UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

Many autistic adu1ts I know were active1y suicida1 unti1 they got their ASD diagnosis and were sucessfu1 in getting into the 'support group' of ESA, as we11 as getting PIP.

This is another reason I am going to prioritise responding to this DWP consu1tation on the WCA.

 

And I've spotted another discontinuity in the IDP related to the Transforming Support white paper...

In the survey, in relation to the Employment section of Chapter 4, they say [my emboldened italics]:

The "impact of their vision" is not described in that section of the IDP. In fact, all the impetus of the "impact" is placed on the *employer*, and it's up to the "behaviours and actions" of the employer to accomodate pwME. How their White Paper is supposed to make that happen is not clear at all.

 

See my ear1ier post about this concurrent consu1tation -

https://www.gov.uk/government/consu...ing-better/occupational-health-working-better

Edit - These proposa1s are irre1evant to a11 but the most mi1d PWME.

 

The government are a1so working on setting up a 'Severe disabi1ity group' for c1aimants. Unfortunate1y I can't access the post, nor find anything on the announcement via Goog1e.

https://www.rightsnet.org.uk/welfar...plified-disability-benefit-assessment-process

They have often brought up that the support group for ESA was 'origina11y' on1y supposed to have about 300,000 c1aimants assigned to it. It seems this figure has stuck as from things I have read this new group is supposed to be about the same size. So I think a11 these proposed changes with the WCA (inc1uding its remova1 entire1y) is part of working towards this DWP goa1.

It's been mentioned in the green and white papers. The c1aimants in the new severe disabi1itity group wi11 be passported to PIP and ESA c1aims without having to be constant1y reassessed. Great for those who qua1ify, but the criteria wi11 be strict and on1y inc1ude those conditions which have a c1ear diagnosis and trajectory towards severe disab1ement.

Without ME/CFS being seen as a severe disease with a re1iab1e diagnosis, PWME, even those severe1y affected and having suffered for it 1ong term, wi11 not be put in this c1aimant group. So ME/CFS working age c1aimants wi11 have no protection from Job Centre work coaches who wi11 not understand how severe1y i11 they may be. This may be worth high1ighting in the ME/CFS de1ivery p1an.

 

I've been thinking a bit more about this WCA consu1tation. It actua11y presents c1aimants (and charities, p1us disabi1ity advisors) with the on1y opportunity to cha11ange and high1ight the dangers of the comp1ete remova1 of the WCA and the protection it offers, since that intention was made without any consu1tation.

Even if on1y the 'substantia1 risk' question is answered to show the harms the remova1 of this protection wi11 cause a chronica11y sick c1aimant, the negative effects being asked to engage in even 'minima1' work re1ated activity wou1d have on ones hea1th etc., it wou1d show that the remova1 of the WCA is not a 'benign' proposa1 by the DWP.

 

I agree with all you say @Simbindi I am def going to try to respond.

 

The irony with ME/CFS and PEM (and there is a really good ‘flip the iceberg’ slide in a presentation on how Occupational Therapists can approach/support ME from Amy Mooney https://www.s4me.info/threads/solve...herapy-in-care-for-me-cfs-presentation.29520/ ) is that adjustments need to ‘get ahead’ of the condition in the hope of lessening PEM and deterioration from continual exertion beyond a then lowering threshold.

and of course if it isn’t about pushing or keeping those already too ill but decent jobs adjusted to those issues then you’d have decent advocates in bigger workplaces because milder people could be ‘out’ and honest with themselves rather than having to self-bigot just to stay accepted and employed and for pats on the head that never actually result in more than you getting more ill and then abandoned but are used to keep you doing it to yourself as it is 'the only acceptable attitude if you have ME to publicly be doing, otherwise if you aren't visibly pushing and being positive and have it you definitely are outcast' (but I think that adjustment would take a huge push for very much better stsndard of pmedics running clinics and being heard etc)

which means DWP/government campaigns focusing on EDIT: those still in work who may not be ‘on the edge’ yet and oversighting employers actually doing adjustments without exhausting fights or games and encouraging those in work to apply for PIP and get electric wheelchairs and reduced hours before it destroys thru ability to work ever again is probably the only fruitful and useful approach. But they’d need to clear out all the old BPS-minded staff and get in proper medics and scientists and nurses for ME clinics that can be useful. And who could learn from the few biomedical experts left on what could help when people are on the start of s deterioration and what might support as well as making sure they get urgent appointments at that point to stop it being much worse.

I think we’ve been so tenacious as a personality type and so bullied and option less as s group it’s proven that the threat and leaving to fall through cracks doesn’t work for health outcome and therefore work in ME. And once people have got permanently bad (which is the few who might have got benefits now for those with ME) anything that helps just means more of a chance of less deterioration and dependence - and because it’s about limited energy eg giving someone something that reduces energy with one hand and the typical assumption of laypersons that at he same time it will mean you can expect ‘more’ in another isn’t the situation those with ME are in when they are that poorly.

It may be that those who are milder however - whcivh would be interesting to map to different levels of other better acknowledged disabilities - being given proper energy saving tools like electric wheelchairs and reducing stairs and so on it would make when they try and push through holding onto s job less damaging/bad health result long term.

 

Is this the consultation we need to reply to, or is that somewhere else?

 

you dont happen to have a link to that slide/ presentation do you Bobbler?

 

took a while for me to find it: https://www.s4me.info/threads/solve...herapy-in-care-for-me-cfs-presentation.29520/

now going to insert in its place in the comment too

 

Agreed that organisational responses are particularly important for pwme and need to be done by charities. Even if they do find some way of reaching out to those (and sub-grouping them if you think severe vs moderate vs mild might have different issues) who they are providing the voice for - they'd need to find a more private way than expecting people to email in or social media though.

A lot of us not only have such illness levels that contributing is very difficult/impossible, but I think the active incitement there has been by the past 'ideas' from certain areas towards those with ME has meant that we have other things preventing us from having a voice on things that might normally be heard. eg NDAs and it being made very hard to access/enforce employment rights due to the misinformation that would be 'used' as 'a debate' in tribunals for injury or discrimination or the like making the mountain even more vicious and hard to face and risky. And just on day-tod-day behaviour of others antisocial towards us or just for health then we have to think of the risk of how easily our health is very very harmed by those who would react badly or bully us in retalliation

We could be very easily 'managed out' of both our work, lives and safety by just increasing our hours (or intensity or working conditions) so our health drops and then game-playing is easy with ME because of the energy-exertion threshold nature of the condition, but this method harms our health too as it ratchets up over time for long periods often.

So contributing to these things could be very hard, from an exertion and emotional perspective, being able to be believed when it can be so awful ohers assume it 'fiction or exaggeration' when it might be underplaying it, and the horrid PR from people like Chalder mysigoinistically says 'they are just whingers/looking at it wrong' to cover any abuse we get and its impact.

And if most/many(?) can't or aren't safe to speak their full story there aren't the numbers to show it being a pattern/make it more believeable that would show this is a big 'normal' happenning to many. And by speaking for a combined voice it makes it less personal to either pwme or staff, and more highlighting situations that could and do happen

EDITED

 

bless you @bobbler thanks

 

This one -

https://www.gov.uk/government/consultations/work-capability-assessment-activities-and-descriptors

I'm a1so going to use it to state the dangers of removing the WCA comp1ete1y in my answers to the 1atter questions. It asks views about removing the 1imited capacity for work and work re1ated activity group comp1ete1y and putting a11 these c1aimants in the WRA group, so this is an appropriate p1ace to cite how dangerous removing the WCA itse1f wi11 be. There are other re1evant questions too, such as what the minimum work re1ated activity shou1d be - obvious1y nothing! Me1 Stride has c1aimed no one wi11 be forced to do anything that is harmfu1 or they aren't capab1e of, though he's obvious1y intending to 1eave these decisions to the Job Centre work coaches!

 

sorry I haven't read all posts here but an important issue that all the assessments don't seem to take into consideration (ESA and DLA I don't know about PIP) is that being able to do ordinary daily necessary activities (eg getting washed, dressed, preparing food etc) are all used as indicators of how 'well' you are. But (particularly for pwME, and those who live on their own and have no additional help),
what if most, if not all, of the time, this is all you are able to do.

I remember the first time I filled out a DLA form and it asked what help you might need to do things like 'go on an outing' (can't remember the exact wording), but they weren't interested in things like how you managed shopping, housework, laundry, dealing with finances etc etc.

So energy for any kind of work related activity would need to be in addition to every day basic 'activities' otherwise you end up not being able to do the basics of looking after yourself.

As this is the case for all 'moderate' pwME (50% of pwME)
it is something that the charities should have raised much more a long time ago.

They seem to rather concentrate on helping 'mild' sufferers (25% pwME) staying in work.

 

Yes. Absolutely.

 

The numbers (2021) around which the debate/proposals etc revolve: Exploring Ways to Improve the Design of the Benefit System

 

Yes, spot on.

I'm posting my thoughts on the WCA consu1tation here as I have them, so others can use them in their responses too. I won't be submitting my responses to nearer the dead1ine as want to get across a11 the important points.

This is the re1evant part from the consu1tation document -

This part sounds 'so fair', but anyone who has gone through the WCA or had experience in the WRAG knows that the practice is very different. This is especia11y true for PWME as the extent of our functiona1 1imitations is just not be1ieved or ref1ected in the WCA scores. The mobi1ity question is the on1y one that we can rea1istica11y score the maximum 15 points even though if the re1iabi1ity criteria were to be proper1y taken into consideration many of us wou1d score 15 on some of the other criteria (e.g. I cannot re1iab1y and repeated1y press a button, chew and swa11ow food etc.).

 

I'm on1y just starting to think about how to answer the above questions, but I think it wi11 be important to quote from the consu1tation document proposa1s with examp1es of how PWME can be harmed (in my case I'm a1so going to cover autistic peop1e). The consu1tation document focuses on the substantia1 risk app1ying to menta1 hea1th, but in 1aw it a1so covers physica1 hea1th. Obvious1y whether the risk is to a c1aimant's menta1 or physica1 hea1th the risk is sti11 'substantia1' if it's going to make them severe1y i11 and/or put others at risk.

 

This frustrates me so much. A1so trying to stay in work eventua11y 1eads one to being too i11 to manage other aspects of 1ife and becoming too severe to work anyway for many sufferers. ME/CFS is not a 'static' disease, the effects of over-exertion are cumu1ative and other 1ife factors cannot be contro11ed or p1anned for (e.g. getting another infection etc.).

 

I anticipate them consu1ting on changing the PIP descriptors next so that 1ess peop1e qua1ify for support.