Saturday 19 November 2011

Prisoners have more rights than disabled people

Yesterday saw 2 cases brought before the courts by convicted killers for breach of their human rights because of the use of "slopping out". In other words they had been expected to use buckets which were later emptied rather than being taken to the toilet.

I totally agree that this practise is upsetting and degrading. But it is no worse than what is expected of thousands of disabled people up and down the country. Unlike convicted killers however, disabled people have no recourse to the courts. Their human rights are not deemed to be breached in any way.

As budgets are stretched to the limit and social services cut back on care more and more, disabled people are expected to use commodes in their own homes in between visits between carers. This is the equivalent to "slopping out", except that it is fully condoned by social services. Worse, some disabled people who cannot use them have been told they have to soil themselves and be cleaned up when the next carer arrives. I put that this is a far greater breach of human rights.

The blatant disregard for disabled people was all too evident in the landmark case of ex ballerina Elaine McDonald. Her night time care was removed as it was deemed too expensive. Unable to use a commode herself, she was instead issued with incontinence pads. Now this lady is NOT incontinent. But she was expected to wet herself and be cleaned up in the morning. She took her case to court but it found in favour of social services. The supreme court judge Lady Hale who was against the ruling was extremely "troubled" by the finding. But that is of little comfort to Elaine and disabled people across the country who now fear similar actions by their own social services.

In other words, when it comes to disabled people, it is not a breach of their human rights to expect them to soil themselves if it is financially advantageous. It is different when it comes to convicted murderers however, if they are expected to use the equivalent of a commode.

Thursday 10 November 2011

BBC: Betraying Disabled People

As a British citizen who owns a working television I have to pay my tv license. In return I expect a certain level of service from the BBC, which is meant to be an impartial organisation.

It therefore came as rather a shock to see the latest edition of Panorama which was more worthy of the Daily Mail than it was of the BBC.  Called "Britain on the Fiddle" it showed disability benefit claimants who owned yachts, played golf and it made such claims that the DWP loses 22 billion a year to fraud and error.

The program was unapologetically sensationalist, but worse, either wrong or factually misleading.

It made no mention for instance that incapacity benefit is a non means tested benefit. It is paid to people who have faithfully paid their national insurance contributions and then become too sick to work, checked by a system which is said to be the most stringent in Europe and set to become even more difficult. It is perfectly possible therefore for someone to have savings or own a yacht yet not be a fraud. Do we, as a society, want to push people who have worked all their lives and paid their taxes and national insurance contributions into penury if they have the misfortune to become sick?

The £22 billion figure was even worse. It had no place in a program about disability benefit fraud. Firstly, it is the figure for fraud and error across ALL benefits. Secondly the figure for fraud is only £3.3 billion, the rest being government error. Yet this figure was not mentioned at all. The figure for disability benefit fraud in particular is £1.1 billion. This figure was certainly not mentioned. The general public will have come away from this program with the erroneous, misleading and damaging figure of £22 billion.
When challenged by a member of the public, the BBC all but admitted it had misled the public:
"I understand you were unhappy with the figures that were given out by this programme as you felt they were inaccurate.

I’m sorry if you felt the figures were inaccurate but what was stated in the programme was:

“22 billion pounds a year. According to the latest research that’s how much fraud and error costs the government. A significant chunk of that is benefit fraud.”

As you can see the programme didn’t state that fraud and error in the DWP cost £22 billion but rather that fraud and error overall.

Now, 1.1 billion out of 22 is not a "significant chunk" by any means. It is 5%. I expect better from the BBC, a company I pay for and is supposed to fairly represent all members of society, not demonise them.

This follows a trend from the BBC.
Over the past year it has:
Closed down the disability messageboard despite great protest and without undertaking an impact assessment.
Chosen not to cover the Paralympics.
Shown little to no coverage of the Hardest Hit marches, the largest street demonstrations of disabled people in the past decade.
Refused to report on the stories of the problems of the WCA and its impact on disabled people.
Refused to report on UNUM, ATOS and their vested conflict of interest in designing the WCA in the first place.
Not reported any disability linked questions at any of the recent party conferences even when Ed Milliband was caught out at question time and the questioner was followed right the way to the toilet to get her story!

Now the BBC seems to be crossing the line and actively attacking disabled people on benefits. This comes at a time when hate crime against disabled people is rising rapidly, when savage cuts are being proposed and hoped to be passed thanks in part to a misinformed public who wrongly believe that fraud is rife and benefits easy to obtain. The BBC should be informing the public, not joining in on a witch hunt.

Shame on you, BBC.

Sunday 23 October 2011

Breaking Promises

Yesterday saw the second major day of protests by disabled people in the Hardest Hit campaign, following the first organised last May. Disabled people from around the country and from almost all disability groups met at 14 places to make their voices heard. It is almost unheard of for so many disability organisations to unite so unanimously in this way. Indeed it is jokingly said that the only achievement of Maria Miller, minister for disabled people, has been to unite disabled people and organisations in a way that has never been seen before.

Although the number of people marching may appear small when compared to other demonstrations such as those against tuition fees, it must be remembered that for every person marching there are hundreds unable to, either because they are too ill or perhaps because of accessibility issues. I am one of them. Many disabled people are invisible and the general public and indeed the government must be reminded of this. These protests show just how bad these benefit reforms are and how scared disabled people are.

But although there was some small media coverage, most of the attention was directed elsewhere. Worse, promised interviews were cancelled at the last minute. Sue Marsh, a now well known disability activist, due to appear on Radio 5 had her show cancelled. I myself had my own telephone interview stopped.

When a single benefit cheat is discovered the media fall over themselves to splash it over the front pages. When thousands of scared disabled people take to the streets telling their stories of a broken and faceless system which is set to get even worse, there is barely a mention of it.

As an example, the Sunday Mail got into trouble for falsely claiming that thousands of children with ADHD, which they called "naughty child syndrom" got free cars though the motability system. Although they printed a correction, it is that headline which will be remembered.
Worse, they may have played a role in the change to motability rules which will have a huge negative impact on thousands of disabled people. This is what they reported on instead of the disability marches yesterday. Furthermore they referred back to their original ADHD claims without mentioning that they had been false.

The media continually prints that the government says their only goal is to make sure that the money goes to those who need it most. The fact that they are making a 20% cost cut or the fact that  people like myself, who receive the highest disability awards and are in the government's own words "the most vulnerable", face a £30 per week cut, 20% of my income, is never mentioned.

The government has much to answer for. They broke and are breaking the promises they made to protect disabled people. But the media also has much to answer for. They shape public opinion. They are the ones who control what the general public knows. What is the point of disabled people knowing the truth if it is impossible to let everyone else know? The media has a duty to inform. They are failing in that duty.

Wednesday 5 October 2011

Hard hats needed

Although I value my independence and would not live my life any other way, there are times I feel a little lonely with just my fish for company. Ideally I would like a dog but that is impossible for both practical and tenancy reasons.

I have however returned to childhood and bought myself a little hamster. Well, I say little... As far as hamsters go, he is an enormous fat fluffball. But don't tell him I said that.
Hmmmm.  I should probably also keep it a secret from ATOS, the medical company who determine if you're fit to work, who reputedly think that if you have pets you are fit to work. (It really is a question they are told to ask claimants!)

Yesterday saw me engaged in an epic battle of wills with Chewbacca (Chewy for short), who suddenly decided that sleeping in the comfortable snug house at the bottom in the cage was a bad idea and he would instead make his bed inside the plastic tunnels meant for exercising.
Ignoring the laws of gravity, he carefully carried his food and bedding all the way to the tunnel and left them there to go and fetch more, whereupon they promptly fell out. I would gather them up and put them back in his bed, but to no avail.
He eventually fell asleep in the tunnel, falling out onto his head half way through the evening. I'm still wondering whether this will knock some sense into him or cause irreparable brain damage.

Throughout this frustrating battle I couldn't help but be reminded of how I feel at the moment with the government. Take something that works and stubbornly try something different which quite obviously will not.  We fight against it with all our might, knowing that if we don't something bad will happen.  Right now I'm just waiting for the government to fall out of their own tunnel onto their heads.

The only difference is that in Chewy's case the only person hurt was a little (ok, fat and fluffy) hamster. With the government it will be thousands of disabled people. Maybe we all need to be issued with hard hats.

Friday 30 September 2011

I'll say I'm sorry... but that man still should have been working you know...

This week saw the Labour conference completely ignore any disability linked issues by deleting them from the agenda.

Luckily the leaders were not going to quite get off scott free and Kaliya Franklin and Sue Marsh were there to try to get the opposition to, well, oppose some of the harshest cuts and changes to hit disabled people in recent history.

Kaliya finally got a chance to question Ed Miliband 
"Evidence is overwhelmingly pointed to sick and disabled people being the hardest hit by the cuts, but this issue has been airbrushed almost entirely from conference. Are you reluctant to use the word disabled because the public has been so effectively convinced that we’re all scroungers and that the Labour party are not willing to challenge that stereotype on our behalf?"

She did manage to get an "almost apology" out of him:
"I take your point that I didn’t say in the speech yesterday, and I should have said it, fair point, that you’ve got to defend people who are with disability, ill health, and say that they shouldn’t be under attack"

However he still shows himself to lack understanding and show the same prejudice which permeates the whole system we currently have.

A few months back Ed Miliband made a speech which started off by saying he'd met a man on incapacity benefit and thought he could work even though his disability was genuine.
When Kaliya challenged him on this, rather than see how much harm this could cause disabled people, he defended himself as follows:
"my impression which is that he was somebody who had lost his job, I think ten years ago, right (...) the system didn’t sort of demand that he go back to work, the system sort of wrote him off"
"And the problem is, I met his next door neighbours, and they, genuinely, this is a story, I met his next door neighbours and they didn’t actually refer to him but they said ‘look, our problem is we’re working incredibly hard and we’re worried for we’re paying for people who can’t work"

In other words, with no medical information, no background, nothing except his own impression the the man "looked ok" and had been on benefits for a long time, Ed decided that he should be working. 
In particular he was encouraged by the fact that this disabled man had neighbours who resented the fact that he wasn't working.

This disabled man could have had any number of illnesses. Not everything is visible to the naked eye. Many serious and debilitating conditions do not show on the surface: lupus, MS, severe epilepsy, various neurological conditions, not to mention mental health illnesses.
His neighbours might not necessarily be aware of this man's medical conditions. They could simply have been jumping to conclusions and jealous. At worse they could have been disablist.

But Ed did not consider any of these things. The man looked ok and had been on benefits for 10 years. His neighbours were "hard working" and didn't want to pay for people who didn't work. Their word trumped his. They were believed and listened to. The disabled man was not. It was assumed he could and should be working as he had been on benefits for so long.

This in particular is something that people don't seem to understand. Some illnesses and disabilities are long term. That is what treatable but incurable means. You won't die, but you won't get better either. You will be just as sick 10 years on as you were the first year. And you will be just as incapable of work and just as much in need of benefits.

Sadly though it is this way of thinking that has brought us to where we are today.
If you look ok, then you probably are ok.
If you look ok and are on benefits then you are either lazy or are fraudulent. Tougher tests will help this.
Some people have been on benefits for a long time. This is because they have been "abandoned" on them but with help they would work. 
To stop this the new system will demand that they work and benefits will be time limited. 
People will have to work for their benefits, undertaking certain tasks, even those deemed as unfit for work, or face sanctions (removal of benefits for a time).

All of this completely ignores the reality of illness and disability. The people this will hit are not the very small number of fraudsters (0.5% of claims) who will be able to jump through any hoops thrown at them. Quite the opposite they will hit and harm the very disabled people these benefits are there to look after.

New assessments are rigid and very much like Ed do not take into account medical history but just look at a claimant on a certain day and see if they look ok and can do a few easy tasks which bear no resemblance to what is required to do a job week in week out. The system has been found unfit for purpose by every single inquiry into it.
By time limiting disability benefits very disabled people will suddenly lose their benefits through no fault of their own apart from being sick or disabled for "too long".
Sick and disabled people will find themselves sanctioned and lose their benefits when they are unable to do the tasks set for them by non disabled people unaware and completely out of touch with the realities of living with disability. Already people have lost their benefits for not attending an appointment with their Jobcentre advisor when they were too ill to attend. Remember that these are sick people classed as unfit to work.

Ed, sometimes what you see is not what you get. You offered to meet Kaliya and discuss this further. Please do. And please listen. Disabled people are getting desperate.

Saturday 24 September 2011

The accessible corner shop... or is it?

Yesterday saw me in a slight panic as I realised I had no birthday cake for my friend's birthday party today. I then remembered that I am feeling slightly better at the moment and am not housebound (this is still a constant happy surprise to me!). My trips out have to be short and I pay for them with a lot of pain and going back to bed (at such times I really love my duvet and heated mattress), but nonetheless it is wonderful to get some fresh air and enjoy the freedom of the outdoor world if only for a little while.

Only having an hour before my evening carer arrived I jumped into my outdoor electric wheelchair and hared off down the road. I arrived at the first corner shop. I hadn't intended going in there as it had never been accessible. To my surprise they had installed a big automatic wheelchair accessible door. Greatly encouraged by this, I decided to give it a go.

The door itself worked perfectly and I found myself inside. So technically, yes, the shop is accessible. I CAN get inside. After that I can wistfully gaze down some narrow aisles before performing a 20 point turn and leaving again.

Ah well. The slightly bigger shop further down the street was nicely accessible with wide enough aisles, and armed with a cholesterol-ridden, heart-attack-in-a-box chocolate cake, I returned home.

Friday 23 September 2011

When a life is worth less

A man admits to smothering his wife with a pillow. What happens?
He is admittedly suffering from depression. But if the wife is fit and healthy, that would never be deemed an excuse and it is hard to imagine that he would walk free.
But if the wife is suffering from a progressive and terminal illness, then it is a different story.  Stuart Mungall walked free after claiming it was a mercy killing.

But here is the catch. The day before she was killed, the wife had told a nurse that she was "taking it in her stride". At no point had she indicated that she wanted to end her life. Stuart himself does not claim that she told him to do it. He simply says that he "saw it in her eyes".

At a time when many people are pushing for a change in the law to allow assisted dying, with one option being decisions rendered by the courts, is it any wonder that many disabled people are scared and worried? Warnings of a "slippery slope" are often dismissed as scaremongering. But how can they be when already today disabled people do not receive justice in the courts? As seen here their killers are sympathised with and let off the hook. The mere fact that she was facing a difficult illness and that he was struggling to care for her was enough for him to walk free.

If caring for his wife was so hard then more help should have been given. She should never have been left at the mercy of a man who either put his own wants and needs above hers and took her life for his own convenience or whose mental health was so impaired that her safety was at risk. The fact that this has now been tacitly legalised by the court is deeply disturbing.

The truth is that her life was regarded as less valuable than that of a non disabled person. Otherwise he would have received the same sentence as someone murdering their non disabled spouse. Depression would not normally excuse murder.

The judge praised Stuart's love and devotion in caring for his wife during her "difficult" illness. Astonishingly this appeared to therefore logically imply that he had been acting in his wife's best interests out of love, ignoring the fact that she evidently still enjoyed her life. However a mercy killing is only a mercy killing if the person dying has expressed a wish to die. It is not up to the family or others, including doctors or the courts to decide when a life is worth living. It is up to the person living it.

With assisted dying once again on the table and in view of this sort of case, can we really trust the courts to tell the difference and ensure no one is ever coerced or guilt ridden into this decision?
Will they really make sure the disabled person has received all possible support, including mental health intervention and independent social care to ensure the best possible life?
Will they even be able to recognise the worth and quality of life of a disabled person with very restrictive impairments?
Will they make sure the disabled person is not directly or indirectly being adversely influenced by their loved ones?
Or will their own biased views of what is an acceptable quality of life and an emotional view of the "sacrifice" of families and carers inevitably colour any judgment they might render?

Tuesday 13 September 2011

Paperwork Madness

Managing my paperwork has become more and more of a headache as my illness has advanced.

Some tips have helped. Precarious tottering mountains of paper were moved into folders. Creaking unliftable folders were later sorted and emptied into a lightweight filing type cabinet. However I still struggle to keep up with the unending weekly post and letters can be found dotted around my flat in the most unlikely of places.

After 2 years of asking for help and several threatening letters from social services wondering why I wasn't dutifully sending in my records and receipts for my direct payments, I was reassigned a social worker.

This led to a reassessment which took several 2 hour long sessions after which it was agreed that I did indeed need an hour of help a week for paperwork, to be added to my direct payments. I was informed that I would have to undergo the same reassessment 3 months later to check that everything was "ok" and I was using the hour for paperwork. (Drat. There goes my plan for weekly skydiving).

This had to be written up as a report and presented to a panel for approval. Unfortunately it was turned down by the council who insists that I MUST use an agency chosen by them. And I am only allowed an hour a week for a month and half an hour after that. So much for disabled people having choice over their lives.

Not only this, but because of this "increase in care" I must now have a financial reassessment. They will kindly send me a list of all the paperwork I will require at the meeting...

This leaves me in a bit of a dilemma. I am not physically able to prepare this paperwork myself. But with the limited hours they have allocated me, I do not have the spare time to ask my newly allocated helper from the agency to help me either. We are currently ploughing through a backlog of paperwork and sorting out my filing cabinet, before scouring the flat for all the letters currently hiding and giggling from under various pieces of furniture.

In other words they are asking me to produce the paperwork myself so that I can have someone to help me with paperwork...

On a separate note I am appalled by the cost of all this. The amount of extra care I will receive totals 28 hours per YEAR. I will be expected to contribute a third of the cost under the "fairer charging scheme" which laughably charges people on benefits but not people who work (a subject for another time perhaps). So the yearly cost to the council will be around £170.

How much more have all these assessments cost? And that's not counting the exhaustion and inconvenience caused to myself. All this for half an hour help with my paperwork.

P.S. My "paperwork helper" was just here. I asked her if we would be ready for a financial assessment in 2 weeks time. She laughed.

Thursday 25 August 2011

Your year is up! Get thee on your wheelchair and find a job!

I wrote to my MP recently regarding time limiting of ESA. I am totally disgusted by the reply forwarded to me from Minister for Welfare Reform Lord Freud. But I will concentrate on just two paragraphs.

Currently people can qualify for many years of benefit on the basis of NI contributions made over a relatively short period of time. This is no longer acceptable in the current fiscal climate were we need to review the balance between contributions paid and indefinite entitlement to support.

So there we have it black on white. The principle on which the welfare system was founded “To each according to his ability, to each according to his need” is to be abandoned. Woe betide you if you have not paid much NI. More worryingly, following this logic, contributions based benefits could well be under further threat down the road.

And the reason behind this? “The current fiscal climate”. In other words, disabled people are to bear the penalty for errors in judgment made at the highest levels and which have destabilised our economy. In a civilised society are these really the people who should be bearing this burden?

It is very tempting to follow Freud’s reasoning and blame the benefit recipient for “taking more than they put in”. But it is my experience and observation that when it comes to illness and disability the total amount of NI you pay is simply pure dumb luck and has little to do with willingness to work or any other factor.

I will take myself as a prime example. I did pay NI for a period of 5 years. After this time my illness had progressed to such an extent that I had to give up work. After taking the dreaded WCA I was put into the support group of ESA (ie I am never expected to be able to work again and have unconditional support). But my illness could well have started 5 years earlier. In that case, with the best will in the world I would never have paid any NI at all. Conversely, it might have started 10 years later. In that case I would have paid 15 years NI instead of 5. In either situation I would have been no more or less “brave”, stronger or lesser willed or more or less eager to work. It would simply have been down to luck of the draw.

We do not think it right in principle that those who are assessed as able to undertake work related activity should be able to remain on contribution based ESA for an unlimited period. We have therefore decided to introduce a 1 year time limit (…).

This argument simply takes my breath away. ESA is an out of work benefit. Those in the WRAG (Work Related Activity Group) who are talked about here are those who are expected to be able to work again one day with the right support. That support takes the form of work related activity. Being able to do work related activity (which might be something like doing a few hours a week volunteer work, or a training course) is nothing like being able to hold down a job week in week out for 35 hours a week. So taking away the benefit and at the same time the very support which goes with it is both unfair and short sighted although admittedly lucrative for the government since it will save £30 per week. And let us not forget that these people have passed the stringent WCA and remain UNFIT FOR WORK!

Time limiting it to one year is saying that ANY illness or disability must be treatable or curable within one year. This is simply laughable. This policy is going to hit many very sick people including people with MS, recovering cancer patients and people with long term chronic illnesses. The issue has already been raised at prime ministers questions but Mr Cameron has been remarkably evasive as to how many people will be adversely affected. In fact, he seemed unaware of the difference between the categories of ESA.

I will be writing back to my MP and I urge all of you who can to do the same and to raise awareness of this issue. Although ESA will still be available on an income basis, the threshold will be so low that disabled people are about to become a financial burden on their loved ones, creating a very unequal relationship. I myself have already worked out that it would be financially unviable to get married!

Just remember, don’t get sick. If you do, you have a year before you have to get on your wheelchair and find a job!

Tuesday 16 August 2011

Electric Wheelchairs

Difficult to know where to start a blog. I think I will go with something which links both one of my most cherished possessions and a huge hidden problem recently highlighted by the plight of Broken of Britain disability campaigner Kaliya Franklin.

Two of my favourite possessions are my electric wheelchairs. One is called Roadrunner and is a wonderful outdoor/indoor wheelchair with full suspension, capable of a turn of speed of 6mph which means I can get places quickly which is vital given that a huge extra problem for me is fatigue and pain. However, while he is ideal for outdoors, going around indoors gives my doorposts and furniture reason to cringe in panic and so when my condition deteriorated to the point I needed a wheelchair indoors as well, I bought an indoor/outdoor wheelchair I call Rascal. This one can cope with going outdoors but is terribly bumpy and a tad slow. But indoors he comes into his own. Far smaller than his counterpart, he can pretty much turn on the spot and my furniture and paintwork were able to heave sighs of relief!

Now let's look at some boring but necessary facts. I can only walk about 10 yards and it hurts at that. I cannot push a manual wheelchair because, let's face it, my arms are just as rubbish as my legs! This means that even on a so called "good" day (read for this not stuck in bed) I can't get up my own garden path even with a manual wheelchair. It means that on a "bad" day (read for this might be able to slither from bed to wheelchair and from wheelchair to toilet if I really really must) I can't get from one room to another without an electric wheelchair.

Everyone always assumes that these wheelchairs are provided by the NHS. They are not. Despite the problems I've outlined above, I do not qualify for an electric wheelchair because I can "walk". The fact that I am housebound as a result for lack of a wheelchair does not seem to matter. Yet the government is banging on about disabled people going out to work and in their wisdom proposing that people should only be allowed to claim out of work disability benefit (ESA) for a year. I would like to know how one is to find work when they cannot leave the house for lack of a wheelchair?

Kaliya whom I mentioned in my opening paragraph is a prime example. Unable to push a manual wheelchair but needing a wheelchair outdoors she is turned down because she is only allowed one if she uses it full time. Add to that the fact that her accommodation is not accessible for an electric wheelchair (so she is turned down anyway for health and safety reasons) and there is no provision to move her to wheelchair accommodation and you start to see the scale of the issue.

And so the hapless disabled person is left to fund an electric wheelchair themselves privately at a cost of at least £1500 and going up to £5000 or more. I was "lucky" in that my condition is progressive. I knew approximately 2 years in advance that I would need an electric wheelchair. I was able to start putting money aside for it out of the mobility part of my DLA. But most people can't do that. A lot become disabled overnight. Others might be using the mobility part for motability. Others simply might not be able to afford to (I lived 2 minutes away from where I worked so had few transport costs).

There are two main things to take away from this:

1) Disabled people all over the country are prisoners in their homes. Freedom is a right. Being housebound due to your medical condition is one thing. Being housebound because you are being refused the right equipment is quite another. The only other people we confine to their homes are criminals.

2) If the government is going to insist that disabled people have a responsibility to go to work within a year, then they in turn have a responsibility to provide all the equipment they require well within that year.