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EP and Pead unable / unwilling to state severity

(30 Posts)
2boysnamedR Thu 18-Feb-16 13:20:31

Ds has asd and was diagnosed soon after he turned three. He starts school in September is going through special school / ehcp panels.

He is non verbal - has about ten words he uses sometimes.

School places are allocated on severity of learning difficulty but no one will tell me his level of learning difficulties or his autism.

I asked the EP what his level of learning difficulty was. They wouldn't / couldn't say.

Then I asked what kind of setting was needed - again wouldn't say.

So all paperwork will state his needs but not his level of need - I asked if he's going to end upon MS - couldn't say! They can only record my opinion he will implode there.

Would a private EP be able to tell if he is non verbal and unable / unwilling to engage with them?

I'm not appealing again unless it's for the final goal. Ie changing his setting perminatly. I'm not doing any appeals to assess etc. I would rather keep my mental health intact

zzzzz Thu 18-Feb-16 13:29:43

Describe him as severe and learning disabled yourself and ask them to prove he isn't..

Ineedmorepatience Thu 18-Feb-16 15:40:45

I think if an EP could engage him they could find out his level of understanding, as could a decent SALT!

Having said that I agree with zzzzz and he clearly does have some significant difficulties eg communication!

2boysnamedR Thu 18-Feb-16 15:57:24

Thanks both. With my older boy I know moderate and severe. Compair ing ds2 severe and ds3 this is profound. I would say he has profound needs

2boysnamedR Thu 18-Feb-16 15:58:56

Plus he is four next month. In no universe is he comparable to any four year old. Neither is he showing any glint of having possibility to catch up

2boysnamedR Thu 18-Feb-16 16:03:42

I'm going to get my 12 year old to utube him. Maybe I can get some perspective from you knowledgable lot;0)

GraciesMansion Thu 18-Feb-16 16:08:31

The SEN panel will decide on the severity, based on the description of his needs. The new code of practice moved very much away from descriptors using percentiles, for instance, and now it's all about determining level of need.

2boysnamedR Thu 18-Feb-16 16:30:14

Well I hope someone at some point fills me in.

Yet again I'm left feeling that it's no big deal that my kid can't talk. It's not the first time this week I have been severely tempted to disengage with this one size fits all society.

I can practice my simpering "oh isn't he doing well" when he can finally say mummy at 21 and stop wetting himself

I kind of wish if he's headed for mainstream ( still doing the ehcp) that life would leave us alone

ouryve Thu 18-Feb-16 16:37:18

We've never had any committed opinion on whether DS2 has SLD or not. People are blinded by what he can do. I take zzzzz's approach. If challenged, I make no bones about what he can't do.

Ineedmorepatience Thu 18-Feb-16 16:54:40

gracies, I dont see how you can determine need accurately without some form of understanding of where a child is at!

I am sure that the new sencop is not advocating notnhavung a clear understanding of a child's needs in fact I know the opposite is true!

Ineedmorepatience Thu 18-Feb-16 16:55:10

"Not having" blush

zzzzz Thu 18-Feb-16 16:56:48

To be fair I do have a massive advantage on assessing ds1s potential on ALL the professionals because he simply NEVER learns anything outside the house, so they would be rather fucked if I didn't tell them what he can do.

State what you want, say why, and worry about the detail later. As you can tell I am in a lull in paperwork. You know one of those magic weeks of waiting to see just how arsey it's going to get. I am trying to access my inner zen.

I've been deleted once already this week which probably means I should stop posting but I probably won't grin

Ineedmorepatience Thu 18-Feb-16 17:12:41

Deleted from MN zzzzz? Why? Dont stop posting, we need you smile

zzzzz Thu 18-Feb-16 17:19:43

Only ONE post. I told someone she was an arse....In my defence she invited me to.

I am total MN fan and couldn't stop if I tried. It keeps me sane and in another few years ds will be home for good (ie adult) and I will need somewhere to call people arses grin

Ineedmorepatience Thu 18-Feb-16 17:31:49

Oh shock horror!! grin I am sure she must have deserved it! People get upset by the daftest things dont they? They can slag each other off left right and centre but they cant take it back!

GraciesMansion Thu 18-Feb-16 17:35:22

Yes, the COP expects that those asked for advice can provide accurate information regarding needs but there has definitely been a shift away from using absolute measures such as cognitive scores because in many cases they tell you nothing about a child's functioning.

zzzzz Thu 18-Feb-16 17:39:46

I think she had lead quite a blinkered sheltered life and was unused to being thought of badly unless she was meaning to be bad. It was a nothing really.

I find the main boards odd. So often people get furiously angry at something they think you said. You say "ahem I didn't say that" and they just carry on confused On the whole the SN boards are saner BUT I can't really call my homeys "arses" now can I?

grin

Ineedmorepatience Thu 18-Feb-16 17:48:01

Yeah, I generally stay off the main boards!

2boysnamedR Thu 18-Feb-16 18:13:46

The main boards are like a glimpes into the twilight zone but I do love MN in all its forms.

Just think how lovely it must be to get worked into a froth over trivia. I can't even get into a froth over my sons headmaster now ( well I could summon up the energy if prodded enough)

Thing is the pead has a PhD and years ( decades) of experience with asd in all its forms.

EP has a PhD ( I hope to god)

No offence but the panel is a bunch of civil servants with "five GCSE grade c and above" like pottery, RE, history, basket weaving and PE

I was a civil servant once. I didn't work with PhD people. Unless they was contractors. Again no offence but this feels like madness.

I could say ds loves to watch documentarys on Astro physics and at home he likes to play the flute by ear. When did cold hard facts stop mattering to the LA? Everything from parents has to be proven but the LA "can feel it their water?"

I will have two words for his mainstream hand over - good luck. I'm not propping things up when he shits on the carpets and bites his teacher

Ineedmorepatience Thu 18-Feb-16 18:35:12

And this is what is supposed to be a person centred approach 2boys confused

My LA are constantly hiding behind their illegal "panels" they dont apply the law and it depends on who is there on the day!

Scary but I think that things will change quickly if he does ahit on the carpet and bite the teacher but that is so not fair on him angrysad

2boysnamedR Thu 18-Feb-16 18:57:47

I am sorry to say it but a professional person has suggested if he he does go into ms and hits people but they minimise that I should put Coke on his cornflakes to draw more attention as a joke. I noted that mentally.

I did say to the EP. I give too hoots here. 1) He's a happy soul, his mental health is all he has. 2) He needs to communicate by any means. If that means learning smoke signals by native red Indians so be it.

What I didn't say is that I am a vet in this crap now. No wool will be pulled over my eyes. If I don't appeal his placement or ehcp is because I'm planning my death strike.

I'm going to put out the rope and gallows and when they expel him to a pru someone is going to hang and I will not be me this time.

As a side note this is killing me. In fact I could be partly emotional dead already. How does this help in the long run? "What do you think Mrs2boys? Yea well no one gives a crap, but I had to ask. Any questions? Sorry I can't tell you my findings from my three hour visit. I think though that he is 1) human 2) male 3) under school age. I hope that reassures you my dear. Do run along and do some housework like a good little simple mummy"

Ineedmorepatience Thu 18-Feb-16 19:23:17

Jeeze!!

yakkiyakkiyogi Thu 18-Feb-16 19:33:13

OP I'm in a similar predicament at the moment too. DS (4 next month) is due to start reception in September. He has dx of ASD, GDD and is pre-verbal (no words at all and understands as much as an 8 month old would). Overall he is a happy boy and settles in easily once he is familiar with the environment and grown ups. He currently goes to a nursery attached to a primary school that has a experience with ASD children (they have a DSP for older kids) and is ok there for now. However, Ive wanted him to be in a special school since he started here seeing how profound the difference is between him and his peers from day 1.

We've been rejected twice by the SEN panel for the special school despite the fact that its clear as day that MS is not suitable for him. What's sooooo frustrating is that the current school's SENCO had submitted an excellently worded letter stating that MS is unsuitable for him from September onwards and they would not be able to meet his needs successfully as he wont be able to cope. They still rejected. I fail to understand the logic behind this. Whats more is that SENDIASS keep telling me its against the law to refuse a place for a child with such a level of needs on the basis of "oh we had 26 applications for 3 places". The lady from SENDIASS says they have to make a space. I've even spoken to 2 people who have previously worked at that special school and they have said that the school always creates a new class to accommodate the new intakes with such obvious needs.

All I'm left with now is to appeal and apparently I have to pay for all the legal fees etc because I won't be eligible for legal aid and don't know if this is true but the SEND tribunal is supposedly in Darlington so God knows how I'll get there and back on the day with DS with me. AAAAAARRRGGGHHHH freaking out here!!!!

2boysnamedR Thu 18-Feb-16 19:54:48

They hold hearings all over the country - only the office is in Darlington so don't worry about that.

At what stage can you appeal? Do you need the ehcp stating placement to appeal?

No my situation the nursery has said normally parents strongly disagree with the panel placements and then the school will fight on your behalf. That normally works.

But it's all new to me and clearly following no known procedure!

I have been told that ds will need 30 hours 1:1 in MS, weekly SLT, Makaton and that alone puts the cost above a special school. But Makaton is also over and above what any special school can provide so he will need a lot of extra funding there too. Yet MS and MS units is still being banded about. It's nuts. There are more kids than places going to panel, some kids on odds alone have to go to MS. But he is at a 12 month old stage.

yakkiyakkiyogi Thu 18-Feb-16 20:29:01

Same here. He is tracked at 8 - 12 months and to be honest at times combined with all his sensory issues, feeding issues etc, he seems even younger developmentally. They need to have some perspective I think. I've seen much more "able" children than DS at the special school (not that I'm saying they or their parents face any less difficulties than I do, I'm sure everyone struggles). All I'm baffled by is them blatantly saying to my face that he is fine where he is and his needs can be met in MS when it can't be more obvious that they can't be. I feel MS will mean missing out on the window of opportunity I can see for him to gain some ground on the functional skills relevant to him that can't be achieved in MS in a million years. Also, he is already soooo isolated in his nursery, he will be like he's on a different planet in reception. Even now, the kids have have asked me questions like "is he a baby", "why does he talk like that" (meaning babbles) etc. Breaks my heart and makes me ever so angry sad

I'm glad though that I won't have to travel halfway across the country to get them to see what my son so obviously needs. I think the appeal stage comes after a school is named against the parent's wishes on the EHC plan. I've had his first draft EHC (overdelayed too) and have asked them to make a million changes to it, they will be sending a second draft which once approved by me will go on to being the final version. The panel for the special school was last week and I've been calling SEN every 2 days since to know the result and only today they called back to tell me he's been refused again and a letter with reasons etc will follow.

I didn't know that the school can argue this on my behalf but I will surely speak to the SENCo first thing after half term.

God help us with these kind of illogical and unreasonable decision makers of our children's futures angrysad

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