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

Sparklebabey

Mark31 wrote: »

A quick one regarding the strains of marriage, we are very strong together and our strain is not having enough time together, any time out of school hours is taken up. Our only viable time together is for a few hours a day during school time. A couple of hours before we both need to make preparations for the return of our son. Preparing dinner, housekeeping duties and my wife or myself catching up with sleep from a potentially difficult previous night would also need to be factored into the school hours. Not much time together but a little.

So you don't really want to give up work so that you can help tp care - it's so that you and your wife can spend some quality time together?!! Then you have zero chance of being able to convince the DWP that you have a valid reason for giving up work and both of you living on benefits.

With all due respect the part in bold is what most parents have to do on a daily basis - whether their child has a disability or not...parents would love some 'me/us' time but sadly it doesn't happen...and certainly not having the luxury of full days!

Whilst it may not be a popular thought, it always puzzles me when parents come on here and lay out a childs complex needs but then go on to say they had another child...

Why don't you swap roles if you are the only one that he will listen to. You give up work to do the caring and then your wife can go back to work?

Sparklebabey

Also, kingfisherblue, just wanted to say that you are giving marvellous advice to the OP:T

Mark31

That last post isn't as clear cut as it sounds and was purely additional information on our situation as a couple, clearly the whole reason and fundemental reasoning for my line of questioning is for the care of my son and using the time he is at school for other duties and things which are needing doing in preparation for his return home.

My wife could catch up on some sleep and I could prepare the dinner etc for my son, she would need to catch up on sleep from a potentially difficult night. I only added in the spending time together part as an example of what we could need and not as a reason for coming out of work, that would be a ludicrous reason. Obviously we would spend time together at night but that could happen at night as and if my son stays asleep for long enough.

I am sorry if my explanations or ramblings are coming across badly, I have never been good at explaining myself or explaining examples. The spending time together part really isn't a reason. It was just myself thinking everything over out loud, so much information and trying to process it all that late last night has unfortunately made my reasons come across wrong.

Mark31

In addition, our daughter was an unexpected pregnancy. It certainly wasn't something we had discussed, people seem to be making some rather large assumptions on a few things here.

princessdon

Mark31 wrote: »

Our only viable time together is for a few hours a day during school time. A couple of hours before we both need to make preparations for the return of our son. Preparing dinner, housekeeping duties and my wife or myself catching up with sleep from a potentially difficult previous night would also need to be factored into the school hours. Not much time together but a little.

Benefits are not so people can have quality time together! Sorry but that is one of the most selfish statements I have read (if you take it alone).

If you need to be aorund for your childs needs, then I get that (although whilst he is at school 40 hours a week I don't fully get that TBH), but for you to ask me to pay for you so you can have quality time with your partner is an entirely different thing.

How is your "lack of sleep and time to do chores" any different to my friend who has triplets! Do you think she has time to sleep and do chores? Should her husband give up work so they can have me time when the children are 6?

GlasweJen

With 2 of your children out for half the day there's really no need for you to give up work.

If you did give up work you would need to claim job seekers allowance as your wife gets the carers allowance, that would mean applying for jobs, going on training courses etc and sanctions if you fail to apply for work that the job centre thinks is suitable.

When universal credit starts the conditionality will change to you being expected to find full time work, your wife will still receive carers allowance but any top ups (like tax credits) will depend on you applying for 35 hours a week (be this your current 20 and another part time job or a whole new job entirely). You can get sanctioned for not satisfying this and your top ups cut until you toe the line.

Things aren't great now but the wee one will be at school soon. Why not look for a better paid, more suitable hours job while you stick to the job you're in?

wattdallas

princessdon wrote: »

Benefits are not so people can have quality time together! Sorry but that is one of the most selfish statements I have read (if you take it alone).

If you need to be aorund for your childs needs, then I get that (although whilst he is at school 40 hours a week I don't fully get that TBH), but for you to ask me to pay for you so you can have quality time with your partner is an entirely different thing.

How is your "lack of sleep and time to do chores" any different to my friend who has triplets! Do you think she has time to sleep and do chores? Should her husband give up work so they can have me time when the children are 6?

OMG Your friend whom has triplets will get to have a full nights sleep in time when her "normal" children thrive.

Mark i so sympathise with your predicament - been there.

Do what is best for you and your child,some disabilies require 2 carers ,i know my daughter does .

People cannot understand unless they are going through it themselves:)

Good luck

Edale

I find it quite surprising that people are so judgemental. As the father of a severly disabled child, nobody knows what it is like apart from you. Every families circumstances are different and different people cope with the situation differently. I know the huge pressure it puts on your relationship which explains why such a large percentage of parents of disabled children separate. My wife and I both work full time and at the moment that seems to be the right thing but it puts huge pressures on us and there is not enough support to help parents of disabled children stay in work.

You must do what you think is best but I would find it really difficult staying at home and not having the interaction with other adults in a world away from our son's disabilities.
You will only know how this will be when you have done it, I have always worked but for the first few years of our sons life only did 12 hour per week, going full time 3 years ago was the best thing I have done as previously I had a big hole in my life and felt very unfulfilled and worthless, it also gave me lots of time to think about how cruel life had been to us which was not helpful.

As I said to start with, everyones circumstances and how they deal with their life is different so what is good for me would not be good for someone else but people being so judgemental and condemning is far from helpful to the OP.

FBaby

I have to say that this thread got to me from the start and although I can sympathise with the difficulty of raising a disabled child I feel the op is already getting a lot of support to help his family with the situation and yet feels he should get more citing issues that many other families face for other reasons than disabilities. I went back to work full time travelling over an hour when my dd was 6 months old. My partner at the time worked full time too having to travel more than two hours mornings and evenings. At there time there were no such things as tax credits and we had to do it to pay our bills. My dd suffered from very bad colic that unfortunately went on until she was 14 months old. She was an extremely demanding baby -so much that her childminder although she adored her said she couldn't continue to look after her full time- and used to scream every night. By then she had got used to me comforting her ask I was the only one who could deal with her at night -our so my partner claimed!- I could have written a book about getting on with a demanding job suffering from very bad sleep deprivation and yes it put a huge strain on our relationship but so is life. Soon your wife will have over 6 hours a day for herself to get on with things and have some rest that's already quite a luxury.

kingfisherblue

http://www.workingfamilies.org.uk/articles/parents-and-carers/caring-for-disabled-adults-and-children/waving-not-drowning

This is a link for those who are interested. The Waving Not Drowning Project is for parents of disabled children, and is aimed at parents who work or who wish to work.

Regarding judgmental posts, I can understand them, even if I don't agree with eeverything that has been said. I have a severely disabled child and I have no option but to cope alone. Others who have a partner are in a fortunate position, and I wish them well. However, it does not alter the fact that the OP has mentioned the possibility of giving up work to claim benefits. I have tried, as some other posters have, to advise of alternative ways to help alleviate a difficult situation. There isn't an easy answer, but some options may be useful to the OP and his family, whereas giving up work can be very stressful in itself. Being with your spouse all day, every day, can be a great strain on a relationship (as can having children, disabled or not).

Hopefully the OP will be able to explore some options that could be open to him and his family, to give them the best possible outcome for their personal circumstances.

Just another thought - if there is a carer's centre in the OP's area, it may be worth contacting them. They are a mine of useful information as well as being a fantastic support. My local centre has a parents' group that meets for a couple of hours a month, where we can chat, moan, have a coffee, and exchange information with other parents. There are also regular forums organised for parents, with professionals attending to answer questions on specific subjects such as schooling, health, social activities, etc.

To be fair regarding the OP's comment about his wife catching up on sleep whilst he prepares dinner, I can do both. I sleep once the children have gone to school, and when I get up I do the housework and cook, often before the children are in from school. I prefer it when my daughter cooks though, as I can't stand cooking

OP, you work 20 hours a week. Do you mind me asking if this is during the day when the children are at school/nursery? Would it be possible to change your working hours so that you have an early start maybe, and then you can be home with your wife when the children are home? Or do you work three days? I really can't see the benefits of you giving up work at the moment, and I would love to be in a position to return to work myself, but I have no one else to care for my son (and childcare for disabled children is virtually non-existent). Working can be very fulfilling and can give you a sense of responsibility and achievement, increased self esteem, and different topics of conversation apart from nappies, feeding and hospital appointments . I think that's why my voluntary work is so important to me. It gives me a chance to be me, not 'just a carer', and offers opportunities to use my brain and for adult social interaction.