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
imitation 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.
Universal design and public libraries
The role of librarians is to help people to find what they are looking for. They are also keepers of local knowledge and services.
People of all ages and backgrounds come and go. And they all have different values and interests. Potentially, that makes libraries a place to forge social inclusion. That’s where universal design comes in.
Gerd Berget’s writes on the theme of public libraries as places where diverse groups are visible to each other. She argues that public libraries have the potential for increasing respect for each other and thereby reducing social exclusion. In her paper, Berget proposes that the way to introduce more diversity into libraries is to take a universal design approach.
The paper begins with a history of disability and social justice. The role of public libraries as a physical space follows. The final part of the paper discusses the purpose of universal design and it’s role in social emancipation. Berget discusses the seven principles of universal design and how they apply to libraries in the final part of the paper.
“Although full inclusion is not yet achieved, public libraries have a great potential in increasing the social justice and reducing oppression. To achieve that, librarians need to be aware of and engaged in making (and keeping) the libraries into low-intensive meeting places. There is also a need for more user engagement in the design of the public libraries, both regarding buildings, collections and services. Finally, it is important to a preserve the public spaces that facilitate convivial encounters”.
Libraries need accessibility and universal design
While non-disabled designers and librarians do their best to make library experiences accessible, students with disability hold the key to success.
The idea of co-design is not new in building design. However, libraries are both a building and a service. This is the issue tackled in a research study where students showed how to implement accessibility and universal design.
The level of accessibility for students with disability has improved, but it’s still not enough. Restrictive rules, lack of adapted communications systems and unsuitable signage are part of the problem. Students with disability should be involved from the outset when a new product or system is introduced – it’s a universal design approach.
The research study found three main ideas: communication, service and usage. The researchers said that if they learned one thing, it was the importance of giving a voice to students with disability. Also, mutual learning and knowledge sharing was found to build good relationships between staff and students.
The title of the article is, “Giving a Voice to Students with Disabilities to Design Library Experiences: An Ethnographic Study”, and is available in PDF or in text/html format.
From the abstract
Although librarians generally display an inclusive management style, barriers to students with disabilities remain widespread. Against this backdrop, a collaborative research project called Inclusive Library was launched in 2019 in Catalonia, Spain.
This study empirically tests how involving students with disabilities in the experience design process can lead to new improvements in users’ library experience. Based on the participants’ voices and follow-up experiences, the researchers pose suggestions on how libraries can improve their accessibility. Ensuring proper resource allocation for accessibility improves students with disabilities’ library experience.
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.
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.
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.
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.
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.
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.
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
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 including other marginalised groups. 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.
The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.
The 8-Inclusion Needs of All People framework
The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:
1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided. 2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do. 3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential. 4. Representation – Ensuring all people can contribute and are equally heard and valued. 5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people. 6. Language – Ensuring the choice of words or language consider the specific needs of all people. 7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered. 8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.
Individual identities – a list
Identities included in the analysis of research on the lived-experience of underrepresented identities:
Gender
Race/ethnicity
Socio-economic status/class
Indigenous
LGBTQI+
Disability
Religion
Age
Immigrant
Illness (physical or mental)
Refugee
Veteran
Neurodiversity
The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.
From the abstract
This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.
The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.
An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.
The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.
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.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.