I complained and I was eventually assessed as needed help. Instead of sending a home help or carer out to me I was awarded a package of 10 hours and given a regular amount of money to be spent on meeting my assessed care needs. I employed a care agency to take me out of the house in my wheelchair and do my cleaning and laundry. My condition became more manageable as I could pace my activity and I wasn't stressing about the pile of dirty dishes in the kitchen or getting depressed about being stuck in the house on my own.
Over the years my health has deteriorated, my responsibilities have increased through having three children and my care package has increased accordingly. Currently I use my direct payments money to employ a personal assistant, a cleaner and a child minder to take my children to school. This arrangement works very well, it means I can keep on top of all my chores, manage my condition and even leave the house once in a while to go to the shops and do all those little things that fit and healthy people take for granted.
Last year a social worker came to the house to do my annual review. It's usually a formality, my condition hasn't changed, I still need the same amount of help so that's that. Except it wasn't. Budget cuts and new assessment software meant I had to have a full assessment, but because I don't need help with personal care (ie washing, dressing, eating etc.) my budget was calculated as £0.00. Yes, nothing. I appealed, had a rather challenging meeting (especially considering I had a fever and was shivering like mad) and my existing package was reinstated.
Fast forward to this year and I get a call from a different social worker who wanted to do my annual review. Let's just say it didn't go too well. Apparently I'm not allowed to pay a cleaner to do six hours work a week because policy says I can only have three. That's three hours a week to do all the household chores for a family of five, including cleaning, laundry and food shopping.
Have you stopped laughing yet? Well I've got another funny for you. I'm also not allowed to have someone go with me to medical appointments because that need is met by DLA. I claim Disability Living Allowance Higher Rate Mobility which I use to lease a Motability car. It's a fantastic scheme but unfortunately the nice Renault Grand Scenic on my driveway is not capable of getting my mobility scooter out of the garage and putting it in the car, or driving me an hour to Sheffield to see my specialists and physio, or opening the door when I need the toilet or going to the cafe and buying me a bottle of water when I'm tired and dehydrated, or any of the other things I need help with when I go to a medical appointment.
I really wonder who makes these policies. The social worker said the County Council have to cut several million from the budget. It's rather convenient that they take that money off the people who are least able to challenge it. I wonder how many cuts the top level managers are suffering? Are they allowed to have more than three hours a week to clean their lovely homes?
I've got to wait to hear the result of my review. If my package is reduced I'm going to appeal, but right now I don't have the time or energy to deal with this. My health is pretty poor at the moment and I need to get well enough to start physio next month. Stress is not my friend so I'm trying not to worry about it, although it's always nagging at the back of my mind.