Since the COVID-19 pandemic began in 2020, child development specialist Dr. Mary L. O’Connor Leppert has noticed a significant drop in referrals to the Maryland Infants and Toddlers Program, the state’s early intervention program. Referrals have also declined at Kennedy Krieger Institute, where clinicians diagnose and treat pediatric developmental, behavioral and mental health disorders.
The drop appeared to be quite steep. When comparing referrals from March through August 2019 to the same months in 2020, she found Kennedy Krieger Institute’s referrals for children younger than age 4 had declined 41% overall, with variations based on programs. The drops in program enrollment included a 35% reduction in medical referrals, a 47% reduction in behavior referrals and a 69% reduction in mental health referrals.
Leppert, a member of the medical staff at Kennedy Krieger Institute’s department of neurodevelopmental medicine, is the director of its Center for Development and Learning and co-director of its Infant Neurodevelopment Center. She wondered what was keeping kids away from diagnosis and services.
What happens when you can’t ‘trust your gut?’
The question “brought me back to my initial training in development,” says Leppert. She asked herself, “How do children come to the attention of the professionals who can help them?” First, parents can “trust their gut” with their kids to “identify when something’s not right.” Early childhood educators and pediatricians make up the other two potential identifiers of developmental delays.
“Access to all of these appraisals is different now,” says Leppert. “I don’t know what’s happening, but these are the factors I see coming into play.
“We say ‘trust your gut’ to parents,” says Leppert, but gut instincts are now hampered by social distance. In these circumstances, parents no longer see their child interacting in a normal social context. Humans are social animals, but under pandemic restrictions, kids are no longer “playing or having much interaction with children outside their household,” she says.
Leppert and her colleagues recently submitted an editorial to the journal Pediatrics that states, “As families isolate, parents do not have the same opportunity to draw comparisons with other children to appraise development.”
Comparison is key to identifying developmental issues, Leppert believes, because developmental milestones are based on collective averages. Today, however, first-time parents can’t compare their child’s development to that of other children. Even experienced parents have fewer opportunities to compare their child to children outside their family. In these circumstances, only “the youngest child of a mother of multiple children” might be well-positioned to spot developmental differences, says Leppert.
The experience of daycare and school also places parents at a disadvantage to meet and interact with other families. While some preschools and daycares continue to be closed, even the ones that are open enforce strict limitations on interaction between families and children at school and at “aseptic” drop-off and pickup times.
Teachers and daycare providers, who occupy the next tier of familiarity in children’s lives, no longer have the face-to-face interaction they used to have.
Declines in pediatric wellness checks may also impact screening for physical and cognitive development, including social, learning and behavioral differences, autism spectrum disorders and genetic syndromes. A 2020 University of Oregon Rapid Assessment of Pandemic Impact on Early Childhood (RAPID-EC) study found that 28% of families were missing a well-child visit since the pandemic outbreak began.
“Diagnosing and addressing these issues as early as possible is essential for achieving optimal outcomes over time,” the study’s research team notes. “If barriers to childhood preventative health measures are not addressed as the coronavirus pandemic continues, we are likely to see many children experience serious health consequences.”
What are the risks for referral decline?
Leppert sees another risk from the decline in early identifications. Problems that parents may label as behavioral may instead have a root cause in developmental issues. “The younger the child presents with behavior problems, the more likely they are to have an underlying developmental cause,” Leppert says.
Not all behavior changes indicate a developmental issue, Leppert says. “Children are living in environments of stress—because parents are living in environments of stress—and there are going to be behavior problems from that.”
Child development services can help develop the skills we now lack the opportunity to practice in our daily lives. Leppert says these services are “so invaluable in the early years, when children are developing and forming patterns.” In addition, a therapy service provider brings an expert’s eye to problems caused by the condition that might not be recognized by a parent. “For example, if your child has cerebral palsy and gets a fancy, expensive wheelchair,” she says, “if they don’t have the neck tilt, or the table at the right height, you’re not treating tight muscles or working with movement patterns that optimize development.”
If parents have concerns or gut feelings that something isn’t right, says Leppert, she recommends bringing it to the attention of their child’s pediatrician, who can then refer them to a child development specialist. Even if you aren’t comfortable coming into a doctor’s or specialist’s office, many pediatricians offer telehealth.
Although diagnoses and assessments of developmental conditions have dropped dramatically, disabilities continue to exist whether they are identified or not.
How do you know whether your child is developing as he or she should? Explore our guide to developmental, behavior, language, motor and social skills.