Families of medically fragile children fear NC’s Medicaid cuts will drive away home nurses | Opinion
AI-generated summary reviewed by our newsroom.
- NC Medicaid cuts reduce home nursing pay, risking shortages for fragile children
- Families warn nurse departures will force parents to quit jobs or institutionalize kids
- Lawmakers stall on funding; advocates say restoring Medicaid rates saves costs, lives
To make up for a shortfall in funding from the legislature, North Carolina is cutting its Medicaid payments to health care providers by 3% to 10%, but for Julie Crockett the potential loss is much bigger.
It could mean losing the nursing care that sustains the profoundly disabled 8-year-old girl she regards as her granddaughter.
Sophia, the granddaughter of Crockett’s boyfriend, has TBCK syndrome, an extremely rare genetic disorder that causes weak muscles, brittle bones and seizures. She depends on a tracheostomy, a ventilator and a feeding tube and, unable to speak, she communicates using an eye-gaze device.
Crockett and Sophia’s mother care for her, but they need the help of home health care nurses paid for by Medicaid. The government health insurance plan has approved Sophia for 16 hours of nursing care a day. But if home health care nurses have their pay cut, they may move on to better paying hospital jobs.
“My fear is we will lose our nursing and it’s just going to be a devastating cascade of events,” Crockett said. “If we lose our nursing, then I’ll have to quit my job. So her mother would have to do the nights. I would do the days.”
Without her job as a registered dietitian, Crockett said she might lose the Greensboro home where she, her boyfriend, Sophia’s mother and Sophia all live.
“Then Sophia would have to go into a facility, when our entire goal has been to keep her at home where we know her, we love her,” she said. “Her nurses know and love her and recognize her different cues because she’s nonverbal. It’s terrifying.”
In Rockingham County, Claudia Yannotti is worried, too. Her 9-year-old son, Boston, was born with an extremely rare brain disorder. He too breathes through a tracheostomy tube and is nourished by a feeding tube. Nurses have cared for him at home since his infancy.
Yannotti is deeply grateful for the Medicaid program that makes at-home nursing care possible. “It is so important for these medically fragile children to grow up at home with their parents,” she said.
Now she’s concerned that funding cuts may cause nurses to leave the program, reducing the care available to her son and others like him.
“These nurses who’ve been so good to our son, their livelihood is at stake,” she said. “Our nurses can’t just run on an ‘atta boy’ and a ‘thank you.’ They have to be compensated in pay as well.”
Behind the Medicaid cuts is a dispute about how to provide additional Medicaid funding. State lawmakers agree that more funding is needed, but the state House and Senate disagree about what else should be in legislation that would provide the funding. The impasse may be broken when the legislature goes back into session Oct. 20.
In the meantime, home care for the disabled remains in jeopardy.
If more lawmakers looked closely at what Medicaid provides, they wouldn’t allow the cuts that began on Oct. 1. They would pay now and gladly. Not only is it more humane to make it possible for profoundly disabled children to live at home, it also is less costly than placing them in institutions.
Crockett said that through therapy, Sophia has been able to say one word – “love.”
“She would not be here if it were not for the Medicaid program,” she said. “There is no way we could do for her what has been done by these nurses.”
Associate opinion editor Ned Barnett can be reached at 919-404-7583, or nbarnett@newsobserver.com
This story was originally published October 6, 2025 at 3:25 PM.