Kennedy Beaver has been going to therapy sessions at least twice a week after she was diagnosed with Noonan syndrome, a genetic condition that stunts development.
The 6-year-old from North Carolina is among 600,000 people in the state who could lose access to healthcare as Congress is poised to approve major cuts to Medicaid funding proposed in President Trump’s so-called “big, beautiful bill,” according to according to the state’s Medicaid office.
“For her, that’s short stature, poor growth, low muscle tone,” her mother, Marilyn, described Kennedy’s condition in an interview with CBS News. “So with that, we became eligible for something called the CAP/C waiver through Medicaid.”
North Carolina’s Community Alternatives Program for Children pays for most of the treatments and medications for patients younger than 20 who have significant medical needs. If the Beavers didn’t have CAP/C, the family says they would be paying over $4,000 a month for treatments and medications — even with private health insurance coverage.
“This is our medication that, without the Medicaid coverage, would be $3,200 a month, because our primary insurance has denied us,” Marilyn said. The family says they also fear that if the proposal on Capitol Hill becomes law, they may have to go back to rationing Kennedy’s treatment.
North Carolina Medicaid Deputy Secretary Jay Ludlam says the cut that’s being proposed at the federal level will “at some point affect the entire program.”
The state’s Medicaid program oversees more than 3 million people who currently receive the healthcare benefits. State officials say if federal funding falls short, the CAP/C program could be on the chopping block.
“When you take $700 billion out of Medicaid nationally … there’s no way to really do that without people losing coverage, without having to change the benefits and the coverage that people get,” Ludlam said.
When asked what she would tell lawmakers in Congress if she had the opportunity to speak with them, Marilyn said they should make changes without cutting services.
“It’s fixing the healthcare system so that everyone in the country can get a level of care that meets their needs,” she said.
Skyler Henry is a CBS News correspondent based in Atlanta. Henry was most recently a correspondent for CBS Newspath in Washington.
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