Disability Living Allowance.

[belledechocchipcookie]

My 12 year old can not walk more then a few yards before either falling over or needing to stop because he's in pain. He finds walking up stairs painful, he finds PE a nightmare because it's so painful and he can't fasten/undo buttons because his fingers become painful so he has to have help so that he can go to the toilet. According to the DWP he's not entitled to DLA because he can actually walk. AIBU to be pissed off with them for this? How disabled does a child have to be to get this??

Birdsgot don;t worry, cannot speak for otehrs but someone on here was reported for saying 'worst possible day' so for myself I am just being as specific as I can be to protect myself; no judgements intended.

But that's an average day. The worst day might be the one where he falls 10 times in the day and would fall more often if he could stand long enough - I'm making up examples because I don't know him. I wasn't suggesting it's played down just not done on how bad he can get at his very worst.

It isnt just about money in some areas being on DLA 'kicks in' friendship groups or sporting activities etc. I 'do' DLA forms as part of my work, disabled people getting what they are entitled to is a bit of a 'crusade' of mine. Services are being cut back and the extra income is so needed by many. All the 'aiming high' for disabled children rhetoric by the government just doesn't work in practice.

I wrote on the form that the school have made adjustments for him and I explained what the adjustments were.

He's my son, it's my job to help him unfasten his buttons. As he gets older though it's going to become degrading for him. I just need some help with his transport costs. Even at the weekends he needs a cab to get home because his ankles are painful. He's at the point where I struggle to get him out of the house, he'd rather stay in so he doesn't have to walk anywhere. He's only 12, far too young to be a hermit. We went to the park with my niece and nephew over easter and he couldn't keep up with them, they are 4 and 6.

I had the feeling that the OP was doing an excellent job in counter acting her DS's condition and had probably massively underplayed its effects on the form. That why advised keeping a diary. Also if you don't have a non disabled child to compare them to, you often don't realise the help that they need compared to the average child.

Birds are you a namechanger? just wondering as I am crap at picking up on peple here and would ahte not to recognise a mate IYSWIM.

I agree tthough; pre dx I worked for homestart as a manger and am now doing (very part time) an MA in Autism and absolutely agree with you; i too campiagn in that way and it's horrid. Am not in England and DLA seems to be considered irrelevant when being assessed by Social Service and for provision (mainly becuase a blanket no needs no criteria, sadly) though so her it is just the money.

'I had the feeling that the OP was doing an excellent job in counter acting her DS's condition and had probably massively underplayed its effects on the form. That why advised keeping a diary. Also if you don't have a non disabled child to compare them to, you often don't realise the help that they need compared to the average child.
'

So very true!

I know what you mean Birds, you have to complain about your/your child's illness and take everything you can get. Not one medical professional apart from the physio has done anything to help him though. They just look at him and say, 'oh, isn't he bendy?'

Peachy-no im not a name changer.

The changes that are happening within the benefit system means that for some they will only receive DLA because they cannot keep appoinments and apply for jobs so do not get JSA but don't meet the new tougher criteria for ESA (the old Incapacity Benefit) on leaving school. I am not suprised the CAB is booked up, there are so many people needing help with this ridiculous and unfair system.

In that case hello, haven;t met you on MN before the last few days (not a sign of a newbie, not here as much as I used to be) but nice to do so and the more disability savvy posters the better IMO

Things like hypermobility and dysprxia are ahrfd to get help for TAM; school treats ds3 as if he ahs dyspraxia, he obviously does indeed, but OT non existent so never been formally diagnosed,

She did think he had dyspraxia. He's disorganised, late for classes (because he walks slowly), scruffy (because he can't fasten his buttons), handwriting isn't too neat (his hands get tired and painful). They did some general tests on the computer at school and quickly changed their minds. It would help if there was a specialist. There's one at great ormond street but not here.

Where i live we are quite lucky, we have a large range of services because the city is considered 'disadvantaged'. There are also lots of organisations offering services such as form filling, i am volunteering in one at present, i do it as part of my paid work also. I was quite positive previously because there have been progress made in recent years towards disability but these cuts and a change in government have made me fearful. All that we can do is get involved were we can to promote change.

I find it rediculous that parents and disabled people have to jump through these hoops to get some support. Life's not easy as it is, this doesn't help. I can understand them wanting to sort those who can't from those who won't but there appears to be no logic in how they are administering the support.

Have the school done a full assessment? There are two many unanswered questions at present, he needs a reassessment. You need to push the GP for re-referals. In the area i live you can self refer to physio and occupational therapy. I wouldn't overly worry, you are going to be heading in the right direction at the right time.

they turned dd2 down first time, she has Autism, hypomobility, and sensory processing difficulties, still in nappies and wakes everyday between 3-5am. She also cant dress herself, has no sense of danger and cant wa;lk far without pain.
However, I asked them to reconsider and sent further information from her Paed, and they came back 6 weeks later with a yes.
Every penny of her DLA goes on her private specialist preschool, but im so glad they have made so much progress with her

ask for reconsideration and send as much info as you can.

No. It was an unofficial test that he passed with flying colours. If it had flagged something up they would have referred him to an OT. His physio didn't believe he was dyspraxic. Who do I ask the GP to refer him to? I tried to get him another NHS physio appointment, I was told this needed to go through the GP.

I can't see the sense in some of the families they are turning down. I'm so pleased you have it lisa

Our city is massively disadvanataged too but we get very little, we live outside it though in a village so I suspect it's our postcode and if we moved furthr in we'd be eligible for so much more- surestart, homestart, new children's centre all barred to us. Moving not an option though so just the way it is I guess. Back home there seemed to be more available but we didn;lt need it then of course .

It is ridiculous Belle. And the inute they get a snif you are coping you are left ot it. I had my carer's assessment 6 weeks ago and apart from some crap about home much he admires me (! whatever) there's nothing on offer. Despite 4 kids with various needs, 2 in Sn provisiona nd a Dh with MH problems (hardly surprising he has them, though I obviously can't afford to , someone has to get on with it)

(That sounds mean, love Dh to bits and it was a terrible childhood as much as the dx's that caused them but me who has to pick up the flack)

I know what you mean Peachy. I'm a single mother, if I'd have treated ds how his father has he'd have been taken into care years ago. You just get on with it.

The educational physchologist can do an assessment via the school. You need to have a straight talk to your GP, your DS is not getting the input he needs or should have. From what you say his mobility and pain are the first two that need addressing. You shouldn't have to pay privately for physio, either. After the referals have been made phone the clinics and make it known that you will accept a short notice appointment if they have a cancelation and give them your mobile number. You do often need to make a nuisance of yourself. You want a proper diagnosis.

It's a private school, I'd have to pay about £500 for an educational psych. I know it's hypermobility, I have it also. He's worse though.

Sorry haven't read all replies, not enough time.

I have hypermobility syndrome too, I get higher rate mobility and lower rate care though if you saw me pottering about the house you probably wouldn't notice anything wrong (if you saw me in the supermarket however you'd spot the rather heafty electric wheelchair which is a bit of a giveaway!).

Take your forms down the CAB and get them to fill them in for you, or alternatively there's a special book you can buy telling you exactly what to say, I think it costs about £15. You have to tick exactly the right boxes and use exactly the right wording or you don't get it, and frankly you need a PhD in the subject to know how to do it. I got refused when I filled the forms in but got granted DLA on second reconsideration with a supporting letter from the CAB.

I think they're refusing everyone at the moment 'cos they're broke and lots of people won't bother to persue it but from what you've said you're definitely entitled and you will get it you just need to say the right things. I know it's frustrating but stick with it, and get help, and remember that when you do get it the payments will be backdated to the beginning of your application so you'll get a nice hefty cheque in the post. But most importantly get expert (CAB) help (can't emphasize that point enough!)

Thank you Pseudo. The process must put so many people off applying.

I've called them and asked them to reconsider. Apparantly it doesn't matter if he can't walk outside without supervision/falling over/being in pain because he can actually walk

They are going to 'reconsider', I won't hold my breath.

As I said earlier, and as Pseudo said, go to the CAB. They have advisors who can fill out these forms with their eyes shut, and they have benefits specialists who can handle the appeal.
It is absolutely true that the wording is everything, and in fact, a lot of people write about their problems in the same way you have here about your DS's - which I don't think many people would think was necessary or appropriate on a form of this kind. I'm afraid it is.
If you rely on the DWP's 'reconsideration' process I wouldn't hold out much hope I'm afraid. CAB is absolutely your best bet.