Governor Kathy Hochul is proposing budget cuts to a popular home health care program that allows people with disabilities and the elderly to live at home and have more say in who cares for them. People who depend on the program say it’s vital that the legislature reverse those cuts.
Renee Christian, who has cerebral palsy and who uses a wheelchair, receives home health care through New York’s Consumer Directed Personal Assistance Program. It allows a person with a disability or an elderly person to self-direct their own care. They can hire — and fire — workers, as long as they adhere to certain rules to keep everyone accountable. She says the program allows her to live her life. That includes running a business as a health and wellness life coach and raising her 11-year-old daughter.
“I have consumer direct homecare. And it allows me to choose my homecare workers and choose when they work and how they work,” Christian said. “So it gives me that freedom to really dictate my care and what it looks like.”
Christian is allowed 17 hours of care a day under the program.
“There's a lot of care,” Christian said. “And I need it because I need assistance to go to the bathroom, to shower, to eat, things like that. Which is basic daily living.”
Governor Hochul, in her budget, wants to cut $1.2 billion from the consumer directed care program. She would decrease wages for downstate workers by up to around $2.50 an hour. And she would exclude around 100,000 New Yorkers from using the program to manage care for a parent with dementia or a child with a disability. The governor is also proposing that the maximum number of daily hours of care be reduced, by an unspecified amount.
Bryan O’Malley runs Consumer Directed Action of New York State, which advocates for the consumer-directed programs. He, along with Christian, came to the Capitol to lobby lawmakers to restore the money. He says the cuts- caught him by surprise.
“It came as a shock,” O’Malley said. “These are all new proposals, for the most part. And there was no sign of anything new coming on this.”
He says the program has been expanding in recent years as the population ages. And the home care industry continues to face staffing shortages. But O-Malley says people like it, and, more importantly, - it works.
Hochul's budget director, Blake Washington, says the consumer directed program has grown by 1,200% over the past eight years, and it's becoming more difficult to afford.
“The spending trends to manage long term care are alarming,” Washington said. “For us, it was a hard call.”
But he says the funds are needed for other health care needs, like shoring up financially struggling hospitals.
And Washington says the program won’t be reduced for severely disabled individuals.
Assembly Health Committee Chair Amy Paulin says that her house, and the state Senate, will likely restore the cuts when they present their budget plans March 11.
“I believe you're going to see some restoration, if not all, in the one house budgets,” Paulin said.
Paulin says New York could also save money by eliminating home care services managed by insurance companies. She’s sponsoring a bill to do that.
Renee Christian is still worried. She grew up in a nursing home, and does not want to go back to a facility or a group home where she might have to give up her daughter.
“We have to come together as a society and decide that care matters, and that it's important,” Christian said. “And that people deserve whatever level of support that they need.”
