Lydia's body has problems regulating temperature. Since she only has 20 percent of her intestines left, she tends to dehydrate very quickly, according to her mother. Here, she wears a cooling vest when playing outside in especially hot weather to make her more comfortable and to extend her tolerance for being outside a little longer.
Lydia's body has problems regulating temperature. Since she only has 20 percent of her intestines left, she tends to dehydrate very quickly, according to her mother. Here, she wears a cooling vest when playing outside in especially hot weather to make her more comfortable and to extend her tolerance for being outside a little longer. Photo credit: Nell family

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By Rose Hoban

A few months before Elaine Nell went into premature labor with her twin daughters, her husband had lost his job. But that wasn’t the biggest blow the family endured around the time of the births.

Like many premature babies, twins Lydia and Carol ended up in the neonatal ICU. A few weeks into their hospitalization tiny Lydia developed a dreaded complication, necrotizing enterocolitis, that required the removal of about 80 percent of her intestines.

That’s left Lydia, who at 4 years old looks like a regular little girl, extremely fragile medically. She can’t absorb enough nutrition from her food, has difficulty gaining weight and managing her bowels, and her intestinal problems frequently leave her in intense pain. Elaine worries about hot days; if Lydia gets too warm, she can quickly become dehydrated and develop problems with the electrolyte balance in her body, sending her to the hospital.

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

“She’s really complicated, a lot more than I ever bargained on,” Elaine said recently. “She just recently started having seizure type things. It seems like there’s always some new diagnosis that hits you and makes you feel like you’re socked in the stomach.”

For Lydia’s care, the Nells rely on a North Carolina Medicaid program called the Community Alternatives Program for Children (CAP/C), which allows families with medically fragile children to qualify for Medicaid and receive services from nurses and therapists at home.

“We need to stay in close contact with her doctors,” Elaine said.”To try to keep her out of the hospital, that takes a lot of work on their and our part to make that happen.”

But it’s a lot cheaper than institutionalization, or near continuous hospitalization.

“[CAP/C] makes us able to survive,” Elaine said. “It allows someone to take care of her because we can’t physically do it 24/7. It’s just not possible.”

So when the Department of Health and Human Services proposed sweeping changes to the CAP/C program this spring, Nell and other moms swung into action and got the changes delayed.

This week, they met with state Medicaid officials, for the first of a series of stakeholder meetings to iron out the kinks in the program.

Waiver woes

About 2,200 to 2,300 kids in North Carolina are medically fragile, like Lydia Nell, and qualify for CAP/C.

Usually, Medicaid caps the amount of money a family can make to qualify for the program. But for families like the Nells, the federal government allows a waiver to the usual Medicaid rules.

Last year, North Carolina’s federal waiver needed to be renewed. But the plan DHHS unveiled in April set off alarm bells: Service hours for families were slashed, among other changes.

The Nells, parents Bill holding Lydia (who is wearing a backpack) and Elaine, holding Carol. Photo courtesy: Nell family

“My daughter’s hours would have been reduced more than half and her life depends on having people in the home, watching her,” said Natalie Weaver, who lives just outside Charlotte. “What about single parents who are working two jobs, and you’re gonna change things, take their hours away.”

“Our lives are built around those hours, and to take those away, it’s extremely harmful and it could put my child’s life at risk, and others.”

The outcry forced DHHS to announce in May that they would rework the waiver application.

“We just didn’t check in as much as we needed to with the folks who were most affected by this,” admitted Medicaid head Dave Richard. “I’d say it was part of what happens in government sometimes is that we just begin to go down a path that we think is the right one and we didn’t do as well as we should have to listen to people.”

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

In the hole

During the first roundtable meeting on Wednesday, family advocates and service providers presented a litany of issues: Slow or no payment to case management contractors, waiting lists for services in small counties with few providers, changes made to the program without notice and overall poor communication.

James Cuellar runs a small firm in the western part of the state, C&B Support Services, that provides case management for medically fragile children, nursing care, and arranges constuction for things such as wheelchair ramps and renovations to bathrooms.

But his company is in the hole by more than five figures, because the state Medicaid program hasn’t paid.

“I would sure like to know how I’m gonna get reimbursed,” he said. Cuellar talked about one family’s $10,000 spending plan. “They got approved, they told me they’d get paid, I said I’d go forward and do the work, built it… I got denied.”

“It’s an expensive cost for a small business.”

Cuellar echoed the families’ complaints that Medicaid staff have given him and families mixed messages. Staff told them of changes, then reversed themselves; none of the changes were ever in writing.

“It’s been costly for us, and our relationships,” he said.

And in some small counties, families ended up on waiting lists for services. The wait does not stem from the state being unwilling to pay, but rather from a lack of workers in case management agencies to meet the needs.

The moms said those families waited needlessly for help simply because they didn’t know there wasn’t supposed to be a waiting list. They could have contacted DHHS, but didn’t know, yet another result of bad communication from the agency.

Dave Richard heads North Carolina’s Medicaid program.

Loud and clear

Medicaid head Dave Richard, who spent decades as an advocate for children with developmental disabilities before going into state government, said he understood people’s mistrust and frustration. Throughout Tuesday’s meeting, he told families that he wanted Medicaid to do better and worked with them to create a list of problem areas to work through in coming weeks.

“We have a lot of work to do around education, training and communications,” he told the group. “In state government sometimes those are the most difficult things to change, it’s how you create a communication strategy that is effective to meet everybody’s needs.”

Richard said he heard the families loud and clear.

“Our job is to continually try to improve what we say to people,” he said after the meeting. “What we heard today is that people are getting mixed messages. Well, we can correct that.”

He also said Medicaid is so large, part of the problem is simply not having enough bandwidth to focus.

“Every day you’re moving from one thing to the next and to be able to keep the staff and the systems targeted on specific issues becomes more difficult,” he said.

Richard noted the plan delivered earlier in the year had been created largely because staff had not solicited feedback from families, and in the absence of input, they just kept going down the wrong road.

“The lesson learned is that we’ve got to be better and more intentional about execution and how we focus on an issue,” he said. “These families that are raising those points are the reason we have the program.”

For her part, Nell said she and the other moms were “almost cautiously optimistic” after several hours around the table with Richard at the head.

“I’m hopeful. We definitely finally have somewhat of a voice where CAP/C families have had no voice and we did not realize how bad we had no voice,” she said. “I think that’s a big starting point.”

The stakeholder group will meet weekly through August and into September.

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Rose Hoban

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...

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