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.
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
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.