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.
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, ALibrary 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.
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.
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.
Is it enough for the occupational therapy profession to just focus on clients and their occupation goals? Barriers faced by people with disability, are complex and multi-faceted and go beyond specific individual solutions. So, at what point should occupational therapists engage in issues of social justice? And can universal design thinking help?
Disability studies emphasise the dignity, worth and equal rights of all people and draws attention to the discrimination faced by people with disability.
Two researchers, one from social science and one from occupational therapy, offer an interesting discussion on this topic. They argue that occupational therapy practice and research should incorporate social justice and universal design perspectives. They add that they should join with the disability community to call for a more just society. One way to do this is to also promote the principles of universal design.
Incorporating social justice and universal design perspectives more effectively requires a change of mindset and ways of working. Expanding Person-Centred and Person-Environment theories to understand social and structural barriers is one solution. The occupational therapy profession has the potential to pave the way for more equitable services and policies.
Socio-political influences have gained increased attention within the occupational therapy profession. Critical disability studies question prevailing assumptions about disability and how disabling ideologies and practices are perpetuated in society. A universal design approach aims to address issues of inclusion and justice.
This paper discusses how the tenets of critical disability studies and universal design can contribute to occupational therapy practice and research.
We provide ideas on how practice can be guided by the tenets of disability studies and universal design to promote social equity.
Incorporating both perspectives in occupational therapy practice and research requires a change in mindset and ways of working. Occupational therapy knowledge needs to be expanded to scrutinise disabling hindrances hidden within social and structural spaces, and implemented in services.
We recommend working with disability communities to raise awareness and combat disabling barriers at various level of society.
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.
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
”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.”
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.
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.
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.
