How to finance both parents staying at home with severely disabled DD

[CheeryCherry]

I am friends with a couple who's daughter has a degenerative condition, undiagnosed but life limiting. They both wish to stay at home with her full time, to enjoy every minute they have. She is home educated. But how can they fund this? Does anyone do this, and how do you manage? Thanks.

Anyone?

The only financial help is Dla, housing benefit, carers allowance and you get extra child tax credits for having a disabled child.

I personally would advise cutting hours down maybe doing 16 hr so they get to spend more time with thier dd while one parent claims carers allowance. They can then claim HB Child and working tax credits and dla. HTH.

Crawling thank you. I will pass that on. I'm guessing it is not possible for both to give up work and that's what they were hoping to do.

I think they would be under the same constraints as anyone else if they chose to give up work-unemployment benefits would not be paid since they had done it voluntarily.
I agree to the idea of cutting hours down. It also means that options are not permanently cut off.
I am full of sympathy for your friend. In a civilized society, there should be a way for this couple to put work on hold to be with their child. Our society has lost its way

amistillsexy thank you for your comments, I just wish I could help them more. :(

There are ways you can help, if your friends will let you- shopping, cooking and cleaning seem to be the things that take most time away from being with DCs. Can you help out there at all? By taking round a pasta bake and a bag of salad, maybe, so they have a nice meal to pop in the oven with no preparation to do.
Other ideas- offer to tidy up their garden if they have one, so they can be outside when the weather gets warmer.
Could you take away a load of washing (work shirts? Child's bedding?) and bring it back clean and folded/ironed?
If your friend would allow it, and if you're close enough, could you offer to clean for her? Something specific, like 'I'll come round in the morning and hoover downstairs for you', so she doesn't feel you're taking over!
An offer to do a supermarket shop might be welcomed, or to come with your friend to help by pushing the trolley if she needs to push her DD's wheelchair, if she uses one.

I don't know if your friends would appreciate this sort of help, but these are the sorts of things I've offered to people in similar situations (very ill children, in and out of hospitals, etc). Another way I've helped a friend was by writing to and phoning round charities to get funding for a new wheelchair. We found that I could be much more direct and honest with them than she could, as she felt so bad for asking for the help. I knew that she needed and deserved it, so could be much more persuasive! Would anything like this be of use?

Sorry, I seem to have bombarded you with ideas...I'm not suggesting you do them all ! Finally, sometimes just knowing someone's there to sit with you and listen is enough.

I hear what you're saying, and I do offer to lend an ear at all times, they are a very very proud and private family, find it uncomfortable to ask for help. They have asked in the past but only in dire emergencies. I have given meals, shopping and similar help for other friends, but I know this family wouldn't feel happy about it. And I respect that. But thank you, I realise every little helps.