I was diagnosed in 2008 but my neurologist is confident my first relapse was in 1998. I’ve now moved on to Secondary Progressive and a wheelchair. Enough about me though, I have a problem that is impacting my care and I’m sure I won’t be alone.
About 3 years ago, I was moved from Direct Payments to Self Directed Support to pay for my care. I was told how great it would be because I was in effect an employer and my carers were my employees. For 3 years it has worked well until 3 weeks ago. My local council have decided to introduce charges for my care. These charges are having a real detrimental affect on both me and my care. I have had to pay £613.25 in back charges to 1 April and £63.25 per week from now on. I’m at a loss as to how they expect me to live on two thirds of my benefit and I hear today that the government are planning a further £12 billion of welfare benefit cuts. I’m no mind-reader but I’ve got a good idea where the axe will fall. Back to the SDS though, I know I need to contribute something to my care and I’m happy to do so but at a level whereby I can live not just exist.
As a footnote I’ve learned from the SDS website that there is no legislation in place compelling a local authority to introduce charges. That leaves us in a split society where some authorities charge and others don’t.
Maybe I should move house!!