At 11:30am today, many of our staff here at the Center for Disability Rights [CDR] took to the War Room on the second floor of the Capitol building in Albany, protesting Governor Hochul and Speaker Heastie’s recent budget proposal. Our employees and other assembled activists remain there at time of publication, risking arrest. This proposal, being decided upon largely behind closed doors, would eliminate Independent Living Centers [ILCs] as fiscal intermediaries for the Consumer Directed Personal Assistance Program [CDPAP], instead effectively privatizing CDPAP under PPL, Inc.: an out-of-state, for-profit corporation with little to no incentive to prioritize the quality of care that those in the program receive. This decision will directly endanger the programs and resources that allow many disabled individuals to remain at home with their loved ones, and therefore we at CDR believe that this budget proposal is unacceptable in its current state. To that end, we call upon Governor Hochul and Speaker Heastie to keep control of CDPAP in the hands of those who created it and will continue to protest until our community’s needs are respected.

Bruce Darling, CEO & President of our organization, is also in attendance at today’s protest in Albany, having given his statement to the Empire Report:

“It is unconscionable that Governor Hochul and Speaker Heastie want to take the program away from the people with disabilities who created it. Independent Living Centers that provide CDPAP are more than fiscal entities, we are community centers and hubs for Disability justice advocacy.”

How ILCs Protect The Disabled Community

Independent Living Centers providing CDPAP have enabled countless disabled individuals to live at home with our loved ones and with dignity for decades, and have been able to do so because we operate from a position of prioritizing self-advocacy. These programs and resources enable people with a wide array of disabilities to dictate our own care needs and to receive that specialized care through family, friends, and other trusted individuals. If Independent Living Centers are removed as fiscal intermediaries as Governor Hochul’s budget proposes, many disabled individuals across the state of New York – including many of us here at CDR – could be forced into various group care environments, such as nursing homes, when we are better suited to remain at home with our families and communities.

The Recent Growth of CDPAP Usage

This budget proposal also comes at a time when CDPAP and ILCs are experiencing a new wave of exposure via social media that could allow many disabled New Yorkers to live fuller, happier lives; instead, Governor Hochul, Speaker Heastie, and several Assembly Members seem to see this rise in awareness as something to discourage. Assembly Member Alex Borres provided the following comment to Spectrum 1 News regarding his concern about the program’s growth: “We’ve all see the Tik-Tok videos of people saying, ‘How to get paid by the state.'” However, this understanding of the issue outright neglects the many disabled individuals and families who are only discovering these programs for the first time through platforms like TikTok. Individuals and families should not be first discovering that there are ways for them to survive and afford an accessible life at home through TikTok, and should have been reached long before that point. While many in government have been focused on the issue of fraud as we witness an influx of individuals making use of these services, few have seen fit to comment on the fact that these are people who genuinely need the assistance and resources, and have been failed in such a way where they are taking to the social internet to learn what to do. We should see our elected officials supporting ILCs and their increased utilization; instead, we are witnessing the opposite, and seeing growth used as a reason to redirect this program away from those who made it so successful in the first place.

This raises the important question: why would our elected officials not encourage awareness, support, and further funding of ILCs and CDPAP, and instead seek to privatize them under PPL? The answer, as is often the case, seems to lie in the bottom line.

Cutting Corners On Care To Cut Costs

Many government officials, in speaking on the proposed budget, seem to either entirely focus on efforts to save the state money or are otherwise wholly unaware of the broader-reaching impact this proposal would have for their many disabled constituents relying on CDPAP to remain at home. Assembly Member Alex Borres continued his previous comment to Spectrum 1 News as follows: “I think some portion of the growth is people caring for their relatives, and when CDPAP is done, well, it’s actually going to save the state money because the alternative is sending someone to a nursing home.”

With such an obvious emphasis placed on the cost of care rather than the quality, and with anecdotal evidence to support massive quality of care concerns with Governor Hochul’s and Speaker Heastie’s selected corporation to take on CDPAP, it is apparent that little thought has been given to the fate of those who rely on these programs for basic human dignity. PPL, Inc. has previously proven itself to be incapable of managing a program like CDPAP with respect for the folks who use it. Our Board Vice Chair, Dawn Russell, provided the following comment to the Empire Report on PPL, Inc.’s management of care in Colorado: “I have watched that company drive other Disabled folks into institutions or go without service. I wouldn’t wish this on my worst enemy.”

The Risk To CDR and The Disabled Community

If this budget proposal were to move forward as is and if ILCs like CDR were removed as fiscal intermediaries for CDPAP, the repercussions would be wide-reaching and vastly damaging. We here at CDR would experience the following impacts:

• Lost revenue: CDR will lose as much as 80% of its administrative funding, directly impacting many services we are able to provide for the disability community.
• Lost jobs: CDR could lose funding for up to 55 positions; 19 full-time CDPAP administrative staff and 36 additional staff across CDR.
• Lost community space: CDR would no longer be able to afford certain office locations providing CDPAP services, among other support services.

These figures represent the impact just on our organization alone. We are one of eleven different ILCs that serve as fiscal intermediaries for CDPAP in New York State. All of these organizations would be impacted, mostly to a similar degree. Eleven organizations. Each of us with massive reach and impact across New York’s disabled community.

Many of our own staff here at CDR rely on CDPAP ourselves. For us, this is not simply a matter of maintaining our jobs; this is a matter of maintaining our independence, our homes, our safety, and our lives. As Jensen Caraballo, staff with CDR, states: “This program is about our freedom and dignity. We’ve fought hard to have our rights respected, and this proposal feels like it’s ignoring all of that, just to make a corporation richer.” Ria Black, CDR staff and current on-site correspondent for today’s protest, echoed Caraballo’s statement: “This is a day that is critical for the health and well-being of disabled individuals. The services that disabled people get should and must be designed by disabled people to be effective for disabled people.”

Put simply: this is more than professional. This is personal, and we as an organization plan to operate accordingly, for both us and for those we support through our work. Our lives are on the line too.

What We’re Doing About It

To that end: we at the Center for Disability Rights strongly condemn Governor Hochul and Speaker Heastie’s handling of this budget proposal that would leave such a critical pillar of their disabled constituents lives at the mercy of a for-profit corporation, one that has shown itself to be irresponsible with managing similar programs in the past. PPL, Inc. will have little to no incentive to handle this program with the care or respect necessary to maintain the health and dignity of those who depend upon it, like many of us do here at CDR. CDPAP is best left under the management of the organizations who helped found it, and the people whom it directly benefits.

We at CDR greatly appreciate the support specifically of Assembly Member Paulen and several other Assembly Members who have stood by us; thank you for your ongoing commitment to protection of ILCs and the disability community as a whole. We also call specifically upon Governor Hochul and Speaker Heastie to back away from supporting this budget proposal that would eliminate ILCs as fiscal intermediaries; this budget proposal as it stands will greatly harm your disabled constituents, who will remember this moment come election season. To Governor Hochul and Speaker Heastie: we look forward to your swift response and to your favorable decision regarding the proposed budget.