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An Anonymous IB Claimant Tells The Guardian They Are Scared

June 30, 2010

Multi-organ failure left me disabled but I am afraid that the government’s plans to slash the welfare bill coupled with ‘efficiency savings’ at my council could leave me with no support

The government’s plans to cut the welfare bill by taking as many people as possible off incapacity benefits might be reassuring for the financial markets but for me is a disaster.

Let me explain. Some years ago I had multi-organ failure that resulted in brain damage. This left me with no sense of balance – it means I cannot walk without an aid and even when I do I walk painfully slowly. My fine motor skills – the ones that allow your fingers to do things with precision – are totally devoid, and my voice, if it sounded vaguely intelligible it would be an improvement.

I am on the highest rate of disability living allowance, thanks in no small part to my welfare rights adviser, who is fearful of his own job security. He has, after a prolonged battle, successfully argued that I don’t need to attend job interviews or the harsh new employment and support allowance (ESA) medical interviews to assess my capability to work (which have been discredited in a report by Citizens Advice and leading disability advocacy charities).

Incapacity benefit was replaced by ESA in 2008. Less than 10% of claimants now receive the higher rate of ESA, for those deemed genuinely unfit for work. After a battle, I am one of the few on the higher “support” rate. The test is so harsh I hear it is forcing people to attend job interviews, with the threat of their benefit being cut altogether if they don’t (or can’t) look for work. And now the government is intending a further crackdown.

Recently, I have finally got the rehabilitation help I need, thanks to my new “personalisation” budget – of which I am one of the first recipients and a test case.

This rehab care is the kind where I am helped to regain lost skills, practise speech exercises and the carers are prepared to take risks and help me walk about rather than just do the bare minimum domestic duties such as cooking and washing. I received this rehab funding primarily because my neurological consultant considered it so important to my rehabilitation. He wrote a letter to the awarding panel explaining that I needed specialist support workers trained in brain injury for half of my care. I previously had one – risk adverse – agency providing all of my care.

In my experience, many carers do not seem to have received any specialist training and their main concern seems to be with signing the book so they get paid. When I would go for a shower they were under strict instructions: if I were to fall, watch me fall rather than risk injuring themselves.

When my case went before the adjudication panel the local authority funded the extra hours of specialist care on the understanding that the Independent Living Fund (ILF), a centrally funded body, would make up the shortfall and eventually fund all the specialist care, leaving the local authority with only the domestic care to pay for. Ultimately, then, the local authority would save money. But now I am told that the ILF has rejected my claim outright.

The ILF has run out of money. Only three months into the financial year it has closed its books to all new claims regardless of need.

Now I am afraid that the local authority, in order to meet “efficiency savings”, will attempt to return me to my previous inept care provider. I have just received a phone call today from social services asking me to call them back. Obviously, they have heard about the ILF. My funding, which has only been in place for a couple of months, is now seriously in jeopardy.

I had a job. I was very good at it. I was a manager working in the health service. I was responsible for a team of staff and volunteers.

I miss feeling useful and making a contribution at work and, above all, I miss the interaction with other people. Instead of a carefree life I have only concerns. Instead of a future I have only a past. I miss the spontaneity and the laughter of my old life. The frustration of sounding like a robot who has learned to speak English from a badly-translated guide makes me lose all sense of motivation. Mainly, my days are spent doing repetitive exercises and trying to write short stories on the computer, but typing is painfully slow due to a lack of fine motor skills.

Having struggled through the labyrinth to get benefits, I am scared of the further, even more difficult medical assessments that the proposed cuts might mean. And I am scared of having my benefits cut. The welfare budget is to be slashed and I fear that the trapdoor is already underneath me.

• The contributor has requested anonymity.

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