DLA mobility question...Advice needed please

[proudmum74]

I've just sent my DD renewal form (she's 31 mths). At the time of filling it in she wasn't walking w/o support, so I answered the mobility question as 'no' and explained later that she was walking a few steps with support. Since returning it she's taken her first few steps without support, although she's still very wobbly.

I think I should phone the DLA & let them know that DD is now walking a few steps (as they're in the process of reviewing her form), but DH thinks I shouldn't, he thinks this is toddling rather than walking & nowhere near what you would classify as walking in a child of her age.

What would you do? I don't want to mislead the DLA, but at the same time I don't want to cause unnecessary delays if they genuinely wouldn't class this as walking...Thanks

I may be wring (so I'll check in a minute) but I don't think they award the mobility to children under 3. Hold on.

I agree with DH, mobility depends on how they walk, how long they can walk and if it causes any pain. There may be others but based on that your DD fits the criteria x

they don't award till 3 year old, but she's only a few month off, they still may ask for you to fill that out then.

I'm probably wrong. Just call them and tell them that things are slightly different now.

OK, thanks - I'll wait until she's less wobbly before letting them know.

LadyMaryCreepyCrawley - i think you are right. I'd assumed they were asking us about mobility because she'll be 3 in 5 months and it can take that long to process the application.

I wouldn't, although she has took a few steps now, it could be a long time before she is walking the 90 metres briskly, plus kids with DS have a different gait to others and you don't know yet what that will mean for DD so it's all stuff to bear in mind. Remind me proud, does DD have a heart condition?

Whoops, cross posted. I think there was an option of saying walk a few steps, but took a long time, couldn't keep up with her peers and had a tendency to fall, so that's probably a better description than a flat 'no'

Thanks again!

No heart condition anymore - thankfully healed about a year ago, but does have hypermobility, so walking was always going to be challenging.

I've told them about that and how she wears piedros & needs us to do physio exercises every day

It's a standard form, unfortunately. My son can't walk 90 metres briskly. He can barely walk 5 metres without needing to stop because his feet hurt or falling over. They turned him down because 'he can actually walk!'
I really do hope you get yours.

Proud. If you took her to get proper shoes fitted, they would ask you to wait six weeks before they fitted them. This is the advice I was given for all four of mine. So she isn't really walking properly yet, she is just starting to walk as I bet you are still shadowing her and bracing yourself to catch her if she falls.
But well done DD, it's so lovely when they do start.

did you appeal Lady?

you should due to him stopping and the pain. Does he have a wheelchair? if so he should get mobility?

DS gets mobility and has had from 3yo due to not walking, then virtually unable to walk.

Yes, I appealed. They still said no. It was a joke really. I need to apply again but I've been putting it off. They didn't even contact his physio. He doesn't have a wheelchair, he has hypermobility syndrome which affects his ankles and wrists, his ankles are too weak so can only support him for a very short while.

Ridiculous situation LadyMary. bloody DLA.

I think you should ask his physio to refer you to wheelchair services as well as speaking to the physio about how long he walks before being i pain and needing a rest. Ask her to put it in writing to put in with the DLA/mobility so it's there for proof for them and if they need more evidence they can phone.

it's also about how you fill in the forms, seek advice there.......e.g I write reams and reams, however as soon as they see the type of heart condition he has it's an automatic tick box iyswim

The physio. Now that's another thread. He saw the NHS one once, then she cancelled as she had an accident. We heard nothing from them, so I called 3 months later to find that they had discharged him. He was seeing a private physio, but stopped last year as I couldn't afford it. A new paediatrician has referred him (we've moved house) to a new physio and an OT. I'm just waiting for the appointment. In the mean time, I'm escorting him to school (still) as he falls into the road. Do I wait for the new physio/OT appointment before applying yet again?

Sorry OP, I'm ranting now.

lol Lady, sorry you don't have to preach to me about appauling times/therapists/services in fact the only thing that does work for my DS is the DLA!!

If it needs renewing, do it now, don't wait. Contact your private physio to see if a letter is affordable as they should know enough without seeing them again. Explain to the DLA you are moving and must wait for services to follow, could all even go in your favour if the old physio is on board or even a good GP.

He hasn't seen the private physio for 18 months. The old paediatrician barely touched upon his mobility issues in her letters, the new one was far more thorough, and I'm waiting for a letter from her. It's crazy. This has gone on for years and they have been useless.

same here, nearly 12 year now, DS's life is a mess which impacts massively on family life obviously but fingers crossed one day someone might just be able to help him, hang in there and still fill out the form.

I'll wait for the paeds letter, then send it off with the form. They don't realise how hard things can be for some families.