So today is the beginning of a revolution, one that will benefit both the individual and the State; isn’t that what George Orwell’s 1984 was supposed to do? Yes the changes to the replacement for Disability Living Allowance will start to be rolled out for new applicants; existing recipients have until 2015 to get our metaphorical ducks in order so we remain eligible. Esther McVey Minister for Disabled People is currently wallpapering the media in a one woman quest to inform and banish the fears the impaired minority might be harbouring. So why don’t I feel reassured? In part it’s because she sounds just like the entrepreneur (whose name escapes me) behind one of the logistics giants – you know the one, she looks rather like the woman who set up Anne Summers? Putting such humorous random observations on one side it is a bit of a worry not least because of soaring petrol price – don’t even get me started on the able-bodied entitlement MP’s parking in disabled spaces in busy motorway service stations!
For your sake I really hope you never have to complete the 30 plus page form for a Personal Independence Plan (PIP) because you can forget your dignity or privacy because ALL aspects are fair game; but hey this is tax payer’s money so it should surely be spent wisely.
The ITV website has a handy summary of the changes: steps 1-5 are outlined neatly with step 1 being ‘Thinking about claiming; 2 claiming, 3 Telling Your Story; 4 Assessment; and 5 Decision. Step 4 is the one that interests me; will a generic approach be able to deal with the range of very individual circumstances? Let’s face it we all lead our daily lives in our own unique way; something about choice in a democratic society perhaps? Yes unless your life style is being supported by the tax payer – we’ve heard what certain Ministers have had to say about large families – so to what extent is public policy built on personal prejudice?
‘ How will the assessment process (step four above) work?
- Claimants will be assessed on 12 activities. They will receive a points score for each activity, depending on how well they can carry them out and the help they need to do so. The total score will determine whether a claimant is entitled to benefits, and if so, whether at the standard or enhanced rate.
- The 12 activities are: Preparing food, taking nutrition, managing therapy or monitoring a health condition, washing and bathing, managing toilet needs or incontinence, dressing and undressing, communicating verbally, reading and understanding signs, symbols and words, engaging with people face-to-face, making budgeting decisions, planning and following journeys, moving around.
- For example: The assessment will consider a claimant’s physical ability to move around without severe breathlessness, pain or fatigue. They will be scored on whether they can:
- Stand and then move more than 200 metres – 0 points
- Stand and then move more than 50 metres but no more than 200 metres – 4 points
- Either aided or unaided, can stand and then move unaided more than 20 metres but no more than 50 metres – 8 points
- Either aided or unaided, can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres – 10 points
- Stand and then move more than one metre but no more than 20 metres – 12 points
- Cannot stand or more at all or more than one metre – 12 points
The 12 activities outlined above may or may not be a complete list when considering the everyday tasks but I guess you’ve got to start somewhere. The question is how they are translated into the well questions on the form and the rubric governing the assessment. Let’s explore the short-list in a little more details by, as exposing as this could be, applying them to the Spinster’s individual circumstances. It is SO much easier to dehumanize the subject, it allows a distance to be created between the assessor and the assessed. These people, or rather those people with impairment, needing assistance are the justifiable recipients; not everyone will fit into the category as we must remember that the DLA budget has grown exponentially since it was introduced.
Interestingly assuming that each activity is separated by a comma then there appear to be 13 rather than 12 activities but that’s a pedantic point as the rogue one appears to be ‘symbols and words’ which without the ‘reading and understanding signs’ wouldn’t make a great deal of sense. Virginia Woolf would have employed the semi-colon rather than the comma on account, on presumes, of this being a list. As grammar is not my strong point I should have drawn a veil over this one; good job communicating in writing isn’t included! And there you have it surely that is an omission as filling the blessed form and ‘telling your story’ is going to require enough writing to give the average person RSI! So brace yerself as we take a trip through the 12 activities noting that no 11 is ‘planning and following journeys’ I feel obliged to inform you that the only guide employed here is the one called My Monday i.e. today. As I prepared by numbering the activities I realised that no I stand corrected there are 12! So what exactly does activity No 8 ‘Symbols and Words’ mean? Hmm it’s not looking good Esther..
No 1: Preparing food, taking nutrition, – to you and I let’s assume this refers to cooking and eating; no mention of shopping which believe me is a challenge for those of us included in this category. In terms of preparation this is a high risk activity for the Spinster, why so you ask? It involves knives and hot things; cutting and burning are a frequent occurrence in this kitchen to the extent one keeps plasters in the drawer. Consider the packaging that so much food comes in these days and the conclusion of a martian would be that the contents are designed to be preserved ad infinitum rather than freed from the constraints!
Not only this lunch time I managed to cut myself attempting to open a freeze dried/suction assisted pack of Smoked Mackerel fillets (finally I’ve found some that say boneless so I don’t have to take care when consuming – with these fragile teeth this is a further hazard and that’s before considering the choking risk as swallowing is of late not to be included in multitasking activities! Don’t pretend some of you don’t attempt to talk/drink during a meal before emptying the contents of your mouth!). Before getting the scissors out of the drawer I had managed to cut myself on the sharp packaging; blood was drawn (thankfully stemmed before an unintended marinade was introduced).
I could go on at some length about the challenges of food preparation especially transferring the contents of pans to plates; extracting hot containers from the microwave etc etc and what about if I wanted to make a cake for my Godson’s birthday? That involves co-ordination especially if I wanted to write ‘Happy Birthday’ in icing; dusting fairy cakes with icing sugar is however my speciality on account of my inbuilt shake mechanism.
On co-ordination I was making fruit salad at the weekend – without the addition of ‘blood’ oranges – and the main issue on this occasion wasn’t knives. No it was my poor spacial awareness as I knocked the thankfully half full bowl of pineapple off the counter managing to catch it as it reached my knees! Of course the bowl was upside down at this point but as I was wearing an apron I chose to stop it assuming it wouldn’t make too much of a mess requiring laundry (where is this activity included I wonder). But no the juice actually soaked through the apron and me trousers! Putting on one side the stickiness I may suggest to the Original Source people adding pineapple to a shower gel as its quite a pleasant smell on the skin – ok the knee may not be the best bit of the body to sample this unless one is still fortunate enough to involve (albeit occasionally) a third party (on request) in bathing (not to be confused with activity no 3).
Taking nutrition: is this where planning shopping is included i.e. making sure that the taking of nutrition meets the five a day or whatever the latest nanny state is advising the population to eat/not eat? Or is a takeaway fair game here in which case the negotiating packaging activity comes into its own – can you imagine me eating a pizza out of the box I think not! Now this is where eating is a form of performance art especially if you have poor balance – include this one in food preparation as bending down to get something out of the oven is a real risky business as the going down and the coming back up (as it were) is frankly hilarious (imagine Tom and Jerry) as dropping is practically guaranteed!
Assuming you’ve got the food onto the plate and in my case managed to successfully got said plate to where one is planning to consume the contents (not easy with a crutch in one hand). By this point I confess my appetite has almost disappeared as it’s such a time consuming palaver! Well use your imagination to think about the eating process with an inbuilt shake mechanism that reaches it’s zenith in the evening; yes napkins do have their use and no I have not resorted to eating in an apron!
Never mind about the other 11 activities I’m already exhausted necessitating a pause. And yes this would lead to writing shorter posts but then that would be too easy and the Spinster is always up for a challenge no matter how counter intuitive that might be; or simply foolish perhaps!
No 2: Managing therapy or monitoring a health condition: ha ha ha the Multidisciplinary Team involved in my life number’s circa 8+ so the appointments themselves require at least an A level to manage them. Canny behaviour being necessitated when a new enthusiastic element is introduced ‘helpfully’ into the mix; frankly ‘support’ can be overwhelming at times. If only I was consulted more routinely (in advance) problems on both sides could be avoided.
Is complementary therapy included? But one suspects the key word here is managing; who decides what is and isn’t included. I have regular shiatsu for example on account of my ‘gait’ (the dressage rocking horse way of walking) and what about the personal care shaping of eyebrows and the odd facial all of which make the Spinster feel a little more human (oops that’s probably not an acceptable yardstick) i.e. more able to face the world.
What about prescription drugs? Managing 10+ items is an art in itself as there are almost as many ramifications in terms of the number taken each day. Poor manual dexterity means removing pills from the packaging (a recurring theme) is a bit of a bugger. Rather than getting a tray full of boxes out every time – OK only three times a day – I lay them out in a pill box with little compartments. Doing this every other week or so takes 2-3 hours and that’s before one adds in the ad hoc medications on top of the regular ones!
No 3: Washing and bathing: assuming this refers to one’s body rather than the laundry the Spinster is relieved to say that thus far no one else is needed here. When I say needed I refer to a physical rather than an emotional need which is quite another thing!
But with poor balance and coordination it is a lengthy process; tediously lengthy process but necessarily so if appearances are to be maintained. This is where one can shoot oneself in the foot as one was always advised to approach the (DLA form) task as if you were describing your worst day. The closest analogy I can give for an ordinary person is having a really really bad hangover with at least one limb in plaster.Self respect tends to push one into playing thing’s down and pretending this are better than in truth they are.
This activity involves the need for good coordination and balance to avoid examining (without intending to) the floor! Think about drying yourself with a towel assuming one hasn’t slipped getting in/out of the bath/shower which is an occupational hazard of activity 3.
And there of course there is shaving for both men and women; hair removal with the involvement of razors is of course more dangerous than hair removal creams obviously only an option for the ladies. Yes I am momentarily deafened by the shout of electrical appliances but believe me those not without their hazards!
No 4: Managing toilet needs or incontinence: frankly the answer to this one is ‘mind yer own business’ (as opposed to asking about mine)! But of course one doesn’t have that option but forgive me if I don’t give chapter on verse for the Spinster. I would say one thing I remember from the old DLA form; something that one’s middle years mean is no longer an issue. There was a question about how you managed your periods – a definite check in your dignity question. You know I wish I’d had the presence of mind to describe using a Moon Cup and waited for clarification to be requested!
Talking to my friend who has a disabled son who is paralysed from just under his arms I am in awe of how she manages the ‘stuff’ needed to manage his activity 4. At least she can respond instead of her son which is marginally easier albeit no less undignified. The quantity of pads and catheters both of various sized necessitate a large amount of cupboard space and challenge the recycling obsessed citizen; basically you have to accept over your lifetime you will personally contribute significantly to stuff that goes to landfill. One elderly neighbour up the road has bright yellow bins that her carers put her ‘stuff’ in; you couldn’t do much else to advertise that a vulnerable valueless person lives here – why are the bins bright yellow? Presumable so the drivers collecting them can see them so the Council’s convenience trumps my neighbour’s dignity; not good enough in my book!
No 5: Dressing and undressing: does this include deciding what to wear in which case the Spinster is up the swanny as this is especially time consuming and add considerable time to the activity! Seriously this is an issue as it’s all part of self respect and choice neither of which seem to feature in this generic exercise. Not to mention needing to choose clothing that is comfortable; no I’m not referring to velour leisure wear here rather the conflicting demands of regulating temperature (what Alice would refer to as not too hot and not too cold) and not inflicting pain ( hyper sensitivity means close fitting items BLOODY HURT).
This activity is a challenge daily (actually twice a day) for the Spinster as it does require coordination, balance, manual dexterity and a degree of strength all of which are in short supply in this household. Again conjure up cartoon character in amusing poses and you won’t be far off the challenge. It takes some adjustment to perform these tasks sitting down and that’s not always the answer as slipping off the piece of furniture is always a hazard as it burning ones nether regions on a hot radiator in the process!
Finally all I’ll say is buttons, zips and fastening of every variety including accessories of course – back to dignity and personal choice before you shake your head disapprovingly! Think about what you’d dress without? Elastication is NOT an answer in every case!
No 6: Communicating verbally: not an issue for the Spinster but a real issue for others not always resolved by someone else doing it for you. No matter how difficult or time consuming this may be someone for example recovering from a stroke,or indeed in some people with MS, each individual has the right to choose how they communicate.
No 7: Reading and understanding signs: see answer to activity no 6. The right amount of light is needed especially towards the end of the day of course.
No 8: Symbols and words: no idea what this might refer to unless associated with activity no 7!
No 9: Engaging with people face-to-face: Again as long as the Spinster is enabled to prepare herself for the outside world – see activity no 5 – this is not a problem. There may of course be a connection with activity no 2 depending on how one is spoken to i.e. respecting difference like the fact the person may look or behave ‘differently’. It has been the Spinster personal experience that she has been treated as an individual with a smaller number of brain cells than the average amoeba – yes I don’t think amoeba’s have a brain either!
No 10: Making budgeting decisions: ironically disabled people are amongst some of the poorest in society so in many cases will be rather good at managing on relatively little. With the recently introduced changes to housing and council tax benefits will only make this more of a challenge. A disabled couple, both wheelchair users, I heard about will be hit by the bedroom tax as of course all married couples share a bedroom don’t they? Their individual circumstances, on which the 2 bedroom property was allocated to them, necessitate 2 bedrooms.
Other people will have difficulties making budgeting decisions as of course it’s about value as well as simply the cost. Shopping for food being a classic example as well as utilities of course; how many people realise quite how expensive a token meter, cited as a budgeting tool, is when paying for gas/electricity?
No 11: Planning and following journeys: now we all get lost sometimes and yes in some cases a SatNav could be the answer if you can cope with the annoying voice which would simply make me want to defy the instruction just to see what happens!
Public transport is a challenge for many disabled people as it simply isn’t a viable or accessible option and that’s before you work out the timetable. Talking to one of the ladies I swim with this morning about her forthcoming cataract operation she told us about using Patient Transport to get to the hospital. It’s easier on the one hand but to get to the hospital for a midday appointment she has to be ready for 815 am meaning she will be hanging around for the best part of 3 hours. She is very accepting but how many of you would be? She is 84 years old and no longer drives hence cataract needed; she no longer has a choice other than to accept what is on offer.
Oh did I mention the cost of petrol/diesel a real factor influencing the planning of journeys. Plus have you tried to fill up with fuel when not all your limbs function and yes coordination/balance is needed to avoid people assuming you are inebriated!
No 12: Moving around: does this refer to the house or outside I wonder or perhaps both? The Spinster now uses 2 crutches outside and at least 1 all this time in the house – the experience of finding myself stranded wobbly like a weeble when forgetting to use a crutch is a frequent occurrence these days! Sometimes you have to attempt tasks without them but its increasingly more difficult and messy!
Outside I need the car as public transport just isn’t accessible – you try to get on a bus or a train with 2 crutches – and the frequency of the timetable is seldom convenient. I am impatient unlike the lady I swim with. Ironically one of the most difficult places to move around is the Hospital as the distances are huge and corridors full of impatient medical staff perpetually in a hurry! If someone knocks into me I am liable to fall over and no please don’t ask me to demonstrate as I have moved beyond being the helpful patient here!
Trolleys help to a degree in supermarkets as long as not too much reaching is required – either up/down or away from the trolley.
Basically the world could become a terrifying place; certainly it is very difficult to the extent that some people do lose their confidence. There is little more sobering than an elderly lady offering you their trolley as happened to me the other day.
How many of you can visualise the distances given above? And yes it varies from hour to hour in my case hence sitting down at 8pm with one crutch only to realise by 10 pm I can’t easily manage without 2.
In conclusion: OK this was a slightly tongue in cheek romp through the 12 activities but even where I attempt to be amusing there is usually a grain of trust underlying the point. Can the new system cater for the range of individual need? Personally I remain to be convinced especially if the underlying driving force is even in part financial; assessments paid by results won’t help in the round. If disabled people are left having to take unacceptable risks because the support they need doesn’t score enough points to access it then at some point we will trigger the support because of injury.
Personal choice allowing disabled people to lead the life they would choose to, enabled by a State system of support that many of us either currently do or have in the past contributed to as taxpayers, is surely the sign of a democratic society? Again I would ask you to pause and think about the way you lead your life, the quirky things that are intrinsically part of you and consider what you would do if you were suddenly unable to lead your life as you currently do? Is absolute universality a workable approach where support for a diverse disabled population is concerned?
And where is the activity covering laundry? Or changing the bed for example as I had to do this week when Friday Fairy hurt her back and couldn’t come. Well let’s just say it took the best part of a morning to strip the bed and make it again; consequently the rest of the day was pretty much a right off and that was before I did the laundry!
Now there’s a day I’ll never see again but sometimes those of us who can speak out should speak out not matter what the personal cost. Sometimes you just have to put yourself out – now I’m off to buy disposable razors as my ‘friend’ pointed out frankly less than acceptable personal, shall we say ‘grooming’, standards – see people do notice even if we don’t shower with many of them! Have you ever tried showering without lifting your arms ladies? Ha how many of you suddenly felt moved to check your personal ‘situation’ just then…