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!

One or two deluded people on this thread. One of the things that annoys me is if a person (child or adult) requires care some people on this thread think it can be found and paid for easily. I have enough of a headache getting regular childcare. Try having your mother or your 35 yr old son looked after while you work or a severe epileptic (just 3 random examples there are loads more).

The standards of regular careers or respite care are in my view poor (they are rarely medically trained). Carers rarely come to the house on time and rarely before 9 (hardly compatible with employment). Respite care is provided in a home and has anyone recently seen the coverage these sort of places have received.

Being a single mum who can't work or just one earner will make you as a group poorer. That doesn't mean there are no execptions.

I also haven't mentioned the equipment costs. Kids or adults don't get the best equipment for them paid for, they get adequate equipment. So you'd like your 9 yr old to have the best chance to achieve at school and intergrate with his friends. Well a decent wheelchair that turns tightly and is easily controlled by the child without needing playground helpers, that's 3k of your own money not inc insurance.

Grr

Yy, the Grabby thread is brilliant! Made my day yesterday!

I am a parent carer and a single parent... I get carers, my son gets DLA, CTC, etc... Have only just qualified for IS as been using savings to be off until now.

My son doesn't look disabled - he has ASD and he's in mainstream but he's there because the special provision is full and we are close to transition to secondary... It would do more harm than good to move him... School and I are 'just' managing...
When I worked, even flexibly he didn't manage so I made the decision.

Yes I am poorer but I remain focused on getting back to work when he's in secondary (please I know the reality of this if he remains in mainstream please don't burst my bubble!) and I feel like a burden on society every day...

More and more children who sit in the grey area of mainstream / special are getting less support - I am part of a group who support parents in this position and more and more are leaving their jobs to become 'SAHM' to help their children cope & effectively bridge the gap... They are often hidden from figures as the wait for diagnosis can be 3years in some cases...

I feel like I should work, I feel less of a person and some posters on this thread have reinforced that feeling.
I have friends with children with complex needs who work but one said to me that for her it's only now, many years down the line that she can work part time because his appointment are less, he's better managed and his care package is in place... It took years to get it in place (and it's being reassessed!) and she met with a lot of resistance from professionals to her working - she was told categorically that her respite is not be used for her to work...

I appreciate that there are a lot of opinions on the subject but I wish people would be kinder

Tbh Doris, there have only really been 2 people on this entire thread who have been unkind/vile and neither of them has any direct experience of living with disabilities so I wouldn't take what they think to heart.

Sorry to whinge about dhs earnings again.

But one thing that doesnt occur to a certain poster upthread who said "if youre earning x amount and not entitled to housing benefit, then youre obviously not near poverty"... Our entitlements etc are all worked out on DHs full salary. In both of the last two years, he actually earnt about £5k below his salary, as he had so much time off.

But we cant fill in forms with his actual earnings, because we are so scared about being overpaid and the government claiming it back from us, years along the line. People who are overpaid are demonised and even criminally charged with fraud!

(please I know the reality of this if he remains in mainstream please don't burst my bubble!)

I had to laugh at that because that's how I feel at the moment.

Smiles, family is everything here. I work in both Hue and Quang Tri, QT has an estimated 37,000 people with disabilities, most of them caused by agent orange, bombs and landmines. Nasty stuff that is still around. There are no care homes as such, so families look after the children/adults. There is a school for blind/deaf/down syndrome/AO/autism all mixed, but if children can't walk, they can't attend. The existing school only goes to grade 5. Huge, multi generational families like together and if parents work, grandparents, cousins etc help with childcare.

Grade 5 can mean 10 or 20 btw. For deaf students, it's typically one grade for 2 years, then sewing class.

Also, Vietnamese are very curious, which can be annoying or funny or good, depending if I'm tired. They LOVE to touch my very expensive equipment. and see how it works.... Nobody in the UK asks, they assume.

Someone (well about 10) came to see while I was writing braille today and he googled the braille code and...started reading what I was writing and telling everyone else That's a new one!

Love the initiative..googling braille. I didn't even know that was possible.

What a shitty thread. to a lot of posters on here.

My DH has MS so I'm a carer. He hasn't relapsed for a few years, thankfully, but he's lost several jobs because of his diagnosis. During his last relapse he lost the feeling in his hands, so outside of paid work I'd have to do everything and would spend the whole day worrying if he'd be able to leave the house in an emergency. His illness has impacted us financially, but less so than if he'd had MS from a younger age.

YANBU Op.

This is a case of someone being consistantly nasty and vile to specific groups

YY

dont know if you realise that she has started a thread in Site Stuff.

Calling herself 'twitty' and using the word 'unsupportive' about her own posts? It isn't her. It is someone critical of her, wouldn't you think?

I think I didn't get past the first person before I cried

But then I cried at chicken falling out of the fridge yesterday - wasn't even a live chicken

Smiles and piles... I recommend a bubble - it's the only way

More and more children who sit in the grey area of mainstream / special are getting less support - I am part of a group who support parents in this position and more and more are leaving their jobs to become 'SAHM' to help their children cope & effectively bridge the gap... They are often hidden from figures as the wait for diagnosis can be 3years in some cases...

YYY Doris

Not sure Fideline. The op on there has not come back and posted anything else.

I am presuming that mumsnet know all about this?

I am presuming, rightly or wrongly, that a big announcement will be forthcoming, and that is why nothing has been heard from them yet?

Not sure I have seen anyone from mumsnet about at all today.

Linkery - Give the OP of that thread the benefit of doubt...they may be at work or gone out to a family event.

If they've not come back later on tonight or tomorrow then you may be right.

Beyond, you'd have to get used to the horrendous traffic. :) Most people will help if I ask, others don't.

When I couldn't speak Vietnamese though, few people helped (Vietnamese are very shy when it comes to foreigners and speaking English)

I made this video as people had no idea what I went through. I used to hate Vietnam.

I know a deafblind girl who came here, by herself. Her blog is tactile the world.

I'm a social worker who previously specialised in children with disabilities, this often involved doing carer's assessments and some assessment of the families financial needs (not that our services were means tested but we'd look at finances as part of the child's wider socio-economic circumstances to see if any additional support was needed).

The circumstances of families with a disability are as rich and as varied as those without (and I'm not about to sit here and justify the existence of those without an adult in work, this is not 1930s Germany).

What I will say is that some of the posters causing disquiet and hurt on this thread really, truly have no idea what they are on about. Its like me going on a thread and speculating about quantum physics. I am cringing for them.

linkery Can you seriously imagine HMOO calling herself twitty? Never!

Good point purple. I doubt David Cameron is worried about the extra cost of having a disabled child.

No, but he'd shit himself (in fact they all would) if all carers downed tools and told him to pick up the slack.

Well said purple

I have only read the op but yes of course it affects your wealth if you have severe disability or illness in the family. If people don't understand that, they need to get out more.

You'll need to read the thread...with vodka.

Out of curiosity, how are respite carers chosen? What do you do to become one? Do they get paid?