By Callie Shanafelt and Heather Gilligan
This is the first installment of two-part story on special needs children in rural California. For the second part of the story, an in-depth look at the lives of rural families with special needs children, click here.
Local health care is virtually non-existent for children with special needs living in rural California.
Few doctors who are trained to treat the complex conditions that afflict these children practice in remote parts of the state. Traveling to major cities where physicians are more plentiful is often a day-long journey. Families often find that the multiple doctors their children see don’t have a system for communicating with each other, and parents must coordinate their child’s care themselves.
But for many of these families, there is no alternative. Jobs, housing costs or indispensable connections to close relatives keep them from moving. And so they learn to cope with challenges that come with caring for a disabled child.
Roughly 80,000 children with special health care needs live in rural California, according to Dr. Ed Schor, pediatrician and Senior Vice President of Programs and Partnerships at the Lucile Packard Foundation for Children’s Health, which seeks to increase the quality and accessibility of health care for children.
Children with a range of health problems, from hearing impairments to autism to cancer, are classified as having special needs. They require care from sub-specialists, doctors who are trained in fields like pediatric gastroenterology and pediatric neurology, and are few and far between outside of cities.
Still, Crystal De Witt said, rural life gives her family the comfort of a familiar community. Her son Jace, age 3, has lots of grandmas and grandpas on his quiet block in a town outside of Marysville, and she prizes that kind of neighborliness. “I’m a small town girl,” De Witt said, smiling.
De Witt and her husband, a paramedic who works in Sacramento, own their home, and De Witt runs an in-home daycare. Moving to the city isn’t feasible for the family, despite the frequent trips to Sacramento that Jace needs, which take easily more than an hour each way. He was born with a long list of ongoing health needs including a hearing impairment, a too-short esophagus and a cleft palate.
Health care challenges are steep for children like Jace. Pediatric specialists usually practice in urban areas where more people live. The need for sub-specialists, who serve a relatively small population to begin with, may not be sufficient to support a practice in a rural area.
Such realities are combined with a national shortage in pediatric subspecialists, which is driven in part by reimbursement rates for Medicaid that are significantly lower than comparable services provided under Medicare, the federal insurance plan for the elderly, according to a 2010 report from the National Association of Children’s Hospitals. That gap discourages doctors from training for pediatric specialties, particularly as many of these patients rely on Medicaid, the NACH report said.
These factors add up to a long trek for children living far from major cities who need specialized care. Jace, for instance, takes at least weekly trips to Sacramento. To get a second opinion may require an even longer trip, as there are only so many pediatric specialists, even in a city that’s home to a major medical center like UC Davis.
Transportation is one of the biggest problems for families with special needs children anywhere, urban or rural, said the Lucile Packard Foundation’s Schor.
But transportation difficulties and other problems are amplified for families with special needs children who live in rural areas.
Alicia Hrico notes that the travel has an economic impact on families already stressed by medical expenses. Hrico is the Yuba County Office of Education’s Family Resource Center program facilitator, and works closely with the families of special needs children. Their most popular program, she said, is the one that offers $25 gas cards to help defray the costs of trips to see doctors. The costs of having a special needs child are typically so high that the program isn’t income-based, Hrico said.
Some families, she added, must routinely drive to Palo Alto, six-hours round trip, to get the specialized care that their children need. Overall, ninety-five percent of children they serve must travel out of town to get medical care.
Besides the travel, coordination of care — the management of multiple doctors, occupational therapists, medical appointments and medical records — is often the biggest problem for families with special needs kids.
Cynthia Winward’s 18-month-old son has 10 pediatric specialists. James was born with an extremely rare form of hemophilia and quickly developed other ailments that include cerebral palsy and partial blindness. Winward felt like she was “living in hell” when she was adapting to life in Olivehurst, a small town outside of Marysville, Yuba County’s seat. Winward grew up in the suburbs of Ft. Worth, Texas and was used to having a choice of doctors. Now, she must travel to Sacramento to see eight of James’ specialists. Getting a second opinion will likely mean a trip to San Francisco.
Winward’s life revolves around the schedule she carefully updates on her smart phone. Typically, she makes five trips to Sacramento a month. The clinic at UC Davis where James gets the transfusions that keep him alive is open only once a month. His occupational therapist, one of two of James’ medical providers who is local, can’t communicate easily with his other doctors because of patient privacy laws, Winward said.
“It’s very complicated,” said Hrico of coordinating care for a child with multiple medical needs. In addition to coordinating doctors, families have to navigate several bureaucratic systems to make sure their children get care they can afford. Hrico helps families understand if they are eligible for California Child Services benefits and what benefits they are eligible for, and if they are eligible for Social Security for their child.
The problem of poorly coordinated care is compounded by geographical distance, Schor said. When a child is in a relatively closed system like a hospital, providers are using the same medical records. They see each other in the hallways. There are established lines of communication, formal and informal.
Relationships between primary care pediatricians and pediatric specialists can help compensate for the general lack of coordinated care for children outside of such a closed system, Schor said.
Rural pediatricians, however, are less likely to have such developed lines of communication. “When this child needs to see a pediatric specialist, and probably is the only child in your practice who will ever need this particular specialty, you are unlikely to know that specialist and have a relationship with them,” Schor said.
Eventually, the lack of coordination may have health consequences for the child. Duplication of services, prescribing medicine without complete medical records and failure to catch small problems before they become big are likely complications.
“If you don’t have communications systems established,” Schor said, “and the parent is struggling to be the go between, things get lost in translation.”
“I truly believe this is a real and substantial issue,” said Schor, who has traveled throughout the state collecting anecdotal information from families of special needs children. Developing solid solutions requires more systematically collected data, he added.
Some solutions that have promise include electronic medical records, records that are controlled by parents on a website where doctors can enter information, and public health nurses who coordinate care.
Though it’s a popular concept, a medical home probably isn’t the best solution for special needs kids in rural areas, Schor said. The medical home model relies on a primary care physician’s office coordinating care. Rural doctor’s offices, however, will see few special needs children in their practice, and typically children don’t require care coordination.
A public health nurse working with children across a county or counties is probably a better solution, Schor said. “If every county tries to solve it themselves, that’s poorly coordinated care again.”
In the meantime, families struggle to do the job on their own. Though Cynthia Winward no longer makes the six to eight trips a month to Sacramento that were routine during James’ first year, she still has to make regular trips to the city, and worries about what will happen when she has more children.
“I’m going to have to take care of two, so it’s like okay…do I leave him at the hospital alone for three days so I can take care of my other kids?” Winward said, “Or do I drive my kid up there every day back and forth?”
Winward has seen first-hand the effects these difficult situations can have on children.
“We’ve been in rooms with kids who did not have any visitors at all,” Winward said. James once shared a hospital room with a young girl who didn’t have a single visitor in four days. “She didn’t have somebody there. You see things like that, and you know it’s inaccessible.”