DLA 'days a week/times a day/minutes' and Autism

blue_monkey_2

I am filling the form out and I have left these blank as I do not know what to fill in.

I've been trying to keep a diary and have noticed that my son is supervised pretty much every waking minute and we are not able to leave him at night either because he has those sleep terrors, wets the bed, wanders the house, etc..

Eating - supervised all the time.
Toilet - supervised for that
Sleeping - supervised for that
Playing - supervised for that
Literally everything is supervised.

It really is quite depressing as it has crept up on us, I got sent 2 forms and am filling it out the 2nd time as I have had t make the writing smaller to fit everything in. I have always said that we do not let this affect our lives but it clearly does. Maybe I just never realised just how much.

What do I fill in on the sheets please. Shall I just put 'from 5am to 10pm' for the daytime supervision and then '10pm to 5am' for the night time supervision next to the times/minutes.

It's the supervision, can hardly put that into minutes as it is all day, every day so I wondered what other parents of Autistic children do for these boxes please.

24skins

blue_monkey wrote: »

I am filling the form out and I have left these blank as I do not know what to fill in.

I've been trying to keep a diary and have noticed that my son is supervised pretty much every waking minute and we are not able to leave him at night either because he has those sleep terrors, wets the bed, wanders the house, etc..

Eating - supervised all the time.
Toilet - supervised for that
Sleeping - supervised for that
Playing - supervised for that
Literally everything is supervised.

It really is quite depressing as it has crept up on us, I got sent 2 forms and am filling it out the 2nd time as I have had t make the writing smaller to fit everything in. I have always said that we do not let this affect our lives but it clearly does. Maybe I just never realised just how much.

What do I fill in on the sheets please. Shall I just put 'from 5am to 10pm' for the daytime supervision and then '10pm to 5am' for the night time supervision next to the times/minutes.

It's the supervision, can hardly put that into minutes as it is all day, every day so I wondered what other parents of Autistic children do for these boxes please.

I've put 'constantly' in the past and they've accepted that - for things like walking outside/playing/at activities etc it's the best description.

ps if you're running out of space on the forms you can continue on a blank piece of paper, just remember to mark very clearly the question & page number that you are answering.

blue_monkey_2

Thanks, I have got to the Mental Health bit and I cannot face that right now so I'll get back to it tomorrow. I did it once and have filled in the entire one page and wrote over the section at the bottom - there was so much to put down, I guess you never realise your child has that many problems.

I think I need a wind down before bed.

I never thought of putting 'constantly', thank you.

munchings-n-crunchings

I'm not sure if the DWP still use The Decision Makers Guide, but understanding and using the terms are really useful.

Sometimes, I just want to change the words I use, as I seem to use the same word many times over the claim pack, and from the DMG you can see that there can be other terms to use, with subtle differences.

I submitted my diary once, as I felt it was the best form of evidence that could be used. But, it's really not nice seeing everything in black and white, and sometimes I feel to an outsider, it could seem that there's not much to like about our children. It's the nature of these forms.

Here's the link to the guide, and you can click on all the links for more detail.
http://www.benefitsnow.co.uk/dmakers/default.asp

With my daughter's renewal, other than the claim pack, and 7 year old medical assessments, I didn't include anything extra and an indefinite award came back in 6 days, so a temporary relief from these forms.

I hope the guide can help a little,
Regards
Munchie

Karena_3

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx
Hi.
The NAS produce some very helpful information on filling in DLA forms for parents on the link above.I have a son with AS and found it very useful.Please do stick with the form filling.Most people do find it a chore but it is worth it if you manage to get an award in the end.
Karen.

Dippypud

24skins wrote: »

I've put 'constantly' in the past and they've accepted that - for things like walking outside/playing/at activities etc it's the best description.

ps if you're running out of space on the forms you can continue on a blank piece of paper, just remember to mark very clearly the question & page number that you are answering.

Don't forget to put on the top of the forms the relevant National Insurance Number, page and question number that the answer on the sheet refers to, and the number of the extra sheet that this is one of...

if that makes sense...:cool:

blue_monkey_2

Thanks for the advice. I did not do it today so will do it tomorrow and will go through the info.

I spent today trying to get a waterproof duvet cover - any ideas? I saw a PVC one online but can imagine that will get pretty sweaty. Ideally a terry toweling one that will absorb when he wees. I can't get the duvet done some days when he wets and this is not the best time of year for drying them (in the summer they go outside).

I have a waterproof terry sheet which is excellent (mind you, I bought a new one today and he freaked and would not sleep on it as he did not like the feel of it) but he still gets it on the duvet and it is driving me insane as it is cheaper to buy new ones than get them done locally in the launderette.

Ridiculous really.

24skins

Dippypud wrote: »

Don't forget to put on the top of the forms the relevant National Insurance Number, page and question number that the answer on the sheet refers to, and the number of the extra sheet that this is one of...

if that makes sense...:cool:

Indeed, you're quite right I would also recommend photocopying each page before sending it off, just in case any bits get lost by the DWP...

Re bed covers - we just use a horrible plastic one with a terry towelling on top, you can get absorbent fabric ones but they aren't as protective as the plastic (IMO).
Hope the forms aren't getting you down too much x

EDIT: I've just read back and realised you were asking about duvets and not sheets, d'oh! We just wash & tumble dry, will ask around and see if any friends have better solutions.

24skins

Found this on eBay, it's polypropylene which I'm sure is less plasticky than PVC, might be an option for you?

http://www.ebay.co.uk/itm/WATERPROOF-SINGLE-DUVET-Incontinence-Sufferers-NEW-/220902082664?pt=UK_Home_Garden_Bedroom_Bedding_PP&hash=item336eca4868#ht_1682wt_771

blue_monkey_2

24skins wrote: »

Found this on eBay, it's polypropylene which I'm sure is less plasticky than PVC, might be an option for you?

http://www.ebay.co.uk/itm/WATERPROOF-SINGLE-DUVET-Incontinence-Sufferers-NEW-/220902082664?pt=UK_Home_Garden_Bedroom_Bedding_PP&hash=item336eca4868#ht_1682wt_771

Wow, that is interesting. The new duvet I bought in The Range yesterday has a polypropylene cover. Does this mean it can just be wiped down? I wonder if I should try spilling something on it and finding out but that is a great price for that duvet - I think I might have to buy both the kids one.

Thanks for your help everyone. Having 10 minutes break for the continual talking about fish I have been subjected to this morning for the last 2 hours.....!!! :eek::eek::eek: And it all started out with a fish tank he won in a local pet shop..... they are busy discussing opening an aquarium now. :rotfl:

blue_monkey_2

24skins wrote: »

Indeed, you're quite right I would also recommend photocopying each page before sending it off, just in case any bits get lost by the DWP...

Re bed covers - we just use a horrible plastic one with a terry towelling on top, you can get absorbent fabric ones but they aren't as protective as the plastic (IMO).
Hope the forms aren't getting you down too much x

EDIT: I've just read back and realised you were asking about duvets and not sheets, d'oh! We just wash & tumble dry, will ask around and see if any friends have better solutions.

Thanks for the info, we have BRIILLIANT waterproof terry bed sheets, I have had them for 7 years, each child has one and they just soak everything in but they are cotton on the side. Until I bought some more yesterday I did not appreciate how good these ones were. However, I cannot remember where I got them from. I am taking one of my daughters bed and having that away so I have 2 for my son and will get her just a mattress protector as she has not needed it for a long, long time now.

Thanks everyone for the advice on this and the matress. We bought a cheap biorb yesterday so spent last night setting that up and tonight it is back to the forms!!