For the past year, disabled New Yorkers have been coming together to strategize a plan to prove the programmatic worth of the Consumer Directed Personal Assistance Program (CDPAP) to government officials like Governor Kathy Hochul. The proposed shift from over 600 Fiscal Intermediaries (FIs) across the state to a single entity, under the guise of saving money and cutting Medicaid costs, will have adverse effects that can force disabled and elderly individuals back into hospitals, rehabilitation centers, and nursing homes, reversing what the program was set to eliminate in the first place. Such changes pose a significant risk to the disability community, many of whom need these services to live our lives with quality, dignity, and equity.
The move to a single FI will inevitably lead to lower rates and a standardized base rate for all caregivers who are part of CDPAP statewide, potentially stripping away the personalized benefits packages that many rely on. Such dilemmas and uncertainties have been alarming for our community. Local FIs have provided us with many benefits including local resources, tailored to meet the unique needs of individuals, as well as keeping our choices and our caregiver’s choices open. If such a transition occurs, such rights to quality employment options will become lost.
Furthermore, what works for one person may not work for another. Current CDPAP processes allow flexibility and the ability to choose care that best suits our needs. This choice is not just a luxury; it is a necessity!
Different FIs have offered my caretaker and me various clocking in and out processes, as well as various benefits packages. Both are crucial for maintaining our autonomy and preferences with homecare agencies we can both love. My caretaker and I switched from one FI to another due to delays in payment and the requirement to take live photos for each clock in and clock out, which we both felt violated our privacy. The current system of allowing consumers and caretakers to “shop around” for different FIs has been reflective of a system that respects not only our comfort but our right to choose an FI we feel peace with, heard, and valued by.
Keeping our caretakers happy is an essential part of our dynamics to ensure the continuity and quality of the services we receive. Government officials are not there with us every day, but our caretakers are, and no government official should be determining how our health needs are met in the community, especially considering the close personal tasks our caretakers provide for us.
My caretaker has been someone who it has taken years for me to be comfortable with. I cannot fathom having to find someone else.
We need only look to other states to see the potential disaster awaiting us. Massachusetts and Pennsylvania have already experienced the negative consequences of similar transitions. In Pennsylvania, the failure to pay caregivers led to a retention crisis, leaving consumers without essential care or worse, forced into institutions. The lives and safety of potentially 175,000 New Yorkers are at risk.
We cannot let New York follow this dark path.
Jose Hernandez, another CDPAP consumer, has a story that represents what is at stake. CDPAP allowed him to hire one of the most wonderful caregivers he had ever had, Fausto Romero. Fausto became more than just a personal assistant; he was with Jose for 12 years, and they became like family.
Tragically, Fausto passed away at the beginning of the pandemic. Fausto, making minimum wage in a state that never considered personal assistants or home care workers essential, lost his life on the line for a man he loved, and also loved to care for. Despite the crucial work they do and the sacrifices caregivers make, the governor is choosing to dismantle our CDPAP program, forcing many personal assistants to work for less than what they deserve or may be currently making, and/or forcing them out of the industry altogether.
They deserve choice, and we deserve choice.
Kimberly Hill, NY Chief Disability Officer, echoed this sentiment. As someone who has relied on CDPAP, she understands the importance of keeping our caretakers happy. The relationship between consumers and caretakers forms irreplaceable bonds. Such bonds aren’t just about care or money, but about trust, comfort, fulfillment, and respect.
The proposed changes represent a step backward, undermining the progress we have made.
Governor Hochul called the CDPAP program a “racket,” causing many mischaracterizations of this matter. “Racket” describes illegal or dishonest schemes. I have a personal message for the Governor: the only “racket” going on with CDPAP has been your harmful perpetuation of the belief that the rights of people with disabilities don’t matter.
Please reach out to your elected officials and support saving CDPAP. Put a stop to Governor Hochul’s decisions that threaten the safety and livelihood of our integration and community. Visit ProtectHomeCare.org to find out how you can help. Together, we can protect homecare and ensure that CDPAP remains a vital resource for all New Yorkers who depend on it.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.