ADELANTO, Calif. — For the past five years — ever since her son, Marc, was diagnosed with cerebral palsy at 2 months old — Denise Williams of Adelanto has been trying to schedule doctor’s appointments. Week after week, she calls specialists, begs for referrals from Marc’s other doctors or sometimes just shows up at clinics, hoping the doctors there will agree to see her son.

Even when Williams can find a specialist who is willing to see her son and accepts his insurance, there’s a long wait for appointments. At times that’s meant Marc has gone without medication to manage his seizures or been unable to see a speech therapist to help him learn to talk. When he was 2, he had to wait two years to see the various specialists needed to approve the removal of his breathing tube.

“Always they kept postponing it or it was hard to get an appointment to see the doctor,” Williams said. “Or we would see the doctor and then we would need to get a clearance from other doctors, and then it’s hard to get those appointments and all the appointments are always months down the line.”

California has a severe shortage of pediatric specialist doctors. The state has only one pediatric medical toxicologist for all 8.7 million children in California, for example, and one child abuse specialist for every 258,000 children, according to data from The American Board of Pediatrics. The shortage spreads out over most disciplines, with one pediatric sleep medicine doctor for every 224,939 children, one sports medicine doctor for every 204,015 children and one hospice and palliative care doctor for every 190,709 children.

The severe shortfall puts medically fragile children at risk for worsening health and missed opportunities for life-changing treatment and support. Many families wait months — and in some cases a year or more — to get appointments. Sometimes they’re forced to drive halfway across the state to see a doctor. Sometimes by the time they see the specialist, the child’s condition has deteriorated or the window of opportunity for treatment that could halt or significantly reduce the progress of a disease or disorder has closed.

The shortage of specialists affects all children but is especially pronounced for children with disabilities and those from low-income families, because these children rely on the state’s health insurance program, Medi-Cal. Some specialists won’t accept the state health insurance plan and if the children’s families cannot afford to pay for private insurance or out-of-pocket care, then — despite having health coverage — they will not have access to doctors they need to see.

Pediatric specialists are pediatricians who undergo extra years of medical training so they can treat children with complex health care needs such as cerebral palsy, congenital heart disease, cystic fibrosis and cancer. Children’s hospitals and medical centers across California report that it often takes a year or more to fill these positions — if they can fill them at all.

“It’s become a crisis,” said Dr. Carlos Lerner, a pediatrician who oversees a program providing specialty care for medically complex children at the Ronald Reagan UCLA Medical Center. “The fear is not just about today, but just projecting the current trend into the future, that’s where we really get worried.”

Children’s hospital leaders and pediatrician groups are calling on the state and federal government to increase the amount they pay these doctors for treating children and provide more training incentives, which are well below those of Medicare and private insurance. Without these actions, experts warned that shortages will only get worse.

Close to 360,000 children in California have medically complex conditions, according to the Children’s Specialty Care Coalition, an organization representing medical groups and hospitals treating children with special health care needs across California. That number is expected to double in the next decade as medical and technological advances reduce mortality rates for seriously ill children. Like Marc, these kids typically require care from multiple subspecialty physicians.

The American Board of Pediatrics report, using data from 2021-2023 across 20 pediatric disciplines, found that the number of specialists varied widely across disciplines, ranging from the one pediatric medical toxicologist for the entire state to 606 neonatal-perinatal pediatricians in California, or one for every 14,476 children. A child will require a specific specialty based on their condition, and it’s common for children with complex health care needs to need treatment from a range of specialists. The wait times compound for these children, as they wait months for one appointment, and then months for another, often delaying their diagnoses or treatment.

While there are no defined ratios for how many specialists per child there should be, California ranked in the middle compared to other states when averaged across disciplines, although in some subspecialties such as sleep medicine, nephrology, emergency medicine and hospice and palliative care it ranked in the bottom half. Specialty shortages are a problem nationwide.

Studies show that children are more likely to survive when treated by pediatric specialists rather than those trained to treat adults.

To become a pediatric specialist, medical students typically train for 10 years — that’s an additional three years on top of completing four years of medical school and a three-year general pediatric residency. But that extra training doesn’t pay off financially. On average, pediatric specialists earn 25% less than adult medicine physicians trained in the same specialty. Many also earn less than general pediatricians, despite their extra years of training. This difference in compensation — exacerbated by rising levels of student medical school debt — is discouraging new doctors from entering pediatric specialty professions, even as the health care system faces a wave of older doctors retiring.

“It makes it very, very difficult to attract people to take this on as their life’s work, and to embark on this journey,” said Dr. Sherin Devaskar, executive chair of the Department of Pediatrics at UCLA. “They want to help children and their families. But they want to be in a situation where they can at least pay back their educational debt and at least be comfortable and have a life.”

The consequence is that medical students are increasingly shunning pediatric specialties. Hospitals and medical centers that train specialists report that they can’t fill their residency programs. In some specialties, such as pediatric infectious disease, nephrology and developmental pediatrics, there are only enough applicants to fill about half of the training slots nationwide.

Recruitment of experienced specialty pediatricians is also suffering as hospitals and medical centers compete for a shrinking pool of potential applicants. The problem is particularly acute in rural areas. Dr. Satyan Lakshminrusimha, the pediatrician-in-chief at UC Davis Children’s Hospital which treats children from northern California and Oregon, said he’s been trying to recruit a child abuse specialist for seven years. He’s also had unfilled openings for two genetic specialists for almost three years, and only just managed to fill a position for a pediatric gastroenterologist after a year-long search. California’s high cost of living and relatively low salaries for pediatric specialists are major factors, he and other physician leaders said.

The crux of the problem is low reimbursement rates, experts said. Upward of 70% of children with complex health care needs in California are covered by Medi-Cal, the state’s name for the federal health insurance program Medicaid, which serves people who qualify based on income or have certain disabilities. Many children also depend on a related program for children with disabilities called California Children’s Services. This means that compensation for doctors who treat children needing specialty care is usually heavily reliant on these programs.

But Medi-Cal doesn’t pay doctors as well as other health insurance programs. Medicare, the federal health insurance for people 65 or older and some younger adults with disabilities, reimburses doctors significantly more for care than Medi-Cal, often for the same procedures. A comparison by the Kaiser Family Foundation found that Medi-Cal reimbursement rates amount to only about 70% of the rates paid by Medicare. Medi-Cal rates are set by the state, while the federal government sets Medicare rates.

“Medi-Cal in California compared to other states is generous in the range of services that it provides, but it’s near the bottom of the list in terms of how much (it) pays for each service,” Lerner said. “As a predictable consequence, you may be eligible for a service, but the access to it is poor.”

Meanwhile, the average pediatric specialist nationwide is over 50 years old, and many are retiring. In a 2022 survey, over 90% of Children’s Specialty Care Coalition members said they expected a significant number of pediatrician specialists to retire within their organizations in the next five years.

Impact on families

Ultimately, the consequence is that families are having an increasingly hard time getting appointments with pediatric specialists. When they do find one, they must often travel further and wait longer for an appointment than they did in the past. This puts children at risk for more serious medical problems, emergency department visits, developmental setbacks, missed school, and delays in diagnoses that would allow them to get vital treatment and special education services. The delays also can create stress and anxiety for caregivers as they struggle to care for their child, sometimes without diagnoses or treatment. Some resort to paying out of pocket at considerable cost.

“Waiting for answers is not only stressful for families but is detrimental to that child’s health and wellbeing,” said Assemblymember Akilah Weber, an OBGYN who has pushed for the state to increase Medi-Cal reimbursement rates to pediatric specialists. “The earlier a child is diagnosed and treated, the better the potential outcome.”

Living in Adelanto, a desert community in San Bernardino County with fewer than 40,000 residents, has made finding specialists particularly difficult for Williams. The nearest children’s hospital, Loma Linda University Children’s Hospital, is more than an hour away. Sometimes she has to drive even further to Los Angeles or Orange County to take Marc to see the specialists he needs. Those drives are often a day-long ordeal.

“As a parent it’s a lot of drive time,” she said. “I’ve got to take hours to get ready, then drive in the traffic, and the appointment might only be 15 to 30 minutes to 45 minutes, and then hours of traffic coming back home. … It’s kind of draining.”

In surveys of 646 caregivers of children and youth with special health care needs by the University of California San Francisco in 2023, a quarter of families reported waiting more than three months for new appointments. And in 75% of cases, wait times exceeded standards set by the state, which require that health plans ensure patients can get an appointment within 15 business days, or three business days if the matter is urgent.

Some families reported dire consequences because of the extended wait times, including failure to gain weight because of a faulty feeding tube, unsettling allergic reactions, and a child who fell behind with developing eating, communication and walking skills.

Williams said she had to wait over two years for her son to have a breathing tube removed from his neck that he was fitted with as a baby. She said she noticed he no longer seemed to need help with breathing when he was 2 years old. But it took so long to get appointments that Marc didn’t have the surgery until last summer. Marc now has difficulty swallowing because he had the tube in for so long, she said, and it’s interfered with his ability to get speech therapy.

“I just wish the health care was better out here,” she said. “I wish I could afford better health care because then I could get better help.”

Solutions

Raising Medi-Cal reimbursement rates to equal or higher than those offered by Medicare is the top solution proposed by experts to ease the pediatric subspecialty recruitment crisis. Devaskar said rates should be set above those of Medicare because working with children and their families is often more complex and time consuming than treating adults, which also affects physician compensation.

So far, efforts in California to do this have been unsuccessful. A 2022 California bill to increase Medi-Cal reimbursement rates to physicians serving children with special health care needs failed to advance in the legislature. The National Academies of Sciences, Engineering, and Medicine has also called on Congress to provide federal funds to states to increase Medicaid payment rates for pediatric services.

Additional proposed solutions from the National Academies and others include legislation to expand access to telehealth, improve collaboration between primary care and specialty pediatricians, increased funding for pediatric specialty residency programs and expanding loan forgiveness programs for those entering pediatric fields.

“It’s not just about the present,” said Devaskar. “Twenty percent of the country is children. They’ll be 100% of the future population. We’re investing in the health of the future of this country.”

Williams, meanwhile, is still trying to find a pediatric pain specialist for Marc and has trouble getting timely appointments with his other specialists. She spends about four hours a week on the phone trying to secure appointments. Sometimes she can get some scheduled.

And sometimes, the calendar stays blank.

This story was produced in partnership with the California Health Report.

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