Excellence in Practice: Voices for Better Care
At the National Centre of Excellence in Intellectual Disability Health (the Centre), we are working to make health care better for people with intellectual disability.
People with intellectual disability often face different health challenges, but too often, they don’t get the care they deserve.
This podcast is for healthcare professionals who want to improve their practice when working with people with intellectual disability.
In each episode, hosts Ricky Kremer and Raylene Griffiths speak with experts, healthcare professionals, and people with lived experience. They share real stories and practical advice to help you build your skills and confidence.
Each episode explores a key topic in health care, showing what good care looks like—and what still needs to change.
Better care starts with better understanding. By combining lived experience with expert insight, this podcast supports you to deliver more inclusive, respectful, and effective care.
If you want to give better care, and help make health care fairer for everyone—this podcast is for you.
Follow the podcast to join us as we work together to improve health care for people with intellectual disability.
Excellence in Practice: Voices for Better Care
Episode 5: Improving Health care for Aboriginal and Torres Strait Islander People with Intellectual Disability
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
For Aboriginal and Torres Strait Islander peoples with intellectual disability, access to effective and culturally safe health care is an important part of health and well-being.
Healthcare professionals have an important role in providing care that is respectful, culturally safe, and that meets individual needs. This includes understanding communication needs, supporting access to services, and recognising the range of factors that contribute to overall health.
In this episode, we speak with Kristy Petrie, a Gooreng Gooreng woman who works as physiotherapist in paediatrics alongside Aboriginal and Torres Strait Islander families across south-eastern Queensland. Her work includes supporting children to achieve meaningful goals while helping families navigate complex systems such as the NDIS.
We also speak with Madeleine Prasad, a Gunditjmara Wurundjeri woman who is a First Nations disability advocate, a member of the First Nations advisory group at the Centre and a member of the Deadly First Nations Shout Out Group.
Excellence in Practice: Voices for Better Care is a podcast by the National Centre of Excellence in Intellectual Disability Health (the Centre).
You can follow the Centre on Facebook, Instagram and LinkedIn.
Your hosts for this episode are Ricky Kremer and Raylene Griffiths.
This podcast includes artwork by Emily Crockford at Studio A.
To contact us about the podcast please email: podcast@downsyndrome.org.au
The Excellence in Practice: Voices for Better Care Podcast is intended for healthcare professionals, and the comments are of a general nature. The views, information or opinions expressed by individuals in these podcast episodes are their own and do not necessarily reflect the views of the Centre.
Excellence in Practice: Voices for Better Care is a podcast by the National Centre of Excellence in Intellectual Disability Health (the Centre).
You can follow the Centre on Facebook, Instagram and LinkedIn.
Your hosts for this episode are Ricky Kremer and Raylene Griffiths.
This podcast includes artwork by Emily Crockford at Studio A.
To contact us about the podcast please email: podcast@downsyndrome.org.au
The Excellence in Practice: Voices for Better Care Podcast is intended for healthcare professionals, and the comments are of a general nature. The views, information or opinions expressed by individuals in these podcast episodes are their own and do not necessarily reflect the views of the Centre.
Hello and welcome to Excellence in Practice. Voices for Better Care, a podcast by the National Center of Excellence in Intellectual Disability Health. Here we will be sharing real stories and advice from expert clinicians and people with lived experience on improving health care for people with intellectual disability. We hope you enjoy this episode. I'm Rickit Kramer, and I am co-hosting with Raileen Griffiths.
SPEAKER_03The National Centre of Excellence in Intellectual Disability Health recognizes and respects the traditional custodians of country across Australia. We acknowledge the deep and ongoing connection to land, waters, and community and pay our respect to elders past and present.
SPEAKER_01This podcast includes discussions about the healthcare experiences of people with intellectual disability. Some stories may include mentions of trauma, medical mistreatment, or discrimination, and could be distressing for some listeners. If you are uncomfortable, please take a break or skip this episode.
SPEAKER_04Hi, I'm Lauren. I am a guest host for Weyang and Wiki and for this episode. Thank you for joining us for this episode on the healthcare for a visional topic that is under favorite intellectual disability. Healthcare professionals have an important role in providing care. This is respectful, culturally shape and um their most individual um needs. In this episode we will be speaking to Christy Petra, a going woman who works as a physiotherapist in pediatric alongside Aboriginal and Torres Strait Islander families across eastern Queensland. Her work includes supporting children to achieve meaningful goals while helping families navigate complex systems such as the NDIS. We were also speaking to Madeline Passad, a um Gandhi uman, who is the First Nation Disability Advocate, a member of the First Nation Advisory Group at the Center, and member of the Daily First Nation Stout Out Group. Hi, Christy. Thank you for joining us today. Can you tell us about yourself and your experience working with people with intellectual disability?
SPEAKER_00Yes, hi. Thank you for having me today, Laura. My name's Christy. I'm a proud Gorangran woman, born and living on Cornemuka country. I'm a physiotherapist working in the pediatric space. Much of my career has been working alongside children and young people with intellectual disability and their families. My role goes beyond physical development. It's about supporting meaningful participation, independence, and quality of life in ways that are meaningful to each child and family. I've worked across multidisciplinary teams and seen how important collaboration and family-centered care are when supporting children with complex needs.
SPEAKER_04What are some of the biggest challenges when it comes to healthcare for a visional and toys to island of people with intellectual disability? How are these challenges specific for to first nascent people with intellectual disability?
SPEAKER_00I would say one of the biggest challenges is that the healthcare systems aren't often designed to meet the needs of people who sit at the intersection of multiple identities. So in this case, being Aboriginal andor Torres Rhode Islander and having an intellectual disability. There can be challenges with health literacy, language differences, and navigating complex systems, particularly when services are not culturally safe or inclusive. And also intellectual disability can be misunderstood, leading to diagnostic overshadowing, where physical or mental health concerns are mistakenly attributed to disability rather than being properly investigated. For Aboriginal Torres Strait Islander people, these challenges are compounded by the ongoing impacts of colonization, intergenerational trauma, and historical mistrust of healthcare institutions. When services don't acknowledge this context or actively work to build culturally safe relationships, people can disengage and miss out on care um altogether, which is really not okay.
SPEAKER_04Have you seen abridgmental and tourists are under people with intellectual disabilities struggle to get the health care or treatment they needed? What happened and what's what have been done differently?
SPEAKER_00So, yes, I've seen many situations where individuals struggled to access appropriate care, often not because of lack of need, but because the system wasn't flexible or responsive enough. In some cases, families weren't listened to when they raised concerns, or behaviors were misunderstood rather than explored as potential signs of pain, distress, or unmet needs. I've also seen instances where appointments were rushed, like communication wasn't adapted and cultural considerations weren't acknowledged. What should have happened is earlier involvement, what should have happened differently, is earlier involvement of family and community supports, clearer communication, and a willingness from healthcare providers to adapt to their approach rather than expecting the person to fit the standard systems.
SPEAKER_04Thank you for sharing that. Can you tell us about a time when you were able to work with a patient who has faced some of the challenges you saved earlier in the past? How do you make this experience positive for them?
SPEAKER_00I certainly can, Laura. Um so I worked with a child who had previous family found healthcare settings overwhelming and both the child and the family had disengaged from services as a result. There was a history of appointments that felt rust and stressful, which understandably made both the child and the family anxious. So to change both of this child's and this family's experience of receiving support, I lent into my Aboriginal ways of connecting through yarning, deep listening, and r uh relationality. So building a relationship that's built on mutual trust rather than a transactional in-out approach. The sessions were slower, more predictable, and guided by what made the child feel safe, often through play and routine. I took the time to listen to the family, understanding their priorities, and involving them in decision-making in every step of the way. So that way, therapy and support was happening with them rather than to them. By adapting communication, being flexible with goals, and allowing trust to develop over time, therapy became a much more positive experience for both the child and the family. The progress wasn't just measured in physical outcomes, but in the child's comfort, engagement, and willingness to participate, which ultimately led to much better outcomes.
SPEAKER_04Reflecting on your experience, Seth, how has your approach to care involved over time to provide more inclusive care for people with intellectual disability?
SPEAKER_00Oh, when you first leave university and start your career, it's really easy to focus on clinical outcomes and rigid treatment plans and home programs, like the bread and butter of what you've been taught at uni. You write out a tick box and follow it, follow that through. However, over time, that it's changed, my approach has changed. It's not focused so much on that rigid tick box anymore. I've learned that truly inclusive care requires a broader approach. My approach has evolved to place greater emphasis on listening, cultural humility, and partnership with families. So care is something that's co-designed rather than delivered. I'm much more aware of my own assumptions and more intentional now about creating spaces for family to share their knowledge, priorities, and concerns. The shift has helped me provide care that is more respectful, responsive, and effective for people with intellectual disability.
SPEAKER_04For other healthcare professionals who haven't worked with original and tourists peoples with intellectual disability before, what are some changes or suggestions you could make that could uh make um you could make that would help them improve their practice and deliver more effective care?
SPEAKER_00That's such a great question, Laura. Like thank you for bringing that one up. Um one of the most important things is to approach working with mob people with intellectual disability, any sort of difference even with you to yourself is to approach this work with openness and humility. You don't have to have all the answers, but you do need to be willing to listen and learn. Take the time to ask families what works best for them and don't make assumptions on understanding about understanding or preferences. Focus on a strengths-based approach. This is well documented to be the most effective form of practice for mob. Using plain language, visual supports, and flexible appointment structures can make a significant difference. Um, building relationships with Aboriginal health workers and community-controlled organizations is also crucial as they bring invaluable cultural knowledge and insight. This isn't just isolated to community-controlled health organizations, but also the extended community and family around the child if working with children, get to know them and get to know their culture and then and their knowledge. Another important suggestion is to consider for clinicians to develop their cultural capabilities.
SPEAKER_04Can you talk more about what is culturally safe practice? How do you go about adapting your practice to be more inclusive?
SPEAKER_00Cultural safety is the development of an environment, particularly like looking at health and workplaces where individuals feel respected, valued, and safe with their identity and culture acknowledged rather than um negatively impacted or denying. It's moving away from power imbalances, racism, and discrimination, allowing people to define whether they feel safe in that space. So looking in looking at an Aboriginal Torres Rhode Islander view of health and well-being, it's known as the social emotional well-being model. And it's a holistic, strength-based concept of health that extends beyond mental health to include connections to the body, minded emotion, family and kinship, culture and country. So it takes into a fact like the historical determinants, political determinants and social determinants of health, and how all these bits of information come in to make up one person. So rather than focusing purely on if the client has a sawny, what else is that could potentially be making the picture to make them up to their self and then impacting their health? I would say adapting my practice is sort of come in multi-parts. So one, spending time with my patients and clients, they really are because they are the experts in themselves and listening to the listening to the parents, um, because they are the experts in their child falling forward. But then working with my colleagues. Um, so working across our, I work in a multidisciplinary team. So working with my occupational therapists and speech pathologists and getting information with them about different, you know, communication modalities for like AAC, for example, regulation strategies and things like that to incorporate into my session. Um, and then and treatment planning, but then also working with other physios working in this space, like having a yarn with them, connection with them, and finding out what's working for them, strategies that they recommend. So a lot of different places to come with that. There is extra study that you can do that I've undertaken, like, and for example, through like courses, professional development courses through the Australian Physio Association. They've got some courses and there are other ones around that I've also undertaken as well.
SPEAKER_04Thank you for sharing that. What have people with intellectual disability taught you about how healthcare should be delivered?
SPEAKER_00I have learned so much from working with my clients with intellectual disability. I don't think I go a session without learning something new from working with them. Um they've taught me that healthcare in general works best when it's flexible, relational, and human. That we as clinicians need to adapt to people rather than expecting people to adapt to our systems. They've taught me that sessions should be paced appropriately, respectfully, and grounded in dignity. I've learned that communication is so much more than words. It's about observing, listening, and responding to everyone in ways that make them feel safe and understood. Um They've also taught me that success in healthcare isn't always about achieving predefined outcomes, but about supporting participation, comfort, and autonomy in ways that matter to the person and their family.
SPEAKER_04Is there any other advice you would give to healthcare professionals who want to make their practice more inclusive and accessible to people with intellectual disability?
SPEAKER_00Remember that inclusive practice isn't a checklist. It's an ongoing process of reflection and learning, um, both with cultural capabilities and just accessibility in general. Be willing to adapt, to make mistakes and grow for them. Don't be afraid to say the wrong thing. Ask. Find out how your clients, patients, families, children wish to be supported, addressed, and what their goals are. Seek feedback from these families and colleagues, especially those with lived experience or cultural knowledge. Um, at its core, inclusive care is about respect, curiosity, and partnership. When healthcare professionals commit to those values, they create spaces where people with intellectual disability are not just included, but genuinely supported. And I was one other thing I'd say is they never underestimate your clients with intellectual disability. They will surprise you every day and make it a joy to work with every day of how much surprise they can bring along and share with you every day.
SPEAKER_04Thank you for your time and for sharing all the great information.
SPEAKER_00Thank you for having me today, Laura. It's been great to hang out with you.
SPEAKER_04Thank you, Christy, for sharing your experience and story as a health professional. We will now hear from Madeline, who will say her experience in the healthcare system. And wise on um healthcare professionals.
SPEAKER_03Thank you for joining us for this episode on Aboriginal and Torres Street Islander healthcare. Can you please start by telling us about yourself and your work?
SPEAKER_02Yeah, hi Riley. My name is Madeline Prasad. I'm a Guja Tomara Wandering woman, and I like to do an acknowledgement to country. I like to pay my respects to the past that are dead and to alive here, and for doctors, lawyers, people in jail, drug addiction, and mob because you know, we're all we need a lot of help here today. And um, you know, we've got to stand up for mob and I thank you. And I have a very strong Catholic faith, and glory to brother boy, sister girls, the mob, the elders, and everyone. Thank you. Yeah, I do a lot of um different types of um consult work and I'm on different committees, and I like to help people and mob and especially understanding about disabilities and um the NIDS and racism. You can't be racist, and people in our community are very illiterate, so and cultural safety, awareness training, education and training. You need a lot of help. And so we've got to stand up like a good disability advocate and make it happen. But the best thing is having knowledge and training, not this academic jargon, less writing and more pictures, and good, clear communication goes a long way in a care plan with your support workers, with community, with your support coordinator, with anything you do, it needs to be easy and simple. But a lot of people find it scary and hard to stand up and make a change. You have to to make things happen.
SPEAKER_03Can you tell us about what your experience has been like in the healthcare system?
SPEAKER_02I went into the woman's hospital, the women's hospital, and I had like there's a path there for people with, you know, disabilities, and you know, if you've got bad depression or drug addiction, and they were really good. Um, the wing clinic with the sheree. I had my third baby there. They really supported me there, you know, give you stuff for your baby, link you into support if you can't do it, but there's a really good part there that helps people get the support they need and help them with housing. They're really there to support you and help you. The wing clinic at the Royal Women's Hospital, and I was very good and I listened and followed, and they really help and support people, not like these other bits, but I had a really good positive experience at the Royal Um Women's Hospital in the Wing Clinic, and I was a very good mum. And even if you do need help, they're there to help you.
SPEAKER_03Thank you for sharing your experiences. And we know that accessing effective health care for Aboriginal and Torres Strait Islander people with intellectual disability can be hard. What challenges have you had accessing health care or health care professionals when going to the doctor?
SPEAKER_02Well, you need to go to the doctor, you need to communicate, and they need to listen to you, not speak academic jargon, and they need to interact with they don't understand Aboriginal people and mob, and they they're very smart and academic, but we do things very differently. So they need to learn our training and knowledge to be able to communicate with us, or else it's awful. Going to the doctors, going to the hospital, good clear communication, you need. Not good clear communication. You need it's simple and easy. Good clear communication goes along with pictures and less wordy. Got engaged with um professionals without my verbal, now my written consent. That is a no-no. And they've done it to a lot of mob and not a lot of other people with intellectual disability in jail, you know, with an IBA, it's really wrong. They shouldn't do this. You can get into a lot of trouble, so you need verbal consent and written consent so they can speak to organizations about you. Some of their body language, you should look a client in the eye and you should be having positive expression with people with disabilities or brain injury. They shouldn't be far over in the corner and you're over here. It's not very engaging, and it's not a professional working relationship.
SPEAKER_03Can you tell us about a time when you felt listened to, understood, and comfortable with a healthcare professional? What did they do that made the experience a good one?
SPEAKER_02Well, I can coordinate my support with my psychologist, psychiatrist and OT, and my doctor. So we had a face-to-face meeting and it was for five hours. And so I sat there and I said, I'm in charge of my life. So can you please all listen? You need to learn and I need to educate you with knowledge and training. You don't have to educate me. So I said, This is what I need, this is the type of help I need. I'm educating you. Can you please listen and actually do it? And I had a really good positive experience sitting in the Turec pub with my support coordinator, the psychiatrist, my OT, and everyone. We went there for lunch, and I said, Excuse me, I was really happy. I finally got them all together. And I said, You're all amazing. You're all listening to me finally with communication, what I need to achieve and get done. And my support coordinator, my doctor, my psychiatrist, my psychologist, and OT were there. So we simplified it and I made it happen. And it's about me, not all of them, it's about everyone working together to achieve what we need to achieve. Listen to me, and things will happen. Easy flowing, easy practice. And I really was blessed. I made it happen. I can do it. It was such a positive thing for me.
SPEAKER_03Thank you for sharing your more positive experiences. When going to the doctor to get treatment, how can doctors make you feel more comfortable? Are there any tools or resources that healthcare professionals have used that help help you to bet understand and feel comfortable?
SPEAKER_02They need to, you know, read your file, really understand your dual disability, look good, easy language, good body, you know, look listen to you and not talk too fast because a lot of them talk academic language. Lucky I'm intelligent and smart and I'll ask a question if I don't understand anything. But a lot of people in mop and people with intellectual disability or brain injury are too scared to stand up and ask a question so they can feel really good and secure in their life. It's very scary out there, but the doctors have to listen to us. We're their patients. So they need knowledge and training, how to work with people with a brain injury or people with more more of any type of people with disabilities, because we can lead the way with my unique live experience. They need to listen.
SPEAKER_03What do you wish healthcare professionals knew about Aboriginal and Torres Street Islander health care when treating people with intellectual disability?
SPEAKER_02They need to listen to people, just don't throw people in the cycle, listen to a person, you know, what's happened in the past. Trauma from the past can carry on, you know. It's so wrong how they treat people. They need to like learn and listen. And less academic wording, let the person speak in the um meeting, like May speak in the meeting. Not all the professionals speak, it's May speaking how I'd like to be treated. Yes, absolutely. In doctors, lawyers, psych wards, the jungle, in mob, in community centers, you're a person and you need to be helped. So they need to listen to your unique lived experience. They might have academic degrees, but they don't know how to do cultural safety. They don't know how to engage with mental health workers, they don't know how to engage with lawyers, they need to engage with people and let the person pick who they want in their life to get professional help to make it all happen. You need education and training to work with a mob and to work with people with disabilities, brain injuries, and intellectual disability, or else you're not. And I said, you've got to be nice and polite, make it a bit more welcoming, or go out into the garden so that people can sit out in the and do cultural training. It's you, you've got to be like put yourself out there and face your demons head on and have a good working relation relationship with your client. Maybe pick some pictures around the office or outside or some music, make it more cultural plants.
SPEAKER_03Is there any other advice you would give to healthcare professionals who want to make their practices more inclusive and accessible to people with intellectual disability?
SPEAKER_02Listen to people with, you know, being aboriginal, easy reading, make a loving a positive experience, not a negative experience, and then engage with their care plan team and engage with them. It's about them telling their stories and connecting in a working relationship. You've got to make it easy, no jargon, no academic wording, lots of pictures, and less wording, and make them feel really included with their support network and their care plan. We can lead the way because we're unique, live the experience, or go out and tell community and the MPs how to respect mob and community, and how to educate and teach doctors, lawyers, police, and everyone. I belong to the Black Fellas Shout Out group. We've made a documentary and we educate organizations around about we've all got disabilities, but um, how to work, you know, culture safety training, seven deadly tips, and we're amazing and we're really good and we're getting it out there because governments, doctors, lawyers, police really know really don't know how to work with people with a brain injury or intellectual disability. We've been on the Black Fellow Shout Out group for about two years, and we get out there and we really um show parliament and government how we should deliver and do things, and they have to interact and make sure it happens because a lot of people don't know how to work with people with the mental health issues, disabilities, brain injury in the psych wards, in the doctors, in the police, in courts. So we need to get out there and show them how to do it with our all-unique lived experience. Knowledge and training and reading all their prior history before you make, you know, be nice in the surgery, all the doctors at the hospitals. You need to be love and friendly and kind and understand Aboriginal. And the key is having wisdom and knowledge and training. I really enjoy what I do and deliver, and I want to make a change in Aboriginal health, in the psych wards, in doctors with my seven deadly tips or through the black fellowship southern group. I have a lot of good traits about myself, and I've got unique lived experience, so I can lead the way and educate other people. Doing hard work pays off, going on all these committees. You must stand up and make a change. And the governments and organizations must listen to us because we can lead the way with our unique lived experience. And I'm proud to be an Aboriginal woman, and I'm proud to make a change for society and Australia. And there's a lot of red tape with Parliament. They need to engage and listen to us.
SPEAKER_03That's what we hope for, Madeline.
SPEAKER_02And I really enjoyed doing this.
SPEAKER_03I enjoyed it too. Thanks very much. Madeline, thank you for your time and for sharing your story with us all.
SPEAKER_01Thank you for listening to Excellence in Practice. Voices for Better Care. We hope you enjoyed the episode and learned more about delivering better care for people with intellectual disability. If you've been affected by anything discussed in this episode, please know you're not alone. Support is available. If you're in crisis or need someone to talk to, you can contact Lifeline at 131114 in Australia. To learn more about the work of the National Centre of Excellence in Intellectual Disability Health or to get involved, visit our website nceidh.org.