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

[extremepie]

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!

Sorry bold doesn't seem to be working

Sole I've been attacked on here and in RL for the same thing and the car was damaged.

Completely sympathise, but you've got to just tell yourself they're the fuckwits and not the majority view.

Who are these poor hard-of-thinking people who think motability cars are dealt out to people who don't need them?

Yes lefty, the evil cow next door used to burst my tyres!!! She let her DD's friends scratch all over the windows and the paintwork!!

"Who are these poor hard-of-thinking people who think motability cars are dealt out to people who don't need them?"

My neighbour for one. Although she did actually listen when I explained that:

a) usually it's either the money or the car, not both.

b) you have to have higher rate mobility for it
c) we don't qualify.

I just wish the other side would keep his fucking nose out and his comments to himself.

Sole - MN is my support group too so I get where you're coming from.

Jeez some people!

Yep. Mine had a dent put in it and damage to the paintwork.
My then 3 year old DD was in the car with me at the time.

Sole you and your son totally deserve that car.

And why the fuck aren't these incidents of harassment, vandalism and criminal damage treated as hate crimes. Because that's what they are.

IMO we are now at the same stage with disabilism as we were with racism pre the 1976 Race Relations Act. ( the powers that be not taking it seriously) Even my spellcheck has put a red squiggly line under the word disabilism.

MN's made a decision on that other thread.

It's a fucking doozy.

That's horrible!

If your son lived alone, Sole, I wonder if people would still be so stupid? Then again maybe they would!

I remember a few years ago in Thailand, the head of immigration let me jump the queu. The immi building is massive and the motorbike taxi driver came in with me. I mentioned it on a forum and someone said "My parents taught me to wait in line." I said well next time he can bring me and wait in line for 3 hours if he has a problem!

My mum gets a hard time for "not looking after me" and when I lived at home people said I was lucky I wouldn't need to work, blah blah blah. I was spoiled etc.

That's so stupid hellokitty, as if you chose to be disabled? I'm sure every person who either has a disability or looks after someone who does would swap every penny of every benefit they would or could ever receive for the chance to live a regular life. I know I would!

Yes it so 'spoiled' to have someone take care of the things you are not able to do for yourself! As if you're lucky to be disabled! Would they want to swap places with you, since you 'have it so easy'? No, they wouldn't!

Some people are such idiots!

Yy to that!

Darkest I reported mine as a disability hate crime. Sussex Police refused to act despite me having photographic and CCTV evidence because it took place in a supermarket car park and apparently they can't prosecute a crime committed on private property.

So if you want to beat someone up, rape or murder them do it on private property, folks.

What bullshit.

I was just looking at FB and a friend with a disability said she tried to open the stall door and a voice asked her if she was a "f&$)$&g retard"....

Of course none of the other stalls were occupied and that person in disabled toilet did NOT have a disability!

Nice

m.smh.com.au/federal-politics/political-opinion/people-with-disabilities-need-a-champion-that-understands-their-lives-20140530-398gi.html

I hope none of you live in Oz. That's crazy....

Solesource x

That is shit Lefty

It proves the point I made in my last post.

IMO we are now at the same stage with disabilism as we were with racism pre the 1976 Race Relations Act. ( the powers that be not taking it seriously) Even my spellcheck has put a red squiggly line under the word disabilism

Some really sad stories here, but also so much bravery. Have been reading the thread on and off since Sunday and finally finished.

We are lucky as DH is a high earner, but when I decided not to go back to work when DS2 was diagnosed with ASD aged 3, (hadn't gone back before as he had a heart condition too) it was still a struggle financially (living in London with certain fixed costs eg mortgage).

Yes, we got DLA and CA, but it wasn't a patch on what my previous earnings were, so yes, we did still suffer financially. It is a real lifeline for me though - especially as DH was in denial about the diagnosis so didn't believe that DS2's needs were too great for me to get permanent work - big strain on our marriage, lots of arguments about money, so it was good to have some regular income.

I do try and work freelance, but most contracts that come up are full time and so not viable with all his appointments, therapy sessions (alot of which I do myself at home; also there are three regular OT/SALT etc appointments a week which of course are during working hours) school meetings, etc. Not to mention all the logistics/time of Statementing process - thankfully got band 6 but it was alot of work. Plus the emotional support he needs - we are attempting mainstream but it's hard for him and he very much needs me around to help him through it. And somewhere I need to find time for the other DC too.

Yes, who on earth wouldn't swap the benefits to have a healthy NT child??

ChoosandChips same here with my ds. Can't go back to work. It was hard as was going to go back and husband initially didn't understand.

It's so hard x

wildcat - yes it's tough, it has taken us a good couple of years to get through rough patch and it's still difficult - DH is now finally coming to terms with it (DSs needs/differences are so much more obvious compared to his peers now) - we were so strong together going through the heart surgery, but somehow completely conflicted over this - I guess he's too practical - there's no fix/timeframe/one way for ASD and you can't see it. I still haven't quite forgiven him for leaving me to do it all alone when I most needed him, but we're getting there.

I am so grateful for the support on here. So many people are being so brave struggling with so much worse shit than I have to deal with. Ignoring the MiseryMummyofOne types can be difficult sometimes - it's really upsetting to hear that stuff, especially when ones getting it RL too. Have had to develop a thick hide.

Oops I meant wirecat sorry, autocorrect!

I was thinking about this thread today, after hearing an update on the orogress of health insurance in the US, and wondered whether companies could offer insurance for children before they're born, in order to help families deal with the massive cost implications of having a disabled family member. I was thinking of insurance that would cover costs of lost parental income, travel requirements, additional costs, and so on. But would anyone be interested in buying it?

Happymummyofone would

Just seen this article. IF its implemented its going to make things worse

www.telegraph.co.uk/health/healthnews/10870787/NHS-patients-could-be-forced-to-pay-bed-and-board.html