Category: Policy and Policy Development

Crisis planning by co-design

Floods and fires are a regular occurrence in Australia. However, they are happening more frequently and with more intensity. While there are standards for building evacuations and fire risk management, these were developed without thought for all citizens. And when people need to evacuate to a communal place of safety, there is no guarantee it will be accessible. Crisis planning requires input from all stakeholders and that includes community members.

Researchers in Sweden ran a workshop with stakeholders on crisis planning. One idea was to have practise events so that community members know where to go and what to do.

Fire fighters dressed in protective gear with oxygen tanks run towards the smoke.

Fire drills are commonplace in office blocks and institutions for both the occupants and emergency service personnel. Perhaps community members need these type of events to familiarise themselves with evacuation procedures and safe places.

Distributing information or brochures to households is not enough. People need to physically go through the process of getting to important places. They also need to check out places like shelters to ensure they are appropriate for their needs. People also need to know how to handle equipment they wouldn’t normally use. Also, information via the written word assumes everyone can read and comprehend the information.

A co-design, participatory process

The workshop generated collaboration in addressing the crisis scenario presented to the participants. The lived experience of people with disability was a good learning experience for disaster management staff. Maintaining a home preparedness kit is challenging for some people when some medicines are restricted. That means you can’t order in advance to keep a ‘spare’ set.

Although staff had worked previously with organisations to produce written materials, they could see that some people fall between the cracks. People who get by reasonably well and not connected to community services could be missed. Although they are managing with day to day activities they may need support in a crisis.

In summary, the co-design methods allowed for more nuanced information to emerge. Evacuation and rescue solutions are context dependent because each locality is different.

The title of the article is, Enhancing Inclusive Crisis Planning: Insights from a Disability-Inclusive Scenario Workshop. It’s open access so you can download the PDF.

Abstract

In response to escalating disasters, inclusive crisis planning is crucial. This study examines a specialised workshop that engaged people with disabilities in crisis planning, focusing on a simulated flood scenario.

Stakeholders from disability organizations and the local municipality collaborated, including eight crisis communicators and thirteen individuals with disabilities. The workshop facilitated knowledge exchange and surfaced disability-specific issues.

While successful in raising awareness, challenges arose in relaying detailed perspectives, emphasizing the need for nuanced communication. Locally relevant scenarios strengthened the workshop’s impact.

The findings stress the importance of early involvement of individuals with disabilities in crisis planning and offer insights for researchers and policymakers. This research contributes to enhancing inclusivity in crisis planning and informs future disaster risk reduction.

Vulnerable citizens in floods and fires

While there are standards for building evacuations and fire risk management, these were developed without thought for vulnerable citizens. And when people need to evacuate to a communal place of safety, there is no guarantee it will be accessible.

Residents of the Northern Rivers area of New South Wales are not new to flood events. But the floods are getting worse. A major flood event occurred previously in 2017 and four researchers decided to explore the experiences of people with disability.

They found people with disability and carers are more likely than others to be affected and displaced. Their needs are more immediate and urgent than most, and their mental health is more likely to be compromised.

Road Closed signs and a barrier of a road that reaches down to a river in flood.

Their findings show the profound impact and systematic neglect experienced by people with disability and their carers. A longer term recovery period is required for people with disability with tailored supports. Consequently, people with disability should be included in flood preparations and recovery efforts.

The title of the article is, Exposure to risk and experiences of river flooding for people with disability and carers in rural Australia: a cross sectional survey. It’s not a very accessible document as the format is in two columns.

Fire safety

The NDIS aims to support people to live independently in a home designed around their disability. This usually means a step free entry and modified bathroom designs. However, little, if any, thought is given to the design of fire safety and safe evacuation in an emergency.

“Fire safety systems must be considered as a total package of risk management, equipment, maintenance, training and fire and evacuation drills. …Where disabled or immobile persons are concerned, the importance of the total package cannot be underestimated.”

house fire photo taken at night time.

Some NDIS participants will need extra support to prepare for and react in an emergency. Hank Van Ravenstein outlines the role of the NDIS in his paper, Fire Safety and the National Disability Insurance Scheme. The first part relates the history of the NDIS followed by technical considerations for safety. He argues that the National Construction Code regulations don’t fully address or reflect the needs and risk behaviours of NDIS participants.

If we are to take a universal design approach, if the fire safety regulations aren’t sufficient for people with disability, are they sufficient for everyone?

Bushfire safety

As cities grow and become more compact, some citizens feel the need to “go bush”. This usually means finding a forest haven amongst the trees away from urban living. Then there are those who have always lived in the bush and wouldn’t live anywhere else. But bush living is risky and can be costly in terms of lives and property. It is particularly risky for people with disability and consequently, a different risk assessment process is needed.

Despite fire and rescue authorities encouraging people to prepare for bushfires (and floods), many leave it too late. Some are unable to understand the instructions, or unable to carry them out. A paper by Bennett and Van Ravenstein spells out all the technicalities of fire prevention and control.

A nighttime view of a major bushfire. The bright orange and red glow of the fire is reaching into the tops of the trees.

They argue for a risk assessment approach to existing and proposed buildings for vulnerable persons. The aim of their method is to provide a consistent basis for assessment. The title of their paper is Fire Safety Management of Vulnerable Persons in Bushfire Prone areas.

There is an related paper on vertical evacuation of vulnerable persons in buildings.

Reporting disability issues in the media

Media Diversity Australia has updated their handbook for reporting on disability issues in the media. The 2024 edition is written for both journalists and marketing professionals. 

A key point for journalists and marketing professionals is the scarcity of appropriate stock images of people with disability and older people. For example, at Getty Images, the visuals downloaded by Australian businesses and media in 2020 focused on white people with physical disability. 

This is a well researched document that covers more than the usual topics. It also has specific “how to” guides for interviewing people with different disabilities. The Disability Reporting Handbook is a good companion to the ABC guide to disability content – see below. 

The Handbook covers the usual introductions to disability and golden rules about language and images. Infographics for statistics provide useful information about disability in Australia. The handbook also covers:

      • Intersectionality with disability in relation to women, First Nations people, people from linguistically diverse backgrounds and LGBTQIA+ communities. 
      • Violence and disability, including support services available.
      • How-to guides for interviewing people with disability covering physical, sensory, cognitive, psychosocial and neurodiverse conditions. 
      • Images and audio
      • Marketing and advertising 

 “The biggest barrier to full participation in the community for people with disability is attitude. Most Australian’s with disability experience the soft bigotry of low expectations”. (Graeme Innes, former Disability Discrimination Commissioner)

The  contributors have varied backgrounds in media and journalism. They consulted widely in the development of this comprehensive publication. Media Diversity Australia is a not for profit organisation that believes the media should reflect the cultural diversity of Australia. They have another publication, Who Gets to Tell Australian Stories?  

ABC guide to disability content

ABC journalist Nas Campanella. ABC guide to disability content.
ABC Journalist Nas Campanella

Australia’s public broadcaster, the ABC, has a guide to disability content. The guide covers appropriate behaviour and language in reporting and portraying disability content. It’s applicable to all ABC platforms including social media. It’s a good guide for all journalism and anyone new to interacting with people with disability.

The title of the guide is, Reporting and Portraying Disability in ABC Content. Arranging and conducting interviews, asking questions, language and terminology are all covered. Many journalists are up to date with their language now, but images are still a problem. And there is still a tendency to place people with disability into a victim or a hero role. 

The information about arranging and conducting interviews includes checking on any assistance or support they might need. Saying someone is inspirational is not appropriate. So check facts and don’t run with assumptions.

Photographers and camera operators need similar information to avoid showing pitying pictures or focusing on assistive equipment. Wheelchairs are not the sum total of people with disability.

Images of disability in journalism

The guide gives the following advice: 

    • Avoid portraying individuals as objects of pity. For example, photograph a person using a wheelchair at their level, not looking down on them. Powerful, positive reinforcing images are generally preferred, depending on the editorial context.
    • Only show the person’s disability if it is critical to the story.
    • Avoid focusing on equipment unless that is the focus of the story. Avoid gratuitous cutaways of wheelchairs, canes, hearing aids and other devices.
    • Avoid having the talent’s carers or family in photos or video unless they are also part of the story. Show the talent as having autonomy over their own lives.
    • Avoid showing the person with disability as isolated from the community unless that is the focus of the story.
    • Avoid using stock images as the majority reinforce stereotypes of disability and are of poor quality.
    • Avoid using images of mobility aids, such as photos of wheelchairs, as a generic image for a story about disability.
    • Do consider using people with disabilities to illustrate stories that are not about disability, to show they are a regular part of the community.
    • Do aim for diversity in imagery of people with disabilities and include people culturally diverse backgrounds and gender diverse people also live with disability
    • Do show people with disabilities doing normal things, such as catching public transport or shopping, but avoid making it ‘inspiration porn’. It’s just life.
    • Do show people with disabilities in positions of power and authority.

Image from ABC News website

 

Legal documents favour visible disabilities

A man's hand is writing the word regulations in large script style writing.Norway has been following the underlying concepts of universal design for 25 years. This means they have a history of policy and activities to reflect upon. Previous papers have highlighted successes and where there is room for improvement. A new Norwegian study looks at universal design through a legislative lens and finds legal documents favour visible disabilities. 

In more recent years, people with invisible disabilities have raised their voices in the disability rights movement. However, their voices are yet to be incorporated into legislative documents. Historically, people with mobility and vision impairments led the way in disability rights. This means their needs were front of mind when legislation was formed. 

The Norwegian researchers wanted to find out if there is a “disability prestige” at play. This is where some disabilities count more than others. Or is it something as basic as just having your disability visible to others? The researchers concluded that visibility was more important to explain discrimination between groups. 

The Norwegian study can be generalised to many other countries. In Australia the Access to Premises Standard also favours people with mobility and vision impairments. 

The Norwegian researchers carried out their study in the context of transport. They discuss the wording of documents and how terms such as “reduced mobility” are interpreted. It can mean a person with a physical and/or a cognitive impairment. However, it is most often linked to movement of the body. 

Prestige versus visibility

In the Norwegian documents mobility impairments are mentioned more frequently than other disabilities. Vision impairments, also frequently mentioned, come in second. The researchers conclude that discrimination between disability types is mostly explained by the visibility of a disability.  

Why does this matter? Because when provision for other disabilities and long term health conditions are not mentioned in legal documents, businesses and services don’t provide them. 

The title is, How laws of universal design discriminate between different types of disabilities – Lessons learned from Norway.

Financial inclusion for all

Looking upwards to the gable of a federation building with the name Bank on it.Financial inclusion should be a top priority for policymakers keen to alleviate poverty. Five of the Sustainable Development Goals feature financial inclusion, including reducing gender based inequalities. Access to financial services is a human right but overlooked for people with disability. 

Financial services include banking, credit, insurance and financial advisors. Each of these should be readily available to everyone. A literature review identified five key barriers:

  1. People with disability have a lower demand for formal financial services than those without disability
  2. Banks do not expect or welcome customers with disability
  3. More appropriate technologies are needed to overcome communication barriers because communication technology (ICT) fails to meet the web content accessibility requirements 
  4. Financial services are not tailored to meet the needs of people with disability 
  5. The formal financial system requires accessible public infrastructure to include people with disability.

What are the solutions?

Multi-stakeholder collaboration to counter stigma and attitudinal barriers is the starting point. Financial education and accessible assistive technology and ICT is essential as well as the physical environment of financial institutions. 

The title of the research article is, Financial inclusion for people with disability: a scoping review. 

From the conclusion

Access to financial services is a human right that seems to have been overlooked for people with disability. The push for financial inclusion of people with disability is a matter of economic strategy as well as a moral imperative rooted in justice and equity.

The financial sector’s landscape, shaped by innovations in ICT, provides an unparalleled opportunity to bridge the financial divide faced by people with disability. However, it will take more than technological advancements to solve the problems.

True financial inclusion necessitates a paradigm shift in attitudes, policies, and strategies. Our findings underscore the urgency to redesign financial systems that are accessible to all and cognisant of the preferences and needs of people with disability.

Addressing the multiple dimensions of financial exclusion of people with disability requires a comprehensive, multifaceted approach, integrating attitudinal change, ICT accessibility, and a commitment to disability justice. There is an emphatic call for banks, policymakers, and society to converge their efforts.

From the abstract

Financial exclusion is a human rights issue affecting health equity. Evidence demonstrates that financial exclusion is exacerbated for people with disability and those in low- to middle-income countries. Barriers to financial access include limited demand for services, banking inadequacies in catering to people with disability, and insufficiently accessible information technologies (ICT) and infrastructure.

Recommendations include using ICT, digital innovation and multi-stakeholder collaboration to address the financial barriers experienced by people with disability. These efforts, rooted in social justice, aim to include people with disability as valued financial sector participants, promoting health and equity.

 

Go-along techniques inform design

There’s nothing like getting instant feedback as people negotiate the built environment. Go-along techniques inform design because they really get to the key points. Some of the exclusions are only obvious when pointed out and that’s valuable information.

The go-along technique is where researchers walk with the participant and observe the barriers they experience as they encounter them. The dialogue that ensues provides rich information about design – how to do it and how not to do it.  

Image taken from the research paper 

Researchers in Sweden used this method and found there is an ongoing multifaceted exclusion of citizens in the built environment. This is despite current building regulations. Also, it doesn’t meet the aim of inclusion and international conventions. 

However, there are opportunities to change this with knowledge about enablers in the built environment. The researchers point universal design as an important planning variable to bring about change.  

The research paper has a lot of excellent information, much of which planners and disability advocates hear anecdotally. This paper documents the issues well and in detail. 

The necessary enablers

Benches, or seating were the most mentioned during the go-along activities. These are a decisive factor for spending a day in the city centre. People would walk more if they could also sit. 

Access to public toilets was also critical. Finding them, having access, and in some cases, navigating payment systems all pose problems. Again, another factor in visiting the city. 

People who live outside the city centre need flexible mobility systems – public transport, plus being able to use a car and then parking the car. 

Lighting in public places, clear signage and orientation board were also important along with handrails in challenging environments. 

Planning process needs a re-think

The researchers argue that there is an urgent need to rethink the planning processes to account for human diversity. It’s essential to move away from notions of an ‘average’ person or the idea of normal.

There is a gap between what building regulations state as accessible and the the lived experience of accessibility (or inaccessibility).  As the researchers say,

 “The pointing out of the necessary enablers is important knowledge to achieve accessibility also in an overall, entire-city-perspective. The concept and practice of Universal Design is a key to pursuing such a development.”

The title of the research paper is, Is the City Planned and Built for me? Photos highlight some of the key issues experienced by participants. There is a lot of really good information in this paper. 

Disability messaging guide

The Commons Social Change Library has a new guide for disability messaging. The guide has tips based on research which shows effective ways of building public support. The document was led by a steering committee of people with disability and messaging experts.

The guide is supported by Disability Action Network Australia (DANA), Centre for Australian Progress and Common Cause Australia. Access via The Commons Social Change Library or download in PDF.

Website banner for the disability messaging guide. Dark blue background with white text surrounded by a narrow yellow border.

Key content

The guide begins with a note about language and why they prefer the term “disabled people”. The introduction covers the messaging principles such as the audience and speaking from the frame of experience. The overarching themes for talking about disability are self-determination and diversity. This is followed by the 7 top tips.

  1. Story structure
  2. Design Frame
  3. Strengths language
  4. Our story, not theirs
  5. Bring NDIS back to values and benefits
  6. Build empathy with human stories
  7. Show change is possible
People on a fun run with two older adults being pushed in wheelchairs.

The guide has good examples to explain concepts and how to change old messages into ones that are more attuned to self determination. One example is to talk about being “led by disabled people” rather than “a seat at the table”. The reasoning is to replace inclusion and tokenism with self determination.

Another example is making passive sentences active. Rather than talk about how disabled people experience discrimination, say who is discriminating. And people like to be presented with solutions rather than problems so focus on these. 

The title is By Us, For Us: Disability Messaging Guide.

Disability organisations as social participation

Clubs and societies bring together members with a shared interest which also provides a platform for social participation. The same can be said for disability organisations – with some differences. Disability organisations are a hub of social activity, political activism, and a resource of lived experience for planners. A paper from Sweden looks at this concept focusing on rural communities.

Researchers found that interviewees have extensive social lives and that disability organizations act as a platform for many social interactions.

Two women sit under trees in an outdoor cafe. One sitting on a bench seat at a table and the other is using her rollator or wheelie walker as a seat.

Sometimes acquiring a disability such as rheumatism, prompts people to join groups such as the rheumatism association. Some disabilities cause people to leave paid work so this gives them time to channel their energies into these civic organisations. But it doesn’t end there. Members of these organisations also provide valuable lived experience for local authorities in planning.

There are three dimensions to disability organisations: social participation, political action, and a resource of lived experience. Just on the basis of participation, disability organisations provide good value for their government funding.

Protesters at a disability access rally. A woman is sitting in a wheelchair holding a sign saying access for all. She is wearing a blue jacket and wearing sunglasses.

Disability organisations, and the disability sector as a whole, provide inclusive spaces in which to socialise. The strength of inclusive spaces is they facilitate participation on equal terms. On the other hand, disability-specific places are potentially more flexible and adapted to individual needs. Disability organisations are a form of a disability-specific space which form a base for recognition and a political voice.

Living rural with disability

Living with disability in rural areas is viewed as more of a problem than in urban areas. According to the researchers this is a simplification of how people relate to their environment. Rurality and disability are two different concepts which are not complicated when put together.

The article is titled, “I am a very active person”: Disability organizations as platforms for participation in rural Sweden. The link provides an extended abstract and the full paper is available via institutional access.

A rural road with homes on each side. The homes are painted dark red with white windows.

From the abstract

Disability organizations are places for social interactions and for the accumulation of knowledge about disabilities as lived experiences. They also form a platform for dialogues and political influence work in the local community.

Participation means being included in societal activities in a way that suits the individual’s capacities and ambitions. The role of the public sector also enables participation. That’s because, in Sweden, it supports disability organizations and opens up opportunities to influence local planning.

If more support is given and more disability-specific arenas are created, there will be more open arenas for possible participation. What counts as participation must begin with individuals’ own experiences and values of what they appreciate and need in their daily lives.

Co-designing social housing policy

Co-designing social housing policy is a relatively new concept in Australia, so it’s good to see tenants involved in policy development. New AHURI research tackles the issues amid the need for urgent reform of the housing sector. Tenant participation leads to benefits for all involved.

‘For policy co-design methods
to work well, there must be
respect and recognition of the
expertise of all participants
involved in the policy making
process…’

A new three storey housing development still has the chain link fencing around it. Social housing policy.

AHURI’s summary paper of the research acknowledges the role of champions within organisations who must lead the development of the design processes. Otherwise, they are not successful or sustainable. However, they require resources and support for these processes to succeed.

Attracting ‘representative’ tenants is difficult because those with the most complex challenges often cannot spare the time because they are in crisis. If participation programs are online or use written forms, only those who can read will be included.

What’s needed for successful co-design

Other important findings from the research include:

  1. A toolbox of participatory methods is needed for engagement across the diverse population who have varied needs for housing assistance.
An old wooden box with mental handles and clasp.

2. Recognition of expertise of frontline staff is an important but untapped source of potential policy expertise.

3. An ongoing commitment is necessary to resourcing, investing in, and training workforces, and building participant capability and supports for policy co-design. And an evaluation program to confirm what works well, under what conditions and for whom.

The title of the policy summary is, Including social housing tenant voice in policy leads to better outcomes.

The report’s executive summary, Social housing pathways by policy co-design: opportunities for tenant participation in system innovation in Australia has more. Or you can read the full report as well.

Information in an emergency

Getting information in an emergency can mean the different between life and death. Or at least the difference between feeling helpless and knowing what to do. But communication is a complex process and not everyone responds to the same methods. So what is accessible information? It’s information provided in different formats.

Easy Read and Easy English use pictures as well as words. These are good for the 44% of the population with a low level of literacy. Targeting this group means people with higher levels of literacy can also get the message. It’s universal design.

A blackboard with words: learn, language, adjectives, nouns, verbs, adverbs written in chalk

Other formats are braille and Auslan, and captioning for videos. The Disability Discrimination Act lists places and services that must not discriminate, but there is nothing specific about information methods. This is something that needs to be made clearer in the legislation. However, the Commonwealth and state governments have policies to cover the provision of information.

Accessible emergency and crisis information

Researchers found four things to improve crisis information.

  1. Accessible information providers, such as Easy Read professionals, are not experts in the subject at hand. They need support from experts such as doctors or police.
Black and white logo for easy read, has a tick and a open book

2. Accessible information providers need to stay up to date with changing details. Having one direct source is the best way to manage this.

3. Making high quality accessible information takes time and skill. It’s essential to have the capacity and capability ready to act – don’t wait for the crisis to happen.

4. Agencies need to be upskilled. Sometimes crisis information needs to be available immediately such as an evacuation order. Emergency services need more baseline skills to make this information themselves.

The title of the article from The Conversation is, Crisis communication saves lives – but people with disability often aren’t given the message. The call for action is to have accessible crisis information included in a new Disability Rights Act.

Four men with orange lifejackets are standing in a yellow State Emergency Service boat on a swollen river.

Media organisations, businesses and services need to get on board too. The more people who produce accessible information, the better.

Ableism in health care

You’d think health care workers would know about disability, but apparently, disabilities are not discussed or taught in a health care context. Questions over quality of life, ability to decide and choose are all issues that affect people with disability when interacting with the health profession.

An article written by two nurses calls out ableism in health care. Ableism occurs when a person with disability experiences discrimination or prejudice from a health care provider.

A man in a turquoise hospital gown, cap and mask is holding a thumbs up sign. He looks like a nurse or a doctor.

They can underestimate the person’s quality of life or competence which affects their level of care. Patients need to feel safe and not to be fearful of being judged or not being heard.

Case study

The article uses a case study of a 60 year old women with Down syndrome to illustrate the issues during the COVID pandemic. This case is not about the care provider being ableist, but being an advocate for the woman. The doctor was pressured by family members to activate the do not resuscitate (DNR) code when the woman entered ICU. The doctor persisted in advocating for the patient and she eventually recovered.

Communication with patients is key. Patients with cognitive disabilities may face attention, memory and comprehension challenges. Nurses must therefore adapt their communication style, learn about the disability and avoid negative language that insults or demeans.

The authors encourage nurses to advocate for people with disability within health care services and in the design of environments.

Entrance to the emergency section of a hospital.. Co-design and ableism in health care.

Ableism isn’t just about patients – it includes family members, and other health care workers. Knowledge can help overcome stereotypes and stigma and improve health and wellbeing for all. Knowledge also helps nurses and other health professionals to feel confident when engaging with people with disability.

This short summary of Ableism in Health Care is open access, and you can access the full paper in the American Journal of Nursing.

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