Families concerned by proposed changes to in-home caregiver program in New York

Gov. Kathy Hochul is proposing changes to the increasingly popular Medicaid-funded Consumer Directed Personal Assistance Program.

The changes could include eliminating what is called a designated representative for individuals who utilize a personal assistant, or caregiver, to perform daily tasks. The program allows Medicaid recipients to hire someone of their choosing to fill that role, and for individuals who aren’t able to make that decision themselves, the responsibility for hiring, managing and if needed, removing that individual from the position falls to the designated representative.

While the proposal is not included in either one-house budget, families impacted told Spectrum News 1 they are concerned ahead of negotiations.

Linda lives in Rensselaer County and is a designated representative for her daughter Amanda, who has a developmental disability. The family chose to hire Amanda's brother to serve as her caregiver. Without Linda, Amanda couldn't make the decision for herself, and Linda stressed that Amanda is most comfortable with her brother. 

“She might end up in a group home, because I’m getting older. I’m not able to do as much as I used to be able to do,” she said.

Jocelyn Arndt, business development specialist for the nonprofit Consumer Directed Choices, an organization that coordinates things like pay and benefits for those personal assistants, emphasized that eliminating designated representatives from the program could put thousands of New Yorkers like Amanda and their loved ones in challenging positions.

“These are folks who are determined to need care through Medicaid. They need services, and they have someone who is a trusted friend or relative or neighbor who are able to provide that care in a way that they are deciding,” she said.

At the State Capitol, lawmakers say the program is growing fast and has been the target of fraud, as well as accusations that unqualified individuals are assisting loved ones with medical needs and activities of daily living.

State Senator James Skoufis said a measured approach to reform is needed.

“On one hand, it’s a good thing. But on the other, there is fraud in the system,” he said. “That’s something that we need to do everything we possible can to root out, and the governor feels very strongly about that. I don’t want to see this program dismantled or anything remotely approaching a dismantling.”

Additionally, concerns have been raised about viral social media posts encouraging individuals who want their loved ones to age in place to enroll in the program to make money, even if they have no caregiving experience.

Assembly Member Alex Bores says that’s just one reason the program’s growth does need to be managed.

“We’ve all see the Tik-Tok videos of people saying, ‘How to get paid by the state,’ and that’s some portion of it. But I think some portion of the growth is people caring for their relatives, and when CDPAP is done, well, it's actually going to save the state money because the alternative is sending someone to a nursing home,” he said.

For people like Linda, there is concern managing that growth could have real-life consequences for them.

“I just want people to understand that this program means so much to me and people like my daughter,” she said. “It is a blessing to be able to be in a safe place, to know that people who are working with her love and understand her.”

As has been the case throughout budget negotiations, when asked for comment, the governor’s office provided the following statement:

“Governor Hochul’s Executive Budget makes record-setting investments in New York’s future while ensuring the state remains on a stable long-term fiscal trajectory, and she will work with the Legislature to craft a final budget that achieves these goals.”