This year’s United Nations International Day of People with Disability theme celebrates the leadership shown by people with disability. We’re proud to honour this theme by highlighting the remarkable strength and leadership of parents and carers who live with disability while also raising children with disability.
Navigating complex systems and finding support can be challenging for any parent or carer. For those living with disability, these challenges can often feel magnified as systems seem to be rarely designed with their needs in mind. Despite these barriers, parents like Amy are taking the reins and leading the fight for inclusion—not just for themselves, but for their children and the wider community.
Amy is a proud mother to three daughters—Charlotte, Savannah, and River. Her home is a lively blend of love, laughter, and what she calls “organised chaos.” All four family members are participants in the National Disability Insurance Scheme (NDIS) under the Complex Support Needs Pathway. Amy lives with a range of chronic health conditions and disabilities, including type 1 diabetes (diagnosed at age two), three types of epilepsy, complex post-traumatic stress disorder (C-PTSD), agoraphobia, pathological demand avoidance (PDA) autism spectrum disorder (ASD), and ADHD, which were diagnosed later in life.
While these experiences have shaped their lives, Amy refuses to let them define her or her family. Instead, she approaches every challenge with optimism and determination, driven to create a better world for her family.
Amy’s journey as an advocate began with her involvement with Kiind. Sharing her story with Kiind gave her the chance to speak freely, without judgment, and helped her realise that her voice mattered.
Kiind made me feel like my perspective was valuable and worth hearing. That was a turning point—it started to build my confidence.
Since then, Amy’s advocacy has flourished. Her experiences with Kiind ignited a drive that led her to take on leadership roles within the disability sector. Today, she serves as a Board Director for the Australian Federation of Disability Organisations (AFDO) and as Vice President on the Board for the South West Autism Network (SWAN). Additionally, Amy actively contributes to two Systemic Advocacy Reference Groups, where she works to champion the rights and needs of individuals and carers with ASD.
Each new opportunity has strengthened Amy’s confidence and opened doors to even more possibilities.
For Amy, her love of music became another way to amplify her voice. She wrote A Kiind Hand, a heartfelt song capturing the empowerment and liberation she felt from sharing her story with Kiind. Amy channels her resilience through her lyrics, sending a message of hope to others navigating similar experiences.
Take a moment to listen to her song below:
Click here to listen to ‘A Kiind Hand’.
While Amy’s story is personal, she believes it’s not unique. The systemic issues her family faces are challenges many families have encountered for years. But Amy has never been one to sit back when others try to take control of her life. She is determined to be the one to make change happen.
I came into this world knowing I was here to change laws that no longer work. They need to change, and if someone’s going to do it, I’m happy to be that person,” she says. “I hope Kiind knows what they’ve unleashed. I’m definitely a force to be reckoned with now!
When it comes to making decisions about their own lives or their children’s lives, no one knows better than parents and carers themselves. Amy believes that decisions should be made by those who truly understand the full picture and can draw from their own lived experiences.
Amy’s perspective comes from personal moments of vulnerability—times when she was unconscious or unable to speak or move due to seizures. During these moments, others made decisions on her behalf, even when she knew they weren’t right. These experiences reinforced the importance of self-advocacy and surrounding yourself with people who deeply understand and respect your needs.
It’s crucial that the voices of those who can’t speak for themselves are heard and respected.
Through her advocacy and leadership, Amy and her family have made significant strides in the fight for equality and inclusion. While there’s still much to be done, Amy believes advocacy is key to creating change.
Those who have the privilege and platforms to instigate change must actively use their voices. Choosing silence or passive compliance essentially supports the continued violation of the human rights of people with disabilities. Decision-makers often depend on the quiet compliance of the majority to tip the scales of justice in their favour. Therefore, speaking out is vital to shift this balance and ensure the rights and dignity of people with disabilities are upheld.
For Amy, leadership isn’t about gaining power or control. It’s about embracing discomfort, knowing that not everyone will agree with you—and that’s okay. It’s about staying true to your core values, even when it’s difficult.
Amy’s advice to parents and carers like herself is simple yet powerful: embrace your mistakes, learn from them, and prioritise self-care every day.
For a long time, I thought that prioritising myself was selfish, but I realised that not doing it is actually the selfish thing. If I’m not regulated, I can’t help my children regulate. The best way to help them is to take care of myself too.
Not only today but every day, we proudly celebrate parents and carers like Amy, who lead with strength and resilience. Their leadership serves as a powerful reminder to never underestimate the impact of a parent or carer whose love and admiration for their children, themselves, and their community go beyond the status quo.
If you would like to shine a light on issues that stand in the way of your child’s progress, you’re welcome to share your experience with us.
Your experiences often mirror those of other families so why not turn your voice into a collective voice and support the call for change.
