Families sue the state and health care companies over lack of care for medically fragile children

Caleb Vaughan is a 3-year-old from Sandia Park, N.M. On paper, he is disabled and medically vulnerable. He has Down Syndrome, a serious seizure disorder, developmental delays and depends on a gastronomy tube to live.

But off his medical diagnosis sheet, Caleb’s parents describe a delightful young man who will suffer seizures for a moment of joy.

“He is the biggest fighter you will ever meet,” his mother Victoria Vaughn said. “Caleb will fight through a seizure just so that he can grab a ball that he likes. As adults, that would knock us over, and we’re not going to fight the same way.”

Caleb is enrolled in the state Medicaid program that provides children like him with in-home nursing care. 

But a new lawsuit filed against the state of New Mexico and the three private companies who actually provide that care alleges that New Mexican children are only getting a fraction of what they need and are promised by law.

The Vaughan family — along with two others and attorneys from Disability Rights New Mexico and the New Mexico Center on Law and Poverty — filed a class action complaint in federal court on April 28 against the New Mexico Human Services Department and three health care companies: Presbyterian Health Plan, Inc.; Blue Cross Blue Shield of New Mexico; and Western Sky Community Care, Inc.

The medically fragile children get care through New Mexico’s Medicaid Managed Care Program called “Centennial Care 2.0.” The state pays the three companies on a monthly basis to oversee the children’s care.

The complaint alleges that the medical companies have an incentive to not provide care because no matter how much nursing care they actually provide, they receive the same monthly payment from the state under the Medicaid program. 

According to the complaint, when there are children enrolled in the program but the nursing services are not provided, the companies hold onto the profits. But when eligible children do receive medically necessary private-duty nursing care, the companies lose profits.

“The managed care organizations are incentivized not to hire more nurses, because whatever money is left over from the chunk of money that they get from the state goes to them — they can just pocket that,” said Holly Mell, a staff attorney with Disability Rights New Mexico. “So they’re incentivized to cut costs as much as they can.”

The plaintiffs are asking the court to force the companies to provide the care to them and “other Medicaid-eligible children like them, as required by law.”

The University of New Mexico Center for Development and Disability Pediatrics found that Caleb needs 173 hours each month of in-home private duty nursing care. The complaint states that he only receives 76 hours per month.

“We’re anticipating that shrinking,” Caleb’s father Jeremy Vaughan said in an interview, because Caleb’s nurse is ready to retire and likely will this summer.

The company cited “nursing shortages” as the reason why Caleb is not getting the nursing care he needs and “deemed the matter resolved,” according to the complaint.

When Caleb doesn’t get the care he needs, his parents must take off from work to care for him, the complaint states. 

It’s gotten to the point where his parents are struggling to balance work and provide for his care.

According to the complaint, Victoria Vaughan, gave up a “high-level position” as a federal police officer to take a lower-paying job to be able to care for him. She has since used up all of her leave.

“Those hours allow us to be parents, not just health care workers,” Jeremy Vaughan said.

Jeremy Vaughan, a New Mexico State Police officer, “may have no option but to accept an early retirement” to care for him, the complaint states.

The Vaughn’s aren’t alone. 

There are at least 53 children in New Mexico who are eligible to receive care through the program but who are unable to actually get that care, according to the complaint.

The complaint alleges that by failing to make sure that these children get the nursing hours they need, the state and the companies “have exposed plaintiffs to the unnecessary isolation and to the risk of institutionalization or hospitalization — in violation of the Americans with Disabilities Act.”

Jeremy Vaughan said his family is just a sample of those that are dealing with these issues every day: single parents, parents with one income, or parents with more limitations than the Vaughans.

“That nurse in the home, that nursing care and those hours are absolutely critical to children who aren’t just disabled but are incredibly medically fragile and of the highest order in need,” he said.

The complaint alleges that the companies “have declined or refused to provide medically necessary nursing services, in the hours allotted, to eligible children.”

“These managed care organizations have therefore reaped profits they have not earned,” the complaint states.

The complaint also accuses the New Mexico Health and Human Services Department and its acting Secretary David Scrase of failing to enforce the contracts with the companies.

A spokesperson for the Human Services Department declined to comment on the lawsuit or whether HSD has made any effort to verify the amount of in-home nursing care is being provided.

As of Sunday, neither the state nor any of the companies had filed any responses to the lawsuit, according to federal court records.

Victoria Vaughan said all medically fragile children are fighters like Caleb.

“These kids fight through huge issues all day long that really put a huge, huge stress on families, and that is something that we are trying to change, because we know that Caleb deserves better,” she said. “These families, we’re all hanging on by a thread, every single day. That’s what these nursing hours that we are promised would give us, is a rope to hold onto, instead of just a thread.”

Mell said families like the Vaughans need extra support to ensure that they can continue to live together.

“We know children do better when they’re able to remain with their families and not be taken into an institution or nursing home,” Mell said.

For years, the companies named in the lawsuit have reported to state officials that they have enough nurses to provide the care these children need, Mell said, and then the state pays them.

“And then that’s been it. The state has washed their hands of it. And no one’s wanted to look any deeper about are the families actually getting the services?” Mell questioned.

Families told the attorneys and UNM researchers that children who are medically fragile weren’t getting the amount of hours that they qualified for and need, “That’s typical of what we hear from families is that the providers don’t exist,” Mell said.

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Jesse Clifton, a staff attorney with Disability Rights New Mexico, said other states have been able to work with the health care companies to ensure that the nursing positions are filled.

“There hasn’t been that same level of effort in making sure that the most vulnerable children in the state of New Mexico have in-home nursing care that they’re entitled to,” Clifton said.

New Mexico has argued that it can adequately run the Medicaid program, Clifton said, it has contracts that assure that, but the examples in the lawsuit show that is simply not true.

Mell said state officials need to be engaged in solving the problem rather than ignoring it or saying they don’t know how to solve it.

It’s every family’s worst nightmare to have a child put into an institution rather than getting the care they need at home, Victoria Vaughan said.

“It would be a death. It would be crushing,” Jeremy Vaughan added. “We would not be able to live with ourselves if Caleb was there.”

Caleb is immune-compromised, and it is a risk just to leave him with a babysitter, he said, who wouldn’t have the training needed to care for him.

“We are honored to take care of Caleb, and he’s not a throwaway child,” Victoria Vaughan said. “This is about making sure that he has the best quality of life that he deserves. Caleb deserves better than what he is getting, and these medically fragile children deserve better than what they are getting from these (companies).”