Cruel and exhausting. Thank you for sharing your experience.
I hear stories where people have ended up in complete humiliating isolation as adults because they lack family and NDIS, including from my GP.
Family can do so much but when people become adults they also need to see other people and participate in broader life and the current reality is that help is needed to make that happen. Our society has not evolved in a way that naturally provides this kind of inclusion in big urban centres.
I worry the govt are going to determine “permanent and significant disability” as someone who can’t go to toilet or feed themselves - but for eg, those who can manage those things but are still limited from broader participation due to intellectual disability, or severe communication difficulties will be deemed “fine”.
This is not the test that the UN convention on the rights of people with disabilities set in terms of maximising human rights a fundamental freedoms.
My sister was severely disabled at age 2 - medical negligence. My parents were told they had to put her into full-time care. 4 hours drive from home. They were told to think of their other child. This was 1972. My parents had battles with the system over the years. I was protected from much of it. Social workers actually existed then so my mother had someone to talk to. My sister died in institutional care - medical negligence again.
When the NDIS was introduced I thought finally families would be recognised as a unit that needed a system working for them not against them.
Looks like we are back to a shitshow of leaving the most vulnerable in society on the fringes while pretending to care.
I'm sorry this happening. I really thought we would have matured as a society.
I can imagine that as cruel and appalling as this is, as parents your worst nightmare is what will happen when you can no longer advocate for your child.
As a 78 year old, with matters like this and also aged care and homelessness (I’m holding my breath when I write this) I sometimes wonder if our governments wouldn’t rather send we “problem” citizens a pill to solve their funding concerns permanently. We’re made to feel so worthless.
Thank you for sharing this, Greg. I'm so sorry you're going through this. The absolute idiocy of some of the hoops you need to jump through ("Calling to check if she still had Down syndrome"). For God's sake.
Mate so sorry to hear of your family's situation a lifetime struggle for all.
The NDIS is a great scheme/idea and as a society we should help all who need help, but we see again the elephant in the room which is being ignored.
A lot of people are taking the NDIS and the Australian tax payer for a ride, dodgy claims, certain groups just taking money with no responsibility and it seems very little oversight to the taxpayer who is funding it and the sad part is very little repercussions for ripping the system off. (see below)
While the weak or infirmed are made to pay as a result of the dishonest action of so many.
The hard part is it is just unsustainable if the rorting of the NDIS system continues.
Of course the biggest offenders could be the doctors and the pharmaceutical companies who just rort the system for their own benefit, if you go to a surgeon you will certainly need an operation even if you don't.
Cruel and exhausting. Thank you for sharing your experience.
I hear stories where people have ended up in complete humiliating isolation as adults because they lack family and NDIS, including from my GP.
Family can do so much but when people become adults they also need to see other people and participate in broader life and the current reality is that help is needed to make that happen. Our society has not evolved in a way that naturally provides this kind of inclusion in big urban centres.
I worry the govt are going to determine “permanent and significant disability” as someone who can’t go to toilet or feed themselves - but for eg, those who can manage those things but are still limited from broader participation due to intellectual disability, or severe communication difficulties will be deemed “fine”.
This is not the test that the UN convention on the rights of people with disabilities set in terms of maximising human rights a fundamental freedoms.
And all done because apparently if they don't another govt might do something "worse" later
My sister was severely disabled at age 2 - medical negligence. My parents were told they had to put her into full-time care. 4 hours drive from home. They were told to think of their other child. This was 1972. My parents had battles with the system over the years. I was protected from much of it. Social workers actually existed then so my mother had someone to talk to. My sister died in institutional care - medical negligence again.
When the NDIS was introduced I thought finally families would be recognised as a unit that needed a system working for them not against them.
Looks like we are back to a shitshow of leaving the most vulnerable in society on the fringes while pretending to care.
I'm sorry this happening. I really thought we would have matured as a society.
I can imagine that as cruel and appalling as this is, as parents your worst nightmare is what will happen when you can no longer advocate for your child.
As a 78 year old, with matters like this and also aged care and homelessness (I’m holding my breath when I write this) I sometimes wonder if our governments wouldn’t rather send we “problem” citizens a pill to solve their funding concerns permanently. We’re made to feel so worthless.
Thank you for sharing this, Greg. I'm so sorry you're going through this. The absolute idiocy of some of the hoops you need to jump through ("Calling to check if she still had Down syndrome"). For God's sake.
Thanks Nelli
Mate so sorry to hear of your family's situation a lifetime struggle for all.
The NDIS is a great scheme/idea and as a society we should help all who need help, but we see again the elephant in the room which is being ignored.
A lot of people are taking the NDIS and the Australian tax payer for a ride, dodgy claims, certain groups just taking money with no responsibility and it seems very little oversight to the taxpayer who is funding it and the sad part is very little repercussions for ripping the system off. (see below)
While the weak or infirmed are made to pay as a result of the dishonest action of so many.
The hard part is it is just unsustainable if the rorting of the NDIS system continues.
Of course the biggest offenders could be the doctors and the pharmaceutical companies who just rort the system for their own benefit, if you go to a surgeon you will certainly need an operation even if you don't.
https://www.abc.net.au/news/2024-05-24/ndis-rorts-by-organised-crime-worse-than-feared-watchdog/103888752
One issue though is the claims of rorting are being used to justify the cuts, and the evidence of actual rorting is pretty slim https://thepoint.com.au/opinions/260604-are-we-being-misled-about-ndis-fraud-yes-we-are