Law Unto Themselves
Okay so I didn't get the job, which I found out this morning (last Wednesday, your time). A bit of a blow but, after having been employed for the last 7 years, a timely reminder of how tough the job market is, and how much tougher it's got. I was told that there had been three very good candidates and the decision had been hard. Thinking about it now, I wasn't told if any of those three candidates was me.
But enough of that, we have to be moving on. One of the less obvious challenges you often have to meet as a carer is that of administrator. There are a variety of potential reasons why you might have to do most or all of the paperwork. Perhaps the person you care for suffers fatigue, or pain that causes fatigue, which means they struggle with concentration and long forms. Perhaps the have a joint or muscle problem which means that wielding a pen for any length of time is painful, difficult or even impossible. Perhaps they have a learning difficulty such as dyslexia which makes paperwork hard, or even a mental health condition which makes it more or less beyond them. Whatever the case, anyone suffering a disability tends to generate a fair amount of paperwork: appointment letters, medical reports, prescription documents, sick forms and so on. That's before you even plunge into the mire that is getting them the support they need.
Now I do try, wherever possible, to be reasonably generic in this space. I do want to reach out to carers from every continent. But the fact remains that my first hand experiences is based on caring in the UK, so I will have to describe that and wait to see if it is familiar to the rest of the caring world. Suffering from a disability in the UK means my wife is entitled to a regular support payment called Disability Living Allowance. Quite what they expect her to spend it on, I'm not sure. It starts from about £20 a week which certainly wouldn't cover the costs of all the support she needs if I weren't around. Basically, what it amounts to in practise is an offset against the costs she incurs in all manner of ways, buying the right foods, buying support equipment and paying for transport when necessary. What it really means in practise is that she is registered as disabled, and that any subsequent applications for support based on the disability are formally supported. The irony (if that is the right word) is that it allocates money where in some cases the registration would be enough (as the allocation is not based on your financial circumstances) but yet when there is a financial need, the money they spend often isn't enough.
As if that weren't problematic enough, the application process for this funding alone is a minefield. I have probably mentioned the fact before in this column but, to reiterate, we applied for DLA three times and appealed the rejection three times before we finally got R the lower rate of DLA. That took two years of on and off trying. Currently we are trying to get an upgrade of her DLA with the support of a charitable group who help people with benefit claims among other things. The man we have seen so far firmly advised that, as a rule, you should not try and work through these forms without someone who knew what they were doing. Bear in mind that he wasn't touting for business when he said that. He made, and makes, no money from us. It was purely an observation, and one I am happy to endorse. Finding your way through these forms, giving the right answers (putting the truth across in the way that it needs to be) is a hell of a job. This is before you consider applications for grants, for additional allowance, for mobility support. Then of course there is the vexed issue of trying to establish that the person you care for is not fit for work. Or fit for partial work. The Government's business of judging a person unfit to work has, at time of going to press, a terrible reputation. This naturally puts huge physical and emotional pressure on the caree and carer, as well as financial pressure if they can't persuade the relevant authorities to support a person who is genuinely incapable of working. This, of course, is made even worse if the demands of your role are sufficient that you can't work either. This way you must claim benefit, but your ability to claim carers allowance is based in part on how much DLA your caree is awarded. This, I promise you, can take years to resolve. As it stands, our current claim disappeared on its way to the relevant authority. A nice chap called Ray has written to them for us to ask if our application can't be backdated to the date shown on the photocopy of the form we filled in. That was six weeks ago. We need a letter that says ‘yes' or ‘no'. They haven't managed that yet.
Really, this is intolerable. It would be pretty tough for anyone, but for a person with a permanent health condition life is tough enough. For a person looking after a person with a permanent health condition life is also, tough enough. Making the machinery of giving them the support they need so complex and intractable that it makes their lives even tougher is perverse and cruel. So, non-Britons – does this sound familiar to you?