oh no...have I done something silly?

Nicki

merlin68 wrote: »

In that case the DLA should be used for a night time carer. It is not there for extra tuition and swimming lessons. You could pay someone to watch her over night.

There is no restriction on what DLA can be spent on. It can be used for anything to make family life easier, even extra gin for stressed mummy if that's what it takes . Direct payments on the other hand can only be used for the purpose they were awarded. OP have you checked with your LA whether you might also be entitled to those for your DD's nighttime care?

I posted on your other thread, and I'll repeat what I said there. I think on what you have posted middle rate care is the right award, and that is based on the fact that I have a child who has very similar care needs to you, and we get, and are happy with, middle rate. Higher rate IMO (and it is also my understanding) is for acutely disabled children. The ones you have to get up with 3 times in the night to clear their tracheotomy tubes otherwise they die, or the kids who have no body movement and need to be winch lifted from bed to wheelchair and tube fed. The kids who are a bit of a handful in the daytime, need a little bit of extra help, but sleep through the night, get lower rate or nothing at all.

We didn't go up from middle to higher rate even when my DD developed epilepsy which is uncontrolled at the moment, on top of all her developmental delays, lack of speech, no safety awareness and no independence skills, so I personally would be surprised if bedwetting and binge/vomit cycles tipped the balance, given that the consequences of an unsupervised epileptic fit are potentially far more serious than either of your scenarios.

leos-mummy

I've read this thread, trying to make sense of it but just cant work out the abbreviations OP has used

shy-but-need-help

leos-mummy wrote: »

I've read this thread, trying to make sense of it but just cant work out the abbreviations OP has used

DLA- disability living allowance
lrc- lower rate care component
lrm- lower rate mobility component
mrc- middle rate care
hrc- higher rate care

(those are the elements/components of how DLA is made up- paid at different rates based on which level your qualify at)

Think that's about it?

mizzbiz

Well, I don't know much about DLA and all that at all, but I felt compelled to write something on this one because it made me realise how much some people sacrifice in their lives to bring up and look after children with special needs. It's really moving actually - harder than most conventional careers and yet so poorly paid and rewarded. I just wanted to say I think it's very sad that you have to fight to get any kind of support under these circumstances when there are so many adult chavs hanging around the streets and town centres all day, having never done a stroke of work in their lives and never cared for a soul except themselves.

Like I say, i have nothing constructive to add except that I wish you all the best and hope you get the extra measly £25 per week for all the sleep you lose and worry you have.

CH27

You can withdraw you appeal if you want to.

jenjade

after reading the comments i feel that i have to comment

please do not lock doors inside your house if there was a fire it could delay peoples escape and could end up with someone being seriously hurt of dying.

I understand completely that you need your sleep and are exhasted but i think there are a few things you could do to make things easier.

You can by alarm/ sensors that are activiated when the bed becomes wet this would prevent your child sleeping in a wet bed all night.

Fix a bell above her door so you hear her come out of her room then you can get up and deal with her quickly rather then finding that she has been up all night getting into trouble. or motion sensors. ?

I think the bell/ sensors would help you get a decent night sleep when she is in bed sleeping and prevent her getting up and over eating causing you a lot to clear up!

Good luck

JC9297

jenjade wrote: »

after reading the comments i feel that i have to comment

please do not lock doors inside your house if there was a fire it could delay peoples escape and could end up with someone being seriously hurt of dying.

It really depends on your house, we have two doors into our kitchen which are locked at night to keep our son out but there is access to the back garden through the dining room, as well as to the front through the front door.
We also have locks on our bedrooms (not his) to keep him out during the day (when we are not in there), as he turns things upside down.
It is absolutely not appropriate to lock a child in their room to keep them out of things.

delain

tom9980 wrote: »

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

I did this with my DD1 (now 8) 2 years ago. I did not tell her I was putting it in and it was set up downstairs and only went off when you get into the hallway by the kitchen....

Anyway it was really loud like a fire alarm and in the time it took OH to get there she had pelted all the way upstairs and was in bed panting like a mad thing facing the wall :rotfl:

:rotfl:She never did it again!

The OP's daughter is 12 though so it might not be so straightforward, we only did it as a last resort because DD1 was taking perishables (ie yougurts) and hiding them in her room or under the sofa or silly places and eating them after they'd been there a while.

Needless to say we had a few vomiting incidents, and I couldn't get her to see that yogurts have to be kept cold or they make you sick. She just thought I didn't want her to have them!

I don't know what to suggest to the OP really. It does sound like her DD has a lot of care needs :eek:

blessings3

@ relic - there is fun and there is disrespectful !!!!! masquerading as a sense of humour. Telling me as a mother of a child with a disbilty to ''lighten up'' over your implication that we are all claiming for having a splinter is like telling a black person that using the N word is only a bit of fun. Disability seams to be the new 'acceptable' thing to rail against. is Frankie Boyle your poster boy?

Oh and as for the Alarms Great except they wakes my other children and husband (who shock horror has a full time job) 5/6 time a night on a good night when my son pees'(bladder problems) and 12+times when he is having a bad episode and is wandering unable to sleep. Lots of solutions seam very simple but a re not so practical in real life.

I have not slept in the same bed as my husband for 10 years as we each sleep with one of our other children as my eldest can be very unpredictable and very rarely unaccountably/unpredictably violent particularly when disorientated as in night wanderings.

I would have a better sense of humour if my life wasn't quite so crap a lot of the time.

Ames

It's not a nice thing to think about, but could your son use a commode through the night? Or to put an alarm just outside her door, or just downstairs or something?

Couldn't you sleep in your eldest's room, as you're already sleeping with one of the other kids sto keep them safe, wouldn't it make more sense to sleep with her (or even on a fold out bed outside her door) to prevent her getting to that stage?

Are you a light sleeper? How about wind chimes by her door so that you'd be able to hear them without waking the whole household?

If she's disoriented, would a simple stairgate stop her? If she couldn't unfasten it in her muddled state she might give up and go back to bed, before she's got chance to fully wake up?

Sorry if that's all stuff you've tried and that I'm teaching you to suck eggs.

Maybe if you gave a list of all the issues and what you've tried, fresh eyes could see something you couldn't? I know when I've done that on here with other things it's been really helpful. On the other hand, I'd totally understand if you didn't want to put out so much intimate information.