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Disabilities Beat: Personal care in New York is about to change

Todd Vaarwerk, a white man with grey-brown hair and beard, speaks at a press conference. He is sitting in a manual wheelchair, wearing dark pants, a brown windbreaker and light colored shirt. He's also wearing eyeglasses and a baseball hat. His hands are in his pockets. A group of people are standing behind him, in front of a paratransit bus.
Emyle Watkins
Todd Vaarwerk speaks at a press conference in Downtown Buffalo on April 12, 2022 (file photo).

In New York, hundreds of organizations administer the Medicaid-funded Consumer Directed Personal Assistance Program - or CDPAP. This program allows people with disabilities to hire their own personal care aids, who are paid through these organizations, which are considered fiscal intermediaries, or FIs. But in a last-minute curveball, the state included a move to a single FI in their state budget.

WBFO's Disabilities Beat Reporter Emyle Watkins spoke with Todd Vaarwerk after the budget passed last weekend. He serves as the chief policy officer at Western New York Independent Living and was in Albany as this change was negotiated. Vaarwerk is also among hundreds of thousands of New Yorkers using this program. They discuss how these changes will impact consumers like him, independent living centers like the one he works at, and how soon this change might happen.

Plain Language Description: Some people with disabilities who need help doing daily tasks like chores or showering, but who can live on their own, have an aide who helps them. In New York, people with disabilities can choose who this aide is, such as hiring a friend or a neighbor to do this work for them. But the money to pay the aide comes through a state health insurance program, called Medicaid. So a business, called a fiscal intermediary, handles paying the aide. This means a person with a disability tells the business who they want to have work for them as an aide, and the business uses state insurance money to pay the aide.

Right now, there are hundreds of businesses making sure these workers get paid. However, when the state was deciding where they would spend money in the next year, they decided they could possibly save money by having just one business pay these aides and manage this program.

Many people with disabilities went to the state capitol after this was announced to voice concern. Some of the businesses that manage this program are run by people with disabilities, or serve certain people with disabilities or people from specific cultures. These advocates negotiated with the state, and while the state will have one business running the program, a few existing businesses will get to continue working under that main business.

WBFO's Disability Reporter Emyle Watkins spoke with Todd Vaarwerk about this issue. Todd has a disability and uses this program to hire his aides. He works at one of the organizations that currently manage this program and is run by people with disabilities. He also went to Albany to be part of the decisions made about how this change would happen.

Emyle and Todd talk about what this change will mean for New Yorkers with disabilities, how soon it might happen, and why some people with disabilities were concerned about the change.


Emyle Watkins: Hi, I'm Emyle Watkins, and this is the WBFO Disabilities Beat.

In New York, hundreds of organizations administer the Medicaid-funded, Consumer Directed Personal Assistance Program, or CDPAP. This program allows people with disabilities to hire their own personal care aides, who are paid through these organizations, which are considered fiscal intermediaries, or "FIs". But in a last-minute curve ball, the state included a move to a single FI in their 2024 to 2025 budget.

Once the final budget passed, I spoke with Todd Vaarwerk, who serves as the Chief Policy Officer at Western New York Independent Living, and was in Albany as this change was negotiated. Vaarwerk is also one of hundreds of thousands of New Yorkers who use this program. Here's part of that interview.

Emyle Watkins: I know that Governor Kathy Hochul announced the move to a single fiscal intermediary on April 15th, when a conceptual agreement to the budget had been reached. And less than a week later, more details have been hammered out, and we have a finalized budget. Do we know what was agreed upon in those negotiations? Because that was a very short time from announcement to budget being passed?

Todd Vaarwerk: Well, you'd think it was a very short time, but for us, it was a really long time. You look at April 15th, versus Friday morning when they finally released the final language on the budget. For us, that was a long time, and we heard an awful lot of stories about how it was going to work.

Ultimately, and I think that this is in no large part due to the advocacy of people with disabilities affected by the program, they decided to keep the independent living centers intact as mandatory subcontractors for the statewide fiscal intermediary. In addition to that, in each region, and they refer to cost regions, right? New York City, Westchester, Long Island, Hudson Valley, and then Rest of State, I think, are the way they're broken out, but each of them will have at least one agency with delegated FI tasks, to handle cultural and linguistic needs to keep aides in the program.

Now, at least one means that there could be many more than one, but at the very least for us, on the independent living side, they wanted to make sure that we had the right to do all of the fiscal intermediary tasks if the statewide fiscal intermediary wanted to contract them with us. You're going to ask me why, and I'm going to say that's because we were the originators of the program. Along with Concepts for Independence in New York City, we were the ones who created this model and brought it to New York. So, to move to one fiscal intermediary after we had created the model and brought it and shepherded it through managed care, it's kind of disingenuous. So we're very pleased that they were able to figure out a way to write it into the budget language, to make sure that those issues were handled.

Emyle Watkins: How will this move to having a single overarching fiscal intermediary impact independent living centers like yours that'll become a subcontractor instead of just being the contractor?

Todd Vaarwerk: Hopefully, the program will be the same, but again, this moves to a marathon from a sprint, because this starts with budget language and then moves to the next steps that the state takes. In the governor's press conference, she talked about the California model, and she kind of misstates the way the California model works. She thinks it works the way she wrote it in the budget. It actually doesn't work that way.

[In California] Counties in the region act as the coordinator for services on the fiscal intermediary side. It's our hope though, through some of the meetings that we had during the budget process, that we'll use this opportunity to build a better model. For people that are in the program, the program's not going away, right? The only thing that's going to happen is your aide will change employers, your aide will go potentially to a different fiscal intermediary.

It's our hope for the independent living centers that it not be that difficult. There's a lot of questions still to work out, especially on the oversight front. Who's going to handle corporate compliance? Who's going to keep medical records? Who's going to make sure that medical records are kept private and confidential? I mean, imagine one company with access to 375,000 people's medical records, plus the consumers, estimated at 250,000. There's a lot to be talked about there, and it's going to be in the executive's hands and the health department's hands to figure out a way to develop that model. What my job becomes now, is to make sure that people with disabilities are deliberately involved in meetings creating that model.

Emyle Watkins: To clarify, that 375,000 number, is that the estimated number of personal care attendants in the program?

Todd Vaarwerk: Yeah, you can estimate on an average about one and a half PCAs [personal care aides/attendants] for consumers. At the very minimum, at least one, even if you're just a person that gets part-time hours, you're going to have one person underemployed doing those hours. But a lot of people, even in the small hour basics, have maybe one or two, like a brother will come in and do five hours, and a sister will come in and do five hours. Every year, those aides have to be medically certified to continue doing the job. That means that medical information is going to be sitting somewhere. So, that is one of a number of questions about how we can make this model work.

Emyle Watkins: From reading and speaking with folks on this issue, it sounds like a lot of people agreed that this program does need more oversight, but do you think this was the best way the state could have approached it?

Todd Vaarwerk: I'm a believer in a collaborative process, but I am going to say that the history of this does say that they did make other attempts to attempt to control it. They made people that wanted to have a certification to operate participate in what's called a request for offers, right? That wasn't necessarily handled the best way it could be, but it was better than nothing. Look at what they've done to change the level of eligibility required in order to get aid service. We've gone from one instrumental activity of daily living to three, unless you've got Alzheimer's, then you only need two. So there's going to be less people eligible.

They created the New York State Independent Assessor to eliminate vagaries in how doctors prescribe home health. I think they've done everything that they possibly can to limit the box.

Now, you're at the point where you're looking at, you know, it could be 600 or 700, whatever number that is, fiscal intermediaries, and if a bunch of them aren't filing cost reports, that's a problem. Now, could they have dealt with those people first? Could we have eliminated the people that weren't filing cost reports before we went to one FI? Yes, but considering the concern that they have over spending $9 billion in aid service, I can understand why people could be in a hurry. That's why it was really important for people with disabilities to stop what they were doing, and come out to Albany, and engage in direct advocacy with the people that represent them, to make sure that our interests were protected.

Emyle Watkins: Do we know how long fiscal intermediaries have before they will either be moved under this main fiscal intermediary, or be forced to close?

Todd Vaarwerk: So the budget, wants it all rolled [out] before April 1st, 2025. I don't expect that'll happen. I think that there's a bunch of fiscal intermediaries who will have something to say, and might go to court because of the investments they've made in the business that they've come to rely on. I think that's going to take a while, right? Ultimately, I think the discussion in the model is going to start sooner rather than later, but the roll-out is going to be based on where the legal challenges go.

Emyle Watkins: Well, thank you so much, Todd. I appreciate you talking with me about this important issue.

Todd Vaarwerk: No problem at all.

Emyle Watkins: To listen to the Disabilities Beat segment on demand, view a transcript, plain language description, and learn more about the changes to CDPAP, visit our website at wbfo.org. I'm Emyle Watkins, thanks for listening.

Emyle Watkins is an investigative journalist covering disability for WBFO.