Rochester, NY – [March 18, 2025] – An arbitrary deadline that will leave tens of thousands of Disabled people across the state without personal assistance services is fast approaching. Despite repeated requests of the Democrats in the state legislature, the Rochester delegation has failed to take action on a delay that has been requested by the network of Independent Living Centers, Medicaid Matters New York, and New York State AARP.

“At this point, there is no question that thousands of Disabled people will find themselves without assistance,” said Max Rodriguez Manager of Government Affairs for the Center for Disability Rights. “That means Disabled people won’t be able to meet their basic needs, including assistance with getting in and out of bed, toileting, eating as well as health related tasks including getting medication and support with a ventilator.”

The response from state Democrats in elected office has been dismissive and disappointing. The ILC network met with representatives for Governor Hochul to ask that her administration extend the phase in period of the transition. Instead of listening to their concerns, the decision-maker from the Hochul administration cut off an ILC Executive Director who was explaining the -group’s concerns and told the ILC representative to “stop talking.” After chiding the ILC representatives, the Hochul administration staffer eventually added, “There is no appetite for a delay in this office.”

Even worse, Assembly Speaker Heastie dismissed the concerns of advocates who were telling him that Disabled people who don’t have personal assistance services will face serious health consequences and may die. The Speaker responded that there is always “collateral damage” when making these policy changes. Instead of meeting with Disabled advocates, the Speaker ran away from them while the Assembly Sargeant at Arms blocked their access to the Speaker. The Speaker’s Office has refused all requests to meet with advocates.

“We know that non-disabled policy makers tend not to value Disabled people’s lives,” said Kenyatta DaCosta, Chair of the Board for the Center for Disability Rights. “Hundreds of thousands of Disabled people in institutions needlessly died during the pandemic, and more than 14,000 of them were in New York, but casually dismissing us dying as ‘collateral damage’ is just disgusting. I don’t understand why our local delegation isn’t speaking out and pushing back on that. I expected more from Assemblyman Meeks, Assemblyman Bronson, and Senator Brouk. Don’t they think our lives matter?”

The impending deadline – established in statute as part of last year’s budget – makes it illegal for any of the current fiscal intermediaries to support Disabled individuals and all existing contracts and authorizations are being terminated in accordance with state law. “That means there won’t be any safety net,” said Rodriguez. “If a Disabled individual or their attendants are not fully registered with the new Statewide Fiscal Intermediary, they just won’t get assistance.”

Although the Hochul administration has blamed the current network of fiscal intermediaries – and the Disabled people themselves – for the delays, the new system is bottlenecked. “We were only able to enroll a handful of people yesterday because the online system crashed,” said Tammy Papperman, Vice President for Consumer Directed Personal Assistance Services. “People tried for hours yesterday.”

CDR has been urging our elected representatives in the state legislature to take action. “The deadline was established in law by the legislature and Governor,” said Dawn Russell, Vice Chair of the CDR Board. “The process starts with the legislature passing a bill to rectify this.” Some legislators have argued that there is no point in trying to advance legislation. Even if they can buck Assembly leadership to move a bill and get it passed in the Senate, the Governor will just veto it. Russell responds, “They were elected to legislate. They still have a responsibility to represent their constituents and act. They are quick to complain about Republicans in Congress for failing to act, but they really need to good long hard look at themselves.”

CDR has become increasingly concerned that Disabled people losing services is the intended policy goal, particularly as unexpected costs – from Disabled people transitioning to more expensive forms of home care and the funds that the Hochul administration needed to channel through the managed care organizations to prepay for people’s services through the Statewide Fiscal Intermediary – have wiped out any savings that the Statewide Fiscal Intermediary proposal would have otherwise generated.

“We have been telling state officials – including our local representatives – for weeks that Disabled people will go without services and some will get sick and die. My peers are lamenting the fact that these policy makers don’t seem to understand what is happening. I see it differently,” said Bruce Darling President and CEO of the Center for Disability Rights. “It looks like the policy makers are banking on the savings associated with Disabled people no longer receiving services. Bluntly, dead Disabled people don’t cost the state anything. That appears to be how the state intends to save money. I challenge our local delegation to prove me wrong, and more importantly urge them to take action before it is too late.”