I am Steve, am 49 and have been totally blind and 80% deaf since 1980.
For the last ten years I’ve been a wheelchair user, having Alstrom syndrome which affects my heart, kidneys, liver and lungs. I also have problems with my back and neck as well as a form of osteoarthritis and nerve pain.
I need a lot of support with communication, having a social life and getting out of my flat.
After more than six years of trying to get support from social services, in November last year it was decided to give me eight hours support each week. Before this, my mum had to help me but wasn’t paid for any of that hard work. She doesn’t live with me and she is 69. She also has some arthritis and is becoming blind in one eye. She has already had a successful operation for cataracts in the other eye and is hoping to have the problem operated on at a later stage.
I also get two hours support from Leonard Cheshire Disability to take me swimming. Due to using a wheelchair, it’s important for me to get some physical exercise, otherwise my syndrome will get worse.
Due to it taking nearly nine months to sort out how much I have to pay for my support and how much the local authority will pay, I have incurred a large debt to the council. Even though they have offered the best terms possible to pay back the debt, this is putting strain on both my mum and myself.
Because mum is now providing all my support and getting paid for it, she has lost all the means-tested benefits she used to get including rent rebate and has just received a large bill of several hundred pounds.
I have to use a quarter of the DLA I receive to pay for my support, due to the £181 in Employment Support Allowance (ESA) I receive each week.
DLA is meant to help cover the extra living costs for disabled people but despite the high amount of ESA it doesn’t! Having eight hours a week of support doesn’t make these costs disappear. So why should I have to contribute out of my DLA to pay for my support?
Why should my mum have to lose £50 to £100 a week in benefits, just because she is now earning money to keep providing all of my support? She’s still providing a lot of support for me.
It isn’t fair that disabled people should suffer due to bankers’ blunders and government squeezing! It is only a short time before government policies make both my mum and I more seriously ill or disabled!
The Government need to sort out the crisis in social care funding and make the system for charging people for social care fairer.