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Sorry - advice again please re mobility element of DLa for a 4yo

(37 Posts)
goldenretriever Fri 26-Jul-13 07:28:32

Hi
I was awarded middle rate personal care in May, but no mobility rate. I suspect even, ne should have got high rate personal care, tbh. He is definitely at least low rate as he can't go outside the door without having his hand held or he would just run. The letter said mobility would be reviewed when he turns 5 next May. Anyone know if I can do anything before that? TIA.

FanjoForTheMammaries Sat 27-Jul-13 08:58:24

DD is helpful in this respect and gets up most mornings at 130am grin

goldenretriever Sat 27-Jul-13 09:57:13

Mine is put to bed, but usually prats about in his (safe) bedroom until around half 9 unless he is really exhausted and sleeps through til around 8, sometimes needing to be woken up. Feeling lucky.

Grey24 Sat 27-Jul-13 18:34:56

Please could anyone tell me if they have been successful in getting mobility element of DLA for a child with ASD under 5?
As you say above, I've read the guidelines that it has to be for a physical reason of not being able to walk if they are under 5. I get the impression they don't regard ASD as physical even though of course it is neurological, not just behavioural.

(her issues are probably typical ASD ones eg to do with not understanding danger, refusal to walk, fear of motorbike noise, fear of people, needing to be carried regularly but not because she is being lazy etc). Any advice on whether it's worth applying - or definitely not to - would be gratefully received.

Trigglesx Sat 27-Jul-13 18:53:54

We got MRC and no mobility for DS1 when he was 4. They told me that running constantly into the roadway and being up most of the night was normal for a 4yo. hmm I was too stressed to fight it.

For his recent renewal at age 6, I was very clear about every difficulty he faced and all the care needed, and he was awarded HRC and LRM. Technically he would qualify for HRM, but I doubt that we would get it, even though he uses a wheelchair most of the time when we're out for any length of time - for his own safety and because he struggles to cope).

It never hurts to try - look through the Cerebra guide - the numbering is off (or at least it was when I did the recent renewal as the forms have recently changed), but it is very helpful.

ouryve Sat 27-Jul-13 20:05:41

We are extremely lucky that, once they've quit yelling at each other and conked out, they're usually sound sleepers.

The up at stupid o'clock tends to be only consistent for half the year - and not the half when DS2's DLA comes up for renewal! Like you, I only had the energy to ask for clarification, last time around, which was hardly worth the effort of typing the request for. I was dealing with my own health issues and DS1 was going through an extremely bad patch at school.

I kept a diary for a few weeks running up to his last renewal (really useful to refer to for examples, goldenretriever ) we were in the throes of training DS2 to walk more because I was really struggling to push his buggy - our pavements in the village are rough and I have 10 roads to cross, with hardly any drop kerbs - not only was he beginning to get heavy, he had a habit of leaning forward every time I needed to get back up the kerb, or leaning out sideways to watch the ground go by. We also live on a hill (though hills don't exist in DLA land. Not sure how you avoid them in and around Durham, mind). We left his buggy at home to go shopping, one morning. I took him into a shop and tried to look for something while he ran round and round my legs, while I was holding his reins. We quickly left the shop and he was blown if he was going back the way we came. Oh no. I ended up sitting on the ground with him, screaming, while I phoned for DH to come and carry him. I'm just glad we were indoors.

ouryve Sat 27-Jul-13 20:08:38

Oh - and we got told that waking up at stupid o'clock is normal for a 5 year old hmm

FanjoForTheMammaries Sat 27-Jul-13 21:04:08

We were told by neurologist that DD should have HRM from age 3 but didn't get it. We did get it from age 5.

But she has a more complex DX than just ASD so not sure if that helped.

goldenretriever Sat 27-Jul-13 21:23:15

Ouryve, I live near Durham too - waves!

PearlyWhites Sat 27-Jul-13 22:04:48

Grey no they have to be five to get low rate mob there are no exceptions

PearlyWhites Sat 27-Jul-13 22:06:28

And yes high rate mob is almost always for physical reasons occasionally for people with severe learning difficulties

zen1 Sat 27-Jul-13 22:48:07

DS (ASD) got HRM and MRC when he was 3 (almost 4). I wasn't going to bother filling out the mobility bit because I was sure it was a waste of time. However, nice lady from Mencap encouraged me to and I got lots of supporting statements from professionals about his lack of awareness of danger etc. However, I am not sure whether it was this or problems caused by his hypermobility which made them decide to award it. He trips and falls easily and at that time could not manage steps at all. In some sense, he is even more of a nightmare to take out now as he runs everywhere, thinks its funny if I tell him to stop and still has limited awareness of danger. I more or less confine myself to the house if I don't have to go out (I don't drive), but I fully expect that if they review the mobility element when he turns 5, they will reduce it or do away with it altogether as he is more stable on his feet than he was a year ago.

ouryve Sun 28-Jul-13 20:02:07

<waving back> grin

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