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Parents of children with medical needs so severe they need round-the-clock nursing care at home are in “sheer panic” as the state Medicaid program notified them this fall that their services have been denied or reduced. 

At least 20 families have hired legal counsel to fight the denials and about 150 people attended a Medicaid children with disabilities meeting to discuss the denial letters, which were received during the past few weeks. 

Two days before a planned family news conference at the state Capitol, officials from the state Medicaid division Wednesday offered a temporary fix. The Colorado Department of Health Care Policy and Financing — which includes the Medicaid program for people with low incomes or disabilities — announced a 60-day reprieve on pending denials. 

But for families, it’s not enough. They want a permanent solution to an injustice they say the state should have fixed months ago. 

Family has 7 medically fragile children

Several parents gave emotional testimony this month during a medical services board meeting, a governor-appointed, rule-making group for the state department. Board members, after hearing parents speak, strongly urged the department to remedy the issue immediately. 

Katerina and Brad Evers, both nurses, have seven adopted children, all with severe medical needs — feeding tubes, oxygen machines, wheelchairs and 150 prescription medicines among them. The kids, ages 2-16, were all living at Children’s Hospital Colorado with no family capable of taking care of them. 

All have had 24/7 nursing services approved by Medicaid, a requirement of the hospital when each was discharged. But in the past few weeks, the Everses were notified that three of the children’s Medicaid services were cut in half, to 10 or 12 hours per day. They are expecting a similar reduction in services for two other kids with similar medical issues. 

“We are scared to death No. 1 because we don’t know what is going to happen to these children,” Brad Evers told the medical services board. “This is barbaric. This can’t happen this way. They were in the hospital and they didn’t have a mom or a dad.

“They were born broken, and now you are going to break them more because you want to stop some services? They get to call somebody a mom and a dad, and you want to cut hours?”

The family is able to function because the kids’ Medicaid services have paid four daytime nurses and Katerina and Brad to care for them at night, Katerina told The Colorado Sun. The children go to various schools, and some need a nurse with them at school all day. Katerina and Brad try to sleep some during the day, but also take children to doctor’s appointments. 

Families will have services through Dec. 31

Denver attorney Jack Robinson is representing about 20 children who used to have 24-hour services but were partially or fully denied. “This has been catastrophic for these vulnerable children and their families,” said Robinson, who represented a Douglas County family in a 2017 landmark U.S. Supreme Court decision that required school districts to provide a higher standard of special education.

The denials, which are sent to families by a state contractor called Kepro, are filled with “glaring errors,” including no notice that state regulation requires that services must stay in place for 60 days after a denial, he said. The letters do not even include a date when services will end, Robinson said. 

This month’s turmoil is the latest point of frustration for Medicaid recipients after the department’s switch to the new contractor last year. Kepro, a national company, handles prior-authorization requests submitted by home health providers and agencies that supply private-duty nurses. Earlier this year, after a high number of denials for home-health services, Medicaid officials put the requirement for prior authorization on hold for those services. But prior authorization has been required for private-duty nursing since November.

Families say the vagueness of the denial letters has contributed to their panic, with many worried that their in-home nurses will quit for fear they won’t get paid or that families might end up owing the state Medicaid division money. 

In an emailed announcement Wednesday, the state Medicaid department said it was initiating a “temporary administrative approval process” through Dec. 31 for children who receive private-duty nursing benefits. The action means that families that received denial notices will still have services until Dec. 31.

In the meantime, the department will collect any required documentation from physicians and other caregivers to “ensure the right level of care is approved in a timely manner,” the announcement said. 

State officials also said they “heard feedback that our notices can be confusing” and that they “will be working to improve those notices over the coming months.” 

Stopping services would violate federal law, attorney says

Exactly how many families have received denials or reduced services is unclear. In a meeting two weeks ago, department officials said that 88% of private-duty nursing services for children were fully approved. Yet the data was from November through mid-August. Many families said they received denial notices after Aug. 15. 

In an interview Thursday, Bonnie Silva, the director of the Office of Community Living at the state department, said she did not yet have updated numbers. But she said the Department of Health Care Policy and Financing is committed to implementing new practices — including training for health agencies about the prior-authorization process and new denial letters that would clearly explain patients’ rights to appeal and keep services until an appeal is settled. 

“As department-level leadership, we were deeply concerned,” Silva said. “It is a core priority for us here at HCPF to make sure we have not just the services but also have policies in place that support people with really complex needs.

“We’ve heard that there are enough concerns and what we want to do is to take the time to really thoroughly evaluate those concerns. We try really hard to thread the needle between the right service package and also make sure that we have the right oversight of that. We certainly heard feedback that there was tension between the two.” 

Advocates for the families said the department’s numbers were incorrect and that more than half of families with that Medicaid benefit have been notified of a reduction in services. 

Katherine Wallat, a senior attorney at the Colorado Center on Law and Policy, warned that the state is not meeting its obligation under a federal law that gives people with disabilities the right to receive services at home instead of institutions. The 1999 U.S. Supreme Court ruling, called Olmstead, says the government must provide community-based services. 

“This current process is not only confusing but it’s unlawful,” Wallat said, adding that the denials have caused “sheer panic.” 

One mother, whose daughter choked and suffered a brain injury at age 2, and who has since adopted five medically fragile children, said she received notice that some of their services will be cut in half. “I am angry, sad and terrified,” Pam Rogers said. 

“What is going to happen to them?”

The department’s announcement of a 60-day pause comes about two weeks after members of the agency’s medical services board asked for an immediate response. 

“It’s urgent that this happen,” said board member Dr. Barry Martin, a physician at University of Colorado Hospital. “For these families, it sounds like it really needs to happen immediately.” 

For the Evers family, the two-month pause is welcome but does not relieve their stress. “I don’t know if it makes me feel better because I don’t know what is going to happen after the 60 days,” Katerina Evers said. 

With the help of two nurses, Katerina planned to bring three children to the Capitol on Friday for the news conference. Brad is taking two others to doctor’s appointments at the hospital.

The Everses feel abandoned by the system after believing their adopted children would always qualify for round-the-clock services at home. They modified their Conifer home to accommodate the children’s equipment, have a landline and generator in case of a power outage, and were inspected by a Medicaid compliance officer. Now, they fear they couldn’t get the kids to school or even leave the house or sleep if their services are reduced.

“So you tell me, please,” she asked, “what is going to happen to them?” 

Jennifer Brown

Jen is a co-founder and reporter at The Sun, where she writes about mental health, child welfare and social justice issues. Her...