Every time I see headlines about states cracking down on “fraud” in Medicaid programs, I feel that familiar tightening in my chest. I am not surprised. I am worried, because I know exactly who gets hurt when policymakers start talking about fraud.
The public version of the explanation is well known. There is too much fraud, the system is being abused, something has to be done. But underneath that rhetoric is a quieter, more dangerous assumption. When disabled people have family members as paid caregivers, the arrangement itself is suspicious.
I’ve lived my whole life surrounded by the reality these policymakers seem to ignore. Because of my cerebral palsy, I’ve needed care since childhood. I grew up in Massachusetts, where I had a firsthand look into how fragile the system is, and how much caregiving falls on families.
Parents of minor children cannot be paid for the care that they provide under the PCA program. So for nearly two decades, my mothers did the work of full‑time caregivers with no compensation, and no recognition. At the age of 18, my mother finally became my PCA and that income helped our family. It wasn’t extra. It wasn’t indulgent. It was just a small token of recognition for all she’d already been doing.
The thing that never gets talked about in political debates is what it’s like to depend on someone that much. My moms are not nurses or doctors, but they are my moms. They care about me more than any professional ever could. They know my body not because they are trained, but because I am their child.
For example, if I have someone like my mom, helping me get dressed, her touch is maternal, safe and familiar. My moms have helped take care of me for nearly 27 years. However, when a personal care assistant helps me, their touch is much rougher than my mom’s.
That’s why the framing of family caregiving as fraud feels so personal. If politicians suspect that hiring a family member is somehow fraudulent, they are referring to people like my mothers. They’re talking about people who are disabled like me. For me, I’d rather hire family members and friends because the revolving door of strangers seems never ending.
This is not only my story. Sue Root of Colorado is a parent of an adult with medically complex needs. For Sue, it’s not a loophole to be paid for providing such care. It’s a lifeline. It’s the only way Amy, her daughter, who sustained a brain injury during childhood, can stay safe at home.
Suspicion doesn’t protect disabled people. It harms us. It disrupts our support systems, which keep us alive. It tells family caregivers that they are a liability to the labor market. It also tells disabled people that our family members aren’t worthy of recognition for the care they provide.
Sources:
Hixenbaugh, Mike. “RFK Jr. Draws Backlash for Ripping Medicaid Programs That Pay People to Care for Relatives.” NBC News, 23 Apr. 2026, https://www.nbcnews.com/news/us-news/rfk-jr-backlash-medicaid-home-care-programs-fraud-rcna341483.
Schreiber, Melody. “‘Just cruel’: Medicaid Halt in California and Minnesota Plunges Caregivers and Disabled People into Uncertainty.” The Guardian, 3 Aug. 2026.