DLA refused please please please help...

[WavesTheWhiteFlag]

My DS is 7 mths old, he has global developmental delay and hypotonia. We applied for DLA in november, and have eventually heard today from them that we dont qualify! They stated two reasons, one that he doesnt have a disability that means he cant get around (arghhhh he is a baby, he cant move!!!) and secondly that he doesnt have a disability that means he needs help with personal care (totally confused about that one!).

We only have till end of the month due to royal mail blunders and I dont know where to start.

Has anyone had the same reasons quoted with a baby? What do I put in an appeal letter?

Since novemeber he has been seen by SALT and now has to have physical assistance (finger under jaw) and daily excercises in relation to his eating and mouth movements. He has also been referred to portage.

It was so hard to do the DLA in the first place, given he was only 5 mths and all the questions seemed so irrelevant, now I dont even know where to begin. His paed and physio both think he should get it, but how do I make the DLA see that???

You need to show that he needs more care than another child of his age. It is very difficult to get mobility for a baby because all 7 months need carrying iyswim.

If you are having to do more with him than you would do with a typical 7 month old then yes you should be getting more for his care.

I have never appealed but others on here have and will be able to give advice. Also worth checking out whether there is someone locally who helps fill in DLA forms - often there's a rather long waiting list so it might not be much use, but worth asking. Your HV or GP might know.

moblity is often only awarded at 3 and then only if dc would meet the criteri for high rate.

have you wrote about what ds can not do compared to a nt 7 month old,

TBH I wasnt expecting the mobility pary(of course hes under 3) and he is expected (or hopes) to be moving eventually. But the way they worded is was more like if hes doesnt have probs with mobility he cant get DLA, which must be wrong as all babies need to be carried, pushed etc

We did send in all the letters, reports and a lovely one by his physio as well. Think I might take your suggestion and get his paed to write something.

He does need extra help, ok not a great deal compared to others, but more than his sister (whos ok) ever had. He has to have daily physio, help with learning to eat etc His problem is neurological but as yet doesnt have a diagnosis as such so there isnt a label to attach to him.

Just felt that they had disregared the fact thats hes only 7 mths and not 10 yrs old!

ok list it as like at 7 months dc can normally roll over . then list if dc can do

as get older things like dc can sit up ds camn not sit witgout support etc

dc can chew , ds still needs help learning this skill

very hard to see it in black and white what ds can not do i know.

But on the postive side it is good they have picked it upalready

Thanks phoneix. He has been seen by doc since birth, suspected SB, had mris etc all of which proved nothing.

I did put all the things you said. Where the mobilty sections were I wrote about not being able to roll/sit compared to another kid, has special chair etc etc, but for mobility outside I just put n/a under 6 mths as he cant move on his own anyway!
The personal care bit seems to relate to bodily functions. I cant see what I could put about that. The only thing I can think is that he has excessive drooling, but none of the docs will say if this is not normal or not. Guess all babies drool, esp at teething age.

Do you think I should just rewrite everything is bullet points in big bold writing?!?!?
Annoying thing is since nov he has started to roll just one way and just the once. Although according to milestones etc he his still way behind his peers. Defo cant sit or crawl. All due to the fantastic work of his physio though.

yep cut right to the chase and as ds gets older the gap does become more obvious at 7 months ds was just considerd lazy by profesionals fast forward now to dsay 4.7 it screams at you but does not mean your ds gap will widen

The best way to make an impact I found was to include a 'typical day diary'

For example
8.00 - Help ds to get. Spend ten minutes dressing him due to his inability to support his own head.
8.15 - physio exercises
8.30 - during breakfast spend 15 minutes completiting speech therapy exercises to assist ds to develop chewing skills

etc etc

Detail everything

They count minutes.

So if you are wiping up drool all day for the timing bit write ALL DAY 24 HOURS etc etc.

Don't try and time it, you might time it as 19 minutes of your day and they might only give you a tick at 20 minutes for example.

As another example they do not count you as being up at night unless you are up for 20 minutes. So if you do 10 X 10 minutes that will not count. Whereas one 30 minute would.

My whole form is full of '24 hours, all day every day' etc etc.

You can use the cerebra guide to help you www.cerebra.org.uk.

They can only award on the basis of what you write. So you need to be explicit.

For example:

"DS has GDD and hypotonia. This affects the muscles in his jaw/cheeks/tongue. He has more difficulty than a typical 7 month old to cope with solid food. I have to spend x minutes, x times per day doing this that and the other."

I've only just sent my first DLA form off so don't know whether we'll be awarded or not but my HV helped me complete mine and she was fab. I filled it out myself and she came and went through it showing me what type of things I needed to add, she said using words like severely and extremely at every opportunity help.

And to fill out the form to the worst of Ds's days.

You also need to repeat everything, if you've written something once you need to repeat it wherever it can possibly apply.

Agree with saintly and leonie about minutes (780 minutes for a 24 hrs btw )

They also look at how the condition affects the child not you so everything should be centred around ds.

Mobility rate, as I was told, cannot be awarded under 3 but you should still complete whole form and reapply at 3yrs

For the record I used to work for local council helping people fill in their benefit forms (not dla) and I really struggled with this!

Good Luck

Thanks for all the help. I did try and be as specific as poss re spending all day etc doing things with him, but obviously it didnt come across as a lot to them.

Another question - how is best to do an appeal? Send a letter, re-do the form or ring them. I havent got much time and would lvoe to know whats the best from your experience.

My DS was about 9/10 months when I applied so similarly the mobility/personal care stuff was irrelevant, and in several of the boxes I just put N/A. Elsewhere I just repeated myself over and over e.g. "All babies of this age require constant supervision, however DS requires constant one to one attention as he cannot sit up and cannot play with things as cannot hold them properly/transfer them from hand to hand", "Unlike other babies of his age, DS cannot sit unsupported therefore he needs constant support and assistance to enable him to play" "Unlike other babies of his age he cannot crawl/pull to stand/cruise furniture etc and therefore needs constant assistance to be able to explore his world like his peers." etc etc I didn't mention the things he could do at the time like rolling - that's not relevant its just the stuff they can't do that matters. And as someone said above you have to repeat it over and over again in every box - eg don't just assume that because you have said he can't sit up by himself in one box, they will draw the obvious conclusions that he needs more help with [x] in another box because he can't sit - you have to say it again. In all the stupid boxes about how many times does he need this/for how long I just put "Throughout the day" or "Every time he is eating" etc.

Sorry that's probably not helpful as you've probably done or heard all of this already and it seems like sometimes it is just luck of the draw whether you get it first time or have to appeal. Do you have Contact a Family near you (its a charity for families of disabled children - must have a website) - the lady from there was very helpful to me re the DLA form and I think that is one of the things they are there for so they may be able to advise re appealing.

Hi we went through the same thing, diagnosed at 9 months old, applied to DLA on the advice of the HV and received a letter saying that he didn't qualify. I remember at the time being so upset, having filled in these horrible forms. we had a Team around the child meeting and everyone laughted when we said we had been turned down. Our DS was receiving Portage, SALT and physio so he was definitely not the same as a child his age! We asked them to look at the decision again and we were awarded high rate in the end. Fast forward a few years on and our son is severely disabled and receives high rate mobility and high rate care. Don't give up, apparently 45% of their decisions are wrong!!!!!!!!!

My daughter knows of a v good website that helped her enormously. I will text her tomorrow to look here and post for you. Also a big swing factor is that DGS with CP is unable to position himself at all during the night so has to be moved manually by her to remain comfortable.

PS. She got the full amount at her first attempt. That must be a record.

try this
www.cerebra.org.uk/Resources/Cerebra/Parent%20Support/dla_guide_nov07.pdf

Thanks beammeupscotty, we had the cerebra guide but I guess we were the ones that day that werent gonna get it first time!
I rang the DLA and told them that DS has now seen SALT who say he cant feed properly and is on waiting list for portage and OT, as well as having to have splints fitted to his feet.
It was bad enough filling out the form and then getting a refusal, what made it worse was the way I found out. We never got a letter so I rang them and the lady just slipped it into the conversation, as if it didnt matter. It was like being read your exam results before you've opened the envelope!
Izzie I totally agree, my DS is nothing like a normal baby. In fact out of the 6 NCT babies hes by far the slowest at reaching his milestones etc. And of course, none of them see a physio or SALT. The whole thing is just ridiculous.
I'm not doing this just for the money (although it'd be nice), its the principle of it, hes entitled to it. I know hes not as disabled as many other kids, but hes not a typical baby either.
Ok rant over, got to wait another 6 weeks now so fingers crossed

Fingers crossed honey xxx