YVETTE MAKER: Hello, Again, Everyone, I Think We'll Get Started. This Afternoon We Have

YVETTE MAKER: Hello, again, everyone, I think we'll get started. This afternoon we have two final panel discussions. And they're focused the first one on disability research issues and priorities for the issue. And it's a panel of four individuals, who are either partially, or wholly external to the university. Intentionally to get that contribution both internally and externally into what the difference research issues are and where we should be aiming our future targets.

The second panel will be stimulating and supporting disability research here at the University of Melbourne, and we'll hear mostly from internal speakers there. Now I'm just going to go ahead and hand over to Yvette Maker, who will chair this secondtolast panel. Yvette diligently prepared mini bios for everyone today except herself, so I will give Yvette' bio. Yvette has been a research fellow with the Disability Research Initiative for two years now helping out both in the Disability Human Rights Clinic and on research projects and on organisation of both the international network and several different, more local, domestic projects. She also stepped in amazingly last year when I was on leave and really carried a lot of the activities of the Disability Research Initiative, for which I will be forever grateful, and I think we can all be grateful for, because a lot of this wouldn't have been possible a lot of it we talked about today wouldn't be possible if Yvette hadn't really taken a wonderful leadership role. She also is soontobe doctor and we're all going to celebrate again now. So I will now pass over to Yvette Maker to chair the secondtolast panel.

YVETTE MAKER: Thanks, Anna. So, as well as showcasing all of the amazing work going on across the university, now our roundtable discussions in the last session brought up a range of priorities and research gaps for us to think about and hopefully address in the future. And we've brought together, as Anna said, experts in different fields to further explore these issues and priorities more in this session so if I can invite our four panellists to join me up here. Jen Hargrave, Keith McVilly, Therese Sands and Jennifer Fitzgerald. Thank you.

(APPLAUSE).

So we managed to put you first twice, Jen. I'm going to introduce you again. Jen may be familiar from this morning's session. For those of you who weren't around then, we're very fortunate to have Jen Hargrave, who is a senior policy and communications officer on violence against women with disabilities at Women with Disabilities Victoria. She has represented WDBV at the royal commission's inquiry into family violence and advisory committees. She has worked as a researcher on the choice and control on the NDIS project that some of you heard about in the last session and I should mention she has also joined our DRI steering committee. She has previously worked in disability liaison projects working with tertiary education students. Keith McVilly as you know is the chair of the DRI and professorial fellow in disability and inclusion, which is a joint appointment between ULM and Scope. Keith's primary area of expertise is in intellectual and developmental disabilities, acquired brain injury and forensic disability and he has worked as a direct support work he is with people with disability, a clinician and public service manager in public health services and private practice, as well as the university sector. We're also very fortunate to have our third panellist, Therese Sands, from Disabled People's Organisations Australia. She has worked for 25 years in policy development, capacity building and advocacy in the area of disability and human rights and she is the director of DPO Australia. She has extensive theoretical and practical experience of United Nations human rights mechanisms and how to use UN documents to further domestic advocacy for the rights of people with disability. Therese has a master of human rights, law and policy. She is a life member of People with Disability Australia and a member of women with disabilities Australia. And our fourth panellist, Dr Jennifer Fitzgerald. She became the chief executive officer of Scope in January 2012. Her valuedriven approach has led her to work in the disability, health, aged care and community sectors for more than 30 years. She has a bachelor of applied sciences in physiotherapy, a graduate diploma of physiotherapy in neurology, a Masters in business administration and a doctorate of physiotherapy. She is a director of national disability services, ability firstAustralia and ability roundtable and chair of cerebral palsy Australia. She is also currently on the NDIA advisory council housing innovation working group and the Victorian ministerial NDIS implementation task force, so it's very much an esteemed panel we've got together today and we're very thankful that you are all here. We've asked each of our panellists to begin by highlighting what you see as particularly pressing or relevant research priorities. If I could perhaps put that to you first, Jen.

JEN HARGRAVE: (Inaudible). (No mic by speaker)...to change from shortterm funding cycles so that people can be further supported to take the time that it takes to adapting to their new roles. We can see promising practice which involves people with disabilities in research and so we have a lot of opportunities to explore answers to some of those questions. Moving on to another aspect of the questions to discuss, as a policy officer I really have to take the opportunity to think about areas where there is a lack of research. University the University of Melbourne has researchers from various disciplines who have done work examining violence against people with disabilities and with the introduction of the NDIS and the national safeguarding framework, Women with Disabilities Victoria are seeing a great need to push this research further. Having discussed this need with practitioners, colleagues and some academics, who have made a great contribution to the area, we've identified three research priorities which I'll just go through really quickly. Firstly, there is a need for research that examines comparatively the gendered pattern of violence against girls and boys. Men and women, with disabilities. This research needs to explore violence in community and institutional settings, the nature of the relationships in which it occurs, the gender of the perpetrators and the range of violent and controlling behaviours. This research would prepare us well for work on how to respond and to prevent violence, including how to work with people with and without disabilities who choose to use violence against people with disabilities.

Secondly, Dr Sue Dyson recently reported to Women with Disabilities Victoria that when presented with evidence about gender inequality and its impact, there is a deeply embedded discomfort from disability services being a femaledominated workforce who can experience disempowerment. There is a complexity around workers identifying their own experiences of gender inequality before addressing that experience by people with disabilities. So the question would be, what are approaches to addressing this and what have other workforces done to answer these questions? And the third one, looking through a legal frame, is that women who receive intimate disability support in their own home have equal opportunity exemptions to choose the gender of their report workers bus a woman receiving intimate support in a service setting does not have an exemption. Can the disparity of these be justified? So it's really good we can open up the discussion about priorities for the future, thanks.

YVETTE MAKER: Thanks, Jen. Keith, what do you see as key priorities and issues for research?

KEITH McGill: I've changed a little what I was going to talk about this afternoon. In my opening remarks this morning, I talked a little bit about the research priorities that were developed as part of the Scope/University of Melbourne partnership, and those priorities were developed through a review of the literature, what is currently being researched and where are the research gaps, but also importantly in a consultation process involving a number of groups of people with lived experience of disability. From that consultation process, it was becoming increasingly clear that the research agenda for people with disability did not differ greatly from the research agenda for the wider community. Strange, that! But the issues of needing somewhere decent to live, getting a good job, having an education, being able to participate in social and political processes. And having an opportunity to develop and nurture and experience and celebrate deep personal relationships. I don't think that that agenda would come as anything strange to anybody in the wider community. But where my thoughts started to turn, as the day has gone on, and listening to a number of the presentation, was I think in order to achieve this research agenda, we've got to take a step back and, as an important part of the process, and this is very much with my professorial hat, my educational hat, on, we need to prepare the next generation of researchers to be highly literate in research processes that are conducive to exploring the issues relevant to people with disability, and processes which are conducive to producing and, indeed, evidence that speaks to their experience.

We need researchers who are capable and confident in codesign and coproduction. And I think we saw the evidence of the struggles that we all face this morning, over the question of, "When do I put in an ethics application"? My burning question is, if I'm going to work with colleagues with disability, as colleagues, why the hell should I put in an ethics application and get permission to employ somebody? Surely, good practice and ethical safeguarding should be provided by best practice in human resources policy. We still seem not to have made the leap from the person with disability as object, maybe as participant, to the status of colleague. And that's manifesting itself in some of these the uneasiness about when to put in an ethics application. I do not put in ethics applications with the idea of having a colleague with a disability as part of our team. That's for HR to sort out. I do put in ethics applications when people with disabilities are participants in research. But I think that's a challenge.

I think we need to and, um, Elaine mentioned this in our session, that we shouldn't always be looking for the evils and the wrongs of the world, and I think the phrase we used was, "We sometimes should give ourselves a pat on the back". And I think rather than a research agenda that is characterised by research for wrong and failings, we need to equip ourselves with the skills of a preseated inquiry. We need researchers who go looking for where it is working and asking questions about, why is it working? And how we can take what's already working and do more of it. Appreciative inquiry I think, is a highly underutilised approach to research.

I think we need to be equipped with the skills of mixed design and mixed methodology. Surely combining quantitative and qualitative research methods sees more cohesive designs. It's not just about counting a few numbers and asking a few questions and then sort of all writing it up together. Good mixed method design takes skill, and I think we need to equip ourselves with the skills to do thorough, rigorous mixed methodology in our research.

I think we need to be exploring not only a rightsbased agenda, but also how we can go about incorporating aspects of emancipatory research in our practice, and I think this is an area where we really do need to develop some skills, because as scientists and as practitioners, we can all too often set aside the rigours of research and become ideologically driven advocates, and as part of a research community we need to be able to track and reflect on our own practice and where we might be in danger of crossing the line.

But where that good work can be done, that good integration of good science and of advocacy, that's seen in good emancipatory research and maybe if we start to equip ourselves with those skills.

YVETTE MAKER: Keith, I may have to invoke my position as chair and...

KEITH McGill: And that's the point I'm just about to end up on. At the end of the day I think it's about relationships relationships between ourselves as researchers working collaboratively together, and relationships between people with disability and the wider community. And I think we need to feel comfortable in working not only in research practice, but working in truly intimate relationships to undertake that research. I'll leave it at that.

YVETTE MAKER: Thanks, Keith. And, Therese, from your perspective, what priorities and issues should we be focusing on?

THERESE SANDS: Well, coming from the perspective of Disabled People's Organisations, it's not surprising that we have a strong adherence to the disability rights movement's, "Nothing about us without us". So in terms of our work, it's around human rights and advocating for the human rights of people with disability, and critical to that would be the research and evidence base to support a lot of our work, which is often about reframing language and terminology of the service systems. So, you know, to actually name it for what it is in terms of human rights violations. And I'll talk about that in a moment. But I think one of the critical things for us is disabilityinclusive research, which is about recognising, valuing and including in a genuine codesign framework or methodology, the expertise of people with disability, including through their representative organisations, or through DPOs. disabled people's organisations. So it's about DPOled research where we're setting the agenda with researchers, where we're part of the research design, the implementation, the evaluation, over and above participants research participants or researchers who may be people with disability. I realised this today there has been a lot of discussion around that kind of research, which is fantastic, but I think what we would really like to see is some kind of more structure or a framework, such as has recently occurred at the University of NSW, where there is now, I think, approval by the University of NSW for an interdisciplinary research structure for disability innovation that's what it is called. But it is basically a partnership initiative between DPOs and the University of NSW where the structure of the research being undertaken the governance and operational levels will have designated roles for people with disability, where there will be advisory panels of researchers with disability, people with disability, from the community as well as from DPOs, et cetera. And that's an exciting development that I think is really important in this space. I think some of the other areas I just look, there's so many issues I could talk about in terms of needing research, but one that I just wanted to talk about, because we are very focused on the National Disability Insurance Scheme, we have a quality and safeguarding framework, and we're talking about in that framework reducing or eliminating restrictive practices. Now, restrictive practices is one of those terminologies that we use around well, it's service system language, really, for the management of people. And we're now starting to use the term of moving to "Positive behaviour support". But really, what is positive behaviour support? Where is the evidence? What do people with disabilities say, what is the trauma effects of restrictive practices? And what is the support they need if there is support that they need around behaviour or learning skills? Where is the environment causing a need for the application of these practices? So for us there is a real area there around how will positive behaviour support, what is it and will it just become another form of restrictive practice? I think we need some work with people with disability in that area.

I think another area that is really critical is around the right to parent. We are constantly hearing of mothers and mothers with disability or parents with disability who are either dissuaded or coerced not to have children or have their children removed, especially parents with psychosocial or cognitive impairments disabilities, and they're being removed because of disability because disability is viewed as a risk factor, as opposed to any other actual risk to the child, and often this occurs as soon as the mother delivers the child in the hospital, sometimes without even the knowledge of the mother that this has occurred. But I think there is research that we need around the trauma and the impact of that on mothers, on parents with disability, of removal. You know, we hear these stories every day, through our membership and other people we're working with, about just lifelong trauma from this kind of removal. But it's couched from the child protection system about the risks that were imposed on the child. That were potentially there for the child.

We need to also perhaps in that respect look at research with children, or adults, who have parents with disability and what was their experience growing up? What are the successes of a family where a parent has a disability in it? We don't see the positive side of that story, you know, very often.