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sooooooooo mad stupid dla

(35 Posts)
bubble78 Mon 24-Aug-09 14:09:14

i am so mad i recently asked dla to look at my 6 year olds sons mobility award again the refused to higher it to high rate whicj i am not arguing but they have lowered the care part to middle rate as they said his needs are no greater than a boy the same age which i think is rubbish i have written a letter explaining his needs would you guys with much better knowlegde have a look and see what you think should i be happy with middle rate or do you think it should be higher

dear sir/Madame

I am dealing with the claim for ****.

I received the decision on his disability living allowance and I think the decision is wrong.
You have lowered his help with personal care to middle rate from higher rate and I think it should be higher rate here are my reasons why

His personal needs are as follows
? he has no communication skills as he cannot talk and can?t express himself and does not understand much at all of what is said to him.

? He needs to be fed his meals as he can not do it him self
? He needs dressing as he cant do it himself
? He needs washing as he cant do it himself
? He needs his nappy changing several times a day as he not toilet trained and may never be
? He often rips his nappy off ( under his clothes as he doesn?t understand he has to keep it on) therefore he wets his clothes or soils them and needs changing this happens nearly every day
? He often will mess with his hands down his nappies after he has soiled it and wipe it all over his clothes and anything he touches meaning he needs washing and changing
? He will put anything in his mouth and lick shoes etc so he has to be watched he isn?t doing that even playing in the back yard he has to be watched that he isn?t eating leaves and flowers etc
? His needs are like that of a 12month old my 2 year old daughter needs less help with her personal care than he does

His night time needs are

? He does not go to bed until 10.30 pm every night
? Even when he goes to bed he isn?t quiet he is running and shouting around his room ( he does not understand to be quiet because its night time) and he often wakes his little sister
? He does not go to sleep till between 12-1 most nights, in the time between he has gone to bed and gone to sleep he will have taken his nappy off numerous times and usually have wet his clothes and bedding which then needs to be changed
? He often will mess with his hands down his nappies after he has soiled it and wipe it all over his clothes and anything he touches meaning he needs washing and changing
? We have to keep going in till he goes to sleep to check and change his nappy and put him back into bed as he pulls his bedding off and can not get it back on the bed or he is sat on his window sill and we have to put him get into bed
? once he is asleep we have to change his nappy again so that he doesn?t get wet as he a lot older he drinks a lot more therefore wets a lot more
? he is often wakes in the early hours running around his room etc so we have to get up again and change his nappy and stay awake until he goes back to sleep or morning comes whichever is first
? when wakes up in the night even though he has a gate on his bedroom door he is at an age and height that he tries to climb over it and we have to get up again to make sure he stays in his room because if he got up Ryan has no sense of any dangers at all that he may harm himself (turn oven on, run hot taps, turn fire on etc?.)
? He was prescribed MELATONIN from his doctor to help him relax and get to sleep but this didn?t work it helped him get to sleep but then he would be up at 2/3am so we don?t use it any more

Basically he needs help with personal care throughout the day and night. he does not like wearing clothes nappies or anything and it?s a constant battle 24/7 to keep him dressed or at least in a nappy or he would just wee and poo anywhere we have even tried
Cello taping his nappies on but then this causes a hazard because he can get that off and then he eats it...

From my points above I hope you can see that he needs a lot more care both day and night than of a boy his age without the disabilities that he has

I accept your decision at this time not to award high rate for mobility (help with getting around)

I am very distressed by this whole matter I have a lot to cope with him and feel that I should not be having to fight for the higher rate

NorthernSky Mon 24-Aug-09 14:28:29

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bubble78 Mon 24-Aug-09 14:37:52

thank you northern sky i will add about the times we are with him inthe night etc

and going to look at your other post now do you get mobilty too?

NorthernSky Mon 24-Aug-09 14:53:34

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bubble78 Mon 24-Aug-09 15:03:11

yeah that is what i originally asked them to look at as i felt it should be higher rate mobility for same reasons you just said but they left that at middle rate and lowered care one oh well will send this letter off and hope its enough i really dont want to have to go through a tribunal

Debs75 Mon 24-Aug-09 15:13:37

Your son's care needs are very similar to ds's at that age and he got HR in care and mobility. Put down the times you are with him like Northernsky says.

Marne Mon 24-Aug-09 15:21:11

Bubble- it makes me angry that your son can't get the higher rate that he so deserves, I have a dd2 with ASD/HFA, most of her needs are the same as your sons, we get higher rate care but no mobility (i'm working on mobility), if you son's needs are no different than any child his age (6) then my daughter must be years ahead for her age as she's just 3.5. I think your letter to them explains why your son needs higher rate and if they don't take any notice (and not award him higher rate) i would fight and take it to a tribunal.

We are trying to get lower rate mobility for dd2 as taking her out has become hard work but they seem to think its normal for a child to run into traffic and they think we should be able to control her as she's only 3 years old, what they don't understand is dd2 is bigger than her 5 year old sister and can no longer fit in a pushchair.

Good luck and i hope you manage to get the higher rate for your ds.

daisy5678 Mon 24-Aug-09 16:06:25

He is entitled to high rate for care, from what you have written and even possibly for mobility is he also has severe behavioural problems that requite restraint.

Good luck - go to appeal, don't wait for them to faff with re-consideration. Call and ask for an appeal form.

bubble78 Mon 24-Aug-09 19:15:39

thanks for all your advice its makes me feel better to think that its not just me who thinks he should get higher rate care i wont fight the mobilty one this time but i personally think from other things i have read that that should be higher rate too

NorthernSky Mon 24-Aug-09 20:47:16

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daisy5678 Mon 24-Aug-09 20:50:22

I agree with Northern Sky. It's not two separate appeals; it can be done as one. I would go to Welfare Rights/ Citizen's Advice and get help sorted to go to the appeal Tribunal with you. They will have all the legal criteria stuff sorted.

Also, try getting a letter from your consultant. That's what helped with J's.

donkeyderby Mon 24-Aug-09 21:32:30

I can only echo what others have said - you sound like you should surely be getting high rate care and mobility for your son.

Can you get someone to help you with forms/appeals?

NorthernSky Mon 24-Aug-09 21:56:43

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bubble78 Tue 25-Aug-09 09:56:44

thanks again for all your messages it has given me more hope and strength to fight for what he deserves

bubble78 Sun 11-Oct-09 16:40:17

well heard back from them they have still refused to issue higher rate care
just a couple of questions

1 do you have to attend if it goes to an independent tribunual??

2 if i didnt appeal now how long before i can just get dla to review claim again without being through independent tribuual??

saggarmakersbottomknocker Sun 11-Oct-09 22:00:46

bubble - you don't have to go to a face to face panel appeal, you can elect to have a written appeal but statistically face to face is more successful.

Not really sure about your second question but I think it's 6 months before you can try again. If you have an award of middle rate they would expect you to have evidence that things had got worse I would think.

I've been to appeal and it was a bit nerve wracking but certainly worth it. Do you have someone to help you with it?

BobbingForPeachys Sun 11-Oct-09 22:13:21

I was recently told bedtime is a 11o'clock cut off- maybe it is as simple as that?

They did this to ds3 and wouildn't raise it either. Several months on he has started to sleep (not so good- long story, less tired + more behaviours!) but I think the lack of it takes X hours and the bedtime may be key.

magso Mon 12-Oct-09 09:13:53

Peachy is right - the night care element relate to the adult households night ( I was told usually 11 pm - 6 am). It may be useful to document (perhaps record a diary) how many minutes/ hours are spent careing for your child during the 11pm - 6 am adult night hours. I heard somewhere that spending more than 20 minutes at least 5 nights a week between midnight and early waking should qualify parents for the night side of care.
I was told you can only get HRmobilty if your child cannot walk OR it is impossible to make progress in the desired direction ie the child refuses to walk. ( Saying only they run off / have no sense of danger indicates the child can walk and should get lrmob if over 5)Therefore I was advised to comment on the 'impossible to make progresss' aspect (eg cannot go to the shop because child will only go in opposite direction to the duck pond so runs off and has to be restrained then sits down in the road and is too heavy to lift side) It is obvious to us but needs to be spelt out!. (We got mr)I think the assessors need the stark facts ! Good luck

BobbingForPeachys Mon 12-Oct-09 09:18:10

Yes the mobility bit is difficult with asd kids

DS3 can make progress but has to have someone hover constantly as he will run off or in front of a car, but becuase he moves generally towards the destination on his own legs we do not get HR. Likewise ds1,who needs supervision as he is prone to some quite astounding and sudden behaviours. I thnk it's right with ds1,ds3I think should probably get HR but we had to appeal to get what we did and as it has been awarded until a6 (nope no idea why- won some kin of random lottery I guess) then we shall let it be for the time being.

What i'dgive for a blue badge at times though!

parentsofdis Mon 12-Oct-09 09:35:28

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magso Mon 12-Oct-09 09:39:25

(same here peachy - decided against appealing but a could do with a blue badge at times - we have had a few scary near misses recently - he runs too fast for me now! I am wondering about trying for a badge for myself!)
Bubble I am so sorry your appeal was not successful. Is there a money advice unit locally that could support you?

BobbingForPeachys Mon 12-Oct-09 09:42:06

parents of, MN asked you I unerstand to advertise your website on the charity noticeboard rather than main SN threads? You could easily post advice rather than just linking to you own endeavours after all (And we are not short on advice here; as well as most professions covered we have a great many parents, spomeone studying asd to phd level and I am at ma level).

Your inoput would be mostwelcome (asaredas I assure you), your adverts not so

I thought it was an oversight at first but it is coming over as more intentional post- request.


Check out the cerebra website, they have a wellr egarded guide. Also does the NAS in your area have a disability advisor who can visit you? Ours does and they are great for help with this sort of thing.

NorthernSky Mon 12-Oct-09 11:46:29

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MumOfThreeMonkeys Mon 12-Oct-09 15:47:27

shit! i was gonna apply for the higher rate mobility. dd gets hr personal care and mr mobility..... maybe i'll just be happy with what she gets even thou i think she is so entitled to hr.

hope it all works out for you bubble as if you dont have enough to be dealing with angry

lou031205 Mon 12-Oct-09 18:22:55

When I applied (DD1 was 3.0 and at the time just 'GDD' and epilepsy) I wrote an account detailing the variations in our night.

On the best nights.... up at least once, for at least 20 mins.
On slightly worse nights....
On average nights...
On worse nights...
On the very worst night... no sleep at all.

I stressed that even though on the best nights I might only go in for 5 minutes, I still had to be awake for at least 25 minutes, to ensure that DD1 had returned to sleep. We got HR care.

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