In an effort to engage consumers, personal care assistants and stakeholders about the threats to Consumer Directed Personal Assistance (CDPA), representatives from the Consumer Directed Personal Assistance Association of New York State ( CDPAANYS ) are traveling statewide on a #SaveCDPA Listening Tour. The goal is to discuss recent policy changes, hear from the public, and generate solutions for maintaining essential services for people with disabilities.
With New York State’s annual budget process now underway, the fear of service cuts is growing. At a listening session on December 10 at the Lesbian, Gay, Bisexual & Transgender Community Center in Manhattan, CDPAANYS Executive Director Bryan O’Malley noted that CDPA—a Medicaid-funded program that people with disabilities, including recently passed ICS Senior Vice President of Advocacy and Women’s Health Marilyn Saviola, fought for in the 1970s—is essential for many New Yorkers to live independently.
CDPA allows people with chronic illnesses and physical disabilities to hire, train and supervise their own caregivers. Medicaid pays the caregivers for their services through a fiscal intermediary (FI), an organization responsible for handling administrative costs of the program such as management of employee benefits, payroll and tax processing. CDPA is the only program of its kind. It was created with the input of people with disabilities because home care agency aides are prohibited from providing certain types of services and care that many people need in order to live independently.
“The program has been growing astronomically,” O’Malley said. This makes sense because New York’s population is aging rapidly. Despite this, the State has set its sights on reducing what it spends on the program.
CDPA updates in New York
In September, New York State Gov. Andrew Cuomo’s budget took effect, cutting $75 million from the CDPA program by changing the way it pays FIs. CDPAANYS—which represents FIs—and Centers for Independent Living across the State filed a lawsuit alleging that the new reimbursement structure would bankrupt the FIs.
In a significant ruling in October, Albany County Supreme Court Justice Christina Ryba said that the New York State Department of Health violated the New York State Constitution as well as the New York State Administrative Procedure Act (SAPA) when it instituted a new Medicaid reimbursement structure for CDPA. Judge Ryba declared the new reimbursement structure null and void, directing the department to reinstitute the previous structure. While the ruling was a victory, the State has filed a notice of appeal.
“Cuts to FIs is an issue. Caring for someone in the community is much less expensive than providing those services in a nursing home,” said O’Malley, who also discussed the state’s Global Cap on Medicaid spending and its failure to assess the cost of Medicaid for New York’s rapidly aging population.
“The State had an obligation 20 years ago to start planning for the baby boomers,” O’Malley said. “They didn’t. It’s none of our faults, but the State is making it our problem.”
CDPAANYS calls for action
O’Malley encouraged everyone at the listening session to speak to the media, share CDPAANYS information on social media and to visit their local legislators to raise concerns over CDPA cuts. CDPANNYS will also be hosting an Advocacy Day on Monday, February 10 in Albany to protest Governor Cuomo’s cuts.
“We want to help empower you all to get to a point where you can take action,” O’Malley said.
ICS members talk #SaveCDPA
ICS member Iffat Mahmud applauded CDPAANYS for the listening session, and stressed how crucial it is for people with disabilities to remain informed about CDPA developments.
“These meetings have to continue,” Iffat said. “Nursing homes are a deathtrap. People with disabilities needs services, not cuts in the budget.”
ICS member T.K. Small called CDPAANYS a strong voice on consumer direction, and said that with the State budget process fast approaching, people who utilize CDPA have to come together and call for change.
“This program is important, and we need to let the politicians know they can’t cut it without consequences,” T.K. said.
ICS member and BCID employee Jessica De La Rosa—who recently penned an amNewYork piece about CDPA and how it has supported her mother and thousands of New Yorkers—echoed those sentiments. She said that CDPA is important now, and for those who will need services in the future.
“Our care is important to us,” Jessica said. “I just want us to be able to continue living our lives the way we want—independently.”
For updates on the #SaveCDPA Listening Tour, visit cdpaanys.org.