Northwest Center’s (NWC) Hospital-to-Home Systems Change (H2H SC) is on a mission to ensure that all families receive the support they need following discharge from the Neonatal Intensive Care Unit (NICU). In the United States, approximately one in ten infants experiences a NICU stay. Perinatal Mood and Anxiety Disorders (PMADs) are the most common complication of the perinatal period and caregivers of NICU infants face greater risk of experiencing emotional well-being challenges. Research shows that the likelihood of PMADs increases following a NICU stay and continues to rise with longer hospitalizations. At the same time, families experience significant disparities based on language, geography, socioeconomic status, and ethnicity, creating additional barriers during an already vulnerable period.

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For many families, a NICU hospitalization is only the beginning of their journey. One of the greatest challenges to their emotional well-being is the “service cliff” they face after discharge. Families transition from the 24-hour support in the NICU to solely managing caregiving responsibilities at home. While community-based services and supports exist, they are often fragmented, difficult to navigate, and poorly coordinated. As a result, the burden of care coordination falls on parents at a time when their mental health is already under significant strain. Delays in connecting families to Part C Early Intervention and other community-based services are common. Even when services are successfully established, providers frequently report feeling underprepared to address the complex interplay between caregiver mental health and infant development. These gaps in support contribute to increased caregiver stress and poorer family outcomes.

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The Hospital-to-Home Care Model was developed in response to these gaps in care. Designed by direct service providers and parents with lived experience, the model recognizes that caregiver emotional well-being and infant development are interconnected and cannot be addressed in isolation. The Care Model emphasizes rapid and timely access to services following discharge. It integrates perinatal mental health-attuned care with developmental support and seeks to reduce caregiver burden through support with care coordination. To improve equitable access to services, the model also promotes universal screening for family resource needs and caregiver mental health concerns.

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The foundation of H2H SC is a focus on caregiver mental health and the work is organized around three interconnected pillars. The first pillar is Hospitals, where the team partners with NICUs and healthcare systems to support streamlined referrals to home- and community-based services. The second pillar is Home, where the team builds the capacity of the workforce to use the Care Model through interdisciplinary trainings, communities of practice, and technical assistance focused on the needs of NICU families. The third pillar is Advocacy, which elevates the voices of families and providers to improve systems, reduce barriers to care, and promote equitable access to supports. H2H SC has trained more than 600 providers across Washington State and provides technical assistance to communities seeking to strengthen the transition from NICU to home- and community-based services. We estimate that this work has positively impacted more than 5,000 families.