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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Disability Living Allowance.

149 replies

belledechocchipcookie · 13/05/2011 12:11

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?? Angry

OP posts:
Birdsgottafly · 13/05/2011 14:06

It is how you estimate the time, they add the time up over the day.

You know that it has to be over an hour, that includes the time that you have to use guidance and supervision to prevent falls. It has to be more than twice aday. The term that theuy use is 'significantly' more than a child of the same age, so he certainly qualifies.

Fill the form in as though he is journeying to school without using a taxi because this may not be feesable for the future.

Birdsgottafly · 13/05/2011 14:10

It sounds as though your GP is at fault. You can phone careline for information about self referal to medical services. If you cannot self refer you can insist that the GP does. I would say that it sounds as though the GP is breaking guidelines by not refering after you ask. 'Under ECM disabled children should have services directed to them', this crosses into 2004 Children Act. It looks like you have been somewhat fobbed off because you have been willing to pay privately.

Birdsgottafly · 13/05/2011 14:12

Sorry for the typos.

Birdsgottafly · 13/05/2011 14:13

I have found that you have to chase up all departments. It saddens me because it must mean that those children whose parents carn't or don't slip through the net or receiving care.

Original poster
belledechocchipcookie · 13/05/2011 14:18

He was far worse before he started seeing the physio, he's now falling 1-2 times a day, at his worst he was falling every metre or so. Even when he holds my hand he stumbles. Poor lad Sad There's other GP's in the practice, the helpful one never has appointments.

Thank you for your help, I'm really grateful.

OP posts:
fivechildrenandit · 13/05/2011 14:19

I was so angry when I received a letter telling me that my son did not require any more care than a normal child of his age that I wrote a long theraputic rant telling them what our lives were like and sent it back to them in a rage. A few months later I received a letter saying that my appeal had been successful, I hadn't even deliberately appealled. There are people who work there who pay attention and listen so I would keep trying.

Birdsgottafly · 13/05/2011 14:26

When you fill in the form you pick how he is on his worse day because you cannot know when he is going to have a good day. He needs the extra financial help to ensure that he can get around.

cestlavielife · 13/05/2011 14:27

it is about how you fill in the forms.
appeal.

speak to and or post on forums of the hypermobility org
hypermobility.org/

and get a referral to hypermobnility clinic -see website above for advice and where they are

Original poster
belledechocchipcookie · 13/05/2011 14:28

A rant sound like a good plan. I am incredibly annoyed.

OP posts:
cory · 13/05/2011 14:29

belledechoc, we were also turned down for hypermobility. Basically, I think it's a condition that people don't understand and you really have to keep applying and spelling everything out.

Groovee · 13/05/2011 14:30

9 times out of 10 all applications tend to be refused. I know numerous people who have had to appeal or if it's a first time application asked for a reconsideration.

I've often wondered if it's because they want to see who can be bothered appealing. I was fortunate as I got it first time I applied.

Original poster
belledechocchipcookie · 13/05/2011 14:32

Every day is the same Birds. It's like living in groundhog day.

Thank you for the link cest, I've found a group in the next city. Smile

OP posts:
pramsgalore4 · 13/05/2011 14:35

phone contact a family they are brill, you have to word things right, i asked for my claim to be looked at again and sent in extra things like another report from teacher outlining the help he needs and a very long letter by me explaining everything and pointing out that a child of his age does not need this extra support and care, repeated myself over and over again, and i got a friend to right a letter for me and i sent that as well, i was awarded middle care and low mob with no end date with in 2 weeks of asking them to look at it again, dont give up, phone them, ask for a statement of reasons why you were turned down and for them to look at it again, it will be looked at again by a differant person

Original poster
belledechocchipcookie · 13/05/2011 14:40

You're right cory, even the paediatrician didn't have a clue.

I can ask his physio to write something, she's been seeing him weekly for 18 months and gave a comprehensive list of what he should and shouldn't be doing to his school.

Some of the posts on the forum are heartbreaking cest Sad

OP posts:
cestlavielife · 13/05/2011 15:43

for some reason i perceive that that forum tends towards negative/depressing - but take what you can from it without sinking too heavily - there is light at the end of the tunnel and you can live with hypermobility...

psisedriteoff · 13/05/2011 16:16

Ive just applied for DLA for my son, Im not expecting to much from it.Ive heard how hard it is to get it
I want it for extra tutoring for my son, he is 8 in August and can not spell his surname Sad , can not recognize basic words lik,e it, when, why, wave and the.

Ive just received a letter from the DLA saying they have contacted my DSs school for a report.

He has only just been referred to the SENCO [as his consultant does not diagnosis his conditions until a child is 7] so has not been assessed by the senco team yet

I have spoken to his teacher prior to this diagnosis [because consultant suggested DS had the condition when he was 3]. His teacher is the Special needs teacher in the school, she has made it very clear, she is not well educating with the condition and all she has been given about it, is 2 A4 sheets of information about it Sad

So am dreading what the school as going to report back to them

psisedriteoff · 13/05/2011 16:19

Sorry my grammar is crap, English is second language. Blush

jasminejo24 · 13/05/2011 16:32

this is insane my partner gets a small ammount of DLA because he has severe adhd and mild depression.

although this makes life harder for him its no where near as bad as it must be for you poor son. i really hope you get someting for apealing again.
have you tried for carers allowence? helping him go to the loo, dressing him, helping him walk, these are all things you should get carers allowance for. one of my friends gets that for caring for her partner who has terrible exsma. and he only needs help changing bandages and putting cream on his back.
if you live in england i stongly suggest a trip to birmingham childrens hospital, i was born with a cleft lip and went there many times. the seem to have the drive to make a childs life better in any way possible even if it seems impossible.
best of luck to you

Original poster
belledechocchipcookie · 13/05/2011 16:39

I don't really want to apply for carers allowance, I'd have no chance anyway judging by this. I just need some help to get him to school/out of the house. I'm trying to find a doctor who knows something about his condition, the only one I've found is in Great Ormond Street though.

Best of luck psis.

OP posts:
Birdsgottafly · 13/05/2011 18:00

You get carers allowance once DLA has been awarded at middle rate care. Op put your appeal in, as i advised, start to keep a daily diary, base it on his worse day, he is entitled to both mobility and care. Once it is awarded then look into other benefits or help.

Original poster
belledechocchipcookie · 13/05/2011 18:02

I'll give them a call on Monday. A diary should help, as you say, you don't realise just how much you do for them.

OP posts:
WhatsWrongWithYou · 13/05/2011 18:06

Have you contacted CAB? Pardon me if it's already been suggested, haven't read the whole thread.
Other posters are right, it does very much depend on what you add to the form as extra comments.
CAB will have advisors specifically trained in filling the form in, in particular where children are concerned.
Ask for an appointment with a specialist advisor asap.

Original poster
belledechocchipcookie · 13/05/2011 18:11

No, they are rushed off their feet here and I have very little chance to get an appointment.

OP posts:
Birdsgottafly · 13/05/2011 18:15

Is there no association for the disabled type charities or other welfare rights? Tbh if you do the diary based on his worse day you shouldnt have a problem. You may be forgetting about the supervision or guidance part because you are putting him in a taxi for school but write it as though he had to walk. The same with any doctors appointments, lesuire acctivities etc.