Day 11 #WCMTLD and it was an early start and a bus ride up to La Trobe’s Bundoora campus for a 9am coffee with Professor Chris Bigby. Chris is the Director of the Living with Disability Research Centre. A unit committed to not just conducting good quality research, but also to translating and applying that to improving the lives of people with an intellectual disability.
Our conversation was quite wide ranging, which was super useful for me. We discussed supported decision making, the complexity of it and the challenges to families and staff to supporting a person with an intellectual disability to make decisions that are right for them. Chris was keen to point out that there are no easy answers, indeed she was quite frank about some of the challenges of ‘solutions’ that we’ve seen sold to families and the sector as the panacea to all ills, or certainly as a huge step towards resolving things. A lot of these are based on purely ideological ideas, the sort that look good on paper, but when it comes to applying them in principle things get a lot trickier and we don’t currently have a very detailed understanding of what good actually looks like.
We discussed policy initiatives in the UK and Australia, and what seems to make policy makers or politicians tick (often personalities and promises, as much as sound evidence). We discussed the interface between families and service providers and the unhelpful characterisations of both sides, and the lack of quality research or practice frameworks around working with families of an adult with an intellectual disability. We covered off circles of support, I think it’s fair to say neither Chris or I are a big fan, and discussed some of the changes towards personalisation in the UK and the pending changes to the NDIS (National Disability Insurance Scheme) here in Australia.
Chris also told me about some research she has been doing into the experience of people with intellectual disability when they are in hospital. This has been conducted in three hospitals over three years, the research has used observations, auditing and interviews and the work is currently being written up. They identified 60 people and asked them about their experience of the hospital encounter. It sounds like there will be headline messages about what information is required and who is best placed to give, or ascertain that and something about the relationship between nurses and support workers. Chris suggested that the experience in the Emergency Department was not particularly problematic for people with intellectual disabilities and the medical staff were engaged in a process of continuous adjustment.
When I mentioned some of the coroner’s findings that I’d read that suggested otherwise, such as that of Shona Hookey in NSW, Chris made two very useful observations. The first, that ‘those in power don’t not want to listen to families or support workers, they don’t understand why they should listen to them’ at one level makes my head want to melt. Why don’t they understand? If the person with intellectual disability isn’t able to communicate in a way the medical staff understand (due to pain, or their communication style), why wouldn’t anyone’s default position then be not just to listen to the person who knows that person best, but to actively seek their input? At another level if medical staff really do not know that they should listen/seek that info, then I guess we might need to focus on that issue if we want to improve things. Chris’ second point was to highlight the work of Dr Jane Tracy at the Centre for Developmental Disability Health. The centre works with medical students and mainstream health services to improve their capacity to address the health needs of people with an intellectual disability.
The take home message from our discussions was how hard it is to get things right. That we need good skilled staff, and alongside them good practice leadership. We also need to value support and care workers, an argument also often made in the UK. Can we honestly expect workers who may be low skilled, not valued and poorly paid to provide highly skilled, life enhancing care and support – it does happen, but we don’t help ourselves or create the conditions to ensure that it happens.
Chris’ parting shot was to remind me that we have to have good services to enable us to understand what good look like, and because we don’t have many good services, its hard to learn from them. However where we have good, we should be using ethnographic research to get up close and personal with them and really unpack what it is that makes them special.
After my meeting with Chris I hopped back on the bus and headed down to Melbourne Law School, having been invited by Anna Arstein-Kerslake to give a talk to the students in their Disability Human Rights Clinic. The students, all postgraduate law students, work on issues relating to disability and human rights over the course of 12 days of clinical work. I was asked to talk to them about #JusticeforLB and issues relating to the law, the title for my talk ‘A breach of human rights’ was a quote from LB, that Tom regales at the start of The Tale of Laughing Boy:
I talked to the students about the range of legal actions and processes that have taken place since LB died. I also highlighted some of the despicable behaviour that members of the legal profession have engaged in, such as the cross examination of Sara at LB’s inquest, and more recently the GMC tribunal. I was also able to share some of the joy of the #JusticeforLB campaign and highlight the work of LB’s brilliant legal team: Charlotte Haworth-Hird, Caoilfhionn Gallagher and Paul Bowen. We also discussed the power of social media, the LB Bill, the brilliance of people, Sara’s book and the importance of always standing up for people’s human rights. Something I hope they’ll take forward in their careers.