Navigating the river: your child’s rights in healthcare
Navigating the healthcare system for a child with disabilities can feel like battling against a current of bureaucracy and red tape, writes Monique Power.
Caring for your child with disability or medical complexities can feel like an unpredictable journey. Somedays, everything flows smoothly. Other times, you’re fighting against the current, trying to secure the care and support they need. Through all of this, your child’s fundamental rights should act as clear markers, guiding you toward the dignity, care, and respect they deserve – these are outlined in a document called The Charter on the Rights of Children and Young People in Healthcare Services in Australia.
At the heart of this journey is what’s best for your child – the steady current that should direct every healthcare decision. You might find yourself up against red tape, delays, and frustrating obstacles, but the focus should always be on what benefits your child most, not what’s easiest for the system.
Your child has the right to be heard. Their thoughts, emotions, and preferences matter, even if they don’t communicate in typical ways. It’s crucial that healthcare professionals listen, making sure your child’s voice shapes their care plan rather than being an afterthought.
Every child deserves access to the highest standard of healthcare. You shouldn’t have to battle through a maze of barriers just to get the medical support your child needs. Timely, appropriate, and specialised care should be a given,not a fight.
Your child is more than a diagnosis. They have a unique personality, dreams, and relationships that shape who they are. Their care should reflect that, respecting your family’s values, culture, and beliefs instead of treating them as just another medical case.
As a parent or carer, you are the raft keeping your child afloat. You know them better than anyone, and your insight is invaluable. Healthcare providers should recognise your expertise and work alongside you, not against you.
Information is your map. You deserve clear, accessible guidance on your child’s healthcare – free from medical jargon and confusion. Whether through simple language, visuals, interpreters, or alternative communication methods, you should never be left in the dark about what’s happening or what comes next.
As your child grows, they should have more say in their care. Just like learning to paddle their own boat, they need space to make choices and take on responsibilities. Encouraging their independence helps prepare them for adulthood and ensures that they aren’t left struggling when the time comes to transition to adult healthcare. Your child’s safety should never be in question. They have the right to be protected from harm, neglect, and mistreatment in every healthcare setting. Strong safeguards should be in place to ensure they are treated with respect and dignity, always.
Beyond medical treatments, your child deserves a life filled with joy, learning, and connection. Healthcare settings should support play, education, and personal expression because childhood isn’t just about managing conditions – it’s about living.
The shift from paediatric to adult healthcare can feel daunting. Without proper planning, it’s easy to feel like you’re being thrown into uncharted waters. This transition should be handled carefully, giving your child the tools they need to take control of their own health when the time comes.
As a parent or carer, you are your child’s most powerful advocate. Healthcare shouldn’t feel like an upstream battle – it should be a system that works with you, not against you. By knowing your rights and standing firm, you can push for asystem that prioritises dignity, respect, and accessibility, ensuring your child gets the care they deserve.
If this journey ever feels overwhelming, remember – you don’t have to do it alone. Speak up, connect with advocacy groups, and demand better policies. Learn about hospital procedures, escalation processes, and patient rights so you can navigate the system with confidence. You’re not just holding on for the ride – you’re steering the course, making sure your child gets the best possible future.
By Monique Power. RippleAbility is a paediatric specific disability provider, helping families navigate complex systems of support and build their capacity to advocate for appropriate supports and services for their child. [email protected] rippleability.org
