Squeezing the PIPs

Well, today sees the beginning of DLAs (Disability Living Allowances) being replaced by PIPs (Personal Independence Payments), the moment that disabled people on the whole have been dreading, largely because we're entering unknown territory. To be frank, none of us believe that it is not a cost-cutting exercise. We suspect that the PIP assessors will have been told to be "rigorous" (wink, wink, know what I mean?) and even given reduction targets to aim at. That impression isn't helped by reports that George Osborne refused to face Baroness Tanni Grey-Thompson, the disabled Paralympian, on TV (News report).

(Stop press: Just heard that Margaret Thatcher has died. Her PA who used to live in Stanford was an equally redoubtable woman. She found the young vicar somewhat tiresome but tolerable.)

I have just completed a survey for the MND Association which was asking about how we'd been looked after from before diagnosis and how we'd like to be cared for until we die. It occurs to me that this is at least one disability which usually is so rapidly changing that PIP assessors could no more keep up with it than the hard-pressed health and social care services. You see my brand of MND, Primary Lateral Sclerosis, is astonishingly unusual. It's over ten years since I received my diagnosis. The average life expectancy for MND patients from diagnosis is 14 months, i.e. from the time the doctor tells you what's wrong you're on this dizzying helter-skelter of losing your abilities until you die. The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly. It was quite early on that I couldn't walk unaided, even with a stick. So I receive the highest mobility allowance, which enables us to lease a bigger car which I can get into and out of and we can fit my disability equipment in. It has considerably enhanced my quality of life.

Now imagine someone with a more normal rapid form of the disease. She's diagnosed. The PIP assessor comes round and our patient is still mobile and able to function reasonably at home, but within weeks she's losing her mobility and having falls round the house. Will the PIP fellow drop everything and come and reassess her? What do you think? Will he take her GP's or specialist's word for it? What do you think? On the present performance of assessors such as ATOS (the American multinational IT giant subcontracted by the government to assess suitability to work), it appears that on principle they discount the opinion of those who know the patient and the condition best. (See the Parliamentary Debate). As it is, I have had friends whose motability vehicles have arrived too late, and whose last months of life have been rendered harder than they were already by the slow delivery of service. Many of us fear that with the introduction of new, improved and supposedly more "flexible" system, even more will lose the crumbs of comfort to which they might have had access. And of course MND is not the only condition that involves rapid degeneration.

One after-thought: the disabled are often painted in the media and by ministers as "on the cadge". Of course you may be able to track down one rogue in a thousand. But the 999 would far rather be fit and healthy, able to live a healthy life and be able, like the Chancellor of the Exchequer, to park in disabled bays illicitly. By contrast, I know one driver with a disabled passenger who will actually refrain from using a blue badge, if the passenger is not disembarking. Integrity is not unknown among the disabled community. And what strange official mind dismisses the professional expertise of those who know best? Well, PIPs roll out in Oxfordshire in June. Perhaps then I'll be saying, "I told you so," - or will it be, "I was wrong"? It would be nice if it were the latter.

The disabled to get their Pips squeezed

from Uffington Post

I receive Disability Living Allowance, free of tax and not means-tested, which consists of two components: a) mobility, and b) personal care. At the moment I receive the maximum (of 3) bands for mobility, as I can't walk unaided or drive. That allowance is all used by Motability from whom we lease our car, which we have in order to carry my wheelchair, rollator, and all the clobber associated with my PLS. In due course, when I can no longer manage the passenger seat, it will go towards a roll-on-roll-off version. I have only the middle band of the personal care component as I can still feed myself, wash and toilet myself (given some preparatory help from Jane. Actually I can't pull up and fasten my trousers once they're down!).  The DLA is a great help, as it compensates for a number of extra expenses incurred by my disabled state.

I was advised to apply for it by my physio when my MND really made itself felt. The form is not excessively complex, but asks quite specific questions. It relies on self-assessment and therefore honesty (although I seem to remember having to give details of my health professionals such as doctors, with permission for the Department of Work and Pensions to contact them for verification).

The Government has plans to replace this benign compensation for disability with a new idea, PIPs, Personal Independence Payments, with the aim of cutting the cost (approx. £12 billion and rising) by up to £2.24 billion. It will mean reassessing 2 million claimants with the aim (or hope) of pruning out 500,000. Iain Duncan-Smith, Secretary of State for Work and Pensions, is the man entrusted with handling this sensitive issue. The PM must hope he'll present it with more skill then the Budget fiasco. 

His first attempt, to the Torygraph, as reported in the Huffington Post, is a curate's egg.

"Duncan Smith told the Daily Telegraph: 'We are creating a new benefit, because the last benefit grew by something like 30% in the past few years. It's been rising well ahead of any other gauge you might make about illness, sickness, disability or for that matter, general trends in society.

"'A lot of that is down to the way the benefit was structured so that it was very loosely defined. Second thing was that in the assessment, lots of people weren't actually seen. Third problem was lifetime awards. Something like 70% had lifetime awards, (which) meant that once they got it you never looked at them again. They were just allowed to fester.'

"Duncan Smith defended the reforms which could see people without limbs, including ex-servicemen and women, no longer entitled to disability benefits as their everyday mobility is not undermined by their prosthetic limbs.

"He told the Daily Telegraph: 'It's not like incapacity benefit, it's not a statement of sickness. It is a gauge of your capability. In other words, "Do you need care, do you need support to get around?". Those are the two things that are measured. Not, "You have lost a limb".'

"Ministers are consulting on the new eligibility criteria for the disability benefit system which will be announced in the autumn."

Much of that seems to me reasonable. It's reasonable to want to keep a check on the validity of the initial claims; it's reasonable to keep a weather-eye on their continuing validity. It's true that medical technology can restore people to independent living and it's reasonable that the cost of that technology should be offset by savings on DLA. But there will be additional costs in the task of 2 million reassessments (carried out by GPs or more probably specially employed assessors). And to my recollection the benefit was not "very loosely defined"; in fact the questions were very specific, such as how far could I walk unaided, and could I dress myself, could I cook for myself, shower unaided etc. What I'm dubious about is whether my GP or consultant were ever asked to confirm my answers. (It may be that MND is recognised as a severely disabling condition.) 

I am, every year, at the same time as being informed about the monthly rate, told that I must report any change which might affect my award. It wouldn't be very hard for the DWP to contact my GP to check, if they wanted to. It would probably be cheaper to do that across the board than to set up an entirely new system with a large number of new assessors. 

Bishop: "I'm afraid you've got a bad egg, Mr Jones";
Curate: "Oh, no, my Lord, I assure you that parts of it are excellent!"
"True Humility" by George du Maurier, originally published in Punch, 1895.

I suppose the most rotten part of the curate's egg is the sentence, "They were just allowed to fester." I'm sorry, I'm sure, that the minister regards allowances such as mine as a running sore, a festering wound in the body politic. I can assure him that most disabled people would prefer not to be a burden on the state; in fact they'd prefer to be sound in wind and limb. But it's quite nice to know we're not forgotten and that someone once cared enough to set up a system which, even if it can't erase, can at least ease the experience of disability. 

I sincerely hope that the new PIPs have the same humanity at their heart. (I tried to find pictures of IDS with disabled people, in vain - I wonder why - with the exception of the one above; at least I'm assuming the seated man is disabled - as it's from the Royal British Legion's website. However I did find this one from My Marilyn blogspot, which satirizes my hope....) Will its scepticism proves unfounded? Will the Secretary of State turn out to have the heart of Florence Nightingale?