ROCHESTER, N.Y. — Consumers and caregivers are raising the alarm on the big changes coming to a Medicaid program in New York State.

It’s called CDPAP, the Consumer Directed Personal Assistance Program If you’re disabled or chronically ill, CDPAP lets you choose your caregivers and pay them through Medicaid. In the budget this year, Gov. Kathy Hochul proposed an overhaul to the program. But News10NBC spoke with caregivers and recipients who fear the change will wreak havoc on the healthcare system.

Here’s how CDPAP works. If you — the consumer — need constant healthcare, the state will let you choose from friends, family, or strangers who can act as your nurse or home aid. In New York, those aids — caregivers — get paid and managed by third-party businesses.

“[CDPAP] is a way you get home or you get stuck, you get stuck in the hospital without this program,” said Heather Burroughs.

Burroughs has been using CDPAP for her 17-year-old Devyn for over a decade now. Devyn has a rare genetic disorder. She’s non-speaking, has delayed motor skills, and has life-threatening seizures, sometimes when sleeping.

“I don’t know about you but I need to sleep, so it became really clear really fast that we needed some support at home to keep Devyn home,” Burroughs said.

Devyn now has eight caretakers who rotate out 24/7 care. Several are longtime friends and the third-party business that handles their payments is run by a friend in town. There are around 600 of those, called fiscal intermediaries, around the state. 

In the budget, the governor proposed getting rid of those hundreds of FIs, and streamlining CDPAP payments through just one out-of-state business instead.

“There is no transition plan and no money allocated for transition and no money allocated for transition,” said Bryan O’Malley who represents a nonprofit that supports and includes members of those FI businesses. “And we know that its going to result in tens of thousands of people falling through the cracks, going without services, and ending up in hospitals nursing homes or worse.”

O’Malley says that, when this transition happens, those FI employees will also be out of a job unless the single replacement FI hires them. With concerns from both caregivers and those receiving care, they’re asking the governor to pump the brakes on this transition.

“The overhead itself, they want to break that down and try to streamline it. That’s fine but they don’t have to change the consumer end, we don’t have to feel this on our end,” Burroughs said.

New York isn’t making this change out of nowhere. CDPAP users have ballooned in the last decade, and spending has followed – reaching over nine billion dollars last year. The governor’s office believes with some administrative streamlining that number could be lower and those tax dollars could work harder.

“CDPAP is a critical program that empowers New Yorkers to choose their own care at home,” A spokesperson told News10NBC. “We’re committed to protecting home care patients, strengthening CDPAP and ensuring the program is sustainable for generations to come. Our reforms will help advance that goal by making sure taxpayer dollars are delivering for patients and their caregivers.”

The governor’s office says the change will also allow for more oversight, as the current entities are not legally responsible for supervising or scheduling caregivers, although some may choose to.

The transition currently has two major deadlines. The first is Oct. 1 — when the state hopes to sign a contract with the new single FI. The second date is April 1, when the office says the transition will take place.

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