Category: Policy development general

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. Even for the 15% of people with a high level of literacy, plain language works well.

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.

Emergency awareness and universal design

A smartphone with a map and wording of Fires Near Me. It is the app of the NSW Rural Fire Service. It helps with emergency awareness.

Why do some people appear unable to take in what is happening around them in an emergency? Being able to act quickly requires a good sense of the situation. However, not everyone has a sense of emergency awareness. Consequently they find decision-making difficult and fail to act appropriately. A Norwegian study has investigated a universal design approach to mitigate this lack of awareness.

In an emergency, sight, hearing, use of hands and ability to concentrate can all be impaired. Smoke, dust, cold, noise and paralysis from fear can affect anyone’s ability to think clearly. Smart phone apps are a good way of reaching people quickly with important information, but do they account for likely cognitive and physical changes?

The issues and solutions for “situational disability” are outlined in a technical paper from Norway. It raises our awareness that individuals are likely to behave in unexpected ways during a disaster. With an increased rate of climate-based disasters, and the move to digital information systems, this is a timely study. The underlying concern of how people respond is an important one. The paper shows that universal design principles can guide the way in compensating for a lack of emergency awareness.

The full title of the article is, Towards Situational Disability-aware Universally Designed Information Support Systems for Enhanced Situational Awareness.

Emergency Design: Designing as you go

A woman is sitting on the ground and is being helped by a person in protective clothing and a hi vis vest. The woman looks distressed.

Designing FOR an emergency IN an emergency requires a different design approach to existing tried and true methods. When urgency is the driver of design, processes and methods need a re-think. COVID-19 is a clear case of designing for an emergency during the emergency. So how can “designing-as-you-go” be done?

Designs for emergencies, such as wars or an earthquake, are usually devised before the event. Or they are designed after the event in preparation for future events. The COVID pandemic arrived without notice and few countries were prepared. Hence the need to design for the emergency while it is happening.

A different approach

A case study from Brazil shows how a totally different design approach was required. Rather than using standard methods the researchers took an organic approach to the problem. It was basically designing on the run. The process encouraged the inclusion of people who are often marginalised. While history tells us that Brazil is has not fared well during the pandemic, the study still has value for future situations.

Their approach is based on qualitative techniques. They relied on the knowledge of local people and processes of working together in a horizontal rather than hierarchical format. This approach also allowed participants to see how they could deal with the current situation as well as improvements for the longer term. 

“As a path, we point out the importance of identifying areas of convergence of interests, the creation of win-win policies and the daily encouragement of a culture of collaboration at the differing levels.”

The title of the paper is Design amid Emergency. It charts what they did, how they did it and what they learned from the process. Identifying areas of common interest and developing win-win policies to encourage a culture of collaboration was key. In summary, they found the co-creation design process the key to success. It can lead to improved quality of life in both the short and longer term. It also helps to embed resilience within the population. 

The government saw the value of co-design with citizens. It remains to be seen if they actually follow through on this networking approach to solving issues.

From the abstract

This article presents the process for the “Design of services under the COVID19 emergency social protection plan”. It was drawn up by a team of researchers and designers from Porto Alegre in collaboration with the Porto Alegre City Government.  The focus was on the provision of essential benefits to homeless and other vulnerable people during the pandemic.

The process was developed for the designers involved: without prior notice, within very short time frames and completely remotely, using only digital platforms. As such, the process was developed to respond to the emergency and amid the emergency. The objective of the article is to discuss how to design amid emergency.

The experience was guided by the methodological principles of action research and research through design. In addition to presenting the design results solutions aimed at the short, medium and long term. This article highlights the need to aim for the recognition of difference, the suggestion of alternative views, social innovation, the systemic transformation of society and sustainability.

Socioeconomic benefits and costs of universal design

Access and inclusion are considered a “good thing” until someone asks, “what will it cost?” Rarely does anyone ask “what does doing nothing cost?”. Many of the benefits are on the social scale, but are difficult for orthodox economists to measure with their current tools. So what to do about it? A report from Norway looks at studies of the socioeconomic benefits and costs of universal design and accessibility.

There is a risk that a disproportionate emphasis is put on the costs and benefits of universal design rather than its broader societal benefits.

Part of the front cover of the universal design and socioeconomic analyses report. It shows a blue city tram with a person about to board.

The Nordic nations are really keen to implement universal design policies. The high priority that Norway gives universal design makes it an international leader. Other Nordic countries are yet to show the same commitment. The report maps international socioeconomic analyses and related analyses. Although using different methods, the studies emphasise cost-benefit analysis.

Why do an analysis?

Cost-benefit analyses are commissioned for different reasons. There are four main types:

1. regulatory impact assessments to analyse the potential socioeconomic consequences of new legislation and regulation related to universal design or accessibility;
2. business case studies of the profitability of investing in universal design and accessibility;
3. cost-benefit analyses as part of an assessment of reasonable accommodation, primarily with regard to discrimination legislation; and
4. research projects examining the effects of accessibility measures in general, or of specific measures, or their benefit to different target groups.

What do they look at?

Most of the analyses are about housing and the built environment with a focus on legal access requirements. The studies mainly focus on the consequences in terms of participation, employment, risk of falls, and health benefits for people with disability.

Street scene of Oslo showing footpath dining and 2 cyclists.

In the transport sector, studies mainly looked at travel time and willingness to pay more to improve accessibility. Business case studies dominate the field of information and communication technology.

Costs are usually easier to measure in monetary terms than benefits. Assumptions based on hypothetical reasoning, such as accessibility results in increased employment, lacks evidence.

From the conclusions

Many studies indicate there are significant benefits for people with and without disabilities. However, evaluating these benefits against quantifiable costs entails other variables.

Regulatory impact assessments of new legislation lacks data for calculating different effects. Specialist consultancy firms often carry out these assessments as government staff lack expertise.

In other studies, new knowledge emerges but with different methods. Designing these studies and collecting data is a constant challenge. Measuring the benefits of universal design in its broadest sense is even more difficult than measuring statutory access requirements.

It is at least as important to study why people choose not to use, say public transport, as it is to study the benefits for those who do. Any cost-benefit analysis of universal design and accessibility must be accompanied by what constitutes a cost and for whom.

The report presents areas for improvement and development including the ongoing exchange of experience and knowledge.

The title of the report is Universal design and socioeconomic analysis: A survey of analyses and literature. The main part of the report is in Swedish, but the English language summary begins on page 105. Included in the list of documents at the end is the Australian Building Codes Board Regulatory Impact Statement on accessible housing.

Abstract

What do measures for increased accessibility for people with disabilities cost? And what benefit do the measures provide? What analysis methods are there to evaluate the effects of increased accessibility? This report presents a survey of socio-economic analyses carried out in the Nordic countries and internationally.

An accessible society is a priority goal for the Nordic countries’ disability policy. The concept of universal design has become increasingly central to the Nordic countries’ work.

Calculations of the costs and benefits of measures for increased accessibility are requested by authorities and companies as well as organizations. The report presents studies, methods and analyses to evaluate the benefits and costs of various measures within universal design and accessibility. 

The focus is on cost-benefit analyzes and impact studies. The mapping has been carried out via a literature search, surveys to experts and two workshops. A total of 45 studies and seven literature reviews are presented in an English-language appendix. 

Who gets heard in research methods?

Many studies use research methods that are not designed to enable everyone to participate. This means only some people get heard and for others, researchers aren’t hearing them. Whether it’s academic research or a workplace survey researchers could be missing out on valuable information. Cathy Basterfield makes this point in her short article on who gets heard in research methods .

Co-design processes are another form of research – action research. But will that process include people with intellectual, physical and sensory conditions? If there is a reading component, will everyone be able to read and interpret written information?

An international group of adults stand with a big board in front of them. It says, Make Things Happen. There are lots of coloured post it notes on the board. Who gets heard in research methods?

Basterfield lists some common problems with surveys: use of difficult vocabulary, imprecise response options, and ableist language or concepts.

People who need Easy English find it confusing to be asked to read a statement and rate their agreement on a scale. They prefer to be asked a direct question.

Picture of a hand holding a pen and filling in boxes on a survey form

Expecting every person to have the ability to access websites is another barrier. 25% of Australian adults are digitally excluded according to Basterfield. Some only have a phone and completing surveys requiring text is difficult at the best of times. Basterfield’s tips to help make sure everyone can understand your information:

  • add prefaces to increase precision or explain context
  • simplify sentence structure for questions
  • replace difficult words with straitforward terms
  • drop the jargon
A boy sits at a desk, pen in hand ready to write on the paper.

There is more information in Cathy Basterfield’s article Inclusive research and surveys.

Assistive technology and universal design

All the universally designed places, spaces, and services are of no use if a person cannot access them due to lack of the assistive technology they need. On the other hand, a wheelchair, for example, is of little use without level access in the built environment. Together, assistive technology and universal design form the disability inclusion continuum. Both are needed but are rarely discussed together.

The assistive technology and universal design continuum showing AT at one end an universal design at the other. In between the two meet for inclusion.
Assistive technology and universal design work together for disability inclusion

Together, assistive technology (AT) and home modifications are essential for independent living. But access to the funding schemes is somewhat haphazard, especially for the majority of people who are not NDIS participants. The cost of AT and home modifications is the cited as the reason for letting the status quo remain. But who is really paying for NOT funding AT for the people who need these devices? Until now, there has been little research on this issue.

A team at Monash University set up a study to identify the many AT and home modification schemes in Australia. They also conducted an economic analysis of the data they collected to form policy recommendations. The fact that there are 88 government funders administering 109 schemes tells us there is a problem here. Difficulties obtaining data from these schemes confounds the issues further.

Recommendations

The NDIS, and the misplaced assumption that it will cover everyone with a disability, has caused greater inequity in the provision of AT. It now makes the matter more urgent.

The most obvious recommendation is to take a whole of government approach to tackle the inequity of access to AT and home modifications. The second, is to devise a way of capturing data for more informed decision making. Data are essential for measuring needs and outcomes. The third recommendation is to co-design – a universal design concept – with stakeholders.

Governments cannot expect to achieve significant change within Australia’s new Disability Strategy unless people with disability have access to AT and HM they need. The current study offers new evidence to inform government responses to realise the potential of AT and HM through public policy reform.

Assistive technology was peviously known as “aids and equipment for people with disability”. That’s because it is not mainstream equipment such as a pair of scissors, or a bicycle. Anyone requiring assistive technology requires a prescription by a health professional to access a funding scheme. The same goes for anyone requiring a home modification so they can live safely at home.

The title of the paper is, It is time for nationally equitable access to assistive technology and home modifications in Australia: An equity benchmarking study. It is open access.

From the abstract

Australians with disability have inequitable access to assistive technology (AT) and home modifications (HM). This is inconsistent with human rights obligations and fails to capitalise on internationally recognised potential return on investment.

This study quantifies the public provision of AT and HM in Australia by identifying all publicly funded schemes and comparing data on the spend per person.

An environmental scan and data survey identified 88 government funders administering 109 schemes. Data were available for 1/3 of schemes. Economic evaluation of available cost and participant data estimated the annual AT/HM spend per person per scheme.

Data demonstrated significant AT/HM spend variability across schemes. Modelled costs are presented for a $16 billion national scheme where all Australians with disability are funded NDIS-equivalent. There are substantial service provision gaps and an urgent need for change in disability policy. A cost model and policy principles are proposed to achieve economies of scale and equity in the provision of AT and HM.

Victoria’s Autism Plan

The Victoria’s Autism Plan builds on their Absolutely everyone: state disability plan. It incorporates commitments to remove specific barriers faced by people in the autistic community. The plan is based on feedback from a parliamentary inquiry into the needs of autistic people and their families. Building helpful attitudes toward autistic people is a key element of Victoria’s Autism Plan.

The document begins with personal stories, which is pleasing to see because they are more revealing than statistics or diagnoses. It sets the tone for the rest of the document and acknowledges additional barriers faced by the autistic community.

Front cover of Victorian Autism plan showing a child in a blue track suit on a swing. A woman stands behind him.

A note on language

The term Autism Spectrum Disorder (ASD) is no longer the preferred term. Language is influential in changing community attitudes so choosing the right terms is important. Individuals and advocacy bodies were asked which term they thought should be used in the plan. There was general agreement that the term “autistic people” should be used. An important point – ask people what terms they prefer.

Key points in the plan

The parliamentary inquiry found that autistic people experience social isolation, and difficulty accessing health and other public services. Specific barriers included:

  • lack of community understanding
  • accessing education that meets their needs
  • exclusion from employment opportunities
  • limited access to supports and services
  • additional barriers to inclusion for autistic people with intersecting identities
A boy and a woman lay on the grass together looking up at the sky.

The commitments in this plan relate to the key areas in the state disability plan: inclusive communities; health housing and wellbeing; fairness and safety; and contributing lives. The plan has more detail on each commitment and useful case studies illustrate success stories.

Although there is greater community awareness of autism, community attitudes remain the biggest barrier to inclusion in social and economic life. Many autistic people avoid environmental barriers such as crowds, noise and light levels. Worrying how people will treat them or respond to them adds to social isolation.

There are four ways to access the plan on the website: Full version in PDF, Easy English Version in PDF, a text version in Word, and an Auslan summary. Or you can download the full PDF version, Victorian Autism Plan.

Inclusive and accessible libraries

We know public libraries have books and magazines, but they are often a major focal point in a community as well. But not everyone can take advantage of the many and varied library resources, and it’s not just about being able to read. Getting to and around a library and being made welcome will encourage more people to take advantage of their local library. So what actions can library staff take to make inclusive and accessible libraries?

Malmo City libraries in Sweden developed a guide to accessibility for their staff. It’s titled, A Library Without Obstacles: A Guide to Accessibility. The guide is easy to read and follow and is useful for any information service, not just libraries. It’s translated to English and consequently, some terms are specifically Swedish.

Libraries in Sweden must be accessible to all and provide an equal opportunity to enjoy literature and knowledge. Their basic premise is whatever is necessary for some is good for everyone. This premise holds for all information services. Image is the front cover of the guide.

Front cover of A Library Without Obstacles with a photo of a girl with a tablet close to her face. She is smiling. Inclusive and Accessible Libraries.

What do libraries offer besides books?

Libraries across the globe arrange events throughout the year including school holidays. Many offer community information services, and librarians have skills in finding information when looking for something in particular. Events must be as accessible as possible and visitors like to know the level of access they can expect. The guide lists some minimum requirements. The way information is presented is also important.

“We write so everyone can understand. Plain language means using words that are easy to understand in a clear and simple structure. Use everyday language, write short sentences, and begin with the most important information.” Image is from the guide.

A photo from the Guide showing a young man in a blue shirt working on his laptop. The text says, Accessible information and communication.

Reading without obstacles

Most libraries offer adapted media such as talking books, large print and easy to read books. Getting to the library and finding your way around is key for people with physical disabilities. The aim of an inclusive and accessible library is that everyone should be able to reach their next book.

While this guide is for public library staff, the content is applicable to other institutions and services that provide public information. An excellent resource with many of the actions easy to achieve.

Inclusive healthcare practice

Almost everyone finds themselves in hospital at some time whether as a patient or a visitor. Consequently, we are talking about the whole of our diverse population. But how well is diversity, equity and inclusion considered in healthcare practice? If the statistics are anything to go by, we are not doing well. Marginalised groups experience poorer health outcomes. The conditions in which people live – referred to as the “social determinants of health” – are the main reason for this.

Thirteen people were involved in devising 12 Tips for Inclusive Practice in Healthcare Settings.

A man in a white hospital shirt is wearing a blue face mask and has a stethoscope around his neck. He is looking into the camera and is posing with a thumbs up sign.

Appropriate terminology is a major feature in the list of 12 tips. Non-judgmental factual terms are preferred. Labels such as “obese” or “schizophrenic” can imply blame or non-compliance. And some patients will want to use non-binary gender terms when referring to themselves. Using the person’s preferred terms is recommended in all situations as these can vary. For example some people say they are autistic and others will say they have autism. Then there are people with multiple identities (intersectionality).

The 12 Tips for Inclusive Practice

Here is a brief outline of the the 12 tips.

Tip 1: Beware of assumptions and stereotypes: An individual might have multiple diverse characteristics. In the absence of early information it is easy to assume some things by default. A wheelchair user might conjure up assumptions about the health and ability to make decisions. A person accompanying a patient may be assumed to be a partner or family member.

Tip 2: Replace labels with appropriate terminology: The main point here is to keep up to date with best-practice terminology. For example, guidelines for preferred language for First Nations people is shifting and evolving. Some terms considered derogatory are now embraced by some (queer, autistic).

Tip 3: Use inclusive language: words can exclude and “other” people when they deemed to be different to oneself.

Tip 4: Ensure inclusive physical spaces: Accommodating physical, sensory and cognitive needs improves patient experience. Inclusive design goes beyond legislated minimum access requirements for buildings. For example gowns, furniture, and blood pressure cuffs, should accommodate all sizes.

Tip 5: Inclusive signage and symbols: A rainbow flag or First Nations flag will make people feel welcome. However, the use of these signs needs to be accompanied by inclusive care to avoid disappointment.

Tip 6: Appropriate communication methods: This is where body language and auditory input come into play. Not everyone processes these cues well and sometimes information is better put in writing.

Tip 7: Adopt a Strengths-Based Approach: This approach avoids stereotyping and acknowledges patients’ capacity for resilience and builds on their strengths.

Tips 8 – 12 focus on the health system and healthcare delivery and encourages health workers to advocate for improvements.

The title of the Australian open access article is Inclusive Practice in Healthcare Settings.

Abstract

This paper outlines practical tips for inclusive healthcare practice and service delivery, covering diversity aspects and intersectionality. A team with wide-ranging lived experiences from a national public health association’s diversity, equity, and inclusion group compiled the tips, which were reiteratively discussed and refined. The final twelve tips were selected for practical and broad applicability.

The twelve chosen tips are: (a) beware of assumptions and stereotypes, (b) replace labels with appropriate terminology, (c) use inclusive language, (d) ensure inclusivity in physical space, (e) use inclusive signage, (f) ensure appropriate communication methods, (g) adopt a strength-based approach, (h) ensure inclusivity in research, (i) expand the scope of inclusive healthcare delivery, (j) advocate for inclusivity, (k) self-educate on diversity in all its forms, and (l) build individual and institutional commitments.

The twelve tips are applicable across many aspects of diversity. They provide a practical guide for all healthcare workers and students to improve practices. These tips guide healthcare facilities and workers in improving patient-centered care, especially for those who are often overlooked in mainstream service provision.

The 12 tips for inclusive healthcare with five underpinning concepts: diversity, equity, inclusion, intersectionality, strengths based approach.

8-Inclusion needs to prevent discrimination

The 7 Principles and the 8 Goals of universal design have their roots in the built environment and people with disability. We have moved on since their inception to thinking about how other marginalised groups can be included. With this thinking comes intersectionality where an individual can be a member of more than one of those groups. For example, a female refugee with a disability.

The 8-Inclusion Needs framework sits alongside the classic 7 Principles and the practical 8 Goals of universal design. Together they provide a more holistic view of the real lives of people.

A human head shape with a montage of photos of many different people.

The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.

The 8-Inclusion Needs of All People framework

The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:

1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided.
2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do.
3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential.
4. Representation – Ensuring all people can contribute and are equally heard and valued.
5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people.
6. Language – Ensuring the choice of words or language consider the specific needs of all people.
7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered.
8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.

Individual identities – a list

Identities included in the analysis of research on the lived-experience of underrepresented identities:

    • Gender
    • Race/ethnicity
    • Socio-economic status/class
    • Indigenous
    • LGBTQI+
    • Disability
    • Religion
    • Age
    • Immigrant
    • Illness (physical or mental)
    • Refugee
    • Veteran
    • Neurodiversity

The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.

From the abstract

This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.

The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.

An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.

The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.

Caring cities are inclusive cities

Care is both a need and a service, but it is also a social value that helps qualify how services, assistance, and support are provided. The value of care aims to keep people feeling safe and maintains their dignity. And caring cities are inclusive cities. A policy paper for the World Summit of LoA narrow pedestrian street with market stalls and shops. A caring city is an inclusive city.cal and Regional Leaders at local government level proposes some thoughts on this.

A city that cares fulfils its human rights obligations as well as the needs and aspirations of everyone. Places and spaces should be available, acceptable, accessible, and affordable for everyone. This means city and community ecosystems need a new social contract to be caring. This contract should involve collaboration and be based on respect for people and the environment. 

The policy paper discusses the challenges and sets some recommendations for local and regional governments and some points on taking local action. This paper will be of interest to policy makers in all levels of government. 

Enabling Environments for Local Action

“The responsibility for caring extends across all of government. Local and regional governments need to be supported and enabled to make the necessary transformations in favour of caring systems. To this end, this paper recommends taking the following actions at the national level:

a. Enact adequate, inclusive regulatory and policy frameworks establishing the basis for green, sustainable, and accessible public services and infrastructure

b. Sustain adequate transfer and allocation of financial resources to strengthen local-level technical capacity and enable efficient implementation.

c. Establish the legal foundations to institutionalize meaningful participatory and multi-level governance that considers the whole of society, moving past political alliances and promoting government accountability at all levels.”

Joint way forward

Governments at all levels need to share responsibility for creating caring systems by collaborating with communities. The policy paper recommends establishing strong partnerships and collaboration to enable social change. Here are some of the key points: 

        • Care is a human right and a public good and universal access to it
        • Establishing collaborative platforms and social dialogue
        • Challenging the gendered division of labour of paid and unpaid care work
        • Respect for local and indigenous knowledge
        • Accessible and ethical information management

The title of the policy paper is Caring Systems and was presented at the UCLG World Congress and Summit of World Leaders held October 2022 in Korea.

UCLG = United Cities and Local Government.

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