What would it feel like if you needed to verify your identity and physical location with your state government via a GPS-enabled biometric device every time you exercised a civil right? And if you didn’t properly check in, you ran the risk of losing that right — or of losing your health, or even a family member’s life?

What would it feel like if the government then outsourced the responsibility for managing that check-in process to a third-party contractor that required you to use a clunky, custom-made device with a slow UI — and a backend database prone to leaking protected personal health data to other people? What if the recipient of the contract to build those devices and maintain those databases was a major lobbyist behind the law establishing this obligation?

My guess is that you would be infuriated. I certainly wouldn’t stand for it. Yet this is the scenario being enacted for Medicaid recipients who utilize personal care attendants (PCAs) and in-home health care aides (HCAs).

Buried in the 21st Century CURES Act, signed by President Obama in 2016, is a directive for states to adopt Electronic Visit Verification (EVV) technologies and services that will track and verify the labor provided by caregivers to Medicaid recipients and their families. By electronically logging when and where a caregiver begins and ends a shift, EVV is intended to ensure that the services billed were actually provided, which ostensibly offers some fraud-protection to both care recipients and taxpayers.

The core purpose of in-home care assistants is to ensure that differently-abled persons and their families are able to live the fullest life possible in their own community and not in an institution.

At first glance, EVV seems like a simple distributed time clock, but it also represents a deceptively intrusive tracking of the lives of Medicaid recipients. Caregivers for the disabled are required to work flexible hours and in a variety of locations. Recipients of these services are people who may need help getting to a doctors appointment one day, or getting around the mall another day, or none at all the next day. Parents of disabled children might need relief one day in order to attend their other child’s recital and need none the next day because Grandma is in town. Furthermore, many caregivers have more than one client and many clients have more than one caregiver. That trip to the mall might involve a shift change at the food court, or attending a recital might involve a shift change back home. And in states that allow family members to be paid as caregivers, the majority of PCAs and HCAs may also be friends of family members. 

The core purpose of in-home care assistants is to ensure that differently-abled persons and their families are able to live the fullest life possible in their own community, and not in an institution. Altogether, access to Medicaid, the protections under the Americans with Disabilities Act and the 1999 Olmstead v. L.C. ruling, establish that Americans with disabilities are entitled to receive — as a statutory civil right — independence-sustaining support from caregivers of their choosing in their own homes and communities. This is supported by a somewhat kludgy public policy of treating Medicaid recipients as employers whose employees are paid by the state’s Medicaid office or via a third-party agency.

Refractive surveillance: Surveillance is always adaptable to other purposes

It’s rare that data collected for one purpose will be restricted to just that purpose. Sociology of data scholars Solon Barocas and Karen Levy have shown how attempts to monitor consumer behavior within retail stores becomes a method for also monitoring the activities of employees. This unilaterally changes the power dynamic between employer and employee. For instance, many high-end retailers have adopted “clienteling software” that tracks consumer preferences and history and puts it in the hands every staff member via a tablet. This software replaces the primary value offered by experienced workers at high-end retailers: an established memory of, and familiarity with the tastes of regular clients.

In Barocas and Levy’s interpretation, this externalizes the worker’s valuable knowledge, and makes each worker more substitutable. Additionally, monitoring customer behavior at a granular scale leads to tailoring staff schedules to customer activity to cut staff expenses, which results in less reliable schedules and income. Thus electronic tracking of customers leads to a change in the power of the employees, even though the employees aren’t technically the people being tracked.

This is what they name refractive surveillance. Collecting information about one group can lead to increased control over another group because data is easily repurposable:

This effect of data collection is often overlooked. Debates about consumer privacy have largely missed the fact that firms’ ability to develop a better understanding of consumers also impacts workers’ day-to-day experiences, their job security, and their financial well-being. …

Collecting data about customers, then, can have non-intuitive effects on workers — by potentially reducing their bargaining power, contributing to schedule instability, and subjecting them to new types of evaluation. Our notion of refractive surveillance highlights a very practical need to build data-driven systems that acknowledge and balance the many interests at stake.

When caregivers log into a GPS-enabled EVV device, they also provide a precise and analyzable location history of the clients, and by implication a record of private and Constitutionally-protected behavior. This is one of the tricks of data analytics, especially when enhanced by machine learning techniques: data is never just about the thing you originally think it is, it is always also about what can be mechanically inferred. EVV adds an extra layer of intrusion because it unilaterally alters the labor-management relationship between PCA and client while offloading audit responsibility to the client. EVV establishes distrust as a baseline in a relationship that is fundamentally about trust.