Children Experience Long Wait Times for Developmental and Behavioral Specialists

Children Experience Long Wait Times for Developmental and Behavioral Specialists

A Rutgers study found that a severe shortage in developmental pediatricians is causing delays in diagnosing autism and other disorders

A severe shortage of developmental pediatricians, particularly those who can communicate with non-English speaking families, is causing delays in diagnosing autism, attention deficit and hyperactivity disorder and cerebral palsy, according to a new Rutgers study.

The study found more than half of the specialized developmental pediatric programs associated with children's hospitals had average wait times of five and a half months.
The study, published in the Journal of Developmental & Behavioral Pediatrics, found that there are only 1,000 development pediatricians in the United States, specially trained to treat these disorders. Early intervention is critical to help families develop strategies to manage behavioral, emotional, social and educational struggles. An estimated one in six children nationally has these development disorders.

“Relative to the number of children who would benefit from seeing a developmental pediatrician, the number of specialized physicians in the field is relatively few,” said Manuel Jimenez, assistant professor of pediatrics, and family medicine and community health at Rutgers Robert Wood Johnson Medical School, who led the study. “This has the potential to limit access to rigorous diagnostic evaluations which, in turn, can ensure access to specialized services and therapies. Given that individuals with limited English proficiency often have difficulty navigating the health care system, we were especially interested to see if there would be differences when we called in English versus Spanish.”

The study explored the barriers to obtaining an appointment for an initial evaluation, after finding no documented evidence on the subject. Members of the research team posed as a “mystery shoppers” calling specialized developmental pediatric programs associated with children’s hospitals across the country to request an appointment.

Of the 140 unique programs that were called, 75 provided a wait time with an average of nearly five and a half months. Among these, 62 were reached in Spanish within a 24-hour period of the initial call. Only 55 percent offered a wait time estimate and nearly one-third did not offer any Spanish-language services for the caller.

Manuel Jimenez, assistant professor of pediatrics, and family medicine and community health at Rutgers Robert Wood Johnson Medical School, led the study.
Photo: John Emerson
 Although Jimenez said he was not surprised to find long wait times nationally, he was surprised at the number of programs not offering callers any indication of when they could get an appointment to see a pediatrician who speaks Spanish. He was equally surprised at the lack of accommodations for families for whom English is a second language.

 “Our study serves as a reminder to physicians to be mindful of the difficulty our patients experience to obtain an initial assessment including an extended waiting period and barriers to language services,” said Jimenez, who also is an attending developmental and behavioral pediatrician at PSE&G Children’s Specialized Hospital. “For researchers and policy makers, our findings underscore the importance of evaluating different care models to leverage the strengths of professionals to ensure that children with developmental concerns reach the appropriate providers at the appropriate time.”

Jimenez emphasized that more work is needed to identify strategies that provide better access to all children who are in need of specialized services, as developmental and behavioral problems are among the most prevalent health concerns faced by children.

Besides Jimenez, the research team included Emmanuel M. Alcaraz,  a student in the MD/PhD program at the medical school; Jerome Williams, distinguished professor and Prudential Chair in Business, Rutgers Business School; and Brian L. Strom,  Chancellor, Rutgers Biomedical and Health Sciences.  Jimenez’s work is supported by the Robert Wood Johnson Foundation Harold Amos Medical Faculty Development Program.


For media inquiries, contact Jennifer Forbes Mullenhard at jenn.forbes@rwjms.rutgers.edu or 732-235-6356.