Promising Practices

The underenrollment of infants in early intervention is not a new or understudied problem. The experts we interviewed were aware of gaps in service, and literature confirmed the gap’s persistence over time despite the deficiencies being acknowledged. A 2016 study used qualitative research with families and providers in two states to better understand barriers to the delivery of early intervention to preterm infants.¹ The authors categorized four types of gaps to produce a strong resource offering 22 recommendations for innovation in early intervention systems using a Chronic Care Model framework organized by framework component, estimated timeframe for implementation, and responsible stakeholder. Nearly a decade later, the gaps still exist, as do widespread opportunities to implement these recommendations.

Using expert interviews and recent research, we present an updated list organized by type of fix: procedural, cultural, technical, and structural.

A major challenge to smoothing enrollment of infants from neonatal intensive care unit (NICU) into early intervention services is the wide variation between policies and procedures from state to state, county to county, and hospital to hospital. While care protocols like high-risk infant follow-up have been widely adopted, the practice itself can be hard to access.² Despite efforts to tackle this, programs can still be underenrolled.³ But even amid the challenges of connecting families to services like high-risk infant follow-up and early intervention, there are promising practices to improve referrals and participation.

• Leverage the “captive audience” nature of NICU, especially through bedside nursing. One study identified patient education strategies as one of the most effective tools for encouraging attendance at follow-up appointments in the developmental clinic: In an anonymous survey of parents who attended the first visit, 95 percent indicated bedside education was the most important factor in clinic attendance.⁴ Most infants receive therapy while in the NICU, primarily speech therapy to help them learn to feed, but occupational and physical therapists may also provide services. These care team members can also help prepare parents for continuation of services through early intervention.
• Families appreciate a warm hand off to services. In order to help families feel comfortable in the transition from the hospital to community-based early intervention services, NICU staff should provide the family with a warm hand off that includes a personal connection. Early intervention providers can visit NICUs in person if possible by attending developmental clinics, or they can attend multidisciplinary or discharge meetings remotely if needed.⁵ In Project Initiate, hospital staff scheduled a virtual orientation meeting between families and early intervention prior to discharge. These warm hand offs helped “establish early rapport, clarify expectations, and contributed to more timely initiation of services after discharge.”⁶
• Be open to adopting new models for connection and service. A recent Start Early report updating some of the work first shared through Project Initiate summarizes a model where early intervention coordinators are colocated with NICUs, allowing families to go home with not just a referral but an Individualized Family Services Plan (IFSP) in hand, having initiated services during their stay. The model also includes closer hospital–early intervention coordination for information sharing, including with local early intervention coordination offices to facilitate continuity of services once infants go home.
• Integrate early intervention into discharge planning. A 2021 study of Medicaid users flagged integration of early intervention into discharge planning as a helpful practice, and a 2022 study affirmed it: “Assess every family for Part C of Individuals with Disabilities Education Act (IDEA) eligibility and make a referral to qualifying families prior to discharge.”⁷ Making early intervention referrals far in advance of discharge may start the clock too early on a 45-day timeline to service; this may be unhelpful to early intervention coordinators. Regardless, making sure early intervention is incorporated into a standard discharge checklist helps ensure that the connection is made, no matter who is managing the process on weekends and holidays.
• Family navigation and advocacy from care providers may be helpful. One NICU provider suggested that peer support from families who have already navigated early intervention services might be helpful for hesitant families. Peer navigation has shown promise in other perinatal and maternal health contexts, and one study found that providing peer navigation to families resulted in a 10 percent increase in early intervention participation.⁸ In a different study, families noted that they sometimes got better service from early intervention offices when a hospitalist called on their behalf than when they called directly.⁹ A “medical–legal” partnership connecting patients and families with legal support in medical settings helped families work through checklists and “unstick” the process.¹⁰
• Make lists of eligible conditions easy to understand and find. A 2020 study of state lists of qualifying conditions noted that “the wide heterogeneity in the number and type of diagnostic conditions listed across states” could contribute to imbalances in which children can access early intervention services. Providing ready access to lists of conditions is a simple step to facilitate access.¹¹
• Incorporate early intervention eligibility criteria into a tool or flowchart for providers to easily determine whether and how children qualify for services. This recommendation is one of the 22 recommendations identified in the 2016 paper cited above.¹² The chart needn’t be paper, nor does it need to be restricted to early intervention, as there are many supportive programs that can benefit NICU families. Such screeners exist for early care and education, like South Carolina’s First 5 SC, and for tax credits and public benefits programs, like MyFriendBen.
• Create universal referral platforms. Training on referral and eligibility determination processes can help pediatricians and early intervention staff more efficiently refer and collaborate. A statewide, web-based referral form (like Michigan’s) for pediatricians, families, and other referrers can list centralized contact information alongside referral policies and protocols to minimize confusion about how to refer and what information to include. Including parental consent information compliant with HIPAA (the Health Insurance Portability and Accountability Act) and FERPA (the Family Educational Rights and Privacy Act) can expedite referral processes and avoid confusion about who is responsible for obtaining consent.
• NICU providers should share referrals with primary care physicians. One NICU set a goal to improve attendance at their high-risk developmental clinic from 60 to 80 percent, and one of the methods they used was formatting a standard referral letter to infants’ primary care physicians.¹³ This relatively low-lift task helped smooth the transition of care from NICU to pediatrician and could be adopted for early intervention referrals as well. This step could also help pediatricians whose self-reported understanding of qualifying conditions is lower than early intervention staff.¹⁴
• Written materials are still useful “takeaways” for family learning. Educational materials staff give to families at discharge should be available in various languages and accessible in paper and digital form.¹⁵ Importantly, materials should make it clear that parents can self-refer to early intervention if they are concerned about their infant’s development.
• Adopting a multipronged approach may be necessary. Gaps in early intervention services to preterm babies and other infants in the NICU with other eligible conditions or diagnoses are not driven by one particular thing, nor will there be a magic bullet solution. One program tackled gaps in neurodevelopmental services to NICU graduates by focusing on three drivers of success in improving uptake: consistent communication, standardized processes, and family integration.¹⁶

Programs created to support families discharged from the NICU also show promise for increasing early intervention connections:

• The Baby Bridge program in St. Louis (also known as NICU Transition Services at Washington University Occupational Therapy) provides continuity of care between discharge and connection to community-based therapy services like early intervention. A Baby Bridge therapist builds a relationship with parents while in the NICU that continues after discharge. Its pilot study showed that the program connected more families, more quickly, to early therapy services such as early intervention.¹⁷
• The Hospital-to-Home program in the Seattle area creates a focus area within the state early intervention program specifically for families exiting the NICU. Babies are often evaluated for early intervention and enrolled two weeks after NICU discharge. Specialists in the program, including family resource coordinators and physical, speech, and occupational therapists, receive training in working with preterm infants and in perinatal mood disorders. The program’s systems change team, funded privately and publicly, provides three-day training to early interventionists across the state in order to replicate the model, since many therapists do not have backgrounds working with preterm babies.
• Arizona’s Smooth Way Home program aims to strengthen transitions from the NICU to home in part by increasing early intervention connection prior to or just after NICU discharge. A statewide community taskforce with members from state agencies, early intervention services, parent advocacy groups, and NICU staff inform the program.
• Some states like Washington have early intervention connection programs specifically to address neonatal abstinence syndrome among infants and substance use disorder among adults. (Neonatal abstinence syndrome impacts infants directly, while parental substance use disorder is a high-risk condition for infants.)
• Nebraska has been working on this area since 2000. They provide funding for a program called Developmental TIPS (Tracking Infant Progress Statewide). This program ensures developmental screening (with parental consent) for infants who were in the NICU for at least 72 hours. There is criteria for direct referrals to early intervention; otherwise, the infants go through periodic screening and are then referred as needed.

Some barriers to early intervention enrollment are cultural in nature, and solutions may be driven by focusing on staff training, patient education, and culturally competent care.

• Families need responsive, human-centered assistance navigating decisions about early intervention. Many families exiting NICU are eager to initiate early intervention, but others hesitate. When family hesitation is due to a preference, those preferences can be respected while relationships with providers are kept warm or personally engaged. Parenting is a nonstop series of decisions, some of them easier than others. To support their choices, families need high-quality information in both print and electronic formats that is written in plain language (and in languages other than English). They may also need easy on-ramps to services should they later decide to opt in. When their hesitation stems from specific constraints, those constraints should be mitigated with available wraparound supports such as transportation assistance and interpretation when possible. While connection to early intervention services can be initiated in NICU for automatically eligible babies, these stays should not be the final touchpoint for families who are hesitant, or who could use more support connecting with services.
• Bridge language and cultural barriers with families. More multilingual NICU and early intervention staff would improve communication between families and providers who often rely on limited interpretation services and technology such as iPads.
• Reassure families that early intervention services are support, not surveillance. Literature and interviewees alike pointed out families’ worries that early intervention is synonymous with child protective or immigration services. Hesitant families might benefit from a connection with families within their own communities who can explain what to expect from early intervention. They could also meet early intervention staff in person or remotely in advance of enrollment.
• Strengthen wraparound services for hard-to-reach families. NICU discharge guidelines published in the Journal of Perinatology recommend direct referral to early intervention and a comprehensive home and family need assessment to understand the family’s readiness to assume full-time care for a medically complex infant.¹⁸ This assessment can include the family’s transportation options, access to food, and financial stability. Early intervention is just one of many benefit programs that low-income families may be eligible for that will support the development of their child.
• Benefit screeners may help guide the process of connecting families with supports, and providers can get creative. Some states have adopted eligibility screeners that will help families understand what is available to them or assist a social worker who is walking them through options. In other states, understanding eligibility will be a more fragmented experience, and hospital staff create physical binders of reference materials for families. In either case, access to major state and federal programs can be augmented with information about other supports such as food pantries, clothing swaps, and other local resources. One health provider we spoke with hosted a baby closet of supplies themselves.
• Try to meet families where they are. Families of NICU babies are not a monolith. Depending on their work schedules, overall family needs, physical and mental health, home environment, and access to transportation, some families prefer to receive services at home, some will prefer to go to a clinical environment, and others will prefer telehealth. While the latter may not be the ideal mode of delivery, it is better than a family refusing services because the delivery model doesn’t work for them.
• Close the gap between medical models of follow-up care and family-centered early intervention services. Transition program staff cited the need to increase buy-in from some NICU staff into the benefits of early intervention. Developmental clinics mandated by Level III and IV NICU are valuable assets in infant follow-up care, but they may focus more on medical aspects of infant development and are not a substitute for ongoing therapeutic support. Staff noted that focusing on early intervention’s emphasis on perinatal mental health and family-based social and emotional support helps create hospital interest, since those are services that are not always provided by hospital specialists. One study noted that “high-risk infant follow-up, like most post-discharge health services, has some shortcomings, including: unclear goals; inadequate support for infants, parents, and families; fragmented service provisions; poor coordination among providers; and an artificially foreshortened time horizon.”¹⁹ This suggests the need for a new model for assessment of goals and outcomes based on touchpoints rather than medicalized approaches. This aligns with other efforts to map services to specific family experiences.

States have employed a variety of technological strategies for strengthening the connections from NICU to early intervention services.

Connecting Health Care with Early Intervention

• Raise the standards for electronic health records (EHR). Connecting health care and early intervention records can significantly speed up the referral and evaluation process. Early intervention coordinators noted the importance of this capability, yet EHR systems may not sufficiently support the healthy development of preterm infants if they do not include corrected age or developmental tracking features like the inclusion of video recordings of preterm infant movements.²⁰ And while state early intervention coordinators expressed interest in direct linkage of referrals to EHR systems, only 8 percent reported having that capability in a 2022 study.²¹
• Leverage EHR capabilities where possible. Electronic health records can prompt providers like pediatricians to ask families with babies who should qualify for early intervention if they have been connected yet, and if not, whether they would like to be referred. Yet EHR systems are not a solution for every problem, and providers can experience “nudge fatigue” from overreliance on them for reminders and prompts. Adding new features to already complex systems should be carefully considered. One provider we spoke with pointed out that “nudge fatigue” is a particular problem when providers are prompted to do things where they have no particular expertise or control, and when the action is repetitive or feels pointless. Involving them in the design of such nudges may help avoid that fatigue and align solutions to the actual problems they experience in their practices. One state’s city-based referrals were configured to connect all city hospitals’ electronic medical records with early intervention programs. It was not a small undertaking, as permissions had to be navigated with each participating hospital. However, configuring these systems up front reduces burden for NICU and early intervention staff in the long run. Early intervention programs do not have to wait for medical records from the NICU and can quickly access medical histories, easing the burden on families who would otherwise have to coordinate records transfers and retell medical history information to multiple providers.
• Implement electronic referral and centralized enrollment when possible. Integrating screening, consent, and referral forms in several languages into electronic health records helped NYC Health + Hospitals increase general referrals to early intervention by 30 percent and reduce the average age of enrollment by six months. Another state offers e-referrals as one of five referral avenues. The e-referral option shares relevant information from an infant’s medical record from the NICU directly with the early intervention program’s Salesforce system and increases the visibility of an infant’s status in the referral process.
• Loop eligibility criteria into well-baby visits so pediatricians can focus on parent education. Automating or integrating some of the complex program requirements into prescreening tools or electronic health records could help pediatricians focus their time on educating families about what early intervention services could do for their children, rather than wrestling with diagnostic criteria. Programs like StreetCred are designed to better connect children and families with financial coaching and a suite of services that can help support child wellness and healthy development, including tax preparation, paid family and medical leave, and supports like the Women and Infants, and Children (WIC) program and the Supplemental Nutrition Assistance Program (SNAP). Children in families that are eligible for services like SNAP and WIC may also be at higher risk of developing a delay, particularly in households experiencing poverty.²² Integrating developmental resources into primary care along with financial support helps address multiple household needs. Since infants typically have seven or more primary care visits in the first year of life, services like this would provide regular touchpoints with helpful services for families regardless of NICU involvement.

Connecting Family with Early Intervention

• Use smartphones to reach families. Family email, text message, and smartphone access have been associated with increased enrollment in early intervention programs following NICU discharge.²³ For general identification of infants and toddlers eligible for early intervention, the Text4Baby program sent developmental screening questions to mothers with low incomes via text message and sent follow-up texts with health resources.²⁴ A study of this initiative found high acceptability and usability of this intervention.²⁵ Los Angeles successfully used a call center to connect families of toddlers with early care and education coordination, including developmental services, increasing both referral and enrollment. Though the intervention was limited to children over 12 months, it could be piloted with younger babies as well.²⁶
• Other ehealth technology options, such as apps and social media, can support families. Focus groups of an early intervention referral and family engagement app found that families found it useful to have an app provide clear communication that explained the fundamentals of services, let them give feedback on their experience, and helped them track their progress through the system.²⁷ While “low-touch” approaches like this may seem like budget-friendly options, they require ongoing commitment and technical upkeep to remain usable and compatible with a range of devices and systems.
• Offer telehealth as an option (but not the only option). The COVID-19 pandemic led states to use telehealth for administering early intervention services.²⁸ State programs still use telehealth to deliver services to some families in rural areas. One program administrator noted that while in her experience most families prefer home-based service delivery, others prefer telehealth for a multitude of reasons. Though guidance often recommends home-based service delivery, this may not always be culturally responsive, and it is important to respond to family preferences that may evolve over time.

Early intervention was established by a federal law, Part C of the Individuals with Disabilities Education Act (IDEA), but is largely subject to implementation differences from state to state. IDEA Part C is unlikely to be amended to solidify local NICU procedures—it does not even establish a consistent list of qualifying conditions across states. That said, federal and state legislation has been introduced to improve the NICU experience for families and to better connect NICU infants to services through discharge planning.

Legislative Approaches to Smooth Family Experience

• Support paid family and medical leave at the state level. Colorado became the first state to approve additional paid family and medical leave to support families with infants in NICU. Starting in 2026, 12 additional weeks of paid family leave will augment Colorado’s existing Family and Medical Leave Insurance (FAMLI) program to support these infants and their families. This is an excellent benefit for NICU families in general, and it also provides another touchpoint for cross-benefit referral or enrollment in other services like early intervention. If families are applying for paid leave to support their families during NICU stays, they may also benefit from referral to other supportive services at that time. In Illinois, a bill introduced by State Senator Bill Cunningham extends the amount of unpaid but job-protected leave the parents of infants in NICU can take to spend time with their babies. Under this measure, employees of companies with 16 or more workers will be eligible for either 10 or 20 days of NICU-related leave depending on the size of their companies. Families will likely need much more time, and paid leave is optimal, but it is a small yet meaningful step in the right direction.
• Improve NICU discharge procedures with early intervention information and connections. Another Illinois bill, introduced by State Representative Janet Yang Rohr, herself a NICU parent, stipulates that early intervention education and written referrals for eligible infants be included in hospital discharge of infants from NICU. Signed into law in August, this bill aims to create more consistency in early intervention referrals at NICU discharge in the state of Illinois.
• Advance a “NICU Bill of Rights” in Congress. Representatives Erin Houchin and Morgan McGarvey introduced a resolution expressing support for a “NICU Bill of Rights” that aims to promote family-centered care, strengthen informed consent, support mental health for families, and improve discharge planning. While supportive programs like early intervention and paid family and medical leave are not explicitly mentioned, the text does call for family-inclusive policies and comprehensive discharge planning.

Systems Thinking to Deliver Services More Efficiently

The uncomfortable truth remains that even in a best-case scenario where all procedural, cultural, and tech fixes are implemented, enrolled families would still run into a wall of provider and funding scarcity. The Government Accountability Office reported that early intervention state coordinators consistently identified staff shortages and program capacity as their biggest challenge, and states that open up eligibility run the risk of rationing care to children who are already being served.²⁹ Still, ignoring the need won’t help.

The increasing number of high-risk pregnancies, preterm births, and improving survival rates of very preterm infants will mean higher demand for early intervention services for infants at risk of delays and toddlers who are experiencing them.³⁰ Underinvestment in these services will compound service gaps over time. But the current federal and state budget environments across early childhood programs are not conducive to expanding services, despite the widespread bipartisan demand among families for better support. States opting for a systems-thinking approach—for example, orienting supports around the experience of having or raising a child rather than around a particular program or problem—can leverage other federal programs supporting maternal and child health to maximize benefits to families with current capacity.³¹

• Pursue better coordination of early childhood programs to create additional family touchpoints for early intervention. For example, Maternal, Infant, and Early Childhood Home-Visiting (MIECHV) programs, including Nurse-Family Partnership, provide services to many families eligible or enrolled in early intervention. Yet in 2016, only one quarter of states reported enrollment coordination between MIECHV and early intervention programs.³² For instance, in one state, fewer than half of program participants discussed early intervention with home visiting staff, about one quarter were referred, and only 10 percent of those referred connected to early intervention services.³³ Strengthening referral and enrollment practices in these related community-based programs could efficiently increase early intervention connections.
• Leverage authority built into the early intervention system to explore partnerships. Part C is collaborative by design and lends itself to interagency work. According to the Early Childhood Technical Assistance Center (ECTA), “Lead agency staff are often asked to participate in many state-level collaborative activities designed to enhance the statewide system of services for all young children and families. The participation of staff in these collaborative efforts is extremely important.” ECTA notes that section 34 CFR §303.605 “specifically mentions collaboration” with the State Advisory Council on Early Education and Care and MIECHV programs.³⁴
• Look for examples where program coordination has proven results. Home visiting programs such as Help Me Grow South Carolina have successfully integrated the federal “Learn the Signs. Act Early.” developmental monitoring program and could use that integration to strengthen referral and enrollment to early intervention. In another study, participants in Massachusetts’ Welcome Family home visiting program had greater odds of receiving IFSPs relative to the comparison group.³⁵
• Coordinate with state-based perinatal quality collaboratives (SPQCs). These organizations work to improve maternal and newborn care and may be avenues to address connection of infants to early intervention in the future. According to a 2017 study, “While each SPQC uses approaches suited to its own context, several themes are common to the goals of all SPQCs, including developing obstetric and neonatal partnerships; including families as partners; striving for participation by all providers; utilizing rigorous quality improvement science; maintaining close partnerships with public health departments; and seeking population-level improvements in health outcomes.”³⁶ These SPQCs have also coordinated in cross-state collaborations to maximize their impact across broader regions.
• Leverage improved implementation of Medicaid’s pediatric benefit, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) for children. Of the 540,000 children currently receiving early intervention services, about half are also enrolled in Medicaid. Medicaid covers comprehensive screening, testing, and any follow-up treatment services for enrolled children. Using EPSDT to its full potential may help shore up additional resources to help identify children for early intervention services, helping to reduce some of the logistical challenges of Child Find efforts. If states ensure all medically necessary early intervention services are also reimbursed by Medicaid for enrolled children, that could free up additional federal or state resources to strengthen the screening and referral systems. States like Washington are working to ensure all early intervention providers are recognized by Medicaid plans, for example. The Bipartisan Safer Communities Act of 2022 requires the Centers for Medicare and Medicaid Services (CMS) to more actively monitor state implementation of EPSDT, resulting, to date, in updated CMS guidance, including a section on children with specialized needs.
• Provide federal guidance to states that clarifies which babies are included in automatic eligibility criteria. Currently each state chooses among automatically eligible conditions, leaving high variability among states and causing confusion about which conditions are included.