Last week, CDR participated in a press conference in Albany urging Governor Hochul and the state legislature to delay the deadline for transitioning folks to the new Statewide Fiscal Intermediary. CDR and the other ILCs are gravely concerned that there simply isn’t enough time to transition everyone – consumers and attendants – into the new fiscal intermediary. Without an extension, some attendants won’t be able to be paid and Disabled people – who rely on attendants for daily living – won’t have assistance. We appreciate the support from Assemblyman Josh Jensen – the only member of our local delegation who has publicly called for a delay.

During the press conference, Assemblywoman Amy Paulen blamed the “bad” fiscal intermediaries for not giving “their data” to the new Statewide Fiscal Intermediary. She praised the ILCs for sharing data with the statewide fiscal intermediary. To be clear, CDR has NOT shared consumer or attendant data with the new Statewide Fiscal Intermediary. As far as we are concerned, this isn’t CDR’s data. It is the personal data that belongs to our consumers and attendants. It is information we are entrusted with and have a duty to protect. There is a federal law that covers this. It is called the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Assemblywoman Paulen – who is chair of the Health Committee – should know that.

CDR has a long history of maintaining the confidentiality of consumer’s personal information. About twenty years ago, a county who contracted with CDR to serve as the fiscal intermediary asked CDR to provide details about the CDPAS attendants working through CDR. They were concerned that some of these individuals were working while receiving Medicaid. They wanted the entire attendant roster and payroll information so they could identify people who didn’t accurately report their income. This didn’t sit well with our Board of Directors who felt our attendants were being targeted.

CDR’s board asked an important question, “If these attendants worked for Wegmans, Paychex, or a traditional home care agency would the county ask for this information and get it?” The answer to both questions was “no.” The county wouldn’t even ask these employers for their personnel and payroll records because it would be seen as intrusive and overstepping authority. The board felt that CDR’s contract was being leveraged inappropriately, and the Board passed a strong resolution to ensure that this information would remain confidential.

Not everyone recognizes that this information is confidential and should be respected. In fact, some people don’t seem to think twice about unethically using other people’s personal information for personal gain.

About ten years ago, CDR became aware that confidential consumer and attendant information had been taken from Angels In Your Home – owned by David Wegman – and given to All American Home Care – founded by Thomas Hanna Jr. – by the Angels’ former CEO, Marco Altieri. CDR contacted the NYS Department of Health, the NYS Attorney General’s Office and the Office for Civil Rights at the US Department of Health and Human Services which oversees compliance with federal laws protecting confidential health information.

NYS Attorney General Eric T. Schneiderman agreed that the actions violated the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”) Privacy Rule. He said, “It’s unacceptable for a home care agency to try to pad its pockets by using patients’ personal information without their consent. My office will continue to hold accountable any company that violates a patient’s right to privacy, especially for commercial gain.”

Governor Hochul, Speaker Heastie, and Assemblywoman Paulen are arguing that this situation is different. In this case, the State of New York is instructing CDR to give the information to the statewide fiscal intermediary. We have dealt with a similar situation before. In that case, RCIL was funded by the state’s vocational rehabilitation agency to provide IL services and also was funded to provide advocacy and support for Disabled individuals who had complaints or concerns about their vocational rehabilitation services as the local agency for the Client Assistance Program. The state VR agency told us that we were required to share our program data with the vocational rehabilitation agency as part our IL contract, and that included the CAP roster. Although we were willing to comply with reporting requirements and share aggregate data, RCIL refused to provide the data on specific individuals to the vocational rehab agency. Some of the consumers got information and had their issue addressed without VR even knowing it. Sharing their information would have “outed” them and could have potentially created unnecessary problems for these consumers. We weren’t the only ones to take this position. Other IL Centers did the same. There was a bit of back-and-forth, but ultimately the state recognized the issue, and we moved forward.

Today, state officials are vilifying fiscal intermediaries for not giving the Statewide Fiscal Intermediary people’s personal information. They attribute this entirely to them being bad actors, but these state officials are refusing to acknowledge an underlying issue: people – including people with disabilities – should have control over their personal information. At least one court has agreed with this and issued a restraining order.

The problem is that these officials are invested in the outcome of the request. Members of our local delegation (State Senator Jeremy Cooney, Assemblyman Demond Meeks, Assemblyman Harry Bonson, and Assembly woman Jen Lunsford) have acknowledged that the move to a Statewide Fiscal Intermediary is intended to lay the groundwork for SEIU 1199 to organize the home care workers. A successful organizing campaign would mean a big influx of money into SEIU’s coffers and into the political campaigns of elected state officials – including the Democrats advancing this proposal. State policy makers point to the fact that there is a state law mandating the change and they only expect the fiscal intermediaries to comply with it by sharing the data. There’s a big problem with that.

We can see how the CDPAP effort benefits the union and democrats, let’s take a different example from the other side of the culture war. Some conservative states have passed legislation that makes it illegal for people to assist a minor in their state to get an abortion in another state. To prosecute such cases, these conservative states could ask healthcare providers – an in-state healthcare provider or an out-of-state abortion provider – to disclose confidential health information. This would be a request from a state that is enforcing a state law. Governor Hochul, Speaker Heastie, and Assemblywoman Paulen would be outraged and support the healthcare providers refusing to release any records.

The political doublespeak demonstrates a couple of things.

First, elected officials, policy makers, and politicians are putting their interest in getting the money above the privacy rights of their constituents. Although Governor Hochul has publicly stated that this is about addressing fraud, there are systems and state agencies that identify and prosecute fraud. This policy is really about the potential union dues that this group of workers could potentially generate. Ka-ching! To be fair, it’s a money grab with a purpose. By giving SEIU the ability to easily organize CDPAP workers, Dems will have more resources to win political offices and prevail in the culture war. The analysis stops there because that end justifies the means.

Disabled people are also seen through an ableist lens as a “less than” underclass. Policy makers just aren’t thinking about these issues from our perspective. The situation is far worse for people who use Long Term Services and Supports. This group of Disabled people are readily and repeatedly vilified as part of the “Parasite Class” or commodified as raw material for other people’s profit. Ironically, while state officials complain about the “bad” fiscal intermediaries making money off of Disabled New Yorkers. That’s what the Governor and legislature are – themselves – on behalf of SEIU. And, it’s what All American Home Care demonstrated when it used the private information taken from Angels in Your Home to start its own business.

The non-disabled world’s ableist disregard for people with disabilities demonstrates itself in other ways. As Disabled people, we know that there are a lot of ways to accomplish a task, and we sometimes need to find a way that works best for us. In this case, CDR didn’t just throw our arms up in the air and say “there is nothing we can do.” Instead, we decided to call consumers, get verbal consent, and do a three-way on-boarding call with the new Statewide Fiscal Intermediary. This didn’t just respect people’s privacy and autonomy, it added additional support in the transition process. The new Statewide Fiscal Intermediary offered to assign specific customer service representatives to CDR and give us a direct number so we could work as a team. CDR appreciated this initial show of good faith. It never materialized.

We were subsequently told by the Statewide Fiscal Intermediary that Amanda Lothrop – the state’s Chief Operating Officer for Medicaid – told them should not work with CDR in this manner. Frankly, it seemed peculiar that NYS would get so involved in the details of how two private organizations would work together. It was also counter productive, undermining an earnest effort to transition people. We expected the state to contact us. When they didn’t, we notified the Hochul administration of our concern by email and received a response that our concern was noted but nothing else.

CDR has initiated our plan and is working with whatever person from the statewide fiscal intermediary answers the phone. Results vary. Last week we tried using the Spanish language line and could only get English-speaking people. Our staff translated. We are, however, doing our part to ensure people have access to the services they need.

We just wish our state policy makers were doing the same.