A young child who is not making eye contact, rolling over, waving “bye-bye” or meeting other milestones by the usual age may need to be evaluated for a developmental disorder or delay. But across the country, children wait for months, or even years, to see a specialist.
At least 19 million children and teenagers in the United States have disabilities such as autism spectrum disorder, cerebral palsy, attention-deficit/hyperactivity disorder and other conditions due to impairments in physical characteristics, learning, language or behavior, according to the American Academy of Pediatrics. Fewer than 800 board-certified developmental-behavioral pediatricians practice in the United States.
A five-year $1.3 million Developmental-Behavioral Pediatrics (DBP) Training Grant awarded to the Department of Pediatrics is part of a national program to increase access to evaluation and services for children and teenagers with developmental disabilities. Funding is provided by the Health Resources and Services Administration/Maternal Child Health Bureau.
Baylor is one of only 13 grant recipients nationally and the only one in Texas. Recipients will recruit and train diverse medical providers to address medical and psychosocial aspects of development.
The Division of Developmental-Behavioral Pediatrics (DBP) at Baylor College of Medicine and Texas Children’s Hospital aims to increase access to care by adding an innovative new program and expanding several existing programs.
“The most exciting and innovative thing is having an opportunity to train interested pediatricians in the community through one-year training programs,” said Holly Harris, MD, Assistant Professor of Pediatrics, DBP specialist and Fellowship Program Director. She is the principal investigator on a five-year, $1.3 million training grant from the Health Resources and Services Administration/Maternal and Child Health Bureau. The grant supports novel approaches to training primary care pediatricians in developmental pediatrics to better meet the needs of their own patients and the community at large. Earlier assessment and diagnosis means earlier access to therapies and other support both in the community and where applicable – at school.
“This is a new population to include in our training. Our pediatricians clearly are motivated, as evidenced by the high numbers who applied for this year’s two training positions. They want to be able to help their patients and families get the help they need as soon as possible – to recognize diagnoses early, get children into therapies and make their quality of life better,” Dr. Harris said.
With the primary care pediatrician training program, DBP can begin to make an impact in reducing the number of children waiting up to a year and a half for evaluation and treatment at Texas Children’s Meyer Center for Developmental Pediatrics and Autism. Two community pediatricians selected for the training spend one day per week for one year:
“We're hoping to equip pediatricians with the tools, the language and the confidence to do some developmental assessments in the office, where they can make and effectively document the diagnosis,” Dr. Harris said. “Many times, families can't access what they need without a documented diagnosis from a medical provider.”
“The children diagnosed by their pediatricians never need to get on our waitlist,” she added. “They can start accessing therapy and school services. That reserves our clinic for those more complicated cases in which an expert opinion is needed.”
Early diagnosis is important to help individuals with developmental differences reach their full potential.
“The first five years of life are important periods of development for children, so that’s when you want to intervene,” said Kathryn (Katy) Ostermaier, MD, FAAP, Chief of Service for Developmental-Behavioral Pediatrics at Texas Children’s and Professor of Pediatrics at Baylor College of Medicine. “There is a lot of research to suggest that early intervention works, and it makes a big difference.”
With the right support, many people could grow to be partially or fully independent. Another factor in Texas is the existence of waiver programs that provide services to adults for monetary, group home or personal care assistance.
“The waitlists for waivers are 16 years long,” Dr. Harris said. “A crucial part of our training is to ensure that when a diagnosis is made, parents are immediately advised to sign up for these waiver program lists, despite how far into the future it may seem. We emphasize this because we don’t want the child to reach adulthood and realize they missed out on vital resources because they weren’t on these lists. By taking these steps early on, we aim to set them up for success.”
The first two primary care pediatrician trainees say that the program has given them more than they expected.
“I feel so empowered to be able to help my patients in my clinic home. I can go beyond referring them to the Developmental Behavioral Pediatrics Clinic,” said Olusimidele (Simi) Ayeni, MD, PhD, FAAP, who practices at Texas Children’s Pediatrics Katy, west of Houston.
They have toured several facilities that offer programs for individuals with intellectual and developmental disabilities.
“Learning about these resources in Houston has been amazing,” Dr. Ayeni said. “I shared a flyer about a summer camp with a mom just last week. Before the training, I had no clue those programs even existed.”
They have been particularly pleased to share the newly acquired information with others in their offices.
“My office, my managers and my partners have been super supportive and excited for what we’re doing because we go back and tell them about all the things that we’ve learned,” said Desiree Evans, MD, a physician at Texas Children’s Pediatrics Palm Center in southeast Houston. “They see the importance of this and how wonderful this program has been, not just for myself, but for our clinic, our practice and our patients.”
In addition to the one-year, one-day-per-week primary care pediatric training program, the grant enables:
“This program funded by the DBP training grant gives us an opportunity to reach more people with education about developmental pediatrics and to train more physicians to care for these children in their clinical practices,” Dr. Ostermaier said. “We couldn’t be more excited!”