Sunday, 24 September 2006

That Was The Week That Was - or - Where There's A Will, There's a Way

WTAWTAW - Part One (Where There is Not a Will):

Before I submit to the Neuro-Surgeon's cheese planner (no advice yet on when) I have to do what I should have done years ago: provide for my Bump; not just her inheritance but also make it straightforward for her, as her life is also limited by illness. So, one of the many things I have been working on these last few weeks, is finding a Solicitor to write my Will, or rather, funding a Solicitor.

I have no money beyond my immediate needs - nothing new for dis-abled people in this welfare state but thinking logically I knew there must be a solution to this problem somewhere. If my disability results in no money, my disability should not prevent me accessing legal help, whether or not I in my wheelchair can access the solicitors' chambers. I knew there had to be a way - I just had to find it.

(By the way, another way of finding funds to fund a disabled life, is by applications to charities . In this way I have funded an electric wheelchair for legs that don't work very well, an electric tumble dryer for wet days that don't dry the laundry very well and an electric dishwasher, so that Social Services don't have to provide a washer-up.)

The wonderful web told me it was possible to fund a legal will, through the sites of the Citizens Advice Bureaux , the Community Legal Service and the Legal Services Commission. So UK readers, if you are disabled or you have a disabled dependant, and if you are dependent on means tested benefits, you are entitled to free legal help for will writing. Straightforward. All I had to do then was persuade a firm of solicitors that: Yes, your firm is listed but: No, I do not have to pay your fees. You are funded by the LSC to provide this legal service free to me. I had to do some gentle polite persuading, point them to the web site, show them where they are listed, then step back and let them recover their superior composure and offer their service to me.

I also had to find Executors who would be able to deal with my ex; he who would be waiting in the wings ready to jump in and manipulate my bump's life if I was no longer around to fill the post of protector. It is the case that a (very) high earning solipsistic father sees no irony in our state of state dependency while he earns fees advising clients how to provide for their own offspring in the administration of their estates and trusts. So thank you those friends and relatives who, knowing what a pile of poo he is, are nonetheless willing to take on that responsibility, for my bump's sake and for the sake of my peace of mind.

I think this is an indicator of arriving at that state of being a 'Grown Up' - using time and energy now in planning for the future, when that future is unknown. But then I think, I am not doing this purely selflessly; in doing this, it is one less thing in the back ground using up my energy worrying about it.

Sometime, I just want to be looked after. Sometimes I just want the professionals, who are paid to be professional, to do their job pro-actively without the need for my limited energy being used; first to research, then to tell them, what they should be doing.


I do not mind being the one to tell/suggest to my medical professionals, what might be the problem, what might be the solution, what we might consider doing. This, to my mind, is being an equal stakeholder in the management of my health and there is a willingness on their part; so we find a way to do it and it has worked well for a number of years. I am blessed by having two wonderful ladies as GP and Rheumatologist.

So, reading up on my various drug patient information sheets and Lupus management publications, I took the initiative and asked the Rheumatologist whether it was wise to repeat some tests for aspects of Systemic Lupus that I did not have when initially diagnosed, in case I have developed them, which would be a suprise to the post-operative medics if I did not recover from surgery as they expected. Best be prepared. So that will be seven phials of blood taken next time I submit to the extracting needle.

WTAWTAW Part Three:

I am now an equal stakeholder in the provision of disabled facilities and adaptations to my home. I have not previously been an equal stakeholder, despite various central government pronoucements over the years which have decreed that a disabled person should have an equal, and equally respected, say in what is provided for their needs. It is a fact that a paternalisitc attitude permeates social care provision, particularly where grants are dispensed. So it has been difficult for me to take on that status granted all disabled people by the Department of Health's 'Fair Access to Care Services: Guidance on Eligibility Criteria for Adult Social Care', when I had to educate the professionals at County Hall just what that criteria meant to the way they dealt with me.

All is now about to change and the logic of law has come to my aid. And it came about thus: to save money, the local authority (County and/or District council) have contracted with an outside organisation to manage and administer disabled facilities and adaptations. That organisation, lets call it 'AdaptaCrip' (just for fun, not its real name!), is professional, has no historical burden of paternalism to conquer, and enters into a contract with the person needing the disabled facilities and adaptations. The repercussions of the fact of this legally binding contract on the stance of Social Services, was wonderful to behold at the meeting at my home last week, sat around my dining table. I was empowered by AdaptaCrip explaining to Social Services that their contract was with me, and that now social services are just a funding provider who they would deal with on my behalf. To the spluttered protestations from Social Services defending their right to control my life, AdaptaCrip patiently explained their own position in this contract, and the position of Social Services, and my position - the supreme stakeholder. Now, lets see if it works. Where there's a willingness, there is usually to be found, a Way.


Blogger The Goldfish said...

Being a morbid sort, I wrote my first will when I was nineteen years old. Not with a solicitor, but it was properly worded and witnessed. The thing is to avoid a situation where anyone may have cause to speculate about what your wishes might have been. Shame we can't do the same about those times in life when we are unconscious or otherwise incapacitated to let our wishes be known...

Great news (fingers crossed) about the care arrangements. Hope that works out better than past experiences.

Sunday, 24 September 2006 at 22:00:00 BST  
Blogger Charlesdawson said...

Well done, Sally! Just a word of caution : you need to remain close to AdaptaCrip at all times, just in case one of them innocently takes SS at their own evaluation and turns to them rather than you for information and instructions.

No, I'm not speaking from experience of AdaptaCrip, but from experience of SS. Some of them find it hard to let go.

Monday, 25 September 2006 at 11:47:00 BST  
Blogger BloggingMone said...

The approach by AdaptaCrip seems reasonable, I hope it works. Having your house adopted to suit your needs is a legal right and you are the expert to decide on what would be working best for you. There is absolutely no need for those, who have to provide a certain service or the money to act up as if you have been selling your brain. Makes me jump off my skin....

Monday, 25 September 2006 at 20:01:00 BST  
Blogger BloggingMone said...

Goldfish, I have, with the assitance of my GP, written a so called patient's injunction. It is written to state my will on what I would like to happen when I am unconscious or otherwise unable to state my will. It clearly points out that I do not want to be reanimated or kept alive by machines, when my brainfunctions are too limited to ever get back to a decent life and things like that. It also clearly states that I am willing to donate any working organs to those who may need it. I know that my mother would go ballistic if that point would have to be discussed with my husband, because I never made a proper statement. All of these injunctions are send to a register and whenever a patient is in a life threatening condition, hospitals are required to ask if that person has left his/her will at the register. Maybe there is a similar service available in Britain?

Thursday, 28 September 2006 at 10:52:00 BST  
Blogger Sally's Life said...

Sorry I have not kept up with comments, and am late publishing BM's last helpful comment.

Goldfish - not morbid, very sensible !

Charles - Indeed, on the one hand they find it hard to let go of control - but on the other they are happy to push the work of organising onto me.

B Mone - very helpful your second comment. I think over here it is called 'Expression of Wish' but I don't know its legal standing.

Any disabled person can ask a Solicitor to visit them at their home if they are not well enough to cope with going out to a Solicitor's office. Any disabled person on means tested benefits (i.e. Income Support) can get free legal help for will writing.

Monday, 2 October 2006 at 16:26:00 BST  

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