Stakeholder Perspectives on Service Gaps

For this initial discovery sprint research, we did not set out to engage directly with families for their perspectives on transitions of preterm and low birth weight infants from the neonatal intensive care unit (NICU) to home. For more extensive engagement in the future, trauma-informed protocols would be used to include family perspectives.

That said, the team did incidentally hear from families with personal NICU experience, as some of the subject-matter experts we spoke with have children who were low birth weight or preterm babies. These conversations reinforced findings from literature, online parenting groups, and others working in the field: Stays in the NICU are frequently lengthy and often traumatic. At the very least, they are an overwhelming moment in a family’s life.

What we learned:

• Birth can feel like an impractical time to enroll families in services. The Federal “Birth of a Child” Life Experience team created a Zero to 5 Journey Map tracing the steps of low-income mothers from pregnancy through early childhood, including various touchpoints where connection with supportive services might work well. The document points to a “birth-time haze” as a barrier to enrolling families in supportive programs. As their report states: “Birth is an overwhelming and impractical time to learn about and apply for benefits. Facts are easily forgotten and physical information is often misplaced.” This is critical to remember when planning service connections around childbirth and hospital discharge. Reducing the burden associated with applying for and enrolling in supportive programs could make birth a more practical time to connect families.
• Mental health challenges specific to NICU stays amplify the typical challenges of birth. The hospitalization of newborn infants compounds the typical stress and exhaustion many new parents experience. We heard from NICU practitioners that parents are wrestling with extremely difficult questions: “Will my child survive? Will they be ‘broken?’ How long will we be in this stressful, strange environment?” Additionally, families may face financial stress due to missed work, hospital bills, or both. It should not be surprising that 35 percent of mothers and 23 percent of fathers experience acute stress disorder in the days after hospital stays, with 15 percent and 8 percent experiencing ongoing stress disorders, respectively.¹

It is within this soup of exhaustion and emotion that parents must make decisions about next steps for their infant transitioning out of NICU care. Conversations and decisions about early intervention cannot and should not be avoided, even though the environment and timing are, as noted above, a challenge. Some aspects of the NICU birth experience, notably the length of stays and exposure to supportive therapies for infants, in fact make it an optimal time to expose, educate, and even enroll families in supportive services prior to discharge, including early intervention.

Many parents are not aware that early intervention is an important program available to them in the suite of early care and education services for young children. For parents who are not notified about automatic eligibility or enrollment in early intervention services, these children may be locked out of services unless a delay is noticed and their child is referred for evaluation based on the observation of a future clinician.

Parents who are informed about eligibility for services may still opt not to evaluate or enroll for a number of reasons:²

• Enrollment in early intervention can be confusing. The referral and enrollment process is different and more logistically complex than other programs that parents apply to directly, like Medicaid or the Supplemental Nutrition Assistance Program.
• There are many misconceptions and feelings of mistrust about early intervention services. Misconceptions occur when families believe that they are not eligible or that services are not compatible with their other care. For example, they may not realize that they can receive early intervention alongside home health services for medical needs, or home visiting for postpartum support (such as through the Maternal, Infant, and Early Childhood Home Visiting Program). Mistrust is a result of fears that interacting with services may trigger unintended consequences. Families may mistrust social workers and see home-based early intervention services as surveillance, or fear attracting the attention of the child welfare system by applying for public services.³
• Both pediatricians and families of infants with NICU stays sometimes opt for a “watch and wait” strategy. Families of infants with NICU stays have been through a lot, and some very low birth weight and low gestational age babies do not experience delays at all. According to a study on barriers to evaluation, some parents may choose to step back from services for a time, and initiate them later if possible delays are observed. They may also prefer to work with their child on their own before seeking early intervention.⁴ On the other hand, some families would prefer closer monitoring and expert assessment of their infants’ development, but are dissuaded by pediatricians who prefer to wait for signs of delay to appear, as one study focusing on rural infants and toddlers found.⁵
• Coordination of therapies can be complex and burdensome. It can feel like another job to coordinate regular therapies. The United States lags far behind other countries in access to paid family and medical leave programs that would help people attend to their prenatal health, potentially avoiding unsafe births to begin with, and to care for their children after birth or adoption. These insufficient leave policies (with a few important exceptions) become even more pronounced when families are contending with a complicated birth and long NICU stay. Some parents have to go back to work and do not have the bandwidth to manage what feels like “one more thing.” Even if they are not working, they might prioritize quiet time to bond as a family, caregiving for other family members, or other responsibilities.
• Social and economic factors like income impact family participation. Not all families will opt into early intervention when offered, and not all families are equally equipped to take advantage of the services. For example, one study found that for every $10,000 decrease in median family income, the odds of accessing adequate early intervention services decreased by 24 percent.⁶ Another study of early intervention access after NICU discharge in a Medicaid population identified multiple barriers for these families in particular: scheduling visits is challenging, transportation may be an issue when home services are not available, or they fear that early intervention services will incur out-of-pocket costs that they can’t afford.⁷ Mental and behavioral health issues like substance abuse disorder can also be a factor.

We interviewed key members of NICU teams to complement what we learned from the literature. The providers we spoke to were enthusiastic about the importance of connecting families of automatically eligible infants in NICU with early intervention services, and pointed both to good practices and challenges in making those connections.

• NICU stays can be difficult and lengthy, but they present an opportunity to build trust with families of automatically eligible infants. Many families experience a lot of waiting and other “downtime” during NICU stays that can be—and often is—leveraged to educate them about neonatal care and connect them to helpful resources like early intervention. This can be particularly powerful when families have developed good communication and high trust with staff.
• However, family availability to spend time with their preterm or low birth weight babies in NICU varies. The time families can commit to NICU visits will vary depending on transportation, distance from home, and work and family obligations.⁸ The availability of leave programs (paid or not) and job protection may also affect families’ ability to be bedside.⁹ Some families may go back to work immediately to bank their paid or unpaid leave or paychecks for when babies come home. One NICU staff member noted that some parents find work to be a welcome respite from the hospital environment. Another noted an influx of parents at the end of the work day arriving to spend time with their babies.
• Family exposure to early intervention during this time is critical. Preterm and low birthweight babies in NICU will begin receiving services to encourage their healthy growth and development as quickly as possible, and engaging families will help them support infant development at home. This engagement may not come directly from therapists, depending on schedules. Many NICU staff—particularly bedside nurses—are critical partners in transitioning caregiving back to the parents during the hospital stay. They can use that time to educate families about ongoing support for healthy development, including early intervention services.
• Consistent discharge procedures are a must. Interdisciplinary guidelines for NICU transition planning recommend assessing every family for early intervention services eligibility and then referring eligible families prior to discharge.¹⁰ While discharge procedures might be informed by widespread guidance, they can vary from place to place, and even well-designed discharge procedures have limitations. Procedures need to work for shifts across nights, weekends, holidays, and staffing changes. Medical social workers can provide excellent support to families as they prepare for discharge, including written material to support parent education and direct referrals to early intervention services. However, they do not work around the clock, so discharge procedures should be clear and transferable across disciplines.
• Even the most consistent procedures will still not work for everyone. Automatic referral and well-established discharge processes are important. But even with strong procedures in place, staff might miss opportunities to make referrals at discharge, and families might not have the wherewithal to act on them. In one study, 14 to 28 percent of automatically eligible babies who returned to the NICU for developmental clinic visits at four months still needed early intervention referral, even when they’d been seen by primary care physicians, signaling a missing touch point in pediatric care.¹¹
• Providers struggle to connect with all families, but service gaps are bigger for certain groups. Even though the health, social, and education systems involved in supporting these infants are highly interconnected, they lack coordination and cause frustrating administrative hurdles for families. Black families, families with low incomes, and non-English-speaking families have lower access to early intervention and high-risk infant follow-up programs following NICU stays.¹²
• Pediatricians are critical partners who may not be well integrated into automatic referral through eligible conditions. We did not conduct a 50-state scan of eligible condition lists, but the lists we did review were not always easy to find or written in plain language. Given the complexity of early intervention eligibility policy, it is unsurprising that pediatricians tend to rank their understanding of diagnostic criteria for early intervention lower than early intervention staff.¹³
• Better guidance for pediatricians on eligibility criteria and infant and family benefits of early intervention may help. Many pediatricians are enthusiastic partners in referral to early intervention, but sometimes they hesitate to refer. Lack of guidance on early intervention referral procedures likely contributes to pediatricians’ hesitation in referring families and reliance on a “watch and wait” approach.¹⁴ Pediatricians may delay referring when a child has delays in only one developmental domain rather than multiple, or when parents are hesitant about referral. Better guidance on the benefits of automatic referral for eligible infants—for both infants and their families—might help move the needle.
• Pediatricians and hospital staff may hesitate to refer families to early intervention when there are wait lists or delays getting services. Pediatricians and hospital staff with knowledge of program scarcity may not be willing to refer families to services they will have difficulty accessing because of provider shortages or long wait times.

• There’s “no wrong door” for referring families, but the doors need to be more accessible. States offer many different ways to refer children to early intervention state agencies, including phone, fax, email, and websites. Administrators note that this variety of avenues creates a “no wrong door” approach to increase referrals. However, barriers at these referral points can inhibit connections. A survey of state early intervention agency Part C coordinators found that nearly three-quarters (72 percent) of state referral forms were only available in English. Families accounted for 30 percent of those making the referrals, and six states reported families as the most common referral source, making the availability of forms in multiple commonly spoken languages a priority to reach wider networks. Most state referral forms (81 percent) were available as electronic documents and required downloading plus handwritten signatures. Most of these methods require several steps across multiple agencies, which increases the odds of human error (such as omitting information) that may slow down the process.¹⁵
• Good communication and interagency collaboration are important for successfully connecting families to early intervention. Information about children with delays and disabilities, as well as their families, is not well integrated between health and education data systems, which exchange little or no information. For example, there is a wide variation in the functionality and capabilities of early intervention referral forms.¹⁶ While electronic health record systems might note referral to early intervention services and other helpful follow-up appointments, many early intervention coordinators and agencies do not have access to those systems, and the referrals themselves don’t confer records access. This requires early intervention agencies to make separate records requests to hospitals and pediatrician offices when needed, slowing down the referral and evaluation process.¹⁷
• Referral requirements are confusing. Many pediatricians and early intervention staff report that they need more guidance as they are not clear on how to refer, what information to include, who is responsible for getting parental consent, and how to use state lists of approved conditions to determine whether to refer.¹⁸ This confusion leads to missing information, missed opportunities for referrals, and slower timelines from referral to enrollment.
• There is lack of clarity regarding services provided through a medical model versus services focused on education and social support like early intervention. Many preterm or low birth weight babies will need continued medical attention, and some may even need home or respite care. There is genuine confusion over who is best equipped to provide intervention services to very preterm babies. According to some of the experts we spoke with, serving this population may require specialized skills, and there may not be enough early intervention providers with sufficient experience providing this level of care. However, supporting parents and caregivers is also an important focus of early intervention. Early intervention or other supportive services, such as home visits, could be effective at supporting the emotional and mental health needs of parents while skilled nurses support the physical health and development of their babies. The choice between a medical or family-centered model is an unresolved source of tension among dedicated people who all want good things for NICU graduates and their families, even when they are clear-eyed about the advantages and disadvantages of multiple approaches.