ROCHESTER, NY — Consumers and caregivers are raising alarm about major changes coming to New York State’s Medicaid program.

It’s called CDPAP, the Consumer Directed Personal Assistance Program. If you have a disability or chronic illness, CDPAP allows you to choose your caregivers and pay them through Medicaid.

In this year’s budget, Gov. Kathy Hochul proposed an overhaul of the program, but News10NBC spoke with caregivers and recipients who say the change will throw the health care system into chaos.

“You either go home or you get stuck, you get stuck in the hospital if this program doesn’t exist,” said Heather Burroughs, whose daughter uses CDPAP.

Burroughs has been using CDPAP for over a decade for her 17-year-old daughter, Devyn. Devyn has a rare genetic disorder. She doesn’t speak, has delayed motor skills and suffers life-threatening seizures, sometimes in her sleep.

“I don’t know about you, but I need to sleep. So we realized very quickly that we needed support at home to keep Devyn home,” Burroughs said.

Devyn now has eight caregivers who take turns looking after her around the clock. Some are long-time friends, and the third-party company that handles her payments is run by a friend in town. There are around 600 of these so-called financial intermediaries across the state. But on October 1 of this year, they are on the brink of collapse.

“There is no transition plan and no money allocated for the transition,” said Bryan O’Malley, who represents a nonprofit that supports these financial intermediaries. “And we know that this will 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 these FI workers will also be out of work in this transition unless the only replacement FI hires them. Given the concerns of both caregivers and care recipients, they are urging the governor to slow down this transition.

“The overhead itself, they want to break down and rationalize. That’s fine, but they don’t have to change anything on the consumer side, we don’t have to feel that,” O’Malley said.

New York is not making this change out of thin air. CDPAP spending last year was over $9 billion. The governor’s office believes that with some administrative streamlining, that number could be reduced and taxpayer dollars could be better spent.

O’Malley says they want the state to hit the brakes and actually talk to CDPAP stakeholders now before implementing changes.

He says October 1 is an aggressive timeline. You’ve heard Burroughs say she’s not opposed to change, she’s just very afraid that a hasty rollout could jeopardize care for her daughter and tens of millions of our most vulnerable New Yorkers.

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