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  • Larissa Martin: Why CDPAP Matters & How to Speak Up Before Aug 18th

    Larissa Martin: Why CDPAP Matters & How to Speak Up Before Aug 18th
    2025/08/12
    In this urgent and deeply personal episode of Finding Common Ground, Heather and Steve welcome Larissa Martin — a self-advocate who has relied on New York’s Consumer Directed Personal Assistance Program (CDPAP) for 17 years. Larissa’s voice is raw and real as she shares why this program has been her lifeline, how the rushed transition to Public Partnerships LLC (PPL) has shaken the system, and why now is the moment to speak up. Over 70,000 people have already been forced into more expensive agency-based care. Thousands more have lost their caregivers altogether — often because aides quit after wrong, delayed, or missing paychecks. This isn’t just inconvenient; it’s led to declining health, hospitalizations, forced institutionalization, and, tragically, preventable deaths. One of CDPAP’s greatest strengths is the ability to hire people we trust — not strangers an agency assigns. Larissa puts it simply: “Even if we don’t know a caregiver well at first, many become like family over time. That’s why it was so painful for consumers to see New York hire a company with a record of payroll violations. Like Senator Rivera has said, the harm is no longer hypothetical. PPL is repeating their pattern. They are driving down enrollment by forcing our caregivers to quit.” One of Larissa's own caregivers, already stretched thin with five kids, now worries every payday if she’ll be paid correctly. This constant stress is unnecessary, inhumane, and dangerous. In just 20 weeks, PPL has caused more chaos, potential fraud, and harm than our previous Fiscal Intermediaries did in the decades since CDPAP began — which is why CMS, the DOJ, and the FBI are now involved. But where is our own Department of Labor? Felony-level wage theft on this scale demands their attention, yet there has been no public acknowledgment that one of the largest workforces in our state is being exploited in plain sight. Every day they stay silent, more families lose the care they depend on, and more workers pay the price for a crisis they didn’t create. The DOH Commissioner promised the transition would make it easier for caregivers to get paid and save the state money. In reality, people are losing care, being pushed into costlier options, and facing devastating consequences. Anger is justified — but Larissa challenges all of us to go further: share our stories, put the harm on record, and be part of the solution. If you’ve been affected by the CDPAP transition, you have until Monday, August 18th to submit written testimony. It doesn’t have to be long or perfect — just honest. Your voice matters. Without it, change may never come. How to Submit Testimony:
    1. Write about your personal experience with CDPAP and the impact of PPL’s takeover.
    2. Share specifics: payment delays, insurance issues, caregiver shortages, or disruptions.
    3. Keep it respectful but real — your lived experience is powerful.
    4. Email your testimony to steen@nysenate.gov. If you choose to be anonymous, sign as “Jane Doe.”
    Whether you’re a CDPAP consumer, caregiver, family member, or concerned New Yorker, your testimony matters to the 700,000 people who were connected to CDPAP before PPL’s monopoly. When someone told Larissa she should move to another state that would treat her better, she replied: “I want to stay and fight not just for me, but for other people in the program that don’t have that option to leave.” Listen now to hear Larissa’s powerful story — and learn how you can make yours heard before the deadline.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    39 分
  • 🎙️ Craig & Sally Benoit: "Fostering" Love, Limits, and System Reform

    🎙️ Craig & Sally Benoit: "Fostering" Love, Limits, and System Reform
    2025/08/07
    On this episode of Finding Common Ground with Heather and Steve, we talk with Craig and Sally Benoit, a remarkable couple who’ve fostered over 50 children and adopted 13—each with their own story, needs, and quirks. From the first few minutes, you’ll feel their blend of grit and humor.
    Whether it’s juggling allergy lists, remembering who hates peas this week, or managing bedtime with over a dozen different routines, they’ve seen it all. Craig joked that just loading the dishwasher feels like a military operation—because in their house, even the spoons have backstories. It’s funny, it’s chaotic, and it’s completely real. A peek into the kind of parenting that will make you laugh and nod in recognition, whether you’ve raised one kid or twenty.
    This episode is full of laugh-out-loud funny moments, balanced with some deeply moving ones too. The Benoits speak candidly about navigating the foster care and disability systems, and what it really takes to build a stable, loving home when the systems around you are broken. From setting boundaries to learning how to advocate for special education services and adult supports, their insights will hit home for anyone trying to raise children in complex circumstances.
    This episode isn't just about their extraordinary family—it’s about what happens when everyday people refuse to give up on kids society often overlooks. The Benoits didn’t wait for a perfect system. They did what they could with what they had, and they’re not done yet.
    One moment that cuts through the noise: When Craig and Sally agreed to meet a boy who had once lived with Steve, they expected the "usual pitch" that minimized the difficulties and were stunned and grateful when they received honesty instead. Steve placed a bag of torn, chewed-up shirts on the table. "He chews every collar," he said. Not dramatic. Just real. A behavior that others might’ve hidden to make the placement happen. But Steve didn’t hide anything and the Benoits didn’t run.
    “We aren’t afraid of hard things,” Sally said. She explained that knowing where the pain points are helps them figure out which children will thrive in their home and which may need a different path. They lovingly joke that their full house isn’t for everyone, but what makes this conversation unforgettable is that nothing was sugar coated. They let us backstage into the chaos, the love, and the realities most people never see.
    Fostering isn’t about perfection—it’s about showing up, even when it’s hard. This episode delivers honest insights, unexpected laughter, and maybe... the push you need to take that first step.


    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    52 分
  • 🎧 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
    2025/07/17
    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 時間 5 分
  • 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
    2025/07/10
    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 分
  • 🎙️ Medicaid Musical Chairs: What Happens When the Music Stops?

    🎙️ Medicaid Musical Chairs: What Happens When the Music Stops?
    2025/06/19
    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 分
  • FCG ON LOCATION - Walk for Autism Acceptance

    FCG ON LOCATION - Walk for Autism Acceptance
    2025/05/15
    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 分
  • From Tragedy to Technology – Protecting Vulnerable Loved Ones with Guardian Watch AI

    From Tragedy to Technology – Protecting Vulnerable Loved Ones with Guardian Watch AI
    2025/05/07
    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 時間 1 分
  • Backstage Pass: Nearly One Year of Unscripted Advocacy

    Backstage Pass: Nearly One Year of Unscripted Advocacy
    2025/04/30
    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 分