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have just had letter published in local paper(same paper as annies) Not a bad letter but they do tend to pick out the bits they want :rolleyes: I was questioning why the lea would no longer agree to statutory assess children with so called high incidence conditions(according to their criteria for stat. ass.) I asked how much money the lea were hoping to save.The council spokesman said the intention is not to cut costs, but to distribute funding to enable schools and early years settings to meet the needs of children earlier without the need for a stat.ass. blah, blah, blah heard it all before :whistle:

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:clap::clap:B)B) Yipeeeeee

 

The paper's keeping it's word..........they said they wanted to keep it going B)

 

As for what the council spokesman said *?!*?!? :o I agree, we have heard it all before.

 

Have you seen our LEAs criteria for assessment for ASD children?. I've asked IPSEA to look at it. They list ASD difficulties, then state that

 

'Those behaviours will be of such intensity and severity that social and academic progress are prevented and progress is long term, complex and profound'.

 

It also states that

 

'A diagnosis of Autism Spectrum Disorder will be necessary'.

 

In my e-mail to IPSEA I've pointed out that - every ASD child is different and going by their criteria, if only a couple of the difficulties are intense and sever, it appears that the LEA will not assess. I've also pointed out that a diagnosis is VERY difficult to get and can sometimes take years. Also, on the IPSEA website It says that the words 'long term' and 'complex' as criteria are illiegal. I'll let you know when I hear something back.

 

 

Annie

>:D<<'>

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We are hoping for official diagnosis for our daughter next Wednesday. But she started secondary school last year and the SEN department has been wonderful.

 

One bit of information I did pick up from the SENCO was the government is now lowering the targets for statements and many LEA's including ours have set lower targets for statements in accordance.

 

Our request for statementing was denied, though the panel did send an advisor to discuss the issues with the SENCO who invited me to the meeting.

 

At present we are not appealing the decision. The advisor has asked for certain measures to be put in place which could be coped with at School Action Plus and will be monitoring how she does.

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Hi OddFather,

 

Welcome to the forum. :thumbs: You'll find lots of info here and lots of very supportive people, whenever you need them.

 

That's fantastic that you have a supportive SEN department and advisor. It really helps.

 

Good luck on Wednesday.

 

Annie

>:D<<'>

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Our LEA criteria says children must show significant difficulties in the 3 areas of impairment - they will display a range of behaviours which will include at least three in each of the impairments.

 

Then follows the basic description of ASD we all know and love so well.

 

They add: The degree and complexity of these behaviours...will need to be assessed against:

 

- the inappropriateness of the behaviour

- the frequency of behaviour

- its intensity

- its persistence over time

 

The venerable panel have stated that my daughter's "degree and complexity of behaviours have not persisted over time". Translated, that means: "Oh God, this child is going to cost us an awful lot of money - quick, how can we get out of this one?" :wacko:

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They add: The degree and complexity of these behaviours...will need to be assessed against:

 

- the inappropriateness of the behaviour

- the frequency of behaviour

- its intensity

- its persistence over time

 

This is the bit that worries me. Not all parents spend their time building up and maintaining a dossier on their children's problems. If they are getting appropriate help and are doing well they are happy. They do not think to ask that their child be put on a SEN register and all input be documented.

 

A few years later everything goes haywire. They are no longer getting the support and everything collapses but as a parent you have no proof that their problems have always existed. This is exacerbated by the past leaning towards positive reporting where any report with details of any difficulties experienced is thrown back at the originate to alter.

 

I don't know whether we will have a problem but the lack of evidence from the past was one of the things the LEA called us in to explain before they would agree to assess.

 

I really think it's wrong that you have to show a past history, particularly with something as complex as ASD. By it's very nature many higher functioning children do appear to cope in the early years but as the social rules become more complex they are left to flounder. It is wrong that they should be left to struggle for years just to build up evidence, they need help immediately to avoid life long mental health problems.

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Hi Kathryn,

 

This is the full wording for our LEA's ASD criteria for assessment.

 

It must be emphasised that most children with Autism will be educated without statements but using the additional resources delegated to schools.

 

Only the cases of children that display the following levels of Autism, requiring additional resources to those available within school will be considered for statutory assessment.

 

Those identified behaviours will be of such intensity and severity that social and academic progress are prevented and the need is complex, long term and profound.

 

* Social relationships with peers are severly restricted. Physical contact is rejected especially at time of distress.

 

*Lack of engagement in symbolic play/activities (early years only).

 

*Considerable distress over small changes in the environment or routine.

 

*Abnormal responses to sensory experiences and signs of distress or emotional disturbance without obvious cause.

 

*Highly atypical behaviours such as : persistant preoccupation with objects, patterns or stereotyped body movements.

 

*Physically challenging behaviours.

 

A diagnosis of Autism Spectrum Disorder will also be necessary.

 

 

 

We are lucky enough to have a statement already. but the above is b****y stupid. Without even getting to whether it is legal or not, (I'm still waiting to hear). How long can it take to get a diagnosis?.

 

So what they are saying is even displaying everything else, no diagnosis - no assessment :angry:

 

I think it is disgusting what has happened to you .

 

Annie

>:D<<'>

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Exactly Tez. My daughter's ability to cope over 10 years keeps being held against her. The first concrete evidence of her difficulties came at age 11. She didn't bat an eyelid when she started school, in fact she went quite happily at first, and later on just kept all the angst and frustration locked in :( .

 

Now they are trying to pin her problems on a reaction to her dx rather than an adverse response to a hostile school environment. :angry: The underlying message is that these neurotic middle class parents took a perfectly normal child and screwed her up by getting a label of ASD for no particular reason- no wonder she got depressed.

 

The truth is quite the opposite - her depression and self harm gave rise to the urgent need for a dx so that the cause could be recognised and addressed.

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And the truth is that this is the case with many of today's teenagers. It must be remembered that Asperger's Syndrome wasn't even officially recognised in this country until about 1991 and even today many GPs, including my own who's only in his 30s, have no knowledge of it.

 

My son was diagnosed in a matter of weeks when things became desparate. I must also be screwing my child up (I don't think), although the school SENCO thinks he has no real problems that trying a bit harder to get on with people wouldn't solve.

 

Try and keep strong and keep fighting, you know you are right.

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Hi Annie -

 

Cross- posting here: sorry!

 

According to my IPSEA tribunal handbook any criteria other than the ability of a school to meet the child's needs without additional resources, are illegal. That means even an ASD dx isn't strictly necessary. I'd be interested to hear what IPSEA have to say though. My LEA are already one of 4 which they have reported to the DFES for using similarly illegal criteria in statutory assessment decisions. (see IPSEA website)

 

Tez - sounds like our SENCO who lectured my daughter about the importance of fitting in.

 

K

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Kathryn/Annie

 

Where did you get hold of your LEAS' ASD criteria for assessment? Is it something I can easily get hold of from my LEA?

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Kathryn,

 

IPSEA already have a court case against my LEA on their site. Thank god for IPSEA eh?

 

I'll let you know when I hear something back from them.

 

SENCOs are great aren't they :angry: Mine told my son, in a meeting with our LEA that there was nothing wrong with him, all he needed was a kick up the bum. Needless to say, he's not there anymore.

 

Tez,

 

You should find it on your local council's website. Ours was VERY hard to find, maybe deliberately :wacko: It was under 'policies and documents' somewhere in 'education'.

 

Annie

XX

Edited by annie

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Hi All,

 

What is coming across in all our postings is that the LEA's are standing their ground - albeit shaky, and many parents will be overwhelmed and intimidated by the gobbledegook cr*p that they spout.

 

The law has not changed on the criteria for statementing. All that is happening is that LEA's are applying criteria that is unlawful and by the law of averages, parents will walk away from this because they will not know that this is unlawful and that it can be challenged. I have been guilty of being knocked down by the lea when I appealed against their decision to commence the statutory assessment. A very clever officer asked me to provide the absolute definition of 'complex needs' when I said that my child had complex and long term needs. I nearly gave up as I felt that I was out of my depth. Nevertheless, I went to an independent EP who gave me a right slapping for considering that my child had complex needs and directed me to our local Special School to look at children with Cerebral Palsy etc, and then to consider whether I was right to pursue a statement.

 

It is all weighted to knock us down.

 

All I can suggest is that we do as we are doing - support each other and those of us who are that much further down the line, cascade back to other parents the knowledge that we have learned along the way.

 

Love to all

 

HelenL

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Oh and I forgot to add - when we have got to that point in our life that we have some spare time :lol: We should involve ourselves in IPSEA or NAS as volunteers to srengthen our position.

 

Best wishes

 

HelenL

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Well said Helen,

 

We are led to believe that LEAs know what's best. The further down the statementing process you go, you realise that it is not true. Parents feel that they are powerless, but as forums like this show.......they are not.

 

Annie (AKA Dale chip chip)

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Helen,

 

Just saw your last post.

 

IPSEA are looking for people at the moment. Not that I have a peep at their site everyday or anything :lol:

 

Could this forum have anything to do with the fact that they have so much work.

 

Dale :lol:

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It must be remembered that Asperger's Syndrome wasn't even officially recognised in this country until about 1991 and even today many GPs, including my own who's only in his 30s, have no knowledge of it.

 

It didn't achieve mainstream recognition until the second half of the 1990s. When I started university 10 years ago I had a medical form that didn't mention AS. It just had a box for mental health difficulties.

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IPSEA are looking for people at the moment. Not that I have a peep at their site everyday or anything 

 

Could this forum have anything to do with the fact that they have so much work.

 

Annie,

 

I've been thinking of volunteering, I feel a bit guilty for passing their link to so many people. Too busy right now though.

 

Nellie xx

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Nellie,

 

I would love to do it as well, but with the education package that Alex has it works out that his lessons are between the hours of 11am and 3pm, so I have to run him around between those times.

 

I've been giving IPSEA's details to people in my area as well as on the forum :oops::lol: They are so good at what they do :thumbs:

 

Annie

>:D<<'>

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Hi guys,

 

I am not sure that it will impact too much on our own lives. I think that we have to commit to so many cases per year if we do the advocate service or so many hours every few weeks on the helpline service.

 

I am being helped by an advocate from NAS at the moment and we respect that we may have other things going on.

 

My lady has had illness in her family and it is only right that she is given the time to deal with her family - she is a volunteer, but I think that she also copies in to the NAS, the files notes so that they could take over if she was incapacitated.

 

We do a great job on here - without any doubt - but how many of us see postings where there is aniexty caused by not being able to get help NOWfrom IPSEA and NAS.

 

Not saying we are all at that place, but when we are, could we not give a few hours via IPSEA and NAS to formalise our help?

 

This is how we get there. A united, and effective front coming from a mainstream and recognised volutary organisation.

 

Best wishes

 

HelenL

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Thanks for the welcome Annie 8)

 

I often feel a little out of place in forums for Aspergers and ASD, mainly because we do not seem to have suffered many of the trials other parents seem to have gone through.

 

Yes we knew there was something 'different' about her, and since learning about Aspergers I know my attitude has undergone some fundamental changes. However where discipline is involved I seem to be very much the odd one out.

 

She has a very clever mind, learnt to speak to adults in an intelligent way very early on. But as she got older there seemed to be an odd mixture of maturity with a very 'childlike simplicity' which seemed to contradict each other. This seemed to cause a lot of problems with peers who in the past have viewed her as simple.

 

She does have motor skills issues, but through pure determination and application managed to represent her primary school in the tag rugby team. She was never realy any good and was more a liability for the team. In one game she put her hands up to catch the ball, realised it was heading her way and in one fluid movement her hands came down to cover her head :lol:

 

I know we have been very fortunate, and I have little doubt about the diagnosis but quite simply I often feel I'm in the wrong place.

 

What has been interesting is though is when reading many of these problems they seem more related to my own youth, and in some respects how I am now more then they do for my daughter.

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OddFather, welcome and don't feel you are out of place! People who have positive experiences give hope to those of us who are struggling.

 

Tez - My parent partnership rep got the criteria for me - try them if you can't find yours online. The LEA also provided me with a copy in their latest letter: presumably they thought I needed educating about ASD's . :wacko:

 

Re: volunteering - this was something I had definitely planned to do, either with IPSEA or the NAS when my daughter's situation was sorted out. After all I've had excellent training from my LEA. :devil: Alas I'm still embroiled in the whole mess and that will have to wait a little longer, but I will do it one day. When I was really angry a few weeks ago I even had the wild idea of becoming an SEN lawyer so I can make it my life's work to kick the a** of every LEA in the country but the whole process of qualifying and studying all over again is too daunting. :hypno:

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Hi Katheryn,

 

Thanks for your kind words.

 

Re: Volunteering

 

Anyone who is interested in doing voluntary work, and would like to make a difference not only for their own children but others I would encourage you to consider becoming a school governor. Either as a parent governor at your own childs school, or approach your LEA governor support team and let them know you would be interested in doing this at another school.

 

It would certainly give a different perspective of the workings of the school, and the LEA. Plus you are in a better position to ask questions and get answers. Also the LEA will run free training courses to equip you with the skills and knowledge you need to function as a governor. As part of this training is to allow school governors to run the school withing current legislation and guidelines you will not be fobbed off with the usual excuses.

 

I will add a note of caution, if you want to become a governor to 'kick ass' then it probably isn't the best thing for you. If you are however genuinely interested in helping your school to meet its obligations and to make a difference then it is for you.

 

I thoroughly enjoyed my time as a school governor, until I became a SEN governor and found out one of the real reasons why the school was in special measures. Becoming tired and frustrated that I was constantly being kept out of the loop and so unable to make a difference and the opportunity to make a difference on the estate I live on was the eventual reason I chose to resign. But it can still be very rewarding.

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Being a school governor is definitely a good route in to making a difference from within the system, and I definitely think more parents like us should do it, we might then be on hand to notice when the SEN budget is being used to redecorate the head's study. You're right though, I don't think it's for me - not right now, anyway. I think I would find it very difficult to trust, let alone work cooperatively with any LEA official in this county so I'll stick to making trouble from without. :ph34r:

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