At a Waitangi Tribunal hearing this week, the spotlight is on how tāngata whaiakaha Māori are faring in our public health system. Bernadette Jones explains what’s ahead – and what disability advocates are hoping for.

This week is a landmark for many tāngata whaiakaha Māori, as on Monday, the Waitangi Tribunal started hearing a set of claims around disability as part of stage two of its Kaupapa Inquiry into Health Services and Outcomes. There are few places where tāngata whaiakaha Māori (a term referring to Māori with lived experience of disability – another term is whānau haua) can raise concerns and put a spotlight on the issues of poor health services, inadequate disability supports and a lack of funding and investment in disability, which is why this hearing is so important.

This week is the first of around six, spread out between now and June, where claimants and expert witnesses will present their views to the tribunal, and after that we will hear from the Crown. While the issues around disability itself are broad, the tribunal is keeping the focus on health and disability support services, most of which have been the domain of the Ministry of Health and district health boards, although with the creation of a Ministry for Disabled People on July 1, some of that is about to change. 

The first day of the Waitangi Tribunal hearing was focused primarily on a claim, by David Ratu, on foetal alcohol spectrum disorder, or FASD. The evidence, which ranged from the lived experience of whānau to the views of the disability commissioner and those of experts in FASD, painted a picture of a condition that has been allowed to flourish because of a lack of public health controls on alcohol, by a lack of good-quality maternity services for wāhine Māori, and a lack of social and health sector supports for people with FASD. 

There were also significant concerns raised about the criteria set by the Ministry of Health for whānau seeking funded disability supports. In the case of FASD this is connected to the use of “IQ” as a criterion, which we know to be culturally inappropriate. Although the specifics are different for each impairment type, this concern about disability support services being bureaucratic and inappropriate is unfortunately common. 

Another issue raised in the context of FASD, but shared by many of the claimants, is the lack of a prevalence study that would help us know how many people and whānau are affected so services can be designed appropriately. 

Disability is extremely common worldwide, and will touch most people or their whānau at some point in their lives. In Aotearoa 24% of the population self-report as disabled, but age-adjusted figures for Māori are 32%. But the truth is we don’t exactly know what is happening for Māori, because we don’t have reliable data about disability in Aotearoa, nor is our ethnicity data as good as it could be. 

This lack of robust statistics around tāngata whaikaha Māori could be a sign that successive governments haven’t valued knowing about us, and it strongly suggests that ministers have not been able to hold themselves or their agencies to account for ensuring equity for us. Whatever the reasons behind how we got here, it runs counter to the obligations under te Tiriti o Waitangi, the United Nations Convention on the Rights of Persons with Disability (UNCRPD) and the United Nations Declaration on the Rights of Indigenous Peoples. 

Changing this is something my research team at University of Otago, Wellington are driven by with our Te Ao Mārama Māori disability study. By running a national survey, this research aims to develop culturally appropriate approaches to quantify the prevalence of “disability” among Māori and its impacts on health, wellbeing, social inclusion and costs for tāngata whaikaha. We are grateful to Health Research Council funding for this mahi, and we know it is much needed – it is understandable that so many of the claimants are sharing frustrations that this hasn’t been done already by governments. 

Over the remainder of this week the tribunal is set to hear from two other sets of claimant witnesses (one highlighting whānau experiences, the other looking at ACC funding of Māori provider services) and the authors of one of the reports commissioned by the tribunal. Across these witnesses, and others over the course of the next few months, I expect we will also hear more about the experience of tāngata whaikaha during Covid-19.  

Last week, the disability rights commissioner made her concerns around this clear by launching an inquiry using powers under the Human Rights Act, initially looking at omicron. I expect as part of this, and indeed the Waitangi Tribunal’s inquiry, the current Ministry of Health/DHB/ACC policy of limiting access to essential in-home services and asking tāngata whaikaha to draw on whānau and their own supports during the Covid response will come under scrutiny. These policy responses are flawed because they were (once again) developed without involvement of disabled people and are likely to cause harm by significantly disrupting home care supports for those most “at risk” in this population. This type of response is violating the rights of disabled people to dignity, independence and adequate fulfilment of needs, under human rights law and the UNCRPD, and fails to safeguard tāngata whaikaha Māori and the wider disability community during the Covid-19 pandemic. 

This is the second stage of the inquiry, known as Wai 2575, which started with a look at primary care and has already been incredibly influential in changing the way the government talks about the principles of te Tiriti o Waitangi, as well as spurring the creation of the Māori Health Authority. It is still very early in hearing the tāngata whaikaha claims, but in addition to giving a stage for disability issues, I know many of us hope it leads to meaningful change, ensure equitable outcomes and put greater emphasis hearing from those with lived experience of disability. 

Gabrielle Baker also contributed to this piece.

Bernadette Jones (Ngā Wairiki, Ngāti Apa) is a senior research fellow at the University of Otago, and director of the Foundation for Equity and Research NZ, specialising in Māori health and disability equity.