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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

DLA

32 replies

boocha · 16/04/2011 12:19

My ds has been awarded middle rate care and lower rate mobility, he is 7 and has autism.
Do you think it is worth asking them to look at his claim again as we put on the form that we are up constantly through the night with him and one of us sleeps on a mattress in his room because our bathroom is downstairs so it is a nightmare, when he wakes he needs supervision.
The award letter says we have been awarded middle rate because he needs attention right through the day. No mention of the night time, would you bother or is the middle rate the right one?

OP posts:

logi · 16/04/2011 13:13

My son 7 ASD recieves HRC and LRM we are up alot in the night too.
It may be worth asking them to look again.

Larissaisonline · 16/04/2011 13:30

Hi there we receive MRC and LRM and we are very rarely up in the night with ds (5 asd), it is his daycare needs that he gets MRC so you should ask for them to look at it again.

HTH

Original poster

boocha · 16/04/2011 15:13

I thought so, thanks , il ring them on Monday and ask them to look at it again.

OP posts:

EllenJane1 · 16/04/2011 17:25

I agree, boocha. We lost HRC once DS2 stopped needing as much night time care. I think it depends on how much time, how often between about 11pm and 7am. Sounds like you can present a good case.

hanaka88 · 17/04/2011 06:57

I recieve HRC and am up all night

Original poster

boocha · 18/04/2011 09:55

3 times I have rung the dla today and 3 times they have told me that my sons night time needs are the same as any other childs the same age.
the last time I rang I ended up in tears and told them it doesn't matter, just forget it.
I have hardly had any sleep last night and some kid at the dla is trying to tell me that his night time needs are normal.
It's obvious every time that they are just doing their job and trying to talk me out of it being looked at again.
What should I do?

Just leave it and be happy we get anything?
Or ring again later today and insist it is looked at again?
My head is banging!

OP posts:

Ben10isthespawnofthedevil · 18/04/2011 10:27

Is it not a "reconsideration" that you need to ask for based on his night time needs being in excess of a NT 7 year old? The people you are speaking are the call centre agents not Decision Makers if I understand correctly and will merely be reading off the file.

Ben10isthespawnofthedevil · 18/04/2011 10:29

By the way, my DS is 5.10 and is not up all night long. We have very early mornings but he will sleep from 8ish till 5-6ish. It is definitely not "normal" for a 7 year old to be having such awful nights. So I would not accept it if I were you.

Original poster

boocha · 18/04/2011 10:55

I rang again and asked for the personal care rate to be reconsidered, I repeated again that one of us has to sleep with him otherwise he would wander round the house, waking his sister, putting himself in danger etc but she just kept saying well what would he do to put himself in danger? I said there are a lot of dangers in a house for a 7 year old alone, knife drawer etc, and that he wouldn't go back to bed just mess around disrupting us all.
she said I'm not giving enough evidence that he needs support 24 hours a day.
Reluctantly she agreed for it to be reconsidered by the decision makers but I have to put additional points in writing.
How can they not see that his night time needs are not normal for a 7 year old?
Am I missing something here?

OP posts:

CRAZYCREW · 18/04/2011 16:31

you know my daughter has a 18 mth old little boy and he is up most of the night on his inhakler or just with tummy aches as gets very constipated.

He was born with his heart the worng way round and on lots of meds and they turned us down point blanc and we are going to a tribunal as he is on diurectics that make him wee more so we have to change him hourly so that alone is an extra care need if you get what I mean. He does do well but breathless.

I really hope i win it for her.

Original poster

boocha · 18/04/2011 16:45

good luck crazy crew, it's hard going with the dla, I've never questioned anything with them before but I know night times with our son are not normal.
I'm angry with myself for getting upset on the phone to them but obviously they are just doing a job.
Feel like giving up to be honest.

OP posts:

Ben10isthespawnofthedevil · 18/04/2011 19:16

I would do a diary for a week esp showing the nighttime care. Most parents of NT children of 7 would not have any entries between 8 and 6 or 7.

dolfrog · 18/04/2011 19:43

boocha

Disability Living Allowance is important for adults, who have a wide range of disabilities, and to have a DLA award as a child will make later reviews more managable.
DLA is the only method of official disability recognition in the UK, with regard to official support options, disability recognition in the work place, and the sliding scale of working tax credits.
And those who look after those in receipt of the Middle or Higher Levels of DLA are able to claim the Carers Allowance as a form of income.

whatever17 · 18/04/2011 23:49

just applying for DLA now. What about using a disability lawyer - has anyone tried that? Any stories?

showers · 19/04/2011 00:16

We went to tribunal and won.My ds was on middle rate care and i kept ringing dla and was getting nowhere. Like you we had very unsettled nights. We went to tribunal and was awarded the higher rate care and also the lower rate mobility.It was definately worth it for us to go tribunal! What have you got to lose?? Nothing!!!!

whatever17 · 19/04/2011 01:20

showers - did you do it yourself or use legal help?

SacreLao · 19/04/2011 01:41

I get HRC and LRM or my 7 year old ASD son.

I made sure I listed all aspects of his night care AND how this was not normal for a child his age ..

example - My son wets the bed and needs changing regularly, I explained that most 7 year olds will go the toilet themselves.

Sounds obvious I know but not all the DLA staff have children and understand what a child could and couldn't do.

I would re-apply for the HRC and list everything you do in the night, keep a diary with dates and times, this will support your case massively.

We have door alarms for my son's bedroom as he gets up and wanders and I listed this, we have to wake up every time the alarm goes off and return him to bed, wait for him to fall asleep and re-set the alarm.

Again I listed that most 7 year old's sleep through the night and upon waking can be trusted to return themselves to bed safely and go back to sleep.

I really suggest you read Cerebra's guide to claiming DLA, it is fantastic for autistic kids and really helps make sure you cover everything.

Definately fight it as if he has night needs you are entitled to it!

PM me if you want any help or advice, I'm a bit of a DLA expert now lol although it took me many re-considerations and claims to get there.

Original poster

boocha · 19/04/2011 09:35

Thanks everyone, I think the problem is I'm not stating in the right way what his needs are?
Even on the phone to them thinking back the person at the dla was saying explain exactly how he is a danger, I just couldn't think!!
I know what I'm doing now, I've looked at the cerebra guide and me and dh are goin to sit down and do the letter together.

OP posts:

Original poster

boocha · 19/04/2011 09:38

Do you not think Sacrelao that they are very difficult on the phone? I would imagine you have to be quite hard faced to do that job but jeez they really do tie you in knots.

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lisa6967 · 19/04/2011 15:48

i have dla form to fill in and i am petrified!! lol, I have all the issues u all seem to have but my son is only 4, he will be 5 in september, do i bother filling in the form at all!!

usedtobeahappycamper · 19/04/2011 16:09

boocha do you have a friend with a NT child of the same age who could keep a diary for the same days to illustrate how much more you do than would be necessary for a NT child?

tabulahrasa · 19/04/2011 17:21

does he need more supervision than an NT 7 yr old? You mention Knives and things IMO 7 yr olds know not to play with them

Original poster

boocha · 19/04/2011 19:19

tabulahrasa
he needs more supervision than a NT 7 year old in that he never sleeps through the night, constantly wakes and we have to be in his room to reassure him otherwise he would get up and wander.
I mentioned the cutlery drawer because the dla woman wanted to know what dangers there are for him in the night if left unsupervised. (like dh said it's not as though he would be rampaging through the house with a bread knife!)
I've sent in a letter detailing what a normal night for us is like, we'll see.

OP posts:

tabulahrasa · 19/04/2011 19:50

oh I didn't think he was after killing you all in your sleep,lol, I was just trying to work out what it is you need to tell them that you haven't

I mean I don't think it's typical for a 7 year old to not be self settling through the night, but if that's not enough...

What do you need to supervise him for? At 7 DD could get up by herself at weekends, get herself cereal and bung on the TV while I stayed in bed doing the whole I'm awake, but I don't want to move yet thing, lol. So if I could trust her to do that, in theory I could trust her in the middle of the night - I mean obviously if she got up I would have got up and put her back in bed, but I knew she wasn't going to do anything dangerous.

How is he for awareness of dangers? the big ones in your house are all stuff like, as you've said knives, but the cooker? electricity? water? toaster? microwave?

What's he likely to want to do that isn't safe?

tabulahrasa · 19/04/2011 19:51

oh another big one, would he try to go out?

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