Many of us who survived missed out on opportunities in life because of the deformities. Some of these opportunities are having a life-long relationship with someone they love, having children, pursuing a career, and being able to earn good money, pursuing their dreams and following their passions…without the stares, the pointing, the whispering and, most of all, the pain and suffering throughout their lives. The government cannot just turn a blind eye to the injustice we have had to endure. We are not dead yet. We are very much alive and want to live the rest of our lives as best we can.
5.1
Thalidomide has had, and continues to have, an all-encompassing effect on the lives of survivors and their families. The committee recognised that survivors and their families have lived with the consequences of thalidomide throughout their lives.
Fifty years of fighting
5.2
Since thalidomide survivors were exposed to thalidomide in utero, survivors have had to struggle to overcome adversity. As children, some survivors were institutionalised, required multiple surgeries, and spent long periods of time seeking medical care or disability assistance. The childhood opportunities of survivors were often determined by the limitations of their physical impairments. Survivors faced difficulty in accessing education, forming social connections and finding employment. Bullying was a common occurrence, the effects of which have stayed with survivors into adulthood. Some survivors have been further abused and marginalised later in life.
5.3
Thalidomide survivors have complex health conditions, affecting them both physically and psychologically. The committee is aware that some survivors died prematurely as a result of thalidomide complications. The committee heard that survivors often need assistance in performing routine tasks, such as getting dressed or toileting. Survivors have been discriminated against in accessing work and many have been forced to retire due to their deteriorating health. As survivors age, their thalidomide injuries are worsening as they are experiencing the effects of wear and tear and premature ageing.
5.4
Survivors have fought hard to live life on their own terms to reach their potential, particularly in education, work and family life. For this inquiry, it has been necessary for the committee to consider the impacts thalidomide has had on survivors and their families, and the disadvantages survivors continue to face, to adequately understand the support requirements of Australia's thalidomide survivors. This led to the committee receiving and hearing considerable distressing evidence. Yet it is clear to this committee that survivors simply want to live an independent and dignified life, to greatest extent possible. Survivors have battled to maintain their independence, to gain acceptance, inclusion and now support.
5.5
Survivors have been inadequately supported in living life independently, and maintaining their quality of life in the face of significant health issues and physical impairments. As thalidomide survivors age, their support requirements will increase, and the committee is aware survivors' health is declining at an accelerated rate. The committee is concerned that evidence from survivors indicates that their current and future support arrangements are inadequately provided for, and that survivors' wellbeing is adversely affected.
Compensation and the role of the Australian Government
5.6
The committee acknowledges that Australia's recognised thalidomide survivors have received some compensation and financial support. However, payments that they have received to date were calculated based on legal factors, not an evaluation of the true cost of what thalidomide survivors might need to live independently with dignity with their significant disabilities.
5.7
It is clear to the committee that the payments that thalidomide survivors have received to date are not commensurate with the cost of the supports that they need now. It is also clear that as the Diageo payments do not increase with inflation, the financial support that they are currently receiving will become increasingly inadequate to meet their needs.
5.8
The committee recognises that, comparative to other countries, Australia has done relatively little to support its thalidomide survivors. In Chapter 4 the committee noted that governments in other countries have provided generous assistance to thalidomide survivors in addition to support that survivors may have been receiving from the distributor. These forms of support have been both financial and non-financial.
5.9
The committee considers that the Australian Government should closely consider what it could do to ensure that Australia's thalidomide survivors receive both financial and practical supports commensurate to their needs. The committee's examination of models of support implemented in other countries indicates a wide range of possible approaches that could be taken to support Australian thalidomide survivors.
5.10
The committee understands that the Australian Government commissioned a report from Maddocks Lawyers to obtain a comprehensive picture of the Commonwealth's role and the possible options that are open to the Commonwealth. The committee understands that this report may contain important information regarding the role of the Australian Government in providing improved support and compensation to Australia's thalidomide survivors. The committee strongly encourages the Australian Government to make the report available to the committee.
5.11
Australia has two differently compensated groups of recognised thalidomide survivors and potentially a group of unrecognised thalidomide survivors. The committee has received substantial evidence as to the need to revisit the issue of further compensation. To ensure that any Australian Government framework adequately meets the needs of all Australian thalidomide survivors, the committee considers that more work and research needs to be undertaken to determine how that scheme should work. The committee intends to focus on the design of such a scheme in its final report.
5.12
Based on the evidence the committee has received to date in this inquiry, there are some steps that the committee considers should be taken immediately.
Coordination and development of further knowledge
5.13
Throughout this inquiry, the committee has observed that there appears to be a paucity of knowledge in Australia about thalidomide and its effects on the lives of survivors. The Department of Health, the Department of Social Services and the National Disability Insurance Agency all admitted to having little knowledge about thalidomide survivors and this lack of knowledge and understanding is reflected in the challenges that thalidomide survivors have experienced in obtaining access to government services and payments.
5.14
As thalidomide survivors' injuries are caused by a drug and as some thalidomide survivors are likely to require access to aged care services in the near future, the committee considers that the Department of Health should take the lead, in consultation with thalidomide survivors, to establish an inter-departmental working group to develop better knowledge within government departments and to create more transparent pathways and contacts for thalidomide survivors.
5.15
The committee recommends that the Department of Health, in consultation with Australia's thalidomide survivors, establish an inter-departmental working group with a view to:
facilitating easier access to existing Australian Government payments and services; and
conducting or commissioning additional research about the health and other needs of thalidomide survivors in Australia.
5.16
The committee considers that one area that this working group could prioritise is the development of a central contact point within the Department of Health, the Department of Human Services and the National Disability Insurance Agency. Staff performing these roles should have an understanding of the nature of thalidomide injuries and survivors' experiences and needs and be able to act as a contact and a 'champion' to help thalidomide survivors understand what they may be eligible for and how to apply for it. As thalidomide survivors represent only a small number of people and as the committee understands that something similar has previously existed within the Department of Human Services, the committee considers that this could provide a useful and practical first step.
5.17
The committee recommends that a contact point for thalidomide survivors should be established in the Department of Health, the Department of Human Services and the National Disability Insurance Agency.
5.18
Another area that needs to be prioritised is the development of a network of health specialists and practitioners with a specialised knowledge of thalidomide injuries. The committee received evidence that understanding of thalidomide injuries among health practitioners is generally poor and that many practitioners have not encountered thalidomide survivors in their practices. The specialised nature of thalidomide injuries poses particular challenges for even the most routine medical consultation. This underscores the need for a network of health practitioners and specialists to be identified who can treat thalidomide survivors appropriately. Within Australia, it is not clear who the leading physicians or specialists might be or that any substantive research is being done to try and find out. Evidence to the committee to date, is that thalidomide survivors themselves have played a large part in assisting health practitioners to understand their injuries and the implications of these for medical treatment.
5.19
The committee received evidence that relevant health professionals have been located by the Thalidomide Trust in the United Kingdom and by Ishizue in Japan, but it is clear that the Australian Thalidomide Fixed Trust does not have the capacity to carry out this function. The committee considers that identification of relevant health professionals should not be outsourced to thalidomide survivors, but should be undertaken by a properly resourced body.
5.20
The committee recommends that the Department of Health work with the relevant professional colleges to identify Australian health practitioners who have, or are prepared to acquire, expertise in treating thalidomide injuries.
5.21
Throughout the course of this inquiry the committee experienced difficulty in identifying health practitioners who were able to assist it. However, the committee received evidence that there are groups internationally who are willing to assist Australia to build capacity in this area. The committee considers that the Department of Health and the relevant professional colleges should work together to develop a framework to provide funding assistance to enable health practitioners to learn from international experts.
5.22
The committee recommends that if adequate relevant expertise does not exist in Australia, the Department of Health work with professional colleges to ensure appropriate funding assistance is available to enable specialists to learn from international experts who already treat thalidomide survivors.
5.23
The committee considers that the working group should commission a study of the health of Australian thalidomide survivors to understand how survivor's health needs change over time. The committee is conscious that Australia's thalidomide survivors have already endured a lifetime of medical assessments and reassessments. The evidence the committee received indicates that thalidomide survivors' health outcomes are deteriorating. The committee has heard evidence that suggests records of previous assessments undertaken in 2010 are scant, but that some of this information may still exist. The committee considers that it would be useful to establish a baseline against which to assess and understand thalidomide survivors' health needs in the future, particularly given the evidence received during this inquiry regarding the effects of early onset ageing on thalidomide survivors.
5.24
The committee recommends that the Department of Health conduct a survey of the health of Australia's thalidomide survivors to serve as a baseline assessment for future reference.
Making existing supports work more effectively
5.25
Thalidomide survivors told the committee that they have experienced difficulty accessing a number of payments and services. The committee considers that these difficulties should be closely examined and addressed as a matter of priority.
National Disability Insurance Scheme
5.26
The National Disability Insurance Scheme (NDIS) has been a source of substantial frustration for thalidomide survivors and their families. In Chapter 3 the committee noted that the NDIS has developed a complex disability pathway that may be of some assistance to thalidomide survivors. However, the evidence the committee has received indicates that the NDIS still has some way to go if it is to provide appropriate support to thalidomide survivors. The committee hopes that the establishment of a central point of contact at the NDIS that can support thalidomide survivors to navigate the NDIS may assist to some degree.
5.27
The National Disability Insurance Agency (NDIA) suggested to the committee that it could create a factsheet to educate planners and assessors about thalidomide and thalidomide injuries. The committee considers that while this is a small step it is an important step in the right direction.
5.28
The committee recommends that the National Disability Insurance Agency create a guide to assessing and planning appropriate supports for thalidomide survivors.
5.29
As noted in Chapter 3, the committee is concerned about thalidomide survivors' supports being reduced by the NDIA. The committee understands that the way the National Disability Insurance Scheme Act 2013 is drafted requires the NDIA to take compensation into account. In the committee's final report, it will investigate how the Act may need to be amended.
Medical professions
5.30
The committee received some very concerning evidence about the conduct of health practitioners and the ways they have dismissed thalidomide survivors. The committee recognises that given the relatively small number of thalidomide survivors, most practitioners will not have treated a thalidomide survivor. Practitioners may have little understanding of the range of thalidomide injuries and what this might mean for the treatment of individual survivors. The committee considers that as the bodies responsible for continuing medical education, the relevant colleges should take steps to raise awareness of thalidomide and thalidomide injuries among their members and incorporate a module on thalidomide and thalidomide injuries into their syllabuses.
5.31
The committee recommends that the Royal Australian College of General Practitioners, the Royal Australasian College of Physicians and the Australian College of Rural and Remote Medicine take steps to raise awareness of thalidomide and thalidomide injuries, including by incorporating a module on thalidomide injuries in their next round of Continuing Professional Development.
Future compensation and the final report
5.32
This interim report has focused on the effect of thalidomide on survivors and their families. It is clear that thalidomide has affected every part of their lives and continues to affect them and their families.
5.33
The committee recognises that thalidomide survivors have waited a long time to be heard. The committee recognises that in tabling this interim report it is asking thalidomide survivors to wait longer still to hear the committee's conclusions on the question of future compensation.
5.34
The committee has received compelling and insightful evidence to date, but the evidence it has received has also revealed that there are questions that require further examination. This includes closer consideration of a number of matters that were brought to the committee's attention late in the inquiry.
5.35
The committee intends to continue its examination of the response of states and the Commonwealth to thalidomide injuries, including the range of supports Australian governments have provided thalidomide survivors to date. It will also consider any intergovernmental cooperation to address the needs of thalidomide survivors.
5.36
As noted in this report, other governments around the world have provided financial and non-financial supports to their thalidomide survivors. In this report the committee has canvassed the options that may be available to inform the provision of additional support for Australian thalidomide survivors. In its final report, the committee will look more closely at this.
5.37
At its Sydney hearing the committee attempted to examine the assessment and decision making process that underpinned the financial payments that have been made to date. While the committee has noted some evidence about these assessments and payments in this report, the committee still has an incomplete understanding of the process by which the current support payments were determined. The committee intends to conclude its consideration of these matters in its final report.
5.38
The committee recommends that the Senate extend the date for the presentation of the final report for this inquiry to 22 March 2019.
Chair