Alannah Mactiernan (Perth, Australian Labor Party) Share this | Hansard source

I am pleased to rise to support this legislation here tonight—the National Disability Insurance Scheme Amendment Bill 2016—and basically to lend my support for the National Disability Insurance Scheme generally. During my time in parliament I do not think I have had much of an opportunity to comment on it, but I will say that this is an incredibly important scheme. I guess I became very much aware of this as an issue when quite some years ago—probably more than a decade ago—I was adopted as part of an 'adopt a politician' scheme in Western Australia that the Disability Services Commission was running there. A family with a child with a disability would adopt a politician and invite that politician into their lives to have them understand exactly what managing the disability meant for the child and for the family. I have to say, I thought it was a brilliant scheme. In my generation particularly, people with disabilities were shunted away to special schools. We had very little exposure to people who had disability, and I think it led to an entirely unhealthy 'us and them' culture and reduced the empathy and compassion between people with disabilities and the rest of the community. It was very good when we reversed those sorts of policy settings. But still, if you have not really had a personal experience, very often you fail to understand just how profound the problems are.

So, a family from Seville Grove adopted me. Watching as they did their absolute best to provide for their son, Daniel, who was a severely autistic young boy, and seeing him grow into a young man, and watching the difficulty they had in trying to get him into appropriate schooling and then to provide appropriate opportunity for him to do something after he left school, really opened my eyes to the nature of the problem we had, and indeed those of many of the politicians in Western Australia and around Australia. I am very pleased that under Labor, with bipartisan support—and I particularly acknowledge the role of Bill Shorten and Jenny Macklin in this—we did grasp the mettle and say that we have to do something here, that this cannot be a case of pass the parcel where one group of people has this problem and the rest of us do very little to contribute to help them. So, I think the fundamental principles are right.

I want to use this occasion to express my concern about what is happening in Western Australia. I am aware that sometimes schemes that are developed in the east are not necessarily suited to particular circumstances, such as our population structure in Western Australia. So, I thought it was very interesting and appropriate that two different models were allowed to be trialled in Western Australia: the state model and the federal model. The understanding was that there would be a report—an independent evaluation of both of these systems—which would be made public before a decision was made in respect of Western Australia as to which model would be put in place.

So I was deeply concerned when just a couple of months ago, before the trials had finished and certainly before any independent report had been released, the state government made a final decision to go with the WA model. Our concern is that people with disabilities and their families deserve to have a say about their future and they deserve to have the opportunity to look at these independent evaluations and comment on them before a final decision is made. I call upon Minister Porter to bring WA into line in this regard.

I also want to use this brief opportunity to talk about some of the problems that the NDIS would not resolve. There is the need, notwithstanding this rollout—and it will be a rather slow rollout of the NDIS—for us to have a vaccine injury compensation system at the same time. I am working on behalf of the Hammond family in Kalgoorlie. I think I have mentioned them before. The father, a FIFO worker on a mining site, was advised by hospital staff that he needed to have a pertussis booster before he could see his baby in the neonatal ward. He did that and, within three days, he suffered a permanent impairment. He went through a period of quadriplegia. I am glad to say that he has recovered somewhat from that, but there is no doubt that he is left with a permanent incapacity. It has now been acknowledged by the hospital in the negligence case that it was unnecessary to have the vaccination and that it would have been entirely ineffective because it would take at least two weeks to have any impact. To give him the injection and then admit him to the neonatal ward within two minutes was completely ineffective treatment.

The real point is that no-one really wants to necessarily even argue negligence in these matters. It has been commented on time and time again that, in a mass immunisation scheme, there are people who will have to take one for the team. There is absolutely no dispute that the science tells us that there are rare cases where there will be a severe adverse reaction. There is more and more evidence suggesting that might be linked to particular genetic factors, but obviously there is no doubt there will be rare cases.

In the immunisation community here in Australia, people like Clare Looker and Heath Kelly have had a variety of functions in public health, including when they prepared a very important paper on this issue. They were at the Victorian Infectious Diseases Reference Laboratory. Esteemed people within the immunology community, including the most eminent Western Australian, Fiona Stanley, and Dr Peter Richmond, the immunologist who wears many different hats in Western Australia, believe that we need to have a compensation scheme. They have looked around the world. Contrary to what the Department of Health unfortunately tell the Minister for Health and other people—that these schemes are only introduced where they have mandated vaccination—is simply not correct. In addition to that, one might argue that, given the latest provisions that we have introduced through the No Jab, No Pay provisions, there is indeed an element of economic compulsion. Most of the schemes that have been introduced in 19 countries around the world have not been mandatory but on the active promotion of immunisation. Doctors Looker and Kelly in their report went through the 19 schemes and found them very effective and found that they have had a very significant role in helping to build trust. We know that a great deal of vaccine resistance and vaccine hesitance arises out of a failing of trust. Around the world is a preparedness to introduce a no-fault compensation scheme so that individuals who are disproportionately asked to bear the burden of a mass vaccination scheme and the development of herd immunity are not left carrying the burden alone.

We would certainly argue for a scheme, particularly the one that Heath Kelly tells me he believes is perhaps most suited for Australia, which involves a levy on the pharmaceutical companies. In the United States, this scheme has been in place since 1987. The levy per vaccine is less than US$1, and that has been able to entirely fund the scheme. We must look seriously at introducing this. It is a question of fairness. We talk about fairness with our No Jab, No Pay scheme—that you cannot take from the community unless you are prepared to get your child immunised. We know that has a particularly strong impact on people on low to modest incomes who are reliant on government subsidies. Vaccines have been a great benefit for this community, but we need to ensure that there is trust and there is fairness by ensuring that a person who is unintentionally harmed by a vaccination is not left to walk alone and that there is an expression of solidarity from the community for the introduction of access to a no-fault compensation scheme. I think this is entirely in accordance with the principles of the NDIS.

Vaccine injury is viewed as a special circumstance, different from other injuries. This is a case where individuals bear a burden for the benefit to the rest of the community of a recommended medical procedure designed to enhance public health. It is something that needs to be addressed conclusively and not simply left to the long-term rollout of the NDIS. I do hope that the minister is prepared to listen to the views of the immunology community. This is something that can be done in a way that is cost neutral. It would certainly save a lot of heartache and prevent a lot of the unnecessary and, at times, very difficult medical negligence cases that are currently undertaken. This really is not a situation of negligence. We are trying to shoehorn circumstances into negligence in order to get just compensation for people who have been injured by these vaccines.

I think the NDIS is a fantastic program. I hope we stick with it and ensure that it is introduced across this country, including in my state of Western Australia, in a way that will deliver real quality of life for people with disability.

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