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DLA - help please - I don't understand

(13 Posts)
mummyofbenjamin Thu 07-Jul-11 10:54:33

So tell me – this disability living allowance – how does that work? I have a son who is 3 years 9 months and has just been diagnosed with Autism. He is high functioning and I wouldn’t say it’s very severe in day to day terms and I never in a million years thought of claiming for money. But someone said I should try and see if I get it (or he gets it).

So I’ve had a quick look and where it says things like “needs help dressing washing and going to the toilet” – well he’s 3 and surely not all 3 year olds do that sort of thing. And waking in the night – don’t lots of 3 year olds do that anyway? I don’t understand how you’d distinguish a lot of things with any 3 year old compared to my son with autism. He isn’t toilet trained yet but can attempt to dress himself (not really very well).

He’s perfectly mobile so we definitely wouldn’t get mobility. Yes he’d probably walk into a road but wouldn’t a lot or most 3 year olds still do that?

I’m just a bit confused as to how you could claim for someone so young anyway.

MsParselmouth Thu 07-Jul-11 11:17:43

In terms of self care, its the length of extra time you would have to spend caring for your autistic child that makes a difference. Does he have 'routines' that neurotypical kids don't have that make it an endless job to get him into bed? Does he insist on going a certain way to school/playgroup? Does he need you to spend lots of extra time playing with him, learning to take turns, fighting you when you try to dress him, refusing to have teeth cleaned/bathing, hair washing, refusing to take medicines, keeping you awake much longer than NT kids, won't wear certain clothes, won't have his feet measured for new shoes, etc.

All of those things that make him autistic make him more difficult to manage than other children of the same age, and those are the things they are looking for on the DLA form. If you think about it, you are sure to find these things take so much longer to do with your autistic child, that's why he has a diagnosis.

And sure, he may be mobile physically, but I expect you can't take your eyes off him for a minute or he will run off (in front of traffic, potentially) and not come back, so the issue here with mobility is physical safety and stranger danger. This becomes more of an issue when they are out of the pushchair and you can't keep them confined.

Hope this helps.

MsParselmouth Thu 07-Jul-11 11:21:58

Oh, and also your having to mediate between the child and other people is something to consider. Do you have to talk for him so that others can understand his needs, and to help others to communicate with him in a way that he can understand? Also will become more of an issue as he goes out of the home and is expected to mix with others.

IndigoBell Thu 07-Jul-11 11:42:14

But you are right, you don't qualify for DLA just because your child has Autism.

You qualify if he needs a lot of extra help, that other kids his age wouldn't.

And it is harder to get for a 3 year old than for an older child, for the reasons you said.

pramsgalore4 Thu 07-Jul-11 11:43:10

think of your worst day with him and use that in answering the questions. think about things like can he follow instructions, does he stop when you tell him to, is he aware of danger, does he really understand the world around him, do you have to dress him does it take longer because he refuses, clean his teeth, is bathtime stressful as he is refusing, does he have challenging behaveour, when outside do you have to keep him closer to you for his safty as he is unpredictable and will run off or kick out or shove someone ie sibling. or just refuse to walk. dose he have problems with processing information so everything has to be shown to him for him to understand, you will be surprised that when you sit down and think about it what you class as normal for your son is not normal and infact you do alot more for him and alot more supervising him than other people with 3 year olds do. contact a family are really good at helping with dla forms and look on the nas website lots of info that will help, also really hard but don't put anything positive down and tell them everything you have to do, so if in the morning he hides and refuses to get dressed and it takes you ages to talk him round tell them this dont just say takes 5 mins to dress, include the time it takes to coax him out an persude him to get dressed. remember meal times, he may well be able to feed himself but do you have to keep reminding him to eat and tell him to sit back at the table include everything, every struggle you have etc and good luck. sorry about spelling

starfishmummy Thu 07-Jul-11 13:08:47

Can you find some "expert" help - a local support group, carers centre etc? We claimed for DS from 3 months old and I was a bit like you - all babies need help! But his community nurse filled the form in for us.
Prams has some good advice - keep a diary, start today, it will help a lot; and you will realise what you do.

cwtch4967 Thu 07-Jul-11 14:31:59

My son is 3 with ASD and learning dificulties - he gets Higher Rate Care. I found the Cerebra guide very helpful in filling in the form. http://www.cerebra.org.uk/English/getinformation/publications/Pages/DLAGuide.aspx
My claim was awarded within 2 weeks - I sent copies of all the statement advices and medical reports I had which I'm sure helped.

Mumof4Monsters Thu 07-Jul-11 20:59:52

mummyofbenjamin, my DD is 16 & on the Autistic Spectrum, she also has Developmental Delay & complex learning difficulties. She gets low level mobility because it is not safe for her to be out alone so dont write that part off. Good luck smile

Calally Thu 07-Jul-11 22:51:31

ds is 5, has been getting middle rate care since he was 4. he has suspected autism ( no diagnosis yet ). local citizens advice helped me fill in his forms. at the time he had issues with his mobility, but i didnt think it was enough to warrant mobility. looking back on it now, i should have filled it in anyway. im getting his reviewed at the moment, as his awareness has gone backwards in a big way. no sense of danger, would run into the road, cant follow directions, refuses to walk, has to be constantly prompted. you may aswell make an application, worst they can do is say no. if you can get some help filling in the forms, would probably help.

extremepie Fri 08-Jul-11 10:04:29

My DS is also 3 and I have just filled in the form for DLA, don't feel like you won't get it just because DS is higher functioning, apply anyway, that is for them to decide!

The way I tried to think of it was, yes, my DS does things which other 3 yr olds might do, but you have to focus on the things he does which another child the same age without autism wouldn't do, or things he won't do which another 3 yr old would do. In short, what makes him different from an 'average' 3 year old? I think it even says on the form its not really about how severe they are its about how their condition affects you, the rest of the family, and your everyday life. It sometimes helps to keep a diary of things that happen so you can use them as examples, also keep highlighting things in your form that are not 'normal' behaviour for a 3 yr old without autism.

For example, my DS is 3 and still in a pushchair because it is not safe for him to walk as he has no concept of danger and might unintentionally hurt himself. Another 3 year old might do this BUT, you could probably explain to a 3 year old 'you mustn't run into the road because you might get hurt' and they would probably understand - my DS doesn't so I can't do this. Or 'don't put stones in your mouth because they are dirty and you might choke' - again, my DS would not understand or listen to this so the only way to combat this is to physically stop him doing it.

Hope this is helpful in some way!

Suzza Sat 09-Jul-11 23:10:39

My son is HF and I am going to fill out a form for him next Tue, if anything it will pay for his obsessions (sprinklers) which i buy on a regular basis and also shoes as he only wears certain ones if any and anything that I need for him, to make his life easier and more bearable.
The form does look scary and I have a lady from a carers charity who is going to help me, thank god!
Have a look online and see if there is one in your area. I am in Spelthorne. If you are there let me know and I will pass the number on.
S.

r3dh3d Sun 10-Jul-11 10:12:00

Well, you are right that the entire form is assessed based on comparing the care your child needs with that of a typically-developing child of the same age. And at 3 it's tricky; both because a typical 3 year old needs a lot of care anyway, but also because at 3 you probably don't get that much chance to compare with other kids. There is a very useful table buried in the back of the DWP's own guide to their DLA assessors which says what they expect an NT child to be able to do at various ages. I've linked to it on previous DLA threads over the last few years but I can't lay hands on it right now. Try searching back through the threads but if you can't find it I'll look online again.

The other thing is to keep an eye on it - a DLA app takes a loooong time to fill in and your child will be gradually changing as you do it. So maybe start one now, if you're not finding that much difference, mothball it and get it out again in 6 months; you may find your answers have changed and of course the expectations of NT kids will have moved on in the meantime.

Top tip: Type all your answers in Word. You can now fill the thing 3 ways: send away for the form and handwrite it, submit PDF and online portal. The printed form has the advantage that they backdate payment to when you asked for the form. The online function gives you virtually no space for responses, don't use it. The PDF is OK but they change the format without notice. I tend to type it in word and then cut and paste into PDF at the last minute: also means I can add the word doc as an attachment where a 3cm by 10cm box needs to fit in a 3-page answer.

Claw3 Thu 14-Jul-11 16:18:12

Bumped for smug

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