- Sarah E. McLellan, MPH; Marie Y. Mann, MD, MPH, FAAP; Joan A. Scott, MS, CGC; Treeby W. Brown, MA | Pediatrics
Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system.
More than 12 million, or almost 86%, of CYSHCN ages 1–17 years do not have access to a well-functioning system of services.
Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation’s approach to delivering health care.
To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration’s Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field.
This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN.
Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels.
Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.
All children deserve the opportunity to thrive and live meaningful lives, including almost 14 million children and youth with special health care needs (CYSHCN) in the United States.1 Children are living longer with more chronic and complex conditions.2
Service sectors that provide services to CYSHCN, for example, health, education, housing, transportation, etc. must adapt to the needs of this growing, diverse population throughout their life course. CYSHCN and their families have better outcomes when a system of services is comprehensive, coordinated, and family centered.3Despite clinical innovations and significant changes in health care, such as the passage of the Affordable Care Act, 85% of CYSHCN still do not receive services via a well-functioning system (Table 1).1
Well-Functioning System of Services for CYSHCN Systems of Services
|Families of CYSHCN are partners in decision making at all levels|
|CYSHCN receive coordinated, ongoing, comprehensive care within a medical home|
|Families of CYSHCN have adequate private and/or public insurance|
|Children are screened early and continuously for special health care needs|
|Services for CYSHCN are organized so families can use them easily and are satisfied with the services they receive|
|Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence|
Adapted from Perrin JM, Romm D, Bloom SR, et al. A family-centered, community-based system of services for children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007;161(10):933–935.
The COVID-19 pandemic highlighted the fragility of sectors serving CYSHCN and families, yet also demonstrated how quickly large health systems, public health agencies, and payment structures can pivot to meet the needs of children and families. Looking ahead, sectors serving CYSHCN and their families at the local, state, and federal levels can build on this experience and transform to improve health and well-being by embracing integrated and innovative health technologies.
To advance the system of services and improve well-being and optimal health for CYSHCN, the Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB) convened a group of diverse stakeholders to develop core principles and actionable recommendations for moving the field forward. The result of this work is the Blueprint for Change: Guiding Principles for a System of Services that Meet the Needs of CYSHCN and their Families (Blueprint for Change).
This article presents the Blueprint for Change, which outlines principles and strategies to improve the lives of CYSHCN and their families. This agenda is a starting point for discussion across local, state, and federal entities that collectively can implement the principles and strategies outlined below. Further discussion about the epidemiology of the population, the history of services for CYSHCN, and specific areas of the Blueprint for Change can be found elsewhere in this supplement.
The Population: Children and Youth With Special Health Care Needs
MCHB defines CYSHCN as children and youth ages 0–21 years that “have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” These children and youth represent 19.4% of all children within the United States1 and include individuals with conditions such as asthma, cerebral palsy, and genetic disorders. A subset of this group are children with medical complexity, a fraction of the overall CYSHCN population that can require the most intensive services,4 including home nursing care, respite and palliative care.5 The MCHB definition of CYSHCN guides the work of state Children with Special Health Care Needs programs funded through the Title V Maternal and Child Health Services Block Grant,6 and has been adopted by some state Medicaid agencies.7 Further information about the characteristics of this population and the history of supporting CYSHCN can be found elsewhere in this supplement.8,9
Although the vision of the Blueprint for Change is for broad use and adaptation across the larger population of CYSHCN, it is important to note the heterogeneous nature of CYSHCN and the complexities involved in developing policies and programs for a diverse population. There is currently no consensus on the definition of being “at increased risk.” However, the reality is that all children are at risk of developing a special health care need. The intended focus of this definition of CYSHCN is on the heightened health care and related needs of the child, youth, or family, not their differences. A well-functioning system of services for CYSHCN will not only benefit them and their families, but all children, youth, and families.
Needed Services and Supports
CYSHCN and their families may need to access a range of public and private services and supports at various points across their life course, including specialized therapies, such as speech and language, or physical or occupational therapies; psychological, educational, or vocational counseling; home nursing care; school-based health services; and education for families about their child’s care.3 The workforce providing these services and supports includes health care and public health professionals, education and social services providers, home and community-based providers, such as therapists and nursing aides, community health workers, and family members.10
Multiple services, sectors, and providers create a complex and complicated network for families to manage. Navigating fragmented sectors, from health to education, is costly, time consuming, frustrating, and exhausting for families, particularly those from underserved communities.5 The lack of integration across the system creates additional barriers for families in accessing and enrolling in services, understanding what is available to them, and meeting their child’s needs.11 System fragmentation increases the inequities experienced by CYSHCN and their families.12 Navigating a poorly coordinated system is harder for those families who struggle with poverty, lack of food, housing, and/or transportation, and racism. For CYSHCN who have more complex needs, family members frequently are called on to serve as caregivers and care coordinators.5
The Blueprint for Change acknowledges the critical role of families in achieving its stated vision. Although the Blueprint for Change addresses system-level principles, the work and overall conceptualization and implementation centers on meeting the needs of children and families and requires partnering with families in implementing needed changes.
Barriers to a Well-functioning System
Structural racism13 and ableism14 in public policies and institutional practices limit access to health care and education. Sectors, policies, and the workforce can perpetuate inequities and presume “ablebodiedness,”14 which impedes progress in improving outcomes for CYSHCN and their families. Additionally, social, environmental, and political factors influence health and well-being. There are social and environmental conditions where people are born, live, learn, work, play, worship, and age, or social determinants of health, that influence many aspects of health, functioning, and quality of life.15 CYSHCN, especially those with increased medical complexity, have elevated social needs and risks; as a result, they often need additional nonclinical supports to thrive, such as supportive housing, food assistance, and special education. With increasing medical complexity come additional social and other supportive needs, which sometimes go unmet.16
The COVID-19 pandemic further exposed the fragility of service sectors and highlighted numerous disparities in accessing care, resulting in additional inequities.17 Throughout the pandemic, children and adults of color and those with disabilities experienced greater mortality and morbidity from COVID-19. Multisystem Inflammatory Syndrome, a rare but severe complication of SARS-CoV-2 in children and adolescents, disproportionately affects black, Hispanic or Latino, and Asian or Pacific Islander persons.18 These inequities informed the Blueprint for Change, and the identification of the following 4 critical areas: health equity, family and child well-being and quality of life, access to services, and financing of services.
In early 2019, MCHB began revisiting national frameworks to improve the health and well-being of CYSHCN and their families. The Blueprint for Change builds on foundational work conducted by MCHB and partners, including the 6 core indicators of a system of services3 and the National Standards for Systems of Care for CYSHCN.19 The Blueprint for Change was informed by input from key informant interviews, including grantees, researchers, and families, who confirmed the need to review existing frameworks and develop a renewed charge to the field. They also identified 4 critical areas that must be addressed to improve the system for CYSHCN and their families. In fall 2019, a steering committee of 9 national experts met monthly to discuss a draft Blueprint for Change. It was shared broadly through a variety of mechanisms, including a public request for information (RFI) in fall 2020 and a virtual CYSHCN Summit on September 22, 2020, which facilitated conversations with families and experts in the field.
The virtual CYSHCN Summit drew more than 160 stakeholders representing families, youth, federal and state governments, health care professionals, health insurers, foundations, and advocates. Following the Summit, 4 follow-up listening sessions in each critical area engaged an average of 80 participants. The comments and feedback from the Summit and subsequent listening sessions informed the final version of the Blueprint for Change presented in this article.
The Blueprint for Change
The Blueprint for Change is intended to inform research, programs, and policy at the community, state, and national levels over the coming decade (Fig 1).