INSPIRE Issue 33 - THE DISABILITY EDITION

Welcome to the Disability edition of INSPIRE

This issue of INSPIRE is dedicated to exploring the incredible innovation happening in health and medical research with respect to disability.

The need to drive inclusion and improve quality of life for people living with disabilities is more urgent than ever. At least 1 in 5 people in Australia live with disability, where 7.9% of all Australians have a profound or severe disability. Disability is part of the human experience, yet, people with disability are disproportionately impacted by poorer general health, higher rates of preventable diseases, lower life expectancy, and barriers to accessing health care when needed. There are even more poorer outcomes for particular groups in Australia, such as First Nations people with disability. The recent Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability highlighted the need for us to do better. We need to ensure our health and medical system and research priorities have a focus on the rights and equitable health outcomes for people with disability.

This publication brings together research that not only highlights the challenges faced by Australians with disabilities but also showcases innovative solutions designed to include, enable, and improve health outcomes. Each study within these pages contributes to a deeper understanding of how we can address attitudinal and systemic barriers in making our health system more inclusive and contribute to better health outcomes for people with disabilities. The examples show that in order to be more inclusive we need to listen to people with disabilities as researchers, as health and medical professionals, and as consumers.

From pioneering initiatives that enhance physical activity and wellbeing, such as the U-BEACH project, which transforms beach accessibility for people with disabilities, to tailored interventions like the palliative care model for people with intellectual disability developed by UNSW, this publication celebrates the strides being made across the country. These initiatives highlight the importance of inclusion and access, not just in physical spaces but in research, health care and community support as well.

Groundbreaking research into conditions like Cerebral Palsy, Angelman syndrome, and Tourette syndrome

further reflects the diversity of needs within the disability community. Read about the pioneering efforts by The Kids Research Institute to develop a more responsive quality of life measure for children with intellectual disabilities, or the critical work of UWA in enabling inclusive work environments for neurodiversity within the health workforce. Discover how Blue-Sky Community Service’s education program is equipping healthcare staff with the knowledge to work more inclusively.

What unites these varied projects is a common goal: to break down barriers and foster environments where people with disabilities can participate and thrive. The research contained in this Inspire underscores the importance of collaboration, innovation, rights, respect and compassion in creating a more inclusive Australia with improved health outcomes for all.

As the national peak body for Australian health and medical research, we are committed to affecting change in our sector to improve health outcomes for all Australians, including people with disability. This includes health and medical research and innovation that enables attitudinal, behavioural and systemic change. Through enhancing inclusion, accessibility, adapting and refining healthcare models, undertaking disability-led research and data, increasing the number of people with disability in our sector’s workforce as well as building a more disabilityaware and inclusive workforce overall, we can contribute to more equitable health outcomes.

It is our hope that these contributions inspire continued action and innovation. By working together, we can ensure that every person with a disability is not only included but have their rights realised and are empowered to lead a life of health, dignity, and fulfilment.

Best wishes

Nadia and your Research Australia Team

Australian Health & Medical Research & Innovation

24 Autism, ADHD, and Ageing: Welcome to the Unknown (Part 1) NATIONAL AGEING RESEARCH INSTITUTE

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30 Beyond the Kitchen Table

Unique study seeks to highlight the unmet needs of people with Tourette’s FOUNDATION FOR ANGELMAN SYNDROME THE KIDS RESEARCH INSTITUTE AUSTRALIA

Art Direction Matthew Ware p +61 403 844 763 e matt@objktive.com

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32 Research redefining possibilities for people with cerebral palsy CEREBRAL PALSEY ALLIANCE

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere

Australian Health & Medical Research & Innovation

ADVISORY SERVICES

Research Australia has provided specialist consulting and advisory services for many years. Our consultancy services continue to expand each year, driven by our unique expertise, reputation for high quality work, and strong relationships to drive outcomes and influence system change.

Most recently we have worked with state and federal governments, patient groups, industry, hospitals, and aged care. Some of the consulting services Research Australia provides are:

Market scanning – detailed analysis of who is undertaking what research to inform project planning and ensure projects target the right health and medical research stakeholders.

Policy advice – on the funding streams, government policy landscape and political interests that impact your projects’ success.

Sector consultation – facilitating engagement with the health and medical research community and the consumers who can best inform approaches to health and medical research.

Grants guidance – evaluating and reviewing grants opportunities and funding programs. m +61 2 9295 8546

k admin@researchaustralia.org

EVENTS OVERVIEW

THRIVING FUTURES: SUCCESS STRATEGIES FOR EMERGING HEALTH AND MEDICAL RESEARCHERS

Research Australia hosted a webinar on 23 July 2024, focused on improving the career trajectories of early and mid-career researchers (EMCRs). Dr George Taiaroa and Associate Professor Darshini Ayton presented findings from a comprehensive 2023 survey on the experiences and wellbeing of early and mid-career academics, which have been published in the report, The Landscape for Emerging Health and Medical Academic Leaders in Australia.

Following this, Professor Paul Glasziou AO, discussed the

NHMRC Good Institutional Practice Guide. The guide aims to improve institutional research quality and culture by providing necessary infrastructure and resources, streamlining processes, reducing bureaucratic burdens, and fostering a culture where good practices are expected, valued, and encouraged.

We also heard from Larry Marlow, CEO and Principal of Marlow Hampshire. Larry emphasised the importance of self-leadership and independence and identified key skills and knowledge areas essential for career development, including

UNIVERSITY ROUNDTABLE HEALTH DATA

On 14 August 2024, the Research Australia University Roundtable was hosted by the University of Western Australia at the Harry Perkins Institute. It was attended by 29 representatives from 21 universities. We were also joined by representatives from the Harry Perkins Institute, the WA National Imaging Facility (NIF) node, the Perron Institute, the WA Department of Health and the WA Department of Jobs, Science, Tourism and Innovation.

The Roundtable was preceded by additional events for those attending in person. Several small groups undertook a tour of the NIF Node. After a networking lunch, the formal proceedings commenced at 1.00 pm.

Developed with input from our host, the University of Western Australia, the program focused on health data as one of Western Australia’s strengths for decades, with two panel discussions on distinct but related topics. The first panel discussion topic was Leveraging Health Data for Research and drew on four panelists with expertise in curating, using and linking large datasets. The second panel discussion topic was on AI in Health Research and focused on the role and promise of AI in health research.

The panel discussions stimulated an energetic discussion with panel participants about the challenges and opportunities presented by making greater use of health data in research and of employing AI.

The next University roundtable is on 20 November 2024 and will be hosted online.

funding skills, collaboration, and communication. He also advocated for breaking down silos between academia and industry to enhance career mobility and opportunities for researchers.

Key challenges discussed included job insecurity and the need for better coordination in grant processes. Discussions also covered authorship dynamics and data-sharing practices that can influence academic careers, underscoring the need to support EMCRs in navigating both academic and non-academic pathways.

Prof. Paul Parizel, UWA, James Yuen, Department of Jobs, Tourism, Science and Innovation, Steve Arnott, Perron Institute, Prof. Romola Bucks, UWA

Roundtable participants on a tour of the National Imaging Facility

FUTURE HEALTH LEADERS

Following our WA trip, on 21 August 2024 Research Australia and Abbvie hosted 12 year 11 students from across Australia at Australian National University (ANU) in Canberra for our Future Health Leaders program. The purpose of the program is to inspire female high school students to enter a career in health and medical research, innovation and life sciences where women are often underrepresented.

The program included hearing from inspiring female leaders in health, research and communications, activities at the ANU campus, and culminated with a reception at Parliament House, where students heard from Assistant Minister for Health and Aged Care and Indigenous Health, the Hon Ged Kearney MP, Assistant Minister for Mental Health and Suicide Prevention, and Rural and Regional Health,the Hon Emma McBride MP, as well as Dr Monique Ryan MP, Co-Chair of Parliamentary Friends of Health and Medical Research. Several students also had the opportunity to meet their local MP.

Research Australia Chief Executive Officer, Nadia Levin observed that these young women are already impressively carving out their own pathways in health and medical research, innovation and life sciences.

All have taken initiative in experiencing real world opportunities, in rural and remote communities, obstetrics, medical technology and genetics and it is inspiring to see the next generation of health and medical researchers and leaders.

It was tremendous to partner with Research Australia member, AbbVie Australia, who are an exemplar of women in leadership roles. The students will now be invited to attend a series of virtual sessions with other mentors and experts to equip them with further skills and insights to pursue their chosen career pathways across the life sciences.

NAVIGATING AUSTRALIA’S MEDICAL RESEARCH LANDSCAPE

On 5 September 2024, Research Australia hosted an insightful conversation between Nadia Levin and Dr. Alan Paul, Executive Country Medical Director of GlaxoSmithKline Australia, to delve into the evolving medical research landscape and the critical role of industry collaboration. Their discussion shed light on a range of challenges and opportunities, including the need to bridge the gap between industry and academia, the

lengthy process of translating research discoveries into new therapies, and the growing concern of antimicrobial resistance. They also emphasised the importance of leveraging modern manufacturing, accelerating clinical trial processes, building sustainable career pathways for researchers, and fostering genuine partnerships to drive long-term investment and innovation in the medical research sector.

The Hon Emma McBride MP, The Hon Ged Kearney MP and Dr Monique Ryan MP, speaking with students at Parliament House

Students touring one of the laboratories at the John Curtin School of Medical Research, ANU

The day culminated with a reception at Parliament House.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

Research participant at a self advocacy organisation engaged in arts-based method of body mapping

GENETICS IS AN AMAZING THING

People with intellectual disability experience premature mortality and are over-represented in avoidable deaths.

Genetic healthcare has the potential to improve health outcomes but people with intellectual disability are often excluded from decisionmaking and accessible genetic counselling. The GeneEQUAL program is co-designing inclusive, respectful and person-centred genetic healthcare together with people with intellectual disability.

Genomics has revolutionised our understanding of the causes of health conditions and disabilities. However, in preliminary exploratory research, we found that people with intellectual disability often miss out, due to noninclusive and inequitable healthcare. Interviews and focus groups with people with intellectual disability show how they commonly have genetic tests done on them rather than with them. They were rarely offered reasonable adjustments to help them make informed choices, despite this being a requirement in healthcare policy

Receiving test results was often bewildering, or even traumatising: Aaron told us “I was sitting there, dumbfounded”, while Katrina said, “I feel like I’m not normal now. I’ve told people about it, and they’re my friends and family and they don’t mean to pick on me... but they look like, ‘You’re just a retard. You’re not all there now”. Three participants had considered suicide after their genetic diagnosis. People were rarely linked to peer-support, professional counselling or mental health services.

These findings reflect a concerning pattern across healthcare. They echo findings from the recent Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability highlighting how exclusion, neglect and abuse characterises the healthcare experiences of people with intellectual disability. The Australian Government’s National Roadmap for Improving the Health of People with Intellectual disability calls for radical change. GeneEQUAL believes that such change can only occur when health research is co-designed and conducted with people with intellectual disability and focuses on issues that matter to them.

GeneEQUAL is an inclusive research program conducted by a multi-disciplinary team of researchers and coresearchers with intellectual disability who work together on projects in health and education. Funded by the National Health and Medical Research Council, the program aims to address the needs of people with intellectual disability by enabling the development and delivery of a world-first respectful, accessible, and

inclusive model of genomic healthcare. All stages of the project reflect an inclusive approach where people with intellectual disability are involved as collaborative partners with their lived experience shaping the research. We are guided by an advisory board of stakeholders from selfadvocacy groups, government, healthcare, and research.

EXPLORING BARRIERS AND ENABLERS TO HEALTHCARE CONSENT

Our systematic review of twenty-three studies found that even when people with intellectual disability received health information it was inaccessible, preventing them making informed decisions. Moreover, health professionals did not have enough training in informed consent and reasonable adjustments and faced resource constraints and a lack of support in the health system. By contrast, informed consent was enabled by the adoption of a person-centred approach and effective communication using simple language and non-verbal methods between health professionals and people with intellectual disability. Our recommendations included providing clinician training in informed consent, and the co-production of accessible information resources.

LISTENING TO VOICES OF THOSE AT THE CENTRE

Currently GeneEQUAL is conducting in-depth qualitative research with people with intellectual disability, their families, support people and health professionals to inform a comprehensive understanding of the genetic healthcare landscape. We use interviews, focus groups, and arts-based methods such as body mapping to ensure participants can voice their perspectives as they wish. In body mapping (Figure 1) participants fill in an outline of themselves with pictures and words representing their experiences; this is particularly helpful for discussion of sensitive topics.

Ethics approval has been received from the Australian Institute of Aboriginal and Torres Strait Islander Studies for culturally safe engagement with Aboriginal and Torres Strait Islander communities and participants. We aim to explore the experiences of Aboriginal and Torres Strait Islander people in yarning circles, coordinated by GeneEQUAL’s lead indigenous research Greg Pratt.

ESTABLISHING GUIDING PRINCIPLES

A Guiding Principles Development group has been established to draft Guiding Principles that help overcome modifiable barriers and enhance enablers of a respectful, accessible and inclusive model of genomic healthcare.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

Members of GeneEQUAL team with research participant at a self advocacy organisation

This group includes representation from self-advocacy groups, support organisations, genetic health, Aboriginal and Torres Strait Islander health, and ethics.

CREATING SUITE OF ACCESSIBLE RESOURCES

The project aims to create and disseminate a suite of co-designed resources to support the implementation of more inclusive, respectful and person-centred healthcare. Recommended resources so far include social stories, models and videos to explain genetic health literacy concepts, shared decision-making tools, templates to help translate a genetic diagnosis into appropriate healthcare, checks and clinician education on reasonable adjustments and communication, involving people with intellectual disability as co-educators. The dissemination of these resources will facilitate implementation of the Guiding Principles and equity of access to best practice in genomic healthcare.

The GeneEQUAL team (Figure 2) believes inclusive and accessible healthcare for all is core business, not just an optional extra. If you are keen to find out more, be involved in interviews or focus groups, or share our research opportunities with your networks, please check out our website www.GeneEQUAL.com or email us on geneequal@unsw.edu.au

Authors: Dr Michelle Tso is program manager for GeneEQUAL at UNSW Sydney, Professor Iva Strnadová is based at the School of Education, UNSW Sydney, and leads the research agenda at the Disability Innovation Institute at UNSW Sydney, Julie Loblinzk OAM is a Research Fellow and Skie Sarfaraz, and Sam Hurd are co-researchers at UNSW Sydney, Dr Joanne Danker is a lecturer at the School of Education, UNSW Sydney, Professor Jackie Leach Scully is Director of the Disability Innovation Institute at UNSW Sydney, Bronwyn Terrill is a science communicator, educator, researcher and writer at the Garvan Institute of Medical Research, Jackie Boyle is a genetic counsellor at the NSW Health Genetics of Learning Disability Service, Greg Pratt is Principal Research Fellow at Central Queensland University and Dr Elizabeth Emma Palmer, is a Clinical Geneticist at Sydney Children’s Hospitals Network Randwick and Senior Clinical Lecturer at UNSW Sydney. The authors are all members of the GeneEQUAL research program. The GeneEQUAL team works on many projects spanning the areas of health and education to make genetic and all health care inclusive, person-centered and respectful of people with intellectual disability. The team includes people with intellectual and other disabilities, researchers, health care workers and educators.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

INCLUSIVITY IS A MUST!

Recognising the urgent need for inclusive healthcare, Blue Sky Community Service’s pilot education program equips health service staff with essential knowledge and tools to work effectively with people with disability.

Co-designed resources and training, developed collaboratively with people with lived experience of disability, aim to improve health outcomes and foster a more inclusive healthcare culture.

For the 5.5 million people living with disability in Australia, navigating the healthcare system can present challenges that restrict access to care and limit participation in healthrelated decisions, consequently contributing to high rates of unmet healthcare needs and poor health outcomes.

Healthcare services that are truly accessible and inclusive require that staff are empowered with necessary knowledge, understanding and confidence to work effectively with people with disability and their families.

BUILDING AN INCLUSIVE CULTURE

The Blue Sky education program had clear and ambitious goals. These goals were to enhance the skills of healthcare staff, improve accessibility to services, foster a more inclusive organisational culture, and develop systems for effective communication between healthcare staff, local disability services and people accessing services in the Mid North Coast Local Health District (MNCLHD). At its core, the program aimed to improve the health experiences and outcomes for people living with disability and their families.

During the consultation phase of the program, people with disability and their families shared a common proclivity for more inclusive, attentive, and respectful healthcare practices. As one MNCLHD service user explained “Disability is so varied and can be invisible, so that’s where we need more work ... a bit more training [of healthcare staff].”

Pre-program feedback revealed that healthcare staff recognised the need for improved accessibility and inclusivity in health services. Staff were motivated to develop their knowledge and skills to better support people with lived experience of disability, demonstrating a strong commitment to enhancing their practices and fostering a more inclusive healthcare environment.

CO-DESIGNING CHANGE

Responding to these needs, Blue Sky convened a consultation group of local people with disability and

their families to co-design a range of resources to be used throughout the MNCLHD. Some resources were specifically designed for health service staff education, while other resources were communication tools to bridge the gap between staff and people with disability. A critical aspect of the education program and associated resources was the intentional integration of lived and living experiences into all the materials.

One particularly innovative resource was the Ask Away video series, through which people with disability candidly shared their life experiences and answered questions about their daily realities. This video series was a key component of staff training, enhancing awareness and empathy among healthcare staff.

Blue Sky also introduced the My Health Journey Passport as a communication tool designed to empower people with disability to better express their needs and preferences when accessing mainstream healthcare services. “You can get a passport, put all your information in, and most people are able to do that themselves and they quite enjoy doing it because it’s sort of like a ‘who am I?’ and ‘what’s important to me?’” explained one health service user. “And then the staff will recognise, ‘Oh, OK, you have a disability,’ and that little tool has made such a big difference.”

IMPACTFUL OUTCOMES

An independent evaluation of the program highlighted its significant positive impact. Healthcare staff reported improved knowledge, understanding and confidence to work in a person-centred, strengths-based manner. “Some really simple changes in our everyday practice can make the health journey for someone with a disability so much better” one staff member noted.

Through participation in the program, staff developed a deeper appreciation of prioritising the perspectives of people with disability and their families. Hearing directly

from those with lived experience during education sessions provided staff with a more nuanced understanding of disability, and practical strategies to effectively support people. One staff member commented “It [the program] helped staff to look beyond medical issues and to consider the bigger picture and address things comprehensively.”

EMPOWERING VOICES FOR CHANGE

For those with lived experience of disability, participating in the program was empowering and a source of pride “It was quite a privilege to be involved,” one person shared. Another reflected, “I’ve learned an awful lot about how to live life in a different way, and I thought it was important to share that to promote acceptance [and] inclusion.” Participants also praised the program team for genuinely valuing their contributions. “[I] love working with Blue Sky —it always feels like they really see us, that they understand,” one person noted, commending the team’s commitment to fostering a genuinely inclusive and empathetic program design.

A BLUEPRINT FOR CULTURAL SHIFT

This program offers a blueprint for promoting meaningful cultural change in healthcare settings. The outcomes achieved over the four-year period emphasise the crucial role lived experience can play in overcoming entrenched barriers to accessibility and inclusivity. The importance of sustaining these efforts was emphasised throughout the evaluation, as one family member remarked “This definitely needs to continue”. The inclusion of lived experience in healthcare education is not just beneficial—it is essential for creating a truly accessible and inclusive healthcare system for all Australians.

Authors: Dr Tracey Parnell, PhD, MOT, BAppSc(OT), GCertLTHE, SFHEA, has a careerlong commitment to rural/regional health having lived and worked in regional NSW since graduating in 1991. With clinical experience in the adult rehabilitation, she commenced her transition into academia over twenty years ago. Tracey’s research has focused on exploring lived experience, understanding the value of occupational participation to health and wellbeing, and enhancing health equity. Tana Cuming, BHlthSc, GCertLTHE, GCertAdolHlthWellbeing, is a Lecturer in Health and Rehabilitation at Charles Sturt University, with over ten years of experience in academic and research roles. Her work focuses on advancing the rural allied health workforce through contributions to national, state, and local public health initiatives

Strategies to promote inclusivity at Mid North Coast Local Health District (Image courtesy of Blue Sky Community Services)

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

QUANTIFYING QUALITY OF LIFE FOR KIDS WITH INTELLECTUAL DISABILITY

A unique tool developed by researchers from The Kids Research Institute Australia is being used to measure quality of life for children and young people with intellectual disability.

Professor Jenny Downs, Head of Child Disability research at The Kids, and her team developed the Quality of Life Inventory-Disability, or QIDisability, after parents of children with conditions including Down syndrome, Rett syndrome, cerebral palsy and autism expressed frustration at the inadequacy of existing tools to capture health and wellbeing in children with more severe disability.

“The measures that were already in place were more suited to mild disability. This meant kids with more severe disability were being ignored, which I didn’t think was fair,”

Professor Downs said.

“There are many setbacks for these kids – health issues and other challenges – so there’s a critical need to be able

to understand and monitor all children with disability.

“No one should be forgotten – every child’s quality of life should be recognised, and I didn’t want one voice to be lost.”

QI-Disability, developed specifically for children and adolescents (aged 5-18) with intellectual disability, measures quality of life across multiple domains, including physical and mental health, social interaction, independence, leisure and the outdoors, and positive and negative emotions.

“Excitingly, the tool can be used to monitor the impact of therapies, including new medicines, and to help evaluate and provide an evidence base around the real-life value

Samuel Hevron, now 14, underwent a gastrostomy to counter persistent feeding problems due to a complex mix of health issues. He and his family shared their experiences with researchers to develop Nourish, a free resource for families and health professionals.

Perth Mum Natalie Hevron (L) and son Samuel –whose experiences with the surgical procedure gastrostomy helped researchers design the free resource Nourish for families and health professionals – with Professor Jenny Downs.

of different types of interventions,” Professor Downs said.

Since its launch in 2019 QI-Disability has been used in trials in Australia and overseas to screen, assess and monitor participants, to evaluate community-based interventions – including arts programs – and to help multi-disciplinary teams identify where day-to-day support is needed.

In one of its earliest local applications, Professor Downs used QI-Disability to help understand the broader impact of the surgical procedure gastrostomy – a feeding tube placed into the stomach – on children with intellectual disability, as well as their families.

While the team’s review of linked health data showed a significant drop in hospitalisations among those who had had the procedure, the review revealed nothing about gastrostomy’s effect on overall quality of life. The team then used QI-Disability to guide and analyse telephone interviews with parents to explore the wider impacts.

“While some negative experiences were reported, what came through very clearly was that having the procedure supported both the children and their families in a positive way,” Professor Downs said.

“The biggest effect on the child’s quality of life related to their physical wellbeing, but many children were also more settled – they had more stable moods and were more alert.”

Having a feeding peg also gave children and their families more opportunities to participate in the wider community, allowing greater scope for social interactions. Parents reported their family benefited from easier daily routines, shorter and less stressful feeding times, and improved family interactions.

“Knowing this kind of information is so important if we are to provide good support to families,” Professor Downs said.

The team – in close collaboration with families, Developmental Disability WA (DDWA) and Perth Children’s Hospital clinicians and gastrostomy nurses – then used the findings to develop a first-of-its-kind online resource called Nourish to provide information tailored to families and caregivers.

Launched in 2022, Nourish is a free resource that includes exercises and videos featuring parents discussing why they chose gastrostomy, the life-changing difference it has made, and tips and tricks they’ve learned. It has been downloaded more than 4,100 times and shared with families and healthcare professionals.

QI-Disability has also seen strong demand, with the team so far receiving more than 160 requests from 25 countries across six continents to use it for international clinical

trials, research and for healthcare professionals in hospital and community settings. The tool has been translated into multiple languages, including Hebrew, French, German, Danish, Spanish, Dutch, Hungarian, Turkish, Czech and Mandarin.

In related work, Professor Downs and team are contributing their expertise to the global Inchstone Project – a consortium of patient advocacy groups and researchers focused on accelerating the development of outcome measures for people with severe developmental and epileptic encephalopathy disorders.

The project’s title reflects the need, in children with more severe disability, to tune in to the ‘inchstones’ rather than ‘milestones’ as these children develop or respond to therapies and interventions, including new medicines being trialled.

“It’s so important, not just for trials but for the daily lives of these children, that we have measures that can better reflect how they are progressing,” Professor Downs said. “Families do not want medicines thrown out because we have not understood the effects on their children.

“Likewise, if a measure of more finely graded skills indicates that skills have been lost, then we can be clear that we definitely do not want that new medicine.”

Author: Professor Jenny Downs is Head of Child Disability at The Kids Research Institute Australia (formerly Telethon Kids Institute), an Adjunct Professor at The University of Western Australia, and a lecturer at the Curtin School of Allied Health. She also heads the paediatric node of the National Centre of Excellence in Intellectual Disability Health, based at UNSW Sydney.

Photo credit: The Kids Research Institute Australia

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

ENHANCING HEALTH AND WELLBEING

THROUGH BEACH ACCESSIBILITY WAVES OF INNOVATION:

The U-BEACH project is implementing an evidencebased model of beach accessibility to improve the health and wellbeing of people with disability.

With 18% of Australia’s population currently living with disability, their exclusion from full participation in society is considered a human rights and public health issue.

The health of people with disability is worse than that of their peers without disability across a range of health outcomes including mental health, chronic illness, and life expectancy. Research suggests that natural environments can be ‘equigenic’, whereby health benefits linked with their access are most significant for disadvantaged groups. This raised the question: how can beach accessibility be improved to enhance the health and wellbeing of people with disability and help reduce health inequalities? This question led to the conception of the Universal Beach Accessibility Hub (‘U-BEACH’) – a project led by CQUniversity PhD candidate, Sasha Job.

CHARTING NEW WATERS: SOCIALITY INNOVATIVE DISABILITY RESEARCH

The beach is central to Australian lifestyle and culture. It offers a dynamic setting for land and water activities associated with improved physiological, psychological, and social health and wellbeing. Unfortunately, access to beach environments is limited for people with disability, excluding them from these benefits.

The U-BEACH project aims to develop and evaluate an evidence-based collaborative and communitydriven model of beach accessibility. U-BEACH unites stakeholders such as health professionals, researchers, people with disability, disability advocates and service

providers, government, and surf lifesaving to exchange knowledge, share resources, and form partnerships to develop innovative solutions that address the social challenges of disability and accessibility. The ultimate aim is to improve the health and wellbeing of people with disability by getting them onto the beach and into the ocean.

Phase one of the U-BEACH project established the BlueABILITY model for recognising the complex interconnections between blue space, accessibility, physical activity, and health and wellbeing for people with disability. This model is the foundation of phase two, which explores the benefits, barriers and facilitators of beach access from the perspectives of people with disability, carers, health professionals and surf lifesaving personnel. Phase three of the project will use the BlueABILITY model to ensure barriers and facilitators of beach access are addressed to provide societal (e.g., beach accessibility training), local (e.g., specialised beach equipment), and personal interventions (e.g., adapted beach activities) aimed at supporting people with disability to participate in health-promoting beach-based activities.

CURRENTS OF PROGRESS: UNDERSTANDING AND OVERCOMING THE CHALLENGE OF BEACH ACCESSIBILITY

Research conducted by the U-BEACH research team indicates that two-thirds (68%) of people with disability in Australia are unable to visit the beach as often as they want, with nearly half (45%) unable to visit at all. Key barriers include difficulty moving on soft sand, a lack of specialised equipment, and inaccessible leadup pathways.

The research found that barriers to beach access not only exclude people with disability from enjoying the beach, but also hinder healthcare interventions. Unpublished data reveals that physiotherapists and occupational therapists recognise the health value of the beach and widely accept it as an important healthcare setting. However, actual use of the beach for healthcare interventions for people with

disability is limited, primarily due to inadequate beach accessibility.

To address this, the U-BEACH research team is collaborating with Surf Lifesaving Australia to improve beach accessibility. Preliminary data suggests that key barriers to surf lifesaving organisations supporting accessible beach initiatives include limited awareness of accessible beach information and insufficient training to support the use of specialised equipment.

Overcoming identified barriers to beach access may increase time spent at the beach participating in health-promoting activities (e.g., walking, swimming) and therefore improve health outcomes for people with disability. Additionally, health professionals would use the beach for healthcare interventions designed to improve the physical, mental and social health of people with disability. Measures to improve beach accessibility should initially be employed at patrolled beaches given their widespread distribution throughout Australia, proximity due to coastal population density, and practical considerations such as storage and leveraging of existing accessible infrastructure. This recommendation is largely supported by surf lifesavers throughout Australia, with the majority willing to support accessible beach initiatives including a ‘flags out mat out’ approach. Training to support such initiatives will be key.

RIPPLES OF IMPACT: IMPROVING HEALTH AND WELLBEING THROUGH PARTICIPATION IN BEACH-BASED ACTIVITIES

Knowledge generated through the U-BEACH project is being leveraged to implement initiatives like community

Jasmine enjoyed the ocean with her family and carers at a recent U-BEACH Community Beach Day in Bargara, Queensland, thanks to specialised equipment and support.

beach days, adapted beach-based community programs, healthcare interventions, and training packages aimed at providing equitable beach access and supporting people with disability to participate in health-promoting beach activities. For example, in Bargara, Queensland, the BlueABILITY model, in combination with U-BEACH barriers and facilitators research, is being used to implement

Beach days are supported by community partners and philanthropic grants, offering innovative and evidencebased beach accessibility solutions that include physical equipment (e.g., beach pathways, specialised mobility equipment) and services to support beach access (e.g., physical support, adapted activities).

U-BEACH Community Beach Days have been highly successful, winning two national awards in 2023 including Best Community Program for People with Disability at the Australian Disability Service Awards and Community Champion in the Universities Australia - Shaping Australia Awards. This success is driving expansion of the program into more Queensland locations, including Palm Cove, Agnes Water, Mackay, Emu Park, Yeppoon, Hervey Bay, Kewarra, and Tannum Sands.

Ensuring long-term success and viability of these beach days as well as improvements in beach accessibility throughout Australia requires training and education for beach accessibility that includes the safe and effective use of specialised equipment. A U-BEACH micro-credential for beach accessibility has therefore been developed and will be launched in late 2024.

Author: Sasha Job is a Physiotherapist and PhD Candidate at CQUniversity. She has a special interest in physical activity and accessibility, which has inspired her PhD “Universal Beach Accessibility Hub (U-BEACH): A pathway to increase physical activity participation, health, and wellbeing in people with disability”. Sasha is the U-BEACH project owner, manager, and principal research investigator. Dr Steven Obst is a physiotherapist and senior lecturer in musculoskeletal physiotherapy at CQUniversity. He is Sasha’s principal PhD supervisor and a U-BEACH project executive and principal research investigator. Dr Luke Heales is a physiotherapist and senior lecturer in musculoskeletal physiotherapy at CQUniversity. He is Sasha’s associate PhD supervisor and a U-BEACH project principal research investigator.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

BREAKING BARRIERS:

A TAILORED PALLIATIVE CARE MODEL FOR PEOPLE WITH INTELLECTUAL DISABILITY

Tailored model of palliative care for people with intellectual disability

UNSW Sydney launches a new model of care and supporting toolkits to improve palliative care for people with intellectual disability in Australia.

THE NEED FOR TAILORED CARE

People with intellectual disability are an ageing population who are experiencing increasing rates of lifelimiting conditions such as respiratory conditions and cancer. Palliative care is interdisciplinary and personcentred care that aims to optimise the quality of life of people experiencing such conditions. Despite their increasing need for palliative care services, people with intellectual disability face multiple barriers to accessing quality palliative care that meets their needs. These include barriers related to education, communication, collaboration and delivery of health and social services.1 Further, there is limited guidance for health professionals on how to meet the palliative care needs of people with intellectual disability in Australia.

THE RESEARCH

A collaboration of researchers led by UNSW Sydney completed a mixed-methods research examining access to, and the impact of palliative care for people with intellectual disability. The project team included experts in intellectual disability healthcare, palliative care, and health service design and innovation.

The project involved: i) a policy review to determine how the needs of people with intellectual disability are represented within Australian palliative care-related legislation, policy, guidelines, strategies and frameworks; ii) a systematic review of models of palliative care for people with intellectual disability; iii) a linked data study of palliative care service use by people with intellectual disability in New South Wales; iv) consultations with people with intellectual disability, supporters of people with intellectual disability, and health professionals providing palliative care about what makes good palliative care for people with intellectual disability and how palliative care services could operate to best meet their needs; v) an international Delphi study to reach consensus on the guiding principles, implementation strategies and operational requirements of a tailored model of palliative care for people with intellectual disability in Australia; and vi) a pilot study of resources to support implementation of the tailored model of care. The findings from these activities were translated into the co-design of a tailored model of care and supporting toolkits and resources. These resources aim to improve the quality of palliative care service delivery to people with intellectual disability in Australia.

DEVELOPMENT OF A TAILORED MODEL OF PALLIATIVE CARE AND TOOLKITS

The project resulted in the creation of a tailored model of palliative care for people with intellectual disability, which provides a framework for the delivery of quality palliative care in Australia. The model has been designed so that it can be applied within different services and settings to support an inclusive approach to care delivery.

The model has two key components:

i) building the capacity and capabilities of all existing health services that provide palliative care for the general population (e.g., primary care, community- and hospitalbased support) to meet the needs of people with intellectual disability, and ii) the development of highly specialised palliative care services for this population group.

To support the implementation of this model, the project team produced toolkits for health professionals, people with intellectual disability and supporters of people with intellectual disability (including family, friends and paid/ unpaid carers). These toolkits provide guidance and practical resources to facilitate the integration of the model into practice, including clinical and organisational strategies for health professionals to provide tailored care, and information for people with intellectual disability and their supporters.

CONCLUSION

The new tailored model of care and supporting toolkits represent a significant step forward in driving positive change in palliative care for people with intellectual disability. By providing a framework and practical resources, this project offers valuable guidance for improving clinical practice, service design, and policy in this area.

Authors: Dr Rachael Cvejic, Senior Research Fellow, National Centre of Excellence in Intellectual Disability Health, UNSW Sydney. Olivia Burton, Program Manager, National Centre of Excellence in Intellectual Disability Health, UNSW Sydney. Dr Janelle Weise, Senior Research Fellow, National Centre of Excellence in Intellectual Disability Health, UNSW Sydney. Professor Julian Trollor, Director, National Centre of Excellence in Intellectual Disability Mental Health, UNSW Sydney

New tailored model of palliative care for people with intellectual disability and supporting Toolkits.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

THE RIGHT TO SUPPORT FOR DECISIONMAKING IN AGED CARE? EXPLORING

LAW AND PRACTICE

Up to 80 per cent of older Australians living in residential aged care have some form of dementia or cognitive difficulty, which may affect their communication and understanding – the two key parts of legally recognised decision-making.

With the move to rights-based regulation of aged care, we need to better understand the support that is already available for decision-making in these settings and identify issues for the future.

Dr Michelle King from The University of Queensland’s School of Health and Rehabilitation Sciences is leading research exploring decision-making and capacity in law and in practice for people using aged care in Australia. This is a key part of Associate Professor Sarah Wallace’s $2 million grant from the Medical Research Future Fund (MRFF) Dementia, Ageing, and Aged Care Mission. Dr Wallace and her team at The University of Queensland’s Queensland Aphasia Research Centre, are working to co-design, implement, and evaluate an interdisciplinary, multi-component intervention to support Better Conversations in Aged Care

DISABILITY, AGED CARE, AND HUMAN RIGHTS

Diseases and conditions of ageing are not usually included in how we think about disability. When someone’s everyday functioning is affected by dementia, for example, we may not think of this as a disability issue: we think of it as an ageing issue. This can affect the support and services available for people with all kinds of diseases and disabilities of ageing.

Importantly, many of the human rights drivers in the disability sector, including foundational human rights protections for people with disabilities, the right to decision-making support, and choice and control over support funding and services, have been slower to take hold in the aged care sector.

In Australia, the Royal Commission into Aged Care Quality and Safety has been one step towards changing that focus, and the new Aged Care Act will be rights-based and person-centred. Our understanding of age, and disabilities and impairments related to ageing, is slowly shifting to include human rights and autonomy.

DECISION-MAKING: UNDERSTANDING AND COMMUNICATION

One of the main elements of rights-based aged care is support for decision-making. This is an integral part of enabling people’s choice and control over services and funding, feedback and complaints about service quality, and practices which underlay aged care regulation.

We don’t know enough about how decision-making, feedback and complaints, and self-advocacy works in the aged care sector now, and we know even less about how further shifts towards a right-based system will work in practice.

People using aged care services are more likely to have impairments to their communication and understanding, the two core elements of legally recognised decisionmaking. A person needs to understand the elements and consequences of a decision and be able to communicate that decision to others. If a person is not able to communicate their choices, preferences, and concerns with supports and services, they are far less able to advocate for themselves, exercise choice and control, or ensure their human rights are respected and protected.

SUPPORTED DECISION-MAKING

If someone has impairments to their understanding and communication when making decisions, they must be supported to make decisions. Supported decision-making can involve assisting a person to understand a decision and its consequences or helping someone implement or communicate a decision to others.

In Australia, most of our state and territory jurisdictions now provide for supported decision-making and require substitute decision-makers – such as people acting as Power of Attorney, or appointed guardians, advocates, or trustees – to use supported decision-making principles. However, the idea of supported decision-making is quite new to the aged care sector. In practice, decision-making in residential aged care settings is often substituted in ways that don’t include the person themselves, and support for decision-making is less likely to be an option.

RIGHTS-BASED AGED AND DISABILITY CARE IN PRACTICE

Communication is a vital part of decision-making. We know that in aged care services, communication

support needs are often overlooked, and few services and supports are provided to older people for improving and supporting communication. This has an impact on decision-making, from big decisions about health care or where a person wants to live, to providing feedback about care quality and service practices.

Care will deliver a multi-component intervention to identify communication support needs for older Australians using aged care services, co-design staff training in effective communication support, and generate guidelines to support communication, decision-making, and feedback and complaints in aged care.

Dr King leads the project workstream aimed at understanding how decision-making works now in aged care, how communication affects decision-making, and how supported decision-making might work now and in the future. This research is co-designing current and clear guidelines for communication, decision making, and feedback and complaints for people using aged care services which are accessible and fit-for-purpose for the Australian context.

Current research includes a roundtable in September with key stakeholders and advocates on future actions for people using aged care services who have publicly appointed decision-makers like Public Guardians, Public Advocates, or Public Trustees. It will also review the law regulating decision-making in aged care and will be recruiting soon for our first round of co-design of supported decision-making priorities.

This research will mean additional support for older Australians to know their rights to support for decisionmaking about health care, support services, and providing feedback and complaints about their aged care: empowering people using aged care to decide and be supported to decide. This work extends disability rights and supported decision-making into aged care to expand human rights for older Australians.

Author: Dr Michelle King. Michelle is a sociologist and lawyer. Her work focuses on decision-making, legal capacity, and how law works in practice for people with disabilities and other impairments to legally recognised decisionmaking. She explores decision-making in practice in a range of areas, including health and aged care, the NDIS, banking and finance, income support, and voting. She is a Research Fellow in the Queensland Aphasia Research Centre at the University of Queensland and the Surgical, Treatment and Rehabilitation Services (STARS)

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

AUTISM, ADHD, AND AGEING: WELCOME TO THE UNKNOWN

(PART 1)

It’s been over 40 years since autism and Attention Deficit Hyperactivity Disorder (ADHD) were first included in the Diagnostic and Statistical Manual of Mental Disorders.

However, only more recently has it been recognised that these neurodevelopmental conditions are lifelong. But what is really known about autism and ADHD in older adults and is Australia ready to support this population?

ADHD IN OLDER ADULTS: UNCOVERING THE HIDDEN STRUGGLES

In 2022, the Australasian ADHD Professionals Association released the Australian Evidence-Based Clinical Practice Guideline for ADHD, Australia’s first NHMRC-approved clinical practice guideline for ADHD. Although the guideline refers to identification, assessment, and treatment across all age groups, it acknowledges that little is known about the existence, presentation and outcomes of ADHD as we age.

Professor Mark Bellgrove, the Melbourne-based cognitive neuroscientist responsible for leading the development of the guideline, confirms a distinct lack of evidence regarding ADHD and older adults.

“We have very little data regarding the precise prevalence of ADHD in older adults. This is a big issue in Australia because there’s a dawning recognition that ADHD is not just in kids - it’s a lifelong presentation.”

While ADHD symptoms typically present before the age of 12 years, including difficulties with impulsivity, attention and/or hyperactivity that interfere with daily life, it is often not considered in differential diagnosis until later when demands for independence increase. The ADHD Foundation suggests there are over one million people with

ADHD in Australia, most of whom are undiagnosed adults with no access to treatment. This may be compounded by varying manifestations of ADHD across the lifespan and possible impacts of co-morbidities. Professor Bellgrove highlights menopause as a particular life stage of interest and concern.

“There are well-known interactions between dopamine (generally low in ADHD) and oestrogen (which decreases during menopause). But in what ways menopause makes ADHD medications less effective, or exacerbates symptoms, in older women is not known. It’s an area where we’re hopelessly underdone in terms of our research knowledge.”

AUTISM IN OLDER ADULTS: IDENTIFIED YET IGNORED

The situation is similar for autism. While the Guideline for the Assessment and Diagnosis of Autism in Australia, updated in 2023, contains “sufficient flexibility to apply to the assessment of a child, adolescent or adult of any age, gender, cultural or language background, communication or intellectual capacity...”, the reality is that autism in adults remains under-recognised and poorly understood. Autistic adults face numerous barriers to diagnosis in Australia, including scarcity of clinicians trained in identifying the condition and substantial costs associated with formal assessment. For example, it was only last year that the maximum age for Medicare-rebatable diagnostic services was raised from 13 years and, even now, those over the age of 24 are ineligible. This is further complicated by the diversity of social, communication and behavioural differences that present in individuals with autism and the potential for these to fluctuate over time as well as across contexts (e.g. high vs. low social demands) and environments (e.g. sensory safe vs. challenging).

However Professor Sandra Thom-Jones, an autistic author, academic, and advocate, is unwavering when it comes to the question of autism and ageing.

“We do not grow out of autism. There is no issue identifying what proportion of people who are autistic children will be autistic as adults. That’s easy. The answer is 100%.”

Reflecting on her personal experience, Professor ThomJones describes autistic adults as an “ignored population” in regards to recognition, research and resourcing.

“We know that the health care system is a huge issue for autistic people. When I have a medical symptom, I find it difficult to understand how I’m feeling and then to be able to explain that to a doctor. Then the doctor asks me questions in a way that’s not how I communicate as an autistic person. We don’t understand the question. We give the wrong answer. And so we’re sent away without a solution to our problem.”

Transitions are another prominent feature of older age that pose significant challenges. Unfortunately, there is limited knowledge about the specific needs of older autistic adults as they navigate major life changes associated with ageing, such as retirement and increasing morbidity. Professor Thom-Jones highlights the prospect of moving to residential care as particularly concerning for this population due to the magnitude of the changes involved and the perceived inability of the aged care system to provide individualised services and support.

“Putting us into an aged care home is an even bigger trauma than it is for anyone else because we’re being asked to change. I have to eat different food and sit in a room that’s a different colour, and have different furniture, and socialise in a way that I don’t feel comfortable. There’s just so much we really need to understand about that autistic experience.”

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

AUTISM, ADHD, AND AGEING: WELCOME TO THE UNKNOWN

(PART 2)

With the increasing prevalence of Autism and ADHD in a population that is rapidly ageing, how can Australia work towards ensuring there is greater awareness, acceptance and inclusion of these individuals, and their supporting communities, in their full diversity?

THE FUTURE: MAKING THE UNKNOWN, KNOWN FOR A SAFE AND INCLUSIVE SOCIETY

Australia’s National Autism Strategy, to be presented to Government for consideration at the end of 2024, intends to cover key reform areas for autism including access to services, healthcare, education, and employment.

In aiming to guide a more co-ordinated, national approach to supporting autistic people at each stage of life that enables them to fully participate in all aspects of life (in line with international human rights), it will be focused on four outcome areas: social inclusion; economic inclusion; diagnosis, services and support; and health and mental health (through the National Roadmap to Improve the Health and Mental Health of Autistic People which is also due for completion in late 2024). Furthermore, the strategy proposes to take an intersectional approach in addressing the structural barriers and hidden biases that impact negatively on the life experiences of individual autistic people, who regularly face multiple and overlapping forms of disadvantage and discrimination.

This reflects recent advances in the knowledge and understanding of the scientific and medical establishment that autism is not a disorder to be ‘cured’ but rather intrinsic to the individual (and for many people, their identity). ‘Older people’ are recognised in the strategy’s long list of cohorts in which existing policies and support services have been identified as failing - something that is well-known to Professor Thom-Jones.

“I think it’s a really complex space to be in - being ageing and being autistic. These are two groups of people who experience a lot of discrimination and a lot of stigma. And when you put both of those aspects in one individual there’s a lot of really negative things that people are going to be getting from the community, and a lot of things that are going to make it really difficult for them to connect, interact and feel welcome.”

Identifying evidence gaps regarding autism and ADHD in older adults will therefore require a structured and co-ordinated approach based on participatory models for translational research to engage those with lived

experience. Establishing unmet needs and priority areas, and developing effective, efficient and holistic responses to these, will also require strong collaboration between multiple stakeholders from different systems, services, and sectors – this includes those representing identified high-risk populations, such as older adults, and those who care for them in both formal and informal capacities.

Unfortunately, as Professor Bellgrove suggests, the lack of an existing evidence-base is further challenged by a dearth of expert clinicians in the public sector who identify, diagnose and treat neurodevelopmental conditions in adulthood and are able to build workforce capacity and capability in this emerging area.

“I think the first thing we have to do is actually ask older Australians with ADHD what their experience is and what their priorities are, either in terms of their unmet needs but also in terms of research. But there are also definite needs in skilling the health and aged care workforce to bring awareness of ADHD and older adults to all the different professional groups that might intersect with them - whether it be nurses, occupational therapists, geriatricians or adult psychiatrists. This is critical in dispelling the myth that ADHD is just a childhood presentation and, instead, putting it on the radar for the older person in front of them.”

Across various settings and services, systemic change is also required to equitably provide assessment, treatment and ongoing management of autism and ADHD, alongside the provision of evidence-informed care and social supports. Services need to be co-designed, coproduced and co-governed by multi-disciplinary teams, with individuals, families, carers, clinicians, support services and advocacy groups working in equal partnership. Shared care arrangements will also be critical to broadening understanding of personal, educational, occupational and social functioning at key interventions across the lifespan.

Finally, in acknowledging that characteristics, contexts, strengths and support needs may differ with age and stage of life, assessment of function in older adults with autism and ADHD will also need to consider the physical, mental and social changes associated with the ageing process. However, as Professor Thom-Jones emphasises, this requires urgent research to transform the unknown into the known.

“The experience of older autistic adults is absent across so many different service providers, individuals, community groups - it’s just not there. We know quite clearly that what constitutes a positive experience for an autistic child in school, or a positive experience for an autistic person in the workplace, is very different to a non-autistic person. Yet we make assumptions about what healthy ageing looks like for autistic people based on what we know healthy ageing looks like for non-autistic people. I think that’s the huge gap.”

Lead Author: Ms. Amy Parker and Practice Research Fellow at the National Ageing Research Institute (NARI) in Australia, focusing on health reform for older Australians. With a clinical background in physiotherapy and extensive project management experience, she leads efforts to implement evidencebased practices in home and hospital care. A founding member of NARI’s Knowledge and Research Translation Impact Committee, her interests include clinical governance, workforce development, and innovative service delivery models. As NARI’s Strategic Projects and Communications Manager, she also oversees government relations, stakeholder engagement, and organizational strategy.

Co-Authors: Professor Mark Bellgrove is the Deputy Head of School (Research) and a Professor of Cognitive Neuroscience at Monash University. He co-chairs Monash Neuroscience, a collective of over 600 researchers. Leading a multidisciplinary team, he studies the biological basis of attention and cognitive control. In 2021, he was elected a Fellow of the Academy of Social Sciences in Australia (FASSA) and recognized as Supervisor of the Year in his faculty. In 2023, he received the Vice Chancellor’s prize for Research Engagement and Impact for developing Australia’s first NHMRC-approved clinical practice guideline for ADHD. He also founded the Australian ADHD Professionals Association (AADPA) to promote evidence-based ADHD diagnosis and treatment.

Professor Sandra Thom-Jones is an autistic author, artisan, academic, and advocate. She authored Growing into Autism (2022) and Autistics in Academia (2024), and passionately champions the inclusion of autistic individuals in society. With over two decades in the university sector, she served as Pro Vice-Chancellor of Research Impact at Australian Catholic University (ACU). Currently, she consults through her website, Autistic Professor, offering services for autistic individuals and professional development for education, employment, and healthcare providers. Sandra is also an Honorary Professor at the University of Wollongong. Her research, conducted in partnership with the autistic community, has earned multiple awards from the Autism Cooperative Research Centres (CRC) for its impact and inclusivity.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

A GLOBAL EFFORT TO CURE ANGELMAN SYNDROME

Health and medical research has traditionally focused more on common conditions due to their widespread impact on the population and the recognition and relatability they attract.

As a result, disabilities caused by rare diseases are often underfunded and under-researched, leaving parent-led nonprofits to take on the challenging task of addressing these conditions. These organisations, often bootstrapped around kitchen tables with limited resource, work to develop strategies to raise awareness, fund research, support affected families—answering this unmet need.

WHAT IS ANGELMAN SYNDROME

Angelman syndrome (AS) is a rare genetic disorder caused by the loss of function of a single gene on chromosome 15 on the maternal side; since the paternal copy of the gene is imprinted, or silenced, this means affected patients do not produce any of a protein known as UBE3A. The resulting condition is marked by developmental delay, balance issues, severe speech impairments, and often seizures.

The mechanism that causes AS is particularly receptive to therapeutic approaches, as the silencing of the paternal copy means that there are multiple potential pathways for treatments. The Foundation for Angelman Syndrome's (FAST) approach to curing AS rests on four pillars: gene therapy to replace the non-functional UBE3A gene, unsilencing the paternal gene, downstream approaches targeting symptom rescue, and accelerating clinical trial readiness for effective treatments.

Research into AS saw a significant surge following a 2007 paper demonstrating the reversal of symptoms in a mouse model. This discovery served as the catalyst for the formation of FAST in the United States, and later its Australian chapter, with a mission focussed on a cure.

COLLABORATION IS KEY

In the pursuit of discovering cures for rare diseases such as Angelman syndrome, comprehensive strategic plans on both national and international scales are essential. Actively seeking out champions in the field and cultivating strong relationships to foster collaboration are essential. Progress can be accelerated by creating pre-competitive spaces and promoting data-sharing initiatives. This collaborative approach maximises efficiency and allows for a more cohesive effort towards achieving breakthroughs in research and therapeutic development.

While much of the scientific progress is being undertaken in the United States, a coordinated global effort is vital. This includes building the capacity to run clinical trials, deliver potential therapeutics, and collect comprehensive data to better characterise the condition and its trajectory and identify affected individuals. Addressing challenges related to underdiagnosis in diverse healthcare settings worldwide

is also critical. Furthermore, it is crucial to advocate for newborn screening and support for potentially high-cost therapeutics to ensure early diagnosis and access to treatments globally.

Accessing the population impacted by rare diseases is also challenging due to underdiagnosis and the lack of data on disease prevalence. These difficulties mean certain families of those with AS are living with significant disability and without access to community, education and potential therapeutics. Underdiagnosis also hinders the patient organisation’s ability to build strong communities and advance research effectively. Estimates of individuals affected by the condition are based on small datasets; newborn screening may be the only way to accurately determine true prevalence.

FAST’S MISSION IN AUSTRALIA

In Australia, initiatives that support the foundation’s overall mission align with the four-pillar approach developed by FAST headquarters. Australian efforts primarily focus on Pillar Four, “accelerating clinical trial readiness,” involving education on the underlying genetics of the condition and its implications for treatment approaches and clinical trials. FAST Australia funds specialised clinical nurses in trial-capable centres to ensure high standards of care nationwide. Additionally, FAST Australia contributes to global research through the Global Angelman Syndrome Registry, enhancing understanding of global demographics and disease characterisation for more effective trial and treatment strategies. Their work aligns with the National Strategic Action Plan for Rare Diseases by Rare Voices Australia, encompassing awareness, education, care, support, and research initiatives.

Supporting nonprofits in the rare disease space is crucial for advancing health and medical research into disabilities, as they often lead innovative research and advocacy efforts. These organisations, largely driven by parents and often lack adequate funding, play a pivotal role in deepening our understanding and developing treatments for rare conditions. The insights gained seem poised not only to benefit those living with AS but to contribute to broader medical knowledge, potentially accelerating advancements in other conditions as well.

Author: Meagan Cross is one of the founders for the Foundation for Angelman Syndrome Therapeutics Australia and serves on the United States board for the Foundation for Angelman Syndrome Therapeutics.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

UNIQUE STUDY SEEKS TO HIGHLIGHT THE UNMET NEEDS OF PEOPLE WITH TOURETTE’S

Researchers hoping to shed light on one of the world’s most under-recognised neurodevelopmental conditions – Tourette syndrome – have completed Australia’s first national survey to investigate the unmet needs of people with Tourette’s and other tic-related disorders.

An estimated 50,000 Australians – including 1 in 100 children – live with Tourette’s, a condition characterised by uncontrollable movements and vocalisations known as tics.

The presentation of tics varies, with some people experiencing subtle tics like blinking or throat clearing and others experiencing full body tics and vocalisations that severely affect their day-to-day life.

But with limited awareness in medical, education and government systems and no uniform approach or national guideline for the assessment, diagnosis or treatment of Tourette’s and other tic conditions, affected children, adults and their families are struggling to find timely or effective support.

“Wait times to gain a diagnosis are up to 3-4 years and access to therapies is lacking because there aren’t many

Ava, now 12, was diagnosed with Tourette’s syndrome at the age of 9, four years after she first began experiencing tics. © Cathy Britton

clinicians and allied health professionals who specialise in tic conditions,” says child disability researcher Dr Melissa Licari, from The Kids Research Institute Australia.

“In addition, despite the significant functional impact the condition can have physically, socially, emotionally and academically, Tourette syndrome and other tic conditions aren’t currently recognised as a disability by the National Disability Insurance Scheme (NDIS).

“People with Tourette’s and other tic conditions are falling through the gaps and this is negatively impacting on their quality of life.”

In a bid to generate the large-scale evidence needed to effect change, Dr Licari has spearheaded a national survey, Impact for Tourette’s, in collaboration with Professor Valsamma Eapen from the University of New South Wales (UNSW Sydney), and the Tourette’s Syndrome Association of Australia.

The online survey – co-designed through extensive community consultation, including with people with lived experience – is based on a successful model originally pioneered by Dr Licari to capture the experiences and challenges facing children and families living with Developmental Coordination Disorder (DCD).

Undertaken over a six-month period earlier this year, Impact for Tourette’s heard from more than 200 people affected by tic disorders, including adults with a tic-related condition and parents and caregivers.

While the data are still being analysed, preliminary findings reveal substantial delays in diagnosis, a lack of information following diagnosis, limited treatment pathways, and serious impacts on mental and physical health.

Almost half the respondents reported their tics have a moderate to extremely severe impact on their day-today life, with some experiencing poor mental health –including thoughts of suicide and attempted suicide. More than half of primary caregivers reported high or very high levels of distress, while almost two thirds of respondents reported they had sustained injuries as a result of their tics, including fractures and head injuries.

The team plans to present the findings and key recommendations in a national report that will be used to increase awareness, initiate action, and transform the community’s approach to people with tic conditions.

“In doing so, we can then implement solutions to help improve the lives of people with Tourette syndrome and other tic conditions,” Dr Licari says.

Top of the wish-list is a national guideline for the identification and management of Tourette’s and tic disorders.

“There is an urgent need for an Australian clinical guideline that will provide clear, evidence-based guidance on the identification, diagnosis and treatment of tic disorders,” Dr Licari says.

“The absence of this kind of unified approach is significantly compromising the care and outcomes of individuals living with tic disorders and their families.”

The team has already led a submission to the Joint Standing Committee of the NDIS advocating for such a guideline and laying out a proposed pathway for its establishment.

“With the right support we could get a national guideline up within two years that would, for the first time, provide standardised protocols and ensure consistent, effective, evidence-based care across healthcare settings,” Dr Licari says.

The Impact for Tourette’s report is expected to be published later this year.

WHAT IS TOURETTE SYNDROME?

Occurring in 1 per cent of school-aged children, Tourette syndrome is a neurodevelopmental disorder characterised by uncontrollable movements and vocalisations known as tics.

Tics can be simple (e.g., blinking, grimacing, throat clearing, sniffing) or complex (e.g., movements involving multiple body parts, repeated words, coprolalia) and can impact physically, socially and emotionally on daily living, academic and occupational achievement, and participation in leisure and play. Intensity of symptoms varies from person to person and for some people the resulting disability can be substantial.

Symptoms usually appear between 4-6 years of age, with tics often coming and going over time, varying in type, frequency, location and severity. Tics often reach a peak during adolescence, becoming less frequent or less severe as a person enters adulthood. For some people though (~25%), Tourette’s is a lifelong condition that can worsen over time.

The causes of Tourette syndrome are not well understood. It is a complex condition likely caused by a combination of genetic, environmental and immunological factors.

Author: Dr Melissa Licari is a Senior Research Fellow in Child Disability at The Kids Research Institute Australia. She is currently leading a program of research within the team investigating the clinical presentation and intervention for movement-related difficulties in children with neurodevelopmental and neurological conditions.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

RESEARCH REDEFINING POSSIBILITIES FOR PEOPLE WITH CEREBRAL

PALSY

Paediatric

Cerebral palsy research and treatment has undergone significant advancement over the years. Supported by a generous Gift in Will, Cerebral Palsy Alliance (CPA) embarked on a mission to prevent cerebral palsy (CP) and address the challenges faced by children and adults with CP across Australia and around the world.

In 2005, approximately 1 in 400 babies each year were diagnosed with CP in Australia. Today, that number has decreased significantly to approximately 1 in 700 babies – a remarkable, 40% reduction in rate, accompanied by a decrease in severity. Our early detection clinics can now identify children who are at risk of CP from as young as 3 months – providing an opportunity for early intervention.

Cerebral palsy is an umbrella term that refers to a group of movement disorders. It is the most common childhood disability, affecting 1 in 700 births. In most cases, it is caused by an injury to the developing brain either during pregnancy or shortly after birth. It is a permanent life-long condition.

Research has been fundamental in creating and enabling innovations that transform the landscape of surveillance, diagnosis, intervention, treatment, technologies, and therapies for CP. Collaboration between researchers,

neurologist Esther Tantsis, and Research Fellow and Physiotherapist Anna te Velde assessing a baby at the CPA Early Diagnosis Clinic in Prairiewood.

clinicians and people with lived experience across Australia and internationally has been fundamental in transforming our understanding of the causes and prevalence of CP, how we diagnose and treat CP and the new therapies and technologies which can transform the lives of children and adults who have CP.

TRANSFORMATIVE MILESTONES

Prior to 2005, there was no formal reporting of CP in Australia. The Australia Cerebral Palsy Register (ACPR) brought together researchers, clinicians and people with lived experience across all states and territories to create the largest single country CP register in the world.

The ACPR has now released its seventh report, and data from the register has been used extensively in research to report population trends, identify risk factors, and the impact of new interventions. Working together with local and international collaborators, CPA also had the privilege of supporting the establishment of CP registers in other countries, and is proud to support the work of the Global Low and Middle Income Register.

Partnering with people with lived experience of CP throughout the research cycle greatly enriches projects and informs the direction of meaningful, impactful research for the CP community.

CP Quest was initiated in 2015 when consumer-led research was growing. Today, there are more than 140 members with lived experience in CP Quest who have volunteered to be involved in research projects, collaborating on at least 13 new projects in 2023. CPA also supports the Global CP Registers in establishing their own CP Registers.

In 2008, the first of three Early Diagnosis Clinic (EDC) was opened. These clinics were the first to provide a multidisciplinary team of paediatric neurologists, social workers, occupational therapists, physiotherapists, and speech pathologists, for fast tracked diagnosis for children under 6 months of age. Diagnosis of CP used to be after the first year of a child’s life.

Today, this age is now reduced to a national average of 19 months, and at CPA’s EDC clinics, infants as young as 3 months can be diagnosed. They have provided more than 400 infants and families with a diagnosis, and empowered families with information and opportunities. Early diagnosis harnesses neuroplasticity, fast tracks access to early interventions, supports families and better outcomes.

Development and implementation of intervention programs such as the CPA Early Response Therapy, and the Early Childhood Intervention Guide have enabled families to access therapies that change lives.

CPA conducted the largest early intervention study in CP, the GAME (Goals Activity Motor Enrichment) trial, providing evidence for diagnosis and intervention of CP. We continue to push the boundaries with our NHMRC Centre of Research Excellence, with Directing Research Into Very Early Cerebral Palsy’ (DRIVE CP), aiming to diagnose babies earlier, provide early intervention, and

further decrease the severity of CP; and the formation of the CP Global Clinical Trials Network supported by the Danish Elsass Foundation, to accelerate new treatments for CP, and facilitate these treatments into routine care.

FUTURE

CPA continues to be focused on the outcomes for people living with CP by engaging and integrating the CP community on impactful and innovation in our research directions. Two frontiers were identified for early adoption: assistive technologies, and stem cell therapies.

CPA’s Technology team has been collaborating with research groups, clinicians and people with lived experience to develop innovative technologies that provide increased opportunities for people with CP to communicate and participate.

These include developing SwitchApp to allow computer control with sounds and facial gestures, Techtoys, creating accessible toys to allow children with limited hand function to engage in play, and building the world’s first database of dysarthric voices, My Voice Library, for children with CP.

My Voice Library will store crucial data to enable researchers and engineers to develop new communication solutions to increase communication ease and speed. CPA also launched REMARKABLE, the tech startup arm to empower Disability Tech innovators by providing the training, capital and networks they need to create a future that is accessible, equitable and inclusive for all. Since 2016, Remarkable has accelerated the development of 130 startups, whose products have impacted over 300,000 customers and attracted over $78 million in grants and investment.

One of the highest priorities for people with CP and their families is stem cell therapies. CPA is leading and collaborating on several studies investigating the safety and effectiveness of various cell treatments and other advanced therapeutics towards the prevention and treatment of CP.

Our goals centre on information-sharing and progressing access to cell therapies in Australia, in particular via clinical trials. For example, CPA researchers are collaborating with scientists and clinicians at Monash University and Monash Health on trials testing umbilical cord blood treatment for babies born extremely preterm at risk of developing CP.

Most people with CP live in low middle income countries and we are collaborating with numerous countries on a global LMIC CP register, early detection and intervention programs as well as providing services and assistive technology with the hope of launching prevention programs in the future. CP is a global issue.

Author: The Cerebral Palsy Alliance Research Institute was established in 2005 to support the world's best and brightest cerebral palsy experts to accelerate breakthroughs in cerebral palsy prevention and treatment.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

WHERE DO I START?

Tailoring information for serious trauma injury survivors.

INTRODUCTION

Information needs are critically high in people with serious trauma injuries and their families/carers due to the rapid onset and life-long consequences. Effective information provision supports active engagement in decision-making, recovery and adaptation to long term disability. There is currently no clear way of providing information ensuring it will be accessed, understood, and used by people with serious trauma injuries and their families/ carers.

AIMS

This study aimed to develop tailored/localised resources to augment existing resources for people who have traumatic injuries and their families/carers. Key objectives included to: describe their information needs and current practice/gaps; co-produce and pilot-test an intervention to provide tailored information.

METHODS

This study was conducted in a metropolitan area, across three different public health rehabilitation services in Adelaide. Ethics approval was gained from the Central Adelaide Local Health Network (CALHN) (Ref. No 17235 ) and Northern Adelaide Local Health Network Governance (Ref. No 22-135). This study received funding from the Lifetime Support Authority (LSA) who provide high quality

treatment, care and support for people who are seriously injured in motor vehicle accidents.

Using an Integrated Knowledge Translation (ITK) approach, the intervention will be co-designed, integrating the narratives of serious trauma survivors and health professionals providing acute care and rehabilitation. IKT has been shown to increase the relevance, applicability and impact of research results, therefore improving health services and products (Boland et al. 2020).

RESULTS

A total of 12 trauma injury survivors (4 female, 8 male, between 24-71 years of age) recruited for interview, who had a variety of injuries including amputation, brain injury and spinal cord injury. A total of 5 family members or carers were recruited for interview.

A total of 6 focus groups were conducted across acute hospital (n=2), rehabilitation (n=3) and LSA (n=1). Health professionals came from a variety of disciplines including nursing, PT, OT, SP, SW, EP and LSA planners.

The co-design groups were recruited from interview and focus group participants and brought together 3 LSA planners, one acute OT, four serious trauma injury survivors, 2 spouses, and 6 research team members (SG, MVB, EL, EE, SC, BL).

4.1 INTERVIEW AND FOCUS GROUP FINDINGS

The interviews and focus groups were coded and identified key information gaps related to managing grief, coping with change to identity, and understanding rehabilitation pathways, peer and carer support, as well as discharge support. Findings suggested that preferences for delivery method and timing of information provision is highly variable, and that having multiple formats (e.g. written, video, audio) easily accessible at all stages of recovery is desired.

4.2 CO-DESIGNED RESOURCES DEVELOPMENT

Co-design Process

6 co-design sessions were conducted between October 2023 and March 2024. Sessions lasted between 60-120 minutes. The content of each session can be seen in Figure 2 above.

The results of the co-design process can be seen in table 1.

Table 1: Result of the co-design process

Focus Area Discharge Support

Content Getting ready to go home

Life after injury

Mental health

Rehabilitation pathways

Information for carers

Format Written (online and paper)

Video Component to support

Audience Survivors and their carers/families prior to discharge home (in acute hospital or inpatient rehabilitation settings)

Feedback from the co-design group on the process included desire to help others going through the same journey. They felt empowered and useful, and part of the solution to challenges they faced in their own recovery. The

space was inclusive and collaborative, and survivors did not feel that there was any power imbalance. Improvements could include having a face- to- face session to introduce participants, and a process for checking in with participants 1-2 days after the meeting as they often thought of suggestions after the meeting had finished.

3.3.2 RESOURCE DEVELOPMENT

The resource was developed as a printable booklet entitled “Heading Home”. The videos will be integrated into the website or accessed via QR code in the printable booklet. The website will be hosted by LSA.

4. PRACTICE IMPLICATIONS

1. Discharge home is one of the most vulnerable times for serious trauma injury survivors and their families. Ensure that they have all the information required and contact details for follow up services to make this a successful transition. The resource developed can be used to assist this.

2. Information should be presented in a variety of formats including a written component to refer back to when the health professional is no longer available.

3. Serious trauma injury survivors and their carers found the co-design process to be empowering and inclusive.

5. CONCLUSION

Information needs for serious trauma injury survivors are diverse. It is important that resources be presented in multiple formats. A group of survivors, family members, health care professionals and LSA planners co-designed a resource that met the information needs of the survivors and their carers, encouraging them to talk with their health care team.

Authors: Professor Stacey George, Occupational Therapy Clinician and Researcher Research Team: A/Prof Maayken van den Berg, A/Prof Elizabeth Lynch, Emma Edwards, Saran Chamberlain, Dr Sheruni Wijesundara, Dr Shaopeng Wu, A/Prof Belinda Lange, Dr Joanne Murray

Figure 1: The key phases of this project.

Figure 2

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

EPIC-CP PILOT TO BENEFIT ALL AUSTRALIAN

CHILDREN LIVING WITH DISABILITIES

Equitable Pathways and Integrated Care in Cerebral Palsy (EPIC-CP) is a global-first social prescribing intervention co-designed for and by people with cerebral palsy.

EPIC-PC has the potential to help not only the cerebral palsy community, but also nearly 450,000 Australian children living with disabilities.

EPIC-PC is a pilot randomised controlled trial currently underway (2023-2024) at the NSW Paediatric Rehabilitation Services that explores the feasibility and acceptability of social prescribing to address unmet social needs. The trial engages families with a Community Linker and/or resource pack to access needed supports and services.

Supported by Luminesce Alliance, Sydney Children’s Hospitals Foundation, and Cerebral Palsy Alliance Research Foundation, the EPIC-CP team co-designed the social prescribing program with young people with cerebral palsy, parents/carers, and service providers at the three Paediatric Rehabilitation Services of the New South Wales Children’s Hospitals.

ADDRESSING THE SOCIAL DETERMINANTS OF HEALTH

Cerebral palsy (CP) is a lifespan disability and the most common cause of physical disability in childhood.

Children with CP who experience socioeconomic disadvantage are more likely to have more severe health outcomes due to unmet social needs that impact health, i.e. food insecurity, poor housing, educational, and transport barriers.

Social prescribing addresses unmet needs by identifying these unmet social needs systematically and sensitively with a ‘Community Linker’ (a trained non-medical staff member) helping them access the health, social, and education services that they need.

CO-DESIGN

AND EXPERIENCE OF PILOTING

Key to the success of this study was the involvement of families and clinicians as co-design research participants throughout. More than 200 participants contributed to the co-design research phase and the project was overseen by Research Advisors with lived experience of CP.

During co-design, many families of children with CP reported experiencing several unmet social needs affecting living conditions, health outcomes, participation, families’ well-being, family functioning, and access to services.

The complexity of systems made it difficult for families to address these challenges, which were made more difficult by the variation in the quality of services, unclear eligibility criteria of services, and administrative demands, (47%).

Feedback from co-design participants included:

“I find the less advantaged you are, the more systems you need to negotiate. It actually snowballs, it becomes a bigger issue.”

“Having an understanding, even knowing what’s out there in the system is difficult for us and we work in the system.”

Rigorous co-design methods and continuing collaboration with stakeholders have ensured the creation of a programme that is responsive to the needs of its endusers and importantly, has standardised the identification and support for unmet social needs, with the intention of purposefully embedding the design in the current Australian health setting.

The pilot randomised controlled trial commenced in 2023 and will continue until late 2024. Currently underway, this pilot trial aims to support 120 families to access a Community Linker and/or resource pack.

To date, this pilot has demonstrated high feasibility of standardised universal identification of unmet social needs, with approximately two-in-three families reporting 1 or more unmet social need. The most common needs are government benefits and vouchers (76%) followed by transport, bills and childcare/schooling

NEXT STEPS

Further to EPIC-CP, Luminesce Alliance funding has supported lead researchers Professor Sue Woolfenden and Dr Katarina Ostojic to partner with other clinical groups passionate about implementing social prescribing initiatives in their local settings. This includes collaborations with teams from community paediatrics, brain injury services, and paediatric cancer services.

This collaborative partnership between funders, people with lived experience of CP, researchers, and clinicians was leveraged to successfully receive a $1.46 million Medical Research Futures Fund grant for the next phase of research (2023 MRFF Clinician Researchers Initiative). The MRFF project will evaluate the effectiveness of the social prescribing program for children with neurodevelopmental disabilities in NSW, with robust implementation and economic evaluations.

CONCLUSION

The outcomes and further funding of the EPIC-PC program represent a significant step forward in improving healthcare policy to support disadvantaged children and young people. The EPIC-CP pilot demonstrates how social prescribing can help not only the cerebral palsy community but also nearly 450,000 Australian children living with disabilities.

Authors: Professor Sue Woolfenden is the Director of Community Paediatrics at Sydney Local Health District and Professor of Community Paediatrics at The University Sydney. She has 30 years of extensive clinical expertise in working with children from priority populations. Sue has led research that investigates the impact of inequitable health service provision on child health outcomes in the early years of childhood in Australia and globally.

Dr Katarina Ostojic is a Research Fellow at The University of Sydney and Adjunct Associate Lecturer at The University of New South Wales. She is a mixed-methods researcher with a strong focus on addressing inequities in health care and supporting young people and their families to improve their mental health, psychosocial functioning, and participation.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

SUPPORTING NEURODIVERSITY IN THE HEALTH WORKFORCE

ABSTRACT

Inclusive approaches to learning, teaching, and research are at the heart of academic life to ensure all stakeholders can thrive. Health researchers and educators, with their deep understanding of disability and socioeconomic factors underpinning inclusivity, are well-positioned to role-model these inclusive approaches. However, there is increasing anecdotal evidence that neurodivergent health students, educators, and researchers face significant challenges in meeting their full potential due to insufficient support within their places of study and work. Using a case study, this article outlines individual actions and institutional practices that can be implemented to support the future and current health workforce.

Kelly often takes photographs looking up through the tree canopy while walking in nature with her family. This image represents the importance of cultivating mindful awareness and perspective-taking so that we can see the bigger picture. Within this image, the trunk and branches of the tree signify being grounded in our own lived experience, whilst at the same time forever reaching upwards and outwards through a growth mindset. Whilst many of the leaves are in shadow, signifying the personal challenges and environmental barriers we all face, there are also many leaves that are illuminated by the sun, signifying the personal strengths and environmental facilitators that lead to thriving. Finally, the perfect blue sky beyond the tree canopy is symbolic of optimism and hope for an inclusive future.

INTRODUCTION

Approximately 20% of the population are neurodivergent, with anecdotal and research reports suggesting the prevalence is similar among future and current health professionals. With effective strategies, supports, and adjustments, neurodivergent students and employees can address their difficulties, and build on their strengths, to thrive within the health workforce.

Inclusive mindsets and cultures facilitate this outcome through creating psychologically safe environments where neurodivergent individuals can share their challenges, express their needs, ask for support, and negotiate solutions. Inclusive individual actions and institutional practices are grounded in curiosity, compassion,

acceptance, strengths-focus, empowerment, collaboration, flexibility, and innovation.

It is easy to assume that health professionals in leadership roles within clinical, research, and education settings have the competencies to embed these inclusive approaches into the health workforce. However, an unmet need remains where neurodivergent health professionals are unable to thrive without adequate support from their places of study and work.

CASE STUDY

In this case study, we examine the experiences of “Sadie”, an early career health researcher and mother of neurodivergent children, who faced significant disability-related challenges at work. Rather than placing a spotlight on larger precipitating and perpetuating factors, this story provides insights into how powerful inclusive approaches can be on a smaller scale.

As is common for health professionals working in universities and research institutes, Sadie’s research, supervision, and administrative workload was consistently high. Sadie frequently felt overloaded and was constantly juggling to address the most urgent priority in each moment. Several years of rapid responses to COVID-19, both at work and home, compounded these challenges.

As a health professional, Sadie recognised that she was experiencing symptoms of burnout. She also had the clinical knowledge and skills to take proactive and evidence-based steps to improve her mental health. When these steps were not successful, Sadie contemplated that neurodivergence may be a factor in her continuing struggles. Sadie sought a formal diagnosis of a neurodevelopmental condition once she had reached a personal threshold of struggling to cope with everincreasing work and other life demands.

When Sadie was formally diagnosed with ADHD (with an indication that autism was also highly likely), she described an overwhelming sense of relief and a shift in her selfperception from a deficit-focus to a more strength-based support-needs focus. While the process of diagnosis was not straight-forward, it had restored a sense of hope through improved self-acceptance and a belief that disclosure to her workplace - largely populated by health professionals - would lead to much-needed support. Although her initial expectations were that reasonable workplace adjustments would begin to mitigate her ongoing stressors, this was far from her reality. It became clear to her that a combination of misconceptions of neurodevelopmental conditions, and a pervasive level of stigma regarding mental health conditions within her workplace, contributed to her feeling further, rather than closer, to genuine care and career success.

Despite these workplace issues, Sadie reported one stand-out experience that helped her to navigate her experience in a way that enabled her to eventually improve upon her professional circumstances. She believes that having access to informal and formal research mentors

outside of her own workplace was a turning point in her disability journey. Her mentors actively listened to her experience, understood and acknowledged cultural challenges within the research sector, supported her experiential reality, and assisted her to focus upon personal strengths. Her mentors also helped Sadie access institutional mechanisms, such as flexible arrangements and leave entitlements. This mentoring experience was fundamental to Sadie regaining a sense of control over her health and workload, along with once again feeling included in her profession as a health researcher.

Being encouraged to embrace self-acceptance, experience a sense of belonging and remain mindful of approaching struggles without self-judgment meant that Sadie felt more understood and less confused about her own identity. She also began to see that her needs were real, and not just an inconvenient truth for those around her. This alone was a critical step in Sadie’s long-term recovery and eventual re-engagement in the workplace. This included one mentor sharing their own past challenges and lessons learned, whilst leaving enough time and space for Sadie to make an informed and autonomous decision about her own circumstances.

CONCLUSION

A sustainable health workforce relies on individuals and institutions embedding inclusive approaches to ensure that all health professionals, including those who are neurodivergent, can thrive and improve the health status of the communities they serve. At the heart of these inclusive approaches is creating supportive environments where it is safe for neurodivergent individuals to disclose their diagnosis, and be provided with reasonable adjustments, without fear of stigma or retribution. All future and current health professionals should be able to compassionately identify support needs, and facilitate appropriate supports, for not only healthcare consumers, but also for peers within the health professional community.

Authors: Dr Kiah Evans is a Senior Lecturer within the Health Professions Education team at the University of Western Australia. She draws on a background as an occupational therapist, autism researcher and postgraduate educator to advocate for greater inclusivity, wellbeing, and sustainability within our diverse health workforces. Dr Kelly Valentin is a Master of Health Professions Education candidate at the University of Western Australia and Associate Professor in the School of Medicine at the University of Notre Dame Australia. As a neurodivergent doctor, her academic and research focus upon fostering wellbeing, identity and inclusion in medical education is influenced by both professional and lived experience.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

UNDERSTANDING AND IMPROVING THE QUALITY OF SUPPORT FOR SEVERE PEOPLE WITH INTELLECTUAL DISABILITIES IN GROUP HOMES.

People with severe intellectual disabilities living in small group homes are rarely visible in the media or policy debates.

This small group, an estimated 31,509 people are 5.2% of participants in the National Disability Insurance Scheme. Yet, the group home services they use, now known as ‘supported independent living’ account for 25.2% of the NDIS budget (approx. $8b).

The costs are indicative of the high levels of support people with severe intellectual disabilities need to be engaged in everyday activities, included in society and exercise choice and control; all rights embedded in the NDIS and the 2008 United Nations Convention on the Rights of People with Disabilities.

Despite the high cost of services and ambiguous policy commitments, our research demonstrates the variable quality of group homes services, which the Disability Royal Commission identified as sites of abuse and neglect. Unlike the conclusion of 4 of the 6 Commissioners, that the problem was the group home model itself and they should all be closed, our research shows the pivotal role of staff practice, demonstrating that a poor quality of life for people in group homes is not inevitable and practice can be improved.

We report on a fifteen year longitudinal study of group homes across Australia. The study aims to improve the quality of life of people with intellectual disabilities in group homes by identifying factors that influence the quality of staff practice, developing resources to support organisations to embed good practice and providing annual feedback about performance and outcomes.

THE CRUCIAL ROLE OF ACTIVE SUPPORT

Core to this research is the staff practice ‘Active Support’. In 2009, when the study started, the evidence was clear - if staff use Active Support then the people they support have a better quality of life; are more engaged and exercise more choice and control. Our 2018 realist review confirmed this showing Active Support was the strongest predictor of quality of life in group homes. Active Support is defined as an:

Enabling relationship where staff provide sufficient facilitative assistance to enable service users to take part in meaningful activities and relationships, irrespective of the degree of intellectual disability or presence of additional problems (Mansell & Beadle-Brown, 2012).

Active Support was developed in the UK and introduced to Australian services in the early 2000s. Our 2009 study found that only one of the six organisations, that had been training staff in Active Support for over 5 years, was delivering consistently good support. Clearly training staff in Active Support was not enough.

Organisational theory suggested many potential factors influenced use of Active Support and its sustainability in services. Identifying the most important ones was the challenge. We confronted research hurdles including finding more services with good Active Support, a data set big enough to statistically test the influence of large number of potential variables at various levels (individual, service, organisation) and the need to use resource intensive observational methods to include people with high support needs who could not self- report.

From 2013, we embarked on the annual collection of data from organisations about the quality of staff support, service user engagement in activities, and service culture, as well as staff, service user and organisational characteristics. We used a mixed method, with observation of staff practice at the centre. We developed free on-line training resources illustrating staff use of Active Support ‘Every Moment has Potential’ and Frontline Practice Leadership which are now widely used, and supported organisations to deliver hands on training to

staff and mangers. The number of organisations involved in the study varied from 6 in 2009 to 14 in 2018 and 22 in 2024.

WHAT DID WE FIND

Between 2013 to 2018 the average quality of Active Support practice increased significantly. Although variable from year to year, a critical mass of services were doing good Active Support by 2017. A multi-level analysis of cross-sectional and longitudinal data sets (461 service users, 134 services, 14 organisations, 5 states) provided rigorous evidence about predictors of good Active Support: at the organisational level; senior leaders with shared understanding of Active Support who value practice: at the service level; staff with confidence in management and trained in Active Support, a culture of supporting service user wellbeing no more than six people in a service with relatively homogenous support needs: and at the frontline management level; strong practice leadership for support workers, practice leaders who are present in services and know staff and the people they support.

These predictors act as indicators of what is necessary for good Active Support and good Quality of Life outcomes for people living in group homes, to guide service providers, regulators and funders.

COVID disrupted the services and our 2022 data showed a decline in Active Support. We have shown that good support is possible in group homes and the challenges now are regaining losses due to COVID and the turbulent policy environment of the NDIS, and identifying factors that influence the strength of practice leadership one of the key predictors of Active Support.

Author: Professor Christine Bigby, Director of Living with Disability Research Centre, La Trobe University

Clip from Skills for Active Support

Figure 1. Five Essentials of Active Support

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

AMPLIFYING GENETICS EDUCATION IN SCHOOL CURRICULUM FOR HIGH SCHOOL STUDENTS WITH INTELLECTUAL DISABILITY

Recent research shows that people with intellectual disability have both the desire and the capability to learn more about their own genetics (Strnadová et al., 2021).

Although NSW schools are required to deliver this content to all students, many students with intellectual disability are missing out due to a lack of resources and teacher training.

In today’s rapidly advancing world, a basic understanding of genetics is increasingly essential. With this understanding, individuals can make more informed decisions about their health and appreciate the profound impact of genetics on science.

This is particularly significant for people with intellectual disability, as genetic literacy is critical to their long-term health and wellbeing outcomes. A genetic diagnosis can guide appropriate health surveillance and preventative healthcare which can in turn reduce premature mortality, including potentially avoidable deaths (Hirvikoski et al., 2021), and improve psychological health. A diagnosis may also have significant personal value, helping to connect people with peer support groups and offer reproductive choice and self-knowledge (Strnadová et al., 2023).

This highlights the need to ensure students with intellectual disability can both access and participate in foundational

genetic education at school, as unfortunately, for many of these students, this may be their only formal opportunity to learn this critical content.

In our recent study, we heard that students and young people with intellectual disability showed a desire to learn more about health and genetics, in ways that would enable them to become informed health consumers. They identified enablers such as teachers’ knowledge and consistent use of reasonable adjustments, greater understanding and compassion from teachers about their disability, and updated professional development for teachers in genetics and pedagogy. They asked for accessible, person-centred and respectful teaching and teaching resources – and teachers who know and understand the content.

“… the doctor can train the teacher how to talk to them… [because] teachers don’t know how to explain it. They’d teach it all wrong” (Imogen, student with intellectual disability)

Teachers were also interviewed and were unified in acknowledging the importance of teaching genetic content to students with intellectual disability, noting it could be an extremely sensitive area. They recognised that resources must reflect the needs of the learner, both in what is taught (content) and how it is taught (pedagogy). However, these teachers, though willing to teach genetic content, need to be given these resources and the required professional development to use them meaningfully. Relevant genetics educational resources for people with intellectual disability are scarce (Strnadová et al., 2021), and teachers identified a need for accessible, differentiated resources to meet the needs of all learners (McKnight et al., 2021).

All fifteen teachers were able to articulate the importance of teaching genomic content to students with intellectual disability, with thirteen teachers naming genetic science literacy as ‘a tool of empowerment and self-determination’.

However, they also identified barriers to teaching genetic content such as their self-identified lack of understanding and training in genetic, no awareness they were teaching genetic, no access to science labs and no formal education in science. Even five science teachers felt that their genetic education was dated and whilst they learned about genetics, they were not taught how to teach it and they did not: “…specifically learn about intellectual disabilities in the science course, though, or especially how they would pertain to an education setting.” (Beck, science teacher in a mainstream school).

Teachers also reported concerns and a lack of confidence in delivering genetic content that may relate to their students’ disabilities, or contain sensitive topics such as amniocentesis, sex education, genetic disorders and eugenics. However, some teachers reported successes with speaking openly to students about disability, and Candice, a science teacher in a support class in a mainstream high school, was passionate about providing students with a safe environment to talk about genomics: “but if they don’t have an understanding and they don’t have someone they can talk to about these things, and we can talk as a class in a safe environment, then where else would they get that information from? … Why would you not just talk to them about all of these things? … So important that we can talk in a safe environment about the ethics of things … And they ask questions. They have an awareness, they have access and they know about these things.” (Candice).

Students with intellectual disability need to learn about genetics in a safe, supportive environment, such as school. It shouldn’t be “up to me to be curious” (Sonny, young person with intellectual disability). By supporting teachers, families and students with intellectual disability to understand the significance and relevance of genetic content, engagement will increase, and real-world connections will be made for these students. Furthermore, giving teachers adaptable, accessible resources using

GeneEQUAL in schools

evidence-based practices as key pedagogy, will reduce the time and cognitive demands of them creating bespoke resources in an ever-evolving field – thus giving them more time and energy to engage with their students and collaborate with colleagues and families. With these recommendations for future practice, students with intellectual disability can become informed health care consumers and have the skills to navigate the health care system.

Author: The authors are all members of the GeneEQUAL research program. GeneEQUAL team works on many projects spanning the areas of health and education to make genetic and all health care inclusive, person-centered and respectful of people with intellectual disability. The team includes people with intellectual and other disabilities, researchers, health care workers and educators.

Karen-Maia Jackaman and Jennifer Hansen are research assistants at the UNSW Sydney, Professor Iva Strnadová is based at the School of Education, UNSW Sydney, and leads the research agenda at the Disability Innovation Institute at UNSW Sydney, Julie Loblinzk OAM is a Research Fellow, Skie Sarfaraz and Sam Hurd are co-researchers at UNSW Sydney, Dr Joanne Danker is a lecturer at the School of Education, UNSW Sydney, Professor Jackie Leach Scully is Director of the Disability Innovation Institute at UNSW Sydney, Bronwyn Terrill is a science communicator, educator, researcher and writer at the Garvan Institute of Medical Research, Jackie Boyle is a genetic counsellor at the NSW Health Genetics of Learning Disability Service and Dr Elizabeth Emma Palmer, is a Clinical Geneticist at Sydney Children’s Hospitals Network Randwick and Senior Clinical Lecturer at UNSW Sydney.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

INSPIRATION IS NOT A DIRTY WORD!

Disability inspirational porn should be avoided.

But through a powerful combination of strong leadership and lived experience-led and codesigned research, the Centre for Disability Research and Policy (CDRP) is inspirational in the sense that it is generating evidence-based ways of advancing the social and economic inclusion of people with disability in Australia and elsewhere.

INTRODUCING THE CENTRE FOR DISABILITY RESEARCH AND POLICY (CDRP)

The Centre for Disability Research and Policy (CDRP) at The University of Sydney is founded upon a valuing of lived experience-led, co-led and co-produced research. For it is this solid and inclusive foundation which drives the Centre’s important work towards informing the evidencebased policy and practices that are needed to improve the lives of people with disability.

As a neurodivergent researcher who has been with the CDRP since 2014, and with extensive previous experience working as a policy professional in a public service where my approved accommodations were inconsistently received, I can confidently say that welcoming, safe and accommodating work settings do not just magically appear. These inclusive work environments are purposefully created by inspirational leaders with and without disability.

Leaders like Professor Jennifer Smith-Merry, Director of the CDRP and genuine disability ally who move

beyond inclusive rhetoric to take strong, ethical and inclusive actions. Actions such as creating employment opportunities for researchers with disability to display their abilities in the setting of research directions and in the conducting of disability studies.

Putting the ‘Nothing about us without us’ disability inclusion mantra into practice in a disability research context, the Centre currently has created and recruited to two Lived Experience Postdoctoral positions. Deafblind researcher, Dr Annmaree Watharow and I were the successful candidates for these roles.

THE CENTRE’S LIVED EXPERIENCE-LED AND CO-PRODUCED STUDIES

The Centre has successfully completed and is progressing a multitude of lived experience-led and co-produced disability studies. To follow are some recent research examples in which I have had the pleasure of leading, coleading or supporting.

In 2024, Dr Annmaree Watharow and I co-led research that revealed challenges and supports for deafblind and neurodivergent researchers and participants. Our case study called on our respective lived experiences of disability to develop an evidence-based roadmap offering practical directions towards inclusive qualitative research design and practice. To our best knowledge, this is the first qualitative study to be co-led by a Deafblind and a Neurodivergent researcher. This research has been recently published in the Journal of Humanity and Social Justice (published here).

My leadership of a mixed methods study with Professor Jennifer Smith-Merry and Dr Kim Bulkeley about the underrepresentation of people with disability employed in Australian disability services revealed that only half of Australian disability service organisations employ at least one person with disability, and less than a quarter (24 percent) of these organisations included representation of disability on their boards. Crucially, our research informed questioning during proceedings at the Royal Commission into the Violence, Abuse, Neglect and Exploitation of people with disability Public Hearing 32 held in Brisbane from 13-17 Feb 2023. Our findings were published in the Social Policy & Administration journal in January 2023 (published here).

In 2023, I supported research led by Associate Professor Nicola Hancock and with team members Associate Professor Justin Newton Scanlan and Deborah Hamilton which identified NDIS access barriers for people with

psychosocial disability for a National Mental Health Commission funded study. The Commission and the Department of Health utilised our research to gain a better understanding of the multiple barriers that can impede access to the NDIS for Australians with psychosocial disability. The findings of this co-designed study were published in 2023 in the Australian Journal of Social Issues journal (published here).

THE IMPORTANCE OF CREATING CAREER STABILITY FOR RESEARCHERS WITH DISABILITY

Much research about disability continues to be produced by research teams without any representation of researchers with disability. To not have any representation of disability among teams conducting studies about disability is disrespectful and ableist. Australian universities therefore need to value more researchers with disability and invest in their career stability through ongoing lived experience researcher positions. ‘Nothing about us without us’ applies to disability research just as much as it does to anything else.

SOME FINAL WORDS ABOUT INSPIRATION IN A DISABILITY RESEARCH CONTEXT

The late Australian disability advocate Stella Young rightfully objected to disability inspiration porn. It is here where people with disability who through their survival in a world that is largely not designed for them can be held up as objects of inspiration for people without disability. But what can be genuinely inspirational are the actions of researchers with and without disability who work collaboratively in their determined efforts to find evidence-based ways of redressing the ‘othering’ of people with disability. In this light, the inclusive CDRP is truly inspirational!

Author: Dr Damian Mellifont leads and contributes to studies that advance the economic and social inclusion of people with disability. Damian is a member of the Centre for Disability Research and Policy (CDRP) leadership team at The University of Sydney. As a Lived Experience Postdoctoral Fellow, Damian has been an active member of the Centre over the last decade, with extensive prior experience in government policy.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

MARLOW HAMPSHIRE

Leadership development for EMCRs and Aspiring Scientific and Technical Leaders

Many technical and scientific managers are not trained in the necessary core skills needed to effectively lead scientific, analytical, clinical or manufacturing project teams. Many up-and-coming leaders indicate that they want more training to prepare for the challenges ahead that they face in their work environments.

Marlow Hampshire has been privileged to be chosen to-date by over 46 Australasian Universities to assist with leadership capability development as well as by numerous Medical Research Institutes and Bioscience organisations and Start-Ups.

Our research over the past decade has identified a set of skills and capabilities which, if developed, would assist individuals with a strong technical or scientific background to transition to a different mind and skill set and to equip them to lead successful teams.

We have trained over 900 researchers, scientists and technicians from the biotech, university and life sciences sectors in areas of strategic thinking, people management and innovation. Many past participants of the program have been internally promoted or have gone on to senior roles at other organisations.

LEADING & MANAGING THE PEOPLE SIDE OF HEALTH, TECHNOLOGY & MANUFACTURING TEAMS IN BIOSCIENCE

Leadership and Management Skills for Laboratory & Scientific Managers is a 2 day training program designed for high potential lab scientists, research leaders and technical managers to acquire leadership skills, network with their peers and prepare for more senior roles.

Facilitated by Adjunct Professor Larry Marlow, over the past decade this program has come to be regarded as the Gold Standard in Australasia for training technical and scientific leaders. Larry Marlow has a strong reputation in both academia and industry for his work facilitating organisational strategic thinking and planning as well as training a generation of new scientific leaders.

The program is conducted annually in Australian State capital cities and can also be run in-house. The program can also be coupled with individual executive coaching sessions by request.

Information about this leadership development program and the 2025 delivery schedule can be obtained from the website www.marlowhampshire. com.au or by contacting Adjunct Professor Larry Marlow at mh@marlowhampshire.com or 61(0)418128080.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

THE LAST WORD

At

The Kids Research Institute

Australia our purpose is to find solutions that improve the health and happiness of children and young people everywhere. While our vision is for all kids, it is our duty to ensure that those children who have the poorest outcomes receive proportionately more benefits from research.

FMAXIMISING THE POWER OF RESEARCH TO HELP KIDS REACH THEIR FULL POTENTIAL

or children with disability, the challenges are enormous and the solutions unquestionably complex. That’s why we are deeply committed to being part of the national and global research community working tirelessly to deliver insight, impact and better outcomes.

We are proud of our track record in disability-related research and advocacy, including our ground-breaking work confirming the link between low folate and neural tube defects and our subsequent advocacy for bread flour fortification. Introduced in 2009, this measure led to dramatic reductions in birth defects such as spina bifida, especially in Aboriginal communities. Likewise, we advocated with others for mandatory pregnancy warning labels on alcohol packaging; led landmark research identifying unprecedented levels of neurodevelopmental impairment in young people in detention; and were one of the first research institutions to adopt consumer consultation for cerebral palsy and rare diseases.

Lara, 3, took part in a world-first program at The Kids Research Institute Australia which supports babies who are showing early social and communication differences

While prevention is always the priority, many of our current programs of research in the disability space focus on generating evidence to inform better diagnosis, treatment and support. Our research is delivering real impact in areas such as Developmental Coordination Disorder (DCD), Rett syndrome and the development and release of Australia’s first national guidelines for autism diagnosis, early therapies and supports for autistic children.

We are particularly proud of our development of CliniKids as a clinical service for autistic children and their families, conducted with a research lens; our development and maintenance of internationally recognised intellectual disability and rare diseases databases; and of our work developing new measures to improve the quality of life for children with disability and their families. We know that it is only by engaging and listening to those with lived experience that we can really understand how we can best support the needs of children with disability and improve their lives.

Even though as a research community we have made enormous progress, there continue to be worrying trends. We join other child health experts in being concerned at the significant increase in the number of Australian children requiring learning support at school due to disability, with the latest figures from the Australian Curriculum, Assessment and Reporting Authority (ACARA) revealing that one in four students, or 24.2 per cent of all primary and high school enrolments, now need learning assistance – up from 22.5 per cent in 2022 and 18 per cent in 2015. ACARA’s data also reveal that last year, of the students requiring educational adjustment due to disability, more than 54 per cent had cognitive disabilities, a third had social-emotional disability, nearly 10 per cent had some form of physical disability, and 2.7 per cent required support due to a sensory disability.

Just as worrying, for some time now we have known that the mental and physical health of our children is at risk with increasing rates of anxiety, depression and obesity. Up to half of mental disorders have their onset by age 14, one in five kids still doesn’t finish school, one in six lives below the poverty line, and our teenagers are spending 30 per cent of their time while awake on screens. Our own research has shown children as young as three are consuming almost three hours of screen time every day.

When kids are struggling – when they cannot concentrate, when they cannot see or hear as well as other children, when they’re dealing with a chronic condition or disability or cannot move as easily as other children, when they are neurodivergent, when their family don’t have the resources to feed them in the morning, when their mental health is poor, when they’ve experienced trauma, or when they don’t have equitable access to healthcare or other support – it not only affects their ability to learn, but to develop and thrive.

One of our leading researchers in developing ways to better support children with disability in schools, Professor Andrew Whitehouse, was recently appointed to lead an

expert panel to review the Western Australian School Education Act to identify opportunities to strengthen access and inclusion for children with disability. This work will have national significance in finding new ways to support children, as well as those who are closest to them – parents and teachers.

Simultaneously, our Head of Child Disability research at The Kids, Professor Jenny Downs, is leading the paediatric node of the new National Centre of Excellence in Intellectual Disability Health, based at UNSW Sydney. This highly collaborative centre, run in partnership with people with intellectual disability, health and disability professionals, state health departments, services and regulatory authorities, academics and advocates, aims to ensure people with intellectual disability – an estimated 450,000 Australians – can get better access to quality healthcare which fits their needs.

These and other contributions from researchers across The Kids and elsewhere give me enormous hope that our research community – by working in partnership with clinicians, consumers, advocates, service providers and policymakers – will continue to deliver life-changing and lasting improvements to children with disabilities. The importance of research and evidence in this endeavour cannot be underestimated. Evidence provides the path towards our ‘north star’ of ensuring that all children reach their full potential.

Author: Professor Jonathan Carapetis AM is Executive Director of The Kids Research Institute Australia (formerly Telethon Kids Institute).

Professor Jonathan Carapetis AM is Executive Director of The Kids Research Institute Australia (formerly Telethon Kids Institute).

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL