Why We Can't Grin and Bear It Any Longer #spartacusstories #spartacusreport

I am a carer. I look after my wife, who has had ME/CFS since August 2009 and has had some sort of disability since birth. She currently claims Disability Living Allowance (at higher care, lower mobility), Income Support (shared with myself), Local Housing Allowance and Council Tax Benefit. She has never been able to work beyond an attempt at a paper round in her teenage years which she had to give up, due to it making her ill. She requires a great deal of care – and this is where I come in. I push her to college 4 days a week – this involves 6 hours of travelling a day if everything runs on time, which it often does not. I help her with getting washed and dressed each day. I do the housework and ensure that she eats every day, as she requires prompting to do so and is unable to stand in order to cook. I take her to doctors appointments and pick up her prescriptions as well as doing a great deal of the household shopping. I contact various people on her behalf, as she has difficulties with communication – she is totally unable to use the telephone. She requires company pretty much all the time and I am also there to provide that.

As you can probably tell, she needs a lot of help. Because this amount of help leaves me totally unable to work I claim Carer’s Allowance and am on my wife’s claim for Income Support. The Government pay me £53.90 in Carer’s Allowance – considering that the minimum amount of hours that I must care for my wife a week is 35, the Government is currently getting a very cheap service. If a private carer were here instead of me, it would be much more expensive.

I am incredibly worried about the benefits shakeup that is most likely going to happen. The Government wants to scrap Disability Living Allowance and replace it with a “Personal Independence Payment” that would be far harder to claim than the current DLA – a benefit which has a fraud rate of just 0.5% and empowers disabled people to do things that they wouldn’t be able to without it. The Government want to get 25% of all people on DLA off it. The numbers do not add up at all.

As for Income Support, it is pretty much guaranteed that the Government will want to transfer the Income Support claim over to Employment Support Allowance. This would require frequent medicals. My wife has massive travel problems – buses make her panic and I am currently unable to drive. This would make getting to any medicals incredibly stressful and could lead to her becoming depressed again, something which she has not had to cope with since early last year.

If my wife does not successfully claim the Personal Independence Payment for whatever reason, my Carer’s Allowance will most likely get stopped.  This will force me to look for work, leaving nobody at home to do the caring. My wife has tried living semi-independently in  the past and this did not work, so the most likely outcome would be her having to move into a care home or similar institution. The Government want couples to be living together and them taking away my wife’s benefits would lead to that not being the case, not to mention not being able to afford the care home if they were taken away.

Needless to say, I am really worried about what the next month will bring and I call to any other carers, whether they are in my position or not, to make your stories known. People with disabilities are people too, they cannot be thrown aside because the Government wants to save money. We cannot just take any changes the Government want to bring in without a fight. We have to take a stand, not just for the people we know but for all disabled people.

This post was originally available here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011