My housing benefit has never covered the entire cost of my rent. I have never yet been offered a council property which suits my needs. Taken together these two facts add up to my being "rent poor" for my entire adult life, whether fit enough to work or not. This has knock-on effects. There is a huge catch 22 going on between my care needs, my benefits, social services and housing benefit.
I currently receive lower rate care. I survive with minimal care provided by two volunteers who help me out of the kindness of their hearts. I can't (always) dress myself, cook for myself, clean my own house, bathe myself, manage my medication, my financial transactions or even have a bath without help. I sometimes need help to get to the loo at night, which means that my carers need to stay over. I have reported these facts more than once, have medical evidence which back these claims up. My care needs fluctuate; on my worst days I'm bed-bound, normally I'm housebound. Because I survive with the level of care I'm currently receiving, DLA say I don't qualify for higher rate care. Because I don't qualify for higher rate care, I don't qualify for any help financially towards my "spare" room which my carers sleep in. Because I don't qualify for higher rate care I don't qualify for social services help. Because I don't qualify for social services help, I have to survive on the help I have, which DLA says means I don't qualify for higher rate care.
This means I don't get regular hot meals, regular hot drinks, and I sometimes have to sleep downstairs so that I can make to to the loo. I often sleep in my clothes and it can be up to a week between baths. If I actually had the amount per week coming in that the law says I need to live on I might be able to afford to get someone in privately to help me, but no. I'm short £12 a week. Even if the 'bedroom tax' is abolished, I'll still be in the same position.
The thing is that I don't want to simply survive; shouldn't I be allowed to live at least a little? One hot meal a day and a bath every second day? Clean clothes and the ability to get to a loo when I need one? Why yes, I could use a commode, but how would I empty it? It would have to sit there stinking for up to a week until one of my volunteers came in and emptied it - but that's the only practical solution to any of these care issues that either I or my carers have come up with.
This is the reality of my life in the lap of luxury on benefits. You want my ability to"laze around in bed all day?" You can have it, and bloody welcome, as long as you take my disability too.
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