Brief: Understanding service gaps in early intervention for NICU babies
National
April 2025 - December 2025
Why This Matters for Families
Infants in the neonatal intensive care unit (NICU) are some of the tiniest, most fragile people on the planet—and their parents and care teams are some of the toughest. Often born premature, low birth weight, or with other significant medical challenges, babies in the NICU spend their first days, weeks, or even months of life cared for around the clock by dedicated health care teams in NICUs. Meanwhile, their parents wait anxiously for them to gain weight and strength so they can come home and be together as a family. All this happens as they may be balancing jobs, other children, and their own recovery from birth. Being the parent of a newborn is a challenge no matter what, but when babies need extra help to grow and thrive, the challenges intensify. With a growing number of very premature and low birthweight babies born, these families’ journeys are grueling, inspiring, and all too common.
To help support a successful transition from hospital to home, physical, speech, and occupational therapies are initiated as soon as possible. These therapies help ensure that babies will be able to eat, sleep, and move in ways that will support their continued healthy development. Once infants have “graduated” from NICU to home, they and their families are often eligible to continue therapies through early intervention services under IDEA Part C, a federal program that has supported the healthy development of infants and toddlers from birth to three along with their families since 1986.
The purpose of early intervention is exactly what it sounds like: to intervene early to connect infants, toddlers, and their families with appropriate developmental supports before school entry. Early intervention helps infants and toddlers eat, sleep, move, speak, and play better, creating a strong foundation for the “free and appropriate public education” that IDEA guarantees. Early intervention uses a family-centered approach that takes into consideration a family’s environment, routines, and preferences, and integrates the family into services for children. When families can access the program, the impacts can be profound: Early intervention helps strengthen cognitive, motor, and language skills, reduces the likelihood of childhood maltreatment, and can lower education costs through reduced need for special education.
Implementation Challenge
These connections, when handled smoothly, are a lifeline to these infants and families, but there are gaps in handoffs that prevent them from getting the services that can help them. Early intervention services are underfunded and in high demand. The program is designed to identify and serve every child who is eligible for services, but falls short of reaching many children. This is true across the birth-to-three population, but infants in particular aren’t well served by early intervention because the system typically only kicks in when they fall behind.
Good policy can help. In 35 states, babies who are low birth weight, preterm, or both are automatically eligible for early intervention services. But the eligibility rules vary from place to place. A baby born at 2.64 pounds (1200 grams) will qualify for early intervention services in one state, but not over the border in another state where the threshold is 2.2 pounds (999 grams). Some states do not have a specific policy for low birth weight or preterm babies at all.
Even in places where these babies are automatically eligible, families can still have difficulties getting connected to services. This is troubling, as automatic eligibility policies for low birth weight and preterm babies are intended to rapidly connect infants at high risk of disability or delay with services that can help them thrive, at a time when they and their families could use help the most.
Our Approach
Early intervention services can help infants with NICU stays continue to develop and thrive once they transition home. Automatic eligibility policies for low birth weight and preterm infants can strengthen the connection to early intervention services, but these connections can be inconsistent, and as a result, babies and families may be missing out on critical supports when they need them the most. New America’s New Practice Lab and Early and Elementary Education Program conducted an eight week "discovery sprint" to understand the challenges families, doctors, and administrators face when helping families connect to early intervention services from NICU.
We wanted to know more about the connection challenges for automatically eligible infants and their families. What does service connection look like from the perspectives of NICU staff, early interventionists, and families? What can we learn in a short amount of time about the breadth of the problem, and possible fixes? This report analyzes enrollment challenges from the practitioner, administrator, and family perspectives, which includes things like:
Challenges connecting with families in the “birth time haze” and in the often traumatic context of the NICU experience
Confusion about EI eligibility and enrollment, and distrust of what EI enrollment means for families
Difficulties integrating health care and early intervention systems to support more seamless service delivery for families, health care providers, and early intervention teams
Complexity of bringing together siloed and insufficient funding sources to support an under resourced program
OBJECTIVES
Understand how widespread the disconnect between automatically eligible infants and early intervention services is.
WHAT WE DID
We studied eligibility policies across all fifty states and the District of Columbia to better understand the relationship between policy context and the number of infants served. In general, infants under the age of one are underserved compared to one and two year olds. We found that policies designed to serve more children do not necessarily work well, absent thoughtful implementation.
OBJECTIVES
Learn more about procedures, policies, and factors across NICU, pediatrician offices, and early intervention providers that can impact service connection to automatically eligible infants.
WHAT WE DID
We spoke with experts in the fields of neonatology, early intervention, perinatal health, and early childhood policy to better understand the operating environments in which these connections are made. We reviewed relevant literature on the barriers to connecting families in this population, including socioeconomic factors impacting our North Star population.
OBJECTIVES
Identify promising practices that can help strengthen the connections between automatically eligible babies and early intervention services.
WHAT WE DID
Across our interviews and readings, we looked for bright spots to elevate for states looking to improve early intervention connections to automatically eligible infants.
What We Learned
Strong policies like automatic eligibility are only as good as the ability to implement them, and families are being underserved without systems in place to help guide them through EI enrollment.
As we looked at opportunities for improvement, four themes emerged:
Cultural fixes: Early intervention is driven by identification mandates known as “child find,” but the process should better reflect the lived reality of parents and providers — the real targets of “child find” efforts. Education about early intervention can start in the NICU, and continue in pediatricians offices.
Technological fixes: Early intervention is multidisciplinary by design, but, there is little technological infrastructure to help team members work together. Electronic referrals and intake can help close the loops between different players across the system.
Procedural fixes: Because states have broad flexibility to implement the EI programs, families’ experiences with service connections can vary greatly from hospital to hospital, and could be improved by more consistent discharge procedures.
Structural fixes: Program requirements for early intervention are intense, funding streams are complex, and the system is chronically underfunded relative to what it is expected to deliver. States early intervention programs should build relationships with Medicaid offices and maximize all funding sources to make sure families are served.
To expand access to high-quality child care for low-income families, the child care subsidy program must operate more like the private market in which it exists. Paying providers prospectively and based on enrollment is a crucial step; it supports providers, expands care options for families, and strengthens the child care system as a whole. Sustained commitment from states — through thoughtful implementation, provider engagement, and technical investment — will determine the long-term success of these reforms.
Throughout 2025 and into 2026, we will continue to transfer lessons about implementing prospective and enrollment-based practices from states that have already implemented them to new places. Our team has already connected with Missouri, and helped to review their draft procedures and offered suggested language revisions and considerations. We aim to engage with a broad group of states representing diverse political and operational environments as they implement these changes. We welcome outreach from states in early, middle, or late stage implementation work on prospective payments to understand what is working (or not) for state administrators, for providers, for families, and what is the impact on the number of available spots and participating children.
Read our report on service gaps to automatically eligible infants
Next Steps
Having comprehensively documented the disconnect problem between NICU and early intervention services, the New Practice Lab is considering several potential steps forward, including:
Implementation work: Illinois specifically has passed a new law mandating automatic referral of families with babies in NICU to early intervention services, and Colorado added NICU leave to its FAMLI PFML program through new legislation, and we have engaged both teams to assess interest in an implementation sprint.
Developing relationships: In addition to proactive outreach to states with NICU programs, we have met with aligned researchers like the Youth Policy Lab and Boston Medical Center, connected with past and present state Part C coordinators, and are coordinating with Office of Special Education Program alum to further collaborate and share our findings. We are exploring potential conference panels, a webinar aimed at helping states streamline enrollment of automatically eligible infants and toddlers into services.
Read More
Protecting Infant Health: Closing Early Intervention Service Gaps | Our joint report on early intervention services with the Early and Elementary Education Policy Team
Closing Early Intervention Service Gaps to Infants is Both Policy and Practice
Coverage of the report in the Hechinger Report and the Atlanta Journal Constitution
