The other day I filled out my annual EVV (electronic visit verification) exemption form. In my home state of Massachusetts, MassHealth has utilized EVV for consumers of the PCA (Personal Care Assistant) program. I qualify for an exemption because my PCA lives with me.
EVV is designed to eliminate waste, fraud, and abuse in the Medicaid system by requiring caregivers of disabled people to “prove” that their client is receiving the care they are entitled to. Under federal law, all states must require people who provide certain home and community‑based services to use some electronic visit verification. Noncompliance means their Medicaid programs risk being underfunded.
But systems like this, no matter how well-intentioned, often make it harder for disabled people to get the support they need. They add more layers of oversight and red tape that fall on disabled people and their caregivers, who are already managing challenging daily tasks.
For many, electronic visit verification (EVV) turns into just another administrative burden in a life full of them. Disabled people constantly juggle medical appointments, insurance forms, care coordination, and the ongoing effort to advocate for themselves in systems that rarely consider their needs. Adding EVV means more forms, more deadlines, more rules to remember, and more chances for things to go wrong. Even if someone qualifies for an exemption, as I do, that exemption becomes another annual task—another reminder that access to care is conditional and needs ongoing justification.
What makes EVV even harder to accept is that it doesn’t stand alone. It’s part of a larger trend where disabled people are constantly asked to prove, justify, and re-justify their needs. This same issue arises with health insurance denials, prior authorizations, and countless appeals. You may have a doctor who understands your condition thoroughly, yet an insurance company can still claim you don’t “need” a medication, treatment, or piece of equipment you depend on.
Each denial is another struggle, another pile of paperwork, another reminder that the systems meant to help you are built on doubt. When EVV is added, it reinforces the sense that your life is always under scrutiny—that access to care is never guaranteed. Getting the care you need is something you must always justify.
Beyond the paperwork, EVV sends a harsher message: disabled people and their caregivers are seen as suspicious. The system operates on the belief that fraud is likely unless proven otherwise. This mindset can feel dehumanizing. Instead of being recognized as the expert on your own needs, you’re treated as a risk. This reflects a long history where disabled individuals are scrutinized, doubted, and forced to prove their legitimacy to powerful institutions.
EVV also undermines the independence that home-based care is supposed to ensure. The personal care assistant (PCA) program aims to give people control over their care—deciding who helps them, when, and how. But EVV imposes strict rules on something that should be flexible. Care doesn’t occur in neat, clock-in/clock-out segments. It happens in the flow of daily life when it’s most needed. Unfortunately, EVV systems often fail to capture that reality, compelling people to change their lives to fit the system instead of the system adjusting to their needs.
Then there’s the anxiety that comes with it. When compliance is complicated, people worry about making mistakes that could threaten their services. A missed verification, a misunderstood requirement, or a delayed form can feel devastating when your care—and independence—are vulnerable. Even if you’re exempt, the system creates an atmosphere of stress because you know how fragile your support can be.
What adds to the frustration is that policies like EVV are often created without significant input from those most impacted. Decisions are made by people who may never have relied on a PCA or dealt with Medicaid. Consequently, the systems they develop tend to favor administrative ease over human dignity. Meanwhile, those who commit large-scale Medicaid fraud are rarely individual disabled people or their caregivers; yet they are the ones who bear the burden of compliance.
Ultimately, EVV reflects a broader issue: systems aiming to prevent misuse of resources often impose additional demands on marginalized groups. Disabled individuals, who already face numerous obstacles, end up with more paperwork, more surveillance, and more emotional strain. Filling out an exemption form may seem minor, but it signifies something much larger—a reminder that even the support you deserve comes with conditions, and that navigating disability frequently means facing systems that complicate rather than simplify life.
Sources:
Aboulafia, Ariana, and Henry Claypool. The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients. Slate Magazine, Graham Holdings Company, 26 July 2023, slate.com/technology/2023/07/ada-anniversary-disability-electronic-visit-verification.html.
“About EVV.” Tempus Unlimited, Tempus Unlimited, 7 Feb. 2024, tempusunlimited.org/about-evv/.