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.

Newkid, when my sister was finally diagnosed her fingers had warped, she could barely walk and her hands were so weak she couldnt make a drink or even hold a towell. She takes methotrexate, its a heavy duty drug and can have bad side effects, however, it has made her condition much, much better. It's not a wonder drug but its made her life far more comfortable and I have read newer drugs are being explored all the time.
She finds pressure gloves (from the hospital) have helped too.
The immunity is a big worry, though so far its not been too bad. You shoukd find your GP will usually see you straight away and precribe antibiotics for colds, etc as they take this very seriously.
I hope you feel better once your on the right medication.

Thanks bertsdinner, I am currently on sulfasalazine but it is affecting my platelets so I can't up the dose at the moment. It's still early days though.
Useful to know about the pressure gloves as I have been wondering about getting them so will do that.

Glad you started this thread OP, it's something that really worries me. I currently claim ESA (sickness benefit) and PIP for mental health issues.

Thing is, I can foresee a point when I can manage day-to-day and appear ready for work and certainly not "ill enough" for PIP... but take away the benefits and add the stress of a full time job (part time is not enough to live on) and I'll relapse.

The benefits system plays into this, badly. It's got a lot more all-or-nothing since the bastards Tories took power. It's not helpful for my mental health to have to repeatedly demonstate how incapable I am (when I try to think positive normally!), and to live in fear of losing everything. Being under 35, if I didn't get PIP, I'd only be allowed enough housing benefit to rent a room in a shared house. But with the PIP I get not only the PIP money, but a top-up to my housing benefit so I can live in a self-contained flat, plus a premium on my ESA. I don't actually need the PIP money itself, but the Housing Benefit and ESA premiums are necessary. (FWIW I save the extra so when the worst happens I have a bit of a cushion, have also spent some on education).

Being able to work part-time with some kind of state top-up that acknowledges disability/illness seems impossible now. I read some time ago that there is apparently no equivalent of Working Tax Credit Disability Element under the new benefits system (Universal Credit). The great things about the Disability Element previously was that it kicked in at 16hrs work, so could help someone return to work even if they could only manage part time. (I have claimed it myself - under the previous government my benefit entitlement on returning to work part-time was actually slightly higher than if I was unemployed claiming JSA+HB!) With the present and future benefits system, once you're able to work your basic entitlement (ie. the minimum the government stipulates you need to survive) goes right down to basic JSA + Housing Benefit. This means that any top-up benefits, if working part-time, will only increase one's income to around breadline level.

And this is beofre we get on the fact that MH services are so decimated that I'm not ill enough/don't have the right kind of illness to qualify for treatment. Plus the increase in people remaining on sickness/disability benefits longterm, and moving from JSA to ESA, as JSA conditions get ever harsher... Oh and crappy employment conditions that mean people who may once have managed now find workplaces too demanding and relapse.

Mewling - it is now unlawful for an employer to ask you about your health before making an offer. In your situation, I'd wait until I was asked (offer stage) before disclosing a condition, at which point if reasonable adjustments are necessary these can be considered (employers decision if they are reasonable or not).

That way you will know whether you've got the job based on merit, and any discussions regarding your condition are separate. No employer will take on the risk of withdrawing an offer unless it's obvious that adjustments can't be accomodated, not unless they want to take on a big risk of a claim.

Ps. Regarding the benefits/fraud issue. I'm honest enough that I wrote to end a previous claim (DLA before it changed to PIP) because I felt I no longer fitted the conditions for claiming. And yet, due to the rules around savings limit, and my instinct to save hard for an uncertain future, I find myself wondering about buying expensive jewellry, or perhaps cases of fine wine, that I could sell later on... (I haven't actually done this and I'm sure it's against the rules! What an AIBU!)

I've worked extensively in the area of sickness monitoring and dismissals, and I have an "invisible disability" myself.
It's basically down to the employer. There's lots of very simple adjustments which could be made but some employers refuse to make them because they don't see why you should get the "luxury" of a late start/work from home. Employers never believe you're sick unless it's something like cancer which is easily understood. Chronic fatigue- no chance, although I was told by one manager that I wasn't disabled but I was mentally unwell (?) when I said I had CFS. Most employers these days seem to expect that you will work much more than your standard hours. Working my standard hours is enough of a struggle without being expected to work late.
Sick peope are easier to pick on, they don't have much energy to fight back.

Same's true for everything though. There's always a gap between "so bad they need extra help" and "not needing extra help".

Personally I think I'd rather more the line closer towards the "easy life without help" and risk having a few people trying it on than have the potential of people being stuck between the two and not able to access help.

Issue is though that people get far more worked up about one person they deem to be scrounging than a whole set of people who can't manage to inch and pinch to make ends meet however they try.

I'm in limbo land too. Too ill to work or do anything much but not ill enough to get any help. Without DH I don't know what I would do.

I have a condition similar to rhumatoid arthritis. It's very varied and I can be fine one day and bad the next. I really wanted a blue badge for my bad days but because I can be fine I would never get one (saying that on bad days I can't walk even from a car to a shop so maybe it would be pointless anyway)

I don`t think there is a safety net for anyone with disabilities. My son has cerebral palsy and learning disabilities. No one helps us but family. We may even lose some of his benefits due to a visit by an assessor who asked my son when his learning disability started ??? Plus she never asked him to walk....he has difficulty walking! So I wait with no confidence in the system for our notification!

In my case, join the public sector (like *detectivebeckett) so that I would have the right to work part time and work flexibly, and on paper at least, good support to fight for Access to Work support when I needed it (which was only after some years). It worked fairly well until the last couple years when staffing cuts make everyone stressed and grouchy, and policies to prevent fraud became so over-stringent I couldn't get what I needed (over a year to get a replacement £50 item, for example).

Luckily the other half of my plan, to find a fairly high-earning person to have a relationship with, has worked for the last 20 years, so for example we could afford a cleaner when I first couldn't do that at all, and have kept that up. And could pay for ds to be in nursery when on maternity leave, and possibly most importantly don't have to deal with housing benefit etc.

And thanks to a friend who has similar issues and is a disability expert, I managed to successfully claim PIP (after nearly 2 years...) which makes a huge difference. Though doubt I could hold down a full time job for long, so now I'm jobhunting and aware that everyone says the only way to get a good part-time job is to go full time and negotiate down once you've proved you're good, but not sure I can prove I'm good without being 3 days/week!

I do policy/briefing/analysis and report-writing type work so there shouldn't be much problem working from home, flexible hours or a few days, but in practice it's all down to individual managers. You'd think budget cuts would mean part-time workers would be appreciated but few managers do. Some great ones, though.

I call it No Man's Land, that space between being able and being disabled. I'm too disabled for most types of work but not disabled enough for disability benefits.

I was bullied out of my last job and I'm looking for another one. I'm perfectly happy to work and I'd rather work but I worry about who will employ me when there are other people, healthy people queuing up for the same jobs

star i was also bullied out of my job.
It's so funny that i'm entitled to high pip yet just been kicked off of esa

I'm in the same boat in that I'm not technically classed as "disabled" but my general health is pretty shit; degenerative disc disease and extreme fatigue all the time after a head injury leading to a brain haemorrhage a couple of years ago. I was pushed out of my last job because of my back, and am now doing a home based call centre job, which on paper is perfect but I bloody hate it and it's depressing the life out of me, so I'm back applying for jobs which I have no idea whether I will physically be able to do. I'm currently working on average a 40 hour week, and I'm drained, grumpy and tearful all the time so struggling to see how I will cope with this amount of hours out of the house, yet I'm a single parent and need to work.

We get turned down for DLA and are told we're lucky to be SAHM. When our DH loses his job we lose our house and just get on with being hauled into the dole office alongside him and get looked down on, and we take our Prozac and pray that the children do well enough at the shitty sink comprehensive school to be better off in their lives

I really feel for your friend, I also have RA though mine mostly affects my knees. It is not consistent at all and though I am glad to not constantly be in pain when I am going through a flare up I cant walk up or down the stairs and find to hard to walk for long and even drive. I am a SAHM at the moment and use my pushchair as a crutch, some days I cant walk along without it.
I am not eligible for any sort of disability support and though I am lucky that I dont need any extra financial support it would be useful to be able to use a blue badge during flare ups etc but unfortunately I understand it would be difficult to implement because I think a lot of people would abuse it.
I also find that because I am sometimes "fine" a lot of people around me underestimate how debilitating it can be. I had comments recently from an acquaintance about how she thought I had "bad knees" umm yes I do but FYI I had steroid injections in them both a couple of weeks ago so am currently going througg a relatively pain free period.
Grrr.. drives me crazy feeling like you have to explain yourself to people.
Ooops sorry for the essay, Ive gone off on a rant

I'm in this boat too. Have a chronic, fluctuating, invisible disability. I have probably been quite fortunate and have received out of work disability benefits for a number of years. However I've recently been reassessed and put in the WRAG for ESA. As I am on contribution based, I'm only due to get this for 1 year, then nothing despite them knowing I am unfit for work. I'd love to work. No one will employ me though, I can't guarantee I'd be there every time.

It sucks. I hate the assessments. I look fine, although when I'm having a bad day (and I ensure assessment days are bad days) you can tell as people frequently tell me I look tired and ask me if I'm ok. Even using a stick and struggling to walk isn't enough for assessments though. Total farce tbh.

Bump

PIP claimant here due to multiple fluctuating conditions. I also work but have a horrendous sickness rate and am forever being sent to OH due to exceeding sickness levels. How Ive kept my job I don't know but I assume it's because my boss sees me as a good investment when I am in. However I am also my households main earner so my stress levels are high and this feeds into my sickness levels and so I'm in a rotten cycle. I'm not sure what the government can do to help us caught in the middle that they aren't already

We are covered by the dda (illness lasting more than 6 months)
We can claim PIP
We can use access to work
We can, in the main, work but need flexible employers as our only concession which is slowly happening.

I get PIP for mental health. I currently work full time. I was forced to leave my previous highly paid job because I couldn't cope with the pressure and stress which excerpted my mental illness and had an awful sickness record as a result.

I now have a minimum wage job much less pressure and stress but I enjoy it immensely and I'm able to cope much better and not had any time off sick so far.

Even so, it takes everything out of me and I am emotionally totally drained by the time I get home and spend most of my weekend in bed exhausted.

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.

Was that called the Access to Work fund or similar?

Should we be lobbying for its reinstatement? Maybe not giving it full welly yet, but in the run up to the next GE?

I'm a T1 diabetic and if I'm ill I just have to go into work anyway as my mortgage doesn't get paid otherwise. SSP works out about £70 a week (after your initial unpaid three days off) and I put £160 a week into our joint account. My partner would undoubtedly pay my share without question till I was better but that's not something I'd ever take lightly or consider unless things were really bad. They're not always bad but they're not usually great either. When you inject 6 x a day and test 8 x a day and work weird shifts you often feel pretty worn down. Which means I catch every cold etc. Then inevitably my blood sugars rise and I feel rubbish constantly. It is considered a disability in the workplace, however when I applied for Disabled Students Allowance for additional help with travel costs so I could rest and study more (I had a three hour round commute everyday which I could have reduced by half using the train instead of the bus) they said it didn't affect my daily life enough to be considered. I'd like to see them deal with it then say it doesn't affect your daily life at all.

so which is it? Have you been a SaHM or have you been seeking work?

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

Where did she say she'd been seeking work cocktail?

If you're so ignorant about autism that you can't imagine the ways in which being autonomous at home might be more manageable than being employed in a workplace, you should probably do some basic reading before grilling someone with autism about their personal challenges in that obnoxious sceptical tone.