Working to keep New Yorkers covered in the wake of massive federal healthcare setbacks

In July, a Republican-led Congress, in almost complete alignment with President Donald Trump’s wishes, passed a so-called “One Big Beautiful Bill” that will bring the most dramatic cuts to the U.S. safety net in modern history. At the center of those cuts are restrictions on Medicaid (mainly work requirements) that experts say could push 15 million people off the program by 2034. The bill also ends subsidies on people’s Affordable Care Act marketplace plans that could force bills for plans to rise 75%. And the bill significantly cuts back healthcare help for immigrants – even those lawfully present in the U.S.

Not surprisingly, the bill was greeted with dismay nationwide by healthcare advocates – including Elisabeth Benjamin, vice president and managing director of health initiatives at the Community Service Society of New York, who played a key role both in creating the state’s no-cost Essential Plan for low-income residents and in an acclaimed service that helps people navigate their health coverage, including choosing an ACA plan from the state’s complex menu of options. 

Benjamin sat down with New York Nonprofit Media to discuss the enormous threats the federal bill poses to New York, what the state can do to mitigate the damage and what she’d still like to get done in a long career spent mostly at CSSNY. This interview has been edited for length and clarity.

Elisabeth, thanks so much for talking today. To start, can you say what you do on a daily basis?
Let me start with a long view and then narrow it down. CSSNY has been around for more than 180 years, trying to improve the lives of working and low-income New Yorkers. Around 30 years ago, it became crystal clear to us that healthcare access for New Yorkers was cost-prohibitive, difficult, cumbersome – you name it. It didn't matter if you lived in Schoharie County or the Bronx, if you were in a union with really good coverage or someone uninsured, if your family had been in the U.S. for generations or if you were a new immigrant. The healthcare system is just too damn hard to work through on your own. 

So it was clear that the state should be resourcing patient advocates to help people through a really complicated system. Even though I worked at Legal Aid at the time, I was involved with CSSNY and wrote their original feasibility report about setting up such a program. And in the past 18 years, we've built out this model where CSSNY is the central hub where people can reach out to us through a toll-free help line (888-614-5400) and then we can help them directly or we can refer them to a local community group that also does patient navigation.

Also, our CSSNY central hub trains those navigators at all those community groups so we're all working from the same hymnal. We make sure everyone's entering all their clients into the same secure, password- and HIPAA-protected database, which we quality-control. And we also do regular case reviews, really difficult cases or really great victories, with all our community-based navigators, so we can learn from one another. A lot of my life's work has been designing and implementing these networks.

Additionally, we have special programs for people who are aged, disabled, using managed longterm care services and who have mental health and/or substance issues.

So basically, you help people work out their health coverage challenges and nightmares?
Yes! We also do a bunch of policy work. For example, in 2012, as the U.S. was preparing for the implementation of the Affordable Care Act, also known as Obamacare, we designed New York state's Essential Plan – a way of leveraging federal dollars to be able to offer totally free coverage to people above the income cutoff for Medicaid, or who are not eligible for Medicaid because of immigration status but who are lawfully present in the U.S. And we brought the plan to stakeholders including hospitals, lawmakers, insurance companies and got the support for it and made it happen.

Another example is how, in 2019, our policy work on medical debt led to eight new state laws mitigating the impact of medical debt on patients. Such as, hospitals can now charge only 2% interest on medical debt instead of 9%. They can't sue people who make below 400% of the federal poverty level (which is currently $62,600 for an individual and $128,600 for a household of four). Providers can't put liens on people's homes anymore or put medical debt on someone's credit report.

CSSNY started its patient navigation system well before the ACA, which included expanded eligibility for Medicaid. What was the coverage landscape like pre-ACA?
In some ways, New York was a pre-ACA model state for coverage expansion because we were able to offer it to people with kids with a household income of up to 150% of the federal poverty level. But it was much harder for a single person to get coverage. You had these very limited programs for low-income people, but if your income was above a very low limit, then your only option was to buy an individual market plan, which in those days cost roughly $1,000 a month. 

So the ACA was just this incredibly exciting moment to fix all that. New York State went from 10-12% uninsured to 5%. It's true that the sheer variety of ACA plans available in the state is not for the faint of heart, hence the need for patient navigation. 

But the so-called Big Beautiful Bill, whose healthcare provisions go into effect on January 1, 2027 – so that Americans won't feel their pain until after the midterms – took a big bite out of the ACA, right?
It sure did. It's an ugly, mean-spirited and punitive bill, especially to New York, because with our Essential Plan, the financing was really linked to immigrants who are here legally, working and paying taxes. And now due to cuts from the new bill, the Essential Plan will no longer be available to non-citizens, even people with Green Cards if they've been here fewer than five years. The loss of their eligibility destabilizes our Essential Plan funding. 

Another cruel cut is that in two years, people who came to receive Medicaid under the ACA's expanded scope will have to recertify twice a year and do work requirements – both of which serve one true purpose only, which is to create complexity that pushes people off health coverage. It's just stupid, because covered people are healthy people and we need healthy people in the coverage system so that all health plans are cheaper. 

And on top of all that, many hospitals, so-called federally qualified health centers, are scared they're going to have to close, which will further destabilize all our healthcare. They're saying that in New York state alone, about 1.5 million people are supposed to lose healthcare. And they're saying that hospitals will lose $8 billion and 65,000 jobs will be lost. And about 51,000 people nationally will die as a result of this bill. It's just horrific.

What does New York state have to do to mitigate that damage?
Ask D.C. for a delay. It's impossible to absorb all the cuts at once. There's some flexibility in the bill, and we really need our Republican members of Congress to use their persuasive authority. And we also want them to lobby to delay the law's implementation on those lawful permanent residents, Green Card holders, who fund our Essential Plan. They have to think about ways to protect lawful immigrants so that they retain that coverage, because otherwise they'll have to go on 100% state-funded Medicaid if they're below a certain income cut-off, and that will cost the state $100 billion a year.

And finally, because it's up to states to work out the details of the more frequent recertifications and the work requirements, we have to figure out how to do that in the least burdensome way possible, like an app where you just push a button.

There's been talk of Albany possibly needing to call a special session to figure out how to make up these cuts.
I don't have an opinion about that. We have super-smart people in the Hochul administration and in the Albany leadership and if and when we need to have a special session, we will. I don't feel like people are being cavalier here. 

The Trump administration has also cut undocumented immigrants from a variety of safety-net programs including community health centers and Head Start.
Yes, and that's being challenged by New York State Attorney General Letitia James and the attorneys generals of 20 other states. But it would behoove New York state to have a law authorizing our state and cities to be able to provide, with their own resources, undocumented immigrants with access to basic needs, such as food pantries and healthcare.

What do you think are the chances that New York state will do all of these things?
I don't know, but we have to try.

OK, so walk us through your typical day.
I've lived in Chelsea since 1989. I get up around six or six-thirty, and until a couple years ago, I'd wake up my kids, but they're in college now. So I wake up and take out my dog and get coffee, sometimes with my partner and sometimes alone. Then I come home and have granola with fruit. Then I work, either from home or from our offices in midtown, which I get to via Citibike. My workday is a mix of a lot of meetings and working on written documents like policy reports, letters and issue briefs and memos. Sometimes we'll be lobbying in Albany.

I usually knock off around 6 p.m. unless I have a deadline. If I'm in the city, I'll often meet friends for dinner. Three of my best friends live within five blocks of me. My partner lives in Williamsburg but we also have a house in the Catskills. Then I'll read novels until bed around ten-thirty or eleven. I really love mysteries and international fiction.

What's your news diet?
I'm old-school, so I get the print New York Times and read that before work. But I also read Crain's, Politico, the Empire Report, the Capital Morning Round-up, the Times Union Round-up and Gothamist. And I listen to NPR and Democracy Now!, often while riding my bike.

What's been your career trajectory?
I got my MPH from Harvard and then worked in India, Morocco, Iraq, Tunisia and the Philippines. But then I decided to work on healthcare in the U.S. So I went to Columbia Law and then worked at Bronx Legal Services in the South Bronx, which was incredibly formative and left me wanting to work on low-income people's healthcare. So I went to the Legal Aid Society and founded their health law unit, where I was for nine years. I was lucky there to work with incredible lawyers on so many amazing cases. The most important was Aliessa v. Novello, which established the right to healthcare for legal immigrants in New York state. I also worked briefly at the NYCLU running their reproductive rights project.

But also while at Legal Aid, I worked on developing the CSSNY patient navigation model. I was an unusual lawyer who loved direct services as much as litigation, and I wrote reports on nights and weekends. And then I came to CSSNY because I wanted to work within the model. Its direct services aspect shows us what issues are coming up for clients, then we do the policy research to document it, then we work with other advocates to try to make healthcare better for people. 
 

You've worked hard for healthcare advances on both the federal and state level for so many years. What is it like emotionally living through the unprecedented setbacks of the so-called Big Beautiful Bill?
[long pause] I feel incredible frustration and dismay that our lawmakers in D.C. don't agree that healthcare should be available for everyone. They have this idea of who's quote-unquote worthy to get healthcare and who's not. And that's infuriating to me because everybody's worthy of healthcare.

Right. So where do you think you're strongest in your skillset?
I'm a pretty good written and oral advocate and I think I'm a pretty good strategic thinker. Like with the Essential Plan, I think I was pretty good at identifying that there was the possibility to do legitimate, deep actuarial claims analysis, and then at identifying stakeholders to get on board to go to lawmakers in Albany and say that this would be a good deal for New York.

What aspects of your work do you find most challenging in terms of your personal skillset?
I'm very ambitious for my organization and sometimes I need to modulate my enthusiasm for what we can accomplish. There's so much work out there to do and so many people who need help that I think it can be a little overwhelming for the CSSNY staff. And I learn so much from the staff and count on them to help me realize when we need to pump the brakes a little.

What are you most proud of so far in your long run at CSSNY?
The Essential Plan – that 1.8 million New Yorkers have free and comprehensive healthcare. And also our campaign to get the ACA marketplace off the ground. And the medical debt campaign.

But I want to be clear that all this was in partnership with many amazing advocates at other organizations.

What is the most chronically frustrating aspect of your work?
That we don't have healthcare for all. Why are we still messing around with this patchwork system where some people have good coverage, some people mediocre and some none at all? The U.S. healthcare system is the most expensive in the world and we still have terrible outcomes and not everybody's covered.

People have tried and failed for years in Albany to pass the New York Health Act, which would basically abolish private health plans and make the state the single payer.
CSSNY endorses that.

But it's been introduced and ignored or rejected in Albany for years. Is it plausible that it will ever pass?
There are ways to do it. For example, Switzerland uses private insurance companies to guarantee universal healthcare, and they also set the provider rates so they're not prohibitive. We should also do that, as Medicare does. But obviously the easiest way to get to universal health care is nationally, and we could start by dropping the age eligibility for Medicare.

What are your career and policy goals for the years ahead?
I'm 61, so I think I'll retire at some point. But before that I'd really like to see New York do the least harm while making it through this really challenging period.