As a mother and the Legally Responsible Individual (LRI) for my disabled child, I am deeply frightened by the emotional burden imposed by the new requirement to constantly justify why I, the person who knows my child’s every need, should be allowed to be their paid caregiver through Consumer Directed Services. These proposed amendments claim to offer oversight, but in reality, they terrify families like mine, forcing us into situations that could jeopardize the care and safety of our children.

The thought of putting out an “advertisement” to find someone else to care for my child keeps me up at night. How could I possibly trust a stranger with my child’s life when I know their exact medical history, how they respond to sudden noises, and what to do when they have a seizure? Expecting me to interview candidates—people who have never met my child and will never understand the complexities of their needs—is terrifying. And then there's the job description. How could I explain in writing the role of a caregiver when it’s not just a job but a constant, emotionally draining responsibility? This isn’t just work—it’s survival. I’ve spent years advocating for my child, knowing full well that finding qualified help is nearly impossible. No one will take on this demanding role for the low wages offered. But I will because my child's well-being is my top priority.

I'm scared that if I can’t meet these impossible requirements, my child will be left without proper care. I’ve shared my fears with the Department of Medical Assistance Services (DMAS), pleading with them to see how dangerous these stipulations are for families like mine. This isn’t just about documentation—this is about protecting my child from a situation where they could be in the hands of someone unfamiliar, unprepared, and possibly unable to meet their needs. My child’s life depends on me being there for them, and forcing me to justify my caregiving role feels like an attack on our safety and well-being. The thought of my child being left without proper care is a fear that keeps me up at night.

I’m desperately hoping DMAS will reconsider these frightening requirements. These documentation hurdles are more than just inconvenient—they put families like mine at risk. I want DMAS to understand that this isn’t about cutting costs or ensuring accountability. It’s about protecting vulnerable children from an already broken system. We’re not asking for special treatment; we’re asking for the right to care for our children in a way that keeps them safe. These rules only add more fear to the heavy burden we already carry.