Tuesday, October 16, 2012

Fluctuating and Flexible Work, A Consultation

Those of you who've been keeping up with campaigner's conference antics will have noticed the announcement by the new Disability Minister Esther McVey of the intention to look into flexible work options for those with fluctuating conditions in the hope of starting a pilot project in the New Year. This also fits with much of what Labour want to look at in their policy review so will continue to be on a non partisan basis feeding in to both parties. Politicians across the board have betrayed sick and disabled people and I completely understand the mistrust, fear and reluctance to engage felt by our community as we have been ignored and marginalised over recent years.

But, being non partisan means we have to talk to and engage with people we would otherwise prefer not to if we are ever to make any improvements. Now, albeit in an extremely limited way some politicians are doing as we have asked, listening to us, and it is our responsibility to ensure they hear what we are saying and act on it in a constructive manner with the best interests of sick and disabled people put at the heart of any policy affecting us. If you like, it's the 'with us' bit implied in 'nothing about us without us'

So, over the next few months we'll be looking into the potential work options for people with fluctuating conditions, those who do not fit comfortably within a traditional working model, or who feel that for all its positives the social model is not entirely representative of our needs. This is absolutely not about removing people from reliance upon social security, it is intended to look at all the different ways we might be able to do some work, perhaps only a few hours a year whilst still having the support we need from welfare and social care to live independent, self directed lives.

Below is a post copied from Sue Marsh's Work Consultation blog with some suggestions of questions to think about, followed by the Disability's not Working post. If you could leave comments below this post rather than on twitter or facebook that would be very much appreciated as they'll be easier to collate. There is no need for any personal or identifying information, you can comment under an anonymous name, its your ideas we're interested in, whether you want to answer the suggested questions or put in your own is absolutely fine. I've taken off comment moderation to make it easier for people to leave their comments but if it becomes a problem with spam I'll unfortunately have to put it back on. Thanks and really look forward to hearing what you all think,

Work Consultation Blog

As many of you may remember, I ran a consultation on this blog some time ago, asking about work with long term fluctuating conditions or disability. It received over 250 responses.

Most people said they would like to "work" but that they either could not possibly now hope to work at all or that "work" as understood in our society simply does not suit or accommodate people with mental or physical illness.

However, five ideas came up time and time again :

1) Working from home - In 2012, many commented that it is ridiculous that businesses don't do more to allow people with illnesses or disabilities to work from home. With email, Skype and video conferencing, intranets and disability aids, it is perfectly possibly - indeed cheaper for many businesses - to facilitate home working.

However, the concept of "part time" or "full time" work as understood by most businesses does not fit with long term, unpredictable conditions. Any work would need to be utterly flexible, allowing the employee to dip in and out as their conditions require. Some might work well very early in the morning but be useless by midday. Some might be able to work for an hour or two here and there. Some need work that they can do at night when symptoms make sleep impossible. Any work would need to be utterly flexible over a 24 hour period.

It was felt that many had great experience and expertise from a lifetime of work that was now going to waste.

Employers were as much a barrier to work as the conditions that make work so difficult. Much more had to be done to include businesses in any conversation about taking on sick or disabled employees.

A "Work Bank" allowing businesses to upload overflow work from peak times (ie data entry, paralegal, accountancy, design, etc) was suggested. Business could plan for busier times, and those looking for flexible work could log on, accept certain hours or chunks of work and "bank" hours towards an annual work goal.

2) Micro Businesses - Many felt that they had developed new skills since becoming chronically ill. Hobbies had become slightly more, but the benefit system simply didn't allow them to develop these into viable businesses. As soon as they started to earn any small income from these talents, they found themselves unable to develop them as they simply weren't confident enough to lose all benefits.

Many suggested a kind of small business co-operative, where those living with long term conditions wanting to develop small businesses could come together in an area and support one another. Some might be better able to take product to market, some might have great marketing skills, yet others might be creative but unable to physically participate.

A combination of small micro-loans, Access to Work, networking with others in the same position, business support and flexibility within the benefit system might allow these businesses to flourish. Might. But crucially, there needs to be a totally new approach to benefits and work that allowed space and accepts that those with significant barriers to work need a much less punitive benefit system with much less draconian marginal tax rates and sanctions.

3) Education and training - Often, when someone becomes chronically ill or their impairment means that their current job is no longer viable, they are simply thrown on the scrapheap. Every study shows that once someone with an illness or disability is excluded from the job market, it is many times harder to re-enter.

A real commitment to find other suitable work within an existing company, supported by Access to Work, re-training or further education where appropriate could mean that someone never becomes excluded in the first place. This should be a partnership between the person with barriers to work, employers and government. All too often it has been a lonely path between a supportive employer and a willing worker, but the business simply cannot carry these costs alone. A little early intervention from Government could save years of benefit payments in the future.

4) "Falling off a cliff" - For decades our benefit system has become more and more punitive with tougher sanctions and limitations. The more dependent on social security someone is, the more impossible it becomes to consider any kind of paid work. Earning disregards (the amount you are allowed to earn before losing huge chunks of support) are ludicrous - often as little as £20 a week. This, sadly, is unlikely to improve significantly under Universal Credit.

Successive governments were seduced by the idea that those with long term illnesses simply needed to try harder, yet at every turn, politicians created their own barriers to work within the very system supposed to enable and encourage.

If someone stands to lose £6,000 a year in benefits by working, they need to know that they can earn at least that amount - reliably -before they could have the confidence to "go it alone". If someone will lose £10,000 or even more, yet could only ever reasonably expect or hope to earn a few thousand, many are excluded from even trying.

Politicians must accept that :

A) Some will simply never be able to "work" again at all.

B) Some will never be able to work again in the way society expects.

C) Some will always be excluded from the workplace despite a willingness - even eagerness to work.

ALL work should be valued. Anyone with a significant impairment should get extra support. If they have a diagnosis that means they will always face difficulties sustaining consistent work or face barriers to working, any work they feel they can do should be supported.

If someone can only ever manage a few hours from home, or can only manage to volunteer for a few hours here and there, that effort should be rewarded too. If we truly want a "good society" or a "big society" or "one nation" then we must value all contribution.

Politicians should consider a "volunteer credit" - available to those discussed above, carers, parents who support their children's school, or any other volunteer who is for whatever reason unable to "work" traditionally. The credit could boost final pension levels.

5) Despite all of the above, many with long term fluctuating conditions asked what on earth they were supposed to do during very bad times. All of the above suggestions meant that there would be times when they were simply unable to "work" and would be left high and dry with no salary. The "rollercoaster" effect had led many to give up on the idea of work at all. One minute self sufficient with some salary, the next plunged into poverty and fear, faced with a welfare system almost impossible to re-enter, the stress of re-applications, tribunals, appeals. Ironically, the more sanction we have developed, the less likely those with long term illnesses are to feel they could even attempt to work.

Those with long term conditions that will always face a significant barrier to work should see some of the tax they pay go towards a "lifetime fund" - heavily subsidised by the employer and Government (just as a pension is) that they can dip in and out of when illness makes it impossible to work. It might go back to the employer to help them cover long periods of illness. It might provide a small extra income during very difficult times. It might pay for adjustments when they become necessary. For the relatively small cost to the employee, business and government, it would be vastly cheaper over the long term in wasted benefit payments and recruitment or lost work hours.

Business have been largely absent from these discussions for too long. However, there appears to be a real appetite to change this, just a lack of suggestions on how. Tax incentives could encourage business to take on more people who suffer from long term conditions. Targets for employing a certain % of long term ill or disabled people are used effectively in many other developed countries. Government effort could be channelled much more into supporting business to set up schemes such as those detailed above, or "cover" business against times when the worker simply cannot work, rather than decades of social security support.

So, with all of this in mind, could I ask you again, to leave your comments below? If you would like to answer the questions below, it might help to add a little structure, but if not, feel free to say as little or as much as you like and of course, make any further suggestions you have.

Would any of these suggestions help you?

What is your condition, How long have you had it for?

Do you have other suggestions that you think could work?

When did you last work?

What did you do?

How long did you work for?

Why did you have to stop working?

Would you like to work, however little?

Are you now totally unable to work?

Does the benefit system hold you back from working?

What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.

Many thanks.

UPDATE : Some have suggested that the list of questions at the end may make some reveal too much personal information. PLEASE don't feel pressured to reveal anything personal at all.

Disability's Not Working

Following up on my post about working with a long term illness or disability, I'm writing today to ask for your help.

I've devoted many months of energy to fighting the welfare bill but there is another fight I always believed we must fight.

The Great Employment Battle.

The stigma and sanctions and insults of the current welfare to work debate have made the very word "work" hold a certain terror. No more an aspiration or a dream, something we hoped for more than anything. Now, if you have a significant illness or disability, work is a threat, with the ultimate punishment of unlimited, unpaid labour.

I've read endless reports and policy papers discussing us and I find it hard to believe anyone with a fluctuating condition or complicated lifelong disability ever went anywhere near the processes. I see a bunch of zealous blue-sky-thinkers sitting around a table, designing a system with the worst of humanity in mind.

A lot of them don't seem to like us very much. They think we're "too stupid" (Field) "festering feckless stock" (Freud) I'm fairly sure Carol Black compared sickness and disability to a typhoid plague in a recent paper I read.

And because they don't like us very much, don't know who we are, don't live our lives, they do the only thing they know. They pick up a bigger stick to hit us with each time they get round that table.

I set out to shine a light on our lives and this is surely one of the most frustrating areas of living with a long term condition? It always was for me. I thought endlessly about it. How the benefit system was designed to keep me out of work. How no matter what I did, the sanctions of finding work were all so punitive, I could never dare try. The unpredictability of my attendance, the variability of my symptoms all meant sanctions just trapped me.

Why? Because all the schemes and policies were designed with the assumption that I could "work" like anybody else. I can't. Hence I can't work. The work is not flexible enough, attending an office reliably is too difficult, the business is given no protection from government for any extra costs they might incur by employing me. I don't mean for adjustments, I mean for extra time off or annualised hours contracts.

Businesses are neither incentivised or mandated to employ people with disabilities. No-one has ever had a sustained conversation with business about the benefits of employing people with long term conditions and disabilities, asked for their co-operation, built a coalition of companies prepared to make this a priority.

No-one has looked at our skills and asked how we might contribute to society - how we do contribute, every day - they have simply looked at the economy and asked why we are a drain on it.

And that's the key "When you design a system only to catch scroungers, it is the genuine claimants that suffer for the few. When you design a system to enable genuine claimants, it's easy to see who the scroungers are" (Kaliya Franklin)

Why can't we speak with our own voice on this? I think some will be sceptical, they will say that by entering this debate, we are conceding defeat. But that's only if you see the very nature of work as a battle.

If we reclaim the work debate, don't we have a unique chance to shape it? Don't we have a way of showing all these disdainful designers of our futures why and where they have got it all so very wrong?

We can research, we can look for interesting reports from other countries, we can think about our own barriers to work and design our own solutions. Whether or not anyone ever truly develops them in the full spirit we present them, they will be there, for the record. We will have had a chance to answer all those judgemental, ignorant voices. Not spoken for, not spoken to or at.

We can tell our stories, just as we have before. We can write passionately about our own attempts to work and how the system held us back and why. We can tell twitter and Facebook.

It's a brave thing to do. We've told our stories about benefits before and it was scary. By laying ourselves bare we knew we were taking risks. Telling our work stories in this climate holds a worse fear - that any evidence we have tried to work at all will remove our security - but that in itself is exactly why we have to tell them. Just the fact that we are frightened to, says everything anyone needs to know about how punitive and degrading the current system is.

If you want to join me with this, please, use the hashtag #DisabilitysNotWorking
Post on Facebook under the title "Disability's Not working"
Or write a Disability's Not Working blog or article.

Look for papers and research - the good and the bad. The more we know the more confidently we can challenge. Share anything you find or send it around a bit on Twitter and Facebook so that we all start to become as expert in sick and disabled people working or not working as we became over the Welfare Reform Bill 2010

But the last, most vital thing is to get the message through that some people will never "work" in the sense they mean at all. They will never be "economically active" or "sustainable" or "self-sufficient" or any of the other dogmatic, de-humanising labels they invent to coat the disability stick they hit us with.

But they will almost certainly "contribute" Some will spend 90 hours a week caring for an adult or child totally reliant on them for every basic human need. Some will write great novels from their beds or paint great art using their mouths. Some will philosophise and others will make beautiful music. Some will counsel, using their experience to help others through the incredibly difficult times long term illness inevitably bring.

Any system that recognises contribution must include all contribution. Reciprocity and Responsibility work both ways, whether a "Big Society" or a "Good Society" or "One Nation" they are simply empty words unless we find a way to value the many unseen, daily contributions that keep our country rich and safe, and better.

To politicians and media and think-tanks I say : If you tell the country we contribute nothing, that we are nothing, that we're worth nothing, can you blame them for believing it? Recognising all contribution tells the public that we really are "all in it together" and might just be a first step in showing the true value of our social security system, not just it's worth.


pseudodeviant said...

I often hear people ask why those with fluctuating conditions - especially with conditions that fluctuate over months rather than days & hours - is that they should take up temporary work. The biggest barrier to that (that I find) is that the amount of time required to claim benefits is so large that if you know you can only work for a couple of months before needing a couple of months off. You have the knowledge that for all you'll earn for two months after that time you may have to go three months without housing benefit, council tax benefit and full ESA - not to mention the dreaded ATOS assessment. During which time you won't only be unwell, but you'll have no income, little/no-savings and the stress of having to deal with the benefits agencies.

BenefitScroungingScum said...

Psuedodeviant: That's one of the biggest barriers - the idea of this is to try and design something that sits on top of that benefit entitlement so that continues without constant reapplications/assessments etc. Whether its possible to do so or not I guess we'll find out as we go along!

Anonymous said...

Many aeons ago, in the days of UB40s, I signed on as unemployed. I was in the Territorial Army and once a month, I took my payslip to the unemployment office and they adjusted my benefits accordingly. Why can't something that simple be done with ESA?

karen said...

Of course in the end it will be just
another stick,governments will say 'we have now made it possible for
everybody to work,so off your sick
bed and get to work',I worry about
people in my situation,I can no
longer think clearly for long enough
to blog let alone work,but the
powers that be will say that 'work
is now flexible off you go'.

Anonymous said...

All the above ideas sound great.Having been.unemployed for 6 years,due to.my.mental health problems,I have undertaken various hobbies that Iwould liketoturn into part-time work,but am too scared to,because if I made moee than £20/week from them,my benefits would be stopped.Doing a few hours here and there and not being penalised for it or accused of fraud would be a great solution.

Findlow said...

Briefly, from one suffering as Karen, above,body and brain addled and exhausted. I'll try:

Generally good suggestions from Sue with lots of flexible ideas, for those able to take them up.
Kaliya - ye perhaps we have to negotiate with the politicians (while holding noses) even though they have presided over the current nightmare. But Karen(above )is right in saying it could just give them license to say "we've consulted", like they did with DLA, then ignore us. So beware!
You asked for some personal stuff:

Last worked 1989. Last job Social Therapist in adolescent mental health unit. Already in severely declining health but tried to carry on. Eventually had to retire through ill health, ME ( not diagnosed for 5 previous years, during which I'd tried to keep exercising, working etc, but incresing muscle weakness, cognitive problems, immune problems). In past assessed by DWP doctors (not ATOS, the real former DWP ones). Now on nightmare "transfer" from IB. Getting iller through more stress.
No question of being able to work. Barely manage basic at home. Totally unpredictable condition. Couldn't live without supportive partner's constant help. My condition permanent, chronic, getting worse. Far from being "work-shy", it was the 5 years of trying to keep going before complete collapse that led to the permanence of my condition. So I massively resent the government "scrounger" rhetoric.
A big thank you to you and Sue for all the wonderful campaigning that you do.

Findlow said...

Sorry - this not quite on thread, but needs flagging up.

Tom Clark writes:
"This month, a consultation on abolishing the figures about how many people claim their benefit entitlements was closed. At a time when the government is embarked on a rash rewiring of the entire welfare system, it has decided it has better things to do than keep track of who does and doesn't get the cash they need"
More ways to "disappear" the disabled and poor? Contemptible.

Anonymous said...

Injured at work, left with 20% permanent disability. Worked for 20 years prior to injury. No work compensation as no one to blame, get Industrial Injury benefit. Company dumped me legally by relocating my job to the other end of the country for 'business reasons'. Now work part-time as software contractor from home on a piece-work basis. Client requires program, we agree price and delivery date, I work as and when I feel able, client pays on delivery. No code = no money. No risk to client. Helps that I have high level of skill, am working for clients I knew before injury and IT companies are used to outsourcing. Selling "english speaking disabled person working from home with 20 years experience" vs "indian contractor working from india with dodgy accent and 3 years experience" is not too bad. Job Centre told me I was unemployable but not incapacitated and should start my own business.

Chloe Emmott said...

The permitted work rules news to be more flexible, I work 10 he's a week mostly from home (my first job aged 28! Interrupted education, 2 years of nothing after uni etc etc) which fits into the rules, but if I want to work more hours or earn more ph I am fall into a gap of not earning enough to support myself and not working enough to qualify for tax credits. It makes me dubious to try working more on top of the health worries. It's such a solid cut off, atm if I earn about £1 or £2 more per week I'd loose my benefit. It seems a very sharp line before a big drop if you get my drift. Also as I have been claiming benefits since I was a child I am now on contribution to based esa due to the ni paid by me benefits. This leaves me ineligible for free eye tests, help with adult education courses etc or pretty much anything that offers a reduced rated for those on benefits as only income related esa is accepted as a qualifying benefit in most cases. Until I got my little job esa was my only income. Thankfully I have supportive parents who have helped me out financially at times but I worry many in the same situation don't have anyone they can borrow money from. The point is I shouldn't have to rely on the my pensioner parents in the 1st place! That's about all I can think of now but I'll probably be back with more later...

Mary said...

Two answers here.

First, from the self-employed trenches.

I have to report that help with self-employment is not (in my experience) set up to be accessible to disabled people. The Prince's Trust did their best with me but really we were making it up as we went along. Self-employment advice is all about being energetic and dynamic and driven and believing in your product/service! That doesn't mesh with a person who can only sit up for an hour at a time, has low self-confidence, and is driven only by the fear of and belief in the persecution inherent in the benefits system.

Other self-employment/work from home barriers include:

- for those in rented accommodation, particularly social housing, rules about whether you may run a business from your home at all.

- the possibility of having your council tax reassessed to include business rates (this also applies to employees working from home if their employer provides furniture or equipment for work purposes) and the impact this will have on household finances.

- having the wherewithal to not only do your paid work, but also to do the necessary administrative tasks eg tax returns, setup loan applications, ensuring adequate insurance, etc.

- safety issues surrounding having your address on the internet. As a business you have to give your contact details, if nothing else when you register your website domain. A PO Box costs £185/year plus VAT, and to have the contents of the box delivered to your home as many disabled home-workers would require costs £230/year plus VAT. Not small sums.

The last two there can be overcome - you can use an accountant to keep your books in order, some lawyers and accountants will apparently allow clients to use *their* business address for HMRC and domain registration - but not without a cost, and a person who can do, say, 10 hours work each month, would need to be charging an astronomical hourly rate to cover these costs.

Mary said...

Second, from my whole disabled/working life.

Work does not exist in a vacuum.

If you work at an employer's premises then they will expect you to arrive in a state of reasonable personal hygiene and appropriate dress. They will expect you to have taken care of your basic physical needs such as eating properly and taking prescribed medications.

If you can't do those things on your own, or you're not supported to do them, then you can't work.

An employer will not accept the proposed PIP definition of personal hygiene as being a wet flannel to the upper body only. Nor will they consider pyjamas, elasticated jogging bottoms, and loose shirts as acceptable attire.

On top of this, those with fatigue based conditions will never be able to devote all of their functional time and energy to work. We need time and energy to do grocery shopping, prepare meals, keep on top of the housework, dare I say have a family life, plus of course the endless paperwork for DLA/Social Services/Access to Work/whatever the next government policy to jerk us around a bit more happens to be...

Eight functional hours a day does not mean eight hours a day in which one can do paid work, especially if life's ten-minute tasks necessarily take one a full hour or more.

Anonymous said...

Hi Kaliya,

It seems you have already done an excellent job of covering most of the possibilities and pitfalls between your piece and the commenters.

I too have ME, which seems to be getting steadily worse so that I am now in bed most of the time, after many years of gradual decline. I'm in hospital at the mo, so on support level of ESA, but once I am discharged home, I will probably be declared capable of work and lose the benefit without losing the disease:-(

I'm **** scared of even leaving the building, so I don't see what work I could do unless it involved this slow, one handed notebook tapping!

However, it seems to me that there might be some scope for a more organised version of a LETS scheme, so that it might work as something of a flexible-work labour and training exchange, combined with a credits bank, that would also keep track of the hours each member put in.

I think there would need to be some central guiding hand to match work offers to members and to help upskill any that were being left out for whatever reason. Perhaps, in the first instance members would be rationed to the 20hr/week to minimise loss of benefits, and also give a chance to the less forceful members to catch up.

In an ideal Atos and persecution free world I would say that these local schemes should be managed by the existing job centres, but I think it will be a long time before anyone trusts them again. Possibly, they could be steered by say CVS, or by expansions of existing LETS.

I've no experience of involvement with the schemes myself, and am not even sure how I'd fit in (I've a reputation as a general 'Mr Fix-it' but I don't have the strength and dexterity to do that any more.), but I thought it might be something to mull over.

Anonymous said...

You're joking right?

Where are the jobs?

Who would employ people on 'fluctuating' terms?

What protection is there for 'fluctuating' workers?


There are so many good points made in your post and Sue's that I don't think I can add much more except a brief version of my story.

I have EDS but that wasn't diagnosed until 2011. I spent the previous 10 years battling to try and work, failing, being referred to various different consultants - the usual EDS problems. With chronic pain and fatigue I had to give up work in 2007 and went on Incapacity Benefit for five years (during which time I was declared 'fit for work' which I appealed and won).

Since being diagnosed things have improved because at least now I know what I'm dealing with. After a lot of thought and a spell doing 'permitted work' I finally came off incapacity benefit and went self employed as a research assistant earlier this year. I am part of a group of self-employed/freelancers trying to establish a co-operative for sharing projects.

BUT the only reason I've been able to do this is because I live rent free with my partner in his dad's house and my 'salary' when it comes in (which is irregular and unpredictable) is not what we rely on week to week. If I was single there is no way at all I could have considered going self employed because there would simply be far too many weeks when I don't earn anything because I'm not well enough to work. My only regular income is from Disabled Persons Working Tax credit and Return to Work Credit. Neither of which would be enough to cover the basics of running a home. The latter will finish when I have been 'working' for a year and my understanding is that the former will disappear under the Universal Credit changes making my finances even more precarious and variable.

I live in terror of having a major relapse in symptoms and having to return to the benefits system.

Anonymous said...

I m very concerned that if measures are introduced to ennable people with "fluctuating conditions" to work from home etc that this will mean ALL people with fluctuating conditions will be assessed as capable of working and abused and punished even moreif they cannot.

My fluctuating condition is a base line of can't do much to can't even get out of bed. This can change within 10 minutes. I can barely mangage the basics of day to day living even with help from a carer. The rest of the time I am alone. I can barely scrape through the day as it is, with luxuries like having a bath being a major task and often having to be dropped in favour of getting something to eat.

Any additional pressure to do some kind of work from home will just tip me over the edge. Quite apart from the fact I have no skills tha cold be used working from home. Being able to type a message on a blog is a long way from being computer literate or being able to type for hours.

I can see there are measures which could help some people, eg atists who could sell paintings online etc but I am very scared this collaboration will backfire on those of us who seem on the surface tobe capable but in reality cannot function beyond trying to just stay alive. That is MY full time job and at the moment with ATOS and changes to DLA is starting to look like an impossibility.

It seems this Brave New World has no place for people like me. If it is Work or Die, I have no choice but the latter. Please Kaliya, do not forget that some variable conditions only vary from bad to worse. There are no "good" days.

Anonymous said...

I'm rather concerned by what appears to be an acceptance of the 'terms of reference' re WORK IS GOOD - without any definition of what WORK is.

Many disabled people already work within the current system. So why can't disabled people, of their own free will, just apply for jobs or develop their own 'work' in the current market as and when they feel well and able? Many people are in and out of the job market.

I do not think that this idea has been thought through. As someone has said this is setting disabled people up to fail within a system that already discriminates and abuses.

The only other acceptable way for disabled people to be properly helped into work (sorry I have to laugh) would be for them to keep their benefits, not be penalised, to go to work and then, say on a yearly basis as anyone would complete a tax form, conmplete an income form and have adjustment made as relevant.

There seems little scope for a system to be introduced with so many variables that it would be impossible for it to be fair.

However, my overiding concern is that this gesture is highly problematic.

DavidG said...

The idea of working from home is a good one for some disabled people, but for those of us who had more specialised professions before disability interfered it doesn't really fly. I'm a specialised engineer, I can't really fit the flight control system from a Eurofighter (which I spent a decade working on) in my spare bedroom. Similarly other disabled people I'm aware of are physicists, or health care professionals, or whatever, the simple fact is that not all of us can work from home. If we want high-flying disabled people to hold up as examples, then they are going to need to be supported into the _general_ workplace/workforce.

And that brings me to my major point, the workplace and management. Until and unless we vigorously challenge the embedded and openly admitted disablism of the recruitment market, disabled people will not be able to participate in the workforce as equals. Until and unless we challenge the disablism of management, disabled people will not achieve their potential even where they do secure a job. Until and unless we can openly discuss our disabilities and the restrictions they can impose, disabled people's careers will continue to come to a crashing stop, as mine did.

Working from home is important, as is transforming the permitted work rules into something like common sense, but in many ways they are the low-hanging fruit of this problem, and we will only make real changes to the employability of disabled people when we challenge the general jobs market to treat us as equal members of the workforce.

Aida said...

My plan:
1) Don't force ill people to work
2) Offer a dedicated support worker to anyone who is ill and wants to work. This support worker needs knowledge of the sufferer's condition and the job market. The support worker will meet at an agreed frequency to discuss what work the person can do - bearing in mind some people always try to attempt more than they can do
3) Have a bank of workers. This may be better done in the public sector. There could be rooms in JC+ centres with computers that these bank workers can use to work on. The computers would be linked to servers such that different peole can use the same computer for different work; and different computers can be used for the same work by different people.
4) Encourage volunteering. Pay a small amount per hour for volunteering that is not in any way counted as income or results in withdrawal of benefits. The payment is instead a way of saying that the government recognises a) the person can't do standard work on standard wages b) volunteering is very good for society and this contribution should be recognised, valued and paid for

About me: I have ME. I've had it 1 1/2 years. I last worked a year ago when I was studying for a PhD at Cambridge. I was an ecologist, and went straight from a degree into the PhD. I stopped working because I was too ill to work.
I would like to work. The only thing I can do is write on subjects on which I am knowledgeable - biology, Christianity and the welfare system. I'm not aware of anyone who will pay me for such writing. I can't do any work that involves commuting or interaction with people; it's too exhausting. On a good day I might manage two hours work; on a bad day none at all; I doubt I would average above 5 hours work a week. If I want to produce quality writing I have to get someone else to check it and discuss it with me. I can't manage quantity.
The benefits system doesn't hold me back but only because my health becomes a limiting factor much sooner than the benefits system would.

Anonymous said...

Would any of these suggestions help you?
Yes, especially working from home as leaving the house is very difficult for me.

Also the work bank idea.

What is your condition, How long have you had it for?
Autism, learning difficulties, mental health issues, mostly lifelong although mental illness has worsened in last few years along with associated cognitive dysfunction.

Do you have other suggestions that you think could work?
Businesses that specialise in employing disabled people (like Remploy or a business in Denmark - I think - that employs only people with autism)

When did you last work?
Currently working very part time. Last time worked regular hours earlier this year.

What did you do?
Admin / Arts work

How long did you work for?
Still working now but very part-time, barely hanging on

Why did you have to stop working?

Would you like to work, however little?

Are you now totally unable to work?

Does the benefit system hold you back from working?

Anonymous said...

what is equally interesting is that I cannot post on Sue marsh's site anymore - I am not legal - funny that since her purge of the trolls many other can't post either - talk about hypocrisy

DavidG said...

One problem I didn't address in my previous post is the attitudes of JCP staff. My experience of dealing with them can be summed up by my very first encounter with a JCP Disability Employment Advisor. Having explained to her that I had just been made redundant from a cutting edge engineering position, she immediately began advocating for me to apply for minimum wage positions, while telling me I didn't have any real chance of getting them. Institutionally disablist is the only term I can think of to describe the attitudes I encountered. After JCP twice tried to send me to inaccessible sub-contractor's premises, I concluded the whole organisation seemed to have an active contempt for disabled people and their specialised needs, and that is something else that is going to have to be fixed in order to give us a fair chance at working.

Virginia Moffatt said...

Not disabled myself Kaliya, but absolutely support this approach. Another option is job carving, taking a post and finding the bits that an individual can do. Making a potentially smaller job out of that. Employing people on a flexible contract so hours don't exceed benefit allowances is also a good way to manage the benefit trap.

For those returning to work after long illness or coming to terms with a recent disability, it is crucial that the employer supports the person to come back in at a pace that suits, make adjustments etc. I've long thought that there should be a sliding scale on benefit reduction, so that the benefits reduce as wages increases but with a slight cushion so that it makes it worthwhile to stay in work

This is a great initiative.Well done to you and Sue for getting the politicians engaged.

Anonymous said...

Virginia at 9.07pm

In what way are the politicians engaged?
The very same people are trying to hide their expenses from the public again. The very same people are now rennting their acquired properties to each other at our expense. The very same people are threatening NHS staff with the sack unless they sign new contracts saying they will work overtime for nothing. The very same people are not concerned what happens to disabled people otherwise they would ACT to STOP this nightmare - how many more have to DIE?????????

Nancy Farrell said...

I'm really happy to see there is a larger consultation about this issue taking place and have taken part myself in smaller events.
I suffer from a fluctuating condition myself and would love to work normally, but my mental health problems mean I am too unreliable to do this. Social anxiety means I dread leaving the flat I have to psyche myself for about half an hour just to walk the dog even on good days. So as you can imagine it's hard to leave on time every morning like clockwork and arrive at a designated place on time. I do voluntary work at a bookshop at a local abbey, but am rarely on time. Employment is obviously more flexible when you aren't being paid :) and a volunteer credit sounds great would encourage more people to do voluntary work, which is very therapeutic.
On the really bad days I can't even get dressed, and may be crying uncontrollably, with a mainstream employer I'd have to call in sick saying I can't leave the flat and I don't know why. That's if I can even face having a telephone conversation, I may just not show up. An employer who's paying me obviously couldn't put up with lots of that. And I have to say, can we really call it discrimination? People are running a business not a charity in mainstream employment and need a financial incentive to to do it or they just can't, plain and simple.
I've also been looking into something called a "social firm" where someone starts a business designed to employ people with extra employment needs. It could be ex prisoners, mentally ill people, people with disabilities etc. And all the profit made goes back into improving the firm. I'd like to try something like this myself in the future, more funding and information needs to be made available for this kind of thing. The government seems to want to do away with what they call "segregated employment" but they have to see not everyone fits in neatly to the mainstream employment box. So we either work for a company equipped to deal with our needs, or there have to be major changes to mainstream employment that will be expensive to implement. And also a change in the way people think about mainstream employment that makes it more flexible for everyone, which will take years to achieve. Think it's wiser to stick with so called "segregated employment" for now don't you? Horrible and patronising term for it too, shame on the Tories for bandying this term about to justify closing Remploy factories.
If I was able to work from home this would take away the problems I have with leaving the flat obviously. I have very strong computer skills and could be using them if employers were more open minded to employing someone who is at home.
Another point we discussed was it should be easier to earn money declare it and have your benefits adjusted accordingly without losing all benefits and having to reapply. the current process is so stressful it puts many of us off even trying as the lady in the first comment above said (pseudodeviant).
I'd also like to try starting my own business, there's a range of books I could sell if I had a small amount of money to invest. And I'm learning to crochet and hope to be able to sell the things I make at some point. But neither of these things will support me completely to begin with I need my benefits to carry on at first, and probably for longer than they would currently (you can continue to get housing benefit for about a month currently I think).
Between my computer skills and business ideas I should be able to support myself and wish I could. I've been trying for years to find a way to earn money online without success.
We need a benefits system that enables us rather than penalises us for even trying.
I'm cautiously optimistic the government are looking into this, I just hope they listen carefully to what they are being told. And take into account conditions where someone is also dealing with chronic pain and exhaustion and how that effects a working day.

Anonymous said...

I'd be very interested in working from home in a flexible way. I already try to do some volunteer work from home.

I think what politicians need to realise is that while people with fluctuating conditions want to work, we're also scared of getting ourselves into a situation we then can't get out of. I live alone and can't rely on a partner to fnd me if I become too ill to work, But if I quit a job I can't claim money from the job centre for 6 weeks! And there's no guarantee of being signed off either. It's such a minefield that it's actually a scary option to consider. It really does need to be made easier and nderstood that not everybody can fit into society in the same way.

sharoot said...

Like others have said I dont want to be told i am fit to work from home because there will be nowhere I can just give in to tiredness and pain I HAD A STROKE FIVE YEARS AGO BUT LOOK "NORMAL" SO THIS IS ALREADY A PROBLEM I also have a chronic lung disease so have no energy ever. I am scared all the time because of the welfare changes I cant be stressing over that too In an ideal world maybe it would work but this gov twists everything to suit its purpose wouldnt trust them as far as I could throw them!

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Anonymous said...

Not at all amused by the content of this
The WCA needs to stop now.
As people are dying to the extent of the DWPs 73 per week exactly what is the requirement for disabled people to engage on these trems with the politicians who are sending people to their deaths.
This is appeasement of the sordid kind

Anonymous said...

The ideas people have suggested are sensible and you and Sue (Marsh) are right that it is necessary to keep talking to politicians. The problem is not a lack of good ideas from those involved, the problem is trust, or lack of it. Politicians still think we're malingerers and the DWP's behaviour is influenced by gov't policy.
Disabled people still feel that central govt just wants us out of the way. I'm copying a letter sent to The Guardian earlier this year to illustrate my point:

At a recent conference of people working in part of the voluntary sector, a wheelchair-bound woman with obviously severe disabilities spoke. She said she was able to do a limited amount of volunteer work for her credit union – a couple of hours a day – which had therapeutic benefits. The response of the DWP was, "If you are able to volunteer for eight hours a week, you can take paid work for eight hours a week." She lost her DLA because she had undertaken voluntary work with her credit union.

As long as this kind of attitude is prevalent in officials the best ideas in the world will never be applied because govt ministers are obsessed with getting the benefits bill down. Nothing else matters to them and they don't respect that a loss of income in people who are long term ill means loss of dignity and a probable decline in health. I feel Atos needs to go before flexible work options can be discussed in an atmosphere of trust. Bring back the Personal Capability assessment, ban the WCA, fine Atos every time they lie about evidence submitted to them. Then I would be more inclined to believe that govt ministers are sincere in wanting to help.

Jess said...


I'm not on Twitter,
Re Sue's speech: broadcast live on alburyj on bambuser just now to loud cheers.

You can catch up on recorded section.
Other broadcasts:


Anonymous said...

You might like see a (kind of) positive story about EDS has just appeared on the Mail web site
Best Wishes

Vicki said...

Anonymous (6.35 PM)
Just to set the record straight.

You say, "She lost her DLA because she had undertaken voluntary work with her credit union."

DLA is NOT an out of work benefit - you can be in full-time employment and still get DLA. In fact the withdrawal of DLA when it gets transmuted into PIP is threatening some people with losing their job, because they need DLA to work.

It's possible (quite possible, alas) that the DWP withdrew ESA because someone was doing therapeutic work. Sounds like grounds for appeal to me, so I hope she did. But NOT re DLA.

James said...

I like a lot of the ideas here - a shame about one of the Anonymice rejecting the notion of flexible working.

The earlier anonymouse was spot on about the sensible approach of taking his monthly payslip and having benefits adjusted accordingly; a friend of mine was semi-self-employed more recently and had a similar arrangement; as I understand it, this is what the new "real time" HMRC system is supposed to achieve as well. (Previously, your employer paid taxes on a monthly basis, but only reported the earnings they were based on annually - completely bonkers! Now they send the money and the information each month, so benefits could be adjusted real-time nice and easily.)

It's exactly what should be happening, and I'm happy to see some people already getting that: freelancing or similar, with benefits making up a gap if and when needed, instead of a stupid on/off approach taking months to help and forcing people either to commit to long-term work arrangements or give up entirely. I remember Kaliya's tale a while ago, having the option of a bit of paid work which could have helped everyone, but our stupid system putting up barriers and wrecking it all.

I wonder what the current system would make of Stephen Hawking?

Amanda Jane said...

Dear BSS,
I've just read an article about your blog activities and campaigning on the BBC website, and wanted to pass on a bit of info I thought may be useful (of course you may already have said info !)
I am English but am now living in southern Ireland. Whilst living & working over here I became ill enough that I could no longer work and finally had to face going on 'disability'. Naturally I hated this.
over here someone on disabilty can apply for permission to work part time doing something that is of a theraputic nature (emotional, physical, in fact any form of theraputic). Mine was that I needed to work to feel useful and like I was at least 'trying' to support myself.
I was given permission for this 'add on' to my disability. I can earn up to €120 a week ON TOP of my disability payments, and said payments will not be affected in any way. As long as the work doesn't harm me in any way etc.
This can be via PAYE or self employed - my choice.
I think this is a brilliant system (I'm not saying the whole of the Irish disability system is brilliant, but this part certainly is).
I just wanted to share this as it was, in part, what the BBC website article was about.
If you wish to contact me about any of this, I'm not sure how as I'm a tad unsure about putting my email up on a BBC webpage !!
Best regards and best wishes,
Amanda Norton Anderson

Caroline- aka yojikat said...

Would any of these suggestions help you?

The idea that hobbies get much better and a craft to market stall plan would just be amazing.

What is your condition, How long have you had it for?
Ehlers Danlos, PoTS, Periodic Limb Movement Syndrome, Idiopathic Hypersomnia, Raynauds, Fibromyalgia, Asthma, Depression. All for about 12 years, most undiagnosed for at least 11 years.

When did you last work?

3 weeks ago, for 16 years continuously with only a 7 DAY gap.

What did you do?

Mobile phone technical support, admin, call centre work, mortgage advice.
How long did you work for?

Why did you have to stop working?

My boss made me "redundant" as the Pots is causing memory problems, the GP thinks I am making it up and I am on a 9 month waiting list for a Pots assessment.

Would you like to work, however little?

Are you now totally unable to work?
I'm unemployable from any reputable employer due to symptoms, I could work but I need understanding that I can't lift things and may be a bit ditsy at times.

Does the benefit system hold you back from working?
Hell yes. They have seen my artwork (I paint, draw & sew) they want me to go self employed, there are no grants available, I can't get a student loan cause I am bankrupt due to an ex partner,

They are applying fr me to go on a tattoo course as there is an apprenticeship coming up where I can earn £20 per hr self employed, but I've been told it will take "months to assess if you can go on the course, we need to get 3 quotes and decide if we can send you" there aa job at the end of it, I can start ASAP, and I'm sat waiting getting depressed.

What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?

They don't support invisible illnesses like we have, people assume you are making it up and being bone idol.

The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.


You have made it impossible with employment laws, with health and safety, hospital appointments, nobody wants to be saddled with us.

In 18 months working for my last boss I had a grand total of 7 days off work. 1 week sick note for suspected epilepsy and 1 week for severe ear infection and vertigo caused by untreated (unaffordable) dental care, I shredded the sick note and went back to work after 2 days. Most normal people with zero disabilities would have more than that amount of sickness, I used all ,y holidays to go to hospital as she got narky when I needed to go to hospital. Thus meaning I had no rest time from work.

You don't help us, you hinder us

alwaysinpain said...

I suffer with a Chronic Pain condition. I am on ESA and Higher rate Mobility. However as part of my therapy and sanity I can sew this maybe a few hours some weeks or not at all . I have the chance to sell at a craft fair where I may make a few pounds or it may not even recover costs. Has anyone else done this and do I need to declare? I believe you are allowed to earn up to £20 per week but how does this work if you only sell things a couple of times a year. It is nice when someone says your things are nice and you feel as if you have some value. But I am worried that I would be classed as capable for work and this clearly is not the case as time would be measured in penny's not pounds