Addressing Health Inequities for People with Intellectual Disabilities: A Personal and Professional Journey
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People with intellectual disabilities face significant health inequities, including a life expectancy that is, on average, 27 years shorter than those without such disabilities. ​ The rate of avoidable deaths among this population is double that of others. ​ These statistics are deeply personal … ​My daughter, Sarah, lived with Dravet Syndrome—a condition that brought severe intellectual disability, unstable epilepsy, communication challenges, scoliosis, and a crouched gait. ​ Tragically, Sarah passed away just two days before her 26th birthday at the end of 2019. ​ Her life was far too short, but her legacy continues to inspire my work. ​
As a Registered Nurse and Credentialled Diabetes Educator, I have witnessed firsthand how inadequately the healthcare system addresses the needs of people with intellectual and cognitive disabilities. ​ Caring for Sarah gave me invaluable insight into the challenges faced by individuals with cognitive impairments in accessing equitable healthcare. ​ Sarah taught me about the disability side of health, while my 42 years as a healthcare professional has taught me the clinical side. ​ Merging these two spheres of knowledge has empowered me to challenge, advocate, and inspire my colleagues to rethink their approach to caring for people with disabilities. ​
Today, as a Registered NDIS Provider, I work with individuals who face immense complexity in their daily lives. ​ Sarah’s legacy drives me to create solutions that simplify these challenges and build systems of support tailored to their unique needs. ​ Empathy, deep thinking, and observation are the cornerstones of my work, enabling me to innovate and deliver person-centered care. ​
Empathy enables health professionals to deeply understand the unique challenges and needs of people with intellectual disabilities. It enables us to sit with the person’s feelings and understand more intently as we ‘listen’ to their words, body language and behaviour. ​ By fostering empathy, health professionals can better observe, listen, and connect with people with a disability, allowing them to grasp the complexities of their lives and health conditions. ​ This understanding helps in creating person-centered solutions, tailored to the specific needs of each individual, ensuring they feel safe, supported, and respected within the healthcare system. ​
Empathy also drives innovation and proactive strategies to address health inequities and improve communication and education for this underserved population. Through collaboration with individuals, their support networks, healthcare professionals, government and non-government organisations, and industry leaders, I develop strategies that prioritise the needs of this underserved population. ​ My work is rooted in creating clear health education and communication strategies that make people with intellectual disabilities feel safe and supported within healthcare systems. ​
The Disability Royal Commission shed light on systemic failures in providing unbiased, quality, and safe healthcare to people with disabilities. ​ Heartbreaking stories from individuals and families, including mine, have underscored the urgent need for improved health professional education and strategies to ensure equitable care. This must include further developing the empathy of health professionals to put aside bias and self-protection and encourage connection using empathy in their clinical interactions with people with a disability. Gaining deeper insights into the verbal and non-verbal communication shared in empathetic care, assures truly person centred care … no matter to whom they are providing healthcare.
Remaining curious and motivated has been key for me in staying at the forefront of my field. ​ I continuously explore new ways to deliver effective diabetes care and education, using empathy.​ My work has been recognized through awards, published articles, and conference presentations, but my true measure of success lies in the lives I’ve touched, little moments of ‘getting it right’ for a person with complex needs and the systemic changes I’ve helped drive. ​
Sarah’s legacy lives on in the work I do every day. ​ Her life and challenges have inspired me to focus this later part of my career on addressing health inequities and advocating for a healthcare system that truly serves everyone. ​ Together, we can create a future where people with intellectual disabilities receive the quality care they deserve so they can spend more quality time with their families and those they love, from the years gained from improved health.