAS bod said her desk is next to DS's case-worker and was there anything I wanted her to pass on. I was sorely tempted!

mymatemax Mon 05-Nov-12 17:26:45

Who was that from? What Bollocks

I would politely respond...
"Dear Tosser, thank you for your email, I have indeed tried to provide as much information as possible to help you assess my son & meet his educational needs. As I am sure you agree with such a complex child it is absolutely essential that the provision is taylored to suit my sons individual needs and not a list of diagnosis"
I would be horrified if budgetry constraints were put ahead of my childs needs and allocation of support is decided based on the cheapest diagnosis" etc etc etc.

Was that really from the LEA, leaving themselves wide open.

KeepOnKeepingOn1 Mon 05-Nov-12 17:32:48

Plus, can't I present the information to Tribunal like boc suggests (thank you oh wise one smile) with the diagnostic reports that I have from DK and MS. Why would DS need to be assessed by a Clinical Psychologist?

maria I had a private EP report done last September that focused on dyslexia assessment. The LEA EP did another assessment. On several occasions in the SA evidence he defers to awaited SALT and dev paed assessment which may better explain x, y, z etc. I'd get another one done for Tribunal.

mymatemax Mon 05-Nov-12 17:33:09

just realised that came from a charity, very strange!

Whatever decision your LEA come to your first response should be to ask for the basis for that decision, the criterea they used to assess & their written policy to support it.
often they cant produce a policy, it is then easier to challenge one individuals opinion.

KeepOnKeepingOn1 Mon 05-Nov-12 17:39:23

mymate no this was not from the LEA but advice given by a charity and is more a heads up to how dirty the LEA may play. But even so I would be shocked if they thought they could pick and choose which needs to meet. Having said that I have encountered this from DS's school and the LEA previously. How they laughed together at the ridiculous notion of meeting all his needs at the same time as this would be 'overload'. I thought I had stepped over that crap now.

ArthurPewty Mon 05-Nov-12 19:15:59

Message withdrawn at poster's request.

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