The state is planning to overhaul a critical health care program, and New York’s most vulnerable are going to pay the price.
A rushed RFP process is underway to disrupt the Consumer Directed Personal Assistance Program, at least in part aimed at reducing costs to balance the state budget. The move could endanger the health and safety of those who rely on the program, which allows sick, disabled, and elderly New Yorkers to designate their own caregivers and remain in their own homes.
Despite the fact that nearly 250,000 care recipients and twice as many caregivers rely on CDPAP, the state is looking to eliminate competition and create a monopoly outsourced to a single business that, among other requirements, “is providing services as a fiscal intermediary on a statewide basis in at least one other state.” It should go without saying that this won’t ensure better care; rather, it will diminish the quality and availability of support for the most at-risk populations.
In a recent interview, Gov. Kathy Hochul cast a harsh light on CDPAP, labeling the program a “racket.” Her choice of words is not only hurtful but deeply concerning, revealing a troubling disregard for the lives of some of New York’s most vulnerable residents.
CDPAP is not just a program—it’s a lifeline for thousands of New Yorkers. It allows individuals with severe disabilities and chronic illnesses to receive care from those they know and trust, and gives them the autonomy to remain in their homes and direct their own care. This program helps people like my daughter, Sarah, live at home instead of being in institutional care such as nursing homes or group homes. The impact of this program is profound and personal, and it is alarming to see it being dismissed with such negativity.
Hochul’s rhetoric suggests a disconnect between the state’s leadership and the reality faced by those relying on CDPAP. Words matter—they shape perceptions and policies. When a leader describes a vital support system as a “racket,” it diminishes the human dignity of those who depend on it. It sends a message that their needs and contributions are undervalued, exacerbating their already challenging circumstances.
My daughter Sarah, who is 41, lives with CHARGE Syndrome, a rare condition that has resulted in severe osteoporosis, diabetes, and legal blindness, among other health issues. She requires total assistance for all her daily needs. For years, my advocacy has been driven by the goal of keeping her safe and cared for in the home she knows and loves, a task only made possible by CDPAP.
The governor’s critique and the proposed changes ignore the complexity and necessity of CDPAP. For many, including Sarah, the choice of caregiver is not just a matter of preference—it’s a matter of survival. The proposed single fiscal intermediary (FI) model fails to account for individuals’ nuanced needs and the importance of having caregivers already familiar with their specific requirements.
The state is planning to use one company that could limit patients’ choice of who takes care of them, and the new system may not address regional differences, such as the needs in rural or urban areas.
This isn’t just a policy debate; it’s about real lives and the everyday struggles faced by families like mine. I spent five years working with then-Assemblyman Joe Morelle to pass legislation that allowed parents of adult children with disabilities to be compensated through CDPAP. This change was crucial for families like ours, ensuring that we could provide care without the added burden of financial strain. It was a hard-fought victory that recognized the importance of keeping disabled adults in the comfort of their homes with those who understand them best.
However, the continuous threat of cuts and negative rhetoric about CDPAP undermine these achievements. Every year, we fear losing this critical support, which can mean the difference between living at home and being forced into institutional care. The single FI proposal is the latest in a series of policy decisions that seem to prioritize cost savings over the well-being of New York’s most vulnerable citizens.
Hochul has stated that she listens to the people of New York to improve their lives, but her language suggests a lack of genuine engagement with those directly impacted by these decisions. Open communication with stakeholders and advocates is essential in shaping policies that truly address the needs of the community. Decisions driven by misunderstanding only harm those who rely on these programs.
The workforce shortage in home care further complicates this issue. If consumers like Sarah lose their caregivers due to these policy changes, the alternatives are bleak. Group homes are closing, and nursing homes are at capacity. The already strained system could be further overwhelmed, leaving those in need with even fewer options.
I am exhausted from fighting to ensure Sarah’s safety and dignity. The proposed changes to CDPAP are a significant step backward, reminiscent of past eras of institutional neglect. We must not return to those days. Instead, we need to collaborate on solutions that protect and respect the lives of those who depend on CDPAP.
Gov. Hochul, I urge you to reconsider this approach. Let us work together to develop a plan that ensures the health and safety of New Yorkers who rely on CDPAP rather than undermining the program. The priorities should be clear: protecting vulnerable populations, maintaining quality care, and valuing the human lives that depend on these services.
The current plan reflects a troubling disregard for the needs of individuals like Sarah. We need leaders who see beyond financial metrics and understand the real impact of their decisions on people’s lives. Sarah’s life—and the lives of countless others—matters. It is time for New York to reaffirm its commitment to all its residents, particularly those who are most in need of our care and compassion.
Ultimately, words and actions matter. Hochul’s message seems to suggest that people with disabilities do not matter. This cannot be the stance of a state that prides itself on progress and inclusivity. Let’s work together to ensure everyone in New York is treated with the dignity and respect they deserve.
Doris Behan is a caregiver in Irondequoit.
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Doris stated everything perfectly! As the parent of an adult son with autism and dystonia, there is nobody that better understands his needs (he is non-verbal). Government needs to make those most vulnerable their top priority.
Kiddos Doris!
AND yet we have BILLIONS of dollars to give to the freeloading ILLEGAL immigrants coming across the border with some being bussed to some New York cities.
Dear Doris, I feel so badly about your daughter, Sarah, and her medical situation. I feel badly for anyone in that situation. I worry for every citizen about what is going to happen with the medical and caregiver situation. Our medical care as we know is going to change if we let it. The only power we have to not let this happen is to vote in November, and even though some people are hesitant to vote out of their usual party, we will not have the medical care we want or are used to if we end up with a progressive liberal government.
The situation today is not the same as it used to be. The current party is not the same either.
So it’s possible that if we vote in a Progressive liberal party in the end, it could mean medicare for all which means the government will make our medical and caregiver decisions and our doctors will not. In reality, I believe that caregiver institutions are going to cost the taxpayer a lot more in taxes, and income, and maybe in quality of care.
The only power we really have is to vote and sometimes we need to change what we’re used to doing and vote for policy not personality. As the adage goes, if you do the same thing over and over nothing will change.
Personally, I did not vote for Hochul and we would’ve been better off in my opinion had she lost the election. Now we’re stuck with her for now and her decisions and that’s why we have to vote and more people need to vote for a more traditional government. Allowing the government To make caregiver decisions, it’s just spending more money, which is what she would like to do It’s my opinion and I hope we see change in the future. Otherwise, I’m not sure and I’m worried what kind of country we’re going to have.
I assume perhaps you wrote our representatives in the state and local assembly for help? In my opinion again, I’m not sure it makes much of a difference but it’s the only other hope at the moment you might have although I don’t think that they’re going to be ok able to do much anyway.