DLA rant

[tomkat]

I applied for DLA several months ago for dd, and various things have held up their decision.

I rang them on Friday to tell them that dd had been given a Major buggy from wheelchair services, and the guy on the other end of the phone went quiet. He then told me that they had already decided that dd wasn't going to get DLA, and put me through to someone else who read out the medical evidence etc. and I can see why she didn't get it!

The report was a load of rubbish. They said that her Piedro boots helped her to walk as well as any other child (so THAT'S why she was offered a proper wheelchair rather than a Major buggy then? Also, the boots only help her ankles and NOT her knees and hips that are also extremely hypermobile, prone to dislocate and are unstable because of her condition).

They made out that her heart problems were minor and insignificant. (So THAT's why her lips turn blue and she is too exhausted to walk or even go to nursery a lot of the time?)

They even argued that dd didn't have eczema! I had only put this down in the "other medical problems" bit, but as dd was diagnosed with eczema as a baby, and we have got prescribed creams here from a very recent flare-up... hmmm.

Her condition isn't as severe as some, but I thought she would at least be entitled to lower/middle rate care, and lower rate mobility too from the criteria I've seen. They based their decision on reports from people that barely see her, because the consultants didn't bother to reply.

I know this topic has probably been covered several times before, but I wondered if anyone else's claim has been rejected recently, and whether anyone has got any advice for me? I am going to appeal...

S xx

grrrr just wrote a load and didnt realise i werent signed in so lost it all! typical, have to try and remember what i said now lol, ok, ds4 has hypermobility, with flat feet or some such posh word for that, with gdd, he was awarded mid rate dla. tbh i dont know if its true cos i cant see it but i was told that the awards were computer generated, makes sense though cos there doesnt seem to be any pattern with their awards at all. only advice i was given really is always state the worst case scenario, just because your dd doesnt do something doesnt mean she wont, i.e my ds3 would quite happily walk off with anyone who would take him, luckily its not a problem where we live but i know he could.
good luck with appeal hun, it could take some time though, my friends did, but she got a nice surprise when they did get it sorted. xx

I dont no how old your daughter is, but my brother was told he couldnt get mobility side of dla for his daughter before she turned 5, this being because up until this age they need help with getting around anyway, she too had a major buggy + boots. We recently were recently turned down for my step son, he is 15 and has spina bifida, they turned him down because he occasionally goes out with friends + the other reason was if he soils himself (which he occasionally does) he is old enough to clean himself so he does not need the care.

Good luck with appeal - I do no at times decisions are overturned

APPEAL APPEAL APPEAL.
we did this with dd.
they reconsidered and they gave us high rate and high rate mobility, dd has hemiplegia and asthma,eczema,speech and language delay.
im sure the fact that you have a major buggy will count, write in and tell them this.

HTH

unless things have changed you don't have to appeal just yet, you can ask them to "look again" that means that they pass the info onto someone else and they may give a different answer.
we did this with our twin girls (ASD) who were turned down for everything, then went on to get high rate care, one DD gets high mobility other one gets low mobility.
if they do "look again" with the same outcome then you can appeal.

Go to appeal!!!! I did

It is most upesetting but you know what WE WON!!!!!!

Got high rate care and mobility till 2010 dt2 is 3

Also had to go to appeal too for DT1 who has behavioural issues got awarded middle rate care but only for a yr got the whole saga to go through again by january

tomkat - you must appeal. We get DLA for dd (heart disease). We got support from Heartline - call their Helpline. Also theres a good guidehere to appeals. We were truned down but got mid-rate at appeal.

Thank you all for your replies.

I was so that I forgot to say that dd is 4, but starts school in Sept. I didn't know if a successful claim for DLA might help her mainstream school to get any extra bits & bobs that she will need.

Dd is very hypermobile in every joint (the joy of having a connective tissue disorder!) but it's the leg joints that cause her the most grief. Her arms and legs are much longer than average. She is easily the height of a 6 year old, and is growing fast. She can walk, but it hurts her a lot and she gets worn out very quickly. We were using a normal baby buggy before she got the bigger one.
She is quite used to "popping" slightly dislocated joints back in all by herself, much to the horror of any adult that sees her do this!

She has got an enlarged aorta, and a slight heart murmur that may be caused by a floppy heart valve. She is taking beta blockers to reduce the strain on her heart, but her resting heart rate is still twice as fast as her brother's, who is just a year older. The Dr's say that because her heart is just beating too fast but isn't in an abnormal rhythm that they can't do any more to help her at the moment. No wonder she gets so tired .

The other thing that affects her is her bladder. She is more prone to water infections because her bladder is more stretchy than in other people, so urine hangs around a lot longer. She would quite happily go for a wee once or twice a day if I didn't encourage her to go more often.

I put all of this on the form, or (in the case of the Major buggy) rang them to tell them about it. I feel like they have read NONE of it.

S xx

as others have said, ask them to reconsider.
DS2 was turned down & I asked them to reconsider & included a daily diary,comparing ds2 to an "average" child of similar age.
They changed their mind & he get high mobility middle care.
Only till his 5th b'day when I guess they'll try to drop mobility.
Good luck

It just gets better

I've now seen copies of the medical reports from dd's G.P. and a physio.

The DWP approached the physio that dd saw for her clicky hips when she was a couple of months old. He couldn't give them any information, as it's been so long since he saw dd. WHY didn't they approach the one she has been seeing recently that referred her to wheelchair services?!

The G.P. report was very vague, but he did say that dd hasn't got ASTHMA because the DWP had printed it on the form, saying that I'd said she'd got it... think they meant eczema

On the reports I've seen, I wouldn't have given dd DLA!