Wednesday, June 16, 2010

A stitch in time can sometimes cost you nine

On Sunday, over lunch, the subject of Disability Living Allowance came up. I know, I know. I need to get out more. But see what happens when I do? In depth discussions about welfare reform. In a Harvester of all places. Which, by the way, did have a disabled toilet. It's just that it was locked so I couldn't take any photos for you. I was all out of 'traipsing around the pub to find a member of staff, to follow to another member of staff, to scratch both their heads about where the key might be' spoons. Must've been the welfare reform debate exhausting me. 

It was lunch with an old friend from university. We both studied law and did reasonably well at mooting back in the day. It obviously made more of an impression on him than it did me as he now teaches law. Mind you, he wasn't the one who got touched up by a senior member of the judiciary. The thing about debating with legal-y types is that you better damn well know your stuff. Otherwise so many holes will be poked in your argument it'll sink without a trace before the starters arrive. 


My friend was curious about Disability Living Allowance. 'Why', he asked, 'in a time of such financial crisis are we paying people just because they are disabled?' 'Surely there's no need for that payment when we have an NHS to provide medical care and local authorities to provide social care?' 


Why indeed? 


Disability Living Allowance is one of the most misunderstood and yet most practical and vital benefits we have in the welfare state. It is NON means tested, so it can be claimed by anyone who meets the required standards for needing assistance with either a care component or a mobility component. 

My legal chum was curious, 'why would we pay rich people this benefit?'* The answer is that we probably don't, in all but a few, rare, cases. Disability is disability, regardless of income level. Whatever one does or doesn't earn, the additional costs arising from disability remain. Had the Cameron's wanted to detail their son's disabilities in the explicit and minute form demanded by the Department of Work and Pensions, Ivan Cameron would have been fully entitled to the highest levels of Disability Living Allowance, his parent's financial wealth has nothing to do with the level of disability he had*. That, and the costs arising from it would be the same whether his parents were on means tested benefits or multi millionaires. In fact, the costs of disability often rise once people are in employment as they require additional care and support to remain in work. 'What if I'm really greedy?' my friend asked 'and I have millions but still want to claim DLA?' I explained that if you meet the qualifying criteria you'd be entitled to DLA regardless of your income, but that if you already have plenty of money you'd be unlikely to want to fill out a form as thick as a novel, giving explicit details about every aspect of your life. How you pee and poop being no exception. 

DLA is one, if not the most difficult benefit to claim as the qualifying criteria are so very strict. For example, to claim the higher rate care component a person must require help for at least an hour during the night, whether that hour is split up into separate periods of help or not. At least an hour a night, for at least 4, probably 5 nights every week. My frequent nightly jaunts to the toilet, dislocating as I go, which often mean falling over, or stumbling face first into a door frame at 4am were not considered enough to qualify for higher rate care. Nor was my airway collapsing sufficient reason for the DWP to think I required someone to watch over me at night.

That all made alot of sense to my friend, so we moved on, as the overall concept of the state paying people money because they are disabled still didn't quite make sense to him on a financial basis. 

To answer that question I had to explain to my friend how the social and health care system in England works. There is an assumption by the wider public that disabled people receive all the support and services they need. That disabled people are provided with a nice little bungalow to live in, paid for by the state, given all the equipment they need by the NHS and endless streams of carer's provided by the local authorities. Occasionally this does actually happen, and not just on the pages of the Daily Mail, but for most disabled people life is a constant battle to receive any support, let alone the Holy Grail of support packages tailored to their needs. 

Local authorities do provide some care, and without a full understanding of the system it's enticing to think that Disability Living Allowance is paying for that care twice. It's only once you fully understand the system that you realise, not only is DLA not paying for that care and support twice over, but in all likelihood it is saving the system a fortune in a similar fashion to the pittance paid in Carer's Allowance. 

The care that local authorities provide is rationed. Again, that sounds good. Until you realise that rationing isn't designed to prevent lazy people exploiting the system. Most local authorities only provide care to those who's needs they define as being 'critical or substantial', and demand payment from the care component of DLA towards the funding. To give an overview of what those categories might mean, my needs are classified by the local authority as moderate, which means I am not eligible for any support. 

So, as someone who can't even sneeze without dislocating a rib I don't receive any support from the local authority, the justification being that I can manage. And, to an extent I can. But I only manage because I receive DLA. The care component of DLA allows me to purchase support, and the mobility component to fund transport costs in whatever way I see fit. I use my DLA for things as diverse as paying someone to provide care, through to the additional heating I need to keep warm, pretty much year round, ready prepared food, physiotherapy or grocery shopping on the internet. At the moment I'm using my DLA to fund the cost of a mobility scooter and the costs of the adaptations needed to allow me to have that mobility scooter at home. Without DLA I would immediately lose my ability to cope by paying for these extras and have no choice but to throw myself on the mercies of the local authority. As would every other disabled person, and as most of us fall into the 'considered to be coping' category that would be an awfully high proportion of disabled people suddenly having to be admitted to hospitals until the local authorities could figure out some way of either providing the support they require or passing off the responsibility to the NHS. The NHS is already vastly overstretched and an influx of the million or so disabled adults suddenly unable to continue coping because their DLA had been removed would cause it to grind to a halt instantly. 


My friend is an extremely astute, self made business man**, who immediately saw the potential consequences and crucially the potential financial impact of removing what could initially appear to be a surplus benefit. His final comment was to ask how people who don't have the benefit of higher education to enable them to understand the complexities of the system cope? 


The deeply distasteful answer is simply; they don't.




*The Camerons did receive non means tested benefits in the form of Direct Payments towards Ivan's care package. This is because, unlike in adult social care, children's care packages are not means tested. David Cameron referred to this support in his 1st speech as PM 
**And highest rate tax payer.

21 comments:

samedifference1.com said...

Great post.

You can take the person out of the mainstream (by giving them DisAbled family or friends) but you can't (always) take the mainstream out of the person.

BenefitScroungingScum said...

SD: I'm not sure I understand what you meant by that comment?

Dave the Dog said...

Good article.
No, I don't understand the comment either?

jenjen1352 said...

Outstanding post. I've got my sights set on a fancy fridge freezer next :)

samedifference1.com said...

Meaning- even people with DisAbled family and friends can and do usually act like all other mainstreamers- by asking 'interesting' questions like why we need DLA.

Mainstreamers who really understand DisAbility are too rare.

Arienette said...

Really really really great post. Really great. I tend to keep the fact that I receive DLA a relative secret, precisely because of this sort of attitude, and because I have a pretty high 'but you don't LOOK sick' factor.
Without DLA we wouldn't be able to pay rent, or afford to run a car (prior to my motability car, which of course I wouldn't receive without DLA either) which would mean my world would shrink so dramatically it's terrifying to comprehend. I wouldn't be able to go to sainsbury's, or visit my husband's family. Most of my trips out to visit friends end in me being picked up in the car so I wouldn't be able to see friends even a quarter of the amount I do know (which is MAYBE twice or three times a month. Not a huge amount for someone who doesn't work and looks after a small baby so doesn't get any adult interaction day-to-day.) I couldn't have afforded to attend to multitude of hospital appointments when I was pregnant, or the 6 or 7 emergency, panicking, middle-of-the-night trips.
Without DLA I wouldn't be able to afford the infrequent splurges on allergy-free foods that keep me sane and happy. I wouldn't be able to afford to buy meat which gives me quick, easy protein which is probably all that's keeping me going most days.
Without DLA My husband would have to stop working and go bck on full-time benefits, which is obviously financial fuckery, as far as the government is concerned. DLA, and a tax-paying, full time worker, or no DLA, and two adults out of work and on HB, IS, JSA, blah blah etc, one of whom would probably need a huge amount of other-support due to malnutrition, isolation, blah blah etc? The £450 odd they give me a month is saving them an awful lot of money.

Obviously I'm not saying anything you don't know already. Just offering up my experience. I live in constant anxiety that they will take my DLA away. The truth is, my condition has improved, probably to the point where I don't qualify for higher rates anymore, but ONLY because of that little bit of extra money. Without it, I can easily see myself reverting back to the situation I was in before.

Oh and I took SD's comment to mean that the 'mainstream' opinion is that we shouldn't pay people just to be disabled, and that even though you can have disabled friends you may still hold the mainstream opinion of DLA?

samedifference1.com said...

Arienette- Yes, that's what it means.

The Shrink said...

A very good, reasoned and interesting post.

And the humorous start had me before you even got in to it, "On Sunday, over lunch, the subject of Disability Living Allowance came up. I know, I know. I need to get out more."

Priceless :-)

BenefitScroungingScum said...

Sd: Thanks for the explanation. My friend wasn't against the idea of the state paying ppl who are disabled, just curious as to the how's and why's.
Very few of my friends would consider me disabled-I'm just me with the various bendy issues that go along with it seems to be how they'd see it...but I'm sure Mike N or the Best Man could comment better than I!

BenefitScroungingScum said...

Dave the Dog and Jen Jen; Thanks!

BenefitScroungingScum said...

Arienette: I'm right with you on that constant 'fear of losing DLA' anxiety :(

BenefitScroungingScum said...

The Shrink: Thank you! I think AA is probably going to be absorbed into local authority budgets, it'd be very interesting to know what you think the potential impacts will be in your particular field?

BTW, If you think lunch was good...you should hear me at parties;)

Gerald (Ackworth born) said...

well said lass, trouble is them that moan never read posts like yours that explain things how they are cos they think they know it already.

Anonymous said...

Yes, disability allowance is essential and probably saves the state money. I would say though that it should be means tested. The extremely wealthy should meet there own costs..and yes, I know that they'd be out of pocket bot if you've got a fortune in the bank or a very large income you should probably look after yourself (in a financial sense, I mean)

I find it surprising that the Camerons, with their considerable wealth would claim. Maybe sometimes it is automatically paid out?

Anyway, you deserve every penny. No begrudging from me.

BenefitScroungingScum said...

Gerald: Thanks. Sadly, that's all too true :(

BenefitScroungingScum said...

Anon: Hello, thanks for that :) DLA is never automatically paid out-mine runs out later this year so keep your eye out for blogs about the application process, it's deeply degrading and unpleasant.
I don't know if the Camerons claimed DLA, but they did receive considerable state funding for the care package Ivan needed.
I sort of agree about means testing, but the costs of disability are so high even high income families with a disabled member (say around the £60k p/a mark) would really suffer if DLA was means tested. If it were to be means tested, the limit should probably be around that income or perhaps higher and so any potential savings wouldn't be worth the administration costs.
Interesting DLA is one of the most underclaimed benefits of all, and every so often you'll see a state funded campaign to inform people about it & get them to claim. Not sure about nowt so queer as folk, seems more like nowt so ridiculous as a politician to me ;)

Arienette said...

I think the 'rich' people who claim DLA are much more likely to claim it because of the associated 'perks' of being a claimant. Off the top of my head I can't list any besides the motability scheme, but I know before I was claiming my Dr's urged me to, they said it would be easier to get help for me if I was claiming DLA. Who knows!

Mary said...

The other difficulty with means-testing is that it's done per-household rather than per-individual.

My DLA is my own individual money, not household money, that I can spend on my own mobility needs without having to square it with anyone.

Will I spend £15 of my DLA on taxi fares to go visit a friend for a chat and a cuppa? Yes, because that money is given to me precisely so that I can go out and about like any other person, despite the additional costs I face due to disability.

Will I swipe £15 from the household budget for those taxi fares to see that friend? No. Eating is more important than socialising.

Will I ask my partner for £15 of his earnings for the same? Not likely. Even though he would probably be willing to give it... even if he could more or less afford it... even though he wants me to have a social life... I would hate going to him with my hand held out. And if I did, I would feel like I owed him.

It completely changes the dynamic of a relationship.

It also changes the act of going to see a friend from being something I have a perfect right to do, to being a favour I have to ask - fast route to social isolation, loss of confidence, and the emergence of mental health issues on top of everything else.

DavidG said...

My personal view is that, as with Child Allowance, there is a good reason for DLA to be a universal, non-means-tested benefit. Maybe means-testing would bring the cost down somewhat (though administration costs make that questionable), but does that really justify the risk that someone might miss out on support they need because of maladministration or some quirk in the system? Ultimately, if we say DLA is there to cover the extra costs of disability, then shouldn't that be true whoever you are?

sad times said...

I've always called DLA a 'cheap to keep' benifit. This confirm it, thanks for your clear explanations.

Jane said...

Brilliant post - shared with my MP who has just today promised to read the Disability Rights UK report in preparation for a chat with IDS!!