New York Governor Kathy Hochul at a press conference.Sipa USA/AP
End of April New York’s Democratic governor, Kathy Hochul, and state lawmakers have approved a $233 billion budget for the coming fiscal year. One item in the 144-page official summary has raised concerns among disability advocates: dramatic changes to a vital home health program that could push more people into nursing homes.
A quarter of a million New Yorkers currently use CDPAP, a widely used program launched in 1995 that provides Medicaid funding for home care workers of patients’ choosing at times they agree on. Participants spoke with Mother Jones about how the program allows them to stay in their communities rather than being institutionalized – a central concern of disability rights activism. Without access to staff who understand their needs, such as how to help people with spinal cord injuries use the toilet, these participants risk hospitalization, placement in restrictive long-term care, or both.
The programme is implemented by ‘financial intermediaries’ who provide financial and administrative oversight. Some specialise in supporting specific groups, such as the Bengali immigrant communityHochul’s plan would turn the program into an administrative monopoly: By October, a middleman – possibly a for-profit company from another state – will hold a $40 billion contract covering all 250,000 participants in the state. In late July, some of the current middlemen sued the New York Department of Health over the changes.
Hochul was extremely critical of CDPAP, calling it a “fraud.”
“This was a backroom deal that happened days before the budget was finalized,” said Kendra Scalia, a disability policy analyst and board chair of the Consumer Directed Personal Assistance Association of New York State, which supports both CDPAP providers and recipients. “It was never discussed with disability communities.”
Hochul has been highly critical of CDPAP, calling it a “scam” and “one of the most abused programs in the entire history of New York State.” Yet audits by the state’s Medicaid inspector general in 2022 reviewed $37 million in claims – and 99 percent of them were accurate. Of $46,000 in documented overpayments, $41,000 was recovered. Hochul’s office did not respond to a request for evidence of abuse of the program.
It can already be difficult to receive benefits through CDPAP. Laura Mauldin, a graduate student, took nine months to apply in 2010—and was initially denied—for her partner, who had been battling cancer for four years, to be approved for benefits.
“Back then, there was no option to check for CDPAP on applications for home care,” Mauldin said. The application for around-the-clock care was eventually approved – Mauldin was able to leave her home and leave her partner in the care of a caregiver – but so late that Mauldin’s partner was only able to use the care for three months before she passed away.
Critics like Hochul see potential for corruption in the fact that disabled people can hire family members – something Kendra Scalia first did when she hired her sister while she was in college.
“I felt really vulnerable hiring strangers or welcoming strangers into my dorm room where there was no supervision,” Scalia said. Her brother has worked as her assistant for 10 years.
Some nurses They feel they are being left in the dark about how Hochul’s changes will affect them. For the past 25 years, Tara Murphy has worked as a home care worker through CDPAP after previously working as a certified nursing assistant in a nursing home. As a home care worker, Murphy felt she could better help people.
“I saw all the horrible things, the lack of care and neglect that were happening there,” said Murphy, who lives in Troy, New York. “I knew I couldn’t change it, and I didn’t want to be part of the medical mafia.”
Now Murphy is panicking about impending changes to the program that gives her employment. She doesn’t know if she will be hired under the new monopoly or if her pay will be cut. “I sit here every day,” Murphy says, “and wonder, ‘Will I have a place to live? Will I have food?’
1199SEIU, New York’s largest health care workers union, has criticized the growing role of for-profit companies in the program. Helen Schaub, the union’s interim political director, said administrative costs have skyrocketed since the number of for-profit brokers increased in 2012. One of the largest home care brokers in New York, Schaub said, is run by controversial insurance giant Anthem.
Some users of the program who are using Mother Jones also expressed concern that pay cuts might force their helpers to look for work elsewhere, which would put both patients and staff in a difficult position.
Lacey Tompkins, who works in advertising in New York City, says CDPAP allows her to work partially from home as a disabled worker and that she gets help getting to work despite the work schedule varying from week to week. “I can make my choices and I don’t have set hours,” Tompkins said.
Advocates with differing views agree on one point: Hochul’s six-month timetable for revamping the program is unreasonable and impractical. “Any serious company bidding for the work believes that, too, because it’s a very daunting task,” said Schaub of the SEIU. “Privately, people in the (Hochul) administration have said, ‘We know this is not possible on this scale.'”
