Wednesday, June 11, 2008

Mind the gap

So, over the last few months there's been a bit of a dip in my health, and work isn't getting any easier. Okay, so work isn't meant to be easy - if it was, they wouldn't have to pay people to do it. But this isn't "work knackers me out so much I can't go clubbing," this is more "work knackers me out so much that half the time it's hit-and-miss whether I can manage to have a shower, even with assistance," and that's really taking things too far. Of my daily "spoons", I'm prepared to hand most of them over for work, but I do need a few left for attending to my essential personal care needs, my bits and bobs of housework, my relationship with Steve, my friends and family, and - dare I suggest it? - a little bit of leisure activity beyond lying in bed sporadically knitting or poking at a laptop computer in between waves of pain. And I really should keep a couple of spoons in reserve for emergencies (like unconscious boyfriends, or mornings at the CAB).

For the last few months, I've been spending spoons I don't have, and reclaiming them by using my annual leave for days off work to recover. That's not sustainable. For starters, I don't have that many days of annual leave, and besides, that's not what annual leave is for. My boss, who is very nice, encourages me to take time off sick if I need it and I have taken some sick days, but I don't want to screw over him, the company, or my own sickness record, by taking a paid sick-day every week. But by pushing my limits like this, I am damaging my health in the long and short term. This cannot continue.

Solution: reduce my regular paid hours, for reasons of ill-health - work four short days a week rather than five. My boss is amenable to the idea; however, now there is a new issue. Since I am on a very low hourly rate, dropping this many hours will mean I no longer earn enough to be paying National Insurance.

National Insurance is very important. If you haven't paid enough National Insurance contributions ("the stamp"), you can't get benefits such as Incapacity Benefit or a state pension. When you have a long-term health condition, it's important to keep this safety net in place. If you are unable to work and claiming Incapacity Benefit, your stamp is paid. If I asked my doctor to sign me off as sick, and I stopped work altogether, I would automatically go back onto the rate of Incapacity Benefit which I was on before I started work. My stamp would then be paid and I would be financially "safe".

But I don't want to stop work altogether, and my doctor agrees that I don't need to stop work altogether. I just can't safely continue working this many hours without damaging my health. I fall into a kind of No-Man's-Land. I looked into voluntary National Insurance contributions, but at £8.10 a week that's out of the question - my earnings would be reduced to below-benefits-level because of working less hours, deducting another £8.10 a week on top of that just makes the whole thing silly. Who should I call to help figure this out? Roll call!

My boss continually assured me that as soon as I knew what I needed from them by way of adjustments, he would get it sorted out for me.

My doctor said she didn't know what the rules were - her specialist field is medicine, not employment, tax or welfare - but she assured me that she would support me with whatever I needed and offered that if necessary she would write me a very specific sicknote detailing that while I needed to work reduced hours, it would be detrimental for me to stop work entirely.

The Incapacity Benefit helpline took a while to understand that I didn't want to stop work completely and then told me they would get back to me with an answer (they never did). They also recommended I call the Disability Employment Adviser (DEA) at my local Jobcentre.

The local Jobcentre DEA, who we've met before, didn't even attempt to help me find a solution when she finally deigned to call me back, but gave me an earful about how "Incapacity Benefit is not a lifestyle choice just because you feel like working less." Happily this is the level of supportiveness and understanding that I have learned to expect from her, so after a few minutes I gave up on my efforts to explain that this wasn't about "choice" or about how many hours I "felt like doing", nor about an effort to "boost my income with benefits", and just let it go.

The local Jobcentre Incapacity advisor said much the same.
"You can work less hours and make voluntary NI contributions."
"But if I work less hours, I will have less money, and not be able to afford NI contributions."
"You can claim Tax Credits if you are poor."
"No, you can't claim Tax Credits if you work less than 16 hours a week."
"oh yes... well, your partner can claim Tax Credits on the basis that he has a low income and a dependent with a long-term health problem."
"My partner's a contractor, we'd have to fill in a new set of forms every week. Besides, it's not that we're poor as a household. It's that I want to pay my own way. I want independence, not to have to rely on him for handouts."
"Benefits isn't independence. Work is independence."
"But I'll be better off on Incapacity Benefit."
"I never said that..."

The CAB told me to contact the doctor, the IB helpline and the DEA at the local Jobcentre. When I said "done that" they were pretty much out of ideas and that I probably had no option but to give up work entirely. I told them I was waiting for a call back from Remploy. They said that was my best bet, then. Oh good.

The bloke from Remploy suggested that if I got back onto Incapacity Benefit, then I would be allowed to do Permitted Work. People doing Permitted Work keep their IB, and can work up to 16 hours and keep up to £88 of their earnings each week. But except in special cases, this is only for six months (after which you either go to full-time, or stop work completely).

I asked if there was a route that was more 'sustaining employment' than 'starting employment'. He told me that New Deal for Disabled People (NDDP) is being phased out and replaced by something called Pathways to Work. Pathways to Work have been active in my local area for about a month via a private company called Working Links. According to my Remploy chap, the staff at Working Links are fairly new to the game (obviously, since they've only been here for a month) and they took over a week to get an answer to him regarding my situation. The answer was that eligibility for help from Pathways to Work is dependent on having been on Incapacity Benefit for the previous 13 weeks. Which I haven't been. I've been working. So I can't have any help, unless I'm prepared to spend a quarter of a year being completely unemployed again and then hope that I can get my job back.

That's not helpful.

The biggest help so far has come from my boss and the company accountant. We've worked out the minimum number of hours I need to work to retain my NI contributions and that is how many hours I will be working as of this week. We've had to tweak a bit, basically from now on I will only be going in four days a week (giving me Wednesdays to recuperate as well as Saturdays and Sundays), but working an extra half-hour on those days. We'll have to see how well it goes. It's still more hours than my doctor and I think I really should be doing but at this stage it's better than completely giving up work.

Here's my options.

Option one: work 17.5 hours a week. National Insurance contributions paid. Take-home pay of about £88 a week, after tax, NI, transport costs etc. Working more hours than my doctor thinks I should. Precious few 'spoons' left.

Option two: work 12 hours a week. Take-home pay of about £57 a week after voluntary NI and transport costs. About the right number of hours work for my current state of health, and enough spoons left over to attend to basic daily needs (eg mountain-climbing: no, grocery shopping: yes).
Edit: I have been informed in the comments that voluntary NI counts towards one's pension, but is not counted for an Incapacity Benefit claim.

Option three: stop work and go back on IB. National Insurance contributions paid. Take-home pay of about £85 a week. All of my time and spoons to myself. However, no colleagues to chat to, no work goals to accomplish, no acceptable answer to the question "so, what do you do for a living?" and precious little self-respect.

What would you do?


erasmus (aka jiva) said...

I'd like a personal word with the DEA woman and I would not leave her alone until she worked through a full flow chart of the situation. I would do this for you too if I was close enough. the beyatch.

Mary said...

The CAB basically did the flowchart thing. I'm just one of the unlucky ones who is falling through a gap in the system. At least, on the bright side, I'm lucky enough that I have enough friends and family to help me muddle through. A lot of people don't have that.

The trouble with the disability employment advisor is her apparent scorn for disabled people in general and benefit claimants in particular. I have no idea why someone like that would go into a job with a remit of helping disabled people through the system. I can't suddenly "be well", and as such I need help to manage the disability *and* the employment aspects in parallel.

BenefitScroungingScum said...

The DEA lady surely only took that job to get off the benefits she was on!?

As for the rest, I wish I had some secret insight for you but unfortunately as you are finding there doesn't seem to be one. The insanity of pathways/NDDP etc is that they are based on getting people into (ultimately) full time work and fail to understand as you've found that for many of those wanting to work the hours req'd are impossible.
You're in the situation I would be if I were to find a job, except I don't have the backup of partner/family that you do. My one piece of advice is not to mess about with NI contributions, working jobs which pay below the limit has stuffed me up pretty much for life with my contributions (or lack of)
The only thing I can think of is aren't there linking rules to protect the benefits of those who've started work and have to go back onto benefits for health reasons. SOmething like within the first 12 months. If you have the protection of that rule, which means your benefits are all reinstated at their previous levels without having to wait, surely you should, theoretically then be able to rapidly switch onto permitted work? Might be worth digging in to as it doesn't sound like any of the 'specialists' have the slightest clue what they're supposed to specialise in!
Good luck, oh, and I'd like to link to this post if that's ok?
BG x

Mary said...

Yep, go ahead and link...

I am protected by a 104-week linking rule - put simply, if my health deteriorates and a doctor signs me off again, then I should go back onto the same incapacity benefit award I was on before, fast-track, without having to do a complete new reapplication.

But according to the advice of the advisors listed in this post, I can't then go straight onto Permitted Work. I have to have been sat at home *just* on IB for 12 weeks (3 months) first. And I can only do Permitted Work for 6 months before I end up in this position again, where I can either not work at all, or be working 'full time'. No middle ground.

Rachael said...

Hi Mary

I am sorry that I don't really know what you should do. I know that's not helpful, but wanted to say that I am so sorry that you find yourself in this situation.

I just wish that they could sort out this all or nothing benefits system that we have and support people like yourself who are clearly trying their best.

All I will say is RE: permitted work. Get everything agreed in writing from the DWP.

All the best

Anonymous said...

great post

well done

just cos the systems nuts dont let them get u down

Mr. Nighttime said...

Sheesh! I watched friends here jump through hoops to get SSDI (Social Security Disability Insurance.) but it seems as though it is even more of a nightmare over by you.....

Fidothedog said...

A very good post. I(or rather my partner had some "fun" with the fine folk in government) have had our run in's.

She found herself out of work, not paid enough stamp before, therefore no monies.

Later on when she was signed off, no monies again due to not enough paid stamp.

I was actually informed that if we split up we would be better off as she would be given some emergency payments!

eeore said...

You've pretty much summed up why the present system is a total mess.

Anonymous said...

It’s a mess all right.

If you have a long-term health condition it’s really very grim. Jumping through the Incapacity Benefit hoops and demeaning kangaroo court medicals every six months, then the wait for your appeal to be heard where your benefit is cut specially low, so it makes it almost impossible to survive the months you have to wait, in which time you have to make some sort of defence for even though you really are ill, is no joke.

I wouldn’t be surprised if there are those that just give up, jump off a bridge or something. I’ve thought about it enough, but it’s not my style. Still I’m just welfare scum – not a lifestyle choice when you become broken, just trying to stay alive… somehow.

Anonymous said...

Hi *waves* I came over from Bendy's. thanks for the link to the "spoons"

The systenm there sounds as crazy as the system here(australia)

cheers kim

Mary said...

Thanks to everyone for the supportive comments.

What makes it extra-amusing is that I'm considered disabled enough that my Incapacity Benefit review in 2007 was for three years. Or to put it another way, if I hadn't bothered with trying to get off benefit and go to work, my "this-is-the-amount-of-money the-government-says-you-need-to-live-on " level of personal income and my stamp were guaranteed until 2010, no questions asked unless I ran for mayor and played football or similar.

Anonymous said...

Oh what a pain! You want an opinion, I'd go for one or two, not three. But then, I'm not you. Perhaps 2 would be the best option; it's probably not very helpful to mess up your health in the long term. But how very frustrating for you. Grr at them. Take care.

DD said...

They really don't seem to get that wanting to work and being fit enough to work are not the same thing. Nor do they appreciate that money isn't the only reason people want to work. I despair, I really do ....

Non Je Ne Regrette Rien said...

hmmm...maybe #3 with some hours of charitable work each week for the socialization/contribution part? (I, too, hopped over from Bendy's).

Nicey said...

Your doing a great job keep on doing what ya keep on doing, chin up and all that stuff
Have a good weekend


Anonymous said...

Is the misanthropic cow who told you "incapacity benefit isn't a lifestyle choice" someone from whom you have any reasonable expectation of getting anything of use in the future, such as might be jeopardised by complaining about her personally to her boss/your MP/anyone who'll listen (besides us out here in webland)?

Mary said...

Dingdingdingdingding and a small prize for Anonymous Saturday, June 14, 2008 10:20:00 AM, who has guessed the exact reason why I do not dare make a formal complaint.

The introduction of ESA instead of Incapacity Benefit, means that if I get any worse, then as well as having to deal with reclaiming benefits and the obvious physical effects of being very unwell, I'll also have to perform Work Related Activity (WRA) in order to get benefit. The adminstration of this varies, as does the definition of what counts as sufficient WRA. I don't know, but I suspect, that being a 'troublemaker' would make WRA very unpleasant.

The first week of Wednesday Off has gone very well, so if I'm very careful I might be able to stay out of the system for a while yet.

Anwen said...

Oh god, it's all such crap, isn't it? I am in a similarish situation, made slightly more complicated but no more STUPID AND CRAP by the fact that I have a kid and a higher hourly rate. I ended up deciding that I will just have to struggle on and hope that I can manage to do 16 hours a week, as basically I am terrified of becoming dependent on the stupid DWP, esp with all this ESA bollocks.

Anonymous said...

Have you thought about becoming self-employed? Seriously. If you stop working as an employee of your current company and begin to do "contract" work for them (for the 10 or 12 hours a week that suit you), you will need only one other "income" - perhaps offering knitwear on-line as a potential income in order to move on to a self-employment basis with the tax man and I know, from personal experience, they will ask you to pay about £2 a week for NI cover. Your contribution stays at that rate till you are earning >32 000 per annum.
Heck if you need "proof" of an alternate source of income, I will offer to buy a sock from you - (only need the one, so half the work required) - what was that? Delivery December 2009? I can live with that. Name your price, post it on-line and I will reply via e-mail.
Hey Presto! You are now self-employed and the NI contributions are less than the cost of a coffee at Starbucks.
The other great side-effect of being self-employed is that you can deduct all sorts of things off your tax return LEGALLY - and much of what currently gets paid to the tax man from your current employment will stay in your pocket. Again, all legal and above board - your employer simply needs to agree to allow you to become a contractor. The only down side would be if your present company offered you great perks like pension schemes and private medical - you would lose those - but if they don't, I can't see a problem.
Hope this helps.

Mary said...

Thanks for the suggestion, Terri... I will give it serious thought but I think it'll have to wait until I have some proper brain-time to figure it out, because at the moment it's just confusing the pants off me.

Although, I like to think that if I WAS able to get my head around all this tax and welfare and aaarg and poo, I would be commanding a much higher wage and doing a job infinitely more interesting than putting the CDs in the boxes.

Or maybe alternatively, if I was to get fully signed off, then the extra daily spoons I'd have for the period between now and my IB award expiring would be enough for me to do a part-time tax evasion course...

marksany said...

Hi Mary,

I came here via Wat Tyler to look at your Remploy post. I also read that you have worked out that you would be better off on benefit than working. Crazy.

1) good on you for supporting yourself, especially when you find it hard to do so.

2)what a crap system. have you heard of basic income? do you think that would be a better system?


Mary said...

Hi Mark

1) Thanks. I'm afraid it's not altruism though - I get a lot out of working, partly in terms of self-respect, but mostly in terms of not having to be stuck indoors staring at the same four walls with no company all day every day. Being off sick could be so much fun if I was only well enough to properly enjoy it...

2) Never heard of it. I'd make a guess that it's some mooted scheme for making sure everyone has a minimum level of income? If you link me to a simple explanation I'll try and give you my opinion, but be warned, the way my brain is being at the moment, that opinion may or may not make much sense.

marksany said...

Basic income = an amount everyone gets, sick or well, old or young employed or not. It would replace all benefits and tax breaks. If you have a job you pay a flat tax on what you get. No reduction in Basic income if you earn. More here

Sadly just a theory, but I am very interested in this subject and I'd welcome your views on it.

Anonymous said...

My concentration's not up to reading all the replies, so if someone has already said this, then please ignore me.

Voluntary NI contributions count towards a pension but *not* towards Incapacity Benefit. Only compulsory contributions count towards that.


Mary said...

NS - crapnuggets. No, I didn't know that. Thank you.

Anonymous said...

If you're not going to be paying NI, then presumably your employer won't be paying employers NI either... and so he *could* give you a small payrise in recognition of that fact (it won't cost them any more they'll just be paying you instead of HMRC).

If it was a nice round tenner a week, you could then pay the voluntary contributions from it.

Naomi J. said...

Just seen this post - I'm behind on your blog as my feed reader is favouritist. (It likes Elizabeth McClung, Benefit Scrounging Scum, and various ranty religious types. No one else. Hmm.) I can empathise with your work dilemma - I've been in a similar one, and ended up having to dump work. Now I am, of course, bored - although slowly returning to a vaguely sustainable level of spoonage (a whole world of eating yogurts and tossing salads opens up to me). I'm looking into volunteering this summer, while trying to get through my reading list. Might not get as far as the volunteering (except for the Greenbelt festival), but we shall see. Best of luck with yours. I found three days a week just about do-able (I did 16 hours). Spreading things out is generally a good bet.