What would happen?

oxcat1

Hello,

I wonder if you can help? I'm having a really rough time if it at the moment and just trying to find out if there are any options.

I am 34, with a progressive lung condition very similar to cystic fibrosis. I use oxygen full-time, a wheelchair, and have daily care needs with physiotherapy, overnight NG feeding, washing, dressing Etc. I recieve higher rate DLA, both currently indefinite, but as I spent September-December in hospital, my payments were very sporadic.

I am not well enough to work. I spent one year in the WRAG of ESA, and then one year in the support group. However, I have not paid sufficient national insurance credits to be eligible for any payments, but simply received credits towards my pension, a pension I may well not live to receive!

My poor husband is working himself to the bone. He receives £18,000 pa and rent-free accommodation in a house, but works 08am-2100 6/7 days a week. He is self-employed, so not eligible for lots of benefits.

We are both deeply unhappy. My husband has to come earning to keep a roof over our heads, but this means he cannot visit me in the hospital. If my time here is limited, we would so, so much rather spend it together.

What would happen if he gave up his work to care for me full-time? We have no savings. Would he be eligible for carers allowance and would we be able to get any assistance with housing? Alternatively, what if he dropped yo 16 hours a week, at around £8000. What would the situation be then?

I don't want to imply that we are out to get anything we can, but we're desperate. I'm in HDU at the moment, alone, and my husband cannot visit until Saturday. He feels desperately torn, and I feel alone, but his is our only income, and indeed the roof over our head.

Is there anything we could do to improve things? Any help much appreciated, and suggestions fir best to work through these scenarios,

Many thanks.

murrayfan_2

How old are you both?. I know your husband is self employed but I assume he's paid NI contributions, so should be entitled to help?.

I think you should both be assessed by local adult services, him as carer and you as a person in need.

You could also apply for local housing, contact the local council for this, but really you need the assessment of need first which will help your case for priority.

I'm curious about the accomodation, is it connected to his work?.

I feel for you, and you really need some help asap. My aunt had cystic fibrosis and the rest of the family stuck their heads in the sand, and now wish they'd done more to help/be there for her. Do you have any other family?.

GlasweJen

If you're in a hospital then carers won't be paid if DLA isn't being paid.

Your husband would have to claim job seekers allowance and that's not worth much at all.

Could he negotiate on his contract to get home earlier to come visit you in hospital?

oxcat1

Thanks for your replies.

My husband is the same age as me: 33. He can't work shorter hours because of the nature of his job - it's very specialised but involves working with both children and adults, and obviously that can only happen after school/work hours, and the day is spent in admin.

I did receive 6 weeks of carers from the council, and they assessed me as being eligible for ongoing support, at a cost of, I think, £47 a week. We decided to go it alone, partly as I still struggle to accept the idea of needing full time professional carers, and my husband can do it all for me, and much better, but he just doesn't have the time.

No other family nearby. I do have one very close friend, a single mum, who has offered to rent a house with us so that she could also offer care and support, whilst she worked full-time and my husband would be able to held with childcare for her daughter. That would complicate things massively, wouldn't it.

It feels so difficult, as the moment my husband gives up his job, we also lose the roof over our head. And although he could (hopefully) find temping and other work, that would again mean that he was working all hours to try and keep us stable financially, whilst we both melt down emotionally.

Who would i get an assessment of need done by?

Thanks again - it all feels so complicated, desperate and impossible at the moment!

oxcat1

I should also have said, i struggle massively with our house at the moment. I have a bed in the sitting room downstairs as I can't manage the stairs, and I wash at the kitchen sink as we haven't got a washroom downstairs. The council did assess for a disabled facilities grant, but with our income as detailed above, the council would only assist with expenses above £41,000. The quotes came in at £400-6500 to put in a bathroom downstairs, but wee don't have that kind of money.

pmlindyloo

Just to give you some scenarios that you can consider:

1. Your husband gives up work and becomes your carer. He would be able to claim Carer's Allowance and Income Support (the latter as a joint claim) If you have no savings then you would be entitled to Housing Benefit (if renting privately at the local hosuing allowance for a one bed place ) and Council Tax support (called this from April 2012.
2. Since your husband is self employed and is working very long hours he could look for a job as an employee with more fixed hours. Depending on his salary you might be entitled to some help with HB and CTB.
3. Your friend could apply to be your carer and receive Carer's allowance for you. This could be difficult if you have spells in hospital more than 28 weeks as your DLA would stop and her Carer's Allowance would stop. She would not have to live with you to be your carer.
4. You could apply to go on your local council's housing list. You would receive extra points because of your disabilities.

Obviously this is very complicated and it might be possible to do some sort of combination of these things.

You would benefit from some advice from CAB or a welfare benefits advisor (your local council might have one) to find your best scenario.

With your OH's salary, a rent free house and your DLA you are probably able to manage financially when you are not in hospital so perhaps you need to focus what is the priority - your OH not working so hard? You needing care and your OH not being able to give it with a full time job? Is the rent free house important to you?

I really think you should be speaking to a housing officer at your local housing officer to see if they have any suitable accommodation adapted for your needs.

Of course if your husband did give up his job and claim CA and IS then you would be eligible for more more support as you would be on means tested benefits.

I hope you get the support you need.

Horseunderwater

If you could find a bungalow perhaps in a sheltered housing scheme that had suitable facilities - would you husband be able to cope with caring for you full time at home in those circumstances do you think. Maybe speak to local council about that first because if there is somewhere you could go like that then wet rooms are often easily installed if not already there. If that could be sorted then you could claim ESA income related and you should get the Support group as you have what I would call an end prognosis that would be covered under special circumstances of schedule 3. If you get HRC DLA and Mobility then you would get ESA couples rate with underlying Carers entitlement and Severe disability premium on top so it would be well worth doing, but it would take some sorting out. But at the end of the day - you and he could spend that time together. Rent would be paid and Council tax too possibly even 100% depending on your local council support scheme.

pmlindyloo

Horseunderwater wrote: »

If you could find a bungalow perhaps in a sheltered housing scheme that had suitable facilities - would you husband be able to cope with caring for you full time at home in those circumstances do you think. Maybe speak to local council about that first because if there is somewhere you could go like that then wet rooms are often easily installed if not already there. If that could be sorted then you could claim ESA income related and you should get the Support group as you have what I would call an end prognosis that would be covered under special circumstances of schedule 3. If you get HRC DLA and Mobility then you would get ESA couples rate with underlying Carers entitlement and Severe disability premium on top so it would be well worth doing, but it would take some sorting out. But at the end of the day - you and he could spend that time together. Rent would be paid and Council tax too possibly even 100% depending on your local council support scheme.

Yes, this is certainly another route you could take (claiming ESA) rather than claiming Income Support and Carer's Allowance.

Am not sure which would give you more money. You could put your details into the benefits calculator on www.turn2us.org.uk to find out.

Savvy_Sue

Horseunderwater wrote: »

If you could find a bungalow perhaps in a sheltered housing scheme that had suitable facilities

very very few sheltered housing schemes available for the under 50s. In 10 years time the OP might be able to argue for a place, but in her 30s, unlikely.

Wish I could think of something. but I think your ideas are right: if you don't have much time left, you want to spend it together.

murrayfan_2

Have we mentioned Disability Living Allowance?. You should apply for that, surely. A lot of sheltered housing schemes are for over 50s/55s and/or those who get high rate DLA, mobility component.

Contact your local council for an assessment of needs, and also ask them for an application form for social housing.

sunnyone

murrayfan wrote: »

Have we mentioned Disability Living Allowance?. You should apply for that, surely. A lot of sheltered housing schemes are for over 50s/55s and/or those who get high rate DLA, mobility component.

Contact your local council for an assessment of needs, and also ask them for an application form for social housing.

Read the OP...............

We didnt need too mention DLA, they get high rate of both componants when they are not in hospital above the allowed time.

No sheltered housing scheme I know of define the need for sheltered housing as high rate mobility only.