So what on earth do people with mild disabilities do?

(155 Posts)
Tabsicle Sun 03-Jul-16 17:28:38

This was triggered by a couple of conversations, and (I'll admit) a thread on here.

Lately it's seemed to me that as a society we've basically created a set up where if you're severely disabled there is, in theory, a safety net (I know this is being torn apart at a rate of knots) and if you're very healthy you can work, but there's a huge spectrum in the middle where people are increasingly screwed.

I was talking to a friend of mine today. She's got rheumatoid arthritis, and it hits her hands quite badly at times, but not consistently. She reckons she's fine for most of the time but, often triggered by bad weather, can have periods during which her hands just seize up and she can't do anything. She's had massive issues keeping jobs as a result because of her sickness record. She's been told she's not eligible for ESA because her condition is so variable and she's functional for the majority of the time, but the JSA people are threatening to kick her off JSA because she has had issues with attendance at a placement due to her hands, and she's probably about to receive a sanction based on the phone call she had today.

I've read similar stories here - people who are well enough that they can't claim ESA but can't hold down jobs due to significant issues with attendance. What on earth are these people meant to do? It just seems so spectacularly unfair.

YourPerception Sun 03-Jul-16 17:33:20

It is not just the conditions and income that makes life hard it's living life and dealing with society too be it agencies or the public.

pinkdelight Sun 03-Jul-16 17:34:45

What would you suggest? I understand but can't help thinking this is the nature of a system, that it necessarily caters for the extremes but it's the mass of people in the middle who have to keep the machine going and make do. Are there countries that have cracked it, with more bespoke solutions, that we can learn from? Or is it inevitable?

splendide Sun 03-Jul-16 17:42:21

My suggested solution is a sort of citizens income but means tested to some extent. Maybe the state tops you up to 20k or something.

Basically I don't mind people staying on the dole for any reason and it should be enough to live to a fair standard. The idea is that this would push up wages as a nice incidental effect.

AyeAmarok Sun 03-Jul-16 17:48:46

I agree, it's very unfair.

But I am struggling to think of a workable system that would be fair.

Perhaps people with mild disabilities need to be a sort of "protected person" in employment, where if they are off sick for reasons related to that health issue, they cannot have their employment terminated, but perhaps the employer doesn't need to pay them sick pay but the government tops it up to SSP while they are absent?

In a similar limbo between severe disability and basically fine. There is surprisingly little (zero) help available.

dogdrifts Sun 03-Jul-16 17:52:36

Dd2's snhv uses the term 'walking wounded' as shorthand for being in this position.
It is frankly terrifying in terms of looking to her future.

Tabsicle Sun 03-Jul-16 17:53:07

Germany apparently has a system of assessing disability on a sliding scale and then topping up income depending on how much they think the disability affects the person involved. So someone might be able to work part time and then receive reduced benefits. I believe that every company over a certain size has to have X% disabled employees which I think is pretty helpful. But we have an awful attitude towards disability and employment all the way through society in this country.

MrSlant Sun 03-Jul-16 17:54:21

Also literally the first day they were in power this government cut a grant available to people with disabilities to help them start new jobs, for example if someone has sight problems they could have equipment to blow up writing to a size they could read or someone like me who cannot use a telephone because of deafness could have equipment to make their hearing aids work with the office equipment. So not only are they cutting benefits allowed they are making it harder for people to find work in the first place. I've had no work on and off for a while and the majority of office jobs are now out for me as I can't answer the phone etc. Not joined up thinking at all.

mrgrouper Sun 03-Jul-16 17:55:50

I get DLA and work but when it gets transferred to PIP I am scared they will say there is nothing wrong with me because I am working.

YourPerception Sun 03-Jul-16 17:56:50

There are inappropriate toxic work place norms going on. Basically set up and run by the well and discriminatory against the I'll and disabled. The patronising and victimisation of professionals is dreadful in my experience. I am left with the realisation everyone has issues and some are attracted into positions of authority over the vulnerabile to make themselves feel superior.

There needs to be a total shift in thinking.

Tabsicle Sun 03-Jul-16 17:59:44

YourPerception agreed. Entirely. Appalling disability negative attitudes seem to basically be the norm over here.

BathshebaDarkstone Sun 03-Jul-16 18:00:24

I don't know, it's not often I think DS1's lucky to be as ill as he is, but if he wasn't he'd get nothing. sad

AgnetaTheViking Sun 03-Jul-16 18:02:10

Where I live disability is broken down into quarters. So I've been assessed as 50% disabled (although they're trying to raise that to 75%).

So I get 50% of any disability benefits and that is completely separate to the other 50%. If I register with the jobcentre I'd only be required to look for 50% work and any income from working that 50% does not affect my disability benefits.

I'm currently a student but am only doing 25%, which is why I'm being pushed to 75% disability. But I'm not ready to accept that defeat.

mirime Sun 03-Jul-16 18:02:54

I don't support the way sanctions are done generally, but if someone has health problems or a disability they should not be able to be sanctioned for anything related to that health problem/disability.

gonetoseeamanaboutadog Sun 03-Jul-16 18:05:23

It is unfair and people who don't meet the thresholds but who really can't survive any other way are driven to do what you might expect.

There are 'advisors' scattered through charities like Women's Aid (the one I know of anecdotally). They know the key phrases. They will look at your form and doctor it for you so that it meets the threshold.

Some benefit fraud occurs because there wasn't any benefit to begin with, and there should have been.

gonetoseeamanaboutadog Sun 03-Jul-16 18:07:10

And this is also very discouraging to people who would like to get better but know that if they just get a 'bit' better (or are seen to be a bit better), they will suddenly lose everything they need to survive.

MarklahMarklah Sun 03-Jul-16 18:07:17

I see negative attitudes toward 'invisible' disablities all the time. I have friends with Dercums' disease (ridiculed for being fat) + mobility issues (ridiculed for being lazy). I have a friend with possible fibromyalgia/possible ME and severe depression - she's constantly told she's lazy.
I have a friend with dyspraxia and related learning problems and another with physical and mental health problems (including autism).
None of them use a wheelchair, all of them are eloquent, funny and engage to a reasonable extent with others.
All are told at times that they are 'putting it on'.

Awful.

BlackeyedSusan Sun 03-Jul-16 18:07:41

I think the intermittant illness would be more difficult to find work with. if you struggle with x thing you might be able to find a job where you only do y and z.. if you can do x sometimes, people will start to think you are faking/awkward/can really do it if youwanted to... etc. which is shit of them

dd may for example struggle in a job that requires someone to stand or walk all day, but be fine in something where she can sit down regularly.

Birdsgottafly Sun 03-Jul-16 18:08:54

This is what the DDA and DLA was set up for. Then it was undone and is going to be further, if our Working Rights aren't protected (under the Tories, they won't be).

I worked voluntary in Welfare Rights, those with mild and/or changing disabilities, including Mental Health, were the groups most sanctioned and living in poverty.

In terms of practical help, Charities, try to fill the gaps.

I've been seriously ill, since November, I'll be better just after Christmas. Luckily I've got my DDs to help, but my gardens etc are a mess, my house not as clean as it should be and If I was on IS, I wouldn't be able to afford to live.

YourPerception Sun 03-Jul-16 18:08:59

All professionals want to do nowadays is passed the problems on and nobody wants to take responsibility. Sign posting is the number one go to option. Option two is to force a square peg into a round hole and victim blame. There is very little actual help at all. This was happening before the cuts.

Rainbowshine Sun 03-Jul-16 18:15:57

Tabsicle if you are in the UK the quota system you refer to was abolished at least 20 years ago. It's the Equality Act that applies now so employers have to make reasonable adjustments for health conditions that would fall into the definition of a disability. But if a person cannot fulfil their contractual obligations to the employer (attending and working their hours being one of these) then yes the person may find themselves dismissed due to capability/health/attendance. I know I have given role in this position annualised hours contracts so they can work during good health periods but not when they are unable. The "good" zero hours contracts also provide for this too, if the employer is willing to consider it and it works for the business.

Tabsicle Sun 03-Jul-16 18:17:05

AgnetaTheViking - that sounds very positive. I'd also like a more supportive approach from the job centre when it comes to people who can manage some jobs and not others, which doesn't happen hear at all.

WiddlinDiddlin Sun 03-Jul-16 18:18:46

This is why I am self employed and do little bits of lots of things (mainly art based or dog training based).

I am disabled and get DLA but I am not incapable of work... however I am unemployable.

This is the major issue that the government is basically ignoring and the majority of the population just do not grasp.

If you have a condition that fluctuates, if you have a variety of illnesses that are disabling, if thats as well as a physical disability... realistically, big companies can't employ you because their sickness/illness policy doesn't allow for it even if they can afford it... they can't have a sickness policy that applies to some employees and not others..

Small firms that have the ability to be flexible, can't afford to employ us.

I certainly couldnt afford to employ someone who was unreliable both in turning up on time but also in being able to complete the full days work, so I couldn't expect to find an employer willing to do this.

So I am self employed - which is a lot harder and of course not everyone can do that.

I wish I knew what the answer was.

StillMedusa Sun 03-Jul-16 18:21:10

In a word, it sucks.
My DS1 is a young adult with ASD and mild/moderate learning disability. So too able for day centre type care, not able enough to ever be independent. To able to get supported living without a massive fight, not able to live without us doing all the daily tasks that being an adult entails.
Capable of a simple part time job, not able enough to sustain himself.

I'm planning on living forever :/

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