March 27, 2025
The Boost News
My name is Flip Polizzi Rivera and I want to share my story. Not for sympathy, but because people need to understand what independence truly means for someone like me.
I was born with cerebral palsy. My arms and legs don’t work the way most people’s bodies do. I use technology to communicate, a motorized wheelchair to move and I require assistance — or at least setup — for nearly every task.
But I am not helpless. I am a proud, determined man who has spent my life proving that my disability does not define me. Still, I won’t sugarcoat the reality: Independence is only possible with proper care and support. That is why I need to talk about the Consumer Directed Personal Assistance Program (CDPAP) and why it must be protected.
I relied on CDPAP to live life on my own terms. I fought to leave a 500-bed long-term care facility. I proved that people with significant disabilities can thrive in their communities — if they have the right support.
But now, the state is failing me and people like me in ways that put everything at risk.
I Fought for My Freedom — Now I’m Fighting to Keep It
My early years were rough. My mother faced struggles, and we lost our family home. My uncle, trying his best, became my guardian and placed me in a long-term care facility, believing it was my best option.
But living in a facility is not living — it’s surviving. My days were dictated by staff availability. If I needed to get out of bed, use the bathroom, or eat, I had to wait. That kind of life chips away at you. You are told you are safe and cared for, but without autonomy, is that really care?
Four years ago, I took back control. I reversed my guardianship, built a team of people who believed in me, and — through CDPAP — finally left that institution. CDPAP empowered me to hire caregivers I trust, return to my community, attend concerts, help others with technology, and contribute to society. The people I hire are not just my caregivers; they are my arms, my legs, my independence. And now, I am at risk of losing everything I fought so hard for.
A System Designed to Fail Us
The transition to a single Fiscal Intermediary under PPL has been a disaster. I rely on assistive technology to communicate, but PPL’s system is not built for people like me. Expecting individuals to call PPL to retrieve ID numbers and designate their facilitator is the opposite of accessible. I’ve been hung up on. Placed on hold for hours. Dropped from calls. Promised callbacks that never come. My caregivers and I have done everything in our power to complete this process, but the system is overwhelmed, riddled with errors, and unprepared to accommodate 700,000+ people.
The New York State Department of Health (DOH) has even run commercials suggesting they are “saving” us from so-called “greedy” FIs who are costing taxpayers money. If some FIs were suspected of fraud, the DOH should have done their job and overseen them. Instead, they closed them down and outsourced our home care to a Georgia-based company with a history of failure — a corporation that is partially owned by the consulting firm that recommended NYS transition to one statewide-FI. When caregivers heard about these shady, backroom deals, many quit immediately.
Trying to hire new caregivers during this chaos has been nearly impossible. And if my caregivers’ pay is delayed or disrupted, they will have no choice but to leave. They care about me, but they cannot work for free. And if they do not show up?
I cannot get out of bed.
I cannot transfer into my wheelchair.
I cannot access my communication device.
I cannot eat.
I cannot take my medications.
I cannot shower.
I cannot toilet.
I will become sick very quickly.
If my home care is disrupted, even for 12 hours, I will have no choice but to go to the hospital. That, too, will have devastating consequences. My SSI payments will be reduced. My bills will not be paid. I spent my life savings to buy and modify my home through my ESL special needs trust. If I cannot stay there safely with support from caregivers, I will lose everything.
And if that happens, there is only one place I can go: back to the nursing home where I was trapped for 15 years. That is morally wrong. No one should be forced into an institution because the state failed them.
Why Is This Happening?
I should not lose my way of life because of a rushed transition that cannot really be about saving money or improving efficiency (PPL is anything but efficient). So if this overhaul was never about saving money or eliminating fraud/waste, then why is NYS forcing it through?
Why did Gov. Hochul block the Comptroller’s investigation?
Why didn’t she ask CMS for permission to alter the program and take away consumer choice?
Why is she ignoring the growing number of state and federal officials, Republicans and Democrats alike, who are urging her to stop?
One of the people who worked in the nursing home I lived in is now a NYS Assembly Member, Josh Johnson. I am proud that he has spoken out against this plan from the beginning and demanded an extension. But even with bipartisan calls to halt this, the Governor refuses to acknowledge the harm she is about to unleash.
This is a manufactured crisis. People will lose their caregivers. People will be forced into institutions. And some might not survive it. Why would New York State want that blood on their hands?
We Do Not Have Time
This is not just policy. It could be a matter of life and death. It is the difference between a thriving, independent life and an existence stripped of dignity — or worse.
I should not have to fight for something I flat out qualify for. My Fiscal Intermediary has done nothing wrong. I have done nothing wrong. My caregivers are doing honorable work. And yet, we are all being harmed.
I will not let this happen without a fight.
Will you fight with me?
Flip Rivera Polizzi is a home care advocate and IT professional.
Photo credit: Freepik