Conclusion

Even though our team is not new to the early childhood space, we were still surprised to learn about the complexity and challenges in delivering early intervention services, both to low birth weight and preterm babies who might be automatically eligible and more broadly across the population. Early intervention is a critical support for the infants, toddlers, and families who need its services, but successful implementation is hampered by procedural, cultural, technological, and structural barriers. On the structural point, it is critical to highlight the extent to which the Individuals with Disabilities Education Act (IDEA) Part C funding has lagged over time in relation to the number of children served by the program. IDEA Part C has multiple legally mandated components at the federal level, one of which is for IDEA Part C funds to serve as the “payor of last resort.” States that want to serve more children—including infants—do so on their own dime and largely at their own risk. Each state must weigh the benefits of reaching more children against the cost of providing timely service as required by law.

In general, the United States operates in a scarcity mindset when it comes to serving our youngest children and their families. This country chronically underspends on early care and education compared to its Organization for Economic Cooperation and Development (OCED) counterparts.¹ This scarcity too often results in rationing of care: difficult eligibility processes, service delays, and wait lists for families looking for support while raising young children. State administrators face difficult decisions when considering who to prioritize, and in many cases, they have insufficient evidence for decision-making. The questions over the appropriate dosage, duration, and type of services that will benefit developing children are far from settled, and this report does not provide a definitive answer to those questions.²

What is very clear is that states seeking to connect families of infants with neonatal intensive care unit (NICU) stays to early intervention services have plenty of opportunities to do so, largely through the cultural, procedural, structural, and technological improvements surfaced in this report. In many cases, solutions focus on bridging the gaps between what is health care and home care: in other words, strengthening the connection between the highly clinical work of resuscitating fragile infants and the family-centered, ongoing developmental support they will need at home to help them develop and thrive.

The challenge of integrating these two types of care is not unique to early intervention—transitions from hospital to home are often challenging.³ And within the early intervention space, the disconnect is not isolated to NICU transitions. Indeed, better integration of developmental screenings, early intervention referrals, consent forms, service plans and records, and pediatric electronic health records would be likely helpful to all children and their families, not just automatically eligible infants, and not even just children who are currently enrolled in services. Building additional capabilities into the existing system will help programs like early intervention operate more efficiently and effectively if and when they are sufficiently funded to fully meet the needs of children and families.