Thursday, 27 April 2006

Adding up

Its too late to be starting a blog (I should be asleep) but I have been catching up with the week all day, and tomorrow I have to start on tomorrow's list, to finish before the weekend, before the start of my two/three 'down' days due to weekly drugs, (after which I have to do the equivalent of rebooting a computer with my cogdysfunck'd brain) and then another week begins, with another week's lists of things that ought to be accomplished.

Today, no electricity in the village, off for eight hours so that a Larch, higher than any houses around, could be safely taken down without electrocuting the workers on the overhead wires. The starlings will miss it, there was room for a least a hundred in its twiggy branches. In the summer it was a nursery for that season's new birds on the block. No electricity I can cope with no problem, but not the noise of chainsaws and branch chipping machines, so I have been away from the house all day, with no restorative sojourns in my reclining chair, on the bed or in the garden.

Today the Optician did not bend to my pleading of poverty as much as I hoped, but a 30% discount is something for being a loyal customer who has ordered three pairs in as many months - I am not the only person with Meniere's Syndrome who cannot manage varifocal lenses. Yesterday the IBM man on his final visit finally sorted my laptop AND popped down to Tesco to get me some more discs ... bless him, how could he say 'no' when I explained that my home help would throw a wobbly if I put CD/RW 48x on my weekly groceries list. I don't 'do' Tesco anymore, something to do with their lights and my Lupus and/or Meniere's. Waitrose, in this respect also, is superior but a close-by one is not due to be built until next year.

Tomorrow is pay day for my Staff, who I employ under the Direct Payments Scheme from Social Services. So I have to get my brain in gear early, to make sure I write cheques that match the payslips produced by the accountant, before I leave for ...

Rheumatology department and the lovely Dr R, to explain to her again that I don't drink alcohol, its the drugs that keep the Lupus in check that are messing up my liver function. No one has offered me champagne for at least three months.

Adding up - I don't anymore, I have an accountant to enable me to use Direct Payments, much in the same way as I have an electric wheelchair as I don't self-propel, due to Lupus muscle and joint pain and weakness.

Don't you just lurve Direct Payments from Social Services - explanation follows for those who would like to try it. Social Services give me, the service user, a budget to buy services for my assessed home/day care, which costs Social Services roughly half what it would to send in their own staff. When I did receive care services I had no choice who came into my home, and initially they sent 16 different home helps in 18 weeks. Not good. My care manager and I agreed that the local day centre wasn't quite what I needed !! Day centres are not at all what many people need.

For me, the Direct Payments scheme means I choose who I work with, fine in theory, but in practice the best home help I had left me with a glowing reference in order to work for social services. Only one applicant to the advert for her replacement, so not much choice in reality. I now have two home helps, half a week each, and two personal assistants, on ad hoc contracts. With my PA I do concerts, 'walks', exhibitions, and gardening. A bit like a 'husband' someone once observed irritatingly. Employing a PA beats a day care centre any day of the week.

For Social Services department, service users opting for Direct Payments means, in theory at least, that they can provide care services to twice as many service users. Or cut their budget in half. The service user does all the work; recruiting, police checking, contracting, insuring, training, administering, supervising, paying. The costs to the service user of doing this (paper, ink, quill pen/laptop, filing cabinet, phone calls, postage) should be provided for as expenses. 'Expenses' also includes, accordingly to my rules of engagement, contracting an accountant to process the payroll and keep the Inland Revenue people happy. I await my annual review with Social Services finance department to see how much of that they accept.

However, keeping internal financial records for Social Services is something I can no longer do with confidence, as often, but not all the time, I cannot add up. I loose that ability temporarily. I have spent my life being able to add up, beginning with my fingers and toes, and progressing to small company and parish council accounts together with burial ground accounts (and putting the little crosses in the ground according the to map, to tell the grave digger where to dig !). Now my cognitive dysfunction means I cannot always follow the processes needed to keep account of things, and although 1 + 2 still = 3, sometimes the processing goes awry, resulting in 1 + (which line am I on) 2 (I thought I had done that already) = (have I done the first bit first, or the second bit third) = 3, or 2, or 5.

Therefore my accountant has produced a pretty coloured spreadsheet for me to keep my DP accounts on, and he fills it in when I can't. I wait and see what Social Services's annual review makes of that innovation.

I don't need an accountant to do Sudoku, because as I explained to a friend with mild Tourette's Sydrome, and offered an explanation to a blogger, its not about adding up. That is not obvious in the instructions. So for me Sudoku is a useful test of my brain's ability to follow a process, to assess if the weekly drug dose has yet cleared my system.

Adding it all up, life in disability for me, is o.k. Listed on the credit side is the fact I no longer have to work 9-5 Monday to Friday, which I did for years as a single parent, which was hard. So now I choose what to do with my time. My income although tight is secure. My home is my own. On the debit side is worry about coping with future progressive disability, and coping with society's dis-abling attitudes and the built environment on a daily basis. The balance at the end is in my favour, for now.

I know it is not as positive as that for many disabled people. To help where I can, I write about it and blog about it. I volunteer my help wherever it is asked for. I cannot do sums, but I can explain how I have manage my life in disabilities. I can also counsel, encourage and support. That is how I earn my living, my place in society, using my skills and repaying my dependence on state benefits, for so long as I am able to.


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