Lived experience stories from people with disability and health providers
Acknowledgement of Country and commitment to diversity
CheckUP staff and board respectfully acknowledge the Traditional Custodians of the land on which we work and live , and recognise their continuing connection to the land, water and community. We pay respect to Elders past and present, and future leaders. CheckUP strongly supports equality for all. We embrace diversity and condemn any kind of discrimination, be it on the basis of race, religion, ethnicity, sexual orientation, gender identity or disability.
Acknowledgement of people with disability
CheckUP staff and board also acknowledge and value the expertise and insights people with disability bring to an equitable society in which everyone is included and appreciated. In addition, CheckUP acknowledges the past and present inequities and injustices experienced by people with disability. By recognising, acknowledging, and understanding these barriers, steps can be made towards reducing them so a more empathetic and inclusive society can be achieved.
Funding Acknowledgement
Access for All: Disability awareness for health providers was funded by the Australian Government Department of Social Services (DSS).
We need to make every single thing accessible to every single person with a disability.
– Stevie Wonder
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I wish for a world that views disability, mental or physical, not as a hindrance, but as unique attributes that can be seen as powerful assets if given the right opportunities.
– Oliver Sacks
Challenge your unconscious biases, your negative perceptions and lift your expectations of what you think people with disability can do.
– Dylan Alcott
A word from CheckUP’s CEO - Ann Maree Liddy
CheckUP champions and drives full inclusion of people with disability, not only within our team and the health system, but in all aspects of our community.
Our commitment to improving the lives of people with disability is also reflected in Access for All: Disability awareness for health providers, an online disability awareness course developed and delivered by CheckUP. In our evaluation, 97% of participants told us they intended to improve the accessibility of the health service they provide and there was a statistically significant improvement in disability awareness.
As part of Access for All we wanted to showcase people’s learnings, impressions, and recognised value of the course. This includes the perspectives of health providers and people with lived experience of disability, and sometimes both together.
Thank you to those who generously contributed to the collection of case studies in this booklet. Your stories highlight the breadth of disability within our community, the importance of inclusion, and an understanding that disability is a usual part of human diversity that should be embraced.
As a not-for-profit health organisation whose focus is on improving the lives of the most vulnerable, developing Access for All has been enlightening and a privilege.
We have been humbled by the insights and guidance provided by the people with disability in our advisory group, and during our consultations. We are grateful for their generosity in sharing their stories and for their ongoing input when developing and delivering Access for All.
We trust that the case studies in this booklet provide you with confidence that things are improving, and why we must continue to step forward towards equality for all.
Finally, it is also our hope that completing the Access for All course and reading the stories shared in this case study booklet will compel you to be bold in your effort towards improving the lives of people with disability. Above all, we aspire to live in a community where everyone can participate, is valued, and feels as though they belong and matter.
About CheckUP
CheckUP is a not-for-profit organisation dedicated to better health for people and communities who need it most. CheckUP works with partner organisations and health providers to create healthier communities and reduce health inequities through a range of initiatives.
Our Vision, Purpose & Values
Vision
Better health for people and communities that need it most.
Purpose
To create healthier communities and reduce health inequities.
Values
Collaboration
We are proactive in building long term, mutual and respectful partnerships with external organisations.
Excellence
We are solutions focused and results driven to meet the needs of our customers.
Innovation
We are forward thinking: we embrace change and seize opportunity.
Integrity
We are transparent and honest in our actions and invest in socially responsible solutions.
Compassion
We act with care and consideration in all our interactions; everyone matters.
About Access for All
Access for All: Disability awareness for health providers online course aims to increase awareness of the barriers people with disability experience when accessing healthcare, and improve disability awareness among health providers. The online course is suitable for all health professionals, health administrators, health reception staff, health students, or anyone else who works in the healthcare industry. Access for All provides valuable information, tips, strategies, and useful resources to assist in reducing barriers and improving the accessibility of healthcare for people with disability. Person-centred care is further enhanced by helping health providers understand their legislative obligations to provide equitable, inclusive care for people with disability. Access for All also earns continuing professional development (CPD) points for health providers and supports accreditation standards.
Learn more about Access for All: Disability awareness for health providers at the CheckUP website https://checkup.org.au/what-we-do/ online-training/access-for-all/
Access for All Advisory Group
Input, advice and guidance for this training program was provided by the Access for All Advisory Group. The group was comprised of consumers and health professionals with a lived experience of disability, Aboriginal and Torres Strait Islander consumers with a lived experience of disability, mainstream health professionals, and Aboriginal and Torres Strait Islander health workers.
Amanda Frier is the manager of the Access for All program. She is a dietitian with a PhD on the social determinants of health. Acquiring a disability while being a health provider has allowed her to traverse the healthcare industry both as a consumer and as a health provider. This unique perspective has provided her with insights and first-hand experience of healthcare for people with disability.
For over 20 years, I’ve worked in healthcare as a provider across various communities, but it wasn’t until acquiring a disability myself that I understood the true meaning and depth of ‘access’. Understanding and dealing with physical barriers is crucial, but the bigger hurdles often come from the healthcare providers themselves.
The lack of disability awareness among health providers isn’t due to reluctance or lack of empathy. It’s a knowledge and skills gap. Our university courses and workplaces tend to be focused on discipline-specific education and training, which leaves a shortfall in disability awareness. This realisation, coupled with my lived experience as a dietitian with a disability, compelled me to jump at the chance to help develop the Access for All disability awareness course.
As someone with a disability navigating the healthcare system, I know the challenges can be monumental. Biases, both conscious and unconscious, incorrect assumptions, poor communication, and suboptimal understanding
of people’s circumstances often create substantial obstacles that can easily turn into deterrents to accessing healthcare. If healthcare access is challenging for someone with my vast health knowledge and literacy, the struggles for others must be immense, and at times insurmountable!
My unique perspective, straddling both consumer and provider experiences, fuels a deep obligation to enhance health providers’ capacity to deliver better care for people with disability. I believe Access for All has the potential to broaden person-centred care and aid in fostering genuine inclusion within healthcare and beyond.
Access for All has been a very rewarding role for me, and I feel fortunate to have been a part of it.
While there is still a long way to go before accessibility and inclusion are the ‘norm’ in healthcare, seeing the meaningful impact Access for All is having on both consumers and providers is exciting and gratifying.
My hope is that the impetus for accessibility and inclusion, for everyone, will continue and we can all live life as healthy and as happy as we all deserve, free from the barriers that prevent this from happening!
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Seeing the meaningful impact Access for All is having on both consumers and providers is exciting and gratifying.
Doctor with disability advocates for Access for All
Dr Dinesh Palipana OAM was the chair of the Access for All advisory group. His life experience and wisdom guided us towards improving healthcare for people with disability. Dinesh is a doctor and lawyer with a spinal cord injury and quadriplegia. He has witnessed firsthand how limited healthcare access, and a lack of disability awareness can create negative health outcomes for people with disability. Dinesh believes part of the solution lies in better training for healthcare workers.
While living in an Australian metropolitan centre in 2023, someone with a spinal cord injury and quadriplegia reached out to me. They needed a scan and had been looking for a radiology clinic with a hoist. Within a 150 km radius, covering millions of people, they found just one clinic willing to service them, but it was at least an hour away.
They contacted me for ideas because I too live with a spinal cord injury which affects my fingers and all functionality below my chest. I’m also a doctor, working in one of the busiest Australian emergency departments, so I made some inquiries but found limited options for my friend.
Situations like this are all too common. People with disability have challenges accessing primary healthcare and beyond, with these challenges highlighted, even exacerbated, through the COVID-19 pandemic. These issues lead to a myriad of consequences.
In a web report dated 5 July 2022, The Australian Institute of Health and Welfare (AIHW) noted that Australian adults with disability are six times more likely than adults without disability to assess their health as ‘fair’ or ‘poor’. According to the same report, people with disability are also more likely to access healthcare.
Most harrowingly, another AIHW study found that people under the age of 65 using disability services were 4.7 times as likely to die compared to the general population under the age of 65. What about potentially avoidable deaths? They are 3.6 times as high as the general population, after adjusting for age. With one in five or one in six Australians living with disability today, depending on the statistics we read, this is a problem.
Since having a spinal cord injury in 2010, and consequently living with barriers in many areas of life, including health, my eyes have opened to the experience of people with disability. Especially in the early years of the injury, I experienced near-life-threatening, potentially avoidable complications which led me to wonder about others, especially in difficult-to-access communities.
The disability community’s challenges led to the Disability Royal Commission. In its recommendations, one solution in healthcare was to enhance the ‘Education and training of health professionals’. Sydney J. Harris said, “The whole purpose of education is to turn mirrors into windows.” This is true of sharing the disability experience in healthcare too, as the healthcare workforce is disproportionately comprised of fellow citizens without disability. To turn a mirror into a window, we must understand each other.
This is why it has been a privilege to work with the passionate team at CheckUP Australia on Access for All. The team has included a range of expertise and the voices of people
with disability in their work, including employing people with disability within the team. The goal is to improve healthcare access across a range of settings in an attempt to bridge the healthcare gap.
Having grown up in a war-torn country, migrating to Australia, experiencing depression, and then a spinal cord injury, there is one thing about medicine that has inspired me greatly. It can transcend borders, prejudices, and vulnerabilities, and make a difference to fellow humans most in need.
“The goal is to improve healthcare access across a range of settings, in an attempt to bridge the healthcare gap.
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As healthcare professionals, this is our time to remember why we are here and use our purpose to contribute to a better future for those with disability.
From understanding to action: Disability awareness in healthcare
Access for All’s practicality and focus on real-life situations has enhanced Dr Dover’s healthcare delivery to help him provide even more insightful and holistic care to people with disability.
Dr Tom Dover, an experienced endocrinologist, dietitian, and exercise scientist, has been providing healthcare to communities across Queensland for over eight years. He acknowledges the importance of understanding the barriers to healthcare access experienced by people with disability. Health providers must understand these barriers so they can work towards reducing them. Dr Dover said he credits CheckUP’s Access for All: Disability awareness for health providers online course for providing him with, “a greater understanding of the impact of health services on people with disability.”
Dr Dover said the online course re-emphasised the importance of family, community, and support workers in healthcare for people with disability. While he has always understood the imperative of person-centred care, Dr Dover had several “lightbulb moments” after completing the course. He realised that various accommodations such as suitable transport, building access, accessible appointment scheduling, and appropriate clinic rooms are essential to accommodate the numerous types of disability, and therefore optimise health services for this vast cohort of people.
By gaining a better understanding of healthcare access barriers, Dr Dover feels more equipped to work with people with disability to set goals that are meaningful and achievable for each person. “It helps you to put the person in front of the patient,” he said.
The majority of Dr Dover’s caseload is diabetes. As diabetes management requires a multidisciplinary approach, he believes all health providers would benefit from completing Access for All. Furthermore, he said the course “should be compulsory for all healthcare providers who work with people with disability.”
Dr Dover praised Access for All for its comprehensiveness, practicality, and relevance to all healthcare providers. He emphasised that he was struck by the course’s “practical, real-life examples.” He said, “the course is full of practical stuff that impacts the day-today management of health conditions and is probably the best online course I have ever done.”
Dr Dover’s experience and insights emphasise the importance of healthcare providers understanding and accommodating the needs of people with disability to optimise their healthcare. The Access for All: Disability awareness for health providers online course serves as a valuable resource for all healthcare providers, equipping them with practical knowledge to deliver insightful and holistic care.
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The course is full of practical stuff that impact on the day-to-day management of health conditions and is probably the best online course I have ever done.
Rural health service embraces accessibility
Optimise Health and Wellness are a multidisciplinary, allied health service that specialises in delivering holistic, person-centred care. This story highlights how Access for All has assisted in maintaining the team’s philosophy of providing accessible care to all.
When designing and planning their new premises, accessibility was a top priority for Optimise Health and Wellness owner Kara Christopher. Encouraging her staff to complete CheckUP’s Access for All: Disability awareness for health providers online course ensured everyone was working towards the same goal of providing accessible, holistic, person-centred care for all clients.
Accessible healthcare isn’t limited to only the physical access requirements of a facility. The team at Optimise Health and Wellness in Ingham, North Queensland, are striving to offer a range of accessible healthcare options for their clients.
“From the moment a client enters our service, we want them to feel welcome and know that we will look after their individual needs,” Kara said.
“Our goal is to tailor our services to meet our client’s needs and ensure they have full access to the range of care we provide.”
Optimise Health and Wellness opened in 2018 with a small team of five. The positive community response meant the team grew quickly and now employs 44 staff members offering a variety of services including occupational therapy, mental health, personal training, support workers and therapy assistants.
The most popular staff members are the much-loved Hugo and Obi, Optimise Health and Wellness’ very own therapy dogs. Hugo and Obi are always available for a cuddle, and to support clients during their appointment. “Hugo and Obi bring a new dimension to the work we do here at Optimise Health and Wellness. We love seeing our clients, particularly the kids interacting with the dogs during their visits to the practice. They are valuable members of our staff,” Kara said.
The new premises has been designed with access in mind. Spacious, soundproof consultation rooms, indoor and outdoor
waiting areas, telehealth consultation rooms for client use as well as an open atrium reception area to welcome clients on arrival at the practice. The café provides an alternative space for clients to have coffee or tea and relax before or after their appointment. The practice offers yoga, children’s occupational therapy programs, and gentle exercise classes from the new rooms. There is also a therapy kitchen which offers cooking classes and rehabilitation options, and has been a welcome addition to the new space.
After the Optimise Health and Wellness team completed CheckUP’s Access for All online course, they were able to further improve the accessibility of their service by including the addition of an ‘accessibility support requirement’ question to their existing online registration form.
The team at Optimise Health and Wellness continually review their service delivery to ensure every aspect of the service is fully accessible and barrier-free. Access for All is a part of this strategy, and is woven into their staff training to ensure all staff and the services they deliver are disability aware.
From the moment a client enters our service, we want them to feel welcome and know that we will look after their individual needs. “ “
Disability: Not a word in Aboriginal culture
Uncle Willie Prince is a proud Wakka Wakka and Kalkadoon man, and an Access for All advisory group member. He was born in Cherbourg and was removed from his family and country to Brisbane. He shares his experience of living with disability as an Australian Aboriginal man.
Uncle Willie Prince, an Aboriginal man with cerebral palsy, knows better than most the complexities of navigating disability within two distinct cultures. Born in 1960 under the Native Fauna Act, Uncle Willie’s early life was marked by both illness and being a victim of the stolen generation. Falling ill 16 times before his first birthday, he was removed from his family and country at the age of two due to sickness.
Uncle Willie reflected on the profound impact of this decision. “Without my family being present, the State Medical Doctor decided my future with the stroke of a pen”, he says, “I was not a citizen of this country until the age ofseven – I was under complete control of the government.” Shortly after being torn from his family and community, Uncle Willie was diagnosed with cerebral palsy and put up for adoption.
After this was unsuccessful, he was transferred into the care of the nuns at the Xavier Home for Crippled Children, to receive ‘treatment’ and education rather than being returned to his community. This experience, along with the outdated terminology used to describe his condition such as ‘Cripple’, left a lasting impression. Uncle Willie said, “ When you hear offensive words like ‘cripple’, it’s insulting.”
Uncle Willie offers a unique perspective on disability within Aboriginal culture. “The Aboriginal person doesn’t know if they have a disability,” he explains. “If you can’t walk around, you still have a job to do in your village, you don’t have to stand to make fire.”
This concept of disability as ‘inclusion’ rather than ‘exclusion’ stands in stark contrast to the western view. “In Aboriginal culture, it’s hidden,” he says. “It’s simply just another person who is part of the community.”
This difference in perception creates significant barriers when accessing services like the NDIS.
“The Aboriginal person is at a disadvantage because they don’t know what they’re entitled to,” Uncle Willie explains. “Is it helpful to call oneself disabled? Or is it going to name and shame you in the community?”
Furthermore, the lack of cultural and disability awareness within healthcare can lead to frustration and feelings of alienation. Uncle Willie describes his experiences with medical professionals and said, “They come out with all these questions, and I’m left thinking, What?... What?... What?... What! I came here for assistance, and I end up getting a survey.”
Recently while attending a hospital with his support worker, Uncle Willie encountered a receptionist who ignored him and spoke only to his support worker. He said, “I was the one that needed the appointment, not my support worker – my support worker was only there to assist me. It made me feel like a nobody.”
Uncle Willie’s vision is clear: a healthcare system that is both accessible and culturally safe. “I want to go out of my house, go down the street and access my local health clinic at the hospital. I want it to be accessible and I want the workers to have a basic understanding of disability and Aboriginal culture,” he said. “I want to be treated as a human being and not be treated as a number.”
This is where Uncle Willie’s work with Access for All comes in. He has brought his lived experience of disability and culture to aid in the development of the online disability awareness course, particularly in addressing the unique challenges faced by First Nations people with disability. Uncle Willie says, “things like Access for All are very beneficial –getting online and viewing videos on how to communicate and cater to people with disability and from different cultures makes healthcare much more welcoming.”
He also feels that there has been a noticeable difference in the last few years around awareness and communication and believes that Access for All is part of that impact.
Uncle Willie’s story is a powerful reminder of the importance of intersectionality and the need for training. It’s a call for a healthcare system that recognises and celebrates the unique experiences of people like Uncle Willie, where they are treated based on who they are and not their disability.
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Things like Access for All are very beneficial – getting online and viewing videos on how to communicate and cater to people with disability and from different cultures makes healthcare much more welcoming.
Increasing healthcare access for First Nations people
Simon Tame is a Brisbane based optometrist who provides services to rural and remote Indigenous communities throughout North Queensland. Read about how he and his team improved healthcare accessibility for a First Nations man by applying the knowledge, learnings and understanding gained from completing Access for All.
When Simon Tame heard about Access for All: Disability awareness for health providers online course, he thought it was probably something he should complete, but wasn’t entirely sure of its relevance. Once Simon commenced, he realised there was so much more to accessibility than he first thought.
Being based in Brisbane and providing outreach services to rural and remote Indigenous communities in North Queensland, Simon reflected and said, “The training spoke to me in a few different ways.” When he thought about the travel his patients from remote communities in Far North Queensland were expected to do to access his optometry services, Simon realised he had been making some big assumptions regarding access.
“I have always found travelling easy and I enjoy discovering new places. But, as I worked my way through the Access for All online course modules, I realised travelling is not easy and exciting to everyone.”
People who need to leave their community to access treatment can find themselves feeling overwhelmed, anxious, scared, and alone. In addition, arranging transport, accommodation, support workers or carers can add to the unknown of the process and outcome.
Simon also commented that “communication may not be verbal, or English may not be their first language and we need to adapt and individualise treatment for each person who comes through the door and create a safe and welcoming environment for them.”
After completing Access for All, Simon contacted his administrator to advise they needed to do better. “We needed to create a door-to-door experience for our consumers coming to Weipa for cataract surgery, cease making assumptions and ask our consumers what their access needs were and what will make their appointment and overall experience more comfortable and accessible for them,” Simon said.
The course enabled Simon to reflect on the upheaval his service was causing consumers when they changed surgery days or delayed treatment. He realised that changing service delivery days wasn’t a big deal to them, but for consumers, it was creating a new set of challenges. He said, “A change of day or week for us was done without considering the impact on the consumer who is left to quickly try and reschedule everything, and in many cases, their carer/support worker, to accompany them at the new day and time. They may not be available to accompany the consumer or family members may not be able to travel with them on the new day due to other commitments they have.”
We need to ask our consumers what their access needs are and what will make their appointment and overall experience more comfortable and accessible for them. “ “
Ultimately, Simon wants to create a customer experience where he and his service are recommended. Simon said, “I recently had a First Nations patient in his 60’s present to the clinic requiring urgent surgery to ensure his sight was not lost or compromised. He is an artist and appeared to be an outgoing, confident man at the appointment.
I immediately thought I could help him that day!
I knew I could arrange for the surgery to be done the following week in Brisbane so I set about making arrangements. But I immediately observed a change in his disposition. He seemed worried and frightened to go to Brisbane and commented he needed to get his head around the idea first. Normally, I might try to reassure him and continue making the arrangements, thinking I am doing the right thing.
But I needed to stop, listen and realise I was layering my assumptions over him, and it wasn’t appropriate.”
Simon and his team changed their approach –they worked collaboratively with this man and his family and arranged for the surgery to be done in Weipa where his carer could be with him. He reported feeling more supported, and despite feeling anxious about the surgery and outcome, he felt Simon and his team listened to him and accommodated his access needs, leading to a successful surgical outcome.
Because of Simon and his team’s personcentred, accessible healthcare, this man has now received successful cataract operations on both eyes, and is back doing the artwork and woodcarvings he enjoyed before his cataracts caused his vision to deteriorate.
Embracing the Spectrum: For my son and a better tomorrow
Lived experience and the personal stigma encountered as a child has motivated Laura Zimmerman - Director at Macintyre Health, to be brave and share her story about autism and neurodivergence. Her story emphasises the importance of understanding and embracing the strengths of individuals with autism and neurodivergence. Her story also highlights how CheckUP’s Access for All course can help health providers reduce barriers and create awareness.
Macintyre Health was always built with inclusion for those living with disability and neurodivergence in mind. Our commitment to person-centred care and flexible care delivery that accommodates individual and community needs has proven invaluable in enhancing our positive impact on communities across Queensland. It is lived experience that has shaped our wholehearted belief in improving healthcare access for vulnerable populations such as those with disability.
This is my story. I remember it well - it was 1991 and I was 6 years old, standing next to my mother in her favourite jewellery store in our small suburban town. “You will have to come to terms with it,” the woman told her. “She’s not smart. You will have to make plans for this. It’s not fair to you and it’s not fair to her.” My speech was delayed until I was 8 years old. While I have encountered numerous levels of stigma throughout my life, this comment in particular, when I was 6 years old, has never left me. Please never underestimate the power of words!
I have only recently started discussing my synaesthesia. I work in diabetes and metabolic health where everything is graphs and numbers;
neurodiversity can be an advantage in this type of work. My singular focus allowed me to achieve high marks in my post-graduation qualifications, start multiple businesses, and run clinics across half of Australia. People living with autism or neurodivergence are more than their perceived list of deficits. When understood, we contribute greatly to the world around us.
Approximately 4.4 million Australians have a disability. Of these, around 10% report experiencing disability discrimination so profoundly that they avoid day-to-day activities that people without disability can quickly negotiate, including healthcare access1.
This contributes to an association between disability-based discrimination and self-rated health and psychological distress.2.
CheckUP’s Access for All online course creates awareness of the barriers people with disability experience when accessing healthcare and provides strategies and tools to help reduce these barriers. In turn, this assists health providers to enhance their person-centred care for people with disability.
The Access for All online disability awareness course resonated with me professionally and personally. As a healthcare provider, it equipped me with valuable tools to improve my service provision. On a personal level, it also gave me the confidence to disclose and reflect on my family’s struggles with disability. As such, over the past year, I’ve chosen to reveal my autism journey, driven by my son’s diagnosis and the desire to reduce the stigma for him and others like us in accessing healthcare. This transformative decision has allowed me to unmask my struggles and celebrate the strengths arising from my neurodivergence.
As a business owner living with autism, ADHD, and dyslexia, I am grateful for the chance to share my experiences with disability and neurodivergence. My journey has taught me the importance of recognising that individuals with firsthand knowledge of their conditions are the true experts in their lives.
I also wish to thank CheckUP for enabling me the opportunity as a health provider to be vulnerable and open, and to examine how my experiences with disability can help me help others overcome stigma and assumptions. Doing so can create a more inclusive and compassionate society by embracing our unique talents and breaking down barriers. Furthermore, our openness about our lived experiences with disability fosters understanding and acceptance and empowers others to share their stories.
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My journey has taught me the importance of recognising that individuals with firsthand knowledge of their conditions are the true experts in their lives.
We can build healthier, more vibrant communities that celebrate and support disability and neurodiversity. Living with autism, ADHD, and dyslexia, I am grateful to be part of a community dedicated to creating a more inclusive and equitable world for all. By recognising and valuing the expertise and perspectives of those with firsthand experience, we pave the way for a brighter future for everyone.
References
1. Australian Institute of Health and Welfare (2022) People with disability in Australia 2022, catalogue number DIS 72, AIHW, Australian Government.
2. Krnjacki L, Priest N, Aitken Z, Emerson E, Llewellyn G, King T, et al. Disability-based discrimination and health: findings from an Australian-based population study. Aust N Z J Public Health. 2018 Apr;42(2):172–4.
Combining lived experience and expertise to develop Access for All
Dr Sharon Boyce is an educator, author and advocate who lives with disability. She is Chair of the Queensland Disability Advisory Council, the Chair of Queenslanders with Disability Network and Vice President of Physical Disability Australia. As a valuable member of the Access for All advisory group, her expertise and lived experience helped shape the online disability awareness course.
I wasn’t born with a disability and so as my disability began to impact on my life, and my neck broke because of my juvenile arthritis, I began to look at my life differently. The doctors did not think I would survive the surgery, but when I did, and when I was given a second chance at life, I began to look at the goals I wanted to achieve very differently. I began thinking about what was really important so I could be part of making a real difference to disability awareness and inclusion and help educate people as to how we could become a more inclusive society. This is how Discovering Disability and Diversity was born. Discovering Disability and Diversity is a program that I have developed. It is aimed at increasing disability inclusion within society. The program covers all ages and uses simulation of key disability areas and personal stories to educate and engage participants to create real learning.
I was approached by CheckUP because of my experience, expertise, and passion for disability education. They had just received funding to develop an online disability awareness course for health providers.
The CheckUP team, and other Access for All advisory group members worked together to develop a course that made a real difference for people with disability.
Access for All works at breaking down preconceptions of what disability is. Disability is different for every person and therefore the engagement and linkage with the variety of activities and modules in the course makes the process all the more real. It utilises and combines the lived experience of individuals with disability and the expertise of health providers. The disability awareness course was shaped by a group of people who passionately believe in creating real change and real understanding of key disability areas.
One of the central features of the program is the way it links health providers’ understanding of disability to their work. There were gaps in the learning for health providers on disability awareness and inclusion, and Access for All was able to help fill those gaps. The course shares a variety of perspectives, lived experiences, and learnings about disability.
The Access for All advisory group brainstormed and collectively researched how we could share the importance of disability awareness among health providers and help them to feel confident when delivering health services to people with disability. We wanted to reach as many people as we could and share the information and education that is necessary for people to understand what disability is and how it impacts on us and society.
I was so glad I was able to be part of the process and continue to be part of sharing how this program can make a real difference and support true inclusion for people with disability. It was a privilege to be part of the team that helped shape what the Access for All program is today.
Access for All works at breaking down preconceptions of what disability is.... it utilises and combines the lived experience of individuals with disability and the expertise of health providers.
Reframe disability from a negative to a positive
Emma Lynam’s journey highlights how health provider biases, conscious or not, can potentially have life altering influences. Luckily for Emma, her mum’s unwavering support and advocacy allowed her to reach her full potential and have a wonderful life, rich with all that she loves doing.
Emma Lynam is a local businesswoman in Townsville. Her business, ‘Master Shredder’ is a confidential shredding service. This service is unique as it’s mobile, meaning all your confidential documents are shredded onsite at your business – no documents leave until they have been destroyed. Emma has two commercial crosscut shredders and an iLoad van fitted out to provide easy loading. All the shredded paper generated by the business goes to a local farm where it is used as mulch. This helps the farmer to control weeds in a very cost-effective way. But there is something you don’t yet know about Emma.
She also just happens to have Down syndrome and autism, is deaf and has limited verbal communication. Emma has a great life and enjoys travelling, dining out, and going to local concerts, just like any other young person her age.
Like most people born with a disability, Emma’s birth and ear ly life were overshadowed by medical ‘experts’. Her mother would eventually come to understand that these particular ‘experts’ were misinformed. After undergoing surger y, Emma experienced some difficulties and had to be resuscitated.
Doctors advised her mother that due to her having a disability they would not resuscitate her again. Doctors also suggested that her mother leave her at the hospital, and they would find a place to put her.
Emma’s mother did not listen to any of this advice, took her daughter home and not only loved her but held a big vision for her.
Let’s take a moment to unpack all of that. Emma’s mum was a fairly strong person and wasn’t influenced by the doctor’s comments. But what if she wasn’t a strong lady, what if she had done as had been suggested and left her daughter at the hospital? Well, you wouldn’t have read the first paragraph of this story.
Medical professionals hold a great deal of power and persuasion, particularly at the time of birth. Emma’s mother tells it like this, “all medical professionals need to have an attitude of assumed competence and possibility for all their patients no matter how the situation might appear.” She also suggests that doctors need to train in unconscious bias.
She says she sees Access for All as a great initiative as it is helping medical professionals to reframe disability from a negative to a positive.
Emma’s mother said, “there are many things that need to change for people with disabilities to have the good things in life, but changing the mindset of medical professionals will have an immediate impact because of their influence.”
Imagine the situation where a group of medical professionals have just read about Emma’s journey, and then assist at the birth of a little boy with Down syndrome. Just imagine the impact they could have on the family who are struggling to deal with their situation, if the medical team speaks of hope and possibility, and assumes competence. In that moment that team have just helped to shift the reality for the family from tragic to infinite possibility.
This has bigger societal implications. Imagine the family who has been told that their child will not be able to do anything and will always need support. The seed of despair has been sown and so the family go on with their lives believing and living as though their child is a burden and won’t be able to do anything. Holding that belief creates their reality and so their child needs lots of formal paid support.... The family thinks this is true, because the ‘experts’ told them it’s so – that child’s body will grow, but their world won’t.
“ “
Access for All is a great initiative as it is helping medical professionals to reframe disability from a negative to a positive.
Delivering culturally responsive and disability aware healthcare
Lachlan Smith is a highly experienced Optometrist and Audiologist at Smith Eye and Ear Solutions. He shares his story about how Access for All helped him become more aware of the barriers experienced by people with disability when accessing healthcare. As a result of completing the online course, he has increased access to the health services he provides to people with disability.
“Another box-ticking exercise,” was Optometrist and Audiologist Lachlan Smith’s first thought when asked to complete CheckUP’s Access for All: Disability Awareness for Health Providers online course.
On finishing Access for All, Lachlan found he gained several take-home messages including the need for health professionals, like himself, to focus on personalised care, and not to assume what a client’s needs are. Lachlan said, “The course really made me think about the need to acknowledge the diversity within a disability and not assume one person with a certain type of disability is the same as another person with the same or similar disability.”
“I hadn’t always considered people with hidden disability. The training helped me realise the need to ask my clients what their access needs are, and not assume that because they didn’t say anything everything was satisfactory with their clinic visit,” he said.
Another learning Lachlan embraced was provided in Access for All’s - Cultural Considerations module. This module is an important reminder of the need to ensure a person’s cultural background is always considered, to optimise their healthcare outcomes.
People with disability come from various cultures and backgrounds. This requires consideration in their healthcare.
Acknowledging cultural norms and cultural views of disability is important to ensure people with disability (from all cultures) can access care in a culturally safe and appropriate way. For health providers, this means always asking about the best way to deliver their healthcare service so individualised care is optimised.
Since completing Access for All, Lachlan and his team have initiated some changes in how they offer their appointments including, asking clients if longer appointments are required and ensuring they have the necessary transport to attend their clinic appointments. Lachlan is now also blocking off time in his outreach visit schedule to offer home visits to clients who find those appointments far more accessible. Home visit services can reduce the stress and cost for clients who may need to organise a carer or support worker to drive them and assist with access to their appointments.
Furthermore, providing health services in the home, where possible, can also decrease the anxiety clients can experience when attending a clinic environment for an examination or procedure.
Access for All has improved the already high-quality service delivered by Lachlan and his team at Smith Eye and Ear Solutions. By accommodating the needs of all their clients, including people with disability, they are decreasing healthcare access barriers and thereby contributing to health equity.
The course really made me think about the need to acknowledge the diversity within a disability and not to assume one person with a certain type of disability is the same as another person with the same or similar disability. “ “
Smiles for all: Accessible dental care
Access and Ability is the motto at Townsville-based dental surgery, MYTOOTHDOCTOR™. By embracing inclusion they can provide high-quality dental care to people of all abilities. The Access for All team were lucky enough to collaborate with MYTOOTHDOCTOR™ when developing the course. This contributed to the real-life focus of Access for All and helped demonstrate how access and inclusion are a necessity.
The accessibility innovations provided by dental practice MYTOOTHDOCTOR™ caught the attention of CheckUP’s Access for All team. Due to the accessible care they provide, MYTOOTHDOCTOR™ is a role model for other health providers. The Access for All team invited Dr Garret Robles, owner of the practice, to be involved in the development of the Access for All: Disability awareness for health providers online course. Dr Robles, his team, and practice feature in the Access for All course videos and discuss the strategies they use to provide accessible dental care for people with disability.
Oral healthcare is fundamental to people’s overall health, however accessing oral health services can be difficult for people with disability. Dr Robles aim is to improve access to dental care by offering innovative, accessible oral health services across North Queensland. “We wanted to offer a dental experience that was accessible and inclusive for all. My special interests include management of children with specific needs, kids with autism, children with developmental delay and other medical conditions, and treating very young children fearful of seeing the dentist yet requiring extensive dental care,” he said.
Dr Robels explained that “special care dentistry isn’t limited to people with physical disability. It encompasses a broad range of consumers requiring dental care. Quite a few of our clients have severe dental phobia, often recalling traumatic childhood dental experiences. We offer a relaxed environment, where we take a holistic approach to the individual’s needs to reduce their anxiety and ensure their dental experience with us is as positive as possible.”
As a part of their accessible service, MYTOOTHDOCTOR™ provides a compact mobile bariatric chair for people who require it. The bar iatric chair can be removed, leaving a platfor m allowing a wheelchair user to remain in their chair while receiving dental treatment without the added stress of transferring to a standard dental chair. This is particularly helpful for people who would otherwise require a hoist to mobilise from their wheelchair. The wheelchair-friendly dentist chair is the only one available from a private dental clinic in Austr alia.
“From the moment we receive a referral, or a client contacts our practice, we spend time building a relationship with them. We individualise their experience by asking what their access requirements are and what we can do to make their dental appointment positive.
Once we know more about them and their requirements, we can tailor their appointment appropriately. We may need to offer a quiet room with low lighting for the client to wait in. We may need to see them early or late in the day when their carer or support worker is available to accompany them. The client may also need information shared with them in a different format, via a communication device or in a different language. By tailoring our service to the person’s individual needs, accessing dental care becomes easier for them,” Dr Robels said.
An investment in mobile dental equipment has also enabled MYTOOTHDOCTOR™ to offer dental care to aged care facilities and rural and remote towns where dental services are not always available, plus home visits where required.
Dr Robles explained his philosophy of equitable and accessible dental care by saying, “When we talk about accessibility, we need to think about the ‘access’ and the ‘ability’ of our clients. Disability awareness training, like Access for All, plays an important part in health providers understanding the barriers people with disability experience accessing healthcare services, and assists us in making improvements to how we offer our ser vices to ensure healthcare is truly accessible for all.”
By tailoring our service to the person’s individual needs, accessing dental care becomes easier for them. “ “
Disability awareness leads to dignity, respect and equality
The Clinical Placement Coordinator at Buderim Private Hospital on the Sunshine Coast, Queensland, Joanne Castner, learned a great deal from Access for All. She has been able to apply these learnings to enhance her role and increase support for staff and students with disability so they can flourish in the workplace.
As the Clinical Placement Coordinator at Buderim Private Hospital, I have the privilege of working with a wide range of healthcare workers, from visiting students and tertiary academics to our team here in the hospital. I care deeply about the wellbeing of our students and staff, and I am committed to providing positive experiences for both learners and our preceptors.
One thing that this role has taught me is that everyone has a different life story, learning style, challenges and needs. Sometimes these include supporting a person who has disability. A challenge of my role is to encourage and support learning regardless of these differences.
The Access for All program has been a wonderful learning opportunity for me. It has highlighted the significant prevalence of disability within Australia and the many ways that disability may present. We have many supports, modifications and access str ategies in place at my hospital, but what really stood out for me in this program, is the way we can speak to and support people with disability to ensure dignity, respect and equality.
The Access for All online course has given me many skills to use when communicating with people with disability.
As the manager of a team of eight, I feel that I am better placed to role model inclusion and support of people with disability. I will also be recommending this program to my team, to create greater awareness and increase their skill and confidence in supporting our students and fellow healthcare workers.
Thank you for this wonderful learning opportunity.
What really stood out for me in this program, is the way we can speak to and support people with disability to ensure dignity, respect and equality. “ “
Improving nurses’ knowledge, attitude and confidence
The patient safety and quality team at The Wesley Hospital in Brisbane, Queensland utilised Access for All in their research project to successfully build the capacity of their nursing staff around disability awareness.
Patient Safety Officer, Amanda Cook, and Quality and Safety Manager, Katherine Jackman, collaborated on a research project at The Wesley Hospital, suppor ted by the Noel Kahler program. Their aim was to assess nurses’ knowledge, attitudes, and confidence in caring for people with disability, and to evaluate the effectiveness of Access for All: Disability awareness for health providers at improving these essential nursing skills.
The research topic is close to Amanda’s heart, as she and her two sons have autism. This lived experience has fuelled her passion for improving the lives of people with disability, as she understands the difficulties in navigating the healthcare system.
With this drive, Amanda and Katherine engaged 30 nurses from the Wesley Emergency Centre and the Day Surgery Unit. The nurses participated in a questionnaire to gauge their baseline understanding of disability care. Following the initial assessment, the nurses undertook the Access for All online course.
The knowledge gained from the course led to marked improvements in disability awareness and confidence in caring for people with disability. Prior to completing Access for All, the majority of participants had not received any specific training in disability care (80%, n=24), and many felt their knowledge was outdated (76.7%, n=23). Pleasingly, after completing the disability awareness course, most of the participants reported their knowledge as current (90%, n=27), and all 30 nurses reported improvements in knowledge, attitudes, and confidence. These positive findings indicate the effectiveness of Access for All for improving disability awareness among nurses at The Wesley Hospital.
Amanda and Katherine also believe Access for All reinforces the importance of ongoing efforts to improve healthcare provider education and attitudes towards disability care. They stress the need for comprehensive training to create inclusive healthcare environments that cater to the diverse needs of all patients.
The study highlighted the importance of programs like Access for All for increasing healthcare providers knowledge and skills around disability awareness. It also highlights the priority that should be given to contemporary education and training within the healthcare system to foster inclusive healthcare environments, and subsequently improve health outcomes for people with disability.
While the study showed promising advancements, Amanda and Katherine believe there is a need for ongoing effort, research, and policy development to ensure inclusivity
in healthcare. Working in the areas of patient safety and quality, they know the importance of this, as negative healthcare experiences can lead to people with disability avoiding the medical care they need, which then results in poor health among this population.
The research project conducted at The Wesley Hospital, and the associated findings, emphasise the importance of disability awareness among health providers. Improving disability awareness will assist health providers to be better equipped to serve the diverse needs of the population and foster a more inclusive and equitable healthcare landscape for the future.
Access for All reinforces the importance of ongoing efforts to improve healthcare provider education and attitudes towards disability care. “ “
Access for All Improves Disability Awareness
Access for All was evaluated by the University of Melbourne. CheckUP was pleased to see that the disability awareness course did what it was developed to do, in that a statistically significant improvement in disability awareness was identified. Furthermore, almost all respondents (97%) reported an intention to improve the accessibility of the health service they provide. Health providers can feel confident that by completing Access for All: Disability awareness for health providers, they are benefiting from a Continuing Professional Development (CPD) activity that is evaluated, and is based on best practice and lived experience.
People with disability face many barriers when navigating the healthcare system1 and these barriers can be exacerbated when receiving services from healthcare providers who lack disability awareness. This was confirmed in the Disability Royal Commission’s report on the Education and training of health professionals concerning people with cognitive disability. The report highlighted health providers’ lack of disability awareness and suggested they partake in continuing professional development to reduce this shortfall.2
Since the launch of Access for All: Disability awareness for health providers over 950 people in the health industry have completed the online course. Evaluation of Access for All revealed a statistically significant improvement
in disability awareness, and 97% of evaluation respondents reported an intention to improve the accessibility of the health service they provide.
Evaluation of Access for All also identified improved awareness of:
• assumptions and biases (conscious and unconscious)
• the importance of considering intersectionality
• the need to involve people with disability, their support workers, carers and family members
• the importance of disability advocacy when providing healthcare.
Self-rated level of disability awareness before and after AfA
Reference
M=2.31 M=3.19
*Statistically significant improvement in disability awareness ON A SCALE FROM 1 – 4
1. Australian Institute of Health and Welfare. People with disability in Australia. [Internet]. Canberra (Australia): Australian Institute of Health and Welfare; 2020 [Cited 2024 April 18] Available from: https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/ health/access-to-health-services
2. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. (2023). Retrieved from https://disability. royalcommission.gov.au/public-hearings/public-hearing-10
The Access for All training is outstanding…It’s made me reflect on the many challenges faced by people with disabilities in accessing health service… – Practice Manager
I could highly recommend this program as we could all improve on our disability awareness, particularly when we can get caught up in our busy clinics and perhaps not be as accommodating as we could be.
Podiatrist
“ “
Excellent course that encourages reflection on any biases or poor understanding that we have. – Nurse
This course should be part of mandatory training for all staff.
Obstetrician/Gynaecologist
Scan the QR code to access the online course.
In addition to the online course, CheckUP in partnership with Queenslanders with Disability Network and Enabler Interactive have developed the Access for All App. The idea is to extend the learnings from the Access for All online course by practicing in a 3D simulated environment that allows the user to see what health services are like for people with disability. Simply choose a character (clinician, administrator, or person with disability) and work through short scenarios based on real life experiences of people with disability when accessing healthcare.
Search ‘CheckUP Access for All’ in your mobile app store.
People
with disability deserve equitable healthcare.
The Access for All online course and Access for All App combine lived experience and best practice to provide the opportunity to learn about and experience the barriers faced by people with disability when accessing healthcare.
Thank you to contributors
CheckUP is incredibly grateful to the many people who made Access for All: Disability awareness for health providers and Cases for Inclusion possible
To the Case Study Contributors:
Your willingness to share your lived experiences, or as healthcare providers who have witnessed the impact of Access for All (AfA), is both generous and compelling. Your stories demonstrate the importance and power of inclusive practices in transforming healthcare service delivery for people with disability. We are grateful that you took the time to tell your amazing stories that will influence others to become par t of the growing movement towards true accessibility and inclusivity in healthcare.
To the people who helped create AfA:
A heartfelt thank you to the dedicated individuals who played a vital role in developing the online course. This includes a vast array of stakeholders and consumers who shared their valuable expertise and insights, and the Access for All Advisory Group who guided us all the way through. Your combined efforts have resulted in an impactful online course that has helped increase disability awareness among healthcare providers.
To the AfA Course Completers:
We extend our sincere gratitude to the individuals who have completed the Access for All online course. Your commitment to improving accessibility and inclusivity in healthcare is truly commendable. By completing Access for All, you have empowered yourselves to provide better care for every person who comes through your doors, regardless of ability. A special thank you goes to those who went above and beyond by sharing feedback and encouraging their colleagues to participate as well. Your contributions have been invaluable in spreading the important message of accessibility and inclusion within the healthcare system.
To other contributors to AfA:
Please accept our deepest appreciation to everyone who played a part in bringing this project to life. This includes our funding body, the Australian Government Department of Social Services, and other collaborators and partners who have supported the initiative, such as Queenslanders with Disability Network, First Peoples Disability Network (Australia), and the Australian Disability Network. Your contributions, either financial or through partnerships and collaboration, have made Access for All a reality.
Thank you very much to every one of you. Access for All and this case study booklet, Cases for Inclusion, are a testament to what can be achieved by working together with collective passion and effort.
