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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To apply for dla for my child?

54 replies

Rainer · 29/07/2016 19:19

He has to regularly self catheterise, all be it independently but requirs reminding, especially with a lack of routine (as in now during the holidays) needs help to measure and record drinks and wee passed. We have to attend weekly soon to be monthly appointments. His equipment needs to be ordered regularly as well as medication.

Wwyd?

OP posts:
lady2016 · 29/07/2016 19:21

Apply but don't expect much

PickAChew · 29/07/2016 19:28

DLA is awarded on the basis of the difference in care needed between a child and their typical peers.

He would probably at least be eligible for lower rate care (which has a knock on effect on tax credits). You will need to be specific about what your role is in order to convince an assessor that it's something he needs your help with.
www.disabilityrightsuk.org/disability-living-allowance-dla

Fourarmsv2 · 29/07/2016 19:32

Apply for it. You'll probably be turned down but ask to be reconsidered.

The cerebra guide was really helpful when I filled the form in.

It's useful as a gateway to other benefits.

Original poster
Rainer · 29/07/2016 20:08

I don't think we meet the requirements for any other benefits. I'm not sure we meet them for this. No harm in trying?

OP posts:
lalalalyra · 29/07/2016 20:09

How old is he?

Deckthehallswithjammydodgers · 29/07/2016 20:13

Apply for it if you get turned down you haven't lost anything. It's worth a shot.

oaadc · 29/07/2016 20:16

Most family centres will be able to put you in touch with an advisor to help you fill out the form. It took me absolutely ages to fill it out for my son (who has autism). They can only say no.

Toffeewhirl · 29/07/2016 20:23

Definitely apply. I wish I'd applied earlier for my son, but I didn't think he'd be eligible (he has Aspergers). I recommend you use the Cerebra guide to help you.

Owllady · 29/07/2016 20:25

Yes apply
It's to cover extra costs and presumably you do with incontinence issues

ProcrastinatorGeneral · 29/07/2016 20:26

Like others, I had no idea we'd be eligible. There really is no harm in applying. Again, cerebra's guide is very comprehensive and I found it very informative when faced with such a huge form.

MrsNozzle · 29/07/2016 20:27

What PikaChew said. I would definitely apply. My DS (5) has type 1 diabetes, and cannot self-care or medicate at all so we get middle rate care component.

When filling in the form, (and they are long and arduous), think about the worst possible days in terms of his medical needs and care. So for instance, can his condition mean than he needs several changes of clothes? Does he require special care or supervision over what he eats or drinks? Does it hamper him in terms of what physical tasks he can do compared to another boy of his age without his condition?

Sorry - I know I keep using the word 'condition'. I do think that ppl with 'healthy' children don't necessarily understand the extra work and care required to look after a child with a life-long or life-altering medical issue. DLA is there for people and their children to help make their lives more tolerable, and to pay for all the surprising extras that can crop up. not just a perk to make up for 'bad luck'.

I'll get off my soap box. Blush I say go for it OP. BTW are their any charities or associated organisations that cover your child's condition (sorry) that could give you specific practical help on filling in the form? We had some good guidance from (iirc) JDRF.

MrsNozzle · 29/07/2016 20:28

sorry X posts with several others :-)

FetchezLaVache · 29/07/2016 20:30

Sorry to derail, but I'd just like to thank Toffeewhirl for sharing the Cerebra guide! I'm in the process of applying for my son, who's 6 and has ASD, and I'd never come across it before but I think it's going to be invaluable.

bostonkremekrazy · 29/07/2016 20:31

I applied recently for my child.
we give physio every 2 hours during the day
wears splints put on at bedtime and we take them off while they are asleep - so while the house is shutdown (midnight)
requires full assistance with feeding and drinking.

we were turned down.
apparently the criteria has really gone up, and DLA is now really hard to get.
we attend at least 1 medical appointment per week too - the appointment and medication ordering is not taken into account.
the only thing that is considered is how does this child differ to a child the same age - how many minutes/hours do the care needs take up?

(as our child is young the answer was the care needs are not much different)

40 odd pages and days to fill out.....grr. I'm not sure i'd bother if i were you to be honest.

123therearenomoreusernames · 29/07/2016 20:35

Boston you need to appeal or ask for it to be reconsidered. That sounds like a wrong decision.

MrsNozzle · 29/07/2016 20:35

Boston - that is bloody ridiculous - I would definitely try again. How old is your child?

John4703 · 29/07/2016 20:40

Apply, I applied for my son when he was at school. He is now 37 and the fact that he gets DLA is a big help when he has to deal with any government department. He works most of the time but often short term jobs and DLA helps a lot when dealing with the job centre, it means they give him loads of help to get a suitable job.

Flouncy · 29/07/2016 20:42

Boston have you phoned and asked for a mandatory reassessment?

You can verbally make the case that your childs needs are much higher than a typical child same age.

We were just turned down for DD, who is not severe but is undergoing ASD diagnosis.

DS1 got turned down when we first applied then got higher rate when i plucked up the courage to reapply two years later. However two years on his needs were markably much higher and differentiated from his peers.

seasidesally · 29/07/2016 20:43

is there a guide for PIP claims like Cerebra

thanks

bostonkremekrazy · 29/07/2016 20:47

dc is 18months.
reason given was because all small children need almost 24 hour supervision and care from their parents.
we asked for mandatory reconsideration and were turned down again.

now dc is on thickened fluids as well as needing full assistance for feeding and drinking we will apply again.

dc cannot walk or talk either, has a developmental delay, and currently functions around 6 months.

Original poster
Rainer · 29/07/2016 20:54

Boston that's awful. I hope that if nothing else you will be reapplying as soon as he's approaching three?Sad

My ds is 11. It's mostly fluid monitoring which we are struggling with and I'm now taking over. Most of the stuff is prompting him to do things. Buy it's stuff that other 11 year old son wouldn't need to be prompted with. There may be elements of ld associated.

OP posts:
unweavedrainbow · 29/07/2016 20:55

seasidesally yes, benefits and work www.benefitsandwork.co.uk/
You have to pay for it, but it's really worth it-the guide goes in to lots of detail about exactly how to fill in the form and what evidence to send. There are different guides for physical and mh conditions. They also have lots of free stuff on their website like the PIP criteria which are very useful. pip criteria
I'm also very fond of Fightback4justice www.fightback4justice.co.uk/ Again, you have to pay but they have a very active facebook group that gives out lots of advice for free.
There's also lots of people around on MN (like me!). Remember that the dwp is trying to prove that your "best day" is your normal so you have to proves that your "worst day" is. Don't underplay. I'm always around to give advice if you need it Smile

unweavedrainbow · 29/07/2016 20:59

Rainer at 11 there needs to be a "medical/developmental" reason why he still needs prompting. Does the ld have a diagnosis? The dwp's cut off for reasonable medical independence in the absence of cognitive delays is normally around 8 (which I think is a bit young really, but what do you know...).

PrunesforElla · 29/07/2016 21:05

Boston, definitely get an appeal because that sounds like much more than a 'normal' child of that age. My child has a condition which requires repeated attention at night and we eventually got dla. It took a year and it went to an appeal panel. She's only 20 months now and it got backdated to when she was about 6 months, when the needs increased.

OP, the appointments won't count which I think is silly. Since they're giving money I would think that extra expenses incurred would be part of the assessment. We live quite a way from my child's consultant and fortunately I drive but if I didn't, public transport would cost me about £15 a trip and a full day off work and at times we have to make weekly visits. I think dla should take that into account but it doesn't.

Original poster
Rainer · 29/07/2016 21:13

We all strongly suspect there is a problem rainbow. Today I've found that the measurements he should have been taking and recording since Tuesday he hasn't done and this has happened repeatedly tbh. Hence why I'm having to take over. I even asked him tonight as he was on his way for a pre bed wee just to leave the two measuring jugs out and he thought I meant 'in the morning ' and didn't follow the direct instruction. Life is pretty tricky but a lot of people seem to say their dc is similar so I don't know what to expect. He is a long way from independence.

OP posts: