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  • Changing Healthcare through Lived Wisdom with Dr. Mai Pham
    2024/10/23
    In this episode, we sit down with Dr. Mai Pham, CEO and President of IEC, as she shares her personal and professional journey in transforming a healthcare system that often leaves people with disabilities behind. Despite years of medical experience, it wasn’t until her own child was diagnosed that Dr. Pham faced the frustrations families experience navigating a broken system. If she struggled, what about those without her inside knowledge?
    Dr. Pham takes us behind the scenes of IEC's mission to reshape healthcare by leveraging lived experiences. From creating an affordable app that helps doctors better understand patients to encouraging systemic reforms like Delta Dental’s new billing codes and the Heads Up Act, which seeks to define the I/DD population as medically underserved, IEC's approach is groundbreaking.Dr. Pham believes real change starts locally—proving concepts in familiar systems before scaling them nationwide. And sometimes, as she puts it, “You don’t always want to announce the revolution; you want it to sneak up on the powers that be.” IEC focuses on trialing solutions, refining them with data to ensure they resonate with the medical field. Tune in to hear how this quiet revolution is reshaping healthcare, empowering families across the country, and giving self-advocates the power to lead change. An inspiring, practical conversation you won’t want to miss!

    Learn more about IEC: https://www.ie-care.org/our-approach/This podcast is completely grassroots with no big-name sponsors dictating our content. We’re investing in this because we believe that unfiltered conversations with change-makers like Dr. Pham can move the needle on issues that matter to families like ours. Please support us by liking, commenting, and sharing this episode on YouTube or your favorite podcast platform.

    Subscribe to our YouTube Channel (it's free)
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    For just $2/month, join our Supporters Club and help cover studio costs and keep this podcast going!

    Those helping us get this off the ground will get access to exclusive content and discounts in our soon-to-launch merch store. We prefer to keep this “amongst friends” and create a podcast with purpose, by families, for families. Your support means everything!



    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    52 分
  • From Darkness to Light: Overcoming Addiction and Finding Hope
    2024/10/09
    Have you ever watched someone you care about spiral down a dark path, struggling with addiction and searching for a way out? If so, you will want to tune into this episode of Finding Common Ground.

    In this compelling episode, we delve into a reality that is often hidden behind closed doors with our guest, Theresa Bolos. She courageously shares her journey of hitting rock bottom when her drinking escalated to a crisis, culminating in an arrest. Now, every fourth of the month marks a celebration of her recovery—a powerful reminder that even in our darkest moments, we can find the strength to change our lives.

    Theresa opens up about the emotional toll her addiction took on her family, revealing the painful truth that their love and support alone weren’t enough to save her. Her story is a testament to resilience, illustrating the challenging yet rewarding journey of rebuilding trust and relationships, even when some may never fully return.

    We’re also joined by Elizabeth Caton-Burm, a psychiatric nurse practitioner who leads the Tri-D Program at Catholic Charities Family & Community Services in Rochester, NY. This groundbreaking clinic specializes in helping individuals with intellectual and developmental disabilities (IDD), mental health challenges, and addiction—one of the few in the nation to do so. Beth sheds light on the complex intersections between these issues, providing insights into how integrated care can truly transform lives.

    While Theresa's story is deeply personal, it resonates with broader themes of coping with stress—especially relevant for families caring for loved ones with disabilities, who often face heightened stress levels. Beth's clinic is at the forefront of addressing these challenges, offering hope and tangible support to those at the intersection of IDD, mental health, and addiction.

    Join us for an enlightening conversation that reminds us that no matter the obstacles we encounter, there is always an opportunity for hope and a new path forward. Whether you’ve experienced addiction firsthand or are simply seeking to understand it better, this episode offers invaluable lessons on resilience, healing, and the light that can emerge from even the darkest places.

    Tune in and be inspired by stories of recovery and the groundbreaking work being done to support those with complex needs. You won’t want to miss it!

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    44 分
  • Inclusion Insights from Research and Real Life with Colgate Professor Regina Conti
    2024/09/25
    In this must-see episode, we sit down with Regina Conti, a Colgate professor, renowned researcher, and proud mom to a neurodivergent child. Regina’s groundbreaking work in motivation, resilience, and social inclusion for individuals with IDD is deeply informed by her personal journey as a mother. She brings a wealth of expertise and heart to this conversation, making her a guest you won't want to miss. Together, we discuss her early research at a non-traditional school that redefined student success, and dive into the real challenges of achieving true inclusion for those with profound needs, offering powerful insights and actionable takeaways.

    This episode is packed with eye-opening perspectives that can help reshape how we approach inclusion. Regina's contributions are sparking conversations that could positively impact the future of support for the neurodivergent community.

    Learn more about her on Colgate's website: Regina Conti Bio.

    This podcast is completely grassroots—no big-name sponsors dictating our content. We’re investing in this because we believe that unfiltered conversations with experts like Regina can move the needle on issues that matter to families like ours.

    Please support us by liking, commenting, and sharing this episode on YouTube or your favorite podcast platform.️

    Subscribe to our YouTube channel (it’s free!): YouTube Channel
    ️ Follow us on podcast platforms: Podcast Platforms
    ️ Join our Facebook group: FB Group


    For just $2/month, join our Supporters Club: Supporters ClubYour Supporters Club membership goes directly to studio costs and helps keep this podcast going. Those helping us get this off the ground will get access to exclusive content and discounts in our soon-to-launch merch store. We prefer to keep this “amongst friends” and create a podcast with purpose, by families, for families. Your support means everything!







    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    49 分
  • Presuming Competence: Otto's Journey Beyond Words
    2024/09/11
    Join us on an inspiring episode, where we explore the transformative power of presuming competence in nontraditional communicators. In this episode, we feature Otto Lana, an exceptional advocate, poet, entrepreneur, and award-winning self-advocate who considers himself a "multi-modal communicator."

    Otto is more than just resilient. While many become bitter when it feels like society has written them off due to their inability to effectively express themselves with spoken language, Otto shares a different perspective. He compares this fight for recognition and respect to the civil rights movements of the past. Although he wishes this "revolution" had started sooner, Otto is committed to being one of the faces advocating for acceptance and inclusion, understanding that real change takes time. Otto has shattered stereotypes and reinforced that communication is a fundamental human right. His story is a powerful reminder that everyone has the capacity to advocate for an authentic life, regardless of how they communicate. Learn more on his website.

    We’re also joined by Marilee Bugeson, a developmental speech therapist from California specializing in the DIR (Developmental, Individual-differences, & Relationship-based) model. Marilee's relationship-based approach has been instrumental in understanding the unique needs of nonspeakers and unreliable speakers. Together, Otto and Marilee discuss how trust, respect, and a presumption of competence can unlock communication pathways that were once thought inaccessible.

    This episode is a must-listen for anyone interested in disability rights, speech therapy, or the power of inclusive communication. Whether you’re a family member, professional, or advocate, "Otto’s Voice" will inspire you to challenge assumptions and support others in discovering ways to share all the amazing ideas that can be "trapped in an uncooperative body."

    As a startup, we’re doing our best to balance this podcast with our family responsibilities and "day jobs," because we know how vital these discussions are. If you’re enjoying our content, please consider subscribing to our channel and joining our Supporter's Club through Spreaker. Your support, even just $2 a month, directly helps cover studio costs and ensures we can keep producing impactful content. Thank you to everyone who has already signed up!Subscribe and connect with us:
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    • Supporters Club - HIT THE YELLOW SUPPORT BUTTON


    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    35 分
  • Jose's Home Care Story: "Gov Hochul, Why Don't We Matter?"
    2024/09/06
    This episode dives deep into the harsh realities facing home care in New York State while dispelling common misconceptions about those who need caregiving. You'll meet Jose, a resilient individual whose life changed forever just before his 15th birthday when a tragic swimming accident left him with a broken neck. His recovery was grueling, but the tougher lesson was discovering how people who need care are often treated as "less than"—even though any of us could find ourselves in that position one day.

    Before discovering the Consumer Directed Personal Assistance Program (CDPAP), Jose faced a heartbreaking ultimatum: Allow a live-in caregiver to move into his bedroom or be sent to a nursing home. No young adult should have to make this choice, but Jose refused to let his injury or need for care define him. He fought to reclaim his independence, choosing to live life on his own terms. Join us as Jose shares his eye-opening journey through a flawed care system and why CDPAP became a lifeline for him and thousands of others. We unpack the potential impact of Governor Hochul's proposed changes to this vital program, which could jeopardize the well-being of countless New Yorkers. And don't miss our discussion on groundbreaking legislation that could allow parents to step in as caregivers when professionals aren’t available. Finding caregivers is already challenging, but securing nursing support is even harder.

    The NY Family Complex Care Assistant Act (A9034/S8599) would compensate parents who provide critical, complex care—often preventing their loved ones from being institutionalized and enabling them to stay at home. The stakes are high: If CDPAP is disrupted, over 250,000 people and their caregivers—nearly a million New Yorkers—would be directly impacted. Jose shares what it feels like to "walk a tightrope," constantly fearing that "someone in Albany" might cut his safety net, putting his life at risk. He poses a powerful question to our Governor: "Why don't we matter?" Jose doesn’t want his son visiting him, locked away in a nursing home like he’s done something wrong; he knows he’s entitled to a life in the community, surrounded by his family.

    And in a poignant moment, he talks about losing a trusted caregiver during the pandemic and the unrecognized value of those who do this crucial work. In a state still haunted by the legacy of Willowbrook, shouldn’t we be leading in disability rights? This episode reveals just how far we still have to go. Don’t miss the 30-second ad mentioned in this episode that features our co-host Heather and her daughter Devyn. You can watch it here: Ad Video. Tune in to hear New Yorkers demand answers: Why the rushed timeline?

    Why are out-of-state corporations being favored? Why are critical safeguards like the Comptroller’s review being bypassed? Join advocacy efforts to protect CDPAP at www.protecthomecare.org/ Heather and Steve are excited to have you join this community! If you like what you hear, hit that subscribe button on YouTube and follow us for more real talk on the issues you care about. Want to help us keep these conversations going?

    Join our Supporter's Club for just $2 a month—less than your morning coffee. Every bit helps cover studio costs and keeps the content flowing. Ready to make a difference? Hit play, join the conversation, and become part of the change.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    49 分
  • An Unfiltered Look into Foster Care: Tristian's Journey Into Adulthood
    2024/08/22
    In this powerful episode of Finding Common Ground, Steve and Heather sit down with Tristian, a young man whose journey through foster care is both heart-wrenching and inspiring. Tristian opens up about the abuse he endured early in life, the struggles of being shuffled between family members, and the challenges of navigating the foster care system. He shares how he "admitted himself into foster care" and, by "owning" his experience, moved beyond the victim mentality, showing us all how he transformed a rough start into a promising future.

    Finding a sense of normalcy in Steve’s home, alongside other kids facing similar hardships, became a turning point in Tristian's life. His story highlights the unique bond between foster children, who often serve as the best counselors for each other, offering support that is "pure of heart." As Tristian explains, kids don’t have an agenda—they just want you to be happy.

    The episode also delves into the controversial issue of overmedication in foster care, discussing how constant placement changes disrupt continuity of care, leading to missed opportunities for necessary medication tapers. As a result, some children suffer from avoidable side effects, going through life feeling "fuzzy" and numb, growing up believing they need meds (or something else) to cope. Tristian's story emphasizes the need for fostering coping skills and adaptive strategies rather than relying solely on prescription pads.

    Tristian’s decision to detox and reclaim his life after aging out of the system, his service in the military, and his ongoing efforts to give back to the community are testaments to his incredible resilience. His humility and gratitude for those who supported him along the way are truly inspiring. This episode is particularly empowering for children and young adults who may feel overwhelmed or powerless—let them hear Tristian's words, feel his energy, and be inspired to "own" their situations and take control of what they can.

    This episode is a must-listen for anyone interested in foster care, mental health, and the power of human resilience. Tristian’s story is a poignant reminder that while not everyone may be suited to be a foster parent, those who do can make an immeasurable difference in a child’s life.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    54 分
  • Breaking Free: Teena's Journey from Institution to Independence
    2024/08/06
    In this captivating episode, we sit down with Teena, an adult with Cerebral Palsy, who shares her journey of resilience and determination. Placed in an institution as a child, Teena did everything she could to get kicked out and succeeded. Listen to her powerful story of breaking free from institutionalization, navigating life with disabilities, and achieving milestones like marriage and motherhood. Teena's story is a testament to the human spirit and the importance of advocating for a life of dignity and independence for all. Don't miss this eye-opening conversation that challenges past norms and celebrates the triumph of the human will. Learn more about Teena on her website: www.teenafitzroy.com and by watching her TedX Talk: https://youtu.be/3BrPCKUyFKM?si=yhXPAO1ZUaa340CE

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    52 分
  • NYS AM Buttenschon Encourages Families to Speak Up
    2024/07/08
    Welcome to our latest episode! Today, we introduce NYS Assembly Member Marianne Buttenschon from District 119. Before taking office, Dr. Buttenschon was the Dean of Public Service and Emergency Preparedness at Mohawk Valley Community College. She and her husband, Don, a retired school psychologist, have deep roots in their community. They have three grown children, six grandchildren, and for the past 30 years, have run the Buttenschon Christmas Tree Farm in Oneida County. Marianne joins us not only because she's in Steve's neck of the woods but also because she offers excellent advice for families facing challenges and those looking to make changes in the disability community.

    "Division Creates Weakness" - When Steve was transitioning from his "day job" to full-time advocacy, he sought Marianne's advice on starting a nonprofit. Instead of spending months establishing a 501(c)3 and getting buried in red tape, Marianne suggested a surprising alternative that Steve found invaluable. She shared that all too often, nonprofits are divided, each in their own silo, when they could be much stronger if they rallied together. Tune in to hear what she recommended and how it has helped Steve elevate the family voice and spark changes with unexpected allies.

    "Louder is Not Better, It Becomes Numbing" - Marianne shared effective ways to gain positive attention from state leaders by revealing what encouraged her to support the Ombudsman Bill. This important piece of legislation will connect people with autism, intellectual and developmental disabilities (A/I/DD) to a neutral party to help them understand their rights and seek resolution for grievances. It has passed both the Assembly and Senate and awaits the Governor's signature. Marianne emphasized that loud, angry protests with lists of demands often strain relationships and sometimes impede what families are trying to accomplish. Curious about what catches her attention and compels her to act? Listen in to find out the key to getting legislators on your side without resorting to loud protests and other traditional advocacy efforts that tend to fall short.

    "When people call my office, first, I apologize they had to call me to get resolution, and then we get to work." - Marianne offers candid advice on navigating system breakdowns and how to effectively engage with local legislators. Want to know the steps she recommends for establishing a working relationship with your local legislators? Tune in to hear more about Marianne's insights and advice for effective advocacy!

    Support our podcast by joining the Finding Common Ground Supporter's Club for just $12/year (only $1 a month). Gain access to exclusive content, receive discounts at our online merch store (coming soon), and help cover production costs, allowing us to continue delivering meaningful content for the A/I/DD community.

    If traditional advocacy has left you feeling unheard and undervalued, this podcast welcomes you to a new era of advocacy! Beyond the podcast, Heather and Steve also offer personalized consultations, workshops, and speaking engagements to support advocates globally. Reach out, find common ground, and let's empower positive change together.

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