Assisted Decision Making and Future Planning
Families are the experts. We're the ones providing 24/7 care, 365 days a year. We're the ones navigating systems, learning legislation, and quietly shouldering the lion's share of support - often because there's no other choice.
Yet that expertise is rarely acknowledged. And when it comes to planning for the future, families are often left to figure it out alone.
At the recent Paving Our Path Together event with Inclusion Ireland and The Inclusive Living Network, what really stayed with me were the conversations - about decision-making, future planning, wills, and trusts. These are such important topics for families like mine, but they're also the ones that can make your head spin.
I'm not a legislator or a lawyer - just a parent trying to do the right thing by my adult daughter. I want to make good, informed choices, but the information can be hard to find and even harder to understand.
And here's what often gets missed: well-intentioned professionals tend to consider the person in isolation, rather than as part of a wider support system - not always seeing that families are the foundation of care. We're there when services aren't. We're the continuity. We're the ones who know what works and what doesn't.
That knowledge should be valued, and never dismissed.
The Assisted Decision-Making (Capacity) Act 2015 has changed how we think about capacity and rights - it's about supporting people to make their own decisions, and presuming capacity. That principle is so important. But as I listened to families' stories, I couldn't help but notice how uneven the experience still is when trying to put that into practice. My sense is that when it comes to applying the law - presuming capacity - systems, services and organisations have not actually changed how they think about capacity.
Later in the day, we turned to future planning - that big question every parent quietly carries: what happens to them if something happens to me?
The advice and experiences shared were eye-opening. It struck me that, even with the best intentions, different systems don't always seem to fit together. The language and requirements we face feel at odds with the values of inclusion, choice, and autonomy that we're all working towards.
And yet, what I loved most about the day was the spirit in the room. No one came with a sense of defeat - only determination, honesty, and courage. Families helping families. People sharing what's worked and what hasn't. As one woman said, simply:
"We are the experts."
That sense of shared wisdom is powerful. It reminded me that change doesn't just happen in legislation - it happens in conversations like these, and in the courage of families who keep showing up and paving the path forward together.
It's time that family roles are acknowledged and respected for the quiet work they do. Not as "carers" separate from the person - but as the foundation of care, the experts on what's needed, and the people making self-directed support actually work.
Thanks to Inclusion Ireland and Inclusive Living Network for creating space and a forum for these conversations to get started.
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