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…’
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:
A toolbox of participatory methods is needed for engagement across the diverse population who have varied needs for housing assistance.
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.
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.
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.
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.
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
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.
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.
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.
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.
Dementia is a medical diagnosis that needs consideration beyond that of health care. Living with dementia is just that – living. Urban planning has a significant role to play in supporting people with dementia to maintain an active life in their neighbourhood. Samantha Biglieri’s magazine article on dementia and planning provides some useful advice.
Around two thirds of the population with dementia live in the community not a residential care setting. How can planners understand and meet the needs of this group?
Dementia is diverse
Dementia is an umbrella term to describe a set of symptoms that affect memory, visual perception, judgement and ability to sequence tasks. People who are neurodiverse or have an intellectual disability, also have similar experiences. When added together this becomes a significant portion of the population needing consideration in urban planning and design.
Designing urban settings for people with dementia provides benefits for others as well. For example, we all appreciate good wayfinding design with the use of landmarks and signage.
The importance of wayfinding
Getting lost and not knowing your way home is a common fear for people with dementia. When intersections and suburban houses look the same it becomes easier to get lost. Based on a UK study, briefly Biglieri suggests the following:
A short, irregular grid pattern of streets to create identifiable intersections and allow residents to visualize their travel path.
Streets with ample space for pedestrians with wide buffer zones between pedestrian paths, cycling paths and roads;
Variated architectural styles within the same development, mixed land-use, designs incorporating diverse styles of street furniture, public art, and vegetation to provide unique landmarks for improved navigation;
Signage that uses textual information (‘5 minute walk to the library’) and realistic photos (instead of icons, which can create confusion).
Development of memorable landscape features, open public squares, and community facilities.
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?
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.
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
People with intellectual disability continue to be excluded from research practices. This is often due to social and economic factors such as limited education opportunities and access to services. Exclusion is easily perpetuated when you add systemic bias to the list.
Ethics approval processes often view people with intellectual disability as “vulnerable”. This makes their inclusion more difficult for researchers.
The design of research methods systemically excludes people with disability and other marginalised groups. Consequently, their voices are unheard in health, employment, education and independent living research.
According to an article from the US, approximately 75% of clinical trials have directly or indirectly excluded adults with intellectual disabilities. Just over 33% of the studies have excluded people based on cognitive impairment or diagnosis of intellectual disability.
New methods needed
In response to the ethics and research design challenges, researchers are finding new ways to adapt their methods. The article discusses three approaches:
1. Adapting research materials and processes into individualised and accessible formats.
2. Adopting inclusive research participation methods.
3. Community participation and co-researcher engagement.
Although inclusion strategies are making progress, researchers are lacking helpful guidance. Consequently, including people with intellectual disability in research in a meaningful way requires more work.
A related article on co-designing with people with intellectual disabilities looks at developing technologies. Here is an excerpt from the abstract:
Involving people with intellectual disabilities on issues relating to their mental wellbeing is essential for developing relevant tools. This research explores the use of inclusive and participatory co-design techniques and principles.
Individuals with intellectual disabilities participated in a co-design process via a series of workshops and focus groups. The workshops helped participants explore new technologies, including sensors and feedback mechanisms that can help monitor and potentially improve mental wellbeing. The co-design approach developed various interfaces suited to varying ages.
People with intellectual disability and support workers
Abuse of people with intellectual disability focuses on extreme forms of violence at the expense of everyday indignities. Humiliation, degradation, and hurt have a negative effect on identity and makes it more difficult to recruit research participants.
An article by a group of Australian researchers recommends taking action to support both workers and people with disability for improved wellbeing. Here are the key points from their article:
Everyday harms are the little things that upset people, such as making unkind jokes about you, being ignored, or disrespected, are not treated as abuse
In our project, we called this misrecognition.
We looked at when misrecognition happened between young people with disability and their paid support workers.
Much of the time, people did not intend to cause harm, but the other person was still hurt by the things they did or said.
We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.
This study aims to demonstrate how disability theatre contributes to inclusive research practice with people with intellectual disability. The title of the article is Disability Theatre as Critical Participatory Action Research (CPAR). Here is an excerpt from the abstract:
This article describes how self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society create social justice disability theatre as critical participatory research. It demonstrates how disability theatre can contribute to and advance inclusive research practice.
Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities. It also offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured. Mentorship generates opportunities for self-advocates to learn, practice, and develop research skills.
The theatre creation process (devising, developing, and refining scenes) is research in itself where tensions are recognized as sites of possibility. Future research should explore strategies, and protocols for power sharing and problem solving within disability theatre.
This post features abstracts from a conference panel session about robotics and ethics, and inclusive design. There’s more awareness of the need for diversity and representation in the development of ethical robots. The decision-making processes that go into these robots must be inclusive and considerate of the diverse communities that will interact with them. The discussion papers focus on two things: ethical implications of diversity in robotic research, and fostering a deeper understanding of diverse perspectives on design.
Key concepts considered in the abstracts are:
Privacy and surveillance, bias in decision systems and automation and employment.
Diversity, equity and inclusion and autonomous machines.
The application of technologies like generative AI is outpacing our ability to understand the implications for users. So who is really being serviced by these technologies?
Autonomous vehicles and ethical decision making
One of the motivations behind autonomous vehicles (AVs) is the potential to reduce vehicle crashes due to driver factors such as inattention. However, there are social concerns about how AVs should behave ethically in unavoidable crashes.
Opportunities for inclusive and ethical design in the U.S. army
The male body as a standard the the design of military equipment changed in the 1980s. However, aviation remains male-dominated and, for example, airplane cockpits are still designed with men in mind. This where Human Factors design is needed to ensure military equipment is operated at optimum levels regardless of the body size of the user.
Ethics and inclusion in product design and development
Product experience researchers have a unique role to play in the development of creating new products. While they don’t write code or build algorithms, they look at the use and impacts of these technologies when they become products.
Design Equity
Human-robot interaction as a discipline likely has more questions than answers when it comes to equitable design. Is technology value-free? If technology is not value-free, what values, or who’s values are highlighted, and who’s are downgraded? Experts in diversity, equity and inclusion should collaborate with robotic engineers and designers.
The Olga Tennison Autism Research Centre has responded to the NDIS Review Committee’s interim report, What we have heard. In responding they draw on evidence from their research and from autistic people.
The report has 29 recommendations that go beyond the NDIS review to all sections of society. The focus is on children – one in ten Australian children are participants in the NDIS. The recommendations are based on providing supports in everyday early childhood settings and with collaboration across governments and community services.
Longer term support needs are minimised if neurodevelopment vulnerability is detected early and community-based supports are put in place.
When setting up the NDIS the Productivity Commission’s assumption was that about 1 in 150 children would need support. Research at that time showed it was closer to 1 in 69. Currently the estimation is 1 in 31 children are autistic. This figure is similar to those in other countries and indicates diagnoses not prevalence. In addition, autistic people are just as likely to have some of the same challenges neurotypical people face. Intersectionality applies here too.
Community supports in everyday settings
With the right community supports, children can make significant developmental gains and increase their chances of participating in mainstream settings. State and local governments should be key players in the quest to include autistic people in community activities, education and employment.
La Trobe University pioneered an autism screening tool which is used on children as young as 11 months. The SACS-R tool, or Social Attention Communication Surveillance Tool, is based on 15 years of research. Key points are infrequent or inconsistent use of:
gestures (waving, pointing)
response to name being called
eye contact
imitaton or copying others
sharing interest with others
pretend play
La Trobe University has devised a free app, called ASDetectto help parents detect autism in their child. the App is 83% accurate and is for children from 11 to 30 months.
This research paves the way for more autistic people to participate in everyday life and feel included. The Victorian Government has astate-based autism plan in recognition of the need for community support.
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.
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.
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.
