Disability inclusive disaster preparedness

This session was part of the Disability and Disaster Resilience Forum held online on 27 august 2020.


Overview

Emergency management is complicated and is usually divided into planning, response and recovery. The planning phase is crucial in order to identify the risks, who is more vulnerable to those risks and develop a plan of action for when the disaster strikes to stay safe.

Associate Professor Michelle Villeneuve, Centre for Disability Research and Policy, University of Sydney, led the DISABILITY INCLUSIVE DISASTER PREPAREDNESS IN NSW project. She outlines the key findings and steps to making a disaster management plan that is truly inclusive of people with disability.

 

 

Scroll to the bottom of this post for links to the resources mentioned in this presentation.

Transcript & Audio

 

MELISSA HALE:
Emergency management is complicated and is usually divided into planning, response and recovery.  The planning phase is crucial in order to identify the risk, who is most vulnerable to those risks and develop a plan of action if disaster strikes.  Whole conferences have dedicated themselves to thinking about these things.

It might be the local solution that are inclusive of people with disability are what really works.  Michelle Villenueve has led the disability inclusive disaster preparedness in New South Wales project.  She will provide key findings and steps to making a disaster management plan that’s inclusive of people with disability.  Please welcome Michelle Villenueve.

MICHELLE VILLENEUVE:
Thank you very much for that introduction Melissa and thank you for having me today.  I really appreciate it.  I’d like to recognise that I’m calling into you from the land of the gadigal people of the Eora Nation and I’d like to pay my respects to Aboriginal people and elders past present and future emerging leaders as well.

Today I have chosen to speak very specifically about person centred emergency preparedness and a peer leadership program we’ve been engaging in in Queensland.  Before I do so, I really want to put this program of research into context for everyone.

We’ve been conducting research in partnership with communities for a number of years now.  On the slide you will see a timeline on the left which actually shows visually the trajectory of our research from 2013 when we started this work in Indonesia all the way through the number of projects we’ve been engaged in.  I think there’s about nine projects on the screen, that’s just a flavour of the work we’ve been doing in this space.

On the right hand of the slide, you see pictures of people with disability, emergency managers, community service, health care providers talking together about what it means to be inclusive of people with disability.  That’s what DIDO is all about.  It’s about making sure the voices, the perspectives and the needs of people with disability are considered.

It’s not only about making sure they’re considered,  it’s about making sure they’re responded to and acted on.  This program of research is actually about connecting the different sectors that have a responsibility in keeping people safe together with developing capacity for us as individuals and the service providers who we work with to support and help keep each other safe.

I wanted to say that this snapshot of the work we’re doing in Queensland is just one illustration of the way we’ve been working.  I hope that will maybe inspire innovation in the different communities in which you work.  And increase perhaps some motivation to knock on the door of someone from another sector, maybe you have reached out and worked with them before to be able to engage in conversations about disasters.

The slide here just shows the scope and the scale of the partners with which we work and I want to reinforce that the exciting thing behind the research that we do is that it doesn’t sit at the University it takes place in the community and it takes place with people.  I hope you’ll see through the project I explain today how that actually works.

The other thing I wanted to show you before we got started was this framework we built.  In Queensland, we started the project focusing in on bringing people with disability and their representatives together with community, disability, health care providers and local disaster managers.  We’re talking about the people at council, local councils who develop emergency and disaster management plans and engage with communities to keep their community safe.

We’re also talking about emergency service agencies who are on the ground and in the field keeping us safe particularly when there’s an emergency of some kind.  They have an important role in sharing information and making preparedness resources available but also reminding us what our different risks are.

The other thing I wanted to say about this framework is it takes an all hazards approach.  When we talk about inclusion in disastrous production, we’re talking about all hazards.  Ann earlier today talked about the pandemic, obviously we understand now that that is probably the single most emergency that we’re all at great risk for.  But there’s other emergencies we’re hugely at risk for.

House fire for example is something we all need to consider and of course the last summer has really helped fuel our understanding, no pun intended of the critical impact that bushfire emergencies can have.  Floods, cyclones, east coast lows and other challenges to our everyday living can come about because of natural hazards that can provoke an emergency.

The framework we built through that community engagement was to look at what are the roles of the individual stakeholder groups in this process and how do we come together to share what we each know and do and bring that together to more effective inclusive disastrous production practices.  This framework and the whole toolkit is available on our website and I’ll show you later where you can find that information.

What I want to zero in on today is the role that people with disability can have and how that might work.  The framework identified short-term medium term and long-term outcomes.  In the short term, we’re looking to increase, the capacity of people with disability to self-assess.  What’s my risk for natural hazards, how prepared am I right now, what are my strengths and what are my support needs.  Then use that self-assessment to make a formal emergency preparedness plan that’s tailored very specifically not only to my support needs but the resources and the people who are likely to be near me when a disaster strikes.  That’s usually family, friends, neighbours and it’s not often the emergency services who are the first responders when that initial emergency strikes.  We really need to think about who is in our network.

The ultimate long-term goal is that by engaging in this process and making a plan that people with disability realise their self-reliance and also their planned reliance on others.  Going back to the framework, I showed you this doesn’t sit by itself.  It’s one part of the larger puzzle and larger responsibility  that we all have to share in this process.

We used a couple of tools the person centred emergency preparedness tool, which you may be becoming familiar with, I hope you are.  Which puts emergency preparedness down for people with disability into these eight domains or eight elements.  Things like social connectedness, how I manage my health, do I have assisted technology and how do I manage assisted technology.  My personal support and how and where I get support from, assistance animals.  How I communicate and my living situation.

The capability wheel is what we actually call this.  We call it the capability wheel because these are all things we need to consider when taking care of our safety and the additional things that people with disability need to consider and pre-plan for.  We call them capabilities because it’s a combination of my strengths, my resources and my support needs.  We need to put that piece of the puzzle together and make our plans fit to our specific and unique needs.

Personal centred emergency preparedness happens as a process.  Emergency preparedness for all of us really needs to be a process, we can’t do it all in one go.

The person centred tools that we develop really focus on it being a conversation, a conversation in four parts.  Identifying those strengths and support needs, learning about your local hazard risk and connecting in with your local emergency managers to understand the steps you can take in your community.  Planning very specifically how you’re going to manage that given your own unique support needs and communicating them with people in your support network.

That’s really important because needs (audio cuts out] people with disability have significant gaps that may require support.  Ultimately (audio cuts out] planning based on this person’s needs, optimise self-reliance and (audio cuts out] to address any gaps in your plan through collaboration.

We also used, systems peer support program.  (audio cuts out] disability support network they provide support in community across community, must be a group of people with disabilities having a conversation about preparedness and on the right you’ll see a map.  The 25 peer leaders from the Queensland Disability Network who provide peer support across Queensland in the community and they normally do this through peer support and sometimes-through individual support and mentoring in the community.

Now we wanted to combine person centred emergency preparedness and this peer support program.  This model and this very effective program that’s already happening in Queensland.  We needed to find a way to nit these two things together and introduce a new skill to the peer leaders in the program.

What we did was consider transformational leadership as a way to identify what we really want to see these peer leaders doing.  We wanted them to act as role models for emergency preparedness and personal planning.

We wanted them to have and hold high expectations and inspire optimism about what is possible for people with disability in making their own plan and navigating some of the challenges and barriers through collaboration in community.  We needed to make sure people had an acute understanding of individual needs.

We didn’t want them to just share resources and say here you go; we wanted them to go a step further, begin to think about what are the support needs of the people in my peer group, of the people I support.  And have and expand on conversations so they could share information in more effective ways and provide that natural, social and emotional support to each other.

We also wanted people with disability to use the skill we know they have tenfold and that is through skills as advocates.  That was really important with the Queenslanders with disability peer support program because these 25 peers we were working with had already developed incredible capacity as advocates for disability rights in their community.

What we now wanted to do was add on emergency preparedness and think about what do those rights mean in the context of emergency preparedness planning, responding during a disaster and recovering in the long term.  That’s what’s created the person centred emergency preparedness peer leadership program.

On this slide I won’t go in great detail but I wanted to relay the point how we work is cyclical and iterative.  We work through a number of actions to co-design products and tools; we try them out and test them.  We monitor and evaluate how it’s going, sometimes change things up in the process if something is not working and if something is going really well we try and find ways to amplify that.  That’s what this diagram is trying to show.

I’ll just tell you a few examples of how that looks in practice.  In practice on this slide, you’ll see a number of people, these are our peer leaders and this is at the first training.  You’ll notice at the front or sitting in the seats are people holding a microphone.  Whose holding the microphone, it’s our peers with disability and that’s because the training itself was co-designed and it was co-led and delivered by this peer group.

That took a little bit of planning and initiative on our part and bringing together not only people with disability with the lived experience of disability but also finding and resourcing people with disability who are also experts in emergency preparedness and beginning to share information together about how they can operate with their peer groups in the community.

The other thing we strategically do in the work we undertake is make sure we connect people with disability into the local emergency managers.  An example was at this workshop where we were training the peer leaders in person centred emergency preparedness.

We made sure we bought state level emergency managers and local councils who do disaster resilience work at the local community to share what they know about local hazard risk and also to connect them into the resources these peer leaders will need when they go back into communities and connect them back in with their local emergency managers and look at the right websites for the right state level information and resources and connecting with the get ready tools and programs that are available in the community.

This is really important.  People with disability as Melissa has talked about already today, have been excluded entirely from the disaster management process.  Part of our method and our madness is to make sure we’re bringing emergency managers together with people with disability in dialogue.  The dialogue where the rich learning happens and we’re seeing responsiveness on both sides.

People with disabilities learn about what is needed to make a plan, what can be realistic and what is maybe unrealistic and they need to have contingencies for.  At the same time emergency managers are learning a heck of a lot more about how to make the resources accessible, what people with disabilities can do and what they need support for through the process.

I’d like to show you a little video to give you a flavour of what that’s like from the perspective of one of our peer leaders

VIDEO

“I’m Nadia I’ve been a convenor for about a year.  Before that I was coming along to the group for about two years.  I’ve become a lot more confident as I’ve come along and now I’m able to help as co-convenor which has been a really exciting  opportunity for me.

When we were asked if we wanted to participate in person centred emergency preparedness I thought that sounds really heavy but I’ll give it a go and I’ve come in here today and have the opposite experience.  I’m very excited because I see so much strength in my group and I think each person in my group has very different needs but also very different strengths.

What are some of the things you might not be aware of but areas in which you’re already ready for a disaster, what are some of the skills you already have, where are you starting at and what are some ways in which we as a peer support group can help to build you up.

MICHELLE VILLENEUVE:
That is an example both of what our peers are learning as a result of engaging in person centred emergency preparedness and taking that out to their peer groups but it’s also an example of our products in progress.

What you just saw is a draft clip of a weird building together with our peer leaders that at the end of this project we hope will show not only their own preparedness planning process that they’ve gone through but also the roles they’ve taken on as peer leaders in their communities and how that’s had an impact with their peers.

I was really pleased to be able to show you a small glimpse of that video.  At the same time I recognise in seeing a very tiny edit you’re not seeing closed captions or Auslan interpreted, thanks to our Auslan interpreter here today that helped rush through that.  Those final products will have all those accessibility features once we’ve finished.

Nadia shared with us on that video that the process is overwhelming, messy and confronting and that’s a message we hear over and over and over again from people with disability when they start engaging in person centred emergency preparedness.  I don’t won’t to undermine that is a fact for people with disability.  The more complex support needs you have the more overwhelming that process will be.

It’s really important to also share the process from our peer leaders that it can be done and it really must be undertaken.  That speaks quite a lot of transformation of leadership.  We need to champion and have role models and give some worked out examples of how that actually looks in practice.

We will be able to learn through the process how important it is for people to have a healthy dose of realistic optimism.  We are not going to have the perfect plan for everyone tomorrow, for people with disability in all of Australia to manage every disaster.  That would not be realistic but we can stop and self-assess where we’re at today.

I’ve thought about it but I haven’t really taken any actions honestly or I’ve started to get organised.  I’ve thought about my documents and really important photos but I really haven’t taken concrete actions I need to take particularly those that are disability specific.  This is where the training becomes really important.  I suppose differentiates some of the training that might happen in the general community.

Most training and capacity development and community engagement around disaster risk production is generalised to everybody in the population.  This training and this toolkit is specific to the support needs of people with disability.  So when we’re looking at progressing people along this continuum we would like to see that their plans are disability specific as our peer leaders would say, unique to their support needs and communicated with their support network.

It is really important for our peers and the people they support to understand that it can work.  Those of you who are following the disability royal commission last week would have seen Ricky Buchanan speak about how her plan worked.  I have also been a part of that preparedness planning process and some of the conversations that went in to supporting Ricky to move along that trajectory of her own preparedness planning.

The other thing about our project was that COVID-19 put our training absolutely to the test.  One of our co-educators said I know COVID is going to be a game changer but it’s the ultimate test of our shelter and place plans and we need to use this opportunity.

We actually as part of this messy process of co-designing tools took time out in March to do not the all hazards toolkit planning and develop a COVID specific planning guide and we jumped forward with them sharing that throughout their peer support groups and tailoring that plan.  It’s all available throughout all of Australia.  The guide is available on the website and again I’ll show you on the last slide a link that will take you to other resources you can use and download.

The last messages I suppose I want to leave you with is there’s lots of other facilitators in this process and throughout our learnings we’re honing in on what are the key ingredients of a support leadership support program, how do we pack them into that program and produce resources other people can use and programs ideally peer leadership programs we hope will pop up across Australia by other disability organisations who already have peer leadership programs and are perhaps ready to embrace person centred emergency preparedness as part of that trajectory of the peer support plans.

We know the process needs to be strength based and capability focused.  What our peer leaders have benefited from most is the stories, the sharing together, working out some of the challenges that each of them experience but perhaps in a slightly different way and having the worked out understanding of that’s what worked for Toni, I could probably try it if I do these things.  That kind of support is really what motivates and propels people around that to be more prepared.

The other thing that’s really important is having risks that break it down.  The person centred framework I showed you at the beginning that breaks it into eight elements is one thing.  Another thing is a workbook we’ve produced with these peer leaders also available on our website which breaks it down into more conversations.

We’ve been intentional by saying this is not necessarily a document you fill out, although there is lots of room for written reflect in the workbook but it’s primarily a conversation guide.  We advocate that people have emergency preparedness conversations in conversation with other people.

I guess the last thing I want to say is how critical it is for people with disabilities to have a leadership role in this space.  The critical importance that’s been, I know from our research teams perspective in having champions on the ground who really understand the lived experience of disability and can really get behind emergency preparedness and adding that to their repertoire from an advocacy perspective and sharing that in the community.

The exciting part between what they’re doing and the other areas, stake holders involved in this process is we’re getting that dialogue with local councils; we’re getting fireworks happening amongst service providers saying we can share these resources through the disability organisation I work for and so on.  I think that’s how we’re going to see preparedness grow and safety and resilience improve.

I’m just sharing the website where you can go and download these resources and have a look are our other projects, look in a bit more detail of some of the other things we’ve been doing in New South Wales where some of this work was initiated.  Some of the things that are up and coming in and around community.

I do want to draw attention to our person centred project page to resources we’ve recently developed for people from culturally and linguistically diverse communities.  We’ve tried our best to do video-based resources, and user-friendly books that help people instead of academic papers and thick resources that you need to wade through.  We hope you’ll enjoy looking at those resources.

I just want to finally acknowledge the support from our funders.  The project I talked about today it’s currently funded by the Queensland Government through the Queensland disaster resilience fund and the Department of Community, Disability Services and Seniors.  It’s led by the University of Sydney, my team researchers but can only happen in partnership, which happens with the Queensland Disability Network and the community services industry alliance.

I do want to acknowledge the work that went on before that.  I was leading a project called Prepare in New South Wales, which produced these person centred tools, and the joint state and commonwealth natural disaster resilience program funded that.  Large cohort of multiple stakeholders from New South Wales have been a long part of this journey toward improving preparedness.  Of course I want to thank the Queensland disability leaders themselves and staff who are supporting the project right now.  I’ll leave it there.

MELISSA HALE:
Thank you very much Michelle, that was really really insightful and it’s very clear that this project has thought of all the things people need to think about in terms of any type of disaster that comes across in their lives.  It’s really important to be prepared.

Because we’re running out of time we have some questions, I will jump-start you to the questions.  Can I have the first question?

QUESTION:
Connecting up different stakeholders takes time persistence and energy how do we get all the parts motivated?  Experience with many people with disability is not to be listened to or have our needs considered how do we get planners interested?

MICHELLE VILLENEUVE:
I think my gut response to this question although if I reflect on it for the next 24 hours I might have more ideas but I think my gut reaction is from a community development perspective, mobilise.  How do people with disability mobilise best through their disability organisations and the support they receive because when we mobilise together as a group our voices are amplified through an organisation.

I think part of the reason I wanted to share the particular example of working with the Queensland Disability Network is they’ve got a particular skill I think.  They’ve got a skill at amplifying strategies, issues and ideas upward toward policy and decision making and advocating on that level but they also have a deep connection to their members and what their members needs are across all of Queensland.  I think unique combination of those skills within a disability organisation.

The next logical might be the other issues surrounding that continuing the funding and keeping the supports going for organisations.  I really think it’s that kind of persistence and energy.

The one thing I will add to that is the strength of our partnership.  Our community organisations bring that nose to the ground that everyday reality of living in their local communities and what needs to happen.  And our academic team brings principles of evaluation and methodic approaches to help systematically gather and share those resources and information and develop the tools.

I think it’s a lovely marriage of the skill sets to work together to make sure we can make resources and actions available to everyone.

MELISSA HALE:
I suppose the disasters of 2020 has brought this to the forefront of everyone’s mind anyway considering how unprepared we all were for this.  The last question please.

QUESTION:
Should disaster planning be included in NDIS plans?

MICHELLE VILLENEUVE:
That’s the million-dollar question.  Could it be included in an NDIS plan or should people have the flexibility in their NDIS plan if they need support to make a plan?

I answer that question with caution only because not everyone has an NDIS plan, not everyone is eligible for the NDIS, not everyone receives NDIS services.  I think yes planning should be part of everyday planning because it’s a part of our mainstream inclusion into all of society.  People with disability have the rights just like any other citizen to access mainstream emergency management information and resources and tailor them to their unique support needs.

That’s essentially the role of support programs like the NDIS.  I answer it with caution because that would leave a lot of people out.  It really means we need to think about this in the health care system, in the aged care system.  We need to think about people who aren’t on any of those programs.

Our approach to disaster planning in a multi-pronged way in communities is to make sure it’s coming from every possible angle.

I would suggest one of the things that’s been a real strength of our partnerships and we’re beginning to see it flourish at this point is our partnerships with local councils.  Local councils have incredible roles and incredible opportunities to connect in not only with NDIS providers but people working in homelessness and people who are dealing with social issues that people are experiencing and collectively they can harness a lot of opportunity to communicate about these resources and get the messages out to the community.

Yes, I agree and I think it also needs to come in a multi-pronged way from a number of different sources.

MELISSA HALE:
I agree with that, thank you very much Michelle.  I really appreciate you taking the time out of your busy day to speak to us all today.  It’s really much appreciated and thank you for all the work you have done.

MICHELLE VILLENEUVE:
It’s an absolute pleasure, thanks so much for having me I appreciate it.

MELISSA HALE:
Thank you, okay everybody we’re about to head off to a stretch break.  You can dance in your spaces again and just a word that if you would like to ask questions please put it in the Q&A box in Zoom not in the chat box so I can make sure your question is answered live.

Enjoy your stretch break; see you in a few minutes.

Download slideshow presentation Disability Inclusive Disaster Risk Reduction (off-site)Person Centred Emergency Preparedness (off-site)
Author:
DARU

Date published:
Thu 27th Aug, 2020