ROCHESTER, N.Y. – CDPAP allows people to get critical care and remain in their homes. It allows their parents or spouses to be their caregiver and get paid to do it.

Amendments to the governor’s proposed budget eliminates a position that would disqualify 40 percent of the people who rely on it.

“If we eliminate 40% of the people eligible for CDPAP, on October 1st, that’s 100,000 people,” said Bryan O’Malley, executive director of Consumer Directed Personal Assistance Association of NY.
 
What he said is why parents pushed back at the United Way in Rochester Tuesday. Heather Pereira uses CDPAP to save her daughter’s life.

“Her CDPAP attendants don’t sleep at night,” Pereira said. “They watch her and make sure she’s breathing and that she is okay.”
 
The governor’s staff says CDPAP is too big and too expensive. In eight years, it’s grown 1,200% with little oversight and costs $6 billion.

They wrote “With healthcare costs continuing to escalate, Governor Hochul is committed to protecting taxpayer dollars any way we can. That includes common sense fixes to CDPAP.”

The cut parents are most panicked about is the elimination of Designated Representatives or “DRs” as they’re called. DRs are unpaid but make decisions when the patient can’t. For patients who cannot direct their care, DRs are required.

The governor’s budget amendment put DR’s in brackets and brackets is state budget language for getting cut.

Sarah Behan, who lives with severe birth defects, has a DR. Her mom is her caregiver through CDPAP.

Berkeley Brean: “And without that DR, as they’re called, then Sarah no longer qualifies for the program.”
Doris Behan, mother: “Correct.”
Berkeley Brean: “And the money… goes away?”
Doris Behan: “Exactly.”
  
Doris Behan was one of the remote speakers at Tuesday’s event at United Way. When I was at her home Monday, Behan wanted the governor to hear her voice.

“I want her to look at this as a human being, not just dollars and money,” she said.

The budget deadline is April 1st.

The state health commissioner wasn’t questioned about cuts to CDPAP when he testified at the legislature’s budget committee in January because the proposed cuts weren’t published until February.