Our needs are real. Our needs are urgent. And our needs are immediate.
4.1
Throughout this inquiry, the committee has received evidence about the profound effect that thalidomide has had on the lives of survivors and their families. Thalidomide has left some of them with malformed limbs, robbed them of opportunities and has left them with progressively worsening health outcomes and severe pain.
4.2
In other countries, governments have recognised that in allowing products containing thalidomide to be sold they failed some of their most vulnerable citizens: pregnant women and their unborn children. In a bid to remedy their error and to apologise for the pain and suffering they caused, governments around the world have provided both financial support and non-financial support to maintain survivors' independence.
4.3
During the course of the committee's inquiry, other countries around the world have either decided to support their thalidomide survivors, or have increased their support. In January 2019, Canada doubled the size of the lump sum it offers survivors and increased the size of its Extraordinary Medical Assistance Fund to $1 million CAD per year. In February 2019, Belgium announced a new scheme to support its thalidomide survivors. Australia's refusal to provide special measures for its thalidomide survivors is inconsistent with supports being provided in other countries.
4.4
With the exception of tax relief, the Australian Government has not provided financial assistance to thalidomide survivors. The Australian Government has not provided wheelchairs, or modified cars, or implemented special programs to provide assistance.
A moral obligation
4.5
The committee considers that the Australian Government has a responsibility to support Australia's thalidomide survivors. In Chapter 2 the committee noted that both the Australian and state governments had a role to play in the regulation of drugs in the early 1960s. The Australian Government was responsible for regulating importation of pharmaceutical drugs, while the state governments were responsible for regulating distribution and sale.
4.6
The Australian Government was warned as early as 1949 that it required additional controls on drugs that were being imported into Australia. Those controls were not forthcoming. At a similar time, the United States of America and other countries already monitored drug safety. While the Australian Government worked on labelling and purity, it did not monitor the health effect that drugs might have on people, including unborn babies.
4.7
When it became clear in November 1961 that thalidomide was linked to birth defects and Distillers withdrew the drug from sale, neither the state governments nor the Australian Government took swift action to ban the importation of thalidomide or to prohibit its sale. Unlike other countries, no efforts were made to recall and destroy the product that was in doctors' clinics or pharmacies.
4.8
If the Australian Government had acted more swiftly, it has been estimated that approximately 20 per cent of Australia's thalidomide survivors may not have been affected.
4.9
To date, the Australian Government has not accepted that it played a role in the thalidomide tragedy. For more than 50 years, the Australian Government has left thalidomide survivors without support and has maintained that Australia's constitutional arrangements, as they were understood at the time, mean that the Australian Government should not be held responsible for the thalidomide tragedy. The committee does not consider that joint responsibility during the 1960s absolves the Australian Government of its moral obligation to Australia's thalidomide survivors.
Apology
4.10
The committee recognises that the Minister for Health has announced the approval of a memorial garden at the National Arboretum in Canberra. In his statement, the Minister for Health acknowledged that the thalidomide tragedy was 'outside of the control' of the mothers of today's survivors. The committee recognises this is a welcome first step towards acknowledging the Australian Government's role, but thalidomide survivors both need and deserve 'more than just a plaque in a park'.
4.11
Thalidomide survivors advised the committee that they consider an apology to be important both for themselves—for the years of inaction and lack of support—and for their mothers, many of whom blamed themselves for something that was beyond their control. An apology is an opportunity for the Australian Government to shoulder some of the responsibility for exposing these women and their children to danger. The committee considers that the Australian Government owes thalidomide survivors and their families a profound apology.
4.12
The committee recommends that the Australian Government apologise to Australian thalidomide survivors and their families.
Direct financial support
4.13
In the interim report, the committee recognised that the payments that thalidomide survivors had received to date were not meeting their specialised needs. The committee notes that the payments made by Diageo to both groups of thalidomide survivors have been calculated based on legal factors, including a consideration of what Diageo would be willing to pay.
4.14
As the Diageo ex gratia payments are not indexed to inflation and survivors' needs are growing, those payments are becoming inadequate to meet their increasing needs.
4.15
The Diageo ex gratia payments will expire in approximately 2028. Diageo has not ruled out the possibility of providing further financial support, but has advised the committee that any further financial support will not be of the same magnitude. Diageo advised the committee that in other countries governments have also made significant financial contributions to thalidomide survivors. Diageo told the committee that it would only consider further compensation after it understood the Australian Government's plan.
4.16
The committee notes that other countries around the world are taking steps to increase the level of support that they offer to thalidomide survivors.
4.17
The evidence the committee received throughout this inquiry demonstrates that thalidomide survivors have never received appropriate support to manage their complex healthcare and disability support needs. In the committee's view, direct financial support for each of Australia's thalidomide survivors by the Australian Government is long overdue. In addition, a mechanism must be developed to facilitate payment to those thalidomide survivors who have not yet been formally recognised.
4.18
The committee notes that in other countries thalidomide survivors have been paid a lump sum when they have first been recognised. In Canada and Germany this has been recognised as a payment to compensate for previous underinvestment in their health needs. In Belgium, a lump sum will be provided as compensation for pain and suffering.
4.19
The committee considers that the Australian Government should provide a lump sum payment as compensation for the considerable pain and suffering thalidomide has wreaked on survivors and their families. The committee considers that the lump sum payment should be granted to the thalidomide survivors who were recognised in the 1970s, the group who were recognised through the more recent class action and any survivors who are identified in the future.
4.20
The committee notes that the Thalidomide Group Australia and other witnesses who appeared before the committee considered that tiered payments were a fair way to allocate payments. Provided people who may not yet be recognised as thalidomide survivors are able to be assessed on an equal basis with those who have been recognised, the committee considers that a lump sum payment that is scaled according to survivors' level of disability is highly appropriate.
4.21
The committee notes that this amount should not reduce the benefits or entitlements that thalidomide survivors are otherwise entitled to and should be exempt from income tax and the social security income test.
4.22
The committee recommends that the Australian Government provide all Australian thalidomide survivors who have been recognised by Diageo with a lump sum payment on a scale according to their level of disability that is exempt from income tax and the social security income test.
4.23
The committee recommends that the Australian Government provide any person who has not yet received financial compensation with a lump sum payment as soon as they are recognised as a thalidomide survivor on an equivalent basis with those thalidomide survivors already recognised with a similar level of impairment.
4.24
In other countries, governments have provided thalidomide survivors with an ongoing payment to provide them flexibility to invest in their needs as they see fit.
4.25
The committee received evidence that thalidomide survivors have very particular needs that may not be understood by someone that does not have a thalidomide injury. For example, in the interim report the committee noted that providing air conditioning or heating could potentially mean the difference between a thalidomide survivor being able to dress themselves and needing a carer to dress them.
4.26
In the United Kingdom, the health grant has provided thalidomide survivors with the flexibility to invest in what they need to manage their injuries and maintain their independence. In Germany, the increased annual payments meant that thalidomide survivors could receive the support they needed to live with dignity and manage their pain.
4.27
The committee notes that any ongoing government payment that is provided in Australia will be paid, at least initially, in conjunction with the Diageo ex gratia payments. The committee has already noted that the ex gratia payments are becoming increasingly inadequate because they are not increased with inflation.
4.28
The committee considers that ongoing annual payments will need to be indexed, not just so that they keep pace with inflation, but to take into account thalidomide survivors' increasing health needs.
4.29
The committee recommends that the Australian Government provide all Australian thalidomide survivors with an ongoing annual payment to provide them with flexibility to purchase the services they need. The committee considers that this annual payment should be increased over time to reflect thalidomide survivors' increasing health needs.
Coordination centre
4.30
In Japan, Canada, the United Kingdom and Germany there is a centre, company, trust or foundation that provides payments and coordinates services for thalidomide survivors. In the interim report and in the previous chapter the committee noted the wide range of services that those centres provide and the benefits they provide to thalidomide survivors.
4.31
These centres provide a central point where thalidomide survivors can access support and where they can obtain reliable information, including about health professionals with an understanding of thalidomide injuries and who they should approach if they need modifications to a house or car to accommodate a lower level of mobility.
4.32
In the interim report, the committee asked the Department of Health to work with the relevant colleges to identify health professionals who have expertise in treating thalidomide injuries or would be prepared to develop a level of expertise in treating thalidomide injuries. Once those practitioners with relevant expertise have been identified, the committee considers that the central assessment and coordination centre could refer thalidomide survivors to the specialists in that network as needed.
4.33
The committee considers that there needs to be a way for a person who may not have been recognised as a thalidomide survivor to be assessed and share in the same financial and non-financial support as other thalidomide survivors. Even since the committee released its interim report, a number of people have approached the committee to ask how they can have their injuries assessed. The committee considers that a central coordinating point could facilitate and make decisions about eligibility to receive payments and other services based on international best practice.
4.34
The committee considers that the Australian Government should establish a centre to disseminate information and coordinate services for thalidomide survivors and currently unrecognised survivors.
National Disability Insurance Scheme
4.35
Throughout this inquiry the committee has noted that the National Disability Insurance Scheme (NDIS) does not appear to work for thalidomide survivors. In particular the committee has noted issues regarding the adequacy of the packages and whether survivors' previous payments were being taken into account to reduce the level of support that may be available under the NDIS.
4.36
In the previous chapter the committee commented that it would be inconsistent if payments that were made to assist thalidomide survivors to purchase additional supports and were exempt from income tax and social security income tests were then considered in calculating the level of support available under the NDIS.
4.37
The committee notes that there is scope for the Chief Executive Officer of the NDIA to ignore the reduction amounts in certain cases. The committee considers that matters regarding compensation payments and any reduction amount involving thalidomide survivors should be referred to the Chief Executive Officer, or their delegate, for consideration.
4.38
The committee considers that the National Disability Insurance Agency should implement a policy to refer matters relating to compensation payments and reduction amounts involving thalidomide survivors to the Chief Executive Officer, or their delegate, for consideration.
Extraordinary Assistance Fund
4.39
The committee notes that in other countries funds exist that can assist thalidomide survivors to modify their homes and vehicles. In the previous chapter, the committee set out how the fund works in Canada. Given evidence to this inquiry demonstrates that NDIS packages are inadequate to meet the costs of such modifications, the committee considers that a fund should be established to assist thalidomide survivors with major expenditure, such as modifying homes and vehicles.
4.40
The committee considers that such a fund should be administered by the centre that coordinates supports for Australian thalidomide survivors. The committee considers that this funding would be available to thalidomide survivors upon application, similar to the Canadian assistance fund.
4.41
The committee recommends that the Australian Government establish an Extraordinary Assistance Fund to aid thalidomide survivors to meet major expenses such as home and vehicle modifications.
Health support
4.42
The committee notes that thalidomide survivors have very particular health needs. However, the need for access to a broader range of health services than bulk-billed General Practitioner visits and hearing tests and rehabilitation is not unique to thalidomide survivors.
4.43
The Thalidomide Group Australia requested a health card that would allow access to a similar range of services as those permitted under a Department of Veterans' Affairs Gold Card. The committee notes that no such card exists outside of the defence context. However, the committee believes that consideration should be given to developing a health care card that can be provided to groups of people whose injuries can, in part or in whole, be attributed to the actions of the Australian Government.
4.44
The committee recommends that the Department of Social Services and the Department of Health consider developing a health care card that could provide access to a broader range of health services than are available under the Pensioner Concession Card that could be provided to people in circumstances where they require a higher level of care or in special circumstances.
Records of assessments
4.45
The committee notes that thalidomide survivors' bodies are deteriorating and their function is becoming more limited. On that basis, the committee considers that it is important for thalidomide survivors to be able to have access to records about their own health to assist them to demonstrate, if necessary, how their function has deteriorated over time.
4.46
The committee notes that Mr Peter Semmler QC had indicated that he retains copies of survivors' individual assessments from 2010 and Diageo has undertaken to investigate its records to find if it holds copies of survivors' assessments. The committee considers that having access to these records would assist thalidomide survivors and, with their consent, those people providing them with medical care.
4.47
The committee recommends that Diageo expedite the examination of its archives to determine if it retains copies of assessments of thalidomide survivors' disabilities and, if it finds relevant documents, offer to make copies of those documents available to the thalidomide survivors to whom they pertain at no cost.
Public interest immunity claim
4.48
The committee notes that Senator the Hon. Bridget McKenzie made a claim of public interest immunity over the contents of the Maddocks Lawyers' advice on the basis that it constitutes legal advice to government.
4.49
The committee does not consider that the Minister's claim satisfies the process the Senate has prescribed for public interest immunity claims. Specifically, the Minister's claim does not identify the harm to the public interest that could result from the disclosure of the document. As the advice would allow for a better understanding of the legal context in which the Australian Government is being asked to respond, the committee considers that it is in the public interest for the document to be released.
4.50
The committee recommends that the Australian Government publish the Maddocks Lawyers' advice.
Support from Grünenthal
4.51
The committee notes that Grünenthal is yet to provide any support to Australia's thalidomide survivors. The committee considers that Grünenthal as the manufacturer of the drug played a major role in the thalidomide tragedy in Australia and that Australia's thalidomide survivors deserve to have their injuries recognised by all parties concerned. The committee received some evidence that the Australian Government may be able to seek to recover money from Grünenthal to support Australia's thalidomide survivors. The committee considers that the Australian Government should investigate what possible options may be available to recover money from Grünenthal to help compensate Australia's thalidomide survivors.
4.52
The committee recommends that the Australian Government consider options to recover money from Grünenthal GmbH to support Australia's thalidomide survivors.
Chair