Episodes

  • 🎧 From Isolation to Impact: Alexandra Fernandez’s Quest to Bring Her Twins Safely Home

    🎧 From Isolation to Impact: Alexandra Fernandez’s Quest to Bring Her Twins Safely Home
    Jul 17 2025
    In this powerful episode of Finding Common Ground with Heather & Steve, we sit down with Alexandra Fernandez, a devoted mother of 10-year-old twins with profound autism. Alexandra bravely shares what it’s like to care for children with such intensive needs—and what happens when the right supports simply don’t exist.After speaking up at OPWDD’s first Listening Tour session in Central New York, Alexandra's heartfelt testimony caught the attention of Commissioner Willow Baer. The result? Real action—and real change. Her twins will soon be coming home! While it’s a dream come true, Alexandra knows that the challenges that existed before their hospital stay haven’t magically disappeared. More work is needed to ensure that this time is different—that the family is truly wrapped in the supports and safety nets they need to make this a lasting, sustainable solution.This conversation reminds us that advocacy works, that one voice can ripple outward, and that sometimes the win we desperately need is closer than we think. A few highlights:
    • What makes profound autism different—and why the system isn’t built to support it
    • Alexandra’s practical solutions: from in-home potty training programs to behavioral crisis lines
    • A behind-the-scenes look at the Center for Discovery’s new specialty hospital
    "To have the opportunity to tell our story is rare—and when you’re caring for someone with profound autism, the isolation can be overwhelming. The level of care required, the services that are missing, the boundaries we’re not allowed to cross—these are things most people don’t see, but they define our everyday." – AlexandraIf you've ever wondered whether your voice matters, this episode proves it does. This podcast is a personal mission. We’re not funded by big sponsors—we grow through shares, likes, comments, and subscriptions. Help us spread stories that make a difference:
    • Subscribe on your favorite podcast platform
    • Like, comment, and follow us on YouTube
    • Share this episode with someone who needs a little hope today


    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    1 hr and 5 mins
  • From Parent to Policy Shaper: Nick Cappelletti’s Vision for a Better IDD System

    From Parent to Policy Shaper: Nick Cappelletti’s Vision for a Better IDD System
    Jul 10 2025
    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.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    55 mins
  • 🎙️ Medicaid Musical Chairs: What Happens When the Music Stops?

    🎙️ Medicaid Musical Chairs: What Happens When the Music Stops?
    Jun 19 2025
    Guest: Karen Korotzer, CEO of ARC Oneida-Lewis

    At Finding Common Ground, CDPAP was a spark—but not the full story. That crisis reminded us how fragile our systems really are. What brought people to our platform wasn’t just one bad policy, it was the toxic mindset behind it, and the fear that mindset would spread. Families needed a safe space to process how it was affecting them. Together, we created that space—a community where people uplift one another, even if their views don’t always align, because we know how to find our common ground and honor where our values overlap.

    We are carrying that same energy, strategy, and determination into every system that touches our lives. In this episode, we pull back the curtain on Medicaid’s shifting foundation and what happens when the music stops for those who rely on it most.

    Special guest Karen Korotzer, CEO of ARC Oneida-Lewis, joins Heather and Steve for a candid, eye-opening conversation about how disability services have survived—not because of strong systems, but often in spite of them. With federal Medicaid reforms looming and New York’s long history of budget manipulation, this episode breaks down what’s really happening behind the scenes and why families should never be gaslit into silence.

    We asked families: “What keeps you up at night?” The answer echoed loudly: caregivers. Whether it’s a professional who chose this work or an unpaid family member doing it out of love, caregivers are undervalued, unsupported, and trapped in a system that labels them essential while treating them as expendable. It’s time we call caregiving what it is: a profession that deserves Department of Labor recognition, an occupational code, and real protections that reflect real respect for this honorable career.

    Karen doesn’t just describe the problem—she shares real examples of what’s working, what’s broken, and what comes next:
    • Why Medicaid “reform” always sounds better on paper
    • How the disability sector survives on budget scraps and why that must change
    • What really keeps DSPs in the field (hint: it’s not just the paycheck)
    • Why exhausted parents often make the most powerful advocates
    • What you can do right now to shape what happens next
    If you’ve ever found out about a major policy shift after it was already decided—without your input—this episode is for you.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    44 mins
  • FCG ON LOCATION - Walk for Autism Acceptance

    FCG ON LOCATION - Walk for Autism Acceptance
    May 15 2025
    Join hosts Heather and Steve as they take Finding Common Ground on the road to Utica, New York for the annual Autism Walk. Despite drizzly skies, the energy was electric—over 50 resource tables, $150,000 raised, and hundreds of families, self‑advocates, service providers, and local leaders coming together in solidarity.In this special on‑location episode you’ll hear:
    • Personal Journeys: A conversation with an author who has turned his lived experience with autism into a series of children's books.
    • Advocacy in Action: Diane Tanner of Healthy Minds, Healthy Kids on mental‑health funding and Assemblyman Miller’s vision for policy change.
    • Community Impact: Dr. Kelberman reflects on 20 years of grassroots growth and future plans.
    • Self‑Advocate Voices: Christian and Veronica share how they’re forging independence through employment and peer‑led initiatives.
    • Local Innovation: Highlights from Books, Art & More and LifePlan/ACA on creative supports and care management.
    Whether you’re an ally, a family member, or simply curious, this episode captures the resilience and unity of the autism community—and shows why our work continues year‑round. Tune in to discover inspiring stories, practical resources, and how you can help keep the momentum going. Subscribe now and be part of the conversation!

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    20 mins
  • From Tragedy to Technology – Protecting Vulnerable Loved Ones with Guardian Watch AI

    From Tragedy to Technology – Protecting Vulnerable Loved Ones with Guardian Watch AI
    May 7 2025
    Today, as the perpetrator (Garnet Collins) is sentenced for his crimes, we release this episode to stand in solidarity with Anil and Shalini Babbar’s family and amplify their fight for justice and protection. Their journey from heartbreak to hope explains the development of Guardian Watch AI and how technology—combined with community involvement—can not only hold perpetrators accountable but also prevent future abuse.Impactful Quotes from the ParentsShalini Babbar: "To get a call from a strange number and shortly thereafter receive a video of my son's physical and sexual abuse has been by far the most devastating thing I've ever experienced. My son screaming in pain, howling in agony, saying he wants to call his mommy. It echoes in my head all the time. A selfless whistleblower staff member could no longer tolerate the abuse he was witnessing and felt compelled to alert us. We will forever be grateful to him. This man took matters into his own hands and if not for his courage, my son would still be a victim."Anil Babbar: Listen as we put to rest the tired argument that "privacy rights" are why cameras should not be permitted in group homes. The truth is, cameras are already in place in many settings to protect us. Those who cannot testify to the abuse they’ve endured deserve the same safeguards as everyone else, not less. "We need to create a grassroots campaign to ensure cameras are installed in these facilities. It's the only way to protect our most vulnerable."The Shocking Reality of AbuseThe prevalence of abuse in care facilities is staggering:The Justice Center investigates 90,000+ cases of potential abuse or neglect each year in the state of New York.80% of abuse goes unreported.Disabled children are 5 times more likely to be sexually assaulted.4 out of 5 disabled females have experienced sexual violence.Many vulnerable victims cannot testify, making convictions difficult without video evidence.Taxpayer money funds facilities where abuse goes unchecked for decades.The System Needs to Change: In other care sectors, like nursing homes, facilities are penalized for abuse—through fines and adjustments to reimbursement rates when patterns of abuse are identified. Why doesn’t this happen in residential facilities for people with disabilities? Medicaid dollars should not fund abuse. If facilities were required to repay Medicaid for timeframes when abuse occurred, it would create a powerful incentive to improve safety protocols and oversight.Learn how this wasn't the first time the Anderson Autism Center has faced scrutiny. Twenty years ago, at the same residential option for children under 21, unchecked abuse resulted in the death of Jonathan Carey. How are these tragedies still happening decades later? This podcast digs into why we need systemic change to protect our loved ones.A Call to Action: Be Part of the SolutionParents, caregivers, and advocates can actively participate in this mission. By submitting video footage of behaviors—like stimming or common reactions—families can help train Guardian Watch AI to distinguish between typical movements and potential signs of abuse. Your contributions will help protect countless vulnerable individuals from harm.This isn’t just about detecting abuse but proactively creating an ecosystem that prevents it. Imagine an AI system that detects elevated heart rates or distress signals, allowing for early intervention, alerting staff, and calling for backup. It’s not just a documentation tool—it’s a safety net that supports the staff as much as the disability community. In cases where staff are falsely accused, video footage can serve as a safeguard, providing context and proof of proper conduct.This platform has the potential to protect everyone involved. Many staff members feel undervalued and disrespected, which makes it harder for them to step forward when they witness travesties. Guardian Watch AI can help document events accurately, providing clarity in ambiguous situations and ensuring that the truth prevails. Law enforcement and The Justice Center have acknowledged that having video evidence would be extremely helpful in clarifying cases where witnesses have difficulty communicating and/or fear retaliation.Visit the official website to learn more and get involved: https://app.guardianwatch.ai/Learn More: For more about the case and the family’s journey, watch the news coverage here: https://www.fox5ny.com/news/autism-facility-faces-abuse-allegations-after-shocking-video-surfacesThis episode is more than just a story—it’s a call to action. Be part of a movement to create safer environments for our most vulnerable. Listen to this powerful episode, hear Anil and Shalini’s story, and find out how you can join the effort to protect those who cannot protect ...
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    1 hr and 1 min
  • Backstage Pass: Nearly One Year of Unscripted Advocacy

    Backstage Pass: Nearly One Year of Unscripted Advocacy
    Apr 30 2025
    Pull up a virtual backstage chair—this episode is just Heather & Steve, nearly one year in the making. No guests, no scripts, just two advocates who refuse to let the conversation end at “cut.” We revisit our most powerful moments, unpack the “quiet parts” that echo long after the camera stops rolling, and give you the inside scoop on what’s coming next. A heartfelt thank you to everyone for rallying around CDPAP topics lately. We know this platform has been CDPAP-heavy—and we appreciate your understanding. Remember, every issue matters here: home care, federal funding, community innovations, and more.In this free-wheeling episode, you’ll:
    • Relive Standout Moments: Revisit some of the debates that have shaped Finding Common Ground and hear why they still matter: “On his 21st birthday, every single program stops. There is no fallback, no transition to adulthood for these same kinds of programs that he still needs. It took quite an undertaking trying to get him somewhere. At the very last minute we got the miracle, and he moved in yesterday.”
    • Explore the Camera Conundrum: Why aren’t group homes outfitted with the same camera technology we see in every other sector? “If you’re in a hospital, there are cameras. If you’re in a school, on a bus, if you’re in a store, if you’re in a nursing home, we even use cameras to keep our cars safe. Why not our most vulnerable?” We dismantle the tired privacy arguments and sketch out how we could make it work for everyone’s safety.
    • Meet Our Newest Allies: Learn how a horrifying abuse case at the Anderson Autism Center forged Heather’s bond with Shalini (the boy’s mother) and led to a collaboration with his Dad, Anil. Their pioneering AI platform will not only document and expose abuse, it aims to prevent it before it happens. Stay tuned for a deep-dive episode on how you can help train this technology, so it’s designed with your family’s needs in mind.
    • Follow Steve’s Foster-to-Family Mission: After welcoming nearly 200 children into their home, Steve and his wife are finalizing their last adoptions—and you’ll be astonished by the stories they’ll share once their family is complete. Buckle up for an upcoming mini-series of eye-opening revelations and groundbreaking solutions they couldn't discuss until now.
    Why Listen to this Episode?
    • Respectful Dialogue: We tackle the issues blowing up other platforms. Just last month, nearly 80,000 people engaged with our RFK Jr. autism post with only three comments that "crossed the line" with a disrespectful tone. Which shows us what’s possible when we welcome raw truths and diverse perspectives.
    • Common Ground = Real Change: Every voice matters. By sharing honest stories from every side, we pave the way to solutions that last long after we are gone.
    • Your Voice Matters: Tune in, then dive into the discussion. Tell us which topics you want us to explore next—home care, housing, policy, or something entirely new.
    Listen now on your favorite podcast app or watch on YouTube. The backstage door is open—come join the conversation that keeps going long after the cameras are off.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    36 mins
  • The Sh*t You’re Not Supposed to Talk About with Jackie Ceonzo

    The Sh*t You’re Not Supposed to Talk About with Jackie Ceonzo
    Apr 23 2025
    This is the episode where we say the quiet parts out loud.Heather and Steve sit down with powerhouse advocate Jackie Ceonzo, founder of SNACK and co-founder of Families for Disability Rights, for a raw, fearless conversation about the side of parenting and disability advocacy that rarely gets airtime—but absolutely needs to.Jackie has been featured on Good Morning America, built inclusive programs from scratch, and helped launch the Coalition for Self-Direction to protect families navigating complex needs, broken systems, and constant burnout. But she didn’t get there by playing it safe. Like so many of us, she started out overwhelmed, unseen, and determined to build what her child needed when no one else would.

    “If we’re these silent soldiers, no one’s going to help us. And we’re going to drop dead if we keep trying to do this by ourselves.” – Jackie Ceonzo

    In this episode, we cover the sh*t you’re not supposed to talk about—literally and figuratively. Topics too often filtered out of polite conversation or edited for public comfort, including:
    • Embarrassing (but funny) moments in public
    • Fecal smearing and lifelong toileting challenges
    • Aggression, broken doors, and the emotional toll of staying safe
    • Public meltdowns and the joy of being judged by strangers in the frozen food aisle
    • Puberty, sexuality, and trying to explain hormones to someone who still presents as child-like
    • Caregiver isolation, burnout, and the “dark thoughts” no one says out loud (like Googling group homes at 3AM—or fantasizing about five minutes of silence in a locked bathroom)
    Jackie shares her journey raising a son with profound autism, creating SNACK so both of her sons could grow up side-by-side, and realizing that when systems fall short, parents have to build what’s missing. Her message is blunt, empowering, and refreshingly unapologetic:

    “Common sense has been out the window for way too long… So that’s why I said, you know what? I’m gonna do my own thing. No one is coming to save us. So we built it ourselves.”

    This episode will challenge you, move you, and make you feel seen. Whether you’re a caregiver, advocate, sibling, or policymaker, you’ll leave with a deeper understanding of what families are facing and why silence is no longer an option.We’re not here to sugarcoat. We’re here to speak the truth.Tune in. Share it. And remember: No one is coming to save us. So let's build the future we need, together.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    52 mins
  • Eamonn Scanlon - From Local Action to Statewide Impact for Children's Rights

    Eamonn Scanlon - From Local Action to Statewide Impact for Children's Rights
    Apr 16 2025
    Don’t expect transparency. That’s what you have to dig for.” – Eamonn Scanlon, The Children's Agenda
    What happens when over 140,000 students are suspended from school each year in New York? When families can’t get basic developmental services until it’s too late? When the people in power act like the system is working just fine? This week on Finding Common Ground, Heather and Steve are joined by Eamonn Scanlon from The Children’s Agenda to expose the cracks in the foundation of our education and care systems—and what we can do to fix them.

    🎧 In this episode:
    • Real Power: Learn how building coalitions and reshaping narratives are just as critical as passing legislation.

    • Suspensions That Solve Nothing: Hear why blanket school suspensions don’t change behavior—and what does.

    • A Broken Early Intervention System: NY is dead last in timely early intervention services. Eamonn breaks down how that failure starts before kids even enter the school system.

    • From Foster Care to the Classroom: Steve shares his personal experience with therapeutic foster care—and how trauma-informed systems are still more buzzword than reality.

    • No Support? No Success. Heather explains how gaps in services impact families like hers—where Early Intervention delays and suspension risks aren’t just stats—they’re real life.


    💬 Must-Hear Quotes:
    • “Suspensions don’t work. We need discipline that actually changes behavior.” — Eamonn Scanlon [24:56]

    • “The early intervention system? It’s disconnected. And that’s a massive problem.” — Eamonn Scanlon [32:37]

    • “If we had 100,000 people in Albany tomorrow? All of this melts away.” — Eamonn Scanlon [43:09]

    • “If they admit the problem, they have to fix the problem.” — Eamonn Scanlon [13:26]

    Why You Need to Listen: If you care about educational equity, disability rights, or just making systems actually work for kids and families, this episode is a rallying cry.

    We’re not here to complain—we’re here to organize, act, and make sure no family is left to navigate broken systems alone.
    👉 Tune in now and learn how you can become part of the movement: Kids Can’t Wait and Solutions Not Suspensions


    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    51 mins