think i may have made a mistake DLA

[trace2]

my ds was awarded hisghist care and no moblity iv rang them and asked them to look at it again regarding the moblity well she shes it may go down in care if they do, wish i hadnt asked them now but ds is a nightmare near roads infact even in car parks due to not being aware. what ihave i done? should i have left it alone? just didnt seam right if you know what i mean.

Hi Trace2

Perhaps there just trying to frighten you.
I have a similar predicament, ds (asd) has middle care but as he is under 5 doesnt get the mobility (I feel this is wrong) as the paed is almost certain he has dyspraxia, he also has probs with his feet and needs piedro boots and arches. So same dilema, do we keep as we are, or appeal and risk losing what we have.

Do you have any reports that back up that he has no sense of fear etc.

Remind me again trace2 how old is your ds, could it be that he is under 5?

Its so wrong that they said this to you, on so many levels.

Ummm...I did this and they took it all away. But then did it again and they moved it up. Did it again and then they moved it up. Tis very unpredictable!

SUPPOSED to be (for ASd type things):

high care - needs supervision/ care lots of the day and 3 x 20 minutes a night (or something similar - must have night needs though)

middle care - needs care over and above another child their age all day but no significant night needs

low care - some needs sometimes!

high mobility - severe mental impairment which is caused by arrested or incomplete development of the brain (which autism is accepted as now) which causes severe impairment of intelligence and social functioning and is accompanied by dangerous/ reckless/ violent behaviour.

low mobility - needs extra supervision and guidance.

So I would have thought you were entitled to low mobility...but then you thought you weren't entitled to the high care award and were v surprised by it, so maybe they'll knock that down and add the low mobility? Who can tell, with DLA!

hes 6years and hes aspergers and maybe dspraxa, and aslo looking in to adha, we see is pead next week ill ask if she can give us a letter, its her letter what helped us gey DLA high care they told me on phone. iv givin some examples ike when a lorry goes past if its noisy, and if we change routine he flaps runs in road hes a danger to him self and others. now i wished i left it alone

givemesleeporgivemechocolate was surprized tbh but hes never slept when he does hes up every 2 to 3 hours and wont go back to sleep hes so much energy, we been given melotone for his sleep but it hasnt worked with him or should i say make him worse. he now wakes but sleepy which is worse like last week tmi coming here got up as per usual in night stood had a wee then pooed alover he had no idea ,where if he=hadnt had the meloton he would hAVE had a melf down if hehad done this

givemesleeporgivemechocolate we pointed out in dla form, that we are up at least 3 times a night for over 20 mins each time, think I put 20 -40 mins, when he has cramps (very frequent) incontinence, so resheeting, calming, soothing, redressing. Night terrors again calming and soothing. Some nights I am up 4-5 times with him.

Sorry Trace, thought you said you were surprised you got HRC - that's why I thought you'd been over-rated for care, but it doesn't sound like you were.

AM, it will also depend on the age of the child as under 5 I guess you'd expect to be up a bit in the night(can't remember exactly how old your ds is) but as they get older, the gap between them an NT kids gets bigger, iyswim - J is 7 and most 7 year olds would sleep through the night (he doesn't) but younger kids wouldn't.

DLA didn't get too bothered about incontinence causing washing, at least not with me - they said J should wear special nappies and drink/ eat less before bed so they initially refused high care and tbh only gave in on that because of the dangerous behaviour when up at night.

With those needs you should definitely be getting high rate care and lower rare mobility.

I doubt that they will reduce your award, but if they do make sure you appeal the decision won't you?

yes i was surprised i got HRC because to us ds as never slept we was used to it tbh, it was the pead we see who said its not right him being up most of night, plus i dont sleep as we take in turns watching dd whos undx and stops breathing and seziures shes now 20months old so we never though anything of not getting much sleep.

i got middle rate care and low rate mobility for ds2 who has dyspraxia and possible asd. i was surprised to get it at all to be fair, even though he needs it, my only experience of dla before had been when i was turned down. i have had arthritis since i was 17, and walk on crutches a lot of the time and they wouldnt give me dla for mobility. i also have it in my fingers/wrists so struggle to do many things around the house like chopping stuff and lifting heavy pans.

iv been told they are not medically trained so really have no idea

alfiemama you can get mobility componet from 3 we do ds gets high rate care and high rate moblity and hes 3 1/2

Thanks Phoenix, they said in the letter that I can apply when is 5 and unless severe behaviourial probs he wouldnt get. But he has, he must be bad if the paed said she didnt need to see any more and gave a dx there and then.

I dont think I should get high rate care and think middle is right for us, its just the mobility as he does have problems walking, struggles with steps and kerbs, has constant leg cramps. Has fallen and ended up in A & E 4 times due to the dyspraxia.

alfiemama they think ds as it too his face is a mess this week as he as fallen everyday , yesterday was busted lips, day befor was grased knee, day befor that was his elbow, butsome weeks hes falls free he as worse days and some none.

I didnt do it for the rteasons you give alfie but at the next renewal they awarded it with higher care

The age is the thing: as littlies kids still need lots of help and they compare toothers same age.

But its not supposed to be subjective so really it s shouldnt scare you off:go for it. I just wrote a letter toDLAforsimilar reasons with ds3 on the orders of the NAS lady and am waiting a reply now

btw on giveme sleeps scemata ds1 should get higherrate but- thheres only somuch energy!

Oh no sorry trace, hope little un is ok, its horrible isnt it?

Thanks Peachy, I sometimes think they think you should be grateful and you feel bad about trying to get more, but dont think that we should.

Trace I think you have a very good case for appealing.

IKWYM, peachy - our boys are v similar by the sounds of it and it did take me nearly a year and a half (and lots of stress )

To get higher care and higher mobility, I mean.

My 15 year old has aspergers and dyspraxia and gets middle rate for care and lower rate for mobility. He has receievd these rates since day one. It was reviewed recently and he was awarded same again.
If your ds needs to more attention than a child of the same age then he should be entitled to something. My ds for example is not fully of aware of road danger, ad has a fear of dogs - if a dog approached him he would think nothing of running into the road to avoid it.
Good luck with it, don't give up.