Wow! What a week. Firstly, since my BBC breakfast appearance and more importantly the blog on the DLA consultation. General feedback from the ‘one month before heartbreak’ blogswarm has been positive. It received coverage on the following links, as only a starter and taster:

http://www.guardian.co.uk/commentisfree/2011/jan/18/disabled-protesters-one-month-before-heartbreak
http://www.goodaccessguide.co.uk/news/info.php?refnum=544
http://www.benefitsandwork.co.uk/news/latest-news/1285-protests-against-benefits-cuts
http://www.communitycare.co.uk/blogs/service-user-voice/2011/01/disabled-people-and-service-users-will-be-heard-we-will-be-listened-to-ombh.html#more
http://liberalconspiracy.org/2011/01/17/does-the-broken-of-britain-campaign-need-celebrity-support/

Thanks to Emma (TweetHandle: @funkyfairy22) for providing this information. Also Kaliya (TweetHandle: @Bendygirl) was on Talk Radio Europe speaking about Broken of Britain and the great campaign http://thebrokenofbritain.blogspot.com/2011/01/benefit-claimants-fight-back.html. Lets hope the government have taken note of this and reconsider their policy decisions around DLA next month, and indeed on disability issues generally!

In light of the recent cuts to government spending, we (Martyn Sibley of London and Richard Currie of Manchester) are writing to convey our deep concern at the affects they will have on the disabled people of the UK. We are only 2 of 10 million disabled people in Britain, but our views are by no means unique. This letter forms our contribution to a large online campaign – 1 month before heartbreak. Many people are blogging today to urge your good selves to consider aspects of the Disability Living Allowance and general disability reforms, and how they will truly work in the ‘real world’.

The DLA provides vital financial assistance for the extra costs incurred as a result of being disabled. The consultation is looking at tougher assessment criteria (to reduce the number of claimants) and even withdrawing the vital transport component of the allowance. It ends on 14^th February 2011. Furthermore there are discussions to disband the Independent Living Fund, assisting disabled people to live full, self directed lives. Please don’t break anyone’s heart on Valentines day. Or for that matter, ever!

We would like to start by acknowledging  the social, legal, economic, political and technological improvements of the past 50 years . With the social model of disability being enforced through laws and motions such as the Disability Discrimination Act and the UN convention , disabled people have seen vast improvements in societal inclusion. We both have had happy childhoods, met good friends, accessed our education system to Masters level and have ambitions the same as anyone. We personally strive for full independence using our electric wheelchairs, accessing social care provisions and using DLA for the extra costs we incur as disabled people.

As a positive recognition of the coalition government, we are glad you see the merits of Personalisation. The key here is that it may not be for everyone. With such a varying scale of impairments in the disability world, person centred plans are vital. Where possible, people should direct their own provision of services, giving them the flexibility, choice and control they deserve. When certain tasks and responsibilities are simply too much, this must be recognised and solved innovatively with brokerages and other support services. Really the crux of Personalisation is to improve disabled people’s lives, not to cut costs and corners. Please ensure there is enough money in the coffers. It is difficult to employ a PA to carry out care-work 24/7 under the minimum wage. Furthermore without the foundations of care in our lives how can we work, be financially sustainable, socially engage and be happy and healthy?

Unfortunately, even in 2011, this all has not resulted in full inclusion. Physically there are many buildings, transport links and leisure activities that are not accessible. Attitudinally many people still have cautious and incorrect views on disability. It is widely known bus and taxi drivers get agitated because a wheelchair user requires a ramp. Employers often feel concerned of disabled peoples’ ability to carry out a job, instead of assessing them on actual merit. We already need to improve a lot of things despite the progress made. So why make such regressive policy decisions?

With disabled people finding access to qualifications more difficult, trying to change attitudes and access to jobs in an already very difficult labour market, and having less disposable income because of the many extra costs incurred (more expensive travel methods, purchasing and repairs to necessary equipment, central heating costs, extra rent to provide space for PAs…), why slash DLA?

We know there are people claiming it who should not. We totally agree this should be stopped too. However is it the core reason our country is in debt? No. Is it fair that while stopping the fraudsters, people who really do need DLA are worried if they will keep it, worried how they will be assessed (we for one are not attempting to run on any machine to fall over and prove our disability), and others may not even bother applying when they ought to? No.

Furthermore, if you are to disband the Independent Living Fund, supporting 21,000 disabled people with their care needs, consider this. If local councils struggle to financially support 50% of our care now, how will they fill the void left from the ILF, when their overall budgets are being slashed as we write this?

The point is with so much positivity to celebrate, but with so much more to improve, why make decisions that will entrench disabled people back into poverty and exclusion? We say:

• Invest in disabled people with Personalisation social care, but for the right reasons. Listen to the challenges disabled people face, work with us to find solutions and be willing to fund this properly. In the long run, the spending and investment will lead to disabled people with better education, better skills for the workplace, better chance of being given employment (encourage remote working to become the norm when appropriate) and the means to live happy and fulfilled lives
• Acknowledge that DLA assists with the huge additional costs of being disabled – care and mobility. Stop anyone from claiming falsely, but in a way that doesn’t scare monger disabled people and doesn’t portray an image of lazy, slacking scroungers. Work with disabled people on the assessment methods and don’t break our hearts!
• Keep the ILF. Or at least find a plan to fill its void. One that will be effective. Do not cause unnecessary stress to those who rightly use it and will always require social care funding

Feel free to send any responses, thoughts or questions to martynsibley@hotmail.com and lets work together. The deficit can be cut and disabled people can be supported to live inclusively. They are not mutually exclusive occurrences.

Kindest regards.

Martyn and Richard

http://martynsibley.com/

http://thebrokenofbritain.blogspot.com/2011/01/more-one-month-before-heartbreak.html

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.

It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life.

Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.

So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?

At 12.30 the chancellor took to the floor and began. The next feeling I felt was confusion. The onslaught of self justifying comments and numbers almost made my head implode. I managed to stick with it and draw out some of the main points. It seemed from my need for broader decisions that local councils will see large cuts, employment is preferable over people on benefits, a green Britain is a hot agenda item, social care and personal budgets are not being cut, childrens tax credits are being withdrawn from higher income families and many other points were made.

To home in and analyse some areas close to me would be around social care. The announcement of not cutting any budgets and backing the personalisation agenda is good. The problem is this issue is not just on money but strategy. While the money is vital the government still need to look at where and how they spend it. Furthermore the right support is needed to maximise the benefits of the personalisation agenda. I hope this is seen through as a policy as much as a budget decision.

The general points of getting people into work also concerned me. How a person is assessed is a landmine, especially with individuals who have fluctuations in their impairment. Furthermore even if a disabled person is attempting to find work, they along with many employers only see barriers in the way. It is fine to aim for those well enough to work to do so, but it comes back to education and awareness to the public on facilitating disabled peoples inclusion. Lastly, how about those who really cannot work, despite the fact they may want to, but their disability prevents them. How must they feel about their government today insinuating many negative connotations on them?

The decision around anyone on benefits receiving no more than the average household. This sounds ‘fair’ but what about the fact that being disabled costs more. I need to buy expensive electric wheelchairs every 5 years, if I go on holiday I require an accessible vehicle which costs more and I have to buy more antibiotics in the winter with my chest infections. So if I did not work, earned the ‘average households’ income in benefits, but needed the above – is this fair?

A last fleeting thought was around transport changes and a greener Britain. I couldn’t see any real initiatives to improve the infrastructure for wheelchair users, more details may be needed. However with this green agenda, which I fully support, there is a flaw. Disabled people often cannot access public transport. I can only use 1 in 3 tube stops in my home city of London. So in not using public transport I have a carbon footprint (wheelprint if you like) higher than the average person. So all in all being a disabled person could make me feel a drain on public funds and like a polluting maniac.

Fortunately I know I am none of the above. I am also aware I am looking at the examples to highlight where the decisions today were wrong. The fact is the deficit does need reducing eventually and the decisions could have been worse. A governments worse constraint is that of being in power as they cannot please everyone. The reason I have sensationalised some of the above is  because it is easy to agree with their comments on stopping benefit cheats. The problem is how to stop them without mistakes and adding stress to those who genuinely do need support. There is 2 sides to every coin and I am trying to communicate the other side to Mr O.

I believe with a little investment in myself and other disabled people the future is less expensive and better for the economy. As a supported, happy and understood person I thrive. As an unsupported, unhappy and misunderstood person I am less healthy in body and mind. This costs more to the public purse. When governments realise investment in disabled people, job creation and infrastructure pays off in their own arenas, the deficit will be a problem solved in the longer run anyway, but with less pain on those who least deserve it.

My grandpa, absolute legend with technology, dug out these 3 newspaper cuttings at my request from many moons ago to enable me to write this blog (http://www.flickr.com/photos/martyn_sibley/sets/72157622856332857/). He is a legend as not many people of his age, let alone full-stop, could scan, save, upload and email this so perfectly. Thanks Gramps J

I’ll start with the picture of me in my new wheelchair pushing the football up the alley-way beside our old bungalow. This came off the back of everyone in my village and further afield hearing that I needed a new wheelchair costing £3,000 of which my parents didn’t happen to have lying around. I think this shows the fact that someone like myself requires more support than someone not disabled. Had I not had so many good friends and family I may never have got that chair and the confidence to get out and do it! It also shows how appreciative we were as a family to say thanks. I can remember being embarrassed at going in the newspaper and highlighting my disability. It was a necessary means. The same occurred when I needed funds towards my first adapted car which we achieved with many fundraising events.

I hope in this newer age that the government sees the longer term returns from investments in such capital equipment for disabled people. I have no doubt this, along with other support from the state and friends enabled me to be so included and able to complete my education, leading to employment. I urge policies to recognise this and for innovative solutions to arise in filling this void, not everyone has the networks seen in this article but with a small investment large untapped potential can be found. It’s a win win!

The second 2 articles, despite slightly blowing my own trumpet, show why I think people were happy to go to lengths to support me. These articles show when I swam for the British Heart Foundation (www.bhf.org.uk) – not so easy as I only swam with my arms. I raised good sponsorship money, had the then Prime Ministers wife Norma Major help me out the pool on regional TV and I won the cup for best achievement in the years fundraising. This was not a publicity stunt to raise the money mentioned previously but my wanting to do something for someone else and show just because I take sometimes, I can give to. I remember it took bloody ages to do the swim but was a big personal achievement. I hope in a different way some of my blogs will make a difference, large or small, to other people. I have also done some fun videos on www.martynsibley.com to keep things light hearted!

Overall this trait is less about social investment but personal goals. I cannot decide government policies but I can live my life in a way I think is right. By passing on knowledge and experience I take satisfaction while I hope it does encourage others to do what is in their heart. All too often disability can be a negative viewpoint on the cannots. This is counterproductive and how ever many barriers someone faces, complaining will not help. So as mentioned before, go for your goals but also give back to others as well. It feels good and karma may throw you a curve ball too.

As the Dalia Lama said “It is very important to generate a good attitude, a good heart, as much as possible. From this, happiness in both the short term and the long term for both yourself and others will come.” (www.dalailama.com).