A round table and a sniff test

During my very limited time in New Zealand (10 days, not nearly enough) I spoke to a number of people about investigating the deaths of learning disabled people and improving their access to healthcare. I asked all of them the same question ‘who should I be speaking with to find out about academic research in this area in New Zealand’, every single one of them replied with the same answer ‘speak to Brigit at the Donald Beasley Institute’. Every one. That’s learning disabled people, disabled people’s organisations, policy makers, staff who work in advocacy or in service provision, people who are interested in research – all of them said Brigit. What a reputation.

Turns out the reputation is completely and utterly well deserved. I’d already had a look at Donald Beasley Institute’s website (some great stuff on there all related to learning disability) and had contacted Brigit when I first started planning my trip. She’d invited me to spend the day with them after the Disability Matters Conference ended. So Thursday last week I headed to DBI to meet Brigit, only to find she’d gathered a group of people who’d been at the conference to share their perspectives. So I spent the morning listening to and talking with them. Present were: Brigit Mirfin-Veitch, Director at DBI; Warren Forster, a Barrister and researcher; Jenny Conder, Senior Researcher at DBI; Patsie Frawley, Senior Lecturer on Disability and Inclusion at Deakin University; Kelley Johnson, Honorary Professor at Deakin University; Paul Milner, Senior Researcher at DBI; and Paul Gibson, Inaugural Disability Rights Commissioner at the New Zealand Human Rights Commission.

I took notes of our discussion but will pull out some of the themes of what we covered. Perhaps unsurprisingly a lot of it built on conversations that had taken place at the conference. We touched on the interface of choice and control in learning disability with a psychiatry dominant medical model and the role of risk and risk aversion and the impact of that sometimes being providers pulling out of providing any service (it goes without saying that families don’t get the option to withdraw support when the risk is too high or the budget returns too low). Patsie and Kelley work in Australia and were reflecting on the role of the Ombudsman in Victoria and how it wasn’t until someone outside the system stepped in, that physical abuse of people with a learning disability was really addressed (see this and this for more). This fits into thoughts I’ve been having about ‘going native’ and accepting or just not seeing what is in the environment once you become familiar with it – without doubt one of the huge benefits of travelling to Australia and New Zealand, and I guess WCMT fellowships more generally, is that you see things with completely new eyes. I have found myself asking questions that have surprised people, perhaps because I don’t know enough to ‘guess’ the answers myself (or perhaps because I am challenging behaviour).

Paul G spoke about horizontal integrity systems and who is providing oversight, insight and safeguarding. This ties into the Community Visitors scheme I referenced in a post at the start of my trip, In New Zealand an example was given of families in Otago insisting on an individual advocate for each of their family members when they were moved out of long stay institutions. Every single incident report had to be shared with the advocate, so in a sense someone had oversight of what was going on. This arrangement was stopped when the Health and Disability Commissioner process was established. The HDC process is a complaints driven process, so a disabled person or their family member has to make a complaint, for anything to happen. Interestingly when I spoke with the Disability Commissioner at the HDC last week she told me that of about 2000 complaints annually, only 100 would relate to disability. That makes disability about 5% of their focus. This seems low to me, although similarly reflected in people’s experiences shared at the conference, where they spoke of a reticence or fear to complain.

Other topics we touched on included research conducted into Kimberley (the last long stay institution in New Zealand to close) which showed that increases in quality of life for people had little or nothing to do with the services that they received and was closely correlated to their proximity to family. A discussion followed about Section 141 of the Children, Young Persons and their Families (Oranga Tamariki) Legislation Act that forces families to give up their children into services, to access any support, and consequently leads to families unable to get their children home from services and often being separated by great geographical distances (sound familiar? If not this on Neary v Hillingdon summarises the state of things in the UK quite well and the epic lengths families have to go to get relatives home in such situations).

The other, related, discussion that was had a bit was about Māori culture, which I attempted to touch on in my conference write up too. Warren and Paul G explained that Māori ontology includes that you never meet or engage with me alone, always engage with my cluster, you should always ask who and where I’m from. This runs so counter to a service dominant, personalised individualised ‘hermetically sealed’ (I stole that one from Paul Gibson) culture of service provision. This is such an important point, as long as we keep stripping individual’s down to an assessment of their individual needs, and not viewing them as whole people, as part of whole communities, then we’re never going to be able to grow communities and support people to have meaningful lives within them.

Paul M pointed out how quickly conversations shift to discussing what services want to need, and move on from what tools families need. It is crystal clear that for this to work well then the only place to start is to get to really know me as a person. On a positive note Paul G talked about plans for an online health passport app that would introduce a person, perhaps by video, that says this is me, this me when I’m well, this is my family. It is critical that people get to know something of the person when they’re at their best, and it would also help with shared decision making. It’s early days but my money is on Paul making this happen, and he’s already talking about linking it to medical record systems without a bypass option, so the health professional would need to watch it before they could move on with whatever they’re doing. A real life medical history, not just a paper based professionally dominant narrative.

After a couple hours of brilliant contextual discussions about current, past and future thinking, I had to leave for my second meeting of the day, before returning and talking one to one with Brigit later on. My middle meeting was with David Crerar. David was the coroner in Dunedin for 36 years, retiring last year. He explained the coronial system in New Zealand, recent changes to water down the law around inquests (against his better judgement) and the role of the Police in conducting investigations on behalf of the coroner. When we discussed deaths of disabled people he felt ‘sure that there is under-reporting of deaths to New Zealand coroners’. We discussed autopsies and how some families don’t want them, and how often families don’t want the fuss of an investigations especially when a relative is an older person in care. Despite this David did point out that often when coroners looked in-depth there would be clear lapses of care, but whether an inquest happens is up to a coroner’s judgement and different coroners will make different decisions, even if it’s a close call.

David explained that most coroner’s in New Zealand have been in post for ten years or more, there are only 16 coroners in the whole of New Zealand in 9 regional centres. David talked about something he called ‘the sniff test’. An experienced coroner could smell or detect when something was going on, or something was amiss. These decisions would often be peer reviewed by another coroner and they would have a feeling if something was not right, for example a number of deaths under similar circumstances. In this situation they’d draw those to the attention of the Police. I asked David how we could influence coroners to hone their sniff test skills when it came to disabled people, especially learning disabled people who are routinely dying prematurely. His response was that it should be possible, and he offered the example of cot death. Concerns amongst New Zealand coroners in relation to high levels of cot deaths, led to the introduction of a Sudden Infant Deaths Syndrome investigator who works on these cases. Maybe we need a Disability Death Investigator?

We also discussed deaths of disabled people in more detail, coroners recommendations and therapeutic jurisprudence. David was keen to point out that all coroners should be guided by family concerns ‘they know more about the case than we, or the Police, do… an astute family are very good leads to investigations and are good investigators’. Aint that the truth.

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