Disability Living Allowance.

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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??

I'm sorry but that is utter nonsense. My sister has been through this as her hubby has a mental impairment and gets lower mobility DLA because he needs help getting around "for a substantial part of the day but not frequently". It took at least two applications though as the folk at first contact tend not to understand.

My Dad gets DLA/Mobility and is able to walk further than a few steps. There was a guy who came and helped him fill in the forms and advised him on how to fill it in. Am not sure if he was from a charity, but can ask my Dad.

Thank you. I'm paying for him to see a physio, have been for a couple of years. It has helped as he's falling over less.The doctors here have been rubbish. He saw a paediatrician last year about the pain in his joints, she didn't know anything about hypermobility syndrome.

My son has cerebal palsy, therefore brain damage, for which we have the brain scan images.

He was refused because he wasnt disabled enough, despite have mobility issues and at the time couldnt self care. My cousins son was also refused it, despite also having CP and being far far worse than my son, with severe mobility, care and learning issues, he is now 20 with the mental age of a small child, is still in nappies etc. However on the other side of the family another cousins daughter got it awarded the same month, at middle rate, because she was diagnosed with MILD (I have seen the reports) ADHD.

God, it all seems crazy. I don't think they have a clue.

Sorry to repeat what's already been put but it is down to how you fill the form out. My son has autism & I got a lot of help from an amazing woman at our local children's centre who used to work for the DWP. She said 2 key phrases to use are "due to his condition" & "more so than any other child of his age". Again you have to repeat, repeat & repeat & write about the very worse days. I spent a good few weeks on it & got a decision really quickly but I did feel a bit shitty about it like I'd sold my son out in a weird way. It's a really horrible thing to have to fill out & I'd also recommend saving it on a computer so when it comes to a renewal you just have to copy and paste.

All the best, you have my heartfelt sympathies.

Thank you. Is it better to fill a new one in and start from scratch?

Op it is down to how you fill the form in and answer the questions. If you have a welfare rights advice place near you, get help with the appeal. He will need an hour a day if you break up the time, that can be 15 mins four times a day. He should also get the care component because he needs more supervision than a child of his age does when walking. Most children are refused at the time of their first application. Once he is awarded (he should be on middle rate mobility) you can claim carers allowance if you are not a full time student.

OP are you in time to appeal, you can do that over the telephone? That way the award wil be backdated.

They will look at your previous claim anyway and compare. They do this with renewals. It is always worth keeping a copy of the form that you send in.

Appealing would mean that if you are successful your claim will be backdated to the date you applied for the form, but I don't know how much new information you will be able to give.

If you feel that the original form did not contain everything you wanted to say or you feel it wasn't as detailed as you now feel it should be then a new claim is the way to go, but your claim will only be back dated to the date of the new claim.

There are place you can go for help, Welfare Rights, CAB or DIALUK.

Just for info- the mobilty componant is awarded for supervision as well as physical problems. This allows for a child with a SN to be awarded low mobility. In some areas this will make a difference when getting a free bus pass.

Don't listen, they refuse 80% of the first time claim, you can walk and receive DLA. Please appeal, they do this to everyone. Get your gp to pen a letter to them.

Good luck, its a very stressful process.

I received the decision this morning so still have time. It takes me an hour just to escort him to school! He walks slowly & has to stop so he's frequently late. I've resorted to taking him in a taxi, he has to walk around the school so it's unfair to make him walk more then necessary. They do allow him to use the lift to get up the stairs though which helps.

Put your appeal in. Do you have a disabled charity or welfare rights organisation near to you? He is eligible.

I don't know. The CAB is usually rammed and it's practically impossible to get an appointment. I need to appeal, the cab costs/physio bill is crippling me.

We are in the process of appealing DD's care award. Our request for a review has not altered their stance so we have indicated we wish to appeal. The paperwork back indicates this hearing will be Oct at the earliest.

One of the comments by the reviewer were to restrict fluids so DD didn't need help toileting at night.

You can't restrict a child's fluids!

They will wait for you to get an appointment from somewhere. Where i live there are lots of charities that help also. Is he involved with any disabled provision at all (after school, sport)? This should be getting treated through the NHS tbh. You need to push this for the future as it naturally opens doors to other things.

He doesn't receive anything other then insoles for his shoes. He was first of all sent to an orthopedic surgeon who was considering operating to rotate both of his femurs, despite me telling him that he was hypermobile. After a gait assessment the surgeon changed his mind and sent him to a NHS physio who just said 'Oh, he's bendy. You need to go back to the GP about the pain.' I went back to the GP who then sent him to a paediatrician who didn't know why he was in so much pain. I took him to a private physio who looked at him, recognised that he was hypermobile and is giving him weekly exercises to strengthen his ligaments/muscles. It's been 'slightly' stressful.

You need to detail absolutely everything. He really should be getting at least low mobility, and I would say middle care (high care involves having to have care in the day and night, and it sounds like he just needs it in the day. I think high mobility is quite hard to get, but I get low "just" for needing supervision in unfamiliar places and I have no physical problems that were part of the assessment, as he needs supervision all the time he should easily get it)

I know how much of a worry that it is to negociate the system without dealing with the everyday 'problems' that the disability brings. Is there now a way that you can use the findings of the private physio to have the plan changed by the GP?

I wuld get the DLA sorted first though, but if you can fit in the appointment the the GP for a rereferal, do so. He will be treated differently because he is getting older. The care changes as they go into the teenage years, i dont know why that is. My daughter hit 13 and suddenly i could have appointments with occupational and physio therapy that were previously denied. Obviously pain management changes after 12 because more meds become available.

There are also more 'action for disabled children' initiatives every so often, that seems to bump the system up.

OP-do you keep a daily diary, do not underestimate what his care needs actually are.

I thought I did detail everything, even how many times he falls over per day, how many times I needed to help him undress. I must have not put enough down.

I took him back to the GP for something unrelated last month and asked if there was anything else that could be done for him. She said no. I think he needs to see a rheumatologist, they know more about hypermobility syndrome. The NHS physio has only seen him once, they cancelled the next appointment because they were understaffed and I didn't hear from them again. I called to ask about when he'd receive an appointment to find they had taken him off their books. It's like a big joke.