Right, well...a few weeks of ranting and raving aside, we now are moving solidly towards Plan B for DS.
Carers and funding have been found, and the trailer has been dusted off to move his final few belongings including his beloved Plasma TV over to the new Bachelor Pad.
So it's off to Respite Care for him for the weekend so we can move everything, and then a return to his own place instead of Mum and Dad's. He's happy, I'm happy (I think!) and all is well....
Except for one small thing...the funding is only for the next four weeks...yes it's Emergency funding, so in the next four weeks, we have to somehow generate an Independent Living Package from Disability Services...I don't hold out much hope as so far our efforts have come to naught, but never say never!
It's the new financial year in a minute too, so we are desperately hoping that the funding buckets will be refilled, and it may not be such a battle...everyone is just flat broke at the moment...by which I meant the service providers who would normally supply funding.
It's just accepting that this is our life for a while that's tough. Move DS in, get things right, pray and jostle for funding, and then maybe move him back in if money runs out.
I do however now know, that it's not just us. There is a newly formed parents group called Mad As Hell..google it and watch their segment on NSW Stateline, it's an eye opener. That's our life in a nutshell. So clearly there's a bit of an uprising going on amongst carers, and their disabled spouses, siblings, and children. And about bleedin' time too. DH and I have often felt that we were the only ones bucking the system.
I am also trying to present to a panel from Disability Services who have asked for submissions to suggest ways that the 'system' could be improved, and for ideas for the running of the new proposed National Disability Insurance Scheme. This scheme, similar to the one in the UK, will introduce a .8% increase to the Medicare levy to provide for the disabled and their families so that we can live a decent life. The logic is that we will ALL become disabled at some point, through accident, injury or old age, so we will ALL access the fund at some point.
If you are disabled by accident or injury, insurance companies look after you. If you are disabled by an accident of birth, no-one lifts a finger. The family bears all the burden of care and cost, and no-one helps us much at all. It's a national disgrace.
Anyway....I digress....DS WILL have his independent life, and so will I....lol!
July 5 2010...the start of our new life...his and mine. Bring it on!