Lydia Nell in the neonatal intensive care unit after her surgery to remove most of her intestines due to necrotizing enterocolitis.
Lydia Nell in the neonatal intensive care unit after her surgery to remove most of her intestines due to necrotizing enterocolitis. Photo courtesy: Nell family

By Rose Hoban

Donna Beckman’s older son Christopher doesn’t do any more chores because her younger son, Thomas, loves to do all of them. And Thomas has never met a tool he doesn’t love.

“Sometimes we have to take the electrical cords off,” Beckman said.

Despite Thomas’ talents, Beckman fully expects that he’ll continue to need help throughout his life, because he has Down Syndrome, a genetic disorder in which a person has a full or partial extra copy of chromosome 21. He has delays in his speech, trouble controlling some of his muscles and some cognitive delay.

Beckman was among other parents who brought their children to the first Down Syndrome advocacy day at the North Carolina General Assembly. But like the other parents pushing baby strollers and dragging their tweens into state lawmakers’ offices, Beckman’s mind was on the legislative process playing out 250 miles away in Washington, DC.

pictures Andrews standing with his smiling son Matthew.
John Andrews and his son Matthew, 16, were at the General Assembly for the Down Syndrome advocacy day Tuesday. Andrews said his family business’ insurance will cover Matthew until he’s 26, but after that, he’s not confident Matthew will find ever employment that will provide him insurance. “I’m torn,” he said when asked about Medicaid. “I’m a Republican. We want responsible spending, but there’s a need. And so, let’s do it responsibility.” Photo credit: Rose Hoban

In Congress, the Republican caucus is marking up a bill that would slash funding to states for the Medicaid program Beckman and other families depend on to support their children throughout their lives.

“Our legislators need to understand that when they make a decision about Medicaid, it has a greater impact on people in the disability community,” she said.

Deep cuts

The American Health Care Act proposes cutting $880 billion from Medicaid over a 10-year period. The proposal would shift the program from one where the federal government matches North Carolina’s spending to one where the state receives a set annual amount for spending. More of the cost of care would be pushed onto states.

The proposed limitations make Elaine Nell’s blood run cold.

Nell’s 5-year-old daughter Lydia is a child who is “medically fragile.” Born prematurely, Lydia developed a dire complication necessitating the removal of close to 80 percent of her intestines. Lydia is able to run and play like other preschoolers, but she dependent on almost continuous nutrition via a feeding tube that she carries around in a flowered backpack.

Because of Lydia Nell's intestinal problems, she requires almost continuous nutrition through a feeding tube that she carries around in a backpack.
Because of Lydia Nell’s intestinal problems, she requires almost continuous nutrition through a feeding tube that she carries around in a backpack. Photo credit: Elaine Nell

If she gets even a little bit dehydrated, or if she gets overheated, it’s off to the hospital.

The Nells receive home health services from a Medicaid waiver program that provides access to a nurse and other supports. The program providing care and services for Lydia is an optional one.

“When lawmakers go in to cut stuff in Medicaid, historically, they’ve gone to programs that are optional,” she said.

The Congressional Budget Office estimated Medicaid would shed at least 14 million beneficiaries by 2026. The bill being discussed in Washington lacks adjustments for population growth, or spending surges that might be required as the result of natural disasters or epidemics.

Or expensive kids like Lydia.

If optional Medicaid programs, like Lydia’s, were to go away under the American Health Care Act, Nell said “it would be huge blow to my family’s ability to take care of [her].”

“I’d fight with everything I have to keep my child at home, but I don’t know how that would work out and for how long,” she said.


Lydia Nell and Thomas Beckman both have complex and expensive needs. And they’ll need access to care for their entire lives.

“There’s no way that any insurance company could cover all of the needs of these children,” said Julia Adams, a lobbyist who represents Association for Home and Hospice Care of North Carolina.

Adams said the Medicaid waiver programs that provide community-based services for both children and adults with intellectual and developmental disabilities are the safety net for the most vulnerable.

“Our concern right now is looking at the federal government and what they’re proposing do is disable this safety net that has been so successful,” she said.

Adams also expressed frustration that the AHCA would cap federal allocations to states based on spending and enrollment levels in 2016. But that was the very year that, after years of pushing, Adams and other advocates convinced North Carolina lawmakers to add extra slots to Medicaid programs for medically fragile children and adults. And in his first budget, Gov. Roy Cooper proposed adding an additional 1,000 slots for disabled adults.

But all those new slots start in 2017, meaning federal funding for those slots would be lost under the AHCA.

“That snapshot in time probably does not adequately catch how many kids we have who needed that program,” Adams said. “Our concern is that if we freeze it at that amount… when we had kids on a wait list who are now coming off the wait list.”

Martha sitting in the floor, looking at her son Javier, who is looking at the camera.
Martha Chaires plays with her 2-year-old son Javier during their visit to the General Assembly Tuesday. Chaires said, “If you don’t give these kids the support they need – and they’ll need health support and they need education support, but they also need the support of their communities and love and friendship and all those things – they will die.” Photo credit: Rose Hoban

“They’ll end up back on a wait list, and who knows for how long,” she said.

No blame

Martha Chaires took her 2-year-old son, Javier, to see her state representative on Tuesday. While there, she talked about Javi’s many health problems and the thousands of dollars it cost her and her husband after he was born.

“He has a heart condition, breathing and airway problems… and the representative said, ‘Well, you have Medicaid to cover that,’ and I said, ‘Oh, no, we didn’t automatically qualify for that.’”

“So he didn’t realize that you don’t automatically get it right away,” Chaires said, expressing surprise.

Chaires wasn’t surprised when she had Javier, though. She learned he would have Down Syndrome when she was about 14 weeks pregnant.

“I had a lot of people say to me, ‘why didn’t you do something about it.’ Well, it’s not an ’it,’ it’s a ‘him,’ and what would I do?” she asked. “I’m gonna have him and I’m gonna love him.”

Chaires had an advantage. She’d worked extensively with children with disabilities, including children with Down Syndrome.

“I knew what I was up against.”

But Chaires said she couldn’t blame someone in the same position who decided to have an abortion.

“It’s heartbreaking to me to see the people who say they’re pro-life but want to cut funding for Medicaid,” Chaires said. The discussion in Washington has worried her, and she said it’s turned her into an activist for children like her son.

“You can’t make people have children just to watch them die. And if you don’t give these kids the support they need…  they will die.”

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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...

3 replies on “Disabled Kids’ Parents Watch D.C. Warily”

  1. Might it be possible to change the title of this article to “Parents of Children with Disabilities Watch D.C. Warily”? The current title is not very “people friendly”. The “kids” are actually children, and they are children FIRST. The fact that they have a disability, while significant to their lives, is secondary to being a person first. Children with disabilities and their parents have enough battles to fight as it is. They don’t need to also fight to gain respect as a person. Thank you for your consideration of this request.

    1. We do use “people-first” language throughout our publication in stories, a quick read-through will show you that’s the case. However, for the sake of brevity in headlines, we sometimes allow that standard to drop.

      1. I did see the use of “people-first” language in most, but not all, of the story. However, since headlines are what often grabs the reader’s attention, it would seem that to “allow that standard to drop” for the sake of brevity would not be best practice. Sorry, but I don’t “buy” your disappointing

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