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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that a lot of the time having someone in the family with a disability does mean being long term poor?

575 replies

extremepie · 31/05/2014 14:06

Obviously this is not the case for everyone but it certainly is for me!

I know that families with a disabled member do get extra help in the form of extra tax credits, DLA, carer's allowance ha! etc but aibu to think that due to the often extra expenses that are incurred by having someone with a disability in the family all this doesn't go as far as you might think?

Due to my current circumstances, I am not able to work and I can't see this changing in the near to moderate future unless something drastically changes. This is not unusual, as a lot of us just can't work around all the medical appointments, time off required to look after them etc so working is just not feasible but I hate the idea that this current situation is all I have to look forward to in the future and that my financial situation will not really improve :(

Aibu to think I'm not alone in this and that for a lot of people having to manage the needs to someone with a disability means they are struggle in the long term? In most circumstances if your money situation is tight you can either try and earn more money or cut your expenses but often people with a disabled family member can't do either!

OP posts:
extremepie · 01/06/2014 12:24

Calmet - noooo I don't think that way at all! I have a disabled ds myself and I wish we got handouts! it would make life a hell of a lot easier!

Actually no, I don't want handouts, I just want the opportunity for myself and both of my sons to access a 'normal' life, to have full time appropriate education, to have the same opportunities as everyone else, to have the option of going out to work and earning a living to support my family like thousands and millions of other people do.

I want the opportunity to improve my financial situation if I am struggling by retraining, getting a better job, working more hours etc so I can give my sons the things they deserve, things that I had as a child like family holidays and days out.

Unfortunately it's not possible at the moment :(

Obviously this is not the case for all disabled people/carers but it is the reality for a lot of people because of the extra challenges in being disabled or having to care for someone who is, I just don't understand how some posters fail to grasp that! Although I think in some cases people just don't want to understand they just want to blame!

OP posts:
Smilesandpiles · 01/06/2014 12:24

No idea.

twittymummyofnone · 01/06/2014 12:26

Just popping back to clarify that I am not HMOO Smile

Owllady · 01/06/2014 12:32

I can't cope with reading the thread if extremepie justification is to go by!

I am a bit further along the road I think than some of you but I honestly really don't give a shit anymore what narrow minded people think of me. My ability to work in paid employment is impossible, despite laws in place the carers act does not enable or support carers to work. Social services don't have the budget to even do that. Anyone who can't use their imagination enough to grasp how someone's life might be, either domestically or financially doesn't deserve a reaction or explanation quite frankly

SoonToBeSix · 01/06/2014 12:44

Beyond if you claim tax credits please put the actual amount earned as shown on your dh p60. Tax credits works on the previous years earnings so there is no way you could be accused of any fraud.

extremepie · 01/06/2014 12:50

Also, I wonder how much difference it would make to families if DLA was means tested? Not as in you have to be on a certain income to get it but if, say you had a child that had physical therapy needs, or severe medical needs etc, it's reasonable to think that you would have more costs than, say, a child like my ds who has severe mental disabilities but is physically healthy?

I mean, I know that's what the high rate/low rate is for but my son receives high rate due to his mental disabilities yet I can imagine if he has physical problems as well the DLA would cover even less of his extra costs - maybe you could produce an rough breakdown of costs incurred by the person claiming's disabilities (respite, childcare, equipment, transport etc) and it could be adjusted accordingly? What do you think?

It seems unfair to me, and I think this is one of the reasons of starting this thread, that people who have been unfortunate enough to have a disability or who have to care for someone who does, are often not able to enjoy the same standard of living that people who don't have that challenge, not because they can't be bothered to work for what they want but because they physically can't do it for one reason or another?

I'll use the holiday example as I can't think of a better one right now :D me and my boys have never been on a family holiday, partly because I can't afford it and partly because I couldn't do a lot of the things you might do on holiday without a second person to help (swimming etc) - it seems unfair that my sons will have to miss out of stuff like that because I can't go to work because of ds's disability.

And it extends to lots of things, days out, hobbies, living in the property/area you want etc. If I was in a situation with 2 nt children and I couldn't afford these things I could get a job or work more hours but in my current situation I can't and I hate that my boys have to miss out because of it :(

I'm not suggesting that people with disabilities/carers should just get handouts to help them live in the lap of luxury but is it unreasonable to feel annoyed that the majority of disabled people/carers are put in a situation where they can only afford the basics in life, to scrape by knowing that they are only one stopped benefit away from being able to eat or pay their rent?

I guess what I'd love to see more than anything was the government facilitating those with disabilities/carers in being able to work and support themselves, taking into consideration all those things that we have to when looking for work rather than just stopping benefits as an 'incentive' to go back to work, which doesn't help at all if the reason you're not working in the first place is because you can't get childcare :/

OP posts:
extremepie · 01/06/2014 12:53

Wait, hang on owl lady, what do you mean? What justification? I'm on your side! Don't lump me in with HMOO!

OP posts:
Smilesandpiles · 01/06/2014 12:55

Owllady didn't lump you in with that.

She ment that because you are having to explain yet again why you posted your OP, she has a bloody good idea what happened on the thread and had no need to read it. She wan't accusing you of anything.

sashh · 01/06/2014 13:04

Good point purple. I doubt David Cameron is worried about the extra cost of having a disabled child.

Nope and he wasn't forced to move when his child passed away.

I think Cameron is worse than someone who is just ignorant, he knows the extra costs both financial and other of having a disabled child.

Smilesandpiles · 01/06/2014 13:06

No he doesn't. It was reported that he didn't even know how many nappies his son went though - let alone that what they were allocated wasn't enough. I'd be very surprised if he knew of the costs, let alone those costs relating to an income that an average carer gets.

LuisSuarezTeeth · 01/06/2014 13:09

It's high time this poster was called out about her twattery. Hats off to everyone and so sorry to everyone affected. Thanks

Smilesandpiles · 01/06/2014 13:11

There's another thread in Site stuff that is arguing just that.

Some of us have no trouble calling a twat a twat.

Owllady · 01/06/2014 13:17

What smilesandpiles said extremepie. I feel sad you have to explain to people, I understand why you do though.

Wrt disability, I think how dla works is quite fair really. It doesn't cover our laundry and electric costs though :o and as I said before, if people can't use their imagination to how little dla actually covers they are living a rather narrow version of life. Dla helps, so does qualifying for a motobility car but the reality is financially very difficult for most families I imagine, whether they are able to work or not. If people think being a carer is an easy life is deluded :) go and read carers UK, there are some simple, straightforward explanations of the daily struggles that families like mine face.

linkery · 01/06/2014 13:18

Having read some of Chelseys posts better.
It is funny not that people are expected to think of her as not so disabled so as not to offend her, but she doesnt have to think about disabled people who are much more disabled than her, and think about what that must be like.

extremepie · 01/06/2014 13:23

Oh ok smiles, phew!

OP posts:
Deverethemuzzler · 01/06/2014 13:27

please don't call them 'handouts' though.
Even if you are just repeating someone else's term.

A handout just whizzes us to the charity model of disability and all that entails. Handouts is never used in a positive way.

mytwoblackandwhitecats · 01/06/2014 13:41

Extremepie - when my mum had cancer, it cost a fortune in visiting her in hospital which was several miles from where we lived, and parking.

My dad was a deputy headteacher so while we were never extremely wealthy we were certainly very comfortable and also he had compassionate (paid) leave from work.

I have now been in the position where my dad died very suddenly. Funeral costs have crippled me and I'm not badly off compared to some.

It's frightening.

hellokittymania · 01/06/2014 13:54

Link, it's hard for me to think of how life is for V and N,or my friends from school, even though I spend lots of time with them Hey're my friends, period. We have all been bullied, I know it but I don't know if V and N are aware of it. They have AO quire badly.

I don't know if you can understand what I mean. But sometimes I forget that they won't ever work,

PartialFancy · 01/06/2014 14:32

"I think Cameron is worse than someone who is just ignorant, he knows the extra costs both financial and other of having a disabled child."

This.

He is presiding over cuts to carers' support, by moving the thresholds.

But he knows. It isn't just numbers on a screen to him. He knows the (wo)manpower it took to care for his son, and what hours Ivan couldn't be left unattended.

And he's still removing Carers Allowance from many families.

There is a very warm place in hell reserved for this man.

squirrel996 · 01/06/2014 14:33

I am disabled and also a sahm with 2 children, my dh has a good job (high rate tax payer) I also get ESA and DLA which adds up to probably what I would earn if I worked part time. However my dh is constantly moaning about money and the fact that I don't earn any! Even though I've explained to him time and time again that I do actually get money which is a lot more than I would get if I was a sahm.
We were very lucky that when I had to stop work 4 years ago he got a big promotion at work and a big pay rise which was more than I earned in the first place! And I had to sell my horse so we didn't have that massive expense any more.

Smilesandpiles · 01/06/2014 14:33

Wait, what?

Removing carers allowance...where have the goal posts been moved to this time?

PartialFancy · 01/06/2014 14:34

Don't panic! I'm talking about the most recent change - I don't know of any new ones coming up.

Smilesandpiles · 01/06/2014 14:35

I'm not panicing. I just haven't heard of this one.

What was the change?

Owllady · 01/06/2014 14:36

I disagree that he understands the financial and domestic arrangements of most parent carer families actually, how could he?

I agree he would understand the emotional impact though.

Those who are talking about carer assessments too, do you know how many hours you get allocated as a carers break per month if you have a very severely child and no other support? It's an hour a week. Life of Riley huh?

PartialFancy · 01/06/2014 14:38

OK, I'm looking up my old material on this...

Swipe left for the next trending thread