Comments in grey are from a benefits consultant who very kindly checked this over for us.
Getting help
· Get help with the forms from the CAB or a disability advisor if you have some support agencies nearby. They will know how to fill in the forms best. Get support from your GP as well.
· DWP have 2 excellent advice packs for applying for Incapacity Benefit and Disability Living Allowance - very well worth getting.
· Here in Scotland we have Personal advisors attached to Jobcentre Plus who you can talk to at any time, I am assured. I have not used this service but a friend returning to work after ME did and found it helpful re advice about benefits. They were very good on finding alternative employment for her but she wanted to return to her career and in the end it just wasn’t possible.
New Deal for Disabled People is a service for claimants of incapacity benefits (IB, Severe Disablement Allowance or Income Support for incapacity) and should be available everywhere. See the person who mentions a job broker below (these are the people who try to match you with a job).
· There is a benefits enquiry line for people with disabilities: 0800 882200 which will be able to give you the most up to date info/leaflets.
Disability Allowances
· There is, or was, something called Disability Working Allowance. It's means-tested but if you're ill and prone to relapse you get paid the weeks when you're not able to work.
This doesn’t exist and hasn’t for some years. The equivalent would be Working Tax Credit (WTC), with which you might be entitled to a disability element if you have a disability which puts you at a disadvantage in getting a job, and are or have been on certain benefits. If you get DLA highest rate care component, you could also get Working Tax Credit severe disability element. WTC is means-tested, but the more elements you are entitled to, the more likely you are to qualify. You must work at least 16 hours a week. Confusingly, tax credits are initially based on your income in the previous tax year, not what you’re earning now – this would take ages to explain, but it means that you can actually be pretty well off when you first go back to work because your tax credits are based on a tax year in which you weren’t working (as long as the increase in income between previous tax year and the current tax year is not more than £25,000, in which case you’re being overpaid!) Having said all that, if you do get WTC, then yes you can be off sick, and whilst you’re getting SSP or short-term lower rate IB you will still be treated as working, so will carry on getting your WTC at the same rate.
· Disability Living Allowance (DLA) is for the increased costs of living with a disability. You can still work and receive it if you have mobility or care/supervision needs
Absolutely! You can still work, do voluntary work, whatever – DLA is for your extra needs, not to replace earnings.
Incapacity Benefit & Permitted Work
· With Incapacity Benefit you can earn a small amount without declaring it (it was £20 but may have changed); then you can also earn a larger sum (up to £78 for up to 16 hours per week) through their 'permitted work' rules for a period 12 months (longer for progressive conditions - i imagine this does not include ME) as a way of easing yourself back towards work. The down side is that after the 12 months you're supposed to either be back in work or back on IB and can't continue with the scheme - I know of someone who was really enjoying her 2 hrs teaching pw but had to give it up at the end of the year as she wasn't able to progress beyond that. If you do come off IB & go back to work, if it doesn't work out within 12 months you can go back to your previous rate of benefit.
Permitted work lower limit is still £20 BUT you must declare ANY such work you do to the Jobcentre!! This is really important. It changed relatively recently and a lot of people clearly still think you don’t have to tell them. You do. This is because you have to tell them anything which might affect whether you are still entitled to benefit. That aside, yes once you’ve told them you can earn up to £20 a week for an unlimited period. In practice it means that the DWP probably won’t let you work more than about 4 hours a week, because otherwise you would be getting less than the minimum wage…. Depending on your age of course. The other earnings limit mentioned is now £86 a week, and this can apply either to ‘supported permitted work’ (ie work specially set up for disabled people, eg by a charity or local authority or an organisation which finds work for disabled people), or permitted work at the higher earnings limit of any kind, for up to 52 weeks, as long as you work less than 16 hours a week. If you come off IB and go back to work, you now have up to 104 weeks in which you can go back to the previous rate of benefit if it doesn’t work out (ie 2 years!).
Permitted work higher limit can be done indefinitely if you have a severe condition (I guess most people with ME will not fall into this group). Also, though it is otherwise limited to 52 weeks, you can have another period of permitted work if at least 52 weeks go by since you last used the provision OR you stop getting incapacity benefit for more than 8 weeks.
· Permitted work rules allow you to do up to 16 hours work a week and keep your Incapacity Benefit...the Disability Employment Adviser at your local Job Centre should be able to advise
· Obviously if you're on means-tested benefits such as income support, housing & council tax benefit these will be affected by anything you earn - which is what makes it not worth the hassle for a lot of people.
If you have joined New Deal for Disabled People or you talk to a Disability Employment Adviser at the Jobcentre they may be able to arrange a ‘better off’ calculation which would help to check whether it is worth the hassle. ‘Better-off’ calculations look at your income and outgoings in both situations (or sometime in more than one situation if, for example, you’re not sure how many hours of work to go for). Having said that, service from Jobcentre Plus seems to vary a lot – some are very good, others less so. CABx, independent advice agencies, disability organisations etc may also be able to carry out ‘better-off’ calculations. Part of your earnings is always disregarded before the means-test is done, but the level of the disregard can depend on what other benefits you get, whether you have children, how many hours a week you work etc etc
· I've been on incapacity since I became ill 10 years ago and recently my health has improved alot to the extent where I do two voluntary afternoons a week, at the time I did just one. I think it is in the way you make it sound, if you stress the effect it has on you afterwards and that it is 'therapeutic' and not something you can sustain I think it can be seen as part of your road and willingness back to recovery, rather than 'evidence' that you are able to work.
· I believe voluntary work is a good way of 'testing the water' and you're allowed to do whilst on incapacity benefit, haven't been on dla, so not sure. I know with IB when you start working, so long as you register, you are allowed 12 months, if during this time you relapse and can't work you automatically go back on benefits, without having to reapply.
As noted above, it is now 104 weeks (ie 24 months).
· Also you can earn a small amount per week (I think about £20). I did some work for my job broker and it was cash in hand. The system is fairer than one thinks.
As above, yes you can earn up to £20 but you must declare any such work
Getting a clear idea of what you can sustain
· The key to returning to work etc is only committing to what you can really sustain, and sustainability means being very clear-sighted about what it's going to be like maintaining commitments if/when you have a rough patch. Unless of course you take on something extremely flexible, so that you only do as much as you feel like.
· Until you have comfortably done ten hours activity a week for six months or so, without a relapse of deterioration in health, you don't have hard data to go on. When I've done part time and voluntary work in the past, I usually have higher expectations of what I can actually achieve. Try contacting your local voluntary work agency and see if you can do 2-3 hours somewhere with the option of increasing, or doing another placement as things improve.
· Advice anyway is to pace yourself with volunteering/working, a little to start with and monitor the effects. Write a job spec. of things that are important to you eg quiet environment, distance to travel, they all make a difference.
If you need to reapply for benefits
· Take into account your bad days. For Incapacity Benefit activities have to take into account repeatability, pain and fatigue, including recovery pain and fatigue. Get a supporting letter from your GP.
There’s lots of case law about fluctuating conditions – the decision should take into account your ‘normal capacity’, and take into account ability to perform any activity over a period of time that gives a fair picture of your condition.
· What I have been advised to do by Action for ME Benefits Advice line is to keep a diary of my symptoms,to send as proof when reapplying for benefits. I have also been getting copies of all my specialist appointments and letters to GP which I will also attach as proof.This seems to have a lot of weight with DWP!
This excellent advice for anyone either applying or thinking of applying for incapacity or disability benefits.
A few other things…..
In pilot areas, something called ‘Pathways to Work’ is running. I say pilot, but actually this now covers up to a third of the country, and by April 2008 it will cover everyone. It involves work-focused interviews (looking at what sort of work people want/could do), other programmes helping people prepare for work (inc condition management programmes and New Deal for Disabled People), and actual financial incentives too, like extra money on top of earnings for the first year if your income is below a certain level.
There’s also a relatively new provision allowing people to do ‘test trading’, ie try out self-employment for up to 26 weeks without automatically being treated as capable of work. But you need to be receiving assistance in pursuing the self-employment, ie from Jobcentre Plus.
As I mentioned, big changes are afoot in incapacity benefits which will get rid of IB as we know it, as well as income support for incapacity. Initially these will apply to new claimants only, but they will bring in existing claimants over time. You could (if you’re interested!) have a look at
www.dwp.gov.uk/welfarereform/incapacity.asp and the links thereon. But the main message for ME sufferers is that it is going to be virtually impossible, I suspect, to claim benefit without either having to look for work or accept that you get paid less than those who do comply with work-seeking. Only those in a ‘support’ group will not be expected to look for work. The decisions on who falls into this group will be based on descriptors, as the current all work test is, but they have been rewritten (we have draft regs already) The new benefit (employment and support allowance) will not be with us until November 2008 at the earliest.
