OLATHE, Kansas — It’s a typical Thursday evening in the Hoffman house.
The family hangs out in the living room for a small dance party. Then one of the kids reads a book to 18-month-old Miles.
Neil and Abby Hoffman make sure Miles, who has chronic lung disease and cerebral palsy, joins in with his three siblings while sitting in his positioning chair.
“He has some vision problems,” Neil Hoffman said. “He eats through a G tube (a gastrostomy tube used to deliver food and medication directly to the stomach), has a tracheostomy tube in his throat. (He’s) ventilator dependent. So he’s basically on life support. But he’s doing really well. He’s fighting through it all.”
The coat closet in the front hallway is filled with Miles’ medical supplies. He sleeps in the dining room.
“It’s just too hard to take him up and down the stairs,” Abby Hoffman said.
What their son really needs now is a standing frame to learn how to stand and build leg muscle. With that, Miles might walk one day.
But insurance won’t pay. Miles is covered by overlapping plans — his parents’ Blue Cross Blue Shield of Kansas City policy and a second one managed by Aetna from the Kansas Medicare program, KanCare.
Blue Cross says it doesn’t cover standing frames. That passes the buck to Aetna.
Aetna might pay the $5-6,000 cost for a standing frame. But only after Blue Cross puts its denial in writing. Blue Cross won’t. And that leaves Miles in limbo.
“It’d be nice if they just talk to each other and say, ‘Hey, we’re not going to cover this, so will you?’”
Families across Kansas find themselves in similar bureaucratic dead zones, unable to get critical medical devices. The denials can spoil chances to develop at home, at school and into productive adults. And in some cases, like Miles, that first step.
Doctors, therapists and advocacy groups say the denials of prescriptions for medical equipment come too often and appear to violate at least the spirit of federal law.
The Kansas Department of Health and Environment did not respond to questions about chronic delays and denials for physician-prescribed devices by KanCare insurance companies.
Instead, in an emailed statement, KDHE said it is working to get lawmakers to address low Medicaid reimbursement rates.
“The Medicaid program needs the Legislature’s approval to increase rates to the levels our providers are asking for,” the agency said.
Carrie Grosdidier, an early childhood intervention occupational therapist who works with the Hoffmans, said the absence of that standing frame could have profound consequences for Miles.
“That’s impacting his ability to move forward with his outcomes, his goals, and his independence,” she said.
Cases like his can prove complicated and mean navigating through red tape. The barriers cost families life-changing equipment. Elizabeth Edwards, an attorney with the health care rights group National Health Law Program, said bureaucracy too often gets in the way of care.
“People should not be waiting … an extremely long time to get these medically necessary devices,” she said.
The federal Early and Periodic Screening, Diagnostic and Treatment law, or EPSDT, mandates children on Medicaid receive access to comprehensive equipment and services they need.
“One of the things that comes up often is whether or not the state sets the definition of medical necessity, or whether or not managed care plans have more wiggle room to define what medical necessity means,” Edwards said. “That can really inhibit whether or not something is covered by a plan.”
Kacy and Dan Seitz have learned to navigate the system over the years while taking care of their 12-year-old daughter, Hudsyn. She suffered a brain injury at birth. The Shawnee, Kansas, family has had to get a wheelchair, a bathing chair and a stairlift.
“We’ve been on this road for about 12 years, that process is more familiar to us,” Kacy Seitz said. “For new families, that’s pretty intimidating.”
Each month, Dan Seitz talks with insurers about what the family needs for Hudson. But insurance does not cover everything each month. Sometimes it depends on how much their claims add up to in a given month and whether KanCare, the state’s Medicaid program, will cover something or the family needs to pay for things on its own.
“These are not devices that are optional for our daughter,” Kacy Seitz said. “We have to have them.”
Knowing the lengthy wait times and potential denials that can routinely come with durable medical equipment means trying to prepare well in advance.
“You almost have to think about it a year ahead of time in order to follow the existing process and get equipment on time,” Kacy Seitz said.
And sometimes they just make something themselves. They’ve placed a La-Z-Boy recliner on a wooden platform with wheels and fashioned a paper towel holder to station one of her pumps by her bed.
“Kacy’s first thought is how do we get something paid for,” Dan Seitz said. “My first thought is, ‘How can I just make it, because I already know it’s probably not gonna get paid for.’”
National Health Law Program senior policy analyst David Machledt said few people appeal their denials. It’s even more difficult for those that do not have extra support systems to help.
“(It) exacerbates some of the health disparities and access that we are seeing for people with disabilities, for people from different cultural backgrounds,” he said.
A Strained System
Federal law promises children on Medicaid the equipment they need to thrive. Critics say routine delays and denials of medical equipment suggest KanCare does not live up to the law’s intent.
Disability Rights Center of Kansas executive director Rocky Nichols said the issue got worse when Kansas privatized Medicaid 10 years ago and handed over management to insurance companies.
“There’s been a lot more problems,” he said. “It’s a lot more difficult for people with disabilities or parents of kids with disabilities, to frankly get what they need under Medicaid.”
Kansas has three managed care organizations, known as MCOs, that operate KanCare.
Aetna, UnitedHealth and the Centene subsidiary Sunflower all received contracts with the state starting in 2019. Those contracts were automatically renewed last year for two years and won’t expire until the end of 2024.
“The managed care company gets paid upfront,” Nichols said. “So it creates a real problem.”
He said that cuts into incentives to insurers to cover more expenses.
Sheila Simmons operates a sort of stop-gap library of medical equipment in Parsons, Kansas. It checks out items including wheelchairs, crutches and beds.
“The process is almost designed to be disheartening in some ways, if you ask a parent,” she said.
Advocates for those families want to make Medicaid work with fewer delays and denials.
Simmons, for instance, said more training for insurance companies on federal rules like EPSDT could help children access care they need.
“Kansas Medicaid needs to reassert that EPSDT is how they’re supposed to be operating,” she said. “And reminding (insurers) that if you’re able to document the child’s need — medically, physically — that equipment should be purchased.”
Alliance Rehab owner Scott Lopez finds himself regularly lobbying to get KanCare payments for equipment that doctors have prescribed.
“I’ve been trying to get a kid a bath chair since July,” Lopez said. “And we still don’t have that with them.”
That bath chair was finally delivered six months later. He said he has seen some progress.
“We’ve had some wins, we’ve had some kids get equipment that I didn’t think they’d get, it took a long time, we’re getting better at it, the state’s getting better at it,” he said. “But we just got to keep working to make it better.”
But the reimbursement through KanCare is still too little. If that doesn’t change, Lopez said, he is going to have to stop accepting Medicaid patients from Kansas.
With the current contracts to run KanCare ending next year, Nichols with the Disability Rights Center of Kansas, said the state can force insurance companies to deny less and pay for medical equipment more quickly.
“We don’t have the right incentives in the contract that the state controls to ensure that things are provided promptly,” said Nichols. “And the state needs to fix that.”
Other states, including Iowa, publish quarterly performance reports showing the rate of denials for each of the MCOs and what is being appealed the most by each insurer.
Dana Peterson is mom to a 20-year-old son, Charlie, with a chromosome abnormality. A few years back, she had to work to get a toilet adapter and wheelchair for him. They were custom-made, but the wrong sizes. So the family faces another long wait for the custom-made gear to be manufactured.
“It’s like starting all over again,” Peterson said. “If I have to pay out of pocket, I’m going to, because he needs something that works for him and that fits him.”
A temporary standing frame sits in the corner of Miles Hoffman’s room. His therapist, Grosdidier, has been able to loan it to the family until Miles gets his own personalized one. Neil Hoffman is grateful to have one, but he fears there will come a day when they lose it.
“I’m already pretty frustrated about it,” he said. “But I’d be pretty furious if we didn’t have one already.”
Samantha Horton reports on health for the Kansas News Service. You can follow her on Twitter @SamHorton5.
The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW, and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy.
Kansas News Service stories and photos may be republished by news media at no cost with proper attribution and a link to ksnewsservice.org.
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