So, we got the forms and I spent years having to fill out all kinds of paperwork so we must nearly be there?
Yeah right.
Firstly the DLA form itself. Only took 5 days for it to arrive. Only? Well this was their super fast service so goodness knows how long it would have taken by 'normal service'. I can only think that they must have been overstocked because rather than just sending me one form two arrived (with a third to arrive a few days later). Well I suppose it's better that than nothing.
So what is the form? Well it's 40 pages long for a start. Fortunately the language isn't too hard (indeed it has a 'Plain English Commission' stamp on the back) but the form itself is a nightmare.
First problem – it is blatantly written with physical rather than mental problems in mind. It is simply not appropriate for mental health sufferers at all.
Second problem – it is far too intrusive. I'm sorry but to judge whether someone needs help I see absolutely no reason why the department of Works and Pensions need details of what drugs are prescribed and at what dosage. It's not as though the forms go to a doctor to be judged – they simply go to someone who follows a form and awards 'points'. And we're only on page 4.
However there is a much bigger problem than that – and that's the fact that my son simply couldn't fill in the form alone. Not only is it a lot of pressure for him to fill in a detailed form correctly, but it's also a very harrowing experience.
His schizophrenia results in him suffering from extreme paranoia and one of the most difficult things in the world for him to do is talk about himself, his feelings about things and their effect. Not only is the form pressing him to relive anything and everything that he finds difficult but also there's the detail. Can't prepare food yourself – well how often and how many minutes each day do you need care with that. Etc etc etc down to how often do you go to the toilet each day!
Fortunately we had the extra form so rather than having to sit next to each other leaning over one form (which he would find incredibly difficult) we were able to sit comfortably with a form each so I could help him fill it in. After an hour the form was done, but that wasn't the end of it.
As I said one of the problems with this form is how he had to relive a lot of difficult things, and more to the point think about what he had problems with. Now surely it's obvious to anyone that making someone suffering from paranoia go through that is a bad thing? And it was.
He changed. For maybe a week he was still affected by filling in the form. He was subdued (more than normal), he was strangely distant, and he had a lot of problems with both eating and sleeping. He has suffered eating disorders before (due to paranoia about the food) and I have to be very careful with him and food but for the best part of a week I was worried that having to think so much about what problems he had was going to be disasterous for him.
Fortunately it wore off and he's back, but how can I explain the worry that I went through whilst he was 'down', let alone what it did to him? Why the hell does someone who is to all intents and purposes completely incapacitated have to go through this? Surely there should be an easier way, especially as he's known to his GP, local Mental health unit, the head Psychologist locally, etc etc. Why can't their simply be a brief form for his GP to sign? I mean as changes to the NHS are going to leave funding in the hands of GP's surely they are trustworthy enough to comment on the disability levels of their patients?
That's just one benefit, now we have another form to fill in for another benefit. I haven't had the guts to even open the form yet because I'm afraid of what we'll have to go through; and also that they want him to be seen by an independent doctor to 'judge' him. How dare they, really how dare they! It took him three months of intensive therapy from a wonderful psychologist to even be able to talk in her presence yet he will have to go and see a stranger!
Oh yes, I didn't mention how long it will take to get an answer re his DLA. Obviously with his benefits being stopped by someone nameless for some unknown reason they'll sort this out quickly. Obviously. Nope – it will take up to three months!
Thank you so much, DWP, for cocking up his benefits in the first place then causing so much disruption and pain in correcting YOUR errors.
Remember – 3 times as much in benefits is unclaimed as is taken in mistakes/fraud. There's a reason many people just don't apply for benefits that they are fully entitled to – it's simply too much for some to actually go through with and that is a disgrace.
xxx
Tuesday 31 August 2010
Friday 27 August 2010
Benefits - everyone's getting them...aren't they?
As a carer sooner or later the minefield of benefits has to be crossed. You may have recently seen figures in the press putting benefit fraud at around £5bn a year so if there's that much fraud it must be easy to get them. Well you'd have thought so...
Firstly that £5bn figure. It's a distortion at best and a lie at worst. Something like £1.5bn of that was actual fraud, the rest being genuine mistakes made by both claimants and by the officials involved. But there's another figure of around £16bn that got little publicity – that is the amount of unclaimed benefits per year. Why so much? Well that's down to the ridiculous system and maybe our current situation goes a little way to explaining that.
Around 6 months ago I applied for carers benefit. My son was on full DLA (Disabled Living Allowance) so I was fully entitled, and frankly the money would be handy (little as it is). I applied and after various delays with them wanting more paperwork from me and other things a few weeks ago I got a 'judgement'. I wasn't entitled to it from the date I applied as it was now too late (!) but it would be backdated three months. Then the shock – I wasn't entitled to anything for that period as my son didn't get a 'qualifying benefit'. What? Two hours, and countless phone calls to different (frankly indifferent) departments later, I found out his benefit had been changed last November (to incapacity benefit) without us being told at all – and no one could explain why. Worse than that the incapacity benefit had been stopped a few weeks earlier as we hadn't replied to a letter we never received. Yup, with our 100% reliable postal system not replying to one letter is enough to stop a handicapped person's benefits. So, rather than finding out what I was going to get I was told that not only was I not going to get anything but also that my son's benefits had been stopped.
OK. Calm down. Breathe.
The local Mental Health department has a benefits helpline so not really having much of a clue about benefits I gave them a call to find out exactly what we should claim. Now you'd thing a helpline connected to a Mental Health department would have a clue, wouldn't you? I made that mistake as well.
Firstly he kept talking about making the claim over the phone. I explained that because of my son's phobias he can't talk on the phone. I was told that he only had to confirm basics and that I could do the rest. I explained that because of my son's phobias he can't talk on the phone. He then told me that was fine as he would only have to confirm his name/address. I explained that because of my son's phobias he can't talk on the phone. But he doesn't have to talk much was his reply. I explained that because of my son's phobias he can't talk on the phone. I also put another head sized dent in the wall.
Eventually he seemed to understand that because of my son's phobias he can't talk on the phone. As there were two different benefits to apply for this meant having to phone and deal with two completely different departments and he gave me both numbers. Ok, getting somewhere.
Knowing what benefits my son could get the next question was what could I get. I was told the only thing I could apply for (until my son's benefits were sorted) was Job Seekers Allowance. I pointed out that surely as that depended on me actually seeking a job what was the point? He said there must be some time I can work as my son didn't need 24/7 care – and this was without him having a clue as to Jr's condition. I pointed out that he did need that level of support so what could I do? Apply for Job Seekers Allowance was the answer again, so again I pointed out that there was no point as I wouldn't qualify. He then started getting stroppy with phrases like 'How can I help you if you don't do what I say?'. I politely asked what was the point of wasting time applying for something that I couldn't get and was told I had to because that was all he knew.
Oh dear. Rather gave up on him.
I phoned the numbers for my son's forms and waited for them to arrive. I've run businesses before so how hard could a little form be?
I'll tell you next post.
xxx
Firstly that £5bn figure. It's a distortion at best and a lie at worst. Something like £1.5bn of that was actual fraud, the rest being genuine mistakes made by both claimants and by the officials involved. But there's another figure of around £16bn that got little publicity – that is the amount of unclaimed benefits per year. Why so much? Well that's down to the ridiculous system and maybe our current situation goes a little way to explaining that.
Around 6 months ago I applied for carers benefit. My son was on full DLA (Disabled Living Allowance) so I was fully entitled, and frankly the money would be handy (little as it is). I applied and after various delays with them wanting more paperwork from me and other things a few weeks ago I got a 'judgement'. I wasn't entitled to it from the date I applied as it was now too late (!) but it would be backdated three months. Then the shock – I wasn't entitled to anything for that period as my son didn't get a 'qualifying benefit'. What? Two hours, and countless phone calls to different (frankly indifferent) departments later, I found out his benefit had been changed last November (to incapacity benefit) without us being told at all – and no one could explain why. Worse than that the incapacity benefit had been stopped a few weeks earlier as we hadn't replied to a letter we never received. Yup, with our 100% reliable postal system not replying to one letter is enough to stop a handicapped person's benefits. So, rather than finding out what I was going to get I was told that not only was I not going to get anything but also that my son's benefits had been stopped.
OK. Calm down. Breathe.
The local Mental Health department has a benefits helpline so not really having much of a clue about benefits I gave them a call to find out exactly what we should claim. Now you'd thing a helpline connected to a Mental Health department would have a clue, wouldn't you? I made that mistake as well.
Firstly he kept talking about making the claim over the phone. I explained that because of my son's phobias he can't talk on the phone. I was told that he only had to confirm basics and that I could do the rest. I explained that because of my son's phobias he can't talk on the phone. He then told me that was fine as he would only have to confirm his name/address. I explained that because of my son's phobias he can't talk on the phone. But he doesn't have to talk much was his reply. I explained that because of my son's phobias he can't talk on the phone. I also put another head sized dent in the wall.
Eventually he seemed to understand that because of my son's phobias he can't talk on the phone. As there were two different benefits to apply for this meant having to phone and deal with two completely different departments and he gave me both numbers. Ok, getting somewhere.
Knowing what benefits my son could get the next question was what could I get. I was told the only thing I could apply for (until my son's benefits were sorted) was Job Seekers Allowance. I pointed out that surely as that depended on me actually seeking a job what was the point? He said there must be some time I can work as my son didn't need 24/7 care – and this was without him having a clue as to Jr's condition. I pointed out that he did need that level of support so what could I do? Apply for Job Seekers Allowance was the answer again, so again I pointed out that there was no point as I wouldn't qualify. He then started getting stroppy with phrases like 'How can I help you if you don't do what I say?'. I politely asked what was the point of wasting time applying for something that I couldn't get and was told I had to because that was all he knew.
Oh dear. Rather gave up on him.
I phoned the numbers for my son's forms and waited for them to arrive. I've run businesses before so how hard could a little form be?
I'll tell you next post.
xxx
Thursday 26 August 2010
What is this then?
Well I'm a 43 year old man with a 22 year old son who happens to suffer from acute schizophrenia and many related anxieties/phobias and I wanted to write about what it is like. To be honest I'm probably going to be writing this more for me than anyone but maybe some people might find it of interest.
I used to run warehousing/distribution type things until my Father and girlfriend both died in a short period of time. I decided to take a year off, not only for myself but also to help my Mother who was finding it incredibly hard to cope, and lived a few hundred miles away from me. It seemed a sensible thing to do (and it was) as I had plenty of savings and taking a year out wouldn't be a problem.
During that 'year out' my son was diagnosed and his problems mounted. Over a short time the symptoms got worse and I had to spend a lot of time looking after him. Eight years later I haven't been able to go back to work since and the savings have gone now so things are difficult. However, whilst being the hardest thing I've ever done, trying to provide and source the best care for my son has also been the best thing I've ever done.
I'm just another carer, and sometimes it's hard.
This blog will probably be a mixture of explaining what we go through, no doubt a healthy sprinkling of outright moaning, and random thoughts about our situation. As I said it's mainly for me but if you find it of interest, or better still it makes you think a little, then that's wonderful.
xxx
I used to run warehousing/distribution type things until my Father and girlfriend both died in a short period of time. I decided to take a year off, not only for myself but also to help my Mother who was finding it incredibly hard to cope, and lived a few hundred miles away from me. It seemed a sensible thing to do (and it was) as I had plenty of savings and taking a year out wouldn't be a problem.
During that 'year out' my son was diagnosed and his problems mounted. Over a short time the symptoms got worse and I had to spend a lot of time looking after him. Eight years later I haven't been able to go back to work since and the savings have gone now so things are difficult. However, whilst being the hardest thing I've ever done, trying to provide and source the best care for my son has also been the best thing I've ever done.
I'm just another carer, and sometimes it's hard.
This blog will probably be a mixture of explaining what we go through, no doubt a healthy sprinkling of outright moaning, and random thoughts about our situation. As I said it's mainly for me but if you find it of interest, or better still it makes you think a little, then that's wonderful.
xxx
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