care,  CP related,  Uncategorized

>Pondering the care situation

>I’ve yet to do anything concrete about the situation with my care being stopped. But I have been thinking and wondering and researching.

No longer having care is something of a tempting idea. However it’s not a practical idea. I will always need some form of support system in place. It actually doesn’t look like I will be particularly successful in getting this decision reversed but I’m going to try.

Reading the report on my needs is galling in that several of the parts I feel spin what I actually said into something different. And in places it reads as though she was wearing some rosy-glasses because you know, I really could clean the floors and the bathroom and cook full healthy meals for myself and change my bed, I’d just like a little help.

Yeah, right.

Yes I can do parts of each of those tasks and there are other things that my carers sometimes do which I can do myself. But that’s about energy levels and fatigue and the amount of time it takes me to do stuff. It’s about enabling me to have a life rather than just keeping me alive.

My counsellor said something to me on Wednesday about how I can lie to as many people as I want to about whatever I want but not to myself. To myself I must be true. And she’s right. I’d like to stop having care. If I could manage I would have agreed like a shot. But I can’t manage. And pretending I can isn’t going to do me any good. As much as I’m not keen on it, my truth is that I need care.

A quiet day at work allowed me to investigate our intranet and find the care criteria. My social worker had sent me information on them at my request and basically that just said “there are criteria. They fall into four categories. we pay for the top two only. Tough luck if your needs are medium or low.” and no details. Nothing about what needs are in which categories.

The information I found at work does list how needs are classified. And based on that information I believe my needs should have been classified as “medium risk” rather than low. Which still isn’t high enough to get my funding back but substantiates my feeling that the decision had been made before my social worker visited me. I do understand the need for criteria with limited funding but feel that this should be flexible and take into account personal circumstances. It’s all well and good her telling me my parents can provide my support – but actually, they can’t do it and I can’t cope with the guilt that sometimes gets involved in their providing my care (which is to do with me, not them).

Mum and I don’t believe we can get my care funding back for me based on physical need. So on Monday morning I have an appt with my GP to talk about my depression. Because risk of deteriorating mental health is a substantial need and would therefore mean I had to be funded. I was due to check in with Dr B about depression stuff at some point in July time anyway, just for a med review. But now I need her to help me fight this decision and have to go sooner. I have to hope she agrees with me else I’m up shit creek. I don’t like it. It seems like I have to emphasis or even over-emphasise my disabilities (my depression is classed as a disability under the DDA’s legal definition) to get what I am entitled to. So much for a “people first” society.

I’ve spent more time than I can remember in therapies and working with family and friends and carers to learn to do things for myself. I am fiercely independant. And now I am being discriminated against for that.

Sometimes I wonder why I bothered. Life would often be so much easier if I were one of those poor pathetic helpless little cripples. But then again, it would also be boring.

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