Enhancing Systems of Care for Children with Medical Complexity

Children with medical complexity (CMC) are a subset of children and youth with special health care needs (CYSHCN). They have even greater health care needs than CYSHCN, as identified by their families and clinicians.

CMC have:

• Chronic medical conditions that involve multiple organ systems
• Limitations in their ability to do things that other children can do
• Need for health care services such as special equipment, home health care, and/or multiple pediatric sub-specialists

According to a 2021 study, about 1.2 million children (or 1.5% of children) in the U.S. are considered CMC. They account for many childhood deaths and nearly a third of health care spending, according to another study.

The purpose of this program is to optimize the health, quality of life, and well-being of CMC and their families. Clinicians and families tell us that getting services for CMC can be difficult. This program aims to create more cohesive and efficient systems to help CMC get what they need so they can plan, go to school, and become healthy adults. Families also do better when their children are thriving.

This program builds on previous MCHB/HRSA-funded work that demonstrated improved quality, coordination, and experience of care and services. Go to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity for more information.

Awards

In 2022, we awarded cooperative agreements for a coordinating center and five demonstration projects. The five-year project period began in August 2022 and continues through July 2027.

Read the closed Notice of Funding Opportunity (HRSA-22-088 and HRSA-22-098).

Awardee	Location	Geographic Service Region	Project Type
AcademyHealth	Washington, DC	United States	Coordinating Center
Childkind, Inc.	Atlanta, GA	Atlanta, GA	Demonstration project
University of Florida	Jacksonville, FL	Five-county region of northeast Florida	Demonstration project
University of Montana	Missoula, MT	Montana	Demonstration project
University of Texas at Austin	Austin, TX	Austin, TX	Demonstration project
University of Texas Health Science Center of San Antonio	San Antonio, TX	South and central Texas	Demonstration project

Our reach

The program has two parts:

• Five demonstration projects carry out and evaluate patient and family-centered models of health care delivery.
• A coordinating center provides expertise to the demonstration projects so that they can meet their objectives. The coordinating center develops and broadly shares resources. It also received additional funding to support the development of family-centered health homes (FCHH) for CMC.

The demonstration projects work in specific cities and regions. Their findings aim to help other areas of the country by showing how systems can work better.

The coordinating center supports and evaluates all the demonstration projects. They help share findings and resources to improve public health systems for CMC across the country.

How the Enhancing Systems of Care for CMC program works

Specific aims of the demonstration project sites include:

• Strengthening how health care teams work and communicate
• Including family voices in planning and improving systems
• Improve data and information sharing across health and education sectors
• Optimizing use of new technologies (for example, telehealth or mobile applications)
• Identifying and reducing disparities among underserved groups (for example, people living in rural areas, racial and ethnic minorities)

The coordinating center at AcademyHealth provides national leadership and expertise to:

• Support the demonstration projects through resources and activities (for example, educational webinars, data briefs, trainings)
• Gather data and measure the program’s progress
• Share successful findings and help other health care systems to learn about and use promising models
• Respond to emerging needs

Each of the demonstration projects focuses on a specific approach to improving outcomes for CMC in their community.

• Childkind: Gives under-resourced families the skills and confidence needed to manage their child’s care through a “Take Charge Medically-based Parenting” program.
• The University of Florida, Jacksonville: Uses a trauma-informed approach to improve the process of medically complex infants transitioning from the Neonatal Intensive Care Unit (NICU) to home.
• The University of Montana, in partnership with Montana Pediatrics: Aims to increase access to care by leveraging telehealth and creating a virtual care coordination model.
• The University of Texas at Austin: Supports a “Whole Child Visit,” an integrated approach to providing streamlined care to CMC.
• The University of Texas Health Science Center at San Antonio: Builds a model for comprehensive dental services to medically complex children while also training medical and dental professional to better service the population.

Like all of MCHB’s work to support child health, the demonstration projects’ models of care aim to be:

• Accessible
• Continuous 
• Comprehensive
• Coordinated
• Compassionate
• Culturally effective
• Patient and family-centered (learn more at What is Medical Home?)

Evolving approach: Family-centered Health Homes (FCHH)

Families with CMC can benefit from clinics that provide team-based, coordinated care with enhanced communication. One learning collaborative adopting such an approach showed significant decreases in total spending and a significant decrease in the number of hospitalizations and ED visits.

In 2023, we provided supplemental funding to AcademyHealth to make FCHHs more available to CMC and their families. They are engaging with clinicians, families of CMC, state Title V programs, state Medicaid programs, and health care organizations to support the development of FCHHs.

Key activities of the supplemental funding include:

• Outlining advantages of different definitions of CMC
• Defining key components of FCHHs
• Determining what states have done to support FCHHs for CMC
• Developing a toolkit to support the creation and sustainability of FCHHs
• Suggesting health and well-being outcome measures
• Convening an affinity group of state Title V and state Medicaid programs to facilitate partnerships needed to implement health home models

More information

Supporting the Blueprint for Change

The Blueprint for Change is a plan to make significant improvements to the systems that help children and youth with special health care needs (CYSHCN).

When we strengthen the systems for these children, we improve the chance to save lives, health and well-being, and health services financing.

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Contact us

Need more information, or have a specific question? Contact MCHBinfo@hrsa.gov.