PIP: MP's ignorance spreads misinformation

Disability News Service just reported that two influential Liberal Democrats have disputed the government's official impact assessment of the new disability benefit PIP (Personal Independence Payment) which is replacing DLA (Disability Living Allowance), saying DLA reform fears are exaggerated.

The impact assessment estimates that 600,000 disabled people will lose the benefit altogether.

But Lord German, the party’s work and pensions spokesman in the Lords is quoted to have said

My guess is we won’t see much difference in shape at the end of it. My suspicion is that it will be nothing like the numbers of changes that people are anticipating. I don’t think these estimates can in any way be made to be accurate.

Meanwhile Stephen Lloyd, Liberal Democrat MP, concentrated on the controversy surrounding the criteria for the mobility component of PIP, which I have already extensively covered on this blog.
In essence the original version of PIP had two major problems.

1) Being able to complete any given task “safely, reliably, repeatedly and in a reasonable time period” (SRRR) was only guidance and not set in the regulations themselves

2) The criteria to receive high rate mobility was changed from 50m to 20m without consultation

Disability campaigners were able to obtain the concession that SRRR should be in the regulations and not merely guidance.
Furthermore a new consultation took place regarding the change from 50m to 20m.

Stephen Lloyd is quoted to have been "furious" about the change from 50 to 20m which "came out of nowhere".
However he mistakenly believes that the SRRR concession means that people unable to walk 50m with SRRR would still receive high rate mobility and is quoted as saying that he

“cannot envisage” how a current DLA claimant could lose their Motability vehicle if they were able to walk up to 50 metres but could not meet the SRRR test.

and

“As a regulation, that will ensure that the vast majority of people who are entitled to a Motability car on the basis of mobility will keep their car.”

He is therefore also "furious" that disability campaigners are still asking that the mobility limit return to 50m.


When I read this article and the views of these two politicians I was literally speechless.

Lord German's "guess" is apparently of more certainty than the government's official impact assessment. Why this is, no one knows. But I am sure disabled people across the country will be heaving sighs of relief.
Personally I will await the publication of the extensive research he must have undertaken in order to make such an important claim affecting several million disabled people. I am assuming he HAS undertaken this research of course...

Stephen Lloyd's comments are even more worrying. This is an MP who votes on disability policy. Yet he is clearly uninformed.
I refer him to the government's own consultation and example 2, p10, of someone who fails to obtain high rate mobility. This person can walk 20m but cannot walk 50m SRRR. Contrary to what Stephen Lloyd blithely and blissfully believes, she is only entitled to standard rate mobility.

Situation:
Sabeen is able to stand and move short distances unaided, usually between 30 and 40 metres. On a good day she can move as far as 50 metres but she can rarely ever go further than this because of severe breathlessness. She can, however, repeat shorter distances with a short break in between.

Assessment Result:
She can repeatedly walk distances of more than 20 metres but less than 50 metres. Aids or appliances do not help her to walk further in a reliable way, so the most appropriate descriptor is C. Based on this Sabeen would receive entitlement to the standard rate of the PIP Mobility component.

This is why disability groups are still campaigning.
Anyone who can walk 20m but cannot walk 50m SRRR will lose high rate mobility. Such people would be unable to leave the house without a wheelchair. If they are unable to self propel they will be electric wheelchair users. These are the people who, if the government does not change its mind, will be losing their benefit or their motability car.

And yes, Stephen Lloyd, I am "furious" about this.
And the fact that you are so ill informed that you are oblivious to our plight and spreading "comforting" misinformation makes me even more "furious".

Nothing to get up for?

As I have previously indicated on this blog, after 14 years of progressive illness and disability, I had to finally give up my career almost 3 years ago. I regard it as one of the hardest things I have ever done and, to be honest, something I am still coming to terms with.

Society has a very poor view of benefit claimants. Admittedly when any individual person sees or hears about me and my story, they always say "oh, we don't mean people like you". But it still grates and makes me feel angry or inexplicably guilty to see headlines about benefit scroungers, or 75% of disabled people really being fit for work (retractions later made), or 1 million disabled people dropping their claims through fear of assessment (claim later officially reprimanded by the office of statistics).
You only have to look at this recent tirade from an MP about badger protesters to see the sort of contempt and prejudice we may face.

I thought most of them were in the habit of lying in bed until the pubs open, or until the postman arrives with the benefit cheque (or do such things get paid straight into their accounts these days?)
Either way, since they are all malingerers and scroungers there is no real incentive to leap out of bed as soon as the dawn chorus strikes up.

Even if you ignore these false statistics and prejudice, the press and government is full of language such as people "festering" or "abandoned on benefits", being "written off" and people needing a "purpose".

So where does that leave someone like me, who already can't work and can only expect to get sicker health wise and more "disabled" as it is understood in general language.

Am I festering? Is my life now meaningless? Do I have nothing to get up for?

My response is no and I resent the implication that I stay in bed all day out of laziness or that going to the pub is my only goal in life.

After all, do working people only get out of bed on work days? Do they stay in bed all day during holidays and weekends, unable to find the will to get up because they don't have to go to work?
Do pensioners suddenly stop living when they reach retirement? Do we likewise consider that they also "fester"?

I'm not saying there isn't some readjustment. Work is a huge part of your life and losing it leaves a great big gaping hole, even more so if it is a "career" rather than a "job".
When you lose it due to illness, then you are obviously also having to deal with serious ill health at the same time. This readjustment does take some time, both physically and emotionally.

However being unable to work need not prevent you from finding things to do within your capabilities and which are worth getting up for. These new hobbies or activities may be a very long way off employability and may even seem "low level" or "small" compared to what you used to do (most of mine are done from bed!), but they can still be enjoyable and fulfilling nonetheless.
Some may simply provide personal enjoyment, but others may have a wider impact and contribute in a positive way to society.
For instance for a while I helped out on an online support group for people newly diagnosed with lupus, as this was something I could still do while bedbound.

Most of all it doesn't stop you being a valued human being to your friends and family. Maintaining these relationships is both vital and rewarding. It can also be difficult and challenging if you are very ill. Remaining (or becoming) a dependable and valuable parent/daughter/son/sibling/aunt/uncle or friend/godparent can be very large goals in themselves.
For example personally I am mostly housebound and bedbound (a situation I've improved by replacing my sofa with a daybed). I therefore invite my friends family to visit me instead rather than me go to them. Luckily they are able to do so very often and on a regular basis.
The main issue is that these visits are extremely tiring for me, and usually even physically painful. So they are something I prepare for and time carefully. The rewards though are indisputable, not just for me but for my friends and family. It is without doubt, as it should be, a two way gain.

In summary, while I may mostly be housebound and miss both my work and all the other more active hobbies I used to do such as sport and music, my day is still full of things to do as and when my health permits, however "small" they may be (just intermittently writing this blog when well enough is one of them). Some of these things simply bring personal satisfaction, while others I hope are having a positive impact on other people's lives, be it my friends and family or further afield.

A life can be good, fulfilling, rewarding and worthwhile without paid work if absolutely necessary. While I agree people should work to support themselves financially if they can, to keep implying that those who can't sit sadly around all day, contribute nothing and are worthless is both insulting and untrue.

Activism, Welfare and Support

Activism and Welfare

Many disabled people in Britain today feel threatened, scared and under attack. Many do so with good reason as cuts begin to bite, whether it be on the ground via social services, or financially with council tax, bedroom tax, LHA cuts, the uprating bill and possibly the benefits cap (the DWP is so far refusing to establish how many families affected contain a disabled member). More cuts are yet to come with, for instance, the abolition of SDP (Severe Disability Premium), the halving of the disabled child premium for those on Mid Rate Care DLA, or the removal of Disabled Tax Credits (link). Finally many will or are already losing out with the replacement of DLA with PIP, with an estimated 500,000 disabled people losing the benefit altogether.

It is little wonder then that public discourse surrounding disability has, in recent years, mostly focused on welfare. Some disability activists are dismayed by this and regard it as a failing of modern day disabled people and activists. I contest this view. The only reason disability welfare is at the forefront of disability activism is because it is currently the subject of sweeping reform. Many disabled people depend on benefits and it would be irresponsible to ignore this. If reform must take place then it must be done properly so that disabled people are not left without the support they require. So far I have seen no indication that this is the case. Until I do, I will continue to highlight the problems the reforms are throwing up and seek to amend them.

This isn't to say I don't understand the concerns of those who want disability discourse to be about more than welfare. This is NOT what I would choose to be talking and campaigning about. Indeed until a few years ago it wasn't. It was only once the changes started coming in under Labour (including a plan to abolish DLA entirely) that I felt obliged to change tack. I have been on the backfoot ever since, fighting to retain the most basic of support we already had, rather than moving forward and in particular looking at wider more inclusive support and issues than simply benefits.

Changing the Language

However, I also agree that I am uncomfortable with some of the language used by the press, in particular surrounding "fitness to work". We need to ensure that those of us who cannot work get the support we require. On the other hand we need to be careful that in doing so we do not reinforce the stereotype that all disabled people are completely incapable of work.

This is why while I agree some of the decisions made have been totally absurd, headlines like "amputee found fit for work" are completely unhelpful as it reinforces the wrong impression that ALL amputees cannot work. In practise we know that given the right job, support and the right unprejudiced employer, there is no reason some amputees cannot work. We do them a disservice by implying otherwise.

Note: the following paragraph relies on the WCA being correctly applied and disabled people being correctly placed in the support group or the WRAG

I believe part of the problem lies with the DWP language itself of "fit for work". While it may *possibly* be appropriate for people placed in the support group, it is inappropriate for those placed in the WRAG who, in theory, (IF the system were working correctly) are those who can at some point return to work with the correct support. More to the point they are supposed to be those who currently are able to use support to start preparing for work. A better headline might therefore be "Amputee denied support to find work".  

You might tell me this is just language and semantics, but I think it places a different emphasis on things. Instead of trying to divide people into those who can and can't work, those who are fit and unfit, we are trying to identify people who require extra support to enter employment, due to either physical or attitudinal barriers.

As to what language to replace "unfit for work" with, perhaps "face barriers/extensive barriers to work" would be more appropriate. If this is too complex, perhaps just "difficulties" could be used.

Proper Test

Unlike the WCA a proper test should therefore look for and identify what medical, societal and practical barriers to work the disabled person has, so for example including such things as transport and prejudicial discrimination as well as medical and functional impairments. 

If these are so great that they cannot reasonably be overcome then the disabled or sick person cannot be expected to work. Additionally if, when every practical and attitudinal barrier has been addressed the person still cannot work (for instance due to medical issues) then they also should be fully and unconditionally financially supported.

If, on the other hand, the barriers could reasonably be overcome with access to support available through current government funded schemes such as Access to Work, then the disabled person should be given and must use every practical support available to do so. This practical support does NOT happen now and is one of the biggest flaws in the system. Given the time it may take to take advantage of this support, added to employer discrimination, the disabled person should also be fully financially supported.

If the person does not have any significant barriers to work, then they should claim JSA.

Proper Support

Note: This support should be available to all whether or not they are "expected" to work.

Before I became involved with campaigning on welfare, I was partially interested in issues which enabled disabled people to be independent. Examples include the adequate provision of wheelchairs, appropriate social care and accessible accommodation. 

If any one of these is lacking then the disabled person may be unable to work. For instance if they do not qualify for an electric wheelchair but cannot leave the house without one, they cannot get to work independently. If their care agency will not send carers before 9am then they cannot get to work on time. If their house isn't accessible they may be housebound.

If the disabled person has problems with these and they are a major barrier to work, then DWP support should include sorting those problems out in tandem with the appropriate government agency.

Disabled people should from the outset have access to facilities such as Access to Work so they can become aware of all technology and equipment available to them under the scheme. They should also have access to training to learn to use any such equipment if necessary. This could help people both privately and in the workplace. They should also be informed of such things as whether they would get help with transport to work and what limits this would have.

Another important issue is education and training. It may well be the case that newly disabled people need to retrain or, given previous bad record on education, longer term disabled people may need access to higher education for the first time. They should be allowed and encouraged to do so, even if it means being unemployed for longer.

Disabled people should be valued as much as their non disabled counterparts. They should be expected, encouraged and assisted to apply for jobs suitable to their experience and education. It is currently far too common for disabled jobseekers to be routinely directed to inappropriate lower level jobs instead of being given good advice and support.

However it should be recognised that some "barriers" come in the form of reliability, endurance, concentration and other such medical issues. While full time paid employment may be a reasonable goal with support for some, a few hours volunteering may be the only viable option for others. Realistic goals should be set rather than hounding people into full time employment at all costs. Therefore part time and volunteer work should be deemed acceptable and even encouraged for those whose barriers to work exclude any other form of "employment".

For those who are unable to take on any form of employment, paid or otherwise, a more flexible approach should be taken to the nature of "work". Many very sick and disabled people for whom employment is impossible nonetheless attempt to maintain hobbies, sports or leisure activities. This should be supported and encouraged both for long term mental and emotional welbeing or for some, from a colder more practical viewpoint, as possible first steps on a road to recovery. This support could take the form of exploring the possibility of sporting, craft or musical activities in the area, developing IT skills such as blogging and twitter, or signposting to support groups (online or otherwise).

However none of this addresses the prejudice among employers (for instance 45% believe they cannot afford to take on a disabled employee). So parallel to this would have to be a drive to encourage or force employers to take on disabled people on their own merits. This could include dispelling "Health and Safety" myths, dispelling sick leave myths, advertising the Access to Work scheme, improved media coverage, paid work experience placements, and outreach projects with working disabled people, particularly those who are on flexible working patterns. It should also include reminding employers of their duties and responsibilities.

As all of this will take time, it should be accepted that most disabled people will be unemployed for longer. This support should not be time limited as it has become now.

In summary out of work disability benefit should change from just identifying people who can't work to identifying the support disabled people require and taking firm steps to make sure they get it while simultaneously tackling employer discrimination and encouraging more flexible working practises.
I emphasise though that this should be as well as and not at the expense of those whose barriers to work are so great that they are not able to work. However even for this group far more support could and perhaps should be given than at present.

Social Services Cuts on the Ground:

I feel very ill today. Not a day I would normally write. But what I heard yesterday was so shocking that I can't settle until I've written it down!

I received a call from Social Services yesterday, asking to come and visit me that afternoon regarding my care plan.
I was very pleased as I had been hassling them for the past three months to come and see me and update my financial assessment to work out my contributions towards my care.

It soon became clear that this visit was nothing to do with this, but was my annual report "to check how my care plan was working out and that everything was ok".
I mentioned my issues with finance and the social services chap duly made a note to contact the finances department upon his return.

The chap was lovely: very friendly and understanding. He had a long sheath of notes from the last time I had gone through this rigmarole so he said we didn't have to go through all the questions yet again. He asked how I managed my carers/Personal Assistants (PAs), what work they did for me, how I managed and if I was happy with what I had. He checked on my safety, particularly asking after the number of falls I have, my alarm button, and my arrangements in case of particularly bad seizure clusters or coming out of hospital.

So far, everything fine and dandy. As we finished up he laughed about the situation with Finance commenting that normally they would chase up any "change of income" like a flash, seeing an opportunity to get more money out of the client.

He then added: (pretty much exact wording as far as I can remember while it is fresh in my mind)

"I mean, at the moment, I'm going round and our clients have to justify the care packages they've already been given. We're told, go out there and do everything you can to save money. If you can find any reason, any small excuse to reduce hours, do it. I have to save a certain amount every week. 

I mean you're ok. I'm going to go back and say "this is great, good value for money, whatever you do, DON'T touch it." But because I haven't saved money with you, this means I'm going to have to cut money from other people I see.

It shouldn't be too bad at the moment because I managed to save £750 from a care package last week, which is great. So they're really pleased with me at the moment... well... I suppose it isn't great for the poor sod who lost his care package, but I mean, I did find them alternatives so I don't feel too bad about it.

You can usually find ways to save money. And I do find people who receive care who shouldn't be. I'm usually really pleased to take away their care. But I mean, they're usually the people playing the system and who should be working but aren't."

I don't know where to start with this statement.

a) I was sent someone here on false pretences. They were not here on my behalf to to "check how my care plan was working out and that everything was ok". They were here on behalf of the council to see if they could cut my hours at the slightest excuse.

b) Targets are being set per council worker, ie per case load. This means that it doesn't matter how much in total need that case load is, a certain amount MUST be saved, regardless of the needs of the individuals concerned.

c) The attitude being fostered is obviously poisonous. This was on the surface a genuinely nice sympathetic guy. Yet he had been suckered into a system where he thought it was right to go round taking care hours away and judging people.

And before you tell me that he is a professional who would know who is playing the system, I would add that he had never heard of lupus, a relatively common and in some cases debilitating autoimmune illness which renders 50% of patients unable to work. Yet on the surface most people "look well". How many of the people he has judged "capable of working" and "undeserving of care" have similar diagnoses of which he is ignorant?

There are a lot of people dismissing claims of problems and cuts in social care as scaremongering. Yesterday's experience is to me direct personal proof of the effects on the ground.

P.S.  I'm spending today feeling guilty at the thought of those unknown unsuspecting fellow disabled people in that chap's caseload who ARE going to lose hours from their care package this week, simply because I did not...

If you can, can't you just...

David Cameron gave a speech recently at the Disability Employment Conference, which marked the launch of the government's "Disability Confident" initiative.

I found one paragraph extremely telling. Many will probably see nothing wrong with it and perhaps even find it "inspiring". To me it explains a lot not only about current government welfare policies but wider social views surrounding sick or disabled people who cannot work.

Here it is:

Now that was a message pioneered by Chickenshed, who are performing for us today, as they did on their first occasion nearly 40 years ago. They tell us that there’s a saying in Africa that if you can walk, you can dance, and if you can talk, you can sing. But Chickenshed say even if you cannot walk, you can dance; and even if you cannot talk, you can sing.

As was pointed out to me in the comment below, one way of interpreting this is that people can and should be encouraged to do things differently. The end result is what is important. This is true and certainly something I did while working myself, often having pro-actively to demonstrate it was possible to my employer. However in my experience many are more likely to go for the original African saying and believe that walking means you can dance, talking means you can sing.

I do understand this to a point. I am rather unique in that I have encountered many facets of disability and illness. I did go through a period of remission and during that time I had to relearn to walk. So I have experienced rehabilitation as well as experiencing other sides such as sudden onset of disability from one day to the next followed by a progressive illness leading to gradual deterioration, slowly losing more and more abilities.
When you are getting better and doing something like relearning to walk, the above attitude does pay off. I remember that each day I would walk a little further. One day I would walk to the garden gate. I would tell myself that if I could do that then the next day I could get to the post box a little bit down the road. And I did. And so on. But the same does not apply to a stable or deteriorating illness or disability if you have already pushed yourself to your limits.

It is an attitude encountered again and again, particularly online when people declare that everyone is able to work. I have written about this before "If you can type, you can work". There are many variations on this, some more extreme than others. "If you can use twitter, you can work". "If you can go shopping, you can work". "If you can use a computer, you can work". "If you can write a blog, you can work".

The thinking behind this is exactly the same as that announced by the Prime Minister, but is fatally flawed.
Someone who is just about able to walk with great difficulty and pain may not be able to dance.
Someone who is barely able to talk may not be able to sing.
People take the ability to do one small thing as proof of ability to do something a little bit more challenging. For a healthy non disabled person the difference between the two things may seem so small as to be meaningless. For a disabled or sick person the difference may as well be a mountain.

Let's take a concrete example.
I use an electric wheelchair. My arms are as messed up as my legs and I can only walk a few steps. But following this logic:
If I can walk a few steps, I can walk across the room.
If I can walk across the room surely I can walk just a few more steps to move from room to room around the house.
If I can walk around the house surely I can walk just a bit more to walk up the garden path.
If I can walk up the garden path surely I can walk to the road.
If I can walk to the road surely I can walk just a bit further to the end of the street.
If I can walk to the end of the street surely I can walk just a little bit more to the post office.
So in fact I'm a complete fraud for using a wheelchair, right? Right?

The stupidity of this logic is very easy to see when we talk about something obvious like mobility and wheelchairs. But exactly the same process applies when comparing using a computer, twitter, occasional blogging, perhaps doing a shop once a week and being able to hold down a regular job. If those activities are already the absolute limit of the sick person's ability, then no, they can't "just" do a bit more and do enough to do a job.

This same reasoning is also found in "testing" for disability benefits. Being asked if you watch TV can be taken as proof that you can sit up and concentrate. In my case I have a daybed, watch TV lying down and usually don't get to the end of a program but have to have a break and watch it later. So it would be wrong to do so.
As another example I am currently writing this blog post lying down flat on my back and it has taken me several attempts and rests. Now that is ok. I have come to terms with this and I will not let it stop me from writing it. However the finished product should not be taken as proof that I can sit at a desk and concentrate for a long enough period to write articles like this one.

Testing whether people can work or not should be extremely careful not to make those mistakes. In fact in my opinion ideally the whole process should not be a black and white medical functional test at all but a sliding scale allowing people to do what they can with the best support (and make sure they get it). It shouldn't matter whether that be nothing, 1 hour a week, 10 or 30 and voluntary work should be an acceptable solution, particularly for those whose conditions mean they cannot be reliable. Unfortunately all governments have been implacably opposed to anything resembling a real life test and so this is likely to remain wishful thinking.

IDS: Belief vs. Statistics

I am extremely disappointed to once again have to draw attention to Iain Duncan Smith. You would think that having been publicly rebuked by the independent UK Office of Statistics, in addition to the official inquiry by the Committee of Work and Pensions into the use of Statistics by the DWP, that he would now be more honest with his dealings with the media. It would seem this is far from the case.

The benefit cap was rolled out across Britain this week. It imposes a limit on the total amount a family or individual can receive in benefits which is equal to the average earnings (not income). This amounts to £500pw for a family and £350pw for an individual. Disabled people in receipt of DLA or its successor PIP are exempt as are people on some other similar benefits.

Iain Duncan Smith was rebuked by the Independent UK Statistics Authority for claiming that 8000 people had found work as a direct result of the benefit cap. This was found to be "unsupported by official statistics". The chair further added that the figures were "not intended to show the additional numbers entering work as a direct result of the contact". This misuse of statistics had become so routine that the Work and Pensions Select Committee conducted an official inquiry.

This has not stopped Iain Duncan Smith from making the exact same claim on Monday April 15th, this time claiming that 12,000 people have gone into work as a direct result of the benefit cap.

Astonishingly, when confronted on this by John Humphrys, Iain Duncan Smith refuted the finding of the UK Statistics Authority, saying that they had only said there was no evidence of a link. Going further he said that no one could prove that what he said wasn't true and that he "believed" it was.

This is truly mind blowing. This is a minister in charge of sweeping welfare reform. Yet he feels able to ignore DWP statistics, rigorous analysis and an Independent expert body all on the basis of his "beliefs", with the childish retort that "you can't prove it isn't true".

Well on that basis I believe in the Flying Spaghetti Monster (FSM) and since you can't prove it isn't true, then it exists. I assert that 5% of children have seen the FSM and around 8% of adults. I believe that better working conditions should improve this percentage to around 10% as I believe more relaxed people are more open minded..... *sigh*

Two main issues arise from this:

The first is that any statistical claim made by this minister can only be treated with suspicion. He is willing to ignore analysis in favour of what he "believes". He believes this so strongly that he will ignore independent experts. Although I do have to ask: surely ignoring a rebuke by the Statistics Authority to the point of repeating a false claim is misconduct?

The second is potentially more serious. This man has been in charge of possibly the biggest welfare reform Britain has ever seen. In this process how many other experts, analysis and statistics has he ignored in favour of what he "believes" and "feels" is right?

There are good reasons we conduct research and compile statistics when completing large reforms. Manipulating or ignoring them at ministerial level should not be tolerated.

Access To Work and Volunteering

In what can only be called irony, 2 days after I posted this the government announced they were widening the Access to Work scheme to traineeships, supported internships, work trials and work academies!  Hopefully volunteer work will follow soon.

___________________________

My most public and reported campaigning has been to do with welfare reform, social care and disability benefits. However I have also been active in other areas. For instance I am a keen advocate of the Access to Work scheme, designed to help disabled employees finance solutions to difficulties they might be experiencing. It might pay for things like specialist equipment, travel when public transport isn't possible or workers such as communicators.
I started campaigning in 2011 after changes were introduced which put serious restrictions on what could and could not be purchased.

In my case Access to Work was pivotal in holding down my job as a Research Fellow in mathematics at University. Had the above restrictions been in place my employer would have faced an extra £1000 costs at the very least. It is impossible to say whether it would have affected my successfully getting my job or not, but it is hard to imagine that all employers will happily fork out the money.

Disabled people are used to being creative in getting round obstacles. Most of my fund was used for conventional items: adapted mouse and keyboard, magnification software, accessible desk, portable electric wheelchair for conferences, extra travel costs to pay for accessible travel, notetakers, etc..
However I also used part of my fund to buy a sofa so I could lie down in my office. This took a bit of convincing as you might imagine! This occurred at a point in my illness when I could not sit up for more than 20 minutes at a time before experiencing increasing pain which interfered too much with my creative process. Luckily I could quite happily work lying down. That sofa meant I was able to work from my office rather than home for 2 years longer than otherwise would have been possible.

The 2011 restrictive decision was reversed in November 2012 and disabled people and Access to Work advisors now have much more freedom to decide what is required. There had been a steep decline in the number of people receiving help from the scheme in the past couple of years so hopefully that will be reversed. There have been promises of increased publicity for the Fund and I hope the government will actually deliver. Both Employers and disabled people need to be aware of this source of help.

Access to Work and Volunteering

Despite all this there there remains one big thing I would ask for which is for the scheme to be open to disabled people doing volunteer work. I believe this could be a key step for many disabled people currently claiming ESA, particularly those in the support group, whether or not they will ever be able to take up paid work in the future.

Volunteering is not the same as paid work. It does not necessarily require the same commitment or reliability on the side of the disabled or ill person. For instance someone who is regularly but unpredictably ill might volunteer as an "extra" person. Their presence is a welcome bonus, but on those days they can't attend, the business, charity or social group does not suffer.  This would never be possible for a paid position.
As an example, my local Mother and Toddlers group currently has enough staff to run it, but would always accept more people to help out at one of the crafts tables, or with the reading group. Were a disabled and chronically ill person to volunteer to do this, it would be appreciated, but it would not be a disaster on the days they were too sick to attend.

For many people, particularly those in the support group of ESA, this will go no further. A few hours per week volunteering is as much as can possibly ever be hoped for. Even this may be extremely difficult and unreliable. For others it will always be an impossible dream. However the psychological benefits of going out just a few hours a week and choosing to volunteer cannot be underestimated. Even if it isn't paid work (which currently seems to be all that anyone cares about) it is extremely worthwhile for all concerned.

For some the volunteering may become a stepping stone to something more. This might particularly apply to people whose illness or disability stabilises or improves. They may as time goes on, become more reliable, be able to increase hours and eventually progress to a point where they feel able to move on to paid employment.

All of this is irrelevant though, as for many disabled people none of this will be possible without help from Access to Work. I strongly feel opportunities are being missed.


Important Note: I am talking here about volunteering, the key word being "volunteer". This should be the complete choice of the disabled person. It should be something they themselves feel capable of doing and with the advice and blessing of their doctors/consultants. It should be done completely and utterly without coercion of sanctions and without fear of withdrawal of benefits.