Disability and Disaster Resilience: clearing a path issues paper

This session was part of the Advocacy Sector Conversations Forum series held on Zoom on 3 June 2021.


In August 2020 DARU hosted a Disability and Disaster Resilience forum at a time when the community was concurrently navigating bushfire recovery and COVID-19response. It was clear that disaster planning failed to be inclusive of people with disability in spite of the rights-based frameworks and policies already in place. The purpose of the forum was to identify and explore improved responses and priority issues in emergency management for people with disability

Associate Professor Michelle Villeneuve from the Centre for Disability Research and Policy at the University of Sydney, who leads Australian research on Disability Inclusive Disaster Risk Reduction, was invited to compile the Issues Paper coming out of the Forum. In this session, Michelle presents an overview of the consolidated issues and what actions need to be taken by individuals and community organisations, and supported at all levels of government.



Session resources

Links and downloads for the resources mentioned in this session can be found at the bottom of this post.


Listen to audio



Melissa Hale:
Good morning, everyone.  Welcome to the first session of the June 2021 Advocacy Sector Conversation series.  My name is Melissa Hale and I’m the coordinator of the Disability Advocacy Resource Unit.  Before I begin, I would like to begin by acknowledging the Wurundjeri People  of the Kulin nation, the traditional custodians of the land on which I am coming to you from today, and pay my respect to their elders past, present and emerging.  I extend that respect to Aboriginal and Torres Strait Islander people here today.  I also acknowledge that sovereignty were never ceded and that it always was and always will be Aboriginal land.

Once again, we are delivering the advocacy sector conversations forum to you online.  We hope that at some stage, we will be able to deliver the series face to face when it’s safe to do so in an inclusive and accessible way.  However, we hope you’ve all settled in comfortably and are ready for a fantastic series this week.  We encourage your active participation today, so please type your questions in the Q & A box and at the end of the session, I will facilitate a Q & A session with our presenter.  The first session today is the presentation in the Disability and Disaster Resilience Issues Paper.

You might remember last year that we hosted a forum that talked about these issues, and some potential solutions to how we could do preparation, response and recovery from disasters better and make them more inclusive for people with disabilities.  DARU engaged Associate Professor Michelle Villeneuve from the Centre for Disability Research and Policy at the University of Sydney, who leads Australian Research on disability increased in disaster risk reduction, and her team to take these issues and identify the key actions that needed to be undertaken by individuals and community organisations and support it at all levels of government.  Michelle is here with us today to share some of these findings with you all. So please give a warm welcome to Michelle Villeneuve.

Michelle Villeneuve:
Thanks so much Melissa, for that lovely introduction.  And before I begin, I would like to acknowledge that I’m calling in from the land of Gadigal people of the Eora nation.   And I’d like to pay my respects to Aboriginal people who might be with us here today.  Elders past, present and emerging.  And, uh, I want to really thank DARU and VCOSS for the opportunity to, uh, to spend, uh, the greater part of the last year, uh, uh, immersed in what are the key issues for people with disability in disasters.

And what I’m hoping to present today is a, uh, bit of a roadmap for some of the, the, the way forward.   But before we do that, we’ll look at some of the issues and some of the roadblocks along the way.  Um, DARU committed to developing this issues paper that would outline issues and put forth a suite of practical actions.  So, I want to take you on a bit of a journey to, uh, understanding what those issues are, and how that might give us some insights into a way forward.

Uh, the whole point of this issues paper is that disability advocates can then use this as a tool for advocating for change toward disability inclusive emergency planning in practice.  The questions that are guid- that guided this issues paper were fundamentally what has to change to ensure the rights of people with disability are embedded in a meaningful way into all government programmes, plans, strategies and policies that are designed to increase the resilience of all Australians.

So, practically what that, what that looked like was, uh, trying to understand how do we clear that path to full inclusion for people with disability.  Now, we know that people with disability are two to four times more likely to die or be injured in a disaster than the general population.  They experienced higher risk of injury and loss of property.  They have greater difficulty with evacuation and sheltering and they require more intensive health and social services during and after disaster events.

The black summer bushfires that devastated Australian communities and the ongoing pandemic have pointed to Australia’s deficiencies in realising protections under the United Nations Convention on the Rights of Persons with Disability. And these events have shown the disproportionate impact of this disaster on Australians with disability.

These impacts really stem from a range of factors.  They include stigma and discrimination that marginalises people with disability from mainstream social, economic and cultural participation on an everyday basis.  And we know that multiple categories of vulnerability also intersect, um, with disability which amplifies risk in emergency situations.

When we looked at, um, the voices and perspective of Australians, uh, on the topic of disability and disaster, it really showed that their, thier perceptions of being a burden was another thing that exacerbated, um, their, their risks in emergency situations.  Um, an example quote from one of our participants in, in the research said, “There’s something that I could take that makes my life a whole lot easier, but I don’t feel like I’m allowed to ask that I can take it, it might take up space in the boat or helicopter, and we need that for other people.  I don’t want to be pulling the disability card.  I don’t want to be putting up my hands being special being different.”  Or, “I’m afraid, actually, that people might say no, and it would be really embarrassing if I asked to have that equipment I need, and they say no to me.”

So, these are issues that people might not always think about. There was also a poignant example from the Disability Royal Commission, hearing five on the ongoing experience of people with disability and Covid-19 that similarly illustrates this, um, ongoing stigma and discrimination and how it influences people’s help-seeking behaviours.

Um, in this case, one of the participants relied on lip reading to understand verbal communication, but didn’t feel comfortable disclosing her hearing impairment to people wearing, uh, masks, even though she couldn’t understand what they were saying.  Um, I don’t tend to come forward that I’m hearing impaired.  Whereas I know it’s better for me to come with an outright, I just don’t feel quite comfortable being very open to strangers about these things, especially since I don’t know how they would perceive it, or how they would understand and communicate.

So, this social isolation and everyday discrimination that people with disability experience, underlies decisions that reinforce social inequalities in emergency situations.  What it looks like then is people not reaching out to ask for help or waiting too long to ask for help when things really become an emergency. Another participant at the Disability Royal Commission said, “At the start of the pandemic,” talking about an individual with disability, they became isolated from the community, their access to caregivers was reduced, and they were afraid to present the hospital, um, to a mounting complication they had.

When they did present, it was very late in the course of their problem, and they ended up requiring intensive care for a period of time and they were in a precarious situation as a result.  So, I think these are some of the challenges that we’re up against when we think about the vulnerability of people with disability in emergency situations.  We know that disability inclusion in disaster risk reduction is not going to be achieved without also challenging that social discrimination, the marginalisation and the institutional neglect that is experienced by people with disability.

Now, the social vulnerability approach has really dominated the disability and disaster research, it has served a good purpose in terms of advancing our understanding about the disproportionate risk experienced by people with disability.  And like the social model of disability, the vulnerability framework has helped to call out the pre-existing structural barriers for people with disability that increase their risk in emergency situations, and to advocate for that removal.

This vulnerability narrative, though, is the dominant narrative.  And people with disability tell us that labelling us as disabled can actually increase our risk.  And they say that’s because it doesn’t help people to understand what the person is vulnerable to, what factors heighten the risk, what can be done to remove the barriers.  Instead, it puts people in a category of “special” and puts them in a position of being passive recipients of support.  And when people are put in this role, they’re not expected to take a meaningful place as participants as decision makers and as drivers of change.

And there were two witnesses at the Disability Royal Commission who explained how this perpetuates stigma and discrimination toward people with disability on the whole. One of them said, uh, “We’re repeatedly classed as vulnerable and myself and other disabled people, advocates and friends around me, we find this language very problematic.  It creates a lot of stigma surrounding our position in the world, especially in the middle of what we’re experiencing right now.”  And another said, “It comes back to the inherent view of disability as deficit.  So, people are seen as less not able, uh, and in need of care or treatment or protection in some way.  And so, it denies the dignity of the human being and it denies our personal resilience that we may have.”

So, the situation really is that people with disability are not one group.  People have diverse capabilities, experiences and support needs.  And they manage their everyday support needs in situations that are often  inaccessible in the first instance.  So, they’re actually best positioned to identify what their support needs are and should be in an emergency situation.

On the slide, there’s a picture of, um, in the bottom corner, uh, a telephone and Delwin over to the side. And there’s a video that shows that DARU showed at the, at the forum last year of Dalwin’s evacuation story from Lakes Entrance during the height of the Black Summer bushfires.  And this is on the video it is the story of Dalwin’s, uh, evacuation, but it’s also the story of Gippsland Disability advocate, Denise Lamble and the role that she stepped into to play to support Delwin when she arrived at an inaccessible evacuation centre and needed support.

Um, Denise says on the video that people with disabilities seem to be forgotten in the mayhem and the chaos of the fire on the evacuations. So, GDA Gippsland, disability advocacy stepped up and they went to these inaccessible relief centres and they took action by supporting people with disability and acting as an advocate.  Um, they found accessible transportation, they found places for people to sleep, they negotiated, um, with organisations like nursing homes and taxis, to waive expenses to provide that much needed and immediate support.

And Gippsland Disability Advocacy has been continuing in this role since the Black Summer Bushfires, securing small amounts of funding, um, from charitable organisations and support from VCOSS, uh, during that bushfire period, so that they can continue in that advocacy role to support people with disability during the long haul of recovery.  And I wanted to point out this nature of support.  And one of the features, um, that we need to be thinking about in, um, inclusive emergency planning.

Gippsland Disability Advocates provided instrumental support for people to know what to do to find transportation they needed to find accommodation immediately.  And they provided emotional support, reassurance and care that someone was there and someone would have their back.

And I think another story that came across in the, in the forum from last year was Tony’s story.  Um, Tony lives in a bushfire risk area.  And on the video, she was in conversation with Angela Cook from Country Fire Authority in Victoria.  And they were having a conversation about the barriers that Tony experiences to bushfire evacuation.  And that’s interesting, of course, the barriers that Tony identifies on the video.  But what was actually more interesting and perhaps even more powerful, was the emotional response that Tony had to being invited to speak about the barriers.

Um, she was quite emotional, um, and really took a moment and all of us in audience also had to take a moment to pause and wait for Tony to, uh, regroup and tell her story.  And it’s actually in that moment of being invited to participate, to be invited to tell her story about the barriers to work with Country Fire Authority to problem solve around those barriers that, uh, Tony was actually feeling empowered.  And I think, I think that some of the emotion that was coming out in those videos was actually a demonstration of the empowerment that Tony was feeling and the support she was having to tell her story.

So, that brings us to the topic of today, which is how do we get from those issues to what where we need to go which is honouring and recognising the capabilities of people with disability.  So, the principles that guided the development of this issue, paper were these three things: People with disability are experts in their own needs.  Um, meaningful participation of people with disability is what’s going to enable more effective emergency management practices and disability inclusion in emergency management is going to require cross sector collaboration because no one group is going to be able to achieve and overcome those barriers on their own.

In the issue paper, we put together, um, the lived experience of people with disability to build a picture of the roadblocks.  We combine that with the international research on disability and disaster.  And then we took those issues and roadblocks and emerging recommendations to multiple stakeholders from the disability, the community and the emergency services sector, including government to examine what those emerging pathways forward might look like and in terms of examining the feasibility of them in actual practice.

So, the roadblocks on the slide are what I’m going to overview today, um, overlooked and excluded, higher demands, fewer choices.  Under prepared support services, extra supports and equal access to the same supports, and shared but defined responsibilities.  And what we’ll find is that the solutions are actually embedded, uh, inside of those issues. And I’ll end today with, uh, five recommendations about, uh, how we can better include people with disability and their support needs and emergency management arrangements.

In terms of, uh, people being overlooked, and excluded, um, the vulnerability of people with disability in emergencies has increased because people with disability have not been included in community level disaster preparedness programmes.  In the research that I’ve been doing over the last six years in Australia, we see this repeatedly, the absence of people with disability from those conversations.

In the literature, where the needs and perspectives of people with disability are mentioned, they’re assumed by non-disabled professionals without adequate consultation.  They focus narrowly on one aspect of disability quite often physical accessibility or physical impairments.  They’re limited to the response phase of emergency management with limited attention to preparedness and recovery.  And they emphasise doing for not with people with disability.

All of these things perpetuate in- inequalities for people with disability and increase their vulnerability in disaster.  And that’s because we don’t know what their support needs are.  We don’t understand how to respond better to them.  And therefore, we can’t enact effective responses in moments of uncertainty.

This further complicates things because it also means that the potential contributions of people with disability are also not recognised.  In addition to taking our individual responsibilities, uh, for disaster preparedness, a big part of the Australian culture is actually stepping up and volunteering and, uh, knowing your neighbours and lending a hand and looking out particularly in times of disaster.  And these are valued roles that communities, uh, take on and, and they help each other to prepare, respond and recover.

So, building resilience for everyone also means making sure that people with disability have opportunity to participate in these roles too.  This is actually a global challenge.  And, uh, the UN survey on people with disability and disasters also found that people with disability were being excluded from these conversations and these opportunities worldwide.  Our research in Australia has been similarly showing the same impact.

Although people with disability are best placed to identify their support needs, they’re absent from the planning process and the policy formulation that got, that helps to guide how those practices are enacted.  At the start of the global pandemic, Australia’s public health response and management for Covid-19 similarly failed to recognise the needs of people with disability.

An underlying issue is that if people, uh, aren’t even mentioned in emergency planning documents, they usually only included as one of a number of vulnerable groups alongside others children, pregnant women, people from culturally and linguistically diverse communities.  When we do this, it may obscure the specific needs that people with disability have in emergencies.  And on the screen, I have a quote from a council emergency manager who said, “Too often, people with disability are an afterthought, only included as an appendix in disaster management plans.”

The second issue is higher demands and fewer choices.  We know personal emergency preparedness is one of the most important things people can do to reduce the risk and increase the resilience to disaster.  But we have to recognise that emergency planning places really high demands on people with disability.  Personal emergency planning is really hard because it requires people with disability to renew their plans every time their support needs and situation changes.  And for some people with disability that can be on a very regular basis.

Planning takes place against a backdrop of changing policies, changing systems for how mainstream disability specific services are organised, and delivered.  And it demands planning demands renegotiation with others about how support needs will be managed in an emergency.  Now, it’s further complicated because the supports people receive come from multiple community and disability service providers operating across distributed networks, all with different capacities to support both their staff during a disaster situation and the people that they support.

Disasters create confusion and additionally, so when the information resources, warnings that are designed to increase safety for all citizens, are not available in accessible formats that people with disability can understand and use.  So, all of this brings to the surface, those barriers that I talked about that restrict choices for people with disability, and that in people’s sense of safety and wellbeing.  So, and this includes those ingrained stigma and, uh, discrimination people experience.

So, in our research, this is what people with disability mean when they say that emergency preparedness is overwhelming, it’s messy, it’s confronting.  And they do say it must be done even in the face of all of those challenges.  But given this particular context, it’s not surprising that studies have shown that people with disability do not feel confident in their ability to prepare and respond to disasters.

We’ve been showing in Australia with our research that with the right tools, with the right supports, ideally, co-designed with people with disability, people can self-assess their risk, and they can tailor emergency preparedness to their individual support needs and situations.  The job of government and emergency services is to provide those tools so that people can help themselves during emergencies. And this is really a fundamental principle of Australia’s national strategy for disaster risk reduction.

But the problem until recently is that we didn’t have sufficient tools to help people, uh, tailor emergency preparedness to their support needs.  And still additional support resources and advocacy, uh, may be needed by people with disability to take effective actions.  And yet they’re not planned for and community level emergency plans.  So, the current situation is that people with disability have fewer choices, fewer opportunities to access and use risk information and preparedness resources.  And this actually influences what people are able to access, how they’re able to use that to make a plan, and it impacts their response during a disaster.

The Person Centred Emergency Preparedness process tool and framework was co-designed with people with disability and the services that support them to address these needs. Uh, the piece that keeps people with disability and their support needs at the centre of emergency preparedness planning.  And the piece that has three components: a capability framework that consists of eight elements to support self-assessment of strengths and capabilities, and the supports that people need for their function and wellbeing in emergencies. The piece that has three principles that, uh, guide the joint effort of multiple stakeholders to enable that tailored planning and support and four process steps that enable the developmental progression of preparedness actions that facilitate linkages between people with disability, their support services, and emergency managers.

So, what the piece that helps to do is to bring emergency personnel together with people with disability, to learn, uh, together about what their support needs are and provide more effective responses both in the planning, uh, the response and in the recovery phases of disaster. The interactive dialogue that happens as a result of person centred emergency planning conversation, means that people with disability have input into the process.  And it also means that emergency managers learn about the capabilities and the support needs of people with disability.

And this increases everyone’s understandings, uh, about what people with disabilities need in disaster, and it uphold Australia’s principle of shared responsibility and inclusion for everyone.  The third issue, um, identified was underprepared support services.  Australian service providers, those people, uh, providing specialist disability support or everyday supports for people with disability to go about their, um, everyday activities are arguably well positioned to enable the people they support to be active, engaged participants in emergency preparedness.

They’re on the front line of community based care and support their relationships, equip, equip them with intimate knowledge.  And they’re the fundamental link really between people with disability, uh, their families and the wider community.  So, they form a crucial component of the individual support network.  Indeed, our research has shown that support, um, providers are some of the first people that people with disability will look to, uh, or call on when disaster strikes.

But, um, although we are recognising this interdependence between people with disability and their support networks, we were recognising also that service providers have also been excluded from emergency preparedness planning. Um, they’re not integrated into the planning process, and the services are not intentionally resourced to fulfil the potential role that they have in enabling preparedness with the people they support.

There’s also no explicit policy guideline, uh, guidance, uh, for the development and implementation or evaluation of those capabilities across the community and the disability and health sectors.  The issues paper will outline in more detail, um, roles for service providers and two fundamental roles are enabling person centred emergency preparedness in the people that they support, and also ensuring organisational preparedness for the service continuity, um, for people in times of disaster.

These two things together are really critical.  Not only did they support people with disability and disaster, but they also recognise the duty of care that community service organisations have to the people they support, and to the staff who provide those services.  So, harnessing this potential in the Australian landscape is not an easy task.  Um, there are multiple service providers from multiple agencies.  Um, some people, uh, are self-managing their supports and services and were directly employing people to support them.  Other people are not connected to specialists disability services, and they might receive support through mainstream community groups and activities who similarly might not be prepared, or be prepared to support and enable preparedness in those people.

Still, other people might receive support through health or aged care or social welfare sectors and not from the disability sector itself.  So, there’s an ongoing need for capacity development in service providers to develop these two roles and these two responsibilities, um, so that they can step up and engage in, uh, their potential contributions in this space.

There are definitely additional challenges for it.  Um, when disruptions to support services happen in a natural hazard context, our research has shown that participants raised constant questions about what happens, who checks in on people with disability, what happens when your support people are also affected during a disaster?  What happens if you have nobody to check on you?

These questions really are fundamental to the reasons those roles of providers are so essential.  They really, they really have, um, us thinking about the important critical pre planning for organisational preparedness that services need to make.  And also, the links between the preparedness of the organisation and the preparedness of every individual that they, that receive services from that from that group.

Disruption to services was also evident during Covid-19.  And, uh, a participant of the Disability Royal Commission, a witness at the DRC said, “There was no change to the way that I access services, a lot of my services were actually cancelled and I wasn’t able to access them.”  And I think this also speaks to another challenge. Uh, without business and service continuity plans and without that effective communication about the responsibility in times of disaster, then people won’t know how they’re going to manage those support services and who they’re going to call on.

This led to significant disruptions in Australia in our recent hazard events, um, with some of our participants in our research going up to 13 days without access to support providers, um, and without any of the typical support they require for their daily needs.  In its review of submissions to the public hearing five on the experiences of people with disability, particularly during the ongoing Covid-19 pandemic, the Disability Royal Commission pointed to the National Disability Insurance Schemes Quality and Safeguard Commission.

Their reliance on that commission was on service providers to manage risk. But actually Anne Kavanagh, professor of disability and health at Melbourne University pointed out through her research that service providers don’t have the knowledge, skills or training to make an effective assessment of those risks, nor do they have the tools or training to manage those risks.  And I think the what we’re learning in Australia through the Covid-19 experience, and what we’ve been learning over a number of years through repeated natural hazard emergency situations is that this situation needs to change.  And we need to figure out a way to harness that potential and build that capability in the service sector.

We can’t just push responsibility onto service providers without providing that capacity development and support for them to enact those roles effectively.  What we risk here is actually introducing, uh, more, uh, risks to people with disability in disasters when we’re not paying attention to the critical roles that these providers can play.  Now, a range of different services might provide these roles and a range of different services need to be coordinated across the sector in, in order for those responsibilities to come into play.  And I’ll show you a little image in a bit of some of the challenges for that.

Service providers may also come into play when it comes to thinking about the extra supports and the equal access to the same supports, which was our issue number four.  People with disability rely on different types of function based supports every day.  And these supports are what get compromised during and after a disaster.  And this challenges people safety and well-being.

So, despite the fact that disability became prominent in the United Nations Convention on the Rights of Persons with disability as far back as 2008.  And despite the fact that we now see the inclusion of people with disability in the Sendai framework for disaster risk reduction, we still don’t have, uh, procedures for identifying what are the extra supports that people need to enable equitable access on par with everyone else in society.

These documents, particularly Article 11 of the UN CRPD recognises that we need to take all extra precautions to address the extra support needs of people with disability.  So, what can we do to increase our knowledge about what those supports are and how to respond effectively to them?  This is a significant challenge, particularly because as we mentioned before, people with disability are not one group.  Understanding what the extra support needs are of a wide range of people with different function based support needs, needs to be resourced, organised and considered.  And how that’s going to be responded to in an emergency context also needs the similar consideration.

The person centred tool that I mentioned earlier helps to match emergency planning to those support needs, and it may be one way forward.  Um, by identifying the function-based support needs in those eight elements of social connectedness, transportation assistance, animals, assistive technology, communication, personal support, management of health and living situation, those are areas that we may be able to start to begin to understand the extra support needs and respond more effectively to them.

On the screen, I have a quote of a disability advocate who said, “We’ve got to do more work ourselves to raise awareness because people with disability are not considered, or their last to be considered. And local knowledge is the key, local knowledge can be used to stimulate the systems into caring”.

In the research that we’ve been doing, we’ve been bringing local knowledge to bear on what are the assets in each of these elements of the person centred emergency preparedness framework that can be brought in in a pre-planning stage for emergencies.  So, that when it comes to a time of evacuation warnings, for example, people will know where they can access transportation, and how they can use that transportation to evacuate early and quickly from a bushfire or a flood evacuation scenario, for example.

So, data and information needs to inform the planning that we do.  If the tools that support planning are not inclusive of people with disability, then people with disability are going to be overlooked in the planning process.  And this requires consideration at both the individual and the community level.  People need to be actively engaged in identifying what their support needs are, government and emergency services need to conduct community level risk assessments that take into account those extra support needs and embed that into their community level planning processes so that everyone is safe in a disaster.

Governments also need to assess the impact of disaster risk reduction programmes and services, the kinds of programmes and services that support preplanning, but also the kinds of programmes and services that support people, uh, immediately after and in the long term of recovery.  And we don’t know very much about the recovery needs of people with disability.

So, there’s an, uh, important role for role for data and information to play in understanding how people access people with disability access those support services following a disaster, and the impact of those services on their safety and wellbeing.  Now in the issues paper, um, there’s more detail in this section that will talk about what are the ways that we might consider valued and valuable data and information.  And that must include obviously Australian Bureau statistics data that can tell us very helpful things about the profile of people who are in our community.

But as valuable as this data is, it only gives a superficial impression of the factors.  We need to actually dig deeper in our risk assessments at the committee level and, uh, our inclusive planning processes to make sure we understand what the experiences of people with disability are.   And that raises such questions like What is it like to be a person with a disability during and after emergency?  Can one hear or understand the warnings? Can one quickly exit a home or workplace?  Can one move about in their community after evacuating?  Are they’re necessary or vital items that are not likely to be available in emergency centres or alternative places of accommodation that we need to be thinking about? Does the person require assistance from other people and what is the nature of that personal support?

Being able to answer these questions requires meaningful partnerships with the disability community and through their representative organisation.  Despite advancements of disability inclusive Disaster Risk Reduction and that agenda globally, there are very few experiences of people with disability leading policy and practice development.  And I’m proud to say that research in Australia is starting to change that situation with the research that we’ve been leading.

Unfortunately, more often people with disability are excluded from decision making, and particularly at the local community level.  This body of research has identified the need to move beyond advocacy to realise those rights through data informed decision making and practice that really develops policy toward disability inclusive disaster risk reduction.  This is going to require more effective communication, more meaningful engagement, and active participation of people with disability and their representatives.

In the issues paper, I’ve put in a guide to support that process. Um, Box 3.5 of the issue paper provides guiding questions that are organised according to the phases of disaster, and might be a helpful starting point for emergency managers to begin that planning process, and identify the kinds of conversations they need to have with people with disability and the representative organisations and advocates well before an event, prior to an event, such as when there’s an emergency warning, notification or advice happening, during an event so that information and instructions are clear for all citizens to follow and following event so that recovery information and access to services and supports are also available to people with disability.

So, understanding the support needs of people at each of these stages is going to actually lead toward more effective data and information gathering, and more effective and responsive emergency management planning.

The fifth issue shared but defined responsibility.  And on the slide, I have, uh, some documents on the left top left the Convention on the Rights of Persons with Disability.  And on the right, the Sendai framework for disaster risk reduction, both which provide international guidance on person centred, uh, enablement approaches to ensuring the rights and protections of people with disability and disaster.

The Sendai framework, which came later builds on the UN Convention, and I think goes one step further moves beyond simple protection, but also meaningful and active engagement of people with disability in the planning process.  Below those pictures, I have two other documents on the bottom right, Australia’s National Disaster Risk Reduction Framework, which is a way for us to enact our, uh, our vision of shared responsibility that’s embedded into Australia’s national policy frameworks and strategies.

And on the left, what is coming to be the new national disability strategy and for the first time, the inclusion of disability inclusive emergency planning into target outcomes and indicators of success in the emergency management space.  These are going to be really important documents in us understanding how to move forward in this space.

But the problem with, uh, policy documents is that don’t provide us with a toolkit on how to do it.  Uh, we need more structured information and, uh, strategies and tips for how to move that forward.  And it’s really this lack of tools and the lack of programmatic guidance for how to include people with disability and their support networks that has presented the significant risk to safety and well-being and disasters.  And people with disabilities aren’t included, then their capabilities, uh, to contribute to identifying what those extra support needs are not considered.  And only people with disability can identify what their support needs are.

Unfortunately, in the reviews of planning at a community level to date, it’s been limited to the involvement of community and disability service providers.  And I think we need to recognise a very fundamental role that they play, especially because they know and understand the people they support.  And they know and understand the local community assets that can have an important role in ensuring safety and support for people with disability during a disaster.

But we can’t leave people with disability and their representatives out of that conversation.  Because only people with disability can understand their experiences of disaster and contribute first-hand what needs to change. So, when we think about this shared but defined responsibilities, we need to think about what happens on the individual level, to build individual capability for planning and preparedness so that people know how to, uh, respond and act together with their support network in an emergency.

We need to build organisational level capability for service continuity of the services and supports that people will Disability rely on in the community.  When we do these two things together, we’re optimising individual self-reliance and planned reliance on the people who support them every day.  And the third piece we need to consider is what happens in an inclusive Emergency Management Planning and policy context.  How can we learn about the extra supports that people have that are not met by community services, and that overwhelm them in a disaster situation, and that must be considered in an emergency planning context.

This is where community level emergency planning comes into, comes into play.  On this screen, I’ve given you probably the most complex, uh, picture of all of the slides today, and I’ve divided it on the top into the policy context, and on the bottom into the practice context, because I wanted to put our individual responsibility into a context of the shared responsibility of multiple stakeholders in managing this very complex challenge of ensuring safety and well-being of people with disability in disaster situations.

At the very top, we see the UN Convention and the Sendai framework for disaster risk reduction.  And just below that, Australia’s, uh, obligations and responsibilities in terms of policy framework, on the left the new National Disability Strategy and the Quality and Safeguarding Standards that guide the delivery of supports and services, and on the right the emergency management arrangements that are guided by our national strategy and disaster risk reduction frameworks.

And the second half of that diagram, you see the practice context, and the practice context is complex.  On the very bottom row, uh, there are a number of things that happen that are connected to our local councils and the support coordinative and leadership function that they play in their communities.   Local councils play an important role in developing their communities, engaging with their communities, working together with, uh, disability and community organisations in their interagency groups and networks, to support their understanding about the needs of the community and their response as a council in an everyday way to programmes and services.

That information needs to find its way into emergency management planning.  And if we’re going to build into what already happens in the community development engagement, and now we’re hearing of councils having resilience roles in Council, which is very exciting, and community resilience networks in some councils.  When we can begin to connect the role and function that councils have engaging with their communities, to business and service continuity planning of community and Disability Services, and individual person centred planning of people in their communities, including people with disability and other high risk groups, then councils will learn quite readily what those extra support needs are.

And councils can feed that information into emergency planning processes at the local level of council.  When local councils have that information in their emergency management plans or disaster management plans, it means that they know what supports they’re going to need in a disaster and what’s going to overwhelm local councils and, uh, their resources.  And so how are they going to rely on regional and state and perhaps national level support in a disaster that might overwhelm their community.

On the far left of the diagram in the centre, um, I’ve outlined this distributed network of organisations of people with disability community and disability service providers and their connections to people with disability family and carers in the community.  And I want to point out that this is not an easy task for councils, they have to find out who is providing those services in the community and in the current situation of how services and supports are provided, that can be a very complex challenge for councils to understand.

So, going back to their community, interagency and their disability, inclusion access roles, those are fundamental ways that local councils can connect in to who are the people in their community, and where are the disability representatives that they might rely on for some of that support, and some of that information that they need to make a better profile and a better risk assessment, and more helpful and responsive emergency management plans that include the extra support needs of people with disability and emergencies.

Disabled people’s organisations play a really important role.  On the slides I have the words representation, meaningful participation, support and advocacy.  People centred approaches have been embedded into the Sendai framework for disaster risk reduction, but the Sendai framework has not told us how to enact those people centred approaches, but disabled people’s organisations know how to enact those approaches and they can be relied on to support and represent a wide range of people with disability and a wide range of support needs in disaster situations.

They’re networked to people with disability and have information about those support needs that emergency managers and emergency planners do not regularly have access to.  So, it’s really critical that we partner with disabled people’s organisations, both our peak organizations, but also the local organizations who know their members in the community as a fundamental way of collaborating at the pre planning stage to gather information that’s needed to ensure everyone’s prepared, everyone’s aware, and that we have responsive plans in place that are going to support people when a disaster actually strikes.

So, the key messages I want to get across today are that people with disability have fewer choices and opportunities to access and use risk information and preparedness resources.  This affects their ability to plan effectively, and in turn, it affects the actions that they take that perpetuates inequity in emergency situations.

To fulfil the rights and protections that people with disability emergency planners need better understanding backed by evidence about what the extra support needs are, and how those should be resourced, organised and delivered in an emergency context.  Disability representation must be integrated at all levels of emergency management arrangements in order to fulfil those rights.

Effective institutions with supportive attitudes and mechanisms are needed to ensure meaningful representation and participation of people with disability.  This requires the development of legitimate roles for people with disability and gathering data, about the diversity of their support needs.  Using that information to ensure those support needs are at the centre of emergency management and disaster recovery planning.  Disability inclusive disaster risk reduction requires coordinated cross sector collaboration.

It involves multiple stakeholders that must work together with people with disability to identify and remove barriers to safety and wellbeing before during and after a disaster.  And person centred capability approaches must inform the development of disability inclusion in disaster risk reduction, because the path to full and meaningful participation cannot be achieved without challenging the social discrimination, the marginalisation and institutional neglect experienced by people with disability.

And I’ll end with this thought, if we’re, if we’re trying to move beyond a vulnerability approach to disability inclusion and disaster risk reduction and emergency planning.  We need to be thinking about capability.  Capability really is about providing the resources that people need to manage their extra supports or to support their planning in the first place.  But it also is about having the enabling factors.  And the combination of these two things are what support safety and wellbeing for people with disability and emergencies.

So, what are those enabling factors?  Um, these are the recommendations that we’re putting forward in the issues paper.  These enablers really are about representation, co-design, access in support, capacity, development, and responsibility.  So, I’ll briefly name each of those, and perhaps then we can open it up for, uh, discussion and questions.

The first recommendation is to build nationally consistent standards for including disability representation into all emergency management arrangements at all levels of government.  Recommendation number two, actively engage with people with disability in research to co-design tools, and those tools need to be about gathering data and evidence on the support needs of people with disability and emergencies.  Those tools need to be about planning for how extra supports will be resourced, supported and managed in a disaster.  And those tools need to also consider how we’ll evaluate the impact of extra supports on the safety and well-being of people with disability in emergencies.

Recommendation three, provide resources, funding support and advocacy where it’s needed for people with disability so that they can self-assess their risks and tailor emergency preparedness to their support needs and situations.  It’s one thing to have the person centred emergency preparedness resources and toolkit.  And it’s another thing to ensure that people know about those resources, have access to them and have support to make a plan.

And I think moving forward, those are some things we need to consider about how we’re going to utilise multiple stakeholders to ensure those supports and resources are meeting the needs and connecting with people with disability and the local level of community.

Recommendation four. I spoke quite a lot about the important role and function of community and district service providers, and also about their absence from emergency planning processes, particularly, uh, before disaster strikes.  We need to develop nationally consistent approach to capacity development for service providers in both person centred emergency preparedness and in service continuity planning, because it’s those two things that work together in synergy that will support people to be safe before, during and after a disaster.

And recommendation five.  We need to provide explicit policy guidance on who takes responsibility for the extra support needs of people with disability in emergency situations?  How that support should be organised before, during and after disasters?  And how will the responsibilities of different stakeholders be guided, and outcomes measured?

Thank you.

Melissa Hale:
Thank you very much, Michelle, that was really useful and particularly timely with Melbourne struggling throughout fourth lockdown.  And I think before we go to questions, the first thing I would like to highlight that the slides and recording of this session will be available after this on the DARU website as usual.  There is so much to take in.  And Michelle is currently finalising the issues paper.  And when it’s complete, it’s over to you the advocacy sector to use as an advocacy tool to create change.

So, as soon as it’s available, it will be public and will be available to you to use this.  So, we’ve got time for two questions.  So, we’ll go to question and answers now.  So, Melbourne is currently in its fourth lockdown and New South Wales is looking shaky at the moment, but given this has happened a few times now.  You would expect, I’ll just look at the bigger question.  You would expect that something had improved.  Have you seen any improvement over our response as a society as we learn to battle through Covid?

Michelle Villeneuve:
Well, you know, I think Anne Kavanagh’s research on what’s happened in the space of service providers, and the response has been telling and the work that’s happened at national and state levels has been really helpful in terms of maybe the word “Finally” mobilising responses, uh, to the needs of people with disability in the Covid, uh, situation.  But you know, in our individual work with people with disability during Covid, um, they were saying, uh, that it’s really the ultimate test of your shelter and place plan.

And the biggest challenge for them is, has not so much been the sheltering in place part, but the accesses to the services and supports, as I mentioned in the issue paper that they didn’t have any control over.  And I think the challenge there is in that pre planning process when it comes to the inter connectedness between people with disability, and the services that support them in the community, whether that’s specialist disability services, mainstream disability services, or just access to your local supermarket, and businesses for the supplies that you need to live every day.

I think that is the pre planning challenge that we have.  And those businesses and community organisations need to be thinking about how they’re going to support and continue services for people with disability in times of uncertainty, such as this.

Melissa Hale:
Yeah.  Yeah.  Great.  And the last question we’ve got is a long one.  So, I recently posed a question to the mayor of a regional town about their emergency management planning for people with disability in the region.  The response was along the lines of, “We’ll leave that to the CFA, they are the experts in might need to happen.”  What would you recommend that needs to change in that response to be a town that that person centred planning in a best practiced way?

Michelle Villeneuve:
You know, I think this comes down to recommendation five in the issues paper, and in the issues paper, I elaborate in a lot more detail on each of the recommendations and talk quite a lot about whose responsibility and how we might consider the different roles that people would play.  When I look at your question, I think automatically that one of the challenges is that we want to keep shifting responsibility to someone else.  And if I’ve heard once, I’ve heard it a million times over that in all of the reviews both the recent Covid reviews, but a long history of bushfire reviews in Australian communities, this constant issue of people with disability and other high risk groups continuing to be overlooked.

And the phrase that I hear over and over again is okay, we need to put it over here in the “Too hard basket.”  What I hear now though, when we work directly with councils and bring person centred emergency planning toolkits and resources to council and start to talk about their role as leaders, their role as support and their role as coordinators in their community, mobilising the network of community based services and supports and including the businesses in their care community, then it shifts the way that councils play a role in this space.

And it gives them It gives them an opportunity to really to use the channels the committee’s and the networks that they actually already have in place within councils.  But look at those in new ways of gathering information and channelling that back into emergency preparedness planning.  I suppose the other thing that often worries me about local councils is that some councils are more resources than other councils.

And I think we have to recognise that some of these recommendations will actually burden local councils more than others.  And I think councils need to think about and local council associations need to think about how to distribute that support across many council areas, so that all people with disabilities are included in in these planning processes.  And the other thing that worries me about councils is the potential to silo the responsibilities even within council.

So, we could silo those responsibilities into the community engagement roles and functions of council.  But we actually need to make sure those rules are connected deeply and within the emergency planning process.  So, the information we know and learn about our communities is fully integrated into emergency planning processes.

Melissa Hale:
It really does require that whole community shift in thinking about how we plan for these things and how we can do things differently and do things better as a society.  And it requires really a shift in power, and a shift in thinking about how we use that power as a community.  Thank you very much, Michelle, we are really, really looking forward to the issues paper, and, um, being able to circulate it to our advocates and for them to take it forward and hopefully creating real change.  So, thank you very much of your time today.

Michelle Villeneuve:
Thanks, Melissa. It’s a great opportunity.  And I really look forward to hearing feedback on the issues paper and to let everyone know that also an easy read version is well underway and will be out soon too.

Melissa Hale:
Great, thank you.   So, everybody, we have come to a close to our first session of the series. Thank you, Michelle for her time to bring this presentation to us all today.  A very important topic.  Thank you to the online interpreters in captioning, captioners for their hard work today.   Show Division for bringing this production to you today.  Have a wonderful week everyone and we’ll see you next time.

Thursday 3rd June, 2021

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