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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.
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