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.

I've been worrying about this a lot lately... Currently off work with depression, but I can function in daily life (washing, dressing, feeding myself etc) so I'm not seem as particularly in need of intervention etc.

Currently my employer has decent policies in place and I have many years employment with them which helps. But I do worry about what happens when they run out if I can't return to work

Rainbowshine - and those contracts help a bit, but the financial instability can be very hard to cope with, especially if the job isn't well paid.

I know what you mean op.

My DM is in receipt of PIP for arthritis and fibromyalgia.

Some days she can't get out of bed but she does have good days where, with a bit of forethought and planning, she can function well and would be able to work.

In some ways she is fortunate enough that she is able to get PIP, but we had to bloody fight for it - our mp was involved at one stage. There is no way she could hold down a job.

She would be an ideal person for a zero hours contract - but they're not used like that in real life, are they? If a boss could ring up and say ' you ok to work today?' And she could say yes or no, that would be ideal, but in my experience the zero hour contracts aren't being used like that.

She's also petrified that if by some miracle she could find a job like that, she would be painted as a 'benefit fraudster'...despite the various mobility aids and all the adaptions we've had to make to the house so she can have a reasonable standard of living, people think that seeing her on her best days is representative of all the time.

A job would be great for her too as her disability has been very isolating....even if she could do two or three short days a month on a hotel reception, I think it would give her a sense of purpose.

Ayeamok, people with mild (or any) disability are protected in employment. I have the task of terminating the employment for the long term sick in my role, if they are disabled we have to show we have considered 'reasonable adjustments' to retain them.

Often there is no reasonable adjustment than can be made, particularly where the job is very physical, and in that case we need to take them off the payroll so someone else can be recruited. It's unfortunate, but we wouldn't be able to survive as a business if we had to retain people with disabilities where they could not do the job even when adjustments are considered.

Arthritis here and I am scared for the future. I work full time and have a young ds, but have had my blue badge and bus pass taken away due to austerity. It sucks and is hard now, but if and when I go downhill in the future I get really scared about hope I'll cope. The system doesn't ever recognise those in the middle. I once had an OT tell me that if I gave up work I would be fine and could access benefits, but because I haul myself into a job come what may then I get no help.

Having said that the NHS are currently doing wonders with me so here's hoping.

It's scary. I am totally dependent on DH for every penny and every little bit of help. All I have had from health/social services is a step to get into the bath, 2 grab rails, a thing to put my socks on (which is useless) and a long handled shoehorn.
The cynic inside me reckons that the government is removing our payments and mobility cars so we die off quicker and stop costing the country money.

YANBU

There is a widening gap in the safety net which used to catch people with chronic but variable conditions.

My son gets DLA as he is autistic with ADHD and a few other co-morbid issues. I dread what happens when he has to claim PIP as he wont and doesn't see himself as disabled. In a way he isn't, he can walk unaided for example and talk a good talk. However he still struggles with some items of dressing (socks are a nightmare), bathing as he needs constant reminding to carry out washing and tooth brushing. He struggles with most practical tasks which other children his age take for granted.

It's another two years until he has to apply for PIP and I hope in that time the tasks he still finds difficult might become more manageable for him. I don't know as yet if he will ever manage to live independently and manage money because he has little concept of budgeting even though I discuss this with him and try to support him.

In the eyes of a PIP assessor though he can walk, talk (and his vocabulary is well above average) but his receptive language skills are well below what they should be for his age.

At this point I will HAVE to go back to work and I hope by that point he will be fairly independent and able to travel. Currently he cannot cope though with any of those things,

Well in Denmark someone who was ok most of the time but had bad spells would probably be entitled to a paragraph 56. Under danish law the emploer usually pays the first months sick pay, and after that the state does. But with a 56 agreement the state would pay from day one. So keepinv this person on the payroll wouldnt cost them anything, although they would need to find someone else to do the work.

Other options are flex jobs for as little as 40mins per week, the employer pays the 40 minutes, the state tops up the other 36hrs and 20 mimutes.

Or revalidering where you go back to college to retrain and get a really decent amount to live on, and get books paid for.

Or early retirement.

I have chronic fatigue caused by an autoimmune disease. My symptoms fluctuate and during bad times I am unable to work full time. When I tried to work full time I was taking increasing amounts of time off sick as my symptoms worsened due to the stress.

My solution has been to find part-time work but it has been very difficult to find work and it has pretty much dead ended my career. For many years I worked well below my capabilities as most part time work is unskilled. Part time work is also low paid. I have been extremely fortunate to find a job that pays enough for me to live on.

My colleagues seem to think I work part time because I am lazy

I had a problem for four and a half years when I couldn't speak at all ... After a month of waiting for it to come back - I just adapted my work to all be email based and carried on - as trying to find a job for someone who couldn't speak wasn't easy at all ! Thankfully it's come back now !!! [speech that is ]

I'm glad you have started this thread op. Being in this situation makes you feel very powerless and it helps to know you are not alone.

I have a neurological illness for which I've been on steroids for 4 years. I've gained over five stone and feel constantly ill and tired. I've started a new drug which may help me get off steroids, but I need it to be given by infusion in hospital every two months.

Who is going to employ someone who will take at least one day off every two months? Especially when that person looks fat and lazy. I had hoped to do a post grad and teach English but I can't see me ever getting a job if I disclose my medical history.

I thought I had come to terms with this, I'm a sahm and all children will be school aged this year, so I was looking at alternative careers where I could be self employed. But dh has just lost his job, and we have 2 months of savings to live on, after which we're screwed. I just wish I could be well enough to work, because we would have some security. But we don't, and it's my fault because I'm sick.

I am an autistic adult and I get DLA and ESA at the moment, I haven't been able to work for about 16 years, but I've been caring for my dc all that time as well. I do worry about the transition to PIP or not being able to get ESA when a reassessment is due, but I have a supportive psychiatrist who has backed up all my applications with reports and letters.

If I end up losing my sickness benefits in the future we'd be able to manage on just DH's salary but I'd feel less independent as a result, although I contribute by being a sahm. A few other friends with varying disabilities have ended up being sahms like me and that's another option for those unable to work I suppose.

Redexpat I'm interested how long would someone in Denmark in that position stay on the payroll? Indefinitely?

Here, we can keep someone on the payroll for as long as we wish to after SSP has ended (28 weeks) but they would not get any money from the employer though so would have to claim benefits. But we need to remove them from the books so to speak as otherwise we would not be able to recruit to the role permanently, which would make recruitment and retention of other staff difficult.

The employee on sick would always have a right to that role, which doesn't make sense if they cannot do it even with adjustments considered. The company I work for usually works to a six month timeframe for ill health dismissals as that's when SSP ends, which is common, but there's no hard and fast rule.

I have x2 dc with high functioning ASD, and like you, StillMedusa, cannot foresee any solution other than living forever. My youngest is currently finishing university which they have completed due to an overwhelming amount of support with both academic organisation (dc is incredibly bright) and everyday living tasks (they may not remember to wash, eat or sleep unless prompted). They have however survived! Even if their diet has entirely comprising junk food, and I have spent most of the past 3 years on Skype :) I have not been able to claim any financial help for them despite their dual diagnosis of ASD and ADHD.

The cynic inside me reckons that the government is removing our payments and mobility cars so we die off quicker and stop costing the country money. I have a theory about toxic drugs too. Tin hat time

Tabsicle if your friend is signing on then she can ask the JCP to refer her to the work choice programme and they will help her find work as it is a programme that specialises in finding employment for people with disabilities.

In regards to your previous comment about money if you are disabled you can qualify for working tax credits at 16 hours not 30.

Yes Tabsickle I agree, the flexibility has pros and cons. If you need a constant income I don't know what the best thing is. Employers do try (the good ones) but as a PP said it's difficult to have a sickness policy and have to justify treating people differently and not breach confidentiality etc. If I had the answer I'd bottle it and sell it! I do know some people simply temp through an agency and disguise the times they are unwell with reasons like I'm not available this week, so that they don't get penalised. It still doesn't help the weeks they don't get paid though.

My sister probably falls into this category, she has psoriatic arthritis, which is very similar to rheumatoid. It is largely controlled by drugs and she does not receive any help and works full time.
Work is her main problem as they cut her no slack whatsoever. Her joints are painful if she sits in a standard chair for so long, it took 10 months of argueing to get an extra 5 mins break so she can walk around and a split keyboard which is easier on her hands. They have been obstructive, dismissive and unsympathetic. The union seemed powerless.
The worst is winter colds. She takes a drug which decreases the immune system (as the immune system is attacking the soft tissues, causing her condition), so a cold can make her really ill. She lives in fear of catching a cold, having little immunity, and having to take time off.
She manages by just getting on with it, going into work with painful joints during a flare up, but things would be so much easier with just a tiny bit of consideration from her employer. We get that they are a business, but she's not asking for much.
People are supposed to be protected at work, but we haven't seen this. They have grudgingly done the bare minimum of "reasonable adjustment", but my sister has had to fight for even that.

Coffee you should be allowed time off for treatment, it's in the equality act.

I work in the civil service and they seem one of the best places to work if you have a disability, although with each year they seem less supportive. I'm scraping by at the moment.

When my disability was less severe than it is now, I claimed DLA and worked very part time. When I couldn't do that anymore I wasn't entitled to Incapacity Benefit, as it was then, because I hadn't paid enough NI in the qualifying years. Thankfully, DH works and we could take the hit.

Now I'm more severely disabled and there's absolutely no way I can work. I was transferred over to PIP at the beginning of this year.

I too suffer with psoriatic arthritis and I am only 23. Currently it affects most of my joints and I struggle to stay awake all day. I only work part time the moment but I am lucky to be paid well for this, as there is no way I can hold down a full time job. Unfortunately, this job won't last forever!
I am hopeful the symptoms will become more manageable once I find the right drug but most of these will affect my immune system and mean that I will pick up normal illnesses easier than other people.
I'm not sure what the answer is for people with fluctuating conditions but its a tough situation to be in

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.

I am quite often thankful that DH's disability is severe (and measurable!!). Which is quite terrible really.

For all the people on this thread - if you could have a dream job with irregular hours to suit disability, what would you like to do? What are you qualified to do?

Yes bert employers are not always helpful, even when they are supposed to be.

When I became ill and my GP recommended reducing my working hours my employer was a complete bastard and did everything they could to get rid of me. Yes, I could have gone through a legal battle to force them to accommodate me but in the end I didn't want to stay somewhere that had been so horrible to me when I was unwell.

But then getting a job once diagnosed with a health condition has been very hard. I had no job offers at all when I was first diagnosed and was open about my condition. Later I wised up and didn't mention it unless directly asked.

Yanbu at all. I live with disabilities that were apparently not severe enough to warrant me being off work.
Even though the reason i was off work in the first place was because i was ill so much
Though one of my disabilities isn't took seriously apparently