ROCHESTER, N.Y. — Since the pandemic, labor shortages have impacted families for years, and household supplies continue to be a challenge, leading many to turn to the Consumer Directed Individual Assistance Program (CDPAP) to get by on a day-to-day basis.
CDPAP is a health care program that provides essential, personalized care to New York’s elderly, sick and disabled residents in the comfort of their own home.
Heather and her daughter, Devyn Burrows, have been involved with the program for years.
“I’m really grateful for this program because it allows me to choose family and friends instead of an agency. If I sent strangers, they might not understand how Devin communicates or the special diet he needs to eat to prevent seizures. Having people in my home allows for personalization,” Heather explained.
Her daughter was born with a rare genetic condition called Argonaute syndrome, which means she was born without the AGO2 chromosome.
“There are only about 50 people in the world who have been diagnosed with this disease, so it’s really rare,” she explained. “She can speak and spell at a college level, but if you look at her, you don’t notice because she’s chewing on a chewy Curious George. She has chains jingling on her hands, so often it’s hard for her to figure out where her hands and feet are because of her motor skills, so a lot of people with a condition like hers always have something in their hands so they know where their hands are.”
Devin has delayed motor skills, difficulty speaking and suffers from silent, frightening seizures that require medication to treat.
“She’s very sensory – very sensitive to light, temperature, things like that – but the scary thing is her seizures. Most people think of a seizure as being violent, but she freezes, stops breathing and turns blue. They happen suddenly and she makes no sound,” her mother explained. “I can’t sleep, I can’t shower because she’s so demanding 24/7. I miss out on all the important things when I’m with Devin. He doesn’t want to be in the same places as us all the time.”
Heather is trying to give her 17-year-old son a chance at independence, and CDPAP has been a huge help in helping him grow. She is one of 250,000 New Yorkers taking advantage of the program.
“My daughter can’t even go to the bathroom by herself – I can’t imagine being 17 – so it’s important for her to decide who she stays with. She gets to decide who comes into the house and think about how embarrassing it must be for her as a young woman who is growing and maturing,” she says. “With more home support, at least they can do it while they can, but I’m not going to be here forever and we need to have a plan that works when I’m gone.”
“Consumer-Directed Personal Assistance is a type of home care that allows people to hire their own staff. Given the workforce shortage across home care, it certainly affects us, but it’s minimal due to the nature of the program. So we’re seeing more people joining because agency-based home care can’t meet their needs, so we’re their only option,” explains Brian O’Malley, executive director of New York Consumer Directed Action. “The program provides financial stability in a variety of ways, primarily by ensuring people have access to the home care services they need.”
He is part of a coalition defending CDPAP in the wake of Governor Hokele’s proposed changes that could alter how the program functions.
“When this came to light, obviously we looked at this and said it’s obviously bad for the agencies, that the industry doesn’t really care, but all the evidence points to the fact that this is also going to be terrible for the people who use this service and rely on it every day,” O’Malley said.
Hoekl is proposing to outsource the administration of the program, which currently has over 600 local companies operating it, to a single financial intermediary. According to the Governor’s Office, the Medicare program is expected to exceed $9 billion this year and is unsustainable in the long term, so the change is intended to focus on quality of service and strengthen oversight of the program. There is currently no intention to terminate or eliminate CDPAP.
“Tens of thousands of people will lose coverage. They will lose their home care workers or be left behind in the transition gap. We’ve seen similar phenomena in other states with much smaller populations of people using the system,” O’Malley explained.
Heather fears these changes will affect how her daughter’s carers are remunerated and accommodation is provided, which will have a negative impact on her daughter’s care.
“We’re very concerned that if their paychecks are cut off, we’ll lose even more caregivers,” Heather explained. “We’re trying to switch nearly a million caregivers to one company, and I don’t think any company can do that.”
She recently sent a personal message to Governor Hockle through a commercial that has been airing statewide since July, arguing for the program to remain the way it is currently run.
“My daughter, Devin, needs full-time home care to survive. Consumer-directed home care would help me continue working and care for my family. Now Governor Hockle is outsourcing New York State’s home care program to out-of-state contractors, bankrupting small businesses and forcing thousands into nursing homes – even Devin,” she said in the commercial. “Governor Kathy Hockle, my daughter’s life depends on this. Don’t let big corporations take over home care.”
But a spokesperson for Hawkle’s office told Spectrum News 1, “CDPAP is a critical program that enables New Yorkers to make their own choices about care in their home. We are committed to protecting home care patients, strengthening CDPAP, and ensuring the sustainability of the program. Our reforms advance that goal by ensuring taxpayer dollars effectively serve the patients who need it.”
The governor’s office has said it has not yet selected a fiscal intermediary but expects to make a decision by Oct. 1. Last month, Gov. Hokull told reporters at a press conference that the state may choose more than one fiscal intermediary to meet the looming deadline.
“Devin’s family in New York is the most at risk. Devin employs numerous caregivers and really relies on all of them being there when he needs them. Heather relies on their services being available, not only to make sure Devin is okay, but to make sure his other children are getting the care they need from their mother,” O’Malley explained. “Heather employs eight caregivers. One oversight can mean the difference between Devin’s entire health care system running smoothly or collapsing. It’s the difference between success and failure. And there’s no middle ground when it comes to in-home care.”
“I think we should have an opportunity to talk to you about this. We should have a listening session where stakeholders can give their input and share their concerns. We should know who the Department of Health is in contact with. We need a focal person to address our concerns, because right now we’re all talking to legislators and the media and that message is really getting diluted,” Heather said.
Hoekl’s office said the state’s upcoming reforms would leave eligibility requirements unchanged, participants would not have to reapply, and CDPAP caregivers’ wages would follow state and federal wage requirements for in-home care. Other states have made similar transitions, sparking controversy among officials and program administrators over whether they were handled efficiently.
“She is one of the most important people in the world to me, but she deserves more than me, and I will always be here,” Heather said.
