Lack of Direction

The Problem with Disability

Did I say PROBLEM?

Sorry – I didn’t mean to mislead. It’s simply easier to wrap it all up in one bundle.

Anyway, the problems are copious, thorny, difficult, and complex and should carry a warning: “Don’t try this at home!”

I went from having a satisfying well paid job to a recurrence of my old problem of epilepsy. This was a mortifying experience. I was not long married – and my husband discovered to his dismay that I needed him to be around all the time.

This demoralising situation had not been in the plan for the rest of my life.

Suddenly, I could no longer drive. I could no longer shop. I could no longer walk very far on my own. I could no longer do much voluntary work.  Suddenly, I needed a carer. I needed to find out how the Benefit system worked. (Four years on, I don’t believe anyone knows how it works– it is simply a mystery. The more complicated it can be seen to appear,  the better.)

Refusing to believe that this prisoner state was all that was left to me, I applied for job after job. I applied for everything from Carer to Director with a few voluntary positions thrown in. Not once was I invited to interview – not even from the “two ticks” brigade. I gradually realised I was neither wanted nor needed.

Meanwhile, on this wonderful voyage of discovery, I found that the Benefits System stripped you of all dignity. You had to provide proof of what you had in the bank -your word was not believed. Moreover, expenditure had no part in the equation -merely income.  I don’t know who taught them economics…….

Photocopies of the most private papers were taken. Eventually, it hurt so much, that I ceased to care. I was asked by a Social Worker if I managed the toilet myself. When I objected to the degree of intrusion, I was simply told – “Ah, it’s the forms – everybody complains about them. They don’t work!”

In dire financial straits, with creditors circling ever closer, I was advised to draw down the lump sum from my pension – not the monthly payments. It would help to satisfy the ever-clamouring bunch, and allow me to pay off a few debts.

This turned out to be A BAD IDEA, which caused mayhem, confusion and distress for months.

My bank account was apparently “triggered” when the payment went in, causing consternation on behalf of the DWP that I had funds which had not been declared.

I was informed that I was to be investigated for fraud.

As an Advisor to Strathclyde police (voluntary work) I felt obliged to inform them of the situation. Fortunately, when the investigators arrived, there was only the detritus of a life that had once been productive, caring, and hard-working. A life where I had saved regularly into a pension, which it seemed I was forbidden to have by the “Welfare State”. It was “a change”.

It was no longer my money, my pension or my choice– just “a change” – with which I was trying to hoodwink the Benefits office.

Now, if you have ever received a letter from DWP, it always starts the same way.

“I am writing to tell you that due to your recent change in circumstances….”

It is most confusing. What recent change are they talking about? I am unaware of any change. Why can’t they specify? How can I find out?

One example was: I went on a study course to Cork for a week. I came back to find that I had lost that week’s Benefit. “Why?” I asked disbelievingly. “This was a study course –it had been arranged for some time. It was not a holiday.”

“Cork is not in the UK” I was told, coldly. “It’s in Europe. You have to apply to the EU if you want payment.”

“What if I had gone to Aberdeen?” I asked

“Oh, that’s all right. If you’d said Aberdeen, you would’ve got your money. You’d have been better off saying it was Aberdeen. If that sort of thing happens again, don’t worry about lying about your destination.”

It is an understatement to say that I was gob smacked. That this moribund system could not accept me going for a week’s study course in Ireland was a real eye-opener.

I tried to get an interview, in vain.  “DWP don’t do interviews”,   I’m told

“Jobcentre Plus do interviews, but not about Benefits, because they don’t process the benefit. They’re not Benefits trained”.

So, I braced myself, and tried to have a sensible conversation on the phone with the “Benefits” people. Unable to see the screen that is being used,  combined with the constant abbreviations that such employees hold so dear, led to complete confusion. I was forced to admit defeat, and take their word for it that I was receiving the right money, and if it was not what I understood I would receive it is because of blah blah blah urgblah.

So the phone was replaced – the person at the other end obviously believed that they had explained a basic point – but this belief is only valid if you approach a situation from a position of knowledge.

A comparison would be if I asked: “Where is Peden’s Stone?” and the answer given was: “Near Shotts Prison.” The information is correct.

However, it could take you days, weeks or months to locate it.  The exact co-ordinates would be required accompanied by a description. Nobody would dream of holding a conference with the directions: “It’s in a hotel near King’s Cross, sometime in April.”

Peden’s Stone

But that is how vague the system is…..

Returning to my tale…..Eventually, having won through against accusations of fraud on Income Support, and benefit being reinstated, I was summoned to a medical for my Disability Living Allowance (DLA). Leaving the building on the day of the medical, I was hit a glancing blow by a car reversing down a one way street. (Should an “at home” service be on offer if you are disabled?) However, I digress.

At this medical, it was decided by the “approved health care professional”, (approved by whom?), that my epilepsy would improve and I did not qualify for DLA benefit. This indeed was a wondrous thing to be able to announce. My epilepsy has lasted all my life – since I was an infant. It had retreated on occasion into the background, but it had always recurred. There is no known cure for epilepsy – undeclared epilepsy was grounds for annulment of marriage as late as 1970. It is among the most serious of neurological conditions.

Nobody cared. I was assessed as able. DLA Benefits were stopped.

Several epileptic episodes followed this decision – though whether related to the stress of lack of income or not, I am unable to prove. The most serious event was in the kitchen, when, without warning, I had an attack and split my head badly.

The decision that I was not disabled was taken to a Tribunal, which was not held for eight months, despite my repeated and increasingly desperate calls for action..Eight months without DLA benefit – eight months of mounting bills. The hearing was over in minutes and my appeal was successful.

I was repaid all the money that was outstanding. However, the work and stress involved in making a case that is already well documented, was incredible. Are they unaware that this kind of stress only makes epilepsy worse? I would hazard a guess that this holds true for many other conditions. Because of the lack of payments, the vultures had started circling again….I had to try to clear the bills that had mounted up. The system merely ensures that you are kept disabled – or that your condition is aggravated. The system guarantees that you can never have any money. I spend my nights wondering what I can afford. What do I need?

I need money to sort the roof, for a chiropodist, to repair my cooker, to fix the dampness in the bedroom. I need money to pay someone to help me, so my husband gets a break. But I don’t qualify for a carer.  I have a husband.

Having worked all my life for this country, I innocently believed I would receive help when I needed it. My difficulties have now been taken to anybody who would be vaguely able to help – from my MP to Social Workers. Everywhere I hear the cry:

“The system is not fit for purpose. It’s a mess.”

Moreover, I would add, it’s a very expensive mess. DWP confidently say: “Don’t bother taking it to your MP – nobody can fix it!” They may be right. Today, 21st of January, 2010,  I managed to prise the Incapacity Benefit from Coatbridge’s Benefit department. When were they due to pay me? November LAST YEAR. Why did they not pay me for ten weeks?  It was an error with the system. Survive Christmas without cash – and have a Happy New Year! (We mean that most sincerely, folks!)

© Linda Jane McLean


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