So what on earth do people with mild disabilities do?

[Tabsicle]

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.

£70 a week really is derisory isn't it fairy?

Just5 - I think it is, I was earning more part time when I was at uni and then I was only working just to have money to spend really as my living costs were covered largely by my grants and loans (since I lived at home rather than spending a fortune on campus). If you have bills to pay, mouths to feed...if you're ill anyway the last thing you need is to be worrying about money.

Rinoachicken I get PIP for mental health. I currently work full time.

That's intriguing. I got the impression that for mental health, to be "ill enough" to qualify for PIP meant you couldn't possibly be well enough to work. (Even though it's technically nothing to do with abulity to work).

I think the key is finding a workable, flexible support system that is fair to everyone. We really should be spending time in other countries, seeing what works, what doesn't.

Most of us, even severely disabled, imho would be better off feeling that we actually contribute to society, through work. So I think the emphasis should be on how to make that happen. Most people can do more than we think if we give them more a chance.

We used to write people off, either with mental health problems or disabilities as complete dependents, totally incapable of contributing to their own or others care. This is so untrue. It's got better but there is still a tension between expectations of capability and a safety net.

It is too easy to fall into not working if you have a disability, workplaces may discriminate, you do not get enough help to find work that suits. And also, people I know have just given up, become a bit depressed, go into 'the welfare system', which in some ways is easier than trying to keep in the workforce, and it is a vicious cycle.

I like the idea of a 'basic wage' for everyone, no matter who they are and what they earn, for life. It could be a safety net. Yet that doens't take into account that some have such severe needs that they do need a lot more than a basic wage.

My child has special needs and the one thing I would like above all else is for him to be able to contribute when he is older, to work.

And if you can have DC and bring them up, what about bring autistic means you can't work??

I have autism, that's why I don't work. I also have children. I am shocked that in 2016 people still don't have even a basic understanding of how autism affects people. I am genuinely lost for words at this comment.

I have Cerebral Palsy and a moderate hearing loss in both ears, the CP is pretty mild I.E I can walk and I can generally do day to day activities with assistance from my wife or friends etc, however there's plenty that I can't do such as cook a meal, carry a drink to the table, drink from a glass (I use straws), I can't use stairs without assistance or cut food up etc.

I've worked since I left Sixth Form but I do get DLA too which over the years has been a massive help, at the moment I have a reoccurring problem with one of my feet so sometimes I get a taxi home. If I didn't get the DLA then I'd be very reluctant to use family money to fund taxi journeys, no matter how much pain I'm in.

When I move from DLA to PIP I do envisage a bit of a battle because looking at me you wouldn't realise how much I struggle with but I'll deal with that when the time comes.

oncetherewasthisgirl

That's not been my experience. I've always been totally open about working full time if that's what you were thinking.

Being in work gives me structure to my day and a reason to get up in the morning.

I can manage in my job though I do have ropey moments. However I rely on my husband to manage my medication and make sure I keep appointments, to cook and shop, make sure I eat regularly, wear clean clothes, and to be emotionally there for our children when I am not able.

Evidently that makes me 'ill enough'.

My psychiatrist always sends a report so maybe that helps.

I only claimed PIP in the first time at my CPNs urging. It helps cover my prescription costs, which are high because I only get a months worth of meds at a time due to my habit of self-poisoning, sometimes I only get a fortnights worth.

I don't get any other benefits except Tax Credits.

My employer does actually allow staff with disabilities to be off sick without the usual policy applying. Also time off for medical appointments, and all staff are allowed flexible working time and to work from home. I believe a lot of the trouble is caused by this incessant need for people to be seen to be in an office, even if they could manage at home perfectly well. My job involves looking at workplace adjustments and championing change, especially for mental health, but when I was looking for a mentor I couldn't find a soul who had a condition like mine and worked in grades above mine in what's perceived to be a 'high pressure' industry.

rino get a prescription prepayment card. £10 a month and it covers all your prescription charges. As someone who gets 8-10 items a month it saves me a fortune.

It depends what the disability is. I am hard of hearing (moderate loss) and would struggle without my hearing aids. So the only effect on me is that I have to remember to carry spare batteries and take 'listening breaks' as I can get tired from too much lipreading. I am an academic who works from home a couple of days a week and colleagues help me by picking meeting rooms which are furnished and not too echoey, so that is fine. I also have a blue tooth gadget to use with my phone snd PC. Having sporadic, unpredictable periods of illness is much harder to cope with than a stable condition like hearing loss.

Oh, I agree it can vary according to the condition. I am disabled myself – type one bipolar. In my case, I’ve now got a stable set of meds, and the ‘reasonable accommodation’ I require from my work is that I be allowed to work flexibly to go see my psychiatrist, and I’ve also got a care plan that says if I am going through an episode I can work on flexible hours (so if I’m depressive, I can start later, work later) and if I get properly sick I can either drop to part time hours temporarily or take unpaid extended leave.

I’ve not had an episode in several years, so all it really means is that I vanish for two hours once a month to see my CPN, and every six months I see my psych for two hours. And that’s pretty easy for my employer to manage. I was mostly thinking of people whose disability does affect things like their attendance, and can’t be helped, but isn’t severe enough for ESA.

My DH has had various respiratory issues which have really impacted on his working life. Thankfully, he’s now reached a point in his career where he is able to cut back his hours to part time, and work flexibly (from home if required) and still bring in a reasonable wage, because he’s got a very good track record in his industry, and had hit a pretty senior level. However, I know when we were younger and he was trying to make his name, he’d do things like leave A&E at 4 am to be in work for 8 am, because he was scared of more sick leave, and he did lose jobs for his attendance. He was lucky in that his condition has always tended to go away for a few years, then come back with a vengeance for a year, then away again, so he ended up with a patchy CV, but I think if he’d been only slightly worse when younger, we’d have struggled a lot more, especially when we’ve both been going through rough patches.

I guess a lot of my anxiety is a real sense that there but for the grace of god, go I. I don’t think I’ll ever be able to get ESA. I’ve always had long periods of stability, punctuated by periods of severe mental ill health (nine months off work at my worst) and that isn’t something the benefits system is set up for, but neither are most jobs. It’s a real worry.

Most people have some earning capacity. But employers need to make reasonable adjustments and more part time/flexible options are needed. I think people who haven't been ill have no idea and assume there is 'something' out there to help.
I've had a chronic condition for 10 years. Fortunately work part time. initially due to DD but in the main due to my health, I can work but not full time.
Like many employers mine only pay ssp. I find many people who work in public sector/lare companies don't understand this, yes you may get paid if you are off but that is a perk of your contract not the law.
I've had at least 20 general anesthetics but each time taken a week off which for me working part time hasn't been enough to trigger ssp. Yes I get time off unpaid for appointments. My work piles up waiting to be done.
For my major surgery I had 2 months off, most ladies have at least 3 or 4. I got ssp for that £70 a week.
Also the cost of treatment, I have a rare condition so have to travel to London from the north west. Lose a days pay plus the train fare. Then the NHS cancel at that last minute, I've lost hundreds of pounds in hotels and train fares. People say oh can't you claim it back?? No unless you are on income support.
We managed as my DH works. Again the number of people friends and treating Drs/nurses who are surprised DH not come with me to hold my hand, he needs to work to keep us afloat.
I've also had to argue re not counting my disability related absence at work.

We don't do anything, we can't. We get fucked from all sides and a lot of us live in poverty because of it.

I'm 30 with arthritis in both knees and it's spreading to other joints such as my hands.

I have to keep working as there is no way we would survive financially.

I cope by waking 1/2 earlier than I need to taking 2 zapain and struggling through.

It sucks and tbh if it wasn't for my dh and DC I really don't see the point of living in this pain.

It's a massive concern, for the future that may be on the horizon for us.

DH has Ankylosing Spondylitis, which has got progressively worse over the last year. He has always been the main earner, we have 3DCs (1 with SEN). I work p/t but for a fraction of his earnings.
His employer was understanding and allowed him a later start and later finish, because in the morning he's like a stone man, he can't walk or move without being in severe pain for the first hour of waking.
But with the amount of medication and strong pain relief he is now on, he's already had to stop certain tasks due to opiate painkillers (for their insurance purposes), and he'll be unlikely to manage his job at all if it gets any worse.

Now it's looking likely we may have to totally switch roles and responsibilities, take a huge pay drop and work from there (no pun intended).

We live in an area of the country with high unemployment levels, and high amounts of people claiming sickness benefits.

He's concerned that if we have to swap over in the future and need to apply for any help, that he'll either be rejected outright, or be labelled that he's "putting it on".

It makes us scared for the future, not only because of the seemingly black and white criteria, that you're either profoundly disabled or totally fine, but also the casual disablist attitude that's reared its ugly head, especially in recent years.

My own best friend said, "Isn't it convenient, the government start funding mobility scooters, and all of a sudden, everyone is disabled"

It's difficult enough to have an unseen condition taken seriously, without the general air of scepticism from people who really should know better.

once I get high pip for mental health, and low for spinal and joint problems Yet apparently i am able to work so no it doesn't work like that.

I think long term we have to move to a citizen's income and get away from means-tested, needs-based, targeted benefits. They are too easily politicised and used against the weak (who most need them and most qualify!).

"Most need" targeting of benefits and social programmes seems fairest in principle but in practice turns those programmes into political weapons, trained on the poor. The slow remodelling of the NHS into this kind of targeted system will do to the health service what it did to council housing.

I just don't know how to sell it to a public addicted to scapegoating and division!

I like the idea of a citizens income.

That and like albadross, more employers who are flexible, don't apply the same sickness time off for those with disabilities, and people paid for their work, not being in the office.

I'm surprised the Tories don't go for it more actually (some do!), as one clear probable consequence of a citizen's income would be the radical casualisation of labour, as people could pick up work whenever without the bottom line financial need for minimum hours/income contracts.

It's a double edged sword in that way. But I think generally a positive for some marginalised workforces like disabled people with fluctuating conditions and parents with young children.

A one amount for everyone citizens income automatically discriminates against disabled people because the cost of living is higher if you are disabled. Benefits are needs based for a reason.

Sorry, to be clear here. I make my observations equipped with a lived experience of the costs of disability. My husband is totally paralysed from the neck down. I still think that a citizens income would in the long run work better and be fairer in practice. What seems right in principle can have some cobra effects in practice.

Rinoachicken and Kali - I'm just curious,I still don't understand how it is possible - I do believe you, and am encouraged to know it's possible, I just can't get my head around how it works in practice! I claim PIP for mental health myself, but the reasons I claim it are the same reasons I can't cope with employment atm. It's not like being in a wheelchair, where as long as you're not expected to walk or stand you can do your job. Because your mind, concentration, motivation, ability to interact at any given moment, are usually required in the workplace.

The only thing I can possibly think of to explain it is - is it like ASD where people can "cope" for short bursts but at the expense of something later on? So you could get through a day at work, providing someone else took over once you arrive home and collapse in a heap?

I have no idea how its possible.
A week after i got my pip appeal i was suddenly called in for an esa interview. Nothing has changed ( actually things have got a lot worse health wise) but no apparently i am
Fit for work.
The fact i have days when i can't get out of bed, have to go to three different hospitals every other month and see my gp every month ( if not more) means nothing

It's also harder to claim Working Tax Credit Disability Element for mental health than physical health, it seems. Because the criteria for a physical condition includes "You cannot normally sustain an 8 hour working day or a 5 day working week due to a medical condition or intermittent or continuous severe pain". This would seem to cover most physical conditions not covered elsewhere. But there is no equivalent for mental health; only very specific descriptors.

Thse are:

• You have a mental illness for which you receive regular treatment under the supervision of a medically qualified person.

or

• Due to mental disability you are often confused or forgetful.

or

• Due to mental disability you strike people or damage property or are unable to form normal social relationships.

The last two would be unlikely to apply if you were able to work. The first one excludes anyone who's seen as capable enough to discharge by increasingly underfunded MH services...
There should be a MH descriptor like the physical one - "You cannot normally sustain an 8 hour working day or a 5 day working week due to a mental health condition".

Sorry for banging on about the minutiae but this really bothers me; trying to work out how the hell I'm going to get back to work!

Can I just ask that people consider that being "in a wheelchair" does not always actually just mean "sitting down".

Many people who use wheelchairs are cognitively impaired, either through the many neurological conditions with secondary paralysis, and/or the heavy medications they are prescribed to manage them. You can be permanently in a wheelchair and still have a fluctuating ability to work.

I do sincerely appreciate your challenges. In some ways it has been easier to manage since DH became completely gold star 100% disabled (he has a degenerative condition so we've gone through every stage from migraines to paralysis over 15y), but some of the things that are confidently described as no problem once you're "severely disabled" are actually still totally a problem, because actually they don't want to help anyone. DH does not qualify for ESA. He still regularly is lectured by strangers on his laziness and worthlessness. The NHS is still often unconvinced of his need for healthcare. Don't accept the premise, is what I'm saying.

Anyway, carry on. Sorry.