A Discussion on EVV and People with Disabilities

Since last year, members of the CLDR, a group of New Yorkers with disabilities who advocate for themselves and their community while sharing ideas, tools and information about how to effect change, joined disability rights advocates from Independence Care System (ICS), Center for Independence of the Disabled –NY (CIDNY) and others, to express concern and frustration over EVV. Many decried the system as being highly invasive and a threat to their independence and privacy.  

The 21st Century Cures Act, signed into law in December 2016, required all home health and personal care services paid for by Medicaid to use EVV systems as a way to validate hours of work for home health employees, combat fraud, and eliminate billing data entry mistakes.

Starting this year, all visits made by individuals to assist people with disabilities at home were to be tracked electronically via telephone, mobile application, or Fixed Object (FOB), a small, in-home device that can be attached to a watch chain, but New York State filed for a Good Faith Effort (GFE) exemption, delaying the implementation until January 1, 2021.

The threat of EVV

Ms. Scalia, a disability rights advocate who is also president of the Board of Directors at Consumer Directed Personal Assistance Association of New York State (CDPAANYS), explained that Stop EVV is a grassroots campaign led by people with disabilities and personal care providers to raise awareness about the abuses of EVV. Her presentation focused on providing members with a better understanding of EVV, and included a review of lingo and definitions, different types of EVV, including telephone, mobile, Bluetooth and FOB, and the federal law and state policy for EVV.

Ms. Scalia discussed the potential harms EVV can cause consumers and personal assistants, such as privacy violations, loss of worker wages and the required use of technologies or rules that may force consumers to stay home. She also noted that EVV will require consumers and PAs to be physically together to use – making it difficult for a worker to run errands or shop, for example, and force consumers or workers to pay for technology.

Ways to advocate against EVV

Ms. Scalia discussed various ways members and their personal assistants can advocate to raise awareness and make known their concerns about EVV, noting that:

• Each agency or fiscal intermediary must hold mandatory stakeholder engagement sessions to choose their EVV solutions
• People who use homecare or personal assistants can ask for specific types of EVV they prefer
• Individuals can provide feedback on EVV components or details that don’t work, and hold agencies accountable to address consumer needs
• People with use homecare or personal assistants can create a Consumer Advisory Committee

Taking action against EVV

Ms. Scalia highlighted two pieces of legislation, including the COVID Recovery for Seniors and PWD Act – S.3740 & H.R.6951 – and the Cures Act 2.0.

 “It would delay EVV until six months after the coronavirus pandemic concludes, and would also suspend Medicare and Medicaid asset tests and update Supplemental Security Income eligibility threshold, among other benefits,” she said of the COVID Recovery for Seniors and PWD Act, which is currently under consideration in Congress.

The Cures Act 2.0, Ms. Scalia said, is crucial, as the policy would remove geo-tracking and biometrics within EVV systems to account for changes in service location and address privacy concerns for consumers.

Members were encouraged to take action and email their local officials, including U.S. Senators Charles Schumer and Kirsten Gillibrand, or reach out to them on Twitter at @SenSchumer or @GillibrandNY.

Addressing member questions

Following the presentation, Ms. Scalia answered a number of questions from participants. Several asked whether there was any pending litigation over EVV.

“We have been looking for pro-bono litigators for years now, and we’re not finding anyone,” Ms. Scalia said. “The American Civil Liberties Union said it would be difficult to litigate, difficult to prove, for example, that problems with EVV led to an individual being institutionalized. We would need a class action lawsuit.”

ICS member Robert Acevedo asked for more details about the stakeholder sessions.

“Stakeholder sessions are required by federal law,” Ms. Scalia said. “Conversations about designing different systems and the training with those systems must be discussed.”

Members and people with disabilities will likely have questions about EVV, which can be a complicated issue. For more information, view the full presentation here, email Ms. Scalia here or visit the Stop EVV website.