A query on benefits for a family with a disabled child.

kj*daisy

I would advise you try and keep working for now as with changes ahead, and the way the goalposts can easily be moved by government when it comes to benefits, you might find you are ok now not working - but then be expected to work sometime in the future or face benefit cuts, and then you might not find an employer who has the 20 hour week, or is flexible and could be a lot worse off.

I think people comparing looking after a severely disabled child to similar to looking after children with no disabilities, even if there are 3 of them, are missing the point. And the fact is some people are tougher than others, I know if I was in the ops wife situation I'd struggle to cope and want my DH around all the time, but others would cope fine on their own.

FBaby

kj*daisy wrote: »

I think people comparing looking after a severely disabled child to similar to looking after children with no disabilities, even if there are 3 of them, are missing the point. And the fact is some people are tougher than others, I know if I was in the ops wife situation I'd struggle to cope and want my DH around all the time, but others would cope fine on their own.

I don't think so. Having a child with a disability means that caring is more demanding physically, mentally and psychological than looking after a child without disabilities WITHIN the same circumstances. Benefits are already taking this into account, DLA will allow these families to work less hours, provide a car etc... However, I don't think the disability means that their lives are forceably more difficult than those facing other difficult circumstances yet have no choice but to get on with it. Many would to opt for easier circumstances feeling under massive pressure for whichever reason. Life with a disabled child must no doubt be very tough, but so is life as a single parent, working full-time in a pressurising job under threat of redundancy, with an ex not paying any maintenance and being threatening, family that lives abroad. That was my situation at a time when I too felt I was at the end of my tether and would have loved some support, but there are many others difficult life circumstances.

I understand that Mark was only looking at possible avenues, feeling himself under pressure. I'm sure life is tough, but his youngest will be at school soon at that surely will make life easier.

princessdon

No one asked of the Terrible 3 had disabilities - They do and ALL of them. They are far too young to determine what effect this will have long term - 2 are blind, 1 is deaf blind - 2 have severe delay (but at 14 mos they are too young to categorise), they were born at 23 weeks and so have many issues with breathing, their house is full of machinery.

At the moment their care is manageable - as they are not mobile, but I can tell you that both parents are counting down the days till they get respite (at school) and to be able to catch up on sleep.

Sorry but I stand by what I said. If OP said "my work is when the children are HOME and I need to be there to help" I'd feel differently. They didn't they said they wanted "couple time" and to be able to do chores whilst the children are at school. That is a million miles away from 2 needed to care. End of the day their child is at school for the vast majority of the day and I can't see why BOTH parents need to be in the house alone all day without children present.

I'd fully agree that a change of job (even maybe a term time one) etc may be beneficial but for someone to give up work and rely on benefits (when things will get tough when UC kicks in) so they can have some couple time isn't the same. Many couples (disability or none disability) don't have this - it is a luxury that few can afford.

Maybe if OP had rephrased it - I wouldn't have taken offence, but I did because they made it sound like they wanted quality time with their wife and benefits to support this.

Mark31

princessdon wrote: »

Maybe if OP had rephrased it - I wouldn't have taken offence, but I did because they made it sound like they wanted quality time with their wife and benefits to support this.

I had already said I am not explaining myself very well and much of what is said is examples. I also made it clear that I didn't want to give up work but would it be possible as a worst case scenario. Giving up work to spend time as a couple? That would be laughable.

No worries though as it is hard to grasp what people mean on facelsss forums though

princessdon

Well then I apologise - but that is exactly how I read your post as you wanted to give up work so you and the wife had 30-35 hours a week to yourself.

I'd look at work in school time (some companies do this) - eg you work - front loaded hours, or have unpaid in holidays and this is spread, or look at parental leave during holidays etc. I do think with UC you will be in a far worse position than you are now.

Your wife has done a grand job until now (and yes with a young one at home too it means less time), but as I said initially - in September BOTH children will be at school and there will be time for her to get some respite. I'd be more inclined as I said to look at none financial help (school holidays, equipment, respite) but that is just my opinion.

wattdallas

princessdon wrote: »

No one asked of the Terrible 3 had disabilities - They do and ALL of them. They are far too young to determine what effect this will have long term - 2 are blind, 1 is deaf blind - 2 have severe delay (but at 14 mos they are too young to categorise), they were born at 23 weeks and so have many issues with breathing, their house is full of machinery.

At the moment their care is manageable - as they are not mobile, but I can tell you that both parents are counting down the days till they get respite (at school) and to be able to catch up on sleep.

Sorry but I stand by what I said. If OP said "my work is when the children are HOME and I need to be there to help" I'd feel differently. They didn't they said they wanted "couple time" and to be able to do chores whilst the children are at school. That is a million miles away from 2 needed to care. End of the day their child is at school for the vast majority of the day and I can't see why BOTH parents need to be in the house alone all day without children present.

I'd fully agree that a change of job (even maybe a term time one) etc may be beneficial but for someone to give up work and rely on benefits (when things will get tough when UC kicks in) so they can have some couple time isn't the same. Many couples (disability or none disability) don't have this - it is a luxury that few can afford.

Maybe if OP had rephrased it - I wouldn't have taken offence, but I did because they made it sound like they wanted quality time with their wife and benefits to support this.

Maybe he didnt put it across well ,but lets face it he would probably have to write a book on looking after his disabled child.

So the triplets do have major disabilites - sorry to here that .

You are right though they are still babies - it gets alot harder the bigger they get .I really feel for this family having 3 disabled children, poor parents ,not because of their disability but for all the caring and fighting for help,services,equipment.

Lets hope some major changes with this gorverment for more help for parents whom give up their entire lives to care.:)

FBaby

but there is already a lot of help. That's what I don't understand, why despite all what is available, some people think they should have even more even though after all the help they already receive, they might not be worse off than other people dealing with difficult lives for other reasons, but who are not elligible for any help.

I think it is important to separate what 'caring' means. Every parent care for their children, it is just that children with disabilities need more care. That doesn't mean that the government should support ALL the caring needs of these parents. They are still expected to provide the 'normal' parenting care like everyone else, getting up at night once in a while or for a short period of time, cooking, cleaning, disciplining, washing and later on pestering them so they do wash, help with homework, taking to classes, organising parties, friends coming over, sorting out school holidays, taking them moaning to buy new clothes and I could go on and on of course...all these duties can also be exhausting for full-time working parents, but this is the trade-off for having chosen to have children!

princessdon

As I said at the moment their care is no different to when they were born - endless rounds of nappies, feeds, comforting, both parents NEVER stop and never sleep.

If it is Ok for a family to give up work and rely on benefits if a child is disabled then surely it is OK for a family to give up work and rely on benefits if not disabled but needs care and 3 babies need constant care. Once the children are older then they can go back to work. You can imagine the outrage that would get!

Point is at the end of the day many families work blooming hard (disabled or at times none disabled if their circumstances mean care is needed) to look after children, have no couple time and are exhausted. Many families do difficult jobs.

And they will fare better than most (if luck continues) as they have a very successful business so will be able to financially afford some of the help. Clearly if their business goes under or things change it would be a different matter.

mikey_bach

Universal credit is coming, yes, but it is not replacing all Benefits and Carers Allowance is not one of them.

Also making a straigtforward claim to I.S doesnt warrant a decison on the claim by s SDM.

The OPs partner is a carer, she can claim I.S if the OP isnt working.
If he gives up hs job to help her the he WILL NOT be penalised for I.S purposes.

The OP came on for some help and advice he has received some good advice on here.

Life on benefits isnt easy and its not a choice they will make lightly but if needs must for a while who are we to judge then,
we dont make the legislation the goverment does.

So OP it is yur choice

wattdallas

FBaby wrote: »

but there is already a lot of help. That's what I don't understand, why despite all what is available, some people think they should have even more even though after all the help they already receive, they might not be worse off than other people dealing with difficult lives for other reasons, but who are not elligible for any help.

I think it is important to separate what 'caring' means. Every parent care for their children, it is just that children with disabilities need more care. That doesn't mean that the government should support ALL the caring needs of these parents. They are still expected to provide the 'normal' parenting care like everyone else, getting up at night once in a while or for a short period of time, cooking, cleaning, disciplining, washing and later on pestering them so they do wash, help with homework, taking to classes, organising parties, friends coming over, sorting out school holidays, taking them moaning to buy new clothes and I could go on and on of course...all these duties can also be exhausting for full-time working parents, but this is the trade-off for having chosen to have children!

Fbaby could you tell me what help other help there is ?

Iagree that some caring is normal parentingand that is fine but changing and feeding a nearly 13 yr old that is as big as me and is a dead weight ,its physically getting impossible for me to do alone.

Same with sleep - yes were all up at night at some point with our children but imagine having no sleep because well she just doesnt sleep - and its been going on since she was born :eek:

Thentheres the seizures (god ihate them so) every bloody day.

Where is all this help fbaby ? we do it all .

Yes i know what you mean having kids = hard work ,but i didnt choose to have a disabled child and would love just to be a mum:)