The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients

Technology is perpetuating discrimination.

By Ariana Aboulafia and Henry Claypool

In Arkansas, the Guardian reported on a disabled Medicaid recipient who depleted his savings to pay for a smartphone for his Medicaid-covered caregiver—and then had to pay even more to cover caregiver wages that were withheld due to technical glitches. In Ohio, the Mighty reported on someone who placed the electronic device meant to certify his caregiver’s activities in the refrigerator when not in use because he was concerned about privacy. And throughout the U.S., other outlets have reported on disabled people who have been forced to share photographs and biometric data with third-party apps if they want to continue receiving government support to pay for their in-home care.

All of this is thanks to a program known as electronic visit verification, or EVV. EVV ostensibly aims to reduce waste, fraud, and abuse in the Medicaid system by requiring that caregivers of disabled people “prove” that the covered individual is actually receiving their approved care. Under federal law, all states must require that health and home care providers utilize some form of electronic visit verification; if they do not, they risk a reduction in funding for their Medicaid programs.

Medicaid-funded in-home care helps to make life more accessible for many Americans with disabilities, and has done so for decades. However, EVV creates barriers to accessing that care, and in doing so contravenes the intent of anti-discrimination statutes like the Americans with Disabilities Act. When the ADA was signed into law on July 26, 1990, it marked a critical turning point in the modern disability rights movement. The ADA had the noble intention of eliminating discrimination against people with disabilities, partially by providing for accessibility in all arenas of American life. But 33 years later, the law has been unable to entirely fulfill its ideals—and in many cases, the rapid proliferation of technology can serve as a barrier, not only to the mission of advancing accessibility, but also to reducing discrimination against disabled people more generally. Electronic visit verification illustrates what discrimination can look like for people with disabilities in a digital age, and serves as a reminder that successfully combating disability discrimination requires looking beyond accessibility.

Technology can intersect with disability in unique and devastating ways. For example, algorithmic bias—which shows up in employment via the use of algorithm-driven hiring tools and tests—can harm people with disabilities by unfairly screening them out of jobs. Because a significant amount of their health-related data may be stored on devices or apps, disabled people are also especially at risk when it comes to issues of data privacy—which have become even more important in the wake of the 2022 Dobbs decision. The use of surveillance technology in schools, like student activity–monitoring software and student threat assessment software, can lead to adverse consequences for disabled students, including a disproportionate chilling effect on speech both in and outside of school. As is the case with electronic visit verification, many of these concerns—data privacy, surveillance, and personal privacy—often manifest simultaneously, thus amplifying their effects.

In practice, EVV can look different depending on the state—for example, some states use mobile apps that require Medicaid-funded home-care workers to submit photographs of the disabled person to whom they are providing care periodically throughout the day. At times, those photographs must pass through facial recognition procedures to verify that the individual receiving care is actually who the worker says they are. A worker’s ability to be paid hinges upon successfully capturing, uploading, and verifying these photographs, regardless of whether the service recipient objects to the photography or facial recognition process. Many EVV schemes also use GPS to track caregivers’ locations, and by extension, the location data of the disabled people they work with. Often, the caregiver and care recipient both must prove they’re at the recipient’s home to properly verify the visit, which can limit the disabled person’s ability to leave home and engage in community activities.

While EVV was initially required as an alleged attempt to prevent public benefits fraud, whatever preventative benefit it may provide (most of which seems, at this point, to still be largely speculative) is largely outweighed by its detriments. On the financial front, according to the Guardian, the state of Arkansas secured only three convictions for personal care-services fraud in 2020, recovering a total of $1,930; as of mid-2021, EVV had cost the state $5.7 million to implement. Outside of this, EVV creates a system in which disabled people who require Medicaid-funded in-home services are frequently surveilled by the government; their photographs or location data are uploaded to apps via their caregivers’ personal devices; the services they need and are entitled to are disrupted; and their independence, freedom to leave their homes, and legally protected right to participate fully in their communities is hindered. Disabled travel blogger and professional editor Karin Willison has written that “Electronic visit verification is the equivalent of putting an ankle monitor on people with disabilities and telling us where we can and can’t go. It turns having a disability into a crime.”

The harms that disabled people already experience as a result of EVV would only be amplified in the case of a data breach or cyberattack. A breach that impacted apps used for EVV could result in unauthorized disclosure of a disabled person’s extremely sensitive data—which, again, they likely didn’t wish to share in the first place. And the harms stemming from EVV, like many other issues that exist at the intersection of disability and technology, not only disproportionately affect disabled people, but particularly those who are multiply marginalized: in this case, disabled and low-income individuals who qualify for Medicaid, many of whom are Black and brown. Furthermore, disabled people are affected on both sides of this issue, as care workers are often disabled themselves, as well.

The solution lies largely in the hands of policymakers. Congress could choose to reverse or reduce EVV requirements. It could also pass federal privacy legislation, which might then compel certain states to revise their EVV policies to better protect privacy. Even without federal policymaking action, because there is some leeway in the existing law, states could choose to implement a form of EVV that requires and collects as little data as possible—for example, rather than collecting location data and requiring real-time photos of caregivers and those receiving care, a state could choose to have a form of EVV that requires only that a caregiver call in, perhaps using a landline instead of a smartphone (although landlines are being phased out, which limits the pragmatism of a solution such as this one). Limiting data collection to only what is absolutely and directly relevant and required to accomplish a particular purpose—a practice known as data minimization—can help to mitigate at least some of the data privacy and security concerns that disabled people currently face.

While electronic visit verification is but one of a number of issues within the tech policy world that implicates the civil rights and liberties of disabled people, relatively little conversation in that world centers centers disability, or even considers disabled people. It is only by prioritizing the needs of disabled people in all aspects of technology policy that the noble intention of the ADA—equality for disabled people, in all arenas of American life—can fully be realized.

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The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients