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New York failed to keep its promise that my daughter, Sarah, would not lose her trusted caregiver as the state transitioned to a single fiscal intermediary for the Consumer Directed Personal Assistance Program.
CDPAP is not just a program. It’s a lifeline for those that use it. The impact of this program was both transformative and personal for my daughter and me.
I spent five years working to pass legislation that allowed parents of adult children with disabilities to be compensated through CDPAP in New York State. This was a hard-fought victory that recognized the paramount importance of keeping our loved ones in the comfort of their home, being cared for by those who know and understand their needs best.
A consequential change for our family and families like ours, this allowed us to provide care without the added burden of financial strain. It made the difference between Sarah living at home or being forced into institutional care. That all changed when Gov. Kathy Hochul decided to go to a single fiscal intermediary, Public Partnerships LLC, awarding them the contract in September 2024.
The health insurance provided by PPL is both inadequate and financially unattainable for me, with its high deductible and monthly premium. Because of this, I have been forced out of the program as my daughter’s paid caregiver. Leaving the program was a choice that was forced upon me and not one made voluntarily. It’s heartbreaking to see it all fall apart.
For the opposing viewpoint see: A stronger future for consumer-directed care.
Sarah’s CDPAP services have now been officially discontinued. She is one of the many that have now fallen through the cracks of this transition, despite the assurance of the Department of Health that this wouldn’t happen. The continued “nothing to see here” attitude—as they say everything is going smoothly—is infuriating and disgusting. They continue to blame the consumers and the advocates for all of the challenges that have arisen during this transition to a single FI, even blaming the advocates for the inadequate health insurance being offered.
The governor says, “Your family is my fight.” But it certainly doesn’t feel like she is fighting for my family. Sarah is a human being—doesn’t she deserve to live a life with dignity just like you and me? At the stroke of her pen as she signed the single FI into law, Hochul threw our lives into total chaos. I now worry every day if I can financially sustain staying in our home and keep us together. I worry because Sarah is now at risk of losing the ability to remain in her home and community where she is happiest and thriving. This is what keeps me awake at night.
In Sarah’s 42 years of life, I have never felt this much disregard for Sarah’s life, health and well-being from New York State.
But I will continue to advocate for Sarah to keep her healthy and safe, to be her voice when hers cannot be heard, to hold her hand as we navigate this special needs journey of life, to find those that will help along the way, and to do the right thing. Because Sarah’s life matters!
Doris Behan is a caregiver in Irondequoit. See her August 2024 Rochester Beacon post anticipating this change in CDPAP policy administration.
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