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!

Happy...

I would live for you to spend a month in my shoes and see if your 'glass half full/half empty' throw away mark stands.

I can't work due to my disability and other than DLA we receive no other benefits due to my DP pay being just over the threshold.

We can't 'shop' around as you suggest as it is such an effort due to my pain for me to get out of the house and after working 12-15 hour shifts just so that we can make ends meet I wouldn't expect DP to then go and visit numerous shops.

My DLA doesn't fully cover my Physio and therapy needs let alone the equipment etc that I need.

Oh fuck of Chelsy, you'll be demanding everybody enters the paralympics next.
I really cannot stand the attitude that we should all be achieving despite doors being continually shut in our faces, usually by the government.

I think everyone in a wheelchair should be a paraolympian.
I have seen it on the telly. Its easy. If they can do it why can't you?

You just need the right attitude.

And someone without a disability to tell you how to do it.

ha ha at x post

Dd says she'll race you to the beach Devere! ;)

Chelsy'some days my pain is so bad I can not wear a pair of knickers. I live in clothes a size bigger than I need because they hurt to much to wear, most days I wear my pyjamas if I am at home.

I often lay awake all night due to pain. I suffer severe, chronic migraines because I don't sleep enough. I am in severe pain, sometimes it is so bad I cry. Not in front of DH or the kids, they've got enough to worry about.

It's not that I "can't work as I prefer" it's I can't fucking work! And right now, you are one of those people who make me feel even more shit about my existence!

My grandma had a below the knee amputation due to a cancerous tumour. She was 80 at the time but had been very independent and was obviously devastated. People made so many 'jokey' comments about her entering the paralympics, despite the fact that she was very ill post-op and nearly died. Cunts. It wasn't funny.

I am lucky in that DP and myself have managed to keep our relationship going and he earns quite well but at the most I get 4 hours sleep a night as DS2 just does not need sleep even with medication. I am currently under going physio with a possible operation on my neck due to the strain of carrying DS2 We have spent thousands trying to secure a house for him. Having a disabled child has made me ill. The effect of caring is more than just financial. It would be wrong for me to apply for a job as I would not be able to function at a level they deserved and would need to leave constant as sickness and bugs are constant is special schools. Luckily I do ad hoc work at home but like I said we are lucky compared to many.

The thread was about disabled people always being long term poor

That and that if you have a family member who you have caring responsibilities due to their disability, things are hard and it is likely your future job prospects and financial stability will be adversely affected.

ChelsyHandy you banging on about how unfair this thread is to those people with disabilities who have amazing careers, is very much missing the point.

And how much of that is due to negative stereotyping? One of my former colleagues was registered blind, and did an excellent and rather well paid job. Its hardly unknown. I really cannot stand the attitude that ambition and prospects should be stifled because some people think its too difficult.

This is a really naive comment. I am please for your friend I really am, however 'life really ain't that simple'

I take well over 20 pain killing tablets a day, can't walk, can't sit for long periods of time and find it hard to lie down.

I am constantly tiered but can't sleep.

I used to have ambition before my illness started, but forgive me for the moment for just struggling to survive!!!!

Chelsy - this thread is about how much harder it is to work and stay out of poverty when your life is affected by disability. This is true. The fact that some people with disabilities do very well is irrelevant.

I can't work in a regular job with an actual employer because my son needs too much care - I wouldn't employ me if I was an employer because I have too many other responsibilities to be a good employee. That's why I run my own business and only let myself down.

Society has certain expectations of disabled people if they are to be accepted.

Be meek and humble and always, always grateful.
Be noble, be brave, be a battler.
We now have a brand new, shiny category
Be big, be tattooed, be hunky, be male, be an ex serviceman, win medals.

Anything else and you just aint doing it right.

As illustrated by some of the faragwitted posts on this thread.

I expect Chelsy's blind colleague also had extra sensitive hearing to make up for her visual impairment. Because that is a real thing you know.
I read it somewhere.

The Daily Mail perhaps Devere?

It saddens me there are so many families in our situation. We have two dds and a two year old ds. Ds is undergoing autism assessment, not to find out yes or no but to get an idea of severity. Dh has a fairly low paid but secure job with pension paid by employer, 6 months full sick pay, etc. I had a relatively well paid job (teaching) which I left when pregnant. I had got work lined up on supply which I had to turn down due to childcare issues.
Ds has 10 hours funded nursery care but 1:1 funding only covers 6 hours a week. Nursery can't cope without 1:1 because Ds has no speech, no understanding of speech and extremely challenging tantrums due to frustration. Childminders can't take him on due to him needing 1:1 care. He has two autism groups we attend weekly, a 70 mile round trip each time. Hospital visits are frequent, some weeks three a week. Occupational health has a 20 week waiting list, speech therapy six months. We've applied for dla but the money will just get swallowed up on petrol so how we will fund private therapy I worry about.

I would love to work, just to be comfortable again. Not to worry about the car breaking down, our son needing equipment or something else we can't afford to provide. I don't see an end to it. If dh left work to enable me to do so, I'd be on temp contract with no job security. Low paid jobs in pubs etc leave us no better off as council tax benefit, tax credits etc just get readjustment. I hate feeling so helpless.

I have one disabled child. DP and I both work. We are fairly well off. We get middle rate DLA, higher rate mobility but no other benefits including child benefit as our income is too high.

Our swimming costs the same as for our NT son. We use a regular daycare.

I do have understanding employers.

I think it depends on the nature of the disability.

Devere I expect Chelsy's blind colleague also had extra sensitive hearing to make up for her visual impairment. Because that is a real thing you know. I read it somewhere

Oh Jesus Christ. Do you think registered blindness means being unable to see anything at all? Or do nothing? The man was also a successful athlete, with a guide runner. I suppose that doesn't exist either. Or have you heard that all disabled athletes are just like Oscar Pistorius?

Why are there never any threads on mumsnet about how much disabled people can do? And why the bitter criticism of anyone who has the temerity to speak out about it and criticise offensive stereotyping?

Chelsy, no one is even suggesting stifling ambition and prospects. Statistics are exactly that.

Happymummy: perhaps of you had a 14 year old who can't speak, has the mental age of a two year old, needs nappies changing, doesn't sleep for more than a few hours a night, goes to school 10 miles away and needs you to get him there and back each day, is an inpatient at hospital very regularly you might not be such a happy oblivious judgemental mummy. You would probably be a tired overworked worried mummy who tries to get some sleep during the few hours between school runs.

Maybe posters are coming across as bitter because you are making people feel like shit, Chelsy!

This is like watching a re-run of 1979 anti-feminist blather.

"We have a female prime minister, so you mustn't discuss childcare, biased access to education and jobs, societal expectations and unequal pay, which statistically have a huge affect on the lives of women. It's not helpful, you know."

This thread - this particular thread - is about the fact that statistically, families dealing with a disability are more likely to be poor.

If you want to see me drivelling on about reasonable adjustments for working disabled people, Chelsy, you can find me all over MN. But this thread is about the flip side of that - when an employer refuses adjustments, or the adjustment is expensive and cuts into earnings, or when no enabling adjustment is possible, or no employer can be arsed to hire a disabled person in the first place when they're spoilt for candidates.

And yes, thanks, I am allowed to talk about that.

I beg Chelsys colleague also didn't need somebody to change his adult sized nappy, somebody to facilitate his non verbal communication, somebody to stop him running in the road, somebody to cut up his good and feed him. Not all people with disabilities can even consider any type of job no matter how basic or accommodating.

I suppose I should go wake my husband up and tell him that we should really pull ourselves together and get a "glass half full attitude". After all I must have been really unreasonable to take unpaid leave to look after him and as for him finally signing the papers that say he is no longer working for the company that he was with for 12 yrs. We're really fucking rolling in it now with all the benefits we get compared to both working full time! We just have to pull our selves together and ignore his terminal cancer. Fucking light weights that we are! Dicks!

"The man was also a successful athlete, with a guide runner. "

Well, yes, exactly. You've just proved the point that it costs more to be disabled.

Which is where we came in.

Plenty of poor people are not disabled
But plenty of disabled people are poor.

I'm uncomfortable with disabled people being stigmatised. I'm also uncomfortable with an over-eagnerness to label people as disabled.

It's not the label that stigmatises them, it's the disability. The fact that you see labels, is a stigma in itself.

Yes of course some disabled people can work and make a very good living, but they are the minority. The vast majority find it very hard to earn a decent living. It is significantly harder to find work and achieve the same levels of success. I speak as a person with a disability who has always worked in some way, but I recognise that I have been very fortunate and the barriers have been huge.

And as for HappyMummy's notion about juggling, you have not got a CLUE how difficult it is. Just because you have seen someone do it, it doesn't mean everyone can. Being at home when your disabled child/children are at school, is not a luxury when you have been awake with them for 4 hours during the night (every night, 7 days a week) and have 3 times the amount of laundry to do as an average family. And that's before you contemplate how the hell you are supposed to find childcare for the holidays!!

And your figures are just crap!
A quick google shows on a modest rent of £85 a week, with two children and one on lowest rate of DLA the net amount for HB, CTC, CB and CA is £19000.
On the lowest rate of DLA, there would be no CA and no increase in CTC. A family who weren't renting get no HB, and everyone under 50K gets CB, so there is NO additional income beyond the low rate DLA, for that family, despite their additional expenses for having a child with a disability, undoubtedly being greater than the £20 or so they get a week in DLA