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??

Also remember the physical pressure that the pain he is in puts on his overall health and mood.

I have to take him everywhere. He's fallen whilst getting out of the taxi a few times, his ankles give way. I can see them flop when he's been walking for longer then a few minutes. We use the train to get to school, he falls on the steps and there's just no way he'll be able to get to school without someone there. I don't know of any disability charities etc here, I've just got on with things. He's now showing signs of IBS and I've had to cut wheat out of his diet. He can't help in the kitchen, he'll end up cutting himself. Every time I've asked for help for him I've hit a brick wall.

appeal appeal appeal and dont give up EVER!!!! seriously do appeal as many times as you need to as when dwp finally see the light and give u what u are entitled to they will have to backdate it to when you claim started anyway lol x

It's a crazy system. I'm sure I ticked the box saying I was happy for him to see a DWP doctor.

You have struggled on alone for to long. You need to insist that the GP refers you to the clinics that you want him to be seen in.

It looks like you have underestimated on the DLA form. Appeal. Has the school not been of any help? There needs to be a plan for him moving up to secondary school. They won't be as flexable over PE unless you are communicating with them but they will be able to get other services involved such as transport, if you ever needed it.

His school have been great. He's allowed to use the lift so he doesn't have to climb the stairs and he's been given 2 sets of text books so he doesn't have to carry them all to and from school (or rather, I don't have to carry them to and from school). They are being very flexible about PE, it's just transport that's the problem. I'm paying £100 a week for him to get to school & home, most of this cost is because I have to go with him.

I need to take him back to the GP about the wheat allergy. Gluten free bread is £2 for 4 rolls!

It doesn't matter if CAB are rushed off their feet, you have as much right to help as anyone else. You can drop in for an initial meeting, then they'll make a follow-up for filling in the form.
The CAB have to follow guidelines which includes meeting demand. Don't let anyone turn you away.

Sorry not for filling in the form, for assembling your appeal.

I'll pop in and see if I can make an appointment.

The education should be providing transport and will do so if you want it when he enters senior school. The school should have pushed for this. You should be getting carers allowance and especially if you accompany him to school. Push for the referals from the GP and don't take no for an answer. He may need an individual education plan (IEP) in place in the future.

It's not the closest school. There's a school bus which leaves from the other side of the city at 07:10. It's easier to take him myself and it takes less time. Is a rheumatology appointment right??

Well as everyone else says appeal; ds3 (severe asd) was refused DLA on first applicationa nd awarded HR when we asked them to look at it again (care, not mobility though he now gets LR). It's a common theory in the SN world that the DWP refuse half of all applications at random; estimates are that 40% of those who fulfil the criteria don;t get it.

It's crazy peachy. They wrote to say they had written to his GP but the physio has heard nothing from them. She's seen him far more and knows more about his problems then the GP.

They do that, sadly.

If I can read the forms for you- given we've been chatting on here for many years now- do holler. Used to do welfare forms for clients in old job and sadly now know sn system like back of my hand.

Have you spoken to your LEA? You may be able to get them to fund a cab. Ask the school if they know who can help you with it.

I am going to go against a lot of posters and say DON'T give details of the worst day. They are asking you for an average day and you sign to say that the information is accurate. If you are caught you could be done for fraud. If you have a doctor who understands the condition look at your case he will know you've done worst day.

Same as the others though I will say keep going back, don't let them put you off. Bit hypercritical really as I've not reapplied since it ran out because I can't face the forms

I gave them details of the average day, every day he's the same but he may fall over a little more on a bad day. The GP's don't know a lot about hypermobility. They should have spoken to his physio.

Thank you Peachy, that would be really great.

I doa gree about worst day as that technically could be once every six months and good teh rest of the time

But equally don;t hide the worst parts either. It's possible to put 'he regualrly needs me to carry him into the bath screaming' when it isn;t every day but is significant IYSWIM- we do this with ds1 at least once a fortnight (probably the only bath he gets atm becuase of his hatred of washing and not going to improve at 11 methinks).

Draw as honest but realist a picture as you can and avoid downplaying anyhting. Keep diaries and make sure that you comapre with a child fo equivalent age at every step- so with ds3 I might out 'wheras most 7 year olds can dress themselves, he needs help with buttons, to have his hgair brushed, teeth cleaned and a wash. Without this help he is unable to complete the task due to both dexterity and attention'.

Never lie, but make it absolutely clear what his needs are for goodness sake don;t so that thing some people do where they write 'sometimes he can get his tea but I have to most days' when they mean once he buttered two slices of bread but for every other day in the last 13 years he has had to be fed (random example) or they oput 'of course although he beats me half senseless hes' lovely really and i don't mind'. Yes it's hard talking about your chidlren in negatives so what i do is put a piece of paper alongside and for every negative on the form, a positive goes on the sheet (and I check 23 times minimum it hasn;t been posted with the DLA form LMAO).

Look on it as painting a comprehensive picture of his needs. If he can (again random) feed himself but only will if it's chips and oterwise you ahve to stand tehre for hours coaxing, say that. Say that every evening you have to allocate three hours for dinner supervision becuase although it might not be needed, it usually is.

[email protected] is my sn/ potential work mail addy.

Holler any time you need.

The problem that the OP has is that she is already paying for taxis, so this gives an untrue picture of the extent of her sons problems. When i suggest giving the details of a bad day i mean in terms of him having to walk. This is not commiting fraud. I also suggested keeping a diary to balance it out. No parent should have to pay for a taxi to take their child to school. Transport is available via either the LA or EA. The problem has been that the OP pays privately for physio, she needs to get the GP to make the referals then the system will kick in. I take it that she hasn't asked the school for any further help. Some people do not like the intrusion if they have the means to cover expenses.

I didn't put 'compared with other children his age...' at all. I thought it was common sense. This could have been my downfall. He can't undo buttons so will come down the stairs without trousers once he gets home. Nice!

The school help birds, he was struggling to get up the stairs/carry his bag/get around the school and he was coming home tired, upset and in pain. They've made adjustments for him.

So he has an IEP? and they consider him a disabled child? Does he move to senior school in september?

Oh common dosn;t come into it! Spell it out, every word.

Birds I see what you mean there; it's an issue isn't it? When I fill in the forms I am well aware that if was not about (and I could nto be if we lost Carers whcih is loinked to DLA) they would be capable of far less- it's take 11 years of battling to get this far along the road (haven't had CA all of that before I get benefit bashed! coming up 3 years I think with one more expected).

Without DLA we couldn;t separate the boys for their own safety; we couldn;t get to appointments; we couldn't have given them therapies. but now having done those could stop us being able to carry them on which would set them right back.....

Bloody hard.

WRT to transport look at the IPSEA website. usually they will pay for transport to closest appropriate (a word that causes many a minefield!) school but after that you may be asked to cover all or some; here we could choose any school fundedas we didn't have a catchment SN provision school (because they were going to build one here and then ran out of cash).

It's also deeply personal how much you ask for; 2 of mine get DLA and ds4 will clearly be entitled post dx (ds2 probably would in fairness, dyspraxia and some ADHD, though lowest rate). I have at this point chosen only to ask for the two boys who attend SNU as we can cope without the rest thought that might change what with ATOS and other things. At this point though we wouldn;t ask for more than 2 claims as we can manage on that without (and this is crucial) the boy's being at all adversely affected.

I would like to clarify 'the worse day' to other posters. You said he can fall up to twice a day so the suggestion that it is fraud is wrong because it certainly doesn't happen every six months or so. Also if the school are making adjustments then that shows that he is struggling compared to a child of a similar age.

He's already in senior school, he's 12. He doesn't have an IEP, they have just made adjustments for him. His personal tutor approached me in his first week and said that she thought something wasn't right. I'd already passed info to the school nurse and head of PE regarding his hypermobility and they have been very supportive.