NDIS and vaccination

23 August 2021

Thank you, Deputy Speaker. I may just take a moment to pull up some of my notes that I was intending to use to speak on this a little bit further down the track on the speakers list. But this is a really important issue. The NDIS was meant to transform people's lives. I spoke with people before the scheme was in place about their expectations for it. Greta was a fantastic advocate for it. She has cerebral palsy, she's in a wheelchair and she was one of those who could see that, as a young woman, it could provide a pathway to independence for her. And indeed it has. I was just messaging her today, actually, having seen that she has had her COVID vaccination. I was speaking to her about what she's finding. And of course what we do know is that only around about 26 per cent of participants on the NDIS are vaccinated. And this is a group of people among the most vulnerable who were in the first two phases—in 1b—of the rollout; they may have even been in 1a. But they are right at the start of the rollout. Yet we have an appallingly low COVID vaccination rate for them. Not only that, but many of them are finding that their carers have not been able to access vaccines. One said to me, 'All the carers registered on the government's website months ago but haven't received any information about how they actually get a vaccine.' What all that says to me is that we see this legislation that's meant to improve people's lives; however, the reality is that so many of them are left behind.

I think that the biggest concern for people who rely on the NDIS is that promises are made but promises are not necessarily kept. I want to take people back to the months of anxiety that were created around independent assessments, when people were told that things would be totally changed and that all the medical stuff that had happened would actually be thrown out the window when the independent assessments would come in. It was advocacy from the sector, advocacy from people like me and advocacy from the participants themselves that has meant that we are not currently having a discussion about that—because that was going to completely turn around what people's expectations and hopes were for the scheme.

It wasn't done in a consultative way. It was done without any consultation with the sector. It progressed without any consultation with the sector. For goodness sake, the very people who have had to fight for absolutely everything, for every improvement that they have had in their lives and for every bit of support that they get, were then made to fight yet again by this government—to fight against something that should never ever have been put forward in the first place. I saw people broken by that. These people had been resilient and had advocated and were happy to work through the challenges of a scheme, but that really broke them and pushed them to the edge.

That is what we see when we look at the way this government has treated people with disabilities and the people who care for them—and when I say 'the people who care for them', I mean their families as well. I know a mum who is partway through a couple of weeks of lockdown with a daughter who has autism because of being a close contact for COVID. The mum has been in tears, and there have been lots of tantrums from her daughter. That's the sort of thing that people are having to go through. I don't think any of us have any understanding of what that must be like. And there's very little additional support for people. We were very clear that we needed to see changes made. What is coming through my office right now is that the decision-making processes for the NDIS have slowed right down—that they have slowed yet again to a crawl—and people who are waiting for a decision, waiting for an appeal or waiting just to get information about where something is at, are finding that it has got really, really slow.

Lockdown has taken away all our choices. That is even more profound for people whose lives had some richness in them because they could go out to programs, but all that has been taken away. So their choices have been taken away. There are going to be people who possibly find it hard to get back to what they had. It's hard when you lose that social contact and the things that were built up over a period of time and then the doors are just slammed shut. Obviously, having high levels of vaccination would really make a difference.

I also want to talk about what I'm seeing with a constituent in New South Wales who's facing the challenge of rapid antigen testing when you're not in a local government area of concern. The Blue Mountains and the Hawkesbury is not a local government area of concern. We're in lockdown, but not the tightest lockdown—not with curfews at night; not with security guards roaming around; and not with intense vaccination hubs happening either, for that matter. Heaven forbid we should try and get ahead of the curve! So we are in a limbo. We're seeing cases rising, and one of the reasons they're rising is that workers from local government areas of concern do come into our electorate to work. This is where disability care fits in—employees from local government areas of concern who have not been able to be vaccinated are required to have rapid antigen testing. That's just been announced, and it all comes into effect really fast. The providers are saying to me: 'We can't even work out how to do this. It's not legal to do it without a healthcare professional there, so how do we get a healthcare professional to every one of our group homes to try and do this?' So the practicalities and logistics of these announcements are going to create even more problems and challenges for disability care.

One of the things that this legislation looks at is those for whom their whole care is entrusted to the NDIA. The NDIA is the one that oversees and has overseen the quality of the care they get. We have seen catastrophic failures because of the structure that was put in place, so we absolutely need to see these improvements come forward. We need to make sure that what happened in South Australia isn't repeated. What we also need to see more broadly is not just that quality of care is regulated but that we are training people up appropriately to provide the quality of care that is needed.

Every time I look at this government's policies to fix things, the bit that's always missing is the workers. The bit that's missing is the skilling up of the workers and the support of their ongoing education so that they are building and expanding their skills and we are constantly improving the quality of care that people receive and that people deserve to receive. The quality of care becomes a challenge when you haven't got enough carers. So building up the volume of carers is really key, but so is continuing to allow them to progress so they actually have a career path. I really thank the Australian Services Union for the work they have been doing over many years to look at how we do this.

I want to come back to vaccination rates and the vaccination process for people with disabilities but also for their carers. The Blue Mountains and the Hawkesbury is an area of 4,000 square kilometres—not as big as many electorates, but for a city electorate it's pretty big. Yet there have been decisions made to date that require people in my electorate of the Blue Mountains and the Hawkesbury to access their vaccination either at their GP, or, now, if they're able to have AstraZeneca, at the pharmacy, although we're still seeing slow supplies. My GPs tell me that sometimes the Pfizer supplies they've been promised and have taken bookings for simply don't turn up. A whole week's supply just doesn't turn up.

This is the moment where I really want to give a shout-out—yes, to the GPs for the work they're doing and to the practice managers for the work they're doing, but also to the receptionists, who are the people taking the phone calls in GPs' offices and clinics. They must be the heroes. I know we get desperate emails and desperate phone calls, but they would be absolutely smashed with phone calls from people saying, 'This is my situation. I have a disability,' or 'I have a daughter with a disability,' or 'I have a carer coming in'—all those sorts of circumstances. We all know those people ought to have been vaccinated by now under the rollout plan. I love plans, but I like them much better when they're actually delivered and not just some future promises. These promises and commitments to people that not only would they be able to be vaccinated but the process wouldn't be as onerous as it is have been unfulfilled.

I don't know if anyone in this place has tried to book a vaccine. If you're in the Blue Mountains and the Hawkesbury, there isn't a hub to do it at. You have to phone every single GP that you can, along with lots of other people, just to see if you can go on a waiting list—these are my circumstances; can I do it?—or jump online, and the online process takes you back in circular motion because there's nothing available to book yet. These are the challenges people are facing. For people with a disability for whom life has certain challenges already, we should be making it easier. For the Blue Mountains and the Hawkesbury, we should be taking the services into those areas. We should be travelling to the furthest places within the communities. People say, 'You've got quite good vaccination rates.' Yes, we do. But the people who are hardest to vaccinate are those who haven't done it yet, and they are in the more remote or transport-challenged areas. There is no public transport in most of the Hawkesbury, if you're not on the train line. I think we've got five stops in my electorate. It takes you to Blacktown. It doesn't even take you to Penrith, which will ultimately be our nearest hub. It takes you into the hotspots, if you want to do it by public transport, or you can go to a hotspot if you want to drive there. We have to go into the hotspots in order to find a mass vaccination hub, which is where people are being steered to. They're being told, 'If you can't get into a GP, go for the hub.' But there just isn't one near enough.

What is missing is this idea: you could take mobile teams and reach into these communities. In fact, you could probably get quite a wide penetration of that community with the vaccine if you went there, because it would be easy: your neighbours would be doing it; you could take anyone along with you. It would really make a difference. It's time for this government to think about creative approaches. We haven't had the vaccine supply. That has been our No. 1 problem. Yes, if we hadn't had leakages from quarantine, it wouldn't have been such a race, but we didn't have quarantine that held. We all know that. We still don't have it. We've just got plans for it. We still have leaky quarantine. We still don't have enough supply, but, even when we do have enough supply, we do not have the plans to take it into the community, particularly to places where you would be able to do large numbers of people with disability. We need to do for them what we did with aged care. The difference is we need to do the carers as well. That's the only way that people with disability will be looked after.