Whether parents need to find a cardiologist to investigate a heart murmur or a pulmonologist to get their child's asthma under control, long waits can put kids' health at risk by delaying diagnosis and treatment. As a result of the situation, families may also have to pay more. Medicaid could help Karen Hawkins, of Schererville, Indiana, cover specialty care for her wheelchair-bound daughters, ages 8 and 15, who both have complex disabilities.
However, in order to qualify, they must see a specialist in their home state - and the closest one is three hours away. Instead, Hawkins crosses the Illinois border to see doctors an hour away in Chicago because traveling with her daughters is very difficult. Whatever insurance doesn't cover, we pay out-of-pocket, says Hawkins. Sometimes, the consequences of the shortage can be tragic.
In 2006 Phyllis and Andrew Rabinowitz took their newborn daughter, Rebecca, to an emergency room in their New Jersey suburb because she was severely congested, wheezing, and lethargic. Although the staff physician - who wasn't a pediatric emergency-medicine specialist - insisted Rebecca just had a cold and sent her home, she died a day later from a serious viral infection. Rebecca might be here today, if she had been able to see the right specialist, says Phyllis. Hoping to save other babies' lives, the couple started the R Baby Foundation, the only nonprofit focused on improving pediatric emergency care by funding training programs for doctors.
Getting more pediatric specialists into communities won't be easy. Experts have identified the key forces that are driving the crisis, and they're working hard to find solutions.
Demand Is Growing
Although there are actually more pediatric specialists practicing today than there were ten years ago, there are even more children who need to see them. One reason: the increasing
number of kids diagnosed with chronic conditions like ADHD, asthma, depression, autism, obesity, and type 2 diabetes. But kids with complex health issues aren't the whole story. Thanks to medical advances that make it easier to detect a wide variety of problems and do something about them, more children are being diagnosed and treated. In addition, more children with serious special health needs survive infancy than ever before. General pediatricians may believe they don't have the expertise to treat a child with a complicated condition, so they make a referral, says Parents advisor Harry L. Gewanter, M.D.. a pediatric rheumatologist in Richmond. Virginia. However, the demand for specialists is also a cultural issue. Americans want the best, and parents often feel they must see a specialist.
There is a particular need for doctors with mental-health expertise, which the AAP survey says are in shortest supply. Child psychiatrists are almost impossible to find in many parts of the country, says Polly Aran go. cofounderof Family Voices, an advocacy group for children with chronic health conditions and disabilities. When Norma Rosenfield, of Los Angeles, suspected that her 3-year-old son, Daniel, had autism and finally convinced her pediatrician something was wrong, there was an 18-month waiting list to see a developmental pediatrician who could diagnose the condition. After nine months, he was able to get an official diagnosis from a psychologist instead.
It Takes Real Commitment
Despite the huge unmet need, not enough new doctors are choosing to go into specialties. Unfortunately, financial concerns can be a factor: Pediatric surgical specialists often earn significantly less money than general surgeons, and becoming any type of subspecialist reguires at least two extra years of low-paying fellowship training - at a time in their lives when most young physicians are already shouldering a six-figure debt from student loans. It takes so long for subspecialists to pay off all their debt that their own children are often ready for college before they're making real money from their practice, But if you're a pediatric nephrologist, only a small segment of the population needs your services, so a small city or rural area just won't provide enough patients to support you.
The Government Limits Training
In the 1980s and 1990s, experts thought HMOs would make health care more efficient by funneling patients through primary-care physicians. These gatekeepers were expected to focus on prevention and solve common problems so that there would be less need for subspecialists. As a result, the government limited the number of federally funded slots for specialty fellowships at medical schools and teaching hospitals to cut costs. But managed care didn't take hold the way people expected, says Futch. Yet the caps - set into law by the Balanced Budget Act of 1997 - are still in place. That means doctors interested in specializing may not get one of the coveted slots or might be discouraged from applying for one. The Health Resources and Services Administration has recommended lifting limits on training and paying for more fellowships with government and private funds, but parents need to help raise awareness about how this issue affects millions of individual kids (see Advocate for Change on page 169). Insists Dr. Pletcher, As the country focuses on strengthening the entire health-care system, we need more people to say, 'Don't forgetthe children.'
Find a Good Specialist
You may not have a say about the long waits, but you probably have more than one doctor to choose from. To narrow your options: Talk to your pediatrician, who will know which doctors in your area are most appropriate for your child's condition, says Dr. Jeffrey Loughead. Check whether a doctor is certified by the American Board of Medical Specialties by visiting abms.org. Phone your hospital's physician referral line for help selecting a doctor.