05/06/2026
Last thoughts before the weekend.....
I was not going to talk about this here because I know it has been a very difficult couple of weeks for hundreds of thousands of people. I quietly acted in the background but the response I got to this today has made me want to share with our community.
A couple of weeks ago the federal treasurer dropped the budget. I would say delivered but I think many would agree that it very much felt like it was dropped from a great height creating a huge bang! The aftermath has felt like the bang was a volcanic type explosion leaving rivers of devastating lava flows to deal with for all or most Australians depending on who you are, who you know, how you work or what you own.
While the media was wrapped up from the Tuesday night budget explosion, the federal minister for health quietly slid into parliament new legislation to reshape the NDIS on the Thursday morning. Not even 48 hours after the budget. The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
Now you may not know this because the conversation has been heavily focussed on negative gearing and capital gains tax. However, if you are in any way involved with the NDIS as a participant, a family member, a carer, an advocate or a provider this new piece of legislation could feel like some kind of bomb went off! In that trying to come to terms with its 100 odd pages, it's deliberate and very severe cuts to participants and their life changing funding, its government decisions on what treatment a person has had to have or even the unimaginable powers that the minister will gain to be able to cut someone's plan budget up to 99%. It has been hard! I feel deeply for everyone impacted and the mental and emotional toll it is taking.
I don't think at 52 I have ever been distressed over a budget night but this budget with its $38 billion in cuts to the NDIS and in turn the legislation that followed have been incredibly upsetting and beyond overwhelming. I had headaches for days and my emotional regulation skills got a real workout. I will be honest and say that that weekend I was pretty angry for our most vulnerable communities.
The week the budget dropped we had some incredible achievements here with the EPM community. Massive wins for the people I work with that have taken loads of time and commitment and an insane amount of courage for them to achieve. But also after the legislation went in, quietly, like it kind of felt like shhh don't tell anyone, I'll just leave this here kind of thing. I then sit and hold space with people in extreme distress. Observing the fall out of the budget as the major trigger. So being on the front lines while Canberra did its thing with zero consultation with the disability community has hit really hard.
I have 52 years of lived experience in the disability community. I was born into it. I grew up not knowing any different. I know how difficult it has been to get support. I know that there has been no support to be had. And I know fighting that seems to never amount to anything to get some basic human rights met. I am a daughter who has seen this and listened to my parents over and over on these things.
I have had a very challenging couple of weeks like everyone else. But I chose to do something with my voice and lived experience. The senate called for an enquiry into the NDIS legislation and Australia had 2 weeks to respond. Just 2 weeks!!! How we went from the press club speech in April that said there will be co design, consultation and mentioned nothing about us without us to none of that is beyond me.
I today received a response from the prime ministers office acknowledging receipt of my communication. I read it as I was going into see my GP. When I said who it was from I got a what have you done with a concerned vibe. She has been part of my last 17 years. I understood her concerns. But I went straight into what, why, how this new legislation is going to impact people. That I can not sit back and do nothing when the government want power over what treatment someone with a disability has to have. Someone with physical/psychosocial disability must have had ###x treatment before they could even be considered for the NDIS. That is saying that any known including harmful treatments that the government sees appropriate a person will have to have and it doesn't matter if they don't think it is the right treatment for them, or if they can or can't afford it or even if it is available in their local area. For me I am thinking ECT or even time spent coming on or off medications in a locked ward. Even the zombifying medication I started my journey on. I can't sit back with my 52 years of lived experience and say nothing! I was then met with a wow look at your executive functioning go, well done, I see the you before all that stuff happened. That was a great thing to hear but it was also great to hear her views.
If all good people do nothing when they could do something then our most vulnerable Australians are going to have their voice, their human rights, their autonomy, their right to choose treatment that best meets their own personal circumstances or their right to be seen and be part of the community stripped bare. We can not allow this to happen.
We all agree fraud, crime, government waste ie ART ($60m in legal fees last financial year alone fighting to not give people their basic needs) needs to be stopped. But we must protect the human rights of our most vulnerable communities.
Thanks PM'S office for the response! I also received a response from 2 Senators but still waiting on my local federal member.......
Anywho that's my last thoughts for this week. I hope everyone has a wonderful relaxing long weekend. Self care in the garden for me for sure.
Kristy
