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Disabilities Beat: NYS Consumer Directed Personal Assistance Program will be run by one business

Two disabled and Black people bake together. The woman on the right vigorously stirs a mixing bowl while the non-binary person on the left watches laughingly.
Personal aides who are employed through the Consumer Directed Personal Assistance Program, or CDPAP, provide a variety of supports that allow people with disabilities to live independently, such as assisting with chores, cooking, and helping with personal care.
This stock photo shows two disabled and Black people baking together. The woman on the right vigorously stirs a mixing bowl while the non-binary person on the left watches laughingly.

New York State’s recently-passed 2024-2025 budget included a lot of changes for the disability community. One major change came at the last minute: the Consumer Directed Personal Assistance Program, or CDPAP, will move from being administered by hundreds of organizations and businesses to only one.

While some details of this change are still unclear, we spoke with a policy expert who was on the ground in Albany during deliberations to hear what we currently know about the state of CDPAP.

This week’s Disabilities Beat features part of a recently aired one-hour special on the New York State Budget, which you can hear the entirety of by clicking here.

PLAIN LANGUAGE DESCRIPTION: The budget included a last-minute change. The Consumer Directed Personal Assistance Program (CDPAP) will be offered by only one business.

Right now, an estimated 250,000 people with disabilities receive CDPAP through somewhere between 600 to 700 organizations or businesses, called fiscal intermediaries, according to Todd Vaarwerk, who is the Chief Policy Officer at Western New York Independent Living.

In CDPAP, a person with a disability gets a certain number of hours for a personal care aide to come to their house, and help with physical tasks like cooking, cleaning, and personal care. If someone is eligible for the CDPAP program, they work with a fiscal intermediary to make sure their worker is paid using state money.

Todd explains in this interview that the state has been concerned about the growth and regulation of this program for a while. Many advocates were concerned about this change and went to Albany to ask the state to include the organizations that created the program in this new change.

Todd explains that advocates are concerned about a loss of choice since they wouldn’t be able to choose an agency based on cultural or language needs.

Todd says advocates convinced the state to make some organizations run by people with disabilities and certain culturally-focused organizations to work under the main fiscal intermediary, as sub-contractors.

If organizations take legal action against this change, it may not happen for a while, according to Todd.

TRANSCRIPT

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

This month we’re sharing highlights from the recently-passed New York State budget for 2024 to 2025. One major change came at the last minute: the Consumer Directed Personal Assistance Program, or CDPAP, will move from being administered by hundreds of organizations to only one. This interview has been edited for length and clarity, but we have the entire discussion about the budget, including more perspectives and additional aspects of the budget on our website at WBFO dot org.

Emyle Watkins: First, I want to introduce Todd Vaarwerk from Western New York Independent Living.

Todd Vaarwerk: Well, I'm the Chief Policy Officer at Western New York Independent Living. I'm a person with a developmental disability who's worked in the independent living field for 30 years.

Emyle Watkins: Todd, tell us a little bit about what happened to CDPAP, as we call it, or Consumer Directed Personal Assistance Program in the budget.

Todd Vaarwerk: CDPA, Consumer Directed Personal Assistance, it's a program that the state's been very concerned about for a while because of what they referred to as explosive growth in a three to four-year period from 70,000 people to about a quarter of a million people. Now we can have an argument about where we think that growth comes from, but when we talk about CDPA this year, what they did was they said, we're going to cut out all of the fiscal intermediaries. And this is the way that all of the consumer-directed and even the self-directed services work. We work through intermediaries, we work through agencies that act as our representatives, and in the CDPA position, they're the employer of record for the aide that comes to my house.

Emyle Watkins: They're the ones who disperse that money from the state.

Todd Vaarwerk: Correct, right. For the listeners to know, I'm a person in a wheelchair, I use 35 hours of consumer-directed personal assistance services per week. They come in to help me with the physical things necessary to help me get ready for work, keep my place clean, get me the drugs that I need on time, and all that stuff. But it's not tied into as detailed a plan as the direct support professionals have. They do a lot of the same kind of work, and they get paid kind of the same amount that the direct service professionals get paid, but the state is worried about cost. The state is worried about consumer-directed being a nine-billion-dollar industry.

Todd Vaarwerk: So coming out of the Governor's 30-day amendments where they just stuck a whole bunch of things in that says, “we need to reform this program. We're going to give the Department of Health carte blanche to fix it.” Well, we're a little concerned about that because [the] Department of Health doesn't necessarily come to the disability community and say, “Hey, how's this fix going to affect you?” They issue an emergency regulation and before you know it, no aide would be able to work more than 40 hours a week. So we fought that in, for the listeners, what are called the one house budgets. The governor comes out with her budget and then the assembly comes out with their budget and the Senate comes out with their budget and all those budgets have colors. And then –

Emyle Watkins: – And then you have the amendments, and then you...

Todd Vaarwerk: Well, three people come in a room and then they agree on one budget, and that's what the budget language is. At some point in this budget, they decided in discussion that they were going to have one fiscal intermediary statewide for all 250,000 people in the program. Now, the reason why they think that this is going to save money is because currently the number of fiscal intermediaries statewide is between 600 and 700. They're not even sure about the exact number because according to their research, 30% of those people don't fill out cost reports as required by law.

Emyle Watkins: And to be clear, there's been a known problem with these fiscal intermediaries. I mean, there was a report, I believe in 2018 from the Inspector General of the Department of Health and Human Services, and they basically said, “New York State, hey, you've got to give us $74 million in Medicaid [funding] back because we think it was reimbursed incorrectly through these FIs.” So we know that there has been a challenge with regulating these FIs, but going to a single fiscal intermediary, how is that going to impact disabled consumers like yourself?

Todd Vaarwerk: It takes away choice. Imagine if we said to the DD [developmental disability] families on self-direction, “Hey, all of a sudden you're not going to be able to deal with that local agency that helps you develop your budget. We're going to give a gigantic state contract to an out-of-state guy who's going to come in and manage that budget for you.” They're based in California, Pennsylvania, or West Virginia. Now all of a sudden they've got a contract with the state and they're going to manage the services for you.

Emyle Watkins: And to be clear, in the budget language, it says that that new FI does have to be someone who works in at least one other state.

Todd Vaarwerk: Mhmm. Now, what we were able to do is we were able to remind the legislature about the disabled community that created this model. It came from the independent living centers and an organization down in New York City called Concepts for Independence, where we don't talk about whether or not you're hiring your relative to come work for you. We're talking about who you choose to hire so that you can stay independent in your home and proceeding with the goals that you choose for your life. A bunch of the other fiscal intermediaries just care about, and they advertise it, “You can get a relative to come work for you, and Medicaid will pay for it!”

Todd Vaarwerk: So here's the state trying to deal with what we might refer to as bad actors, although every circumstance is different, and they come out of this thing saying, “Well, there's going to be one fiscal intermediary.” Even we in the independent living community know that the model needs fixing, right? And the cuts should not come from me or my hours or the wage for the aide that gets paid to help me. That's one of the reasons why we're arguing about the model being more efficient is because we want that administration money, maybe to more go towards supporting salary so that that person can still work for me and not take the job at Target.

Emyle Watkins: Now, from my understanding, advocates were able to get in the budget that there will be a single FI, but independent living centers like yours and a couple of culturally focused FIs will remain as subcontractors.

Todd Vaarwerk: Correct. And I have to say because I want your listeners to know that advocacy on disability issues is sometimes really complicated. We were really only successful in doing that based on the power of the consumers that came and also being able to get support from the major healthcare union in New York. So this is a whole thing where my life could have substantially changed literally on a week's notice, right, because the proposal got announced by the governor on a Monday and was in the final budget language on Friday morning. This is how quick the New York State budget works, and it was because of our local delegation, especially the upstate delegations, and our work with all of the players to be able to turn the train just a little, just to make sure that there is subcontracting language and even that language is as of yet unclear. So we're waiting for budget language to turn into regulatory language.

Emyle Watkins: So as of right now, we know that these changes are coming and we don't fully know what they'll look like in the end.

Todd Vaarwerk: The CDPA changes, I'm going to be really honest, I think there's going to be some legal challenges to them. So while they're coming, I don't think they're going to be coming as fast as the state would like them to.

Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at WBFO dot org. I'm Emyle Watkins. Thanks for listening.

Emyle Watkins is an investigative journalist covering disability for WBFO.