Category: Policy and Policy Development

Dilemma of autism disclosure

Choosing whether to disclose that you are autistic is an individual decision. But what happens when an individual tells others they are autistic? Under what circumstances do they disclose their autism? And how can this information help others decide about their own autism disclosure? These key questions were the focus of two studies by Aspect Research Centre for Autism Practice.

Feeling excluded and misunderstood has implications for both physical and mental health. Personal interactions are part of the story, but the way we design policies, places and services also add to exclusion.

There is a lot of research on disclosure for Autistic individuals; however, the information is not easy to understand or use when making personal decisions about whether or not to disclose.

Part of the front cover of the full report with a sign saying I am Autistic.

Study one – disclosing

Most participants participating in an online survey told at least one other person they are autistic. About one third told most of their regular contacts. Only 2% didn’t tell anyone. Half the participants preferred to tell people face to face. Delving deeper into the responses, a lot depended on who they told.

Telling healthcare workers, family and friends generally received a positive response. However, telling co-workers had a higher negative impact. If the individual feels that being autistic is part of their identity, they are more likely to tell others.

Study two – experiences

In study two, participants used a smart phone app to record disclosure opportunities over a 2 month period. Telling others in a conversation was the preferred way to disclose. The experiences of disclosing in different settings was generally positive overall. Surprisingly, disclosing at home had the lowest positive score while the community had a high score.

The researchers found that disclosure led to a wide range of reactions and the decision to disclose was influenced by the context. However, participants learned from telling others, and developing skills in disclosing was important.

Disclosure guides

The findings from these studies were used to inform a set of guides for autistic people and non autistic people. The Autism Spectrum Australia website has separate downloadable guides:

  • Disclosure opportunities resource guide for autistic people
  • Disclosure opportunities resource guide in Easy English
  • Supporting autistic people who may want to disclose guide for non autistic people
Autism disclosure guide infographic. Do I feel safe, Do I have a reason, Do I have emotional capacity, Am I prepared for the response.

The full report

The full report, I am Autistic: Disclosure experiences of Autistic adults, summarises the two studies with more detail than the guides. Two quotes from the report illustrate the importance of identity:

”I didn’t feel I had my own identity until I was diagnosed. I also never felt part of any community until I was diagnosed.”

“Finally knowing where I fit in life and being able to embrace that and then tell other people about my autism – it all is connected and leads to a greater me.”

Age friendly cities toolkit

The World Health Organization has updated their resources on age-friendly cities and communities and added a toolkit. In 2007 the Age Friendly Cities and Communities (AFCC) program was rolled out. A Global Network of Age-Friendly Cities followed in 2010. The strength of the program was an early form of co-design with older people in local communities. That is, it promoted a bottom-up process with top-down policy support.

The guide has suggestions for meaningful engagement of older people in creating age-friendly environments. It includes detailed examples of existing national AFCC programmes, and practical steps for creating or strengthening such a programme. The vision is for all countries to establish a national AFCC programme by the end of the UN Decade of Healthy Ageing (2021–2030).

The toolkit is a separate set of resources to the guide.

Front cover of the toolkit with lots of different icons depicting all the aspects of a community with trees, buildings, parks and people in an age friendly city.

The glossary lists all the words and labels used for older people and is a useful resource in itself. As with many official guides there are a lot of words and explanations about the history and ideas. The eight domains of action are the same as the 2007 version of the guide. The Framework for implementing national programmes is in section 3.

You can access all the relevant documents and information on the WHO’s National programmes for age-friendly cities and communities web page. If you want the free toolkit you will need to sign up to get it.

A Global Network of Age Friendly Cities

There are more than 1400 members of the Global Network, and looks like it will continue to grow. The network acts locally to encourage full participation by older people in community life and active ageing. The program is an important step in meeting the goal of the UN Decade of Healthy Ageing. Setting the scene for improved participation by older people benefits everyone. What’s good for older people is good for all people.

The Age Friendly Cities and Communities program puts older people at the centre and covers all aspects of life. It’s where policy meets people. The vision is that older people can transform themselves by transforming the environments in which they live, work and play.

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.

Access and inclusion for transport in Queensland

Different government departments are responsible for different aspects of transport services and infrastructure. Consequently, not only do we “mind the gap” at the platform, we have to mind the gaps elsewhere in the system. And these gaps are sometimes just too wide for some people with disability. Queensland’s department of Transport and Main Roads seeks to overcome these gaps with their Access and Inclusion Strategy.

Queensland is a popular tourist destination and accessible tourism needs accessible travel to support this sector. Queensland is also hosting the 2032 Olympic and Paralympic Games and this has provided an extra reason to get things right.

A boy in a powered wheelchair is mounting the ramp into the Queensland Rail train. A woman stands behind him and the station guard looks on. A man with a baby stroller and boy wait nearby to enter the train carriage. The image is from the Access and Inclusion webpage.

The Access and Inclusion Strategy aims to create a single integrated network accessible to everyone. The Strategy was developed in consultation with customers, employees and partners, and it covers services, products, information and infrastructure.

The Accessibility and Inclusion Plan 2023-2024 supports the Accessibility and Inclusion Strategy. The Plan has 27 actions across three key pillars: strategy, culture and process.

The web pages for the Strategy and the Plan have a summary and links to alternative formats of the documents including Auslan and a narrated version. There are alternative language summaries and video transcripts as well. An Easy English version is missing though.

Law schools and universal design

Aerial view of a large public library with long desks around a central console. Law schools teach law and introduce the values that students take into the legal profession. Unless law schools embrace universal design, they will continue to be inequitable and pose barriers to people who might be good lawyers. This is the basis of an article by Matthew Timko where he says the place to introduce universal design is through law libraries.

Timko says the law library is the ideal testing ground for changes that assist student comprehension and testing. Beginning with the library services, the value of universal design will gradually become apparent to all stakeholders. From there it will enter the legal academy, legal education process and legal profession.

Timko uses the 7 Principles of Universal design as the framework for his proposition. This shows how flexibly the principles can be applied. He then discusses the role of disability legislation in the United States and the supports available. 

Photo of the sign on the grey stone building of The Royal Courts of Justice. Ethical and professional standards provide another opportunity to support individuals. Timko argues that most accommodations pose menial burdens on institutions but provide great benefit to individuals. However, they need to be provided as a general rule, not just when they are asked for. This is the underlying tenet of universal design for learning. 

The article goes into more detail about the role of legislation and how it should apply to law schools. In the conclusion, Timko states:

“Universal design offers the key to not only increased access to legal education and legal knowledge but also a more fundamental shift in the perceptions and thinking that have plagued disability laws and design habits over the last 30 years.”

The types of universal design features discussed can be introduced into the law library gradually and in cost-effective ways. 

The title of the article is, Applying Universal Design in the Legal Academy. 

From the editor

I was invited to participate in a question and answer interview for the Law Society Journal with Features Editor, Avril Janks. I was encouraged to find that universal design has entered the realms of the legal profession and happy to participate. 

We discussed universal design broadly and then how it might be implemented in legal workplaces. Universal design can be applied to the office design, office systems, and employment practice. So plenty of scope for the profession to be more inclusive. If you want to read the article published in the March 2023 edition, contact journal@lawsociety.com.au 

Jane Bringolf

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 8-Inclusion Needs were drawn from the results of a literature review. 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 on the discrimination causes of 13 individual identities and 5 intersectional identities was undertaken. Eight common themes emerged, and in light of the findings, a proposed new framework, called The 8-Inclusion Needs of All People, is presented.

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.

Global roadmap for healthy longevity

When we use the phrase “design for all ages” it usually means “let’s include older people as well”. How did they get left out in the first place? The concepts underpinning universal design aim to overcome this division of ages. Many research articles address the issues, but community attitudes are slow to change. The Global Roadmap for Healthy Longevity is yet another publication promoting the need to be (older) age-friendly. It takes a global view with case studies and recommendations. 

Chapter 5 of the roadmap focuses on physical environment enablers. These include housing, public space and infrastructure, transportation, climate change and digital access. There’s very little new information in this chapter, but it brings together international research for useful recommendations.

A circle of six different coloured rings each with a key actor for an all of society approach to healthy longevity.
Six key areas of collaboration are needed.

Collaboration is needed at all levels including non government and local community organisations, the private sector, researchers and families. 

One of the key recommendations is taking a universal design approach and involving people in design processes. There is more emphasis on communities getting involved in the solutions. Strategic action plans for ageing societies exist in many countries, but few are heeded. That’s because they are viewed as being for a single sector or age group. Therefore collective action is needed. 

The Global Roadmap for Healthy Longevity is not just about older people. It recognises that all ages need to be considered, for younger people will eventually get older. It is a comprehensive publication. Here is a sample of findings from Chapter five. 

Housing

“Finding 5-1: Housing that encourages independence, social integration, and mobility is a key factor in older adults’ ability to realize healthy longevity, but the availability and affordability of this type of housing are limited, especially for those with limited financial resources.”

Walkability

“Finding 5-3: Intentionally designed public spaces and built environments can play an important role in influencing healthy longevity. Creating opportunities for mobility, walkability, access to green space, and social engagement can enhance the lives of older people and reduce mortality and morbidity.”

Finding 5-4: Public infrastructure, such as sidewalks, bike lanes, and well-lit streets, can influence the usability of an area and adults’ perception of safety.”

Transportation

“Finding 5-5: Safe and accessible transportation options can give older adults the opportunity to enjoy independent mobility around their community instead of avoiding social activities and becoming isolated and lonely.”

Information and communications technology

“Finding 5-6: Access to broadband internet is integral to many aspects of society. Low-income and rural households are especially likely to lack broadband access, which greatly influences their equitable access to other resources and their ability to work remotely and stay connected to social networks.”

Global Roadmap for Healthy Longevity is published by National Academies of Sciences, Engineering, and Medicine. 2022. Global Roadmap for Healthy Longevity. Washington, DC: The National Academies Press. https://doi.org/10.17226/26144. The full publication is available for download. 

 

Our Streets: Dangerous by Design

The latest Dangerous by Design report from Smart Growth America has some interesting statistics about road deaths. This 2022 report differs from previous reports because it captures the behaviours of people during a pandemic. People walked more and drove less, but there were more road deaths. The report examines why.

“Seeing driving go down while deaths went up should call into question the long-held belief that traffic fatalities are inextricably linked to the amount of driving.”

Front cover of Dangerous by Design Report.

Conventional wisdom among policymakers and transportation professionals is that traffic fatalities are inextricably linked to the amount of driving. But the decrease in driving during the pandemic meant less congestion and a significant increase in speeds. Therefore more people were killed. Consequently, speed is the key factor.

Smart Growth America claims that too many transportation agencies and decision makers have been “asleep at the switch”. Their incremental changes to improve safety have not made any positive difference overall.

Those in power, “will have to unwind the deeply embedded, invisible yet powerful emphasis on speed, which is completely incompatible with safety.”

Two ambulance officers push a patient into the ambulance.

The Dangerous by Design 2022 report has several recommendations in terms of policy and design. The guest supplements provide practical experience and add depth to the report. The bottom line of the report is that we have to choose between speed and safety.

Walking and wheeling

The report has a sidebar about “walking” and inclusive language. Of course, some people cannot walk and that is why the term “pedestrian” is used throughout. People using mobility devices are considered pedestrians. However, they are not separated from people using other devices such as skateboards. Consequently, data are difficult to assess in terms of people with disability.

An engineer’s perspective

Charles Marohn writes in a guest supplement that engineers start the process by using the values of their profession. They don’t stop to consider their values might be questioned by others. It’s about standard practice. He says no-one asks questions about speed in proposed road and street designs. Engineers might claim they are not in control of how fast people drive, but Marohn questions this “excuse”. He believes they have a duty to consider it.

Accessible and inclusive cities: case study

The research team with the Mayor (standing).
Bunbury research group

Talking about universal design is all very well, but it takes collective action to make it happen. Collective action for accessible and inclusive cities requires everyone to get on board and work together. And “everyone” means governments at all levels, urban planners and designers, construction companies, contractors and tradespeople. Everyone also means citizens and this is where co-design methods come in. 

Two case studies form the basis of a research paper on two regional centres in Australia. One is in Geelong in Victoria and the other in Bunbury, Western Australia. The authors describe the collaborative and action oriented process in both studies. 

A note of caution. Many local governments have little power over developments that not funded by them limiting what they can achieve. Private and commercial developers can legally challenge any requirements beyond the building codes. 

Recommendations for both centres emerged from the research process. The key recommendation is to use a co-design and co-research process. The authors take a universal design to the whole process and recommendations. They also call for enhanced standards including mandating co-design. 

The title of the paper is, Accessible and Inclusive Cities: Exposing Design and Leadership Challenges for Bunbury and Geelong. It is open access. 

Two of the authors, Adam Johnson and Hing-Wah Chau, were speakers at the 4th Australian Universal Design Conference. Papers were published by Griffith University.  

From the abstract

This article compares research identifying the systemic barriers to disability access and inclusion in two regional Australian cities. We discuss some of the leadership and design challenges that government and industry need to address to embed universal design principles within urban planning, development.

In Geelong, Victoria, the disability community sought a more holistic and consultative approach to addressing access and inclusion. Systems‐thinking was used to generate recommendations for action around improving universal design regulations and  community attitudes to disability. This included access to information, accessible housing, partnerships, and employment of people with disability.

In Bunbury, Western Australia, a similar project analysed systemic factors affecting universal design at a local government level. Recommendations for implementing universal design included staff training, policies and procedures, best practice benchmarks, technical support and engagement in co‐design.

Universal design and local government

Three children, each a wheelchair user, are enjoying the spinner in the playground: a universal design.
Children enjoying the spinner in the playground

Here is an earlier paper from Adam Johnson who used Bunbury in Western Australia as a case study for his presentation at the UD2021 Australian Universal Design Conference. Bunbury set itself an aim, and a challenge, to be the “Most Accessible Regional City in Australia”. Adam explained how he used participatory action research (PAR) methods to meet Bunbury’s challenge. Universal design in local government means involving the people who are the subject of the research. In this case, people with disability and older people. 

PAR has three principles: 

    • The people most affected by the research problem should participate in ways that allow them to share control over the research process
    • The research should lead to some tangible action within the immediate context
    • The process should demonstrate rigour and integrity. 

Adam recruited 11 co-researchers to work with him: 6 people with disability, 3 family carers, and 2 support workers.

Local government is where the ‘rubber hits the road’. Local government is best placed to work with residents and understand the context of where they live, and it means they can be innovative with solutions tailored to local needs. 

The research project had a positive impact:

– Greater alignment between policies and practices at the City of Bunbury with universal design.
– Co design panel created informing many current infrastructure projects.
– Universal design standards adopted.
– Staff and contractors trained in Universal Design.
– $100,000 per annum allocated for auditing and retrofitting

The project was undertaken with a three year industry engagement scholarship with Edith Cowan University. The title of Adam’s presentation is, Universal design in local government: Participatory action research findings. 

 

Vulnerable citizens in floods and fires

Climate change is bringing increasingly dangerous and catastrophic weather events. Floods and fires are a regular occurrence in Australia, but not with the frequency and intensity that we are seeing now. 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 as we saw this year. A major flood event occurred previously in 2017 and four researchers decided to explore the experiences of people with disability.

We 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. Some NDIS participants will need extra support to prepare for and react 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.

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

A paper by Bennett and Van Ravenstein spells out all the technicalities of fire prevention and control. 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.

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