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I can't fight any more...

From my facebook over the last 2 days:

1/ So. I get an incomprehensible letter that seems to say that they are charging the same for direct payments as they provide for home care and assessing your finances as if you are in a care home. The upshot is that from October they will take away £53.81 (nearly all of it) of my DLA to put in my care package account rather than £6.21 A WEEK! As since J, 3 and half years ago, left, I have been paying between zero £0.00 and the most £40 for my care when I can find someone I am mostly £6.21 week worst off so I think me and the Oxfordshire care system will part company. Just as I found a decent carer!!!! Better I pay direct out of my DLA if I can I think! Things just get harder and harder...

2/ It's 5.30 and I've not slept. I thought I could park the care package til they phone me on 31st August or later for a financial assessment and tell them I don't need one, I won't have a care package anymore instead, I'll employ directly with my DLA - the uncertainty and the weeks and months over the past five years I've been able to employ no one or the people I employ have been off sick and the hours are rarely fully filled, but I'm stressing now that no one I employed ever gave me a receipt or invoice as l been quite informal (for 4-7 hours a week mostly housework as you would expect) and now I'm stressing they are going to want it all back if I close it down with no invoices... then there is the small whisper of remembrance of a house filthy and untidy and washing piled higher than the fridge and I wasn't feeding us and that was when (BK) was 7 and at school and I was no where near as bad as I am now... But what happens if I am refused PIP when I am finally transferred, the council will be taking all that money, all the disability premiums would go as well as the DLA and I'd end up with about £4 a week to live on, and probably no carer either!!!! But then, a care package would be evidence with the transfer to PIP. And I'm still waiting for (BK)'s PIP mandatory reconsideration and if she doesn't get the PIP she won't be able to go to the performing arts course she got onto. I paid my NI and tax when I was well enough to work, I didn't ask to get this condition, I asked for help with my daughter for a decade, not neglect that led to her several traumatic brain injuries... why don't they just be fucking honest and gas us? No one cares, look at the poem about Nazi Germany, first they came for the disabled, but are they mentioned?! Two UN reports on the abuses of disabled human rights, but where is the Opposition and Media outcry? Sorry. ignore me. Oh, you probably are :p


( 3 comments — Leave a comment )
Jul. 5th, 2018 08:10 pm (UTC)
*snuggles* Oh sweetie, I'm so sorry. I'm not online much due to the insufferable heat we've got here, but please don't feel that you're alone. I'm still unable to help as I wished I could. But you've still got us. Even if that just means someone to listen to you and offer virtual hugs. Could your mother or brother go through these things with you, perhaps? Maybe they can make some sense of it?
Jul. 8th, 2018 09:35 pm (UTC)
Hugs. I have no idea what else to say.
Jul. 9th, 2018 05:08 pm (UTC)
The letter seems odd, obviously I haven’t read it but is it worth talking to someone to clarify? I know some of the phone lines take ages to answer, but sometimes there is an email address or a direct phone number.
Bureaucracy doesn’t always get it, I was told that they were taking my care money away as it built up over the summer, but I was funded for term time only which the system could only deal with by paying it over 12 months.
PIP is based on need, even if that need is not being met, so lack of carers should not affect it.
As always, lots of hugs for you both.
( 3 comments — Leave a comment )



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