Inswing of Medicaid Rules Leaves Caregivers Like Her Strained

AT THE ENDS OF HER Wrists, Kacey Poynter Carries Strain

Her hands tremble. She feels weighed down, exhausted, like the muscles in her wrists and shoulders have been pulled taut and strained. She can't really focus on anything else but the task at hand - and normally her task is caring for her son, Sonny.

When Sonny was born, he had an intense breathing crisis and seizure. He was diagnosed with a congenital malformation that impaired his brain development. He has needed round-the-clock care ever since. He can't walk or crawl or eat on his own. Even with consistent care, he struggles to breathe and has to be hooked up to a feeding tube. Sonny is able to take short naps on his own, but to eat, sleep, and breathe at all other times, he needs someone to manage his care - and that someone is mom, Poynter.

Poynter is a paid caregiver, but her pay (disability stipends and food stamps) is not enough to allow her to live independently, so she shares a home with her son in Indiana, where Medicaid is funded with state and federal money. The intent of Medicaid is to provide essential health benefits to those most in need. But Poynter can't just jump in and out of caring for Sonny- her work is 24/7, and because of that, her living situation is now under scrutiny from the state.

The investigation into her situation has been building for several months. And it hinges on the fact that, although Sonny is her son, because she is his paid caregiver, technically, she lives with him out of necessity rather than choice. That makes her living situation a violation of a set of Medicaid regulations that went into effect in January 2022. Called the "community engagement" rules, they essentially limit Medicaid eligibility based on employment requirements and neighborhood factors such as grocery access. The regulations, which have been controversial amidst the ongoing pandemic, are currently being implemented in states across the country.

Sonny needs near-constant medical attention, and Poynter is one of his only hopesends. It makes sense, medically and pragmatically, for her to live with him. But that doesn't align with the new Medicaid rules. And so, as the state of Indiana works to enforce the regulations, Poynter has been told she has until March to find a new home to better adhere to the new eligibility requirements. She has received help searching for new housing, though so far nothing affordable and accessible has come up.

Poynter doesn't know what will happen if she can't find a new home, and with the pressure of constant caretaking, she doesn't have the energy to think about it much. She can't imagine leaving Sonny unattended, but she also can't imagine fitting his vital medical equipment in a new, smaller home. Would Sonny have to go into a nursing home or a hospital if she couldn't figure out a way to comply with the new rules? She doesn't know, but the very real prospect is enough to keep her awake at night.

And during the day, as she rolls out of bed to tend to Sonny, the weight of it all remains with her. Every morning, she lifts him out of his portable playpen that sits right beside her bed. She doesn't have to go far to clock in for work - it's just a roll out of bed, but with that ease also comes the weight of a 24/7 job that feels more impossible with each passing day.