Here some suggested organisations that offer expert advice on SN.
DLA for hf autism?(17 Posts)
Was speaking to some parents of autistic children and they said 'you must claim'. Hadn't thought of it before.
(What follows is a description of what I think might be releavant for claiming DLA)
Our son is 8 years old, and has a 7-page report from the paediatric doctor as having an ASD [he is high-functioning/what you might call aspergers, though that wasn't in his diagnois]
She said "He is a lovely boy. He is bright and gifted at Maths"
"he will require specific teaching of social skills" and "he would benefit from speech & language therapy input to school"
Re 'lovely' basically he is not ever violent and generally is easy-going.
Some of the notes from the report
"He is safe to be left alone in a room or the garden. He needs watching on the roads, as he will tend to go into the road."
"He finds it difficult to follow instructions, he will do a part and then gets distracted" "has difficulty remembering sequences of instructions"
She noted that he tends to let other people push in front of him in queues, because he gets distracted. [Also if we say 'go pay for this' in a shop, he is going to need supervision - he won't be sure where to pay, whom to give the money to, he won't follow the queue, etc.]
Regarding mobility we like to ride bikes, but he's not really safe on the road.
For example we're riding along the road and he moves out towards the centre a little just as a car passes. I say to him 'did you hear that car coming up behind' [his hearing is fine, we've had it tested], he says 'yes', but he is unable to explain why he moved out towards the oncoming car.
Another time we were going along the road and he was a little ahead of me. We needed to turn right. I shouted at him to 'wait' and he didn't acknowledge me. Shouted it again and he turned right into the (very visible) oncoming car. No harm done as the car stopped. I asked him 'why did you do that?'. 'I thought you said right'. He doesn't really understand where he's supposed to position for turning, either, no matter how many times he's told, and he doesn't pick it up intuitively.
So I've bought an (expensive) bike to take him on with me because of the dangers there.
Walking is basically ok - he doesn't run into the road randomly, but he does need someone to walk with him.
His behaviour isn't really problematic, he's more passive than anything. One time he was in a mixed activity with children age 8-16. I went down to watch and found one of the older children holding his head down against the ground. He wasn't saying anything. I asked him why he didn't protest, but he said he didn't know why.
When he's school he's generally compliant but he will rely on watching other children do rather than listening to instructions. He regularly loses his games kit, and has come home with one sock on a few occasions, lost books, etc.
He needs supervision when he's getting changed, getting ready for bed, otherwise he will invariably get distracted by something, anything, and not finish the task.
This weekend he accidentally dropped my laptop on the floor causing several hundred pounds of damage. Not sure how it happened, he's not very good at explaining things to people who weren't there.
As he gets older (well, from now) he's going to need a lot of (expensive) social skills training so he understands how to play and interact with other children. He's bad at joining in, prefers to find younger children whom he can tell what to do. At the moment his peers are fairly tolerant, but he's going to be more at risk as he grows up.
He doesn't have any particular routines, sensory issues, doesn't throw tantrums in public generally, though he does at home - he gets angry when he's told he's done his homework wrong, doesn't like to listen to criticism or suggestions how to do things better 'I KNOW' he shouts (he doesn't usually), and bursts into tear and stomps off, so it is difficult for us to instruct him (I believe he is fine at school).
He achieves well in maths and music and ok generally otherwise (in a mainstream school), though when the speech + language assessment was done he came around the 5th percentile for things like inference or figuring out what's happening in a picture (by comparison his reading age is 13ish).
If you think your child requires more care than another child of their age.. Then it's only a form they will yay or nay it. Do I say go for it.
Get everything together, reports, diary etc phone them up and ask for a dla form for a child under 16.
And get the wine in!
Would really recommend asking a friend with a NY child of the same age some of the stuff on the form...I was amazed how much I had got so used to DS difficulties, I kind of assumed all children were like this..it wasnt until I did a step by step comparison, that it became very clear that he requires a considerably higher level of support than his peer group-and yes I did get DLA (HFA/dyspraxia).
Would also second getting the wine in...its one hell of a form...
I meant NT of course-no idea how New York got in there..
My son to is more on the HF side of the spectrum and we have just been awarded MRC and LRM! He is coming up to 5!
As mentioned the form is stressful allow plenty of time unlike me who left it right till the last minute! x
My almost 7 year old has HFA and gets LRM and MRC. Admittedly, he's not passive and can't be left alone for a minute, sometimes. He's academically gifted in many respects, but the fact remains that his care needs are greater than for a typical child his age and that he wanders into roads and angrily prostrates himself at random.
It's good strong tea that gets me through my forms I need to renew DS2's in the new year, since he'll be 5 in the Spring. Fun
I'm doing it online, so it's back-dated to today.
I got through the name + address questions no problems, but the rest is proving a little trickier.
Does anyone have a sample HFA/Aspergers complete form where I can get some inspiration? I'm reading the cerebra guide but it's not very specific....
from Loughle back in october.
Lougle Tue 12-Oct-10 18:07:20
"Severe behavioural problems
61376 People are treated as having severe behavioural problems if they exhibit disruptive
1. is extreme and
2. regularly requires another person to intervene and physically restrain them
2.1 to prevent them injuring themselves or others or
2.2 damaging property and
3. is so unpredictable that they require another person to be present watching
over them whenever they are awake1.
It is essential that all three conditions are satisfied. The disruptive behaviour does
not need to be displayed at all times but it must be extreme. The word extreme is
an ordinary English word which here refers to behaviour which is wholly out of the
1 SS (DLA) Regs, reg 12(6)
61377 People who have severe behavioural problems may
1. be destructive
2. be reckless with dangerous things
3. be aggressive and attention seeking
4. self-mutilate or abuse themselves
5. be hyperactive
6. display persistent body movements
7. disrupt the household during the night.
Note: This list is not exhaustive.
61378 The conditions at DMG 61376 can only be satisfied if the disruptive behaviour is
1. a regular occurrence and
2. a constant risk.
Aggression, destructiveness, hyperactivity and self injury may require physical
61379 The claimants behaviour must be so destructive and unpredictable that they require
the presence of another person to watch over them whenever they are awake. This
is in all aspects of the claimants life both indoors and out. If a claimant displays
behavioural problems at home but elsewhere, for example at school, is well
behaved then the test will not be satisfied.
Jane, although displaying some behavioural problems, is capable of playing alone in
her room with the door closed. The claim to the higher rate of the DLA mobility
component failed as the carer is not required to be present and watching over Jane
whenever she is awake as the bedroom door was closed with the carer on one side
and Jane on the other1.
1 R(DLA) 09/02
61380 The claimants condition must be such that the constant presence of another person
is required to intervene, and restrain the claimant, to deal with unpredictable
behaviour. The restraint must be a regular occurrence. If supervision, or a structured
environment, short of physical restraint prevented the claimant from being
disruptive, or from being disruptive on a regular basis the test would not be
1 R(DLA) 07/02
Benjamin is disruptive at home whenever his mother leaves the room, or her
attention is diverted from him, or he does not get his own way. Whilst in the
structured environment of his school Benjamin displayed no behavioural problems.
The claim to the higher rate of the DLA mobility component fails on two counts. At
home it is the presence and active interest of his mother that is sufficient to prevent
disruptive behaviour. At school it is the structured environment and supervision that
prevents the disruptive behaviour."
The test is pretty strict, and you have to be able to fulfil all the parts.
If you read this guidance, and think that your DS qualifies, then you need to appeal.
Interestingly, it isn't how disruptive their behaviour to you as a family that counts, so he could spend 4 hours led on the pavement, and it would fail. But if at any time he would walk in front of a car, or lie down on the road, etc, that is more likely to suceed, because there would be danger to either himself or other road users.
Cerebra have a book you can send off for, or download, which helps you get through the form.
things is the DLA form is hard to fill in for 2 reasons IMO..
1)it focuses on everything negative about your DC.. and reminds you that what you consider 'normal' for a household probably isn't.
2) deciding which bits your doing requires more care than another cgild of your childs age.
if you have kept a diary at all it will help. if not, keep one for a few days, as that will help prompt you on the things that need more care.
if you have a friend with an NT child of the same age, ask them what they have to do care wise.
( I used DD as a baseline.. she is 4 years younger than ds2 and NT.. so if I had to help ds with something but didn't with dd.. then it went on the form.)
if you list the parts that your not sure of I'm sure we will all give you a hand
Thank you Arsenic and Chocoholic for posting links. Got dx for AS for DD in the summer and still haven't got around to claiming. Was not sure if I should.
Poulay - I found your post riveting as they say people with ASD are all different but your description of DS describes my DD (age 11) absolutely perfectly.
Deffently worth claiming, we get higher rate for dd2 (HFA with severe language delay and sleep problems), and middle rate for dd1 (Aspergers). Dd2's dla is due for renual in March so i have to fill the forms in again .
Hi my grandson is 4yrs and 9 months we are going to a tribunual this week to appeal for his HRM he was awarded HRC without question He remains non verbal even loosing the few words he had last year is still wearing nappies with no idea of toilet needs He attends a special nursery and after the summer will go to a school nearby for children with autism His nursery have had to redo countless risk asesments as he is very good at escaping and managing to get himself into very tight spaces at nusery he has i/i indoors and 2/1 when out even when he is in a major buggy He is non aggressive but is very unpredictable and will run towards traffic and will have to touch stationary or moving cars We cannot hold his hand because he covers both ears with his hands Im assuming to block out sounds Even going to shops with automatic doors is a nightmare he will just run straight into the road so he has to go in the buggy when we are out His peadiatrician is dumfounded he did not qualify and has written a letter to them to explain what autism is and how affected he is along with a learning disability which she asessed him as being at the level of an 18month old. Is it normal for a child of 5 to be in nappies night and day to be unable to play indoors or outdoors without risk of eating anything lying in the grass stones paper flowers etc despite us checking beforehand to be unable to use a spoon properly to feed himself to have to suffer the indignity of being pushed in a buggy despite being able to walk because his brain doesnt even recognise his own name !! This is the same DWP who award high rate mobility to drug and alchohol abusers So why do we have to scream and fight for the rights of innocent children Can someone give me an idea what they will ask we are so tired !
apply, what have you got to lose. ds is 5 and gets MRC, and no mobility, hes awaiting an assessment for autism , paed thinks he is autistic, he also has SLD. when the forms were originally completed, i was a bit naive and didnt understand much about it. but it seems as though he should have been getting some sort of mobility. so im getting it reviewed, as behaviour has went severly downhill, to the point where he's throwing himself on the ground and refusing to walk daily. have just got confirmation that his maclaren major is on the way
Attended the tribunual today and my daughter was questioned for 15mins about his behaviour I wasnt allowed to speak despite being the families only trusted relative that he can be safely left with ,being his nana (grandmother) a word he used to say but I havent heard for a long time and despite being a Registered Learning Disability Nurse of 20yrs I was only allowed to sit and say nothing GRRRR !! I really had to bite my tongue We were asked to leave .The clerk came to the waiting room to say the panel will make a decision today and post a letter to let us know what there decision was I was shocked We had waited 13 months and gathered our evidence The DWP hadnt contacted his peadiatrician Nursery or GP we know this because we asked them We sent all of there reports and when we didnt recieve a letter to confirm they had reached them we phoned and they said they hadnt so we sent them yet another copy of all 3 reports I arranged to change days off at work and spoke to CAB who gave me a ruling on a similair case but I wasnt even able to show them that ! so yet again we sit and wait for the postman I was under the impression we would be told the outcome at the tribunual Even if they refuse I wont let this go Im so angry that this innocent little soul will have to have someone to fight his battles for him I will be looking for a solicitor who specifically deals with childrens claims and am prepared to go to the Higher Tier Tribunual Sorry for the rant but Im SOOOOOOOO angry
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