One month before heartbreak

Dear all elected officials and decision makers (at a national and local level)

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 14th 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 [email protected] 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


  1. Its true, I agree, I am one of those guys who’s worried about it all, is the DLA gonna be cut on 14th of Feb, countrywide?

  2. hi Martyn,
    sorry not to have responded sooner didn’t remember where I had left this. I will suggest Jason reply himself with one of his personal assistants as I am sure he would not wish his mother to do it with or for him, in fact I know he wouldn[t. I can however say that the alternatives to funding for independence are not an option and being stuck in a care home would quite literally kill him and I could never lay that sort of thing on him anyway.

    It strikes me that so many people with disabilities feel the need to join in the idea that things should be done so they can take part in the work place. That is fine for those that can but there are others who possibly will never find themselves in that position. However, many disabled people who use their DLA and their ILF to employ others are contributing to the taxes needed to support services etc. Without these many personal assistants would be without work, companies who make and sell products would not longer be able to survive, there exists a huge industry around disability. Disabled people indirectly contribute massively to employment in both public and private sectors. I feel this should also be pointed out when those with little understanding talk of how much disabled people are costing society!

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