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Testimonies

Trapped in a cold, dirty house.

Location: UK » West Midlands » ST
Testimony relates to: Social Care, ST7
Trapped in a cold, dirty house.

My social care is going to be cut by at least 80%. I won’t get help with laundry (so I get help with a shower, but will have to put dirty clothes back on). I have coal fired central heating, and I ‘m not allowed help with bringing coal in or operating and cleaning the 2 multi-fuel burners (it is my only source of heating and hot water, and I can’t even carry a coal bucket). No help with cleaning or doing any bending jobs apart from the prescribed jobs whatsoever. No funding for a carer to take me out in a wheelchair for appointments, shopping or social activities. No funding for any shopping or any errands, like posting things, that need to be run.

My local authority website page for social care is called ‘Living My Life, My Way’. It speaks about personalised and tailored care packages that meet disabled people’s ‘needs, wants and aspirations’. Conversely, they will not meet my basic care needs, let alone provide for my ‘wants and aspirations’: ‘personalisation’ this certainly is not! I even have to pay the same £3000 per year for my care, and I’m not even allowed the choice to decided what I need doing in the hour a day that they are willing to provide (reduced from 4 1/2 hours per day)!

The assessor said I was to use my DLA to pay for the extra care, but as I pointed out, I pay all of my care element back to the local authority, and part of my severe disability element. When I’ve paid for other things that DLA was meant for, like extra fuel, other jobs like gardening and things I cannot do myself, special dietary requirements, and adding shopping delivery charges to that, I will have exactly £10 per week left over. £10 per week to pay for all my additional care/transport needs: It’s a joke.

I was asked if I had any ‘informal carers’, presumably so that they can take over with regard to my care needs. My friends are my carers, and my other friends are pensioners and one lady with a profoundly disabled son, all of whom could not possibly take over where the local authority left off. This also puts me in a very vulnerable position. My carers are vetted, but now I’m supposed to totally rely on other people who are not trained as carers, and this can put pressure on relationships.

I know of one situation locally where this has happened. Friends ‘took over’ when this lady lost her DLA (despite being dreadfully ill and on morphine). It was all OK for a while, then they started to resent the situation, and she was bullied. She became dreadfully depressed about it. That sort of thing is going to happen more to disabled people when they are forced to accept help from people who they personally would prefer not to help, but they have no ‘choice’ in the matter because they desperately need the help.

I cannot understand how the government can say that they want more personalised care packages for disabled people, but at the same time allow local authorities take away any control disabled people have over such care packages, and cut them to the bone. What is so deceitful about this is that there is nothing mentioned at all about this on the local authority website, and it has not featured in the local news unlike Warwickshire where they were only actually talking about cutting care packages. As a consequence, these cuts are being hidden from the public.

I face being largely trapped in a cold, dirty house, unable to do the normal things in life that anyone would expect to, with no dignity at all.

I also find it sad that I dare not even upload my photo, make a video, or link to my website where I discuss these things because people like me feel very vulnerable at this time, both at home and in the community. 

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