Lived Experience Forum

[Leonie1]

I was granted a level 3 Aged Care Package but can't access any services because I live in the Bush and will only self manage.

Potential workers will not sign up with providers because of the amount of paperwork involved.  To sign up with a self managed NDIS recipient there is virtually no paperwork so that's where the workers are going.  Naturally one of the first things I did was see if anyone local is registered with Mable.  No.  This is a big problem for those of us in the Bush.  

There are so many discrepancies between the two systems.  It's discrimination.  I've written to the Human Rights and Equal Opportunity Commission and the Attorney General but will be some time before I get a reply.  In the meantime I have an out of control bushfire an hour away, floods expected over the next few days and a provider that told me they were very flexible before I signed with them but have turned out to be anything but.

All the stress has triggered my PTSD.  I just don't know what to do.  I'm frightened.  I have funds accumulating and no help in sight.  The Provider is the only one benefiting.  NDIS recipients don't even have to use a Provider.  They're not means tested, etc, etc, etc.  I feel like I'm going to lose my mind. 

All power taken from me and I'm terrified of someone having me locked up in a mental asylum if I go "off". I just don't trust anyone anymore.  My life has been one betrayed after the other.  I can't cope 😭

No family or friends.  Thank God for this forum.

[Blackbird11]

Hi @Leonie1 

I wish I could ease your fears, your situation sounds frightening. Have you tried Mable? You can find your own support on there. Here is a fact sheet that may have useful information and resources for you Post-traumatic stress disorder (PTSD) (sane.org). If you need to talk to someone contact us here Contact us (sane.org). Hope this is useful 🙂

[Leonie1]

There are no Mable workers available in my region.  Should have mentioned that.  Have amended my post.  That is the problem.  No support workers available in the Bush.  So many are forced to go through the hospital.  I won't because I have been bullied by the hospital in the past and now go to a clinic 50 km away.  The system treats us as one size fits all.  It's not fair.  And there's another fire heading in my direction 😭. But I'm not allowed to spend my package getting my block cleaned up.  (I'm recuperating after a serious accident followed by surgery so very limited as to what I can do).  I hate the government.  I hate the system.  I hate my provider.  I'm frightened .

[hanami]

Hi @Leonie1 

I'm so sorry things are so bad right now. I understand the system is letting a lot of people down. Please keep reaching out, we are all here for you.

Warmest wishes
Hanami

[Blackbird11]

Hi @Leonie1 

Is the provider you're with the best option for you at the moment? Do you have resources to find a better fitting provider? Can you hire someone to prepare you for the oncoming bush fires?

[Leonie1]

Thank you 💕

[Leonie1]

Stop patronising me

That's the second time today.

[Blackbird11]

@Leonie1 

I apologise for the way you feel, I had no intentions to make you feel that way. If you would like to talk to someone here is the number... tel:1800187263

I can hear how terrifying your situation is, we're here for you.

[holdinghope5]

Hey folks, can hear that emotions are running high here. Just want to step in and remind everyone of our Respect guideline. Even if someone offers us advice or input that isn't all that helpful, it doesn't mean they're being patronising or that they're deserving of hostility. We can always just provide further info about what we have already tried, or we can just say, "I'm not looking for solutions, just for someone to listen." 

Please email the team via team@saneforums.org if anyone has any questions or concerns. 

[Boppa]

Hello @Leonie1,

Sounds so familiar and so wrong at the same time, I am sorry that you find yourself in this situation and agree with you that the "system" seems rigged and unfair.

I own a home care business so have a deep understanding of what you are going through and realize that being in the bush would amplify the issues you face.

If you let us know the providers in your area maybe I could give you some guidance & advice?

Don't let the system wear you down, there are good people out there who will try to help.