Here’s how 1199 worked with New York State to protect a program serving hundreds of thousands of caregivers and those they care for from greedy middlemen.

People in New York State who provide consumer directed care to those who need it have been receiving wages through the Consumer Directed Personal Assistance Program (CDPAP) since 1995.

The program has allowed thousands of individuals, including many with disabilities who rely on Medicaid to live independently and with dignity in their own homes, with the paid support of a caregiver of their choice.

In 2012, in an attempt to save money, NYS privatized the home care system through managed care. But instead of cutting costs, in CDPAP, middlemen agencies began extracting billions of dollars in profit out of the tax-payer funded CDPAP home care system. The program grew to cost over 9 billion dollars a year.

In 2024, Governor Hochul and the Legislature enacted a reform intended to simplify the program and save monies that had been spent by 700 different middle men agencies.

Thousands of the CDPAP caregivers have organized with 1199 in recent years. Once the reform is complete, after April 1, 2025, our Union hopes to be able to talk to the over 250,000 workers in the CDPAP program in NYS about how being part of our Union can make their work and the lives of the consumers they serve better.

Delmy Lopez has looked after her parents for the past four years under the CDPAP program in the Bronx. She started out helping her father, then when he transitioned to an independent living facility, her mother became ill and needed more help.

“There are a lot of irregularities with the agency who signs my checks now,” says Lopez, and that is why she signed a card stating her intention to vote “yes” on a union ballot for 1199.

For example, the agency required her to prove that she was vaccinated against COVID and the flu. But because she did not immediately send in the documents, they were continuing to withhold seven days pay for work she completed after she was vaccinated. “It is an abuse of authority. They have robbed a week of work from me. I cannot get a hold of them on the telephone to explain the problem,” she said, “That is why I need a Union organizer to have my back.”

Lopez knows her rights. Before joining the CDPAP program, Lopez was a home care worker for 18 years.

As of January 6, the new fiscal intermediary, known as PPL began reaching out to consumers in the CDPAP program to start the transition process, which is expected to be complete by March 28.

In an unusual step, Dr Jim McDonald, the NYS Health Commissioner, created a public service video to reassure the public.

“I’m here to respond to lies being spread about the future of home health care in NY. There are businesses pushing a misinformation campaign to protect their own profits. It is meant to scare you into thinking that New Yorkers will lose access to home care. That’s false. Your Governor and I would never let that happen.

“Our plan will protect New Yorkers who rely on home care. It will protect vulnerable people from businesses that haven’t played by the rules. And it will protect taxpayers from middlemen that have abused Medicaid funding. If you’re a CDPAP home care user, you can keep your trusted caregiver. If you’re a caregiver, it will be easier for you to get paid. New Yorkers will get better care and better service at a better price. That is the truth.”

Currently working with the Accent Care agency in the CDPAP program, Colin Vassell, says he is ready to sign a card with 1199. Before joining Accent Care two years ago, he worked with the White Glove home care agency which unionized with 1199, shortly after he left.

He currently looks after a 13-year-old boy with autism on the weekends for 20 hours a week. He was recommended for the job by a friend of his mother’s.

“I know that power lies in providing quality care and strength. As workers we need a voice to bargain for better conditions. Coming together is the best way to look after ourselves.”