The first words that entered my head are unrepeatable in polite comany.
They took all the information I gave them, the outcomes I had spent hours writing, the financial breakdowns that outlined how my current costs meant I needed a 30 hour a week package, and the letters from all my consultants and decided that I needed:
- 14 hours personal care
- 4 hours domestic care
- 5 hours parental support
Sorry, but there is no other way to express my disappointment and anger at the situation. My PA has a contract for 18 hours a week, my childminder works the equivalent of 6 hours a week doing the school run and other support and I pay and agency cleaner to do 6 hours cleaning and laundry. How am I supposed to manage with 23 hours? What do I cut?
- Do I risk letting my children walk to school on their own? They are 8 and 9 years old and have to cross quite a busy road with double parked cars.
- Do I lose my cleaner? Without her the beds woudln't get changed, the floors would go dirty and the bathrooms would fester. My house would end up being a health risk?
- Do I lose my PA? She is an absolute saint that gives me the independence to do everything I need to do from medical appointments, and food shopping to going to the library, looking after the kids so I can rest and generally keeping control of my life.
I still can't believe what they have done and they will not budge one inch so I'm going to have to take this to the next level, I might even have to get a solicitor involved as they are in breach of several of their own policies.
Fair Access to Care Services, a government document that sets out the standards social services are expected to follow states:
Staff undertaking reviews must work with the individual, carers and relatives on managing the effects of any reduction or withdrawal of services or personal budgets resulting from the review process.
When I asked the social worker about this at first she said it was my responsibility to work it out, then she said they would help me find cost free support in the community. There isn't anything reliable or suitable to meet my needs. If there was I'd be using it already! In the past social services has suggested asking other parents to take my children to school, but that is wrought with problems. Would you take someone else's kids to school, every day for no pay and with no chance of the favour being returned? How many years would you be prepared to take on that responsibility? It's not really an option because being pretty much housebound I don't know any other parents well enough to ask and I would not be happy doing that as I can offer nothing in return.
FACS also says social services:
...need to exercise considerable caution and sensitivity when considering reduction or withdrawal of care and support, and to ensure that people and their carers understand the reasons for these changes.
There has been no sensitivity and no explanation, I was told that was what they had decided and I could not barter for more hours.
They are not allowed to reduce or withdraw support if that would mean an increase in eligible needs, but that is exactly what they have done. Well they picked the wrong person to piss off because they are going to have one hell of a fight on their hands.
Wish me luck!