A number of community members at a recent Electronic Visit Verification (EVV) Regional Listening Session—including Independence Care System (ICS) members—expressed mounting frustration and concern over EVV, describing it as an invasive form of electronic monitoring that will impede their independence and violate their privacy rights.
The 21st Century Cures Act, signed into law in December 2016, requires all home health and personal care services paid for by Medicaid to use EVV systems. Beginning January 1, 2020, all visits made by individuals to assist people with disabilities at home must be tracked electronically via telephone, mobile application, or Fixed Object (FOB), a small, in-home device that can be attached to a watch chain.
The purpose is to validate hours of work for home health employees, combat fraud, and eliminate billing data entry mistakes.
The Regional Listening Session—hosted by the New York State Department of Health at the New York Marriott East Side on July 9—was the third session held in New York City. It was attended by Medicaid beneficiaries and family caregivers, disability advocates, and healthcare professionals. The event was part of a statewide series of sessions held by the State Department of Health on the forthcoming implementation of EVV.
State Department of Health presentation
State Department of Health representatives provided a brief overview of the Cures Act and EVV requirements, noting that Medicaid services and programs that will be affected by EVV include Personal Care Services Program (PCSP), Consumer Directed Personal Assistance Program (CDPAP), Certified Home Health Aide (CHHA) and Community Habilitation Program and Skills Acquisition Maintenance and Enhancement.
Representatives emphasized that guiding principles for EVV implementation are supposed to protect patient privacy, but many of those present were skeptical.
While the Department of Health representatives at the meeting highlighted EVV’s potential benefits—including accurate claims disbursement and safeguarding beneficiaries who receive care services—community members raised multiple concerns during the discussion portion of the event. Many decried the system as being highly invasive and a threat to their independence and privacy, and some objected to the idea of potential EVV vendors profiting off people with disabilities.
“EVV is nothing more than a financial giveaway to the medical technology vendors,” said ICS member Anthony Trocchia. “I find it offensive and reprehensible that there are businesses that seek to make a profit off of the freedom that people with disabilities have long fought to achieve rather than be warehoused in government-sanctioned, modern-day extermination camps commonly referred to as nursing homes.”
Other attendees said that EVV would derail consumer directed personal assistance, that EVV systems that rely on preset schedules violate CDPA consumer/employer rights, and that geolocation (GPS) tracking and biometric data collection are violations of privacy rights.
“Right before this meeting, someone asked me ‘Do you think DOH is doing this intentionally?’” said ICS member and board member Thomas K. Small. “I said no, I think they’re doing this recklessly. So whether it’s EVV, the management of long term care, or whether it’s how DOH is responding to consumer direction, I think it’s reckless that people’s lives are being put in jeopardy. This system is a disaster and is invasive.”
ICS member Julia Yepez noted that she feels as though the federal government is intentionally putting up roadblocks for people with disabilities, and that EVV would be a major disservice for people in the disabled community.
“When I became disabled, I found myself in one place I never thought I’d fall into, and that was that I wanted to commit suicide,” she said. “My career, everything, was finished. The reason I didn’t commit suicide was that I became a member of ICS and became aware of a greater need to live that was inside me. Now, someone else I don’t know is telling me I’m not worth it anymore? I have to be monitored?”
The Department of Health representatives stressed the importance of gauging feedback from various stakeholders—including consumers, providers of services, managed care plans, and local departments of social services—and thanked community members for their feedback. They also noted that the state has not selected any EVV solution or model to date, and that officials will need to review and process feedback from listening sessions, share updates on the EVV website and determine a strategy for executing EVV while continuing to collaborate with stakeholders. The state, however, is required by federal law to implement EVV beginning next January or face penalties.
“We fought to be independent and choose who we want in our homes, and to be able to go out and live a life like any human being,” said ICS member Joann Vitiello, also a founder of Concepts of Independence. “We were born disabled, or became disabled in accidents. We’re not criminals.”
For more information on EVV and to access listening session recordings and presentations, visit the state Department of Health website.