Led by neonatologists and researchers at four NICUs in Chicago, Project INITIATE examined barriers and gateways to Early Intervention (EI) access for infants who are automatically eligible for services due to medical conditions. Following the research study, Start Early convened a policy advisory body in June 2023 to translate the research findings into cross-systems policy recommendations to improve timely access to EI for infants exiting the NICU.
Bridging the Gap: Improving Early Intervention Access for NICU Families
Findings and recommendations from Project INITIATE to improve timely access to Early Intervention (EI) services for infants discharged from Neonatal Intensive Care Units (NICUs), and strategies to support all EI-eligible children.
Key Findings
Key findings and recommendations include:
- There are significant barriers to timely access to EI, with 67% of families still waiting for an evaluation by their 3- to 5- month NICU follow-up visit.
- Despite a robust process for identifying and enrolling eligible children and families, EI services remain significantly underutilized both in Illinois and nationwide. Fewer than 4% of infants and toddlers receive EI services, while research suggests that 13%-20% of children from birth to age three may have developmental delays or disabilities that would make them eligible.
- Underutilization is especially stark among infants under one year of age, with just over 1% receiving services both nationally and in Illinois.
- The main recommendation from the policy advisory committee is to co-locate EI service coordination directly in NICUs to ensure smoother, earlier access for all eligible infants. This would enable families to be introduced to EI, and for IFSPs to be developed before hospital discharge. This model offers a pathway toward reducing barriers, improving follow-through, and ensuring more infants receive the care they need during the most critical period of development.
We encourage early childhood advocates, public sector leaders, and EI providers to consider how these findings and recommendations might apply to your state’s EI system. To share your innovative practices, ask questions, and request support, please reach out to the Start Early Consulting team at Consulting@StartEarly.org.
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Funders
The development of the policy recommendations and this report was not specifically funded. The research study that the report and recommendations are based on, however, was funded by the Illinois Council on Developmental Disabilities and Patrick M. Magoon Institute for Healthy Communities.
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