PWDA President’s evidence at Public Hearing into NDIS Amendment Bill

Last week President Marayke Jonkers presented evidence at the Senate Committe Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

On Wednesday 22 2024, People with Disability Australia (PWDA) President Marayke Jonkers presented evidence at the Senate Committe Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. The following opening statement has been extracted from the Proof Committee Hansard report of evidence taken before the committee.

“People with Disability Australia is the national peak cross-disability body in Australia. We also work internationally with the United Nations, looking at the UNCRPD being implemented within Australia. I come to you today from the lands of the Turrbal people on Meanjin country.

By far, the NDIS has been life-changing—although perhaps challenging for some of us to navigate—and we very strongly support it. What we can’t do is support the bill in its current form. We need to see this bill and any legislation changes happen when the NDIS review has been completed. We have reached this understanding by consulting extensively with our membership base, who find it very difficult to understand and support something when we don’t have an explanation of the assessment tools and the processes around how that becomes a budget.

This needs to intersect with the royal commission findings and the complete NDIS review. At this stage, our position therefore remains that we are unable to support the bill in its current format.

We do strongly recommend and encourage co-design with people with disability—meaningful co-design, which means a seat at the table while each of these decisions is being made. This is a once-in-a-lifetime chance to get this right and make life better for people who live with disability. Or, we would make life a lot worse.

People with disabilities have the biggest interest in making this scheme sustainable, because our lives depend on it. What you can’t see is that I use a wheelchair for mobility and rely on a lot of supports to live my daily life.

Before the NDIS, I was a triple Paralympian and won three Paralympic medals. My upper body then deteriorated, and I was not able to do anything for several years except lay in bed. I could barely push myself to the toilet. I had no funding and assistance. The NDIS gave me my life back. There was food in my fridge that I could heat up in the microwave and eat. I had access to physiotherapy. I even started doing recreational exercise that gave me more strength and independence. This is a life-changing scheme; we can’t afford to lose it. Our members, however, have huge concerns, if you read the final page on our submission.

In closing, I would like to share a story which is very embarrassing but illustrates the point of how dangerous it is to talk about stated NDIS supports and give them a label. We already have a list of what an NDIS support looks like. An NDIS support is something that is reasonable and necessary, and an individualised plan goes to the person who has their own very unique life. The current bill is beginning to look like it is homogenising people with disabilities because we can’t specifically spit out a system that says, ‘Everybody with a spinal cord injury needs.

The disability definition is, in fact, the interface between the person and our environment. Every single one of us has a different life we want to live, different needs, different supports, different dreams and different goals. So we need the funding to match that—to match the life that we want to live and that we need, so that we can have our own ordinary life, like every other Australian. We are not asking for magic rainbows and lollipops; we are
asking to be able to stay alive and live our life.

In that form, therefore, the ‘reasonable and necessary’ criterion that currently exists with the self-management checklist of 10 points works already. I ask senators in this hearing to consider why we need to go and state the supports—where we may take things away from people—when we could in fact be looking at: where is that going wrong? If it is in fact going wrong; maybe it is about people understanding how we invest in that, so people can have their individual lives.

Some stories from me—I am unable to lift my arms above my head. I need to have my hair washed. We could spend over $100 for a two-hour minimum shift for a support worker to do that, but I won’t find one on short notice when I suddenly need to be in a Senate hearing or on television as a journalist. I will be able to go to the local hair salon, and for about $35 have the apprentice do it, but certain beautician services are probably not going
to be on the list—and, depressingly, it says ‘groceries’.

While I was preparing to host the members forum that got the data which you’ll find in the document we presented, I experienced a continence issue. I don’t want to be speaking about this on Hansard, but the situation calls for it. I live with a spinal cord injury. This is something that’s a normal part of my daily life. But a month’s worth of supplies got used in trying to clean that up. It’s actually cheaper to buy these at the supermarket, but ‘groceries’ is on the list of things that are no longer allowed to be purchased. So, on our costs, if this proceeds, it will cost the government more money. This is the key to why we need co-design.

I would call for co-design to be written into this legislation so that people have a seat at the table when every part of this is being decided. Finally, can we ask ourselves: what is the hurry in getting this legislation through now, rather than working with people with disabilities? Not only do we have the biggest interest in this working, because it keeps us alive; we understand it like the back of our hand. We live it. Just like the example of knowing baby wipes are cheaper at supermarkets, we know all the ways we can actually stretch the money further and make the system work.

I highly recommend that Senators consider not accepting the bill in its current format but waiting until we have all the information required. Without the rules, without the assessment tools, without an idea of what the new version of NDIS 2.0 looks like, it’s very difficult for us and our members to decide what it looks like. I thank you for the opportunity to speak with you today.”

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