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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

In being petrified about the welfare changes which will affect parents who care for disabled children?

118 replies

Dillydaydreaming · 12/12/2011 17:21

AIBU?

If I am then please explain why parents (often the mother) who have to give up work to take on a caring role are going to be penalised by this utter scum of a "caring" ( don't make me laugh - I might actually fucking cry) Govt.

I am hearing that some families are going to be worse off by huge amounts a month - one family by nearly £200 which is massive if you are already a low income family.

I could quite honestly cry with worry. I work 16 hours a week, my son who is autistic needs supervision day AND night, I am often utterly exhausted and cannot commit to any more hours. I am currently off sick due to sheer fucking exhaustion and yet this fucking Govt think unless I work 20 hours a week I am workfare fodder.

Well do you know what? They can go screw themselves - stupid arseholes all of them.
I cannot physically do any more hours, I can hardly cope with those I do have.

Even worse is the suspicion that with the continual drip feed of erroneous facts and figures designed to portray us all as scrounging workshy wasters there are many who simply won't give a shit prevent worse will AGREE with the changes because they are too thick to read behind the headlines. Children with ADHD qualifying for free cars anyone? What a load of bollocks THAT was, but despite the later retraction by the DM, the damage is done. I've already seen it repeated here by someone who "read it somewhere".

Caring my arse. This Govt does not care for
anyone except those who will line it's pockets

Actually while I feel THIS tired, exhausted, drained etc I cannot think anyone can justify this to me.

This Govt is utter shit of the highest order and my contempt for them knows no bounds.

I am crying, scared and angry all at the same time and it's horrible.

OP posts:
grumpypants · 12/12/2011 20:17

peachy thank you for explaining it. Dreadful.

FabbyChic · 12/12/2011 20:23

I only get tax credits because I get DLA. I forgot I'd lose that too, wow £146 down a week for me in 2013. Have to get myself a lodger.

Dawndonnathatchristmasiscoming · 12/12/2011 20:30

London As I said earlier, I've lost my two hours a week respite care. I look after a disabled dh and three disabled children. I work around eighteen hours a day, my sleep is always broken. The government pays £55.00 per week for this. That's not £55.00 per disabled person, that's my carers allowance for all. I save the government a fortune. I have a good degree, as does dh, but dh became ill and is unable to walk, and I had to give up work to look after everyone. Not funny and bloody hard.

Original poster
Dillydaydreaming · 12/12/2011 20:40

I think the issue which is extra scary for me (and I imagine the same for other parents in my position) is that autism is not immediately obvious in our children sometimes. My DS is a very chatty and sociable child (on his terms) and on first meeting him it could o cut to many people he is "normal". Spend any period of time with him though and you can see all is not quite right, he paces, flaps his hands, spins and talks to himself (especially in high stimulus places like supermarkets). He does the same at night and is currently pacing his bedroom, clapping his hands and talking to himself. This can go on until 1am on a bad night. He wakes in the night and needs resettling, he is almost OCD about food and eats me out of house and home in the evenings so we have put a lock on a cupboard to stop him overdoing it. He also has ADHD which he takes medication for and since starting the meds has learned to read.
He goes through furniture like no tomorrow, ditto clothes.
He needs supervision outside as he is impulsive and very distractible, he is not safe by roads.
Clothing - no labels (the usual ASD sensory stuff).
He can't use a knife and fork easily and will eat with his fingers if not supervised.
Washing is daily as he cannot eat without spillage (he is also Dyspraxic)

I don't get HRC despite the night issues and my experience of the system seems to suggest it is hard to get this level for a child on the autistic spectrum. I get MR care and LR mobility (and so I don't get "a free car")!

All in all I am struggling and the Govt want to take away some of the extra amount it gives me which allows me to meet my son's needs while working part time. He benefits from this and do do I.

Currently I have clinical depression, anxiety, IBS and high blood pressure. I am off sick and after Xmas my lease car goes back as the lease is at an end. I don't (and cannot) work enough hours to qualify for a new lease. As my job requires me to visit people in their own homes I will therefore be technically redundant. Having never had to claim benefits in the 30 years since I left school I am thinking about having to do so just as they are planning to make everything more difficult - even for those of us who provide care for others.

I have never been particularly political being fairly MOR but I am despising the current Govt do much. They simply do not give a hoot about us.

.

OP posts:
PersonalClown · 12/12/2011 20:54

Sounds like my DS Dilly.

He's currently reciting the Bob the Builder Cbeebies game at high speed at me. ( don't you just love echolalia).
He flaps, screeches, jumps and hops etc when he's stimming, finger eater too.
Ocd/Overeater too yet skinny as a rake from the constant movement.

He's just gone to bed and I'll be lucky if he stops chatting by midnight.
Its just a constant stream of noise from 6 am till midnight.

survivingwinter · 12/12/2011 20:58

YANBU. It beggars belief that families with disabled children (along with other services for the vulnerable) are being hit so hard.

Yes, there were always going to be cuts but what a place to make them. I can't believe these changes are being discussed and agreed to by a man who knows what having a child with a disability is really like - utterly shocking... oh but I forgot - he has millions in the bank Angry

ApocalypseCheeseToastie · 12/12/2011 21:11

He doesn't have a clue what having a child with a disability is really like, he had a day nanny and a night nanny for him for a start !

PersonalClown · 12/12/2011 21:11

Is it just me or does it seem like those of us that get MRC are the ones being targeted ?

I keep coming back to this idea. HRC/M is safe with CTC (I haven't a clue about UC) but those with MRC are deemed not disabled enough to warrant the help so we get our money cut.

smallwhitecat · 12/12/2011 21:15

This reply has been deleted

Message withdrawn

deepandcrispandsevenfold · 12/12/2011 21:22

the horrid thing is that when I look at threads like these I actually think , oh thank goodness that DD is so disabled....
she gets HR dla, so hopefully won't be affected, I do hope not, she can't walk, talk or care for herself. she will always need a carer always she won't ever work, and sadly her future looks bleak as the government is taking away loads of funding for adult services.
so even if we strike lucky and don't loose money, wtf is the future post 19 going to be like.
I see students whinging about how one day they will have to pay back a debt,
I would love dd to be able to just have that to worry about, rather than a bleak future of .........what?

ApocalypseCheeseToastie · 12/12/2011 21:25

The boy has moved on from eating shower gels and shampoos ( looks like a large portion of his DLA will be spent on safe on the gut stuff for now ) to eating ipad chargers.

Yes ladies, he has eaten his fecking ipad charger ( paid for by a charity btw, he uses it as a communication aid ).

He is now humphing as I bought him one from the pound shop, it has a very short flex and is very slow at charging. He will learn the hard way.

He also eats clothes, paint, glue, nintendo ds chargers, chews batteries, bounces bloody cameras thanks to that STUPID bloody advert with the kid smashing his tap with one ( I should sue ) the list goes on and on.

I still have to keep cleaning stuff locked away ( ended up with a lovely chemical burn on his chin the one time he tried to slurp from a cap of something when I was cleaning the fridge ), and all medicines obv.

He needs constant supervision outside, he always will. He thinks cars look fun to dive under (Penn and Teller, I hate you )

He is ten years old.

And it's damn hard work.

Haven' started listing his autistic sisters issues yet, the almost 13 year old who likes to take teddies with her when we go out because she thinks kids will want to play with her.

She's also having night terrors over starting her periods because she thinks she'll 'get a baby'.

She still can't wash or brush her hair, tie her shoelaces, fasten her buttons, nor is she allowed outside alone becaue she thinks everyone is kind. She's extremely vulnerable.

It's pretty crap tbh.

PersonalClown · 12/12/2011 21:28

Preaching to the choir Cheesy.
Ds wanders across the road without looking because he 'needs' to get where he's going.
He sleeps with a soft Buzz Lightyear. Chews anything and everything except what he's supposed to. His chew of choice at the moment is Lego.

ApocalypseCheeseToastie · 12/12/2011 21:32

Ah yes lego, one can only wonder what that's doing to the guts.

And sticklebricks.......mmmmm.......prickly.

Dawndonnathatchristmasiscoming · 12/12/2011 21:35

As I said before,Apocalypse ds is still doing it, and she's 15. But these are the reasons she can't be left if she's up until one or two, or up at five. She hid some sweets one, in the lavatory brush container that had bleach in it! We also have to keep all windows locked because she still climbs at 15. She feels a strong compulsion to jump. It's terrifying. She too, will just keep eating if left to it, but of course, not fruit or yoghurt, food, yes, but as you say, shower gel, soap, paper, kitchen roll I removed the chewed up loo roll from her mouth not half an hour ago.
The other point is, London taking ASD kids on public transport can be a nightmare, all of mine hate buses with a passion, the noise, the lights, the smells are incredibly overwhelming for them. Same with supermarkets etc.
All my Christmas shopping is done and wrapped because I can't get them anywhere near a shop for the six weeks before Christmas.

PersonalClown · 12/12/2011 21:37

Ds ate the whole tub I bought him as a toddler. He's working his way through the large tub of Lego that is older than he is. My brothers have been banned from handing over their Action Men and other toys stashed in loft.

Oh I forgot. He's on his second Xbox controller as he ate the control sticks off the last one.

OctonautsOnRepeat · 12/12/2011 22:21

Cheese

The changes to tax credits come into force from April next year. We've had our letters.

What letters? I haven't had any. How will I workout what the shortfall will be?
ARe all disabled child tax credits to be scrapped?
I get DLA, CA and tax credit supplement for DS1.Will I loose all of this?

purplewednesday · 12/12/2011 22:22

Sending you all a hug and bloody well done for doing what you do.

Some of my patients want to clain DLA whilst on a treatment that lasts 6 or 12 months and while it does make them feel pretty lousy, it is temporary. And it doesn't make them disabled. I don't think they have any clue what it means.

I am not sympathetic to them.

purplewednesday · 12/12/2011 22:23

And I had no idea that children with ASD eat so many bizarre things!

JinglePosyPerkin · 12/12/2011 22:39

Dilly - you've just described my 14 year old DS.

Octonauts - I haven't had a letter either.

Debs75 · 12/12/2011 22:48

What is all this about letters from tax credits?
We haven't heard anything about any proposed changes and to be honest my head is in the sand about potentially losing £100 plus a month. My tax credits went down £100 a month 4 months ago and we have had to tighten our belts already.

With a DS who is wilfully destructive, self harming and has no awareness of danger. Not to mention appetite like a horse yet looks aneorexic. Extreme phobia of Asda and too disruptive to take on public transport. Still in nappies at almost 13, only sleeping if using melatonin yet often staying awake all night.
Our HR Mobilty and Care is essential, our disabled supplement CTC is essential. We don't use it for jollies, we don't smoke, drink or go out. All our money goes on our kids and helps them to one day escape the sink estate we are living in.

Dp did work before dc4 was born but DS found the extra sibling hard to cope with and he doesn't listen to me so Dp had to leave work. I will be training soon, if the govt don't make it nigh on impossible to support my family, and hopefully working by the time he leaves school. I need a well paid job to surive, if these cuts are made it will be impossible to survive on a NMW job if you have disabled family to care for

TheSecondComing · 12/12/2011 23:02

This reply has been deleted

Message withdrawn at poster's request.

worzelswife · 12/12/2011 23:16

As a disabled person I can remember feeling so relieved when David Cameron became leader of the Tory party (stupid, naive emoticon). I truly thought that because he had a disabled son he would be a decent, kind leader if he ever became pm.

Sad
ouryve · 12/12/2011 23:33

YANBU,

SRSLY :(