Pictured above: Stacy Staggs, her husband Shane, and her two daughters, Sara and Emma. (Photo Courtesy of Stacy Staggs)
‘Medicaid is the thing that keeps Emma safe and alive, and in our home,’ said Stacy Staggs.
By: Rebekah Sager
This story was originally published on North Carolina Independent
Stacy Staggs’ twin daughters, Emma and Sara, were born 12 years ago at just 27 weeks and 4 days. Since that day, Emma has required virtually around-the-clock care to survive, and without a Medicaid waiver program, there’s no way the family could pay for her care.
Staggs, who lives in Charlotte, told the North Carolina Independent that during her pregnancy, she was diagnosed with preeclampsia, a disorder that can raise a pregnant person’s blood pressure to dangerous levels and cause organs to shut down. Staggs was urgently hospitalized, and the babies were delivered via cesarean section.
“My daughter Emma weighed 1 pound 9 ounces, and Sara weighed 2 pounds, which is the amount of my meatloaf recipe,” Staggs said. “Like, teeny tiny babies, they were immediately intubated and rushed to the neonatal intensive care unit, and just nothing was assured. We did not know how it was going to go, and especially the first six weeks were incredibly tenuous and scary.”
Staggs, an advocate with the children’s healthcare lobbying group Little Lobbyists, said Sara loves music and communicates through song lyrics. “So, like, if she wants to eat pizza, she’ll sing a song about pizza.”
“Emma has her interests: She loves Barney, she loves ‘Sesame Street,’ she loves dancing and music. Sara has taken her love of music and now she’s learning to play a variety of different instruments by ear. She can play a number of songs on the guitar and the piano. We just got her a drum set for Christmas.”
Both Emma and Sara have complex medical needs and disabilities.
Emma developed a severe infection as a newborn, and the Staggses were told there was a chance she could die. Staggs explained that Emma had a lot of difficulty breathing on her own. Doctors were not able to remove her from a ventilator; she had a tracheostomy when she was nearly 3 months old, a procedure that creates an artificial airway. Emma has never spoken a word due to vocal cord paralysis. She left the hospital with what Staggs called “hospital-level support in place” at home.
Sara’s health issues are primarily developmental. She has autism, and her care can be covered under her father Shane’s employer-paid health insurance.
Emma’s healthcare is covered under North Carolina’s Community Alternatives Program for Children, or CAP/C waivers.
The state-administered program was established under a provision of the federal Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982 that is known as the Katie Beckett Medicaid waiver option. The law allows states to waive Medicaid rules in order to extend coverage to eligible children with disabilities, regardless of family income, allowing them to receive in-home and community-based care rather than hospital or facility-based treatment.
Staggs said she is terrified of any kind of break in health insurance coverage of the extensive support Emma needs.
“We are living under this constant specter and fear, not of her losing Medicaid eligibility, because her needs are very clear, but the worry is that the Katie Beckett waivers, which exist in every state, and in North Carolina it’s called CAP/C, but they are optional funded programs, and what that means is they’re on the chopping block as the state comes through with their annual budgets,” Staggs said.
The One Big Beautiful Bill Act, signed into law by President Donald Trump in July 2025, is slated to slash federal funding for Medicaid and other healthcare programs by roughly $1 trillion over the next decade, according to the Center for American Progress. The legislation puts health coverage at risk for an estimated 80 million lower-income Americans who rely on the program, including children, people with disabilities, and nursing home residents.
In the past, Trump has said Medicaid would not be touched, but in April 2026, he said at a closed event that was captured on video: “It’s not possible for us to take care of daycare, Medicaid, Medicare, all these individual things. They can do it on a state basis. You can’t do it on a federal. We have to take care of one thing: military protection. We have to guard the country.”
The budget law introduced new work and filing requirements for people to maintain eligibility for Medicaid coverage.
Although the work requirements would not likely impact Staggs’ family, the new law requires states to provide verifiable eligibility for some Medicaid users with “a redetermination once every 6 months.” A Robert Wood Johnson Foundation analysis published in March estimates that between 2 million and 3.1 million people could lose Medicaid coverage due to challenges involved in complying with more frequent eligibility checks.
“What it looks to me like Republicans at the federal and even the state levels are doing is not making major changes on paper. They’re not changing the laws; they’re not changing the eligibility under which Emma has Medicaid, but what they’re doing instead is adding layers and layers and layers of state and county cost that the federal government had been providing before,” Staggs said. She said that the law adds not only changes to work requirements, which wouldn’t apply to Emma, but also biannual recertifications of Medicaid eligibility, which would result in additional work for Staggs and her family.
She said she’s concerned that all the extra paperwork could create bottlenecks, which would then become delays and potentially gaps in coverage of Emma’s care.
“It is the thing that steals my sleep. It keeps me from calm, and it affects me in my waking hours as well. There is no escape from the anxiety and the fear that the people who are making these decisions fall into one of two groups: They either don’t understand or they flat out don’t care,” Staggs said. “I don’t have the bandwidth to sort them out, because the effect is the same. If Emma loses Medicaid, I don’t care if the legislator that cast a deciding vote was someone who didn’t understand or who knew and didn’t care. The effect is the same: I will lose my daughter. And not just me, but there’s 3 million people in North Carolina who require this support, and it’s not because they’re not already working, it’s not because they’re — there’s no luxury in this life, nobody is high on the hog while on Medicaid.”
When it comes down to it, her kids are just kids, Staggs said, and the services they receive allow them to live as normal a life as possible.
“They are whole, entire children and far beyond their list of medical diagnoses. Medicaid is the thing that keeps Emma safe and alive, and in our home, but it’s also the thing that lets her grow up with us, and get to adulthood, and all of the wonderful things that come with that,” Staggs said. “And I think there’s a lot of focus on the very stark sphere, which is real and ongoing and crushing, honestly, but I would love to see more attention paid to who these kids are as individuals and their humanity, the things that they bring to the world.”
The North Carolina Independent is a project of American Independent Media, a 501(c)(4) organization whose mission is to use journalism to educate the public, giving them the information they need about local and federal issues. Read more at The North Carolina Independent.
