After I left a detailed comment on his blog, Jackart at a Very British Dude responded with a full post on the subject Benefits, work and incapacity, and as promised here is my response.

I'm actually in agreement with Jackart, we do have a problem with fraud in the benefits system as it stands, although I disagree with him as to the extent for disability related benefits, particularly as using the official statistics from the National Benefit Review conducted into Disability Living Allowance(DLA) in 2004, the actual fraud rate was only 0.5%.

I would also agree with Jackart that we need massive reform of the system, however that's probably where we start to disagree more fundamentally.

Jackart says that disability is in part a state of mind, citing the examples of having met below knee amputees who've run marathons and having played rugby with a man who had one arm and one leg. This unfortunate attitude is something I've experienced myself, typically only from able bodied younger men. Whilst there is a valid point about fear being one of the most disabling conditions of all, Jackart's examples just go to show the lack of understanding of the true nature of disability disaplayed by a great many people. Disability for I'd imagine the majority of people does not mean having the kind of static condition experienced by those who have a traumatic injury resulting in loss of limb or spinal cord injury. Whilst a gross generalisation, overall there is mostly continuity for people with those kind of conditions, their level of disability does not vary wildly from day to day leaving them unable to plan for anything.

I can of course only speak with any kind of authority on how my own condition Ehlers Danlos Syndrome affects me, but if nothing else my experiences have taught me that for many, no matter how strong the state of mind, or how vigorous the fight the complexity of the human body means it will continue to fail regardless of attitude, and will certainly never be capable of being neatly pushed into the kind of boxes governments are so fond of.

As part of the reform of incapacity type benefits Jackart would like to see the definition of 'cannot work' made a very tight one. I disagree, albeit reluctantly, with concerns about fraudsters slipping through, because I know it's impossible to make something as individual as disability fit a tight definition, and that in an overtight definition it will always be the genuine claimants who miss out, the fraudsters, as Clairwil has already pointed out will always be ahead of the game.So, just why is it so difficult for disabled people such as myself to manage to find and sustain paid employment?

As I mentioned in my initial comment, it is impossible to separate out welfare costs from health and social care. Currently many local authorities are so cash strapped they are rationing care, unable to provide support to those who fall outside their own definitions of either ‘critical’ or ‘substantial’. However this doesn’t mean that the person isn’t sick, vulnerable or disabled, there are those in the authorities own definitions of ‘moderate’ or 'low' risk, many of whom are still struggling with basic tasks such as washing, dressing, shopping and getting around. This is having a particular impact on those individuals like myself who were reliant on the government’s much hyped Direct Payment schemes designed to allow disabled people to purchase their own care directly and which could and should be particularly beneficial for those disabled people wanting to work as they allow the individual to employ their own Personal Assistance, but with the rationing of such care leading to widespread cuts it puts another barrier in the way to work.

As I’ve looked at previously there are also major problems with obtaining the correct, or for some, any equipment to help them perform these basic day to day tasks, even more important when care is being cut. One commenter on Jackart’s blog asked how difficult can it really be to wheel someone in to an office, then sit and type for 8 hours. Leaving aside the derogatory and disablist attitudes in the comment it does clearly illustrate the lack of understanding by many of the difficulties disabled people face in every day activities. For a start off, it’s pretty difficult to wheel anywhere if people don’t have suitable wheelchairs, and many don’t with it being standard practice for many NHS trusts not to provide appropriate powered wheelchairs for those who still have some (very limited) mobility, but are unable to self propel themselves in a manual chair. The difficulty for most disabled people however starts much earlier in the day with equipment not being provided by local authorities to assist with such basic tasks as getting out of bed, bathing, washing or dressing, or to help prepare and make food. It’s now typical in many authorities for ‘small’ equipment (ie items individually costing less than a hundred pounds or so) to have to be purchased by the individual, and for the larger items such as bath lifts to be refused on the grounds that it might infringe health and safety for the individual to use them. These of course are really cost cutting measures but it soon becomes obvious that it is neither simple, nor easy to get anywhere, and that for some, being ‘just wheeled’ would be a huge luxury. This blog post has a great explanation of the incredible difficulties faced by many disabled people in travelling to work.

Although we now have legislation supposedly to stop discrimination against disabled people, in the form of Disability Discrimination Act 1995, it is a fairly toothless act, leaving the onus on the individual disabled person to have to take the action, and to prove there has been discrimination.

In my own situation, which is probably far from unique, prior to my diagnosis of Ehlers Danlos Syndrome, after I graduated I spent years working a variety of part time jobs, most of which were individually too poorly paid to even make national insurance contributions (one reason I’m not entitled to Incapacity Benefit now). I wanted to avoid the stigma of being on benefits, leaving part time work my only option partly as I wasn’t fit to work full time and partly to fit with the random and frequent nature of NHS appointments both surgical and rehabilitative. Despite applying for more jobs than I care to remember it was evident to prospective employers that there was a major problem with my health, whether or not I declared I had a disability. Out of the hundreds of jobs I did apply for I only ever obtained two interviews, one for a highly competitive graduate scheme, which during the feedback I was told by my interviewer that I’d given the best interview he’d seen that year and had been recommended for a place, but unfortunately not been successful. He urged me to reapply the following year when I had more of an idea what the situation was with my health, and whether I would need further surgery as he felt sure I would then be successful. Although I was well aware I’d been discriminated against, without a diagnosis at the time I didn’t feel able to do anything about it, and still doubt there is anything I could have done.

Eventually I was successful in getting a poorly paid, low level administrative job. I was overjoyed as it was a way in to the workplace, and unlike now I wasn’t in a situation where, living alone I have to be the sole provider. Unfortunately there were problems from the start, Access to Work did my workplace assessment almost 6 weeks after I’d started work, meaning the old folding table and someone’s discarded chair I’d been using as a temporary measure actually ended up being for months. During the assessment I was told that as they couldn’t get a chair and desk appropriate for my size I would just have to manage on the one they could order, but unfortunately by the time I became so unwell I had to leave my job some 7 months after I’d started, we were still waiting for some of the equipment Access to Work had ordered for me to turn up. As the author of this blog is now finding out this kind of delay with Access to Work is all to common.

I worked in a very isolated area leading to problems with Health and Safety from the outset. A serious dislocation whilst I was in the office alone (as was typical) led to a lengthy period of ‘medical suspension’ whilst we waited desperately for my desk and chair to be supplied by Access to Work, as on that particular occasion I’d only managed to phone for help following a period of unconsciousness alone on the office floor. My employers became understandably increasingly nervous about the risks of having me there, but were unable to find an alternative office and with the failings of Access to Work, my lack of diagnosis and problems with NHS waiting lists eventually I had become so unwell I had no choice but to leave. The most infuriating part being that 12 months later when work and I had hoped I would be well enough to go back, although I had managed to get diagnosed and start myself along the lifelong path of learning how to manage my condition, I still had not received a single one of the recommendations my specialist had insisted upon as urgent, thus pushing the burden back on to the benefits system.

That was all a few years ago now, and it’s only been in the last few months that I’ve been in a position to think more seriously about wanting to work. My GP laughs whenever I mention it to him, he thinks I should concentrate my energies on more important things, but I refuse to accept that at my age I have to spend the rest of my life on benefits because the system is so inflexible.

A few quick sums earlier showed me that I would have to earn a minimum of £700 a month just to pay rent and utilities, not including things like food, petrol, or even council tax, as to work out what that would actually be after deductions for any council tax benefit is nigh on impossible. However accepting that even working 16 hours a week would be an enormous struggle for me, and that unless I could work primarily from home, probably impossible, 16 hours a week on minimum wage of £5.52 works out to £88.32 per week, before any tax or NI deductions, £353.28 every 4 weeks (benefits calculations all being done on daily and therefore weekly rather than monthly basis) Using this rather nifty website I was able to see that at that wage I should be able to get it topped up by tax credits of approximately £77 a week (though there’s no guarantee that’s accurate, and it would certainly change to a lower amount after 12 months) which would still only leave me with around £661 every 4 weeks, give or take a few pence. I would still be entitled to some housing benefit, but it would be reduced, to an amount I wouldn’t find out until I could give specific income details to the benefits agency to do a ‘better off’ calculation, as it seems to be impossible to take the more sensible approach and find out how much someone needs to earn to meet their basic living costs.

None of this of course factors in the likelihood of Disability Living Allowance being removed for starting work, something that isn’t supposed to happen as its non means tested and intended to be for the additional costs of disability, but in practice is all too common, even when claimants are working jobs entirely in keeping with the nature of their care and mobility needs as declared to the DWP. If I were to manage to find any sort of work I could do I would be financially reliant on continuing to receive DLA, not least to provide for the additional expenses associated with having a disability.

For those like myself, disabled at a relatively very young age, currently the choice is stark and leaves me feeling deeply let down by the system. I can either sit and rot on benefits, bored, isolated, not able to access the kind of support I need; work full time, which for me sadly is not an option; or attempt to work part time whilst navigating the maze of tax credits, council tax benefits, housing benefits. Like many disabled people the future does indeed look increasingly frightening when all we can see are services being cut or removed, and the government announcing the numbers they intend to remove from Incapacity Benefits without a hint of realistic opportunity.