Proponents of revamping NEMT note that disabled children like Maddie and other people with serious disabilities are in little danger of losing services. In Iowa and Indiana, Medicaid transportation remains available to several groups of patients, including those classified as "medically frail," though the definition of who qualifies can vary widely.
In addition, one managed-care provider, Anthem, continues to transport Indiana Medicaid patients, despite the waiver that was first enacted in 2007.
Still, Medicaid clients like Fallon Kunz, 29, of Mishawaka, Ind., are often stuck. Kunz, who has cerebral palsy, migraine headaches and chronic pain, uses a power wheelchair. When she was a child, she qualified for door-to-door service to medical appointments, she said.
Today, she lives with her father, whose home is outside the route of a Medicaid transit van. Getting to and from medical appointments for her chronic condition is a constant struggle, she said. Taxis are too expensive: $35 each way for a wheelchair-enabled cab.
"The only way I can get rides to and from my doctor's appointment is to ride the 2 miles in my wheelchair, despite all kinds of weather, from my home, across the bridge, to the grocery store," she said. "Right outside the grocery store is the bus stop. I can catch the regular bus there."
Sometimes, she's in too much pain or the Indiana weather -- warm and humid in the summer, frigid and windy in the winter -- is too much to battle and she skips the appointment.
"Today I didn't go because it was too cold and my legs hurt too much," she said one Tuesday in December. "I didn't feel like getting blown off the sidewalk."
In Maddie Holt's case, she was shuttled to Seattle Children's on a rainy Tuesday morning in a medical van driven by Donavan Dunn, a 47-year-old former big-rig trucker. He works for Northwest Transport, one of several regional brokers that manage NEMT services for Washington state.
Dunn said he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in.
"I have to drive different," said Dunn. "I have to watch my corners, watch my starts, watch my stops. It's always in the back of my mind that I have somebody on board that's fragile."
The transportation service can be used only for medical visits to the specialists who treat Maddie's condition, which is caused by mutations in any one of at least 12 genes. If Meagan Holt needs to pick up prescriptions or get groceries, she leaves Maddie and a second daughter, Olivia, 3, at home with their dad and takes the bus or walks to her destinations.
Caring for a severely disabled child is not the life she expected, Meagan Holt said, but she cherishes time with Maddie, who has learned to communicate through tactile sign language spelled into her hand.
"She knows about 100 words. She knows the alphabet," Meagan said. "She likes Disney princesses. She loves 'Frozen.'"
Maddie is one of hundreds of NEMT-eligible children transported to Seattle Children's each month. Last September, for instance, more than 1,300 clients made more than 3,600 trips at a cost of more than $203,000, according to the Washington Health Care Authority, which oversees the state's Medicaid program called Apple Health.
The need is so great, in fact, that the hospital created a transportation will-call desk to help organize the comings and goings.
"When we realized how much transportation is a barrier to getting to your appointment, we decided to do something about it," said Julie Povick, manager of international exchanges and guest services at Seattle Children's.
"The majority of our patients are in survival mode," Povick added. "You need a lot of handholding."
But Verma, the architect of Indiana's Medicaid overhaul plan, has suggested that too much handholding might be "counterproductive" for patients -- and bad for the country.
In a 2016 Health Affairs essay, Verma noted that early analysis of the effects of curtailing NEMT in Indiana showed that more Medicaid patients with access to the program said transportation was a primary reason for missed appointments than did members without access.
"Moreover, 90 percent of (Healthy Indiana Plan) members report having their own transportation or the ability to rely on family and friends for transportation to health care appointments," she wrote.
But Marsha Simon, a Washington, D.C., health policy consultant who has tracked NEMT for years, said Medicaid is the option of last resort. People who are able to get rides on their own already do.
"If 90 percent can and 10 percent can't, what about the 10 percent?" Simon said.
It's a question that haunts Kunz every day.
"I'm a college student, I have a cat," said Kunz, who is studying psychology online at Southern New Hampshire University. "I'm just a regular human trying to do things, and the inaccessibility in this area is ridiculous."
(Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.)
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