Future planning: who knows your child like you do?
By Monique Power, co-founder and CEO, RippleAbility
We don’t like to think about it, but most parents of a child with disability do: who will know them the way I do, once I’m not here to hold it all together? Monique Power asks what it takes to build a future that doesn’t rest on one person alone.
Every carer stitches together a quilt. Not with fabric and cotton, but with moments, routines and years of accumulated and wholly unique knowledge.
You know the favourite toy. A bedtime routine that works. The support worker who can intuit needs. Which reliable specialist always calls back. What is guaranteed to get a laugh. How their eyes communicate when they are sick, scared or hungry. Each discreet micro expression you’ve devotedly and diligently learnt to interpret; a secret language only you and your child share, like a warm and worn blanket built for two.
On their own, these pieces might seem ordinary to others, even unimportant. But you know that with time, they become something extraordinary. They create the fabric of your child’s life.
Ask parents of children with disability what keeps them awake at night and, eventually, many arrive at the same answer.
“What happens when I’m no longer able to do this? Who will love them the way I do, know them like I do, and support them how I do?”
It’s a question that is quietly carried by families across Australia. It’s thought about often, spoken about rarely, and even less frequently acted on early.
Not because parents don’t care. Because they’re busy holding the threads together and stitching the fabric of the day-to-day. Between hospital appointments, therapy sessions, school meetings, funding reviews and the endless logistics of daily life, there is rarely space to think beyond the next hurdle, let alone imagine a future where someone else might need to step into your role.
And perhaps that’s the problem.
We’ve come to think of care succession as something that happens at the end of the journey. In reality, it’s something that should be woven through it.
Earlier this year, the Disability Assembly of WA convened over 100 families, siblings, providers and members of government to explore one of the most important, and least talked about, issues facing people with disability: care succession. While the conversations took place in Western Australia, the message resonated far beyond state borders. Carers described carrying the responsibility of coordinating every aspect of their child’s life whilst quietly wondering what would happen when they no longer could.
It’s an important reminder that succession isn’t simply about who provides care. It’s about who holds the knowledge.
Who else knows what matters to your child?
Who understands their communication, their routines, their fears and the things that bring them joy?
Who could advocate with confidence because they’ve been equipped long before a crisis arrives?
For many families, succession planning is imagined as legal paperwork to complete one day; wills, guardianship arrangements, a letter of wishes or financial planning. Of course, these conversations and commitments matter, and there is no better time than the present to make a start (if you have the resources to do so). But they’re only one piece of a much bigger quilt.
Care succession also happens in everyday moments. It’s introducing another trusted adult to appointments. Writing down the little things only you know (in a letter of wishes you update over time). Helping grandparents, friends or support workers understand not just the supports your child needs, but who they are as a person. Creating circles of support. It’s about finding opportunities for knowledge to be shared rather than carried alone.
The Summit also highlighted the importance of building intentional networks around people with disability, rather than assuming responsibility will naturally fall to one ageing parent, or eventually, to one sibling. Strong futures for everyone are built and sustained through relationships, shared knowledge and a true belonging in community. This is an organic- but highly intentional- process.
Perhaps that’s where we need to shift the conversation: From asking, “Who will look after my child?”…To asking, “Who is helping me hold the threads today and be likely to help me in all the ‘tomorrows’ to come?”
Because succession planning isn’t about replacing a parent.
No one ever could.
It’s about making sure the quilt you’ve spent years painstakingly and lovingly stitching isn’t held together by a single pair of hands, that could unravel in an instant.
Every new relationship, every shared story and every trusted person who comes to know your child offers an opportunity for another thread to the security blanket. Over time, that quilt becomes bigger and stronger. When it is built from the hands of many, they help to hold it when you are gone. They become the community that already knows how to lovingly wrap around your child when they need that security blanket the most.
And perhaps that’s the greatest gift we can leave our children.
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: [email protected] | rippleability.org
