April 1st was the original date when New York State Governor Kathy Hochul and the New York State Department of Health directed all Consumer Directed Personal Assistance Program (CDPAP) consumers and personal assistants to immediately transition to Public Partnerships LLC (PPL), the new statewide fiscal intermediary (FI). Within a few hours, PPL was besieged with phone calls and emails from personal assistants complaining about getting blocked from clocking in, paperwork still not processed, and consumer care getting delayed. On the bigger stage, the Memorial Day deadline for Congress to agree upon a domestic spending policy bill that includes cuts to Medicaid is looming.
Early last month, before the resolution passed both the House and Senate, Senate Majority Leader Chuck Schumer met with Medicaid advocates and experts in a Virtual Disability Town Hall to hear the firsthand experiences of people with disabilities about getting out of institutions and how Medicaid cuts put the disability community at risk.
Denise DiNoto, a community volunteer at The Rotary International Foundation in Rochester, New York, said she would not be able to engage in the world if she didn’t have Medicaid and access to homecare. The CDPAP user explained that she didn’t use Medicaid when she was growing up because her parents were blue collar workers. “But when I became an independent adult,” DiNoto said, “it was pretty clear to me that I was going to need help with personal care. I would not be able to stay at home without personal care.”
While breathing oxygen through her nose, DiNoto looked straight into her webcam and with a firm tone told Senator Schumer that she does not want to go to an institution. “We’re looking to you to be an example for us,” she said, “to be a fighter, to know that when we say we need this, you’re going to say, yes, we do, and you’re going to keep fighting for us.”
Judy Ginter, an advocate and peer mentor who also shared her perspective during the town hall, said that doctors told her she was a “pill seeker,” when in fact she was having symptoms of polyneuropathy, which affects all limbs, after falling out of bed and not being able to move one morning. After the incident, Ginter was admitted into a nursing home and released four months later with nowhere to go because the costs were too high. So, she needed to lean on Medicaid.
Now, Ginter’s home aide, who is provided by CDPAP, helps her cook and carry out other day to day activities. “I would not be here right now talking to you, Senator, if it were not for having aid services,” she concluded.
House Republicans have voted to cut $880 billion in federal Medicaid spending over 10 years and are also pushing for the House Agriculture Committee to cut $230 billion from the Supplemental Nutrition Assistance Program (SNAP), the country’s largest food assistance program for low-income Americans.
Senator Schumer, however, reassured the disability community and CDPAP users that he has and will always be on their side. “We’re at our best when we work as a team,” he said.
The Senator went on to provide a critical update about the budget reconciliation process, which is a special procedure that allows a bill to pass the Senate with a simple majority of 51 votes, meaning bipartisan support would not be needed. There are Republicans, the Senator said, “who are more moderate and they understand how politically damaging Medicaid cuts would be. We’ve had some senators come out and say they can’t support a bill that will kick people off Medicaid or cut benefits.”
Three New York House Republicans—Nicole Malliotakis, Nick LaLota, and Andrew Garbarino—recently signed onto a letter stating they “cannot and will not support a final reconciliation bill that includes any reduction in Medicaid coverage for vulnerable populations.”
To block the cuts and win the fight, Senator Schumer encouraged the town hall attendees to keep “telling your story to the media and on social media. Let Americans understand [that] Medicaid allows for people with disabilities to live full, free, and rich lives you’re entitled to.”
Medicaid is the main source of insurance for 5.4 million New Yorkers and provides home and community-based services (HCBS) for nearly 510,000 New Yorkers at a cost of nearly $40 billion. The passing of this bill could bring $6.7 billion in cuts for New York next year, according to the Commonwealth Fund. For people with disabilities, these cuts put HCBS at risk of being significantly reduced or eliminated.
Since day one of PPL’s takeover of CDPAP in New York, the Downstate New York chapter of the advocacy group ADAPT has held multiple rallies outside of Governor Hochul’s office in midtown Manhattan to protest her further restrictions on the lives of disabled New Yorkers who rely on Medicaid services. They are active online, aligning with Senator Schumer’s advice to make it impossible for both Governor Hochul and federal leaders “to ignore the human cost of these cruel policies,” as they said on their social media pages. “Blood will be on this state’s hands.”