Step up to partnership before deciding how the disability part of the health reforms will look

Tāngata whaikaha are uniquely under-served by our current health system. Intersectionality helps give context

So much has happened in the health and disability sector, it is almost impossible to keep up with all the Government’s decisions.

A large volume of analysis has emerged in response, and I’ve added my bit – for example, on the System Fix podcast hosted by New Zealand Doctor Rata Aotearoa. And there has probably been a bit of jockeying for position too.

The Government has delayed any decisions on “disability governance” until September, so the focus has been on its promised major structural changes, such as dismantling the DHBs and creating a Māori Health Authority.

But, building on the theme I raised last month in my column, it is not known how the partnership with Māori, including Māori with lived experience of disability, will be honoured in shaping how our system works.

Holding off on the disability decisions makes sense. The Health and Disability System Review Panel’s interim report canvassed a number of issues for people with lived experience of disability. The final report, however, as with Māori health issues, didn’t quite do justice to these issues.

Any health system that is aimed at being pro-equity must grapple with (and eliminate) its ableism, which includes (as a minimum) making sure it’s providing high quality, accessible and appropriate health services to people with lived experi­ence of disability.

As health minister Andrew Little alluded to when announcing the reforms, it’s rare that information on disability is even routinely collected within health services.

This makes it hard to know if the minimum is even being met.

For tāngata whaikaha, Māori with lived experience of disability, the health system’s failure to achieve equitable Māori health outcomes is compounded by its issues in meeting the health needs of people with lived experience of disability.

As a result, tāngata whaikaha are uniquely under-served by our current health system.

Intersectionality helps give context to some of this. Intersectionality provides a way of looking at the way power relations such as race, class, gender and ableism build on each other and work together.

Thinking about intersectionality needs to be built into both the development of the (pending) disability-focused decisions and the way the health reforms already decided upon are implemented.

Bernadette Jones, Paula King, Tristram Ingham and I recently had an article published in which we look at intersectionality and equity for tāngata whaikaha in the context of COVID-19.¹ We were prompted particularly by concern about unethical algorithms, such as intensive-care triage tools.

Having since seen the Govern­ment’s system transformation decisions, I find the conclusions in that article are relevant beyond COVID-19 and might be a good guide for future decisions more broadly. We were informed by US academic Camara Jones, whose “gardener’s tale” and other thinking has shaped much of our understanding of racism in Aotearoa (Newsweek, 7 April 2020).

We adopted the idea of needing a moral and political compass to navigate the uncertainty within the health and disability sector. The compass has four elements, which apply to the health and disability system changes as much as they do to COVID-19:

• guaranteeing self-determina­tion for tāngata whaikaha
• addressing all forms of racism, ableism and other structural forms of oppression
• rectifying historical injustices, including those associated with colonisation
• allocating resources for the COVID-19 pandemic and beyond, according to need.

This compass might also be useful in thinking through the large body of evidence that Māori claimants will be compiling for stage two of Wai 2575 – the Waitangi Tribunal’s Kaupapa Inquiry into Health Services and Outcomes.

Hearings in this stage of the inquiry, focused on disability issues, are scheduled to start at the end of the year and have the potential to be just as impactful as the primary healthcare claims.

These first brought the idea of a Māori Health Authority into relatively widespread discussion, to the point of being adopted – in some form – by the Government.

In coming months, as the Govern­ment looks at disability governance more closely and the other decisions are implemented to try to transform the health and disability system, a Te Tiriti o Waitangi-centred and intersectional approach will see tānga­ta whaikaha as partners in designing and implementing changes.

The alternatives are something less than partnership, or approaches that treat Māori as homogenous or address disability issues without an intersectional lens, and will likely get us more of the same.

If there is one thing we have heard consistently over the past weeks, it is that most people think more of the same will get us nowhere.

Gabrielle Baker (Ngāpuhi, Ngāti Kuri) is an independent health policy consultant