Disability advocates fear New York will cut key home care program – Mother Jones

New York Governor Kathy Hochul during a press conference.Sipa VS/AP

End of April, New York Democratic Gov. Kathy Hochul and state lawmakers have finalized a $233 billion budget for the next fiscal year. One item in the 144-page official summary has raised fears among disability advocates: dramatic changes to a vital home care program that could push more people into nursing homes.

A quarter of a million New Yorkers currently use CDPAP, a highly popular program launched in 1995 that provides Medicaid funding for home caregivers chosen by patients at times of their choosing. Participants spoke with Mother Jones about how the program enables them to remain in their communities, rather than be institutionalized — a cause central to disability rights activism. Without access to workers who understand their needs, such as helping people with spinal cord injuries use the bathroom, these participants are at risk of hospitalization, placement in restrictive long-term care, or both.

The program is implemented through “fiscal intermediaries,” who provide financial and administrative oversight; some specialize in helping certain groups, such as the Bengali immigrant community. Hochul’s plan would turn the program into an administrative monopoly: In October, a single intermediary, possibly a for-profit out-of-state company, would have a $40 billion contract covering all 250,000 participants in the state. In late July, several current intermediaries sued the New York City Department of Health and Human Services over the changes.

“This was a backroom deal that was done days before the final budget,” 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 the disability community.”

Hochul has been fiercely critical of CDPAP, calling it a “racket” and “one of the most abused programs in the entire history of New York State.” But 2022 audits by the state’s Medicaid Inspector General reviewed $37 million in claims — and found 99 percent were accurate. Of $46,000 in documented overpayments, $41,000 was recovered. Hochul’s office did not respond to a request for evidence the program was abused.

Getting care through CDPAP can be tough enough. For Laura Mauldin, a graduate student when she applied in 2010, it took nine months—and an initial rejection—before her partner, who had been sick with cancer for four years, was approved for support.

“There was no option to check for CDPAP” on home health care applications at the time, Mauldin said. The request for 24-hour care was eventually approved, allowing Mauldin to move out of her apartment, with her partner in the care of a worker, but so late that Mauldin’s partner was able to use it for only three months before he passed away.

Critics like Hochul see the potential for corruption in allowing disabled people to hire family members — something Kendra Scalia was the first to do when she hired her sister while she was in college.

“I felt very vulnerable to hire strangers or welcome strangers into my dorm room where there’s no supervision,” said Scalia, whose brother has now worked as her aide for the past decade.

Some health care providers feel like they’ve been left in the dark about how Hochul’s changes will affect them. For the past 25 years, Tara Murphy has worked as a home health care provider through CDPAP, after working as a certified nursing assistant in a nursing home. As a home health care provider, Murphy felt she could better serve people.

“I saw all the horrible things and the lack of care and the neglect that was happening,” 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 the looming changes to the program that helps her find work. She doesn’t know whether she’ll be hired under the new monopoly, or whether her pay will be cut. “I sit here every day,” Murphy said, “thinking, ‘Am I going to have a place to live? Am I going to have food?’

1199SEIU, the main labor union for health care workers in New York, has been critical of the growing role of for-profit companies in the program. Helen Schaub, the union’s interim political director, said administrative costs have skyrocketed since a 2012 jump in the number of for-profit brokers. One of the largest home health brokers in New York, Schaub pointed out, is run by the embattled insurance giant Anthem.

Some users of the program who have Mother Jones They also worried that pay cuts would force their employees to look for work elsewhere, putting both patients and employees in a difficult position.

Lacey Tompkins, who works in advertising in New York City, says CDPAP has allowed her to maintain a partially remote job as a disabled worker, with assistance getting to work, even though her hours can change from week to week. “I can make my own decisions and I don’t have a set number of hours,” Tompkins says.

Advocates with varying viewpoints agree on one thing: Hochul’s six-month timeline for transforming the program is unreasonable and impractical. “Every serious company that bids on the job believes that, because it’s a very daunting task,” SEIU’s Schaub said. “Privately, people in the (Hochul) administration have said, ‘We know it can’t happen on that scale.'”