DLA mobility and pain, do they still award for this?

[LadyMaryQuiteContrary]

Ds (13) has hypotonia which affects his feet, ankles, wrists and shoulders. He has insoles in his shoes which help a little but he can only walk for a few minutes before he's in pain and has to stop. He also falls over, usually down steps or into the road, and is overly anxious about being attacked (don't ask). As well as the hypotonia he also has a sensory processing disorder and becomes very upset if there's a sudden loud noise as he finds it very painful.

I applied for DLA for him a couple of years ago as I'm spending a small fortune getting him to school (mainly because I have to go with him). He was turned down because they said that he wasn't eligible as he 'can actually walk'. They turned the appeal down as well. I have to apply again but I'm not sure I should bother due to the fact that they keep turning us down. Have they made a mistake?

I've looked at that and have used it. I'm just worried they will turn us down, again. He needs encouragement just to get out of the house at the moment. It's easier for him to stay inside because his feet won't hurt if he's sitting down.

Thank you, it's good to know that you've managed to get it. Did you have to appeal?

The term is 'severe discomfort' and the question is something along the lines of 'how far can ds walk without 'severe discomfort'.

Severe discomfort is not the same as pain and, crucially, it doesn't have to occur immediately at the time of walking. So, for example, if you can walk 400m but then can't walk again for 3 days because you are so incredibly stiff, then it would be argued that you can't walk 400m, even if you can physically cover the distance. If you get severe discomfort after 30m, even if you can cover a distance of 400m, it is the 30m that counts.

If it is variable, the best thing to do is to write an accurate description of his mobility, stating how far he can walk, when he starts to experience discomfort, at what point he refuses to walk altogether and why, etc.

"He needs encouragement just to get out of the house at the moment."

You need to be careful how you phrase that for DLA. There is a clause in the rules that to qualify for HRM, the person must be able to take advantage of it. So, for example, if a person has extreme agoraphobia, they could be denied HRM because they can't leave the house to take advantage of it.

It's literally a few meters, lougle. It's never variable, always the same. Even when he's standing it's a few minutes. I've said he 'needs encouragement to leave the house because he knows that he will be in pain after he's started walking for more than a few minutes. The pain is caused by the hypotonia in his feet'. Do you think that's OK? It's 'severe discomfort' rather than pain then as he will often need to rest/take painkillers afterwards. If he's really overdone it (PE lessons) he will need a day off school the following day as he's exhausted.

I get HRM for me.

I'm fairly mobile in the house as I can stop a lot and have things to hold on to (like extra stair rails, still have to pause 3 times going upstairs!). Obviously I don't go up unless I have to - we moved house to get me a downstairs loo!!

Outside, on a good day, with my walking stick, I can get 5-6 m to a taxi and climb in, then at the other end get the few 10s of metres to get into work/shopping etc. I use shop mobility a lot and can't do a supermarket shop except in our teeny local coop without help (staff know me so help!).

I got my HRM and MRC on my consultants recommendation. You really have to "undersell" as I'm sure you know, but I was lucky notto be called for medical, probably as I have a rare but strictly defined neurological defect and I was a textbook case.

Even though you dont get the mobility for him, you might be able to access transport. My dd2 has a hip problem called Perthe's disease, and was walking far too much to get to the school bus. She was only allowed 15-20 mins on her feet each day which meant it was all taken up going to/from school. Nothing at home - I was carrying her upstairs age 5 (this was before I got sick).

We got in touch with our local council transport provider and explained. They were very obstructive. So I called her totally wonderful consultant and literally 20 mins later we had door-door taxi transport! I'd ask if they could back you up - we didn't have a blue badge for her or any DLA as her condition was month to month and they could never tell what would happen. But she got a school taxi, si I'd be inclined to apply and get all the medics behind you if you can!

My son 'can actually walk' for quite a distance, physically, but the supervision it requires is phenomenal. Think "particularly difficult toddler", except he's nearly as big as me. He gets dla for supervision for mobility, because he MUST have a lot of support near people, roads and animals, and if we are going to be walking next to a busy road, he must have one to one adult supervision, which means his six year old brother doesn't get supervised, which means we get a taxi at least part of the way.

In short, his physical ability to walk should have no impact whatsoever if he needs support to get anywhere at his age! He "should" be able to walk two miles to secondary school independently, if he can't do that he has a disability which is causing a mobility problem.

A taxi would be better for him as it's hit and miss whether he can get a seat on the bus. I usually ask if someone doesn't need theirs so he can sit down but he gets embarassed. I don't mind if he needs to see a doctor, we don't have anything to hide. I have letters from his paediatrician that I'm sending to confirm some of his problems, they don't say how long he can walk for though. The physio is helpful but has pretty much said not to bother to apply for this as they have changed the criteria and it's a nightmare to apply for.

Thank you

Thank you, colditz. The physio tried to assess him on the first visit but gave up after 10 minutes because he was in too much pain. He falls into the road as well, but the DLA didn't seem bothered about this.

I've posted it but added a few 'severe discomfort's first. Please wish us luck.

The difficulty with mobility is that there are three components to walking that they look at:

Speed of walking
Distance of walking
Manner of walking

So if someone can walk 50m but it takes them 10 minutes to do so, then they will be considered unable to walk, even id there is no discomfort.

I get low rate mobility and I am a adult with no physical issuess only anxiety so it can be done.

He does get very anxious when he's out and will really sob if there's a sudden loud noise (I wrote it down on the form). He also has a tendency to tell strangers off for swearing/smoking so he does need a lot of guidance when he's out. (I wrote this down on the form as well). He has come home by himself a couple of times as it's easier to get home then to get to school but I am a bag of nerves until he gets home and I have to make sure he has something to read and his phone. I wrote that he will walk into things because he doesn't realise that they are there (like dog poo and people), his speed is very slow, he can only walk 5 metres without pain or discomfort and he trips up. I really don't know what else I could add, it's hard to think when you see the same things every day, it's just 'normal' IYKWIM.

I have been filling in DLA form today for dd2, what a nightmare. I know what you mean about things seeming normal, but having to remember they are not for the form.

Dd2 cannot walk on her own without support, ie if I hold her hand she can walk a short way or if she uses her rollator she can move about very randomly, but she has never been able to walk on her own. Does this mean she cannot walk at all or is she virtually unable to walk??? Sorry to hijack.

I think that depends on how old Dd2 is. My son's 13 and he links arms with me when he walks because he stumbles. It is OK for a 2 year old though. I'm not sure to be honest.

Its not just about ability too walk. , have too take it slow filling these forms in
too quote....... need of assistance too guide or supervise on routs unfamiliar...... needs any attention,, guidance,supervision or watching over that they require must be be substantially greater than that required by chidren of the same age and without disabilities.....Unquote.
So in effect look at other aspects, may run off, needs assistance, will walk into the road. get lost in unenclosed open area's, dicomfort need too rest , etc etc

LalaSalama, I would think it's likely that what you describe is 'virtually unable to walk'.

I think I've covered it all. I received the form in November so it's taken me months to fill it in. It had a deadline on the front, which has been and gone.

Thanks all, my community nurse says I must put that she is unable to walk, because she can't do it alone. She is 11. We get higher rate mobility at the moment, but she has made quite a bit of progress lately. i think she may finally walk alone eventually!

Well done for finishing the form Lady Mary, got to plough on with it later after work. Just checked my form, it doesn't have a deadline, but current award expires in May, so got to get on with it.

I'm so glad your DD is making progress, lalaSalama. Remember though, that for DLA your DD will have to be walking quite well not to qualify for mobility at 11!

Good luck, Lala.

I hope there's a day when he can get around outside without me. He's just had new insoles which have helped a little and he has another physio assessment in a couple of weeks (he could only do a few minutes last time as he was in too much pain to continue). Onwards and upwards!