The current EVV system, combined with a total lack of support services tracking, is a complete failure when applied to the realities of live-in caregiving. This app treats our homes like factories and our loved ones like shift numbers, completely ignoring basic safety, medical realities, and human dignity.

I recently read a heartbreaking post on this forum from a mother caring for her daughter with ALS, describing the absolute panic of having to frantically rush to unstrap medical leg braces just to beat a countdown buzzer before the app forced a clock-out. I am dealing with that exact same terrifying stress level.

My 27-year-old son has Lennox-Gastaut syndrome, which causes violent drop attacks, myoclonic seizures, and severe muscle stiffness. These life-threatening episodes happen without any warning signs, coming completely out of nowhere at any given time of the day or night. My job as his sole full-time caregiver is to provide constant, high-alert standby safety monitoring.

Yet, this tracking system expects me to physically stop mid-task, walk away, and handle a digital clock dashboard on a smartphone just to use the restroom, run a basic errand, or take a quick 5-minute shower to wash off the caregiving sweat. If I am clocked out for a quick restroom break and hear that loud, terrifying boom from a sudden fall, I am going to sprint out to save him regardless of a time clock. Forcing us to clock out for basic personal hygiene means we are expected to choose between administrative compliance and basic household safety. If I slip and fall on a wet floor running to catch him while "off the clock," we are both left hurt and helpless.

To make matters worse, we are being drowned in duplicate paperwork expectations while being left entirely stranded by the care management organizations. We are told we must handle a clunky, duplicate paper "Plan of Care" form, yet I haven't even had an active, consistent Moms in Motion service facilitator to come and make their rounds since April. Facilitators constantly quit, leaving families completely in limbo with zero communication or guidance on when a replacement will ever show up. Making us check off identical tasks on a smartphone app dashboard while forcing us to navigate missing facilitators and administrative confusion serves no purpose other than to make dedicated caretakers feel babysat, abandoned, and untrusted. We are already running on 5 to 6 hours of sleep while keeping vulnerable individuals alive.

DMAS and the state representatives need to step out of their offices, come directly into our homes, and see exactly what live-in caregiving looks like. We need immediate, permanent system changes—including stabilizing our service organizations so we can actually keep our assigned coordinators. We also need the state to bring back the ability to clock in and out on a laptop web browser. Being able to log our timecard hours on a computer allows us to manage our documentation properly without the constant anxiety of rushing to beat a mobile time clock buzzer. Our disabled loved ones deserve protection, and their caregivers deserve basic respect!!