Advanced search

Here are some suggested organisations that offer expert advice on SN.

Should I claim DLA for DS - hypermobility

(11 Posts)
FreakOfNature Fri 19-Jun-15 17:56:04

I'm wondering if anybody can offer some advice about DLA, I'm really not sure if DS would qualify.

He is 7, diagnosed with hypermobility at the age of 4. Due to family history we suspect he may have vascular EDS but having recently moved back to the UK from overseas we are now starting over again with waiting to see a paed for further testing.

DS cannot walk far - 10 - 20 minutes is his limit and he is super slow, however, in the garden he can run around, climb trees and appears pretty normal physically. It is his stamina that holds him back. He uses a Maclaren Major (given to us by wheelchair services when he was 4) if we go out anywhere. He still has a 2 hour sleep at least one day on the weekend. He wears quite chunky orthotics and buying shoes is almost impossible. I am calling the orthotist on Monday as we have now exhausted every possible shoe/boot I can find. That alone has cost a small fortune.

The physio in our new area has given him an exercise program which is incorporated into his school day, we maintain it in the holidays/weekends. We have had to buy an exercise ball, peanut ball and Tripp Trapp chair, plus cushion for him to sit on in school. We are looking for private swimming lessons as he can't manage with a group (tried for 2 years, he didn't progress out of stage 2!). He gets cold and tired very easily and needs one to one for safety more than anything. He has contractures in his fingers which he has previously worn splints for, his current orthotist wants to wait and watch to see how he progresses without them as, understandably, DS finds them a hinderance rather than a help. He gets quite a lot of discomfort and calpol is dished out at least twice a week. He is also bowel incontinent when fatigued, it is not unusual for him to poo in his sleep.

I do not see DS as 'disabled', disadvantaged, yes, definitely. But with careful planning from us and school, he manages pretty well. I'm just not sure if he qualifies for DLA and I feel a fraud as, without knowing him, you wouldn't know he needs a lot of extra help. What do you think?

Rainicorn Fri 19-Jun-15 17:58:22

If you have to do more for him that the average child his age, then I say apply. There is no harm in doing so, and having it opens up other services for him.

NoHaudinMaWheest Fri 19-Jun-15 20:06:29

The fact that his issues aren't obvious to those who don't know him is certainly not a barrier to applying for DLA. Many disabilities are largely invisible but very real. You are not a fraud because others can't see what you do. It is great that he manages but you have outlined how much help he needs to achieve that which means he does need the kind of support which DLA is designed to give.

MyVisionsComeFromSoup Sat 20-Jun-15 08:21:47

DD2 gets mid rate care/low rate mobility. If you met her, you'd wonder why. SHe's off to a uni open day today with a friend, she's doing a gold DofE expedition is a few weeks. She's doing brilliantly at school.

But, unless you watch very closely, you'd never notice that she's almost never on her own (and if she is, she's on her mobile talking to me). You don't see the after-school crashes as she's exhausted and naps for a couple of hours. You don't notice she never goes to parties/anything after 9pm. You might notice she takes tablets every so often, but you'd be unlikely to see that it's 8 per day, just to stay functioning. You wouldn't know about the risk assessments we've had to do to let her be allowed to do the expeditions. You don't notice I'm permanently attached to my phone in case of an emergency text from her or her friends. You might think she's wearing a pretty bracelet, but not see the Medic Alert emblem.

OP, just because you've incorporated what you need to do into your "normal", doesn't mean it's not DLA worthy. Apply, if they think your DS doesn't qualify, you won't get anything (after you've gone down the reconsideration and appeal route). It's a horrible horrible form though, having to think of your DCs worst days and write that down. We spend a lot of time making everything as OK as possible, and to have to flip that on its head and say, actually yes, there are problems and difficulties, and my DC isn't like little Johnny down the road because Johnny's mum doesn't need to do x or y which we do, it's heartbreaking. But, if you're entitled, you're entitled.

bitbap18 Sun 21-Jun-15 19:58:15

Agree with my visions. You wouldn't think much was different with my DD to look at her but she has Aspergers and is also hypermobile. We get mid rate care and low rate mobility and also have a blue badge. She's 7 and we have been awarded until she's 16. She requires a lot of extra care, attention etc from children of her age, in lots of different ways. Just because you don't really know any different, does not mean it's 'normal' for a child of that age. Apply for sure. If awarded, it opens so many doors to other things.

FreakOfNature Tue 23-Jun-15 19:09:22

Thanks for the responses, I have called to request the forms today. I suppose we have become used to the adjustments we naturally make to accommodate DS to make his life and ours easier. When I think about the difference between DS2 and DS1, who is 18 months older, those adjustments are very obvious. I feel like we are in a grey area, where he's not really 'disabled', but he certainly needs extra help throughout the day. I guess this is why there is different rates.

frazzledbutcalm Tue 23-Jun-15 20:24:52

bit .. just curious, how did you get a blue badge? I thought you had to get hrc or hrm to qualify.

bitbap18 Tue 23-Jun-15 20:33:34

To automatically qualify you do need certain things (as I understand it each council has their own criteria) and although we don't have the auto qualifying bits, we applied (and appealed as was turned down) and was awarded one due to DDs hypermobility. Been a huge help!

frazzledbutcalm Tue 23-Jun-15 21:31:31

That's great bit ... I have 3 with hypermobility and sensory processing disorder, 1 of them also has asd. I've never applied for a blue badge as we get mrc and lrm for each of them, gonna apply tomorrow - no harm in trying I guess smile
This might sound daft, how do you find the blue badge helps? Is it being able to park closer to things than you ordinarily could? Or do you find more benefits?

bitbap18 Tue 23-Jun-15 21:45:31

Parking closer (our nearest town has stupidly busy parking) more space for her to get in and out, knowing that I don't have to worry about where we will park. Also things like a quick escape when we have a bad day, hospital parking and the benefit of cheaper or free parking can't be ignored.

frazzledbutcalm Tue 23-Jun-15 22:07:51

Thanks bit I've said to dh in the past that it would be lovely to have a blue badge, he thinks I'm being stupid not/can't see the point. I wonder if he feels embarrassed almost, because it's a hidden disability. For me the benefits would definitely be being able to park closer to things.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now