I read a disabled bloggers account in the Huffington Post today of the financial hardship disabled people face (Financial Burden of Ill Health). As I indicated the other day, I would give an update on how my reassessed care package is working out for me, as it's directly the cause, along with the bedroom tax, of depriving me of disability income meant to fund all kinds of things as Elaine Benton points to in her article.
I won't go to much into the process of what happened during the care assessment which lasted 6 months in total, but you can read about that here. I already paid £3000 per year out of my ESA and DLA benefits for the care I received. Then last year I was told my LA no longer fund almost everything my carers do for me, so I was told to use my DLA to fund those things; as I said to them, they already clawed back most of my DLA as it was.
The upshot of this is that along with bedroom tax and the extra care I've had to buy I'm paying £5900 per year. I have no assets or savings. My standard of living therefore has dropped like a stone. I can no longer afford to pay for taxis to regularly see my family and friends or to attend a social event; it's now a rare occurrence. Cruelly, the LA gave me 'socialisation' hours where carers could accompany me, but removed the activity budget, so really there was no point. They pay out for these hours each week; these hours can be used in a financial way to pay for an activity, but they won't allow me to use them for that, which doesn't make sense, as they still have to pay for it!
DLA is supposed to fund things like equipment, equipment repairs, specialist diets, extra fuel costs and so on, not just the care aspect. The way they've got around this is to say they don't fund certain things. They're not allowed to take DLA mobility into consideration as income when working out your contribution to your care. Nonetheless, I've had to use this to pay for the extra care.
I now have to cover one carer's mileage, the other carers' bus fares, shopping and errand running time, ironing as it's considered cleaning, brushing the path (that becomes clogged with leaves in the winter and is dangerous) as it's considered gardening, and no cleaning at all (not that I ever abused this in the care plan) apart from 'hygienically wiping down work tops'.
Imagine what £5900 a year could do for your standard of living. I'm never going to get better therefore I need a standard of living that allows me to have things to look forward to and little treats. You might say that it is unacceptable, but really, are we now saying that disabled people should just stay at home out of sight and be thankful that they have a roof and food? Don't get me wrong, I'm thankful for what I have, and due to careful budgeting, I do still have enough for the occasional treat. But, what is the point in giving disabled people a reasonable income, if they then claw back more than half of that? Really, they may as well not have given me DLA and Severe Disability Premium at all!
What I don't have now is the ability to save any significant amounts to go towards the things I mentioned above. My washing machine is about to conk, and I really need other equipment, but I cannot save that much now. Luckily I have a good family, so for example this week they've brought me new batteries for my indoor electric wheelchair, and other things. If it wasn't for them, I'd be in a real pickle. I would have saved and bought the batteries, but that usually means going without something else. How to people manage who have no one?
As Elaine Benton mentions, disabled people face so much bureaucracy that it's overwhelming at times. I've had an care audit in January, then I had to fill in an ESA questionnaire for reassessment, the I had a 'performance measurement' visit from the DWP to prove who I was, soon I have a financial reassessment, then I'll have the ESA assessment, then in July my care assessment starts all over again.
It's seems like a constant stream of putting documents in order for the various authorities, along with regular visits to G.P.s to request letters of support. It's like this whole life is focused on justifying the support you receive for your disability. What a life when you're already chronically disabled and it's hard to just get through each day.
It's a living nightmare; no wonder so many people, unable to take the pressure any more, decide they've had enough. We are not only humiliated on a regular basis, but left financially vulnerable. Soon, those appealing ESA decisions will have to go through a 'reconsideration period' before they're allowed to appeal, and during that period they will receive NO ESA; they will only receive it when they are allowed to lodge their appeal.
As if life wasn't bad enough, seriously sick people are worrying themselves to death over the prospect of a period each year without income (which won't be back paid).
How does someone live without an income? I have already researched this and intend to address it in a later blog.
Really, we just want to be left alone to cope with our illness, not forced to jump through continual hoops.