oh no...have I done something silly?

teabag29

I was awarded dla for my dd (mrc and lrm) on the 1st claim. However my dd has many night time needs and based on this I have asked for a reconsideration for hrc.

The decision maker wrote that although dd takes a long time to settle she has no night time needs once the household has shut down and she doesn’t require her sheets changing when wetting the bed.

In my claim I enclosed a 2 month diary of day to day life with dd. In this I explained on occasions that dd wet the bed the night before but hadn’t woke me and so her sheets didn’t get changed until the next morning and bathed her the next morning (shes 12 but has very poor hygiene). There were also many occasions I was awoken and was up in the night with her.

I also explained in the diary of occasions whereby I hadn’t been awoken to daughter and she was up in the night causing danger to herself. 1 night she was downstairs stealing lots of food which made her sick, another night she was in the bathroom playing with bleach. There were more examples also.

The thing is my dd is a handful to say the least and by the end of the day I am exhausted (I have 3 younger children too). Therefore when she has finally settled off which is more often than not past midnight and I can then go to sleep, I usually sleep through unless im awoken. My dd has serious behaviour problems amongst other things and she is very sly, especially when it comes to creeping downstairs for food (which she has an obsession with) so I don’t always wake up if I don’t hear her. She will not wake me up if she wets the bed, she will just sleep in it. If I wake up in the night I always check on her and if she’s wet I will change the sheets and bath her but there are times I don’t wake up in the night as I’m only getting 5-6 hours sleep anyway.

Therefore I feel the decision maker has based his decision on the night time care needs dd gets rather than what she needs and it does say clearly on the dla form tell us about the extra care needs dd has even if she isn’t getting them at present. The thing is Although I don’t care for her at night as much as she needs, I still give her extra care needs in the night 2-3 times a week. I am only human and I do need sleep, I cant sit and stay awake all night and as I have said dd is very sly and will do things quietly.

My dilemma is have I pushed the boat by asking for a reconsideration? This of course means they could change the award all together and drop the dla or give me no award at all. I don’t want to come across as greedy and I’m very grateful for the award but at the same time I do want to get everything I can for dd to make her life better. I have already bought a tv and dvd for her room with the dla payment and got her some 1 to 1 tuition for after school to help her with her learning. I am currently sorting out some 1 to 1 swimming lessons for her to. She does have many night time needs, she wets the bed atleast 3 times a week and will get up and wonder around in the night...but like i say not all of these needs are being met until the morning if i'm not awake as she will not wake me (mainly the bed wetting)

Do you think I have grounds for reconsideration for hrc and if not is it too late to ring back and change my mind about the reconsideration? I don’t want to risk her losing her dla all together

merlin68

If I was you I would lock all cleaning materials and food away. 2-3 times a week probably isn't enough for HRC.

GlasweJen

I think you're pushing it to be honest. If you're writing in a diary that you're not getting up 3 times a week to help her with bed wetting needs then how can you justify wanting DLA to support you in it?

So she got up and gorged herself on food, what did you actually do at the time when she was doing it? Were you up stopping her, helping her clean up the sick, putting her back to bed etc? Same with the bleach, what were you actually doing? Were you providing care?

The bleach/food can be solved easily enough, you are likely to be told to lock your cupboards and secure your cleaning chemicals/anything else dangerous at night before you go to bed which is completely reasonable to ask of a parent with 4 children who aren't teenagers.

As for the bed wetting, there is lots of (non DLA) support for it, my sister was a bed wetter until she was 14, some kids just don't get bladder control sussed at night.

tom9980

Find a solution to stop her getting up i.e motion sensor outside her bedroom door with alarm by your bed to wake you.

Darlyd

I don't know about the DLA am sorry. BUT can you not lock the kitchen door? And the bathroom door? Or even lock her in her room, May be far fetched but at least she will be safe then. ?

*Chattie*

what difference will money make to the scenario you have just posted as you say you won't be giving her any more care than you currently give?

peachyprice

I really don't mean to sound horrible, but how would extra money help?

Darlyd

There is a case somewhere I read on MSE I think it is over on the Benefits forum, Two cases actually of them appealing and losing the DLA.

shy-but-need-help

My son was on lrc/lrm - he's 8, can not dress himself, wees on his clothing at least once a day, can't cut his own food, falls out of bed at least once a night (and has to be lifted back in and that's just the start of the night needs, my house looks like a weird DIY fortress with how many plastic tubs/draws we have to organise everything away from him safely... people visit and look at us like we're lunatics as most things have a label or he gets very stressed that he might lose them) can't walk outside without holding onto an adult at all times (tripping risk and no practical safety awareness- I've had to babywear my last 2 kids as I need a hand for him to hold at all times) and with the renewal it was cancelled (it actually got moved up to mrc/lrm for 2 weeks then school sent back their part of the forms and it was cancelled all together as school wrote he can use the toilet etc on his own- he can, however he wees on his own clothing & shoes daily. He can feed himself- again, he can because we put everything into pots he can open easily, he struggles with cutlery and couldn't open a packet to save his life, also school doesn't have to take him near roads or outdoors except in their playground which is designed for kids, he's keeping up with his school work- because he uses a laptop as he physically can't write legibly. But to the DLA schools word is God) He has a paediatrician who sees him once a year, he's been signed off by physio and occupational therapy as both say it's something he'll just have to adapt to- therapy won't help/cure so we just have open referals to them so no professionals to refer the DLA to.

We asked for a review, they recorded we decided to cancel our claim and we only learnt this after we'd heard nothing for 12 weeks and called (were told not to call back before 12 weeks as a review could take that long) eventually they did review and still decided he gets nothing.

We could appeal but I've lost all umph about it- we coped without the money before, we coped during the weeks they took to review it, we'll cope without it now. I personally think the criteria are tougher now- my sons needs are entirely unchanged from when he was 4, only now he's 8 so obviously they're more problematic (one expects a 4 year old to wee on themselves and need food cutting up, not so much an 8 year old- when he was a newborn I never once thought I'd be having to help him step into underwear at his age)

They're definitely getting tougher and I think sadly a large part of that is expecting parents to accept and "deal" with the extra demands of their child (our SN kid is 2nd of 5 and I'm fortunate in that the others help him rather than treat him as a pain- it is very bitter sweet to see my 4 year old help his brother twice his age zip his coat up though) New government and I'm sure they're cutting the numbers on DLA by finding any nook and crook they can to stamp someone as not needing/not eligible.

We've just decided to move forward- life isn't pretty for us financially at the minute (DH was laid off 2 years back so went back to university so we're 7 people living on student loans... my daily mantra is "it'll all be worth it" and it best be!) but I figure the less they're giving our family the less they can suddenly cancel out from under us, I can cope on very little but I can't cope with having out goings based on something they can be whipped away as suddenly as DLA can.

gingin_2

I would say you are pushing it. As long you lock all doors with anything hazardous in I would say what you have posted is part and parcel of parenting.

teabag29

GlasweJen wrote: »

So she got up and gorged herself on food, what did you actually do at the time when she was doing it? Were you up stopping her, helping her clean up the sick, putting her back to bed etc? Same with the bleach, what were you actually doing? Were you providing care?

.

Yes the examples I gave here are the ones when i was up with her. yes when i caught her i stopped her, cleaned her up and all that. When i am awake her needs are met and i provide the care without a doubt but as i've said i'm not always awake.

With regards to the food, we do lock our food away in the indoor shed but that particular night i'd forgotten to lock the door on it. She has broken locks we've put on the fridge before now and will try her best to find where i've put the keys. We have locks where possible but cant lock her in as we were told by social services that this is a fire hazzard and they told me off when I tried to put a lock on her door. Its hard to lock everything away as its a small 3 bed house and theres 6 of us here and its very overcrowded. I do try to lock what i can away though.

With regards to bed wetting, she doesnt bed wet because she doesnt wake up in time or has a weak bladder, she just has very poor hygiene and severe behaviour problems and alot of the time she will do it for laziness and on purpose for reaction. She will also soil on her bed (she is being assessed by camhs, there is mental illness on her fathers side also).

With regards to what good will money do? well although it may not help me to stay awake longer in the night what it will do is give her more opportunities. I can now afford some 1 to 1 tuition after school for her and swimming lessons but more money would obviously mean more of this. It would also help with costs of new matresses she gets through ( she will not sleep with a meatress protector, she rips them off each time i put them on), washing sheets and clothes etc....failing that it will pay for 100 cans of red bull each week to keep me awake throughout the night lol