In response to her remarks regarding the Consumer Directed Personal Assistance Program becoming a “racket,” multiple independent living centers (ILCs) and disability rights organizations, including the Center for Disability Rights, have joined together to request a meeting with Governor Hochul. We are deeply frustrated regarding the policy decisions being made on critical programs without consideration for or input from the marginalized communities who created them.

Governor Hochul will be hosting an ADA celebration at the Governor’s Mansion in Albany, NY on July 29th; we believe that this would be an ideal opportunity to meet and discuss her position on these services, as well as to engage with her Disabled constituents on how these programs impact our lives (and our votes). The full meeting request, written by CDR’s President/CEO Bruce Darling, reads as follows:

My name is Bruce Darling, President/CEO of the Center for Disability Rights, an independent living center (ILC) and fiscal intermediary for the Consumer Directed Personal Assistance Program (CDPAP) in New York. I am writing to request a meeting with Governor Hochul regarding CDPAP and the policy decisions being made about us without us by her administration.

As you are aware, the CDPAP proposals in this past year’s budget, as well as the several preceding budgets, have involved intense discussions between various stakeholders (including ILCs) and the state. While ILCs fought against the proposal, we were somewhat relieved when we were told we would retain the ability to continue to provide fiscal intermediary services to the individuals we support. We were also told by the Governor’s Deputy Secretary for Health and Human Services, Angela Profeta, and her staff that we would be able to remain “whole.” We were, however, extremely disappointed when the RFP was released. Our roles as fiscal intermediaries were not clearly defined and, depending on the interpretation of the RFP, may actually even be more limited than in the original budget language.

We agree that there is a need for the State to address bad actors and abuse of the program, particularly as a mechanism to advertise for insurance companies. However, we believe that the State has and is continuing to make a grave mistake by not working with independent living centers and the other disability-led organizations that created this program.

CDR, itself, played a significant role in establishing the state statute that mandated access to the program. As UNPAID VOLUNTEERS, we wrote the 200-page policy report, titled Early to Bed/Late to Rise, that underpinned state advocacy for this program.

Here is a link to that report: https://cdrnys.org/wp-content/uploads/2021/02/EarlyBedLateRise.pdf

It is our intimate knowledge of the program and unique perspective as a Disability-led organization that makes us indispensable to ensuring the program continues to responsibly provide services to those that need it the most.

We have used this program – not only to support Disabled individuals in being integrated into society – but to uplift our community. We provide jobs to Disabled individuals. Funds that would otherwise enrich non-disabled people are reinvested in our communities and the efforts to fight for our liberation. This platform underpinned our well-documented work that saved Obamacare and Medicaid in 2017.

We understand that the Statewide Fiscal Intermediary policy was proposed by SEIU, but SEIU has told us they advocated for – and continue to support – the ILCs as remaining full fiscal intermediaries including all payroll functions. They have told us that despite the union’s efforts, the Hochul administration has been unwilling to maintain our role in the system. We simply don’t understand why your administration (and the legislature for that matter) would take a position that further disenfranchises an already deeply disenfranchised community. While there are people who make a lot of money off the system (referred to as the Disability Industrial Complex), WE ARE NOT THOSE PEOPLE. We sincerely agree that this is an issue that must be addressed, but this can be done without leaving our community behind as collateral damage.

We expected better.

In addition to his other deeply problematic issues, Governor Hochul’s predecessor was outright hostile to Disabled people. We had been hopeful that Governor Hochul – who clearly understood the dynamics of power and privilege which were being weaponized against women – would recognize how those same dynamics play out for the Disability Community. Instead of addressing this bias and elevating our community, her administration has now chosen to crush our community, even in the face of unified opposition of SEIU and the Disability Community.

We are happy to meet with the Governor’s staff, but we feel that a Governor committed to equity and transparency should, herself, meet directly with us – Disabled individuals who have been leading the fight for our own integration. She needs to understand – herself – how her actions are being seen by Disabled people. Some of us will be in Albany for the ADA reception. This would be an ideal time to meet.

Finally, I have been advised that some people in the administration may take offense at my framing and words. If so, please consider how these words would sound if they were coming from an LGBTQ group that established HIV/AIDS services in the 1980s and was now being forcibly removed from that system, or a network of women’s health clinics – run by women – that were being defunded to support a national organization led by men. Marginalized people should be centered in the systems that support their community, not sidelined. The Disability Community should be no different.

Thank you.

We are looking forward to a response from Governor Hochul and her administration as soon as possible. In the meantime, we ask Disabled New Yorkers to contact Governor Hochul’s office and encourage Governor Hochul to meet with ILCs and Disability organizations on the future of CDPAP.