Disabled but still work-guidance please!

PleaseHelpUs

Hello

I am hoping that maybe somebody can help our situation. I will give some background. My husband and I are 40 and a daughter at Uni. We have always worked, but I was diagnosed around 5-6 years ago with a progressive illness and since then several other illnesses have been added. My illness as I loathe the label disabled will eventually kill me.

My husband has worked from home to care for me for about 18 months now to earn a wage and also to prevent extortionate care fees we would be charged, but I do have some help from a PA that I pay for out of my DLA to give him a little respite a few hours a week. I have a degree and my husband was a builder beforehand and between us had a very good income. Now its not about the money and I am pleased that our daughter is at Uni and we contribute what we can when we can.

I run my business from bed most days which is internet based but not turning much profit at all. Between the two of us, our income is quite low, but manageable.

I went onto a website last night and when I put our income in, it stated we could receive £135pw in credits as well as help with the rent? Last week I had my Occupational Therapist here as ramps and level access doors to the front and back of house have been approved along with a specially adapted powerchair for me as my spine is crumbling along with other reasons. She was quite shocked when we stated we both were still working and suggested this website. When I put in that neither of us worked, we were entitled to another £120+ a week. Is this correct? Also my husband could claim a Carers benefit? I have a stairlift and wet-room.

I don't know what to do as I don't want to just give up and neither does my husband. Please can anybody suggest options for us? Its not that we don't want to work as we do, but currently, my husband is looking so tired-he has to help me with everything from washing, cutting food up, dressing, don't have much dexterity in hands etc along with his work. His work can fluctuate on a weekly basis with both hrs and income, my income is quite negligible, but keeps me sane!

We have a motabilitiy car, and the rest of my DLA (high) is spent on the PA weekly, cleaner fortnightly, extra fuel for hospital visits-under 6 consultants, special items I need and the extra gas and electric, so its not spent on luxuries.

Our savings have dwindled and I think we have maybe £1400. We don't have take-aways, eat well and allocate £35 a week on groceries. We have no debt. Our house insurance is £120 a year, we locked into a good deal with the fuel and water is about £25 a month. We have a sky bundle but no movies etc and this covers line rental, fibre broad band, calls and basic sky for £42 a month. We don't smoke and save up Tesco clubcard and convert to Cafe Rouge for the odd special meal out. Our outgoings are minimal.

To be honest, Ive always been one of the people who moan about people claiming this and that when there is clearly not a lot wrong with them and it infuriates me when I try to get on with my life and not do this even being counted as "terminal" as one of my illnesses will eventually kill me.

Is it possible we would be better off claiming a benefit? I just don't want to have the stigma of being on benefits.

Thank you for reading.

elsien

First off forget the stigma of being on benefits. You receive DLA, so technically you're already on benefits so I guess you mean more not working and living off benefits. The way I look at is that the system is there to help those who need it, you've paid in, if you need it there really shouldn't be any stigma attached. (Unless you're a Tory politician or a journalist for the daily mail.)


In terms of working out your options, have you looked at the entitled to website? If your husband doesn't want to give up work, but is able to limit his hours (I don't know how practical that would be in his job?) you could put some figures in and play around with different scenarios to see what the financial outcomes are and decide what's best for your circumstances.
Ditto your own work - it may not be profitable but if it keeps you going then it's worth more than the money you get from it.
Are you not entitled to any sort of personal budget/direct payment from social services to help with your care, or are those the extortionate care costs you were referring to earlier?

pmlindyloo

PleaseHelpUs wrote: »

Hello

I am hoping that maybe somebody can help our situation. I will give some background. My husband and I are 40 and a daughter at Uni. We have always worked, but I was diagnosed around 5-6 years ago with a progressive illness and since then several other illnesses have been added. My illness as I loathe the label disabled will eventually kill me.

My husband has worked from home to care for me for about 18 months now to earn a wage and also to prevent extortionate care fees we would be charged, but I do have some help from a PA that I pay for out of my DLA to give him a little respite a few hours a week. I have a degree and my husband was a builder beforehand and between us had a very good income. Now its not about the money and I am pleased that our daughter is at Uni and we contribute what we can when we can.

I run my business from bed most days which is internet based but not turning much profit at all. Between the two of us, our income is quite low, but manageable.

I went onto a website last night and when I put our income in, it stated we could receive £135pw in credits as well as help with the rent? Last week I had my Occupational Therapist here as ramps and level access doors to the front and back of house have been approved along with a specially adapted powerchair for me as my spine is crumbling along with other reasons. She was quite shocked when we stated we both were still working and suggested this website. When I put in that neither of us worked, we were entitled to another £120+ a week. Is this correct? Also my husband could claim a Carers benefit? I have a stairlift and wet-room.

I don't know what to do as I don't want to just give up and neither does my husband. Please can anybody suggest options for us? Its not that we don't want to work as we do, but currently, my husband is looking so tired-he has to help me with everything from washing, cutting food up, dressing, don't have much dexterity in hands etc along with his work. His work can fluctuate on a weekly basis with both hrs and income, my income is quite negligible, but keeps me sane!

We have a motabilitiy car, and the rest of my DLA (high) is spent on the PA weekly, cleaner fortnightly, extra fuel for hospital visits-under 6 consultants, special items I need and the extra gas and electric, so its not spent on luxuries.

Our savings have dwindled and I think we have maybe £1400. We don't have take-aways, eat well and allocate £35 a week on groceries. We have no debt. Our house insurance is £120 a year, we locked into a good deal with the fuel and water is about £25 a month. We have a sky bundle but no movies etc and this covers line rental, fibre broad band, calls and basic sky for £42 a month. We don't smoke and save up Tesco clubcard and convert to Cafe Rouge for the odd special meal out. Our outgoings are minimal.

To be honest, Ive always been one of the people who moan about people claiming this and that when there is clearly not a lot wrong with them and it infuriates me when I try to get on with my life and not do this even being counted as "terminal" as one of my illnesses will eventually kill me.

Is it possible we would be better off claiming a benefit? I just don't want to have the stigma of being on benefits.

Thank you for reading.

This is quite complicated - sorry!

May I suggest that you visit CAB and ask for a 'Better off' calculation?

At the moment, if you are on a low income, you are probably entitled to housing benefit, council tax support and maybe working tax credits.

If you both gave up work then your husband could claim Carer's Allowance which then could be topped up by Income Support for both of you and you would get HB and CT support.

Or you could put in a claim for Employment Support Allowance and your husband could be added to your claim. Again you would receive HB and CT support.

You (ie. the claimant for ESA) can do some Permitted Work whilst on ESA but there are limits to how much you earn.

There are other scenarios too!

Don't worry if you don't understand this - just wanted to show you that there are various options open to you and why you need a 'Better off calculation'.

pmlindyloo

I think you need to decide whether you want to continue working (how much are you earning on an average and how many hours in a week?) and whether your husband wants to continue earning (how much does he earn on an average?)

Once you have made this decision then it will be easier to decide what benefits you could claim.

So, what would be your ideal situation as regards working?

Mojisola

PleaseHelpUs wrote: »

I was diagnosed around 5-6 years ago with a progressive illness and since then several other illnesses have been added. My illness as I loathe the label disabled will eventually kill me.

My husband has worked from home to care for me for about 18 months now to earn a wage and also to prevent extortionate care fees we would be charged

Its not that we don't want to work as we do, but currently, my husband is looking so tired-he has to help me with everything from washing, cutting food up, dressing, don't have much dexterity in hands etc along with his work.

Being a 24/7 carer is a full-time job.

It's very worthy to try to carry on working at the same time but is that really the best thing for his health and your well-being?

You might be better off (health-wise as well as financial) to move onto benefits and use what time and energy you both can spare volunteering for a charity. The benefits system is designed to help people in your situation.

pmlindyloo

Mojisola wrote: »

Being a 24/7 carer is a full-time job.

It's very worthy to try to carry on working at the same time but is that really the best thing for his health and your well-being?

You might be better off (health-wise as well as financial) to move onto benefits and use what time and energy you both can spare volunteering for a charity. The benefits system is designed to help people in your situation.

Excellent advice.

My 'guidance' would be for you both to stop work and your husband claim Carer's Allowance and you put in a joint claim for Income Support. You will also be entitled to housing benefit and council tax support.

Put this scenario/details into the benefits calculator and you will see your entitlements.

PleaseHelpUs

Thank you for the replies. I have put in details that we're not working and husband can claim income support and a carers allowance and we'd be better off by about £100+ per week as all our rent and council tax would be paid.

Also, as my house is disabled adapted with stairlift, wet room and other items, would we be able to get a discount in our council tax?

This seems ludicrous!! Could my husband still do some work and me too as I don't want to give up that little bit that keeps me sane and getting up in the morning? Its all confusing, but have been told that people on this section are the best to ask.

We are both self-employed BTW. Last year neither of us made profit as we had a few things to purchase which wrote off income.

We just want to do anything wrong or have people at our door. Can we still go away if we want too? Would we have to ask permission each time we wanted to go anywhere as I don't think we could live like that. We usually go to an adapted caravan in the UK, not too far away incase I need to get to the hospital, but we were hoping for a nicer holiday next year with it being our 20th wedding anniversary, but don't think we could do that if we moved over to out of work benefits as this doesn't seem ethical to me.

pmlindyloo

PleaseHelpUs wrote: »

Thank you for the replies. I have put in details that we're not working and husband can claim income support and a carers allowance and we'd be better off by about £100+ per week as all our rent and council tax would be paid.

Also, as my house is disabled adapted with stairlift, wet room and other items, would we be able to get a discount in our council tax?

This seems ludicrous!! Could my husband still do some work and me too as I don't want to give up that little bit that keeps me sane and getting up in the morning? Its all confusing, but have been told that people on this section are the best to ask.

We are both self-employed BTW. Last year neither of us made profit as we had a few things to purchase which wrote off income.

We just want to do anything wrong or have people at our door. Can we still go away if we want too? Would we have to ask permission each time we wanted to go anywhere as I don't think we could live like that. We usually go to an adapted caravan in the UK, not too far away incase I need to get to the hospital, but we were hoping for a nicer holiday next year with it being our 20th wedding anniversary, but don't think we could do that if we moved over to out of work benefits as this doesn't seem ethical to me.

First of all council tax.

If you are on Income Support you would be entitled to full council tax support up to the maximium given by the council. This maximum varies from council to council. You would need to speak to your council. Most councils expect working age claimants to pay some of their council tax. (at a certain percentage)

Next, your earnings.

Yes, you can continue to work but any income will need to be declared as you would be on means tested benefits. There is a small disregard for each person.

No one is going to question how you live your life so don't worry about that.

Your OH can earn up to £100 ish a week before he loses his entitlement to Carer's Allowance but he needs to declare this income.

If your self employment realises no profit then you should not see a decrease in your benefits. However, you would have to produce accounts to prove this.

I totally understand why you want to continue working but doing some voluntary work might feel this need.

What kind of work are you both doing?

LocoLoco

PleaseHelpUs wrote: »

Thank you for the replies. I have put in details that we're not working and husband can claim income support and a carers allowance and we'd be better off by about £100+ per week as all our rent and council tax would be paid.

Also, as my house is disabled adapted with stairlift, wet room and other items, would we be able to get a discount in our council tax?

This seems ludicrous!! Could my husband still do some work and me too as I don't want to give up that little bit that keeps me sane and getting up in the morning? Its all confusing, but have been told that people on this section are the best to ask.

We are both self-employed BTW. Last year neither of us made profit as we had a few things to purchase which wrote off income.

We just want to do anything wrong or have people at our door. Can we still go away if we want too? Would we have to ask permission each time we wanted to go anywhere as I don't think we could live like that. We usually go to an adapted caravan in the UK, not too far away incase I need to get to the hospital, but we were hoping for a nicer holiday next year with it being our 20th wedding anniversary, but don't think we could do that if we moved over to out of work benefits as this doesn't seem ethical to me.

Hello there,


I care full time for my disabled son. Whilst I can see where you're coming from on this, you won't be on 'out of work benefits' - if your husband is caring for you for 35 hours a week then he will be entitled to Carer's Allowance which will then become his 'job', if you see what I mean. If your disability/illness restricts your ability to work then you will also not be on 'out of work benefits' because you aren't expected to be able to hold down a job. So please try not to think of this as a bad thing or tell yourself that you shouldn't do nice things and give yourself treats when you can. I'm sure lots of every day tasks are harder for you than they are for someone with good health so you probably work harder than a lot of people just getting yourself set up for the day, if you see what I mean?


I'd like to recommend the Carer's UK website to you. There's a huge amount of information on there about the money your husband can earn on top of Carer's Allowance and it sounds to me as though you might want to think about asking social services for some help - there's info about assessments and practical support. You might be able to get some money to pay for your PA, for example, rather than having to pay the whole lot yourself.


I don't think it's ludicrous that you can get more on benefits than you can working, because neither of you actually earned any money doing it. Benefits are supposed to give you a basic amount to live on; obviously if your job is essentially unpaid you won't bring in even that amount. But from a psychological point of view doing some work, if you can, is probably a good idea - as you say it does give you a reason to get up in the morning and something to focus on and that is a good thing.


But please don't feel that putting a claim in is a bad thing - I'm sure you've both paid a lot in taxes over the years and the whole point of the system is to help people out when they're having problems. The media representation of benefits is appalling and has/is causing a lot of problems for all sorts of people, who, like you, now see it as a shameful thing and avoid claiming things that could make their life a little easier. Remember you don't have to spend every penny they give you, you can always give a bit to charity each month if that makes you feel any better!


Re holidays, of course you can go away. I think you have to notify them if it's longer than four or maybe six weeks (I can't remember) but a standard two week holiday is completely okay. I do get letters every now and again where I have to check information and send it back and I think someone from housing benefit came out once when we first claimed? But you don't get people just turning up in the normal run of things.


I hope you start to feel a bit more comfortable about this and that it all starts to make a bit more sense, it can be very daunting when you first start looking into it all and can be a bit overwhelming, but just try to take it slowly and eventually it will all fit into place. Good luck

Penny-Pincher!!

We've been in a similar position, so please PM me with any questions if too private IYKWIM.

The form filling is lengthy, but its money you're entitled too. Also, you stead that you should be able to receive money from WTC......I would either call or get more info online as this is your money you're entitled to ATM. That would make a difference.

PP
xx