In terms of Government expenditure it would involve a relatively trifling cost to take over the care of these victims and give them every assistance that modern medical science can devise… Australia has already been criticized overseas for being slow in helping thalidomide victims. To be fair, both Federal and State Governments have indicated their willingness to help. But we should give nothing less than the fullest possible assistance - not just in answer to criticism but in the name of common humanity.
3.1
In its interim report, the committee concluded that the current supports that are available to Australia's thalidomide survivors are not sufficient and do not serve survivors well. The evidence received by the committee indicated that survivors experience difficulty in receiving appropriate levels of support from the National Disability Insurance Scheme (NDIS), forms of income support and accessing adequate mobility supports.
3.2
As noted in earlier chapters and in the interim report, the needs of thalidomide survivors are increasing. The committee received evidence that the deterioration of survivors' health is being caused by the worsening and newly emergent complications of survivors' thalidomide injuries, and also from the 'wear and tear' caused by the way survivors have been forced to contort their bodies to perform daily tasks.
3.3
In its interim report, the committee noted its intention to conclude its consideration of a number of issues relating to the way supports can be developed to assist thalidomide survivors. This chapter builds on the committee's considerations in its interim report to ensure that the framework that is established to support survivors learns from the survivors' experiences.
3.4
The chapter first considers issues with the supports available through the NDIS and some of the other supports that have been made available to survivors before considering how the requests made by the Thalidomide Group Australia together with better coordination of services may be able to assist all Australian thalidomide survivors.
National Disability Insurance Scheme
3.5
The committee's interim report considered concerns that the NDIS is not adequately addressing the needs of thalidomide survivors. The committee also noted concerns regarding the adequacy of support packages available under the NDIS to meet the specific needs of individual thalidomide survivors and the extent to which earlier compensation payments have reduced the support available to thalidomide survivors under the NDIS.
Barriers to access
3.6
The committee noted a number of barriers encountered by thalidomide survivors seeking to access support through the NDIS. Principal among these is the complexity of the application and assessment process coupled with a lack of understanding of thalidomide injuries.
3.7
The NDIS is designed to provide individualised supports to people with disability based on their needs. However, the committee has heard evidence from individual thalidomide survivors that demonstrates both a lack of understanding of their needs and an inability to deliver necessary supports within an appropriate timeframe.
3.8
The National Disability Insurance Agency (NDIA) told the committee that if an applicant for the NDIS has a diagnosis that is well recognised, it can be easier to understand the effect of that disability and identify the services and supports required.
3.9
However, the committee's interim report noted that Australian thalidomide survivors have a wide array of injuries. Some Australian thalidomide survivors have serious physical malformations and disabilities, including missing or malformed limbs. Other thalidomide survivors are deaf or have significant hearing loss, vision impairment, issues with continence and other internal injuries, in addition to significant nerve pain. The committee also noted the evolving nature of thalidomide injuries and the propensity for a thalidomide survivor's needs to change dramatically in a short period of time.
3.10
Many thalidomide survivors told the committee that their interactions with the NDIA and the NDIS have been a source of considerable frustration. The committee recommended that the NDIA take steps to better assist thalidomide survivors in their interactions with the NDIS, including the establishment of a central point of contact and the development of a guide to assessing and planning appropriate supports for thalidomide survivors.
Adequacy of packages
3.11
In its interim report, the committee also noted evidence that the amount of money that was being provided in NDIS participants' packages was insufficient to purchase the range of supports necessary to meet the needs of thalidomide survivors.
3.12
The committee received confidential evidence of a thalidomide survivor's experience of seeking assistance to modify their home to accommodate their changing needs. They were advised by their NDIS service coordinator there were insufficient funds in the package to obtain quotes for the home modifications, let alone complete the modifications themselves.
3.13
The committee notes that this is consistent with the findings of the Joint Standing Committee on the National Disability Insurance Scheme about the NDIS scheme more broadly.
NDIS and compensation payments
3.14
In its interim report, the committee noted it was concerned by evidence indicating the supports thalidomide survivors may receive under the NDIS could be limited by compensation provisions of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act).
3.15
Professor Richard Madden, Centre for Disability Research and Policy, University of Sydney, submitted to the inquiry that NDIS entitlement is 'not straightforward, or not available at all' for people whose disabilities arise from injuries that allow for compensation to be obtained outside of the NDIS.
3.16
Ms Vicki Rundle, Deputy Chief Executive Officer (CEO) of the NDIA, confirmed that the NDIS Act requires the NDIA to take compensation payments into account when determining the level of support a participant is eligible for:
The NDIS Act requires that we consider all compensation to participants in determining what level of support the NDIS will provide, and it has two components: a past component, in terms of recovery—that's if a person receives compensation …and then we are required to take into account the support that they've received through the compensation system in determining what would be provided by the NDIS.
Compensation payments under the NDIS Act
3.17
Chapter 5 of the NDIS Act contains provisions for the CEO of the NDIA to require an NDIS participant, or a prospective participant, to take action to seek compensation for a personal injury if the CEO considers that this is reasonable. Sections 106 and 107 of the NDIS Act provide power to the NDIA CEO to recover costs of NDIS supports provided to a participant if that participant is awarded compensation for their injuries.
3.18
Section 116 of the NDIS enables the CEO of the NDIA to make discretionary decisions to disregard certain payments for the purposes of Chapter 5 of the NDIS Act. Section 116 has been applied by the NDIA on 12 occasions to 'treat a participant's payments as not having been fixed, in whole or part'.
3.19
The NDIA told the committee that the purpose of the compensation provisions of the NDIA Act is to '...avoid duplicate funding where compensation includes damages for past and future supports of a kind provided by the [NDIS]'.
Thalidomide survivors' settlements and ex-gratia payments
3.20
Thalidomide survivors have previously received settlement or ex-gratia payments associated with their thalidomide injuries. The NDIA has requested details of thalidomide survivors past payments as part of their NDIS eligibility assessment.
3.21
The NDIA told the committee that Chapter 5 of the NDIS Act is not applicable to settlements and ex-gratia payments that thalidomide survivors' received prior to entering the NDIS. However, the NDIA considers the payments received by thalidomide survivors to '…determine if a Compensation Reduction Amount (CRA) is applicable to ensure there is no duplication in funding or supports'.
3.22
The NDIA is required to consider applying CRAs for thalidomide survivors who have identified as receiving a compensation amount under the provisions of the National Disability Insurance Scheme (Supports for Participants—Accounting for Compensation) Rules 2013 (Rules). Rule 3.10 empowers the CEO of the NDIA to make a decision to ignore a CRA which would ordinarily arise if it is appropriate to do so in special circumstances.
3.23
Applying a CRA to the previous payments made to thalidomide survivors appears to be inconsistent with the previous treatment of those payments. In the previous chapter, it was noted that the payments made by the Thalidomide Australia Fixed Trust were exempt from income tax and the social security income test. These exemptions were provided to ensure that the other supports that they receive were not reduced because thalidomide survivors received the additional financial support. It is somewhat inconsistent for some parts of the Australian Government to ensure that the benefits thalidomide survivors are able to access are not being reduced, but for the compensation payment to be taken into account to reduce the level of support they are able to access under the NDIS.
3.24
As the committee noted in its interim report, the payments received by thalidomide survivors to date have not been calculated on the basis of their level of disability and are not commensurate with the cost of supports that thalidomide survivors need. The committee noted that as such payments are not indexed for inflation, they will become increasingly inadequate to meet the evolving needs of thalidomide survivors as they age.
3.25
The NDIA was unable to provide details about the number of thalidomide survivors who had been asked for details about their settlement or ex-gratia payments, or have been deemed ineligible for the NDIS on the basis of receipt of those payments. It is therefore not clear if thalidomide survivors have had the amount of support that they may be eligible for under the NDIS reduced.
3.26
Professor Madden noted that the compensation provisions of the NDIS Act were introduced so that the measures that supported state and territory based injury compensation schemes, including for road and workplace accidents, would continue. Thalidomide survivors are not covered by those schemes. Professor Madden considered it was important that '…all necessary actions be taken to ensure that the compensation provisions of the NDIS Act do not block or limit [thalidomide survivors'] access to the full range of NDIS supports'.
Committee view
3.27
The committee believes that the NDIS must be accessible to those that would meet the eligibility criteria and should be able to effectively deliver supports to all NDIS participants, including those with specialised and complex needs, such as thalidomide survivors. Evidence provided to the committee makes clear that the NDIS has not always provided thalidomide survivors with support to appropriately meet their specialised requirements. The committee understands that some of the issues experienced by thalidomide survivors in accessing NDIS supports are consistent with the experiences of other NDIS participants.
3.28
The committee considers that the NDIA should develop a formal understanding of the specialised support requirements of thalidomide survivors. The committee considers that thalidomide survivors' NDIS access requests and NDIS plans should be assessed by NDIA staff with specialist knowledge of thalidomide injuries.
3.29
The committee recognises that supports provided under the NDIS are not intended to duplicate other funding or supports. However, the committee is concerned that provisions of NDIS Act and the Rules could result in thalidomide survivors receiving less NDIS support than they otherwise would if they had not received past settlement and ex-gratia payments.
Thalidomide Group Australia's requests
3.30
As noted in Chapter 1 and in the interim report, the Thalidomide Group Australia has sought the committee's support for six requests from the Australian Government. The six requests that the Thalidomide Group Australia has made are:
a one-time upfront payment of up to $500 000 (scaled) to each thalidomide survivor;
an annual payment of $2 190 260 to the Thalidomide Australia Fixed Trust which would be tax exempt and exempt from the social security income tests when distributed to beneficiaries;
a Gold Card similar to the Department of Veterans' Affairs health card;
an 'Extraordinary Assistance Fund' of $500 000 to allow survivors to adapt their homes, environment and vehicles;
a plaque in recognition of Australia's thalidomide survivors and their parents to be mounted in a place of significance.
3.31
Each of these requests has been made by Thalidomide Group Australia because they believe it is what they need in order to live the rest of their lives with adequate support.
Recognition
3.32
In its interim report, the committee noted that thalidomide survivors want a form of recognition from the Australian Government. Survivors want the Australian Government to recognise the role it played in their lives and want the government to apologise for the hurt and hardship that thalidomide has caused survivors and their families.
3.33
The Thalidomide Group Australia advised that one form of recognition could be to mount a plaque in a place of significance to honour thalidomide survivors and their families. As one survivor told the committee:
I acknowledge the pain and suffering endured by our parents, grandparents and siblings throughout the previously uncharted waters of our thalidomide journey. It is my hope that a lasting memorial will be erected in their honour.
3.34
In November 2018, the Department of Health told the committee that the Minister for Health, the Hon Greg Hunt MP, had met with the Thalidomide Group Australia and 'indicated an interest in responding to one of those requests around a memorial'. Dr Studdert told the committee that the Department of Health had recommended to government that the memorial be established and that the department had contacted the Thalidomide Group Australia to discuss the establishment of a memorial. Dr Studdert described the nature of the potential memorial as follows:
…consistent with the request, it would be a publicly accessible place where there was some recording and testimony as to what had occurred. As I understood the request, and from our meeting, that the survivors, like all of us, were keen to ensure that this was never forgotten and that we were never in a situation where something like this happened again.
3.35
The Department of Health advised the committee that this was the only one of the Thalidomide Group Australia's requests currently being progressed by the Department of Health.
3.36
On 11 March 2019, in response to a program on the television program Australian Story, the Minister for Health announced that he had approved the development of a memorial garden at the National Arboretum in Canberra to recognise thalidomide survivors and their families.
3.37
The establishment of a memorial for thalidomide survivors in Australia is consistent with memorials established in other countries. For example, in 2016, a memorial was established in Cardiff, Wales for all persons affected by the thalidomide tragedy. On the memorial in Cardiff is a poem entitled 'To Remember is To Care'.
3.38
However, thalidomide survivors deserve and expect something more substantial from the Australian Government. In the United Kingdom, a memorial was not provided in isolation. As noted in the interim report, in 2010 the Government of the United Kingdom apologised to its thalidomide survivors and substantial financial support had already been provided.
3.39
In its interim report the committee noted that thalidomide survivors expressed a very strong desire to see the Australian Government apologise for its role in the thalidomide tragedy. Thalidomide survivors consider that they are owed an apology for the absence of support and the government's failure to acknowledge its involvement. Thalidomide survivors also want an apology for their mothers who often lived with terrible guilt about taking thalidomide.
3.40
The Department of Health advised the committee that it has not provided advice around an apology because the Minister for Health prefers to decide in what circumstances an apology is appropriate.
Lump sum payment
3.41
While thalidomide survivors may welcome a memorial and an apology, those requests will not provide the same tangible and direct support for Australia's thalidomide survivors as direct financial assistance.
3.42
The Thalidomide Group Australia has requested that a one-time upfront payment be made to each thalidomide survivor depending upon their level of disability. The Thalidomide Group Australia clarified that the current payments its members receive are arranged in five categories according to the severity of their injuries. It suggested that the payments could be structured so that payments could vary between $100 000 and $500 000 depending on the severity of their injury.
3.43
The Thalidomide Group Australia explained in its submission that the lump sum payment could be considered as partial compensation for the pain and suffering that survivors have endured:
This payment would be considered partial compensation for the 50+ years of pain and suffering each survivor has been subjected to, partially due to the negligence of the Australian Federal Government for allowing the sale, and then ongoing circulation of Thalidomide (after notification had been given of the atrocities this drug was causing).
3.44
In its interim report, the committee noted that many governments have provided one-off lump sums to thalidomide survivors as a form of compensation. Countries that have paid thalidomide survivors a lump sum include Ireland, Germany, Spain, Canada and Sweden. Belgium has also recently announced that it will provide a lump sum to thalidomide survivors and their parents.
3.45
In each case, the rationale for providing the payment has been slightly different. In its recent announcement the Belgian Government was clear that the sum was to compensate thalidomide survivors and their parents. Under the Belgian scheme, a single lump sum of €125 000 will be provided to thalidomide survivors or €30 000 will be paid to each parent who is still alive if their child died of their thalidomide injuries.
3.46
In Germany, thalidomide survivors are provided with a lump sum that is described as a 'capital payment' that will be provided in addition to the newly recognised survivor's first pension payment. In Germany and in the other countries where the Contergan Foundation provides support, newly recognised thalidomide survivors are provided with a one-off payment of between €1278 and €12 782 depending on the survivor's level of assessed disability when they first join the scheme.
3.47
In Canada, a lump sum is paid to newly recognised survivors when they are confirmed in the program. Unlike the German model, Canadian thalidomide survivors receive $125 000 CAD regardless of their level of assessed disability. In January 2019 the Minister for Health announced that a new program, to be known as the Canadian Thalidomide Survivors Support Program, will increase the lump sum payment to $250 000 CAD to newly recognised thalidomide survivors and will provide an additional $125 000 CAD to survivors who have already been recognised. Providing additional funds to recognised survivors is intended to ensure that there is no difference between the lump sums thalidomide survivors receive based on when they were recognised.
3.48
The Canadian Government has stated that it considers that the lump sum payment will be used to pay for 'urgent health care needs'.
3.49
In the United Kingdom, thalidomide survivors are provided with a lump sum each year that can be used to support their health needs as they see fit. As noted in the interim report, the health grant in the United Kingdom can be applied to a wide range of supports—from social activities to medical treatments costs—and it allows thalidomide survivors the flexibility to invest in the supports that they need.
3.50
Miss Michaelina Argy, the Deputy Chair of the National Advisory Council to the Thalidomide Trust in the United Kingdom told the committee that Australian thalidomide survivors are likely to require a substantial lump sum payment to help them invest in adaptations that they have otherwise been unable to make:
What I can advise from the UK situation is that Australian thalidomiders will need a substantial lump sum to enable them to pay for major adaptations and changes they need to make now, a catch-up for a previous inability to invest properly in their needs.
3.51
The Thalidomide Group Australia expressed the view that its members would prefer the lump sum payment to be scaled to take account of the different levels of disability within its membership.
3.52
If a lump sum is to be paid by the Australian Government, one of the questions that needs to be resolved is how a lump sum payment could be made to thalidomide survivors.
3.53
The Department of Finance advised the committee that ex gratia payments, which have previously been provided to groups of people, are no longer available. Instead, the Department of Finance advised that it was possible to make 'act of grace' payments under section 65 of the Public Governance, Performance and Accountability Act 2013 (Cth) (PGPA Act).
3.54
Under section 65 of the PGPA Act, the Finance Minister is empowered to make act of grace payments to a person in special circumstances if they consider that it is appropriate to do so. The Department of Finance noted that neither 'special circumstances' nor 'appropriate' are defined in the PGPA Act. However, the Department of Finance noted that act of grace payments may be able to be made to a non-natural person, such as a trust.
3.55
The Department of Health currently administers a number of special accounts, including one special account which has been set up to provide one-off payments and to provide counselling and medical care, in certain circumstances, to people who were treated with human pituitary-derived hormones. A special account may be able to be established to provide financial support to Australia's thalidomide survivors or to pay for certain other supports that may be required.
3.56
Another possible option may be to provide for a payment in legislation. The Department of Finance advised the committee that 'payments to groups of people are usually paid pursuant to legislation, or through a compensation scheme'. The Social Security Act 1991 currently contains a range of payments, including one-off payments to aged and older Australians, carers, for energy assistance payments and for Australian Victims of Overseas Terrorism. Amendments to the Social Security Act 1991 may allow for either a one-off payment or for ongoing payments to be made to thalidomide survivors.
Ongoing payments
3.57
The Thalidomide Group Australia has requested that, in addition to a lump sum payment, the Australian Government provide an additional $2 190 260 into the Thalidomide Australia Fixed Trust to be shared among the currently recognised thalidomide survivors as annual disbursements. The committee notes that this would supplement the amount that is currently provided by Diageo through the Thalidomide Australia Fixed Trust.
3.58
In its interim report the committee noted that either annual or monthly pensions are provided to thalidomide survivors in a number of other countries including Germany, Canada, Ireland, the United Kingdom, Japan, Italy and Austria.
3.59
In Germany, thalidomide survivors receive the capital lump sum when they are recognised, a monthly pension, an annual lump sum and an annual 'special payment' which is provided on a scale according to the survivor's level of disability provided the survivor's level of disability is above a certain threshold.
3.60
In Canada, thalidomide survivors are provided with annual payments in accordance with their assessed level of disability. If a survivor feels that their condition has deteriorated and they are in need of more support, the survivor is able to ask to be reassessed and have their level of financial support increased.
3.61
Australian thalidomide survivors have advised the committee that ongoing payments provide financial certainty to allow them to plan and live the rest of their lives with dignity.
3.62
In the United Kingdom the health grant provides thalidomide survivors with a continuous stream of funding to support their health needs. Ms Elizabeth Newbronner, a researcher at the University of York, told the committee that money provided thalidomide survivors with the ability to choose how they maintain their independence and function:
Having money creates…the comfort of being able to afford things in the here and now; the reassurances of having 'insurance' to cover unexpected events; and the confidence that, if necessary, the resources are there to meet changing needs.
Gold Card
3.63
The Thalidomide Group Australia has requested that the Australian Government provide thalidomide survivors with a health care card or Gold Card to assist them with meeting the cost of their health needs.
3.64
As noted in the interim report, while some procedures are provided in public hospitals or are bulk-billed, many health services that people with disabilities require are not subsidised. For thalidomide survivors, this can result in significant out of pocket expenses. A Gold Card would allow thalidomide survivors to access the medical, dental, chiropractic, exercise physiology and diagnostic imaging services they need at a subsidised or no cost.
3.65
The Department of Veterans' Affairs provides health care cards to eligible veterans, their spouses and dependants. Different health care cards entitle the holder of the card to different benefits. The Gold Card provides access to 'all clinically required health care treatment' at the Department of Veterans' Affairs expense. Veterans who qualify for the Gold Card also receive access to the Repatriation Pharmaceutical Benefits Scheme which only requires a $6.50 co-payment.
3.66
By comparison, thalidomide survivors who receive the Disability Support Pension are entitled to receive the concessional rate on pharmaceutical drugs and out-of-hospital medical expenses, bulk-billed General Practitioner appointments and free hearing assessments and hearing rehabilitation with a Pensioner Concession Card.
3.67
Access to a form of health care card, like the Gold Card, would clearly make a substantial difference to the lives of thalidomide survivors, by providing access to clinically required medical and allied health services on a no cost or subsidised cost basis.
3.68
Currently, the Gold Card has not been extended beyond the defence context. The Department of Health advised the committee that it has provided advice to the Minister for Health about the possibility of providing a form of health care card to thalidomide survivors, but that it was not a matter that was under active consideration by the Department.
Extraordinary Assistance Fund
3.69
In its interim report, the committee noted that thalidomide survivors require very specific health supports and made recommendations in that report to ensure that health specialists could be identified to assist in the diagnosis and provision of such supports.
3.70
The Thalidomide Group Australia explained that an Extraordinary Assistance Fund of $500 000 would allow thalidomide survivors to adapt their homes, environment and vehicles to accommodate their disabilities.
3.71
Canada operates an Extraordinary Medical Assistance Fund as part of the package of supports that it provides to its thalidomide survivors. Under the Canadian scheme, the survivors lodge applications to request funding from the Extraordinary Medical Assistance Fund. Funding can be provided to assist with specialised surgeries, home or vehicle adaptations. Funding is then provided on a first come, first served basis. If there is greater need than there are funds, then health needs are prioritised over other claims.
3.72
Currently, Canada's Extraordinary Medical Assistance Fund is provided with $500 000 CAD per year. However, the Canadian Minister for Health announced in January that as part of the new support program for thalidomide survivors, this amount will be increased to $1 million per year.
3.73
The existence of an Extraordinary Assistance Fund recognises that thalidomide survivors have needs that are extraordinary and significantly more complex than most people. It also recognises that the health system is not necessarily able to provide all of the services that thalidomide survivors require. Having access to these funds allows survivors to have the flexibility to access the care that they need when they need it without worrying about cost.
Committee view
3.74
The committee welcomes the Minister's announcement that there will be a memorial garden to recognise thalidomide survivors and their families at the National Arboretum, but considers that this is only a first step toward recognising the plight of Australia's thalidomide survivors and their families.
3.75
The committee notes that lump sum payments have been widely used by other governments around the world to either compensate thalidomide survivors and their parents for the government's role in the regulation of thalidomide or as a support payment to allow thalidomide survivors to invest in their health, home and car modifications or other supports they may need. Regardless of whether the payment is considered as compensation or a support payment, the committee notes that a lump sum would provide thalidomide survivors with the flexibility and independence to determine their own needs.
3.76
The committee notes that other countries around the world pay thalidomide survivors some form of ongoing pension, often in addition to a lump sum payment. The committee notes that most ongoing payments are provided on a scale according to the level of the survivor's injuries and provide a level of financial security for thalidomide survivors. The committee notes that in some systems there is a mechanism for thalidomide survivors to be reassessed if they consider that their condition has worsened. The committee considers that some thought should be given to how thalidomide survivors can be provided with increased support as they age.
3.77
The committee notes that there are a number of different mechanisms that may be able to be explored to ensure that appropriate payments can be made to thalidomide survivors.
3.78
The committee considers that a health care card that entitled thalidomide survivors to free health or subsidised care for a broader range of services than is currently available with a Pensioner Concession Card would be extremely beneficial and would alleviate a significant financial burden.
3.79
The committee has already noted that the NDIS does not work for thalidomide survivors. Providing an Extraordinary Assistance Fund would alleviate a significant financial burden for thalidomide survivors and would be consistent with international approaches to supporting thalidomide survivors to obtain home modifications and vehicle adaptations that are unlikely to be accommodated under a thalidomide survivor's NDIS package.
Navigating supports
3.80
For thalidomide survivors to receive the greatest benefit from the services that currently exist and the supports that may be established, there will likely need to be some form of coordination. In its interim report, the committee noted that thalidomide survivors have experienced significant difficulty in applying for and obtaining the benefit of supports that have been made available to assist people with disabilities, including the Disability Support Pension, obtaining disabled parking permits and obtaining adequate support under the NDIS. The committee also noted that, because of the particular and unusual nature of their injuries, thalidomide survivors' interactions with health professionals and public servants are frequently difficult and unsatisfactory.
3.81
These failures highlight a systemic lack of understanding about thalidomide injuries, meaning that thalidomide survivors have been left to educate others about the effects of thalidomide and how it affects their life.
3.82
Thalidomide survivors in other countries have the support of an organisation that can provide advice and coordinate access to services. In Chapter 4 of its interim report the committee recognised that in Japan, the United Kingdom, Canada and Germany there are organisations that exist to assist thalidomide survivors and to coordinate payments and services for thalidomide survivors. For example, as noted in the interim report, Ishizue, the Japanese support centre, manages payments, provides consultation for medical practitioners about thalidomide injuries, conducts research, consults on housing modifications and facilitates a mutual assistance forum to exchange information between survivors.
3.83
In each of these countries the organisations that coordinate services for thalidomide survivors are funded by government.
Assistance with service agencies
3.84
In its interim report the committee recommended that a contact point in the Department of Human Services (DHS) be re-established and that contact points be established within the Department of Health and the NDIA to help thalidomide survivors to navigate the supports that are available within those agencies.
3.85
This recommendation was made after Mr Lance Fletcher, Founder and President of Thalidomide Australia Incorporated, told the committee that DHS had previously established a direct contact point that survivors could call as a 'one-stop shop for information regarding DHS inquiries and issues'.
3.86
Mr Fletcher informed the committee that the service worked well for survivors while it was established.
3.87
DHS confirmed to the committee that the direct contact point for thalidomide survivors no longer exists. DHS told the committee it operated the service for approximately two years from April 2013, however indicated that the service was ended due to low utilisation.
3.88
DHS responded to the recommendation in the committee's interim report calling for re-establishment of the position by advising that it did not consider that there was a need for a contact point:
[W]hile the Department appreciates the special and specific needs of thalidomide survivors, the Department does not see the need for a separate contact point and does not consider that separate contact points for each cohort of customers is the most effective way to provide services.
3.89
Instead, DHS suggested that customers with complex circumstances could access support 'through a Departmental service officer or specialist'.
Inclusion of unrecognised survivors
3.90
As noted in the interim report, there may be a group of thalidomide survivors in Australia who have not yet been recognised. During this inquiry the committee has been approached by individuals who consider they may be thalidomide survivors and are seeking assistance to have their injuries recognised. The Thalidomide Australia Fixed Trust has confirmed that it only receives funds for its 45 beneficiaries and that additional negotiation would be required to add any additional beneficiaries. This means that, at present, there is no pathway for unrecognised thalidomide survivors to become recognised and access the same compensation and support as other survivors.
3.91
In Canada, Germany and the United Kingdom, the organisation that administers payments and coordinates supports for thalidomide survivors also manages the assessment of people who think they may be thalidomide survivors.
3.92
In the interim report, it was noted that the Royal Australian College of General Practitioners suggested that there should be a specialised assessment centre that unrecognised thalidomide survivors may be able to approach. However, no such centre currently exists in Australia. If there was a specialised assessment centre with expertise in thalidomide injuries, it would enable people who thought they may be thalidomide survivors to have their injuries assessed and enable thalidomide survivors who have been identified with the ability to be reassessed if they believe their injuries have changed such that they require additional supports.
3.93
The committee has received evidence that there are a number of ways that thalidomide survivors can be assessed. One option is for a medical examination. In terms of determining whether a person is a thalidomide survivor, the committee received evidence that there are different opinions about when thalidomide can affect a foetus and what malformations thalidomide can cause. One view is that thalidomide primarily acts during a time sensitive window during which phocomelia and the other major damage that is usually associated with thalidomide is done. A second view is that, if thalidomide is taken outside of that window, it causes mild damage to 'the gastrointestinal tract, the cardiovascular system, the kidneys, the liver and the genitals'. The committee heard that if the damage was only mild, it may not present until later in life. However, Professor Neil Vargesson noted that this more mild form of thalidomide damage is more difficult to assess as being caused by thalidomide exposure.
3.94
In terms of developing a consistent schema for determining the severity of thalidomide injuries, the committee noted in the previous chapter that the members of the team that conducted the assessments before the 2010 Diageo ex gratia payments commenced conducted their assessments in different ways.
3.95
The committee broadly understands that a holistic approach informed by the common law principles relating to the assessment of damages was used or at least reflects the payments that thalidomide survivors were ultimately awarded.
3.96
Another potential approach could be to recognise survivors based upon documentary evidence that their mother took a product containing thalidomide during pregnancy. In Canada, determining who is a survivor has been outsourced to the independent company that manage the thalidomide support program on behalf of Health Canada. Applicants to that program are required to meet one of three eligibility criteria:
verifiable information of the receipt of settlement from the drug company;
documentary proof of material use of a thalidomide product in the first trimester of pregnancy; or
have their name on a government list of thalidomide victims.
3.97
Health Canada noted that given the passage of time those criteria are hard to satisfy. It noted that of 193 applications, only 25 were approved and most of these applications met the second criteria, documentary proof of use of thalidomide.
3.98
A 2017 study by Canada's House of Commons Standing Committee on Health recommended that the Minister for Health review the eligibility criteria. Canada has announced that it is changing its approach to a 'fair and comprehensive approach to identifying thalidomide survivors that is based on international best practices'. However, as the new program has not opened yet, it is not clear what criteria the new program will use to determine eligibility.
Committee view
3.99
The committee considers that there needs to be a way of coordinating information, services and payments for thalidomide survivors. In its interim report, the committee made recommendations to improve the ability of thalidomide survivors to access information and services.
3.100
The committee notes that coordinating organisations have played a useful role supporting thalidomide survivors in other jurisdictions. This has included assistance to navigate the existing supports that thalidomide survivors may be able to access in addition to coordinating services that are specific to thalidomide survivors. For example, the Thalidomide Trust in the United Kingdom provides assistance to its thalidomide survivors with filling in forms to apply for forms of assistance they may be eligible for, in dealing with agencies and in explaining what thalidomide is and how it affects survivors. Evidence to the committee indicates that Australian thalidomide survivors would benefit from a similar form of assistance.
3.101
The committee also considers that regardless of the method used, there must be a mechanism for unrecognised thalidomide survivors to be identified and share in the supports that are available to thalidomide survivors. The committee considers that this needs to be done in a way that is fair and considerate to thalidomide survivors.