My first day in New Zealand today and it’s been great for setting the context. First up I met with Esther Woodbury from the Disabled Persons Assembly New Zealand followed by Cindy Johns from People First New Zealand (who I forgot to photo).

Both disabled people’s organisations form part of the coalition of DPOs who have worked with government to co-create the New Zealand Disability Action Plan 2014-18. The plan focuses on the action required to achieve four shared results for all disabled people:

1. Increase employment and economic opportunities
2. Transform the disability support system
3. Ensure personal safety
4. Promote access in the community

The fourth outcome encompasses a priority aim 9c: Increase access to health services and improve health outcomes for disabled people with a specific focus on people with learning/intellectual disabilities.  Lead: Ministry of Health.

Esther and Cindy were able to fill me in on some of the background and context of advocacy around the health of people with intellectual disabilities in New Zealand, and some of the broader contextual information such as an overview of the ACC scheme. One of the interesting things they told me about was the comprehensive screening of athletes at the Special Olympics. The Healthy Athletes Screening Programme offers comprehensive assessment and treatment to all athletes and covers a focus on sight, teeth, hearing, feet and mobility/general health. The next screening will take place at the Special Olympics New Zealand Summer Games, which take place in Wellington next week.

Another theme that came up in my conversation with both Esther and Cindy, is how do you know what you don’t know. Also how do you move forward in improving things and ensure that you don’t get caught in a trap of highlighting the problem. Cindy said this:

We need to look backwards to go forwards

Which struck me as quite pertinent, enough for me to scribble it down as a direct quote. I’d heard something similar on a documentary I watched on the flight over last night, Ever the Land, where the notion of walking backwards into the future was raised. You need to look back, to see what you need to know and what you need to learn. Later today I saw this again, when wandering around Te Papa, the national museum on the waterfront in Wellington.

This notion of needing to know is one that is troubling me at the moment. The systems in Australia have impressed me, the register of all deaths, the mandatory investigations into reportable deaths. Yet all of these systems still require you to a) know a death occurred in care and b) to then investigate it. I can never shake the findings of the Mazars review far from my mind, less than 1% of deaths of learning disabled people investigated at Southern Health. Less than 1%.

I was discussing the Mazars findings with Esther and she suggested it was possible in New Zealand that investigations only happen when there is a lot of work/advocacy/campaigning by families. You don’t know what you don’t know. This was something I discussed this afternoon on a call with Rose Wall, the Deputy Commissioner, Disability at the Health and Disability Commissioner’s Office of New Zealand.

Rose talked me through their systems and processes of investigating deaths. She highlighted three cases that the commission had investigated of deaths in care, all young men. They only receive a relatively modest number of complaints, of approximately 2000 complaints annually into the Commission, only about 100 would relate to disability services. Rose shared that there aren’t many, or there aren’t a lot, of unanticipated or unexplained deaths. Those that were would be referred to the Coroner to investigate. I asked Rose how she, or the commission, could be sure that there aren’t many and shared the Mazars example again. I can’t say I was left convinced that they would know. How do you know what you don’t know? A perennial question, but one that really needs an answer.

After my call with Rose I spent an hour in the museum before meeting up with Neil Ballantyne for dinner. A great evening’s company and food, and a lovely way to round off Day One in Aotearoa.