aspergers and dla

[notactuallyme]

do most people with aspergers get dla? we claimed, as it was suggested we did, and just been told over the phone its a no. we didn't use the cerebra guide, and i felt that if you had you be coached how to answer the form maybe that was 'cheating'. he has mild to modertae hypermobility and i could justify what we would need to pay extra for due to his aspergers. (so wasn't thinking, great, free money!)
is it just one of those conditions and needs that doesn't count for dla?

It isn't the condition that gets you the award. It is the extra care and supervision that your child needs. It is probable that if you didn't use the guide, you didn't explain enough how much extra you have to do for your child compared to an NT child of the same age.

no, sorry by condition i meant all the bits associated with it - kind of shorthand. is it worth appealing? its things like individual swimming lessons he needs - we spent about three years in groups and he can't swim. also sensory stuff - needs a lot of input there.

thanks leonie - i did it with dh who really wanted to underplay his difficulties. plus we didn't say yes to contacting professionals or include a statement - i just feel a bit awkward that people will think we just want money, iyswim? The lady on the phone said they would send a letter with reasons out and details of how to appeal. do i just wait til then?

The contacting professionals & including the school statement is about proving you aren't telling trying to commit fraud & was prob why you were rejected.

The benefits system is very instrusive, professionals dealing with SN kids, know that.

I got MRC & LRM without using the cerebra guide - I would have used it had I known it even existed when I made my son's application though! The people reading the forms skim through your effort glancing for buzzwords, & phrases & aren't medically qualified so may not even know what aspbergers is!

It's also about care needs compared to a child the same age - your son's school are actually in a better position to make that point than you are as they have access to 30 of his peers everyday for the comparison. Questions would be asked as to why you'd reject that opportunity to have his needs confirmed.

First of all, using the cerebra guide is not "coaching and therefore cheating." Have you READ the cerebra guide? Look at it. It doesn't say "say this and you'll get more money"... it points out specifically what needs you must consider for each particular section.

You can't "underplay" his difficulties and still give an accurate view of what support and assistance he needs. You must be completely honest and tell them everything. And I'm not sure why you wouldn't want them to be able to contact professionals, unless you've had some sort of problem with them. The statement is important in case there are things that aren't really covered in the main body of the form (as unbelievable as that may seem, as it's incredibly detailed).

It's uncomfortable, and we felt the same way, but we were advised when filling out the form to be brutally honest, even if you feel a bit like you're betraying your child by telling all the things he cannot do. Because in the long run it's helping him. The money helps - it has allowed us to purchase things for DS2 that we otherwise couldn't have afforded (laminator and sheets to make visual support aids throughout the house, extra clothing without tags, sensory toys and toys to try to stimulate the imagination, write on/wipe off board and markers and chalkboard to help with his coordination/fine motor control as he struggles dreadfully with his pencil grip, extra petrol costs as he will not walk many places, soft play fees, extra ear defenders, the list is massive....)

But as stated previously, DLA is assessed on NEED not DX. So it all depends on what needs he has that are over and above those of an NT child of the same age IYSWIM.

dh has found it hard to accept, so that's where the form filling was maybe subtler than should have been. I did try to focus on needs - and compared him to older/ younger siblings.

i think i felt that having received a diagnosis, and i am really grateful to school in assisting us in this, i didn't want to ask them to help us access money - as if we had just got to this point for financial reasons? i know its probably daft, its just really difficult to expose your life to people.

all the professionals are lovely, so maybe i should rethink asking them.

thanks for your responses - it sounds as though the professionals are asked to confirm stuff all the time then.

Yup to the professionals it really is standard practice.

I has major issues with the school my son attended when I applied for DLA, so asked them not to be contacted and used the statement instead. Everyone else was considered open season for the DLA investigators though as I didn't want to seem fraudulent iykwim. As well as the statement I included 5 expert medical reports.

It's up for renewal next year & this time I'll give full permission for access all areas - to be frank the DLA really do expect it.

notactuallyme It was our paed that suggested to us that we apply for DLA for DS2. She was quite happy to write a letter that we submitted with the application, plus she was happy to be contacted by them as well.

I turned in numerous supporting medical reports as well, along with a statement not only from myself, but also from my adult DD who spends a lot of time with us (she lives close by) and with DS2, and also has a DS who is roughly the same age. She wrote a very clear letter highlighting how different her DS and DS2 are in terms of care needs and comprehension, and used a number of examples of how DS2 need much more care and support than her NT DS.

DH found it hard to accept as well. In fact, many of the OH/DP/DH's on this board have gone through this, if you speak to the mums on the board. I suppose because we have to step in and deal with things, we don't have the luxury of waffling about it, we just have to accept it and move on.

ok, so i think i may appeal then, and say okay to contacting professionals. my mum was really cross i didn't get her to help as she used to process applications and knew what sort of phrasing to use.
just looked online, and 80% of cases get refused first time - is it worth appealing and emphasising his needs, and saying ok to professionals or is that not grounds.
i think i had issues with using a guide because when i looked online generally for info on dla there was a lot of 'we just decorated the house/ paid for a holiday/ etc' stuff which didn't seem to fit with meeting needs iyswim? i'm thinking more sensory stuff/ private lessons/ replacing clothers that get chewed.

triggles - thanks, just saw your post. i think you are right re: dhs - maybe i should have done the form alone.

sigh.. not sure where you looked online for that, but good grief.... I can guarantee you we have been slowly trying to make the house presentable (such as basic painting, carpeting, etc) for the entire 4 years we have been living here (council house, we could NEVER afford to buy a house) - none of which has been paid from DLA funds - and we're nowhere near finished. I have some days where I think we look like those houses on DIY SOS. We haven't been on holiday since before DS2 was born.

just argh at that comment in general.....

but its not directed at you. its the reason why i didn't feel comfortable looking at forums and stuff about claiming dla - it felt a bit uncomfortable. i can't control what other people write and how it comes across.
i am trying to explain how i felt - its about me, not you.

I understand that it's not about me.

I'm a bit unclear how using a guide would affect what you're using the DLA for, but that's neither here not there.

And families with children with SNs CAN go on holiday. And if it's to benefit the child, there's no reason they can't use it for that purpose. Or to redecorate if their house is unsafe or upsetting (sensory wise or whatever) for the child. If we had still been living at our previous house, I would have used the DLA to do some decorating - add a shower as DS2 wets the bed and needs to have shower every morning, replace the wallpaper in the one room as he hated it because the flowers for some reason looked like bugs to him and freaked him out, put different locks on the doors so they were all keyed entry, done some work in the rear garden so he could play more safely out there and put a gate on the side (as he is a runner with no sense of danger).

You have to think of it with a "mum of child with SNs" hat on, rather than "mum of NT child" hat on IYSWIM.

Hi NAM, firstly, DLA is needs based, not diagnosis based. Secondly, the cerebra guide doesn't 'coach' you, it just highlights all the things to consider when answering the questions on the form.

An example: "does your child have difficulty dressing?"

You could say 'no', because your child can functionally dress.

But, perhaps they have concentration difficulties which means that they need constant prompts? Perhaps they get anxious about buttons or zips.

That's just a small example, but what I'm saying is that with pervasive developmental conditions, one aspect of the condition often overlaps into lots of others. My DD, for example, has some difficulty with most things. Each on their own wouldn't be too difficult to deal with, but the combined effect is such that she needs a special school place.

Hi all. I get that there are indiirect benefits etc and I am certainly not benefit bashing. I was just explaining why we tried to do it alone. There's not one link; I googled it and some of the links were not relevant.
Thanks for the responses; I think we did the form without enough thought maybe. I really don't want to keep explaining what I meant - hopefully its clear.
Out now; day at a rainy park.

DLA also entitles you to look at other benefits too. TBH I thought we'd only get LRC but we got HRC cos of his nighttime supervision etc. At first they denied our reconsideration saying that he didn't need help with toileting etc. but it's plain to see purely on medication alone that he does. When it goes to a panel apparently they do get someone medically trained (at least that's what i was told) and that's what changed for us. Oh and by then we had dx.

I had an experienced lady come round from the money advice unit and checked my form before I sent it off. She picked up quite a few things that I 'took for granted' that they would know ( like the fact that ds needs constant supervision even as an older child for everything and needs a very high staff ratio in school and 1:1 on all outings - normal things for many sn children).
Until she came around I felt it might be cheating - but she just helped to highlight the difference between 'my normal'( in supporting ds) and what is truely normal!! Ds has ASD and LD so not AS but the principal is the same. Ds got HRcare LRmobility. I failed to change one of the bits on the mobilty (freudian slip I think) and the lady felt we should have got HRmob as ds was a runner/ sit down strike man(still is at 12) but I had an ingenious way of moving ds on his beloved scooter that kept him safe and allowed us to get about when essential!

If there is a money advice unit near you you may need to get on their waiting list in readyness as here it is many weeks.

Thanks - I shall provide evidence of medication then, feel better after everyones help, thank you.

Thabk you - I will send everything; I just sent the latest report. Thanks everybody, really appreciate it.

My son has HF asd/aspergers.

Anyhow, aspergers, as a dx, has stopped being used, hasn't it?

My son is 11 and has DLA hrc, and lrm. I receive Carers Allowance.

You have to demonstrate that what you provide/how he is, is above and belong what you'd expect to do/provide for a "normal" child of the same age.

we received an aspergers diagnsis from the paed recently. i think it is going, not sure when. i am going to see what the reasons are, and i have looked up how to appeal and / or ask for a reconsideration. i think my mistakes were:

getting dh to help
not agreeing to them contacting third parties
only sending dx letter, ot letter and salt letter, ieps, and not previous letters.

tbh i am surprised that it was refused (naive) as he is so different in terms of care to my others, and to other children - i think it has become habit to accomodate his needs, and so it is very difficult to see them as issues. i am going to write a wishlist and keep a diary for a cple of days i think, and also contact the school to ask for some kind of letter/ statement.