This is no April Fools’ joke. Thousands of disabled New Yorkers stand to lose their personal care assistance services if a transition of New York’s Consumer Directed Personal Assistance Program (CDPAP) to a new company doesn’t go according to plan. While the governor’s office insists everything is on track for an April 1 deadline, advocates remain concerned.
What is CDPAP?
Consumer Directed Personal Assistance (CDPA) through the Consumer Directed Personal Assistance Program (CDPAP) allows people to hire, fire, and manage their own caregivers, rather than having an agency send random caregivers that may or may not be familiar with the person and their needs.
CDPA allows for a broader scope of practice than an agency-based aide, permitting CDPAP workers to assist with needs such as trach care, wound dressing, and tube feeding, and allowing the consumer, in many cases, to avoid the more arduous task of finding a nurse to deliver their care.
Some people use CDPAP to ensure their families get paid for caring for them. Others hire their own outside caregivers and use CDPAP to have control over who they hire. Payroll and other administrative tasks are handled by organizations known as “fiscal intermediaries.” Fiscal intermediaries include Centers for Independent Living and other organizations that serve people with disabilities.
CDPAP, like all home and community-based services, is funded through Medicaid, and people must qualify for home care through Medicaid in order to receive CDPA.
What is Governor Hochul’s plan for people using CDPAP?
Citing widespread fraud, ballooning rates of CDPAP enrollees, and too many fiscal intermediaries, accusations that consumers deny, Governor Hochul announced the transition to one fiscal intermediary last year.
Public Partnerships LLC (PPL), a Georgia-based company, won the contract last fall, worth over a billion dollars, to take over CDPAP in New York State. Consumers must move to PPL as their sole fiscal intermediary by April 1, 2025.
Advocates have argued that this simply isn’t possible in the time frame allotted. New Yorkers, both consumers and workers, trying to meet the deadline have been met with unreturned phone calls, conflicting answers from customer service workers, constant website glitches, and other barriers.
As of March 27, PPL has requested that state employees “volunteer” to assist with the transition. Additionally, there are concerns with how PPL handled the transition in other states, such as Pennsylvania, Colorado, and New Jersey. A white paper outlined the failures of PPL in New Jersey. Concerns include delays in paying personal care attendants, no home visits, and no enrollment of new participants.
Nevertheless, PPL claims that satisfaction rates in New Jersey with PPL are “in the 90 – 100% range.”
New Rules, New Risks: Who Gets Left Behind?
Furthermore, PPL and the governor’s office continue to insist that there will be no changes to eligibility for CDPAP. However, this transition is happening at the same time new rules for home care eligibility are being put into place.
Currently, to qualify for home care, including CDPA, people must demonstrate needing assistance with only one item on a list of activities of daily living, including walking, dressing, bathing, and others.
Under former Governor Cuomo’s Medicaid Redesign Team 2 (MRTII), implemented by Hochul, the eligibility criteria will be significantly restricted, with instrumental activities of daily living (IADLs) like shopping and cooking completely excluded from consideration.
People with dementia or Alzheimer’s must need at least supervisory assistance with at least two activities of daily living (ADLs), and those without dementia or Alzheimer’s must need at least limited assistance with physical maneuvering with “more than two” activities of daily living (emphasis added).
Advocates remain concerned that this new eligibility restriction may violate the Community First Choice Option, a significant source of federal funds, by establishing different criteria for different diagnosis groups.
Further, it is likely that many who need help with IADLs that have now been excluded from the criteria will be left ineligible for home care, either leaving them unattended at home or forced into costly institutions.
The Governor’s office, including Chief Disability Officer Kim Hill Ridley, stated in a March meeting with advocates that the eligibility restrictions would not go into effect until after the PPL transition; however, that assurance cannot be found in any written documentation, including PPL’s own FAQ on the transition.
The chaotic and confusing PPL transition, coupled with eligibility restrictions, represents a double danger for consumers.
Advocates Speak Out as Deadline Approaches
When advocates visited the supposed PPL New York headquarters, they found them mysteriously empty. PPL leadership subsequently blamed these advocates for blocking access to services for “vulnerable New Yorkers.”
PPL and the state have continually blamed advocates for raising valid concerns, accusing them of spreading lies and misinformation. The state launched its own campaign aimed at combating the misinformation, but thus far have declined to share how much money they are spending on the campaign that could be going towards making sure the transition goes smoothly.
Advocates protesting the transition in Albany were arrested. An open letter from PPL purportedly addressing the misinformation said that advocates who protested at PPL headquarters are “by no means representative of the approximately 250,000 consumers who are part of CDPAP, many of whom have already registered with PPL.”
This leads to the question of who, exactly, is representative of CDPAP consumers, given that many of the advocates who protested are CDPAP consumers themselves who are simply concerned about this seismic shift in the services that keep them alive and living in the community.
After months of mounting concerns from advocates, and pressure from lawmakers as well as 1199 SEIU, the union for personal care attendants, which stands to profit from the transition and also blamed misinformation campaigns for the delay, the state announced a “late registration window” to extend into the end of April.
Consumers and personal care attendants will have until April 30 to register with PPL. But advocates say this is still not enough. Personal care attendants will be paid “retroactively” for the weeks they are working after the transition, but before they’ve completed signup with PPL.
CDPAP Transition Affects Personal Care Attendants Financially.
However, many personal care attendants worry how they’re going to pay the bills with “retroactive” pay. Vincent Centauro, a personal assistant in the CDPA program, told CBS news:
Retro pay ain’t gonna help pay the bills. A lot of our staff members and ourselves, we live paycheck to paycheck.
“The fact that there’s a grace period and not an actual delay is problematic,” said Maggie Ornstein, who cares for her mother through CDPAP.
Current FIs lose their service authorization on March 31st. PAs are being told just keep working and you’ll get paid later. How do we trust this company?
She provided screenshots that show blank pages on PPL’s website where forms and other information should be:
- A blank page stating “Personal Assistant Agreement Form.”
- A screenshot of “pplathome.pplfirst.com” with a blank page stating “This webpage is using significant energy. Closing it may improve the responsiveness of your Mac.”
In addition, there is concern that the third party administrator PPL has chosen to deliver health benefits to personal care attendants is fraud-linked and wholly inadequate.
The PPL transition has thus far been fraught with chaos and incompetence. When consumers voice their concerns, they are gaslit and blamed for the obvious shortcomings of this company. I fail to see how PPL will save the state any money because it is merely another layer of bureaucracy. Millions have undoubtedly been spent already working through the failures of the enrollment process. New York is historically a leader in CDPA and to see it sell out to a greedy and, frankly, shady company is heartbreaking. Our lives hang in the balance and the Governor seems unconcerned.
— Kathleen Downes, disabled advocate who relies on CDPA
The [fiscal intermediaries] before, you had a choice… One of the backbones of the [Americans with Disabilities Act] and the Olmstead [decision] is that people have a choice to live in the least restrictive environment.
— Maggie Ornstein
Though PPL claims that consumers aren’t losing choice under the new program because they can still choose their own personal assistants, advocates are not convinced.
We need a delay that allows current FIs to continue paying people until their transition. We need an actual delay.
— Maggie Ornstein
The stakes are high. PPL’s own materials state that if a consumer and their personal care attendants are not signed up by the deadline, they are “opting out of CDPAP,” meaning the consumer will have to transition to traditional agency-based care or even wind up in a nursing home due to lack of care.
With only days to go until the official transition, the future of thousands of people with disabilities and their caregivers is at stake.
Bio:
Cara Liebowitz is a freelance writer, activist, and speaker. Her work has been featured in the Washington Post, Everyday Feminism, and Able News, among others. Cara lives in Brooklyn, NY with her roommate and one-eyed cat named Odin. You can view her work on her website at http://www.caraliebowitz.com.
Editor’s Note:
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