…having money matters, not only because of what it can buy but how it makes people feel. Having money provides a sense of security…creates options and choices, particularly in relation to how best to maintain independence of preserve function.
4.1
Despite the differences in injury or need, survivors' evidence to the committee identified a common aspiration: to live the rest of their lives with dignity and in comfort. The previous chapter demonstrated that thalidomide survivors will only be able to achieve that goal with a wide range of support and assistance. This chapter considers whether the compensation thalidomide survivors have received to date is sufficient to meet their needs now and in the future or whether additional financial support is required.
Requests from the Thalidomide Group Australia
4.2
The Thalidomide Group Australia has six requests for support it would like from the Australian Government.
4.3
The requests from the Thalidomide Group Australia were:
(a)
a one-time upfront payment of up to $500 000 for each thalidomide survivor to be scaled according to their degree of disability;
(b)
an annual payment of $2 190 260 to be exempt from income tax and social security income tests, to be distributed through the Thalidomide Australia Fixed Trust;
(c)
a 'Gold Card' similar to the Department of Veterans' Affairs health card that provides access to a wide range of health services at the Commonwealth's expense;
(d)
an 'Extraordinary Assistance Fund' of $500 000 to allow survivors to adapt their homes, living environment and vehicles to accommodate their disabilities;
(e)
a formal apology to Australian thalidomide survivors and their families; and
(f)
a plaque in recognition of Australian thalidomide survivors and their parents.
4.4
The requests are based on similar supports that have been provided to thalidomide survivors by governments in other countries. Whether these requests are reasonable and necessary in the Australian context needs to be considered in light of the compensation that thalidomide survivors have received to date.
Compensation
Global context
4.5
As noted in Chapter 1, dangers of thalidomide were scientifically demonstrated in the early 1960s. However, thalidomide survivors were not compensated for another decade.
4.6
In 1968, the drug's manufacturer, Chemie Grünenthal, faced a criminal trial in Germany. The trial was suspended in December 1970. Earlier that year, Chemie Grünenthal had offered a settlement of DM100million, more than the company's total valuation in 1970, to support the survivors of thalidomide. However, Chemie Grünenthal only provided financial support where it had directly distributed the drug. In places where the drug had been distributed by a licensee—including the United Kingdom, Canada and Australia—Chemie Grünenthal did not contribute funds to support thalidomide survivors.
4.7
Time has not changed Chemie Grünenthal's position. The company has continually resisted legal challenges for compensation both in Australia and overseas. Instead, the distributors of the drug have provided some compensation.
Compensation in Australia
4.8
Thalidomide survivors in Australia have not been uniformly compensated. Instead, thalidomide survivors who have been compensated by the Australian distributor of products that contained thalidomide, Distillers Company Limited (Distillers), and its successor, Diageo Australia, fall into two broad categories: survivors who were first recognised in the 1970s as having been affected by thalidomide and a group who were identified in the 2010s.
Compensation for thalidomide survivors recognised in the 1970s
4.9
As noted in Chapter 1, in the early 1970s the Australian distributor of products containing thalidomide, Distillers, reached a settlement with the parents of children who were recognised as being affected by thalidomide. Part of the compensation package required the parents to waive their rights to recover additional compensation from Distillers at a later time, including by taking legal action.
4.10
As part of the settlement, upon reaching 25 years of age, survivors received a 'modest' payment. Until thalidomide survivors reached the age of 25, the payments from Distillers were held in trust, where they accrued interest. These payments were provided on a sliding payment scale according to the survivor's level of disability.
4.11
Mr Lance Fletcher, Founder and President of Thalidomide Australia Incorporated, advised the committee that the parents of thalidomide survivors were provided with a small amount of compensation to cover out-of-pocket costs that were directly related to the survivor's care:
In the 1970 process a lot of our parents had out-of-pocket expenses which they claimed and which Distillers paid. I think my mum and dad got about $9,000 at that time. That was to cover the cost of me going to Melbourne for all my ear operations…There was a small payment to a lot of our parents, but they had to justify those costs to get that small payment.
4.12
The committee received evidence that survivors' parents were provided with a choice about whether they would like to receive the interest payments that accrued from the trust. Survivors' parents had to decide whether they wanted to reinvest that interest in the trust or access it to meet their costs. If a survivor's parents could afford to reinvest the money, the survivor would receive a larger sum when they reached the age of 25. However, if the survivor's parents needed to receive the interest payments to help meet their costs, the payment that the survivor received at 25 years of age would be substantially smaller. Mrs Lesley Fletcher, Founder and Former Secretary of Thalidomide Australia Incorporated told the committee that the payment her husband received had been 'small…compared to what it could have been had the interest been reinvested.'
4.13
In 2010, Diageo Australia agreed to pay the same group of 36 recognised survivors an additional goodwill payment for a period of 18 years. These payments were procured after negotiations led by Mr Ken Youdale.
Assessments for the payments
4.14
Prior to receiving the goodwill payments, survivors were assessed to understand their level of disability. Ms Lesley Fletcher advised the committee that these assessments were undertaken by Professor Janet McCredie, Professor Earl Owen and Mr Peter Semmler QC over a three week period in 2010 at Diageo's expense.
4.15
At the end of the assessments, thalidomide survivors were provided with a letter that advised them what category they were placed into, but they were not provided with copies of the assessments.
4.16
Mr Peter Gordon explained that thalidomide survivors may not have been provided with a copy of their records with a view to protecting their confidentiality. Reflecting on Mr Youdale's actions in coordinating the assessments, Mr Gordon told the committee:
…it was important to Ken [Youdale] to respect the integrity and the confidentiality of each of the 46 people who had given him a power of attorney. A lot of them know each other, and a lot of them want to keep much of their detail private. A lot of the people who were helping him in the process were beneficiaries themselves. So everything that was done, including the signing of confidentiality agreements, was done for a reason that made sense with the thalidomide community at that time...
4.17
The committee understands that five copies of each survivor's assessment were made and that, while survivors do not have a copy, copies of all of the assessments may still exist.
Structure of the payments
4.18
Mr Peter Gordon, a lawyer who helped to negotiate the payments, told the committee that Diageo agreed in 2010 to pay thalidomide survivors $35 million net present value. Mr Gordon explained that this amount had been offered because it represented parity with the amount of money that had been provided by Diageo to thalidomide survivors in the United Kingdom.
4.19
These goodwill payments are provided to survivors through a trust, known as the Thalidomide Australia Fixed Trust. The trustees disperse the funds received from Diageo Australia to survivors on 1 April each year. The payments are provided on a sliding scale according to the survivor's level of disability as assessed in 2010. The Trustee of the Thalidomide Australia Fixed Trust and Ms Lisa McManus, Director of the Thalidomide Group Australia told the committee that there were five levels of payment.
4.20
Due to a confidentiality agreement, survivors were not able to inform the committee about the exact amount of money they were receiving from Diageo Australia, however, the committee understands that in 2018 the 36 survivors shared in $2 190 260 and that this amount is not increased each year to account for inflation. The Thalidomide Group Australia would like the Australian Government to match this amount.
4.21
Mr Gordon explained to the committee that the payments were front-loaded to ensure that thalidomide survivors shared in as much of the $35 million ex gratia payment as possible. Mr Gordon advised that if approximately $3 million is dispersed each year, then the goodwill or ex gratia payments will expire in 2028. If one or more of the thalidomide survivors die before the payments expire, the amounts that would otherwise have been paid to them will be retained in the pool and dispersed to the remaining thalidomide survivors at the end of the period.
4.22
However, Mr Magazanik told the committee that these payments had not been matched to needs, but were calculated on a legal basis:
The 1970s, 2010, 2015—the payments then were never intended to match needs. Those were part of a legal process. It was all about what we could get, what would the defendant pay…One ought not look at the payments that are being made or that were made as having been intended to match need.
4.23
The Australian Government has ensured that these payments are tax exempt and are exempt from the social security income assets test.
Compensation provided to thalidomide survivors recognised in 2010s
4.24
In the 2010s, a class action against the manufacturer and the distributor of thalidomide was initiated on behalf of a group of 107 thalidomide survivors who had not previously been compensated. The group was comprised of 95 Australian survivors and 12 survivors from New Zealand. The survivors were represented in this action by a legal team led by Mr Peter Gordon, leading to this group of survivors sometimes being termed the 'Peter Gordon' group.
4.25
In 2014, the class action was settled by the distributor, Diageo Australia, for approximately $89 million. The amounts provided to each participating survivor was calculated according a complex formula that accounted for their level of disability and the strength of their legal case. This meant that the settlements varied from tens of thousands of dollars to multi-million dollar sums for survivors with the most severe injuries.
4.26
Despite the committee's endeavours to hear from them, thalidomide survivors from this cohort were not the major contributors to this inquiry.
Unrecognised survivors
4.27
The committee received some evidence that there may be Australian thalidomide survivors who have not yet been formally recognised and compensated. The Department of Health advised the committee that it does not know how many thalidomide survivors live in Australia. The Department of Social Services also advised the committee that no analysis had been performed by the Department to ascertain how many thalidomide survivors lived in Australia.
4.28
In her role as the Secretary of Thalidomide Australian Incorporated, Ms Lesley Fletcher advised the committee that even finding people who were known to be thalidomide survivors was difficult. Mrs Fletcher started trying to identify how many thalidomide survivors live in Australia in 2008. Between undertaking full-time work and being a parent it took Mrs Fletcher two years to try and identify the 40 Australian and nine New Zealand survivors who were known to Diageo.
4.29
One complicating factor in identifying how many thalidomide survivors are in Australia is that survivors may not be aware that thalidomide is responsible for their injuries. Mandy, a thalidomide survivor who spoke to the committee in Melbourne, explained that in some cases efforts had been made to disguise the cause of the child's injuries to try and save the mother from feeling guilty:
When I was born, actually, my father was a pathologist and he did a big cover-up that I wasn't thalidomide so that my mother wouldn't feel guilty about taking one tablet. So he…put my disability down to a virus. I went through the whole of my younger years, up until my early 30s, thinking my disability was from a virus. So I wasn't included in that first compensation.
4.30
The search for thalidomide survivors may also be complicated if medical science demonstrates that thalidomide can have an effect later than was previously thought. In Chapter 2, it was noted that there is a time-sensitive window within which thalidomide causes specific types of malformations, but Professor Neil Vargesson told the committee that, when thalidomide was applied outside the time-critical window, thalidomide could still result in mild damage to the embryo's internal organs. Professor Vargesson explained that, in these cases, the damage caused to the internal organs could potentially remain undiagnosed until a person developed kidney or liver function problems in middle age, if it was diagnosed at all.
4.31
Professors Janet McCredie and Neil Vargesson agreed that if this was the case then there could be many more unrecognised thalidomide survivors who did not know that their injuries had been caused by thalidomide.
Committee view
4.32
The committee recognises that there are two differently compensated groups of thalidomide survivors in Australia. Given their limited engagement in the inquiry, the committee is not in a position to assess the needs of thalidomide survivors who were party to the class action. However, the committee accepts that the originally recognised group of thalidomide survivors are in need of some additional financial support. As Mr Magazanik observed, the payments thalidomide survivors have been provided were determined based on legal factors and were never intended to match their needs. The committee considers that even though these thalidomide survivors have received some compensation, it does not appear to be adequate to meet their needs either now or into the future.
4.33
The committee recognises that there is a third group of Australian thalidomide survivors who to date have not been recognised or compensated. The size of this group is currently unknown and the Australian Government has not yet performed any work to understand it. The committee also notes that the question of how these unrecognised thalidomide survivors might be able to be compensated has not yet been determined.
4.34
In the committee's final report it will consider what types of financial support thalidomide survivors require and the process by which those supports should be determined.
Government responses to thalidomide in other countries
4.35
Thalidomide survivors indicated to the committee that the Australian response to thalidomide malformations has been less comprehensive than the responses in other countries. This section outlines some of the approaches that have been taken in other countries to support thalidomide survivors and provides options that could be considered in Australia.
4.36
The payments and supports detailed below are only those provided by governments and does not include supports that thalidomide survivors may be receiving from the distributor or manufacturer in addition to these payments.
Lump sum compensation or one off capitalisation upon recognition
4.37
Some countries have supported their thalidomide survivors with lump sum payments or one-off capitalisation to allow thalidomide survivors to invest in supports.
4.38
Canada, Ireland, Germany, Spain and Sweden all provide examples of this form of assistance, although the quantum provided has differed in each country.
Lump sum by assessed level of disability
4.39
Lump sums that have been provided to thalidomide survivors have been provided according to an assessed level of disability in Ireland, Germany and Spain.
4.40
Irish and German thalidomide survivors were provided with a one-off payment according to an assessed level of disability in the early 1970s. The Irish State Claims Agency report into Compensation for Thalidomide Survivors delivered in 2010 notes that Irish thalidomide survivors received lump sum payments from both the German and Irish Governments in 1972 and 1973 respectively.
4.41
These payments were provided on a scale according to the thalidomide survivor's level of disability. According to the Irish State Claims Agency, the lump sums provided by the German Government varied between DM7500 (IR£1250) and DM25 000 (approximately IR£4200) and the amounts provided by the Irish Government varied between IR£6,600 and IR£21,300.
4.42
Germany continues to provide its one-off capital compensation according to the thalidomide survivor's level of disability. Over the course of the past decade, Germany has increased the pensions and benefits available to thalidomide survivors four times. Since 2017, newly recognised thalidomide survivors receive between €1278 and €12 782 depending on their assessed level of disability.
4.43
In 2010, Spain provided thalidomide survivors with a one-off lump sum according to their degree of disability. Under this payment thalidomide survivors received €30 000, €60 000, €80 000 or €100 000 provided they had been assessed by an autonomous government health institute and were able to provide certain documentation that demonstrated their identity and proof of their mother's residence in Spain between 1960 and 1965.
4.44
The Thalidomide Group Australia has requested that the Australian Government consider a one-time payment of up to $500 000 depending upon the thalidomide survivor's assessed level of disability.
Fixed lump sum
4.45
Canada and Sweden on the other hand, have provided a fixed lump sum to all thalidomide survivors regardless of level of assessed disability.
4.46
Canada has provided its thalidomide survivors with a number of rounds of compensation. In 1990 the Canadian Government established the Extraordinary Assistance Plan. The Extraordinary Assistance Plan was a one-time extraordinary payment to survivors that averaged $65 000 to provide 'special transportation, housing or other needs not covered by provincial assistance programs'. The Thalidomide Victims Association of Canada noted that this money was spent 'almost immediately' on adaptations to cars, homes and workplaces and on technical devices that were designed to help with zippers and buttons ect.
4.47
In 2015, the Canadian Government announced 'an immediate tax-free lump sum payment of $125 000 to each survivor to help cover urgent needs'.
4.48
In January 2019, the Canadian Government announced that it would increase the lump sum payment to newly recognised thalidomide survivors from $125 000 to $250 000 and would pay all recognised survivors an additional $125 000. Announcing the increase, the Minister of Health advised that the tax free lumps sum payment was to help thalidomide survivors 'cover urgent care needs'.
4.49
According to Thalidomidestory.com, in 2005 Swedish thalidomide survivors received a one-time payment of €55 000 per person from the Swedish Government.
Ongoing support payments
4.50
In addition to lump sum payments, some governments have chosen to provide an annual or monthly allowance or pension to thalidomide survivors. Countries who have adopted this form of support include Germany, Canada and Ireland.
Administered trusts or funds
4.51
In some cases, governments have preferred to provide money to a foundation or trust that has been established either by the distributor in association with thalidomide survivors or by government to provide certain functions. In some cases the trust can simply act as a conduit between the source of the funds and the thalidomide survivors and in other cases the body can be used as a vehicle to conduct research and to provide services that may assist thalidomide survivors.
United Kingdom
4.52
An example of a trust that was established by a distributor is The Thalidomide Trust in the United Kingdom. The Thalidomide Trust has operated in the United Kingdom since 1973 when it was originally established as part of the settlement between Distillers Company Ltd and British thalidomide survivors.
4.53
Despite this compensation being provided, the UK Thalidomiders Campaign Team advised that it was insufficient to cater to the needs of most thalidomide survivors. Reflecting on this, the UK Thalidomiders Campaign Team told the committee:
These inadequate compensatory sums from the Thalidomide Trust have never been enough to allow Thalidomiders to invest properly in their special needs. Adaptations such as foot-steering or adapting a vehicle to be driven from the wheelchair have been too expensive to afford... Expensive kitchen or bathroom adaptations were financially beyond the reach of most.
4.54
In addition to sums paid to offset tax already paid, the British Government made contributions to the Thalidomide Trust in 1996, 2010 and 2012.
4.55
In 2010, the British Health Minister Mike O'Brien MP announced that the government would contribute £20 million to the Thalidomide Trust as part of a pilot scheme to help meet the health needs of survivors. The pilot scheme empowered the Thalidomide Trust to provide money to survivors for a broad range of health related expenses including:
Independent mobility – anything that helps you to lead an independent life, and reduces your vulnerability to harm (vehicles, vehicle adaptations, wheelchairs, taxi-ride etc).
Home adaptations – anything to allow you to lead a safe and independent life in your own home as far as possible, with subjecting yourself to unnecessary stress or strain, or doing things that could be harmful.
Communications technology – systems and things to help you maintain your connection to people and the world at large, and again to protect your body (including sensory organs) from harm and vulnerability.
Medical treatment costs – can be any kind of therapy, private health care, operations or rehabilitation if not already provided by the [National Health Service].
Respite – therapeutic breaks for the individual and for their carers.
Personal assistance – including care in the general sense, but also for a whole range of tasks needed at home or work that you would normally do if you didn’t have a disability, but cannot – or would involve putting your body at risk of further damage.
Social activities – anything to help get you out, or reduce isolation and improve your mental and physical well-being.
4.56
Miss Michaelina Argy, Deputy Chair of the National Advisory Council to the Thalidomide Trust explained that the Thalidomide Trust distributed the
£20 million in accordance with the points system that had established in 1973 to indicate a survivor's level of disability for compensation purposes.
4.57
One survivor who lives in the United Kingdom told the committee that by providing a health grant that can be spent outside of the National Health Service, the government was explicitly recognising that thalidomide survivors have special needs that the regular health service cannot adequately accommodate.
4.58
In 2012, the Government of the United Kingdom agreed to contribute an additional £80 million over 10 years to the Thalidomide Trust.
4.59
In 2017 the Government of the United Kingdom moved to ensure that the amounts survivors received from the Thalidomide Trust were not assessed in determining whether they were eligible for other state benefits.
Japan
4.60
In 1974, Japanese thalidomide survivors reached a settlement with the distributor, Dai Nippon Pharmaceutical and the Japanese Government.
4.61
To distribute the settlement, the Japanese Government has established a national centre known as Ishizue. Ishizue operates on a tri-partite basis between the distributor, the Japanese Ministry of Health, Labor and Welfare and Ishizue. Today, the Ishizue does far more than distribute payments, it coordinates projects to support thalidomide survivors and raise awareness about their needs.
4.62
To support thalidomide survivors the Ishizue manages the following projects:
consultation and support on health management and treatment for thalidomide survivors;
paying pensions to thalidomide survivors four times per year;
conducting research on the effects of thalidomide;
consulting on housing remodelling, auxiliary supports and advocates for disability supports (including running a program to support disabled driving);
advocating for policies to prevent damage related to drugs and their side-effects; and
operating a mutual assistance forum to exchange information with other thalidomide survivor groups and organising events.
4.63
As part of its health consultation, Ishizue provides referrals, medical information to doctors, assists with medical expenses and consults with survivors on how they can best live independent lives. Some of the forms of independence that are listed in the 2018 business plan include living assistance and housing improvement, assistance with the costs of sign language interpreters and domestic assistance.
4.64
Ishizue also conducts research 'with the objective of grasping the actual condition' of thalidomide survivors.
Canada
4.65
In 2015, the Canadian Government established the Thalidomide Survivors Contribution Program. The Thalidomide Survivors Contribution Program was outsourced to a third party company to:
assess and reassess the health status of thalidomide survivors;
deliver ongoing annual support payments;
manage the Extraordinary Medical Assistance Fund; and
determine the eligibility of people who self-identify as thalidomide survivors.
4.66
The ongoing support payments in Canada are paid on a sliding scale according to the survivor's level of disability. Survivors can apply to have their health reassessed if they think that their level of functionality has decreased since their previous assessment.
4.67
The Extraordinary Medical Assistance Fund can be used to assist with specialised health support costs and home and vehicle modifications for thalidomide survivors if they were not already covered under a territory or provincial health plan.
4.68
The Extraordinary Medical Assistance Fund was administered by Crawford and Company (Canada) on behalf of the Canadian Government. If thalidomide survivors wish to access the fund, they need to submit an application which would then be assessed.
4.69
In January 2019, the Canadian Health Minister announced that to account for 'an anticipated increase in the number of recognized thalidomide survivors' the Emergency Medical Assistance Fund would be increased from
C$500 000 to C$1 000 000 per year.
Direct payments
4.70
Germany provides thalidomide survivors with two annual payments: one is an annual basic allowance and the other is a payment that is scaled according to the thalidomide survivor's level of disability to cover specific needs.
4.71
An English translation of The Law on the Contergan Foundation for Disabled People as amended by the Fourth Amendment 2017 available on the Contergan Foundation's website provides that each thalidomide survivor is entitled to a basic annual allowance of €4800. Insofar as the committee is aware, there is no restriction on how that allowance can be spent.
4.72
In addition, since 2009 most German thalidomide survivors have been entitled to an annual 'special payment'. In Germany, thalidomide survivors are assessed according to their level of disability on a 100 point scale. Thalidomide survivors who have a score of more than 10 are entitled to a 'special payment' if the Contergan Foundation's assets can support it. These payments range between €876 and €9900 per year depending on the survivor's level of assessed disability.
4.73
The English version of the law on the Contergan Foundation website provides that the 'special payment' is made to cover 'specific needs'. It is not clear if that term imposes a restriction on what the funds can be used for.
Monthly payments
4.74
The German, Italian and Austrian Governments have provided thalidomide survivors with monthly payments.
4.75
In Germany, thalidomide survivors receive a monthly Contergan pension of between €662 and €7480 depending upon the survivor's level of disability. As noted above, this amount has been increased four times in the last decade and is increased each year. The English translation of the law requires the Minister to adjust the amount of the Contergan pension 'at the same percentage the statutory pension insurance is changed'.
4.76
The Italian and Austrian Governments have only provided support to their thalidomide survivors relatively recently. Italy first provided monthly pensions in 2007 and Austria commenced paying monthly pensions in July 2015.
4.77
According to Thalidomidestory.com, Austria has two groups of thalidomide survivors who have been compensated: one group of 12 thalidomide survivors are compensated through the German Government system and another group of 25 thalidomide survivors that started receiving payments from the Austrian Government in 2015. The Austrian Government payments are reported to be approximately €425.80 per month.
Comments from overseas survivors in receipt of assistance
4.78
The committee received submissions and correspondence from thalidomide survivors from various parts of the world to explain how support from the government in their country had helped to improve their lives.
4.79
In particular, the committee received correspondence from a number of German thalidomide survivors. One survivor summarised that the increase in German Government compensation allowed German thalidomide survivors the ability to have sufficient physiotherapy, make modifications to their homes and cars, pay for carers, purchase special aids and wheelchairs and to save for old age.
4.80
Another German thalidomide survivor told the committee that it is only with the additional support from the German Government that they are able to live independently. For these survivors, the increased compensation allowed them to increase their financial security, independence and quality of life and to do so with less pain.
4.81
The committee received similar comments from Canadian thalidomide survivors who received the lump sum payments and pensions. One survivor told the committee that receiving the pension had put their mind at ease as they aged:
I'm now able to afford physiotherapy for all my joint problems. I'm also able to have some adaptations to my home, to make it a lot safer for me. Just knowing I have this pension, gives me piece of mind [sic] as I get older, and knowing that I will need more help to have the best quality of life later.
4.82
Part of the reason these pensions appear to mean so much to thalidomide survivors is that without them, thalidomide survivors have not been able to properly invest in their health. Miss Argy from the National Advisory Council to the Thalidomide Trust in the United Kingdom argued that the British experience demonstrated that it was necessary to provide survivors with lump sum payments to allow them to invest in their health and mobility needs:
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 that they need to make now, a catch-up for the previous inability to invest properly in their needs, followed by an annual income for them to spend freely, without encumbrance, on the multitude of day-to-day things that will help them to stop any further decline in their health or mobility.
4.83
Thalidomide survivors from the United Kingdom who submitted to the inquiry considered that the health grant had made a significant difference to their health and independence. One survivor told the committee that with the financial support they received, they were able to live independently and stay in control of their pain.
4.84
Another survivor from the United Kingdom told the committee that the health grant had helped to extend their working life:
…the government grant has made a huge difference to me. It's allowed me to have physiotherapy privately whenever I need it, massage therapy privately whenever I need it and Pilates lessons on a one-to-one to enable me to carry on working without pain. It pays for assistance in the home…so I can carry on living in my own home.
4.85
The survivor also noted that the grant had helped to modify her garden, adapt her bathroom to allow her to look after her own personal hygiene and allowed her to pay for taxis because she is now unable to drive or manage on public transport.
4.86
Miss Argy from the National Advisory Council to the Thalidomide Trust told the committee that the grant was successful because it allowed survivors to spend money on supports that they needed, even if the reason they were needed may not be obvious to a person without the disability. Miss Argy provided some examples for the committee about how heating and cooling could affect thalidomide survivors' independence:
If you're very hot and you're sweating then, as a woman, putting your underwear on is impossible…you need a carer to dress you. In this country, if we pay for air conditioning we can dress ourselves. If we went to our benefits system and said 'I would like you to pay for my air conditioning,' they'd laugh us out of the house…I and people like me and short-armed people, pay extra to have underfloor heating so that I can walk around in bare feet and use my feet at all the times of the day and night…If I can have extra-warm flooring, if I can have air conditioning, I can manage some of that stuff on my own.
4.87
The Thalidomide Victims Association of Canada advised the committee that the package Canadian thalidomide survivors received from the Canadian Government similarly provided survivors with physical independence and the independence to make their own choices. After living without the support, the Thalidomide Victims Association of Canada described what the support package meant for Canadian survivors:
This financial support took into consideration the broad range of needs that survivors have and gave us the independence to make our own choices. For many Canadian thalidomide survivors this support was life-altering and made it possible for them to finally live with dignity.
Perspective of Australian thalidomide survivors
4.88
Australian thalidomide survivors who submitted to this inquiry considered that additional financial support from the Australian Government would allow them the ability to invest in their health. As noted in Chapter 2, many thalidomide survivors and their families have led lives that have been less economically beneficial than if they had not had their thalidomide injuries. As a result many Australian thalidomide survivors have felt less able to invest in their care.
4.89
Thalidomide survivors advised the committee that if they had access to a lump sum they would be able to purchase the services that they needed rather than attempting to rely on other services, such as the NDIS that may take longer to procure the same services. For example, access to a lump sum may alleviate the problems faced by the survivors, outlined in Boxes 3.1 and 3.2, in procuring the services that they needed.
4.90
Survivors who spoke to the committee considered that some additional compensation from the Australian Government would allow them the freedom to invest in their care.
4.91
Submitters and witnesses who engaged with the committee often commented on the cost of healthcare in Australia. As noted above, thalidomide survivors require, and are likely to continue to require, surgery and medical assistance as they age. The Thalidomide Group Australia and some thalidomide survivors, including some who made confidential submissions to the inquiry, requested a Gold Card or something similar to assist with the cost of health care.
4.92
Concerns about the cost of healthcare are not peculiar to Australia and different governments have developed different ways to meet the health needs of survivors. This list is not a comprehensive list of the health programs that have been offered to survivors around the world, but it is an illustration of the types of health supports that governments in comparative countries have offered their survivors.
4.93
As noted above, Australian thalidomide survivors are struggling with health concerns and it is likely that they will require additional supports as they age. Australian thalidomide survivors advised the committee that if they had a health grant or a medical fund, then they would have the flexibility to pay for medical procedures, equipment, adapt their homes and pay for care providers according to their individual needs.
4.94
One survivor told the committee that a health grant or funds that they could put toward their care would allow them to access private care:
I would love to have private health/ dentistry and not be at the mercy of the public health system as I feel that when things get bad for me health wise it won't just be one thing, it will be a whole bunch of things go bad in rapid succession.
Tax relief and other government programs
4.95
Some governments have found more direct ways to provide services to thalidomide survivors.
4.96
For example in Sweden, Norway and Denmark thalidomide survivors are eligible to receive free wheelchairs, between four and 24 hours per day of personal assistance, free car adaptation and free assistive technology in the workplace.
4.97
In Italy, the government added 'thalidomide syndrome' to a list of chronic diseases, which, according to the Italian Thalidomide Association, means that 'all recognised thalidomidicis will be entitled to free health services concerning the control of their condition' although the extent of the services required is determine by the survivor's doctor.
4.98
The Irish Government has also allowed thalidomide survivors to receive a disability allowance (at their election), provided survivors with a grant to adapt their vehicles and facilitated their participation in a scheme that exempts them from certain vehicle related taxes.
4.99
The committee understands that the Irish Government has provided health related supports to its thalidomide survivors, including a medical card without means testing and funding for artificial limbs and appliances.
4.100
The health boards also reimbursed the parents of thalidomide survivors for medical or legal expenses that they may have incurred after the settlement.
Apologies
4.101
In January 2010, the Government of the United Kingdom apologised to its thalidomide survivors, expressing 'deep sympathy for the injury and suffering endured by all those affected'. In the House of Commons it was recognised that the statement of regret and the additional funding were the product of a 'long-standing and concerted campaign' by thalidomide survivors, the Thalidomide Trust and it National Advisory Council.
4.102
Miss Argy, a British thalidomider and Deputy Chair of the National Advisory Council to the Thalidomide Trust, expressed the deep impact that the statement had on British survivors:
It was the most marvellous, magical experience to sit there and hear the Minister in the House of Commons issue that statement of regret. It's like the world stopped for the time he was talking.
4.103
Many Australian survivors and their supporters who submitted to the inquiry called for the Australian Government to provide an apology.
4.104
As one survivor told the committee:
From all these politicians, I have been eagerly awaiting one word and that is 'sorry'—sorry for the drugs being allowed in Australia, sorry for the families that have been affected by the drugs, sorry for the survivors who have had to live with these disabilities.
4.105
Some survivors told the committee that receiving an apology would help to alleviate some of the emotional pain that survivors and their families have experienced. For others, an apology would help to recognise the role that the Australian Government played in their lives.
4.106
Mary, another survivor told the committee that an apology would recognise the role that the Australian Government had played in thalidomide in Australia:
It's about acknowledgement. It is as much about saying, 'We are sorry we ignored you. We are sorry we failed you in the first instance.' It is admitting their role in our lives.
4.107
The Department of Health advised the committee that no advice has, to date, been provided to the Minister about an apology.
Committee view
4.108
The committee understands that other countries have provided compensation to their thalidomide survivors in the form of lump sum payments, monthly or annual pensions, health care grants or funds and provided for access to other special benefits that may assist survivors.
4.109
The committee accepts that there is a broad scope for Australia to do more to assist its survivors. The committee understands that the Australian Government commissioned a report from Maddocks Lawyers to help understand the options that may be available to the Commonwealth. The committee notes that this report has not yet been released and that to date the Australian Government has resisted its release on the grounds of public interest immunity. In its final report, the committee will consider the extent to which the options described above may be suitable in an Australian context.