Black and Latino children with developmental delays are much less likely — 78 percent less — than white children to receive the early intervention services they need, according to a 2012 study published in the Journal of Developmental and Behavioral Pediatrics.
In a study published earlier this month, researchers attempt to figure out the possible reasons why.
According the study, a developmental delay is defined as a condition in which children do not reach their milestones for motor, language, cognitive, social, behavioral, or adaptive skills. Early intervention services are customized services to help the child catch up and increase his or her chances to succeed in life and school. One in six children have a developmental disability, according to the CDC. These conditions can impact day-to-day functioning, starting during the developmental period, and sometimes lasting throughout the person’s lifetime.
The researchers interviewed low-income African-American and Hispanic moms to understand the role their personal beliefs play on why services aren’t being utilized.
Some of the reasons included feeling that their children weren’t much different from other children they observed, the belief that children develop in their own time, and feeling overwhelmed with other social and financial stressors.
"The perspectives voiced as themes in this study are common opinions that are expressed nearly daily by the African-American mothers in our practice during discussions concerning developmental challenges,” said Dr. Lorraine Beraho, a pediatrician with Unity Healthcare, Inc., a community healthcare center in Washington, D.C.
Beraho added that mothers who seek care for their children at the center live in one of the most socioeconomically challenged neighborhoods in the area, with a host of stressors such as safety, homelessness, and financial instability.
“Understandably, a mother with these circumstances is concerned about medication refills and vaccine updates, not a delay that [they believe] will for all intents and purposes improve with time,” said Beraho. She also said that these beliefs are not unique to African-American mothers, but related to any group experiencing socio-economic hardships.
“Open and honest conversation is key,” said Dawn Magnusson, PT, Ph.D., author of the study, and assistant professor at the University of Colorado School of Medicine Physical Therapy program. “Providers have an opportunity to listen to and engage with parents about their beliefs, and involve them as equal partners in the decision-making process."
The study also found that the moms weighed opinions from their social networks just as much as the doctors. But, Beraho said that isn’t always a negative.
If a mother’s social network includes another mom whose child’s speech and motor skills improved from the early intervention program, Beraho said, that mom is more likely to believe that the program is worth it.
However, both Beraho and Magnusson stressed the importance of the provider-patient relationship when finding the best treatment for children with identified delays.
“Describing the big picture often strikes a chord with some of my mothers,” said Beraho. “I must take the time to explain the implications of such delays to the patient’s learning and future success.”
All of the children whose mothers participated in the study had access to a pediatrician, so access to a physician was not the issue. The bigger hindrance was understanding the complicated referral process.
Magnusson said that simply providing the referral isn’t enough. The earlier delays are identified and treated, the better the child’s outcome.
“These findings highlight the importance of supporting families throughout the referral process,” she said.