‘They’d Rather We Be Dead’: New York’s Home Health Care Gambit

At that moment, the state was less than 3 weeks away from the start of a massive change to a critical home care program. One that would wipe out hundreds of small home care agencies and replace them with one large, controversial corporation.

Bird-dogging is a tactic used by grassroots advocates to confront politicians about an issue and publicly document their response. Despite feeling ill, Farrar said yes. After all, holding politicians to account is in her DNA.

Farrar is a 56-year-old divorced mother of three with a tousled mane of blond hair, an infectious laugh and piercing eyes. Her earliest memory is of being at an anti-Vietnam War rally with her mother. At age 16, her first summer job was at the Independent Living Center in Denver, Colorado. The center was an innovative leader in the disability rights movement, run by the now-legendary activist Wade Blank and a radical civil rights group known as the Gang of 19. The group was instrumental in passing the Americans with Disabilities Act in 1990. In fact, before the final vote in Congress, Farrar was among those who famously crawled up the 100 steps of the D.C. Capitol building, an action that helped lead to the passage of the ADA.

Farrar has used a wheelchair since her 20s, due to being born with a condition called sacral agenesis, a form of spina bifida. Twelve vertebrae are missing in her spine. Over the years, Farrar has had more than 30 surgeries.

Within minutes of the text, Farrar was in her car, an 8-year-old Toyota minivan converted to let Farrar drive using hand controls. She sped over to the mall with her chihuahua, Paco, to meet two fellow activists who’d also answered the call.

They only had to wait a few minutes for the Governor to arrive. Hochul burst through an entry door with an entourage of staff and media. Farrar told me she wasn’t nervous: “I was angry. I was upset. I knew I had a job to do.” What happened next was captured on video, broadcast on multiple outlets and viewed over 10,000 times.

“Governor,” Farrar began, “We want to know if you are going to stop this disastrous transition … the estimate from your own Department of Health is that at least 26,000-28,000 people with disabilities are going to lose their [home care] services.” During the next 3 minutes, Farrar told the Governor that her actions were putting at serious risk people, like herself, who use a popular form of home care called the Consumer Directed Personal Assistance Program (CDPAP, pronounced SEE-DEE-PAP).

The ABCs of home care

To understand what Julie Farrar means about a “disastrous transition” requires a little context.

Consumer-directed home care exists, in one form or another, in all 50 states. Programs like CDPAP allow people—within limits—to call their own shots, like being able to hire family members or friends to provide care.

This type of program softens the blow when, for instance, a home care worker can’t be found and someone has to quit their job to take care of a loved one. New York already has the nation’s worst home care worker shortage, which will likely be made even worse by Trump’s crackdown on immigrants, who make up 37% of New York’s home care workforce. What’s more, in many rural parts of the state, CDPAP is the only form of home care available due to the worker shortage.

In New York, about 280,000 people are on CDPAP and another 425,000 are paid Personal Assistants (PAs).

The pay for PAs is hardly generous, though better than the millions of unpaid hours that family caregivers nationwide endure. Wages are set in Albany, funded by the state’s Medicaid program, and this year it’s $19.10 an hour in New York City and $18.10 an hour in the rest of the state, about $3 above the minimum wage. Once you jump through the onerous hoops to qualify as poor enough to receive Medicaid, and are approved for a specified number of home care hours, the hiring of care workers can move ahead.

Since the origins of CDPAP in New York, in 1982, a hodgepodge of different rules and regulations have governed it. In recent years, the running of this now $9 billion program—like so much of America’s healthcare system—has become heavily privatized.

It helps to think of New York’s public home care system like a layer cake. The base layer, or funding, comes from the joint federal and state Medicaid budget. The next layer is a group of insurance companies, essentially middlemen, known as Managed Long Term Care companies (MLTCs). The final layer is, typically, smaller agencies that break down into two types: One type manages traditional care at home with staff supplied by the agency. The other works in the CDPAP arena, and are known as Fiscal Intermediaries or FIs.

Currently, more than 600 Fiscal Intermediaries operate in New York State; a few are large, but many are small operations. The FIs take care of payroll, ensure compliance with myriad rules, provide training, manage worker benefits, handle paperwork such as timesheets, and so on.

The “disastrous transition” that Julie Farrar spoke of is the plan to eliminate all 600-plus FIs in New York and replace them with a single corporation, Public Partnerships LLC (PPL). What’s more, New York plans to make this massive, complex transition in a hurried, three-month time frame that began on January 6.

This has led to a tangled web of controversy that’s put New York’s home care community into an uproar.

A record of poor performance

Angela Harmer, a resident of Troy, New York, a town of 50,000 north of Albany,  has used CDPAP since 2002 to help her manage with cerebral palsy. She told me, tearfully, “I have never been more frightened due to what’s happening right now.” 

The reason for her fear is simple: “Governor Hochul is handing over the management of CDPAP to one company—PPL—with a terrible track record.”

In the past four years, PPL has had 7 CEOs, which you’d think would be enough chaos at the top to earn a thumbs down in New York. The company has lost or had contracts terminated in 5 states: New Jersey, Washington, West Virginia, Virginia and Tennessee.

In 2020, a disability rights group in New Jersey accused PPL of “egregious fiscal and operational failures” to the point where people were “literally being denied life-critical services.”

In Pennsylvania, PPL took over the management of a self-directed home care program, one that is far smaller than CDPAP. The transition was so poorly handled that 40% of recipients lost their care. On top of that, thousands of workers initially went unpaid for months, leading to a class action lawsuit, still pending, that alleges wage theft.

There are scores of “Reviews” and “Complaints” about PPL on the Better Business Bureau site, where the company has a rating of 1.38 out of 5 stars. A litany of grievances reveals the lives that have been upended. As one desperate customer of PPL wrote in May 2024, “This company will frustrate you to the point of absolute insanity.”

PPL created an app called Time4Care that is used for employee timesheets. Nine of the 10 most recent reviews on Apple’s App Store show very unhappy users. Typical complaints: “Does not provide accurate sign in time and sign out time,” “Rejects services that are approved,” “PPL has short me $400 that I never got back.”

“It feels like there’s new, terrible stuff that comes out [about PPL] every day. It’s bananas,” says Ilana Berger, the Political Director of New York Caring Majority, a nonprofit advocacy group. (Full disclosure: the author is a volunteer member of the New York Caring Majority.)

Yet poor performance of PPL in other states is just the tip of a tainted iceberg.

Follow the money

The world of taxpayer-funded health care is filled with companies most people have never heard of. Many were formed in recent decades as the federal government and states began to privatize public healthcare, to get out from under the staffing expense and hard work of running complex programs.

For example, half of seniors enrolled in Medicare are in corporate-run Medicare Advantage Plans. Three-quarters of those on Medicaid are in managed care plans run by corporations like UnitedHealthcare, which has made headlines for unethically delaying or denying legitimate claims. UnitedHealthcare is part of UnitedHealth Group which had $371 billion in revenue in 2023.

Enter PPL, which was founded in 1999 by Public Consulting Group (PCG). Clearly, PCG saw a niche opportunity to specialize in self-directed home care programs like CDPAP. The company now has operations in 20 states.

In 2022, PPL was spun off by PCG to two hedge funds: Park City, Utah-based DW Healthcare Partners and Chicago-based Linden Capital Partners. PCG executives retained a 25% ownership stake, a fact that thickens the plot.

At issue appears to be a rather glaring conflict of interest. PCG provides health care consulting services for many states, including New York. About 250 PCG employees help run New York’s Department of Health, including Medicaid management. When PPL applied, they were supposed to disclose any conflicts of interest, such as the fact that 25% of the company was owned by the very people who were advising New York on who to award a contract worth billions. But PPL didn’t, and their insider status was only uncovered after they got the deal.

As one of the many lawsuits against this contract declares, PPL “falsely stated … that it had no actual or perceived conflicts of interest.” Had PPL admitted to such a conflict of interest, they likely would have been disqualified.

“It’s literally the definition of the fox guarding the henhouse,” says Bryan O’Malley, executive director of the Consumer Directed Personal Assistance Association of New York. On January 25, in a court filing, an attorney for the state pushed back, claiming “such [decisions] are only handled by state employees.”

Still, other revelations have come to light. Well before any official decision on the contract was announced on September 27, PPL was busy recruiting local staff for CDPAP, providing fuel to claims that the bid may have been rigged in favor of PPL over the 120 other bidders.

The January 6 launch

Despite the nine ongoing lawsuits and glare of negative publicity, the three-month transition of 280,000 CDPAP consumers and 425,000 Personal Assistants to PPL began on January 6.

This will be an arduous climb. The advocacy group Medicaid Matters recommends a timeline of at least two years for a transition of this magnitude. They point out that in January 2024, Massachusetts set a timeline of 19 months to transition just 70,000 people to a single provider. To add to the unreality of New York’s task, each PA must complete more than 15 forms, and the FIs must transfer files on more than a quarter-million consumers.

What could go wrong? Since January 6, just about everything. On Day 1, PPL had a thousand callers, many of whom documented problems such as hour-long hold times, hang-ups, system failures, lack of access to translation, an inability of reps to answer questions about what worker pay would be, or even help people enroll.

In a news report on January 23, PPL said the number of consumers who “completed or started” enrollment was 12,000 over 18 days. That’s about 660 per day, and not all fully enrolled. Simple math says that if registrations continue at this rate, fewer than one in four consumers will be enrolled by the April 1 deadline. And that’s not to mention the hundreds of thousands of Personal Assistants, who have to register separately.

When asked for comment, Lacey Hautzinger, Senior Director of Marketing Communications for PPL, responds via email, “It is our top priority to ensure no New Yorker is left behind,” and details the efforts PPL is making via phone support, in-person events and media outreach. Hautzinger claims that PPL has 1150 employees on their customer support team to make the transition “as seamless as possible.”

While that may be PPL’s intent, the reality on the ground has been far from seamless. “If this continues the way it has been, they’re going to rip care away from a lot of people, and a lot of workers are going to be hurt,” says Bryan O’Malley.

Add to this the issue of sharing people’s private health data which, under HIPAA rules, can only be done with their consent.  Apparently, it wasn’t.  On January 28, a New York Supreme Court Justice imposed a temporary restraining order that stops New York’s Department of Health from expelling Fiscal Intermediaries from Medicaid if they refuse to share private customer health data with PPL. A hearing is scheduled for March 4.

The campaign to discredit CDPAP

There is no question that CDPAP has grown in popularity, and that translates into higher costs to the state. No matter how life-saving it is, a program used by thousands of low-income people who don’t have much political leverage becomes a vulnerable target for budget-cutting.

New York Gov. Hochul has tried to cloak herself in the mantle of reform while attacking CDPAP as bloated and rife with fraud. Last July, Hochul told reporters, “When you see ads [on TikTok] of young people saying, ‘Guess what, you can make $37 an hour by sitting home with your Grandma’—it has become a racket.” She also called CDPAP, “One of the most abused programs in the history of New York,” adding that “something has to give.”

Broadly scapegoating home care workers based on one social media ad is problematic. The governor is misinformed. No CDPAP home care worker makes anywhere close to $37 an hour, as state Medicaid rates are about half that. As for widespread abuse by workers, the state’s Medicaid Inspector General does annual audits. According to the latest available data from 2023, only 6 CDPAP Personal Assistants (out of 400,000) were referred to the authorities for alleged Medicaid fraud. Hardly a “racket.”

CDPAP has also been subject to exaggerated claims about the program’s growth by the Governor and her staff. But those claims don’t mention that, due to the pandemic, traditional home care declined. People who desperately needed care migrated into CDPAP so they could hire trusted friends and family.

According to a new Fiscal Policy Institute analysis, the past six years have seen a 19% drop in the traditional home care model, while CDPAP has grown. But overall, during this time period, home care use has only increased by a modest 3.9% per year.

Governor Hochul also claims that the transition to PPL will save the state $500 million out of a $9 billion program, without providing any evidence to back that up. It appears to be a concerted effort to charge the existing system with waste, fraud and uncontrolled growth in order to pave the way for PPL’s takeover.

“Their numbers are just ridiculous,” says New York Caring Majority’s Berger. “I would say the biggest waste is spending billions on insurance companies.”

There are other solutions

Our population is aging, and the clamor for care at home is growing. New York is perhaps a decade away from peak demand, and there’s already a critical shortage of home care workers due to the field’s inadequate pay.

In 2023, New York’s legislature supported the Fair Pay for Home Care Act, which would have paid workers 150% of the minimum wage. In a compromise, the Governor signed off on a $3-an-hour raise to be phased in, though she backtracked last year in an unsuccessful attempt to roll back the raise. The original Fair Pay proposal remains on the table, and analyses show that paying home care workers a living wage would not just bring more workers into the field, it would also make the economy stronger. Better paid workers will spend more at local stores, pay more taxes and stop needing SNAP and other public assistance.

“It’s just a reality that we’re going to have to spend a lot of money, mostly in Medicaid, on home care,” says Berger. “So we and our partners in the legislature spent a lot of time trying to figure out the best way that we can make a deeper investment in home care.”

That effort led to the creation of the Home Care Savings & Reinvestment Act, which I wrote about for Barn Raiser a year ago. In 2024, the legislation garnered significant lawmaker support. Instead of sticking with a profit-based system, the bill would get rid of middleman insurance companies in the home care arena and put program management in the hands of the state and non-profit entities. Advocates say this would save an estimated $3 billion a year, freeing up that money for better care and increased wages.

Predictably, the bill was rebuffed by the Governor. But another version of it is back this year.

“Last session,” says Berger, “We did a really good job of raising the narrative about corporate waste in home care. But rather than do the correct and brave thing of taking on the profiteers, our political leadership chose to throw workers and consumers under the bus and come up with this very poorly thought-out plan to hire PPL.”

Also on the table right now is a bipartisan bill, sponsored by State Senator Gustavo Rivera (D), that would block the PPL transition, and create a way to more rigorously license and supervise existing Fiscal Intermediaries.

‘I think they’d rather we be dead’

Back on December 17, as Julie Farrar laid out her case, she noticed Governor Hochul grimacing. “With the cameras rolling, she couldn’t wriggle out of it,” says Farrar, “And it was clear she didn’t like to be challenged, especially in front of the media.” At one point, the Governor walked toward her and said, “You’ve been lied to!” and told her that no New Yorkers would lose their home care. Farrar retorted, “I have not been lied to. I’ve been looking at the history of PPL. And is your own Department of Health lying [about consumers losing their care]?”  Shortly after, her chief of staff escorted Hochul away.

I asked Farrar to reflect on confronting the Governor. “Growing up as I did, and having gone through all of this, there’s something in my heart that makes me look at injustice and want to do something about it,” she says. “All disabled people want is to have support so they can lead an ordinary life. I feel like I represented the people whose lives are on the line.”

“It’s just infuriating to know that the Governor is willing to do this. To threaten our autonomy, our very lives, like this. It’s like watching a slow-motion, head-on train wreck. You know it’s going to happen. But do they care? It’s like, ‘Shut up all of you and let them make money.’

Instead of us being out here, protesting, they’d rather we be dead. And if this plan goes through, they might get their wish.”

Michael SolowMore by this author →

Michael Solow’s work has also appeared in the New York Times, The River and the Albany Times-Union. He is a volunteer member of the New York Caring Majority and lives in Kingston, New York.