Category: Policy and Policy Development

Engaging people with intellectual disability in research

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. When you add systemic bias to the list it’s easy to see how the exclusion is perpetuated.

People with intellectual disability are often viewed as “vulnerable” in ethics approval processes. This makes their inclusion more difficult for researchers.

Four people are seated at a table but their faces are obscured. One is writing on a notepad. A coffee mug and laptop are on the table. Including people with intellectual disability.

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.

The title of the paper is, Inclusive Methods for Engaging People With Intellectual and Developmental Disabilities in Research Practices. This is a short paper and easy to read.

Technology and wellbeing

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.

The title of the article is, In the hands of users with Intellectual Disabilities: Co-Designing Tangible User Interfaces for Mental Wellbeing.

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 things that happen often in services which upset people, but which do not get treated as violence or abuse. They are things like having unkind jokes made about you, being ignored, or being disrespected.
  • In our project, we called this misrecognition.
  • We looked at when misrecognition happened between young people with disability and their paid support workers.
  • A lot of the time, people did not intend to cause harm. 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.

The article is titled, Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers.

Robotics, ethics and inclusive design

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.
A white human shaped robot is standing in a technology store. It has a touch screen attached to the chest area. What are the ethics and inclusion?

The title of the session is, Robotics at the Crossroads: A Discussion of Ethical Considerations, Moral Implications, and Inclusive Design. Here is a brief overview of the five abstracts.

Revisiting the use and misuse of autonomous

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.

Autism: What we have heard

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.

Front cover in red and white of the What we Have Heard Report.

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.

The title of the report is, Olga Tennison Autism Research Centre: Response to ‘What we have heard’ report. The research centre is based at La Trobe University. They aim to support autistic people to realise their full potential, and to actively participate in the community.

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
A young boy in a white T shirt is pointing at something in the distance. The background shows he is at the coast.

La Trobe University has devised a free app, called ASDetect to 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 a state-based autism plan in recognition of the need for community support.

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.

Occupational therapy & universal design

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.

A man in a wheelchair is separated from the crowd by a low concrete barrier. Occupational therapy & universal design.

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.

The title of the discussion paper is, Drawing on critical disability and universal design perspectives within occupational therapy and is open access.

From the abstract

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.

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.

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