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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

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.

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

<waving back> grin

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.

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

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

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

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

Ouryve, I live near Durham too - waves!

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.

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

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.

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.

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.

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.

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

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

lougle Sat 27-Jul-13 07:31:30

Being up at stupid o'clock can fulfill HRC criteria, even if the child sleeps through in one block until then.

Night time is defined as when the household shuts down until the household awakes. Nominally, this is 11pm until 7am, but it will vary for each household. If the claimant is awake in that time period and needs care and attention or supervision for a prolonged period, it doesn't matter if the carer can actually return to sleep afterwards, or if the claimant returns to sleep afterwards.

The example given in the decision makers' guide for adults is that of a farmer who has always arisen at 4am to milk the cows. He is now reliant on carers and requires supervision whilst awake. Although 4 am is his normal waking time, it is reasonable that the carers wouldn't expect to arise before 7 am, so he is deemed to be up for 3 hours in one block at night, which awards him HRC.

DD1 is erratic in her sleep. She has periods of sleeping through until the early hours and then waking, or being disturbed for much of the night. Regardless, she is up by 5 am each morning. if she wasn't, we wouldn't get up until 7 am, so she's up for 2 hours (at least) each night and gets HRC.

FanjoForTheMammaries Fri 26-Jul-13 22:24:23

Is a good point though, DD's lack of sleep doesn't affect her mobility, maybe mine.

Trigglesx Fri 26-Jul-13 22:23:42

DS1 is up frequently during the night and must be supervised until he is asleep again. Even with meds, he still wakes up. And is still incontinent during night so needs changing as well. I'd be in checking his breathing if he slept 8-9 hours straight. hmm

goldenretriever Fri 26-Jul-13 22:20:43

Thank you for responses. Ouryve does same thing. Think will wait til he is 5 in mine months time. Tis nice to feel less alone in the battle x

FanjoForTheMammaries Fri 26-Jul-13 22:18:49

That is strange.

DD is usually up 4 hours a night

ouryve Fri 26-Jul-13 22:16:52

Mine both get MRC and LRM. I'm lucky that they both sleep 8-9 hours, most nights, even though they get up stupidly early in winter, but it's just so bizarre that the way they sleep at night is linked with their mobility needs in this way.

Trigglesx Fri 26-Jul-13 21:42:02

oh, I see lougle thanks. I know literally nothing about the PIP stuff. I've just done DS1's renewal so it should be a couple years now before I need to deal with it again.

lougle Fri 26-Jul-13 21:18:46

The 50% car tax thingy is for people in receipt of 'standard mobility' (the LRM equivalent of DLA) element of Personal Independence Payments (the replacement for DLA).

FanjoForTheMammaries Fri 26-Jul-13 21:13:42

It really did. We knew Dd had severe long sight in one eye but thought she was OK with her glasses on.

Am half hoping it maybe explains some issues and can be helped and therefore aid her learning.

But definitely a shock.

Maybe 'lucky' is not right word, just that I know others should get HRM and it's like a lottery.

Trigglesx Fri 26-Jul-13 20:56:46

ouryve DS1 gets HRC and LRM, but technically (based on that above) easily qualifies for HRM. It's not the money as far as I'm concerned, but god the blue badge would be helpful. I sometimes dread taking him places due to the transport issues, especially to and from the car.

Trigglesx Fri 26-Jul-13 20:54:28

*you're... oooh I hate when I typo something stupid like that

Trigglesx Fri 26-Jul-13 20:54:09

Most likely, Fanjo. I don't know if I'd use the word lucky though. Sorry your having further worries - sounds like this came out of nowhere.

FanjoForTheMammaries Fri 26-Jul-13 20:48:30

We were told today DD needs support from Visual Impairment team (total shock to system) so maybe that contributes to her issues though

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