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!

I know what you mean, it's sort of the quandary a lot of people with small children find themselves in - childcare cheaper than working sort of thing, but obviously someone with a disability won't become more independent. I'm sorry for your predicament OP

It all depends on circumstances. We have two dc with sn and have a higher income than most of our friends as a result, dp works full time on minimum wage and I stay at home with the dcs.

However I was a SAHM already, low mortgage etc so.didnt have to give up work.

I won't reveal our income as the 'disabled are raking it' in ' brigade will be out in force, but we do ok. And certainly don't live in.poverty. The same goes for my friends in the.same.position.

It's very different for disabled adults tho, income drops a lot and most charity help stops at 18 because disabled adults don't have the.cute kid factor. For some reason.

Yep. It's shit.

There are even fancy-pants studies showing that people with disabilities severe enough to inhibit work tend to be a) poorer and b) more likely to die also that bears shit in woods and Pope is Catholic.

Recent govt solution to these terrible problems has been... to tell disabled people they should get better and go back to work!

Genius, eh?

Sorry to be facetious, OP. But you're spot on, and I'm pissed off with the surprise this obvious state of affairs seems to generate among the powers that be.

It's even worse for families where the level of care the disabled person needs prevents other family members working.

Happy mummy it's DLA no V that the driving people

DVLA

HappyMummy, you have excelled yourself.

at this ^

It is so much more expense with a child with disabilitys people that haven't coped with it do not understand at all.

We were ok once we got benefits but my brother is disabled and outside the safety net (brain and mental health so invisible). He is and will always be supported by family not government so, yes, his family are poorer

HappyMummy people with disabled children often have to attend medical appointments during school/office hours. And also having to rely on an overworked understaffed NHS. Also the way it is now employers can pick and choose. And if you were/are an employer I bet you wouldn't pick the parent of a disabled and/or ill child over a potential employee who hasn't got that commitment.
Because I often find that most of the haters don't want to put their money where their mouth is!

iPad auto corrected it lol well that's what I'm going with!

Darkesteyes, having worked with two people who juggle children needing medical appointments it can be done.

If I were an employer, it's the persons work ethic I'd be looking for. Swapping hours or using holidays, unpaid leave is fine if they are good workers. People who take sick days for a sniffle or after a night out etc, don't pull their weight etc are the ones employers tend to want to avoid.

Thing is Happymummy, some parents of disabled children are lone parents!

I am a lone parent and my child is at school, I still can't work! It's not as cut and dried as you think it is but then given some of your other posts on disability related topics I'm not that surprised :/

You generally need some form of start up funds and skills to go self employed, which a lot of people don't have.

It's very likely that my ds will never be able to work, he very likely will be dependent on me or someone else for life.

I remember when the chief exec of Next was on Question Time a couple of years ago. He was spouting off the "disabled are raking it in and should work rhetoric"
Not one panel member thought to ask him what the Next policy is on employing disabled people or carers!

HappyMummy Carers shouldn't have to use their holidays Not under the Equality Act 2010.

And many carers cant afford unpaid leave.

Ha happy mum should have known that post was from you, you really don't have a clue do you in your little bubble.

Ah, but his income will depend on whether he's a cheerie sort or not, extremepie. HappyMummy says so.

Depends if you are a glass half full or half empty.
Deluded as always, Happy.
My Dh is unable to work anymore. In fact he can't even get to the lavatory without help. Check out how much we'll be getting when we're on benefits, my glass isn't half full, or half empty, it's smashed to pieces in a corner somewhere and this oh so delightful government is making it worse.

Im gonna have a moan. I know there are people worse off than me though :(

DH isnt entitled to carers allowance for me as he earns "too much" He works 12 hour shifts, while he's out we just about cope by doing nothing. I cant really shower or cook on my own, everything i do with the kids while he's out is me making do. The council have provided an allocation for me for a pt carer, but i cant find anyone that can work around dhs shifts. Then when dh is home, he does everything for me and the kids. It is killing my marriage, and my poor husband. He does it, because he wants to, but his health is affected, he is knackered and he gets nothing. If he left me, I'd have a full time carer paid for, but we'd both be financially (and emotionally!) worse off. If he quit work, he'd still have to look after me and the boys, but without having to try to work night shifts around us, but again we'd be financially worse off, and we're not doing well as it is.

Thats without mentioning how much of our money goes towards things other people dont need to buy. And all of the "start up costs" to becoming disabled as an adult, things i hadnt planned for. The fact that i need to replace loads of clothes because i cant pull up skinny jeans or do up buttons or stiff zips. And that was before i put on a load of weight cause i couldnt move, and then needed bigger clothes. Need to use pull ups with my ds2 because i dont have the power in my arms to fight with a nappy and a toddler. My house is a tip, because i cant clean it up and cant afford a cleaner, and dh is either working, or cooking, or washing the load of dishes that grew while he wasnt here, so he has no chance to get on top of the mess either.

Everything is hard work. Schools dont allow for the fact that i cant walk when applying for the boys, so ds1 has ended up missing a lot of nursery. And when he does go, i have to pay bus fare both ways, and the bus stop is too far from the nursery and i'm in shitloads of pain when i get there. I'm waiting for a wheelchair btw, do have a mobility scooter but as im also still waiting for OT, i have no ramps to get it out of the house.

Everyone has different expectations and outlooks on life. Depends if you are a glass half full or half empty

There you go folks!

It all comes down to whether or not you are a positive sort.

Happymummyofone. Clueless as ever.

HappyMummy doesn't matter whether the glass is half full or half empty, unless the contents are leg fixing juice, it's not going to help my dad work, or even walk properly, and until then, my mum can't work either.

I am a lone parent of a disabled child.
I have worked (i have a degree in nursing). I had to give up work for the second time in october because of DS's disabilty.

I would love to work and i do have a glass half full outlook , however its pretty difficult to find the hours i can do.

DS can not go into childcare because no childminders will have him - i have tried. I put him in a private after school club but he got kicked out.

My last job i worked 9.30-2.30 term time so i could do the school run. However the difficulties came when i had to attend meetings, appointments and when i had to pick him up when he got excluded a few times. It was then very difficult to make back up the time. I have no family nearby to have him.

He is now in a specialist school so the school run is no longer a problem but trying to find a term time job is like getting blood out of a stone, even with all my positivity glowing brightly!

I'm only slightly less better off on benefits than i am working but i've always had a good work ethic which is why i'm desperate to get another job.

Yes, I do think it means a very high risk of long term poverty.

No chance of working outside the home for me in the foreseeable future. I got very upset on a recent thread when I mentioned I was in the process of retraining so that I can try and work from the home at least part time & got sneered at for it. I'd really so much rather be constantly struggling & socially isolated than in my old really stimulating 40% tax bracket role as I was before DS hit school age ffs . People just don't think about how hurtful they are being.

Avoiding repossession ultimately meant relocating to a dirt cheap part of the country, so while I'm now secure at last, I've also missed out the London property boom. My chances of a decent pension have also evaporated into thin air. I've also lost what little informal support network I did have and have no childcare to cover my smear test appointment or dental check ups.(It's the little things like this that get to you long term). Paid childcare is unavailable.

DLA covers some, but not all of DS's basic therapy, educational, and additional domestic & transport costs. Legal aid to access educational services has been cut, and we all know the NHS is overstretched so I see no prospect of improvement on that front. This is before you take into account his restricted access to leisure activities other kids can take for granted. DLA is not a blank cheque & it does not replace my lost earning capacity.

It's not just financial poverty, it's poverty of opportunity.

I'm one of the lucky ones. DD1's appointments pretty much disappeared once she started school because all therapies are included in the school day (special school).

I still have to be at home at 8.30 and 16.00 because her school bus will only deliver her to her home address, though.

I was a nurse pre-dc. I thought I'd get my registration back. But I can't because the return to practice course requires that you can do all shift patterns. I can't do nights -have to be there until 8 am and DH leaves for work at 6.45am. I can't do earlies - DD1'S bus will only pick her up from her home address. I can't do lates - DD1'S bus will only deliver her to her home address.

That, of course, doesn't even consider if a child carer will take on a child with additional needs who needs constant supervision.

thats a good point bochead everything costs more.

1:1 for swimming lessons, 1:1 for childcare, paying extra for a carer to some to places as they don't always get in for free anymore.

I spend a fortune on chewellry, adapted cutlery etc.

If you want the best therapies you have to pay for them. The NHS doesn't provide nowhere near what some of these kids need. DS was discharged by NHS OT despite needing ongoing sensory diet and work on fine motor skills because he needs above and beyond what the NHS can offer. He gets some support with this in his special school as they have their own OT but if i want the best therapy for him i will have to pay myself for a private OT.

Also because i don't work we are stuck in a rented house with damp. I can afford a better rented house but not many landlords take families on benefits so i am trapped here.

I'm kind of uncomfortable with this post, because although I'm sure its not your intention, it kind of promotes a view that disabled people don't or cannot work. Whereas in reality in my family there are two disabled people who work, and at my workplace, you would be quite hard pushed to find people beyond the age of 40 who don't have some kind of physical or mental impairment that in another person would make them unable to work. There is a lady who uses a wheelchair, another who walks with the aid of sticks, at least two people with medicated MH issues, several with varying degrees of depression, a deaf person and a person with epilepsy. I myself am waiting on an operation on my back and have a permanently numb leg due to nerve damage and walk with a limp. Its not a big workplace either.

So, no, I wouldn't say so or agree with you. Plenty of poor people are not disabled.