The really simple answer to this is it is just mum and I full time. My dad helps where and when he can, but being the health care needs I have, that im a grown woman, and the intensity of my condition overall. There is honestly little he can help with.
So why aren't the community services involved?
Because we live in Queensland, each state in Australia has an over seeing disability governing department. Who make sure people who are disabled get help and over see the the organisations involved. In QLD its called DISABILITY SERVICES QUEENSLAND or DSQ for short.
So how it works is you and your doctor put in a claim form asking for assistance with your disability and await a reply. Unfortunately for mum and I, DSQ does not recognise me as disabled just a chronic health condition. Which under their boxes comes under medical condition. And therefore I do not qualify for help. Yet the Australian Government Federally recognise me as disabled so I get payments.
Why is this important? Because unless DSQ see you as disabled and give you a DSQ number than you cannot get ANY support services in or help. No respite for mum and i; no community care; no community support, all community care services locked out, nothing!
Because DSQ monopolise the community services, unless you fit into the boxes you don't get help. Which means you only get help through paying. Now we aren't in any position to do this. Because of DSQ its isolated mum and I beyond words compare. We have tried to overturn this ruling but we got the same appeal officer. Who admitted to doing a google search and ignored our Doctor's referral. We then reached out to our local MP who sat in our home promising to help. . .we chased him with calls/emails and in the end he saw mum out getting the groceries. Saw her and that mum saw him. Quickly looked away and ran in the other direction. So we knew no help was coming.
Well what about family and friends?
Again we are physically alone in this. Its just mum, dad and I. We don't have any blood family in our area; they are in another states. Our adopted family are also 100's of kilometers away from us.
Friends well because of no services support by community organisations. We don't know anyone here; who gives genuine help that we need.
We moved here once I had CRPS and this prevented us from everyday access (limited access), however it was access. (From October 2013 till July 10th 2014.)
But once my disc blew in and my coccyx broke . . well that was it. My disc blew in June 2014 where I struggled greatly till we called the ambulance in September 2014.
I can't sit, so no cars, buses. I can't walk longer than 5 to 10 meters without experiencing crippling pain. Now some may say push through and keep walking.
Well if i get in a flare on a public side walk. how do I get to safety? I loose all motor control of my body. And I can't sit to get back home in a car.
So yes when we say we are isolated from the world that is what we truly mean. Our only link to any world, is online. And that is very different to human contact. People need to see, hear, touch and experience people in that moment whether, It's going out for coffee, exchanging a 5 minute conversation.
People crave people, some need to be around people all the time, some once in a day. But we all need to have human contact.
Which a lot of that is stripped away by texting, messaging, etc. Causing miscommunication, misunderstandings, depression, anxiety for when you do see them in person for the first time.
My family and I were so over the moon when my L4 was fixed in July 8th 2016 and we got 8weeks to be out free, happy but by September 2016 it wasn't to last, as the coccyx broke back.
I hope this blog has answered and explained a bit more about our world.
Until next time