Ethnic Special Needs Children Face Longer Wait For Health Care

New America Media, News report, Vivian Po,

Last week, Deborah Dalton, a 50-year-old African American mother, was ecstatic to receive the oxygen concentrator that finally arrived at her San Francisco residence. Her son suffers from Down syndrome and severe sleeping apnea, and he needed it desperately.

The oxygen concentrator, a device connected to a breathing machine to ensure unobstructed breathing during sleep, Dalton said, was supposed to arrive last November. She and her son had waited for four months to get it, despite frequent phone calls.

In fact, Dalton was not the only one who had to wait for medical assistance. Many parents with children with special health care needs also find themselves standing in longer lines, no matter whether it’s for medical devices or for getting an appointment with pediatric specialists.

Children with special health care needs (CSHCN) are those who have, or are at increased risk for, a chronic physical, developmental, behavioral or emotional condition. They require health and related services of a type or amount beyond that required by children generally. CSHCN are those with conditions that include Down syndrome, autism, developmental delay, and other mental and physical disabilities.

“The wait has been crazy,” said Dr. Gregory Janos, president of Children’s Specialty Care Coalition (CSCC), a non-profit association representing more than 1,000 pediatric specialists in California. CSCC released a statewide survey in December 2009 to determine a patients’ waiting time for pediatric specialists. Medical directors from nine medical groups, representing 2,000 pediatric specialists, were surveyed. 

Pediatric specialists are physicians who are uniquely qualified to treat children with complex and chronic conditions because the developing bodies and emotions of children are significantly different from those of adults.

According to the survey, the waiting time for a pediatric specialist is between 16 and 114 days. For example, autistic children have to wait an average of 54 days to see a pediatric neurologist; diabetic children have to wait 56 days to see a pediatric endocrinologist, and children with heart conditions have to wait 39 days before they can see a pediatric cardiologist.

Janos, who is also the medical director at Sutter Medical Center’s Children's Center in Sacramento, said that if the wait for a non-emergency doctor visit exceeded two weeks, it could jeopardize a child's health. “A child who should see a specialist can end up in an emergency room and be seen by a non-specialist, which is not adequate and can be dangerous, ” he said.

Janos explained that the long wait was due to a shortage of pediatric specialists in the country. He said medical students are reluctant to enter pediatric specialties because their medical reimbursement rates are only two-thirds of those of adult specialists. Yet, they need to stay longer in school and shoulder heavier school loans.

Pediatric specialists require four years of medical schooling, three years of training in pediatrics, and three more years of training in their chosen specialty, in order to graduate. Moreover, on average, pediatric specialists bear $103,000 in loans after graduation, while MD graduates only carry $87,000 in loans. 

Many ethnic minorities are discouraged from studying pediatrics because the communities they serve are often from a lower income group and covered by insurances with lower reimbursement rates. Therefore, it will take longer for them to repay the debt upon graduation. Reports show that only 5 percent of historically underrepresented minority specialists can clear their debt in five years, compared to 16.5 percent of non-historically underrepresented minorities.

But more importantly, pediatric specialists have been leaving California since the recession hit, when reimbursements were lowered due to cuts in medical expenses, but taxes and cost of living remained high, Janos said.

The CSCC survey shows nearly 22 percent of current pediatric specialist positions in California remain open, with recruitment time averaging one to two years. Pediatric cardiologists, neurologists and gastroenterologist have the highest number of vacancies.

As a result, pediatric specialists, such as those working at Janos’s medical center, are seeing 20 to 30 patients a day. Some specialists have to turn some patients away for want of time.

According to kidsdata.org, a data and resource website that offers more than 300 indicators on the health and well-being of California’s children, 27.6 percent of CSHCN have difficulties getting the specialty care referrals they needed.

It is especially true for low-income families who are covered by public insurance with lower reimbursement rates, such as Healthy Families and MediCal.

Nancy Lim Yee, executive director of Chinatown Children Development Center in San Francisco, an organization providing mental health services to children and which accepts MediCal, said even a few years ago, the reimbursement of an assessment test on developmental delay could range from $600 to $900 with private insurance, while MediCal only reimbursed around $100. She believes the gap is even wider today.

Minority parents have even fewer choices, Yee explained, because they generally choose from a pool of bilingual or culturally competent specialists they can trust and communicate with. Families are also traveling farther to find that fit, or to where translation services are provided.

Even doctors who made the referrals are feeling frustrated. Dr Peter Ng, a public health pediatrician at San Francisco’s Chinatown Public Health Center, and who has been doing referrals for more than 10 years, said referrals could bounce back and forth for three to four months before he manages to lock down appointments for his clients.

Apart from requesting authorization from insurance providers, which is becoming increasingly strict and time consuming, Ng also needs to do massive follow-up communications with the specialists to make sure his clients do not get dropped because of the heavy workload of the specialists.

In order to eliminate some of the referral difficulties and decrease the waiting time for these children, Yee and Ng started a project approximately two years ago, where Ng brings a pediatric psychiatrist to his clinic once a week to provide basic diagnosis and recommend medications for children with behavioral problems.

Yee and Ng said the project has been quite successful, but more pediatric specialists are still needed.