A disability rights group says New York's plans to change a home care program could be harmful

After 35 years as a nurse, Mary Mann left her job at Highland Hospital to care for her daughter, Claire, who has a rare neuro-genetic disorder called Angelman Syndrome.

“I loved my job. I loved what I did, but I love my daughter more,” Mann said.

She and her husband eventually turned to The Center for Disability Rights to assist with their daughters’ at-home care services.

For the past 25 years, the center has served as a fiscal intermediary through the state’s Medicaid-funded Consumer Directed Personal Assistance Program. CDPAP pays for people with disabilities to hire home care providers and live independently.

Family members can serve as those providers as well.

“Group homes are closing. Nursing homes are backed up," Mann said. "We don't want our loved ones in a facility. We want them at home with us, that's why we are fighting.”

The Manns are for CDR to keep the Medicaid funding it receives to administer CDPAP.

The state plans to change its model for the program and has tapped a for-profit company, Public Partnerships LLC (PPL), to administer the program across New York State. It will then subcontract with home care agencies statewide.

Disabilities Beat: NYS Consumer Directed Personal Assistance Program will be run by one business

Emyle Watkins

One major change came at the last minute in New York State's Budget negotiations? The Consumer Directed Personal Assistance Program, or CDPAP, will move from being administered by hundreds of organizations to only one.

Listen • 8:10

CDR officials said that change could mean a loss of more than 80% of the center's revenue, which could mean people receiving home care through the center may lose it, and about 800 people could lose their jobs.

“We're not talking about your neighborhood plumber who you're going to see once a year,” said Susan Stahl, a longtime disability advocate who has worked with CDR.

“I'm talking about the person who helps you in the bathroom. I'm talking about the person who cooks your dinner. Does all those intimate things that you don't even do with your wife or your husband.”

Mann said the assistance her family has received through CDR cannot be duplicated.

“If it's not broke, don't fix it,” Mann said. “Go after the ones that aren't doing what they should be doing, and not the ones that are providing the most support possible.”

The center is also calling on local legislators to help push their cause.