Campaign For Fair Disability Assessment

I am getting a real bee in my bonnet (or bug up my butt as our American chums would say) about the complete unfairness of the current disability assessment process and it doesn’t help that the media in general has been carefully orchestrating the notion that all people on “benefits” are scroungers and cheats – the only programme I have ever seen on TV that sort-of showed the counterpoint was Dominic Littlewood’s “Saints and Scroungers”, but as I recall, even this show spent more time on the scroungers than on those not receiving benefits they are entitled to and the disabled didn’t feature as a separate category at all

While I was working, and I worked part-time while at school/university and then full-time until my parkinson’s rocked on up, I have to confess that I didn’t pay any attention to the benefits system.  At the time I earned reasonable money, could afford new clothes, didn’t need to stop and think about the cost of eating out or going to the cinema. Lucky me!

As a fit and active able-bodied individual I paid taxes on my earnings and if I came across a headline of “Benefits cheats” the most I might have done would be briefly mutter under my breath about shirkers.  Nothing more.  Benefits and specifically the system of disability benefits didn’t affect me and my life one iota.

I don’t believe I was alone in thinking this way.   We pay taxes, we work hard, the system is there to support us if/as/when we need it to.

If someone had asked me to describe how I thought the disability benefits system would work for me, if I needed them, I would probably have said that I would expect to be able to readily find out what benefits in total I am entitled to, what the eligibility criteria were for the individual benefits, what specific supporting evidence(s) would be needed, and any individual assessment I would be subjected to would be appropriate for whatever condition affected me and be conducted by medical professionals.

That’s all quite reasonable and fair, isn’t it?

But that is not what happens.  I am not going get sidetracked into what disability benefits are available or even what other benefits a disabled person may be entitled to.  My focus is on the fairness or otherwise of the way in which disabled individuals are being assessed for benefits administered by the Department of Work and Pensions.

Here is the current assessment that is being applied to everyone seeking the ESA (Employment Support Allowance – successor to Incapacity Benefit and Income Support and Severe Disablement Allowance).  As you can see there is no filter applied if the individual being assessed is missing a limb, but otherwise healthy, being treated for cancer or living with a chronic, progressive and currently incurable condition. The tests that we are all being subjected to are the same and the outcomes are random.

The Assessors come from a wide range of health professional backgrounds.  If you have a condition such as Parkinson’s Disease, you won’t necessarily see someone with any knowledge whatsoever of your condition.  You see whoever happens to be working that day.  You may see a midwife!!  They may be/have been a very competent midwife but if, for example,  at one point in the test you successfully pick up a weight (which then completely exhausts your muscles so you are now in pain and unable to repeat the action) they will check the box on the computer-screen in front of them that says you lifted that weight.  There is no place for “with difficulty” “won’t be able to do it again”.  The box is checked and the process rolls on.

What is fair about this?  Pretty much nothing.  Its not fair to the assessor who is merely the User Interface between the IT process and the claimant and its certainly not fair to the individual who, through no choice of their own, is seeking financial help to cope with disability.  Not a handout, but for someone who has worked for decades, assistance to which they are rightfully entitled!  That our conditions are wildly differing and our answers don’t fit properly within the form really doesn’t matter.

The company chosen to make those of us with disability all fit into the system is a multi-national IT company – not one with any expertise in healthcare or disability of any kind.  For doing this job, ATOS is rewarded with £80m a yr contract for 7yrs.

Just this morning on behalf of the Government, Iain Duncan-Smith has announced that he wants to see 500,000 people cut from the list of those receiving disability benefits,

What an ugly numerical coincidence…. one person cut for every £1 paid to ATOS!

We need to campaign against unfair disability assessments – it is not right or fair for those with chronic, progressive and currently incurable conditions e.g., parkinson’s disease to be tested in a one-size-fits-all system. It is also not right that those whose disability isn’t evident, like the profoundly deaf, should be classed as not disabled when they need costly enhancements to help them function well in society.

Forget Big Society how about a Fair Society!!


Parkinson’s UK – Disability Benefits Campaign

The Hardest Hit


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Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

8 thoughts on “Campaign For Fair Disability Assessment”

  1. Joanne, this is really well written and I hope it will receive the recognition it deserves. My husband has worked with people who have disabilities for many years, so I know a little bit about what they face in the US. Things may be even more difficult in the UK!

    Not sure, but is this a typo? worked parti-time

    Good thoughts coming your way!

    1. I used to say that I wished there was some kind of cosrue one could attend in ‘how to live with illness & disability & what you need to know now’.I really needed help (and still could do with some), in how to understand (and explain to others) the impact of illness and disability on my life. Social services say: “what help do you need?” I don’t know, what help will help? My illness and disabilities are a complex mix that have a complex affect on my life. Social Services expect you to just know what kind of help will help you – but you don’t even know what they can offer, let alone whether this will improve life or make it more difficult. DWP want to know how your illness and disabilities affect different areas of life – I didn’t understand the level of detail they needed in order for them to understand the real impact of illness and disability on my daily life. I have to keep remembering that to them I am a complete stranger, so I need to explain clearly why a particular situation (that is fine for other people) makes my life worse because of my illness and disability. It takes a long time to understand (as a newly ill / disabled person), the full impact of illness & disability, and to understand how to do things better given the new restrictions, and what help will help.

    1. 1) Prescription Costs is something often okloeorved and I spent an unnecessary fortune!Obviously, first check whether you qualify under income rules. If you get an income based benefit (eg income related ESA or income support) then you should get free prescriptions.If your earnings are low you may also qualify and can check via form HC2.If you don’t qualify for free prescriptions under income rules you should also check whether you qualify under the rather arcane medical exemption rule. There is a bizarre list of conditions which get free prescriptions including for instance epilepsy, thyroidism and Addison’s disease (among others). If you have one of these ALL your prescriptions are free. Go figure!Finally the prepayment certificate is great for those who have more than 3 items in 3 months or 13 in 12 and do NOT qualify for free prescriptions.It is a one off payment of roughly 100 per year (or you could split it into four 3 monthly certificates if finances required it). That then covers ALL your prescriptions for that period. Personally I literally saved hundreds of pounds via this.2) I echo the above commenter regarding looking up disability aids but would add a recommendation to get an appointment with an OT. I really didn’t want to do this, but it was the most helpful thing that happened. She had tons of suggestions to make life easier round the home, some of which worked brilliantly and some of which in the end didn’t, but were worth a go. A word of warning. Don’t necessarily expect them to provide the equipment they suggest (cuts and all that), but regard it more as a tailored individual disability specialist who can give you great advice rather than you having to look things up online with no idea of what to look for.I have heard conflicting reports from other people though so I suppose it depends a lot on the quality and helpfulness of the OT you get!3) As a general comment: don’t be afraid to experiment. You may have to do things differently now but that is ok! Just because at first you can’t do something you used to be able to do doesn’t necessarily mean you have to give it up long term. I wasted a couple of years not doing a few of my hobbies because I didn’t realise that I could in fact adapt and develop new techniques and it was “ok” to do so. For instance despite extreme shakiness and visual disturbances I have managed to find a way to do cross stitch even though at first I had to give it up. It took a lot of trial and error but it was possible after all.There is probably more, but this is getting way too long, lol

    1. I wish I’d known that becoming (obviously) diblsaed didnt mean I was less of a person.I wish I’d understood that my fears about using visible aids were stupid and disabling in themselves.I wish I’d had the courage to reject ‘help’ and advice that were actually making things harder for me.I wish somebody had been honest enough to tell me the truth about how this society *really* deals with people who have chronic illness/disabilitys. For example the facts that many people you thought of as friends will disappear,that the medical community have very little interest in helping you to have some quality of life,and that fighting for appropriate treatment/care will become your new norm. Had someone told me that the safety nets I’d blithely believed exist for people in need are a fantasy,that the ‘human rights’ people bang on about no longer applied to me,and that doctors dont always know best (or indeed know ‘anything’),instead of perpetuating the myths able-bodied people need to believe for their own peace of mind,my mental health wouldnt have suffered nearly as much as it has throughout this journey.And finally (because otherwise I’d go on all day!) I wish somebody had told me that not all disability aids have to be flipping beige, ugly and ‘medical looking’..For me it was the emotional/psychological side of things that I really needed help with at first. The first few ‘disability catalogues’/leaflets (full of old-people models) I was given ended up being thrown across the room because of my horror and denial that this was my world now. I’d never thought of myself as prejudiced against diblsaed people,I’d never been uncomfortable around obviously diblsaed people in everyday situations,but the presentation of disability I was given when my own body fell apart was repulsive to me. And I know from reading blogs and support sites that I’m not alone in that emotional struggle. So while knowing about things like Radar keys and VAT exemptions etc is important,its equally important to address the emotional impact of finding yourself in a situation where you need that information so that people can be empowered to use it instead of being scared to death of the alien world they’ve fallen into.On a slightly different note,I’ve recently written a ‘blog post’ about societys attitudes to wheelchairs versus all other forms of wheeled transport,and I’m looking for somewhere to ‘guest post’ it.(I dont have consistent enough energy/brainpower to have my own blog). Would you be interested if its up to scratch for your site?Lola

  2. What do I wish I’d known? Everything! My epilepsy was diesaognd in the Netherlands, where I was living at the time. I was given no information at all, apart from hand in the driving licence and take meds. It was pre-Web, so I couldn’t do any research online and I had no access to info leaflets in English. When I returned to the UK close to 9 years ago, my new GP organised my free prescription card for me but beyond that I still wasn’t given any really useful info. No one told me I could apply for DLA, or get a Radar key, for example. I learned everything the hard way or by diligently researching on the now-quite-decent Web. My care team has always been first class in actually dealing with the epilepsy itself but not one of them gave me any useful or practical info on actually living with it. It’s one of the reasons I wrote my book Epilepsy the Essential Guide when the publisher approached me – I was very motivated to put all that hard-won knowledge somewhere others could access it all in one place. And even now I’m still finding out things – I’ve always told dentists I have epilepsy, just in case I have a seizure during treatment, but it was only two years ago when I registered with my current dentist that I found out that epilepsy meds can cause real problems with plaque build-up and the subsequent issues that causes. Why did no dentist tell me before that I need to be super-scrupulous about oral hygiene and ensure I see a dentist at least every 6 months?

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