Why isn’t anyone talking about fact that not a single person in ndia or ndis has any kind of medical knowledge to understand confidental complex medical conditions that are described in professionally written reports & then how can they decide what funding a disabled person needs .
Last year my daughter was diagnosed with brain cancer, she passed all of the jumps and hurdles of NDIS with flying colours, yet NDIA refused her any assistance because they do not fund anyone who is terminally ill. She died in November 2023 completely let down by this decision. I was disgusted.
One reason people choose their medical report writer carefully where we can is because if you use the wrong phrase to say the right thing, you don't get what you need. We can't talk to the decision makers, to ensure we are understood. As El said, we don't get draft plans, so the best option is to find the person who knows how to use NDIS-speak best.
I actually managed (on the Complex Support Needs Pathway) to get a draft plan earlier this month. Except that it turns out it's not a draft plan as the planning decision has already been completed. NDIA staff don't understand that a request for a draft plan means a preliminary plan before the decision is finalized. So even if you get the "holy grail" and a planner will give you a draft plan, it's useless.
It shouldn't come down to the format of words we use to get assistance, that is ridiculous. What we want is someone to pick up the ball and run with it to its conclusion.
@@MaxB6851 Exactly! I fought on those grounds and in yet another review mtg 'suggested' that the NDIA lawyers provide me with the precise terminology they required given it seemed that 3 specialised practitioners on 3-4 separate occasions don't seem to be able to provide the precise wording to describe their own area of expertise and diagnoses. I insisted that this be part of the outcome of the mtg. It was provided and we finally got through but only because I could stand up to them. We were always denied due to language semantics.
There are still doctors who laugh themselves giddy at the plight of ME/CFS sufferers (and at similar chronic illnesses). Yet every chronic illness sufferer who has ever had to walk away from this foolish behaviour and find a more knowledgable doctor has been labelled a "doctor shopper" at some point.
What a fantastic episode! As a participant myself, I find a huge frustration is no support in coordinating and advocating the "this is mainstream" vs "this is NDIS". A support coordinator is fantastic within the NDIS. Can they advocate for me for mainstream supports? No. There is no support coordination in mainstream. When my GP doesn't listen to my OT. When the Crisis Triage team doesn't listen to the GP. When you can't get hold of a psych. Who do you turn to? In the last few weeks, I contacted my disability advocate for help in this area with specialist support. I received a reply saying their funding had been cut and they no longer did advocacy in my area. What? Coordination of mainstream supports, access to and then support through mainstream, it's just not there.
@@SummerFoundationLtd Where this becomes a real challenge is when supports say, 'but you're an NDIS participant, use those funds'. And you get given the 3rd degree as to why your not wanting to use them. It's observed experience that the NDIS funds are being spent to get essential lifesaving services because mainstream doesn't have the specialists in mainstream, the capacity, or one cannot self advocate effectively enough to get 'into' the system . So what do you do?
My funding was severly cut in oct 23 by 2/3s since then in feb they increased my funding & it’s still not enough . My O/T has written several assessments for ndis stating I need longer support hrs . I called them immediately after their call to me I asked for a review ..not an internal review they wrote to me saying I’d asked for int review and it was denied ..I called lac who only wks3 days wk. She corrected this and asked for a review . This has taken since 22/02/24 till 11/05/24 . Before they ripped my life apart in October o was just beginning to build capacity & thinking looking at a return to wk for 1st time in 10yrs . Now I’m struggling to want to live .. I’m not suicidal but I don’t care if I die .. my future is bleak I cannot cope with such injustice .. I’m better off dead 💀
I’ll never submit to an NDIS Dr assessing me .. that system doesn’t in ins industry & it ain’t going to wk for ndis ! My drs reports are enough evidence
UA-cam itself doesn't support listening to closed captions, but sometimes if you look at the accessibility settings of the device you are using, you may be able to activate audio description which can read the closed captions.
Why isn’t anyone talking about fact that not a single person in ndia or ndis has any kind of medical knowledge to understand confidental complex medical conditions that are described in professionally written reports & then how can they decide what funding a disabled person needs .
Another incredible episode of my favorite podcast! So glad that El and Mitch can shine a light on the work that is still required.
Thank you for watching! GT
Government ministers may talk to us, but they seldom listen.
Last year my daughter was diagnosed with brain cancer, she passed all of the jumps and hurdles of NDIS with flying colours, yet NDIA refused her any assistance because they do not fund anyone who is terminally ill. She died in November 2023 completely let down by this decision. I was disgusted.
I'm so sorry.
So sorry for your loss ... I agree it is absolutely disgusting that they do this
One reason people choose their medical report writer carefully where we can is because if you use the wrong phrase to say the right thing, you don't get what you need. We can't talk to the decision makers, to ensure we are understood. As El said, we don't get draft plans, so the best option is to find the person who knows how to use NDIS-speak best.
I actually managed (on the Complex Support Needs Pathway) to get a draft plan earlier this month. Except that it turns out it's not a draft plan as the planning decision has already been completed.
NDIA staff don't understand that a request for a draft plan means a preliminary plan before the decision is finalized. So even if you get the "holy grail" and a planner will give you a draft plan, it's useless.
It shouldn't come down to the format of words we use to get assistance, that is ridiculous. What we want is someone to pick up the ball and run with it to its conclusion.
I couldn’t agree more.
@@MaxB6851 Exactly! I fought on those grounds and in yet another review mtg 'suggested' that the NDIA lawyers provide me with the precise terminology they required given it seemed that 3 specialised practitioners on 3-4 separate occasions don't seem to be able to provide the precise wording to describe their own area of expertise and diagnoses. I insisted that this be part of the outcome of the mtg. It was provided and we finally got through but only because I could stand up to them. We were always denied due to language semantics.
There are still doctors who laugh themselves giddy at the plight of ME/CFS sufferers (and at similar chronic illnesses). Yet every chronic illness sufferer who has ever had to walk away from this foolish behaviour and find a more knowledgable doctor has been labelled a "doctor shopper" at some point.
What a fantastic episode! As a participant myself, I find a huge frustration is no support in coordinating and advocating the "this is mainstream" vs "this is NDIS". A support coordinator is fantastic within the NDIS. Can they advocate for me for mainstream supports? No. There is no support coordination in mainstream. When my GP doesn't listen to my OT. When the Crisis Triage team doesn't listen to the GP. When you can't get hold of a psych. Who do you turn to? In the last few weeks, I contacted my disability advocate for help in this area with specialist support. I received a reply saying their funding had been cut and they no longer did advocacy in my area. What? Coordination of mainstream supports, access to and then support through mainstream, it's just not there.
Thanks for your feedback and insights
@@SummerFoundationLtd Where this becomes a real challenge is when supports say, 'but you're an NDIS participant, use those funds'. And you get given the 3rd degree as to why your not wanting to use them.
It's observed experience that the NDIS funds are being spent to get essential lifesaving services because mainstream doesn't have the specialists in mainstream, the capacity, or one cannot self advocate effectively enough to get 'into' the system .
So what do you do?
My funding was severly cut in oct 23 by 2/3s since then in feb they increased my funding & it’s still not enough . My O/T has written several assessments for ndis stating I need longer support hrs . I called them immediately after their call to me I asked for a review ..not an internal review they wrote to me saying I’d asked for int review and it was denied ..I called lac who only wks3 days wk. She corrected this and asked for a review . This has taken since 22/02/24 till 11/05/24 .
Before they ripped my life apart in October o was just beginning to build capacity & thinking looking at a return to wk for 1st time in 10yrs . Now I’m struggling to want to live .. I’m not suicidal but I don’t care if I die .. my future is bleak I cannot cope with such injustice .. I’m better off dead 💀
I’ll never submit to an NDIS Dr assessing me .. that system doesn’t in ins industry & it ain’t going to wk for ndis ! My drs reports are enough evidence
Sorry I couldn't understand the dialogue, it's there a way to listen with captioned text? Thanks, great topic keen to listen.
Press or click on the cc button in the upper right hand corner.
UA-cam itself doesn't support listening to closed captions, but sometimes if you look at the accessibility settings of the device you are using, you may be able to activate audio description which can read the closed captions.
Why anybody mentioned Circo over $50 million in two year the first two years? I can’t remember.