Jordon Steele-John (WA, Australian Greens) Share this | Hansard source

[by video link] In respect of the government response to the Senate Community Affairs References Committee report Support for Australia's thalidomide survivors, I move:

That the Senate take note of the document.

I would like to begin my contribution this evening by celebrating and giving special mention to some of the incredible human beings who worked tirelessly over the last six years or more to bring about the package that was announced in the budget this year that finally provides compensation to and recognition of thalidomide survivors on behalf of the Australian government as well as provides a pathway towards memorialisation and ultimately a national apology.

First among those people is someone who deserves a damn sight more than a mention in the Senate, to be honest with you. If there's anyone out there looking for candidates for Australian of the Year, I would submit that Lisa McManus and her husband, Andrew, should be top of that list. For the best part of 10 years, Lisa and Andrew led a group, the Thalidomide Group Australia, that campaigned tirelessly at their own expense, knocking on every parliamentary door, visiting countless electorate offices, having meeting after meeting with multiple ministers, advocating for their community and demanding that the injustice of thalidomide be rectified by this parliament in line with actions taken all over the world. Lisa, Andrew and their entire family have made incredible sacrifices in order to bring this package into being and, whatever the passage of time reveals the quality of the government's package to be, the fact that there is a package at all is a great credit to Andrew, Lisa and their entire family and to the resilience that they have shown.

I also want to mention Trish Jackson, a tireless compatriot in that work over the years, and also Monica McPhee, over here in WA, and the fabulous Lou, who sent a wonderful bunch of flowers to my office recently. Thank you, Lou, if you're watching along tonight.

What we see when we look at the disaster of thalidomide is nothing more or less than the worst pharmaceutical disaster in the history of our country. It was the worst regulatory failure in the history of Australia. It resulted in survivors struggling for the rest of their lives against severe impairment and against the terrible discrimination that comes from it. All around the world, governments were forced by survivor and advocate groups to reckon with the reality of their failure, to compensate, to apologise and to recognise survivors and their families. Australia failed, decade after decade, to follow the UK, Canada and many other countries in providing this kind of recognition and support. It took the work of survivors here in Australia to bring the government to a point of recognition that this action needed to happen. I am thrilled to have seen some of those mechanisms created in response to their tireless advocacy and their work.

It is important in this moment that we examine in detail what the government has put forward in the package that it outlined in the budget. There are mechanisms by which lump sums may be made to survivors. There are mechanisms by which ongoing health needs may be met and for other extraordinary forms of assistance. There are mechanisms by which ongoing annual payments may be made to thalidomide survivors. As well, there is a commitment from the government to apologise for their role in the disaster and to create a national memorial commemorating the impact on survivors and their continual resilience. These are elements to be welcomed. However, when we lift the hood on their detail, we find, as we often do, the devil within.

I am particularly concerned that the level of annual payment made to survivors appears to be significantly less than the level of annual payment made to survivors by the distributor of thalidomide. There can be no excuse for the government of this country to pay a dollar less to survivors, in real terms, than is being paid by the corporations that were part of this disaster. I was very disappointed to hear from survivors who disclosed to me that the payment levels outlined by the government are, in some cases, between $25,000 and $45,000 less than they have received from the corporate compensation elements. That is not good enough. There needs to be urgent clarity around the guidelines that will govern and shape access to the medical assistance fund and to the extraordinary assistance fund. Survivors need certainty on how they will access these mechanisms and what they will and won't be able to claim for. The government has made some big promises in this space. They have talked the language of broad scope, but survivors need to see the details, because they need certainty.

Survivors need to know exactly when the government will be apologising for this disaster so that they can plan their attendance. So far this information has not been communicated to survivors, leaving them in distress because they don't know exactly when they may need to appear in Canberra, or wherever, for the moment of national apology. It is not something that people will be able to attend at the drop of a hat. When you have significant disabilities, when you have access requirements, you need to plan ahead. Also, there is the issue of the national memorial, which needs to be planned in detail with survivors. It is a project that I understand is being led by the National Capital Authority, which is good to see, but the process of communication and co-design needs to be present in the creation of this national memorial.

Finally, let me share with the Senate the fact that the case for recognition of thalidomide survivors in Lisa McManus and the TGA's information pack, which was circulated to all senators and members, was one of the first pieces of information that arrived in my office when I entered parliament, the best part of three years ago. Immediately upon reading it I was struck by the clarity of both the moral and the policy cases for action. I was also dismayed by the amount of time that Lisa and survivors had had to spend attempting to convince parliament to take action in this space. As we sit here, six years on from the beginning of that campaign, the beginning of those efforts, it falls to all of us, as legislators, to reflect upon whether it should be this hard, whether you should have had to spend six years and thousands of dollars of your own money, to get the attention of your elected representatives to persuade them to take action on such a clear case of national failure and the need to redress the wrong. I thank the chamber for its time.