Katrina Otten was almost seven months pregnant with twins when she began having difficulty breathing. It was March 2020. Fearing he might have COVID-19, he went to the hospital near his home in Bishop, California. There they found something worse: he was bleeding internally and doctors told him he needed emergency care. -section. Soon, Otten was loaded onto a fixed-wing plane and airlifted to a larger hospital in Loma Linda, California, more than 250 miles to the south. It took her 10 days to recover, but it took her twins even longer.
It was two months before her newborns were strong enough to return home and join Otten, her husband, and their three oldest children in Bishop. Otten and his family were ready to put that terrifying episode behind them, but in September 2020, he began to suspect that something was not quite right with Hudson, one of the twins. He didn’t respond as quickly and compared to his brother Grayson, he seemed different.
The Ottens had already traveled to Loma Linda three times that summer so their specialists could monitor the twins’ development, and at their September appointment, they learned that Hudson had cerebral palsy. By then, Otten had realized there was a price to pay for living in such a rural area: limited access to specialized care. Knowing that Hudson would continue to need specialized medical care as she grew older, she and her husband, Adam, felt they only had one option. “We started putting boxes together,” Otten said.
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in the middle of a nationwide shortage of pediatric subspecialty physiciansFamilies caring for children with special health care needs in rural areas are often forced to travel long distances to receive care. For those who live in California’s remote Eastern Sierra, including the Otten family, that means hundreds of miles of driving, often at their own expense. Navigating the complicated web of specialists, insurance companies, and state and county agencies can take a toll on families.
For some families, the burden is too great to bear and reaching out to be closer to care seems to be the only option. For others, the burden is borne by parents for whom managing bureaucracy while advocating for their families feels like a full-time job. Doctors and parents agree that, in addition to bringing more specialists to rural areas, increasing the flow of information between agencies and making it easier to obtain travel reimbursements would alleviate some of this burden for families.
Pediatric specialists often earn less than general pediatricians, even though they have received three years of additional training, which took them fewer future doctors to pursue this line of work. General pediatricians are among the lowest paid doctors in the country, largely due to low federal reimbursements for care. The result is a shortage of doctors, with Children in rural areas suffer disproportionately.
Children with special health care needs, according to the Centers for Disease Control and PreventionThey include those with physical, intellectual and developmental disabilities, as well as those with medical conditions such as asthma, diabetes and blood disorders. Nearly 1 in 5 American children has a special health care needand while they are equally distributed in urban and rural areas, children in rural areas face greater barriers to receiving care.
Dr. Lindsey Ricci is currently the only full-time pediatrician at Northern Inyo Hospital in Bishop. Northern Inyo’s other full-time pediatrician is currently on maternity leave and another pediatrician travels to the area from time to time. He said that while this small team, plus family medicine providers from the nearby rural health clinic, have typically been able to care for the community’s routine pediatric needs, they do not have the resources to manage the complex requirements of treating children with care. special medical needs. But, “because we are the only pediatric clinic in the city, we see a lot of children with medical problems,” Ricci said.
Mammoth Hospital, 45 miles north of where Ricci works, employs three full-time pediatricians, but they, too, have a shortage of specialists. Ricci believes the reason for this is mainly due to numbers. Inyo and Mono are two of the least densely populated counties in the state, and compounding factors like a lack of reliable public transportation make the distance even more difficult to manage. Northern Inyo occasionally receives visits from out-of-town specialists who can see patients, and she believes making these visits more frequent and reliable would help ease the burden of travel for families. Telehealth appointments with specialists can also help reduce families’ need to travel, she said.
A change of plans
After Hudson’s cerebral palsy diagnosis, the Ottens assumed they would need to move to a more urban area. But as they considered where to relocate, they also began to discover travel reimbursement options that made it more viable to stay put. Four years after the birth of their twins, the Otten family still travels regularly to Loma Linda for care, but they have decided to put away the moving boxes, for now.
Otten believes that travel reimbursement, whether through a local transportation agency, insurance companies or private financing, should be easier to obtain for families like hers. For two years, his family was able to get reimbursed for some travel expenses through the Eastern Sierra Transit Authority, but now the agency’s website says “funding for this program has been exhausted.” Otten hopes the program will resume, but the agency has not been able to give him any estimate of when that might be.
The Ottens also got some travel reimbursement through California Children Services (CCS). CCS is a state program that helps arrange and pay for medical care, equipment, and rehabilitation for children with certain conditions. The Ottens have insurance through their employers and it didn’t originally occur to them that their son might have more resources as a Medi-Cal patient than he would have in their Anthem Blue Cross plan. But Otten said enrolling Hudson in Medi-Cal made navigating CCS reimbursements much easier, even though she also received a high number of claim denials.
A 2017 California law requires Medi-Cal managed care health plans to include reimbursements for travel arrangementsbut data on how many patients have taken advantage of this benefit is scarce. Medi-Cal generally requires patients to use public transportation or ride-sharing services before receiving reimbursement for their private vehicles, placing the burden of proving that a private vehicle is their only option on rural families who often live in areas without public transportation.
In addition to connecting its patients with CCS, Northern Inyo Hospital does not have any reimbursement programs of its own, but Mammoth Hospital does. Rhiannon’s Kids is a program administered by Mammoth Hospital Foundation that helps its patients obtain reimbursement for travel funds. The foundation said they helped 18 families last year; the previous year, 23. However, their funding is only available to Mammoth Hospital patients, making the Ottens ineligible.
Navigating all this bureaucracy, from private insurance companies to Medi-Cal, from CCS to Kern Regional Center, from Northern Inyo Hospital to Inyo County Health and Human Services, has forced Otten to become a expert defender. She says the many offices that help her family often don’t communicate well with each other, and it’s up to her to file a constant stream of paperwork. “It was like another job,” Otten said. She now helps other families in her community navigate these agencies, but she wishes there was a professional to do it.
And, Otten said, it’s not just the financial cost of routine travel that adds up for families: It’s also the time. Otten has spent countless hours traveling back and forth to Los Angeles, and she’s not the only one. For V. and his family, the frequency of their trips to Children’s Hospital Los Angeles made their stay in the Eastern Sierra even more complicated. V., whose full name is being withheld at his request to protect his family’s privacy, has two children with special health care needs. Her son, born in 2009, has a heart condition and her daughter, born in 2015, has a seizure disorder. They both spent a lot of time in the hospital, and in 2017, V. and her husband contemplated the same big decision the Ottens once made. The 250 miles separating them from their children’s specialists became unbearable and they moved to Los Angeles.
A few years later, V’s children’s health conditions had stabilized and they did not require as much medical help. So in 2020, when his job offered him the opportunity to return to the Eastern Sierra, the family decided it was time to return home. They missed the quiet, calm atmosphere of Bishop and thought getting away from the hustle and bustle of the city would be good for everyone. They packed their bags again and headed back to Bishop.
And yet, medical obstacles continued to appear. In the summer of 2022, two years after returning to Bishop, V.’s daughter required two surgeries that resulted in her being flown to Los Angeles. And although he has since stabilized, next year V.’s son will face difficult heart surgery, one that was too complicated for his doctors in Los Angeles to perform. Instead, the family will use their summer vacation to temporarily stay in Palo Alto, California, while their son receives care at Stanford Medical Center.
Meanwhile, many other families of children with special health care needs choose to leave the area permanently once they realize the enormity of the struggle ahead, said Ricci, the Northern Inyo pediatrician. That makes the number of these children in the Eastern Sierra seem disproportionately low compared to more urban places, he said.
For the Vs and the Ottens, the decision to stay in Bishop is a decision they make every day. They love the community and want to stay as long as possible. Their hope is that state and local agencies will take steps to increase access to doctors in rural areas, including Bishop, and increase reimbursements for travel expenses. That would make it easier for them to stay.
“This is where we want to be,” Otten said.
This story was originally published by California Health Reportand is reprinted here with permission.
