Health Ambassador Work

Olivia Sidhu was a member of the Australian Delegation to this year’s events at the 16th Session of the Conference of State Parties to the CRPD (COSP16). She attended the program in New York along with our CEO Darryl Steff, Health Program Manager Natalie Graham, and Board Chairman Angus Graham, OAM. 

Find out more about Olivia’s presentations and engagements here:

Many of the DSA advocates, including health ambassadors, employment ambassadors, and DSAN members celebrated World Down Syndrome Day 2023 at Parliament House on March 21^st.  

Hugo and Olivia met with Hon Ged Kearney MP (Assistant Minister for Health and Aged Care) to highlight some of the inadequacies that people with Down syndrome face in health.  

Hugo highlighted to Minister Kearney that “health professionals need to learn more about caring for people with intellectual disability.”

Olivia let Minister Kearney know that “people with intellectual disability want to be involved in the Centre of Excellence and want to be able to let you (the government) know if it is working or not.”

Naomi Lake and employment ambassador Eoin Gibson met with James Griffiths, Office of Minister For Social Services, to discuss Australia’s Disability Strategy 2021-2031.

Naomi also met with staff from the Australian Government Department of Education and shared her thoughts on inclusive education and the importance of making TAFE accessible for people with intellectual disability.  

Kimberly travelled to Devonport to present at the 41^st Speak Out Conference. The theme for this year’s conference was ‘Paving the Way’. Kim presented about how the Health Ambassadors are paving the way in health and educating health professionals about how good communication with people with intellectual disability makes a positive difference to their health experience and health outcomes. Kim shared with the audience how the Health Ambassadors had gained confidence, self-esteem and independence in their role.  

Educating professionals who are currently working within hospital settings is an important part of the Inclusive Communications Project. During October, Olivia and Natalie presented to the Epworth HealthCare Grand Rounds about the benefits of good communication and how reasonable adjustments make a huge difference for all patients with intellectual disability.  

“Thank you for enlightening us with this very insightful session, it was informative, and reminded us nurses that despite the hustle and bustle and the lack of knowledge on patients with Down syndrome, adopting the basics of respect, time, trust, empathy and kindness, we will get better outcomes with that bare minimum itself.“

Naomi presented about inclusive communication to the online lunchtime Webinar forum hosted by the Agency for Clinical Innovation. Naomi, who is in an accomplished author, shared her experience in health when the receptionist at a hospital handed her mother the paperwork to fill out rather than her. Unfortunately, preconceived stereotyping is one of the barriers people with Down syndrome face in health. Naomi and her colleagues work to educate all health professionals about how “all people with intellectual disability are individuals and should be treated as such”. 

Naomi’s message was heard by the audience, and one participant said that they will now remember to ‘Speak to each person individually.’ 

It was fantastic to share the strong message of inclusive communication in health with the team from Women with disabilities Victoria. Gillian presented online about the benefits of inclusive communication to health outcomes for people with intellectual disability.

Gillian shared with the team how a small reasonable adjustment to the way a nurse included her in a recent hospital admission, made a huge difference to her ability to understand and cope with the situation.  

For a second year in a row the DSA Health Ambassadors were invited to educate the nurses at QUT about inclusive communication. Caitlin and Gillian shared their experiences and gave the students fabulous tips about some reasonable adjustments they could make to their practice to improve the health experience and outcomes for people with intellectual disability.  

“I am now aware the importance of communicating to person with intellectual disability as their own individuals, be aware of the way you communicate, and the importance of right communication when caring for people with intellectual disability.”

Emily and Amelia have been working hard and promoting Inclusive Communication and the role of the Disability Liaison Officer at Monash Health. The Health Ambassadors educated staff at the Clayton and the Casey Campus of Monash Health, about how important it is to make sure that people with Down syndrome understand and are included in their own health.  

“I am thankful to them for presenting and teaching me to see this world from a different viewpoint and giving us knowledge about Down syndrome.“

One of the key messages that Hugo and Naomi shared with the College of Nursing and Health Sciences, is that people with Down syndrome want to be communicated with in a language they understand and use. The members of the audience were grateful for the opportunity to listen to their lived experiences. 

“Thank you for taking the time to come and talk to us, it was a great presentation and I look forward to implementing this into my future practice as a nurse.”

Naomi and Natalie were extremely proud to be able to present the message of Inclusive Communication for people with Down syndrome at the National Nursing Forum in Adelaide.  

“Amazing resources, excellently presented.“

“The importance of communication, education. The experiences of Naomi!!! Amazing presentation.  Learnt so much to enhance my approach and practice! In life and work.”

Earlier in 2023 the DSA Health Ambassador team met two of the representatives from the Loud and Clear – Self Advocate Group in Queensland who shared with the team the advocacy work they have been doing.

On the 23^rd of August Naomi and Olivia returned the favour and met online with the Loud and Clear team. Naomi and Olivia talked about what they do as DSA Health Ambassadors and the opportunities the role has given to them. It is always great to share experiences with other advocates for people with intellectual disability.  

Health Ambassadors, Amelia and Emily shared their stories in health and the importance of inclusive communication with nurses at Peter MacCallum Cancer Centre, Melbourne. The nurses commented that they had gained both an increased knowledge about Down syndrome and more confidence to better care for people with intellectual disability. One nurse commented that in the future they would:

” … be more mindful of including people with Down Syndrome in the decision making of their care.”

We invite you to listen to a podcast facilitated by the Australian Sonographers Association. Caitlin and Natalie shared with the Sonographers why is it important for sonographers to know how to communicate with people with Down syndrome. Caitlin also shared some helpful suggestions about what sonographers could do that makes a difference.

“Please make sure I understand and see if I have any questions, check-in with me.”

“Be friendly, SMILE and have a chat, ask me how I am going .”

Emily and Amelia received a round of applause after a session on educating future doctors about how to improve health outcomes for people with Down syndrome. The health ambassadors shared that effective inclusive communication matters, it assists to obtaining positive health outcomes, decreases anxiety and pain, increases understanding which results in increased knowledge and therefore better health outcomes.

“I will be more active in using inclusive language and making more of an effort to involve them in their health care decisions and giving them the more time and patience.”

The Faculty of Health at Charles Darwin University invited Alishia back for a third year to educate students. Alishia spoke about the skills required and the benefits of inclusive communication to improve the health of people with intellectual disability. Alishia shared with the students that she and “many of her friends want to be healthy, productive citizens in Australian society and [they are] looking for [health professional’s] help.

“I think it was a beautiful presentation and very beneficial – keep spreading your knowledge and information to build awareness!“

“It was fantastic to get the lived-experience perspective from Alicia. Alicia, you have great wit.“

The mental health of people with Down syndrome is often overlooked by health professionals, but not by the future psychologists from Deakin University. Kimberley shared helpful information to assist the students become more inclusive practitioners and include people with Down syndrome in their own health. Kimberley told them:

“When I understand it makes me feel more comfortable and I can answer your questions better.”

One student commented:
“Thank you for your time and insights and sharing your guidance.”

Emily and Amelia were invited back for a second year to educate the 2023 Disability and Inclusion students at Deakin University. Emily and Amelia’s stories of their health experiences made a positive impact on the students’ knowledge and understanding of inclusive communication. 

“I just wanted to thank them for taking the time to come down and talk to us, being a small class I hope they know their words impacted all of us in a positive manner.”

Naomi educated the students online from the School of Health and Social Development. The students were both engaged and grateful to Naomi for sharing her knowledge and experience.

“Thank you so much for taking the time to talk to us and share your lived experience, it was incredibly insightful.“

Effective inclusive communication skills are very important for anyone who wants to work with people with Down syndrome and other intellectual disability. Caitlin shared with the students at Tas TAFE that:  

“People with Down syndrome want trust and respect and good communication … and so do I.“

Kimberley Adams joined DSA CEO Darryl Steff and ACT DSA CEO Shannon Kolak in meeting with the Hon. Mark Butler MP. Kimberley shared key points with the Minister on improving the health of people with intellectual disability in Australia. Here are three of Kim’s main points.

• Health professionals need to include us in all conversations about our health. 
• Health professionals need to learn more about intellectual disability, and we can teach them. 
• Annual health checks can help.

Health Ambassador Amelia educated over 130 nursing students at Melbourne University. Amelia shared her story of how nurse Ella made her feel safe and calm in hospital after Amelia had a stroke at the age of 19. 100% of the students who answered the evaluation said that the education session had given them more confidence to care and work with people with intellectual disability.

“I think remembering to be patient and take that extra time to get to know the person with an intellectual disability so I can make reasonable adjustments for them while they are in my care.“

Health Ambassadors Amelia and Emily headed to Kyneton Hospital to educate staff across Central Highlands Rural Health. Some staff were onsite and others online. The staff learnt how small reasonable adjustments to practice, can have a huge impact on the experience and health outcomes of people with intellectual disability.  

“I think it is important that our medical teams hear from the Ambassadors to understand more.“

“[I learnt] that our medical staff do very little training – therefore sessions like this can assist our employees in providing a better service.”

Kimberley Adams met with the ACT Minister for Health, Rachel Stephen-Smith, and other senior ACT Health officials. Kim spoke to the minister about the need for more education for health professionals in intellectual disability.

“I would like health professionals to learn more about how to better communicate with people with intellectual disability. It’s all about good communication.” 

Hugo and Natalie were invited back to the University of Adelaide in 2023 to educate a new cohort of nursing students about the benefits of inclusive communication in healthcare. The feedback from the presentation was overwhelmingly positive and the students felt more confident to care for and work with people with intellectual disability.  

“Extremely informative and interesting. Will definitely support my future nursing.”

Olivia presented to the first-year medical students at Bond University. Olivia shared her favourite quote from Cinderella – “Have courage, and be kind.” She also shared how important it is for doctors and healthcare workers to be kind and include us in the conversation. 

Bond University, Faculty of Health Sciences & Medicine are working with DSA to evaluate the Inclusive Communication presentations. The report will be available later in the year.  

Hugo gave an online presentation to Citizen Advocacy South Australia. He shared what makes for more inclusive communications and how clients can have inclusive interactions with health professionals.  

Alishia won two awards at the 2022 Northern Territory Disability Inclusion Awards for Excellence in Rights Promotion and the Overall Award for Excellence.

Here is a short clip about what Alishia does for her community and for all people with intellectual disability: https://youtu.be/TwctUQ_Os-g

Naomi, Gillian and Caitlin presented to the first year nursing students at the University of the Sunshine Coast, at three separate seminars over three days.

Each presentation was online, and in total the Health Ambassadors talked to over 700 nursing students.

After attending the presentation on Inclusive Communication, one student said: “It occurred to me that the patient, regardless of who they are or their circumstances, should be priorities, rather than discussing with their family.”

In late November, Olivia and Rohan presented to the national PANNDA Conference about the DSA Inclusive Communications Project and the Health Ambassadors’ work.

Their presentation highlighted the benefits of the project and the positive impact that the Health Ambassadors are making on the health of people with intellectual disability. When asked what was a highlight of the presentation, one attendee said: “Knowing the team is doing great and teaching us [health professionals] on how to help and communicate with people with intellectual disability.“

The last presentation for 2022 was at Bond University to the first-year medical students.

Olivia shared her message that “Health care workers can be better at their job if they listen and be kind and always respect others.”

Bond University, Faculty of Health Sciences & Medicine are working with DSA to evaluate the Inclusive Communication presentations.

The Down Syndrome Australia Health Ambassador team is recognised for their tireless efforts to inform and educate healthcare professionals and students on how to include people with Down syndrome and intellectual disability in their own healthcare outcomes.  Find out more on the HESTA website.

Caitlin traveled to Launceston to educate the Tasmanian Department of Health THS Hospitals – North, about the benefits of inclusive communication in the health of people with Down syndrome. Caitlin’s message about the positive impact that reasonable adjustments can make to a person’s experience resonated with the audience. 

“I will be patient, make time, get to know them, be kind and remember that they deserve the care that we all do.”

“Enjoyable and relevant to my practice.”

The Nursing students at Queensland University of Technology listened intently to Gillian’s presentation on Inclusive Communication. After the presentation they commented that they learnt:   

“… how important it is to use inclusive language and how easy it is to make reasonable adjustments to make sure everyone feels supported and included.”

The Victorian Branch of the Australian Nurses and Midwives invited the Health Ambassador program to present at their 2022 virtual conference. Naomi presented and shared her experience in health, to over 200 nurses about the benefits of Inclusive Communication. The feedback received was fantastic.   

“This should be mandatory in all health professionals’ undergraduate courses.”

“Loved the presentation, the honesty, openness and being real. It has broadened my understanding immensely.”

Alishia presented to the Occupational Therapy Students at Charles Darwin University in September. She shared her stories in health and some tips and tools that they may be able to use to include people with Down syndrome in their own health outcomes. Alishia reminded the students that “… it is my body, my life, my choice and it is all about good communication.”   

“Health treatment from the perspective of people with a disability…”

“Alishia is a great advocate, answered questions so well, and was very insightful.”

In late August, Gillian presented two of three presentations to the Central Queensland, Wide Bay, Sunshine Coast PHN (the third in early September). The PHN staff believes that to educate health professionals about how to improve health outcomes for people with Down syndrome and intellectual disability, they need to understand also.   

“All of us are responsible for the better approach to inclusive communication.”

“Thank you for trusting us with your stories and thank you for sharing your valuable knowledge.”

Amelia and Emily also hit the road and presented face to face to the 2022 second-year Occupational Therapy students at Deakin University. They were invited back after the success of last year’s online presentation to the 2021 2^nd year OT students. 

“Thank you. I genuinely appreciate Em and Amelia’s honest and insightful experiences.”

“Communication is essential to meaningful engagement. Everyone has capacity to communicate.”  

Olivia traveled to rural Armidale NSW, to deliver a presentation about how inclusive communication in health makes a difference to people with Down syndrome and their health outcomes.  Olivia spoke to almost 200 medical and pharmacy students at the University of New England. When asked how they perceived the presentation may affect their future practice, attendees said: 

“I will more consciously check in with people with intellectual disabilities to confirm that they understand what I’m saying.”

“Incorporate different ways of sharing information and check in more frequently.”

On August 12^th the NT PHN held the Compass Conference NT – Navigating the Way Forward. Alishia spoke to the attendees on Day 2 of the conference. She shared her experiences and how to practice inclusive communication. When asked what they learned from the presentation, many commented: 

“Communication strategies for working with people with an intellectual disability.”

“Such important messaging – thank you.”

Alishia presented at the Diversity Grand Round at Darwin Hospital to health practitioners. Alishia’s presentation highlighted to many listeners that inclusive communication really does make a difference. 

“Reinforcement of good principles to communicate with all clients.” 

“Everyone should have access to a presentation of this quality.”

Alishia presented about the benefits of inclusive communication in health and the inclusion of people with Down syndrome and intellectual disability in their own health

“I am so grateful for the powerful message you and Alishia are sending to health students and health professionals, and I’m sure you gave our students some important things to consider about how they work.”

Naomi and Emily spoke for the seminar series Reproduction in Society, which was hosted by the Monash Bioethics Centre. ‘In Conversation with Emily Porter & Naomi Lake’ the Ambassadors shared their views on prenatal testing. 

“It was such a great and insightful conversation and we’ve had really wonderful feedback.” – Monash Bioethics Centre

Kimberley presented to the University of Canberra‘s Faculty of Health staff and students about how inclusive communication makes a difference to the experience and health outcomes of people with Down syndrome and intellectual disability. 

One attendee said, “Thanks very much for spreading awareness and working hard to improve the lives of those with Down syndrome or other intellectual disabilities in the future.”

Naomi presented virtually to the Professional Association of Nurses in Developmental Disability Australia Inc. about the importance of having a person-centred approach to healthcare, sharing her personal story of what it is like to navigate the healthcare system as a person with Down syndrome.

“Thank you for sharing your lived experience, it was a great presentation,” shared one attendee from the Association.  

Emily and Amelia teamed up in Melbourne to present to two groups of Deakin University Health Sciences students in online and face-to-face presentations.

The two Ambassadors taught the students the importance of improving the communication between people with intellectual disability and health workers in the environment by eliminating communication barriers as much as possible such as the use of medical terminology.

“I am a grown woman and I should be a part of making decisions that affect me,” Emily told the students.

Olivia and Rohan delivered their first face-to-face presentation to the Eastern Sydney Mental Health Professionals’ Network. They talked about how including people with Down syndrome in their own health conversation can make a difference to health outcomes.

They both received positive feedback for their presentation: “I will be aware of my own forms of communication when working in both clinical settings and when in the community.”

Alishia presented virtually to Charles Darwin University speech therapy students, and told them they should be talking “to the person [with intellectual disability] in words they will understand.”

When asked what they would do differently in their own health practices now, one student answered: 

“Hearing her experiences and what helped break down the barriers she faced really put into perspective changes I can make going forward in my practice.” 

Emily and Amelia presented at an online forum to the Melbourne University nursing students. They received fantastic feedback and have been invited back next year.   

“I really enjoyed hearing from both Emily and Amelia! They both provided such a great insight to their healthcare experiences so thank you!” 

Naomi and Kylie presented to an online group of students studying Community Services at TAFE. Naomi shared her experience and tips on inclusive communication in improving the health outcomes for people with Down syndrome and why this is important.

“Thank you both so much for a fantastic presentation. Very engaging and informative. The students and teachers really got a lot out of it.” 

Caroline Van Riet, Ageing, Disability & Health Specialities Statewide | TasTAFE

Read the Health Direct article here.

Information Partner Newsletter Autumn 2022

We are so proud of the work our Health Ambassador Caitlin Woolley does and are thankful to Andrew Wilkie MP – Independent Member for Clark for sharing her speech in Parliament on the importance of inclusion.

“I want to be included and respected, not left out because of my disability.”

Rohan and Olivia presented and shared their experiences to the online forum about the importance of inclusive communication.

To view the webinar, click the link here.
Inclusive Communication – Improving Health Outcomes for people with Down syndrome – 29 March 2022

“Thanks so much Rohan and Olivia for sharing your experiences and wisdom. I hope that the health system can better meet the needs of people with Down syndrome through the fantastic advocacy that you are doing.”- Allied Health Practitioner

During March Alishia was featured by the NDIS in a story on the work she does at Northern Territory NDIS provider Carpentaria about two years ago and as a Health Ambassador for Down Syndrome Australia. You can read about Alishia’s story here:

Alishia helps spread the word about inclusive communication to health professionals

At Down Syndrome International’s 11th World Down Syndrome Day Conference at the United Nations in New York, a video featuring Rohan Fullwood and the other health ambassadors was featured showcasing the importance of inclusive communication and self-advocacy.

Inclusive Communication.

Gillian Gerke’s video on Inclusive Health – My diagnosis does not define me, was also featured.

Inclusive Health – My diagnosis does not define me.

Hugo and Natalie presented at the University of Adelaide to over 200 2nd Year nursing students on inclusive communication. This was Hugo’s first face-to-face presentation as a health ambassador and the feedback was sensational.

“Standing up and sharing information in front of lots of people is scary and daunting so well done to Hugo.” – 2nd Year nursing student

The nursing students obtained a better understanding of the skills of communication and the need for inclusive communication in health.

Gillian and Natalie delivered an online presentation on inclusive communication, to the Occupational Therapy students at the University of the Sunshine Coast. The students acquired more knowledge about Down syndrome and how inclusive communication can lead to people with Down syndrome achieving better health outcomes. When asked what they found most interesting they said:

“Learning about the human rights of people with an intellectual disability. It was very interesting and I would like to find out more so I can advocate for my future clients.” – occupational therapy student

Caitlin and Natalie presented at the University of Tasmania, Faculty of Nursing. Caitlin spoke of her experience in health and the benefits of inclusive communication in improving the health outcomes for people with Down syndrome.

The audience gained knowledge and skills from Caitlin’s experience.

“Recap on how persons with Down syndrome learn, strengths and how I could better adapt my communication techniques” – Registered Nurse

“Caitlin was amazing and really gave insight into lived experience” – Student Nurse

Health Ambassador Rohan presented at the Central and Eastern Sydney PHN GROW Project launch. Rohan shared his personal experience about navigating the healthcare system, and told everyone how important inclusive communication is for people with intellectual disability.

Project GROW is helping GPs and Allied Health practices become more accessible, and training GPs and Allied Health staff to better look after the health needs of people with intellectual disability.

Caitlin and Natalie presented at the Australasian Society for Intellectual Disability (ASID) conference and Olivia and Natalie presented at the WDSC to audiences spanning around the world. Both presentations were online and informed the audience about the Health Ambassador Program. The presentations were titled: Inclusive communication – Improving health outcomes for people with Down syndrome – A discussion on the research, the development and the delivery of the Health Ambassador program.

Olivia and Natalie presented at the 2022 World Down Syndrome Congress. The theme for this year’s congress was ‘Unlocking Hidden Potentials’, and they did a presentation on the importance of inclusive communication.

“…it was very informative, along the real life story and very interesting. I listen twice.”

The Health Ambassadors also made a presentation poster on the Inclusive Communication program for the Congress and shared their insights on how healthcare professionals can communicate better.

Hugo shared his experience of receiving the COVID-19 vaccination with the Disability Health Sector Consultation Committee.

Hugo told the committee that he got the vaccination because he wants to keep his family safe and to have a good life. He shared that he had a reaction after receiving his second shot, but received the right support from the healthcare system to recover and get better.

DSA Health Ambassador Alishia Lindsay presented to a group of Allied Health and Clinical Science students from Charles Darwin University in Darwin. The group felt that they all improved their knowledge about Down syndrome. The group thought that Alishia’s presentation on ‘Inclusive Communication’ was “very engaging”.

 “Allowed me to see a greater view on the perspectives of people with Down Syndrome. Also the importance of inclusive communication.”

DSA Health Ambassador Caitlin Woolley presented at the 39^th Speak Out Conference in Tasmania. Caitlin presented to an audience of people with disability and their supports, about the important work she and the other Health Ambassadors are doing.  

 “Very impressive thank you” – conference participant 

DSA Health Ambassadors Emily Porter and Amelia Sloan along with project manager, Natalie Graham, presented to second-year Deakin University Occupational Therapy students about Inclusive Communication. The Health Ambassadors spoke to the students over Zoom of their experiences within the health system. Over 71% of participants said that Emily and Amelia’s presentation changed their knowledge about communication styles. 

“I will make sure I take more time to get to know the person and make a point to adapt my communication style to meet the individual’s needs”.

DSA Health Ambassador Amelia Sloan and Natalie presented to Kyneton District Health Hospital & Community Care via Zoom.

Amelia’s core message is to ‘have patience, be calm and give me time to process what you are saying to me’. 

“You’re both amazing people!!! keep making a change to the communities” … “I think we all need to be aware of the different ways we can communicate to ensure understanding.” – the Kyneton staff

The Health Ambassador Program is included in the Roadmap. DSA Health Ambassador Caitlin Woolley and CEO of Down Syndrome Australia Ellen Skladzien spoke at the launch of the National Roadmap for Improving the Health of People with Intellectual Disability.

Caitlin spoke about the importance of being a Health Ambassador for DSA and also said “All people deserve the same healthcare and this roadmap gives everyone the vision and actions to make that happen so … thank you.” 

DSA Health Ambassador Gillian Gehrke and Early Years Officer at Down Syndrome Queensland Tanya McConnell, presented to Leaps and Bounds Disability Service, a multidisciplinary allied health provider.

They received enthusiastic feedback, including “Such a great presentation that started more in-depth discussions. Both Gillian and Tanya were so lovely and kind as well as very knowledgeable”.

DSA Health Ambassador Emily Porter and Health Program Manager Natalie Graham presented at The University of Melbourne MD Student Conference.

View 5 slides in just over 5 minutes to improve your knowledge and awareness of Down syndrome and how better to communicate with someone with Down syndrome.

You can find a recording of the Involving children and young people in health decision making webinar on YouTube here.

Health Ambassadors Emily and Amelia discuss the COVID-19 vaccines with infectious diseases specialist Professor Michael Richards.