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!

Only 4 years in to our special needs journey but financially it's hit us hard. We couldn't use a childminder as we'd planned to as dd needs more than one adult so nursery and nannies instead w the extra cost of that. When she gets older it will need to be specialised staff again a huge extra cost. Equipment all costs extra, and takes time to source. Safe space anywhere hwe 4000-8000, adapted trike one day?, special cutlery, nappies, the endless washing due to drool and messy eating - imagine that messy messy weaning stage going on for years, so more clothes all round, sensory equipment.
I couldn't work first 3 years due to appts and needing to do therapy stuff at home, showing nursery and nannies what to do etc Now much of that happens at sn nursery and soon sn school but holidays are a challenge, after school care hard to find. Even if I don't work we still need childcare as dd is so hard to look after.

Dla and carers allowance we are grateful for but I used to earn triple what that brings in and w ordinary career progression poss it would have been almost 4 x that by now.

Hmm, I haven't kept specific stuff on carers - and I'm not up in the details of what triggers CA. So please correct me if I'm wrong, anyone.

IIRC, it was planned to redefine people who only woke X amount of time in the night as "not needing a carer".

I thought this had already gone through. But I could be wrong.

HOWEVER.

Where CA was being triggered by an award of DLA, there will definitely be thousands of carers who lose that CA when PIP replaces DLA. The aim of PIP is to cut the number of people eligible for DLA/PIP, by moving the thresholds. There's lots of obfuscation by changing the names of benefits and types of tests, but basically, the DWP reckon they're removing both CA from 5000 carers; Carers UK reckon it's 10,000. And for all of those, the disabled person will have lost DLA too.

"Thousands of carers set to lose benefits" BBC 13 Feb 2013.

So, sorry, yes, there are still CA cuts to come.

I do vaguely remember hearing something about that at the time, it scared me then and it scares me now!

If they remove ds's DLA and my CA, we won't be able to survive. It would effectively cut my income in half and I don't have a lot I could cut back on. I don't smoke or go out much! I could end up having to put the kids in care because I couldn't afford to feed them or pay the bills - sounds melodramatic but it's the truth! Although presumably if they stopped CA my IS would go up but still....:(

removing both CA from 5000 carers

Owllady I lost my hour a week two years ago, due to cutbacks. Still not had it renewed.

It's terrifying the way that things are being made harder and harder for disabled people right now. My mother was disabled for the last few years of her life, through chronic illness. I acted as her carer at times when she suffered infections or attacks which left her too weak to move. She died unexpectedly early, living in relative poverty. Had she survived I would have had to act as her full time carer, perhaps holding down the odd minimum wage job as and when I could. Someone posted upthread about the financial knock-on effects of disability within families - I absolutely agree. It isn't just the disabled person but anyone involved who has their choices narrowed by their caring responsibilities. The government saves a fortune by not acknowledging - financially or otherwise - the work that carers do. It's appalling the way that the most vulnerable in our society are being marginalised and ignored, or worse, blamed.

I wouldn't want any tossers reading this thread to misunderstand and think that meeting his needs means all these disabled kids are getting something that their kids are not.

Needsasock ive seen this in action. I live directly opposite a infants/junior school and a couple of years ago I was waiting at the bus stop and I heard two mums talking in the garden of a house next to the school. The first one was having a right old moan about the fact that the special needs kids and the gifted kids in the class were getting all the attention and her own DC who she classed as being one of the average kids was in the group that (in her eyes) was being neglected. This was a while ago and I cant remember her exact words but I remember the conversation got really vicious and I got on the bus feeling absolutely disgusted with them.

I suppose we are the exception to the rule. We are not millionaires but DHi is a high earner and disabled. Perhaps if he didn't have his disability we"d be marginally better off. For example we've just been away on a trip and it cost us more because of taxi costs and having to upgrade on the train (there were no seats is standard and it's impossible for him to stand).
Having a disability, having a partner who's disabled and having a parent who's disabled is very hard at times and it certainly feels like a life less ordinary for us, but we try to focus on what we can do rather than what we're missing out on and that seems to see us through. Whilst I do often wonder what a lot of other families have to worry about I feel lucky compared to many people and knowing exactly what others are experiencing at the moment, it makes me feel for them.

We've had that on here before on a thread about a kid with additional needs being disruptive.

There were quite a few piled in with 'but it's not fair because he's getting extra help and the other kids aren't' - stupid and lacking in empathy.

MY DH has COPD This year I have become absolutely terrified for the future.

This condition is often treated by the ignorant as a "malingerers disease" (at least that's my experience anyway) he uses a mobility scooter to get around but ive heard people say "if its just breathing problems why cant he walk. (he has arthritis too but he would still need to use the scooter if he didn't as his breathing is so bad.

If/when DH isn't here anymore I have already realised that there is a time limit on grief if you are below a certain income!!!

Extremepie, unfortunately I think lots of families with the most complex children are forced into shared care arrangements because the local authority fails to support and protect them properly. That will only get worse if the current trend continues. I don't judge people who choose or need shared care, I need to make that clear! I completely understand how someone would get to that point.

Removing £63.15 carers allowance off someone who dedicates 24 hours a day, 7 days a week, often sacrificing their own quality of life and health, is BEYOND THE PALE. :(

Darkesteyes - I find people are remarkably ignorant of the impact of many medical conditions. I have major breathing problems. I and my partner have explained it to frienda many times. They are sympathetic, but they still make comments which show they don't get it.

Struggling to breathe is bloody exhausting.

I have to say some people with disabilities also can be remarkably unsympathetic. Like David Blunkett who insisted most disabled people can work. He just didn't understand that being blind is very very different from having a chronic illness that makes you feel like shit a lot of the time.

To be honest, I think that blindness is one of the most challenging disabilities!

Yy calmet!! I think i tried to explain that to twathead about seven pages ago! :)

Being blind certainly present major challengs. But David Blunkett showed a remarkable lack of understanding of other disabilities.

So a relative of mine has just died of motor neurone disease. Struggling to swallow, to speak, to eat, is common nearer the end.

From a work perspective, there are some disabilities that you can nearly always work with, some you can almost never work with, and then a hell of a lot of middle ground where it depends of the extent of the problem and loads of other things. It is never so cut and dry as some people imply.

I think that that is what has shocked me most about this thread, and what will stay with me for a long time.

That some people with disabilities, are so un empathetic to others that have a different disability to themselves. I am shocked tbh.

It's an eye opener isn't it?

That's without going into the mental disabilities. That's a whole different kettle of fish.

And lets be honest, it also depends on the workplace. An ex bf worked in an architects practice with a man who was in a motorised wheelchair. He needed help to go to the toilet, for someone to fetch drinks for him and place them correctly with a straw, and to help him eat his lunch. Colleagues were happy to help him. But in most workplaces that just wouldn't be the case.

I heard a really interesting US documentary that compared the job opportunities opening to people with similar physical health needs in different parts of the country and who had different levels of education and experience. Essentially, they argued that there were people who might have been able to work if they'd lived in a part of the country with less physically demanding jobs, but as it was, it was work a very manual job or take DLA.

linkery - I have heard people with quite major disabilities who work, say that nearly everyone with a disability could work, but most are too lazy.

I am going to say something now that has been in my mind's eye all afternoon.
I live near a town that has a respite place for special needs for adults.
A few months ago, I saw a woman who was out for the afternoon. And she was wheeled about on what was effectively a tray, because that was what she needed. [There were other things I saw about her, but wont mention].
Now how on earth could she possibly work?
How on earth would it help her not to be called disabled?
How on earth is she going to be "negatively stereotyped"?

calmet, I find it mind boggling.

Grendels im not having a go but I just want to point out that DLA is not an out of work benefit just in case we get any more hard of thinking contributors to the thread.