DLA finally through

[Triggles]

DLA finally went through. I'm relieved, of course, but puzzled as well. He's been awarded medium level of care. But we literally have to have someone with him ALL the time during the day and are up with him in the night every night a number of times, at least 4+ times per night and sometimes up at 3-4am for the day because he can't sleep (otherwise he's up by 5). We have to assist him in dressing and eating and personal care as he cannot do it himself or even stay on task. We were expecting high level of care to be awarded, based on his care needs.

We've been told we can ask them to reconsider the amount, and we're thinking about doing this. I feel uncomfortable with it, because it seems "grabby" but at the same time, my god, this seriously affects anything and everything we do all day every day and throughout the night as well. Even the school have put him on 1:1 for 25+5 hours a couple months ago and we're still working on getting a statement, but they've recognised the need for someone to be with him literally all the time.

Feeling tired and stressed now.... (and literally baffled as I can't see how they came to medium rate of care from the info they were given by us, the paed, the school, and everyone else.)

I don't know why people get turned down for higher rate when it's clear they meet the criteria - which you do if you are up 4+ times every night. Higher award is specifically for dcs who need care at frequent intervals during the night either several short sessions or one or two longer sessions. The amount of care can be significatly less than that needed during the day but the award is made because of the huge impact which disturbed sleep has for dcs and carers. Point out they have got it wrong based on their own criteria and the evidence you have already suppied and ask them to revise the decision.

Triggles, sometimes the award is made for MRC when they can see that the person needs 'frequent attention throughout the day' OR 'attention at night and some attention in the day'.

So, either they have got the impression that your DS is night-waking but doesn't need your attention (ie. that he is awake but quite happily led in bed singing to himself, or playing with toys, etc.) or, they have got the impression that you do give him lots of attention at night, but during the day he only needs a little help.

What you need to do now is to look at the reasons they gave for issuing the award. That will give you a first clue.

Then, go through the claim form (you did keep a copy, right?) and look at it critically. Did you write explicitly in a similar format to this:

How often your DS wakes
What you have to do
Why you have to do it
What would happen if you didn't do it
How it is different for a 'typical' child of his age.

With a child who is variable, it is useful to do sections:

On a good night......

On an average night.....

On a worse night.....

On the worst nights......

Also, it is important to know the benchmark for night criteria:

Up once for more than 20 minutes to deal with personal care needs.

Up several shorter times per night to deal with personal care needs.

That, generally speaking, that is needed for 5/7 days or more.

HOWEVER, there is also scope to claim that a child needs your supervision whenever they are awake, so although they may not wake, they need constant watching if and when they do wake to prevent significant harm or injury to self or others. The harm does not have to be certain, but has to be a reasonably significant risk.

Now, what you have to do is go through the copy of your claim form, and highlight any information you supplied about night needs. Also, look at the evidence you sent in. Try and work out whether you supplied enough evidence, or whether perhaps you weren't explicit enough. It is easy, when you live this stuff every day, to assume some knowledge of the Decision Makers, and to be honest, you don't know if they even have experience of 'normal' night waking of infants, let alone the night waking of a child with SN.

Then, you have two options. You write asking for a reconsideration because you feel that they didn't look at the evidence correctly, and you bullet point every detail that they have missed, referencing supporting documents, etc. This gives them the opportunity to see that they didn't make the right decision based on the evidence supplied.

OR

You write, asking for reconsideration, saying 'I,'m not sure I quite explained myself, because I believe my child meets the criteria for High Rate Care.' Then you go on to explain further his day and night needs.

It is important, in this case, to not just focus on night needs, because for a HRC award, they have to see that he needs 'frequent attention throughout the day' and attention at night. A person who only needs attention at night, but is independent by day, would still only get MRC.

It is really very important to make sure they know that he does not have a Statement, but his needs are so great that he is being given 30 hours on SA+ while they wait, because he can't be left unattended.

HTH

I did make it clear that we were up numerous times during the night providing not only personal care but also supervision as when he is awake one of us must be awake, as he cannot be unsupervised, plus that we provided constant care and supervision all day and that he has the 30 hours of 1:1 at school because he absolutely must have constant supervision. I explained why and in great detail and what could happen if we didn't provide this. I literally had over 40 pages of information, plus at least that many pages of letters and documents from the paed, OT, school, etc confirming this information. I am absolutely baffled.

We just got the payment today, no letter yet, although I was told they sent it on the 17th. As soon as we get it, I'll go over it and ask for a reconsideration. I did wonder as I'd heard rumours that they were going to be considering time away from home during the day at school in order to put people on lower care rates....

sorry, to clarify, we were also very clear that we had to provide assistance with all his personal care (dressing, eating, toileting, bathing, etc) and constant supervision throughout the day and on numerous occasions every night, 7 days a week, 365 days a year.

sigh....

i dont think i stressed it well enough either now he has his statement 1-1 25 hrs at school a week and is under CAMHS for self harm perhaps i should as for early review as my DS gets middle care and lower getting around?

Interesting. I've called and asked them what the reasons listed were.

They've put:

While parents say he wakes frequently in the night and needs care, supervision, and attention, it's not any more than a normal child his age would need.

So... a normal 4yo wakes up 4+ times per night between midnight and 5am EVERY night... wakes up and can't go back to sleep and has to be monitored each and every time until he goes back to sleep - sometimes up to an hour, sometimes he's up for the day at 3am or 4am. We have to stay awake, either listening over the monitor or sitting in his room, and supervise so that he isn't trying to wake up his brother in the next room, shouting, climbing on his bedroom furniture, trying to get out of the safety gate on his door. Changing his sheets and pajamas as he is not potty trained at night and goes into meltdown when he invariably wets through the pullups (practically every night). Setting everything back up on his bed just so before he will settle down. Spending 20 minutes at a time trying to convince him that 3am is NOT time to go downstairs and have breakfast.

hmmmmmmmm.....

Thank goodness he is not old enough for the mobility part. He often refuses to walk and just lays down on the floor (even in the roadway) and "shuts down" or is so overloaded with sensory stuff (especially bad during snowy or rainy weather) that he can't focus and trips repeatedly. He also has gross motor problems with a history of head injury from falling when walking or running. And the decision maker said that his refusal to walk or his problems with inclement weather basically have nothing to do with a disability.

I've told them I want a reconsideration and that I would be putting my reasons in writing. I also told them I want the decision maker's ACTUAL reasons (the ones they put on the computer, not the ones in the letter that are vague) in writing, which they are going to send me to hold on to.

It makes me so angry when they say there needs are the same as any child there age , i don't know any parents of nt children who are up 2-4 times each night having to settle their child, the fact he has 1:1 at school surely proves 'he's not like a nt child'?

Dd2 is almost 5, has 30hrs 1:1 (statemented), wakes 2 times each night and is very similar to your ds, our DLA claim came through just over a week ago and we were awarded HRC and LRM.

I hope you manage to get a good outcome (i'm sure you will as its obvious he should be getting HRC).

Thanks Marne. I was just getting started on the massive statement paperwork, when this hit. Now another thing I have to sort.

Thank God his school is wonderful and I don't really have to fight them for anything. I can't imagine how parents who have to fight the school as well as this can cope. I can feel myself sink lower and lower just thinking about putting this all in writing AGAIN.

Add to it that DH has been walking around in a tear lately, there just doesn't seem to be any let up. Concern that he might have colon cancer, and undergoing investigations on that. I can't cope with all this stress much longer on the little amount of sleep I'm getting...

Fingers crossed for your dh, sorry you are going through so much .

Triggles-Definately ask them to reconsider the decision My dd 3.7 is also a night time waker which is either intermittent 4/5 times a night short 25mins spurts or up for 1-2 hours wide awake between 1am-3am we were awarded HRC based on this.
We are under a sleep clinic so not sure if that helped.

Hope your DH's investigations come back clear.

Thanks. I have asked them to reconsider and will be sending in a letter explaining why I feel he needs the HRC. I reread through what I sent, and I feel it was pretty clear that we are up 3-4 times every night between midnight and 5am MINIMUM, often more, and always for a good 20 minutes each time, very very often for an hour or more, and some days up from 3am onwards. That seems to be within their guidelines, so it's a bit of a puzzle. But hopefully if I reiterate this very very clearly, it will be resolved satisfactorily.

Just got back from buying ANOTHER safety gate as one had broken. I'm thinking I should be buying stock in Lindam.

Def appeal. You've met J who is v similar and was awarded hrc. When they hopefully rectify their mistake they should backdate difference and tax credits change if dc get HRC too. They do with MRC but at a lower rate. You can also claim carers allowance with mrc or hrc which you may already know. I work a couple hours over the allowed amount so can't claim it.

Good luck it should get sorted but I feel for you as know what a nightmare the forms are.

If they think a 4 year old is up that often then my claim for dd is sure to be turned down :( she's 18 months old and is up between 7-12 times a night every night!! so I'm sure they will say that is normal! I wonder if these decision makers have kids!!! Dd has sensory problems, social anxiety, speech delay and of course sleep problems. We attend the CDC weekly so have sent their reports off so hope it will be enough. Good luck getting yours looked at again

im amazed and i was stupid to not ask them to reconsider my LRC n MRM really then wasnt I, i was just so happy at first i hadnt been turned down but surely as im up like you Triggles up to 4 times a night sometimes taking 20 min to hour to get him back to sleep and staying awake with him so he doesnt go off and start playing or doing anything dangerous surely they cant say thats the same as a NT child to me hes 10 years old most kids that age esp boys are zonked out and sleep right through dont they my other NT children are god i cant get em up in the mornings for love nor money

I've caved in for the moment. DH & I discussed it at length again and have decided to leave it at MRC for now. The money is nice, but not a huge issue to us at the moment. We are wading through the statutory assessment paperwork right now and reams of paperwork that I have to finish, and it's really taking a toll on my health. Plus this issue with DH's health as well we're dealing with. We've decided the statutory assessment MUST take priority for now, so we're focusing on that. It's by far the most important of the two, as it affects his education and safety in school.

We will revisit the DLA in June when we're close to DS2's 5th birthday. We were told we would need to reapply for mobility then, and would have to redo the entire DLA claim again anyway. (sob sob) So I may consider streamlining the night care information so it's much clearer and seeing if they will alter it to HRC at that time, while we also apply for the mobility aspect. By then also we will have more information from the OT on the sensory problems and motor skills as well to add to the reports.

At worst, we will wait until 2013 when it's up for renewal and apply for the change to HRC and mobility then, going on the logic that while they may think it's normal for a 4yo (which it's not!), there is NO WAY they can say it's normal for a 6yo!!

I am reaching breaking point at the moment and simply need to choose my battles. The MRC makes a huge difference for us financially, which means we can do some things for DS2 that we couldn't previously.

still makes me wonder what their reason not giving my DS the higher rate was thou ...weird , they make it up as they go along surely by sounds of it, good point in your case better to wait with so much going on, so much stress my BP is through the roof over all this they just all dont get the stress the whole family is under were all inc the other DC's suffering for it