Ned Ludd smashed up power looms - I want to break up power in the care world. I was a carer for my son with complex care needs (Profound and Multiple Learning Disabilities). If you understand Personalisation and the Resource Allocation Models, you'll probably see me as a troublemaker. I was the carer from hell who won't take no for an answer when Social Workers say there isn't the money or the system doesn't work that way.
My son had a Person Centred Plan - and a good service package provided by us in partnership with the voluntary sector and funded jointly by Health and Social Services - but they didn't like it. It wasn't done through Direct Payments. It was expensive and it bent a lot of the rules - but it kept him alive, in reasonable health and gives him a decent quality. It took many years to get it together and I suspect we made quite a few enemies on the way - but I can live with that if he got what was needed. If he could have talked, I think he'd have approved of me doing this, because he could be an arkward cuss at time - he wasn't an angelic little disability victim, but there again, nor was his family.
I'm not doing this looking for pity or sympathy - there are things I need to get off my chest. And sometimes idiocies that need exposing. So if you're looking for a cosy, caring view of complex care needs and disability, you'd be best looking elsewhere. This is about caring as it is - it's hard, stressful and tiring, and I make no apologies for any rants or if I need to offend the service providers/funders. You're just offended because I'm not being nice to you, we had to live with situation.
Despite our best efforts, our son's disabilities got the better of him and he died fairly recently. I'm still doing this as a tribute to his perseverance - it would feel like a betrayal if I stopped fighting. My respect to the carers still out there doing it.
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