Dot

Very. Worst part is there are many people within governments that now know about my case and are in power, yet still somehow the help never comes. I am dealing with health cross border issues as well… New South Wales, Victoria, and South Australia all have lots of issues where the borders intersect.

#invisibleillness #chronicillness All the current systems available fall way short when it comes to rural areas. I’ve tried to tell to those in governments-fed and states-those in power don’t care the systems are broken,otherwise why don’t they help? #cryforhelp #bushhealth #brokenhealthsystems

The last yr seem like it’s only been a horrid fortnight & have made no progress all year again to get help. Gov agencies don’t seem to want to help country people? #NDIS so far has been a 😥joke towards my situation. There are big gaps in the #auspol #sagov #vicgov health systems no one wants to fix.

I’ve had people want to help but because of the red tape I can’t get help. WSafe only seem to want to engage w/ big city reg providers &are unwilling to be flexible in rural Aus. A local would do a Sunday for $~50/hr and citybiz wants $~200/hr for rural areas &actual carer gets about $58/hr. Crazy!🙄

That is all very true. The pricing is a real issue I’ve found plus these huge providers telling insurers they can meet the needs of people (once a city person hears that they don’t care if the care doesn’t meet hours needed etc). Stupid thing is country people would charge half price and far better

Many of the same issues are faced by those seeking help with Worksafe/WorkCover in rural areas in Aus. Providers fewer again,+have to also be registered by the insurers in order to be used! Leaves those looking for help with little to no options. I had to apply to the #NDIS for help #vicgov #auspol

Coonawarra Q-Fever sufferer 'falls through the cracks' in WorkCover scheme Q-Fever sufferer Sam Clayfield is using the little energy she has to fight for the care she needs.

It is the same in states with worker’s compensation schemes. The systems are broken. They break workers & their loved ones. There is an argument for a national standards & system so insurers act in good faith. I’m a number and not a human being. 😪 #auspol

www.stockjournal.com.au/story/892971...

Coonawarra Q-Fever sufferer 'falls through the cracks' in WorkCover scheme Q-Fever sufferer Sam Clayfield is using the little energy she has to fight for the care she needs.

www.stockjournal.com.au/story/892971...
Please share to help others avoid catching Q fever. Please read the issues with healthcare between state borders
#auspol #qfever #vicgov #agvic #cpsuvic #statesystemisbroken #agriculture #australia #sahealth #vichealth #worksafe #stockjournal

Ta 👍 I can't work sadly,so can they still help? I'm basically being asked to sign with no answers to my questions-I was told I'll find out 'once you are on the system'? But the #NDIS website clearly says if states are responsible then they should pay? Also #crossborder stuff? #confused #qfever

Anybody had experience with #ndis AND interacting with a state based WorkSafe system responsible for their health in Australia? Has it worked for anyone? Any issues/experiences/dangers? Feeling like a canary in a coal mine! 🐤😵‍💫🫤 #crossborderissues #auspol #chronicillness #vicgov #wheretofindinfo?

When you try & do the right thing by telling the truth, when you have near nothing left of your health-why is it that instead of others trying to help, you instead get seemingly endlessly punished by bureaucracy for the audacity of being still alive? #chronicillness #qfever #invisibleillness #auspol

I’m exhausted from the never ending fight for what is not just right morally, but also legally…and for just the right to exist! To be chronically ill is to be invisible to others, the longer I’m unwell the more others get frustrated with me for being ill. ❤️‍🩹 #chronicillness #qfever #vicgov #invisible

The fascists win when we give in to hate. When we stop caring about one another. When we reject our responsibility to society as a whole.

Wear a mask. Shop local and minority owned businesses. Be an ally. Amplify marginalized people & share their stories. Make your resistance inclusive.

Nothing can prepare you for the pain of watching people you love disappear from your life when you become chronically ill.

They stick around for awhile, asking “are you better yet?”

They need you to say Yes. They want things back to normal.

When it doesn’t happen? They vanish

I'm so sorry to hear that. 😥

It was meant to help people stay a part of the community wasn't it? Sounds like it has lost its way. 😥

Q: "Why should we all have to do something just for a few disabled people?"

A: "Human rights."

I've tried & tried. Why does no Victorian/Adel/Melb journalist seem to want to help tell my story? Who will hold the Governments accountable for health care? Anyone on here interested pls? #negligence #6years #vicgov #auspol #helpplease #emailaddressesforjournosneeded #cpsu #sapolitics #delaydeny

So sorry this is happening to you. I'm about to join NDIS and I'm terrified of this. I thought it is meant to help people in need to live actual lives, and not just exist? 😥

Disability is the only minority group you can join at any time. No one asks for it or expects it, it just happens

It’s not a moral failing. You didn’t “deserve” it. Most people will experience disability at some point in their lives

So why do we treat disabled people so badly? 🧵

Make your resistance efforts accessible. Wear a mask. Clean the air for indoor events. Encourage people to stay home if they’re sick.

Disabled people want to be involved and can bring a ton to the table if you include us.

We live in constant fight or flight. We are uniquely built for resistance.

Thankyou👍 & SA GPs definitely need help too. Lots of unpaid time done in order to make sure patients don’t suffer. I’ve had 3 local GPs over the yrs spend their own time playing catch up with federal and state paperwork that is not covered by Medicare. For me & many others💚 Our GPs are true heroes 🙌

All the things you've said.🙌👍 It's like common sense is not something that is understood at all! 🙄 Wish the ppl that make the final decisions would just try to have even a modicum of empathy for others. Ironically applied for NDIS because I had no real rights ensured/ choice under current insurer🤦‍♀️

Just had been so much negative stuff online re ppl on ndis or dsp etc- I'm on neither, but if you have a disease that isn't instantly recognised, half the battle is getting people to understand what it is. You did a good job with long covid. Hope I can be brave too. 🤞 Thank you Jordan 👍

Your story was very important in getting people to understand long covid. My problem with my story- it so many twists and turns from gov issues +there is a real threat there will be retaliation towards for me speaking. Soc media has been also not nice to people with disabilities. #Scared

Thank you Jordan. Btw I think you were very brave telling your story. 👍

It's very gradual the first few years. Then seem to be all alone very suddenly. A few good people call occasionally, but it gets to the point when housebound that you become invisible to everyone and everyone forgets you are alive.

Anyone in #Australia know of some trustworthy #journalists for a #chronicillness + #auspol article? Many politicians involved. How to do it when vulnerable? #resources ? Because of my unique situation, the usual free help in states, not able to access. #helpplease #sagov #vicgov #fedgov #urgent

And yes the hepa filters I use have activated charcoal in them too.. but now you have me the name of raw materials I've found an Aussie company mashing them with cardboard instead of plastic on the outside. So that's another win!🙌👍 Plus our vents are all the same size which makes it easier 🥳👍Thanks🙏

Thank you SO much!👍 I didn't know the name of the filter stuff- but now you've given me info on Merv-13 I've been able to find Aussie manufacturers. This means I can now get the air con guys to fix the vents in our house. I'm housebound- so this info is life changing. Thank you Brenda so much! 🥰🙌👍

I require homecare and it’s been a battle getting them to mask.

Many huff & puff. Some only wear surgicals. One wore the N95 I provided but upside down.

We deserve to be safe in our own homes. The people we’re forced to rely on shouldn’t be the ones infecting us.