As always Anna, thanks for being useful and thorough!! I have to say, I have many concerns but two major ones right now….. I am not using my plan as needed because I can’t get the support (from OT predominantly) in order to do so! I have literally no one to advocate for me and I’m on my own in this world. Then I worry about being kicked off because a) I’m not using my plan (although not for a lack of trying and not because I’m not substantially deteriorating) but also b) if I can’t access support now, how on earth will I be able to meet their random stressful and traumatic check ins to prove that my degenerative condition still needs help! For goodness sakes, to even get on the ndis you need to prove there are NO other treatment options to utilise (and then magically have goals?!) but if you had to prove it was lifelong with no other treatment options, having to prove repeatedly by traumatic and stressful events (especially given they are also taking away supports to engage in things like education, employment etc) that you still need them….. how on earth can I guarantee doing that in time when wait lists are long everywhere and then even if you make it on and you dare question bad (or illegal or unethical) practices then you’re at risk even more of being pushed out. And I have never asked for a “top up” even though the NDIA literally asked me to multiple times. Many thoughts but I’ll leave this one here. Thanks Anna, truly. You’re a bright star in this mess!!
As always Anna, thanks for being useful and thorough!! I have to say, I have many concerns but two major ones right now….. I am not using my plan as needed because I can’t get the support (from OT predominantly) in order to do so! I have literally no one to advocate for me and I’m on my own in this world. Then I worry about being kicked off because a) I’m not using my plan (although not for a lack of trying and not because I’m not substantially deteriorating) but also b) if I can’t access support now, how on earth will I be able to meet their random stressful and traumatic check ins to prove that my degenerative condition still needs help! For goodness sakes, to even get on the ndis you need to prove there are NO other treatment options to utilise (and then magically have goals?!) but if you had to prove it was lifelong with no other treatment options, having to prove repeatedly by traumatic and stressful events (especially given they are also taking away supports to engage in things like education, employment etc) that you still need them….. how on earth can I guarantee doing that in time when wait lists are long everywhere and then even if you make it on and you dare question bad (or illegal or unethical) practices then you’re at risk even more of being pushed out. And I have never asked for a “top up” even though the NDIA literally asked me to multiple times. Many thoughts but I’ll leave this one here. Thanks Anna, truly. You’re a bright star in this mess!!
Thank you for sharing your experience. Stories like yours need to be heard.