Sit down. Don’t faint. I have a NDIS planning meeting tomorrow. I hope all goes well but I’ve been warned, if they think I’m capable, I must manage my own accounts (currently I have a carer manager). An excuse that I’m busy with rehab and writing will be no excuse. Therefore, if this is true, they’re effectively telling the disabled – have anything but sacrifice hours in order to manage your affairs to get what you need, including carers.
All my time is spent doing rehab (till 2pm, 4 days a week and often 1 1/2 hours at night) or writing (any free time) or showering and dressing (sometimes an hour and a half) or eating (I’m slow so say 1/2 hour) or drinking (I can only swallow once at a time and if I drink fast I regurgitate it, so say 1/2 hour a cup. At present I only manage 5/6 glasses a day, so say 3 hours) or the toilet (we’ve got this down to 15 minutes) or organising dinner (typing instructions- maybe 15 minutes) or typing instructions to carers for thing to do (I’m asked throughout day spasmodically).
Or communicating with the outside world via message because that is my primary form of communication. Remember, I can’t talk (varies, but when I type perhaps 10 words per minute, time quickly adds up) or shopping (online for a few hours every week) or dealing with my kids and their fights/food/games/school/sport/homework (how long is a piece of string?) and I can’t find time now to practice my speech.
I should be doing household chores, like actually being involved in putting on the washing or preparing dinner for my rehab, but I don’t have time already. Our household would grind to a holt buried in dirty washing and we’d never eat if carers didn’t step in.
The list goes on and on – hair, makeup, medication, doctor appointments etc.
And they want me to manage accounts amongst this? And stay on top of it? Are they joking? Only time will tell if there is a sting to the promise. Boils my blood to hear the NDIS advertised on the radio as wonderful. The reality is a yin/yang scenario.