From Parent to Policy Shaper: Nick Cappelletti’s Vision for a Better IDD System

What happens when someone who lives the challenges of the IDD system also leads efforts to change it? You get a conversation like this.In this powerful episode, Heather and Steve sit down with Nick Cappelletti, CEO of Life Plan and ACA—two organizations serving over 47,000 families across New York State.

But Nick isn’t just an executive—he’s a dad who gets it. His personal connection to disability services brings a rare and refreshing blend of empathy, insight, and urgency to the table.Together, we explore the shift from Medicaid Service Coordination to Care Coordination Organizations (CCOs), the growing importance of integrated healthcare, and how the Whole Person Supports Coalition is reimagining what care could and should look like.

Nick doesn’t shy away from the tough stuff—funding inequities, staffing struggles, and overly rigid regulations—but he also leaves us with a sense of possibility and purpose. Quote Worth Sharing:

“If a child with autism can’t find a psychiatrist, a behavioralist, or even just basic health care—then no amount of IDD services will matter. That person won't fully benefit unless we treat the whole person.” — Nick Cappelletti

Another Mic-Drop Moment:“We have to ask: Are we really spending our money wisely? Or is there a better way to allocate resources, assess need, and give people more options, more choices?”If you care about improving systems for people with disabilities—or if you just want to hear from a leader who actually listens—this episode is for you. Tune in for:

• The backstory of how care coordination evolved in NY
• How pandemic-era disruptions still ripple through the system
• Why Nick believes regulation must balance risk with quality of life
• The inside scoop on what the Whole Person Supports Coalition is working toward
• A heartfelt discussion on parenting, partnerships, and the path forward

This one’s equal parts policy deep-dive and heart-centered advocacy. We left inspired—and you will too.

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