Sunday, 8 January 2012

What's Wrong with Personal Independence Payments?

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be a basic primer for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20%  in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

 The most significant changes are:
  •  Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.
  • The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc). Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.
DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance.  Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment.  If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes.  Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to  

1. A major increase in unemployment among disabled people. 

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll.  Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.

2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to
  •  Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly. 
  • Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled. 
People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.

3. A major increase in the social segregation of disabled people. 

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people.  It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.


  1. I've had several people point out across different fora over the last few weeks that in May I was referring to the first draft of the PIP proposals, and that a second draft was published in November.

    Another fact people keep pointing out is that in the second draft, manual wheelchair users get awarded 12 points towards the mobility component.

    Their pointing out this doesn't change a damn thing.

    Manual wheelchair users may get 12 points, but they haven't qualified how many points you need to get the benefit! Given the stated aims to take the mobility component from manual wheelchair users it would be ridiculous to assume that anything less than 15 points will get you HRM.

    Secondly, these are still only draft criteria. They are refusing to commit to criteria until the WRB has gone through. Which is dodgy in the extreme.

  2. We need the European Court of Human Rights to stop this. Is this maybe why so many on Cameron's side of the fence want to dispose of it, and write up our own UK version which no doubt will have many provisions in it to remove entitlements to state benefits as being a human right? We MUST keep the Human Rights Act, if only for the good it can do. The bad never outweighs the good.

  3. Lisa is utterly correct. I tried to impress on the National Autistic Society that so-called 'concessions' to criteria changes were meaningless and they should not accept DWP and government assurances that they were actual concessions because we didn't have the full scoring system laid out in front of us first. We had no measure of what any change meant because there was no way of knowing if they would simply tamper with the scores secretly to nullify the changes.

    Even now we have the scores for the individual descriptors, it's meaningless without knowing where the goal is. The government have been completely underhand about this from the start.

    I might make this a blog-post.

    1. Yes! please do, I would support this.

  4. Lisa, when I wrote this I looked at the two drafts criteria, I could only see a little difference in phrasing - when I saw your comment I had to check which one I'd linked to, I couldn't remember.

    Here's the second draft criteria [pdf] just in case that's useful.

  5. Cannot move up to 50 metres without using a wheelchair propelled by the individual. 12 points

    Cannot move up to 50 metres without using a wheelchair propelled by another person or a motorised device. 15 points

    WHY THE DIFFERENCE? If wheelchair users are still going to get HRM, then why differentiate between the 2? I find this highly suspicious and dangerous. Using a wheelchair of any description should not be taken into consideration full stop.

    Furthermore, people requiring a wheelchair after moving 50 metres get even less points:
    "For example: identifies individuals who can use an aid or appliance to move up to 50 metres but then require a wheelchair for anything further." 10 points.

    In other words it seems extremely likely that some wheelchair users ARE going to lose HRM.

  6. If they are going to cheese pare these benefits because they need to save cash,then how can they find 70 billion to build a fast rail link North something that we could do without untill better times,its the same old story the politicians and bankers got us in this mess and the poor people have to suffer. The rich in this country own everything our gas water electricity transport,they have bought up all first time buyers potential homes and rent them to their less fortunate fellow men at exhobitant rents
    I hope I live long enough to see a change.
    Ronald Blay

    1. They can afford to build the rail link because it's a project that will create employment for the duration of the project - ie from halfway through this government's term, for a couple of years until the next election.
      So come election time, they can point to the figures to show how they "turned around" unemployment... even though once the rail link is built all those workers will be jobless again.
      Sorry to be so cynical.

  7. i spent tonight reading the 2nd draft and the examples they use seem fair

  8. just read UKIP's blog about D/C* giving 10Billion! to IMF* clever boy D/C!
    wile your about it*
    look up Article19* of HRC!
    you sign it*

  9. my friend's,
    your onto the wrong track!
    kook up Article19* of ERHC*
    and fight for rights*
    UK* signed up,
    to this!
    it's legally binding!

  10. This article is out of date. see:

    The proposed points thresholds are:
    The proposed entitlement thresholds for the rates and components of the PIP are:

    Daily Living component (from activities 1-9)
    Standard rate: 8 points
    Enhanced rate: 12 points

    Mobility component (from activities 10-11)
    Standard rate: 8 points
    Enhanced rate: 12 points

    The choice of which descriptor applies will be based on consideration of a 12 month period. If you cannot carry out the descriptor for an activity for more than 6 months, aggregated over the 12 month period, you will be awarded the appropriate points.

    If you have a fluctuating condition the most appropriate descriptor will be considered to be the one which is likely to apply for the greatest proportion of that time.

    1. That's the thing about time: Stuff tends to change as it passes.

      Do you propose re-writing everything on the internet because some stuff has changed since it was originally written?

      I'm sure there are blogs from August 2001 detailing what a great place the World Trade Center is to visit...

    2. very well said lisa, but hey thank you for all you done.

  11. after a brain-heamorrhage* in 1990*
    I started looking at Human-right's angle!
    covers Independent-living!
    and UK* ratified it*
    SO8 come-on! kick-ass!

  12. and what about us mental people? what chance do we have with this new system? im not being funny guys all you above stand a fighting chance but we will be destroyed.

    I may not need a wheelchair BUT with social anxiety i may as well not have legs, with a OCD i may as-well not have hands, with dylicixa i struggle to understand cooking gulid lines and offen for get i have somthing cooking also i keep looking the wrong way when crossing the road.

    i will no doult loss my private home in april 2013 one that i waited till i was 25 for.

    i lost my job at 20 becouse i made to many mistakes and some times was terrified to face customers. they throw me into a council estate with anti social behaver, stong alcohol and drugs abuse , sleep during the day and party drueing the night, oh and i was bullyed by eveyone coz i was not like them. i was deprived of sleep and had strong migrains from the thumping tv at 1 am.

    on top on how ill i was already it was a fight to keep a knife from my throut as nobody want to hear or help me. but 5 years of that past and i turen 25 in octtober 2010 i then heard i can now move out into the private sector and be amost the peace of working peaple. in april 2011 i found my lovley studio, in october 2011 i heard they will be rising the entitlement from 25 to 35!, in febuary 2012 i got middle DLA and had my housing benifit saved , in july 2012 i heard they will be scrapping DLA the only thing saving my home......

    i am losing waight and vomit almost eveymornig
    i have been like this since 1998 coz of verybody at school punching and spitting on me and the girls crushing mu self estem to nothing.


  13. 23/10/2012
    Hi Everyone, i am 41 type one diabetes 37 years, have stage 5 kidney failure, awaiting dialysis and transplant kidney and pancrease, i am also blind person lost sight due to diabetes, at present i am on DLA middle rate care higher rate mobility, i do not follow politics until now regarding this issue with DLA AND PIP. this is so scary, before i became disabled i ran my own business but this is so scary knowing that i could lose everything but i am also worried for thousands of vunerable disabled people, we already been through all this assesment for DLA and we have all the medical evidence and each and everyday is a struggle just to live our lives now the goverment DWP are making us feel that we dont belong in society in this country. Sorry but have no confidence in the Tories its the bankers and mps that did this, why not take the money from the rich and famous oh no they will not do that coz they will leave britain and the goverment cant have that, well i say go ahead go then just maybe vunerable disabled peoplee like us can live our life in better ways.Tories out. I am not a politcical person but my grand child could run the country better.Once again we are getting punished for the rich getting this country in this mess.HUMAN RIGHTS Have been and will be vialated.

  14. I feel so sick with worry over this. I got cancer back in 2000 and suffered a lot of damage from chemo. I tried to work for 4 years after but work eventually 'retired' me. Because I delayed claiming benefits I lost out because they'd brought in the rule that effectively more than halves the amount of incapacity I get because of a small pension. I now have to wait until I'm nearly 64 before I get the state pension and now this. All my DLA goes on a car. If they take that it affects not only me but my 77 year old mum with mobility problems herself. I have to attend so many GP, clinic and hospital appointments - how do I do that without a car? How do I shop? The one pleasure I have is taking my dogs to an area they can run around. Do they really want to take that away from me? I paid into the system all my life until I got sick. I do everything I can myself for me, my mum and my son who is also ill. I can't take much more pressure. I know there are others who are worse than me. What gives the politicians the right to keep torturing the weakest and most vulnerable in this society? What gives them the right to call us scroungers/skivers? How many sick people will have to commit suicide before they are stopped?

  15. I'm also worried about these changes too. I have Asperger's syndrome, am dyspraxic and only have the sight in one eye, as well as having problems with sensory overload, which practically makes crossing roads an inpossiblity without the assisrtance of another person. I also hold down a job with the supporft of a charity, as I'm a primw target for scapegoating and bullying, as I'm different from the majority of people.

  16. My brother has recently been assessed. Had a quadruple bypass rapidly followed by a stroke. He has lost the use of his left side and needs a crutch just to move. His memory is shot and he can't do most of the basic things like lift a kettle to fill a cup etc. He was deemed fit for work, and actually scored 0 in the assessment even though the assessor had to help him when his crutch fell onto the floor. The judgement was sent through to him rapidly followed by a letter telling him he has to repay the mobility part of DLA he had been receiving

  17. What do the scores mean? I have gone through each section as I have a son aged 37 who has cerebral palsy, learning and sight difficulties, a lack of spacial awareness and epilepsy. He is in supported living but needs 24/7 supervision as to not do so would be a safeguarding concern. I have a total score but nothing anywhere as to whether or not this score is helpful or other wise. At the moment he gets higher rate for both on DLA

    1. Can anyone tell me if the amount of money displayed for PIP (Enhanced Rate at £79.15 and Standard Rate at £53.00 for Daily living and Enhanced Rate at £55.25 and Standard Rate at £21.00 for mobiliy) are per month or per week ??? Thank you !