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?
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