Together we Shout:
The ‘We are Spartacus’ Community Submission to the Government Consultation on Assessments for Personal Independence Payments (link)
The culmination of forum discussions, facebook help-a-thons, website comments and our PIP survey is an evidence-based, high quality, forensically detailed response to the consultation on the proposed assessment for Personal Independence Payment (PIP). The document, which includes a foreword by Baroness Tanni Grey-Thompson, was submitted to the DWP this afternoon. We’ve published it so all those who share our concerns about the Government’s proposals can use it to fight for a benefit that works for disabled and sick people.
The document includes a huge number of recommendations, some major and overarching and some detailed and technical. It’s hard to identify our ‘key’ recommendations, but here’s a taste:
- The addition of a new activity based on the need for general supervision
- That the activity of bathing incorporate the cleaning of the entire body, including limbs and extremities
- That significant changes should be made to recognise the difficulty and expense surrounding the management of incontinence
- That the difficulties associated with being unable to handle paperwork and write be taken into account in relation to communication and managing finances
- That points awarded take account of the high cost of some aids and appliances such as voice synthesisers
- That the benchmark for considering wheelchair use be increased from 50m to 200m
- That more account be taken of the need for walking aids (other than wheelchairs), especially those that need both hands to be used
- That, in addition to asking whether the claimant can undertake an activity safely, reliably, repeatedly and in a timely fashion, the assessment should also ask what the claimant can do without severe discomfort.
- That the Government ‘take every regulatory, contractual and advisory opportunity to ensure that problems reported with the WCA… do not occur in the PIP assessment’.
For details of all our recommendations, take a look at the document!
We also urged the Government to give careful consideration to some overarching issues we’re all concerned about – for example, the danger that the introduction of PIP will seriously compromise disabled people’s independence and will increase costs for other public services such as the NHS and local councils.
We will be producing the document in accessible formats later this week and we will also be encouraging everyone to carry on campaigning on some of the key recommendations we’ve made. This is NOT the end… this is only the beginning… of a new phase of engagement to protect our lives and our well-being.
whether undertaking said activity will worsen condition and prognosis
Whether the activity causes fatigue or pain. Fatigue being something people like myself do not find easy to even DO most activities because they cause immense fatigue. Which is why I fear the WCA as they do not take in to account how my possible boss will feel when I am too tired to continue every single day after about an hour!
Can’t seem to see a link to the full response document, to which this post refers us – sorry if I’m being stupid, I only just woke up!
Click on the document title, above the graphic!
Oh dear! I thought I had, but it must have been the one above. Thanks, I’m not usually so hopeless.
In response to Mrs Wupple and Sarah C.,
“safely” encompasses the first point.
We have made recommendations for the second as follows:
1) We recommend that a fifth factor be added to supplement “Reliably, Repeatedly, Safely and
In a timely fashion”; the assessment should also ask what they can do “Without severe discomfort”.
2) We recommend that guidance and training materials for assessors make it clear that they
cannot rule out any pain, nausea, vertigo, fatigue or other discomfort reported by a claimant.
I want to thank each and every one of you who slaved over the production of this document; I so hope the Govn take notice. Well done to you all; now for goodness sake rest up and take time to celebrate your achievements on our behalf. Again sincere Thanks
Jayne
Well done all involved in this comprehensive response.
Pingback: No longer disabled enough: Cameron’s brave new world | Here's the Kicker
Jayne, obviously we hope that the Government takes notice; even if they don’t, this document should still be useful. Everything in it is based on the input we got from all of you, and supported by authoritative references, so it is evidence-based, and if the Government ignore it, everyone will know they have. This is why we want as many allies as possible to get their hands on it, so they can use the points we’ve raised and the justifications we’ve developed.
I get fatigued very quickly and without warning which in part will depend on how much pain I’m in but should i fall ill at any point i am an immediate danger to myself or others so the government needs to address this point
What i do know from good inside information is that the DWP etc will only attack the weakest those without a carer or those that live alone
they will send out letters about you returning to work and if that fails they will stop your money just for the hell of it and then get the tax man to write a letter to you to say you owe tax just to keep the pressure fully on you at all times in the hope you will commit suicide
they have spent the pass two years doing this to me but my mp and others are still fighting my corner as they know it’s a fight to the death
Thank you all who have put so many hours and so much effort into producing this very impressive document. It’s comprehensiveness and cogency is awesome.
I realise that it would be easy to nitpick things and I’m really not doing so, but I do have one question…….which particularly relates to those of us who live alone, have no carer (interesting/worrying point about this from Fourbanks, above) or live with others who are disabled.
No benefits assessment ever takes note of domestic chores (cleaning/laundry/bins/washing up etc). I know you’ve recommended that the ability to keep a kitchen hygienic should be taken into account and if that was included somewhere it would cover a lot of domestic chores. But I suspect that because there is no specific recommendation they will ignore this one.
Keeping a home safe and hygienic require domestic chores and is one of the areas with which I have huge problems – the costs of getting help with this are huge. While many people choose to pay someone to do their clearning etc. choice is everything and I just can’t do some things.
Does anyone know why this is always omitted.
Again, thank you all for the massive amount of work to produce this brilliant submission to the consultation on our behalf.
Power to the Spartaci on Mayday – up the workers and non workers!
D. Gordon, I’ll answer this one because I think the answer is funny in a terribly sad way.
The reason DLA does not cover domestic chores stems from the fact that the care component is supposed to cover “attention which relate to a bodily function”.
In turn Lord Denning in the Court of Appeal in R v National Insurance Commissioner ex parte Secretary Of State for Social Services (1980), gave the following list of bodily functions: ‘breathing, hearing, seeing, eating, drinking, walking, sitting, sleeping, getting in and out of bed, dressing, undressing, eliminating waste products, and the like, all of which an ordinary person who is not suffering from any disability does for himself, but they do not include cooking, shopping, or any of the other things which a wife or daughter does as part of her domestic duties or generally which one of the household does for the rest of the family’.
This definition continues to this day. What you are supposed to do if you don’t have a “wife or daughter” willing to do her “domestic duties and chores for the rest of the family” I really can’t imagine.
It is a travesty that this definition is still here today in the 21st century. Sadly I believe that PIP will continue to make use of it. Therefore it would require a law change to allow domestic chores to be taken into account.
As you observed we did our best and tried to make the point that it needs relaxing somewhat using hygiene as our way in.
See here for my source: http://www.lawcentreni.org/EoR/benefits-and-tax-credits/dla-and-attendance-allowance.html
Wow…..and more wow……. and a few other choice interjections…….
thanks for the info which is interesting and useful to know. Good old Lord Denning, so many of his rulings added to the justice in our society and made so much sense……….
Now, where can a heterosexual woman find a wife…….perhaps a google will help!
Seriously, though, I realise there are many battles to fight, but it is outrageous that this is allowed to continue.
Thanks and well done to the Spartacus team who put the submission together – you’ve done a great job!
Whoah, someone said THAT in 1980??? I’m more disgusted they said it then than that it’s still used now. At least cooking got admitted to DLA, eh?
I expect that logic is part of it; also, that they don’t want more people to qualify. The public explanation I’ve always been given is that the things they do look at (for DLA, more so for PIP) are meant to be representative of a complete living activity.
I’ve plastered that lovely little tidbit on many a feminist forum I belong to, which may actually get the yet-to-be-disabled talking. It seems a common assumption that we have carers to do all this sort of thing (the Social Services Magic Elves) but there’s absolutely no acknowledgement that Soc Services has cut back dramatically on what sort of care they will fund, so that many people who need carers don’t have them. Constantly told that councils are strapped but I read a report yesterday that there isn’t ANY reliable documentation used in any council to actually track what expenditure for care per annum actually is. They seem to be scrimping on funds just as a matter of course.
Ugh. Sigh. And Meh.
Still, as an aside this was an amazing piece of work. I know there was a bit of anxiety yesterday about the fact there was precious little response in the news or the government but I think that’s probably due to the fact that the government will be scrabbling to find a way to bury the report or respond in nice-speak. I’m trying to forward this report wherever I can, in order to plaster it everywhere. It may be out of the HoL’s hands now but there’s still the Greens, Labour and a few Condems who haven’t sold their souls yet who may be interested.
Also in the section “incontinence” should be included “obstructed defecation” i.e. impossibility of emptying the rectum without “splinting” (pressing against perineum and forcing solids out = damage), or “digitation” – having to use gloved fingers to evacuate the bowel. Otherwise this real problem will continue to NOT be seem as a problem. The problem can result from pelvic organ prolapse – rectocoele. The condition does not register with them at all.
Oya’s Daughter: this was a consultation submission, so the response to it will, initially, be rolled up in the Government’s consultation response. We shall have to see how that goes. More importantly, it isn’t entirely out of Parliament’s hands, as the initial regs for PIP assessment will, IIRC, be subject to the affirmative procedure – they will have to have a motion of each House to approve them. They’ll also be subject to a little committee scrutiny, and I imagine the SSAC will have a look as well.
Hat: The document isn’t supposed to be comprehensive on every detail – it’s giving examples about the sort of help people need. One would hope that the actually-funded charities for various conditions will have gone into more depth about the problems faced by their constituency. Not read any as long or broad as ours, but I’ve only seen a couple.
Thank you is inadequate. But I do thank you from the bottom of my heart for doing this, for doing it so well, and for the sacrifices you have had to make to do it.
Pingback: We are Spartacus » Blog Archive » How can I help?
Pingback: DWP stays silent on DLA cuts advice from councils – DisabledGo News Blog
Pingback: DWP stays silent on DLA cuts advice from councils | Coalition of Resistance Against Cuts & Privatisation
I need some advise and don’t know what to do or where to turn anymore?
I’ll keep this as short and as straight to the point as i can so i don’t cloud issues.
Up until 4 years ago we were working “and always have”, worry free and healthy, THEN…..
my wife fell, hit her head on the corner of a curb leaving her with brain damage to her right side and with uncontrollable gran mal epilepsy which has got so progressively worse she’s renderred wheel chair bound.
2 to 6 violent seizures per 24 hour period,
1 to 5 drop attacks per 24 hour period,
3 to 6 vacant seizures per 24 hour period etc etc etc.
3 years ago i had to make the decision to leave my beloved job and become her 24 hour carer, Every seizure she looses bladder and bowel control so imagine the work cut out just in that aspect of things, undressing, showering “sitting” drying, dressing etc and all whilst unconcious. That is just the tip of the iceburg of care i have to give but i want to keep this simple.
2 years ago she was awarded high rate disability and the car was a god send. not just being able to get my wife out of the house but to get our 2 children to and from school as well, which is a nightmare in itself because of the frequency, randomness and severity of the seizures but the car helped obviously.
However, june 2011 the benefit was stopped and the car taken away so we appealed as the doctors and neurologists both stressed in reports how ill my wife is and how severe her care of epilepsy is affecting her with no responce to treatment what so ever, and also state that for my wifes safety its NOT advisable to do or go anywhere without my wife being in a wheelchair.
The appeal was on 16th May “2 days ago” and lets just say i was left in tears and felt as though i had let my wife down as she couldn’t be there through being in hospital suffering 4 violent gran mal seizures the previous night and only got released from hospital this morning 18th.
My wifes body is a wash with scars and friction burn scars and stitch marks through falls its awful. She’s been admitted into hospital over 200 times in 2 years and they STILL said NO????
Not only have i got my wifes needs to look after but 2 young children and a house and our dog “all reponsabilities and i fear with absolutely no help from the government now that i’m going to struggle to do this all on my own again, the kids will miss school because i can’t take my wife out if she’s going through the motions of seizuring or just had a seizure and they’re not at an age they can take themselves….. I feel so let down i don’t know where to turn which is not like me as iv’e always been a really positive person but these idiotic baffoons have really bushwacked me!!!
Any advice??????
Sincerely
Gary
Hi Gary,I’m sorry to read your experiences with everything. I would say that you need to speak to the Citizens Advice Bureau urgently. They will be able to sort this out. I hope this helps, all the best, Elle.
Pingback: Doctors Urge Government to Scrap Callous Disability Tests | Andy Worthington
I am 73 years old and have suffered from Asbestosis from the age of 55 when I had to stop work and gained high disability rate, which allowed me to get a car. If I lose the car-component, I am then a prisoner in my own home.
The problem is that I cannot be sure as to when and what happens to me.
I might also state that I received Industrial Benifits but as soon as I gained retirement age, the benifits were tasken out of my old age pension. (I would like any who suffer from Asbestosis to be aware that any benifits are taken from their pension once they reach retirement6, which leaves them worse of!)
Ron Wragg…
You should be fine Ron as pensioners won’t be required to move from DLA to PIP. So you don’t have the same worries as those of us who are younger!!
I know this website provides quality dependent content and other material, is there any other site which
offers these kinds of information in quality?
Garys story is so sad,the family unit hes trying to hold together his sacrifice and suffering,his wifes severe disability,yet bureacracy mocks his effort with its decisions.Hes a hero in the front line but his worth is crushed.
What hope is there when gun slinging cowboys at the DWP and ATOS join forces,which appears more apparent after the original tender documents were leaked on the internet.
Atos named the charities it would be working with,stating the named organisations would be cooperating in the initial eligibility testings of its proposed PIP pilot programme.
The named deny the association and one is considering the possibility of legal action.There should be public outcry of deception in obtaining the lucrative tender,whilst the DWP ashamedly say the charities issue is unimportant and had no influence on there decision in awarding the contract.So why was it in the tender?
Atos respond with a get out statement that “they hoped for cooperation from the groups in the sharing of expertise and knowledge for the benefit of disabled people.”
The DWP declare there will be no investigation.So once again disability is dismissed and able bodied providers impose there equality,on the disabled community.
Equality however doesnt exist for disabled people,an amputee may no longer qualify for a mobility award unless they have lost the limb in active military service.Mr Cameron has promised our soldiers this.What about teachers nurses police,were do exceptions begin and end.Rash decisions irrational goverment,perhaps all we can expect from a coalition government.I thought he was PM not god its tough at the top but we need good decisions not god decisions.Turning goverment into a circus and himself into a clown and no one is smiling.
I must be missing something I thought a reformed system would help me navigate my limitations not impose able bodied expectations on me.
In the name of economic policy and recovery,its selected target disabled victims with incurable illnesses,irreversable physical injury,sufferers with mental health issues and our carers are being crippled even more by the system
It gets better the circus,money go round,is almost money laundering.Atos have subcontracted medical asessments worth a contract of 22million into scotlands NHS.Its working on other partnerships with NHS and contracts will be anounced soon they say.Lanarkshire was in the tender document,it was already agreed .I think thats deplorable and yes its true I have read said document from the governments web site and to me
It seems squanderous scandalous and plain idiocy by the government.
Public money our money used to buy private services,which the contractor then sells back into the existing infastructure of the state sector the NHS,who become the provider.At this point Im lost,is it going round in a circle and were paying twice to save money.
Were sure as hell not solving the problem when the goverment add more layers of beaurocratic inefficiency in the name of reforms that crush the economy further at the expense of the vulnerable.
Pingback: DWP stays silent on DLA cuts advice from councils - Yourway | Yourway