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Tag Archives: medical anthropology

Red flag waving: Medical crowdfunding trends show the precarity of kiwis in Australia is not just a Covid-19 issue

Written by Laura Starling and Susan Wardell

Covid-19 has put an enormous strain on New Zealanders living in Australia, with the Australian government being slow to extend any sort of benefit when lockdowns began in March this year. But the precarity of this group is far from new.

New research on health crowdfunding highlights how wrong things can go, with dozens of families findings themselves reliant on the whims of ‘the crowd’ to support them through dire medical situations, when the state refuses to take responsibility.

Life, death, and the crowd

Donation-based online crowdfunding is an increasingly common way for individuals and families to seek help for various types of need. Health-related crowdfunding is the largest sector of the international platform GoFundMe (which has 80% of the global market share, and takes a tidy percent of all donations) as well as having a major presence on New Zealand’s own non-profit platform Givealittle.

New Marsden-funded research led by Dr Susan Wardell, at the University of Otago, has analysed 574 active campaigns by kiwis both within NZ and overseas, across both platforms, in order to understand who is turning to this means of support, and why. The study found a subset of 44 campaigns were created by Kiwis living in Australia.

Internationally, higher rates of crowdfunding appear in places with weaker formal safety nets; including healthcare coverage, insurance, or social security. Because of this, research into crowdfunding can reveal wider structural inequalities, and in this case the life-or-death implications of questions around benefit eligibility, and citizenship rights, for those who look for a ‘better life’ in Australia.

A better life

The stories and outcomes of the health crowdfunding campaigns in this study, were documented in June 2020 – at the end of New Zealand’s lockdown, but amidst Australia’s ongoing regional restrictions. However, most campaigns pre-dated the pandemic; which is telling in itself

72% of the donation recipients were adults and 28% were children. These are people who experiencing brain tumours, various cancers, heart disease, spinal injuries, spinal injuries, among other issues. The overwhelming majority (77%) were fundraising due to illness, with a handful fundraising due to injuries (9%) or disabilities (7%), and the remaining few campaigns categorised as elective, fertility-related, or mental illness-related. Most campaigns are organised by family members, partners, or friends, rather than the ill person themselves.

Most asked for money to cover direct medical costs, such as hospital care, outpatient medical and diagnostic services, pharmaceuticals, medical or mobility equipment, rehabilitative care and so on.

However, 34% of them also specified the need for help in meeting general living costs, such as household bills, childcare, and transport during times of illness; factors that all have flow on affects for physical health as well. This was much higher than the number of New Zealanders based in New Zealand, who were also crowdfunding, with less than 24% of these requesting help with general living costs.

Many of the people writing these campaigns shared similar stories – of jumping the ditch in search of a ‘better life’. But this may be true only while the going is good, with higher wages not always enough to compensate for unexpected illness or for the support of dependents, no matter how long the wage-earner had been living, working, and paying tax in Australia.

The lack of access to healthcare and social support, was explicitly stated in two thirds of the campaigns, as the reason for their need:

“I cannot claim Centrelink, I have tried multiple times and they have declined me every time.” (campaign 450)

 

“**** is a New Zealand Citizen and although he has spent most of his schooling and working life in Australia, he is not entitled to any form of financial help.” (campaign 443)

Multiple cases mentioned working and paying taxes in Australia long term and still not being able to access meaningful supports. For example, while one family had “lived and worked” in Australia for eight years, they were unable to access any social welfare when the father was diagnosed with a brain tumour. Another campaign tells the story of a terminally ill man residing in Australia for 18 years but still has no access to support. In the campaign his family states he is not “allowed” to become a citizen now because of his diagnosis, but also that is unable to return to New Zealand for treatment because supports are no longer available to him after living in Australia for such a long time.

Citizenship struggles

In 2001 policy changes implemented in Australia saw that New Zealanders living there would stay on an indefinite visa, rather than gaining citizenship. While New Zealanders have access to emergency care under this system, any long term and ongoing treatments are not covered. This includes doctors visit and pharmaceuticals. It also limits access to welfare and social support.

Pathways for Kiwis to become an Australian citizen are complicated. It can take up to 12 years of permanent residence in Australia to access the same supports immigrants from elsewhere in the world may receive after only four years, as Kiwis are the only group unable to apply for citizenship after four years. Kiwis are able to stay on a permanent visa in Australia, but this means they can never access the supports they contribute to through taxes.

Furthermore, marriage to an Australian citizen does not grant citizenship and the subsequent benefits of affordable healthcare and social support. Those married to Australian citizens still were unable to access welfare and health care assistance, while living in Australia with their partner (even if they were working themselves). This means that individuals are faced with potentially uplifting their lives back to New Zealand to receive the treatment needed, even though their lives are embedded in Australia.

Children and families

Though crowdfunding presents individual stories, designed for public attention, very few are about individuals alone. Family members are more than not implicated in the difficult sets of laws around citizenship and welfare access.

Children born in Australia to New Zealand citizens must reside in Australia for 10 years before they are citizens. This means they are ineligible for supports. For kiwi families living and working in Australia, whose young children have medical needs, this rule can have severe impacts. For example, one campaign was for an 18month old child with a serious neuromuscular disorder, who was born in Australia, to parents who are New Zealand citizens. Though he is eligible for “life-saving treatment” through the government, they explain he needs further help for costs he is not eligible for help with, including the therapies, and equipment, that might enable him to one day crawl or walk.

Crowdfunding campaigns typically involve narratives crafted to present ‘deserving’ individuals as worthy recipients of donations. Overseas studies have shown this typically takes the attention away from systemic issues. The campaigns we studied were atypical in that, to explain their situation and justify asking for help, they often went into detail about the systems they were caught within:

 “Both myself and **** are New Zealand citizens (living in Australia for 9+ years now) so even though **** was born here in Australia, because we are not Australian citizens, nor can we apply to be due to the citizenship laws being changed in 2001, we are not entitled to any funding, respite,  careers benefits, disability grants, NDIS and many more things. This makes our financial situation a real struggle.” (campaign 522)

 

“****’s parents, who moved from New Zealand in 2007, are considered Australian residents for tax purposes and are required the pay the increased levy to fund the scheme but can’t access it for ****’s disability supports and interventions. **** will become an Australian Citizen in 2021 when he reaches 10 years of age.” (campaign 548)

Both these examples reflect the fact that if parents of a child are New Zealand citizens, even if the child was born in Australia, they still do not have access to supports and affordable healthcare for that child. This is in stark contrast to what Australians living in New Zealand receive. It shows the high degree of awareness of the campaigners to the systems they are caught within, but have no opportunity to change or contest.

Unequal exchange

The benefits extended to New Zealanders living in Australia are vastly less than those that apply to Australians living in New Zealand. This has been the focus of an ongoing campaign by Oz Kiwi, a small team of volunteers governed by a committee, whose purpose is “campaigning for the fair treatment of New Zealanders living in Australia”. They provide the following, striking graph about the disparities…

Figure 1: ‘Rights comparison’, from the OzKiwi fact sheet, October 2016. http://www.ozkiwi2001.org/2016/05/oz-kiwi-factsheet/

In 2017, in response to census data researchers also pointed to inequality and discrimination against New Zealanders living in Australia. They also suggested that these measures appear to be specifically targeting Māori and Pasifika immigrants, with less than 3% of immigrants from New Zealand who take up citizenship being Māori. OzKiwi also suggestion that single mothers are disproportionately affected by this process.

Covid19 has brought the inequalities to media attention in new ways. In March New Zealand Prime Minister Jacinda Ardern had to publicly and repeatedly request that the Australian Government provide supports for the Kiwis stuck in Australia during the pandemic – and struggling with job losses, and subsequent loss of incomes – in the same way that New Zealand was providing care for Australian citizens stuck in New Zealand. The eligibility of Kiwis for the Australian ‘Jobkeeper’ benefit scheme was eventually agreed. But with the scheme expiring several weeks ago, it is a better time than ever to recognise that the problem is bigger and deeper than this.

Red flag waving

Data on crowdfunding from both before and during Covid19 confirms that kiwis who seek financial assistance from online publics, while living in Australia, are overwhelmingly doing so because they have limited access to formal social supports.

Is it right that they should have to do so?

Crowdfunding is ultimately an unreliable form of meeting what are sometimes life-or-death needs –  shown in much existing data to fail to reach its financial goals more often than not. It is a gap-stop at best, and at worst, a red flag waving from the ditch people have fallen into, between Australia and New Zealand, and the safety nets designed not to catch them.