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.

WTAWTAW Part Two:

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.