Thursday, April 17, 2025
With a deadline looming, State Sen. Steve Rhoads and advocates for those with disabilities are urging action to prevent disruptions in New York’s Consumer Directed Personal Assistance Program, warning that thousands of vulnerable residents could lose critical care.
The assistance program is a Medicaid initiative that allows individuals with disabilities, chronic illnesses, or long-term health conditions to receive care at home from personal assistants of their choice.
The transition to a single fiscal intermediary, part of the state’s effort to reform the program, has raised concerns among advocates who said the process has been rushed and poorly communicated. In the past, these intermediaries — nonprofits, independent living centers and health care agencies — have handled payroll, Medicaid billing, and administrative tasks for program enrollees. Under the new system, all enrollees must register with Public Partnerships LLC by April 1 to avoid service interruptions.
Advocates argue that the shift has created confusion among people with disabilities and their caregivers, who rely on the assistance program for essential daily support.
Rhoads, whose 5th Senate District encompasses Wantagh, Seaford, Levittown, Bellmore, Merrick and East Meadow, spoke about the change at a news conference at his district office in Levittown on March 6.
According to Rhoads, Senate Bill S.1189, introduced in January, would repeal the single-fiscal-intermediary mandate, allowing multiple intermediaries to continue serving enrollees, preventing service disruptions. The legislation would also implement new oversight measures, including a personal assistant registry, annual compliance reports, and stricter oversight of fiscal intermediary contracts.
“This bill is about real people, the most vulnerable members of our communities, who rely on these services every single day and who are being ignored by the governor and legislative leaders up in Albany,” Rhoads said. “We cannot play games with their health care.”
The bill would require all fiscal intermediaries to be licensed by the state, and to undergo character and competence reviews by the state health commissioner. It would also establish training requirements for personal assistants.
Rhoads said the bill aims to ensure that assistance program enrollees can maintain control over their health care decisions. He called for action on the bill, which is sponsored by State Sen. Gustavo Rivera and co-sponsored by 38 senators, representing over 60 percent of the Senate. The bill is currently in the Senate Health Committee, and Rhoads urged the committee, which Rivera chairs, to advance the bill so that it can be brought to a full Senate vote.
Gustavo’s office had not responded to a request for comment at press time.
With the transition already underway, the state Department of Health announced that nearly 95,000 consumers and personal assistants had begun or completed registration with PPL, but according to Rhoads’s office, less than half of the program’s enrollees have begun the process. After the deadline, other fiscal intermediaries will be unable to process payroll or billing, Rhoads said, leaving disabled people without services.
In a March 3 news release, State Health Commissioner Dr. James McDonald stated that the transition is intended to protect services, cut Medicaid spending and prevent fraud. While eligibility and caregiver choices remain unchanged, consumers and caregivers must register with PPL by the April deadline to ensure continued payments.
“The facts are clear; New York State is implementing this enacted law to reform the CDPAP program,” Dr. McDonald stated in the release. “This change to one fiscal intermediary will protect the services so many New Yorkers rely on and reduce Medicaid spending at a time when it is more critical than ever.”
Joining Rhoads in his district office were several advocates for those with disabilities, who voiced their concerns over the mandate, including Susan McCormack, executive director of the Long Island Center for Independent Living. She said many consumers are hesitant about transitioning to a single fiscal intermediary, feeling rushed and uncertain about the process. Her organization, a nonprofit based in Levittown, helps people with disabilities find access to services and information that can improve their quality of life.
McCormack said her organization is a facilitator for the assistance program, and is working to get people converted, but the deadline, she added, is not feasible.
“I hate to say this, but people will die,” McCormack said. “People will die if we don’t slow this down.”
Alison Giangregorio, co-chair of the Long Island Family Support Services Advisory Council, an advocacy group that supports families of those with developmental disabilities, said that consumers and their caregivers are struggling with the transition due to a lack of support and communication. She noted that Long Island residents were only notified of the change on Feb. 19, leaving just a few weeks to complete the registration process.
The process to register can be completed via computer, but paper applications are not readily available, Giangregorio noted. She added that it could take two to three weeks for paper applications to be sent to someone who can’t use a computer.
"March is Developmental Disability Awareness Month,” Giangregorio said, “and I find it disheartening that thousands of New Yorkers and people with developmental disabilities, physical disabilities and our seniors are going to be left behind in April.”
Jose Hernandez, 48, a Bronx resident and community organizer with the Consumer Directed Personal Assistance Association of New York State, suffered a spinal cord injury in 1995 and has relied on the assistance program for 20 years. At the news conference, he said the program has enabled him to earn multiple degrees and live independently with caregivers of his choice. With the transition, he fears that he and many other consumers may lose essential services.
“I have never been more afraid,” Hernandez said. “The governor has completely turned her back on us. PPL doesn’t have a good track record. I have heard from many people who have started the process and it’s a confusing mess. You don’t know if on April 1 if you will be able to receive services.”
