Closing Early Intervention Service Gaps to Infants is Both Policy and Practice

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.

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.

[Read our report on service gaps to automatically eligible infants]

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.

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

We found that good policy is supported by effective implementation, and many examples where strong service delivery is improving the connections of families and infants with NICU stays to early intervention services they deserve. Hospitals can incorporate referral and enrollment into their discharge processes to ensure that families are connected to services–see recent research on embedding EI services in NICU, and a state law requiring referrals from NICU that just passed this summer. And with adequate support, early intervention programs can also create centralized enrollment platforms with modern health records that make it possible to “close the loop” on referral outcomes and provide visibility across early intervention and health care systems.

These are just a few examples of the work that is being done to serve automatically eligible infants as quickly as possible–there are likely many more.

Improving the integration of systems and processes that govern early intervention is more than just a logistical issue for these babies and their families. It facilitates access to a program that can dramatically improve quality of life. Early intervention is associated with lower levels of child maltreatment and can reduce states’ special education costs by helping children prepare for elementary school. Most importantly, early intervention can provide the strong, healthy start that every child deserves.