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AI Policy & Governance, Equity in Civic Technology, Privacy & Data

EVV Threatens Disabled People’s Privacy and Dignity — Whether We Need Care, or Work as Professional Caregivers

Wiley Reading is a white trans man with ADHD who works as one of a few personal care attendants for Pat (not her real name), a non-binary white woman who uses a wheelchair because she has cerebral palsy. But what should be a straightforward work relationship between two disabled people has become complicated, like much of modern life, by technological intrusion forced on people by Congress. The recently-enacted 21st Century Cures Act, which passed over the objections of disabled activists, requires Pat’s personal care attendants (whose services are funded by Medicare and Medicaid) to use an Electronic Visit Verification (EVV) system that records attendance, geographic location, and other invasive details about how they do their jobs. Increasingly, states are attempting to meet EVV requirements through apps or software programs to make it “easier” for disabled people and support workers, but these programs can be intrusive and cause new privacy violations.

Thanks to the new law, the over 2.5 million people who receive Medicaid funding for Home- and Community-Based Services have to manage, nearly minute by minute, their personal care workers’ activities with often proprietary software programs. EVV systems require care workers to sign in and out, to record task-by-task exactly what they are doing for the disabled people they support, and often to record those entries in real time with geolocation markers enabled. They aren’t allowed to enter their activities at a later time, supposedly in an attempt to combat fraud, and in many states, the location of services must be at the disabled person’s home. These limits mean that disabled people and support workers typically must provide in exacting detail their precise location throughout the workers’ shifts, and their geolocation markers must match one another’s or else potentially be flagged by the software — even if a disabled person asked their support worker to walk across the street to pick up a package, or retrieve a curbside grocery order. Support workers must also turn their time and attention to an app on their phone, constantly interrupting the services they are supposed to be providing.

Most advocates have pointed out the ways in which EVV requirements can place disabled people’s privacy, dignity, and autonomy at risk — especially because of the ableist assumption that disabled people never leave their homes for any reason at all. But advocates should also care about how EVV can harm workers providing care just as much as it can harm disabled people who need care — and how it can threaten workers’ rights to privacy, dignity, and autonomy, especially workers who are also disabled. 

Like Wiley, I have ADHD, which makes it infuriatingly frustrating to attend to repetitive and detailed administrative or bureaucratic tasks — the very nature of EVV software. 

“I struggle particularly with remembering things like passwords and admin tasks like signing in and out of apps,” Wiley wrote. “I use three different sign-in apps for three of my jobs, and keeping track of them and remembering to sign in and out is a nightmare. I frequently mess up, which means my bosses [disabled people I work for] and clients have to fix it for me.” Worse, Wiley noted that the EVV system they use sometimes “glitches on its own” even when he remembers to use it right.

Pat agreed, describing EVV as “a hassle for me as an employer and for my employees.” She said that the specific phone app she is required to use is “cumbersome and hard to understand.” Before, Pat used paper timesheets to account for each of her personal care attendants’ hours. That system worked for everyone, did not collect deeply personal and invasive data, and Pat had no issues with Wiley’s attendance or timeliness for over seven years.

Additionally, and as Data & Society’s team reported, EVV technologies represent another facet of the growing use of punitive surveillance technologies disproportionately targeting low-wage workers, who largely come from marginalized communities. The paid caregiving workforce includes disproportionately large numbers of women of color (especially Black and Brown women), many of whom are from immigrant communities. While there aren’t any comprehensive statistics available, advocates know many such workers are also disabled. Disabilities are more prevalent in all marginalized communities than in resourced or privileged ones for a multitude of reasons, including targeted violence, medical discrimination, and the health effects of poverty and exploitative labor conditions. The ableist and racist assumptions embedded in the EVV requirement are that disabled people, poor people, and people of color are more likely to be fakers, liars, or grifters — assumptions that both Pat and Wiley described as insulting.  

But, despite the seemingly intractable harms that EVV poses, states still have the opportunity to act on their own to develop and implement clear regulations limiting the use of the most harmful types of EVV systems. The 21st Century Cures Act does not require the specific use of global positioning systems (GPS) or real-time activity logs — just the collection and verification of information about the type of service provided, the location where the service was provided, the date and time the service was provided, and who provided the service to whom. States could prohibit the use of GPS tracking, as it is not required by the federal law for compliance, and stipulate that disabled people who hire care workers only need to verify the location where a service began and ended without providing more detailed information about other locations they and their care workers visited. Ultimately, however, Congressional action is the only way to reverse implementation of EVV requirements and prevent states from imposing more onerous and invasive requirements on the systems they’ve authorized. 

Until then, millions of disabled and elderly people, and the often disabled workers who provide services to them, will remain subjected to insulting, ineffective, and inefficient micromanagement — sorry, worker management — software.