Showing posts with label income support. Show all posts

My Working Life

 Today, The Broken of Britain are asking you to take part in our awareness raising campaign about fitness to work, all details here 
My fellow benefit scrounging diarist Sue Marsh has also written a post about her working life, and if anyone would like to do the same, please let us know and we'll add it to our links list over the w/e. 
 
 Employment History (originally posted here) 


I've applied for a job. Gulp. It's been a long time since I've worked, so long it all feels like a lifetime ago. I was 13 when I got my first job, a sunday morning paper round with a bag of papers so heavy I gave up on the idea of a bike after being picked off the floor by several kind strangers, something I did not then forsee becoming a theme in my life. As soon as I turned 14 I graduated to after school shop work, waitressing, babysitting and later the glamour of washing dishes in a restaurant at the weekends. I worked all the way through school and university - like most students of my age group I had more than one job alongside studying nannying, bar work, shop work, whatever I could get.

My first recognised dislocation happened when I was working as a camp counselor in the USA, a couple of weeks after I finished my finals. It was a serious one, in retrospect it was far more than just the shoulder dislocation I was treated for as it also affected my spine and ribs. Surgery to repair my shoulder came at the end of the summer and I returned to the UK to recover a few days later.
I claimed benefits then, reluctantly so, but knowing that I would be without income for at least a few months it was the only option. It was 1998 so a nice lady from the DSS came out to the house, filled the form in whilst I was there and was able to ascertain that the injuries I had were genuine. Those benefits ran out 3 months later, by which time I'd been told I probably needed further surgery to my shoulder, but not to worry, I was young and so could just treat it as a year out then get on with my career.
I got a job waitressing in a busy restaurant but within the first few weeks it became very obvious that I couldn't even carry a single plate without causing my shoulder to dislocate. I stuck at it, thinking my strength would improve but before long my shoulder was getting worse and I reluctantly gave up the job. Giving up that work meant returning to the jobs I'd had whilst at university. I'd worked as a hostess/cashier in a local restaurant and hadn't wanted to return there as the owner really enjoyed sexually harrassing me, but it was work, it paid relatively well and the chefs would intervene, hide me in the kitchen and make me food until I'd finished crying on the occasions the owner went too far. One of the regular customers managed a local veterinary practice and after witnessing many incidences of the boss's idea of humour told me that I absolutely did not have to put up with such abuse and arranged an interview at the veterinary practice he managed. I got the job as a receptionist and was able to leave the restaurant. I also worked 16 hours a week in a video shop earning just under the limit to pay national insurance, although I did for the first time earn enough to pay national insurance when I was working at the vets. They were jobs I could fit in around physiotherapy and hospital appointments and were far easier on my joints than the physically demanding restaurant jobs had been.

The year out turned into another and I found I was still waiting for surgery.  By the time I reached the top of the waiting list there was far more damage to my shoulder than there had previously been, but for what at the time were inexplicable reasons the surgery didn't work as expected and I found myself able to do far less than I'd been able to do before. I just couldn't manage to keep up both jobs and physiotherapy so eventually, some months later I had to give up the job in the vets. By then it was more than two years since I'd finished university, once again I was on a waitinglist for surgery and really panicking about my future. It was impossible to find full time work that I was able to do physically and that would be possible to fit around the random nature of NHS appointments so I continued working 16 hours a week, not earning enough to pay National Insurance and waiting to 'get better'.

'Getting better' never happened, in fact things just got worse and in addition to the physical difficulties I was experiencing I was starting to have serious psychological issues as those around me went from sceptical glances to outright criticism, fuelled by the doctors treating me, some of whom had no qualms screaming at me in front of a ward full of other patients that I was wasting their time and had nothing wrong with me a psychologist couldn't fix. No-one ever did refer me to that mythical 'able to cure everything psychologist', but many, many insisted they would.

I applied for jobs, lots of jobs, anything and everything but I already had several years of health issues and part time work to explain away. Once employers heard that I was on a waiting list for further corrective surgery they were understandably uninterested. I gave up on any kind of graduate job after going through the interview process for the NHS graduate management scheme. I reached the final interview stages and was told by the Chief Executive who interviewed me that I'd given the most impressive interview she'd seen, after which I had been recommended for a place. However, they regretted to inform me I had not been successful and she could only urge me to reapply when 'my health was more settled' following the next surgery as she could not see any reason I would not be successful. I never did reapply, my confidence had been destroyed by then.

The next surgery eventually came, then the next, and a few more for good measure with a few experiemental procedures along the way and before I knew it I was over 25 with a patchy at best employment record, still living with my parents and too unwell to even manage 16 hours work a week. The benefits system had moved on, slightly stern but kindly ladies no longer came out to fill in the forms and check circumstances were as claimed, you just had to figure it out for yourself and wait months while the details on the form were checked. As I was over 25 I was no longer protected by the 'young person's rule' which exempts younger people who've been in full time education from the need for National Insurance contributions to claim Incapacity Benefit. I was 26 and had been working in part time roles that didn't earn enough to pay National Insurance so I fell through the gaps in the system onto Income Support, a distinction that would later prove vital.

I carried on applying for jobs, although my physical and mental health were very poor. After years of failed surgeries and outright disbelief I reached a point where I had no idea whether I was so mentally unwell that I was doing all this to myself and just didn't know. Diagnosis of Ehlers Danlos Syndrome was still several years in my future and I was desperate and depressed. I was fighting a GP who made his view that I was a lying attention seeker abundantly clear and blocked an initial application for Disability Living Allowance.

Finally after being sent to a psychiatrist and widely regarded as lazy and workshy my shoulder surgeon promised that was it as far as surgical treatment options were concerned and one of my job applications offered me an interview. It was a part time, low waged, administrative role in the NHS but I was overjoyed, seeing it as a stepping stone to a career. I was offered the job after interview and started in the February of 2003. Access to Work, the scheme which provides equipment and support to disabled people in the workplace had a duty to assess people within 6 weeks of their start date. My assessment was 5+ weeks after I started working, which doesn't sound much but by then the damage had been done. I was working in a very isolated part of the hospital, alone in an office which was in a locked corridor. I felt far more lonely than I had done when I was out of work with the added complications of an unsuitable chair and an old folding table doing the job of a desk. It had metal edges and cut into my arms as I tried to sit high enough to reach it.

When Access to Work eventually assessed me they came up with all manner of adjustments to make, but as is so often the case I was shoehorned into them rather than the adjustments being customised to my needs. A phenomenally expensive height adjustable desk and special supportive chair were ordered, but the chair was that bit too big and my feet never reached the floor. Despite the high price tag they didn't make chairs or desks that went small enough and I certainly wasn't confident enough to object. I loved being employed but was struggling physically and emotionally which was compounded after a serious dislocation in the office when I was alone meant I remained on the floor for an unknown length of time before being carried out of the hospital I worked in by paramedics taking me to another hospital. 
I was 'medically suspended' after that until the correct office furniture and equipment arrived which took some months. In fact it took so long for all the equipment recommended by Access to Work to arrive that some of it still had not turned up after I'd become too sick to work and had lost my job by September 2003.

Although I'd had more time off sick than I had worked my employers wanted to keep me as they had no concerns with my work or committment to the job. A 12 month unpaid career break was negotiated so that I could return to work at the same grade although probably not the same role once my health had stabilised.

I was diagnosed with Ehlers Danlos Syndrome in February of 2004 by which time I was desperately unwell, in debt, disabled and on the verge of mental breakdown after so many years of disbelief and accusations of malingering. My award letter informing me I'd been awarded Disability Living Allowance arrived the morning I was to travel to London and be diagnosed, the award dated from prior to the loan I'd taken out to survive whilst I had no wages or benefits and would have negated the need for the loan had I known.

The disbelief and disrespect I'd been shown by so many doctors continued to cause problems for me despite being diagnosed by an internationally recognised expert in Ehlers Danlos Syndrome. A rehabilitive programme was suggested but never materialised once I returned to my own area. My shoulder surgeon looked extremely uncomfortable but to his credit apologised to my face for having missed the underlying cause of my problems. Other doctors had left themselves no room for retreat from their accusations towards me and continued to disbelieve me, to the extent that I was accused of having falsified the letter sent to my GP by Professor Grahame after he diagnosed me. It was an impossible situation for all concerned. After I was able to change to a new GP practice this problem was gradually left behind but all the accusations of attention seeking still remain on my medical records.

When my twelve month career break was over I'd still not managed to find a way of accessing any of the rehabilitation methods recommended and had to regretfully inform my employers that not only was I not fit to return to work but that there was no expectation that would change in the immediate future as I was unlikely to be able to access any treatment or support.

That was the last time I worked.

Complaint Letter To DWP About Lack Of DLA Decision




Dear Sir/Madam

Re: COMPLAINT about lack of DLA renewal decision for Bendy Girl

I am writing to complain about my renewal for Disability Living Allowance, for which my current award of High Rate Mobility and Middle Rate Care ended yesterday, 29/11/2010. Despite having returned my renewal form to you in a timely fashion by recorded delivery on 20/09/2010 and including evidence from my carer, my physiotherapist, my best friend who is a policeman  and the support of my GP I am yet to receive a decision. 

The lack of decision is causing me significant hardship. My other benefits  particularly Income Support will be affected as I will lose the premiums I receive in place of carer’s allowance and for the more severe level of disability.  Whilst I understand these will be reinstated and any payments backdated assuming there is a favourable decision about my DLA that is not much help whilst my income is so dramatically reduced for an unknown length of time, especially as I have a significant rent shortfall made up by DLA to cover the cost of having moved from an inaccessible to a more accessible flat. The loss of DLA for more than 4 weeks puts me at very high risk for becoming homeless. I also use my DLA to pay for my carer and physiotherapist as the specialist physiotherapy she provides for people with my genetic disorder is not available on the NHS. The loss of DLA and impact on other benefits, even temporarily, puts those services at risk and means my condition will deteriorate. I am unable to relocate all the dislocations I experience myself, spinal dislocations are especially difficult to relocate alone and of course have the potential to permanently damage my spinal cord. This cold weather means my high heating bills are even higher than usual as it’s so difficult to keep warm when even the slightest movement causes my joints to dislocate. The changes in rules to Blue Badges mean that I am now also without a Blue Badge as they are automatically issued for those in receipt of HRM. Without that I will have to get a letter from my GP, at possible cost to myself, but more difficult is the practicalities of being without a Blue Badge for an unknown period of time. I can ask a friend to take me to the One Stop Shop to renew my badge, but they risk a parking ticket as my blue badge has already run out! 

The stress of reapplying for DLA has been immense. It took me months to fill out my form as my disability only allowed me to complete small amounts at a time. Living with an untreatable, incurable, degenerative genetic disorder is difficult enough, but having to focus on every detail of how that condition impacts adversely on my life to fill out the DLA form has caused me to develop mental health problems as a direct result. 

Each staff member I have spoken to about my DLA renewal has been kind, considerate and helpful. I understand the pressure of the workload is significant and would hate to criticise people who have spent time reassuring me. However, 9 weeks to make a decision should be more than adequate, especially when so much supporting evidence has been provided. Ultimately my condition is untreatable, incurable and degenerative in nature. Continued reassessments are costly both financially and emotionally as well as pointless as for me, there is sadly no hope of recovery. 

I would appreciate it if my case could be directly passed to a Decision Maker for an immediate decision.  I will be contacting my MP if I do not hear from you within 14 days. 

Yours sincerely

Bendy Girl 


Welfare Reform, what we know for sure..

For all the people arriving here looking for answers about disability benefit cuts after Chancellor George Osborne's speech today at the Conservative Party Conference, so far all we know for sure is this;

Universal credit is to be introduced as a replacement for Incapacity Benefit, Income Support, Employment Support Allowance, Job Seekers Allowance, Housing Benefit etc. There is currently no information available on how UC will be set a different levels for different groups but Disability Living Allowance WILL be kept apart from this system. I can only assume that DLA entitlement will be used to indicate different levels of eligibility for the different levels of Universal Credit. Anything else would be impractical, expensive and unworkable*

Benefits will be capped at a level meaning that no family will be better off on benefits than the average family is in work. Families with disabled members were specifically excluded from this cap which is to be welcomed. As yet there is no information available as to what definition of disability will be used. Using the Disability Discrimination Act definition of 'substantial impairment on day to day activities' would presumably set entitlement too widely to be workable so again, I assume that a level similar to that used to assess eligibility for Disability Living Allowance will be used.


*Though that doesn't mean they won't try!

Why Osborne's benefit crackdown won't just hit the workshy, FT.com

Why Osborne’s benefit crackdown won’t just hit the workshy

September 12, 2010 1:36pm
by Alex Barker

There’s been lots of speculation over the Treasury’s plans on sickness benefit. The Times flagged up a proposal to “means test”, while the Observer has a letter pointing to £2.5bn of incapacity benefit savings from an unspecified reform.
No final decisions have been taken. But reading between the lines, it sounds like moves are afoot to scale back “contributory incapacity benefit” (which I’ll explain in a second).

If so, it blows a rather big hole in George Osborne’s claim that a he’ll be finding savings from ending the “lifestyle choice” of those determined to “pull down the blinds” and scrounge on benefits. These reforms largely take money from people who have worked and fallen ill, rather than those who’ve allegedly chosen a life on the “sickie”.
Here’s why. At present there are two broad categories of sickness benefit, which apply to those who’ve been employed for several years before falling ill (contributory), and those who have no significant earnings in recent years (income related).
Abolishing or time restricting contributory incapacity benefit effectively means all those eligible on health grounds would at some point take the means test for “income related” sickness benefit, which excludes those with big savings or a partner who works. When we put together the FT deficit buster, we put the saving at around £2bn from abolishing it altogether.
This makes big savings and gives the same support to the poor. The political downside is that it is seriously unfair to those who pay “national insurance” imagining it gives them a safety net should their health take a turn for the worse.
Cracking down on benefit scroungers always polls well. But I doubt people realise that the “clampdown” may involve withdrawing sickness benefit from a widow with more than £16,000 savings who left work because she was diagnosed with terminal cancer.
The chancellor would, in other words, be taking money from low and middle income households who’ve paid taxes and suffered a health setback. It is the opposite of the workshy, benefit dependent households Osborne targets in his rhetoric.
Given the state of the public finances, the reforms could well be necessary. But it’s probably worth tailoring the rhetoric to match the cut. The headlines look great at the moment, but attacking the workshy may not be as cost-free as Osborne imagines.
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800, 000 claimants face losing their incapacity benefit - The Times, Fri 10 Sept 2010

800,000 claimants face losing their incapacity benefit – The Times, Firday 10 September 2010*

George Osborne: said to be demanding up to £10 billion more from the £170 billion social security budget

Jill Sherman Whitehall Editor

Hundreds of thousands of people are likely to lose sickness benefits under a new assault on the welfare state, The Times has learnt.

The Treasury is considering means-testing incapacity benefit — given to those considered too sick to work — a change under which 800,000 people on modest to high incomes would lose it altogether. The entitlement, which is available to those who have paid national insurance contributions, costs the taxpayer more than £6.5 billion a year and goes to more than 2.5 million people.

Millions of disabled and sick people have been on the benefit — which is between £68 and £96 a week — for years and are able to stay on it until they retire, irrespective of their income or that of their partner.

Disability and poverty groups warned yesterday that means-testing would fly in the face of the principle of paying national insurance to fund benefits. They argued that the disabled and mentally ill were becoming the main victims of the Treasury’s spending cuts.

“It would be grossly unfair if someone who had worked for over 30 years and had paid [national insurance] throughout suddenly found the benefit taken away at the moment they needed it,” said Sue Royston, social policy officer for Citizens Advice.

Iain Duncan Smith, the Work and Pensions Secretary, has agreed to £11 billion savings a year. But George Osborne, the Chancellor, is said to be demanding up to £10 billion more from the £170 billion social security budget. Mr Osborne indicated yesterday that he had already identified £4 billion affecting those on “out-of-work benefits”.

“People who think it’s a lifestyle choice to just sit on out-of-work benefits — that lifestyle choice is going to come to an end. The money won’t be there,” he said.

One Whitehall official told The Times that means-testing incapacity benefit, which could save up to £2 billion a year, was being considered. “We are seeking more on incapacity benefit,” he conceded. “If more cuts are made to the welfare budget we should be able to reduce the bigger cutbacks to other Whitehall departments.”

Other benefits under threat include those going to pensioners, such as winter fuel payments and TV allowances, which could save £2.7 billion if scrapped.

Under the latest plans being considered, those on incapacity benefit — or employment and support allowance, which is replacing it — would receive it for a time-limited period of six months to a year. After this, those on higher incomes — generally those with working partners — would lose the benefit, and those on lower incomes would lose part of it. Those on the lowest incomes would still receive income support.

Mrs Royston argued that people would lose all entitlement to incapacity benefit if their partner had an income of about £8,000 a year or had savings of more than £16,000, if the present rules for other means-tested benefits were applied.

“This is causing enormous concern,” she said. “If someone who has worked for years became seriously ill and his partner earned over £150 a week, he would get nothing, despite his contributions.”

Treasury officials believe that many people remain on sickness benefits until they retire even if they could do some type of work.

Figures from the Office for National Statistics, published this week, show that in more than 840,000 households all members of the household over 16 are too sick to work. In a further 612,000 households, at least one member is too sick to work.

The Government is already clamping down on payments to the disabled and has pledged to introduce more rigorous medical tests for all incapacity benefit claimants by next March, but the Department for Work and Pensions (DWP) is already having trouble finding enough doctors to carry out the checks.

The severely disabled, who receive disability living allowance to help to pay for carers, are also facing medical tests for the first time.

Sources at the DWP yesterday made it clear that negotiations were still going on but did not rule out reducing or scrapping benefits for those on higher incomes. “We are presently looking at a range of options for welfare reform and any decisions will be made in the context of the spending review,” a spokesman said. “Our reforms will ensure that the most vulnerable in our society are protected.”

Richard Hawkes, the chief executive of Scope, the disability charity, condemned the plans to means-test incapacity benefit, claiming that people would be denied the support they had paid for.

“People will effectively be penalised for working hard, saving and contributing to society,” Mr Hawkes said. “The Government has made much of its commitment to ensuring that the impact of cost savings is spread fairly, but this feels like another example of disabled people bearing the brunt of cuts.”

*No link provided as The Times is now behind a paywall. 

I Am On Incapacity Benefits And I Am Scared

"Multi organ failure left me disabled, but I am afraid that the government's plans to slash the welfare bill coupled with 'efficiency savings' at my local council could leave me with no support."

Related blogs:

By the pricking of my thumbs, something wicked this way comes

I see your true colours

I fear the winter and hope for nothing 

Benefits and Work

Nice One Dave!

Page 18, Other Information. IB50 Form
 

Brainblogger on voluntary work

I highly recommend this excellent post from Brainblogger. In it he explains his difficulties maintaining voluntary work with a fluctuating condition and the struggles his employers seem to have understanding the nature of his disability and therefore the need for a flexible approach to tasks.

Brainblogger is like so many of us who want to work rather than rely on benefits, but who's disabilities and the realities of a tough employment market mean that work remains a desire rather than a reality.

ATOS flouts Disability Discrimination Act

via Don't get mad, get equal treatment

It won't come as a surprise to many disabled people to hear that ATOS* are flouting Disability Discrimination law by insisting the £60, 000 pa they pay for doctors to assess benefits claimants** only go to doctors who are free of General Medical Council Conditions. There are various reasons for having conditions imposed on your General Medical Council registration but a significant number of doctors on that register have conditions imposed solely because of their disability.

That means unconditional registration excludes a significant number of disabled doctors. As having a disability does not materially affect your ability to assess people for state benefits the advert cannot specify candidates without a disability, without falling foul of the Disability Discrimination Act.

Not that I'm in any way cyncial...but employing doctors with disabilities to assess other people with disabilities might be thought of as particularly sensible if your priority is to ensure those benefits are correctly assigned. However, if your main priority is to deny those benefits, best keep those pesky cripples well away.

*ATOS are contracted by the DWP to provide assessments relating to certain benefits.
**A common misconception is that an individual's NHS employed GP provides this medical assessment. Whilst the individual's GP is typically asked for information by way of a form, the actual medical assessments are carried out by doctors (usually GP's) employed by ATOS.

Pathways to confusion

On Monday I attended the local job centre for my Pathways to Work interview. Pathways interviews are held in jobcentres with a Disability Employment Advisor (DEA), the idea is to offer support tailored to the individual's particular health condition and concerns with the eventual aim of moving the person into work and away from benefits.

The interview was booked prior to my having the flu, so I didn't think I needed a home visit. I could definitely have done with the day in bed, let alone the home visit, particularly after spending the previous night without central heating. As I'd got muddled up and thought I was going to an Employment and Support Allowance assessment type interview it didn't occur to me to phone and cancel.

Unsurprisingly parking was tricky, though thanks to the blue badge I could park on the double yellows. I was fairly confident that the 'accessible' entrance system would be just as inaccessible as it was two years ago when I went to see the jobs broker. Sadly my confidence was well placed. The intercom is still sited approximately 5feet up the wall, and the token doorbell at a height a wheelchair user would probably have to strain to reach. On arrival you need to push the intercom, wait for someone to answer...and then just wait. And wait. And wait. For the, ahem, age challenged security guard to walk all the way down from the main job centre. Not an easy task if you struggle to stand up. Obviously there isn't anywhere to sit while you wait!

I was already pushed past my limits when I arrived, waiting to get in and going up pretty much finished me off. I was an attractive, grey coloured, shaking wreck when I arrived. I'm really not sure how I avoided hitting the floor face first. I just headed for the nearest seat to reception and focused on that. The staff were extremely kind, and one lady approached me immediately to see if I was ok, bringing me a tissue and some water.

I've previously met my DEA (Hi S!) who is lovely. Unlike every experience I've had with job brokers, the DEA's know their jobs well, understand the benefits system and crucially the kind of support people with health conditions need to move into work, and have the ability to recognise those who are capable of it. I have no idea why job brokers were introduced as they are incredibly expensive and doing the job the DEA's were already doing, except the DEA's did the job far better and more cost effectively.

It's evident I'm not fit for work so we didn't bother discussing what I'd need to make it possible. This DEA is good, but I reckon a cure for EDS is beyond her remit. What we did discuss was something called 'permitted work'. Broadly speaking, 'permitted work' is for people with health limiting conditions who would like to try a certain type of work to see if it's possible for them, without ending up having their benefits sanctioned. The rules state a maximum of 16 hours 'permitted work' a week, and that the work must be relevant to moving into work whilst not contravening the individual's entitlement to an incapacity benefit. So, for someone with learning difficulties it might be appropriate to try a bricklaying course as 'permitted work' but for inappropriate for someone with a back problem. The individual can earn up to £93.00 a week whilst on 'permitted work', although that may have an impact on entitlement to other benefits such as housing or council tax benefit. The 'permitted work' may be continued for a period of 52 weeks, which can be started or stopped if needed. Once the 52 weeks is up the person either has to move into paid employment or if they are unfit to they will remain on benefit but no longer be allowed to do 'permitted work'

It's all a bit convoluted as anything to do with the benefits system is, but basically it's one of the better ideas to help support people into work as it allows for a gradual process. It seemed like a great idea for me to legitimately be able to try to earn some money from writing.

Except...you're only allowed to do 'permitted work' if you are in receipt of Incapacity Benefit. I'm in receipt of Income Support which means I'm not eligible, despite meeting all the same criteria for incapacity. It's incredibly frustrating.

Just not anywhere near as frustrating as seeing tax money spent on duplicating existing services with poorer quality, more expensive services and demonising benefits recipients so no-one cares enough to notice

Gas, gas, gas!

It seems to have been one of those days. Well, one of those weekends actually. It's all a bit of a blur. The Voltarol is definitely a contributing factor, but then so is the pain. Along with the most traditional of reasons to become slightly confused and distracted. No, not dope, that's only traditional for me, but admittedly that's a factor too. You'd worry if it weren't.

So, um, yeah. I'm a bit puddled today. Which might be why it took me a while to notice that although the heating was on, the radiators were getting colder. Towering intellect that I am. I decided it had to be the washing machine stealing the heat from the boiler. Coincidences lead to that kind of non scientific stupid thought process.

Even I managed to figure out the pilot light had blown out on the boiler. I suspect my methods of deduction wouldn't be approved of by Transco. Not that I know what their methods are. I'm currently wondering if I need to turn off the actual gas supply and if so how. I've turned off the timer clock for the boiler so it won't turn on anymore. I don't think. My grasp of the physical world and laws of science being tenuous at best. I did at least manage to ask a neighbour to come and attempt to light the pilot light. He scratched his head a bit, mumbled about being a builder and decided best left.

Fortunately I've learnt to keep a stash of one pound coins in for the electric meter. Without gas central heating I'll have to rely on the fan heaters my landlord sent round, and they eat electricity faster than anything else.

It's my Pathways To Work interview at the job centre tomorrow. Between the inflammed joints, marshmallow tablets and lack of heating it could prove an interesting experience. The irony is I'm not worried about it because I'm so borked they can't possibly find me fit for work! Now, who's willing to bet the access situation is still the same as back in 2007?

The elephant in the room

I'm working on a more in depth analysis of the current welfare reforms, specifically what really needs to be done to reform the benefits system in a workable and hopefully equitable fashion. Whilst that is still in draft form there is one very important point I hope to make. Currently the wrong benefits and the wrong groups of people are being targeted.

Disabled people, on the whole, tend not to be the most noticeable group. Wheelchairs, white sticks or window licking are probably the most common symbols people associate with disability, and are all very visible, albeit possibly not to anyone needing a white stick*. The point being that for most people, linked in their mind with disability are visible symbols. The flaw being that the overwhelming majority of disabled people do not have any visible signs of their disability and then there's a whole other group who do but are too busy being unwell/disabled to be out and about much.

It is easy to see how those common misperceptions could lead to a wider and more sinister misconception that there are very few genuinely disabled people and therefore very few genuine benefits claimants compared to the suddenly all too visible Karen Matthews style minority. After all, aren't screaming Chav mum's with fags hanging out their mouths everywhere clearly draining the very life from hard working tax payers?

As someone genuinely reliant upon the welfare state this constant barrage of abuse against benefit claimants is terrifying. The government promise to get a million people off Incapacity Benefit and into work even more so. That promise relies heavily on the assumption that the vast majority of Incapacity Benefit recipients are either workshy, lazy, fraudulent or a bit 'stressed'. An awful lot are claimed to have a 'bad back' too. The frightening bit is that this is just not a true representation of Incapacity Benefit claimants.

Ironically today the children of courage awards were at 10 Downing Street. Tonight footage of an 'assisted suicide' will be shown on television. Why do we recognise and celebrate the achievements of such children or battle to save babies born at 23 weeks whilst refusing to recognise those children grow up to be adults? Adults with disabilities.

This morning my 'surrogate mum' came round to have a bit of a cry. Her beloved husband, a man who served his country for 25 years and worked for many more is dying. He has cerebellar ataxia. This afternoon I met a mum with her bright, happy, beautiful baby girl. Who is about to be diagnosed with Hirschsprung's disease. I've never met anyone who is fraudulently claiming Incapacity Benefit**, but I know large numbers of young adults who are claiming Jobseeker's Allowance and also working. They leave education and as soon as they are able, living at home with their parents, sign on and work for cash in hand. They won't be affected by the current reform's though. All are on New Deal, all are going through the government mandated jobseeking process and all are committing benefit fraud. It's just not called benefit fraud when you're white, middle class and have taxpaying parents, then it's called 'being entitled to it'.

These current 'reforms' insist upon targeting Incapacity Benefit claimants and single mothers and as such are doomed to fail. At great cost to the tax payer. Those job brokers don't come cheap.

Deciding that it is no longer acceptable for society to pay our young people not to work when they leave school, college or university could work out a hell of a lot cheaper though. If any politician has the courage to confront the real issues instead of demonising the most vulnerable in society that is.

I'm not suggesting benefit fraud is not an important issue. It is, of course it is. Reform of the system is overwhelmingly needed, but more so is an honest discussion of the issues. Namely whether or not we as a country wish to continue providing a safety net to the most vulnerable, and assuming that is the case, how we wish it to work. The current 'reforms' are disingenuous at best and downright fraudulent at worst.





*Yes, you are supposed to laugh. Political correctness helped us into this mess
** I am not suggesting that there aren't plenty. Just not the numbers the govt would like you to believe. Single mothers do not receive Incapacity Benefit.

Feel The Fear

Life as a disabled person on benefits is always a bit of a knife edge, somewhere in the back of your mind is always the possibility that your world will be ripped from underneath you. No-one can live with stress levels like that though, so most of the time it just sits there, underneath day to day life like an impossible to trace bad smell beneath the floorboards. Horrible, but impossible to change so you somehow get used to living with it.

Until something changes and there is no choice but to face it. For me that change came today in the form of finding out the house I live in is to be sold.

I can't begin to describe how frightened I feel. I have no assets, no savings, no income apart from benefits. I can't buy because property is so expensive and even if I could self certify a mortgage on housing benefit in these financially strained times I couldn't afford the £120 + grand I'd need.

I have to move. In itself that's no bad thing as the stairs are a major problem in this property. The issue is finding somewhere I can move to. A phone call to the housing department of the local authority revealed I'd somehow fallen off the waiting list for social housing two years ago. Fortunately the kind advisor I spoke to has managed to reinstate my place so I have 3 years on the list. Which is apparently good for a single person without children.

That's about the only good part. The vast majority of local authority/housing association ground floor properties are set aside for older people. The lowest age they will accept applications from is usually 55 and even if it were appropriate for me to live in sheltered accomodation for the elderly, it is unlikely I'd be allowed to apply. This means that every disabled adult in need of ground floor social housing is competing for the same minute number of properties.

I could rent in the private sector. If I can find a property which will allow a DSS tenant with a pet. And a smoking habit. Most are advertised as no pets/smokers/DSS. I do have the advantage of being a nicely spoken middle class princess, but even if a landlord will put aside all those requirements the amount of housing benefit I receive will be £100-250 below the average market rent in the town I currently live in. Local Housing Allowance will only make that situation worse as it draws from across a much larger area to average out the rents. Basically to force those on benefits to live in lousy areas. I've no idea at this time whether I will be affected by that as well.

I should be able to find a property in a different town for a rent housing benefit will cover, but that will mean losing the support system I've built up over the past few years which in the absence of a formal care package provided by social services is vital. It may also mean having to live in an area which is unsafe.

Vulnerability is a feeling you just have to get used to as a disabled person and one which I ignore for the most part, but all this just highlights to me how incredibly vulnerable I really am. It's not a feeling I like and short of selling my body I don't know what I'm going to do.

Nothing Ever Happens

Frank Field has pointed out the proposals announced today for welfare reform are unlikely to 'see the light of day' and won't make any difference if they do.
I couldn't agree more with his latter point, though not being in possession of the same income as an MP I'm still worried about the former.

The proposed reforms rely heavily on the Pathways programme and use of job brokers as well as the assumption that there really are the mythical 1 million to remove from benefits, the flaws of both have been looked at many times on this blog, and by other more esteemed bloggers than yours truly.

Frankly the whole thing has left me more depressed about the problems facing the benefits system than ever.

No special treatment - The Practical Response

Rather than answer comments individually, for the sake of ease (and my hands) I decided to put it in the form of follow up posts.

I'll start by saying I'm incredibly grateful for everything I receive. If ever I'm feeling a bit sorry for myself I only have to consider how phenomenally lucky I am to be living in a country that considers the financial and social protection of it's most vulnerable citizens to be a duty of the state.

I am ashamed to tell people I'm in receipt of state benefits though. It didn't used to be this way, but the perception that those of us forced to rely upon such help are all lazy, scrounging scumbags has slowly but inexorably become near all pervasive.The main two political parties are almost falling over themselves in their eagerness to ensure the public know they are determined to deal with the problem of idle scroungers with nothing better to do than sit around and watch daytime tv, paid for by decent, honest, hard working tax payer's money. I started this blog largely to try and combat that myth.

Realistically, just like the vast majority of those receiving health related benefits, if I could go out to work I would, after all I didn't go to university to then decide that being on benefits would bring in a far better living than I could ever earn for myself.

So what does the welfare state give me, or you, should you end up in a similar situation? Trust me, I never thought I would.

I receive Income Support. Income Support, not Incapacity Benefit. Important as they are different benefits worth different sums of money and equally importantly different passported benefits. Different benefits, recorded in different ways with different numbers of people in receipt of them. All those people so resoundingly and publicly decried as workshy scroungers, look to Income Support rather than Incapacity Benefit. Why? Simple really. To receive Incapacity Benefit you have to either have been paying National Insurance contributions, or be aged between 16 and 20 (or under 25 if you were in education or training at least three months immediately before turning 20). That's in addition to meeting the various incapacity thresholds themselves. Income Support however is paid to anyone who can't be available for full time work and who doesn't have enough money to live on, typically lone parents, those sick or disabled (who don't qualify for incapacity benefit or do and are lucky enough to be entitled to income support as a top up), students who are also lone parents or disabled, and those in caring roles. Unlike incapacity benefit, if your partner works on average more than 24 hours a week you won't be entitled to any income support.

In addition to the base rate for an adult over 25 which is approximately £59.15, I also receive various premiums because I am considered to be sick and severely disabled thus approximately doubling the basic rate.

I also receive Disability Living Allowance. High rate for mobility, middle rate for care. Disability Living Allowance (DLA) is tax free and non means tested. This is important because it can, perfectly legitimately be claimed by those meeting the criteria who are also working. Its also important because Incapacity Benefit is taxable and those in receipt of it are liable to pay their council tax, whereas Income Support is not taxed and those in receipt of it receive council tax benefit.

The higher rate of the mobility component can, if the recipient chooses, be used to lease (or hire purchase) a car by way of the Motability scheme. I have over the years realised that there is a widespread public misconception that disabled people receive a car from Motability and then the Mobility allowance in addition to that, perhaps to pay for petrol, taxis, or a powered wheelchair. This is not the case, there is one payment in the form of Mobility allowance which can, if the individual chooses be used to lease a car, or purchase a power chair via Motability. It is not enough money to do both. Many disabled people entirely reliant on benefits like myself opt not to use the Motability scheme. This is for various reasons, but speaking for myself I use the money from my mobility allowance to live on, and almost more importantly I am so frightened of the possibility of losing my Mobility allowance on review that I do not dare use the Motability scheme. If that were to happen, I would doubtless be reawarded High rate mobility upon appeal, but as is all too common, I might have to wait up to a year for that to happen, and I could not afford to do that either financially or practically.

High Rate Mobility Allowance means I am exempt from paying vehicle tax. If I used the Motability scheme this would be automatic, but as I don't I have to apply each year. To qualify for free car tax the car must only be used by or for the disabled person, so a married couple could not use one partner's road tax exemption if the other partner was not exempt and for example used the car to commute. In that example they would have to tax the car fully like anyone else.

I receive the Middle rate Care Component of DLA. It is this (or the high rate mobility component) which entitles me to the severe disability premium which is paid onto my income support. Are you all keeping up at the back? DLA is a completely different benefit to incapacity benefit, it is assessed in much greater detail and only awarded to those who meet very tight criteria. My GP was disgusted when he found out I had not been awarded the High rate Care Component. I wasn't surprised. It is worth approximately £20 more per week in DLA and adds another premium to the income support. In a decision typical of the DWP (sorry faceless) I was awarded Middle rate care for the needs they accepted I had during the daytime, but I did not get High rate care because they did not accept those same needs existed during the night. I wish!

David Freud may think it 'ludicrous' that checks are carried out by the individual's GP, but I rather suspect there are a great many GP's out there who would love to have that kind of ability to help their patients instead of being stuck impotently raging against the system, the only power they have to help being a few lines on a form, or perhaps a supporting letter.

In addition to Income Support and DLA I also receive both Housing Benefit and Council Tax Benefit.

Council Tax benefit first because its easier. In my case I receive the full benefit and so do not have to pay any council tax. This is because I am in receipt of Income Support. Were I to be in receipt of Incapacity Benefit like neighbour was, then I would only have part of my council tax paid and have to pay the rest myself. This was one of the reasons neighbour had to move away.

Housing Benefit. I live in privately rented accommodation. Social, or council housing is in crisis throughout the UK. It's simple, after the right to buy introduced by introduced by the Thatcher government people quite understandably took up that right so moving the vast majority of social housing into the private sector. There has never been adequate planning to ensure that the sold housing stock was replenished for the social housing sector so now we have a chronic and desperate shortage of suitable, affordable housing. Everyone in need goes into the same pile, so that nice little bungalow suggested by Vi (and many others in the real world) that the government could provide to help simply doesn't exist. I could, as was suggested by a social worker, move into sheltered housing, but I neither need nor want to live in sheltered accommodation, and certainly have never been able to see why at the age of 28 to be forced into such an environment was in any way in my interests. Even if the social worker did assure me she would do all she could to have the age restriction removed so I would potentially be able to apply to live with the over 65's. That social worker never did understand my lack of gratitude for her most generous offer.

Housing Benefit is of course set at a level considered appropriate to the local area for an average single person, couple, family etc. As far as I have ever been able to work out this level bears no relationship to the true cost of renting, particularly as it factors social rents into its average, regardless of the availability of such properties. My housing benefit is currently paid at approximately £100 per month below the market rent for my home, which in my experience seems about average. I do live in a nice area, but the cost of rent has risen so sharply that I would seriously struggle to find anywhere at a similar cost. I could also perhaps live in a council high rise and hope the lift worked on a regular basis, or perhaps try to negotiate the nightmare of needing a ground floor property, but being under 65, or 55, not having children, having a pet etc. Having previously fought battles with social services and the local authority over care provision and housing I have long since realised that the only result to that is a steep decline in my physical health, and stress levels I am unable to cope with. It is simply easier and more practical to stay where I am.

There is much talk of replacing Housing Benefit with a Local Housing Allowance. This is currently being trialled in a sample of councils and from what I could find, this is an example of the amounts likely to be paid. LHA has been much hyped as a 'good thing' because those in receipt of it who are in cheaper accommodation are entitled to keep the difference without it affecting their other benefits, and those who 'want' more expensive accommodation will have to make up the difference themselves. On a quick calculation to work out the average 4 weekly allowance provided to those in need of a two room property (ie 2 bedrooms) in St Helens (picked randomly from those running the LHA pilot), the total comes to just over £336. A quick search shows an average 2 bed rental property in that area to be around the £395 mark. Never let it be said that I'm cynical, but it seems fairly apparent to me that LHA is just a way to keep paying housing benefits at well below the market rates for rental properties whilst not addressing the real problem of lack of social housing.

Winter Fuel Allowance. Hahahaha, sorry, I need to go away and laugh some more. Right. This is only paid to the over 60's, and by the look of the budget, despite campaigns from various charities there is no change there. In the budget WFA will rise to £250 for over 60's, £400 for the over 80's. Except. If you are in a couple and receive the much hyped Pension Credit you only receive one allowance between you. Ditto for income based jobseekers allowance.
As anyone in receipt of a state pension is eligible, I can only assume that in households where couples are not in receipt of pension credit because they have too high an income that both people receive a winter fuel allowance in what would be a prime example of the injustice and insanity of the benefits system.

As explained here, disabled people under 60 do not receive a winter fuel allowance because they already get disability benefits and premiums on their Income Support. Except if you happen to be on Incapacity Benefit you aren't eligible for those premiums anyway. Oh, and those benefits are worked out, literally to the penny on how much it (supposedly) costs to live, and the additional costs of disability. So that's Mobility Allowance ruled out because that is 'ring fenced' for transport, so long as you don't need to lease both a car and wheelchair. Things like food that doesn't have to be prepared (social services tend to advise a diet of ready meals), any small equipment that your local authority won't cover the cost of, care costs you may have to pay to the local authority or privately because the local authority are rationing care, and many more things I've not listed. That's before (or after) average monthly heating costs higher than a week's benefit for many people.

Hmm. Here comes my cynical side again, but means testing a winter fuel payment is seen as politically unacceptable. Means testing could perhaps provide for those currently said not to need such payments though.

That's the extent of the help provided (to me anyway) by the state. As I said at the start, I am extremely grateful for everything I receive, but, to quote many of my friends "we're not paying so much tax so you can be refused help".

Social Care. Most councils are now rationing this and three quarters only provide support to those whose needs are classed as 'critical' or substantial'. My needs are classed as 'moderate' therefore in my local authority I am no longer entitled to any support. Having said that some of the support is so appalling people are better off without. Cases like this one happen because of the way private companies are paid by social services departments. In the interests of fairness there are many, many superb carers out there who work difficult, demanding jobs for extremely low wages, kept on temporary contracts despite having worked for the same agency for many years. Its cheaper that way. This calculator is a quick way of assessing what help you might receive in certain situations, it's well worth looking at as you may be surprised (or not if you're a regular reader) just how severely disabled people have to be before they qualify for meagre amounts of help.

Equipment. I've previously addressed this in the form of wheelchair provision, but equipment for the home is assessed for and provided by social services Occupational Therapists (OT) rather than OT's employed by the NHS. My experiences are probably quite typical with social services OT's having told me they wouldn't provide a bath lift as I'm too disabled to use it. This is in case of a fall or injury using the equipment which might lead to the local authority being liable. Seemingly denying care and equipment leading to a fall or injury does not incur liability. I can't work out why.

What this does all illustrate quite clearly is just how complex and difficult to navigate the benefits system really is. This morning, whilst a BBC news presenter was interviewing a representative from one of the disability charities about the latest proposed changes to incapacity benefit I heard him describe some of the current tests as 'not much of a a test really, how hard can it be to walk a few hundred yards' Anyone who reads this blog will know that for many people with all manner of different conditions 'walking a few hundred yards' is as big a battle as running a full marathon, but it shows just how all pervasive this attitude of 'how hard can it be' has become.

If I could give just one piece of advice to those politicians who claim they are so determined to sort out the problems of the benefits system it would be this. Until such time you take advice from the true experts, those with a wide range of disabilities and health conditions living day to day within the benefits system, you will continue to fail. Spectacularly.

Relief

It was there this morning when I came downstairs. The brown envelope on the doormat. I didn't realise until after I'd read it and I stopped feeling sick just how stressed I'd been since the whole process started.

It's good news. No medical, no further information required, my incapacity benefit (in reality income support) will continue until a routine review in 2012.

Of course, being the complicated kinda girl that I am, my aim for this year is to somehow figure out how to get off benefit and find a way of effectively supporting myself financially from home. For now though, the relief is indescribable. Up there with looking over and seeing The Captain sleeping on my sofa as I write.

Benefits and Work

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.
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