These NC kids rely on Medicaid to survive. Trump’s cuts could force them out of their homes.

A Medicaid waiver program helps Kinsley Stadler and Emma Staggs thrive in their homes despite significant disabilities. When their moms went to DC to implore Republicans in Congress not to pass huge cuts to Medicaid, some GOP staff locked their doors while others rolled their eyes.

Editor’s note: This article has been updated to include a response from Rep. Addison McDowell’s office after publication. 

Kinsley Stadler and her friend Emma Staggs are North Carolina kids. They go to school, play with their friends, and sleep in their rooms each night, their families close by.

Kinsley’s middle name is Rae, another word for sunshine. 

Kinsley, 6, and Emma, 11, are also among the 3,751 North Carolina children with severe disabilities who rely on Medicaid for the expensive and extensive health care that allows them to live at home with their families rather than in some facility far away. 

Medicaid pays for their feeding tubes. It pays for the home nurses who go with them to school and watch them while their parents work. It pays for the therapy that builds their strength and skills.

It pays for these things because their parents’ insurance does not. 

The children’s parents made two trips to Washington in the last week of June and first of July to ask their Republican representatives in Congress to vote against the Trump administration’s budget bill that cuts roughly a trillion dollars from Medicaid and could strip Kinsley and Emma of the health care that gives them a life.

The cuts in the budget bill endanger North Carolina’s recent Medicaid expansion and the 670,000 low-income residents who got health insurance because of it. The loss of funding is so big that each state will also have to either find billions of dollars in their own budgets to make up for them, or cut existing services significantly. Despite Republican assurances, since the Medicaid programs that keep Kinsley and Emma in their homes are not required by federal rules, they could be among the first to go.

“We’re just sharing our story, asking them to vote no against the bill. And really trying to stress the importance and the risks for our kids if these cuts to Medicaid go through,” Emma’s mother, Stacy Staggs, said on July 2, a day before the House passed the final version of the bill.

‘Real stories’

The families were part of a group called Little Lobbyists, a national advocacy group for children with disabilities whose aim is to harness “the power of real stories to change hearts and minds.” Over the two trips, Kinsley, Emma, and several other Little Lobbyists children, walked or rode in their wheelchairs through the halls of Congress, stopping at each office of their state’s Republican elected officials. 

Staff for Reps. Greg Murphy and Tim Moore listened politely, Stadler said, but declined to schedule a meeting with the lawmakers. 

Sen. Ted Budd’s staff members rolled their eyes, Stadler said, and Rep. Mark Harris’s team kicked them out, then locked the office door. 

The staff didn’t always ignore them. They complimented their children’s hair bows. They said how cute they were. They patted their heads.

Murphy is a physician and had expressed concerns about the cuts in public. His staff told Kinsley and Emma that he shared their concerns.

“We’re taking time out of our summer where she should be getting to be home and being a kid, and not having to come here and advocate for the healthcare that helps keep her alive,” Alexis Stadler, Kinsley’s mother, said. 

Every close analysis of the numbers warned that millions would lose their health coverage or see prices increase. Staggs and Stadler tried to put faces to consequences. Their daughters’ faces.

“We know that their vote is going to endanger our kids, and it’s very hard to stop myself from using extraordinary profanity,” Staggs said. “These are the lives of our kids.” 

Soon after the families left his office, Murphy and every other Republican in the House voted for the bill. Sen. Thom Tillis was the only Republican lawmaker from North Carolina to vote against it.

‘She has fought since birth to be alive.’

Kinsley Stadler was born in Waxhaw, NC with neurofibromatosis, a genetic disorder which causes tumors to grow in the nervous system. But she immediately struggled in ways the diagnoses couldn’t explain. 

“When she was born, it was clear that something else was wrong and we weren’t really sure. She couldn’t eat, she had a really hard time breathing,” Alexis Stadler said. 

“When your child is going through a lot of testing and no one really knows what’s wrong with her, that’s really expensive.”

She and her husband went deep into debt.

“We were drowning,” Stadler said. 

Kinsley Stader, 6, on a trip to Washington DD to implore Republicans in Congress not to cut Medicaid. (Matthew Cortland/Little Lobbyists)

Stadler is a school counselor, her husband works at Cisco, the tech company. They had good health insurance, but it did not cover all of Kinsley’s care. When Kinsley was three months old, the family applied for North Carolina’s Community Alternatives Program for Children (CAP/C), a Medicaid waiver program that helps pay for home care. 

They were denied. 

“They said she wasn’t sick enough,” Stadler said.

“She was on a feeding tube. She had been in the hospital multiple times. She would choke on her own saliva ..  So she needed constant supervision and no daycare is gonna take a child like who has those issues.”

When Kinsley was 10 months old, doctors found the problem: hypophosphatasia, a metabolic bone disease. Soon the family reapplied for the waiver and were approved. Things got better fast, Stadler said.

“We got more therapies, we got more resources for her. She wasn’t ending up in the hospital as much.”

Then when Kinsley was 3, doctors found a cancerous tumor in her brain. 

She started on chemo, but it was also dangerous to her small body. It made her so sick, her mom said, “we almost lost her.” But Medicaid helped her improve at home instead of languishing in a facility far from her mom, dad, and sister.

Today, she still needs constant supervision, and Medicaid pays for a nurse to help at home and go with her to school.

Her parents could not afford the care keeping her at home if her Medicaid benefits go away. Their insurance doesn’t cover her wheelchair, her feeding tube supplies, or her formula. 

“Medicaid is what has provided all of these things that are helping her not just only survive, but thrive and be a part of her community. If she loses her Medicaid, I really don’t know what’s going to happen for us,” Stadler said.

She added: “She really is so full of love and happiness despite everything that she has been through. She has fought since birth to be alive.”

Stadler and Staggs shared their experiences over the phone after a long day trying to get Republicans in Congress to listen. Kinsley’s voice was audible in the background.

As Stadler talked, Kinsley tried to get her attention.

“Yes baby?” Stadler said to her daughter.

“I love you,” Kinsley said.

“I love you,” Stadler said.

‘Medicaid is the foundation under which all of this is built.’

Emma Staggs and her twin sister Sara were born about 11 weeks premature in Charlotte. They spent months in the neonatal intensive care unit. 

Emma, now 11, still needs a feeding tube and around-the-clock care.

“It’s unsafe for her to swallow,” Stacy Staggs said. 

Her primary insurance doesn’t cover Emma’s feeding tubes or her specialized formula, which costs $3,500 a month. But Medicaid does.

“Literally every minute of her day is affected by Medicaid,” Staggs said. “[It] is the foundation under which all of this is built.”

Emma Staggs, 11, at home. (Photo courtesy of the Staggs family)

If North Carolina cuts the waiver program because of the budget bill, and Emma loses her care, the consequences would be a deluge, not a trickle.

“It’s so immediate for her that if she loses Medicaid access, I could start a clock as to when she would run out of formula and we’d be forced to surrender her to a hospital,” Staggs said.

But Staggs will do whatever it takes to stop that from happening, she said.

“Instead our family will go broke. We will declare bankruptcy, do what Americans have done for decades, and beg, borrow, and steal to keep our daughter alive and safe at home with us.”

Before the budget bill was passed, state officials expected the number of children needing the CAP/C waiver to grow to 6,000 by 2028.

‘She is not waste, fraud, or abuse’

Republicans have said that at-home programs will not be affected by the cuts. Health professionals, medical experts, and simple mathematics disagree.

“The math doesn’t add up,” Staggs said.

Rep. Moore was North Carolina House speaker when he helped the state pass Medicaid expansion in a huge bipartisan vote in 2023. As a Congressman, he voted for a bill that could unravel it.

His staff “was very kind,” Staggs said, but they kept talking about work requirements and able-bodied men defrauding the Medicaid system.

“There’s a real boogeyman that Republicans have created, around fraud, waste, and abuse,” Staggs said.

“We made a point to engage with Republican offices, so that we could say, ‘look, my daughter, she’s standing right next to me, she’s 11 years old, she is not waste, fraud, or abuse. She’s a kid.’”

Moore’s staff told her the cuts wouldn’t affect people with certified disabilities, because that’s who they claimed to be protecting Medicaid funding for, Staggs said.

“I actually asked if Tim Moore could give us a statement with that affirmation and also point us to the text language of the bill so that we could relax our shoulders a little bit and, you know, stop being panicked about what we know is coming.”

Moore’s staff declined to do so.

‘Hello, how are you all?’

In a separate interaction, several members of the Little Lobbyists group said that when Rep. Addison McDowell saw them in the hall, he quickly walked away. After publication of this article, McDowell’s office described that description as “a misleading characterization of the Congressman’s actions.” 

McDowell was returning to his office when he saw the children, Charles Russell, McDowell’s communications director, said in an email.

“He smiled and said, ‘Hello, how are you all?,'” Russell said.

Then, all sides agree, his wife, Rachel McDowell, spoke to the group instead.

“The story reads less like reporting and more like advocacy—and using children to push a narrative is inappropriate,” Russell said.

But Rep. McDowell quickly left the scene, Staggs and Stadler said.

“I don’t know who he thinks he interacted with,” Staggs said in a follow up conversation after publication. “He never broke his stride. I didn’t hear any greeting.”

“We did talk to his wife,” she said.

Rachel McDowell, Staggs added, talked to them about the importance of faith.

Russell did not respond to a questions on Tuesday about why Rep. McDowell did not speak to the group beyond a hello, or about whether the Congressman would try to address their concerns that Kinsley and Emma could lose their care because of the bill.

‘FAR FROM OVER’

Congress passed the budget bill, and President Donald Trump signed it into law, but if North Carolina’s Republican delegation thinks they’ve heard the last from Staggs and Stadler, they may soon see their mistake.

The Little Lobbyists contingent is returning to DC this week to knock on lawmakers’ doors, tell them what they’ve done, and explain what it will mean for their Kinsley, Emma, and so many other children like them. 

“Her entire world would crumble” without Medicaid, Stadler said. 

“Kinsley’s a very social child,” she added. “She loves being with other kids, so the idea of taking her out of school because she doesn’t have a nurse is devastating.”

Soon after the House passed the bill, Staggs said in an email to Cardinal & Pine that she wasn’t finished.

“THIS IS FAR FROM OVER!,” she wrote.

“There are no unintended consequences. Not one single Republican will be able to say they didn’t know…Cuz I’m going to tell ’em and I’m going to keep telling ’em and then I’m going to tell ’em a few times after that,” she wrote.

After they get home from DC this trip, they’ll soon head to Raleigh to deliver the same message to state lawmakers, Staggs said. 

“You don’t know tenacity until you’ve met us,” she said. 

Editor’s note: This article has been updated to include a response from Re. Addison McDowell’s office after publication.