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!

Disability puts limits on everything. What you can do, what you can afford... And just to make it even better, everything is a fight- as if the normal day to day stuff isn't enough.

Even the things supposedly there to help, like Motability, in reality have another side- who can afford a deposit (that can be up to £40,000 and will definitely be over £4000) every 5 years? Everyone is out to make money out of your disability- from wheelchair tyres, to raised toilet seats... everything is more expensive when you really need it to do something basic.

We all take not knowing how hard it is, having the luxury of being able to work or even just something simple like run up the stairs or nip out for 5 minutes to the shop, for granted, until something changes and it's taken away.

My dh is disabled. We're setting up as self-employed, don't really have another option. We're very fortunate to have been able to obtain a small amount of funding and already have equipment from a previous small business, we've been waiting for a long time for household adaptations to be set in place, meaning dh is able to get around easier. Small things are life changing. We have plans for the future and I know we are very lucky, to be able to do that- to look forward to changing our lives and take control back again, not feel trapped by it quite so much.

disabledparentsnetwork.org.uk/contact/
this organisation helped me get direct payments etc

Chelsy, I'm quite uncomfortable with your post...

"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"

Do you realise how that sounds? Not a lot better than the "glass half empty" post upthread. I'm sure that isnt what you meant though.

Washing for one child when the washing machine breaks down at the launderette - £35 per week. Caring Cutlery, special pencils, laptop, writing slope, seat cushions, therapy equipment, furniture breakages (DS has got thru 2 bed bases in 3 months), taxi's cos he's too nervous to get the bus for essential medical appointments. 1:1 for any leisure activities like after school club that's totally free for everyone else. It all adds up and faster than you'd think.

I'll stay away from mentioning health or education in case I lose my rag.

BeyondTheLimits I'll make it clearer. I'm uncomfortable with disabled people being stigmatised. I'm also uncomfortable with an over-eagnerness to label people as disabled.

Chelsy the fact is that the extra costs of disability are likely to result in you being poorer than the average. As was stated upthread, there have been studies demonstrating this quite clearly.

As for an over-eagerness to label people as disabled, well, what on earth do you mean by it?

I have a disabled .child and my husband has just lost his job because of an illness .he is in and out of hospital .our income is half .but what makes me really sad is I had to give up my job .10hrs per week minimum wage.not much but it is the company I miss most .people think oh you don,t work .they don't see my autistic son or my seriously mentally ill husband .I mean I am just everyones carer .my hubby worked the same job for 30 years and he hates it on benefits .but he has no bloody memory .so who would employ him

It depends on the disability and the severity of the disability.

Many adults with certain disabilities are fully independent, or nearly. On the other hand, there are people who still live at home for one reason or another.

As an adult with a disability, I work abroad and am very good at some things, awful at others. I still can't really cook and I ask my mum to help with applying for visas, booking hotels, etc. I know my mum would let me live with her rent free if I moved back to Florida, but I don't want to be a burden to her (she's 68). I also don't like it when people think my mother has to care of me.... That really gets to me. I can do much more than people expect.

As a child, my parents weren't around much. Both work in the Cayman aIslands (hospitality, not banking!) and I was left with my sisters who are both much older. At 12, I went to a residential school. I mainstreamed in 12th grade and my sister or a friend would be there.

It is true that technology/transport etc cost more and many adults with disabilities are on DLA/SSI, etc. Nearly all of my friends have iphones, some money to go out, etc. If they need a $5,000 piece of equipment.... very tough.

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

Yes, damn labels for disabled people. Let's not label people who have disabilities and let them not be protected by law.

I'm more uncomfortable with people being labelled as scroungers, lazy etc, etc when the people I know have to try so, so hard to achieve stuff others just take for granted.

I've also noticed that those who seem keenest at labeling others scroungers, disruptive, naughty, lazy etc, etc always seem to be first in the queue for the free buffet at social events themselves (never mind if they have to elbow the person with the walking stick out of the way to get to it!).

It's the poverty of opportunity that upsets me most - starting with access to an adequate state education. (Without that we all know adult work opportunities will be limited not taking into account any other single factor).

Candycoated, I think she meant don't lump blind, deaf, cp, autism etc in the same category. Every person, family, disability is different.

A simple example:

DD1 wanted to do gymnastics. But she'd need a 1:1. fortunately, we get 4 hrs per week 'respite' and the carer allocated to us for 2 of those hrs used to be an elite gymnast and is a coach at the club DD3 goes to.

Each week the carer picks DD1 up, takes her to the club and coaches her, then brings her home. It costs us the normal club fee (£6) plus £7.50 for mileage. If we didn't have the SS hours, it would also cost us £40 for the carer hours.

It all adds up.

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.

I fall into that group, and I consider myself bloody lucky to be in that group.

I'm lucky enough to have a job from which they'd struggle to fire me. If I lost that job, I would be very unlikely to find another. As it is, I want to leave, but can't because there is nowhere that I know that would be as accommodating as my current job.

Last year I had a spell of seven weeks off. I returned on a phased return. Since then I've had to have another solid week off, and a day or two off per month for about 8 months. It's only in the past 2 months that I've changed medication and it's working for me better side-effect wise. However, having changed the medication, I'm continually at risk of relapse. I had to attend therapy which meant leaving early one day a week for 20 weeks. I have to see a psychiatrist once a month, which has to happen during the school day (I can't take my kids with me), so hits work time.

I'm not exactly adored there. I'm aware I'm a crap employee (well, I'm brilliant when I'm actually there doing my job, but nobody, including me, knows whether I'll be there from day to day - like I say, it's only in the past two months that I've been vaguely reliable), I'm aware that this has a knock on effect to colleagues. I constantly wish things were different (not just because it's not nice being bipolar) but wishing isn't going to do anything, so instead its constant work just to be well enough for work. The fact that I'm well enough for work often means that I'm not well enough for the children, so they miss out.

Basically, I'm nobody's bargain, and there's no way I'll get another job with my sick record, particularly not in this economy.

Like I say, I consider myself exceptionally lucky to have a job that's flexible enough to accommodate me. I'm grateful for their work. I'm grateful that it's public sector so shit-hot on equality and diversity, so I'm protected from snide comments (I still get them, but it's comforting to know I could report them and they would be stopped. Mostly I just roll my eyes - the one time it crossed into proper bullying, I made a noise.)

I don't qualify for any kind of disability benefit. This is fine - I don't need it nearly as much as other people do, but if I lose my job, I'll be surviving on jobseekers, and unlikely to ever be out of that situation.

So yes, some disabled people are lucky enough to find work. I suspect that those of us for whom the planets align and find that there is a job that we can physically (or mentally) manage, in a workplace that will be accommodating to our needs, are in a tiny minority.

But she didnt say they are different, she said "some kind of impairment" that in another person that same impairment "would make them unable to work". That is calling those who dont work, with the same problem, lazy.

Bet one of those over forties has arthritis in their knee? Or maybe had a month off once with mild depression?

Sorry, that post isnt fair on people like looking

It is bloody offensive though. Even the title is offensive. Replace "with a disability" with a specific racial minority and see how offensive it is.

bochead, not only better education but schools and parents should try and find ways to prepare students with the "tough stuff". People never told me about landlords/employers who would turn me down or how to deal with society in general. We're not prepared for these things and after being rejected a few times, many don't have the guts to try again.

What planet are you on Chelsy. Being of a different race doesn't mean you may need extra help with dressing/washing/walking/medication whatever. Having a disability does.

Happymummy, why do you even bother to comment? You have no idea what it is like to live in pain or with the constant (and they are constant even if your child attends school) demands of appointments etc and just getting through the day. If you have a child that is up a lot through the night when do you expect people to sleep while they are working in this fictitious part time job that is available as hours to suit and term time only? Where is this bank of child minders that will take on a child with a disability so parents can work?

You have no idea at all so just shut up.

Sorry, having a disability may do. Depends on disability, obviously. Just listing what I do each day.

BeyondTheLimits Bet one of those over forties has arthritis in their knee? Or maybe had a month off once with mild depression?

Jesus Christ. How offensive can you get? A competition to see who has the mildest condition which might qualify as a disability but doesn't stop a person working?

fwiw one has schizophrenia and is bipolar and has attempted suicide twice. Satisfied? The colleague on crutches has diabetes and barely functioning Achilles tendons. One had a brain injury following a car crash resulting in short term memory problems following which depression resulted. More satisfied? I don't know more intimate details. Just because people manage to work doesn't mean their disability is not less serious, or that they wish to classify themselves as disabled at all.

Umm its not even vaguley the same - if a family member is black, gay, muslim or a roma gypsy, it doesnt mean they are often unable to work themselves and often also need someone to care for them?

Although the big things are the main thrust of the thread - I find it's the odd small things that cause the most upheaval.

DH has a lung condition - until the smoking ban he struggled to go 'out' anywhere; when we go on holiday we have to stay in slightly better accommodation - Silver at a holiday park, a hotel not a B&B as we have to avoid allergies (dogs etc). He can't go camping in case he gets wet/cold over night - the consultant was so fixated on that!. We have to put sun cream on him as he is on medication that makes him burn which costs extra (not a major expense just an other thing to buy - made even more laughable by the fact that he is Jamaican!!). He needs to eat regularly & I have food allergies/intolerances so when we go out we plan where we are eating rather than take pot luck on there being 'something'

All these things aren't necessarily expensive - but they do add up; but they make life so damn complicated!

I don't find school that much help in terms of freeing up time to work. I don't have any after school care for ds1, or any holiday care. I run my own business working a lot of evenings and respite days to try and make ends meet. I do exactly the same amount of caring as I have always done (even when I didn't work), but am not entitled to carers allowance as I work more than 15 hours a week. CA should be based on the amount of caring you do - not the number of hours you're up until midnight working to catch up.

To put into context my son requires 24 hour care and always will - he is not just workshy.