A group of the Center for Disability Rights’ own activists have made history on Thursday as they occupied the Capitol building’s War Room overnight, marking themselves as the first group to remain inside overnight other than government officials or staff. All of the protestors in this action risked arrest to participate and have directly influenced New York State policy-making in their historic action. Through discussions with disability activists from CDR and representatives of 1199SEIU, a budget proposal that would have devastated Independent Learning Centers [ILCs] providing CDPAP is being reconsidered to protect these crucial programs, giving disabled New Yorkers a choice in receiving their care. This incredible result was achieved through the hard work, dedication, and loyalty of the disability community, and while the fight is far from over, we at CDR want to thank our employees who bravely demonstrated in Albany last Thursday. With the fight far from over, we also intend to return to Albany both today and throughout the week until our voice is heard and ILCs and CDPAP are protected.

Why CDR Took To Albany

When our activists arrived in Albany on Thursday morning, Governor Hochul and Speaker Heastie’s proposed budget would have removed ILCs as fiscal intermediaries for CDPAP, a program that allows disabled individuals to remain at home and select their own caregivers, usually friends or relatives. Instead, the proposed budget would have positioned PPL, Inc., a for-profit corporation, as the sole fiscal intermediary for the program. PPL Inc. has shown themselves to be irresponsible in managing similar programs in the past: as stated by CDR Board Vice Chair Dawn Russell, “I have watched that company drive other Disabled folks into institutions or go without service. I wouldn’t wish this on my worst enemy.” With PPL, Inc. positioned to take over as the sole fiscal intermediary for these critical programs, endangering the safety and lives of those dependent on CDPAP, we at CDR determined something had to be done.

What Happened At The Capitol?

Disability activists with CDR and other NYS ILCs took to the War Room of the New York State Capitol building late Thursday morning with the understanding that all were likely risking arrest by demonstrating. However, despite protestors being warned shortly before 7:00pm Thursday night that they would be charged with trespassing, no arrests were made. Activists instead were allowed to remain in the War Room overnight, marking the first time any group outside of Capitol staff or elected officials would have done so. Activists were not permitted to have food brought in, and slept on either benches, the floor, or in their power chairs.

This unprecedented action prevented the budget proposal from being heard in its existing form; Governor Hochul did not engage with our protestors and did not come to work on Friday, pushing the fight into this week. While clearly demonstrating Governor Hochul’s unwillingness to support the disability community in our rejection of this budget proposal, as well as her hesitance to engage with the community directly, this refusal to engage with CDR’s protestors allowed time for negotiations on the proposal between ILCs and 1199SEIU that would protect CDPAP and consumers.

Discussions with 1199SEIU

As disability activists were staging their unprecedented sleep-in in the Capitol overnight, CDR CEO and President Bruce Darling spoke with representatives of Service Employees International Union (1199SEIU) to discuss details of the budget proposal, aiming to find a compromise that would be best for both caretakers and consumers. After negotiation late into the evening, a version was drafted with language that would satisfy both the concerns of 1199SEIU and ILCs. Rather than consolidating administration of CDPAP under a single for-profit entity, consumers would be allowed a choice between ILCs or PPL as a for-profit option. The language of this proposal preserves ILCs as fiscal intermediaries while also addressing the needs and concerns of the labor movement, and we at CDR are happy to have found common ground with 1199SEIU. 1199SEIU released the following statement about the budget proposal and the need to protect ILCs:

“Reform in the Managed Long Term Care program is long overdue. Our vital Medicaid dollars should be spent primarily on New Yorkers who need care and the workers who care for them, not insurer or provider profit. Eliminating wasteful administrative spending is a much better way to save taxpayer dollars than cutting caregivers’ wages or reducing the hours of home care consumers. As budget negotiations continue, the Governor and legislative leaders must protect the Independent Living Centers and Concepts of Independence who play such a vital role supporting home care consumers. This, as well as other reforms to ensure that consumers and workers have a greater – not lesser- voice in home care, will return the program to its roots as a key support for independence and dignity. […] We stand in solidarity with the disability community and mission-driven providers in demanding care before profit.”

“Our union worked closely with Independent Living advocates to craft language that preserves this important network as fiscal intermediaries and ensures that consumers have a choice. We call on the legislature and Governor to follow the lead of labor and disability advocates and preserve the heart of this vital program while eliminating wasteful spending on profit and excess administrative costs,” said Helen Schaub.

What Happens Now?

Unfortunately, the fight to protect ILCs as fiscal intermediaries for CDPAP is not yet over. Despite ILCs and 1199SEIU having settled on language that would satisfy both parties, Governor Hochul and other elected officials have yet to support the new drafted version of the budget. While many Assembly Members are currently in support of the collective will of ILCs and 1199SEIU, the current version of the budget being quickly rushed through still contains the old language that would not protect ILCs as fiscal intermediaries. Elected officials are currently ignoring the preferred language of both disability advocates and the labor movement in ways that are unacceptable, and CDR intends to respond accordingly. CDR activists, including once again our CEO and President Bruce Darling, are back on site in Albany, sitting in once again until our voice is heard. We intend to return with multiple groups of activists throughout the week, all of whom are prepared to remain overnight in the Capitol building as our initial group of activists did last week.

We at CDR strongly appreciate the support from 1199SEIU and the New York labor movement; it is essential that organizations and movements like ours are able to work together in solidarity, and this has been a wonderful example of what we can achieve when working in tandem. To Governor Hochul and our other New York elected officials who would still see CDPAP privatized under a single for-profit entity; we are greatly disappointed in your lack of response and willingness to engage with our activists thus far. We look forward to your response to our ongoing demonstrations.