This past year, AcademyHealth worked in collaboration with Family Voices and Econometrica to develop a research agenda aimed at improving the mental health and overall well-being of children and youth with special health care needs (CYSHCN) through school-based services. These are children with chronic physical, developmental, behavioral, or emotional conditions who require more health and related services than their peers. Nearly 1 in 5 children in the U.S. fall into this category, meaning this work has implications for millions of families nationwide.
Throughout this project year, we developed key resources to help inform research, policy, and practice:
- Environmental Scan: A comprehensive review of the existing landscape of mental health services for CYSHCN with emotional and behavioral needs.
- Plain Language Summary: A clear and accessible overview of the Environmental Scan.
- Research Agenda: A roadmap for advancing evidence to improve mental health outcomes and the systems of care for these children and youth.
- Agenda Summary Brief: An overview of the agenda that features the top five research questions for each research domain and an abbreviated discussion section.
- Framing Resource: A resource that translates the Youth and Family Engagement priorities from the research agenda into accessible, action-oriented language.
Why This Work Matters
Despite growing awareness of the mental health needs of children and youth, CYSHCN and their families continue to face significant challenges. The environmental scan highlights how CYSHCN with emotional and behavioral needs experience fragmented care coordination and inconsistent access to school-based supports, resulting in higher rates of unmet mental health needs.
Another critical problem identified through the scan is the lack of a universal definition for CYSHCN with emotional and behavioral needs across health and education systems. Without a consistent definition, states and districts vary widely in their ability to identify and comprehensively care for these students. The scan identified five components of a working definition for this population which include: age range, physical conditions, emotional/behavioral conditions, care and service needs, and mental health care use. This working definition could be used as a starting point to create a more specific definition that bridges education and health language silos, and therefore more wholistically unites the eligibility requirements and services that children might need.
Reflections on the Research Agenda
Patient-centered outcomes are central to the research agenda, marking a significant shift away from traditional models which prioritize more normative and prescribed outcomes. For example, mental and behavioral health fields have historically been driven by pathology and symptom reduction, often overlooking patients’ lived experiences and personal contexts. The shift in this research agenda places greater agency into the hands of students and families, recognizing their experiences as essential to transforming systems of care and shaping the development of supports that truly reflect their needs. Therefore, research pursued from this agenda will be more aligned to address the challenges that CYSHCN students and families encounter in getting mental health support in schools.
Another key strength of the research agenda is its emphasis on cross-system collaboration. Schools, policy makers, community organizations, health providers, and families all play a role in supporting mental health. Research that connects these interest holders and identifies strategies that work in real-world settings can improve outcomes for CYSHCN while also supporting the broader population of children who have emotional or behavioral needs. For example, the research agenda poses questions, such as:
- What types or combinations of school-based models (e.g., multi-tiered system of supports, school-community partnerships, wraparound, peer support) are most effective in supporting the academic, social, and mental health needs of CYSHCN with diverse demographic and clinical characteristics?
- What are the most effective strategies for measuring the relative impact of having comprehensive teams (including school-based mental health teams and community providers) work together to serve CYSHCN with emotional and behavioral needs?
These types of questions have two types of impact: 1) Questions lead to lines of inquiry about a population that has been left-out of the school-based mental health literature and 2) Questions broaden our understanding of how school-based mental health services work, or do not work, within context and how successful services might be scaled. Having a unified research agenda that brings together multiple cross-cutting domains that intersect with other prioritized areas of work that was compiled in a participatory way will ensure that future efforts are appropriate, impactful, and of priority.
Looking Ahead
Our goal is to empower families, practitioners, and policymakers with evidence and guidance to transform systems of school-based mental health care. We look to researchers to build on this agenda by considering the prioritized questions in future work to ultimately improve the mental health and well-being of CYSCHN with emotional and behavioral needs.