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.
20 comments:
Bendy Girl, do go back and check your DLA award letter. I recently discovered that if the award says you'll be paid "from and including [date]" with no mention of "for x months/years" it is an indefinite award. So you may not need to reapply.
I found this out last week from my welfare rights officer. I won my case, btw - they decided not to force me to go to tribunal and have given me a lifetime award for my epilepsy (hurray!) but I only realised I wouldn't need to reapply when the WRO explained the wording to me.
Great post - never seen such clarity on the benefits system before!
I'm a bit surprised that with your condition that your not on idenfinite award - you may have had a 'less than average' DM processing your case, in which case your probably safe on review and it may be worth appealing your care level. We are in the process of improving the training of DM's and providing them with tools that aid them in assessing cases more intelligently, but there are cultural issues and old habits that are hard to break, so it isn't going as fast or as smoothly as we would hope.
I'd be curious to know what general part of England you reside in to see how that area performs in its award accuracy.
-faceless
Wow lil sis. I hope you don't get done over by the government.
I think most people realise that all the government is doing is hitting the poorest and most needy.
Roll on the next election...but then they are all the same.
Take it easy...Km x
My God I hadn't realised it was all so bloody complicated and there was me ranting about a new government scheme, which if your lucky you might get invited to have CBT to cheer you up whilst you grapple with all of the shite they already throw at you.
pxx
Louise: I'm so pleased to hear about your award, that's fantastic news! Bet it's a real weight off your mind.
Thank you both for the compliment and the advice. Unfortunately my award is definitely not a lifetime or unlimited one. It runs out in 2010. Sigh.
Faceless: TY for the advice. As I said my award runs out in 2010. The funny thing about EDS is that there's no guidance on it in the DM's handbook so it all falls under the chapter on hypermobility instead. Problem with that is that it was written by Prof Grahame (who used to head up the medical advisory board and is also one of the true specialists in bendy people for want of better wording) and his intention was to try and ensure that those with hypermobility syndrome (and meeting the criteria) were able to get DLA. Leaving aside the whole debate about whether hypermobility syndrome is the same thing as EDSIII it isn't much of a surprise to me that the awards are so hit and miss. I know of one woman with hypermobility syndrome who has lifetime mobility and care, cooks as a hobby, irons etc. She lives in the same kind of area as I do, but different PCT. I live in the North West but in my immediate area there aren't high numbers of claimants.
What's a 'less than average' DM? Its great to hear that improved training is being offered, I think it must be a terribly difficult and very stressful job to do. In my dealings with DWP staff for DLA apart from a few noteable exceptions I have found people to be friendly, kind and very helpful, but clearly frustrated. It's a very different experience than income support or incapacity benefit staff.
Big Bro: Eep, I hope not! I don't think this blog is significant enough for the politicians to notice...but if they do they can give me a job! Policy advisor. heehee
I think the other massive worry is how many working people are becoming poorer, but like you say all the parties are as bad as each other! look after yourself, lil sis
Pixie: And that's the living within in it took 3 days to write some sort of sensible explanation simple version! Shocking isn't it!
The scheme you were ranting about is all part of it, keep at 'em! BG x
Bendy Girl, sorry to hear you have a fixed-term award. I'll be very surprised if you don't get reawarded when you reapply. I'd start mustering support now, in your situation, ust to keep your back covered. Of course I'm pleased that I won't need to reapply but it still makes me mad the arbitrariness of DLA. My sister's disabled and housebound yet gets less DLA than I do, even though I can work and she can't. Crazy.
So - you're in the NW. My patch too. Would love to meet you sometime.
This is, by far, the most coherent "rant" I have ever read...the fact it took as long as it did to write is not just a tribute to you personally, but an indictment upon a society which tolerates such governmental abuse...
You know Bendy, I (to my horror) find myself becoming something of a reactionary as I grow older, and you're helping me maintain a sense of proportion...thanks!
And yet Mr Freud felt he could learn everything there was to know about the welfare system within three weeks.
*sigh*
What a brilliant exposition! Many thanks. I am an OAP receiving state pension. In addition I qualify for mobility allowance at the higher rate and currently use it to get a lease car from Motability - it has made such a difference to my life.
Not sure what I'll do when it is due to be renewed, I might go for a powered wheel chair.
I also get the personal care allowance at the middle rate and use it to pay for the things I cannot do myself, the house cleaning weekly, the factoring charge for the sheltered accomodation I am in and the delivery charge from Big Store.
I think this is all good use of the money. Sadly as soon as you say NHS pension (small) you talk yourself out of any means tested allowance!
That explains your position with great clarity and I'm sorry to hear it.
I read your comment on Casdok's blog and I agree - any one can be different, can be severely unlucky in life, or can simply choose to be different. People should not sit in judgement but seek to understand each other.
Hello bendy girl. Thanks for your comment on my page. I stumbled across your blog a few weeks ago and was pleased to be able to read about the real situations of people who most politicians handily throw into one of two boxes- the worthy and the not worthy. Most of the media has shied away from covering these issues in any real depth beyond the political, which is what makes your blog so interesting. I hope many more people become aware of it.
What a brilliant post. One of the main stumbling blocks for politicians is that they take a populist view on these things. Its much easier for them to claim that huge amounts of people are claiming disability benefits because they know their way round the system, than to actually do more for those in genuine need.
Perhaps if more of them from across the political spectrum met people like you BG, then society as a whole would be better for it.
Jim
Dearest Bendy. I feel so badly for you. My wife has ED, although hers has not progressed to the point I'm beginning to understand yours is at. But let me tell you, the attitude of 'How hard can it be' isn't exclusively British. We get it all the time here, as well. And the looks when she parks her car in the 'Handicap Spot' - like why aren't you in a wheel chair - you don't deserve that Placard, you're obviously faking something or other. People can kiss my ass.
great post bendy... I don't like to mention that we are 'on the pension' either..
when I mentioned to a good friend about the possibility of losing our bonus this year. Her response was sympathetic but she also said well . It will be worse for those with proper disabilities..
and this is Because the spouse doesn't look ill and because he is a very proud and determined man.. *sigh*
oh btw I have an award for you..
(((hugs))) kim xxx
hi BSS!
I just wanted to say what a fascinating blog you have - this post in particular.
I've recently written about a disabled lady in America who was being sued by Wal Mart for the medical costs incurred by her when she was under their health insurance scheme. It was shocking - and definitely illustrates that there is more of a 'safety net' for disabled people in England than America.
I was interested by you writing this, though:
"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."
It's interesting because while I was living in England, finally working a reasonably paid middle-class job in the field I'd studied at university, I ended up bringing in £500 a month LESS than you receive in benefits.
I'm not implying anything or suggesting I'm resentful of that. Your disability doesn't just mean you can't get a job and work properly, it also means the most basic things (like stairs) are a trial for you, so I totally support you receiving benefits.
I just found the calculation interesting - because the reason my wife and I left the UK is because we couldn't make ends meet. After tax, rent etc (even living frugally, never going out on a Friday night, going on holiday etc) we ended up earning £100 less than went out in bills each month.
The reason people call those on benefits 'scrounging scum' is because the government's paying for those benefits by taxing the wrong people.
Hi Roland, thanks for your comment. Whilst I quite agree that the government is taxing the wrong people, I'm a little muddled by how you could bring home £500 less a month working full time than I receive in benefits? Being very approximate with the figures (and including non cash benefits) that would have to mean you were only earning about £500 -700 a month. Before tax?
In my planned career I would've been earning a minimum of £35k (outside of London) by now, and probably considerably more.
I'm not surprised to hear you and your wife left the UK, the cost of living is astronomical now.
I don't think the reason that people refer to those on benefits as scrounging scum is to do with the government taxing the wrong people though. I firmly believe it is far more to do with the popular image of those on benefits all being too lazy to work and so scrounging off those who do and high profile cases like Lizzie Bardsley illustrate that well.
Bendy Girl
Hey, Bendy Girl!
I must have miscalculated, or been reading the wrong benefit amounts. I earned more than that, so can hardly imagine how you survive!
Hi Roland,
Out of curiousity how much had you thought I receive in benefits?
As to how I survive, well it's not easy. Day to day is ok, but if anything unplanned crops up it's a major problem. I'm much better off than someone on Incapacity Benefit though as they get taxed on that and have to pay the majority of their council tax.
BG
A big thanks for explaining it so well. The motability car bit - I had an argument with my mother who is of the thinking that we disabled are 'given' a car and we also get the money every month.
Like you, my hubby and I (I'm on dla, he is on incapacity but although really suffers from ill health, he isn't suffering enough to claim dla) have to use my dla to keep the house going. Our housing benefit doesn't cover all the rent (private, not through choice) because we need two bedrooms (although can we get through to the council that we do? Course not!). So, a large portion of dla pays that, the rest of our money keeps us going... nothing fancy but at least we manage.
I'm fighting at the moment to get my care rate reinstated to the high rate, already had to do battle to get it all reinstated as for some reason at first renewal they said 'No'. However, a CAB lawyer has helped but like I say, still fighting.
Both me and hubby worked all our lives from leaving school at 15, neither of us woke up one morning and decided we would be disabled. It's my spine that has done the dirty on me, forcing me to live a totally different lifestyle to what I did and forcing me to claim benefits.
I hate it but as I have other disabilities too - sensory and mentally - there's nothing but 'no, no no' from any prospective employers.
It's no life is it, on the 'pension'? Makes my blood boil when I see newspaper articles saying so-so gets {enter huge amount} and still plays golf, goes on holiday etc etc...
Thank again, it does help somewhat knowing other people are in the same boat.
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