Why the NDIS matters

I’m travelling from Melbourne to Lutruwita (also known as Tasmania) in the middle of June 2026. It’s a work trip, with a few days of sightseeing tacked on.

I want to be excited about it, and to some extent I am. But my greatest feelings are anxiety and guilt.

Anxiety because I’m taking my manual wheelchair to Tasmania, and I’ve booked support workers for almost every day that I’m away. I’ll be using more support worker hours in that one week than I’d usually use in a month. Will my NDIS budget stretch that far?

Cerebral palsy manifests differently in everyone who has it. In my case, it means I can’t push myself in my manual wheelchair, nor can I safely drive a car. Public transport exists in Tasmania, but it’s infrequent, often inaccessible and notoriously unreliable. The same is true for wheelchair accessible maxi taxis. So, support workers are the most practical solution. 

Logically, I know that it’s my right to use support workers to help me access the community, including for a work or personal holiday. But logic crumbles in the face of internalised ableism, media spin and government rhetoric. 

I feel guilty booking support workers, imagining the contribution I’m making to the “overspend” of the NDIS. I feel guilty making NDIS claims, pondering each time whether I can or should wear the cost of my support worker hours instead. 

I often think of how a co-worker responded when I told her of my guilt: “the system is designed to make you feel that way. To make us feel like we don’t deserve good things.” And it’s not just the system, it’s our leaders, too.

Earlier this year, NDIS Minister Mark Butler announced the biggest changes to the Scheme since it was introduced. One of the main changes was that each participant’s budget for social, civic and community participation will be cut in half. That’s the budget that I and others would use for things like, say, support to visit Tasmania. When the cuts come into effect, I won’t be able to take holidays like that unless I pay for the support worker hours myself. And I am fully aware of the privilege I have in being able to afford a holiday at all. Fully aware that for some people the social participation budget means the difference between being able to leave the house or not, to work or not. And that’s not all.

Over 100,000 people are going to be removed from the Scheme. They’re supposed to access Foundational Supports which, as at the time of writing, don’t exist yet. It feels yuck to say it, but CP is perhaps the most ‘vanilla’ and well-known disability, so those of us with it aren’t likely to be kicked off the Scheme, at least not at first. But we really don’t know who they’re going to target, let alone why or when. I’m scared, and I know many fellow disabled people - with and without CP - are too.  

With consultation on the latest NDIS Bill recently closed, there’s not much we can do except wait. During this period of uncertainty, I’m using all the coping skills I’ve built over years in therapy. I’m going to pat my cat, write in my journal, call my friends and feel my feelings.

Most of all, I’m reminding myself that Disabled people deserve good things. I deserve good things, and you do too.