Last week started in Brisbane and I flew back to Melbourne on Wednesday. Wednesday evening I met John Chesterman, Director of Strategy and currently Acting Advocate, at the Victorian Office of the Public Advocate. John was one of the first people I contacted when planning my WCMT travels as he himself is a former Australian Fellow who travelled to the UK, USA and Canada to look at abuse, exploitation and neglect of at-risk adults. You can read John’s report here. He kindly agreed to meet with me very early on and pointed me in the direction of several other people.

During our meeting John explained the work of the Public Advocate’s office, we discussed the Community Visitors Scheme, there are 800 volunteers involved and John was one before working there (and still is). We also touched on the role of the Disability Services Commissioner and his team who have new powers to investigate death in care. Prior to these powers John felt that there was a significant gap in Victoria, we also discussed the areas of grey in coronial investigations and the ever present question about whether the death of someone with a disability is unexplained, or just part of their life trajectory. We also touched on the roll out of NDIS and whether certain people are at higher risk as a result of the new scheme, lot’s of the people who are involved with the OPA do not have ‘natural supports’ (which several people have told me is an NDIS code word for cost cutting). The other thing we discussed was advocacy organisations and what a strong history they have, and a good job they do. John pointed out that:

they’re straining to meet demand, funding is not all that clear and it is under threat… it is clear that demand will increase due to NDIS and the pull on individual advocacy at the moment is huge. It is also clear that demand will be outstripping advocacy availability in the future.

I’ve been very impressed with the strength of advocacy in Australia in particular and it would be a real loss if the funding required to provide it is not secured. It is screamingly obvious those at most risk will face even greater challenges and without advocacy organisations campaigning to improve access to healthcare for learning disabled people, then it’s not too much of a leap to imagining even more premature and preventable deaths will occur.

Thursday started with a meeting with Mark and Siobhan who work in the team responsible for systemic and individual child death inquiries at the Commission for Children and Young People. They’d been given my details by the team at the Disability Commissioners Office who I met last time when I was in Melbourne. I had explained to them that I know little of the detail when it comes to Child Death Overviews but that I was very happy to meet and discuss anything of interest to them. They talked me through their processes, the move towards being more strategic in their approach and their plans moving forward. We discussed the engagement that they currently have with families, where they fit in the process (especially because a number of the families who they deal with are likely to have disabilities themselves, and all have been engaged with child protection services in some way), and what things they might consider if they’d not done so already. Like so many of these processes they are heavily reliant on records and documents kept by those in the system, and if intentional effort is not made to actively include families and ask for their input, then the perspective gathered will only ever be partial.

After coffee I headed down to the Melbourne Coroners Court to meet Mick and Ashne. Mick is the manager of the Coroner’s Prevention Unit and Ashne is the first (and from what I’ve found to date only) Disability Death Review Case Investigating Officer in the coronial system (if you know of others please get in touch). The CPU is such a brilliant model, it takes a systemic look at all deaths that are reported to the Coroners Office, they have developed and use databases for the 6-6.5k deaths that are processed through the Coroner’s Court annually. Some of these databases have been used since 2000 and so the data that they have to draw on is substantial. Mick and Ashne were able to give examples of where the data gathered and work conducted by the CPU team not only helped individual Coroners to make evidence-informed decisions (which is novel in its own right) but that they’d also been able to use the data they collect to lobby and make changes and improvement to policy and law. The examples they gave related to a real-time monitoring of prescriptions (to reduce and prevent the success of ‘doctor shopping’ behaviour), the introduction of heroine safe injecting spaces and facilities, feeding into family violence work and also into the government’s suicide plan and strategy. The only disappointing news (and it is hugely disappointing) is that Ashne’s post is only funded for two years until the NDIS is rolled out and then the assumption is that the work will be rolled into the Safeguarding Commission (alongside the work of the team in the Disability Commissioner’s Office). I’ll be watching closely to see what they manage to achieve in such a short timescale, I feel sure they will achieve, but I’m very anxious that much of what I’ve been so impressed with will be lost.

My next meeting was a handful of steps away at VIFM – the Victorian Institute of Forensic Medicine. I had arranged to meet with Professor Joe Ibrahim who has done brilliant work on deaths in elder care. I also had the opportunity to hear from David Ranson, Deputy Director of VIFM and to talk with A/Prof Lyndal Bugeja who was pivotal in establishing the Coroners Prevention Unit. It was great to meet people who were so committed to their work, to conducting high quality death investigations, to research and to influencing and improving policy. Talking with Joe was like sitting with some sort of thought guru, he just spoke such sense. The thing that stuck with me the most, because it’s the truth, much as I might like not believe it is that:

Things are done poorly. No-one seems to care. No-one seems to care that no-one cares.

People want good news and they really struggle with things that are affronting.

We covered off challenges of funding, of people’s suspicions around people working in this area (deaths in elder care in Joe’s case), and the significant vicarious trauma caused to young researchers. As Joe pointed out to really get good data you need to delve into a case and get the detail, often you’re left asking how is it possible that this occurs. We also discussed the challenges associated with accessing data and using it for research, health legislation in Victoria was written with no regard for potential use of data for public health or research, so Joe’s team use coronial data because often that is the only data that they can get hold of. Joe has also looked at injury data in his research and that is ‘by definition preventable and premature’ but he still hasn’t yet won the argument that it matters. It felt like there were many parallels to deaths of people in elder care and deaths of people with a learning disability.

My final Melbourne meeting took place over breakfast on Saturday. I was so chuffed that it was able to take place and very grateful that Alastair McEwin, the Disability Discrimination Commissioner at the Australian Human Rights Commission found the time to meet me (our initial plan had to change and we were going to go for a Skype call but a face to face was brilliant). The conversation with Alastair was wide ranging and very informative, we started off discussing my background, why I was in Australia and some of my very early days researching special education. We discussed the priorities for disabled people (Alastair has been travelling the country and asking people what their issues are – his focus areas are here), the role of families in people’s lives (when it works well and some of the challenges when it doesn’t), the role of care providers in people’s lives (when it works well and some of the challenges when it doesn’t) and some of the challenges of Alastair’s role (he is a federal office holder but nearly all his portfolio is held by people working at State or Territories level). We also discussed what I’ve heard so far, some of the good stuff from my initial analysis (advocacy, NSW Ombo process, Victoria’s death investigation process) and some of my fears about the faith people seem to be putting in NDIS (it isn’t going to be the panacea people are hoping for – not for everyone – we know this from the UK). Alastair was very aware of the challenges and agreed on many of the concerns, the remit and scope of the NDIS safeguarding commission is going to be absolutely critical, not least because NDIS will only fund 10% of disabled people in Australia, so safeguards need to be in place for the other 90%.

Without a prolonged and sustained focus on healthcare access for learning disabled people and proper investigation of their deaths when they occur, to return full circle to my meeting with John, we know that preventable deaths will continue to happen and that we will fail to improve care. We can not accept that. We have to care. If we won’t, who will?