If The #NHS Won't Buy Kali A New Wheelchair...We Will!

Once again my fantastic neighbours have come to the rescue and solved the dilemma of how to fundraise whilst being on means tested benefits by setting up a paypal account themselves. This means the money doesn't have to go through my bank account and avoids any potential issues with the DWP as the wheelchair is then a gift.

So, on March 17th there will be a fundraising gig at Panache in Hoylake which has it's own facebook page here. There's all sorts of background information about why I need an electric wheelchair and why I don't meet the NHS criteria here, here, here and here. The gig is open to anyone who wants to attend and I'm getting quite excited about the idea of being well enough to actually go out for an evening...the last time I can recall being sometime in October last year...

The best 'guesstimate' I could get for the price of a customised wheelchair is approximately £6000. As it's a guesstimate I might be lucky and find it's only £5000 but equally it could potentially be £10,000 - I won't know until the full assessment on the 5th of March. Whilst there are cheaper electric wheelchairs available, £2000 odd isn't a cheap option, so I've decided its better to wait until I can afford a more expensive customised chair which will hopefully last me many years, instead of a cheaper chair I'd need to replace within a couple.

For the record, I hate having to do this - asking other people for money to fund a wheelchair feels like begging. Its humiliating and embarrassing. That's why my community stepping in to organise this is so wonderful, not only does it reduce the practical burden on me, but the emotional too. So, if any of you would like to help contribute, you'll have my thanks and eternal gratitude for being part of a whole group of people helping me to focus on increased independence, not continued dependence.






Brandon Trust's Feb Newsletter

 Brandon Trust's newsletter, including article from their ambassador, yours truly..

"It’s a very turbulent time for people with disabilities. I like the word turbulent: it’s one of those words that, as you say it, you can imagine what it means from the shape you have to make with your mouth: Tur – bu – lent. Try it. You can feel it’s all up and down, and it needs lots of strength to get the sound right. We can tell turbulent means moving around in quite a forceful way, which is how life feels for people with disabilities at the moment...."
 

Big Society Bureaucracy

As anyone who follows my blog or twitter already knows...I have the most amazing neighbours ever! There's a pile of crockery sitting on top of my microwave as I type, the different patterns showing just how many people have pitched in to help while I've been so poorly this winter. One lady had already declared her intention to run a 10k later this year and help fundraise towards my wheelchair, and now others are organising a fundraising gig to be held in a local bar on March 17th. Knowing me well, the person setting up the gig even made sure to tell me I didn't have to go if I didn't feel well enough! We're the kind of community that Cameron has tried so hard to define with his 'big society' and failed to do so. Which is perhaps partly because it's micro communities not big societies which work in this way. But I digress into rambling. Again. 

So, we've got the venue, the talent, the organisation, and the gig is good to go. Where we've stalled is the financial practicalities. It's not possible to use sites like justgiving without being linked to a registered charity to receive the money. It's also not possible for me to have the money put directly into my bank account because I'm in receipt of means tested benefits. So, I tried to get in touch with the DWP to see how to do this officially as it is technically possible to receive money for a specific purpose such as this without it being considered income. Technically, as I can't find anyone who actually knows how to do this.

First I tried the DWP Press Office on twitter. They didn't reply. So then I tried the local Jobcentre department who oversee income support. They didn't have a clue, which is understandable as it's far from a routine enquiry. After that I thought to try my Disability Employment Advisor. She didn't know either, but was able to tell me that the Income Support department had tried to contact me to say they didn't know...and made a note on my file which said 'treat as income'. I'm not thinking about the possibility of that note triggering a benefits investigation, particularly as I've already just been through a benefits investigation*. After a more in depth conversation with the DEA we decided the best thing to do would be for me to write to the DWP explaining the fundraising and copy my DEA into the letter because then if there were any problems later on I would know where a record of the letter had been filed.

So theoretically, all I have to do now is set up a paypal account to receive the funds. Except...this is the DWP, I'm on means tested benefits and I'm not confident with that uncertainty. I don't want to accidentally do something wrong then find out later when it's too late that it's classed as benefit fraud. I just want my wheelchair and to be able to enjoy how amazing it is that my community want to help support me in this way.

One suggestion was that the wheelchair appeal itself could be set up as a registered charity. I'm not sure whether such an appeal would satisfy the charitable requirements, but I do know how much work is involved in setting up a charity, and that I don't have the time or energy to do that. Another suggestion has been to find an established charity who are willing to have all the fundraising money donated directly to them and then pay for the wheelchair themselves. I'm not sure whether that would satisfy the charities accountants terribly well either.

So, I'm a bit stuck. I know the wheelchair will cost somewhere in the region of £6000. I have all this incredible support to help me raise that money....and so far nowhere I can send that money to be donated without possibly accidentally committing benefit fraud. This is where hopefully the collective knowledge of t'interwebs comes in... I'm hoping one of my readers might know exactly which form I have to fill in to let the DWP know that this money is for disabled specific stuff and not income, or what the DWP call this so the local jobcentre staff know what to look up on their computers. Or perhaps there's another way that this kind of fundraising can be done...

If anyone wants to come to the gig, I'll make sure details go up soon as available, but for now a preview to whet your appetite.



*which showed, unsurprisingly, that I'm claiming all my benefits genuinely, legitemately and not doing anything wrong.

Something Inside So Strong #wrb

 

It's an important day for welfare reform, the highly contentious Welfare Reform Bill returns to the House of Lords this afternoon after the government chose to apply financial privilege to the amendments the Peers had so carefully considered. Sue has been trying to explain what this might or might not mean for the Welfare Reform Bill so I wanted to look at what it means for our community.

Whether or not the Welfare Reform Bill continues to be amended, the campaign against it has been a huge success. For the first time in decades there is a tangible and determined disability rights movement emerging in the UK, forging strong links with other disabled peoples' movements around the world. Prior to the 2010 election there were only a handful of disabled bloggers trying to alert the rest of our community to the potential problems we were facing. So unknown and unheard were our voices that in September 2010 the Financial Times confidently declared that cuts to disability benefits would be the "easiest bit of welfare reform to sell", something the Coalition government were undoubtedly banking upon to avoid proper scrutiny of the WRB, based entirely upon ideological principles and an astonishing lack of detail.

Without resources or training, those with the least time and energy to give have been those who've given the most. We have pooled our skills and put aside our differences to emerge as a cohesive movement. Groups such as The Broken of Britain moderately focusing on how to use old and new forms of media as a campaign tool, Black Triangle taking a more feisty approach in dealing with the private sector elements of the welfare process, and Disabled People Against Cuts organising a daring and powerful act of civil disobedience. Having learnt from the successes and mistakes of disability rights icons such as Vic Finkelstein and Jane Campbell we have looked ahead, whilst ensuring we never forget to look over our shoulders and ensure that no group of sick or disabled people are left behind. We have worked closely with Carers, made sure that there is appropriate information available for those with learning difficulties and ensured support networks for those with mental health issues, understanding that our strength lies in our acceptance of our diversity and difference as disabled people, regardless of the reason for that disability.

Whatever happens with the parliamentary process this new disabled peoples' movement will continue. We have had one stunning victory, and that is changing the nature of the debate surrounding welfare from an almost universal assumption of scrounging to a gradual awakening of the potential dangers inherent in labelling one group of humans as less worthy than another. Some of the more heated debates, particularly online have fundamentally misunderstood this point, made so eloquently by people such as Rabbi Debbie Young-Somers and David Cameron's former speech writer Ian Birrell - the warnings of apartheid and potential fascism are not because a government wanted to cut some money from the welfare bill. They are because of the dialogue introduced to the public by the previous New Labour government and ramped up by a Coalition government dominated by inexperienced politicians. A dialogue which, without evidence to support its arguments rebrands the most vulnerable; the poor, the sick, the single parents, the carers, the disabled as being drains on society, unworthy of support and insinuates the idea that these people are somehow to blame for the wider economic challenges we face into the national consciousness. A dialogue so insiduous that less than two years after the Coalition came to power there are deeply disturbing increases in the level and nature of hate crimes against disabled people.

As a campaigner I understood long ago that we would lose the battle of the Welfare Reform Bill, but that did not mean we would lose the wider war. There are many problems with the details in the bill and potentially vastly more expensive benefit traps being created by it as those who drafted it had a remit to cut money quickly, not consider the long term consequences or complexities faced by those dependent upon benefits. However, the real war is to attack the damage which has been done to the identity and rights of sick and disabled people in the past two years, which threatens not just to undo all the progress towards equality made in the previous forty years, but to embed apartheid into the British consciousness.

And for those of us digging in to fight that wider war, there is just this to say to the government.

You may be Goliath, but we are David and working together we can and will be the slingshot and pebble.

Disability News Round Up By John Pring - Week Ending 10/02/2012


  • Coalition MPs who play leading roles in disability-related parliamentary groups – but still voted to slash disabled people’s benefits – have been accused of hypocrisy.
  • Disabled peers believe they could still help to secure improvements to the welfare reform bill, despite their anger and frustration with the government over how it has handled the legislation.
  • One in five disabled people’s organisations in London faces closure in the next year because of cuts to their funding, according to a new report.
  • Work and pensions ministers have been told that their rhetoric on disability benefits is fuelling an atmosphere of hatred and hostility towards disabled people.
  • Colourful public murals that show disabled people’s hopes and joys, as well as the continuing barriers they face in their lives, are being unveiled across the country.
  • The Supreme Court has been hearing a “landmark” community care case that could have huge implications for disabled people who receive support from their local council.
  • The Office of Fair Trading has taken action against a leading stairlift company following a study into “unfair business practices” across the mobility aids market.
  • Disabled campaigners have welcomed the decision to reverse some of the cuts to station staff made last year by the body that runs London’s tube network.
  • Lawyers and Deaf and disabled people’s organisations have come together to find new ways of using the legal system to defend disabled people’s rights, inclusion and quality of life against public sector cuts.
  • The government must take action to close the widening gap between the care and support needs of disabled and older people, and the funds available to meet those needs, according to an influential committee of MPs.

For links to the full stories, please visit Disability News Service
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