have got higher rate mobility!!!!!!! But refused higher rate care???

[butty]

Hi,

i have finally had an out come on dylans claim for mobility and higher care component.
They have awarded higher rate mobility but kept care at middle rate?????
I have asked why not put up to higher like advised it would be, but they said that until he is 5 years old, it would be NORMAL for a child to be carried to and from bed as well as being checked at regular intervals through the night!!!!!!!
I have to move him at night due to his posture as advised by the physio of which i do twice!!!!!!
Also, he is getting too big for his cot and have no idea what to do about his sleeping arrangements as he wakes in the night and i am afraid that he will get off mattress and possibly harm himself as he is much much worse when he is tired.
The OT hasnt offered any support or ideas for his sleeping situation and i dont know what to do!!!!!
Any body have any advise would be much appreciated.

Butty.xxx

We got top rate mobility and had our care component put down to middle rate

I am sure somebody sits there saying "oh well, they have top rate mobility, we had better put there care side down!

we got told there was nothing medical we had to do with Ellie at night.

I have a friend who's child got refused Mobility but got top rate care and she sleeps throught the night every night, in fact she has to be woken in the morning!!!

Really doesn't make sense

Ellie hasn't slept a full night since she was ill at 8 months and we have been told by Dr's that her conditions she has go hand in hand with not sleeping well

We left it as when I rung them to ask why we had gone down to middle and should I appeal, she said if we appealed that they would look at the mobility also and we may lose that

Errrrr......blackmail!!!!

we left it as Ellie was bordering on walking and knew we may lose the mobility

But when we apply again next year I know we won't get high rate mobility so I am going to get help filling in the forms so we hopefully get higher rate care.

sorry for waffling!!!

So much seems to come down to luck IME. I applied for DLA for ds2 just after his 2nd birthday. He was awarded higher-rate care because he's awake at all hours of the night. I applied for ds1 when he was about 3.5yrs old. IMHO he needed just as much attention at night at ds2 does but he was awarded middle-rate care. It just seems to depend on who looks at your form and how generous (or not!) they are feeling that day.

I got higher rate mobility and care component for ds. The reasons stated were that he has seizures through the night every night, he chokes, stops breathing and needs suctioning, he is fed for 3 hours during the night, and even though he sleeps on a moving air cell mattress, we have to change his position every few hours because he has pressure sores. I am prob one of the luckier ones because i ahve never had a prob with dla and i really feel for those of you who have to 'prove' how difficult your life is and how disabled your children are. Perhaps these people who make these decisions should 'walk a day in someone elses shoes', before they are qualified to make the desicion. You would think they were giving away their own money.

Hmmm, bit tricky to decide whether to keep hold of what you've got or try for higher rate care. Prob try as I haven't heard of it going badly iyswim but there's always a chance I suppose.

you are right it is blackmail DLA always tell you that if they re look at it then you might end up wors off, i don't know of anyone this has happened too, i do however know plenty of cases when they reconsider and give a higher award, my DD'S were refused any care or mobility, on the grounds that they needed no more help than a child without a disability, we went on to get high rate care for both girls.
i think to get high rate care you need to show you are up at least twice per night for at least twenty minutes, good luck

Yeah, they'd look pretty stupid to say he needs HR mobility and then change their minds very soon. Much more likely they'll change it about the care...

How long did you say it takes to check him at night. Has to take 20 minutes or its not counted as being up (so each check say 20 minutes- otherwise you could be up 8 times, but they're all for 5 mins it won't count as getting up). (a VERY handy tip from a SW).

Hi guys,

Thanks for your messages. I think i will leave as is at the moment but will take the DLA advisors recomendations that when he does eventually come out of his cot etc.... to try again.
The main thing at the mo is that he is getting too big for his cot and his OT doesnt really seemed to have helped much!!!!!!!!!

Butty.xxx

butty
appeal appeal appeal
ds got high care rate since he was 7 mths old
my motto is what you dont ask for
you dont get

hope everything is ok
xxx

Cheers Doormat,

If i appeal, they will stop my money until a decision is made and i dont know if i can afford it at the mo as every thing that could go wrong has gone wrong in the last 2 weeks, hence not around on here as much!!!!!!!!

Any way, i hope you have a fabby dozey christmas, i know i will try to after the last few weeks.

Butty.xxx

sorry to hear that butty
never knew they stopped money until appeal has gone through
have a nice crimbo too
xxx

Butty-they havent stopped my dd,s money while we appealed and we have just won higher rate care.

Hope you are ok Butty, you have my email if you need to talk.

HTH

Cheers for that,

the lady on the phone said that it would be tret as a brand new claim all over again!!!!!!!!!!
I have just signed for my new car on mobility and am worried that they will stop it all when looking at it again!!!!!!!!!!!

Merry christmas from myself and the gang, hope you all have a good one!!!!!!!!!!!!

Butty.xxxx