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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Got DLA renewal through!

20 replies

HecateQueenOfWitches · 21/02/2011 08:58

Yay.

for my eldest. younger offspring not due for renewal yet.

He's kept hrc & lrm.

They said lrm because he needs help in "unfamiliar places" despite me saying he needs someone with him ALL the time, and the school writing a letter saying the same thing.

Any of you appealed for hrm for a child with autism on the grounds that they have no sense of danger and that they can't ever be alone outside?

How did it go? what did you say?

OP posts:

annie987 · 21/02/2011 09:01

High rate mobility is for children who are unable to or virtually unable to walk. Nothing to do with needing someone with them.

asdx2 · 21/02/2011 09:15

Ds gets HRM because he has an "arrested development" according to the DWP at tribunal when he was 5. He actually can run like the wind but is never unsupervised for safety's sake.Our indefinite award (he's now 16) is for HRM too so it is possible.

ArthurPewty · 21/02/2011 09:37

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ArthurPewty · 21/02/2011 09:37

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electra · 21/02/2011 09:47

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electra · 21/02/2011 09:48

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Ben10isthespawnofthedevil · 21/02/2011 09:56

My friend has just won her appeal for HRM for her DS who is on the autistic spectrum and got it backdated for 2 years. She won it on Severe Mental Impairment.

I did a statement to go in the appeal comparing my son (who now has dyspraxia/SPD issues that we are getting assessed but at the time of application had no signs) to her son. For example, her son would run across the carpark at Bluewater into the shopping centre, would run away in the middle of town so she couldn't find him etc. Her DS is 5 and she can now get a blue badget as well.

asdx2 · 21/02/2011 10:09

Ds has a normal if in fact above average IQ in so far as he will sit and pass GCSE's this year. Arrested development in the DWP's terms is an incomplete development of the structure of the brain.

shazian · 21/02/2011 11:16

My ds age 10 gets hrc and hrm. He has severe autism but can walk no problem can run like lightenening and can bounce for ages on trampoline. However he didnt walk until 4.6 and has low muscle tone.Selective about when he walks, just sits down when he's had enough (whatever the weather, no matter where you are), he has no communication and no sense of danger. I have to keep hold of his hand at all times. Perhaps he got it on severe mental impairment because he has no real understanding of anything and lives in his own wee world. He is such a little darling :)

Original poster

HecateQueenOfWitches · 21/02/2011 16:08

Thanks.

I wonder if it is worth fighting. I mean, in many ways, especially personal safety, toileting, etc, he operates at toddler level, but he is in mainstream school (with full time 1:1), and he's talking.

His next renewal is 2015. I doubt he will have stopped being autistic or having erbs palsy in four years. I don't quite know what they think is going to change. But he'll be what? 16 then. If he is still requiring the level of supervision of a toddler at 16, then what?

It's just the acknowledgement that he has a very high care and support need, you know? As he gets older and the question of his adult support needs is out there, I just want to know that he will have all the support he needs for his future. If they are saying that he can get around on his own - he's too vulnerable! I want them all to acknowledge that he's not safe!!

And I've got all this again with ds2 when his renewal is due.

OP posts:

asdx2 · 21/02/2011 16:14

At 16 you have to fill in the adult claim so that's why it stops there. Ds is in a unit in mainstream although have requested specialist provision for next year.Ds can talk but doesn't or is no longer able to at present although he could at his last renewal at eight.I would ask for a reconsideration of the mobility award and see how it goes if I were you.

Original poster

HecateQueenOfWitches · 21/02/2011 16:22

aah, I see. That makes sense

I think I will, maybe. I don't know I just want proper recognition of the extent of his difficulties and his support needs, you know? One day I might not be there to fight for him.

OTOH, I read something recently about family court being used to legally prevent parents from being involved with their adult offspring if they are arguing with the 'professionals'. That's scared me a lot. Made me fear that if I try to challenge them, and am too stubborn and demanding (as I have always been in fighting for my kids!) they could use the law to stop me from being in their lives.

OP posts:

shazian · 21/02/2011 16:23

Why not go onto NAS website as Leonie suggested and see what it says there. Think i would ask for reconsideration for HRM, perhaps you never gave enough information. These forms are a nightmare, dreading when mines due for renewal

Original poster

HecateQueenOfWitches · 21/02/2011 16:26

Yes. will take a look.

Oh, not enough information - I sent them a 3 page typed letter from me detailing his needs, a letter from his physio, a letter from the school, a letter from his doctor, a copy of his statement....

The pile of supporting evidence I sent in was so big you could have used it to beat whales to death

Mind you, I was on another thread with someone who was saying that they send in their renewal with a FORTY TWO PAGE REPORT they'd written!

OP posts:

Lougle · 21/02/2011 17:12

DD1 can walk. She is wobbly, and falls over, but she can walk. However, she is unable to be outside the house without constant restraint (btw, even a hand on the arm is 'restraint' in the eyes of the law). On her DLA form, in the box that asked 'how far can she walk without severe discomfort' I wrote '0' with a note by the side saying 'unable to walk outside without restraint at all times'.

She was awarded HRM due to being 'virtually unable to walk given the time, distance and manner over which she can walk without severe discomfort'.

Now, the fact isn't how far 'technically' they can walk. It is down to whether their ability to walk is affected to such an extent by their disability that they can be considered 'virtually unable to walk'. In DD1's case, the fact that she would step out in front of a car to pick up a stone, the fact that she would walk in any direction but the one we are going in, and the fact that she has absolutely no sense of danger or consequences, and will not obey commands unless she was going to do that anyway, all contribute towards that.

You should ask for a reconsideration. You should detail all the factors that interact and combine to make your DS unable to walk, despite the physical function of his legs.

If he is 11 and still functioning at the age of a toddler for safety and so on, then he certainly needs more than a bit of guidance, don't you think?

Original poster

HecateQueenOfWitches · 21/02/2011 17:16

Yes. I do. He can't cross a road without someone! The park is at the end of our road, he can't go there alone. You need to be at his side all the time.

When I see other children his age, strolling down the street with their mates, or heading off on the bus to watch a film, or piling into mcdonalds, and he is there with me holding his hand and directing his every movement, it's just not FAIR poor little sod. It's just not fair for him.

OP posts:

Lougle · 21/02/2011 17:26

The thing is Hecate (sorry I always bang on about this), that it doesn't matter how mcuh you write, it is what you write that matters.

You have to use the phrases they have in their DM's guide, so that they can say 'ooh guidance' tick. 'ooooohhh supervision' tick. 'ahhhaaaaa attention.....'

Because they don't have room in their criteria for 'dislikes' 'likes to have someone with them' 'needs a bit of help', etc. They have hundreds of forms to read, and they will be scanning them for salient information.

They want to know

What he needs
Why he needs it
What would happen if he didn't get it
How is it different from a typical 11 year old?

That's it.

Not 'it hurts' but 'the pain means I have to spend 3 hours rubbing his calf muscles'.

Not 'he's anxious' but 'his anxiety means that we can't leave the house until I have completed a 25 point check list, in order, double checking points 3-8 and sing a special song'.

It is going beyond the difficulties into the consequences.

Not to say that you haven't done that, but just saying, it isn't what you do, it's how you write it.

Original poster

HecateQueenOfWitches · 21/02/2011 17:38

No, you're right. I thought I had been quite specific. that he has no sense of danger, that he is vulnerable and at risk. But clearly I haven't worded it right or they would have understood.

OP posts:

Lougle · 21/02/2011 18:00

Well, no, don't go that far The fact is that they will give the award that, on the balance of probabilities, is the most appropriate one. They will sometimes get that wrong and award higher than they should, and other times get it wrong and award lower than they should.

The trouble with mobility, is that annie987 has a point.

Mobility has three 'streams' for award of HRM.

Unable to walk at all
Virtually unable to walk
Severe Mental Impairment and severe inpairment of social functioning and severe behavioural problems.

So, a passive child with ASD would fail criteria 3 straight out.

However, there have been cases where a child gets HRM because they can't walk purposefully, and therefore are deemed 'virtually unable to walk'.

The question you need to ask yourself, is if you let your DS walk unaided, would he make progress on foot? Or would he get interested in a bit of brick wall and forget where he was going, or walk out in front of a car, etc.?

It is those sorts of arguments that can contribute towards a HRM claim.

Original poster

HecateQueenOfWitches · 21/02/2011 18:10

If he walked unaided he may go straight to where he is going.

or he may run across the road

or he may go in the opposite direction

or he may stand stock still

I tried to get across the unpredicatibility of him. iyswim. He doesn't 'always' do anything. he is always capable of doing the unexpected!

Now, my younger child! If you haven't got him by the collar he will go under a bus!

OP posts:

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