Those fine threads of independence that were ours, are quickly slipping away. Daily, our needs increase. Daily, we rely more and more on the support of others. And daily, we move closer to requiring full-time care.
3.1
Thalidomide survivors have been largely self-sufficient for more than 50 years. Thalidomide survivors have worked (where possible), invested and supported themselves with limited assistance from the Australian or state and territory governments. This means that the financial burden associated with medical treatment, assistive equipment and home and vehicle modification has largely been incurred by thalidomide survivors and their families. However, as noted in Chapter 1, support from the distributor may have assisted with some costs.
3.2
The previous chapter explained the impacts that injuries caused by thalidomide pose for thalidomide survivors and their families. It noted that in addition to the congenital malformations caused by thalidomide, thalidomide survivors are experiencing premature aging and their bodies are deteriorating at a faster rate than the broader population because:
survivors have been required to use their bodies to maintain their independence in ways other people have not;
some of the internal injuries caused by thalidomide may only be presenting with early onset ageing; and
some thalidomide survivors are experiencing nerve neuropathy.
3.3
This chapter explores what thalidomide survivors need to maintain their independence and quality of life for the longest period of time possible and considers whether the supports that are currently available to them will be adequate to support them if they require additional assistance.
3.4
As noted in Chapter 2, survivors' circumstances vary widely. Thalidomide survivors who contributed to the inquiry detailed a wide array of injuries that have affected their lives, revealing that a broad spectrum of needs should be considered in determining how best to support thalidomide survivors into the future.
Health requirements
3.5
As noted in Chapter 2, many thalidomide survivors are concerned about their financial futures and their ability to meet their increasing medical needs as they age. If thalidomide survivors are to maintain their independence and have the highest possible quality of life for as long as possible, they are likely to need considerable health supports and assistance in paying for those services.
Surgeries
3.6
In Chapter 2, it was noted that thalidomide survivors have already undergone significant surgeries to improve their quality of life. In some cases, such as in the case of women who have had mastectomies, thalidomide survivors have felt compelled to have significant surgery in order to maintain their independence and ensure that their conditions were not exacerbated.
3.7
Survivors and their families reported that they have needed to pay for these procedures out of their own pockets and have not been specially assisted or subsidised. Survivors told the committee that these costs varied from modest amounts to approximately $40 000 for a major back operation.
3.8
Thalidomide survivors are currently experiencing the effects of premature ageing because of the effects of thalidomide. Survivors advised the committee that they have been told by medical professionals that they are almost certain to require further surgery and medical intervention because of these effects including:
open heart surgery and other surgeries to try and repair the damage thalidomide has caused to internal organs;
shoulder reconstructions; hip replacements; arthroscopies and knee replacements as a result of needing to contort their bodies to carry out routine tasks and strive to maintain their independence;
mastectomies to reduce pressure on a survivor's back and neck and prevent injuries;
ear and eye surgeries to manage the effects of their thalidomide injuries; and
dental surgery as a result of using their teeth to perform tasks such as dressing, opening jars, carrying shopping and turning keys in locks.
3.9
As noted in Chapter 2, thalidomide survivors and their families consider that they are entering a period of financial vulnerability. Thalidomide survivors and their families have not been able to save or accumulate sufficient superannuation either because the effects of thalidomide have reduced their capacity to work or because their injuries have required their spouse or family members to take time out of their own careers to become carers. As a result, some thalidomide survivors are concerned that they will not be able to afford to have the surgery or access the supports that they need based on their existing resources.
3.10
Survivors are concerned that, other than the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme, there is no government assistance to reduce the cost of medical procedures. The National Disability Insurance Scheme (NDIS), for example, does not pay for medical expenses, even if they are related to or are necessary to treat a survivor's disability.
Physiotherapy, massage, chiropractic
3.11
Thalidomide survivors advised the committee that many of them live with chronic pain because of the way their injuries have required them to manipulate their bodies to compensate for the absence of limbs or the absence of strength in affected limbs. To deal with this pain and to maintain the functionality that they have, survivors often require regular support from a physiotherapist, massage therapist or chiropractor.
3.12
Some thalidomide survivors told the committee that therapy is essential to enable their continuing mobility. The following comment from the spouse of a thalidomide survivor is representative of comments the committee received about the necessity of these forms of therapy to manage pain and to sustain mobility:
…without the physio [my wife] would lose her mobility and quality of life and her pain levels would possibly become unbearable.
3.13
Other thalidomide survivors told the committee that physiotherapy, chiropractic services and body massages form part of a broader regime designed to manage their pain and assist with maintaining mobility:
With my chronic pain throughout my body I have to have regular Chiropractic sessions, Osteopathy, massage & dry needling, plus a cocktail of painkillers.
Cost of physiotherapy, massage and chiropractic services
3.14
While these supports are vital for thalidomide survivors, they can also be very expensive to access on a regular basis. The committee received evidence that some thalidomide survivors require these services as often as once or twice a week and this could cost survivors 'a couple of hundred dollars per week'.
3.15
Some survivors and their families have submitted that they consider that their financial situation is too precarious for them to afford physical therapy, even though they may be in constant pain. The committee received one submission from a thalidomide survivor who advised that family members were providing massages in lieu of professional assistance to try and alleviate pain because he did not consider that he was financially able to obtain those services.
3.16
Thalidomide survivors and their families who provided evidence to the committee advised that survivors would use physiotherapy, chiropractic and massage therapy services, or use them more regularly, if the funds were available.
Supports currently available
3.17
The Department of Health advised the committee that thalidomide survivors may be able to access allied health services in one of three ways:
through public-sector allied health services provided by state and territory government programs;
through private allied health services that may be included as part of a private health insurance policy held by the survivor; or
the survivor may be eligible for services under the MBS Chronic Disease Management items.
3.18
The Department of Health explained that Chronic Disease Management items are available to people with chronic health conditions after consultation with a General Practitioner (GP) to develop a management plan. Once a management plan has been developed, the patient can be referred by their GP for up to five allied health services each calendar year that are considered to be directly related to management of the patient's chronic condition.
3.19
The committee was advised by the Department of Health that the eligible Chronic Disease Management allied health services include audiology, chiropractic, mental health work, occupational therapy, osteopathy, physiotherapy, podiatry and psychology. Massage therapy is currently not an eligible service.
3.20
The Thalidomide Group Australia advised the committee that as no comprehensive survey of the health of thalidomide survivors has been undertaken it was unable to say whether or how many members of Thalidomide Group Australia have a Chronic Disease Management Plan.
Health professionals' understanding of thalidomide injuries
3.21
Thalidomide survivors raised concerns that their thalidomide injuries are not well understood by the medical professions or in the wider community. Given the complex nature of their conditions, it is vital that thalidomide survivors receive suitable medical care. In some cases, health professionals have declined to treat survivors because they did not consider that they had the expertise to do so.
Lack of knowledge in the medical community about thalidomide
3.22
As noted above, thalidomide survivors require, and are likely to continue to require, treatment by a multi-disciplinary team of health professionals who understand the nature of thalidomide injuries and the best way to treat them.
3.23
Throughout the inquiry the committee tried to find medical and allied health practitioners in Australia who might be able to assist it to understand the challenges thalidomide survivors faced from a practitioner's perspective. In a number of cases, professional organisations advised the committee that none or almost none of their members had sufficient experience in treating thalidomide survivors.
3.24
Clinicians told the committee that most specialists, such as orthopaedic surgeons, do not have the relevant expertise to understand the effect that thalidomide may have had to be able to properly diagnose and treat thalidomide survivors' injuries. Thalidomide survivors told the committee that, in some cases, this paucity of knowledge extended to even the most basic understanding of thalidomide:
In 2010, many doctors were now asking me, 'What is wrong with you?' I would say, 'Thalidomide,' and they would say, 'What is that?'
3.25
Thalidomide survivors told the committee that a lack of knowledge among health professionals about thalidomide was common, meaning that survivors felt that they had to educate medical and health practitioners about thalidomide:
I've lived in several states over the years and still have had no luck in finding a GP or a medical specialist who has been educated about thalidomide. I'm always having to educate them.
3.26
The committee was informed that this education could even include basic medical tasks such as measuring blood pressure or drawing blood if thalidomide survivors had malformed limbs.
3.27
In terms of promoting awareness about thalidomide injuries and their impacts, the Department of Health advised the committee that it is the role of the Royal Australian College of General Practitioners (RACGP) and the Australian College of Rural and Remote Medicine (ACRRM) to provide professional guidance to the medical profession.
3.28
The ACRRM advised the committee that while none of its members had been called on to treat a thalidomide survivor, it was willing 'to play a useful role in raising awareness and disseminating information within our membership'. The RACGP advised the committee that due to the small number of thalidomide survivors in Australia 'the majority of GPs will never have a consultation with a patient requiring ongoing management of thalidomide consequences'. As a result, to ensure that GPs remain within their clinical scope of practice the RACGP suggested:
The most helpful course of action with this small number of survivors is for the GP to refer to a clearly identified assessment service so survivors receive a consistent evidence based assessment.
3.29
Part of the problem with the approach suggested by the RACGP is that no such service currently exists in Australia.
3.30
Ms Elizabeth Newbronner, a research fellow at the University of York, told the committee that in the United Kingdom the Thalidomide Trust had worked to identify a network of specialists who had an interest in and understanding of thalidomide injuries. Ms Newbronner suggested that identifying a select network of practitioners who have an interest in thalidomide injuries may be more beneficial to survivors than attempting to promote a widespread understanding of thalidomide.
3.31
If that network of practitioners could be identified, in the absence of Australian expertise, international linkages might be able to be made to harness international expertise. The committee has been advised that there are multi-disciplinary clinics in Hamburg, Germany, in Nijmegen, Netherlands and in Stockholm, Sweden that assist thalidomide survivors.
3.32
Mr Lance Fletcher, Founder and President of Thalidomide Australia Incorporated, told the committee that survivor groups and others, especially in Germany and the United Kingdom, have expressed an interest in providing support to Australian thalidomide survivors and their health practitioners. Mr Fletcher noted that sharing knowledge would require some type of portal or infrastructure through which that knowledge could be shared:
They have been very generous in offering us their research outcomes, their medical knowledge and support; but we need to set up some way to tap into their information…we need a portal. We need a secure access point where we can get this information to our doctors so that they can treat us appropriately.
Committee view
3.33
The committee understands that survivors are in need of medical and allied health support to help maintain what mobility and independence they are able to retain for as long as possible. The committee understands that this can be quite expensive and while some support is available, the existing support does not appear to be sufficient to meet the existing or future needs of thalidomide survivors.
3.34
The committee is concerned that medical practitioners may not fully understand the effects of thalidomide injuries and why thalidomide survivors may need particular treatment. The committee considers that further work needs to be done to ensure that medical practitioners are better informed about the nature of thalidomide injuries. The committee notes evidence pointing to the need to identify practitioners in Australia who have expertise in treating thalidomide survivors and work with international clinics to make best-practice treatments available to thalidomide survivors in Australia. The committee considers that responsibility for this work should not be outsourced to survivors, but should be properly resourced by an appropriate body.
Aids to leading an independent life
3.35
While health supports are essential to maintaining mobility and relieving pain, aids and modifications can help to provide thalidomide survivors with the greatest degree of independence possible. In many cases, thalidomide survivors have already incurred the expenditure that is necessary to give them the independence and dignity they currently enjoy.
3.36
However, as thalidomide survivors age, they are likely to require additional assistance and need to either move homes or make further modifications to their homes to maintain a similar level of independence.
3.37
This is consistent with evidence the committee received from the UK Thalidomiders Campaign Team who advised that nearly 30 per cent of British thalidomide survivors expect to make further modification to their homes and 40 per cent of British thalidomide survivors have indicated that they expect to need to move house (for example to a house without stairs) as their health declines.
Home modifications
3.38
Thalidomide survivors told the committee that the nature of their injuries required their homes to be specifically configured to accommodate their needs. These modifications have placed a significant financial burden on thalidomide survivors and their families. In most cases thalidomide survivors needed to purchase their own homes in order to make the necessary modifications. As one thalidomide survivor told the committee:
Renting was never an option for me, as I required too many specific home modifications – beyond what a landlord would ever agree upon. Establishing a home catering to my specific needs was a very expensive exercise – costs of which [I] bore myself. Kitchen, bathroom and bedroom renovations specifically – have had to be very carefully designed to cater for my needs.
3.39
The range of modifications required includes benches to be a significantly different height, cupboard doors to have handles at the bottom to allow thalidomide survivors to open cupboards with their feet and modifications to facilitate access in a wheelchair.
3.40
To add to the challenge of modifying their homes, thalidomide survivors advised that they have found it difficult to find people who understand what needs to be done to cater for their injuries:
Home assist were sent out by the government and they offered to destroy our home both in terms of resale and practicality, and when they were finished [my wife] was still not going to be able to access the bathroom in a wheelchair. Best of all, we would have to pay for the work to be completed.
3.41
The committee received evidence that these modifications can be extremely costly. To provide an indication of cost, one Australian thalidomide survivor told the committee that their kitchen modification cost approximately $40 000, and other modifications (such as modifying external doors) cost another $20 000.
3.42
This is consistent with the evidence provided by a German survivor who advised the committee that a specialised kitchen that allowed them to reach the benchtops with their feet cost €20 000, a special toilet €5000 and a special wardrobe that they could access without their arms cost an additional €8000. A survivor from the United Kingdom advised that an appropriate kitchen cost £40 000, an electrically adjustable bed cost £3250 and solar powered windows and blinds cost £3800.
3.43
Thalidomide survivors and their friends and family noted that not only did the physical structure of the house need to be adjusted, but many of the objects within the home need to be purchased to suit the thalidomide survivor's needs. The friend of one survivor told the committee:
Every part of her home is specifically chosen or adapted to increase her level of independence – the furniture, cutlery, crockery, kitchen appliances, television, washing machine, dishwasher, household items, computer system, door locks, gate latch, handbag – the list is long and extensive.
3.44
These are all supports that thalidomide survivors and their families have had to fund to enable a degree of independence. To date, there has been little, if any, support to assist thalidomide survivors to modify their homes.
3.45
However, as thalidomide survivors age, many have indicated that, if they had the financial means to do so, they would make additional modifications to their homes to allow them to manage and remain in their homes.
3.46
Ms Elizabeth Newbronner explained that her research in the United Kingdom found that as thalidomide survivors age, their needs evolve meaning that aids or modifications that may have been appropriate a number of years ago may no longer be adequate. This means that even if thalidomide survivors may have previously received payments, these are not necessarily adequate to meet thalidomide survivors' needs going forward:
[Thalidomide survivors'] needs are continuing to evolve, and so their homes, cars and equipment also continue to need to be evolved. They're not one-off costs.
Vehicle modifications and mobility aids
3.47
Thalidomide survivors explained that having a vehicle provides mobility and independence. However, having a vehicle modified is very expensive and can take a long time, potentially making it unaffordable for some people.
Cost of vehicle modifications
3.48
One survivor explained that in her experience getting a vehicle modified can take a number of years:
With the amount of modifications required to ensure driving was a safe activity for me, it was unrealistic to purchase anything other than a new vehicle on the two (2) occasions I have done so. My first vehicle took four (4) years and my second, 18 months – to modify. I had no financial assistance whatsoever in meeting the modification costs of either vehicle. The modification costs of my second vehicle equalled the amount of the vehicle itself!
3.49
This is consistent with international evidence received by the committee that suggested that having a vehicle modified with foot steering cost one German thalidomide survivor €24 000. Ms Newbronner advised the committee that in some cases car modifications could cost up to £60 000.
3.50
Until the establishment of the NDIS, survivors have had to self-fund vehicle modifications and mobility equipment because no government subsidy scheme has existed. One submitter told the committee that she both needed to purchase the mobility scooter and pay to have someone modify it for her because no government funding was available to assist her.
3.51
Thalidomide survivors who use an electric wheelchair advised the committee that they need to purchase two wheelchairs to ensure that they are able to move at all times while the batteries were being charged on the other wheelchair at night.
Disabled parking permits
3.52
Thalidomide survivors and their partners reported that survivors have experienced difficulty in obtaining disabled parking permits at different times in their lives.
3.53
The wife of a survivor recounted her husband's recent experience applying for a disabled parking sticker:
In recent years [her husband] has applied to get a disabled parking sticker, as his arms are getting so much weaker, and it is very difficult for him to carry items which are quite light for a normal bodied person, but extremely heavy for [him]. He was denied this permit, basically, because NOTHING was wrong with his legs, and he could walk the distance.
3.54
Other thalidomide survivors have experienced similar difficulties in obtaining disability parking permits. This included survivors who had significant physical disabilities. When they were denied their respective permits, thalidomide survivors adopted different approaches. Some survivors continued to park in disabled carpark without the permit rather than try to carry parcels and shopping bags over greater distances. In other cases survivors managed the burden, despite the additional strain that it placed on their bodies.
3.55
Even if thalidomide survivors were successful in obtaining a disabled parking permit, the committee was told that individuals need to go back to a doctor for an annual confirmation that the parking permit is required. One thalidomide survivor issued a warning to others:
Other thalidomide people should be aware that it's a minefield to get a disabled parking [permit]. And then they want you to go in every year. My arms aren't going to grow back!
National Disability Insurance Scheme
3.56
The NDIS provides support to Australians under the age of 65 with a permanent and significant disability. The NDIS only funds supports that are 'most appropriately funded under the NDIS and are not more appropriately funded or provided through other general systems of service delivery or support services, such as the health system'.
3.57
Some thalidomide survivors noted that the NDIS is not yet available in all areas, but those who have had experience with it expressed concern that it will not be adequate to support them, either now or as they age.
3.58
Some thalidomide survivors are concerned because some of the people they know have not necessarily felt better supported under the NDIS. One thalidomide survivor told the committee about her early perceptions of the NDIS:
NDIS looks terrific on paper, though, in real life, it doesn't work, apart from the few very lucky participants who are better off with it, many I know are worse off once they are under the NDIS. It is not in my area…But I've been told already that they won't modify my bathroom as I want or need it done, they won't buy me a new mobility scooter, it is doubtful whether they will give me all new doors so that I can have keyless entry into every door in my house, imagine putting the key in your mouth and placing the key in the lock then turning it with your mouth.
3.59
Some thalidomide survivors are worried that if additional support is not forthcoming, the NDIS will be the only support that is available to them. For some survivors that prospect is distressing because they do not consider that the scheme is adequate to address their needs. One survivor who has been prominent in advocating for additional support for thalidomide survivors told the committee that there appears to be a mismatch between what policymakers consider the NDIS can deliver and the reality faced by thalidomide survivors.
Access and support available under the NDIS
3.60
To become an NDIS participant, a person must make an access request. If the participant is eligible, they will then be assessed and a plan will be developed. As noted above, one of the criteria for eligibility is that the person is under the age of 65. However, the NDIS will provide assistance to people over the age of 65 provided they joined the scheme before they turned 65 and they age in the scheme.
Is the NDIS adequate to accommodate thalidomide survivors' needs?
3.61
Thalidomide survivors raised concerns about whether the NDIS was sufficiently flexible to meet their needs. If it is not sufficiently flexible, then the scheme may not be able to provide supports that are of an appropriate type or in a timely manner.
3.62
The National Disability Insurance Agency (NDIA) told the committee that when a new participant comes in for their access decision, if the participant has a diagnosis that is well recognised it can be easier to understand the effect of that disability and therefore identify what they may need in order to function well. The NDIA explained that it is easier in those cases to determine what a participant might need because there is a code associated with the disability that allows a planner to see what other participants with that disability may have needed previously. The NDIA told the committee that it does not have a code that can assist planners to deal with thalidomide survivors:
We don't have a code for people who are thalidomide survivors, for the condition, in our system and, therefore, we don't count that group of people. It is most likely that, if you looked at our actuarial data, you would find most people in the scheme who are thalidomide survivors in a category such as 'other physical conditions', which is quite a large category.
3.63
Under the NDIS, if a participant's circumstances change, they need to undertake a plan review in order to increase any supports that may be in place. Occupational therapists, Ms Michelle French and Ms Amanda Cullen, told the committee that the evolving nature of thalidomide injuries, where needs can change dramatically and in a short period of time, could not be accommodated by the NDIS model.
3.64
The NDIA advised the committee that in September 2018 it announced the establishment of a complex disabilities pathway. Under this pathway, the NDIA considered that thalidomide survivors should be able to obtain a sufficiently individualised plan to meet their needs.
Are survivors' NDIS supports being reduced because of previous compensation?
3.65
The committee received conflicting reports from thalidomide survivors about whether the ex gratia payments that they received from the Thalidomide Australia Fixed Trust or the class action had been taken into account by the NDIA in developing their plan. Whether the sums were taken into account may have affected how much support the thalidomide survivor was eligible for.
3.66
Some thalidomide survivors told the committee that the NDIA asked during their planning meeting about any compensation that they may have received. In some cases, thalidomide survivors disclosed that they had received modest compensation and an ex gratia sum. In other cases, thalidomide survivors told the committee that they did not consider that they were able to disclose the amount that they had received because of the confidentiality agreement they signed as part of the agreement to provide the ex gratia payments and had informed the agency accordingly.
3.67
The NDIA told the committee that it was routine practice for planners to ask about compensation payments because the agency is required to consider whether a person should be required to take action to try and obtain compensation under the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act).
3.68
The NDIA observed that the NDIS Act contains a power for the Chief Executive Officer of the agency to disregard certain payments 'if the CEO thinks it is appropriate to do so in the special circumstances of the case'.
3.69
However, the Deputy Chief Executive Officer of the NDIA told the committee that it had received advice that it was not able to develop a standing exemption from the compensation considerations because of the way the NDIS Act is drafted:
It's not possible because of the way the act is constructed...We are required to ask that, just as we are required, unless there are reasons to exempt, to both recover costs and to consider future costs and future supports in the scheme against the compensation for future compensation. [sic] We're required to do that and there is no way, unless the act is rewritten that we can get around that.
3.70
The NDIA advised the committee that in order to develop a standing exemption for thalidomide survivors, there would need to be an amendment to the NDIS Act.
3.71
The NDIA advised the committee that in the interim, it may be able to develop fact sheets about thalidomide to assist planners to make consistent decisions and to ensure that the question about whether there are special circumstances is considered in each case.
Barriers to access experienced by thalidomide survivors
3.72
Thalidomide survivors raised concerns about some of the difficulties they had experienced when attempting to access the range of services that they had been offered by the NDIS. These included difficulties in accessing essential assistive technology and equipment to enable mobility.
Waiting times for essential services under the NDIS
3.73
The committee received a number of examples where supports that have been requested through the NDIS have taken an extensive period of time to arrive. Box 3.1 recounts the experience of a survivor who was trying to get a bidet replaced by the NDIS. The experience demonstrates that survivors have can wait up to 15 months for routine supports that are vital to their care.
Box 3.1: Case study – waiting times for essential services under the NDIS
I have been waiting 12 – 15 months to replace a Bidet… The bidet is an essential item for providing personal hygiene. All I wanted from the NDIS was to provide funding for a replacement. However the process required an initial evaluation by Occupational Therapists of my need for the bidet…It took several months for the OT report to be written and submitted and several months before a quote for supply and installation was provided to the [National Disability Insurance Agency]. As of this moment I have no idea where process is up to and all the while I must put up with a dirty bottom as I am unable to clean myself properly…if I had a lump sum funding I could simply purchase and have the bidet installed in a much shorter period of time.
3.74
The survivor explained to the committee that during the 15 or more months it took for the bidet to be replaced, the absence of that piece of equipment had a profound effect on his life:
I actually go to the toilet every day. I have to clean my bum once a day in the shower by using my feet. I have to kneel down on the ground—and I have arthritis in my knees—balance a face cloth on my heel and wipe my bum as best as I can.
3.75
The NDIA accepted that in the case described in Box 3.1 above, the agency had made a mistake and that it had taken a period of time for the agency to identify and correct that mistake.
3.76
More broadly, the NDIA accepted that many participants who requested items of assistive technology had similar experiences because its business practices had been overly cumbersome. The NDIA recognised that its poor set up for assistive technology had generated a significant number of plan reviews, noting that it was still working on clearing the backlog. The NDIA advised the committee that it has subsequently amended its business practices to ensure that items up to $1500 no longer required a quote and it was looking to increase that limit to ensure that only very expensive bespoke items require a quote.
Transport and the importance of listening to survivors
3.77
The NDIA advised the committee that reasonable and necessary supports that may be available to thalidomide survivors may include vehicle modifications and mobility and transfer equipment. However, thalidomide survivors have experienced some difficulty in trying to procure vehicles and mobility aids from the NDIS. Box 3.2 recounts the experiences of a survivor who was trying to get a replacement mobility scooter through the NDIS. The experience demonstrates that it is important for local area coordinators and officers undertaking assessments to listen to thalidomide survivors when considering what supports they need.
Box 3.2: Case study – the importance of listening to thalidomide survivors
…when I got this funding in 2015 I asked if I could get a better scooter…They said they would send out an [occupational therapist]…she said I didn't need a scooter, I needed a wheelchair. I knew I didn't need an electric wheelchair (a) because it wouldn't fit in my car (b) because a wheelchair is tight fitting around the body as such, I wouldn't have been able to lift my leg or do anything for myself, such as get stuff out of my purse or just to use my mobile. This OT went ahead and ordered an electric wheelchair which cost the government $25,000, nine months later…the wheelchair arrives and guess what? I couldn't use it and it wouldn't fit in the car…she didn't listen to me, she didn't understand my disability, hence the wheelchair was totally useless…I am the expert when it comes to what equipment or aides I need – what will and will not work for me, all because of my body and what thalidomide did to it.
3.78
The families of some thalidomide survivors have expressed great frustration with the NDIS because they do not believe that survivors are being listened to. The husband of a thalidomide survivor told the committee that, even after his wife had appeared at the hearing, the NDIA officer maintained that his wife, who has a severe upper limb malformation, needed to demonstrate the limits of her functional impairment rather than listen to her explanation of how her disability affects her.
3.79
Transport provides people with the freedom to move around in their community. Some survivors have never been able to drive, but in those cases, as noted in Chapter 2, their parents, spouses or other support people have often provided this assistance to the thalidomide survivor. In the case of thalidomide survivors who could drive, some of them have now surrendered their licences and their modified cars due to the stress that driving placed on their bodies.
3.80
In the absence of a vehicle, thalidomide survivors advised that public transport was not an adequate alternative. Thalidomide survivors noted that the lack of upper limbs or the lack of strength in their upper limbs can make catching buses dangerous. Thalidomide survivors and their family told the committee about some of the injuries that thalidomide survivors have sustained on public transport:
[The thalidomide survivor] now relies on family, friends and mobility cabs for transport. Using public transport is not an option as without arms to provide balance she has previously fallen and broken her nose while using a bus.
3.81
For this reason, some thalidomide survivors, including some survivors who made confidential submissions, asked the committee to consider a Gold Card which would help to pay for taxis to enable them to reach their destinations safely.
3.82
The NDIA advised that where a person with a disability cannot use public transport, transport funding is available.
Committee view
3.83
The committee understands that living with disability can be very expensive because of the types of additional supports that a person needs to help them. The committee recognises that the modifications to homes and vehicles have come at a substantial cost to thalidomide survivors and their families because little government support or appropriate compensation has been available.
3.84
The committee recognises the concerns that thalidomide survivors hold about the NDIS. It is important that thalidomide survivors feel that the NDIS adequately meets their needs because if they do not, they are less likely to feel secure about their futures or to engage with the scheme. The committee considers that any payment from the trust or class action should not be considered by NDIA planners to reduce the amount of support otherwise available to thalidomide survivors. The committee notes that both the ex gratia payment and the class action settlement were provided to thalidomide survivors on the basis that the sums would be exempt for the taxation and social security income tests. The committee considers that it is inconsistent if those sums are taken into account for the purposes of reducing NDIS supports, but not for other purposes. The committee understands that an amendment may be necessary to ensure consistent treatment.
3.85
The committee understands that thalidomide survivors have had frustrating experiences that have shaken their confidence in the system. The committee recognises that thalidomide survivors could procure goods and services more efficiently if they were provided with a lump sum or a substantial annual payment to help meet the substantial costs of their disability.
3.86
However, the committee notes that the NDIA says they are working to resolve those issues, including by developing a new complex disability pathway and streamlining business practices to promote obtaining assistive technology more efficiently.
Maintaining survivors' quality of life when greater assistance is required
3.87
While thalidomide survivors have set up their homes to enable them to have the greatest degree of independence possible, the committee heard that they are likely to need more support in and around the home as they age. As noted in Chapter 2, until now, survivors have largely managed with the support of their spouses, friends, family and colleagues.
3.88
Thalidomide survivors may be able to request assistance from the NDIS. One survivor advised the committee that he currently receives two hours per month for yard maintenance and six hours of domestic assistance each month through the NDIS. Another survivor told the committee that she received 20 to 23 hours of home assistance per week through the NDIS, but this is clearly not enough:
I need help with showering, dressing, shopping, cooking, cleaning, walking and feeding my dogs and cats, driving to the doctor, physio, hydrotherapy, going to the shops and everything else I've missed out on. Really, 23 hours is not enough.
3.89
A number of thalidomide survivors advised the committee that they currently pay private providers to come in and provide home assistance. Thalidomide survivors expressed concern that as they and their partners age, the range of services that they will need to pay for will increase. The concern for survivors is that they do not believe that they can continue to fund the services that they need without additional assistance.
Aged care – home care packages
3.90
Some support may be available to thalidomide survivors through the aged care system. Thalidomide survivors with complex needs may be eligible for a home care package. A home care package is 'a coordinated package of care and services' to allow a person to live independently in their own home for as long as possible. Home care packages are available to people aged 65 and over who require services to allow them to stay in their homes. Home care packages are available to certain groups of people who are under the age of 65, including people who have a disability. If eligible, thalidomide survivors may be entitled to certain forms of assistance, including:
personal services (such as bathing, toileting, dressing and undressing);
mobility and dexterity (such as walkers, pressure relieving mattresses and mechanical devices for lifting);
nursing and allied health services (such as occupational therapy or physiotherapy);
transport and personal assistance (such as assistance with shopping, visiting health practitioners and attending social activities);
aids and equipment directly associated with care needs; and
assistive technology (such as devices that support mobility, communication and personal safety).
3.91
There are four different levels of home care package to help meet different levels of care needs. However, there are costs associated with the delivery of home care packages. This includes the basic daily fee which is 17.5 per cent of the single person rate of the basic aged pension (currently $10.43 per day or $146.02 per fortnight) and an income-tested care fee depending upon the recipient's income.
Aged care – residential aged care
3.92
If thalidomide survivors are no longer able to live independently, even with assistance, they may need to consider moving into residential aged care. Even though thalidomide survivors are only aged in their early to mid-50s, some have already contemplated entering full-time care. Thalidomide survivors recognise that there are two key considerations about entering aged care: how will they pay for residential aged care and whether the aged care facility will be able to cater to their needs?
3.93
As noted in Chapter 2, thalidomide survivors acknowledge that residential aged care is expensive and because of their precarious financial position, many survivors are anxious about how they are going to pay for it. The Thalidomide Group Australia noted that 'years of reduced finances make it impossible to afford extended home care and, also limits the availability of quality aged residential care'.
3.94
There are also concerns about whether residential aged care will be able to cater for a thalidomide survivor with high needs. One thalidomide survivor with high needs explained that generally the term 'accessible accommodation' in Australia evokes perceptions of ramps into buildings and railings in bathrooms. However, she noted that she and other thalidomide survivors cannot access many features of accessible bathrooms or accessible accommodation:
I cannot even reach any Australia standardised rails – regardless of their purpose!
I cannot reach toilet paper – even in an 'accessible' bathroom;
I cannot reach into cupboards and drawers
I cannot turn on taps without lengthened tap ware;
I cannot open/close doors with rounded handles due to the limited digits (three (3)) on my one usable hand and,
I cannot reach bed lighting switches even in 'accessible accommodation.
3.95
This raised questions about who would be required to pay for such modifications if thalidomide survivors move to residential aged care before they turn 65 if it needs to be modified. The Department of Health notes that, where an NDIS participant who is under 65 years of age is in residential aged care place, the person may be eligible to receive some specialised equipment support related to their ongoing functional impairment through the NDIS.
3.96
The Department of Social Services noted at Senate Estimates that where modifications were required, the Department of Social Services would work with the Department of Health and the NDIA to ensure that NDIS participants received all of the reasonable and necessary supports available, even if this exceeded the $78 000 Aged Care Funding Instrument.
Income supports
3.97
One form of assistance available to all Australians is income support. Depending upon a person's situation, a person may be entitled to one or more payments. Most relevantly for thalidomide survivors and their families, some support is available through the Disability Support Pension, Carer Allowance and Carer Payment. However, some thalidomide survivors have experienced difficulty accessing these payments.
Disability Support Pension
3.98
Some survivors informed the committee that they had experienced difficulty in accessing the Disability Support Pension, an income support payment that is designed to support people with 'permanent physical, intellectual and/or psychiatric impairments that prevent them from engaging in employment'.
3.99
To qualify for the payment, an individual must be assessed at '20 points or more under the Tables for the assessment of work-related impairment for Disability Support Pension' and be unable to participate in 15 hours or more of work per week for at least the next two years.
3.100
One survivor who has no arms and four conditions of the heart had her application for the Disability Support Pension denied on multiple occasions. According to the survivor, despite a face-to-face interview and signing paperwork with her feet, the officer failed to record her upper limb disability and instead only assessed the application on the basis of her heart condition.
3.101
Other thalidomide survivors have also reported difficulty obtaining a Disability Support Pension, despite some experiencing some substantial disabilities including under-developed arms and internal injuries, cranial nerve damage and muscle pain, and Mobius syndrome and hearing loss.
3.102
Some people have suggested that all thalidomide survivors should be made eligible for a Disability Support Pension or an Age Pension. Mr Fletcher from Thalidomide Australia Incorporated told the committee that in 2008 the then Parliamentary Secretary to the Minister for Health and Ageing endorsed the idea at a thalidomide survivors' conference:
The senator had a handwritten speech, but after seeing us, she put it aside and spoke from the heart, discussing what should be done by her government to support Australian thalidomide survivors. This included, in her words: 'Given the issues that you are all having and the acceleration of the ageing process, you all should be getting an age pension and a disability pension now'.
3.103
Thalidomide survivors noted that this did not come to fruition and that since then the eligibility criteria for the Disability Support Pension has been tightened significantly, making it harder for thalidomide survivors (and others) to become eligible to receive the additional support.
3.104
The Department of Social Services advised the committee that the Disability Support Pension is based on functional impairment and certain financial tests. The Department of Social Services advised that a search of its electronic records did not indicate that any internal work had been done to see if thalidomide survivors could be deemed to be eligible for disability support payments. However, the Department of Social Services noted that the impacts of ageing are considered in the assessment process for the Disability Support Pension and that people who had previously applied were eligible to reapply with additional medical information.
Other forms of income support
3.105
The Department of Social Services noted in its submission that thalidomide survivors and their families may also be eligible for Newstart Allowance, Carer Payment and Carer Allowance and Commonwealth Rent Assistance.
3.106
Some thalidomide survivors informed the committee that they were currently in receipt of Newstart Allowance. However, they noted that it is difficult to fund disability supports on the funds provided. Nola, a survivor who spoke to the committee in Melbourne, told the committee that she had lost a Bone Anchored Hearing Aid that she needs to help her communicate and feels unable to replace it on Newstart:
It was only last month that I accidentally lost my [Bone Anchored Hearing Aid]…I'm on Newstart, They've given me a healthcare card not a concession card. A concessions cards [sic] will cover it but a healthcare card won't, so now I'm up for $6 ½ thousand for a brand new [Bone Anchored Hearing Aid]. Where am I going to get that kind of money from? Centrelink is not going to do anything. Medicare don't cover it. They cover other areas.
3.107
Another thalidomide survivor said she felt like she had 'fallen through the cracks in the system' when she was placed on Newstart because, despite being required to medically retire from a job she really enjoyed, she was not found to be eligible for the Disability Support Pension and had received very little compensation.
3.108
The committee did not receive any evidence to suggest that thalidomide survivors were in receipt of Commonwealth Rent Assistance.
Income support for family members
3.109
Despite the support or compensation that may have been provided to thalidomide survivors, no compensation has ever been provided to the parents or families of those survivors. Very little financial or emotional support or guidance was provided to the families of thalidomide survivors. Mr Peter Gordon, a lawyer who represented many of the thalidomide survivors told the committee:
None of the carers have been compensated. There are mums and dads and families whose lives have been wrecked—severely affected for decades…there is a need for both financial compensation and…a deep need for reparations and justice.
3.110
The parents of thalidomide survivors have received very little financial assistance. In the 1970s, before thalidomide survivors reached the age of 25, parents were given the option of either reinvesting the interest that was accruing in the trust or taking the interest to help meet costs at home. This led to a trade off because if parents elected to receive the interest, it reduced the amount that the thalidomide survivor ultimately received.
3.111
The family members of survivors advised that the only assistance they received was Carer Allowance. Whilst carers were appreciative, they noted that it did not adequately make up for what they were required to give up in order to become a full-time carer. One spouse told the committee that he calculated that the carers pension amounts to just $2.42 per hour if you divide hours by the amount of the pension and the only consolation was knowing that his wife was receiving the best possible care.
Committee view
3.112
The committee understands that thalidomide survivors are concerned about the appropriateness of aged care and their ability to pay for it. The committee understands that much of this anxiety is part of an underlying concern about thalidomide survivors' financial futures and whether they will be able to purchase the services they need to be able to manage their condition and pain and live independently with dignity.
3.113
The committee recognises that there is some support available to assist thalidomide survivors when they require additional assistance. However, given the experiences thalidomide survivors have described when dealing with mainstream services, the committee is not confident that those services will be fit for purpose when survivors need them.
3.114
The committee recognises that some thalidomide survivors have experienced difficulty in accessing income support and recognises that being able to access either a Disability Support Pension and/or an Age Pension would make a substantial difference to some thalidomide survivors' lives. The question of whether that would be sufficient to allow thalidomide survivors to live the rest of their lives independently with dignity is partly dependent upon whether the compensation that thalidomide survivors are receiving is adequate.