Enhancing early diagnosis of developmental delays in Pennsylvania's children

Children who are mistreated at a young age are more likely to experience a wide range of developmental delays and health problems, according to Christian Connell, Ken Young Family Professor in Healthy Children and professor of human development and family studies at Penn State. To combat these developmental problems, federal law requires that children under the age of three who are abused or neglected be evaluated for a developmental delay. Connell led a team of researchers who found that a child's involvement with the Pennsylvania child welfare system (CWS) influenced how likely they were to be diagnosed with a developmental delay before the age of three. 

Using data from the Pennsylvania CWS and the Pennsylvania Office of Medical Assistance Programs, the researchers conducted a study - published today (Oct. 24) in JAMA Health Forum - that found children who were involved with CWS in Pennsylvania, especially those in foster care, were more likely to be diagnosed with a developmental delay than other children in similar households who were not involved with CWS. 

Additionally, the researchers found that children who were involved with CWS were more likely to be connected with preventive medical care and early intervention services than other at-risk children in the commonwealth. 

Developmental delays and connecting children with services 

When a child fails to reach milestones - including physical growth targets or skills like rolling over, smiling and language development - at the same time as other children their age, they could be diagnosed with a developmental delay. Like many health problems, early intervention can best address these delays, but the longer these delays are left unidentified or unaddressed, the more likely a child is to experience lower academic achievement, higher levels of acting out and, eventually, lower lifetime income as they grow, according to Connell, who directs the Penn State Child Maltreatment Solutions Network and is a Social Science Research Institute co-funded faculty member. 

There are two major barriers to providing services to children in this population. On the one hand, the services are voluntary. Families sometimes do not or cannot engage with services for their children's developmental delays. On the other hand, some children have delays that are never identified. We did this study to understand whether connection to CWS influenced which children were identified with one or more developmental delays and subsequently received appropriate medical and early intervention supports." 

Christian Connell, Ken Young Family Professor in Healthy Children and professor of human development and family studies, Penn State

According to Connell, identifying delays is the first step in treating them, which can improve future social and educational outcomes, ultimately improving children's health and wellbeing as they grow and develop. 

"Early treatment can help improve child outcomes," Connell said. "Children who don't receive services until they reach school may have poorer outcomes, and they may require services for longer periods of time." 

Measuring developmental delays in Pennsylvania 

The researchers examined records from 31,913 infants and young children receiving Medicaid support in Pennsylvania between 2015 and 2017. The researchers then identified which children in the data had interactions with CWS due to a confirmed instance of neglect or abuse before their third birthday. 

CWS services were categorized in four levels: children who were on Medicaid but had no CWS involvement before turning three, children who experienced confirmed neglect or abuse but were not receiving services from CWS, children who received in-home services from CWS after experiencing neglect or abuse, and children who were placed in foster care. In this study, around one third of the children who had been abused or neglected received CWS services, according to Connell. Because all children in the sample were eligible for Medicaid, they all had comparable access to health care. 

In addition to rates of diagnoses, the team also examined rates of on-time medical well-visits and access to early intervention supports, including includes home visits and assessments that can lead to speech, physical or occupational therapy and other developmental support. 

"It can be hard to connect very young children to services," Connell said. "Families under stress sometimes face real barriers to getting help, but when support is offered early, it can make a tremendous difference. For infants and toddlers - who depend entirely on adults to recognize their needs - early outreach from doctors, caseworkers or childcare providers can help identify concerns and get families the resources they need long before school age." 

Faster identification and more services

In this study, the researchers discovered substantial differences in the identification of developmental delays among children based on their level of CWS involvement. From ages one to three, 32% of the children who had no CWS contact were identified as having a developmental delay. For children with CWS involvement but no services, the number rose to 36%. For children who received in-home services from CWS, the number rose to 45%. Finally, 63% - nearly two-thirds - of children placed in foster care before their third birthday were identified as having a developmental delay. 

Along with improved early identification of developmental delays, children were more likely to receive services to treat the delays as their level of CWS involvement increased, according to Connell. 

The researchers also found that children in foster care were likely to be diagnosed immediately after they were placed in foster care. Connell said this indicates that foster care likely led to identification of the delays, rather than being a cause of the delays. 

For the six months prior to their CWS involvement, children in the study with developmental delays were identified at a similar rate, according to Connell. CWS involvement was the inflection point where some children became more likely to be diagnosed and treated. 

The researchers noted that children in foster care were more likely to attend well-child visits with physicians, which accounted for some - but not all - of the increased level of diagnoses. 

"Overall, these data indicate that CWS, and especially the foster care system, are helping connect children to the services they need," Connell said. "This connection may be due to advocacy from CWS or foster providers or could be the result of changes in medical decision making when CWS is involved, but the positive outcome is that children are getting access to beneficial supports. Other aspects of our education, welfare and health care systems should look to the success of foster care so that we can connect more children with needed services at an early age." 

Ziyu Huang, doctoral candidate in human development and family studies at Penn State; Ezra Goldstein, assistant professor of public policy at Georgia Tech; and Sarah Font, professor of social work at Washington University in St. Louis, also contributed to this research. 

The Eunice Kennedy Shriver National Institute of Child Health and Human Development funded this research.