Wednesday, 18 May 2011


Last week Maria Miller - the minister for disabled people - said we needed welfare reform because "Well it can't be right that we have a benefits system where, under DLA, more people who are either alcoholics or drug addicts are in receipt of the higher rate of disability allowance than people who are blind."

The reason that more addicts will be getting High Rate Care (HRC) than blind people is because to get the higher rate care you have to need assistance 24 hours a day. Alcoholics will often need support during the night in case they end up so drunk they pass out and vomit. If someone passes out on their back and vomits they will aspirate their vomit and die so someone needs to be present to roll them into the recovery position if needed. Whereas blind people - unless they have additional medical complications - will typically sleep through the night. If they do have additional medical complications then they'll be the reason why they get HRC rather than the blindness. So that's why we have a system where more addicts get HRC than blind people.

The claim that Miller was trying to make in a roundabout way without actually saying so was that the welfare reforms are only going be targeting people with socially unacceptable impairments, by which I mean conditions that tabloid readers don't like, like alcoholism. She was trying claim, indirectly, that people with socially acceptable conditions will fare OK under welfare reform, that they'll protect the "most vulnerable."

I have osteogenesis imperfecta (OI). I've broken about 50 bones. OI is presumably one of the conditions Miller thinks the public finds socially acceptable so I would be one of the people that Miller was alluding to when she said that the most vulnerable would be protected. I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component.

I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street (and it's a short street) before my knees had swollen up so much that I couldn't bend them for the rest of the day. My consultant orthopod has told me to walk less than the little bit I already do around the house because I'm causing permanent damage to my joints. I'm wearing them out and I'm only 32.

I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking1, sleeping2 and eating3. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.

You'd think I'd be one of the people the government would consider "vulnerable," right?


Flicking through the draft criteria for DLA's replacement, the Personal Independence Payment (PIP), it looks like in future I won't be getting a penny.

The mobility component will no longer be assessed on your ability to "walk", it will be assessed on your ability to "mobilise". The difference being that they'll consider your ability to get around using a wheelchair. And if you can get around using a wheelchair your benefit will be denied.

If you could use a wheelchair if only you owned one you'll be assessed using an "imaginary wheelchair". And if you can use said imaginary wheelchair you will be denied the benefit that would allow you to buy an actual wheelchair made of proper materials and not just Miller's fanciful thoughts.

Then there's the "Daily Living" component which will be assessed on the following criteria:

  1. Planning and buying food and drink;
  2. Preparing and cooking food;
  3. Taking nutrition;
  4. Managing medication and monitoring health conditions;
  5. Managing prescribed therapies other than medication;
  6. Washing, bathing and grooming;
  7. Managing toilet needs or incontinence;
  8. Dressing and undressing; and
  9. Communicating with others.

Notice how "needs supervision for safety reasons" has gone? Presumably so those addicts will lose the entitlement to supervision so they drown in their own vomit. But it'll also not only affect people like me who injure easily for physical reasons, it'll no doubt affect a huge number of people who currently get DLA due to mental health problems or conditions like epilepsy.

In short: I'm fucked. DLA is the benefit to cover some of the extra costs of disability. It doesn't cover many of those costs anyway and it looks like in 2013 I'm set to lose that little bit of money that allows me some semblance of independence and life.

Miller claims the system needs reforming because it's not helping the right people. I'm loathe to define myself as "needy" or "vulnerable" but thanks to these reforms I will become both. And please remember this post the next time you hear someone from the government claim that welfare reform is about "weeding out the scroungers" while "protecting the most vulnerable."

Edited to add: Over at The Broken of Britain there's a post detailing how to make your objections to the new PIP assessment criteria known. You can also write to your MP making your objections known.

1 December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
2 In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
3 As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).


  1. Wonderfully written post, and a massive thank you for pointing me towards this criteria. If you wouldn't get PIP under that criteria, then I'm PIPed...

    Would you mind if I copied your blog post onto mine? I now want to write a post expressing how I feel about this, but I want to use yours as the main body of that post, as I couldn't hope to better that. I promise to give you a MASSIVE hat tip :-) I've been reading your blog for a while anyway, and it's played a significant part in insipiring me to start my own x

  2. Sorry for swearing in advance, but it's just fucking scandalous!

  3. I have plenty of problems of problems with the PIP criteria (and I have sent a list to the bill committee, and will be sending it to the DWP as well), but the draft criteria make it clear that they will only consider adaptations that you actually have already - no 'imaginary wheelchair'. I guess they realised all the problems with PR that came from the ESA stuff about it.

    It is true that the draft treats people who can mobile with only manual aids equivalently to people who can mobilise unaided, which I think is wrong. There's only two activities for mobility, one for planning and following a journey and one for actually moving around; distress is only covered if it's "overwhelming".

    It's hideously wrong, but there's still, theoretically, time to change it. Let's all actually contact them letting them know what the problems are. Give coherent arguments about why people in wheelchairs should be considered to have problems - I'd start with it justifying lower rate on its own because there are still huge problems getting around by wheelchair, and if they thing there aren't they need to actually take a look at town centres and buses outside of London and other major metropolitan areas.

    My problem is that my biggest care need just wouldn't be considered at all any more. Never mind that 'waking up and getting out of bed' is pretty essential to engagement with both employment and anything else in life...

  4. @Spasticus Autisticus:

    Would you mind if I copied your blog post onto mine? I now want to write a post expressing how I feel about this, but I want to use yours as the main body of that post, as I couldn't hope to better that. I promise to give you a MASSIVE hat tip :-)

    Our policy around reposting is basically standard: You can quote fair sized chunks as long as you state your source. So if it wouldn't get you in trouble for plagiarism in an academic essay then it's fine.

  5. That was my intention. Thank you :-)

  6. Oh, and don't forget that the loss of wheelchair use as a criterion also means that will cease to be a qualifier for Blue Badge or public transport concessions - won't the blue badge logo be ironic!

  7. The Nazis deemed disabled people as "Life unworthy of life". The Nazis arrived at the "Final Solution" gradually and incrementally. I am worried about the direction the government's policies in relation to disabled people are heading. Are these cuts the first wave of an assault on disabled people which will end in compulsory "euthanasia"? Or am I being paranoid?

  8. Out of ten consultants-two O.T's,physio,nurse,health visitor, G.P,psychiatrist,Government stooge, social worker and one from RADAR.Clearly chosen for desired outcome,apart from maybe one person none have any idea about the practicalities of having a disability/illness and participating in Society,or if they do this is not evidenced in the draft criteria.

  9. I know exactly what you mean. I am also f&^&ked as you put it so rightly - They have made sure that the majority of disabled people are - in a word - F*^%ked

  10. I dont want to detract from what I perceive to be a harsh new benefit with an equally harsh criterion however I am not so sure about this wheelchair business.

    I dont have the same condition as you but I do have some of the same issues and I can tell you that like me you will probably be rated unfit to use a manual chair. The OT that assessed me explained its the same effort as running but on the arms. I also cannot use an electric chair for the same reasons I cannot drive and as I am alone I cannot cope with such a large machine anyway.

    So whilst we all need to be on our guard I urge all to consider reframing your needs to match the criterion rather than despair. I am old enough to remember having to do this with DLA too - quite a feat when your autistic but I got support from a charity and its been OK.

    I am scared about PIP but I am prepared and determined to fight for my support.

  11. @Anon (the most recent one);

    There's no way I'd be rated unfit to use a manual chair. None at all.

  12. Equally the idea that a manual chair magically removes all access difficulties is false. Just take a trip down your nearest High Street, how many stepped entrances are there without ramp alternatives? It's at least 50% for me, including many of the buildings I need to access. Then you need a disabled bay to allow you to get into town and access the chair from the car. Which means a Blue Badge, when entitlement is no longer clear. Public transport might be an option for some, if you can get to the nearest bus-stop (350m for me, uphill), and if the wheelchair space isn't occupied by a petulant mother with a buggy the size of a small skip, or another disabled person forced into reliance on a chair, and if you can physically tolerate the stop-start ride.

    Access to many workplaces is similarly problematical. At my old employers I seriously looked into using a manual chair because of the distance I was having to cover between office and labs several times a day, but decided against it because of the problems I would have faced with 1) management attitudes, 2) access -- the engineering offices were upstairs and there was no lift, and there was more of the same all over the site, 3) career limitations resulting from limited access, there were posts they could shunt me into where access wasn't an issue, but career progression was, 4) it is over 500m to the nearest bus stop. Many employers will be as bad, or worse.

    Switching to assumptions about mobilising rather than walking sounds fine if you don't have to live with the realities of the restricted access from a chair in our contemporary environment. It's a sound-bite for the normies who believe DDA made everything magically accessible, not for the people who actually understand the issues.

  13. "Well it can't be right that we have a benefits system where, under DLA, more people who are either alcoholics or drug addicts are in receipt of the higher rate of disability allowance than people who are blind."

    Let's face it, this is incredibly duplicitous when the government has historically said that SVIs do not qualify for HRM. But even discounting that and assuming for the sake of argument that the situation is what she believes it to be, which part of 'to each according to their needs' does she find so difficult to understand?

  14. @ Lisa - sorry I wasnt being as clear as I could before when I was talking about being assessed regarding a manual chair. This was not an ATOS or DWP decision!

    My GP refereed me to the local wheelchair service which was part of the NHS. There an OT who assessed me verbally and then watched me try to use a chair. As my condition can cause totally normal movement and actions to cause me great pain and as fatigue is such an element to my issues I was refused the chair on health and safety grounds and was told my only option was an electric chair. As I managed to get there on two sticks I was not eligible for a NHS one and was given leaflets for the motability scheme.

    So when I was ordered to be reassessed for DLA just before xmas I was initially very worried as it had very PIP like new questions on it asking about adaptations and aids and if they mean I can do the things I say I cannot. I sent off all the paperwork regarding the assessments for the wheelchairs and I got my HRM without medical or appeal.

    I cannot say if this will be enough for PIP but being able to present enough NON BIASED and MEDICAL opinion about my mobility has always served me well.

    Good luck!

  15. @ DavidG access is a valid point - I did try a mobility hire scheme in my city - great on paper and the chairs were actually easier to control than I thought and they even had a little practice course for you to get your confidence up with.

    However once out of their doors you cannot go anywhere and once in a shop cannot shop and there is no way I could work using even an expensive tiny electric chair as in the third sector and the NHS access is a joke.

    I think you are correct to say that there is a huge perception gap between people who use an aid and the general public. I constantly get told off for being a fraud due to how I use my sticks - I have to then explain the difference between a crutch and a walking aid. It actually isnt all that obvious.

    I also dont think its the publics fault or that I am not a member of the ignorant populace! I had absolutely no idea that using a wheelchair would be so hard - I resisted any idea of a chair for ages as I was actually concerned it would rob me of the little exercise I get from shuffling about!

  16. Just wanted to say great post. My bro will be screwed too since he can now manage his schizophrenia with meds and live independently. Thanks to losing DLA he will lose his home (he lives in a housing project with DLA as a criterion), he can't work and the stress is likely to put him back in crisis after its taken 12 years to get to this point.

  17. Could I please interest you in joining in with us re this link.

    Thanks Magda x

  18. someone should make them totally understand your comment
    Equally the idea that a manual chair magically removes all access difficulties is false. Just take a trip down your nearest High Street, how many stepped entrances are there without ramp alternatives? It's at least 50% for me, including many of the buildings I need to access.

    because I KNOW a whole heap of the shops I would want to go in - even my dentist - do NOT have flat floor access!!! so in all effects - you are outside the door!

  19. >> even my dentist <<

    My dentist is beyond a joke. Nearest disabled parking is over 400m away on the other side of the bypass, at the bottom of an unmanageably steep hill. If you somehow make it to their threshold there are three high steps to the door, then the treatment rooms are up two or even three flights of extremely steep stairs. And this was newly, and purposely, built in the late '90s....