A 2025 Update from DNY ADAPT’s Medicaid Advocacy Group
For years, disabled New Yorkers have endured relentless and deliberate attacks not only on our healthcare services but on our very ability to live safely in the community. Former Governor Cuomo gutted the Medicaid program by proposing massive cuts and stricter eligibility criteria for home care services, making them even harder to access than nursing home care. When Governor Hochul took office, any glimmer of hope quickly faded as harmful patterns continued. The attacks on our programs are abundant: Home care workers still lack fair wages, the Governor proposes to cap enrollment on Medicaid programs and waivers, the Global Cap keeps a firm arbitrary restriction on Medicaid funding, and the state even attempted to push individuals with designated representatives out of the Consumer Directed Personal Assistance (CDPA) program entirely. These are just a few examples of deliberate attacks that have billowed New York into a state we no longer recognize.
To justify the decimation of CDPAP, the Governor’s office continues to perpetuate a smear campaign against us, labeling us as “fraudsters.” She justifies these cuts by claiming a need to restructure CDPAP because it is “exploding,” as if our care is an affront to the public and not a civil right. Meanwhile, the most insidious driver of rising healthcare costs—the privatization of Medicaid via a shift toward managed care contracts with commercial insurance companies—remains in place with no meaningful effort to address this wasteful expenditure of the public’s funds. The state pours millions into private insurance companies that mismanaged Medicaid, yet instead of cutting out costly middlemen, our survival is falsely painted as the financial burden. Meanwhile, some healthcare executive sits on their yacht that was paid for by taxpayers while simultaneously denying us our basic civil right to live in our community. Another day churns on.
This is the landscape we are up against as the single fiscal intermediary (FI ) scheme looms. As of April 1st 2025, Governor Hochul plans to replace over 600 FIs in the CDPA Program with Public Partnerships LLC (PPL), a company based outside New York State. Not only does PPL have a well-documented history of poor service provision, but when similar PPL transitions occurred in states like Pennsylvania, nearly half of the enrollees were lost in the process, a result we have reason to suspect is the real goal of this move by the Governor. The health insurance offered by PPL to full-time personal care assistants (PCAs) is a laughable attempt at coverage due to its high costs and lack of clarity regarding the network. Disturbingly, simply because this expensive coverage is offered, full-time PCAs will likely be disqualified from alternative subsidized policies on the Marketplace, even though PPL’s offering is financially out of reach for most. This will create a health insurance limbo for full-time personal assistants who cannot afford employer-sponsored policies but will also be ineligible for Marketplace subsidies, now left with only mandatory “wellness benefit cards” that only cover basic well visits. This will discourage full-time work as PCAs or cause an exodus from the field altogether. For part-time workers, who also must accept the mandatory “wellness benefit cards,” these “skinny plans” similarly offer minimal preventative care and no meaningful coverage for care related to illness. Part-timers may not realize they lack comprehensive coverage due to the confusion surrounding these purported benefits and miss their opportunity to seek additional illness-related coverage. Further, part-time workers may mistakenly believe they cannot qualify for subsidized illness-related coverage on the Marketplace. The mandatory nature of the wellness cards, financed using wage parity dollars once distributed as FIs saw fit, outright defies the spirit of the 2012 wage parity law. Michael Kinnucan of the Fiscal Policy Institute explored this impending health insurance crisis in detail.
In a time when care jobs are already difficult to fill, more consumers will be left scrambling to find workers, and our CDPA program will shrink—exactly what Governor Hochul has been striving to do all along. We are being coerced into signing a contract with PPL, with the threat of losing critical home care held over our heads if we refuse to sign. This is a profound betrayal of what CDPA stands for—choice, freedom, and dignity. Instead of upholding these values, and being in compliance with the law, elected officials have abandoned us and all taxpayers, their constituents, and diluted the very foundation of CDPA. The layers of betrayal are suffocating.
We cannot view this single-FI scheme in isolation; it is a cog in a larger story of systemic neglect and orchestrated attempts at decimating the services that sustain New Yorkers with disabilities of all ages while increasing costs for taxpayers. Forcing the transition of at least 425,000 Personal Assistants and 280,000 consumers to PPL within an unrealistic time frame is, at best, a naive bubblegum fantasy—or, at worst, an intentional strategy to push vulnerable New Yorkers out of their home care programs; the latter which we suspect is the true goal. It is no coincidence that discussions around fully implementing former Governor Cuomo’s Medicaid Redesign Team’s (MRT2) home care eligibility restrictions are co-occurring. We worry that individuals unable to transition to PPL by April 1st will be forced to reapply to CDPA under stricter eligibility criteria they no longer meet. Advocates have traveled to Albany to visit the PPL “offices,” only to find them eerily empty—a stark metaphor for their lack of care and an omen of the trouble ahead. To twist the knife deeper, New York Department of Health (NYS DOH) has squandered hundreds of thousands of dollars on a statewide commercial that argues all entities and advocates raising valid, well-documented concerns about this transition simply push agendas of deception. A government entity responding to reasonable community concerns with defensive accusations of “lies” is an administration unwilling to uphold the very principles of democracy, accountability, and transparency.
Not only is this an orchestrated attempt to decimate our care, but also to ruin our reputation as advocates and use tired stereotypes of disability to push their agenda. When grassroots advocacy group Caring Majority exposed the empty PPL offices, PPL President Maria Perrin attempted to spin their exposè as an attempt to “….block [vulnerable New Yorkers] from accessing our office for help with their CDPAP benefits.” We are not hapless victims being taken advantage of by activists. They are allies fighting for our rights while the government endangers us. We should be recognized for our integral role in a powerful organizing movement that cuts through the layers of gaslighting this administration spews daily and refuses to surrender.
At our March 5th meeting with the Governor’s Health Budget Team and Chief Disability Officer Kim Hill-Ridley, the circus show of lies and apathy took center stage. They provided us with no numbers or proof of how many consumers have successfully transitioned to PPL, but claimed everything is “on track,” dismissing our data and lived experience. They claim their data is based on information purportedly provided by PPL, which we suspect, has no independent agency checking. Moreover, despite years of advocacy, in which we continuously provided them with evidence of the harm of restricting home care eligibility, they claim to have no research on the very issues we have been warning their office about for five years. It is as if our relentless activism, lived experiences, and the undeniable danger of austerity politics simply do not exist in their eyes. They applaud the smoke and mirrors of an immediate reduction in healthcare costs while overlooking the looming public health crisis of thousands soon to be forced to deteriorate in the community.
This year feels strikingly different—a heavy, ominous, and surreal accumulation of lies loom over our state. The attacks on disability services have become more aggressive, more coordinated, and more difficult to contain. Governor Hochul’s proposed State Budget barely acknowledges the disability community. Most elected officials are silent. Her budget directs massive funding to nursing homes whose wealthy owners donate enormous funds to political campaign coffers—This raises serious concerns about her motivation. With home care eligibility restrictions set to take effect, it’s no surprise she is bolstering the nursing home industry and attempting to cap the Nursing Home Transition and Diversion waiver, a program designed to help people leave these institutional settings so they can receive more equitable and cost-effective care at home. We are left to question if this budget is merely a reaction to the powerful nursing home lobby, health insurance executives, and those funding campaign coffers.
Amid ongoing attacks on our programs, we can’t help but wonder if Governor Hochul’s actions reflect a deeper disdain for the disability community. Of course any contempt is buried under the borrowed Reagan-era “welfare queen” rhetoric, as she insists these cuts are simply necessary to eliminate purported fraud. Advocates know that allegations of this massive fraud have already been debunked. Moreover, if the State truly cared about fraud prevention, they would not contract PPL’s health insurance via a third party administrator with a documented history of fraud. Advocates know this isn’t about saving money, as the Governor’s claimed savings from CDPA restrictions are far outweighed by the higher medical costs when consumers fall through the system and need additional hospitalizations, nursing home stays, or end-of-life care. While she tries to portray herself as the savior of New Yorkers’ tax dollars, we are left struggling to piece together our access to care.
If the underlying message of these policies isn’t contempt, could it simply just be that we are viewed as less valuable to her? Is Governor Hochul just yet another politician that views legislation as an opportunity to gain personal returns on an investment, without regard for the collateral damage? By portraying us as a drain on her system, Hochul and her advisers fundamentally fail to see what great benefit comes from disabled New Yorkers flourishing in the community with proper resources and care. They have labeled us a financial burden instead of recognizing that any investment in our health and autonomy will lead to positive contributions to our local communities. After publicly devaluing us, Governor Hochul seems to then bow to nursing home and private health insurance executives, allowing them to pat her on the head in thanks. Is she simply their puppeteer or the mastermind? Does the difference even matter anymore?
All eyes are on New York as they publicly orchestrate their own demise. How the mighty have fallen. It is both shameful and alarming that the Governor’s office is aligning itself with the Trump administration’s disdain for people with disabilities and the elderly, relentlessly pushing to cut healthcare and prioritize cost-saving measures over human lives. Instead of protecting us, they are enabling a system that uses disabled and elderly lives as scapegoats for their own incompetence and mismanagement of government. This not only deepens systemic inequities but exposes a disturbing willingness to sacrifice lives they deem unworthy merely for their own selfish political and financial gain.
As a dedicated activist, psychologist, and most importantly and proudly, a disabled New Yorker, I usually have some hopeful message, call to action, or (maybe inflated?) sense of hopefulness in our power to combat injustice. However, between the recent State and Federal attacks on our community, for the first time, I am truly at a loss for words. All I do know is that we deserve so much better. We deserve a system that values our lives, our autonomy, our right to exist in the community with dignity, and our contributions to our state and country. We deserve leadership that listens, policies that protect us, and a social service system that is well-equipped to support the aging population and the inevitable disabled experience. While it is impossible to predict the future, we at least know that ADAPT, the broader disability and elderly communities, and our loved ones and allies will not be silent, will not disappear, and will continue to fight. We ask that you join us along the way.
In solidarity,
Nina Bakoyiannis, Ph.D., & the DNY ADAPT Medicaid Advocacy Group
If you’re still afloat out there and feeling brave… some ways to get involved:
- Contact your elected officials via phone or social media with your own message:
- Find your State Senator: https://www.nysenate.gov/find-my-senator
- Find your State Assemblymember: https://nyassembly.gov/mem/search/
- Governor Hochul: https://www.governor.ny.gov/content/governor-contact-form
- Send our pre-written letter directly to your elected officials:
- Join our group! We meet every Wednesday evening on Zoom.
- Join DNY ADAPT: https://dnyadapt.com/membership/membership-forms/
- Then reach out to DNYADAPT@gmail.com to join the Medicaid group.
Downstate New York ADAPT 