By Rose Hoban

Natalie Taylor’s pregnancy was going pretty well. The Elon University professor was feeling good and getting excited about having her first baby with her husband Eric Hart.

But at 18 weeks, Taylor’s water broke, leaving her son with too little amniotic fluid for his lungs to develop properly. Taylor managed to hold onto her pregnancy for three more months, her son Collier was born at 32 weeks with lungs that were severely underdeveloped.

shows a tiny baby with tubes and wires and an enormous set of headphones around his head.
After Natalie Taylor’s water broke at 18 weeks, her baby, Collier, did not have enough amniotic fluid to protect his lungs. So, when he was born at 32 weeks, they were severely underdeveloped. Photo courtesy: Natalie Taylor

“Collier spent the first 15 months of his life at Duke Hospital,” she said. “447 days at Duke. We drove from Burlington to Duke every day to spend as much time with him as we could.”

Despite being told at some points that Collier was going to die, he hung on to be discharged home, but with a catch. The little boy has a hole in his neck that he breathes through and he uses a ventilator and requires nursing care at night. Collier also gets fed through a tube that goes directly to his stomach.

Miraculously, Collier’s now a playful three-year-old who terrorizes the neighborhood on a special tricycle with a trailer for this ventilator.

“He’s just blossomed and thrived since he’s come home,” Taylor said, noting he’s gone from 30 medications down to three.

“I saw one explanation of benefits for his care where one line item was $5 million for one part of his hospitalization,” Taylor said. “That was just one line. We’re talking in the millions for his care… I don’t even know.”

Taylor and her husband both have jobs with insurance. She said that before the Affordable Care Act, Collier would have bumped up against lifetime caps that would have been the feature of many pre-ACA policies, and that could return with the law’s repeal.

little boy with a large grin pedals his big wheel with a trailer attached, you can see the oxygen tanks, with tubing going from his neck to the trailer.
Collier is now an active three-year-old who rides around a tricycle fitted with a trailer for his oxygen and ventilator supplies. Photo credit: Natalie Taylor

Currently, they pay their premiums and lots of out of pocket costs, while North Carolina Medicaid picks up part of the tab for Collier’s care: nurses, therapists, equipment, the cost of a generator in case the power goes out. Nonetheless, Taylor said their savings are pretty well shot.

And she’s frightened.

“This bill in the Senate…” she said referring to the Better Care Reconciliation Act rolled out in the U.S. Senate last Thursday, “if they remove supports, for example, our nursing care, then we’d have to quit our jobs or have to put him in an institution.”

‘Calling, faxing, emailing, tweeting, Facebooking’

Since the Congressional Budget Office “scored” the Senate’s version of the American Health Care Act on Monday, advocates for people with disabilities have swung into action. Taylor is one of them, a member of a new group calling themselves Advocates for Medically Fragile Kids NC that came together last year to fight against cuts to their kids’ care  proposed by the state’s Department of Health and Human Services. Most of the members of AMFK are moms like Taylor who have used social media to find one another and get themselves heard.

Shows four children all dressed up for at a wedding.
The Hobbs children (l to r) Madison, Melanie, Michael and Meredith. All but Melanie have mitochrondrial disorder, a genetic disease which can cause muscle wasting, fatigue pain and a host of other problems. The three who have the disease each sleep on a ventilator at night and require nursing care. Photo courtesy: Jenny Hobbs

“I’ve been calling, faxing, emailing, tweeting, Facebooking and mostly trying to send information to bigger organizations that have a more unified push,” said Taylor, who identifies as a liberal.

The group cuts across party and philosophical lines, said Jenny Hobbs. Three of Hobbs’ four children have a genetic disorder that requires extensive nursing care through the same Community Alternatives Program for Children (CAP/C) program that cares for Collier Hart.

Hobbs is a lifelong Republican from Sen Richard Burr’s hometown of Winston-Salem, her in-laws even had an event for Burr at their house. But she’s been shaken by his support of the two ACA replacement bills offered this year by Republicans in the U.S. Congress.

“I don’t know what kind of position they thought they were taking,” Hobbs said of the bills. “Certainly, this has been awakening the disability population to the fact that we can’t sit around and let people be treated so callously.”

Hobbs, who calls herself pro-life, said that she believes if her kids can survive to adulthood, they have a good chance of being productive citizens.

“But that shouldn’t be the litmus test of whether we treat or not,” she said. “Being a pro-life includes life at all stages, whether before life, born with a disability or end-of-life care.”

shows a little girl in a mask holding a stuffed toy that's also wearing a mask.
Last year, Madison Hobbs developed melanoma on her abdomen. Her mom, Jenny, says the cancer was likely abetted by Madison’s weak immune system and says she hasn’t really bounced back from the illness. Photo courtesy: Jenny Hobbs

Hobbs has called both Sens. Burr and Thom Tillis and made visits to their offices in Washington to talk about her concerns with the AHCA and now the BCRA. Neither are able to go to Washington today, where people with disabilities aim to make their presence felt on Capitol Hill.

“Politicians are saying ‘I won because I said I was going to repeal the ACA,’ but they didn’t say they would repeal Medicaid,” Hobbs said. “When I’ve heard politicians speak about Medicaid, they talk about the people who need to pull themselves up by their bootstrap, not realizing that Medicaid is predominantly for children and people with special needs.”

And Hobbs, like Taylor, said she’s scared for her children. Medicaid foots much of the bill for the nurses who monitor her children’s ventilators at night.

shows a woman with a little girl clinging to her side.
Madison and Jenny outside Sen Burr’s DC office in March 2017. Photo courtesy Jenny Hobbs

“We do have private insurance but Medicaid picks up deductibles and copays and also there are several medications that our primary insurance doesn’t cover that Medicaid does,” she said. “That includes 111 hours of nursing per week per child; we staff 333 hours per week between three kids. It’s quite the endeavor.”

“Our kids are on several medications that cost tens of thousands of dollars,” she said, worrying about lifetime maximums that would return if the ACA were repealed. “I don’t want to be put in a position of choosing what we are and aren’t going to address.”

Getting active

“We’ve seen advocates in at least a dozen states engaged in direct action and collective action,” said Corye Dunn, the policy director for Disability Rights North Carolina. “We’ve seen sit-ins and die-ins and rallies and marches and speeches.

“What we haven’t seen is Republican senators sitting down to talk to people with disabilities.”

Dunn said the families of the 2,300 kids on the CAP/C program have become a potent political force this spring. That’s because these folks see clearly what they have to lose.

shows some people in wheelchairs in front of a buiding, others laying on the sidewalk
Activists protest in front of Sen. Thom Tillis’ Raleigh office Tuesday. Photo courtesy: Disability Rights NC

“Without those supports those children would almost certainly spend their lives in hospitals or nursing homes and we know that means a shorter life expectancy,” she said.

Dunn was present yesterday outside Tillis’ Raleigh office, pressing him to vote no on the bill. Tillis has not stated a position either way on the bill yet.

“Doing nothing as Obamacare collapses is not a viable policy option for Congress,” said Tillis in a statement sent by his office Tuesday. “Changes are currently being made to the Senate health care reform legislation, and I look forward to reviewing improvements to the bill.

“As I’ve said repeatedly, any replacement plan must be a net improvement over Obamacare.”

Burr, for his part, has signaled his enthusiastic support for the current Senate bill. “While not perfect, the bill does provide the funding we need to support our most vulnerable North Carolinians,” he said in a statement on his website.

And while Burr’s statement criticized $31 billion in cuts to Medicaid, Dunn pointed out that the BCRA would cut more than $800 billion to Medicaid over the coming decade. She also said that federal caps to Medicaid – even though most don’t take effect until 2021 – would start affecting people sooner.

“We know that state budgeting will be impacted by federal policy changes,” Dunn said. “We know that provider investments in infrastructure will be affected by federal policy changes. We know that planning in North Carolina for our entire Medicaid structural overhaul that we’re engaged in right now will be affected by federal policy changes.”

Elaine Nell, another mother of a medically fragile child, said if the bill passes, the groups would be tireless in campaigning against Burr and Tillis.

“They better believe we will never forget how they vote on this,” she wrote in a text message.

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Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...