Can the System Catch Up Before Parent Shot Clocks Run Out?

Families are often expected to hold everything together, yet too often they are treated like outsiders instead of experts. In this episode of Finding Common Ground, Steve sits down with OPWDD Commissioner Willow Baer for an honest conversation about what happens when families are carrying modern challenges inside a service system still shaped by outdated rules.

One of the most powerful moments in the conversation comes when Willow reflects on the role families have always played in driving change:
“Families are the largest unpaid workforce in the disability service system.”

Steve presses on the urgency many parents feel every day, asking the question that sits in the back of so many families’ minds:
“What happens to our kids when we’re not around anymore?”

Together they explore the tension families face every day. Housing uncertainty, healthcare access, dual diagnoses, and the challenge of building flexible supports in a system that was never designed for today’s level of need.

At the center of the conversation is a bigger truth. Families are already doing the work. The real question is whether systems can evolve quickly enough to meet them where they are.

If you have ever felt like families are carrying the system while waiting for it to evolve, this episode will resonate.


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Recorded at ROC Vox Recording & Production Studios in Rochester, NY. Learn more at rocvox.com.