where to from here NDIS changes.

This is a post I've been delaying, but here are my thoughts on the NDIS changes. My thoughts are many and varied, but the reforms are a very mixed bag. People need to understand that the reforms came through for a reason, and that reason is the misuse of the system and instances of fraud.

What's been amusing to me is seeing the “advocates” coming out of the woodwork—people I’ve never heard of—claiming to be allies with us. There are some amazing advocates out there, both on the internet and worldwide, but some of these newcomers are blogging on LinkedIn about “foundational support.” I admit, I misunderstood at first, but they were talking about non-NDIS support. The big question is: where is the money coming from if it's for people who don’t qualify for the NDIS? Is it going to come from the state or federal government? The NDIS was supposed to level the playing field, and that involves having barriers to entry. We need to differentiate between a health condition and a disability.

When it comes to advocacy, there’s a wide variety of roles and approaches. Not everyone with a disability wants to be an advocate, and that’s okay. Some people get wrapped up in the advocacy bubble, focusing only on that world. However, there are incredible advocates out there who make meaningful changes, pushing for reforms and better support. It's important to recognize that advocacy can take many forms, and not all of it happens in the public eye or on social media.

One important thing to clarify is that most day-to-day support is foundational. Foundational support refers to the basic, everyday assistance people need to live independently, like help with personal care, transport, or household tasks. In contrast, therapeutic support is specialized and targeted, focusing on interventions for specific health needs or skill development. Therapeutic support staff, such as those providing mental health care or behavioral interventions, require specific training in mental health. This distinction matters because it highlights the different levels of expertise and qualifications needed for these roles.

This can be hard for people to wrap their heads around, and I get that. Sometimes it takes years to get a diagnosis. And don’t even get me started on self-diagnosis and how harmful that is to the disability community. I’ve written a Substack post on misusing clinical terms, and this is a big issue on TikTok, leading to more misinformation spreading on the internet.

In the end, I think the reforms were needed. However, we need to pay attention to what wasn’t talked about: independent assessments. This topic seemed to get quietly pushed through, but it’s going to have the biggest impact of all.