Épisodes

  • Jose's Home Care Story: "Gov Hochul, Why Don't We Matter?"

    Jose's Home Care Story: "Gov Hochul, Why Don't We Matter?"
    Sep 6 2024
    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 min
  • An Unfiltered Look into Foster Care: Tristian's Journey Into Adulthood

    An Unfiltered Look into Foster Care: Tristian's Journey Into Adulthood
    Aug 22 2024
    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 min
  • Breaking Free: Teena's Journey from Institution to Independence

    Breaking Free: Teena's Journey from Institution to Independence
    Aug 6 2024
    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 min
  • NYS AM Buttenschon Encourages Families to Speak Up

    NYS AM Buttenschon Encourages Families to Speak Up
    Jul 8 2024
    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 min
  • Our Backstories: What Fuels Our Mission

    Our Backstories: What Fuels Our Mission
    Jul 8 2024
    Welcome to our first episode – This is your backstage pass into the lives of our hosts, Heather and Steve! Heather, a Rochester native, discovered her passion for advocacy through supporting her sister with autism. Now a mother of four children with varying disabilities, Heather is known for her compassionate, tenacious approach, and is affectionately referred to as the "polite, but effective badass next door." Serving as Director of Advocacy at AutismUp, Heather spearheads initiatives like their groundbreaking housing project for individuals with autism and other developmental differences.

    Steve, hailing from Utica, learned the value of hard work early on, starting his own business at just 12 years old, which grew into a thriving contracting firm employing over a dozen people. His advocacy journey began when he fought for and secured full custody of his children, including a son with autism. Steve’s unique backdoor approach to advocacy has profoundly impacted his son's life and countless others in his community, earning him the nickname, "The Godfather of Advocacy." His extensive experience providing respite and foster care for nearly 180 children has given him deep insights into systemic issues and inspired innovative solutions that unite communities.

    Steve and Heather first connected through NYADD, one of New York State’s largest family-led advocacy groups, which sparked the idea for this podcast. In this episode, they share personal stories—from pivotal legal battles to forming unexpected alliances—that have shaped their advocacy approach. Get a sneak peek into their innovative strategies and practical tips that you can apply in your own advocacy efforts.

    These two everyday, ordinary people are here to share their "secret sauce," empowering their audience to advocate effectively for themselves and the greater good. Want to join forces? Join the Finding Common Ground Supporters' Club. For just $12/year (that's only $1 a month), supporters gain access to exclusive content, receive discounts at our online merch store (coming soon), and help cover production costs, ensuring uninterrupted delivery of 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 offer personalized consultations, workshops, and speaking engagements to support advocates globally. Reach out, find common ground, and together let's empower positive change.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/finding-common-ground--6199849/support.
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    34 min
  • This Podcast Will Help Us Find Common Ground (Trailer)

    This Podcast Will Help Us Find Common Ground (Trailer)
    Jul 8 2024
    Many families feel like they're treading water, especially those living with autism and other developmental differences. As your hosts, we get it, and we know this frustration all too well.

    In response, we've created tried-and-true strategies that help everyday people achieve extraordinary things. Even those who might have doubted themselves can borrow our confidence, follow one of our "blueprints," and with a supportive community cheering them on, make the impossible happen.

    Each success inspires those coming up behind us, creating a ripple effect of positive change—Which is why we'll never run out of content!Our podcast tackles tough issues head-on with unfiltered conversations focused on solutions.

    We won't avoid "the elephant in the room"—in fact, we'll invite it to dinner! Our unique format appeals to people from across the globe, offering strategies that turn efforts for one into advocacy for the greater good. We breakdown topics like innovative housing, effective self-advocacy, and healthcare complexities, guided by our audience on what to cover next.

    Each episode offers fresh perspectives, featuring many guests you won't find on mainstream platforms. We intentionally invite differing viewpoints because finding common ground with those we see as obstacles is the surest way to create new and innovative solutions.Join our community, plant seeds of positive change, and before you know it, you'll be moving mountains with us! Want to support our mission and access exclusive content?

    Join our Supporter's Club and check out our merch. Let’s ensure the A/I/DD community's voice is heard. If you want to dig deeper, schedule a session with us. We happily work one-on-one, develop trainings, and offer public speaking engagements to assist individuals and organizations in promoting things like inclusivity and equity.

    Join our community, plant seeds of positive change, and before you know it, you'll be moving mountains with us! Want to support our mission and access exclusive content? Join our Supporter's Club and check out our merch.

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