Disability Community Concerned CDPA Program Will Be Impacted By NYS Medicaid Overhaul


(WXIR-Rochester) Governor Cuomo’s crack team of twenty-one experts has just one month to come up with a plan to overhaul New York State’s Medicaid Program.

The governor has tasked the so-called Medicaid Redesign Team with finding $2.5 billion in savings without impacting the the state’s 64 million Medicaid beneficiaries, or relying on local governments as funding sources.

It’s a tall order, and as part of its charge, the team is holding hearings across the state to get public input.

But some advocates question whether everyone’s voices are being valued equally in that process.

"It's just been fraught with issues," says Kathryn Carroll, Interim Advocacy Director at the Center for Disability Rights. "You can't give disabled people less than 24 hours notice and expect people to be able to turn up and talk about the programs that mean our lives."

At Wednesday's hearing in Rochester, the public had less than a week's advance notice, but many disability rights advocates still came out to urge the Governor’s team to leave one program in particular alone: the Consumer Directed Personal Assistance, or CDPA, program.

"It's a particular long term service and support benefit that allows disabled people to hire, manage, and fire our own attendants," Carroll explains.

For people who need help with everyday tasks like getting out of bed, bathing, or checking a ventilator, the program allows them to hire someone they know, often a family member.

"It's an alternative to the traditional home care model where you get connected with a home care agency and they just send someone to fill the hours to work with you," Carroll says.

"We feel very strongly about [CDPA] because it's the only program that was designed by and for disabled people. It is really tied into our independent living philosophy."

Kathryn Carroll says the disability community is pro-actively speaking out in defense of CDPA, because it’s one of the programs the Governor has singled out as a major driver of increased Medicaid spending.

Cuomo’s 2020 budget brief notes that spending on long term care generally increased by 300 percent over the last 6 years.  And, as part of that, Medicaid spending through the CDPA program increased by 85 percent between 2017 and 2018 alone.

But Carroll says the programs are growing because they’re popular among people with disabilities as well as the aging the elderly, and that this in itself isn’t a bad thing. Nor is it unexpected.

Carroll believes the current budget shortfall is partly a self-inflicted problem caused by a cap the state imposed on Medicaid back in 2012.

"We want reconsideration of the Global Medicaid Cap to actually take into account the realities of Medicaid benefit usage," she says, noting that the increased use of services by the state's aging population is foreseeable.

"So we have to look at the way the cap is formulated, or get rid of it altogether."

Public forum or no public forum, Carroll says she’s not hopeful that Cuomo will hear her and other advocates on these issues. But she is encouraged by the coalition of groups that has emerged over the last several weeks to advocate for expanding access to Medicaid.

"It has been encouraging to see the diversity of groups who've been showing up for expanding Medicaid coverage, making sure our immigrant population is covered, ensuring people have adequate housing, the concerns of the disability community... there are so many coalitions that are showing up to talk about just how meaningful a robust Medicaid program is," Carroll says.

February 21st is the deadline to submit public comments to the Medicaid Redesign Team. They are set to draft and finalize its recommendations by mid-March.


DARIEN LAMEN is news producer/director for WXIR Community Radio. He can reached at wxirnews@gmail.com