Parents of children with disabilities so severe they say they need round-the-clock care to live at home are growing increasingly frustrated with the state Medicaid division as confusion over policy changes has dragged on for months.
Families of children who need breathing and feeding tubes to survive say they’re again receiving denials for in-home nursing services after the latest freeze on the prior-authorization process was lifted.
“The law hasn’t changed. The criteria hasn’t changed,” said Jack Robinson, an attorney representing 20-25 families who have appealed the denials they received from the Medicaid division. “The only basis to reduce a child’s hours is if they got better. In none of the situations that I’m dealing with have they gotten better.”
Department officials say only a fraction of the 948 people who’ve asked for private-duty nursing services have been denied the benefit or had their hours cut. And families are still receiving services while they appeal.
The confusion goes back to three years ago, when the Colorado Department of Health Care Policy and Financing — which includes Medicaid — put a freeze on the prior-authorization process for in-home nursing care for children and kept the freeze throughout the coronavirus pandemic. That meant families were receiving services based on physicians’ orders but without having the state contractor that processes claims making a determination about whether they were medically necessary.
In the meantime, Colorado switched to a new contractor. Kepro, a national company, handles prior-authorization requests submitted by agencies that supply private-duty nurses.
After the pandemic shutdown ended and the prior-authorization process resumed in November 2021, so many families were denied services or had their children’s hours reduced that the state department again put the prior authorization process on a freeze. Some families told The Colorado Sun they were in panic mode for months until the department initiated the emergency freeze last October.
But the prior-authorization process is back on again, and denial and reduction letters began hitting mailboxes in March and April, setting off a new wave of frustration.
Families upset over recent denials
Pam Rogers said services were cut by 14 hours per week for her 9-year-old daughter who uses a wheelchair, cannot communicate and survives with a gastronomy tube for nutrition. Rogers adopted the girl so she didn’t have to spend her life in a hospital.
“She has comorbidities in literally every system of her body,” Rogers said. “If someone is not assessing her comfort, pain, red marks on her side. … all of these little things can turn into very big expensive things and potentially fatal things.”
In addition to the girl, Rogers has a biological daughter who choked and suffered a brain injury at age 2. She also adopted four other medically fragile children from foster care, including a baby who was living in a hospital.
The Aurora mom fears the ongoing denials for families like hers will lead to fewer options for medically fragile children.
“They are making it incredibly hard on a daily basis to care for them,” Rogers said. “They are adding 100% more stress than is ever needed. Every single time we feel like we resolve one thing, they try to break another thing. They just keep placing more barriers and more barriers to the point I don’t know what the future holds.”
Robinson said he is representing several families who have been denied or partially denied nursing services and are appealing to an administrative law judge. “Medicaid benefit is a property right,” the attorney said. “They are in essence taking away that property right without a change in circumstances.”
Robinson said a few of the children, who are only 2 or 3 years old, did not previously have to go through a prior authorization because of the freeze on that process. But several of his clients were approved in the past and have now been denied the same level of in-home services.
The parents, some of whom have set up licensed medical foster homes and adopted children from the foster care system who were abandoned in hospitals, believed they would receive services for the rest of their lives, Robinson said.
“The whole idea is that we are trying to set up a home setting that would provide these incredibly medically fragile, complicated kids with nursing services,” he said. “Now all of a sudden the whole landscape changes. We can’t send the child back to the hospital.”
Katerina Evers and her husband, both nurses, have adopted eight medically fragile children. Two were dropped from 24-hour nursing services to zero hours, the couple learned at the end of April.
“It’s like they are playing with people’s lives.”
— Katerina Evers, mother of eight medically fragile children
One of those is a 16-year-old girl who has a g-tube, oxygen, a wheelchair and behavioral issues because of previous abuse. She had been approved for round-the-clock services for the past 11 years, since she was adopted by the Evers from an abusive home, Evers said.
The other is a 9-year-old girl whom the Evers adopted as an infant. The child’s face and neck were not formed correctly and she needs an artificial airway to breath and a tube to eat because of a cleft palate. Evers said she received a letter from the state contractor saying the girl’s services were not medically necessary because she is “in a state of transition.”
“What transition would that be?” Evers asked. “She has been like this since infancy. The letters make no sense.”
She wonders why the Medicaid division can’t grandfather in the families who already had 24-hour services and enact its policy changes in the future.
“It’s like they are playing with people’s lives,” she said.
About 200 denials issued since November 2021
From November 2021 to last month, 948 people applied for private-duty nursing services. In 86.5% of cases, families were fully approved for services, according to Medicaid officials.
But there were 71 full denials and 134 partial denials issued during that time.
Denials happen because the services aren’t deemed medically necessary or for technical reasons, meaning that more information about their needs is required.
Since last fall, Medicaid officials have provided additional training about the prior-authorization process to the 30 or so agencies in Colorado that place private-duty nurses in homes. The state also worked with its contractor to write clearer denial letters that provide an explanation and describe a family’s right to appeal.
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In addition, the Medicaid division met with disability advocacy groups to hear their concerns, and reached out individually to families who had complained publicly about denials.
“While you may have a few voices that are really loud, we really wanted to understand the scope of the over 900 people that receive this benefit,” said Bonnie Silva, the director of the Office of Community Living at the state health care department. “Let’s make sure we understand all of the problems.”
At the same time, the Department of Health Care Policy and Financing is reviewing the rules around private-duty nursing, which have not been updated for several years. There is no rule, for example, dictating how many medically fragile children one nurse can care for at a time. The department is holding a series of public meetings and plans to present proposed rules to its rule-making medical services board in early 2024.
We’ve worked hard to err on the side of the member, err on the side of how do we be really cautious and make sure that our policies don’t result in harm.
— Bonnie Silva, Office of Community Living
The private-duty nursing program cost $113 million in 2022.
Silva said that any child who in previous years had been approved for services through the prior-authorization process but had their services deemed “not medically necessary” in the latest process was automatically approved by the department “while we take more time to look at those.”
Some families, however, told The Sun that they are panicked because they believe they have been denied or might be denied after such a review.
It’s not the goal of Medicaid for anyone to lose services, Silva said.
“We’ve worked hard to err on the side of the member, err on the side of how do we be really cautious and make sure that our policies don’t result in harm, while also having some fidelity to the responsibility that we have that is extraordinary around the funding that we receive,” she said.