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People who rely on home care program urge lawmakers to protect it from cuts in Hochul’s budget

Advocates, some of them using wheelchairs, lobby at the State Capitol on March 4, 2024, to restore health care cuts proposed by Gov. Kathy Hochul.
Karen DeWitt
/
New York Public News Network
Renee Christian, left, and other advocates lobby at the State Capitol on March 4, 2024, to restore health care cuts proposed by Gov. Kathy Hochul.

Renee Christian has a busy life, running a business in Buffalo as a health and wellness life coach and raising an 11-year-old daughter.

She also has cerebral palsy and receives home health care through New York’s Consumer Directed Personal Assistance Program. 

Christian, who uses a wheelchair, credits the program for giving her the support she needs to fully live her life. 

“It allows me to choose my home care 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.”

She’s 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.” 

But proposed cuts in Gov. Kathy Hochul’s budget might threaten that level of care. 

Hochul’s proposed budget would cut $1.2 billion from the program, decrease wages for downstate workers by up to about $2.50 an hour, and 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 and others, came to the Capitol this week to lobby lawmakers to restore the money. 

He said 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 said 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 said people like it — and more importantly, it works.

Hochul's budget director, Blake Washington, said 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 said the funds are needed for other health care needs, like shoring up financially struggling hospitals. He also said the program won’t be reduced for individuals with severe disabilities.

Assembly Health Committee Chair Amy Paulin said that her house, and the state Senate, will likely restore the cuts when they present their budget plans March 11.

Assembly Health Committee Chair Amy Paulin participates in an advocacy day on March 4, 2024, to restore home health cuts proposed in Gov. Kathy Hochul's budget.
Karen DeWitt
/
New York Public News Network
Assembly Health Committee Chair Amy Paulin participates in an advocacy day on March 4, 2024, to restore home health cuts proposed in Gov. Kathy Hochul's budget.

“I believe you're going to see some restoration, if not all, in the one-house budgets,” Paulin said.

Paulin said 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.”

Karen DeWitt is Capitol Bureau chief for the New York Public News Network, composed of a dozen newsrooms across the state. She has covered state government and politics for the network since 1990.