Weight privacy, need for tracking in debate over new systems

Weight privacy, need for tracking in debate over new systems

At times the need to protect both our public resources and our rights to privacy collide. This is true as Minnesota moves toward implementing electronic visit verification or EVV. Disability rights activists and health care workers find themselves at odds with the Minnesota Department of Human Services (DHS) over how the verification system will be implemented. 

EVV is a method used to verify home health care visits. It’s a federal mandate from the 21st Century Cures Act, passed in 2016. The need to address fraud and waste has its origins in the Affordable Care Act of 2010, so it’s not a new idea. The verification program covers personal care services or those that support activities of daily living and require an in-home visit. The federal law requires providers to use an EVV method.  

Minnesota has a tentative agreement with SEIU Healthcare as to which system will be used. But concerns remain for some. 

Systems implementation is overseen by the Centers for Medicare and Medicaid Services (CMS). States have some discretion as to which monitoring system they choose; Minnesota has chosen a hybrid model. Not having a verification system in place can mean loss of federal funding. 

Personal care services were to be under monitoring by December 1, 2021, but that was delayed as DHS works with its service provider HHAeXchange, on a hybrid model that allows for use of the state’s system or a system of the provider’s choice that can send data to a state aggregator. Home health services face a January 1, 2023, federal deadline to be on an EVV system.  

Monitoring systems are important for two reasons. One is to make sure that clients are not neglected, and that they receive needed services. 

Fraud and waste also demand heightened scrutiny. Estimates vary as to how much Medicaid and Medicare fraud takes place every year. It’s always conceded that the true extent of such fraud isn’t known, which is worrisome. One 2020 estimate put the Medicaid losses alone at almost $86.5 billion. Those are dollars that should be making our lives as people with disabilities better, not lining someone’s pockets. 

Various issues come into play with verification systems and work with clients. One is, when does tracking start? Many of us who rely on home care or care in our workplaces routinely ask staff to help pick up a prescription or a few groceries en route to the client. How is that staff time factored in? 

Another issue is technology and the great inequities that exist in our state. News reports from Alabama a few years ago indicated that one care provider firm spent $68,000 on tablets for staff. That costs didn’t factor in the need to make improvements for clients without Internet access. The digital divide in Minnesota, especially in parts of Greater Minnesota where Internet access is poor, cannot be ignored when EVV is discussed. 

The greatest concerns recently voiced center on privacy, and the potential that yet another monitoring device could drive health care workers out of a system that badly needs more of them. Careful consideration must be given to those concerns. 

Cynics might argue that with omnipresent social media and cameras everywhere we turn, there is no reasonable expectation of privacy today. We disagree. We need an airtight system to protect privacy when receiving services.  

We also find compelling arguments in a recent report by Data & Society, an independent nonprofit research organization that focuses on new technology. Its members study the social implications of data and automation. 

In Electronic Visit Verification: The Weight of Surveillance and the Fracturing of Care, Data & Society Researcher Alexandra Mateescu found that the surveillance of home care workers through EVV erodes critical support for people with disabilities and older adults while offloading significant, unacknowledged burdens onto both workers and clients. 

Drawing on interviews with advocates, activists, and 20 workers and service recipients across the country, Mateescu detailed how the rollout of EVV systems within Medicaid home and community-based programs was built on a poor understanding of how services are actually provided. Her thesis is that electronic monitoring adds to the growing landscape of “punitive technologies that target and criminalize both low-wage workers and public benefits recipients.” Keep in mind that many care workers are BIPOC and are women, and the need for sensitivity is heightened. 

We know that DHS is sensitive to and understands such issues, especially in light of our health care workforce catastrophe in Minnesota. We hope both sides in this debate are open to listening to one another and can continue to share ideas to make Minnesota’s EVV system the best it can be.