An app to track home health care aides has unintended effects

They’re called electronic visit verification apps, or EVVs. They log the hours and the movements of home health care workers paid for by Medicaid. States are just starting to roll them out as part of an Obama-era program that promised to make managing the work of home aides more efficient and reduce fraud in the system.

Virginia Eubanks is the author of “Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor.” She’s been following Arkansas’ implementation of EVVs and wrote a story about it for the Guardian newspaper with Alexandra Mateescu. Eubanks said the state’s app has been glitchy, which led to missed paychecks for aides. She told me about LeDanté Walker, who relies on a home health care worker. The following is an edited transcript of our conversation.

Virginia Eubanks: [Walker] had a predictably difficult time getting signed up that quickly. Once he got into the system and bought his care worker an extra cellphone so that she could use the app, her first paycheck was missing. And in the end, she was out $900 for two weeks [of] work. He spent every single dime in his rainy day fund to keep her afloat, and he says it was total chaos.

Meghan McCarty Carino: One of the features that you write about of these apps that seems particularly problematic is they can track where workers are with geofencing in an attempt to cut down on fraud or to sort of note where these workers are. But this can sort of backfire, right?

Eubanks: Basically, the story there is that though the technology was intended to make sure that care workers were actually delivering services at the time they said they were and in the location that they said they were, that geofencing makes all kinds of assumptions about who people with disabilities and older Americans are and what they need, that actually undercut the very point of programs like this, which are called home- and community-based services. So this is the story of Melissa and Kevin, two of my sources, and they call electronic visit verification an “invisible dog fence for humans” because of this feature called geofencing. And basically what geofencing does is use GPS to establish a maximum distance around a client’s home, inside which the care worker is allowed to clock in or clock out without getting flagged as noncompliant. So Kevin and Melissa live together, and Kevin’s plan of care includes things like meals and transportations and doctor’s appointments — all stuff that happens in the community, not necessarily in his home. And so one day, Kevin and Melissa go to a doctor’s appointment, it runs a little bit late, they’re a little late coming home and they’re hungry.

So they’re like, “OK, we’ll stop and get a meal.” So they stop, she clocks out, and they eat a meal, and they drive home. And the next morning, Melissa gets a call from her agency, and they asked her, “Why are you clocking out at Pizza Hut?” So the fact that these tools log the location of the care worker, because these are called personal care services for a reason, many advocates have argued that the tool basically amounts to a surveillance of people with disabilities. The National Council on Independent Living surveyed folks using EVV in 2020, last year, and they found that a third of people said that they stay home more often since they started using electronic visit verification because they’re concerned it will flag a service or a visit as fraud and mean that they lose wages. And as we see in Melissa and Kevin’s story, agencies understand it this way as well. So I heard sources say over and over and over again, the whole point of home- and community-based services is to delay or prevent being put into a nursing home. But basically what EVV does is make [them] turn [their] own homes into nursing homes. So they said, “It’s like house arrest. It’s like an electronic ankle monitor.”

McCarty Carino: How does what’s happening with EVVs sort of fall in line with other trends that you have noted in your research about the disparate effects of automatic systems?

Eubanks: The home care workforce is disproportionately comprised of women of color, and many of whom are immigrants, who, like many low-wage workers, are heavily surveilled on the job. The things that make survival when you are a poor and working-class family possible, like flexibility, like relationships — those things are undermined when we move to what are often very brittle and inflexible digital systems. One of the great concerns I have about electronic visit verification is that it actually undercuts six decades of work that advocates and people with disabilities have done to establish the basic right to autonomy in their lives, to live at home, to receive services in their communities.

McCarty Carino: Something that comes up in our coverage on the show is that many tools created for people with disabilities aren’t always created with their input or with their specific needs in mind. Is that sort of what happened here?

Eubanks: This is absolutely LeDanté Walker’s analysis of the situation, like you’ve basically just echoed his words almost directly. But it seems like instead, these tools are really designed by people who have no experience of home- and community-based services. And the assumption at their core is that people with disabilities are homebound and that they are not active agents living vibrant and full lives.

McCarty Carino: What has been the response from Arkansas and the app maker to this reporting?

Eubanks: Well, Arkansas and its contractor, Palco, sent a letter in response to my reporting in the beginning of July, and they said that they faced more challenges than they anticipated in rolling out EVV for self-directed clients. But they said that the problems had been solved and that care workers were getting paid, that geofencing, the messages people were receiving, were not errors. They were just informational messages. But as recently as July 27, I have heard from sources stories about care workers who still have not gotten paid, going all the way back to March. And the legal aid of Arkansas, for example, reports that they’re still getting many, many phone calls from folks who still have not been paid. My interpretation of their letter is that there were glitches, technical glitches, at the beginning, but they’ve largely been smoothed out. That has not been my experience, and it has not been what sources are reporting to me.

Related links: More insight from Meghan McCarty Carino

It’s definitely worth checking out Virginia Eubanks and Alexandra Mateescu’s full article for the Guardian, which has more personal stories of how the app is affecting folks in Arkansas.

And last year on the show, we did a full week of coverage about innovating for disability, including an interview with advocate Haben Girma, who is deaf-blind and helped design her own communication system combining a Braille computer and Bluetooth keyboard. She said people with disabilities constantly have to come up with their own solutions because technology reflects the biases of the people who develop it.

Eubanks studies how these biases in our digital systems can reinforce all kinds of inequities. And we’ve seen this a lot with the pandemic, as everything from work and school to court was moved online. A group of experts from the University of California, Los Angeles, and Harvard wrote about how the digital divide was creating barriers to accessing vaccines for some communities. And even for those able to overcome those barriers, Johns Hopkins epidemiologist Stefan Baral tweeted that digital vaccine passports — like QR codes or apps — used to enter sports venues or restaurants could further marginalize some groups. “Want to come into our mall?” he writes. “Show me your smartphone.” He notes that such systems could be as likely to exclude vaccinated people who can’t prove their status.